Fashionisto

Here's my baby boy looking like a big boy and rockin' his new baby leggings that we won from Knotty Baby Wear on Down Syndrome New Mama's blog. Thank you again girls!



So darn cute! We've had a LOT of fun with them and Joaquin seems to really like them too. We love putting them on with onesies and Joaquin gets a ton of compliments on them!

Breaking Up

On the day of the Buddy Walk this year, I had the pleasure of walking with a friend of mine Gina and her 36 year old sister Renata who has DS. I had so much fun getting to know Renata better and we became fast friends. We even held hands for some of the walk and it was as natural as can be. She is such a sweet, dear person and is one of my personal heroes as she has overcome many health issues (unrelated to DS) and the fact that she had DS may have been one of the contributing factors to her ability to survive. More on that for another post.

During our walk, Gina asked Renata if she could share the story about her recent breakup with her boyfriend. She went on to tell me that Renata had had a boyfriend (who also had DS) for a couple of years (they worked together) and recently her heart was broken. Her boyfriend had broken up with her. And here is where you have a smile a little bit. Even Gina and Renata can laugh about it now. Her boyfriend broke up with her...not for another woman...but for a man!!!

Renata went on to say that yes her heart was broken but mostly that she was caught off guard by his announcement. She also said "I'm over him!" and said she wishes him well in his new love pursuits.

So...another example that yes, people with DS are more alike than different. Sounds like some good material for a Maury Povich episode to me!

Our Fragile Emissary

Our Fragile Emissary

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Written by Nancy Tupper Ling

Palin on Oprah

Did anyone see it? Sarah Palin on the Oprah show? Thoughts?

Loved seeing Trig. Didn't love Oprah's line of questioning on Sarah's pregnancy with Trig. Didn't love Oprah's choice of words when talking about Trig's Down syndrome.

Politics aside, I would actually love to see more of the Palin family and Trig. They look like a really normal, healthy, happy family. Looks like Trig is getting really close to walking! Trig and Joaquin are really close in age so I will always have a fascination in following that cute little boy.

I just read on Yahoo News that Palin's appearance on Oprah's show received the highest ratings since 2007 when the Osmond's appeared on her show. Pretty interesting!

Chromosome Cake

Just this evening, Hector and I had a great opportunity to attend a Sibling Workshop led by two experts in the field of sibling relationships in families with special needs. Dr. Brian Skotko and Sue Levine led the workshop and I feel so lucky that DSIA flew them out to Sacramento to speak with a small group of us. Diego was able to attend the breakout session for children ages 5-8 and then childcare was provided while Hector and I attended the parent session.

It was so informative and Diego also really enjoyed having his session with some peers experiencing the same thing he is. I think Sue validated the kids feelings no matter what they were and helped them to process having a sibling with DS. The kids expressed their feelings and also shared advice to their parents. It was really eye opening to see the things they said on their brainstorming papers. Things like "Pay attention to us too" and "Let the baby rest sometimes" and "Be fair" and "Have a baby with DS". This last one Sue and Brian mentioned is really interesting. They have collectively been doing this type of thing for 35 years and they said in the last 5 years more and more often kids (and really young ones) are talking about prenatal decisions and choices. So when the kids said "Have a baby with DS", they meant that they feel babies with DS are wonderful and they want them in their lives. Interesting!

One of the best tidbits of the night was a tip on how to explain how or why an extra chromosome can make such a difference in people. Sue mentioned this "recipe" was one way a mom in one of her previous sessions explains it so that even young kids can understand....

Chromosomes are ingredients that make us who we are and it's like the ingredients in a cake. All cakes are made with flour, sugar, eggs, some vanilla and some oil in our cake batter and we bake it in the oven and out comes a yummy, delicious cake. Having an extra chromosome is like adding in an extra egg or maybe a little extra oil. You still get a yummy, delicious cake but this cake might be a little softer, spongier or stickier but it's still a yummy delicious cake.

I thought this was a GREAT way to explain it...not to mention it kicked in my sweet tooth!

Thank you Sue and Dan for an awesome afternoon and thank you DSIA for hosting them.

Words From The Wise

I found this note on a Yahoo Group that I belong to and I thought it would be great to share. Rick Dills is a father of a 36 year old daughter with DS. This is his advice when thinking about your child's educational plan.

Here are his words:

My attitude is to step back and let the combination of your child and the education system work. I don't think that it matters whether a child is in a special program, mainstreamed, or included provided that the teachers really want your child and get significant personal satisfaction from her/his success.

There is much more to life than academics or inclusive (age appropriate) social contacts.

Yes, many of the "poster children" had immense resources spent on them. Most were already among the elite with DS in that they had much more than average capability and have achieved in specific, but important areas. Each of our children is different and each is valuable whether they are "poster children" or perhaps more handicapped from the beginning than Karen Gaffney. WE ARE NOT INTO COMPETITIVE CHILD RAISING !!!!

My observation is that satisfactory adult outcomes do not correlate with how hard you have pushed your child, but rather on how you have taught them to be proud of who they are. Setting the bar too high prepares both parents and the child for failure.

If you have lots of money, you can spend it on your child in elementary school. I would recommend saving for potential post-high school training to help your child (whatever level she/he is at) to live as independent and happy a life as they can. It is just like normal kids. Private schools are OK if you have lots of money, but if that means you don't have enough for college, you have made a big mistake.

Remember that you have a life and is isn't just taking care of your handicapped daughter. My wife and I decided from the beginning not to let this be the end of our personal lives and development. Over the years I had a remarkable career, but I did find extra time for the things Jan needed. My wife went to med school when Jan was 10. The payback for that was that when Jan went through her awful life threatening years, her Mom was there and trained to help. There were times when Jan would have died, had it not been for Mom's intervention in her care.

We raised our child with the expectation that she would go on to her own life as an adult. That is where she is today and that is where most of her peers are. The few who are "poster children/adults" are doing just fine in their 30's, but so are those who simply had ordinary caring parents who didn't have the resources to make their child a public example.

See that your child is happy and developing, even if more slowly than those without Down syndrome. See that they are praised
enough to be proud of themselves. Put your energy into the places where you can provide something that the school and other programs cannot. We included Jan intensively in our lives, hiking, swimming, skiing, and in just doing the same chores her brothers had. I stepped in when programs weren't available such as being her coach in Special Olympics when there wouldn't have been a program if I didn't.

Work WITH the people whose job is to train and support your child in a teamwork fashion and not in a confrontational one. We had a major blow-out in Jan's care in the past week. It will be taken care of because there is no blame, but rather a need for different handling in the future. Mistakes happen, but you don't have to get mad.

Yes, some people won't appreciate your child when they should. Try to fix that or if necessary withdraw your child. I always felt that Jan was a gift to the world. If you didn't want that gift for some reason, you were not entitled to have it. It is the other person's loss and not Jan's.

Rick ... dad to 36 year old Jan who does have Down syndrome and is an
individual, just as your child is!

The Episode of Glee

I have never watched the show before but I got a tip on Facebook to watch it this week.

I would love to hear how the DS community felt about the show. I found it touching at times and "touchy" at times. I'm still processing it.

For those not familiar, Glee is a popular musical sitcom on Wednesday nights on FOX around 9pm. The episode this week included two actresses with DS. One portrayed a cute, bubbly high school student trying out for the "Cheerio's" and the other portrayed an older, nursing home bound sister of one of the main characters on the show.

I would love to hear people's thoughts about the episode. I was surprised that there wasn't much blogging activity on the subject. I think we all might be too busy to watch much TV but if you did get a chance to see it, please share your feelings!

Apparently, the actresses will appear again in upcoming episodes as their story line is not complete yet. I look forward to watching it.

Here's a link to the full episode. You can even watch it online.

"Wheels"

One Lucky Baby

Joaquin is one photographed baby, let me tell you. We had the pleasure of meeting a new friend and mom of a child with DS last weekend, Michelle Slape. She is a photographer in a nearby city and she is considering specializing in special needs children. For DS Awareness Month she offered a free sitting for families with a child with Down syndrome. We took her up on her offer because...well...I just didn't think we had enough photos of Joaquin. Hahahaha!!!

Anyway, I'm glad we did it. One...Michelle is adorable, talented and she is a mom of two sweet boys...one who happens to have DS and the world's most infectious grin. His name is Cody and I can't wait to meet him next time. Two...it's fun to see different photography styles and to help inspire a possible career direction. I hit it off with Michelle the moment I met her and I hope we can get together again with our kids sometime soon.

Here is her latest blog entry. Enjoy! And THANK YOU Michelle for a wonderful morning and some beautiful photos. I can't wait to see the rest of them!

MRS Photography "My Heart Has Been Touched"

Teachable Moment

I was chatting with a new friend at the park today and the subject of Joaquin and DS eventually came up. She said she wasn't sure that Joaquin had DS because he seemed so happy. She said that she thought all kids and babies with DS were usually sad and lacked emotion. This was her vision of DS and she said that Joaquin didn't fit that vision.

I was kinda stumped. I thought the misconception was the opposite but it goes to show you that the misconceptions are all over the map. I responded by saying that typically people assume that kids with DS are always happy and reassured her that Joaquin has all sorts of emotions and that he can be sad at times too. I told her that maybe she was mixing up low muscle tone in the face with being a sad, emotionless face. I'm thinking that maybe her vision of the typical open mouth face with the relaxed tongue is what she was referring to. I tried to explain that children with DS are just like any other child. I think it made sense to her...I hope. I hope it was a learning moment for her.

I hope to never pass judgement on people's misconceptions. I hope always to be kind, informative and open when chatting with people about DS. I want to be an advocate not an adversary.

HAPPY HALLOWEEN 2009

May the FORCE be with you this Halloween!

P.S. We won Hector's Employee Halloween Photo Contest with this picture...a $100 VISA card! Woo Hoo!

Walking for Joaquin 2009

We had a blast at our 2nd Annual Buddy Walk (a.k.a. Step Up For Down Syndrome) on October 25th. We raised a total of $1425.00 (just $75 away from my goal and there is STILL time to donate) and had exactly 60 team members walking with us on the most beautiful Fall day. Our colors this year were yellow and orange and I continued my tradition of tie dying t-shirts for all the kids "Walking for Joaquin". Joaquin's Aunt Jennifer made the most beautiful and amazing J-O-A-Q-U-I-N banner that was hand sewn and appliqued with love. Team "Walking for Joaquin" was shining bright that day!

Here are just a few photos from the day...more to follow soon!

Name Tag

How did we come up with the names for our three boys?

First of all, I was fortunate enough to marry someone from Mexico and with a last name of Sanchez, we had the WHOLE world of Spanish/Latin names open to us. These names just happen to be my most FAVORITE!

Diego Zacarias....Hector and I both loved the name Diego. It came rather quickly for us. If you ask Hector he will tell you we named him after Diego Maradona (a famous soccer player in Argentina). I was always fond of Diego Rivera's art work (a famous Mexican muralist). But there was something about the name Diego that was so handsome, strong, and fresh. Mind you...this was before the "Go Diego Go" cartoon! So it was very quick that we agreed on the name. Diego is the Spanish name for James and you may also know it from San Diego (St. James). The middle name was a struggle but at the FINAL moment...like when we had to fill out the paperwork at the hospital for his Social Security card...we decided to go with Zacarias which is the name of Hector's maternal grandfather that he never knew. (By the way, Diego would have been Sofia Isabella if he was a girl!)

Mateo Emilio...Again, Hector and I loved this name. Another one of our all time favorites. We loved the sound of the name and beauty of it as well. The nickname for Mateo is "Teo". Mateo is the Spanish name for Matthew. Mateo was actually born in San Mateo County, how cool is that? San Mateo or St. Matthew. We also loved the name Mateo alongside Diego. They just sounded so good together. For the middle name, we decided to stick with the theme of it being a family name so we chose Emilio which is the name of my paternal grandfather who I never knew. (By the way, Mateo would have been Olivia Andrea if he was a girl!)

Then came Joaquin Andres... Hector and I went back and forth on the first name. I loved the name Joaquin and Hector loved the name Lorenzo. For the first time, we really couldn't come to a quick agreement. So we battled it out and in the end I chose the first name and Hector chose the second name. And yes, there is also a San Joaquin Valley here in California so you could say we have very California names for our boys! Then, so many cool things happened surrounding our little Joaquin Andres. You'll have to read one of my earlier posts about the meaning behind "Joaquin". You'll have to read Gifts 2 or go back to the early days of my blog and find my post titled Andres to hear the story of how we chose the middle name. It will give you chills. (We never really came up with a girl's name for Joaquin because we knew early on that he was going to be boy but I remember being very fond of Luciana and Hector loved Mia.)

Thank you Cheri for "tagging" me on this fun name game challenge! I love hearing stories about names. Isn't it one of the first of many big and important decisions you make for your child? So fun!

I tag...
Monica at Monkey Musings
Lisa at Bridget's Light
Elena at The Baby Who Chose Us

The Varanini Family

Here is my side of the family. We took this photo over the summer at a good friend's wedding. I am the oldest of four and there is a 12 year span between my sister and I with my two brothers in between. It's just missing the kids. My brother and his wife Jennifer have 2 precious girls...Jillian and Jolie which added to our trio of boys makes a total of 5 nieces and nephews! Here is a shot of just the siblings: Zach, Myself, Sarah and Josh.


Here is a snapshot of the "manly men" looking very proud, proper and handsome in their suits.


Here is a snapshot of the "girly girls" looking pretty darn cute and sassy.



My parents will be celebrating their 40th wedding anniversary in January. It's so cool that Hector and I both have parents who have stayed together through the good times and the bad, for richer for poorer, in joy as well as in sorrow, and in sickness and in health.

What amazing role models we have!

La Familia Sanchez

Here is a photo of Hector's side of the family when we went to visit them in Mexico a couple months after Joaquin was born. This was Hector's parent's 50th Wedding Anniversary! It was at this amazing reunion that we announced Joaquin's diagnosis and where I was inspired to write the entry for Gifts 2. You can read about what happened in Mexico by picking up a copy of the book. Our chapter is titled "Joaquin & Andres."

Hector's family is really lovely. He is the youngest of 7 children so when we all get together it's a pretty big party! This photo is of his immediate family only (only one nephew is missing from the photo). Everone is married and has at least one child. I think we have a total of 16 nieces and nephews and 14 of those are BOYS!! We look forward to seeing some of his family this Christmas and New Year's when we go to Playa del Carmen. It's going to be so much fun!

Proof

Remember a few weeks back I wrote a post about Mr. Troublemaker?

Well, here is just one piece of evidence.

Yes, he got himself inside the train table drawer.

Yes, he emptied almost every train that was inside of it.

Yes, he then proceeded to get on top of the train table to throw the rest of the trains on the floor.


