Show n tell

Thomas has been making some good progress at school.  The teachers and I have a notebook that we pass back and forth to each other weekly, so I can get more details about how he is doing at school and I can give them feedback too.  This helps eliminate me needing to track them down at school and bother them.  It has been working out nicely. 

He had show n tell this week and did a great job.  He had to bring something in from mom and dad’s work and talk about it.  I prepared him ahead of time and we practiced what he would say.  The teacher told me he eagerly sat in the “talking chair” (of all names!) and smiled for a picture, which never happens at school!  Also after his show n tell turn, he stood with the class in the circle, which he has never done before.   He has made so much progress this month!

Racing to wave and say hi/bye

After our last consult with Dr. E., Thomas has been doing amazing.  In the past two weeks he has really made a lot of progress!  We are playing a game that involves racing to wave hi/bye.  We haven’t done the race with any buddies yet, but he is loving racing mommy and daddy to wave.  He is waving in all kinds of situations he never did.  He is very focused on beating us by waving first and therefore isn’t thinking too much about being anxious!  I don't think this would have worked a few weeks ago, but it was the perfect time to introduce it!  Every day before we go into school, I’ll say I bet I can wave to Ms. Nancy  (the director of his preschool) before you and he always says no I’m going to first.  He had only waved to the director, who greets us every day as we come in, one other time and he was always anxious about it, but since starting the game he does it every time!   

After about a week of waving confidently I started asking if he wanted to say hi to her after waving and he did.  Now he says hi almost every time.  Saying hi is one of the hardest things for children with SM to do, so we are so proud of him!  He will sometimes even answer a common question she asks if I give him a choice.  Rock Star!

Highs and lows as a mom of a child with SM

Being a parent of a child with SM can be extremely isolating.  It is impossible for people to truly understand what you are going through.  It is heart wrenching, stressful and frustrating all at the same time.  Children with SM do not have any physical traits that scream "Hi, I have a disability."  While I am extremely grateful that this is not the case, it also makes it very difficult for people to even understand what your child or you are dealing with on a daily basis.  It is not a disorder that is well known like autism or that there are continuous fundraisers or celebrity endorsements for.  The amount of times I hear "Oh he's just shy"  or "He'll grow out of it." is too many to count.  My family is thankfully so supportive and understanding, but my in-laws still question me about his therapy and why it is necessary.  I cannot tell you how frustrating it is to have people in your own family doubt what you are doing to try to help your own child.  They are convinced he'll be fine and that he is just shy.  It makes me want to scream.  Unless you live it, you just don't get it!

Anyways as a mom of a child with SM, there are incredible highs and incredible lows.  There is nothing better than helping your child break through a barrier of fear.  When Thomas started waving and speaking in stores, it was incredible and such a huge high.  If you are a parent of someone with SM, you know though that you will fall from that high eventually and probably sooner than later.  Just when you think your child is doing so well, there are the inevitable set backs which unavoidably just feel like a punch in the gut. 

Today was one of those days.

I took Thomas's folder out of his backpack after school today like always.  They usually have a craft in there or something informational for the parents to read or sign.  Today I pulled out a cute pink valentine card that Thomas had decorated.  Inside it said "I love you to pieces."  It was very sweet, but like most preschool presents I receive, they always put a picture of your little preschooler on the front for you to remember how happy and cute they were at this age.  Well, on the front of my son's sweet v-day card is a picture of him looking completely emotionless and miserable.  I tried to hold back tears as my son presented me this card he was so proud of.  It looked like all his preschool pictures from last year before we got treatment.  We've made a lot of progress this year, but this picture is just a loud, obnoxious reminder of how far we have to go. 

I'll hang it on the fridge for a few days to show him how much I love his craft, but then it will be put away, not to be looked at for a long time.  Sad, but true.