Say it again... and again...

I kept Myles most of the time this past week. There was a lot going on and it was just better for him to stay here. My husband was out of town and so it was just me and the boys. Cyan is 14 and pretty much hibernates in his room most of the time and we didn't  have school this week due to winter break. It was a hard week and I was exhausted and ready for a break, but I have to say that after the first couple of days he wasn't screaming as often and seemed to be much better behaved. I really think that he just needs more consistency and an intensely structured routine in order to get his behavior under control. The problem is that he is going in so many different directions it is almost impossible to keep things consistent.  He is spending the weekend with his dad and so I am sure that Monday will be a "start again" day. Daddy loves him, but it is very much a lets just play and have fun situation when he is with him. Maybe this weekend will be different. Mom and dad are tired of me stressing structure and schedule so they just tune me out now for the most part. I get the "I know, I know, keep him on his schedule"  whenever I try to remind them. There is also the "keep him on his diet and don't forget his vitamins" reminder. I feel like a Drill Sargent sometimes or maybe a broken record is a better reference. And then of course there is me telling Myles over and over again throughout the day, "please don't poke your eyes" and "please use your inside voice" or "please don't scream Myles". Now he has begun to put his fingers in his own ears before he screams. At least there wrong with his intelligence. He also learned several new phrases this week, he had now added to his repertoire, "go night-night" and "good job".  But his favorite repetitive phrase is still "go outside, go bye-bye" he says it 20 or more times a day, over and over and over. So, I guess we are both broken records. LOL! Maybe it will warm up soon and we can spend more time outside and he can scream to his hearts content or till his voice gives out, whichever comes first.

Arggggghhhh!!!!!!! The Screaming.......the poking!!!!!! !

I may loose my mind. My grandson screams. He pokes his eyes incessantly and he ignores all my attempts to correct these behaviors. We go through phases. I get him to stop poking for a little while. Later, I get him to stop screaming for a little while. Then something will happen with his schedule or maybe nothing happens and he will start it all again. He has been screaming all day, every day, all week. We went to CVI on Tuesday and he screamed almost all the way there and then again almost all the way back, that's two hours of nearly non stop, ear piercing, high pitched screaming . He also throws things, hits, pinches and just generally behaves in a way I can only describe as "Helen Kellerish" It reminds me of the Helen Keller, pre-teacher that I read about when I was a child. It made an impression I guess and when he behaves this way I start gritting my teeth and trying every way I know to make him stop and get him under control. It usually goes better than it is currently going. My nerves are shot. My head hurts constantly. I have no patience.
During his non-screaming phases he only screams in unfamiliar situations like restaurants, stores, malls, anywhere there are people of course. When you look at Myles you can't immediately tell that there is anything wrong with him and people think, well I don't know what people think but they get angry. They are rude, they make comments, they tell us to control him. So, needless to say I don't take him out a lot. It is just too stressful. I have a lot of experience with kids. I have raised two kids and nearly a third. I have had a foster child. I ran a daycare/preschool with 60 kids, I worked in the school system for years, I worked in an alternative school for years, etc., etc., I love kids of all ages and I normally have an abundance of patience. But I can't control the screaming. He will not respond. I try to be very consistent. I try to be very calm. He will not stop. It is soooooo frustrating I am really pulling my hair out.
We worked very hard on it and he had stopped doing it at home and in the car for the most part for quite a while but since Christmas he has gotten increasingly worse. I really do know why. My daughter and her husband are getting a divorce. His whole little world has been disrupted and he is out of sorts. I just wish that I could get him to a point of feeling more secure so that he would stop because it is so hard to deal with. I can't go anywhere. If I try to talk on the phone the other person says "oh dear, I guess I'll talk to you later ", I don't blame them of course. If I could hang up on it I would too. On top of this he is poking his eyes until they are bruised. This stresses me out because it can cause damage to his eyes. Nothing I say or do will make him stop. Sometimes I just have to hold him and hold his hands down for extended periods of time until I can get him to focus on something else. So what is the point of this post you ask? I don't know really. Just a release of frustration I guess. If you have any ideas of course I am all ears. At least until I go deaf or insane.

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!

Update

We heard from the doctor from Emory yesterday. Unfortunately Myles does not qualify for the Gene Therapy that we had been hoping for. They said that the reason the testing is taking so long is because the mutation he has is more rare than we had imagined. Apparently they don't know much about this one and we will have to wait until they are able to complete a full breakdown of his genetic profile to find out what the other effects of the mutations will be. So it is news and no news at the same time. More waiting, more wondering, more confusion and the only new information really is that he does not qualify for the surgery that might have helped him to see. And so we keep waiting...
...and praying, and doing what we can through diet and therapy.

Still waiting

We are still waiting for genetic testing to come back. I has been about 9 months, I think. Myles has not been doing great on his diet over the holidays. Well that's what New Year's Resolutions are for!

Myles

Myles in November

(diet week 6)

In his silly glasses, but wearing them, yeah!

This is how close he has to hold something to "see" it. It also usually has to be shiny, have a light or brightly colored for him to try to see it at all.

(before diet)

A Nutritionist

So, my daughter has a nutritionist looking at the diet we have Myles on to make sure we are doing the best we can for him. I really think the higher dose of Vitamin A was making more of a difference and can't seem to get enough food based beta-carotene in him to make up for lowering the dosage. We go back to CVI tomorrow and will see how he does there, that should give me a better idea of how much of a difference there is in the lower dosage. It just seems as though he is not using his eyes as much this week. It's still better than before the diet, just not as good as when he was on a higher dose. We also added ExFuze seven today. My daughter has been taking it and thinks it will help so we will see.