15 Jun 2007

Parenting is Not So Easy

Mom26children has a post which got me thinking.

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....

I agree that you have to keep parenting the child. I don't agree that I cannot allow him to act inappropriately in public. Not if acting appropriately means emulating what would be expected from a typically developing child.

My son often behaves in ways that would be described as 'bad'. I don't doubt that his behaviour disturbs other people too. For example, last week I took the children to the zoo and met with several other home-educating families. Duncan wanted to sit in his Major buggy (large pushchair thing) which is good because it gives him somewhere to go and hide under a coat when he wants some peace.

We passed the playground and most of the children went on the equipment. Duncan sat in his buggy for about 10 minutes watching them, though I asked him a few times if he wanted to play. Suddenly he jumped out and climbed the steps of the popular and crowded climbing frame/slide. He screeched happily as he went. When he came down the slide, he didn't want to get off. He wanted to climb up the slide. I told him that children were coming down, climb up the steps. He refused and started to cry hard. I had to hold him to stop him from climbing up while the others were coming down. I tried to comfort him, telling him we'd see the animals. He just got into a major state. It was unexpected. He screamed and thrashed. He hit at me, though as always he held back from actually hurting me. It would have looked bad though. I sat on the ground beside him for about 15 minutes while he got settled again. The place was packed with school groups and loads of little kids were staring at us. The teachers were staring too, but more discreetly.

See, he kicks off some times. He tantrums or makes noise or flails his arms around. It looks bad. Gordon gets really upset when this happens in public, but I don't. I'm getting better at helping him, he's getting better at calming down. People can stare and tut and whatever all they like. I don't have the same expectation of him as I do of his non-autistic siblings. I would be horrified if either of them had a outburst like he does sometimes.

This is part of his autism. It's part of his developmental disability. If he were unable to walk, I wouldn't expect him to run. If he were blind, I wouldn't expect him to see. He's still learning the skills to regulate his behaviour. He gets overwhelmed. He can't explain what it is that is upsetting him, or what it is he wants. It feels to him that his world is falling apart.

While he was upset last week, I was trying some of the stuff that I've said before to help him. I empathised with his mood, told him that I knew he was angry. I told him I would help him. I tried to playfully ask him to 'take the grump out and throw it away' (it helps sometimes!) but he wanted to be angry. What eventually helped was my telling him that he is angry today, he will be happy tomorrow. He often refers to any time in the future as 'tomorrow'. That seemed to make him realise that this feeling would go away.

I seriously considered dragging all the children back to the car and home. Is that what is meant by removing them from the situation?
But that would have been unnecessary and Duncan wouldn't have learned anything from it. I have cut events short before, but it wasn't warranted then.

Afterwards, the day was lovely and we all had a fantastic time.

I find it hard to parent Duncan at times, harder than with his siblings. It's not impossible though. It just doesn't come so easily to me. I'm definitely on a learning journey. We both are.

13 comments:

Ed said...

I was removed from many situations as a child. As an adult I remove my self from situations.... maybe what I learned was that all emotions that I have are too overwhelming for me deal with....maybe that learning assertive ways of expressing my emotions is more than....
I wouldnt comment on someones blog if it might create an emotion in me or them that presented itself to me as overwhelming.... I would avoid that.
Its refreshing to hear that not all autistics are taught what Ive been taught.If all autistics felt the need to shy away from eveything that I do our adovocacy would not seem very hopeful.
As always,thanks for writing and creating better opertunities for people like me.

Club 166 said...

Thanks, Sharon, for a great post. I, too, felt a little off after reading "Mom26's" post.

I see her point that we must not stop parenting/disciplining kids just because they are on the autism spectrum.

But I feel much like you do. Expectations need to be changed, and individualized (if we ask this from the schools, must we not also demand it from ourselves?).

We all walk a line sometimes, trying to guage when it is going to be ultimately helpful for our kids if we stay in a certain environment, vs. when things have spooled so much out of control that it's best to retreat and regroup a little.

From what I've read, I think you've got parenting down with spades. Rock on!

Mom26children said...

Hi Sharon,
Point taken and received on your "rebuttal" to my post.
I just get really irritated when a parent of an autistic child uses the excuse of "autism" for their childs bad behavior.
We all want our children accepted into society, but some parent's are not willing to prepare their child for society.
Our oldest and youngest get overwhelmed in public situations at times. Caitlin doesn't like certain music and will put her hands over her ears and hum...that is her way to cope. Kiernan will rock and hum.. that is his way to cope. I just don't feel it is necessary to look at any person around me and explain, "they are autistic"....I think that is obvious.
I did not mean to offend anyone, but I seem to have that gift at times.
But, recently, with the observations of autistic children in our community, it seems parent's are overwhelmed and forgot they have a child to parent.
Jeanette

Joeymom said...

