• Ian and Kristina Horsted

How was your day?

Today Jackson and his classmates had a special day. Since it was the 50th day of school, the kindergarteners dressed up in 50’s style clothing for a sock hop and root beer floats. Super fun! I can just imagine the parents asking their kids all about it. “How was your day?” will be answered with a steady stream of chatter about the fun activities, the yummy treats, the costumes their friends wore. These kids may also talk about something they did at recess, what they ate for lunch, and something funny their best friend said.

Things are a little different here. I will ask Jackson questions about his day, and somedays I get a full sentence, sometimes it is a phrase repeated, and other times it is one word answers. I also can’t be sure if his answers are accurate - for a while he was always answering “Tacos!” when I asked what he ate for lunch or “Hockey” when we talked about gym class. Like most parents I CRAVE information about his day. I live for those few moments before school and after school when I get to have a few words with a teacher or his EA so they can share progress, behaviors, or even funny little anecdotes that I wouldn’t otherwise hear about. We also do a communication journal so his teachers can jot down a few sentences about the day and I can do the same about his evening or weekend. I try to be as descriptive as I can so they know that he was a dragon for Halloween or that he got to hang out with his best friend at the pumpkin patch. Things he would not offer up to them, but if they knew to ask he would LOVE to talk about them. The teachers are pretty descriptive as well so I know about an activity he enjoyed, a fun gym class (he actually DID play hockey one day!) or other things he would want me to ask about. This is a true gift, and I can’t even express how thankful I am that he has this support.

Jackson has made some great achievements in speech over the years. When he was 2, he began doing speech therapy through the Birth to Three program. His therapist visited us in home and started working with Jackson through play therapy. The goal was to get him to utter at least one word at a time and to build vocabulary. At age 3 he began preschool, and his speech goals changed to 2-3 word phrases. Now that he is in kindergarten, he is able to talk in longer phrases and sentences, and I feel like he is listening and responding better. Sometimes he will say something and Ian and I will just look at each other like “Wow!!” Sometimes I wonder if he feels like he’s trapped inside of himself, trying to communicate more, but just can’t get it all out. I get a few glimpses of this when he says something profound. Like when he looks deep into my eyes and says, “Thank you for taking care of me.”

Jackson is growing and improving daily, which is why I can’t bear to think of the future and the progressive decline that may come later in life as a result of Salla. Typically individuals experience this decline in their 20s and 30s. But we will fight to keep that from happening, we will continue to believe in him and work towards his goals, and we will support the Salla foundation and the researchers who may find answers. We will stay hopeful and positive!

Thanks for reading!

Kristina



Jackson and his best friend are ready for the sock hop!

With special thanks to 
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Salla Treatment And Research Foundation | PO Box 1051 | Riverdale Station | Bronx, NY 10471

©2018 by STAR for Ben