the network for radical unschooling families
Hi, I'm new to this forum. I've been unschooling my kids for years and have recently realized that they both have Asperger's Syndrome (AS). It doesn't change who they are, or who they have always been, but it does give me a lot of answers regarding certain behavioural challenges they've had over the years.
In searching around for resources on AS I have found myself lost in the unpleasant "foreign culture" of mainstream parenting. When I ask how to support my son, who may have a complete meltdown in the store if he can't have gummy bears, I'm told to start issuing conequences, punishments, or use a reward system. First of all, none of things are consistent with my values - they seem so very wrong. Second, my children have never responded positively to attempts at manipulation and coercion and all I've read about Aspie's suggests that they really aren't able to appreciate the whole concept anyways (in other words, they'll say they understand the consequences, but in the moment cannot access that information or make a decision based on that information). So I fail to see why people are suggesting this in the first place.
Anyways, I'm really hoping I can connect with some other parents of Aspie kids here. I really need to find a community that knows where I'm coming from and what my values are, and will give me helpful suggestions that don't include coercive or manipulative parenting. I'm feeling very alone.
Thanks for listening!
I don't parent a kid with aspergers but I have worked in schools with kids with that label. I have studied it some and have done daycare for a couple kids with it having the child in my home for about 45 hours a week for over 3 years.
The aspergers label wouldn't change the unschooling advice much. Unschooling honors each individual child's being. So you could ask any of your questions here and get stuff you could work with. About the gummy bear melt down....get the gummy bears next time, go at a time when your child is less likely to have a melt down (well rested, fed, wanting to be there) Maybe go to the store without your child or bring a snack along or offer a piece of gum as a sweet chewy alternative or not stay as long at the store. Are there sensory integration issues? Too many bright lights, random sounds, people approaching your child. Maybe headphones with the child's favorite songs, sunglasses, deep pressure or chances to expel energy first
I think when you don't main stream parent there are times when you feel very alone.That's what makes these unschooling boards invaluable. I think the unschooling community honors and celebrates each child's individuality. I'm sure others here can give you links to plenty of sites discussing the problem with labeling kids.
Thanks for your reply. I understand what you are saying, but it doesn't seem to be addressing the underlying problem. I've been instituting the advice you listed for many years, and while it has helped us avoid the meltdowns, they aren't going away and he's not learning how to deal with them. What I'm looking for is advice on what the underlying issue is so that I can support him in a way that is helpful for him. I know that when we start therapy some of these questions may be answered, but from what I've seen so far it's going to be a lot of advice that I simply can't use (like punishing, etc).
It's one thing to support a child through a normal developmental stage until he's mature enough that the problem is no longer an issue. It's another thing when the child is not going to grow out of it, and instead needs help dealing with it.
I'm not really sure what I'm asking, to be honest with you, I just want to be in a supportive community that understands the specific issues we deal with but also understands our values and lifestyle. I'm feeling like I've gotten lost in mainstream parenting land and I really want to be home again. Does that make sense?
Sorry! :-) He is 6.5 years old.
It may be that Kaed Family is right, and that really we shouldn't be treating this as anything different. I've always known my kids have their unique challenges and quirky personalities, and I've never been one for labels. In this case the value of finding the label was being able to explain behaviours that had always stumped me.
I would just really love to touch base with anybody unschooling Aspies to find out if and how things are different, or maybe give me some new strategy ideas. Or maybe just reassure me to keep doing what we've been doing! :-)
Among radical unschoolers you may find that asking for "parents of x disordered children" doesn't get you as much response as you'd expect - but if you ask about specific issues, parents whose children you didn't know/expect had any issues whatsoever will chime in and say "oh, yeah, btdt, here are some ideas". Part of that is that a certain percentage of unschoolers avoid getting diagnoses or applying lables to kids, but another part is the diagnoses themselves aren't good "pictures" of your child - there's a broad range of possible characteristics lumped together in every diagnosis, and other issues will fall outside the box.
my son, who may have a complete meltdown in the store if he can't have gummy bears
It can help to look at other environmental factors. Mo will "freeze up" in a store if she can't get what she wants if she's overwhelmed already - the lights or the level of sound are big factors. Ray would melt down if he couldn't Find things - but finding an empty peg he'd be okay. It was more the panic of having too much stimulation in terms of the search.
