31 for 21 Day 3- Answers to Questions! :)

Thank you thank you to the two people who asked questions!!! :)) And they are excellent questions at that. :)
Questions:
Young Christian Woman said...

We are in the process of adopting with Reece's Rainbow, and we fell in love with a little girl who did not have Down Syndrome and are hoping to bring her home next year. One of the things I couldn't find much information on as I tried to research Down Syndrome adoption was what the actual, day to day differences are with a child who has Down Syndrome. I am guessing it's pretty much hard to say because all the kids are so different, but maybe you could try to describe the differences? Thanks!

October 2, 2011 12:00 PM

Anonymous said...

Can you tell me how hard is it to care for a child with down syndrome? How is it different from caring for a child who does not have D.S.? Thank you.

Being that Evan is still young- only 23 months, I may not be able to personally answer these as well as someone with an older child, but I'll start by giving you my two cents worth as far as the day to day differences between children with and without Down syndrome.  The photo above can pretty much sum up how awesome it is! :)


When we are out and about- I still think there are many people who don't realize Evan has Down syndrome.  I was stunned to find this out at the bus stop just a couple months ago when school started this year.  One of the moms who has known our family for three years- has seen Evan daily at the bus stop for a year and a half- had no idea he has Down syndrome.  My point- there are very few differences at first glance between Evan and his 46-chromosome carrying peers, especially at this age.  I do think people may mistake him for being younger due to his smaller size (he is actually very tall for a child with DS but around the 50th percentile on the "typical" growth chart), he isn't walking yet, nor talking.  He's just riding along in the stroller or grocery cart looking extremely adorable and sociable, and people notice his red hair right away. :)

Now as stated in the first question, yes, there can be huge differences across the board in children with DS and how that extra chromosome has affected muscle tone, and whether the child was born with a heart defect or any other major health concerns.  We were the lucky ones- Evan was born perfectly healthy with no heart defects or anything else requiring major surgery.  The above photo was taken at 12 months when Evan had an inguinal hernia repaired and undescended testicle brought down- very minor issues that can happen in the general population as well.  He has reflux which is very common in the general population (our older son had reflux also) and that's pretty much the extent of his medical needs.  He does have regular check ups with a few specialists since children with DS are more prone to hearing and vision problems- he sees an eye doctor once a year and an ENT every 6-8 months to have his ears cleaned out; hearing tests are once a year.  He was seeing a GI doc for his reflux but that has been under control, so we just continue with our regular pediatrician for treatment.  He has been seeing the pediatrician about once every 3 months so far, but I know that will be slowing down after our next visit at 24 months.  He saw a nutritionist when we were beginning solids, but she was most impressed with his diet as far as variety and quantities go, as well as his growth patterns, so we will only go back if a need appears.  If children were born with a heart defect, obviously they would need to be followed by a cardiologist.

There can be huge differences in children with DS and their muscle tone issues- and this is what sets them apart from their "typical" peers.  Some can have trouble swallowing, some can have more trouble with their trunk, legs, and hips, some can have more trouble with their arms.  Most all children with DS have speech and language delays.  A few months ago I wrote an entire post on our family blog dedicated to muscle tone- what it is and how it affects children with DS, found HERE.

Evan does have some issues in the feeding department regarding swallowing liquids as well as chewing solid foods.  I had someone ask a feeding question on our family blog and wrote a quite extensive response- you can check it out HERE.  Feeding is really the only area I'd say Evan requires *extra* care.  And really, it's no big deal.  We add thickener to his drinks, and we cut his food smaller.  He receives feeding therapy once a  month and we are given little exercises to work on improving his jaw strength.