Proof that we have a very mischievous one in our household!

Super Porridge

I got this recipe from a fabulous mom who makes the most gourmet (and nutritious!) baby food for her little one.

Super Porridge

1/3 cup dry grain and 2 Tbl. dry legume. For the grains, you can use oatmeal (steel cut or regular, not quick cook), brown rice or bulgar wheat. For the legumes, you can use garbanzo beans or kidney beans or even lentils.

Here's the recipe (really simple!):
Grind the 1/3 c. grains and 2 T. legumes together for two minutes using a blender, Vita Mix, Cuisinart or "Bullet". The key is to grind it for 2 whole minutes. It becomes a powder. Bring 2 cups water to a boil and add the ground powder. Whisk to combine. Reduce the heat to low and cook for 10 minutes and it's done. This recipe should give you 5 or 6 servings. You can cool it down in the fridge, then cut it in to serving sizes and then freeze them....kind of like food cubes without the ice trays. When you are ready to serve, just defrost a serving and, at the same time blend some fruit of your choice and then just mix it together with a fork.

Delicious and SOOOOO good for baby!

Choices

It's that time of year again where big choices have to be made.

What to BE for Halloween?

A Giraffe?


A Pumpkin?


A Bumblebee?


Or something else entirely?

Something perhaps from another universe?

Stay tuned! (Just think old, wise and GREEN!)

Parenting.com

Look who's in the Parenting.com "A Special Joy: Kids with Down Syndrome" Album #4...

Joaquin, 19 months

Be sure and enter your special little one too! We did it last year and I love that they do this every year in October in honor of Down Syndrome Awareness Month. So neat to see all the gorgeous kids from all over the country. Even more fun when you find one or two that you "know" from blogging!

More Alike Than Different

I love this new campaign. Please take two minutes to watch it, I think you'll get a kick out of it!

October is Down Syndrome Awareness Month

To All Our Blog Readers:

Please let us know if you have ANY questions in regards to Joaquin, Down syndrome, the Institutes program we are on, or anything related to our journey. We would be HAPPY to answer questions and help increase awareness and understanding of DS.

Thanks!
The Sanchez Family

Wordless Wednesday (Joaquin's Brothers)

Thank God for big brothers!

What joy they give Joaquin. He looks for them first thing in the morning and there is definitely a void when they are both off to school. It's a sweet reunion for all three when they are reunited.

We love our three boys!

Baby Eczema?

I'm wondering if Joaquin has a case of baby eczema.

He got a little rash on his chin a couple weeks ago and I had our pediatrician look at it and she said it was from his drooling.

Then, I tried a new fruit...pineapple and at the same time started using wipes to wipe of his face after his meals and the rash spread to above his lip and on the sides of his cheek.

So...thinking it was a food or contact allergy,I have been feeding him mostly apples, rice and sweet potatoes for a couple days to see if it would clear. Unfortunately it is still the same, if not worse. He wakes up and it's mostly clear but within a couple hours of being awake, it gets quite inflamed, red and is looking dry and cracked by the end of the day.

My baby boy's beautiful skin is no longer. Any advice? None of my kids have ever had eczema and I know how brutal it can be so I'm really worried.

Wordless Wednesday

Feature in The Sacramento Bee News Blog

This Saturday Joaquin will be featured in a special video presentation on a jumbo screen in the heart of Times Square in New York City. Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities, the 40-minute showing takes place each year on the morning of the New York City Buddy Walk® and is one of the highlights of National Down Syndrome Awareness Month.

NDSS receives thousands of photo submissions for the Times Square Video Contest. Because the Buddy Walk® promotes acceptance and inclusion of individuals with Down syndrome, the winning photographs feature children, teens and adults with Down syndrome working, playing and learning with friends and family.

Here is an article by Niesha Lofing, family and food writer for the the Sacramento Bee, about Joaquin. Click on the link below to read it. We were so thrilled to read this and it brought tears to our eyes, check it out!

Mom.me: Local toddler featured in national Down Syndrome awareness campaign

Baby Einstein

Thanks Uncle Zach for discovering this uncanny resemblance!

The Boy That Never Was

When I look at my son's face, I cannot imagine a more perfect little boy. He is exactly as he should be.

It wasn't that long ago though that I mourned the boy that never was. I was inspired to write this after reading Adrienne's blog post at Our Unexpected Journey. She gave me the courage to write about my early thoughts after receiving Joaquin's diagnosis when he was three months old.

When I was pregnant with Joaquin, I fantasized about having my third boy and I was quite proud and excited to add yet another handsome, smart boy to the family. When we first came up with Joaquin's name, I googled it to see if there were any other Joaquin Sanchez's in the world and I was surprised to find a gorgeous and talented soccer player in South America. I immediately had images of my third son following in these footsteps- possibly becoming a famous athlete some day. I fantasized about the three of our boys taking care of us as we grew older, watching over and protecting their mom. I had the whole image in my head. That perfect little family picture.

Would he be the one to follow in his grandfather and great grandfather's footsteps and become a doctor? Would he be the smartest of my three boys? Would he be an amazing athlete? Would he be even more good looking than my other two boys? I'm embarrassed and ashamed to even admit this stuff. It sounds so superficial now and it was.

Then, shortly after receiving the diagnosis of DS, I thought to myself....well, maybe Joaquin will be a superstar with DS. He will overcome all his obstacles, meet his milestones faster than most, and he would be different than others with DS. Again, I'm embarrassed and ashamed to admit this. It was almost as if we could wash away the DS part of him. I even flirted with the idea of testing him for mosaic DS because maybe somehow this was better than true Trisomy 21. What on earth was I thinking? I was still caught up in that perfect family image.

I would also stare at his face those first few days after the diagnosis and think, he's so beautiful but would he have been even more beautiful if he didn't have DS? I fought with my own thoughts about accepting and loving the face I was looking at but at the same time trying to imagine him without the extra chromosome and the tell tale facial characteristics. I found myself focusing on the photos without his tongue sticking out or without the crossed eyes. The ones where the DS was not noticeable. Maybe it would magically disappear. I'm certainly not proud to admit this.

Thank God I was given the opportunity to see what really is most important. Although I mourned the possibility of what I thought was a perfect child, my eyes have been opened to the fact that Joaquin and his "flawed" genetic makeup is more than perfect. He is beautiful. Inside and out. His true beauty comes from within and shines bright in his presence. He has already taught us more than we will ever be able to teach him. He may never be a doctor or a famous athlete but he will change the world. He already has. Our eyes are open to the richness and beauty in life that is unexpected. It's like my buddy Forrest Gump said so eloquently, "Life is like a box of chocolates, you never know what you are going to get." And when it comes to chocolate, I have yet to meet a piece I didn't like!

Now I want to share Joaquin with the world. THIS is the face of Down syndrome. THIS is what so many people fear. THIS is what some "caring" professionals want to eliminate with earlier prenatal testing. I want the world to see and know what I know now. THIS is the son I never knew I wanted or needed in my life. The boy that never was IS the boy that was supposed to be. Thank you God for blessing me with Joaquin. I am forever grateful.

First Night Away

Joaquin is 19 months old and on Friday, Hector and I had our first night away since he was born.

He did fine and he was in excellent hands with my mom and dad and his two brothers to keep him company. He woke up once at 11pm at night and clear as day said "Mom." My mom said he sounded just like his brothers and it startled her to hear him speak so clearly and adamantly. She had to convince him to drink some rice milk and eventually settled him back to sleep.

I'm still nursing him so we weren't gone for more than 24 hours. We left the boys at 2pm and we were back the next day by 9:30am. It was great to get away for the night. We went to a local bed and breakfast and we had dinner out, enjoyed a good book (Gifts 2!!!) and a movie in our room. We finished the night with a jacuzzi soak and couple's massage and facial. It was just what we needed.

We had a nice breakfast in bed the next morning but then I was eager to get home. How could anyone stay away too long from this...


By the way, Happy Birthday Papa!!!

Wordless Wednesday

The Teachings of Jon

Have you ever seen this documentary?

I've known about it for quite some time but it took me until just the other day to find the courage to watch it.

I purchased it on the recommendation of a friend of mine that mentioned it was one of the most touching things she had ever seen and she does NOT have a family member with DS. Then, I read in Kathryn Soper's memoir that she too had seen the documentary and was touched deeply by it as well. I knew it was time.

I would love to hear what people think of the show. I found it very moving and extremely interesting but at the same time I was left with many questions and a bit of sadness. Jon and his family are very happy so I should be happy for them but I'm just left wondering.

I would say that this film is a HUGE reminder of how important early intervention is for children with DS, those first 3 years of life are crucial, and Jon was in an institution for the first 7 years of his life, in a crib for most of that. We will never know how EI could have possibly changed Jon's life and maybe that's not important but it does leave you wondering.

I think of all the tools available now to help people communicate and since Jon is non verbal, I wonder if these things could help now. I remember seeing a communication board where you can place picture of things you want to say (different foods, different activities) and you push them on this board and they speak for you. I wonder if they have tried this with Jon.

Lots of unanswered questions but I guess the most important thing I gathered from this documentary is that if this is the worst case scenario in terms of level of function, there will still be joy. Jon is happy. Jon's family is happy. That IS the most important thing.

If anyone here in Sacramento or even elsewhere would like to borrow my DVD, I would be happy to lend it out. Just email me and I'll send it off to you, a little lending library if you will.

Wordless Wednesday

Trouble with a Capital "J"

You might find this hard to believe but I have never EVER had to put child safety locks on any of my cabinets or drawers. Not even my china cabinet. Please remember...Joaquin is our THIRD boy. We have made it this far without having to really change or alter our household in any way. Crazy, right?

That was until our third little devil discovered a whole new WORLD to explore inside our house.

Over the past weekend, we discovered that we have a little troublemaker in our house. Our little crawler or shall I say creeper (he's on hands and knees almost exclusively now for transportation) and our little stander and cruiser has figured out that he can get into anything and everything.

The other day I found him playing in the toilet water (YUCK!!) with the garbage can tipped over right next to him with used tissues thrown all over the place. He also LOVES to throw anything that happens to be on the bathroom floor into the tub. I've found shoes, underwear, toys all stashed in the bathtub.

Later that same day, while Hector was reading stories to Diego and Mateo at bedtime, Joaquin decided to climb up one of the boy's lounge chairs and up onto the top of the train table. Diego and Mateo NEVER did that kind of stuff!

He also LOVES to unload baskets. And we happen to have a lot of baskets that we use as storage containers. So...all the clothes, toys, blocks, etc are taken out of the baskets on a daily basis and in almost every room of the house. I do remember Diego and Mateo taking down the books everyday from the bookshelf but never to this extent. Joaquin is thrilled by laundry piles.

And don't for one minute leave the front door open! This boy will dart over to the open door and creep his way onto our porch. He's smart enough to know to stop at the three steps that lead down to the driveway. Thank goodness! Otherwise, I'm sure he'd be next door if he could.

I can't take my eyes off him when we are outside. He's put sticks, leaves, grass, pebbles, rocks and shoes in his mouth. He does this all with a grin on his face! He knows he's playing us!

TROUBLE I tell you! I have a feeling we are in for it with this one. I know I'll be buying safety locks in no time and rearranging the house. I've said it before and I'll say it again...the third one's a charm!

SOLD OUT!!!

I have officially SOLD OUT of my first batch of 19 "i did it" tees!

I have officially ordered 19 "Gifts 2" books from Woodbine House!

I have officially ordered 20 more infant tees and am saving up to order some toddler tees next!

I have almost officially SOLD OUT of this second batch of tees and will again be purchasing more books!

THANK YOU FOR ALL YOUR SUPPORT!

We CAN make a difference!!!

Got Milk?

This is the face I see whenever Joaquin wants "mama's milk" and he pulls up to my lap to ask. Notice the sharp pointy teeth? One word...OUCH!!!


I'd really like to make it until he turns two but that all depends on whether or not he decides to bite me. It's happened only a few times so far and I've escaped permanent damage but I'm still REALLY nervous about it!

The Magical Afghan

I swear this afghan has some sort of "happy" magic in it! It just brings out so much joy in all the kids. We were so blessed to be able to share in it's journey around the world and we also feel blessed to be a part of this very special T21 global community.

Here is a series of photos of Joaquin playing with the T21 Traveling Afghan. He was so theatrical with it.








And then it was time to pass it on to Joey. Joaquin tucked the blanket around Joey very carefully and then looked at me as if to say "Does it really have to go?"




Apparently the afghan also has some magical sleep powers...Joey fell fast asleep as soon as we put it over him.

Guess What We Got?

The OFFICIAL T21 Traveling Afghan!!!




John Michael dropped it off yesterday and we are thrilled to have a few days to enjoy this amazing little blanket. So special!

Read more about this afghan and sign up if you haven't already. We will be passing it on to Baby Joey and then Miss Gabby. Thank goodness for the mid-August chill we've been getting here in Sacramento. Makes us all want to get cozy with the blanket!

Wordless Wednesday

Joaquin's favorite part of Speech Therapy at Jabbergym.

Do I Have Down Syndrome?

A few months ago, my oldest son Diego asked me a question that made me think long and hard about how much siblings can be affected by having a family member with special needs.

He asked me out of the blue..."Do I have Down syndrome?"

Me: "No you don't have Down syndrome, why do you ask?"

Diego: "I want to have Down syndrome!"

Me: "Why?"

Diego: "Because....(said with a sad tone in his voice)....I want to be special too."

Me: "Diego, you ARE special! You don't have to have Down syndrome to be special. We love you just the way you are. We love all of you. You are ALL special to me and Papa."

Wow.

Since that conversation, I've made an extra attempt to explain what DS is to Diego and to remind him that he is just as special as his brother Joaquin is and just as special as Mateo too. It's been an opportunity for me to be sure and check in with him. Now I understand how deeply this has touched him. It's true. Joaquin gets A LOT of special attention. Lots of different therapists come in and out of the house every week. Most are very welcoming to Diego but there is one therapist that prefers that the boys stay completely out of the room during Joaquin's session and that is really hard on the boys and on me. Joaquin is also a people magnet so he gets a lot of attention from family, friends, even strangers and this must be hard on the boys too.

Another interesting thing that has been happening lately, Diego will let his tongue rest on his lower lip almost as if he wants to look like Joaquin. He doesn't do it disrespectfully. It's a subtle thing he does when we aren't looking. It's like he is experimenting with it. I know that this is an attempt to get our attention as well.

