These posts are not meant as advice; just Michelle thinking out loud

[msagara]

When I started writing these posts well over a year ago, I had two things in mind.

First, I wanted to write about how my ASD son and elementary school. I wanted to talk about how the environment was safe, and the efforts required to make it safe for him. The efforts are not small, and they're not about punishment. If the environment does not feel safe for almost all of the children in it - including those who bully - it frequently fails.

It's vastly easier to make the household a safe environment. It involves far fewer people, and far fewer cultural contexts.

Second, I wanted to write about my own experiences with an ASD child, because I know a lot of people out there are facing some of the same difficulties, and they often feel isolated. By putting these posts up, I wanted to let people know, for a few minutes at a time, that they were not alone.

What I did not expect was that people who don't have - and don't want - children would find them interesting. I did not expect that people who are like my son would find them interesting; that these articles - which are written from my perspective as a parent - would speak to their experiences as someone on the spectrum. As all unexpected gifts, this makes me happy.

However: I want to make a couple of things clear.

Advice about parenting is tricky. In some ways it's like advice about writing. No two children are alike. No two books are alike. The process to raise a child or write a book are both therefore unique. Is there overlap? Yes, because we're all people. We have a lot in common, especially when it comes to our fears and worries.

There is nothing more irritating than the theoretically well-meaning person who walks up to you out of the blue to give you advice on parenting--frequently because you are, in their opinion, doing it wrong. Reading books on parenting isn't the same: that's advice that you've sought out, and the entire experience is between you and the page; you can look for the elements that resonate with your experiences, and you can pick and choose the elements that work for you. It's the same with writing advice: you can pick and choose.

The internet walks a line between these two things: random advice given by strangers, and the advice you seek when you go looking for it.

In the past week, I've seen people beating themselves up because they've come across a few 'how-to-write' advice posts. These posts are great and they have a lot of information in them that's entirely individual - but writers see them and feel deflated. They feel unproductive, or lazy, or incompetent. Which is pretty unhelpful, all round.

In the past several years, I've seen similar - but more intense - reactions to parenting posts and how-tos.

I wanted to make clear, then, that these posts are not meant to be advice in the traditional sense. You are not me, and the things that you will find sensible and comfortable will of course be coming out of your own space and your own experience. They will come out of your house, your work, your extended family and your support network - or your lack of support network.

Which is to say: Your son is not my son and you are not me. The very last thing I want as a take-away from these posts is to make you somehow feel like you're doing it wrong, or that I'm criticizing you. It's hard enough to parent on some days without also beating yourself up; we all have days where we beat ourselves up over things we think, in retrospect, we should have done differently. I don’t want to inadvertently become one of the clubs by which other parents do this to themselves.

Also: if anyone has any questions about anything I've written, ask them here, and I'll try to answer them. If you don't want to ask them with identifiers, ask them anonymously, or ask them in email.

Comments

[elialshadowpine.livejournal.com]

Thank you again for these, btw. I am personally childfree with no desire to have kids of my own, but there are a lot of things that you have talked about with your son that I have seen in myself and my sister (now that I have insurance again, going to be looking at seeing a psych qualified to evaluate for ASD).

While I have definitely read parents talking about their kid's ASD that came across preaching or trying to tell people how they should be doing things, I don't think I ever got that impression from anything that you have said. You've always gone out of your way to regularly add the disclaimer that this is your son, and not all ASD kids are the same. (Lord, just the variation between myself and my sister was huge.)

I understand why you want to clarify, though, and appreciate that you did. But, in case you were worried that you might be coming off as preachy... I don't think you were :)

[msagara.livejournal.com]

But, in case you were worried that you might be coming off as preachy... I don't think you were :)

It’s something I worry about sometimes because when I’m over-focused I speak very definitely, so thank you for this.

[heinous_bitca.livejournal.com]

What Nonny said.

I'm also childfree (and too old to start now), but my nephew is 5 going on 6 and is in the autism spectrum, so I've become more aware of the difficulties he's going to face. Reading your posts have made me more aware of what my brother-in-law and sister-in-law are having to deal with on a regular basis with their son.