But it could just as well be a matter of saying "oh, no gummy bears - we'll get some across the street" end of drama.
my children have never responded positively to attempts at manipulation and coercion and all I've read about Aspie's suggests that they really aren't able to appreciate the whole concept anyways (in other words, they'll say they understand the consequences, but in the moment cannot access that information or make a decision based on that information).
That's pretty common for a Lot of kids and adults - diagnosis or not. Fortunately unschooling doesn't depend on manipulation or coercion in the sense that most parents mean. It's fairly common for unschooling kids to turn down "bribes" from friends and extended family, for instance, if they aren't interested in whatever else is being offered, as in "I'll give you some ice cream if you rake the yard" "I'm not really hungry right now".
What I'm looking for is advice on what the underlying issue is so that I can support him in a way that is helpful for him...
I'm coming back to this.
The trouble is, "Aspergers" isn't necessarily the underlying issue - although sometimes having a useful diagnosis lets you find the underlying issue or issues. That can be one of the problems with therapy, if the diagnosis is seen as the root problem - a dianosis is a grouping of multiple potenial traits.
Six isn't "too old" to be still falling apart in moments of stress - a fairly "average" age for high intensity kids to start settling down a little is closer to 8. There's a developmantal shift involved and it takes place around the time kids lose that sort of ubiquitous "little kid" appearance. So in that sense, your guy is still right in the "normal" range ;)
It can help to shift your perspective from "has a lot of meltdowns" to "is a very sensitive person". That kind of change in how you lable your child in your thoughts can make a biiiiig difference to how you respond. It can be easier to be gentle and sure when you know you're dealing with a sensitive person than if you're tensed up against the king of meltdowns, if you see what I mean? The more you can do to see your son in a positive light, the better your chance of supporting him in being his best self. It could help to keep a journal of good moments so that you can see what sorts of settings and happenings set your son up to be easy and mellow. That's important information! If you've been focusing on "avoiding meltdowns" you may have been missing a whooooole lot of valuable data.
I appreciate much of what you said, thank you for reaffirming these things in my mind.
I'm not really looking for a specific label - it may be that he doesn't have Asperger's but a related thing. His meltdowns aren't the real issue for us - as you said he is a sensitive child and he is still young. The real issue his physical aggression. He hurts other kids sometimes, pretty badly in some cases. He cannot be left alone (or even "unshadowed") with toddlers, for example. His "aggression" for lack of a better word (because it's not always associated with anger or any ill will), is something we've been dealing with since he was 2.5. He's gotten much better over the years, but it is still a heavy burden to deal with when socializing with other children.
I figured out one aspect of his "attacks" relates to anger management issues. We've worked on that for a long time and he is making improvements, but the other aspect is that he is often way too rough in play, and makes inappropriate tackles and shoving, especially to very small children. He does not appear to understand physical boundaries. I had never realized until I started thinking about autism that this issue could stem from social disabilities. So it has been helpful in that sense.
With my daughter, her issue was flying off into very strong "rages", usually directed at other children who she felt had "slighted" her. I had never understood where this deep, raging anger would come from as she is normally a happy child. Again, after realizing Asperger's fit her in so many ways, it helped me to see that her anger comes from not understanding social situations and getting her feelings hurt due to misunderstandings. Apparently it is common for Aspie kids to have this "revenge" thing going on in such situations. For her there is likely not too much more to do then what we have been doing all along, but now that I understand what underlies the rage we can tackle it on that level.
