One step forward, two steps back

As a parent to a child with SM, there are a lot of emotional highs and lows and the journey always seems to be one step forward, two steps back.  There are days when everything seems to be going great and progress is being made, but while you are riding that wave of success something inevitably will knock you down and it doesn't take too long.  Today was one of those days.

I had given the teachers a notebook to write in after each school day to let me know if Thomas did particularly well in one area or any struggles he had that day.  His doctor recommended this and although I know it's annoying for the teachers, it will be very useful to know what we need to work on.  I feel like it will give me a better sense of what is going on in the classroom, as I really don’t know much.  Thomas talks about school, but he's not going to say "Yes, mom I initiated conversation today" or "I am doing great at interacting with the other children." So after about a week or so, I collect the notebook to read and then return it. 

I got it back today and was excited and nervous to read it.  This is what I got from it so far:  Thomas
is talking a little bit in class and participates in a lot, but the teacher said that children are starting to ask why he doesn’t talk.  I am happy with how they dealt with this, but it is so sad that they don’t know the real Thomas.  They also said he stands under the slide when doing some outside activities and refuses to participate in a lot of activities that involve movement.  This just kills me.  I can just picture him standing under the slide all alone wanting to participate but paralyzed with fear.  Thomas loves to be silly and is constantly on the move.  I know he wants to join in, but he just can't.  It makes me sick.  All I want to do is to get him through this.  Children should not have to be paralyzed by this type of anxiety at such a young age.  That is why I am so dedicated to his therapies, because I am determined to make sure that he does not live like this forever.

We start OT next Thursday on a regular basis, so I am very interested to see what they have to say about his sensory defensiveness.  Although we may get knocked down, we'll continue to get up and try again and again and again.