With speech- Evan only has a couple verbal words right now, but he has at least 20 signs.  Above is a little video of him demonstrating just a few- the attention span only lasts so long when a camera is involved. ;) I keep telling myself I need to write them all down, because I can never remember them all when his therapists ask!  I guesstimated about 15-20, but when the speech therapist asked which ones, I easily rattled off 15 knowing there were a lot more.  We own just about the entire Signing Time and Baby Signing Time series which is absolutely FANTASTIC.  These videos have taught our entire family- I was quite worried how I would do trying to learn another language, but these videos make it SO easy.  And they are absolutely adorable- all three of the kids love them.  Evan's speech therapist visits the house with his occupation therapist three times a month- once a month for feeding as stated above, and two more times for speech and fine motor skills.

Evan has NO problem climbing on top of the play table to get a better view of Baby Signing Time!

Another strength for Evan in addition to signing- gross motor.  The boy can climb ANYTHING, and is super duper fast at crawling and cruising furniture.  Seriously, blink your eyes and he is across the room.  We are working on walking- he is now taking steps while holding hands, but lacks the confidence to take steps on his own.  His physical therapist and I believe it is truly a confidence issue, period.  He has the strength and coordination, he just needs the guts to try it on his own.  His arm strength is crazy- if you clicked the muscle tone post above you saw him doing his pull ups on the baby gate.  He has also taken to doing this on the entertainment center, using the shelves and knobs as a rock wall!  I haven't caught him with the camera yet on that one.  Evan's physical therapist visits twice a month.

Social/emotional- he has been pretty much on track according to his general educator who comes once a month.  Intellectually he's right up there too.  Kids with DS are often misjudged as not being very smart simply because their speech is a little slow or slurred.  This is a muscle tone issue and not an intelligence issue.  They also can understand much more than they may be able to express verbally.



So I have rattled off a bunch of therapies- Evan receives 1-2 therapies a week: Every other Monday is physical therapy (45 mins each), 3 Wednesdays a month is OT and speech/feeding (feeding is an hour; fine motor/speech sessions are 30 mins), and the first Friday of the month is when the general educator comes to play for 45 minutes.

As Evan grows older, I'm sure the gaps may grow more, but you really can't compare kids today with adults you may have seen with DS.  The adults with DS today didn't have half the opportunities our children have now with therapies and education plans tailored to their specific needs.  Students with DS today are graduating high school, attending community college, and even living on campus to participate in college programs.  The future is SO bright, and I know the opportunities will be growing and growing by the time Evan is ready to graduate high school.

So now that I've rambled a bit- I will tell you that Evan has been my easiest baby of my three children.  He was by far the best sleeper and still is, he has the most easy going temperament and will go with the flow of most anything.  I hate to be stereotypical, but he truly is a happy child.  He is full of smiles, but also can have a temper when he doesn't get his way.  He's a busy busy bee, and keeps me on my toes at all times!!  Above all else, he is an extreme joy.  I have truly enjoyed the slower pace a baby with DS brings- milestones come a little later so you get to enjoy each step a little longer.  The baby gear gets used a little longer before it has to be sold at the next yard sale.  I can't say clothes last longer since Evan has been a fast grower, but oftentimes children with DS are smaller and stay in clothes a little longer.  He is more alike than different compared to his siblings and "typical" peers.  He has his own personality, and shares common traits with his brother as well as his sister.  He is a mama's boy and loves snuggles- he will come over and nestle right into my neck for a brief moment between playing, and it melts me every time.  He loves reading books together as well as singing songs.  So, caring for him looks a lot like caring for any other child at his level.  Our weeks are a little busier with therapists coming to the house, but overall it has been just like raising my other two children.

I'll leave you with the trailer of an ADORABLE video titled Deedah- a documentary of a brother and sister, the brother having DS.  I just purchased this at our Buddy Walk a few weeks ago and we all LOVED it.  Justin has watched it several times- he can't get enough! :)  You will see that Jonathan in the video is much like his peers.

I hope I have answered both questions (you may have read more than you were prepared for!).  If you have any other questions please please do ask them!  I would be more than happy to clarify in any area or answer a totally different question.  Thanks so much for asking!! :)