The one thing that we have going for us is that Diego absolutely ADORES his brother Joaquin which is so beautiful to witness. I wish he felt the same way about his brother Mateo sometimes! But I can see that if I don't continue to watch the family dynamic that some resentment could grow and that's the last thing I want to have happen. I take extra care in making sure each of the boys gets lots of attention and special activities specific to them but it's hard sometimes because Joaquin is also the "baby" in the family so naturally he's going to get more attention just based on his birth order. Thankfully I'm a first born in my family so I know how Diego feels at times, but having a child with special needs in the family is very new to all of us. I would love to attend some workshops on this topic in the near future or chat with families who have been through this to make sure I do the best job I can in raising my boys to love one another and to each feel individually special. All of this without any resentment towards their youngest brother.

Just another reminder to tell our children, every day, with Down syndrome or not, that they are loved and they are SPECIAL.

i did it

"Just Do It"

Nike's hugely successful ad campaign has been telling us for quite some time now to just do "it".

It's about time the DS community came back with our own slogan. Our own ad campaign.

On our recent trip to Seattle, Joaquin was just learning to pull himself up to stand and he was SO proud of himself. All of us were hanging out and watching him try out his new skill when all of a sudden he starting laughing, cracking himself up and clear as day shouted "i did it"! (Hector added some appropriate music to the video clip of Joaquin's new words and he added a bit of crawling footage from earlier today for fun!)



I didn't believe it. I thought I was hearing things but then he said it again. And again. And again. Until we were all cracking up with him, half in disbelief and half in awe. Here he was, accomplishing another milestone and telling us how proud he was. "i did it".

He did "it".

And so did Avery.

And so did Bridget.

And so did Finn.

Nate did "it" too!

And there are hundreds more doing "it" every day.

Three simple words that mean so much. Accomplishments that are celebrated and cherished. All the simple little things and the big things too. First smiles, first steps, first words. Things we used to take for granted and never will again.

I took this small little phrase that means something so big and made a limited quantity of infant and toddler tees with the slogan on it.



My hope is to sell these tees for $21 each (in honor of Trisomy 21) and for every tee purchased I will buy a copy of the new book "Gifts 2", sign it with the name and/or blog of the child who the tee was purchased for on the inside cover (optional) and donate it to a local hospital, genetic counselor's office or pediatrician's office here in Sacramento. If I sell out quickly and there is a lot of interest, I will have more tees made and expand the effort. I have wanted to give back in some small way and I thought this might be a fun way to do it. We need to spread the word that our children are amazing! They can do "it". Maybe this really could be our new slogan. Our new ad campaign.

If you are interested in purchasing a tee, I have them in 3 different sizes (6/12 mo, 12/18 mo and 18/24 mo). Shipping is on me! You can order a tee by using the comments section here on this post just leave your email address and t shirt size and we'll work out the details. Or you can also order on my online business site Addy & Sam as soon as we get it up on the site.

Let's do "it".

No Pity Parties

Just the other day I met a new friend at a park with our babies and she asked me with frown on her face and a sad tone "Will he ever walk or run?" I told her OF COURSE! And he will probably play soccer, play t-ball or be on the swim team. Of course!

Sometimes people (myself included at times) want to focus on all the things Joaquin is not doing right now. Some people still feel pity for Joaquin. I think this is the hardest part of having a child with DS, when people feel pity or sorrow for Joaquin. So, I thought it was time to switch the focus a little bit. It's time to stop thinking about all the things he isn't doing or can't do right now.

Things Joaquin IS doing and CAN do right now...

move anywhere he wants to go and FAST
put himself in and out of the sitting position
crawl on hands and knees
pull to stand
play peek a boo
say mama, papa, nana, all done, bye ("buhh"), dog ("duhh"), grandpa ("gahpah"), ball ("bahh"), agua
eat at the kitchen table with the family
drink from a straw cup
wave bye bye and hello
sign "more" and "all done"
play ball
play on the drums, piano and maracas
smile, socialize, make eye contact and FLIRT!
get shy
gnaw on his teething biscuits
escape out the front door
get into cupboards he's not supposed to
put things in and out of containers
purposely put his feet in his mouth and grin when you say jokingly "Don't eat your toes!!"
rip his brother's favorite books
throw a small fit when you say NO
pull his lower lip up and frown when his brother takes something away from him
give kisses on command (watch the tongue!!)
push his brother away when he's had enough
laugh and giggle when you tickle him
splash and play with water
have 1/2 hour conversations with us in the morning
beg to get into the shower or bath whenever someone is in it
wrestle with his brothers
follow the dog
sleep through the night
cry when he is sad
screech with joy when he is happy

I'd say he is doing just fine...thriving actually!

HOT Stuff

Sacramento is HOT in the summer!

It was 104 degrees today. We've been spending a lot of time in the pool or at spray parks.

This is how Joaquin is looking these days. It's either this outfit or a diaper. Too hot for anything else!

Homemade Teething Biscuits

Vegan (Wheat Free) Teething Biscuits

Ingredients:
1 cup fruit juice
1 cup flour (any type)
1 cup rice baby cereal
3 TB oil (any type)

Directions:
Put all ingredients into a mixing bowl and stir together until well combined. Roll out on a floured board and cut into shapes. Bake for approximately 20-30 minutes at 350 F (175 C). These biscuits can be frozen for storage and your baby might even enjoy sucking on a partially defrosted one. The cooling on the gums will feel wonderful.

I plan on making these this weekend! I'm so excited. I've been searching and searching for a teething biscuit or cookie that meets the dietary needs of Joaquin. I've been to our local co-op, Whole Foods, our regular grocery store and I haven't been able to find anything that fits. This recipe is perfect. I plan on using a gluten free flour, not sure which one yet. I'll let you know how they turn out and whether or not the little man likes it. He's got four molars coming in at the same time. It's time to find something other than his fingers to chew on!

On Safari

We went on a safari the weekend of the 4th of July in Santa Rosa called Safari West. We rode on a jeep in an open wildlife preserve and got to see the animals up close and personal.


The boys loved it. Especially when one giraffe decided to come and check us out when we were on top of the jeep. He was literally a foot away from Diego's face. It was so cool!


By the end of the 3 hour tour, Joaquin was getting sleepy but once again proved to be an awesome travel companion. He was awake for the whole event and never once complained. It was a great family trip. Next time, we'll have to go and stay the night. How cool would that be?

Wordless Wednesday (4th of July 2009)

Nori

Joaquin continues to eat more and more variety and textures of foods. His absolute FAVORITE snack is nori. Yes.....indeed. He loves dried seaweed.

We break it up into little pieces and he readily opens his mouth and let's it quickly dissolve. It's a great way to get a "green" vegetable in him. As a matter of fact, it's Diego and Mateo's snack of choice as well.

Another fun snack we've discovered is fruit leather. All natural, organic, 100% dried fruit strips that I break into small pieces and Joaquin gobbles it up. He still continues to eat brown rice puffs as well so now we have a nice variety of easy to travel with snacks that don't spoil or require any special handling. These snacks and his straw sippy cup full of water are all we need and we are ready to go!

Joaquin is still officially vegan and I'm still breastfeeding a couple times a day. He has never had dairy, soy, meat, wheat, banana, nightshades, citrus or corn. He eats a variety of fruit (apples, berries, mangos, peaches, pears, plums) and vegetables (peas, spinach, squash, sweet potato, pumpkin, carrots, turnips, broccoli, beets) and he eats flax meal, brown rice, teff, coconut/olive/grapeseed oils, lentils, beans (kidney, black, pinto) and oats. He is thriving, healthy, has tons of energy and has a really gorgeous glow to his skin!

The only supplements we use currently are B-12 once a week, occasionally some probiotics and when I feel like it a multivitamin.

I highly recommend trying the seaweed. It might become your little one's favorite new snack!

Gifts 2

It's here! And ready for pre-sale at Woodbine House and Amazon.

I cannot wait to get my hands on this. I cannot wait to read it cover to cover. We are contributing authors in the book so we are especially excited to see it in print.

Gifts, the first book, was a life saving book for me in the early days of receiving Joaquin's diagnosis. I truly believe that reading Gifts helped move me quickly out of the grieving process and into complete joy and anticipation. We honestly feel that Joaquin is a GIFT and the book certainly was a gift as well.

To be able to give back to other families now in Gifts 2 is an honor. We are so proud of Kathryn Soper's work in collecting the stories and publishing these amazing books...these amazing GIFTS.

Don't you just love the cover photo?

What Do You Think?

I just want to get this one off my chest because it's come up quite a bit for me and it's my own personal battle or struggle, if you will. I wonder what other people think about this.

Here is the scenario. We parents all love to talk about the future of our children with our friends and their kids. Often we parents love to talk, joke, or imagine our son/daughter either dating, marrying, or going to the prom with our friend's son/daughter. This is very typical, fun and harmless talk.

Now here's my dilemma. When it comes to Joaquin, I find myself holding back from making these types of comments for fear of alarming the other parent in some way. Would it freak my friends out? Now, Joaquin is already betrothed to many adorable sweethearts in the "little something extra" club (wink, wink!!) but I have never made a comment to a friend if their child happens to be "typical." I know Joaquin is loved and accepted by my friends but for some reason I'm afraid to even approach this particular subject. In fact, I steer clear of this kind of talk when it comes to Joaquin. If it's Diego or Mateo, it's a totally different story.

Is this wrong? Is this being too cautious? Is this a silly thing to be thinking about? Am I being prejudiced? Am I limiting my child in some way? I don't know. If we are all about acceptance, then I shouldn't be worried about making these very innocent and fun comments about Joaquin with whoever pops into my head. Is it realistic to think that he will date or marry someone "typical"? I don't know...probably not. Is it possible he will go to a prom with someone "typical"? Probably. I think about the movie Mr. Blue Sky where a "typical" young man falls in love and marries a young woman with Down syndrome. I thought the movie was charming but unrealistic. I love the idea of it but somehow I just don't see it happening. Has it happened before? Am I way off base?

I wonder...

Anyone else feel like this sometimes?

Wordless Wednesday

Joey

Joey (a.k.a. Jo Jo) is getting big! Here is an adorable photo my friend Jennifer Ferrara took a few days ago at the park. We love taking care of Joey during the week and it's so much fun watching him grow and develop. He is SO strong and determined and he is such a sweet baby boy.

Mateo...An Old Soul

I heard the sweetest words from our little four year old Mateo the other day. It was one of THOSE days. A day when lots of thing went wrong. Stroller smashed into my car (no babies in it...thank goodness!), purse rolled off the top of the stroller into a filthy, murky, wet ditch (as a result of the stroller smashing into my car), stroller gets quickly relocated only to roll through some old...yikes!!!...vomit (or so it looked like). BLECH!!!! I'm quietly dealing with all of this while trying to unload Mateo, Joaquin and Joey out of the minivan in order to get to a Speech Therapy appointment on time in Midtown. I usually have it down to a science but this particular day was a circus act.

Then, in the quietest of voices and from behind me, Mateo is standing on the sidewalk apparently watching all of this unfold and understanding my desperation he says to me....

"Mom, I wish I was a grown up, so I could help you."

My heart immediately melted into a puddle on the cement. My sweet, soulful, gentle Teo. I immediately hugged him and told him how those words were the kindest words I had ever heard him say.

I love you Mateo, my sweet old soul.

Our Other Backyard

Thank goodness for the park down the street from our house. It's like our other backyard these days. Here is Joaquin playing with Mateo in the "tube" at East Lawn Park. Gotta love those smiles!

Rock-n-Roll

Last Saturday, I completed the Inaugural Rock N Roll Marathon in Seattle! It originally was planned to be a family vacation but in the interest of saving money we decided that I would take Joaquin (since I'm still nursing him) and go with my girlfriends.

We drove the minivan straight through from Sacramento to Seattle in a record 13 hours through the night. Joaquin was a champion passenger as were my friend Mary Ellen's two girls, Malia and Annalise. Mary Ellen, Michelle (my good friend and running partner) and I took turns driving and stopped 2 or 3 times for gas and snacks and the kids slept right through it all.

We stayed at Mary Ellen's sister's house in North Seattle and were welcomed warmly by the family which included little Kaylin and Anika. Joaquin was surrounded by the girls all weekend.



The day before the race, Michelle and I toured Seattle. It is one of my favorite cities and it was a gorgeous sunny day. We went to Pike Place Market and the "Original" Starbuck's coffee house. Joaquin was thrilled with the sights and sounds of the busy city.






Race day was perfect as well. I felt prepared and ready for the run. Within the first 7 miles of the course, I saw two bald eagles on Lake Washington Boulevard. Amazing! At mile 20, Mary Ellen and Joaquin were waiting for me but I never saw them or heard them...I must have really been in the "zone". I feel terrible that I didn't see their smiling faces and I know it wasn't easy for them to get there either. Joaquin spent the rest of the day with Mary Ellen and her sister Suzie at the Seattle Children's Museum as I raced my way to Qwest Stadium for the finish of the 26.2 mile run. It was a perfect day and a perfect run for me.

The following day we packed up the minivan and headed home to Sacramento. It took us much longer going home after a stop in Portland for lunch and Ashland for dinner. But once again, our kids proved to be much better passengers then us adults and were absolute angels the whole way home.

It was a wonderful weekend filled with good friends, good food and great accomplishments!

Kisses

One of Joaquin's most favorite things to do lately is give kisses...sweet, wet kisses. For the past few weeks, he has really been pouring out the love.

Here are a few photos at the park this week where all he wanted to do was kiss on baby Joey. It's adorable! Even Mateo wanted in on the action.

New Fiscal Year

I got the dreaded call today from Joaquin and Joey's physical therapist. All therapies are cancelled today since she has not received authorization yet from the Regional Center for the new fiscal year which starts today July 1st. Our PT feels she will get the authorization and not to worry just yet but I can't help but be concerned. These boys needs their therapies.

I will be sending my letter to the State of California today. This is not good.

Blueberries!

Blueberries are a BIG hit in our family. We can't keep a container around for much longer than one sitting. Add one more person to the mix!

Joaquin LOVES blueberries and he ate them in halves. This is his first fruit that we haven't had to puree or mash. I just cut them up into halves and he chewed each one up. So fun! I think we're on to something here. Maybe my Vita Mix won't be needed as much anymore. Very exciting!

Philadelphia Postponed

We've decided to postpone our revisit to the Institutes. We probably won't be going until November. We were originally scheduled to go in August but after a conversation with our advocate, we decided it would be best to wait. I had a great conversation with Susie, our advocate, and I actually felt better after talking to her. I was completely honest with her about how little we have been able to accomplish with Joaquin over the past few months in terms of our goals.

We've been busy and honestly a lot of Joaquin's program has not even been started. There is nothing worse than writing those words. I feel like I am failing him as a mother right now. He is still getting his Early Intervention therapies 5x/week but there is sooooo much more that I could and should be doing with him. Talk about mother's guilt.