One of the main reasons I'm reading all these blogs is to get ideas like yours- throw the grump away! Fabulous! Thank you so much for this post!

kristina said...

It's not easy but reflections like your here make it much less difficult, and certainly less lonely.

I have found myself sometimes just saying to, Charlie of course you're mad about this I would be too---and then I add, it's fine that you're mad. You're supposed to be!

He usually cheers up in a few minutes after that.

Getting mad is not a catastrophe---I rather think the rest of us do the same and have learned to "work through it."

Steve D said...

Hi Sharon -
I agree on all points. Last weekend, my son continued his fairly new habit of grabbing our waitress' arm in the restaurant and demanding that she bring him pizza. "I want pizza!" Bring me pizza". In this case, I do feel the need to explain to the waitress that he is autistic, because people are so sensitive to physical contact. In the meantime, we continue to explain to Jason that this is inappropriate, that there will be consequences if he continues, and that leaving the restaurant without pizza is one consequence. In other words, I tolerate behavior from him because the root of the behavior is not willful disobedience, but instead a lack of understanding of social conventions. But I also work to teach him the correct behavior, reward successful learning (ice cream after dinner) and punish behavior which has already been demonstrated to be understood by him, but he is still not doing.

Estee Klar-Wolfond said...

Steve,

I do the same -- and I don't consider it ABA as some parents would claim that teaching how to behave is ABA. It's not. We're just teaching our kids period. And we continue to do so by learning, learning, learning...

Lisa/Jedi said...

Right on, Sharon! Agree with Jeanette's point about autism not being a reason to stop parenting a child (& resonate to her frustration with parents who can't get beyond being overwhelmed & into the really rewarding part of having a child, autistic or not :), but I also agree that I have to meet Brendan in the middle when it comes to behaviour(s). I usually leave mentioning that he's autistic to situations when people are actively concerned about him/us & are enquiring (mostly to avoid embarassing Brendan, since we try to leave the labelling to his discretion), but feel perfectly fine saying so when appropriate. Projecting a sense of calm seems essential to me, for Brendan & those observing- Kristina's mentioned this, too, in her blog. We have been in the habit of naming the emotions that he seems to be having (he's old enough to correct us now, if we're not accurate :) since he was very young, & we think this helps him to get a sense of control over himself, knowing what's going on internally.

I know that I had no clue about what it was like to parent a kid with extreme behaviors until Brendan developed the OCD/Tourettes a few years ago (quite some time after we discovered he was autistic), but I'm happy to say that I'm starting to feel at least up to the task these days. It's never dull... but Brendan is learning right along with us & we can see the rewards of working together to help him manage his sometimes overwhelming feelings. Thanks for sharing your feelings about this!!

mumkeepingsane said...

I'm so rarely on the fence about an issue that I'm laughing at myself right now.

I agree that parenting autistic children is very important and using autism as an 'excuse' for your child's behaviour bothers me (when is see it or hear about it).

On the other hand I also agree that in some cases we can't always just drag them off so they don't disturb other people's well ordered lives. Patrick learns the most by pushing through a situation where we're helping him to understand more appropriate responses than the ones he's giving.

So I guess what we do is a combination of approaches. We set high expectations, discipline most behaviours that are unacceptable, but if a learning moment comes up then we use it in any way possible even if that means a few uncomfortable minutes of unacceptable behaviour. We've also found that repeated exposure to situations help him to acclimate to them.

I think too we have to remember that every child is different. At different places on the spectrum you're going to have different opinions because what you're dealing with on a day to day basis could be much different than the next parent.

natterandramblings said...

Hi Sharon, This comment not at all related to your post and maybe you have already seen the news at NY times anyway please disregard if you already know about it.

http://www.nytimes.com/2007/06/15/business/15recall.html?em&ex=1182312000&en=7a929d3bb6a3b957&ei=5087%0A

some thomas tank engine toys are recalled because of the paint.

Anyway. Cheers.

Sharon said...

Thank you all for your comments. I'm sorry it has taken me so long to respond, but I have not been at the computer for a few days.

Hello Ed and how nice to hear from you again! As always, it is good to hear what you have to say, about what has been difficult or what has helped you and try to learn from it. Your advocacy is every bit as important as that of more assertive (or just plain bolshy) people!

Hi Club 166. It is about walking a line, and sometimes I wish it were a little broader, or that I had better balance! Thanks too for your kind words.

