So you may have seen me share the below video of Maddie girl using the switch pad earlier in the week (sorry not sorry I keep posting about it!), but she illustrated some awesome new brain connections to us in her therapy session last week! She’s still been teething and quite frankly, pretty moody, so when we went to speech on Monday I wasn’t sure how the session would go. She wasn’t too interested in eating, but because her therapist is awesome, she suggested we work on vision since Madison was awake.
Madison has CVI, which is a brain based visual impairment. You can learn more about that here. Essentially, her eyes are physically okay, but her brain has trouble making sense of what her eyes are seeing. She still doesn’t make eye contact, or track items, but she does respond to lights and sound. Her therapist brought in a light aide, which looked something like a Lite Brite, that was connecting to a switch adaptor. I’ve read a ton about switch adapted toys, and recently talked with Madison’s occupational therapist about getting some, but this was the first time Madison actually played with one.
A switch adapted toy is a toy in which the original switch is redirected to a larger switch that makes it easier for children to interact with. Because a lot of kids with special needs have limited fine and gross motor skills, it can take a lot of effort for them to play with a regular battery operated toy. By adapting the switches, children can interact much more easily and begin to learn the cause and effect associated with playing.
Madison does grab at toys at home, but in all honesty there are many times that I’m unsure whether she is grabbing with intent or not. But, in seeing her play with the switch adapted toy it became clear that she was indeed making the connection from brain to arm to hand to eyes! We started by simply showing her some of the various light programs loaded into the light aide just to see if she would track, which she did! Her eyes followed the various lights as the colors changed and the lights bounced around on the screen. Just watching her track the lights was a win in itself!
Next, her therapist brought out the switch and placed it in front of Madison’s hands. Madison started with her hand in a fist, but gently pressed down on the switch and saw the lights change. The more she interacted the more it became clear that she did indeed understand she was in control of the lights! Her fist soon opened to a flat hand, and eventually she started pressing just her pointer finger down on the switch. She even started tapping her left hand on the table, and wound up moving her hand midline and eventually onto the switch pad with her right!
For the first time I got to watch my daughter interact and play with a toy on her own and with intent. Not only were her eyes tracking the lights and their movements, but her brain and arm were working together too! She did occasionally have to take some breaks, but that is common for kids with CVI. What seems like something so simple is actually a lot for their little brains to take in. Resting her eyes and mind throughout the session helps her brain to really take it all in and hopefully keep those connections formed for future use. I know one things for sure, we’ll definitely be incorporating lights and vision work into her speech sessions going forward!
Madison also saw the eye doctor last week, as she does every few months. Unfortunately one of the seizure medications she is on can compromise peripheral vision, so we get her eyes checked every few months to ensure there is no damage being done. I’m happy to report her eyes still look fine. She has pale optic nerves which imply some damage was done from the meningitis, but no further damage has ever taken place. Although she has trouble tracking items, her eyes do track together and she does not suffer from nystagmus or any drifting.
Because we are now seeing Madison become more alert and able to use the vision she does have to a better degree, her therapists and I all agreed it is time to get her registered with the Commission for the Blind in order to get her some actual vision services. It’s a weird feeling to get excited about registering your child with an organization like that. To label your child as “blind” when their eyes are physically okay. But that’s where we are. I know Madison can see something, and I want her to have the best chance possible at strengthening that vision. By registering her with the Commission for the Blind, she can receive vision services to help us improve her eye sight to the best of our ability. They will provide all the toys she needs to work on vision, and could perhaps help us in getting a light aide of our own.
Madison’s eye doctor agreed that now is a great time to get her registered because she feels her eyes are stable and capable of improvement, especially as we see her seizures become less and her alertness increase. This week I’ll be submitting her paperwork and hopefully we can get the ball rolling on starting services soon!
I truly hope this is Madison’s year! Even through the teething hell we’ve been going through, she showed some real promise by interacting with the switch adaptive toys. We’ve got another busy week ahead of us so here’s hoping that drive in her continues! We were lent some adaptive equipment that her therapist and I are going to try and set up for her tomorrow, and her neurologist helped me make some moves in the right direction in getting the medical marijuana process started too, so more updates to come on that!