Monthly Archives: October 2013

Last Week

I’ve been trying to write a post a week. Shouldn’t be too hard right? With an 8 month old baby, a 10 year old competitive dancer and a 12 year old aspie, life is way too busy to work full time or even take a regular moment to indulge in writing.

And last week was particularly bad. Our older son, the one with Asperger’s had a rough week. Which meant we had a rough week. If you have a child with challenges you get it. If you don’t, then I don’t have the energy to explain it right now. I was going to apologize for that, but that is my Canadian politeness coming through, because it’s merely the truth.

This last year has been heading downhill for him, but for some reason last week was just plain awful. Something triggered him (I don’t know what yet) and he had the biggest meltdown that he’s had in five years.

He was hurting himself, hurting others and putting himself in danger. In other words everything a mother of a child with special needs dreads happening yet again.

Last time this happened, five years ago, he lost most of the school year in terms of actually learning anything, I lived pretty much at the school, and I struggled in vain to find someone to help us figure out what would help. Eventually I took a course run by Autism Ontario that I had to drive downtown to weekly for a couple of months. It was a godsend, but says something about the pathetic lack of services available for families with a child with autism.

I’m hoping with the DSM change that we will be able to access help this time around, but so far I’m not encouraged. I called the local crisis line and asked for a referral. The best they could do was say that someone would call back on Monday–three days later. The pediatrician’s office was worse, I don’t expect a call until at least five days after I left them a message. sigh.

The “system” abandoning a family in need yet again only contributes to the stress levels. It’s why I didn’t get my post out last week. Why I feel exhausted. Why I have no interest in celebrating my birthday this week. Why I haven’t written. Why so many other things didn’t get done.

So I sit and wait for the phone to ring. Hopefully it’s not the school and is someone offering help. But I won’t hold my breath.

Some people will never get it

Recently, a blog I follow posted a wonderful response to a letter posted on Age of Autism. The man who had written was so upset at his brother-in-law’s behaviour that he couldn’t see that he needed to learn how to respond appropriately. Her lovely post can be found here

I felt the need to share my story in the comments, then realized I should be blogging about it and sharing it. It isn’t the same story, but is about the anger and hatred that can rear its ugly head after an incident with a child with autism. In this case, the woman’s child was attacked by a child with special needs at her school and was scared to go back. She posted it on Facebook and I tried to give her some words to use to rationally talk to the principal about it, but sadly she was more of the mind of some of her friends. I’ve included a copy of their comments below.

The original post was on Dec 14, 2011.

[a woman I vaguely knew in high school]
Is very upset with the Principal at the girls school. There was an incident today where a boy grabbed T around the neck and lifted her off the ground. She’s ok but was very frightened. The boy was removed from the class fir the rest of the day and suspended for a few days. The principal’s response was that he is a special kid and deserves to be included in a regular classroom. She also said that he might not get all the gifts for Christmas that he wants so he might be frustrated. Is she kidding me… Cuz the kid doesn’t get presents that excuses him grabbing my daughter and choking her…. I know I couldn’t believe that she [the principal] was defending this kids actions. He is a known trouble maker and has an EA just to keep him in line. T doesn’t want to go back to class because she’s nervous he will come back at her. I am in total shock over this whole thing.

my response after some of the other parent’s comments was:
As a parent of a child with needs and support, I have been on the other side of this one. If his parents are honest about their child and his actions, then they will truly feel for you. School and provincial/federal privacy policies prevent releasing names of children/parents to each other. We had even tried to offer our contact info so that we could chat with the other parents. The principal sounds to me like he was trying to explain (though not really doing a good job) It is hard for both sides. It is awful that it had to happen to your daughter. Tomorrow, I would suggest speaking with the principal again and expressing how scared your daughter is. It’s important that they know this. You can also ask if there is a safety plan in place for the other child. If so, was it followed? Will it be modified after this incident? If not, when will one be generated? Talking with your daughter about children who have issues including lack of impulse control and anger issues as well as something else (perhaps autism or ADHD?) can help your daughter understand some of what happened. I am happy to give you further information/language if you would like it. It was a scary thing that happened, but to take the fear out of it, please talk to your daughter and empower her with information.

But then there were more comments from parents whom I didn’t know:

[mom #1]
been there for SURE and it’s disgusting the concessions they make for these kids in class and out, but what do you expect when you’re in the “Public School Board” ! As a parent of 3 girls in the Public School Board I have to say the only way to deal is to follow the saying… “squeaky wheel gets the oil”

[mom #2]
That is very poor on the part of the school. Ur daughter was assaulted and u could take legal action to ensure her safety going forward.

[mom #3]
I would call the Board Office and file an official complaint. Special needs or not, if the kid is a danger he should not be in a regular classroom!

[mom #4]
I get the ‘special’ children, but the other children in the class should not have to suffer and/or be in fear of another kid. Not fair. If it was T that did this TO a special needs kid, things would have turned out MUCH different… Thats disgusting…if hes attacked abother kid b/f he shouldnt be in the reg class anymore…if hes done it b/f he will do it again more than likely. I agree that special needs kids should get a chance to be in a reg class…but it has to end somewhere if they become violent.

[mom #5]
KICK HIM WHERE IT COUNT T….(sorry)….that is upsetting. So…obviously this kid has had other incidents? Where does it stop? Are you privileged to know what SPECIAL needs this kid has?

[mom #6]
! IMO the other youth’s rights ended the moment he grabbed Taylor. There is no excuse for violent acts.