When I get down to really looking at my schedule, it is pretty crazy busy but there IS time to fit in his program. However, I'm lacking the energy and enthusiasm that it takes sometimes and I usually want to spend my free time loving on Joaquin not "working" with him. Again, it's not supposed to be WORK and in fact, the program is supposed to be fun and enjoyable but I just feel like I'm overwhelmed with it. With the diagnosis. With the prognosis. With the responsibility. With the paperwork. With everything.

There are days when I want to throw in the towel. I want to forget about the Down syndrome and just know Joaquin. I want to accept him for all that he is right in this moment and to stop worrying about the future or how much his brain is stimulated or developed.

This job called parenting is exhausting.

So, I will take Susie's advice and start from the beginning. Taking it one step at a time. Starting with one aspect of the program and trying to accomplish it, then slowly adding more when I can. Any little bit is better than nothing. And I will remember that Joaquin is thriving no matter what by living in an active, stimulating and loving home. Thank God for that.


Here is Joaquin at the end of the day. Exhausted...just like Mama!

Roll Call

Are you coming to the National Convention this summer in Sacramento? Do you blog? If so, please check out DS BLOGGERS and get your custom made badge. I can't wait to meet everyone in person. I'm so excited!

Honey Bear

Honey Bear....I love you!!!!

Joaquin can drink from a straw! Yahoo! Thanks to the Honey Bear Sippy Cup. We are so excited!

It just took being consistent. We've had this thing around our house for a long time but I just didn't give it the effort and consistency that Joaquin needs. After one week of working with it, basically squeezing the bear so that Joaquin knew it had liquid in it and then waiting for him to close his mouth around the opening, he figured out how to sip a straw!

Another milestone to celebrate! One step closer to weaning!

A Little Dream of Mine

Have I ever mentioned that I have this dream of becoming a yoga instructor for special needs children... a kind of mommy and me program? I have this dream and vision of Joaquin as my model as a child and then, as he grows, my business partner. And then one day teaching his own classes and starting a little franchise. I love my little yoga dream.


Here is a photo of Baby Joey and Joaquin hanging out together. So cute!

Dancing Ladybugs

A really cool thing happened yesterday and I just have to share.

I was going through our digital camera and came across a cute video of Joaquin playing with his new Dancing Ladybug music box and I was watching and listening to it on the camera with Diego and Mateo on our couch. Joaquin was at my feet and seemed to be listening too. Then, he went crawling off with a purpose and crawled half way across the living room floor and around to the fireplace where we keep a lot of his toys. The Dancing Ladybug music box is one of many toys stored there and Joaquin went directly to it and started to play with it. It was AWESOME! He completely understood what he was listening to on the camera and decided that he wanted to play with it after hearing it.

Isn't that cool?

Here is the video we were watching...



There is a very sweet story about the Dancing Ladybug music box. A few weeks ago we were visiting with our dear friends Natasha and Stephan in San Francisco and they have a beautiful daughter named Avila. We had the pleasure of hanging out and playing with the kids and Joaquin discovered Avila's music box. Natasha wound it up for him and set it down and it was so precious. Joaquin watched and listened with such focus. Then he did his little head tilt and started doing his little wiggle dance to the music. It was a sweet moment and I had thought to myself that I would have to find something like that for Joaquin. We left San Francisco and our friends and it wasn't until the following day that I needed to get something out of my purse. Lo and behold, in my purse was the Dancing Ladybug music box. Natasha and Stephan had somehow snuck it in my purse so that Joaquin could have it. Thank you again for such a lovely surprise. Joaquin LOVES his music box from Avila.

Signing Times

Joaquin is communicating via sign language and it's so darn cute.

His favorite is "more" and "all done" always followed by his clapping applause and huge grin. He has other ways of communicating that he wants "milk" and it's more of a head tilt towards mama's chest rather than the actual hand sign for milk. He is also verbalizing more with purposeful sounds. He will also dance on command. His favorite is when he has had enough of his brother Mateo and he pushes him away with a big grunt sound that I'm sure will become "NO!"

It's wonderful to see his communication skills blossom and I'm hopeful that he will be able to make his needs known by signing before he can talk. We are also supposed to be using a communication board with the words "yes", "no", "maybe" and "I don't know" on them but we haven't gotten in the habit of using this yet. It's not as easy to incorporate this into our daily routine. Signing is just so easy and natural for me but I can see where having the ability to use the communication board would also be very helpful as he gets older.

Here are some photos of Joaquin playing and cheering, one his favorite things to do these days!

Wordless Wednesday

Baby Food, Inc.

On Sunday, I spent the day with Lisa and made baby food for our little boys. It was so much fun. I don't know why I never did this with my other two guys! It was much easier than I had imagined. Here is Lisa's post with pictures.

Could be an exciting business adventure?!?

Thank you again Lisa for showing me the ropes and how fun and rewarding it can be to make homemade babyfood. Now I just wish I had a bigger freezer!

"Human beings are not better off without Down syndrome."

"I live in a nice house in the country, I keep five horses and as a family we are comfortably off. For all these things people envy me. But I have a child with Down’s syndrome and for that, people pity me. And I am here to say: wrong. Wrong, wrong, wrong. I am not to be pitied but to be envied."

These are some quotes from an article published in the UK Times by sportswriter Simon Barnes back in November of 2006. It's titled I'm not a saint, just a parent.

It's written with that great British humor and wit. If you get a chance, please read it. I love it. Thank you Sharon and Laurie for sharing it!

Three's a Charm and Four is...

Crazy?!?

No way!

We have a new baby in the house!!! Well, at least for 4 days out of the week.

I am currently babysitting a 12 week old baby boy named Joey and he is the cutest, sweetest thing! He is so tiny next to Joaquin. All of a sudden my baby boy looks HUGE! Joey also happens to be blessed with a little something extra so it's my privilege and pleasure to help raise him while his mom and dad are working. I hope this is the beginning of a life long friendship for Joaquin and for our families.

It has been a really smooth transition so far and the boys love little "Joe-Joe." When Diego wakes up in the morning, he searches the house to see if the baby is here yet. Mateo said he loved him today. Joaquin is mesmerized by him. I will say the biggest challenge is loading and unloading the car, thank goodness I have a minivan!

We look forward to watching baby Joey grow and develop and thrive. He's ADORABLE. Check out his huge eyes! He's so inquisitive and alert. He's even rolled from his belly to back for me on his first day here and it looks like he is ready to roll from his back to his belly next. Go Joey!!!!!



I was secretly hoping that by taking care of Joey that my urge for more babies would be cured. I'm afraid not! Going from 3 to 4 boys is not so bad! Bring it on!.....No worries Hector....I'm all talk!

Our Own T21 Afghan

It came in the mail yesterday.

Our very own T21 Afghan made just for Joaquin.



He loves it and so do I. The colors are gorgeous, they compliment his nursery bedding (and his eyes!). Thank you so much Chandos for sharing your talent with us. We love it and look forward to staying cozy and cuddling in it for years to come.






We can't wait to get the "official" afghan sometime this summer.

ONE BLANKET. MANY STATES. MANY COUNTRIES. HUNDREDS OF FAMILIES. ONE COMMON THREAD!

Happy Mother's Day

It was a perfect Mother's Day. Joaquin took his very first bike ride today in the chariot next to Mateo and pulled by his Papa. Mama got the afternoon off to ride with her girlfriends and view the David Lubin Garden Tour in East Sacramento. Later on, after dinner with Nana, Grandpa and Aunt Sarah, we went bowling. Another first for Joaquin. He loved the music, the sounds, the bowling ball, the pins, everything. Joaquin stayed up way past his bed time, red eyes and all, so as not to miss a thing! It was a really full and beautiful day. Thank you God for blessing me with my family. Being a mother has always been a dream of mine, something I knew I always wanted to be since I was a very little girl. Today is a great reminder that I am living the life I dreamed of...I'm a MOM!

Breakfast of Champions

I just got finished feeding Joaquin his breakfast and I thought I would share what he had today.

He nursed around 7 am right when he woke up and then spent the morning playing with his brothers. Yes! He actually plays with Diego and Mateo! In fact, this morning Mateo played "catch" with him by rolling a ball back and forth on the floor for about 30 minutes while I helped Diego with his homework. At 8:30 am, I fed Joaquin his breakfast. I mixed a jar of warm organic applesauce with a couple tablespoons of brown rice cereal, a teaspoon of flaxseed meal, a teaspoon of coconut oil, a few pinches of cinnamon and his morning supplements (Kyo-Dophilus, Folacal, and B12) ground up and mixed so he doesn't notice them. He gobbled it up and finished it off with some water from an open cup and now he is back to playing on the floor with his brothers.

A breakfast of champions! Now...if only his mom would eat as healthy in the morning!!!

1st Anniversary

One year ago today, we got the call from our pediatrician telling us that our three month old son tested positive for Trisomy 21. It's a day I will never forget and a day that will always hold a special place in my heart. It's the day my life changed forever. What a difference a year makes. One year has passed and the fear of the unknown is gone. The misconceptions have been replaced with stories of hope. The beauty of imperfection has been embraced. We truly feel blessed with the gift of our son.

Today, Joaquin also woke up with his two front teeth. They have broken the surface. It's been at least 9 months since he got his first two teeth on the bottom, now these two will join the others to make a total of 4 teeth! Thank goodness they have broken the surface. He has had some sleepless nights due to the pain. For weeks his top gum was swollen and red. Soon his smile will change. That infectious, joyful smile will be filled with his pearly whites. Stay tuned for pictures!

May Day

Happy May Day! Spring has sprung. I have a feeling this season will be full of new beginnings.

Here is our gang on Easter at my brother Zach's apartment. Diego (6), Mateo (4) and Joaquin (1) love to hang out and play with their cousins Jolie (1) and Jillian (2 1/2).

New Kids on the Block

Meet Sheridan, Gabby, John Michael, and of course Joaquin. These are the new kids on the block....or at least the newest members in Sacramento with a little genetic enhancement as Sheridan's mom, Lisa, calls it.

We met last month for a playdate and had a wonderful time. I can't wait to watch these kids grow up together and I look forward to forming a lasting bond with the moms as well. It feels good to have our own little community of families on the same journey.

Picked Apart

Wowza!

I am shocked at how my baby was handled just the other day. I have to leave out some of the details out of privacy for the person involved but I had to literally hold my jaw closed when I saw how Joaquin was treated the other day.

So, how do I explain this without giving away too many details? We met someone for the first time who works in the field of special needs and academia. I've been looking forward to meeting this person based on reputation. I had really high hopes and expectations. We had an opportunity to meet the other day.

This person held out their arms to hold (I thought) Joaquin when we first met. Instead of holding or hugging or talking with Joaquin, this person proceeded to inspect my child. First his feet were grabbed, looking for the sandal gap. Then his hands, literally turning both hands upside down to see if there was a simian crease. Then his shirt was lifted up to look for I don't know what. Then this person tried to get the baby to stand up on the table facing out and mentioned something about the fact that Joaquin had pretty good tone. All this time, Joaquin is trying to make eye contact with this person and arching his back to try and face this person. Joaquin is extremely curious, social and loves to look and hold people's faces but there was no opportunity for him to do this as he was being inspected. At this point, Joaquin was reaching for me so I grabbed him and this person proceeded to tell me that Joaquin had a mild strabismus but it "looked good" and that his facial features were mild. Then this person asked me if Joaquin had trouble with his cervical spine. Oh. My. Gosh. I had no idea my baby was going to be this persons next guinea pig or anatomical model. Joaquin is a baby for goodness sake. A baby....first. A baby who is darn cute....second. A baby who has Down Syndrome....third. We weren't at the doctor's office, we weren't at a clinic. We were at a youth sports event with other children and families that were all hanging out. It was so surreal.

After this really crazy, unusual, uncomfortable few minutes of interacting, this person then proceeded to tell me that Joaquin was a real cutie. Thanks.

I was really quite shocked by the whole interaction and a little confused and puzzled. I can understand that this person was probably just curious and wanted to see the "markers" up close and in the flesh. Maybe this person was "showing off" a bit and wanted me and those around to know just how smart this person could be. I don't know. What I do know is that my hopes and expectations were met with a big dose of disappointment. I guess not everyone is blessed with the sensitivity chip.

My First Step

I took my first step to educate a friend about the "R" word yesterday.

I had to do it. There have been too many times I have let it go (not with this one particular person but with friends or family) and I decided that I HAVE to take a step towards educating my circle of friends when the opportunity is there. In the interest of privacy, I will omit the details of this specific interaction, but I will say that I did speak up and feel that I did it in a way that was non confrontational and hopefully effective.

Now it helped that this all happened on Facebook so I was able to do it with typed words. When I have to say something live and in person it will most definitely be more challenging. But, I took my first step and it feels good.

Fun Times!

Joaquin loves the slide!

Angel Face

I could stare at this face for eternity. His long dark lashes. His gorgeous skin color. His perfectly shaped head. His adorable button nose. His soft kissable cheeks. He's so beautiful to me.

Tres Amigos

Look how tall Joaquin is getting!

Milestones

Another milestone!

We celebrate every single one.

Joaquin is officially sitting up on his own and by this I mean he is able to go from a prone position all the way to sitting up to play...all by himself. It's really cute and this milestone kind of caught us off guard. A nice surprise!

A Beautiful Couple

A few fellow bloggers discovered this amazing photographer who often photographs children and adults with DS. Her name is Conny Wenk and she just shot what looks to be an engagement session. I have to share it too. Look at this gorgeous couple.

Andrea & Christian

I can't wait to see Joaquin grow up to be a handsome young man!

Have You Ever Seen a Dancing Brobee?

Cutie Pie

Hi there!
My family thinks I'm pretty cute. What do you think? Hope you all had a beautiful Easter holiday!

Rub A Dub-Dub

Three Boys in a Tub!

Disneyland

Joaquin made his first trip to Disneyland this past Friday in honor of his Big Brother Diego's 6th birthday. We were at the park when it opened at 8 am and we left the park close to 11 pm. That's almost 15 hours of Disney. Whew!!

Joaquin was an absolute angel throughout the trip. The highlight for the whole family was "It's a Small World". We were able to time it perfectly after a little nap and he was completely intrigued by the whole ride. He looked up and around and side to side the entire ride. It must have been the music, the lights, the repetition and the adorable doll faces smiling at him. It was a priceless moment for the entire family.

I have absolutely no pictures to post from our day because we forgot the battery pack for our camera. We did buy a disposable camera but who knows when we'll get those developed!

I found it interesting that I didn't see a single child with Down syndrome at Disneyland that day. I saw two adults, one who was in a wheelchair, but no children or babies. I was really looking too.

It was great to take the whole family on a vacation, even if it was only for one day. It was good for us to get away from the usual grind, take a day off of school and therapies and just enjoy our time together. It really is the Happiest Place on Earth.

Spread the Word to End the Word

3-31-09

It's time.

