Dear Autism Mom

I wrote this blog post partly to address the comment below that a mother posted in response to my article “Do You Have The Courage?”  But it also talks about issues other parents have raised to me over the years.  So, to the original “Autism Mom” who posted the comment, I am in no way implying that you have or expressed some of the opinions and attitudes I discuss.  While I tried to address the points you made in your comment, I have included a lot more here, too.

Comment to “Do You Have The Courage?”:

I bet there was a lot more to the spitting story than you share. It’s amazing how you find fault with the parents every time, and fault with the school personnel never. Hmmm, I have read many stories of kids being abused at school, but you seem to think that school personnel is perfect. How are we supposed to manage behaviors when we aren’t even there? When we never see those behaviors! I know, we assume someone is doing something the bring out that behavior in the child. Really, a kid who has never spit suddenly is spitting at the teacher? Yep, makes a normal person question what is going on that makes the child spit? I can’t tell you how many times I was asked “What do you do when your child hits herself in the head with a fist at home? When I had never seen those behaviors at home because I didn’t abuse her into doing self injurious behaviors at home! And then there is my son, who does have anger issues, due to having a traumatic brain injury, but it’s interesting how those anger issues have only been an issue with teachers who were abusive to him. The last two have been kind and caring and don’t bring out the anger issues. It’s interesting that you always find fault with the parents. It makes me wonder why you are so sure the parents are at fault, are you at fault?

Dear Autism Mom –

You bring up some good points.  There probably was more to the spitting story, but all I saw was what the mom posted on the message board — the same things the other parents saw.  My point was that they automatically assumed that it was the teacher’s fault.  No one asked any other details about the story or suggested other alternatives.

You said that your children were abused.  I believe you and I’m sorry.  It’s a horrible thing that shouldn’t happen to anyone.  However, just because you’ve witnessed it with your children doesn’t mean that every child who has a bad day at school is being abused.  Typical kids have bad days and kids with disabilities have bad days, too.  It’s not reasonable to expect that because a child behaved badly at school that it was automatically the teacher’s fault.  Just as we can’t assume that it’s never the teacher’s fault, we also can’t assume that it’s always the teacher’s fault.

Am I harder on parents than I am on teachers?  In this blog I probably am.  (My book is split 50/50 between parents and teachers.  I yell at everyone there.)  That’s because I am a parent and I spend more time working with parents, so I’ve seen more instances where parents weren’t dealing with a situation productively than times when teachers weren’t.  Are all teachers perfect?  Absolutely not.  Does abuse happen?  Absolutely.  Are there more parents who abuse their children than teachers who do?  Yes.  Reading the newspaper proves that.  While we of course have to be vigilant about protecting our children from other people, that in no way says that we’re perfect.

I watched a mother come into an elementary school once after the school had called her eight times to tell her to either send money for her child’s lunch, send him to school with a lunch, or sign her child up for free lunches.  (The school was in an affluent neighborhood.)  The mother replied, “I don’t have time to make his lunch.  If he doesn’t remember to do it, let him go hungry.”  The child was in second grade.  Once I heard another mother complaining bitterly that the school was “doing nothing to teach her child to read.”  I asked the mom if she did the required 20 minutes a night of reading homework with her child.  Her response, “No.  I don’t have time.”  Another mom complained to me once that the school wouldn’t give her child a peer buddy.  Her son was 17 years old, 6’2” and violent.  But she thought it would be great to use another child as a training tool for her son.  I talked to one mom who had a teen-aged son who’d been diagnosed with Asperger’s for five years and was having a really hard time.  The mom was getting a graduate degree, so she was well-educated and able to process complex information.  But she had never researched anything about Asperger’s – not one book, conference, therapist appointment, nothing.  She said it was too upsetting and she didn’t want to think about it.  She was doing nothing to help her child get the help he needed.  One mom wanted her young adult son to volunteer at our program and to work with our primary grade students.  Fortunately I had already heard that he was awaiting trial in another state on sexual abuse of a minor charges.  The mother was aware of the situation but thought working with our kids would be good for him.

I’d very much like to have those people who think that because we are parents that we must be always right, come sit in on the conversations I have with parents.  I’ve talked to hundreds and hundreds of parents.  98% of them are wonderful and doing absolutely the best they can.  But the other 2% aren’t.  That’s just human nature.  No group of people is perfect.

As you point out, it’s very common for parents and teachers to see different behaviors from the same child.  When kids are at school, a lot more is demanded of them than when they are at home.  Typically at school they have to do a lot more that they don’t want to do and they are in an environment that doesn’t completely accommodate them. They have to live with other people’s schedules in a classroom that has to accommodate the needs of 10 to 30 other students.  Sometime the child has more behavior difficulties at home, typically because they’ve held it together all day at school and they meltdown as soon as they get to someplace where they can relax.  Sometimes the child can’t hold it together at school and the behaviors happen there.  My child was like that – his behaviors were much worse at school than at home.  Not because he was being abused, but because being around so many people all day when he didn’t understand their social behavior was incredibly stressful for him.  At home it was quiet and he had far less work to do.

Also, since my target audience is parents and teachers of kids with mild autism, it’s very reasonable to expect that the kids will learn alternative ways to deal with a problem than spitting on people.  These kids aren’t dumb and aren’t incapable and it’s incredibly insulting to assume that they can’t learn to control their behavior.  And they better learn alternative methods of expressing themselves by the time they’re adults otherwise they won’t be able to hold a job, go to college, have a romantic relationship or otherwise reach their potential.  Most of these kids don’t get services from regional centers or qualify for other state assistance.  They are going to be in the competitive workforce.  No one is going to make accommodations for them if they don’t have basic social etiquette.  Read the ADA.  Half of NASA has mild autism but they don’t get to spit on their co-workers.

