What is happening to the world of Autism?
There are so many fights going on right now in the world of Autism that if we do not get our act together, no one outside the world of Autism is going to take us seriously.
I am speaking at an Autism conference next week. I am speaking as a mother of 5 Autistic children. Not as a mother of 5 children with Autism. The reason for that....my 13 year old daughter Deirdre explained to me, in very simple terms (because that is what I need) that she wants to be known as a person who is Autistic.
The reason, you might ask......If she is an Autistic person, it is who she was born to be.
If she is a person with Autism, the Autism can be taken away.
That reasoning I can respect.
When I introduce my children, I do not introduce them as Autistic children. My children are individuals who happen to be autistic.
I am lucky, they do not misbehave in public..they learned very early that they would be removed from situations if they could not behave appropriately in public.
Even Caitlin and Kiernan know this.
Just because you have an Autistic child does not give them free reign to disturb others in a public situation. If that was the case, we could allow any person to disrupt any situation.
If you want your Autistic children to be taken seriously, you must take your Autistic child seriously.
How can we prepare our Autistic children for their future and being accepted by society if we allow them, as children, to act inappropriately in public?
Just because your child was given the diagnosis of Autism does not mean you have to stop parenting your child....
About Me
- Mom26children
- I am the proud mother of 6 children. 5 of our children have autism. We do not feel our world has ended, but just begun. We do not chelate, intervene biochemically, give shots of any kind, practice ABA, etc. We treat them as we treat any humanbeing. We treat them with kindness and respect and expect the same from them. They are exceptional children.
Wednesday, June 13, 2007
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28 comments:
Absolutely!
I don't think that parenting my autistic son is hard. In many ways he seems easier to handle than most NT kids. The main difference is that I don't find a lot of good advice available (for instance, all the parenting magazines and manuals, all the friends and family who are used to raising NT children, and all the school teachers who know how to educate NTs). So what happens is that I feel alone sometimes; having the internet community of autism parents is great, but I wish I had more friends in my city, in my neighborhood, that shared similar experiences and who wouldn't be puzzled or taken aback my child's behavior or diagnosis.
Leila,
Since working with parent's of Autistic children and observing how they react to their children's behaviors in public, in my opinion, parent's get the diagnosis of Autism and QUIT parenting.
When receiving the diagnosis is when you should increase the parenting skills. Our children require more attention, at times, to control their behaviors.
I know, I have 2 that would scream and throw tantrums in public places if we allowed them to...we do not.
They are removed from the situation that is upsetting them.
I do not need a tee shirt or a button telling the world that their autism is the reason for their behaviors. If that were the case, any person could get away with bad behavior for any disorder or label.
Mine would read "I have terminal PMS-What is your excuse?"
Just because your child is autistic does not give you the right to have them disrupt or disturb any persons shopping, dining or recreational experience.
Again, Just my opinion....
OK, I'm game. Joey likes Walmarts. He sits in a cart the whole time. Apparently, some people find this offensive and disruptive, and tell me so.
Once while we were waiting in line, it was a narrow aisle and he really got upset, and screeched. As he usually loves the store, this took me by surprise... but was definitely disruptive. On top of the offense of having a 4-year-old in a cart, I can tell you I got a lot of dirty looks. They got worse when I simply informed the cashier I could wait no longer and removed my screaming child from teh store immediately, placing the cart full of items into the hands of another store employee, and left.
So... I get a little titchy about people who presume on another's parenting, unless they have some hard facts to back up the accusation of "not parenting." Was there more to this?
Hi Joeymom,
I can beat that...my very tall 6 year old also sits in a cart...at Walmart, at Target or at our local grocery store.
He lets out a screech occasionally also. I am not talking a screech. I am talking full-blown temper tantrums.
I have never taken notice to anyone looking at me putting my child into a cart, and he is really a big boy.
I do believe, because my oldest and my youngest are obviously autistic, people can assume they are not your normal child.
I do not mean that you cannot shop without an occasional tantrum, but I also believe there are parent's out there that use Autism as an excuse for their children to misbehave.
We all do our best as parent's, but I believe Autism is not an excuse for misbehaving.
I started to write a comment but it got so long, I wrote a post instead!
I have never taken notice to anyone looking at me putting my child into a cart, and he is really a big boy.
They notice at our WalMart. Sometimes they even comment (oh, he's getting too big for that) I don't enjoy doing it(it's the best option for now), and sometimes I worry that the cart will tip. He has learned to cooperate in the task; NOT grabbing my hair whilst I hoist his belly to my shoulder, putting his feet through the holes, and not hyper-extending to allow himself to slide down in. It's quite noticeable. ;)
not screaming-tantrum-noticable; thank heavens!
This is something I had to wrestle with last week. I was waiting in line at the grocery, Bugaboo got antsy and was screeching. I was praying that the cashier would hurry changing the receipt tape. So, as she finally rang the purchase up and I reached for my wallet to pay, he climbed up to the conveyor belt and grabbed something out of the order of the person behind me. Mind you, my child barely eats. But he saw something he wanted. A cookie.
