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Country: USA
Member since: Oct 23, 2007
Last logged in: Dec 01, 2008
Hi everyone
My name is Jan and I am Mom to my wonderful son, 22 year old Andrew who has regressive autism that is fairly classic in it's presentation, (the result of his MMR vaccine at 16 months.) He also has bipolar disorder and tourettes syndrome.
I also have a wonderful (NT) daughter Allie who is 25 and working on hers Masters Degree in Fine Arts.
I work for an Autism agency and spend the rest of my time advocating for my son. I am trying to get the people in power in the adult service world to understand what "Best Practices" are for people with Autism.
I have been married for 26 years to my DH who is a sweetie and very content to let me do the "autism stuff."
Andrew has just transitioned from school to adult services, a very disheartening event! Adult Services knowledge about people with Autism and their needs is generally where the school system's knowledge was back in 1993!!
I am really hoping to be able to corespond with other parents of young adults with Autism who are also strong advocates for their sons and daughters. This is a tough enough road to travel, without having to do it without being able to share ideas with others who are also facing the similar issues.
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janneane7's Compositions
by janneane7 on 01.28.08 - public - 128 visits
If I actually pulled out one or two of my hairs every time I said “I could pull my hair out” I would have long ago been totally bald.
Andy is driving me stark raving bananas lately with his quirks, stimming and obsessive things he MUST DO!!!! And it gets hard to keep a cheery face and a calm voice when I want to scream “would you PLEASE STOP IT!”
At this very moment he is thudding his size 13 feet (attached to his 295 pound body) while he paces madly back and forth across my living room. He intermittently stops to bend himself almost in half to stim, making loud humming noises and snapping his fingers over and over. After listening to him stim for a period of time, the sound becomes akin to fingernails on a blackboard and I find myself feeling completely on edge. I know this means he is bored out of his mind but I have run out of things for him to do.
Just prior to the pacing he was bouncing on his therapy ball trying to launch himself through the ceiling. It’s easy to tell when he is doing this because of the pounding noise, the way the big TV stand sways back and forth and the way the old windows in our apartment go whompa whompa with each bounce. While bouncing he sometimes takes a break to grab his Dad’s stack of newspapers, conveniently located on the end table between his ball and his Dad’s chair, and starts yelling out letters from the headlines; “THAT’S NOT A LETTER B THAT’S A LETTER P, THAT’S NOT A LETTER Z THAT’S A LETTER C…” going on and on and on shouting out letters until one of us yells “Andy please stop with the letters!!!!!!!!!”
Then there are the quirks. Some are benign, for now anyway, like jamming the empty soda bottles down as far as he can into the recycle bag that is hanging in the closet. (I am waiting for the handle to snap from the pressure of him pushing.) Others are ready to drive me up the wall or make me pull my hair out.
Lately it’s caps, rinsing bottles out and draining my sink.
You see when Andy finishes drinking anything in a bottle like a soda or a ½ gallon bottle of orange juice, or when empties a bottle of bubbles, he must fill the bottle to the very top with water and then dump it. This must be done 3 times, unless I am standing right there to warn him “Ok that’s it!!”
Recently when I was sick my Dad, (who is 82 and lives downstairs) came up when Andy was on one of his rinsing binges. I thought my Dad would have a coronary! He started yelling at Andy to STOP wasting the water. (We have a VERY old septic system here and my Dad lives in fear of having to replace it. Any water going down the drain makes him nuts.) I had to scream at my Dad to leave Andy alone, as I knew he was going to go right over the edge if he forced to stop. Not that you can force him to stop… he’ll just rinse more out of nervousness.
Then there are the caps. Andy has decided that some caps on bottles are not necessary, so recently the cap to the FULL ketchup bottle went down the toilet. (Andy’s favorite place to permanently get rid of things he wants forever gone). This morning it was the cap to full bottle of shampoo. He ripped off the flip top and then ripped the cap from the bottle (it was one of the caps you cannot unscrew) and threw them in the trash in my Dad’s bathroom. I was secretly grateful that he didn’t try to flush them and actually considered praising him for not flushing them, but decided against it since he was supposed to leave the damn cap on!!!
And then there is draining my sink. It seems every time I fill my sink to do dishes he comes over two minutes later with something to rinse or to make a gallon of Crystal Lite and pulls the plug and lets all of the water out. As I said it makes me want to pull my hair out.
The challenging part is that these obsessions, well actually they are compulsions, are not something that can be behaviorized away. We have been through this before, like the period when he was throwing drinking glasses out our second floor windows on to the driveway two floors below. We worked closely with two Autism Consultants and we all came to the conclusion that it didn’t matter what we did, when the compulsion hit him, he couldn’t stop and think about the repercussions because the urge was too strong. With the glasses it was easy. We finally got rid of them and switched to plastic. Problem solved.
But with these other compulsions I grit my teeth, try to stay calm and wait for this to pass. At least I’m not really pulling my hair out. I don’t think I could pull off the look.
Comments(4)
KevinLivsDad
Posted on Mon, 28 Jan 2008
lol, well my day is coming I am sure. My daughter is only 34lbs at the moment. Her walking in circles & bouncing on the ball. Is still kinda cute.. I am sure it will be not so cute one day. I am slowly trying to tone them down but, know it is a long haul. Maybe some of those noise cancelling headphones will help ;) Best regars & you are an angel in your own right. - KC
carmel66
Posted on Mon, 28 Jan 2008
Sometimes I realize how crazy I must sound trying to get my son to stop with a compulsion - although with about 80% of them, he can tone it down. The other 20% set my teeth on edge - - but so it is with my daughter too. Do we worry more for them or ourselves??
shannonj
Posted on Mon, 28 Jan 2008
Oh, boy, we've got quirks around here too. Except, I'm almost too afraid to list them all....What can we do for these amazing boys to help them feel calmer and less anxious so they can enjoy life fuller and worry less? I think I will spend my life trying to figure it out....
cjkellie
Posted on Mon, 28 Jan 2008
gee I think our kids may be related.. I swear they sound a lot alike. I don't think Chad ever just walks around here. he is always jumping and pacing. I know just how you feel about trying to keep him busy. It's just impossible to do. I enjoy reading about Andy and wanted you to know that you make me smile so much as I am learning about your amazing son. Thank you for being so honest.





