Wednesday, January 27, 2010

Forks and Spoons

So for months now I have been trying to teach Myles to eat with a fork or spoon. Some days are better than others, some foods easier of coarse. He can get mashed potatoes on the spoon and in his mouth at least 1/2 the time. We're still trying to come up with some sort of workable plan for potty training. I don't really want to do diapers for years and from what I have read and been told that happens a lot with children who are severely visually impaired. We're trying to figure out a way to incorporate lights and sound but I am still at a loss as far as actually making a plan.

Myles won't wear his glasses at all now so I don't know if that means they are no longer helping or if it is just a two year old thing. He keeps breaking them and I can't even keep them on long enough to read a book to him. So his vision may be declining. His nystagmus is worse lately and I am having to remind him more and more to use his eyes too, not just his hands. When he does actually look at something he puts it very close to his eyes and says "hmmm"or"ohhhh" so , he still sees something.

We are working on Braille readiness. So we are trying to learn top, bottom, and sides, and to run his hand from left to right across the page. He loves the feel of paper, thank goodness. My son and daughter both have sensory issues with paper and I was worried that he would too. We have been encouraging him to touch it and play with it since he was 8 months old so maybe that has paid off. He still hates the feel of sand, rice, coffee grounds and grits. So I am temporarily out of ideas for the sand table play. We are supposed to hide things in one of these boxes of sand, rice, grits or coffee grounds and let him "discover them". He just refuses to put his hands in it. He will stick in one finger then pull it out and wipe it on his shirt repeatedly. As with most two year olds the things I want him to touch and play with he won't and the things I don't want him to touch and play with he goes back to constantly. The joys of the terrible twos!


  1. Hi Karen, I decided to follow your grandson's blog and keep in touch more. Your grandson is so precious and inspirational. You've also inspired me to create a personal blog of my own concerning my Mother. Not sure when I'll get it up and running, but I feel I the need for another outlet, and a lot more support than I'm getting and I hope to connect with people who may have similar issues. I've made some great blog friends though IF, so maybe I can gain some for this. Is there a support network for CVI anywhere near you? You are all in my prayers and I'm pulling for you! On another note, for the sand table, can you substitute something like a bunch of cotton balls or ripped up TP, and then move on to some coarser materials? Just a thought. Dear friends of ours have a son just six months younger than David(15 1/2) who has lots of issues: severe developmental delay, a condition similar to autism but they don't have a name for it, asthma, food and evironmental allergies, epilepsy, low muscle tone, hypoglycemia, and some kind of heart condition that isn't quite diagnosed yet. I think I covered everything. My friend finally got him completely potty trained at age ten. I bet Myles will make it long before that! Hang in there...

  2. Sorry I got the name of the condition wrong - lca

  3. Bless you Susan, you are such a sweet angel and I appreciate your support so much! I am going to try the cotton ball thing, I think that is a great idea! We go to CVI, which is the Center for the Visually Impaired and he has a great teacher there who is also visually impaired. We also have therapists who come to the house. If I can ever get him on SSI we can have more support but we've been turned down several times now. It is such a rare disorder there are no local support groups and the only person at CVI who has Leber's is an adult. Thanks for following this blog also. It means a lot to me.