This season has been a hard one for us. Harrison has been stable and thriving but we’ve been down a night nurse and dealing with inconsistent schedules which makes it challenging to plan around. On the flip side, we have some amazing nurses that truly care for him and go the extra mile consistently. He started 1st grade earlier in late September and has 2 amazing nurses who go with him on the bus to school every day. One of them is part time and the other full time and they are so great advocating for him in the classroom and being the support he needs. He has truly thrived since starting at school and genuinely looks forward to going every day.
One of the huge advancements he’s made has been with his eye gaze computer system called a Tobii Dynavox. He spent the previous year doing school from the house…the district would send a tutor and his therapists to the house a few days a week and that really helped lay the groundwork for him using his computer this year. We think that the differentiator was the last round of stem cells though…he just seemed to have this huge growth in understanding and abilities with language that are hard to explain.
He had been using his computer to play games occasionally but it was really hard to know when he was done and zoning out vs. actively engaged with the screen/game. The use of language was minimal and there was no consistency from what we could observe. Flash forward to now and he’s starting to use the screen to ask about upset classmates (emotional empathy!), to say his name to the classroom excitedly, and to even articulate his preferences – his favorite color is yellow! For us, this has been a HUGE form of validation that we knew what we knew and also has given us additional insight into his personality. Having a child like Harrison makes it impossibly hard to truly know their desires but this technology is giving us the ability to see more into the amazing kid that is Harrison.
Some of my favorite interactions that he’s done while at school include:
· A kid shoved another kid and he immediately said “stop” and then when I said yes he needs to stop you don’t like shoving he said “stop want like”
· Trying to watch a movie and kids weren’t into it so Harrison said “here this here loud” later also said “quiet quiet” many times
· Said “ice cream” when watching frosty the snowman
· Said “surprised” when the video story at circle had a loud noise and words
· Said “happy” when wearing the glasses and spinning around with me
· said “king” which is his friend in his class name then looked at King (had to go find it in the card section of the talker!)
It’s hard to say for certain if the stem cells are the cause for this jump in ability but we’re confident that it hasn’t hurt anything. Every time we do a treatment, we see new strength, expanded abilities, and increased personality. It’s been amazing. We’ve been collecting donations and storing them in the garage until the spring time when we can do another wave of sales. We’re hopeful to raise enough again to do it 3 years in a row.
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