Jeanette, I hope I didn't imply that your post offended me, as it really didn't. It just got me thinking, and I didn't totally agree with how you had worded some things. It is all about being a parent. We agree that our children need to be raised well and educated, more than any therapy or treatment.
I want to help prepare Duncan for society as best as I can, but also I expect society to broaden it's definition of acceptable behaviour. Acting autistic does not have to equate to acting badly.

Joeymom, sometimes when he's not quite ready to 'throw the grump away', I ask him to give me some of his grump, and then I act all silly and grumpy, brow furrowed, saying 'grrr!' quoting a few choice lines from Thomas the Tank etc. That might make him laugh enough to want to 'put some happy in his mouth!'

Kristina, you're right to say 'getting mad is not a catastrophe' and that's what I want him to learn.

Steve and Estee, it is just teaching and NOT ABA!!
I tell people Duncan is autistic when he does something that directly impacts on them.

Lisa, I think it's important to label the emotion that seems to be expressed too and have done that since long before Duncan could say a word. It seems to have helped because now he will often say that he is so grumpy and sad, when he is. I wouldn't tell him not to feel a certain way, but might reassure him that when it's a bad feeling, it will go away.
I am not so good at projecting a sense of calm, though I can fake it a bit better when we're out and about. It's definitely a skill I need to improve.

Mumkeepingsane, it's a good point that all children are different and appropriate expectations for each must be applied and we can remember that when it appears to us that other parents are not doing a good enough job of parenting.

Natterandramblings, thanks for alerting me to that. I will have to investigate further.

Anonymous said...

I am not a parent of a child with autism, rather I am a special education teacher who works with autistic children. I think that you nailed it in your last post when you said that acting autistic does not have to equal acting badly. There is a major difference. If anyone were to read research about autism, they would see that autism comes with many many behaviors, and they are all different for all children. I know that people stare in public. I have been in public with a NT child before and after starting a tantrum, I did notice that people were staring. That is just going to happen with some people. But you are right, the public in general will eventually understand this disability and know how to respond when behaviors are exhibited in public. I believe that we are likely to see some of these young children employed in some of the very stores they are tantruming in now. The more in public and the more awareness, the more the public is going to understand. I don't know this for a fact, but I would think that it's easier to remove a child from the situation than it is to try and calm them in the same enviornment or just let them exhibit behaviors. I have people ask me all the time if autism effects mental thinking. Of course this is a resounding NO, but my point is that right now I don't think that the public has an understanding of what autism is or why they are seeing the behaviors in public. I also agree with whoever said they couldn't remove their child in order to keep someone else's well ordered life intact. In my opinion, there is NEVER a reason for a mother or father to stop parenting their child. But there is a big difference between not parenting and having a child with autism that tantrums in public (or displays other behaviors such as rocking and humming) that might disrupt other people. Thank you for writing a post that might promote awareness into what behaviors we are likely to see from an sutistic child in public.

I know this is getting really long, but I have a student who is obsessed with a certain restraunt. EVERY TIME she is in the car and passes this eating place, she has a MAJOR meltdown, to the point of injuring herself. The problem is, there is no way around these certain places so she has to be driven past them daily, most of the time more than once. The mother and father of this child have tried EVERYTHING they can think of to teach this child that there are times to stop and times to keep going. (Even if mom or dad stops at the first place and gets her something to eat, she will continue to tantrum at the sight of every other one she passes so it's not a matter of wanting the food.) She has never learned this idea, but do we say that they aren't parenting because this child tantrums like this and might be disruptive to others. (That's just an example of her tantrums, she also does this in public places over other things.) I don't happen to believe they aren't parenting nor do I think they just say "oh well, he's autistic so he's just going to do that." They are trying to teach a replacement behavior or some other routine. They are for sure parenting.

It sounds as if you are doing a great job parenting your child. LIke I said, hopefully more posts like this will allow the public to become more familiar with why some kids display the behaviors they do in public. I would much rather have a stranger know my child was autistic than to have them think they were NT and acting like a spoiled brat.

Sharon said...

Hello anon and thank you for your comment.
You wrote that you think it may be easier to remove an autistic child from the situation when they're having difficulty coping. I think it depends on the individual circumstances. I don't understand some of your other points; you say you agree with the person who objected to removing their child in order to keep someone else's well ordered life intact, but you then say:
'there is a big difference between not parenting and having a child with autism that tantrums in public (or displays other behaviors such as rocking and humming) that might disrupt other people.'
I'm not sure which of these 2 views you take.