My life with Autism is Different Now...

I have been spending a lot of time lately (between work-insanity, spending precious moments with my son, well, actually that's about it. No time for anything else) reading the blogs and posts of others who have ADS children. First let me say, my computer
Is down and might never get back up again so everything is being done by my smart phone---God bless smart phones. So I can't set up links to anyone, that and I'm technologically hopeless. But I do want to give shout outs to Autism Daddy, Bacon and Juice Boxes and Autism Mumma. There are more but I have to move on for now.

First let me say that each and every one of you bloggers out there who have children with autism are amazing and insightful people. I truly enjoy reading what you have to say. It helps me look at my situation in a different light, with new insights and understanding. And sometimes you just make me laugh when I need it most. So thank you for being you and sharing your journey with me.

Now on to the post. I realized while reading everyone that I have not posted a lot about my life with autism, at least not lately. My posts have been taken up with everything else going on in my life, none of which are MORE important than my son.

My life with autism is different now than it was 6 months ago, partly due to Spring Harbor, which was a blessing in our lives, but partly due to time. My son is very high functioning, he is delayed in motor skills- fine and gross, he has more sensory issues than you can shake a stick at (always wondered what that meant) and has a lot of aggressive tendencies. Meaning when the going gets tough for Will, the stuffing gets beat out of me, or his teachers. Now SH has helped with the aggressiveness, although its not gone. In fact I've seen an increase since school got out.

What does this mean in my life? Well, like a lot of you, it means a lot of planning. It means that I turn down invitations for things, or invite people over to my messy house instead for a more easily controlled environment. (I find that most people either decline to come or never even respond which can be disheartening, but that's the way the cookie crumbles)

It's all about the schedule, the routine, and the prep at my house. I'm sure most parents can agree those are key factors. I also try to find a balance with pushing Will out of his comfort zone (gently and slowly of course) to help him grow in what he will tolerate, and even enjoy. His dad recently took him to FunTown (local amusement park). I was so proud to hear he went on several rides including the Log Flume- granted that was only ONCE! But he did it and realized it could be fun in a terrifying kind of way.

I am lucky in that my son is able to be pushed sometimes, unlike a lot of ASD kids. The trick is to learn when and how far. When I make a mistake the ramifications can last for hours, days and even on one occasion weeks.

When things are good, my son is the sweetest boy I know. He hugs and kisses me, tells me he loves me and tells me I'm one of the best people he knows. We're having many more good days than bad since SH and for that I am grateful. As I write he is playing with his toys on his own (has always needed an adult to play with in the past, I know quite the twist on the typical ASD kid right?) waiting patiently for me to make him lunch.

So the child I have today is different from last year, and I can't wait to see who he will become in the future.....

The time is fast approaching.

I know I told you about our Christmas vacation, but did I tell you why we spent such a quiet week?

Well, I know I've told you we have been discussing having Will go to Spring Harbor after the new year. Guess what? The new year has come and gone. I have been panicking since Christmas about this day.

I went to a meeting at Spring Harbor on the 11th. Our case manager Jen and I put in the referral that day. 5 days later we were told he was accepted and put on the wait list. Well, we just got the call Friday saying that while we don't have the exact date, it will be the week of the 30th.

I can't convey the feelings going through me any more. I'm hopeful, worried, terrified, and have a hole in my heart that's so large I can't explain it. I feel like I've failed my child. I can't fix this for him!!! That's my job. I'm supposed to fix it for him.

Now, I don't need anyone to tell me it's not true. Intellectually I know this. But whether it's a "mom" thing or just the impossibly high standards I have set for myself, I still feel like a failure.

The panic is setting in as the time draws closer. What do I do when I'm all alone in my house? No one to come home to and cuddle in bed with. I know I can visit him, but they made it quite clear they don't want me to visit too much. I've never been away from Will for more than less than 48 hours. How do I make it for up to 2 months? How do I keep from falling apart when I do see him? When I drop him off?

I guess it helps that when I brought up the subject he got excited and told me he wants to go. Now I don't have to worry about how he'll react when he goes, although I'm pretty sure it won't be what he thinks it will be.

As much as I wish I could wave a magic wand and fix everything for Will, I know it's not within my ability. This is why as painful as it is I decided this is where he needs to be for now.

When your child watches a commercial for St Jude's hospital and tells you he wouldn't mind having cancer because he wants to die anyway, what else can you do but go to the extreme.

But what do I do if they can't help him either? Where will I go then to keep him safe and give him the happy childhood he so deserves. I know, I know. I'm getting ahead of myself. I need to think positively. I need to believe they can help because the alternative is too scary to contemplate.

If anyone is actually read this..... Please pray for my child. He needs everything everyone can give him. He deserves so much more than I have been able to do for him. I want him to want to live. Cause if ANYTHING were to happen to this miracle of mine I'm not sure I'd be strong enough to carry on. So please pray.

I'm trying to stay positive, but it's been hard lately and will only be getting harder for a while. The light at the end of the tunnel is that this will help and put us on track.