autism, children, health

The perfect post

All week I’ve been wanting to post in here, and I never have the time.  I keep composing posts in my head when I’m away from the computer, but once I sit down I never get to it.  Hopefully one day the two will synchronize…

My dream is for this to be a profound journal about our thoughts and experiences with autism and deafness, and also my life journal, and an interesting photo blog, and a sharing and teaching area where we can both learn from others and have them learn from us.  I know this is not a goal that one can loftily achieve immediately – especially when one is typing with a 4 1/2 year old child on their back climbing on them in the chair —

yee haw..

Ahh he settled back down.

no – he’s not.

A few minutes later – we’ve looked at some Flickr pics again we took and now I’m going to try and write more.

Colleen has strep and is home with me.  She has been drawing awesome pictures like this –

and this

and I’m so excited to finally know how to post pictures from Qumana like this.  [Before I had to do directly from flickr in groups, which is okay, but variety is the spice of life!]  I will do both I’m sure as each has its unique purpose.

(2020– obviously those pictures are not showing – I will go back in at some point and post some of them though of course I won’t know exactly which ones they were….)

She draws the pictures on the computer with her mouse.  I have no idea how she does this….

She just went and dressed Ryan for me.  She is very helpful!  After this I need to straighten house and go on with my day but I like to have a little time here now to just relax.

We have had a lot of problems with Chris the last few months or so.  I have been slowly uploading my journal posts from my old journal that talked a lot of the things that happened with Chris in 03/04, etc., and some of the problems are different now but some are just as challenging.  By the time a lot of you get to read this (I imagine by Christmas I’ll have this semi-publicized to a lot of people) all of those journal posts should be on here and you can read how he had done those years up until now.  But the most recent problems are:

  • Using his weight against us – when he wants something, he’ll push us towards it until we give in. 
  • He wants to run into the street now after his walks and tries to take off to the main street to the left of us (we always walk to the right of our house down to the cul-de-sac and back, but now he won’t go in the house upon return, just tries to run off down the other way.  I was still able to stop him a few days ago, but it took all my energy, and I had to come in the house and lay down for an hour.  His aide had to bribe him into the house with a bowl of spaghetti – but that doesn’t always work.  So now, no more walks with him until this behavior stops!
  • When he is doing something now that we feel is incorrect or inappropriate behavior, he will not respond any longer to “sign language” – and after our unsuccessful attempts at stopping him physically from doing certain things [our weight against his] we are at a loss of how to stop him.
  • We are still struggling with his eating patterns, where he will eat and eat and not seem to know he’s full, and then spit food out when he’s done.  He is also getting too heavy.  (5’7″ or so and 192 pounds).

Some things we’re hoping to do to combat this:

  • We have called in an expert and hope to get a grant to pay her, if she’s able to help us, with assigning Chris a behavior plan/icon schedule like he has at school so that he can have a schedule/routine and way to ask us for what he wants besides physical direction.  We had tried in the past to set up such a schedule with no luck.  But at school they have done it fairly successfully.
  • Use above to also direct him on the walks and hopefully keep him from running down the street – but this is a dangerous test…
  • And by getting him on a schedule we also hope this will get Ryan on a schedule too (we plan to do the same thing for him) and get our whole family running more smoothly.

More soon — Ryan is now driving me crazy and I think I typed most of this 2 hours ago but never got to finalize and post…

(Ryan’s addition below)

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