I quit
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| 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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Renee-You just desribed my feeling exactly and Mike sounds A LOT like Jake. I feel left hehind like I should be doing more as a parent-I have quit my full time job to be home when Jake gets here-I went from making 12.50 asn hour to nothing. Now I am wa=orking pt time to be here when he gets home at 7.50 an hour-we dont have a lot of $-and we don't do a lot of normal family things-we can't go to the store, we can't have people over-I have no social life or even friends for that matter.
I am sorry you have to leave because I SO SO SO relate to you. I go to the othe site but my computer has plblems and won't let me read much -it alweay freezes up.
PLease keep in touch!My email is lazer43@cox.net
Liza
Renee, I haven't been on the board all that long, and I know we don't know each other very well. But I sincerely hope that you don't leave this board. I've felt inspired, comforted, and supported by you in the few months since I introduced myself here. I am so, so sorry that you feel alone and unsupported. We're really all struggling in this crazy landscape together, you know? And I know I'm not the only one who would be the poorer if you left.
Jennifer
(((Hugs)))
I've never heard you sound so defeated. I too have my opinions about the Dr.Phil show but to be honest I don't think I know enough yet about AS or my sons issues and how they will affect him in the future to share my thoughts. I do know it scared me to think my cute and adorable little 2 year old could turn into a raging bull in his teens. I think that a lot of the responses that have been posted about the Dr.Phil show have a lot to do with fear.Fear that people will think of AS only as how it was shown on the show when in fact it includes people of many degress of ability and intellect as we all know. Every book I have ever read about AS has talked about anger and rages so I wasn't shocked to see that. The majority of moms including myself on this site have young kids who have yet to reach the dreaded teens, so right now, we are dealing with little ones who have yet to deal with all the stresses that come during that period so it's hard to imagine and even scarier to think that could lay ahead. Autism is such a mystery and what works for one kid won't always work for another.One child with AS can sail through life with a few minor srapes and bruises while for another it's a constant battle to stay on top and in control of their lives. I'm sorry you feel so misunderstood because you have given me very valuable advice and you inspire in me the will to keep going and to keep fighting for my children. I would hate to lose someone so valuable with so much wisdom.
Teresa
Renee,
You have given more support here than anyone I know. You DO have more experience both personally and professionally with the broad range of the autistic spectrum than most of us here. I and many other people here have learned so much from you and I am so sorry that you are not getting the support you need. You really deserve to be supported because you give so much to us and the community.
I hope you don't decide to leave. I am sure it doesn't feel like it right now, but you are very loved here.
For my 2 cents, Dr. Phil did show a side of AS that isn't often portrayed. Like you, I was actually pleasantly surprised by him, having seen things he did in the past. I think it would be impossible, as you say, to show every aspect of the spectrum in an hour.
But Dr. Phil is just a tv show, you are more important to all of us than that. I can't tell you how much I will miss you and I am sure others here feel the same way.
I think part of what is happening is that ASD has touched us all and deep inside we are angry that our kids are affected by this. We have all sacrificed. Those like you with older children know this better than anyone. Maybe we all needed a target for that rage and Dr. Phil just happens to be it right now.
But I hate that you are feeling that anger too.
I just think we should remember that tv is tv. It is a great medium for education, entertainment, but it is also a business and it is not real life.
I hope you will think about staying. We'll all forget about Dr. Phil in a week, but we won't forget about you!
Katherine
Renee,
You have contributed so much to this board. Please don't leave.
I'm sorry that I contributed to the fact that you now want to leave.
I understand that Asperger's in itself varies from person to person.
You are right, we don't know what happens in Alex's home from day to day. We know only what we saw. That was my biggest problem with the show.
I felt it was slanted so far in one direction that is wasn't fair to anyone. Not even Alex and his family.
I am sorry you feel the way you do. This board is extremely supportive and informative. In a large part, due to you. I value your contributions.
Again, I am very sorry.
Crystal
Renee,
I can't really say it any better than the others have. You are an important part of this community, as far as I'm concerned. I have come to respect you and what you have to say about autism and parenting, and I enjoy reading about how your kids are doing.
I hope you decide to stick around. If not, I will miss having you here.
Evelyn
renee,
you know, i didn't even read most of this dr. phil balogney! we all need to remember that us moms are under alot of stress a majority of the time and we don't need an imbesole like him playing on our sensitive areas.
renee, you can't leave. you are like the wise indian woman of the tribe here! you are the alpha and the omega! i know it may be hard, but please know that you are much appreciated. this issue just so happens to be a hot topic right now. perhaps we should not debate so much here and be more of a support board.
regardless, you know where to find me--and you know how much i need your friendship these days. valerie
Renee,
I'm at work, so I have to keep this short.. but don't leave us!!! I for one, value your opinion and experience so much. I could sort of sense your frustration when this whole Dr. Phil thing erupted.. and I'm sorry if my comments caused you or Liza any pain. I don't think any of us intended our words to hurt anyone.
This is just my 2 cents on the whole thing.. I think some the negative reaction to the show on this board and others was based on the fact that alot of us don't really like Dr. Phil to begin with. I know I don't like him. I think he's a fraud. So when he covers a topic I know a little about, I can tear the show apart, and criticize it for what it is.. entertainment without much educational value. Again, I apologize if anyone misunderstood. I did not have a problem with displaying the rages, another aspect of a very complicated disorder. My son is only 6, I may have to deal with this when he is older. And I don't really fault the family for their response to a diffcult situation. I'm sure they are doing their best. But I do question the motives of any family that "airs their dirty laundry" on a tv show. I'm a very private person, and I can't imagine ever subjecting my son to the anxiety or sensory overload of being on a show like Dr. phil, or Nanny 911, or anything like that. But that's just my opinion, but it may have affected my overall opinion of the family.
I have only one aspie, and it IS a difficult life. That's why we need to support each other as much as we can. So please continue to contribute to the board.
Kate
Renee,
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Teresa,
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