Thursday, October 27, 2016

Surprises and Challenges

October is Down Syndrome Awareness month and I have asked my friends to ask any questions they may have about Down syndrome and I am attempting to answer them all.  I have been asked what surprised me the most and the biggest challenge is raising a child with Down syndrome.
The biggest surprise is the number of appointments that are involved in raising this little fellow.  He currently has 11 appointments a month for therapy (speech, occupational, physical, developmental and the coordinator).  They are all helpful and needed.  This does not include medical appointments.  I recently filled out an application for Asher's preschool.  I needed to list his physicians.  There were 5 blanks.  He has 6 physicians.  He is relatively healthy, he has a few minor medical problems, but somehow has 6 physicians.  All this is surprising and challenging.  It makes me very thankful that I am able to work part-time because I am not sure how I could manage all this and work full-time.
The other thing that surprises me is how people with Down syndrome are so often underestimated.  I did this myself prior to meeting Asher.  People with Down syndrome have achieved great things.  
Hands down, the biggest challenge is seeing a friend lose a child with Down syndrome.  The community is small and close.  You are instantly bonded with someone when you have Down syndrome in common.  When a family in your community loses their child, it is heart wrenching.  I cannot imagine how hard it is for them.  This has happened in my local community twice in the past 6 months.  There is nothing I can say that can make things better.  I can only pray for them when I think of them, which is often.
In loving memory of Baby L and Baby J.

Saturday, May 14, 2016

The Unspoken Oh

     It happened.  The unspoken "oh."  The reason why I have been so open about Asher having Down syndrome even before he was born was so that everyone would "know" in hopes to lessen some of the awkward moments.  I also try to share what I have learned about Down syndrome to hopefully educate others through social media.
     Recently I ran into someone who I am not friends with on Facebook and whom I have not seen in a while.  I was pushing Asher in his stroller and he looked at it inquisitively.  I said, "did you know we had another baby?"  "No," was his response.  If he didn't know that we had a baby, then he didn't know we had a son and that our son had Down syndrome.  So I turned the stroller around and introduced him to my sweet Asher.  Then there was the unspoken "oh."
     The "oh" can mean many things and I can't always interpret it.  It can mean, "oh, he is so sweet".  Usually that "oh" is accompanied with oohs and ahhs and lots of baby talk.  This is my favorite kind of "oh," because, after all, he is adorable.  Sometimes the "oh" can mean pity, like "oh, I am sorry."  Most of the time it probably means "oh, I don't know what to say."  I am not sure which "oh" this was and I thought about saying something about him having Down syndrome, but thought that I shouldn't have to "explain" my son.  I instead said nothing at all.  If I could do it over again, I would say something like this:
      We found out that Asher had Down syndrome before he was born.  Initially we were shocked and upset.  Now that he is here we are really doing ok.  We are actually doing better than ok.  He is a true blessing and brings joy to our lives.   Sure, there are times where I wish things weren't so hard for him.  For example, he has to work for every milestone (like sitting and rolling over) while typical children do these things with ease.
     I probably would have stopped there, but I could go on.  Asher has shown me that sometimes difficulties can become blessings.  I've always known this, theoretically, and James chapter 1 tells us this, but it is one of those things that is easy to say, but difficult to live.
     When Asher was a few months old, he was diagnosed with hypothyroidism and was prescribed medication.  Not a big deal.  Except that he had to take the medicine by spoon.  Remarkably, we managed to get him to take it from the spoon.  He has also had some problems swallowing because of his low muscle tone.  Early on he had to have his milk thickened and he saw a speech therapist who specializes in feeding because of his difficulties.  We had to hold him a certain way, give him a specific type of bottle, and thicken the milk, and most of this was learned by trial and error with her guidance.  She led us through all of this, and eventually he outgrew the swallowing problems and we were able to stop thickening his milk.  We continued to see the speech therapist and she was there guiding me as I gave him his first bite of food, on a spoon, that he already knew how to use because he had been taking medication daily for a while.  She also instructed me along the way on advancing his diet, showing me things to do to help him chew his food properly, etc.  Who knew eating could be so difficult?  Now, he is actually eating pretty well.  Because he had the problems early on, we had the speech therapist early on and because he has a thyroid problem, he used a spoon way earlier than he needed to for eating.  Both of these things have helped us avoid bigger problems like food aversions, gagging, and even refusal to eat that are commonly seen in children with Down syndrome.
So what is next on the agenda?  Eating his first piece of birthday cake!
"Give thanks in all circumstances..." 1 Thesalonians 5:18