It's time to stop using the "R" word (a.k.a. "Retard"). Educate yourself, educate your family, educate your friends, educate your neighbor, educate a stranger. The hurtful and casual use of this word needs to stop.

Why?



Because it hurts him...and millions of his peers. Please spread the word to end the word. Do it for Joaquin. He deserves respect.

For more information on this effort, go to Spread the Word to End the Word.

The Flirt

We have a big flirt over here! Joaquin has discovered that he can charm the masses with his smile and coy head tilt. Oh my gosh is it ever cute. Then, after he reels you in with his grin, he'll start wowing you with his signs...waving, followed by some claps, and then again the smile. I have got to get this stuff on camera!

3/21: World Down Syndrome Day

Today is World Down Syndrome Day...3/21...in honor of the three copies of the 21st chromosome.

Today, there is still a lot to be done in terms of advocacy, education and acceptance for children and adults with "designer" genes but we have come so far.

I watched a show on HBO called "Educating Peter." It's a documentary about a boy with DS who is integrated into a public school in the 3rd grade back in the early 90's. It actually won an Academy Award for Best Documentary Short Subject in 1992. I look forward to watching the sequel "Graduating Peter" which continues to follow this boy through high school. If you have HBO, check it out. There were parts that were very difficult to see and watch but the end result is extremely heartwarming and positive. We've come a long way since the early 1990's even.

Today, I have fewer days of worry or fear or sadness in regards to Joaquin's diagnosis. I can feel with each passing day, week, month and almost a year that I am growing stronger and I am honored to be on this journey. I feel blessed and special. I feel loved, supported and cared for. I am grateful for my family and friends. I appreciate my husband and I am thrilled with our family of three boys. Joaquin is going to reach his potential and love his life and that is all that matters at the end of the day.

Happy World Down Syndrome Day!

What to Say?

So.....I'm not sure what to do or say.

We have tons of activities going on all the time and it seems as if my minivan is a gathering place for preschoolers and kindergartners these days. When I pick up Diego from school, I usually park right outside the school and have the side door open so I don't have to get Joaquin and Mateo out each time I go. It's often that a few kids will jump in to say hello to all of us in the car and look at the baby. Recently we've also been doing a lot more playdates and carpools and there are lots of kids in our lives. This is where my question comes up.

Joaquin does not have a strong tongue protrusion but often when relaxed, which is usually the case when he's in his car seat, his tongue will stick out. Also, lately, he is teething and it seems like his tongue is one of his favorite things to play with in his mouth. The number one comment made by kids when they see the baby is "Why is his tongue sticking out?" which is followed by laughter. Now, this isn't usually taunting laughter. I think it's fairly innocent. I believe it's because every school aged child has been told not to stick their tongue out so when they see a baby doing it, it's fascinating and hilarious.

What do I say to that? How do I explain? Is this an opportunity to educate and inform? Or do I continue to do what I normally do which is say something like "oh, he's just relaxed and his tongue sometimes sticks out" or "he just likes his tongue" or "isn't he funny?". I find myself struggling with how to give an appropriate response. I feel like this is just a small "taste" of what is yet to come as far as managing other people's reactions.

Even today, I was on campus at our local state college. Joaquin is a guest patient for a Mock Physical Therapy Clinic for the students once a week. I was walking to the clinic and enjoying the sun and the breeze with Joaquin in my arms and he was having so much fun with the wind. He was smiling and sticking his tongue out almost as if to taste the air. A couple of young girls walked by us and caught a glimpse of him and smiled but as soon as they passed by I heard them giggle and say "did you see his tongue sticking out?" It broke my heart a little bit.

So...again....I'm not sure what to do or say.

Happy Day

We celebrated St. Patrick's day yesterday as a family. We took photos, we shot silly videos, drank beer (mama and papa only!) and danced after dinner. We remembered Grandma Eleanor in Heaven. One of my favorite poems is an Irish blessing. I still keep the little card we got at Grandma's wake and it says:

May the road rise to meet you.

May the wind be always at your back.
May the sun shine warm upon your face, the rain gently upon your fields and until we meet again,

May God hold you in the palm of his hand.

The boys with their clover shirts

The China Study

A comment I made on my last post has got a lot of people asking me why we gave up dairy. It was one of the first recommendations made to us by the professionals at the Institutes. They have a whole day devoted to achieving physiological excellence during the lecture series and nutrition is a huge part of that. They have been witness to some amazing transformation in their children based on the elimination of dairy alone. There are way too many reasons why we decided to give up dairy and I really don't want to start a debate on my blog about it because that's not what this is about. All I can say is that I have done my research and I feel absolutely confident in our decision to eliminate dairy as much as possible from our diet. Again, we slip up at times and my older boys occasional have it at other people's homes or at school but at our house, you will not see any milk or dairy products in our refrigerator.

For anyone interested in the science behind the reason why "dairy is scary", I urge you to read The China Study by T. Colin Campbell. It is one of the best books I've ever read. It changed my life. It is such an important book. I believe that this should be required reading for every health professional around the world, especially nutritionists and doctors who deal with cancer, heart disease and diabetes. PLEASE, go out and buy this book! Check it out at the library if you want to save money. If you don't have time to read, get the book on tape and listen to it on your commute or on your next road trip. It is a remarkable book.

Breakfast Club

Here is a typical morning as I get breakfast ready for the boys. Joaquin sits in his Stokke chair like a big boy. He LOVES to be a part of the action.

Me and My Shadow

Joaquin discovered his shadow this past week now that the sun is shining again! Here he is on my parent's deck. He loves to wave his hands and watch his shadow move. It's simply adorable.

Mark Your Calendars!

The National Down Syndrome Congress' 37th Annual Convention is going to be right here in my own backyard....SACRAMENTO!!!! I am so thrilled. This will be our first experience and I am sooooo looking forward to it! Our own local DS chapter, the DSIA, will be helping with the event and they need approximately 300 volunteers from the community.

So....mark your calendars!!! The dates are July 31st- August 2nd, right here in downtown Sacramento at the Convention Center. Anyone who lives in the area and doesn't plan on attending the conference should PLEASE volunteer to help out. For anyone interested in volunteering their time, please go to Volunteer Sign Up Form. We want the experience in Sacramento to be a super positive one.

To all my fellow bloggers, I can't wait to meet you! Please let me know if you are coming into town for the conference and if you have questions about the area, places to stay, places to eat, family friendly adventures, etc. I would love to host a little get together to meet you all, so as it gets closer we should all get in touch with one another. How fun would that be?!?

30 Meters and Counting...

He DID it!

Joaquin has a crawling victory! He has achieved his goal of crawling 30 meters a day. He is also crawling over obstacles like rugs and piles of clothing. This is one of our goals for his Intensive Treatment Program at the Institutes so I have emailed them with the good news and look forward to their response and whatever new goals they will have for him. I'm sure it will be an increased distance with the goal to creep on hands and knees....we'll see!

Another one of his goals is to stand assisted for 30 seconds. We put him in a sit position and then after he grabs our thumbs, we pull him up into a stand position. He has been able to do this for quite some time. Often times, he'll go for up to a minute holding on to our thumbs. So, we just try it every day, a couple times per day to build his endurance.

Way to go Joaquin!

People

This weeks People Magazine has a great little article about a dance class for children with Down Syndrome. It is such a positive, lovely article with some adorable pictures of boys and girls dancing and posing. I LOVE it! Check it out if you can.....and look for the Joaquin look-a-like! There is a little boy on the opening photo that looks like Joaquin in about 8 years...DARLING!!!!

On the Move

Here he comes.....

The Upside of Down

Things are looking up. Joaquin is still battling some congestion but after two rounds of antibiotics back to back, his ears look good. He is eating again and seems to be in the midst of a reawakening of his senses and his abilities.

It's funny how life is so up and down. One day is great, the next day not so much. Bumps in the road. Tripping on our own feet as we make our way down this unknown path of raising a child with special needs. One thing is for sure, I am completely exhausted and worn out at the end of the day but I have an endless reservoir of energy when it comes to Joaquin. I don't know where it comes from but I'm so grateful for it.

We got an email this week from our local DS organization about a Spanish speaking couple at a nearby hospital who had a baby with DS and they were looking for a peer to talk to in their native language about their fears and concerns. Hector was generous enough to take the time to call them and help them through their initial shock at the hospital. We might be meeting with them this weekend at the hospital as well. It feels good to help other parents out but I found myself worrying about them and worrying about the baby. Would they get all they need for their child? Would their language barrier hinder them in getting all their benefits and services? They live out of town and I'm not familiar with where they live so I just hope and pray for them and their child that they get what they need. I need to find out if the books that were my lifeline are published in Spanish....Gifts, Road Map to Holland, Expecting Adam, etc. I am stressed about their situation and want to help more but I have to take a step back and trust that there is a system in place that will make sure they are guided on their path. We can only do so much. Our plate is pretty full.

Joaquin has a full schedule these days. We've taken a step back on the Institutes program while he's been sick the past 5 weeks so we will start that back up little by little this week, adding more and more of his program as he feels better. In addition to the program we do at home, he receives Physical Therapy twice a week, one time at home and one time in the water. He receives Occupational Therapy one time a week. He receives Music Therapy one time a week. He receives Speech Therapy once a month and Hector and I are currently taking a "Hanen Method" class once a week that is teaching us new ways of communicating. It's quite busy. Borderline crazy busy when you add in both boys school schedules with drop off and pick up, Diego's after school art and science classes, Diego and Mateo's gymnastics classes and T-Ball practices and then Diego's swim team starting up at the end of the month....oh yeah...and mom and dad training for a marathon in June.....oh my goodness!!!

Joaquin is beginning to eat again....thank goodness!!! He is also starting to use his index finger and thumb to pick up his brown rice puffs on his high chair tray. He hasn't figured out how to bring them to his mouth but he sure loves picking them up and dropping them all over the floor. These puffs are great and a perfect solution since we can't do Cheerios yet due to the wheat in them. Despite his congestion, Joaquin looks great these days. He looks more and more like a big boy every day. He's still such a baby but I can see him coming into his own. It's so very exciting.

Frustrated

I'm a bit frustrated right now. Joaquin seems to have taken a step backward with eating solids. For a short time, he was doing great and eating solids about three times a day, about 16-20 ounces. Now, he is barely taking in a few ounces of solids a day.

He will open his mouth, making chewing movements with his mouth and then happily spit it out or let it drool out of his mouth. He does this all with the biggest grin on his face which is adorable but I'm still frustrated. He was doing so well before he got his ear infections.

Maybe he's teething, maybe he still has some residual pain from his ear infections, maybe his stomach is upset from the antibiotics that he's still on. Who knows?

He still nurses like a champ and we will continue to do this until he can eat solids consistently but at this rate, I feel like he'll be nursing forever. I know I need to be patient but feeding children is one of those basic needs things that a mother feels completely responsible for and right now I feel like I'm failing.

So....I'll keep trying. Every day. And I'll keep wiping up the green beens that have been sprayed all over my clothes, his high chair and the kitchen walls. I know he'll figure this out. Eventually.

Hands and Knees

Our boy is on his hands and knees!!!!

Joaquin has been getting around lately by army crawling or what his brothers call "inchworming". He gets everywhere he wants to and it's definitely time to babyproof the house. He LOVES the bathroom....must be the tilework in there. If he hears the shower, he wants to be in the bathroom. This baby loves the water. He loves hanging out in the boys' room too (there is a lot of action in there) and if there is a cord in the house, he's got it...hence the need for babyproofing.

He's mastered movement for the sake of transportation and it's so exciting for us. We were able to take down the ramp and reconstruct his nursery. He doesn't need the ramp to motivate him to move. Yahoo!

Then, just this week, the week of his one year birthday, he is getting up on HANDS AND KNEES! He hasn't actually creeped this way but it's oh so close. He will get into position and rock a little bit and plop down again. The fact that he is lifting his belly off the ground is terrific.



With his first birthday also came Joaquin's first official illness. He has had two ear infections, two doses of antibiotics and about 3 weeks of interrupted therapy. Poor baby! It seems that the tubes that were placed a few months ago were a blessing and a curse. He can hear now with no problem but now he is predisposed to infections. Bummer. Since he's been sick, he has been sleeping a bit more than usual and has not been eating as much but this hasn't stopped him from continuing to develop. Our goal with the Institutes is for him to move 30 meters a day, and I think we'll be calling them in a week or two to say that the goal has been achieved. We aren't due back until August so we are THRILLED to have to revise his physical goals ahead of schedule.



Every day seems to bring some new development in Joaquin. He is more social than ever, super giggly, has discovered his yelling voice (he's gotta keep up with his brothers somehow!!) and he is reaching out to his favorite people with his arms up in the air.



Here are some photos of Joaquin on his actual birthday trying his first ever vegan carrot cupcake- bought at the local co op since my version of it completely flopped one hour before the party started. We celebrated with our family and a small group of close friends at our local pizza parlor, Luigi's by the Slice, and ordered the "Joaquini Special" (a no cheese, pesto, veggie pizza), and Hector showed a slideshow of our year with Joaquin on the big screen. It was a wonderful night to celebrate a wonderful year.



This last photo is of Joaquin in his PJs right before bed playing with the strings on his balloons. He was a very happy boy.

A Story to Share

I must share this story, this true story, that I found on a fellow bloggers site called "Bridget's Light" living in world of possibility. This story written by Candee a couple years ago is a perfect illustration of how we can change the world with just changing our perspective. Here it goes....

A Story about My Two Daughters

How to Live in the World of Possibility

By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Copywrite 2006, Candee Basford

Happy 1st Birthday!

To my dear sweet Joaquin,

Happy Birthday my love. My baby boy. You are one year old today and I remember the day you were born so clearly. It has been one amazing year.....so quickly it has passed yet so much has transpired that it feels like a lifetime ago.

When I look at this picture of me carrying you in my belly, I can't remember who I was then. I have changed so much as a result of your birth. So much for the better. You bring out the best in me and continue to challenge me to look inside myself and find the truth. The truth and beauty of imperfection. The sweet surrender to simplicity and the simple joy in the here and now.

Your presence is our present....our greatest gift. Thank you for blessing me, your dad and our family. You are so loved.

Mama

25 Things....

25 things I love about you Joaquin....

1. Your smile.
2. The color of your eyes...a combo of gray, blue and green.
3. Your eyelashes...black and slightly curled.
4. The way you light up when you see your brothers.
5. When you reach out your arms to me.
6. When you play pat-a-cake.
7. Your soft belly when I kiss it.
8. Your giggle.
9. Your wrinkled palms and soles of your feet.
10. Your starfish hands.
11. The way you inchworm around the house.
12. When you tap your toes on the floor.
13. When you wave bye-bye!
14. Your baby chatter.
15. When you dance to the music.
16. Your sweet disposition.
17. When you get grumpy.
18. The way you tuck your hands and feet under us when you sleep in our bed.
19. When you fall asleep on my shoulder or on your Papa's chest.
20. When you squint at the sun.
21. Your soft fuzzy head and the way you tilt it when you are shy.
22. Your chubby cheeks.
23. Your button nose and your two tiny sharp teeth.
24. Your wet kisses and sweet baby breath.
25. Your gentle soul.