By assuming that the whole world is going to change to accommodate our children, we’re not only selling our kids short, we’re putting them into a dangerous situation as adults.  I had one mother complain to me that her 15 year old son got in trouble for arguing with the discipline office at school after he was caught doing something against school policy.  (He knew it was against school policy.)  The mom said that the school should realize that he had Asperger’s, (they knew and were already giving him accommodations), and that people with Asperger’s argue a lot so he shouldn’t have consequences for arguing.  The kid was 6’ tall and going to be walking around the community by himself within a year or two.  If he didn’t learn how to act around authority figures and that there are consequences if you don’t act appropriately, he could get into an awful lot of trouble with the police.  Our kids don’t have a big “A” tattooed on their forehead.  They look like everyone else and their disabilities often aren’t apparent to police.  Instead they look like they’re belligerent or on drugs.  It won’t prove to be much comfort if the police apologize after bonking our kid on the head because when the officer told him to sit down and be quiet, he got in the officer’s face and the officer felt threatened.  That happens all the time, too. We have a women in our town whose main focus is advocating for kids with disabilities who have had trouble with the legal system, often due to their disabilities.

Let me say right now that my blog is not going to appeal to all readers.  I am totally fine with that.  If people are looking for someplace that’s going to tell them how terrible the world is to them; what precious angels their children are and that they never, ever do any wrong; that everything bad that happens is someone else’s fault; that our kids don’t have to change and that society is wrong if it doesn’t learn to accommodate their every difficulty; or that society will always take care of their child – my blog is not the right place to find it.  There are a lot of other blogs on line that you would get a lot more out of than you would mine.

If you’re looking for a blog that talks realistically about the challenges we and our kids face; points out pitfalls to our parenting styles and ways we can improve; lets you know that you’re not alone; offers strategies other than “go sue everyone because they could fix your kid if they really tried but they just don’t want to”; and shares the experience of someone who has watched over a hundred of our kids grow up to be functional adults and has sat in more courtrooms, hospitals, education policy meetings and IEPs than she ever wanted to, then this blog may be a good fit.  Or it may not.  Anyone who has read this blog for a while knows that I’m not all sugar and rainbows.  I firmly believe in our kids’ potential and capabilities, and so I have high expectations for them and for us parents.  And while I am not always right, I am always opinionated.

Educators who want to learn how to work with our kids have a lot of resources available to them.  We parents don’t.  We have to find our information on our own.  If this blog helps you help your family, then by all means, read it and pass it on to a friend.  If it doesn’t, find one that does.  There are a lot of fantastic blogs out there that take a very different approach than mine.  Find them.

As to whether or not I’m ever at fault, the answer is a resounding yes.  Often.  There isn’t a struggle I’ve talked about on my blog that I haven’t personally been through.  There are times I should have been more aware of what was going on at my child’s school and insisted on a different placement, different teacher, or more help for him.  There are times I should have been harder on him or cut him more slack.  I’ve put him in situations he wasn’t ready for and I’ve held him back when I should have pushed him forward.  Sometimes I’ve ignored the needs of one of my children too much in order to focus on another who was in crisis.  I should have stuck out the social rejection I felt he experienced (that in retrospect I know he didn’t) in church and scouting and kept him in both programs.  I should have accepted him for who he was and enjoyed his exuberant (if slightly odd) personality much sooner instead of always trying to “fix” him.  I shouldn’t have let him climb the playground equipment that I was sure he would jump off of even though all the other kids didn’t and all the other mommies said I was being too nervous.  (He did jump, but he survived unscathed.)  I should have started him on medication sooner.  There are a lot of times I should have asked him why he did something before I assumed I knew why and disciplined him in an non-useful way.  I should have read more books and gone to more conferences and listened a lot more to some of the excellent advice I was given.  I should have let him go camping with my sister, who while not knowing much about kids with Asperger’s, is an RN and could provide almost any first aid he might have ended up needing.  I can think of a lot more, but I’m sure you all get the point.  If I felt I was perfect I would not feel the need to write this blog.

And to the mom who told me that my child obviously never had significant difficulties so I simply cannot understand what other parents are going through and that therefore my opinions are in no way valid, let me point out that my kid used to spit on people at school, too.  He didn’t spit on the teacher though; he spit on other kids.  He kicked the teacher.  He threw tantrums eight times a day, routinely escaped the classroom and had to be tracked down, threw pencils at people, hit a kid, spent eight months screaming in the classroom while we tried every therapy and made every environmental and medication change we could think of.  He threw yogurt at a girl who was trying to help him.  He licked a boy scout (on the shoulder.  I still have no idea why he did that one.)  We’ve had police helicopters out looking for him, we’ve had fire trucks come to school because of him, and we’ve spent time in the ER getting stitches.  Yeah – I think I might have a little understanding of what life’s like when someone in your house has Asperger’s.

I will never tell anyone that helping our children learn how to modify their behavior is easy.  It’s not.  It doesn’t happen quickly either.  (It took us six months to teach my son not to spit on people, and I spent a lot of that time in tears because I was afraid we would never succeed.)  Nor will we be able to teach every child to control every behavior.  But that is no excuse for us all (parents and teachers alike) to not try everything we can to help our kids have every chance they can for a good life as an adult.  “Because it’s hard” is not good enough.

– Cassie

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