Friday, October 28, 2005

Dear Noah:

So you have had some problems falling asleep lately. I know sleep problems can be issues for autistics so I am hopeful this will not be an ongoing problem. Isn't it this weekend we set the clocks BACK one hour? That SHOULD help as when it used to be 10:30 it will be 9:30 and you should be MORE sleepy. You used to go to bed super early around 7:30 or even 8:00 or 8:30. Over time you moved to 9:00 and then 9:30 p.m. That used to be the cut off. Many times now you want to go to 9:45 p.m. and next thing we know it is actually 10:00 or after. AND then when we go to bed you can't fall asleep. Which means I DON'T GET ANY SLEEP you toss and turn and are lying there wide awake. And none of this seems to affect your body and waking hours. You are wide-eyed and raring to go the next morning. Full speed ahead for you...while I drag my sorry butt around like death warmed over!

SO I am back to making you be finished getting ready for bed by 9:30 p.m. again. IN THE BED time is no later than 9:45 p.m. So far that is working out...and story time is anywhere from 5-15 minutes. Then we go to sleep.

I wish we had a house with a yard or therapy/exercise room. Last night you did some movements on your own which unfortunately consisted of you running from the kitchen and jumping onto the arm of the soft sofa and doing a somersault or body slam onto the seats OR running from the kitchen and jumping on your little stool and then onto the sofa. You did this over and over and over. While I should NOT allow it cause of the sofa wear and tear I also KNOW YOU NEED to do this so I let you. I am glad I did as it did wear you down enough you were actually TIRED when you got done and you actually FELL ASLEEP when the lights were turned out last night. NEW CONCEPT!!

They say a good 15 to 20 minutes of running around and vigorous (and I MEAN VIGOROUS) exercise for autistic kids is great prior to going to bed or anytime you need to get them to sit down and sit still to focus on something. We have found it does work well. Problem is at 9:30 p.m. I can't let you go out and run around in the grass out here because you make a lot of loud sounds. Maybe if we had a house I could...but even then you might be too loud. That is where the exercise room could come in handy. I have a couple of times let you go out in the front yard here with me at night. You become WILD and free like any other kid and run around back and forth and crash into the ground and make your sounds over and over. A bit too loud I guess and repetitive. I can tune that out and not let it get to me but I know it would wear on someone else's nerves.

I am constantly reminding you that not everyone wants to hear you make those sounds and that when we are outside you can run around but you have to be more quiet. Would be great to have a place you could go and be as loud as you needed to be sometimes. That is one reason we love your occupational therapy so much. A safe place where you can be rowdy and loud all at the same time while actually HELPING yourself.

SO we really need to try to finish getting the condo ready to sell and getting a house. Not sure how we will do it as I am losing my full time job at the hospital. PLUS there are 15 or 16 other condos back here for sale. NOTHING seems to be selling quick around here. SO it could take some time. We are still moving stuff to storage to make more room for us here now to be more comfortable while here and that is great. I know God will provide and things will work out as they always have. We just can't see down that road yet to see HOW it will all happen.

Sometimes it would be nice to just be able to BUY what you need and not have to worry about things. I would not have to worry about trying to keep working to pay bills but could focus on you more than I am able to even now. It can all be so exhausting and time consuming and there never seems to be enough hours in the day. I think I would just about have to have a full-time staff of my own for my time to be freed up solely for you. I don't think anyone without an autistic child understands how time consuming your therapies and cares can be. I am not complaining...don't get me wrong. AND I have learned to budget my time pretty well. BUT we are trying to do several full time jobs in 24 hours and that is just impossible! We either need to let some things go and not worry about them as much or get additional help to do those things I guess that we don't have time to do. I am not too worried about that all now.

I cannot believe I have been off work already for almost 3 months. AND even while off on leave of absence it seems we never had enough time. Never had time to do all the things we should be doing and in the best way. We are slowly getting them done though.

So in a way sometimes thinking if we magically had a house of our own that we did not have to worry about paying for.....or a way to pay for our expenses so I could devote all my time to you and your cares and whatever else needed to be done without the worries too of having to get my hours in or lines typed.....would be a relief.

Back in my mind I know God will provide for us as HE always does. I believe this change will be for the best and good things will come to pass because of it.

Meanwhile I need to "keep you engaged" as much as I can. I know sometimes when you become engrossed in something for hours I LET you as I am so tired that actually offers me a break. BUT that is not right and I need to NOT do that at all. I come...ready or not!



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