A Letter from Big Brother Diego (age 5)

Dear Joaquin,

Baby, I like you so much because you are so cute and fuzzy. I am happy to be your big brother. I like to play with you and put your toys in front of you so you can crawl to get them. I like to call you “Softy” because you are so soft. When you grow up some day, I’ll miss you as a baby because you are so cute. When you are 5 years old, I’ll be 11! I want to teach you how to play soccer, basketball and baseball. I love you very much.

Diego

Baby Steps

A moment of sadness. It was a very quick fleeting moment but I had it nonetheless. I'm not sure what it was exactly but I felt it and then quickly it was gone.

I attended a preview music class at our local Gymboree. I did many of these types of classes with Diego and Mateo when they were young and it was a fun way to meet new parents and babies around the same age. This was my first time taking Joaquin to a formal class setting where I didn't know the teacher or at least one parent in the group. I am a member of a local parent's group in town where I attend lots of different play groups and events with parents and children that I know quite well but I wanted to try something new with Joaquin, to take a step out of my comfort zone.

This Gymboree music class was unchartered territory for me, a brand new experience for the two of us....our first step toward full inclusion. Why not take him to a "typical" music class for a baby his age? I signed up for a free preview class while Diego and Mateo were both in school. It was a great class and the teacher had an amazing voice. At the start of the class, we sat down to smiling faces all around, lots of cute babies and moms. The teacher started off with a welcome song. It was then that I felt a pang of emotion. I began to tear up and I'm not sure why. I would call it a moment of sadness but maybe it was just a moment of all sorts of emotions wrapped up into one....fear, anxiety, sadness, shyness, pride, hormones? It's moments like these where I am faced head on with the reality that I am on a different journey than most of the people around me. It can feel very lonely. On the one hand, I want to include Joaquin in as many of the same experiences that I participated in with Diego and Mateo and then at the same time, I see a benefit to attending classes or events surrounded by parents who understand our situation and are "walking the same walk" as I am with their own special children. I can see how both scenarios could be beneficial.

Throughout the class, Joaquin was mainly interested in looking at me, watching my face. So I just immersed myself in the moment and it was as if it was just the two of us in the class. Occasionally a mother would ask me "How old is he?" or "He's so cute" and I would return with my own curious questions about their little ones but otherwise it was a special time for Joaquin and me. Focusing in on Joaquin grounded me and I felt more stable in my emotions....I was able to hold it together but a very small part of me just wanted to get out of the room and back to our comfort zone. We stayed and we ended up having a wonderful time. We focused on the moment and living it. The here and the now.

When I try and get to the root of what my feelings were during the beginning of class, it's really hard. I think I've been living in sort of a protected bubble this past year. I've surrounded myself with my support system of friends and family and neighbors, even fellow bloggers, and it has all been a very safe place to be. As I start to venture out into the world and as I take the steps that need to be taken for Joaquin, I'm a bit afraid of what might be out there. I'm afraid of the ignorance and the cruelty.

But maybe the tears that started to well up in me as the Gymboree class sang out Joaquin's name and we sat there, the two of us happy and healthy and living our lives, were also tears of hope. Hope that perhaps everything will be o.k. We were taking our first baby steps together.

Baptism

Joaquin was baptised on December 21st at Sacred Heart Church in Sacramento. Many of our friends and family were with us to celebrate this special day. Jose and Virginia are dear friends of ours and we are so happy they agreed to be Joaquin's Godparents. Hector and Jose have been friends for a long time when they met in Mexico City. They are a very special couple, so full of love, and they have always been so kind and caring to all of our children.

Joaquin wore a baptismal gown that was handed down by my Aunt Giovanna from Italy. It is over 50 years old and was handmade in Italy. All three of our boys were baptised in it. It's the only time our boys have worn a "gown" and all three of them looked beautiful in it. Little porcelain dolls.

We had a beautiful brunch after the ceremony at my parents house. Even with the rain, it was a perfect day.

We are so grateful to God for giving us the gift of our son Joaquin.


Jose (a.k.a. Pollo) and Virginia, Joaquin's Godparents.


Joaquin ready for his big day and wearing his cross from Pollo & Virginia.


Joaquin with his Godmother Virginia.

Bye! Bye!

Joaquin is waving bye bye and it is the cutest darn thing you've ever seen!!!! I will try and catch it on camera and share it here on this blog. Oh my gosh, it makes me want to cry it's so sweet.

I have to hold his arm up for him most of the time to help him focus on waving but with lots of practice it's coming easier and easier for him. I'm so proud! I think he's proud of himself to, you should see the grin on his face when he does it.

The Year My Son and I Were Born

Kathryn Soper wrote a memoir about her first year mothering Thomas, her son who has Down syndrome. It's titled The Year My Son and I Were Born, we can't wait until it comes out in March. Here is a little promotional montage she put together. Kathryn Soper is the mother behind the "Gift" book and "Gifts II" that is coming out later this year or early 2010 which one of our essays is included in. Very exciting!

The Future of Prenatal Testing

Where are we going with prenatal testing?

Once again, a fellow blogger has posted a subject that I think about, talk about and write about all the time with people. Please see this post for a most amazing look at the topic of prenatal testing- question of life or death. Malakai's mom takes the words right out of my mouth. I was in tears after reading it.

Just the other day I got an email from a friend who wanted to know more about the startling statistic that I've written about in the past....that 90-91% of pregnancies are terminated when a diagnosis of DS is given after an amnio. This friend of mine asked if the statistic is slightly skewed by the fact that most people who get an amnio are more likely to terminate anyway, hence the reason they are having the amnio. It's a good question and makes some sense but it's still horrifying. I believe this is one of the biggest areas of discrimination still remaining in our society. Life or death decisions are being made based upon a diagnosis that is hugely misunderstood. Please look at my Joaquin. He is the child being aborted.

I also have friends that have brought up the fact that maybe not every parent is equipped to handle a diagnosis of DS therefore it is in the best interests of the child that he be aborted rather than have parents that are afraid or incapable or just plain don't want a child with a disability. I really don't know what to say to that. Like Malakai's mom mentions in her post, what if your child is born "perfect" but suffers a trauma at birth that leads to brain damage? What if your child is hit by a car and will never walk or talk or is now mentally disabled? Are these parents that would have otherwise terminated a child with DS going to fail as parents now? Probably not. I would hope they would rise to the occasion and do what was needed for their hurt child because it is their child. Right?

What if they develop a prenatal screen that tests for autism? for depression? for ADHD? for bipolar disorder? for leukemia? for diabetes? for obesity? for breast cancer? the list can go on and on. Would it be ok to abort based on this information? Where are we going as a society with this kind of testing? I cringe to think of where we are headed.

I am passionate about this topic. I feel moved in ways I cannot explain to reach out to the world and make a change. I don't know how I will do this but I know that I have to. Joaquin is the most amazing child and has every right to be here. Please tell me, what human being is perfect? who would want to live in that world anyway.

My sister in law, Jennifer, just emailed me this creed and I think it explains it all....

THE DIVERSITY CREED
By Gene Griessman © 1993

I believe that diversity is a part of the natural order of things—as natural as the trillion shapes and shades of the flowers of spring or the leaves of autumn. I believe that diversity brings new solutions to an ever-changing environment, and that sameness is not only uninteresting but limiting.

To deny diversity is to deny life—with all its richness and manifold opportunities. Thus, I affirm my citizenship in a world of diversity, and with it the responsibility to….

Be tolerant. Live and let live. Understand that those who cause no harm should not be feared, ridiculed, or harmed—even if they are different.
Look for the best in others.
Be just in my dealings with poor and rich, weak and strong, and whenever possible to defend the young, the old, the frail, the defenseless.
Avoid needless conflicts and diversions, but be always willing to change for the better that which can be changed.
Seek knowledge in order to know what can be changed, as well as what cannot be changed.
Forge alliances with others who love liberty and justice.
Be kind, remembering how fragile the human spirit is.
Live the examined life, subjecting my motives and actions to the scrutiny of mind and heart so to rise above prejudice and hatred.
Care. Be generous in thought, word, and purse.

Time flies.....

A post from Hector...

I can't believe it has been almost a year since Joaquin was born. It feels like he has always been a part of our family, I can't even remember what I was like a year ago.

What were my thoughts and what were my hopes?

Mateo will be 4 in a couple of days and Diego will turn 6 in April. Time flies but one thing is for certain, Joaquin's first 11 months feel like a lifetime in all respects.

We cried a bit but we laughed even more. We ran around different places and so many appointments but we sat and gazed at him in astonishment even more. We had countless sleepless nights but with him by our side it felt like such a blessing, listening to him breath knowing that he has nothing to worry about. He will be loved and cared for. Then, in the morning when he wakes up between Jen and I, he smiles, and you know what real love is.

Kindred Spirits

Often on this journey of mine, I am inspired by all the other mothers and fathers of children blessed with Down syndrome. I have had the pleasure of "meeting" them through their blogs and sharing in their journey. Just today, I "met" a mother that I feel could be my kindred spirit. Everything she writes speaks to me as if they were my own words. Even her son, Malakai, could be Joaquin's brother. Her blog can be found at malakaistow.blogspot.com. I have enjoyed every word I've read on her blog and I am overjoyed to see that she is looking into the Institutes in Philadelphia. I believe she lives somewhere "down under" but I haven't confirmed exactly where yet. I wish I could hop on a plane and meet her tomorrow.

On her blog, I came across a letter that she found in a local DS newsletter. I must share this letter because I feel the very same way about Joaquin. Another kindred spirit, these father's words could be my own.

"Always Reaching" written by a father of a child with Down Syndrome:

From the STL DS Newsletter
by Matthew’s Dad

Every time I see my son, I reach for him.

It doesn’t matter if he rounds the corner 4 seconds after I have seen him last, or if I am picking him up from school and have not seen him for hours…I reach for him.

I can be 1 foot away or 100 feet away…I reach for him just the same. I reach for him with my arms, with my eyes, with my heart.

I wonder sometimes what I am reaching for.

I have seen this in other people when they see my son.

My family, my friends and perfect strangers. They all reach for him.

I see the same movements, the same gestures, the same need to hold out their hands for him. They want him to come to them, some know him and some don’t. Some call his name and others just motion for him. But they all seem to want him to come.

For a moment, you can see his spirit reflected in their faces. I watch the smiles grow across their faces with a fullness that is unavoidable.

When he falls into their arms (which is what he does to everyone), I see a momentary peace envelop them, and their eyes close, they pull him in and they experience what I call “The Joy of Matthew”.

He gives it to you. He wraps you in it. He wriggles and squirms and mashes the love into you. If you did not know what to expect, you may be surprised and find yourself amazed at the feeling, overwhelmed at the emotion he carries with him.
I am lucky. I get to hold him all the time.

And I have been able to think about that feeling and where it comes from and what it may mean. I think Matthew is a window through which we see a pureness of emotion… pure happiness, pure sorrow, pure joy and pure love.

Despite what some may think, our special children are closer to God than we are. We see so much in them that we lack. We wish quietly in so many ways that we could be more like them. And when we hold them, if just for a moment, we feel closer to God.

That must be why I am always reaching for my son.

That must be why they all reach for him.

Gratitude

Goodbye 2008....welcome 2009!

What a year it has been. One that I'm sure we will look back on for the rest of our lives. It was the year our lives were changed profoundly by the addition of our third son.

Let me share my thoughts of gratitude as the first day of 2009 comes to an end.

I am grateful for my husband who is so patient with me.
I am grateful for my children who give me so much love and joy and test me constantly and help me to be a better person.
I am grateful for our family, our friends, our neighbors, our community who have helped us in ways too endless to list here.
I am grateful for our home and it's coziness and closeness and the memories that we are creating in it.
I am grateful for our stability in terms of having a steady income from Hector's job and my ability to stay at home with our children even in these tough financial times.
I am grateful for our health.

My resolution this year is to live life one day at a time, to be present and to enjoy the simple things. I have made this resolution in the past and it has always been a challenge but I have a perfect example to follow and learn from now. Joaquin reminds me daily of what is good in this world. His constant smile cheers my soul and melts my heart. I know he has the same effect on Hector and the boys. In fact, he has the same impact on everyone he meets.

Happy New Year and may 2009 be filled with peace, love and joy.

Christmas Card 2008

Here is the photo we chose for our Christmas card this year. It was a last minute decision and it wasn't the best photo of all the boys but try getting three boys to cooperate during a photo shoot. Impossible!! We chose this photo because the baby's smile is so contagious. You can just see the love of life in his face. Diego is thoughtful as usual (although he doesn't like this photo because you can't see his whole face) and Mateo rarely smiles for the camera so his is par for the course. I love it just the same!

I have yet to get all the cards out to everyone and Christmas has come and gone so just in case... Happy Holidays to everyone!

Baby's First Christmas

Merry Christmas Eve. May all your hearts be warmed by your family and friends at this beautiful time of year. Our hearts are full of love this year.

Results

While we were at the Institutes, Joaquin was re-evaluated and received a new treatment program that we will be doing for the next 8 months. Like Jen mentioned in the previous post, it is an intense program that still consists of some sensory stimulation, but the key parts this time are the intelligence program, masking, crawling and hopefully creeping on hands and knees soon. A big part of it will be a reading program with some math and encyclopedic knowledge. We are able to start the intelligence program since Joaquin's vision is now perfect for his age. Even though his convergence is still not resolved, he is able to use both eyes consistently and we should see some big improvements with his convergence in the next few months.

We met with Susan Aisen on Monday, she is the director of the Institute for Intellectual Excellence and is one of Joaquin's advocates. We walked into her office and the first thing that she said was that sometimes there is not a match between a family and the Institutes or that sometimes the program is too much for families or the communication between the Institutes and the family is not working out. At that moment my heart stopped, I honestly thought that she was going to let us down gently and tell us that we weren't a good match and could not continue working with them. But then she mentioned that we had been accepted to be in the Intensive Treatment Program and that they were thrilled with our progress and dedication. The last six months we've been in the Aspirant Program, it is basically the same program but it's a trial period to make sure that this is the right thing for our family and that we can work together. We were very happy to hear that we had been fully accepted into the program!