You are right that Asperger's (or whatever) isn't the issue. I'm looking beyond that to the emotional and cognitive processes that underlie their "challenges". As a neurotypical person it never occurred to me to look at areas that, for most people (and myself) are intuitive and not something we give much conscious thought to. With what I know now I realize I had been missing the real underlying causes of their behaviour, and now we can work on that. Talking with you guys about this has reaffirmed my commitment to gentle, consensual parenting even in the light of challenges that are beyond my own experience and understanding. I'm grateful for that!
The real issue his physical aggression. He hurts other kids sometimes, pretty badly in some cases. He cannot be left alone (or even "unshadowed") with toddlers, for example. His "aggression" for lack of a better word (because it's not always associated with anger or any ill will), is something we've been dealing with since he was 2.5. He's gotten much better over the years, but it is still a heavy burden to deal with when socializing with other children.
Ah! Now, see, that's an issue that comes up regularly in unschooling discussions and some of what you're describing is developmental - he's not ready to understand certain kinds of social cues, so putting him in situations where he has to do that is like sitting him in the seat of a car and saying "have at it, don't hit anything". Not so good. He needs time for his social development to catch up to his physical development - and often that's around age 8, although just like anything else there's plenty of individual variability. Lots of kids seem to grow out of this - so long as they aren't set up to see themselves as permanently broken (and that's where a diagnosis can bite you in the butt).
When Ray was younger it helped to keep him away from other kids for the most part. We learned to plan one-on-one dates with kids who were older than him, but more often with teens and adults. The main thing was that the teen or adult needed to know their job was to be Ray's buddy, not his guide or supervisor. They were there to play. In settings where there was going to be other kids, close in age to Ray, he Especially needed a buddy - someone older who was there to play specifically with Ray. If no-one was available and his dad and I weren't up for it, we didn't go. It wasn't worth it as it only set everyone up to have a bad, bad time.
he is often way too rough in play, and makes inappropriate tackles and shoving
Be sure anyone who plays with him expects rough play. Be sure to wrestle and play rough with him, yourself, but do set very very clear boundaries. Ray needed help transitioning from wound up to a lower level of activity - he needed the level of engagement to stay the same during the transition, that was the big thing. Calming down wasn't time for the adult to pull back and take a break, if anything it was better to be even more focused and engaged with Ray and his needs.
At the same time, look for all the ways you can find to get your guy physical activity. If he's shoving and tackling, look for anything that uses the big muscles of the arms and back. Climbing is good, also doing things that let him swing his arms. If he seems to like impact, look for ways for him to crash his whole body into things - water is good for that, but swinging on ropes or zip lines can give that same sense of momentum followed by a big change in momentum. Deep pressure might be good - massage or putting a bunch of pillows on top of him and sitting on them (communication is important - this is Fun, not punishment) or rolling him back and forth wrapped in a blanket.
Perhaps big breath activities would be good, too - blowing up balloons and blowing bubbles (we got a digeridoo for Ray it was Great! not nearly as screechy as a kazoo or harmonica). I'll include a link to a page of physical stuff to try, but a good book to look at is The Out of Sync Child. That's a book I totally recommend to anyone with an active or more intense kid because it has fantastic lists of different kinds of physical activities and they're grouped by similar needs.
I've been taking a few days to let this information percolate in my mind. I suppose what I'm stuck in the middle of right now is a philosophical struggle in my own mind. I'm wondering, as an unschooler, what to do with this new information I have regarding my children's behaviours and the struggles they face in certain situations.
If I understand the message I'm getting here so far, it is that I should just keep doing what I've been doing all along. For example, we don't go to festivals and other places where there will be lots of children. We try to tailor our social situations to those that best set up the kids for success. If DD has one of her "rages" we find a quiet place for her to chill out for a while. Etc. I'm hearing that some people don't feel a diagnosis adds anything useful, since it wouldn't change how they deal with their child's particular issues.
