I quit

iVillage Member
Registered: 03-26-2003
I quit
16
Fri, 01-20-2006 - 12:57pm

I just don't think I fit in here anymore. For years (over 6) I have been coming her to get support and give support but I really think that it isn't a good fit for me anymore.

Yep, this Dr. Phil thing sent me over the edge. It has been very difficult to seek support for behaviors that I know either most people here have not yet or are lucky enough not to see. I was hoping that this show that at least we would gain more support from the AS community but instead it has caused a bigger divide.

Here and on another board I moderate there has been lots of blaming of Alex's parents for his problems. Lots of blame on Dr. Phil for not showing the positive sides of AS. There have been a ton of shows about AS and the more positive sides of it. This is the first time ever I have seen rages addressed and sure he could have done a better job. And sure Alexs parents did yell an awful lot, but that is the part they chose to show on tv. Who knows what was editted. But man for once it was nice to hear someone on TV say that it was not the person with AS's fault. That perhaps it was the wiring in the brain.

The other board I have been on said the parents have known for 10 years and have done nothing. That the mother is more interested in going to work out of town than her son. How can we know those things? Have we walked a mile in her shoes? Do we know her personally?

I have 2 kids with AS and one rages. The other has typical meltdowns on rare occasion (and hadn't had them for years until puberty and middle school hit). Both are wonderful wonderful kids that I am proud of.

I have given up my career, most of my friends, my social life, lots of money, lots of me to take care of my son. I just started back to work after 6 years. I took a job as an aide to a person with an associates degree. I have a bachelors and credits toward my masters. I have a teaching credential. Why did I take a job as an aide to an aide? Because my son can't handle going to a day care or afterschool care and no one would understand him or take care of him properly.

Yesterday I was discussing summer plans and asked Mike if he wanted to try camp this year. HE said only if I came. He knows I am his interpretter. He doesn't feel ok anywhere without me. We started evals at age 3. We tried a variety of meds for 4 years. A year ago we took him off all meds and do a totally organic sugar free diet and supplements. I have interventions imbedded in my home life.

He can tantrum for an hour and I will remain neutral and yet everytime in public he has a problem it is instantly assumed I am a worthless parent. I would hope that those with children with autism would understand.

At basketball his coach told me to back off and let Mike do it. He was ok he said. It was part of life. I was constantly going in being mike's 1:1. So what happens when I backed off and let the coach handle it? A kid got beamed with a basketball and another got nearly tackled. The coach had to phsycically catch Mike to stop him.

But that is all people see. What they don't see is that he is the one boy who makes sure to pass the ball to the girl with downs so she has a turn. That is he the kid during the race that will hang back an encourage the same girl on. That he cheers just as loud when the other team gets a basket. No, what they see is the kid who can't hear in a noisey situation so they assume he is being non-compliant. What they see is the kid who gets overstimulated and overwhelmed so when some little bratty kid comes up behind and pushes him he attacks out of fight or flight. What htey see is the kid who screams nasty things when he gets frustrated because he doesn't understand what is going on.

Is my home a safe haven? Ya, you bet it is. His only one but it doesn't make surprise things not happen and his brain suddenly able to deal with life. For us safe haven means more than not yelling. It means you only go to one store with him in a day and that you try not to go to any at all. That fun trips we want to take as a family need to be thoroughly planned with an out because he may lose it at a place like sea world or the zoo if he doesn't have an exact plan or we venture from it. It means that we can't have parties.

It means we rarely have friends over and when we do I have to try to explain Mike and hope they understand.

Rages are a very real part of life for some people with autism spectrum disorders. I think as a community we need to learn to deal with that. Maybe Dr. Phil isn't the only one who needs to learn more about AS.

I am off to find a community of people who understand that.

Renee

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iVillage Member
Registered: 10-24-2004
In reply to: rbear4
Sat, 01-21-2006 - 11:01am

I am very sorry if I in came here after years of absence, and ended up upsetting you or anyone else. I had no right to just hop back in and help stir the pot. As the mother of an “adult” aspie it looks like I have somewhat forgotten how terrible and stressful it actually was.
iVillage Member
Registered: 03-26-2003
In reply to: rbear4
Sat, 01-21-2006 - 11:22am

Renee wrote: "Rages are a very real part of life for some people with autism spectrum disorders. I think as a community we need to learn to deal with that. Maybe Dr. Phil isn't the only one who needs to learn more about AS."

That is the EXACT reason all of us NEED both you and Liza here......we do need to learn more about AS.....I'll be the first to admit it.....I know virtually nothing about AS. I never even heard the word "aspergers" until October 2005. I believe the majority of us here have children under the age of 10 yrs.....we may not have ragers now but who knows in a couple of years....we benefit greatly from moms like you and Liza....BTDT....visited that level of hades, had my passport stamped and survived.

I understand needing a break from the boards....I use to be a CL on one of the money boards....took a long needed break. Do what you have to do for yourself and your family....no one can fault you that.

I hate to see you go (you too Liza) - I think you are a valuable asset here. Know that you both will be missed.

Take care,
Christie

iVillage Member
Registered: 06-26-2003
In reply to: rbear4
Sat, 01-21-2006 - 4:28pm

Renee, I sure hope you haven't left the board without looking back and seeing all the people coming out of the woodwork to tell you how much you are and have been appreciated. I haven't posted in probably literally 'a month of Sundays', so you may not recognize me, but I too have been coming to this little corner of iVillage for a half a dozen years (my ds with PDD-NOS turns 8 in about 2 weeks) and your moniker is one I've always "known". I would really miss your presence and what you bring to this board if you leave. This thing is kind of like a family; there are agreements and disagreements, times when you need to walk away, time when you need the support, times when you get so p***ed off you want to be part of a different family....but you still have a family to come home to. The things you wrote about (*really* eloquently, by the way) are things I recognize (especially that reaction to getting whomped on the back by some bratty kid! Playground or P.E. games of "tag" have never been popular with me as a result!) Hope you'll reconsider leaving and return!

-Hannah

iVillage Member
Registered: 01-15-2006
In reply to: rbear4
Sun, 01-22-2006 - 12:11am

Renee,

I haven't been here very long, but you are a valuable and needed member here. You have the wisdom to guide us along this journey. I'm sorry that you don't feel supported here. My son is almost 5 and was diagnosed last July. I don't know alot about Asperger's as it is all new to me, so I'm not sure how much help I'd be there, but if you needed a shoulder to cry on, I do have 2 of those which I've had for a long time, maybe that would help some time. Sometimes a break is good, please don't leave for good...do what you need to do to "fix" you. You will be missed if you do go.

Carol

iVillage Member
Registered: 09-11-2004
In reply to: rbear4
Sun, 01-22-2006 - 12:19am

I haven't even had time to read your entire post or any replies...but I wanted to say that the anger and rage was what made us seek help for my daughter in the first place. That was our red flag. I also haven't had a chance to watch this Dr Phil yet as I simply recorded it. I know he can't show every side of AS in one show but it would be nice if he could do more...

Don't leave Renee, and if you do email me again!


Our Webpage: www.aliandpeanut.com

Our local Down syndrome group:

iVillage Member
Registered: 01-27-2004
In reply to: rbear4
Sun, 01-22-2006 - 7:40am

Oh Renee - don't leave!!! I come here all the time for questions and support and you are always right there!!! You are a wonderful source off both and everyone would surely miss you! I think that people just compare their own kids to AS and have a hard time seeing the whole picture for themselves.

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