There were more, but this is about all I can stomach right now. Almost two years later and I still feel a cross between indignant anger and sadness. I’m sad that so many people have no understanding of special needs, and worse, don’t wish to.

In this case, the child was suspended for three days-which in my experience is very harsh for a special needs child.

A friend of mine, who is an autism specialist, posted a very thought-provoking response:
My two cents…because I feel very strongly about the astounding comments here. First, by putting quotations or caps on “special” or referring to “those children”, you may as well be looking down and shaking your head in disdain. All children are worthy of respect. Second, there is no indication of a pattern of aggression. Just once. It doesn’t sound like this is a ‘dangerous’ school, especially since there were adults there immediately to ensure safety. As you said, T is fine. Third, everyone has a right to an education and appropriate support. Imagine that the victim of aggression were to be placed in a segregated classroom to protect their safety?. Fourth, LEGAL action??? This is a child. Clearly the zero tolerance policy IS in effect- he was suspended. (though getting out of school may be more reinforcing than punishing but that’s another issue). I’m not convinced that having the child’s parents pay you for pain and suffering will help rectify the situation for the children.

There are children out there committing suicide because they are seen as eccentric or because their behaviour is different from others. Children that readily learn how to act appropriately if simply accepted and taught, not discussed as if they were animals on Facebook (which is verbal aggression and has been prosecuted in other instances). This can lead to increased aggression, not decreased. Bullying, cyber bullying and intolerance are the cause of this. It makes me so sad. What would your response be if yours was the child who lost control at school but hadn’t meant to? If you dont know, please talk to parents who do. If you truly want to get something positive out of this, I can send you more info, and I see it’s been offered by a parent as well. Let me know- I’d be happy to share or give you ideas on how this can be made into a positive learning experience for all. We need to model positive ways of dealing with a problem rather than lashing out.
Get to know this child. My guess is that he had no intention of harming anyone. Perhaps he was simply trying to connect to someone but doesn’t know how. My guess is also that the school is working on it. They don’t take things lightly. Talk to the school about it if you are concerned.
But I am asking each of you to please consider how you are talking and thinking about a child who probably was simply trying to communicate or make a friend. Probably a pretty amazing kid who just might feel like the whole world is against him. Please consider this.
While I don’t know the children in question, I strongly believe that silence is acceptance and I don’t accept that children should be pointed at like this on Facebook.

Very well said my friend.

I never thought that I would see the day when adults my age were publicly posting nasty things about “these kids” and how they shouldn’t be integrated. I mean really, isn’t that attitude so 40 or 50 years ago?

I feel truly sorry for their children. Those poor children are being raised by hateful, compassionate-less parents who have no interest in learning about something beyond their little world.

Theirs are the children who will be bullies. Their parents are, so it will likely, sadly, only be the very bravest of them that will break free of their parents behaviour.

I can’t tell you the number of times I’ve heard the expression that we are all given only what we can handle (or rise up to handle). It’s very clear to me that these people have ordinary lives and are not being touched by the extraordinary.

I’m blessed that my life is.

Yes I am a mom of a boy with Asperger’s.

Yes it is incredibly challenging sometimes. But it is also rewarding. Our son thinks of ideas and observes things that neither of us would have come up with. And he’s funny. And one day, when he finds a partner who is capable of seeing past his quirks, will be an amazing partner and parent. Our daughter, through dealing with her brother and learning from us, is an incredibly compassionate person. She sees past people’s issues and handles situations in an incredibly mature manner.

They are my children and I am proud to be their mom.

That mom on Facebook and her friends? She couldn’t handle my rational comments (or those of two others) and un-friended me. That’s ok. I would have done the same for her. I get that she was upset. She had every right to want to protect her daughter. What upset me was that despite offers to help her get the answers and safety that she needed, she had no desire to do so. All she and her friends wanted was retaliation and retribution. This is a CHILD we are talking about. No adult has the right to retaliate against a child. Ever.

If dealing with a special needs child is beyond your experience or skill set then I’m always happy to provide information and advice at any point to anyone, or to help point you to a professional. I get that you might not have experience to draw from. But please, please don’t be vicious about a child who needs our help.

Wisdom of a child

I try to be a good mom, walking my kids to and from school each day. This is not always an easy task… if we lived 0.4 km farther away from the school, then the kids would be entitled to take a school bus. But the walk, even if it is uphill (no not both ways 🙂 is good for all of us, especially my hips.

It also has the unexpected side effect of giving us a great opportunity to talk. Sometimes it’s about the trees and squirrels and what happens in each season to them, sometimes it’s about what happened in class, and other times it becomes a fascinating conversation in philosophy.

Take last week for example. 10 year old K wanted to know why I wouldn’t let them walk by themselves to school. Good point, and I talked of “bad people” and although I don’t forsee anything happening in our neighbourhood, I still prefer to know they got to school safely.

Somehow this morphed into a fascinating talk about what would happen if bad people didn’t exist. After exploring various sides of this, we decided that as awful as bad people are, they are necessary for our continued evolution and growth as a race. That without our reactions to their bad actions that we would have no desire or drive to make things better. Pretty deep thoughts for before 9am.

Then out of nowhere, my daughter started talking about the butterfly effect. (did I mention that she’s 10?! Where on earth did she learn about that?!) So we chatted about that for a while and how everyone’s actions can impact someone else and we may not even ever know how.

And then we got to the school, and I did our little fistbump routine (fistbump for hug, hand clap for kiss, and hand to heart for love)

And went on with our day.