One of the things I love about the Institutes is how positive they are. Most of the staff have been there for decades and have seen thousands of children get better and amount to great things. They can barely contain their enthusiasm as they tell you the success stories and how you can do so many wonderful things for your child with their methods. Can you image going to your pediatrician and hearing you can make your baby with DS well with certain therapies, does that sound likely? It is so incredible that doctors focus so much on diagnosis and the symptoms instead of therapy or what is available for parents. Most professionals are busy telling you all the problems that you have to face and all the dire predictions of a life with a child with Down syndrome. The biggest hope you get from them is that people with DS can hold very simple, basic jobs and can possibly live semi-independently in a group home situation. They say it with a smile on their face as if we are supposed to jump for joy. I don't know about you but I will not settle for that, to me that scenario is a failure on our part as parents.

Children with Down syndrome were not always treated at the Institutes. They were included as a result of the work of Dr. Raymundo Veras, a brilliant doctor in Brazil who first found the Institutes while looking for help for his son who became quadriplegic after a diving accident. He later founded a branch of the Institutes in Brazil and it was the first place to begin working with children with DS. He convinced Glenn Doman (the founder of the Institutes in Philadelphia) that his methods worked for these children. Dr. Veras treated thousand of children and his legacy is so big that they started calling the children "Veras" kids instead of children with Down syndrome. He died in 1975. In his book, "Children of Dreams, Children of Hope", Dr. Veras writes about the Institutes and how he met Glenn Doman, but more importantly the second part of the book is about "How to Make Mongoloids Well." The word Mongoloid today is unheard of but one must take into consideration that this was written more than 30 years ago. It is amazing to me that the Down syndrome community isn't more aware of his work and the successes his children were able to achieve. Here are some of the questions he answered in the book:

What is the major cause of mongolism? I believe the major cause is prenatal brain injury.

What area of the brain is injured? I think the injury is in the midbrain and the cortex though I'm not sure. I know that the mongoloid brain looks different than the average brain. Surely our concern should be the material and the quality, not just the appearance. So if you ask me if I know without question that all mongoloids brains are injured in the very same way or in the very same place, then I would have to answer. "No, I do not know this." And though I think those are important questions that require answers. I don't think that mongoloid children need to wait for the answers before they are helped. The most important question is whether we can improve the children's mental and physical conditions. If we can change the mongoloids conditions then he moves out of the deficient category and into the brain injury category, which is a much nicer and more hopeful place to be. If you ask me if I am positive that mongoloids are brain injured in the classic sense, I have to answer. "No, I am not". But if you ask me if I am positive that they are not deficient. I'll answer, "I am almost positive that they do not have deficient brains" I do not have the slightest doubt that they can be helped, for I have seen their lives enhanced and their abilities improved. I have seen them enter normal school with normal children. I have seen them become normal people.

Are the conditions of mongoloids hopeless? I have spent the last sixteen years of my life-seven days a week, eighteen to twenty hours a day- living intimately with brain injured children and their problems. I can never understand how some doctors can make the most devastating predictions about a child's life. In the past, mongoloids have been victimized by reasoning such as, "Mongoloids are mentally retarded, mental retardation is an incurable disease; therefore it is impossible to make mongoloids well." That line of reasoning makes me want to vomit. That line of reasoning turned brain-injured children into mongoloids

Are mongoloids mentally retarded? This is a question of false nicety. By merely asking it, one implies that mongoloids are not bright. Would one ask if normal people are mentally retarded? Of course not. Then why ask if mongoloids are mentally retarded unless one believes that the answer is yes. Well, it isn't yes. The answer is NO. Mongoloids are not mentally retarded about the world, the world is mentally retarded about mongoloids. The truth is, most mongoloids are very bright children who happen to be brain-injured.

Are most mongoloids in worse condition than other brain-injured children? In many ways mongoloids are often in much better physical and mental condition than many other brain injured children. Mongoloids are not crippled as athetoids. Their actions are not as repetitive as are the autistic child's. Their muscles are not rigid, and in most cases they are very bright children.

Should parents be satisfied to let a child develop at his own rate of speed? Only if they do not want him to become normal. The brain-injured child's best chance is his parents dissatisfaction. Their unwillingness to accept his condition as unchangeable is often the only thing that saved the child's life. I use to hear about Freudian attitudes such as "Don't be 'pushy' parents or your child will have emotional problems". Mongoloid children cannot afford emotional problems. When have you heard of a mongoloid with emotional problems? Let's make these kids well, and then we will worry about their emotional problems. It is easy to fix the emotional problems of well kids.

Do parents of mongoloids have emotional problems? I hope so. I hope their biggest emotional problem is that they love their child. However, if that question means, "Do they have psychological hang-ups?" then I would answer, they certainly should have. If they have a hurt child who is not getting better, and if his chances of getting well are becoming fewer and fewer and smaller and smaller every day, and if the parents are not psychologically disturbed, then something is very wrong with them.

And it goes on and on, I find his work fascinating and thanks to him Joaquin and other children with Down syndrome are on their way to wellness.

On a side note, you notice that he uses the word "Mongoloid" instead of "Down syndrome", even though he thinks mongoloid is a rotten label, one that is inappropriate and demeaning, he says that Dr. Langdon Down's only contribution was to simply list out how these children are different from "typical" children. Down syndrome was not meant to be a diagnosis but just another label, like mental retardation or cerebral palsy. Down syndrome is not a diagnosis, it is a description of the symptoms or the results of a mental problem. I do not find that Down did anything to make these kids well, he merely listed the things that were wrong with them. Whenever we heard staff at the Institutes talk about Veras kids, we couldn't help but feel a sense of pride and hope in that description.

Now for the Results:

Directors Statement of progress to date

1. Neurologically: This period Joaquin has made excellent improvement in quality and quantity. Overall his growth rate compared to beginning was 256%.

2. Developmentally: Height=good. Chest=excellent. Head=good.

3. Practically: Mom is good. Dad is good.

4. Clinically: The staff feel his improvement is excellent.

5. Goals: 1. Physiological = Good, 2. Intellectual = Good, 3. Physical = Good.

6. Victory: (i.e. crawling, reading, etc.) Not this time.

Measurements: Height rate of change was 86.4%, Chest rate of change was 128.2%, Head rate of change was 80.0%.

What does this mean? Well, as you can see his chest grew at an accelerated rate due to the increased movement going down the crawling track over and over again. Now with the new program and his more intense Intelligence program, we will hope to see a significant jump in his head growth.

This has been a long post but I have one more thing on my mind. Every time we go to Philadelphia we get to meet the same group of people and sometimes a few new families. It is a great joy to see the other kids and their progression and talk about the trials and tribulations of being an Institutes Family. It is outstanding that most of these families come from far away, many from Europe, Latin America, Singapore and some from the far or middle East. There are a few American families as well and one common question we keep asking each other is "How did you learn about the Institutes?" The answer is different each time, and it is amazing to me that most of the time it is by chance or from a desperate search for answers on the Internet. That moment in time when they make the decision to learn more about the Institutes is one that changes the family's life forever.

Why do we share our story in this blog? At first because we wanted our family and friends to know how Joaquin is developing, but now we hope that there are other families that could benefit from our experience. We are not saying we are experts, but if we can help and support each other, and at the same time rejoice in each others victories, we can all benefit. Our hope is that it will enrich our lives and the lives of others. After all, we are all in this together.



Baby Bear Joaquin on our way to Philly on the plane.


Maxima is 3 years old with Down Syndrome, she is sooo cute!


Thanks to Abuela Lucha for being so patient and taking good care of Joaquin.


Joaquin having fun in the snow.


Trying to take a group photo with our host family. Many thanks to the Kriger family for their hospitality, they are such a lovely family.


Mama having fun with baby...until he has had enough.

A Breath of Fresh Air

Wow.

On Friday, at the Institutes of the Achievement of Human Potential, Hector and I attended a lecture on Intelligence and were told that "Veras" kids (that's what they call children with Down Syndrome) are EXTREMELY intelligent. They mentioned that Veras kids are some of the brightest kids they work with and that the professionals have it all wrong. They are NOT mentally retarded. Not at all. They are perhaps too witty at times and this can lead to behavior problems because they are so smart and they know how to manipulate their parents and other adults with their charm or by playing the "baby". And some adults fall for it because they assume the children are "mentally retarded." The staff at the Institutes do not consider children who can read and do math at age 3 and have incredible encyclopedic knowledge to be "mentally retarded", they consider them gifted and talented human beings.

It was Susan Aisen speaking to our group. One of our favorite people at the Institutes that happens to be one of Joaquin's advocates and she has worked with children with DS and other brain injuries for over 30 years in Philly. She has walked the walk so she can talk the talk.

Hearing this was like taking a deep breath of fresh air. I can't tell you how inspiring her words were for us. We needed this lecture series. We needed to be here. We needed to hear those words from a professional. And we know she is telling the truth. Even at 10 months old, I can see the wisdom in my son. I can see he is bright, eager to learn and full of the greatest potential. All we need to do is provide the opportunities for him to learn and more importantly while he is still so young.

We still have two more days in Philly where we will get our new treatment program for Joaquin. It will include a reading program, a math program and an intelligence program in addition to the physical and physiological programs such as crawling, creeping, patterning, masking, etc. After attending these additional lectures, we are even more knowledgeable about the brain and how it works and how it grows. Joaquin is the perfect age to begin all these programs and he is going to LOVE it! We know he loves to learn and he is so eager for it. I just need to figure out how to keep up with him (and his program!!!) I'm going to need a lot of coffee and a much better organizational system at home in order to get it all done. What is also so great about this is that Diego and Mateo will benefit as well. It's a win win for the whole family.

Patience

So we are getting ready for our second visit to the Institutes in Philadelphia. We leave December 9th and I'm getting together all our documentation, videos and notes to report back to our advocates. I have to admit that it's been hard to keep up with all the things they intended for us to do. Life sometimes gets in the way.

I'm excited for our friends at the Institutes to see Joaquin. He really has accomplished so much in the past 6 months. I still can't believe he will be 10 months old in two days. He is such a different baby than he was 6 months ago but then again isn't the first year of a baby's life the most amazing transformation. I wonder how much of it is just Joaquin and how much of it is the work we've done together.

As I prepare for our journey to the Institutes, I can't help but think of all the things he hasn't accomplished and I know I need to be patient. Things are always going to be a little bit harder and take a little bit longer for Joaquin. It's difficult sometimes to see other children the same age as Joaquin, or even much younger, that are developing and accomplishing things that are taking him so much longer to learn. Even simple things like spoon feeding which is a big effort for us and comes so easily and naturally for others. Then there is the crawling....Joaquin is still only arm crawling when he wants to but hasn't figured out that it's a mode of transportation. He hasn't really taken off with the skill and I was secretly hoping he would be by now. I look at my niece Jolie who is spoon feeding easily and crawling on hands and knees all over the place and she is 6 weeks younger than him. I'm truly in awe of her ability to do these things and now I appreciate these accomplishments so much more than I ever did before. I just marvel at how easy it comes to her and how hard it is for Joaquin. He works so hard. You should see him pump his legs and arms in the air on his belly as if somehow he will fly across the room. It's adorable but heartbreaking at the same time.

I need to be patient, however, sometimes I can't help but feel like I'm responsible for his delays or that somehow I'm a failure as a mother if he isn't hitting these milestones. I completely understand that every child meets their own milestones on their own timeline but having a child with special needs puts a slight twist on that. It's like a race against time. You don't want your child to fall too far behind.

Despite the delays, I am so proud of Joaquin and we celebrate together every day. We celebrate the little things, the everyday things, small accomplishments and the big ones too. We celebrate how much more interactive and alert he is. We celebrate that he can hear all sorts of sounds....even the scary ones. We celebrate how he flirts from the grocery cart seat at shoppers passing by. We celebrate every little sound he makes, every movement, every single little thing. So even though I still need a lesson in patience, I know I will get there. I have the best teacher in the whole world.

Thank you Joaquin.


Reading his bits of intelligence

Coming down the crawling track

He sees his favorite bits

He is going to get them

Look! it is a surprise face...

I love my bits

Not So Sure About Santa

We were very brave and ventured out to the mall on Black Friday to visit Santa....and there was no line to see him. Very strange.

He wasn't the most convincing Santa and he kinda looks a little sinister in this photo. Joaquin was mesmerized by his beard and had his hands on his face but the photo people (a.k.a. Santa's elves) wanted him to look at the camera. So they proceeded to make a bunch of noise and whistling sounds to get his attention and when Joaquin turned to look at the camera, he looked a bit stunned by all the commotion. No tears were shed but at one point, Joaquin was squinting from all the noise. My guess is he is still adjusting to the increase in volume in his ears. It was also a very stimulating environment with all the lights and decorations.

I would have preferred a shot of him gazing at Santa (how sweet would that be!!!) but the elves wanted nothing to do with that. Apparently you don't have a say as to which picture you get.....as Diego and Mateo would say "you get what you get and you don't throw a fit!"

An AMAZING Teen

I was so touched by this article that I have to share it.

This athlete never fails to amaze his teammates, fans

Is it OK to hope for a story like this to be written about Joaquin someday? But maybe with him in a Jesuit High School soccer jersey? Perhaps a Christian Brothers baseball uniform? Who knows.....all I know is that I can't wait to find out the script for Joaquin's life.

Hearing Update: A New Baby

Here is Joaquin right before his surgery last Thursday. In a nutshell, the surgery was a success. The doctor said that she found lots of thick fluid stuck in his ears. She was able to suction it all out and then placed itty bitty ear tubes to help drain any more fluid that might build up. She said that Joaquin might be extra sensitive to the sounds around him and that he would be hearing clearly for the first time in his life. She said we might even need to keep the cotton balls in his ears for awhile to muffle some of the noise around him.

Joaquin recovered beautifully from the anesthesia and spent a good 30 minutes when we got home exploring every single toy and noise maker in his room on the floor. It was amazing to watch. Then.....his brothers arrived and a whole new volume level was experienced and the tears started. Joaquin is crying like he's never cried before. The sounds are startling and new and maybe even a bit scary for him. And even though it breaks my heart to hear him cry, I smile inside knowing it's because he can actually hear everything around him. We are so happy and can't wait to see the progress he will make now as a result of the successful surgery.

We'll keep you posted. GO JOAQUIN!!!

Joaquin on his way to the operating room....they only had pink pajamas.


Recovering from surgery.

Trick or Treat

Happy 1st Halloween Joaquin! Who needs toys when you have candy? Here is our boy playing with his brother's candy after a fun night with friends around the neighborhood. It was a wonderful night.

Thank you to all our faithful readers for "hanging" with us during this 31 for 21 posting challenge. I'm happy to say we were able to complete the challenge and it was an honor and a joy to do so.

We'll be back....just not everyday!

The night before Halloween!

