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!!!!