I've also passed along your posts to a coworker, since we work in education reform and she deals specifically with school climate issues.

[thebluerose.livejournal.com]

I have at least one friend who is ASD, so I am another non parent and deliberately childfree adult who also found these posts not just interesting, but fascinating.

Personally, I think if everyone had to parent in the ways you describe, the resulting outcomes would overall be a lot better, I say this in relation to how your circumstances with your son forced you to live by all the same rules, and not "because I said so". I think thats a really powerful thing to learn growing up.

[lily-bless-her.livejournal.com]

I have enjoyed your posts immensely. As you say parenting is a difficult thing and very personal! I have found being the single parent of two children with learning difficulties very isolating, particularly living in a small rural town (less than 3000 people). People don't accept children who are different in a community like this. People always have an opinion - I have been told many times that my eldest son and heir is 'ignorant', just because he doesn't conform with society's norms. Social niceties, are just niceties. My son doesn't see the point and doesn't understand them. Acceptance appears to be much easier if your child has a disability that is visual.I am very proud of my sons and love them to bits.

[msagara.livejournal.com]

have found being the single parent of two children with learning difficulties very isolating

I think it was easier for me because I live in Toronto, which is not a small community, and there were a lot of things I could do that took me out of the house.

The Science Centre, for instance, expects all of their visitors to touch things or climb things or run through things - so taking my 3 year old there was only an exercise in endurance, and not a guarantee that other people would be cursing my parenting for the entire duration. He was always delighted to go there because he really could touch everything.

[mtlawson.livejournal.com]

The most valuable thing I've gotten out of your posts, Michelle, is the perspective.

I know you're not me, and neither are you my wife, but it does help to see how someone else does it, and essentially lays bare part of their life. It's not an easy thing to do, and I realize that most people wouldn't find these articles interesting, but I find the value in the humanity inside. The love for your family is evident throughout all of these posts, and that is the true value here.

If you're still willing to share, I'm willing to read. It also doesn't have to be strictly on ASD, either.

[http://users.livejournal.com/la_marquise_de_/]

I, for one, learn from observing and listening to others -- I belong to that group who goes and looks for a book for answers. So I appreciate these posts because they offer an glimpse into other experiences, other ways of being and doing.
So, thank you.

[janni.livejournal.com]

I think the thing is ... unlike some of those how-to-write articles ... you've never presented your advice as universal or in any way with the implication that if only people try, your techniques will work for them. It's always been clear, to me at least, that you're posting about your family and what's worked in the context of same, and that you actively know others may be different.

[msagara.livejournal.com]

It's always been clear, to me at least, that you're posting about your family and what's worked in the context of same, and that you actively know others may be different.

Good. What I really don’t want is for people to read these and - as I said above - use them as a club to wield against themselves.

[tiamat1972.livejournal.com]

My children don't have ASD, they are ADHD, but there is a lot of truth in your advice. The big thing in ADHD is the controversy over giving your children medication. I won't go into it because it's as dumb and messy and overbearing as you can imagine but it comes down to some of the same points you make. Every child is different, every family is different and what works for one isn't necessarily a solution for all.

[msagara.livejournal.com]

I won't go into it because it's as dumb and messy and overbearing as you can imagine but it comes down to some of the same points you make. Every child is different, every family is different and what works for one isn't necessarily a solution for all.

I will tell you a possibly funny story about medication and children.

The woman we went to see for our son’s psych assessment was a tiny, ancient woman. Our pediatrician had warned us that many, many parents found her difficult to deal with. We didn’t. She seemed strict and no-nonsense, but she was good with my son. We went for six consecutive weeks.

At the end of this, she told us that she thought we were doing as good a job as we could (which made me happy) and that we should consider Ritalin.

We had not expected this. Ritalin for children under a certain age can be tricky. My son, by this point, had six weeks of school left, and the trial period for Ritalin is eight weeks. Most of the side-effects of the medication lessen over time; anything less than that is not considered conclusive.

