Friday, September 17, 2010

Time to.....

We have alot planned for the next few months. When we first got diagnosis, I was overwhelmed with information. Normally I don't mind this - I like to be informed of my options and choices. But in this case, it was too much at once. The grief of diagnosis was still a bit too fresh, and my head was a muddle. But step by step, with the help of a great EI worker, I have been able to tick off various things.

I have organised our Fachsia funding; submitted all our paperwork to centrelink; arranged for a health care card for my son; ordered and received our PECS folder; purchased a laminator and made photos for our own PECS; obtained a safety harness (AKA Mr. Monkey); organised a disability parking permit; and organised childcare, among other things.

Now it's time to move onto some other things.

Time to move to a big bed.
I need to organise safety gates for the house. Little man is 3 now, and he is a big boy for 3 years old. It's time to move to a bed. Besides, we need the cot for the baby miss, because hers is getting a little too worn for use. I need a safety gate for his bedroom at night, so that if he wakes up, he does not roam the house. I need two others to block off access to the front door. Sometimes, visitors have inadvertantly left the front door open and little man has run out into the street. This has left me in a cold sweat every time it happens. Fortunately, we have been able to catch him very quickly, and our street is a very quiet court location.

Time to toilet train.
As I have learned more about ASD, I came to accept that my son may not be toilet trained until the age of 5 or even 6. This depressed me alot. New research has now shown (so I am told) that even children with special needs should begin toilet training early.... no later than 2 years old! Whoa!! Way past time here then! I had always planned to toilet train him when I thought he was ready, even though I thought he may not 'get it' till he was much older. I feel he is ready now, despite the fact that he cannot tell me if/when he needs to go, and cannot dress/undress himself. We can work something out with regards to communication, and the latter has nothing to do with learning to use the toilet as far as I'm concerned. This new research just confirms my decision, and it's a very welcome confirmation.

Time to get rid of the dummy.
For goodness sakes, he is three years old now. I must admit, I am one of those people who can't stand seeing a big kid with a dummy in their mouth. After having one like my son, I will never judge though. You just never know a person's story. We still have the dummy mostly because I was waiting to see that level of understanding that meant I could involve him in the process. I still do not see it. The dummy, for my son, is a major source of comfort for him. He sleeps and naps with it, but I insist he hand it over at wake times, so he doesn't have it then. Occasionally though, it does help to settle him when we are out and about, and in need of something to calm him down in the middle of a melt-down. To be honest, I am a little loathe to cut off this option for myself. But having said that, the times we do use it for that purpose are relatively few. I will just have to find something else.

I also want to get rid of it for orthodontal reasons. I am seeing buckteeth already forming, and honestly can't imagine trying to get my boy into braces when he's older. I can't even brush his teeth now because he simply will not allow anyone to poke around in his mouth.

Potential problems for speech are another reason - definately not the least of them though. In any case, the dummy must go.

Time to look into some repite.
I am tired. I am drained. I need some help or I am going to go crazy. I think this gets harder as the boy gets older, because the lack of his development of independance keeps me limited in so many ways. As with any baby, there are certain limits in time and mobility in the first year or two. You come to accept this to a degree when the baby is small. But as they get older, your patience wears thin, you get to the end of your tether and have given just about all you have got. Fortunately most children will be developing normally and you will begin to be able to get out more and do more 'stuff'. Not so with my boy. In fact, the opposite is true. It is getting alot more difficult to get out with him. I feel as though I will never get my life back. I feel as though I am losing my sense of who I am. A downward spiral has begun, and I have noticed it.

There is so much guilt associated with asking for respite. Maybe I am just being selfish. Maybe I am just weak or dumb. In any case, I must be a failure. I know in my mind that this is not true, but it's how I feel, and feelings are pretty much impossible to change. Any mother would give her life for her children. But when it comes to the point where she has nothing left to give, well........
I swallow my pride. I need respite.

One last little note: I feel so grateful for the resources and help we have in this country. We are so lucky.


No comments:

Post a Comment