Monday, October 31, 2011

31 for 21 - Day 31 - Happy Halloween and Goodnight, Moon

What a month.  National Down Syndrome Awareness Month ends tonight and with it, we say, Happy Halloween and Goodnight, Moon.  (I don't actually know why we are saying Goodnight, Moon, but I love that book and I just started reading it to Joey after Tommy finally got sick of it after 3 years of the creepy old lady in the corner whispering hush.  Tommy also informed me that it is oatmeal and not mush in the bowl.   He also told us on Sunday morning that "I'm going to be a bad boy in church today."  He's got a lot to say these days.).  I feel like I've learned so much and hopefully shared as much as possible.  The biggest thing I've learned is how much amazing information is out there.  How many incredible parents, kids, families and individuals who's lives have all been touched in some way by Down syndrome.  We have met some new friends from across the country this month.   We've read some incredible and inspirational books.  It's been an awe-inspiring exercise to blog every single day for 31 days.  I thought I would run out of ideas and topics, but the more I write, the more I find!  

Joey is quick!  He managed to get a bite of one leaf before I could get it away!

One of the coolest parts of this month was hearing from some of the people I wrote about.  As a wanna-be writer and relatively new blogger, you write and you think that no one out there is reading what you have to say.  The awesome people I heard from included George Estreich who wrote The Shape of the Eye.  I heard from Amy Julia Becker who wrote A Good and Perfect Gift.  Rian of Trach Ties sent me a note and I love following her journey.  IDSC for Life and I connected and I am so grateful for their advocacy for people who have Down syndrome.  Mama Lewis wrote and we bonded across the ocean via the world wide web.  I also connected with Doozeedad and now I'm going to lobby to set Joey up with her beautiful Moxie (what a gorgeous little girl and her name--LOVE!!!). Finally, today I corresponded with the Global Down Syndrome Foundation after writing about their Be Beautiful Be Yourself Fashion Show that took place in Denver.  These connections and all of the insightful and awesome comments that the readers left are what have made this such a great October.  

A couple of years ago I did not pay attention to what Down syndrome was.  I didn't know what it meant to have it.  I was blissfully unaware.  Now I am grateful to the world that Down syndrome has opened up to me and my family.  I am humbled by the incredible experiences and stories that I have learned.  I am humbled by my baby boy's progress and spirit.  I used to think that I would never be able to slow down, to make it to all the doctor's appointments, to do all the therapies, but I was so wrong.  It's just our day to day.  It is truly our normal.  Instead of wanting to be normal or wanting to be like anyone else anymore, I'm just enjoying what is our version of it, Down syndrome and all.

Thank you for celebrating National Down Syndrome Awareness Month with Cowgirl Up!

Last drawing will be announced tomorrow for who wins the final $10 Starbucks Gift Card.

Happy Halloween!

Sunday, October 30, 2011

31 for 21 - Day 30 - Autism and Down Syndrome

Working on his oblique muscles!

We had to remove the Kinesio tape off of Joey's back the other night (you are supposed to take it off after 10 days or if it is peeling) and that was a nightmare.  It hurt him.  A lot.  It hurt me.   A lot.  Neither of us were better off for it and I am hoping that next time we will go the slower route instead of my idea of ripping it off fast.  I found out after the fact that slow and steady is a lot less painful than fast and furious.  I think I got overwhelmed.  It was a lot of tape.  When we were all said and done it looked like he had two tribal tattoos on his back.  He is now rocking the Kinesio on his tummy and we think it is working! 

Yesterday he was sitting and playing with toys and went to reach for a toy, which caused him to fold over in half.  Yes, in half.  My husband watched for a minute before swooping in (I've got a big problem with swooping in.  I need to work on it.  I always want to swoop in and not let Joey have any discomfort.  I'm not doing him any favors.  I'm going to work on this bad swooping habit).  Sure enough, Joey was able to pull himself all the way from a folded in half position to sitting.  This probably doesn't sound like a big deal, but it is a really, really big deal.  I can't explain what hypotonia(low muscle tone) is exactly or what it is like to have it,  but our therapists have told us that basically Joey has to work really, really hard at everything he does because he is constantly fighting gravity.  I've also read that having hypotonia makes you feel like you have a 20 pound weight on your foot (or arm, stomach, leg, etc.) that makes it very hard to move against.  To a parent, a child with hypotonia will feel much heavier and like they are going to slip through your arms.  It's something that effects many, many parts of Joey including his swallowing ability, his gross motor skills and even his eyes.  There is no "cure" or "fix" for hypotonia, but hard work and diligence will help Joey work around it.  

National Down Syndrome Awareness Month ends tomorrow and I'm kind of sad about it.  Before it ends, I wanted to write about the tie between Down syndrome and Autism.  Until recently, it was commonly believed that the two could not exist together.  Today, the medical profession recognizes that people with Down syndrome 
may also have a psychiatric-related diagnosis such as ASD or Obsessive Compulsive Disorder (OCD). (See NDSS).  Current estimates are that between 5-7% of people who have Down syndrome also have an Autistic Spectrum Disorder (ASD).  NDSS has a wonderful resource on their website that discusses what to look for as well as a list of other resources.  To learn more about it, visit here

Back in April I was suffering from some bizarre virus that plagued my eyes for about three months.  I had weekly visits to my eye doctor.  This was a couple of months before Joey's heart surgery and the extra appointments were not what I needed at the time.  During one of the visits I found the following book in the waiting room:  Lessons From Ty
As I read it, I realized that the author, John F. Durkin, is my eye doctor's brother.  John is a an Intervention Specialist at Jackson High School in Massillon, Ohio.  His website summarizes the book by saying, "School needs to be a place where all children are welcome to come and share their unique gifts to help each other learn.  Come take and emotional and inspirational journey with Ty and his mom as they navigate their way through the public school system to find the best learning environment for Ty and his special needs (autsim)."

I read the book from cover to cover and I cheered for both Ty and his mom.  I wrote down this quotation from the book in my planner on that April day, "For whoever welcomes a child such as this for my sake welcomes me.  He welcomes not only me, but the one who sent me." 

If you have a child with Autism or know someone who has a child with Autism, this is a really inspirational book.  I am going to use it with both of my boys to help them learn about going to school and about all of the different friends they will meet.  If you are interested in purchasing this book, visit here.

Saturday, October 29, 2011

31 for 21 - Day 29 - O, Brother Where Art Thou?

I kind of have a warped view of playing now.  Many of our therapy sessions involve a sort of "play".  Tommy came with us on Thursday to Joey's therapy and the first thing he said to the therapist was, "Don't hurt him."  What an awesome big brother!

Everything we do I see as a learning opportunity.  I see cause and effect in every little action Joey takes.  I see how he watches his brother, Tommy, so carefully and thoughtfully.  I can't wait for the day he can run after Tommy.  

In the meantime, here they are, hard at play with the most ultimate of all toys. . . an empty laundry basket.  

 Dog Dog peeking out.
 Tempting Joey in with Dog Dog.
 Come and get me.... check out Joey's post-nap hair do.
 Hello, brother.
 Getting closer.

 Almost there!

 Come on Joey!  (One sock on, one sock missing).
 Such a good reach!

 Big boys!

 Got it!!!