So.

I went home. My mother in law was a pharmacist, and she quietly handed my husband two inches worth of reports on Ritalin usage; she of course said nothing critical. My son’s godfather indicated that he would never speak to us again if we tried this.

I have no trouble with medication. My only twitch - and it is that - is the whole informed consent thing. Antibiotics, no. Long term drugs, yes. And of course, he was six. There is no definition of ‘informed consent’ that can be applied to a six year old, imnsho.

So, after a lot of discussion back and forth with teachers and each other, we decided not to do this. Our pediatrican said: “You don’t understand. Dr. Haka sees up to 1500 children a year. They go to her because they’re having trouble and they want her to medicate their children. Maybe in three or four cases a year, she will agree to do this.”

“What does she do all the other times?”

“She tells the parents it’s their fault because they’re doing such a lousy job.”

And...boy did she tell us we were being lousy parents when we decided not to try the Ritalin. She was enraged. She said, “If your child couldn’t see the blackboard, would you decide he didn’t need glasses?” She was beyond furious. I was surprised when she agreed to write the report the school required anyway.

I do not know if we did the right thing. I am aware that there is so much emotional baggage tied up in medication, and that I am not immune to it. My son did cope with school, he did manage - but I often ask myself if he could have done better or if he would have had an easier time.

We did broach the subject with him again when he was older (or rather, he asked about it because of the Order of the Stick's forums). He did consider it for an afternoon, and he decided that he was not - at this point - interested in it, but maybe later.

[tiamat1972.livejournal.com]

I don't agree with that doctor's reaction. Ritalin isn't for everyone and it certainly doesn't always work. There are several similar drugs on the market and finding which works best for a child is trial and error.

Perhaps it would have done something to help your son, perhaps not. But it is your call to make. My pediatrician (who is one of the best doctors I've ever met) sums it up as "quality of life". He won't prescribe ADHD medication unless he's convinced it will improve the child's and family's lives. In that order. But he wouldn't criticize us if we had decided not to try the medication. It is something that can help, but it isn't a "cure". With my children, it helps them concentrate, gives them enough of an attention span to listen and some memory to retain what you've told them. They still retain all the other behaviors that mark ADHD. Those they need to learn to manage themselves or I need to be patient and remember they don't think along the same lines as I do.

On the flipside, these are the only drugs I've ever seen that work immediately. I noticed results within an hour of them first trying it.

[msagara.livejournal.com]

I don't agree with that doctor's reaction.

I admit it was slightly shocking, but, well. She did not prescribe as a matter of course; she didn’t prescribe as a matter of convenience, and if she was prescribing, she felt it was necessary. It was clear to us that she felt we were materially harming our son; that we were making his life far more difficult and more miserable than it had to be.

Because I could see the why of her outrage, I didn’t find it offensive, if that makes sense.

My son asked because when he found the Giants in the Playground - a rigidly moderated board - he read everything, and he came across a Ritalin thread. And in it, there were all kinds of horror stories - of children who had been put on Ritalin, but also, one lone furious voice of a young man who had not. He went on Ritalin in his first or second year of college and he had not spoken to his parents after the first month, I think. They had refused to put him on Ritalin, and as a young man he found it made everything easier. He could interact. He could focus. He could think clearly for the first time in his life.

He bitterly resented his parents “religious” adherence to drug-free life because he knew that his entire childhood would have been totally different had he been on Ritalin for most of it. So: he wasn’t speaking to them.

Yes, there were children who were put on Ritalin that found it horrible; they found it personality suppressing and stupefying - but you hear a lot about those things; you seldom hear about the young man who wasn’t.

We did discuss Ritalin again because by this point, the oldest was older, and old enough, IMHO. But he weighed things for himself and decided against.

[reneekytokorpi.livejournal.com]

Part of what makes your posts interesting for me is how insightful you are. You make me think and consider and look at things a different way.

The other part is that the way you approach things gives me and my family ideas for ways to cope with my brother's developmental disabilities. It isn't a perfect fit, but sometimes trying something different helps. :)