I realized I haven't posted much concerning Jimmo so I thought it was time for a little recap of our FXS road. School has been going very well for him and he's enjoying his new teacher. Six students this year and one teacher and two aides. I can't believe my little man is the "older" preschooler in the classroom. He turns 5 in just a few weeks - YIKES! We've been busy working on our To Do list from the FXS conference in late July.
- We mentioned that we participated in an auction and won a visit with one of the top FXS neurologists (Dr. Berry-Kravis) in the country to come visit with us for a day and see Jimmo at home and school. It's now set for the second week of October and we're really looking forward to this priceless opportunity.
- We purchased a laminator to make the many visual schedules that we have ahead of us. We have multiple strips around the house that have 3 to 4 pictures so he can anticipate what is next to come and eventually what is expected of him. (bathroom steps, getting dressed, leaving for school etc.) The one in the car will probably be the most useful to start. I never imagined in my wildest dreams that I would be so excited for the UPS man to deliver a laminator - seriously?
- And we're also working on coordinating a Northern Virginia mini conference for Fragile X. It looks like it's going to place in February and we have some great speakers on board. I'll share more details once things are more concrete.
As for day to day things for Jimmo, his private speech therapist is getting her hippotherapy certification so we've been doing speech therapy on the horse. Last year we did a 10 week session of Hippotherapy with a PT and he made great strides with his overall gait and balance. This is a unique opportunity for us because it's almost like physical therapy, occupational therapy and speech therapy all in one session. He's very motivated by riding and it's very soothing for him so we're hoping that the riding will take care of his sensory needs and the motivation to ride will help pull some speech out. We continue to trust God's plan for our little guy to talk and faithfully pray for this. Below you can see how many adults it takes for this session to occur - amazing.
We're also looking into a few alternative augmentative communications systems (AAC) to help with his frustration with lack of communication. We're still using PECS, but it's limiting and we think he'll be able to handle this next step. We're looking at an nontraditional route and possibly an IPad. We figured that this could serve many purposes for him and not to mention it's about 70% of the cost of the traditional AAC systems. There are some amazing apps for special needs and a new case for the IPad that makes it look almost indestructible. It will take some training and lots of time, but as much as he likes to play on the computer (Starfall), we think (hope) he'll be thrilled once he figures out it's the way to communicate with us. We're still in the research mode, but this is what we're leaning towards.
We're also looking into a few alternative augmentative communications systems (AAC) to help with his frustration with lack of communication. We're still using PECS, but it's limiting and we think he'll be able to handle this next step. We're looking at an nontraditional route and possibly an IPad. We figured that this could serve many purposes for him and not to mention it's about 70% of the cost of the traditional AAC systems. There are some amazing apps for special needs and a new case for the IPad that makes it look almost indestructible. It will take some training and lots of time, but as much as he likes to play on the computer (Starfall), we think (hope) he'll be thrilled once he figures out it's the way to communicate with us. We're still in the research mode, but this is what we're leaning towards.
Another therapeutic but yet FUN item we purchased this summer for him was the WEE HOO! Say it aloud - it's just fun to say. It's a bike attachment that is low to the ground with a 3 point harness that goes up to 100 pounds - WEE HOO I say! We got it in July and he loves to go for bike rides - it totally defines why they named the bike what they did. Nine times out of ten, it puts him to sleep, but we know from hippotherapy that because of his sensory overload that he fights all the time, if that is relaxed, he just chills. Riding a bike takes a ton of coordination that our little guy probably will never have, so this really fits for our family for now and the next 60 or so pounds. Because Princess catches the bus about an hour before Jimmo starts school, I've been able to ride him to school on his WEE HOO. This smile tells me....Who needs that stinkin bus! Don't mind the mulch bags but it doesn't have a kick stand so we use whatever is closest.
And princess learned to ride a bike this summer (couldn't help it - had to mention her) so this fall we hope to do some family rides.
And princess learned to ride a bike this summer (couldn't help it - had to mention her) so this fall we hope to do some family rides.
I hope to get back and recap August soon. I'll close with this picture....he slept for two hours in the car yesterday on the way back from Nana's in this position - ouch!
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