The woman behind me was flabbergasted. I took the cookie (which was wrapped in plastic) and handed it back to her, as I told Bugaboo that he could not have the cookie, it was not his. I apologized to her. She flipped out on me, saying that the cookie was a gift and Bugaboo cracked it and now that he touched it she didn't want it anymore(because what he has is contagious? i don't know). Then she shoved it at him. I took it away from him again, put it on the conveyor and repeated, "Ma'am, I've very sorry. He did not understand that he couldn't have the cookie. And I do not want him to have it. I apologize." She started arguing with me, basically accusing me of allowing him to grab the cookie. That's when I finally said, "MA'AM. HE's AUTISTIC. HE'S STILL LEARNING AND DID NOT UNDERSTAND." She gave me a dirty look rolled her eyes and stalked off to grab another cookie. I was so angry, first of all for telling her something that was not her business (everyone in the store could CLEARLY tell he was different)and for her not being patient. I handed the cashier the money and ran out, dropping change as I left. I was shaking I was so upset!
I thought perhaps I could have handled it better, but I also think that society is just not patient with our kids. I parent my children just like other people. They are not to misbehave in public, they are not to scream and cry, they don't get things to shut them up in stores. I demand typical behavior from them and they know it. But I can only do so much. All I was asking for was the woman to understand that I was doing my best to teach him. He is four years old. I know many "normal" 4yos that do much worse...
SOrry this is so long, I guess you could say this resonated with me!
oh dg. How awful HER behavior was.
Hi Domestic Goddess,
There is no doubt you did the best you could...that is so not my point.
All I want to parent's of children, autistic or not, is to understand that they need to not use Autism as an excuse for bad behavior.
How can society accept our children if the parent's of these children give into the label of Autism and let behaviors get out of control.
I really do appreciate you as a mother and would never want to insult you.
Please know that...I just get frustrated with parent's who have autistic children who believe it is okay to condone bad behavior because of the Autism.
Great to see you back blogging, vacation?
Having read the other comments and linked blogs (Sharon) we try hard to not use the Autism as an OK for bad behavior. However, because of sudden outbursts from Sarah(5) and Ammon(3) we do use Autism t-shirts to warn others as to what is going on.
Stress is a major factor for us when we take the entire group somewhere. But, recently it went a LOT better because of the t-shirts. We still work hard on the parenting and are always looking for advise from the voices of experience like yourself.
Please email us at: autism_bites@yahoo.com
Mom26,
I know you weren't trying to be insulting. For the most part, I agreed with EXACTLY what you said. I don't want to use the fact that he is autistic to explain his behavior. I don't want people to condone his behavior because he is autistic. Too many people make allowances for him at 4yo. When he is 7, it won't be so cute. Know what I mean? I may be mean to some people but I do not pick him up unless he is bleeding out the eyes, he dresses himself, he feeds himself, he walks himself (as much as he is physically able, as he has other medical issues) and gets in and out of the car himself. The more people do for him the less independent he will be.
So I parent my kid. I don't parent the autism. That is just a personality trait, as far as I am concerned. What drives me nuts is that people assume my child is defective or that I am unhappy or that he is a brat out of control. Not so.
BTW, thanks for making thought provoking posts. There are some things that people just don't think about. This was a great topic!
Mom26children, I wouldn't say that those people "quit" parenting, but there is a phase where we feel quite lost as how to do it, and we have to reacess all our parenting skills, because we are dealing with a child that has a biological reason for some particular behaviors. For instance, my son will not sit quietly on a restaurant's chair or booth, he won't sit still for more than 3 seconds, because it's physically hard for him not to keep moving (it's always been like that, since he was a little baby). He stands up, sits down again, this kid doesn't stop moving until he falls asleep. We try our best to educate him on that, but we always keep in mind it won't be easy because his brain is wired differently.
Hey Mom, If you're ever in NH, I challenge you to take my kid out in public and make him behave. You can use a leash and a whip and it won't make a bit of difference. You're lucky your kids aren't severely autistic.
You don't have the slightest clue what it is like to deal with an uncontrollable autistic child. Now stop pawning yourself off as some kind of expert on something you've never even seen!!!
Hello John,
Always lovely to hear from you...
You know not of what you speak. 4 of our children were at one time in their lives severe....2 still are considered severe.
Kiernan, our youngest, and Caitlin, our oldest, are severely autistic. Yet, amazingly so, they do behave in public.
If I am ever in NH, I would be honored to meet you and your child. I believe that you do not give him enough credit...but, I still do not understand why you consider him Autistic if you are sure it is the Mercury....
I also assure you, I would take your son anywhere and would not need any form of punishment for him. There in lies the difference between your parenting style and mine.
Jeanette
Mom, I don't use punishment with Sam. He would not understand. I saw your kids on that TV show. They aren't that bad.
John,
You offered me a leash and a whip, I just assumed that is what you used to parent....silly me.
What you saw on television was not "reality"..it was 45 minutes into our lives.
My children would be difficult for others to raise...not for me or my husband.
