Sunday, October 5, 2008

October: Down syndrome Awareness Month (post #3)-How will Ds affect Reid?

How will having Down syndrome affect Reid? This is a question I have received a lot...and decided this would be a great way to dive into the "awareness" part that this month is dedicated to. I actually like when people ask me this, it allows me to share what most don't know unless they are christened into this world somehow...and 21 months ago I wouldn't of known either. This question though will illicit different responses as he grows and enters different chapters in his life, so I will dedicate several different posts this month as to what it will mean to Reid throughout his life, at least as best as I can because Reid of course will be the real author of those chapters. 

For this post however I will answer the question as in...How has 
Down syndrome affected Reid from birth until now?

Muscle Tone: Most babies born with Down syndrome have low muscle tone, which means that their muscles are relaxed and "floppy", it usually affects all the muscles in the body including the mouth so nursing and feeding can be an issue. The low mus
cle tone affects movement and strength so many of the normal milestones like holding up their head, rolling over, sitting, and walking are delayed. Reid has low muscle tone and it took him awhile to enjoy tummy time to strengthen his neck muscles. He was about 8 months old before he held his head up really well, 10 months to sit up on his own...putting him in the "Bumbo" really
helped him in this area I think. He started to combat crawl just before his 1st birthday, crawled upright on hands and knees at around 17 months, pulled himself up to a coffee table at 18 months and started to walk around it while holding on. At 20 months he first attempted to stand up in the middle of the room all by himself without holding on to anything...such an exciting time! He doesn't stand for long, but now at 21 months he is trying to take a few steps. In comparison, just for comparison sake, Luke at 18 months was literally running circles around us.

Therapy: Because of the Down syndrome diagnosis and the low muscle tone Reid was referred to our county Regional Center when he was born and became eligible for services which are all paid for by the state. I had no idea this even existed prior to his birth. We have an occupational therapist come into our home once a week to work on fine motor skills and the muscles from the torso up. She also works on feeding issues, and facial exercises to help build the muscles in his face and mouth. It was once believed that people with Down syndrome had bigger tongues, making it stick out. This actually is usually not the is often because of the relaxed muscles. I am
 so glad our therapist pointed this out to me because we have worked on this from very early on and it has really helped him. The only time he really sticks his tongue out is if he is really tired or concentrating really hard on something. Okay...on to the other therapies. We also have a physical therapist that comes to our home twice a week to work on the gross motor skills, and m
uscles from the torso down. Once Reid is walking we will reduce this service down to one day a week. We also have another therapist who works on Infant Stimulation, the cognitive piece. Because Down syndrome affects the cognitive development we want to make sure we give him as much stimulus as possible and keep pushing him in cause and effect type play as well as sensory play. The pictures in this post are from some of his therapy sessions.

Speech: Babies with Down syndrome also experience delays in speech and language development. Knowing this we have decided to teach Reid to communicate with us through signing. He loves the Signing Time Videos He probably has about 15-20 different signs he uses consistently. We have a pocket chart in the playroom with laminated cards of objects on one side and the demonstration of the sign on the other side...really helpful for mom!! :) I also heard somewhere along this journey that singing to your child is very helpful in language development...well if you've ever heard me sing you would encourage me NOT to sing to him for fear of further delays!!...but luckily the former kindergarten teacher in me has oodles of great CD's that we listen to constantly. So, if you see me driving down the road singing the "Winnie the Pooh Theme Song" or "We're Going on a Bear Hunt" at the top of my's all in the name of therapy :)! We did just have a speech evaluation done to see if he qualified for speech services and awaiting the results. However, I was told during the evaluation that he was scoring so high that he may not be eligible for services. I have such mixed emotions about that because of course I want him to score high but at the same time I know this area will always be a little delayed so I would like as much help as early as possible. This could be a whole post on it's I'll write more about this later in October after I get the results.

Heart and Immunity: Nearly 50% of babies with Down syndrome are also born with a heart defect, many times requiring surgery. Reid underwent open heart surgery in August of 2007 (If you are interested there is a post about it in my August folder with pictures). He was nearly 8 months old at the time
 of his surgery. I was told to expect a new little guy after surgery and they were right. Reid had a hard time gaining weight prior to surgery because his heart was working so hard and burning so many calories. His immunity had also been compromised
and he would often get respiratory infections...because of the heart not working properly his body had a harder time fighting. But, after surgery he is so much healthier and active. He does need to take heart medicine twice a day and is still monitored closely by his cardiologist.

Socially: Having Down syndrome does not hold this little guy back in any way socially. He is so friendly, waving hi, with both hands no less, to everyone in the grocery store or wherever he is... He even reached out to a total stranger at Disneyland the other night to have them hold 
him.  I've also signed him up for several classes through our city's parks and recreation program He has been well received and LOVES being with the other children.

I hope this post gave a little window into how Down syndrome has played into Reid's life so far. He continues to grow and develop and is starting to show his personality...which is so cute!


Kele said...

I love seeing and hearing how well Reid is doing. I think it is great he is getting so much therapy, I hope we are as lucky as you guys when it comes to therapy for Pres.
Great post Cheri and you have much to be proud of in that little guy of yours!!

Nan P. said...

As an “awareness” post, this is very good, simple but to the point. Plus every thing is so positive. If anything, it gives great hope.

Every child is different, and goes at his / her own pace. What is important is that each one is given every chance to go at THAT pace, what ever it is. And you are differently doing that for Reid.

Keep posting, and I’ll keep reading :-)

Heather said...

Reid Rocks!Great post to not only update everyone on how he is doing today but educate people, who don't journey the way we do,how things go down,no pun intended!I think you can do 31 Cheri,don't under estimate yourself!

Jeanette said...

Wow, such a familiar story. Our Sydney is 15 months and I see a lot of parallels. Great awareness post on DS. These are the stories that help people understand. Thanks for your loving story telling.