Last night Jen went out with her girlfriends and I was in charge of 3 kids and the daily post. All 3 kids went to bed like usual, no problem. Joaquin did his normal talk routine right before he fell asleep, very cute. So I turned my powerbook on and started thinking about something to write. I was having trouble thinking of something, so I decided to check some of the blogs that Jen follows. I found this post by Jennifer Groneberg from Pinwheels, the author of the book "Road map to Holland", about a beautiful Down Syndrome Awareness bracelet made by the talented Amy Flege, and she was giving it away to a special mom. All you needed to do was post a comment, so I did for Jen. I thought that it would be a great reward for her special effort to post every day of this special month.

This morning when I got to work, I had an email from Jennifer Groneberg telling me that we won the bracelet. I was so thrilled and I am so excited for Jen to have it. I think she deserves it. So Jen, it is coming in the mail. Thanks for being such a special mom and a loving wife!

We were BOOed!

Tonight the boys and I decided to carve the pumpkins in preparation for Halloween on Friday. Joaquin was in his bouncy seat in the kitchen, Mateo was on a stool so he could watch cautiously and my big boy Diego was elbow deep in pumpkin mush trying to save the seeds for his Papa to roast later on for snacks.

We went out to the front porch to see the finished products in their full candle glory and lo and behold there was a little package waiting for the boys with a big BOO sign on it. Someone had anonymously left a very thoughtful gift bag for the boys with instructions on how to keep the BOO going in the neighborhood. The boys were so thrilled and ran around the house shouting we were BOOed, we were BOOed!!! Joaquin was smiling in his chair sensing all the excitement in the house.

I couldn't help but smile too. We are a NORMAL family! I know this might sound silly and crazy but another one of my early fears after learning about Joaquin's diagnosis was that our family might not be fully accepted in the community or that we would feel isolated and alone. I worried that my friendships would change or disappear. I worried that possibly Diego and Mateo's friendships would be affected. I feel ridiculous writing this now but these were some of the terrible fears that just bombarded me very early on.

Thank God these fears were unfounded and honestly, it's been quite the opposite experience. Since learning about Joaquin's diagnosis, I have felt more of a community around us than ever before. I feel the love and support from neighbors, friends, and even strangers in this wonderful online blog community. I look forward to raising my kids in my neighborhood, literally surrounded by great families with huge hearts. I can't wait to watch all the neighborhood kids grow up together and to have Joaquin be someone they all adore and protect. Suddenly the world is a feeling like a kinder, safer, sweeter place for us to live in.

And all it took was a little BOO sign to remind us of this!

Mr. Blue Sky

I really want to see this movie so I've put in a special request to Netflix to see if they will buy a few copies and make it available to the public.

Here is a synopsis of the movie:

An unconventional love triangle between three childhood buddies; two girls, one born with Down syndrome, and one boy, who all grow up fighting who they are inside, how they are perceived by society as a whole, and who they ultimately strive to become as individuals through the obstacles that are inherently present.

Mr. Blue Sky is a ground-breaking film that explores the romantic relationship of a woman born with Down syndrome and a "normal" male, as perceived by today's society. Mr. Blue Sky attempts to break down society's barriers, much like "Guess Who's Coming To Dinner?" did in the 1960's, as it aims to "change lives" through "changing minds."

Mr. Blue Sky is a heart-grabbing story that will ultimately change the way society views all people as "individuals" first and foremost.

The title is derived from a little girl's hope and love through the sun (Mr. Blue Sky.)

I'm intrigued by this movie. It touches upon some of the early fears I had and still have for Joaquin as he gets older. One of the first things I mourned when I learned about his diagnosis was the idea that he would not get married or have a family of his own. I now know that this is a possibility for him (the relationship part) but I can't help but worry still. I don't ever want him to be lonely. This has to be my greatest fear for him. I don't want him to be isolated or alone in this world. I want him to love and be loved forever so the thought that he might find companionship with someone very special and/or ultimately fall in love would be priceless to me. I will just have to buy this DVD if Netflix doesn't follow through on my request!

This is the website for the movie if anyone is interested in reading more about it: http://www.mrblueskymovie.com

Myth vs. Truth

In honor of Down Syndrome Awareness month, I'd like to take this opportunity to address the myths commonly associated with DS. I copied this from the National Down Syndrome Society website.

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Eighty percent of children born with Down syndrome are born to women younger than 35-years-old. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Women with Down syndrome can and do have children, but there is a 50 percent chance that their child will have Down syndrome. Men with Down syndrome are believed to be sterile, with only one documented instance of a male with Down syndrome who has fathered a child.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

BFF

Joaquin already has a Best Friend Forever and her name is Jolie. They are cousins and are only 6 weeks apart. It's going to be so much fun watching these two grow up together and we know they will share a very special friendship.

Here are a few photos of us....Jennifer (my sister in law- yes we have the same name!) holding Joaquin and I'm holding Jolie, J & J head to head on the day they met (Jolie is only a few days old) and naptime for the two little ones in the same pack-n-play crib.

Nana

There is no denying that Nana and Joaquin have a very special bond. He lights up whenever he sees her and she is the only one that brings out his devilish side! He loves to try and "love bite" Nana- all over her face! He's like a little tiger when he's in her face. We are so fortunate to live so close to my parents and that he gets to see Nana and Grandpa almost every day. He goes through Nana withdrawl when she goes away on vacations.

Here's are few photos taken today with Joaquin and his favorite Nana!

Mild Case of Down Syndrome?

I thought I'd post the most commonly asked question even though I still don't have a clear cut answer for it. Friends, families and strangers always ask me if there are different degrees of Down syndrome- mild, moderate or severe. They'll ask me if there is such a thing as a mild case of Down syndrome. I think people are assuming that Joaquin has a more mild version of DS based on the fact that he was not diagnosed right away, the fact that sometime it's hard to "see" it in his face and the fact that for the most part he's on target developmentally.

Joaquin doesn't have a mild case of DS he just has Down syndrome. I'm really not sure how else to answer this question but it will be one of the first questions I ask next week when we visit Dr. Wardinsky, the lead doctor at the Down Syndrome Clinic at Alta Regional. This will be our first visit to a doctor who deals exclusively with children blessed with a little extra....a little extra chromosome.

There is no such thing as a mild case of Down syndrome- your genes either have three 21st chromosomes or they do not. But how that manifests itself will be different on each and every person and that person may have mild, moderate or severe symptoms. I saw it written somewhere online that it's similar to asking "Are you mildly pregnant?"...you are either pregnant or you're not. Maybe a good analogy is that no two pregnancies are the same.....sometimes you have insomnia, nausea and stretch marks and sometimes you only have weight gain and varicose veins or very few symptoms at all. With DS, no two children are the same, sometimes you have heart problems, typical facial characteristics and low muscle tone and sometimes you only have a few facial features, a little hearing loss, a mild strabismus or very few symptoms at all. One must also remember that the rest of Joaquin's genetic makeup, the rest of the 44 chromosomes have come from his parents so that's why he'll still resemble us and his siblings. He will also possess our strengths and our weaknesses much like our other children do. He will just have additional challenges based on how the Trisomy 21 affects his brain and his body.

Then there is the issue of how much control we have over his sensory stimulation in order to help his brain compensate for any injury caused by his Trisomy 21.....which we've written about in previous posts and is the main focus of the program we are doing with the Institutes as well as the therapy services provided through our Regional Center.

I will always welcome this question because I feel that this is one way that I can help education and advocate for my son and his peers. I hope to learn more every day about Down syndrome so I can share the most accurate information with those around me and increase the awareness. Just a few days ago, I felt compelled to put a Down Syndrome Awareness Ribbon magnet on the back of my car. I've never done anything like that before. Bring it on.....the questions, that is!

Someone to Watch Over Me

Here is an adorable photo of Mateo peering in at the baby in the crib. I think Joaquin was close to 3 months old and Mateo was finally warming up to having a baby brother. I love this photo.

Spidermania

Here is our family of spiders- The Red Spiderman is Diego, The Black Spiderman is Mateo and of course the spider is Joaquin. By the way, I'm truly afraid of spiders....huge case of arachnophobia! It's so ironic that I have a household of boys who are obsessed with them. Diego really wants me to dress up as Mary Jane on Halloween night and he wants Hector to be Peter Parker....we'll see!

Papa's Baby Boy

Looking Back

My Grandma Eleanor passed away earlier this year when Joaquin was about 6 weeks old. I had a very special relationship with my Grandma. She helped raise me as a child when my mom was working as a nurse to put my dad through law school. We even lived with Grandma for the first 3 years of my life in a house just down the street from where I currently live.

I remember getting a phone call from my mom a few days after Joaquin was born, those early morning calls that are always dreaded, that Grandma wasn't doing very well and was in the hospital in Truckee. I knew the moment I got that call that I was going to drive up there with Joaquin to make sure she had a chance to meet him. He was only a few days old but I wanted to see her immediately. Fortunately, Hector was home from work for the week so he stayed with Diego and Mateo so I could go with Joaquin and the rest of my family to see Grandma without the distraction of two little boys running around the hospital.

She had had a rough night so we weren't sure how lucid she would be when we saw her. Fortunately, on the drive up to Truckee, we heard that she was stable and would probably be released back home later that evening so I was able to relax a bit. I had taken special care to dress Joaquin in the softest powder blue baby gown and cap with a matching blanket. He looked angelic. I remembered the first time I introduced Diego to Grandma and had made the mistake of dressing him in jeans and a Stanford sweatshirt.....I never heard the end of it! "Babies don't belong in jeans!" she used to tell me. It was part of her dry Irish humor. I wasn't going to make that mistake again.

I was so eager to see Grandma but mostly for her to meet Joaquin. When I entered the room, she was very surprised to see us and then was a little upset I had brought the baby to the ER where all the "germs" are...."He should be home in bed!" she told me. There was my Irish Grandma. But she immediately softened when she saw him and it was such a special moment when I was able to introduce him to her.

I carefully laid him in her arms, careful not to put too much weight on her, but still allowing her to feel his body in her arms. I don't remember all the exact word she said because I was lost in the moment but I do remember one thing very vividly. She said something about him being beautiful and perfect. She stressed how amazing it was that these little babies turn out so perfect, how rare it is that anything is wrong. I remember agreeing with her as we both just stared and smiled at the baby.

My grandmother lost a baby shortly after birth and she never ever talked about it. My dad had told me a few years ago. I do know that Grandma wanted to see her baby again and talked about him when she was close to passing. I'm sure her comment to me about how rare it is that anything is wrong had a lot to do with her loss. I have to imagine that whenever she saw a healthy baby, she saw a miracle. I can't imagine the pain of losing a child, the pain she must have carried silently with her. I know she loved her grandchildren and her great grandchildren and that we all were a source of pure joy and healing for her.

How I wish I could talk to my grandma now. She passed away a few weeks later. She never knew about Joaquin's diagnosis. I want to talk to her and tell her about it and hear her say to me again that he is perfect and that nothing is wrong. I miss her. I now know just how close to crossing paths their souls were. The full circle of life....Joaquin coming into this world and Grandma leaving us. They had a moment together and I'm so grateful. Her words stay with me. He is perfect and there is nothing wrong with him.

Thank you Grandma. I love you.

Chili Peppers

Diego

Mateo

Joaquin

Mexican Seer

Jen asked me awhile ago to write about an experience we had in Mexico City this summer when we celebrated my parent's 50th wedding anniversary. It was Joaquin's first visit to Mexico and we introduced him to my whole family. I think Jen would agree with me that every time we go to Mexico there is always the next new "miracle" something...the new miracle cream that will shorten or prevent a cold, the greatest new vitamins, a new meditation technique, etc, etc...

This time around it was this new wonderful therapist/psychic/healer/seer. I don't even know what the official title would be for Alejandra. My sister Adriana told me all about the sister of a friend of hers, Alejandra, who has a special gift and devotes her life to helping people. I am not a skeptic by any means, quite the contrary, I am open to all new things. But I am cautious because I tend to be quite gullible. Since it was difficult to get an appointment to see Alejandra and my sister was happy to give us her own appointment so that we could bring Joaquin, I happily agreed to meet with her. To tell you the truth, I was very curious to see what she would "see" in baby Joaquin.

Jen, Joaquin, Diego and I went to see her and she talked entirely in Spanish. She spoke about so many things and it was hard for me to store all of the information so that I could interpret it for Jen later. It was so difficult to remember every detail. It has been more than 5 months since that day and I've never written down anything she said to us until now. These are a few of the things she said to us.

She said that babies with Down syndrome are new souls, and that they come for a reason. Joaquin has a specific purpose in life, and we should never question any of his actions...if he moves a toy to the right, don't move it back to the left, he has a reason for everything he does. I thought that was very interesting, how specific she was about the idea of what his legacy will be.

As far as his health, she told us that he didn't have any heart defects. This was later confirmed by our cardiologist. She said that she saw some congestion in his ears. This too was confirmed by our audiologist. Joaquin has mild to moderate hearing loss due to what we believe is fluid and he will get tubes implanted in November to help resolve this issue. She didn't see any other physical abnormalities in him. We forgot to ask her about his vision and back then his strabismus was not as prominent.

The most amazing thing she said was that Joaquin's soul was so pure that it was overwhelming to her. She said that usually babies with Down syndrome have huge chakras, bigger than normal, but that they are usually disconnected. She said that Joaquin's were big as expected, but they were connected like in a "typical" baby. His flow of energy was pristine and there was no interruption from his brain all the way down his spine. At the time I thought that sounded cool but now it explains why he is extra special, at least to us. He has such a way of drawing people into him.

My sister Adriana later told me that several days after we met with Alejandra, she (Alejandra) was at a weekend retreat and she couldn't stop thinking about Joaquin. She was very affected by him and felt lucky to have been in the same presence as him, someone with the purest of souls.

I believe that all babies are special and that each child comes to us for a reason. I know that Joaquin is no exception to the rule. He will change lives and he will do great things, at least that is what my heart tells me. I know he has already changed Jen and mine and our families and our friends. His story is also touching people around the world who are reading our blog. Diego and Mateo's childhood is also enriched without limits by having Joaquin in their lives. Sometimes I am still afraid of him growing older, I love him as a baby, but I can't wait to watch him grow and become a toddler and to translate to us all those things he already says in his own language. So much to look forward to and we'll take it one step at a time and savor every moment of it.

Our Little Star

Our little baby is a star! Here he is featured on the Parenting.com website. They are featuring pictures of babies and children with Down syndrome all month long in honor of Down Syndrome Awareness Month. Check it out!

A-Special-Joy-17-Babies-With-Down-Syndrome

Down Syndrome Awareness Month

I have tears in my eyes. My faith in humanity is renewed after reading this story. What better way to celebrate Down Syndrome Awareness Month!

Senior With Down Syndrome Crowned High School Queen