Oh here I am making my "to do" list for today. DDD calls, equipment company, therapy appointments, bills, thank you notes, etc., and oh yes, register Maxwell as "deaf/blind" with the NSDS.
I had to stop and chuckle. Registering my precious child as "deaf/blind" is certainly nothing I ever thought would be on my to do list. Yikes. Writing it on my list made me pause, but not cry. It simply is part of our life...and that is ok.
Perhaps it made me smile because of the absurdity of having it on a "list" as though it is a customary thing to do for a child. Or perhaps I smiled thinking of the strength we have mustered in the past few years. This would have crushed me in the beginning of our journey, but now my first thought is how will this "label" help him with future services.
Oh this journey certainly has been interesting...what is next Maxwell, what is next?
NOTE: As of right now, Maxwell actually has fairly good vision for his age. However, he is at high risk for having vision issues because of the various challenges he has from CHARGE syndrome. According to the consultant (we had a deaf/blind consultant come to our house for an evaluation), it is difficult to assess his true vision until he gets older (school age) and needs to read and write. At that time, his vestibular dysfunction and cranialfacial issues may or may not dramatically impact his use of vision. We learned about this issue at the conference this summer and it was certainly an eye-opening (no pun intended) lesson.
5 comments:
r great and ;u know i think it
Wow, I wonder if we need to do the same for Reu right now. Is it too early? 2yrs on and you're definitely ahead of the acceptance on D/B. We've been delighted with Reu's vision despite the coloboma but missed that seminar on later high risk loss.
Max, I was found eligible for the deaf/blind program this year. My hearing in the one ear is at the 90 decibel level and 60 decibel in the other ear. My vision is labeled as delayed visual maturation and although it is greatly improving, the deaf/blind program gave us eligibility to their resources. -your friend Tommy
My son was born 3mos early and suffered from the not uncommon ROP. He's had laser surgery on both eyes and has worn glasses since he was 18 mos old(he's now 10). The level of programs to help vision over the years has really progressed and I am pleased that he may end up having somewhat semi decent vision in his left eye (it's not so great these days).
I know our situations are really different, but if you have any eye questions down the road, please feel free to contact me. I feel like I should be awarded the "Junior Ophthalmologist" award.
WOW!!! It has been a while since we visited his page. He is huge and so so cute.
All our love,
Shawn, Tricia & Kyle clary
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