I know much more than you could ever imagine. My children are autistic. 2 of them severe.
I am not making excuses for their autism. I am raising my children to be the best they can be.
I am thrilled beyond belief that they appeared the way they did on television...that means I am doing my job right. That is, my job of parenting.
What I have seen in the Biomedical World of autism is alot of denial and alot of Bullshit....
Call it a "cure", call it "recovery"...I call it Autism.
I am an expert..I have successfully raised 6 children. 5 of our children happen to be autistic. I know AUTISM...
I will challenge any parent to dispute me...even you...you do not intimidate me.
I have spoken to groups of parent's with autistic children. We all have one thing in common...autsitic children. We all need to unite and learn how to make these children successful autistic adults.
Gee why don't you pat yourself on the back some more. Who made you the expert on what these parents go through with their children?
And as usual you are showing your cluless side. You think, if you just "parent" your child, all will be well. It's not quite that easy for many children with autism and their parents.
I have to agree---your children do not seem severely affected so maybe it is easier to simply "parent" them and get results. Most people need to use intensive therapies and even then it is difficult for children to generalize these skills in stores, restaurants, etc. Don't think it isn't because parents aren't trying because they are.
Get off your high horse--who made you the expert?
And by the way, your husband seemed more autistic in that TV show than your kids.
Anonycoward #1,
My children have been through extensive OT, Speech, Play and Physical Therapies. They worked very hard to get where they are. These children are autistic. 2 of them severe and will need life-long care. I am glad that they appeared less severe on television, but that was 45 minutes of their lives.
Anonycoward #2,
As I stated above, my children are very affected by autism. That it was not that apparent in 45 minutes of television is a credit to these children.
I am sick to death of parent's using their children's Autism as a reason to let them misbehave in public.
Our oldest used to scream in restaurants..we removed her. We did not put a tee shirt on her to explain her behavior. Because she could not handle certain noises and sounds, does not give me the right to let her disrupt someone else's meal.
Our oldest did not talk until she was 9 years old. She still stims. She flaps and jumps.She hums and shreiks. This is done in her space.
And the comment on my husband...how old are you? That is something a grade schooler would say.
My husband was very nervous with the camera on him...unlike his media whore of a wife, he was not comfortable with the camera.
He was overwhelmed with emotion. You saw a condensed version of 100s of hours of tapes taken of our family. EMHE edited and picked what would be shown.
To the both of you....I am an expert because I have put in over 10000 hours with autism. I am informed and well-read on autism. I could teach a course...and may soon do so. I have over 16 years with autism and know first-hand what works and what doesn't for children with PDD-NOS, Asperger's and Severe Autism...why, because I have positive results living under my roof.
Because my children seem less severe to you should prove that....
It is a shame that people who criticize me or my family hide behind Anonymous....are you afraid of something?
There's no manual that comes with any kid. I feel like Ben and I grew up together...
Mom, If you played the odds, 4 out of the 5 could be normal now if you addressed the thimerosal that most likely caused their autism.
Fore, from your own reasoning, if you would just address the thimerosal yours would be to.
Now why does he still need a whip and chain? Biomedical interventions not working? Not thimerosal poisoned? Not autistic?
Patrick
"What I see in the biomedical world is a lot of denial and a lot of bullshit".
Well said, Mom26children! I couldn't agree more. It's so depressing that after one year of diagnosis I've only met hardcore biomed parents so far in my community, and I can't stand that paranoid antivax, mercury poisoning talk any longer.
Best, if your interpersonal skills are as profoundly dysfunctional in your home as they are online, your child probably does need to detox.
From you.
"I don't punish him; he wouldn't understand." Bull-freakin'-shit.
Even a dog can understand that they are hated, seen and treated as a contemptible affliction, and your son is not retarded, he's autistic. (recent studies, assumption basted upon, standard disclaimers apply.)
But be of good cheer. I outlived two utterly useless parents and, dispite being quite autistic in some lights and certain situations, I've managed to cope with life far better than either expected.
We get by with a little help from our friends..
Well...About the public places thing. I agree that we should parent our children regardless of an Autism diagnosis. I am not one that would want my child crippled in society because I was not parent enough to put my foot down..But I happen to have a different approach at the "parenting" part. When out in public Adam would at times have unpleasant behavior because it was just too much imput I would imagine or what ever...Problem is that I HAVE to go grocery shopping and I have to do things...regardless of whether he is having a bad day. Also..a lot of his behavior was due to the fact that he DID NOT want to be there...and I HAVE no choice but to be there. So I ignored the bad behavior and he eventually got used to walmart....and any other grocery stores. By leaving I would reward that bad behavior. It took him MUCH longer to get used to Restraunts and the like because Restraunts we would leave of course...a place like that is a chosen place to be and not a need. So he was rewarded by us leaving and then any time we tried to go again he would start up with the tantrum etc. Basically we had to wait until the "restraunt" became a reward for him to eat out...then he started to comply..lol
Karrie
Just wanted to say how much I admire you for celebrating your children's individual gifts.
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