As an unschooler I've always believed that my children will eventually learn what they need to know to thrive, and my job is simply to support them in their journey, provide what assistance I can, and have faith that they will read, play independently, write, sleep away from home, make good food choices, and many other things when they are ready. But I've also believed all this based on the assumption that there was nothing fundamentally different about their brains, and that they could be counted on to achieve all the necessary milestones, albeit perhaps earlier or later than other kids do.
But what if having Asperger's Syndrome means they can't? I've been assuming for years that when my son is mature enough he will realize that hitting people when he's angry doesn't help the situation, and that he'll have learned the lessons of problem-solving we've been modelling and drumming into him since he was tiny. But now I'm not so sure. Because it seems he's lacking certain fundamental abilites that me (and most people) take for granted. Such as being able to read intention, to take in a complex array of verbal and non-verbal information and make a coherent picture out of it, or to be able to feel emotions in increments rather than being either calm or completely pissed off. If the assumption of abilities that arise in the course of normal development are false in the case of one's child, can one simply have faith that providing support and micromanaging potentially explosive situations is all that's needed?
I've been supporting my son with his "aggression" issues for years, and I can handle having to shadow him at the playground for a few more years if that's what it takes. But what if he doesn't outgrow it? What if I end up with a 14 year old who, when he loses his temper, lashes out and hurts people? I won't be around all the time like I am now. Already my son is missing out on opportunities because he can't handle certain environments. What if that doesn't change? My faith in unschooling is shaken somewhat when it comes to these questions. I'm seeking assurance from people who have BTDT that this is, indeed, the case (that RU works even for these kids) and that while my kids may have special challenges they can be overcome with time and support. What I'm afraid of is that them having AS (or something else perhaps) means that the assumptions upon which I've based our unschooling life do not necessarily apply in all instances with my kids. If that's the case, then I don't really know what to do.
*** But what if he doesn't outgrow it? What if I end up with a 14 year old who, when he loses his temper, lashes out and hurts people ***
What happens to kids who can't read until they're 12 and parents and teachers begin pressuring and worrying when they're 6?
Have you read anything by Anne Ohman? She has a son who might be diagnosed as having Aspergers.
She also has a Yahoo list: Shine With Unschooling
Mariah, your kids are still very young. As I re-read over your posts on this topic, I came across this from you --
His "aggression" for lack of a better word (because it's not always associated with anger or any ill will), is something we've been dealing with since he was 2.5. He's gotten much better over the years, but it is still a heavy burden to deal with when socializing with other children.
You say that In the last 3+ years he's *gotten much better*, but you're afraid your kids will never *get* the social aspects of life. Has something recently changed to frighten you, or are you just feeling that maybe your life with your kids will always be different in a bad way? Everyone has a unique path. I've found the best way to make unique, good, is to not let fear direct my thoughts and responses to my kids. When the frightening voices fill your head, can you remember how far your son has come in the past three years? Let that guide your deep breaths and give you some expectancy it will get better? That maybe today is just a bump in the road?
My oldest son (who definitely doesn't have Asperger's, btw, but is just very, very sensitive) has always been prone to rages. When he was younger (say up to age 10 or so) he would sometimes hit me. Still, at 26, he can go from fine to raging in seconds flat, tho his rages now tend to be self-directed; his go-to is abysmally hopeless fear, which makes him angry and he lashes out at us (verbally) because we're where he's safe. And today, it's better than it's been, tho it comes and goes depending on how good his life has recently been.
My middle son (age 15) who hasn't been formally diagnosed, but definitely would be found somewhere on the autism spectrum (oldest son is convinced middle has Asperger's -- I think he's just a lot like his grandpa, but with an undamaged soul) has recently just begun to pull together all the bits and pieces it takes to figure out other people's motives and desires. Still he and my youngest (10) occasionally fight like cats & dogs. It seems all my boys have a real talent for chain-yanking with a brother.
We've found that there are up years and down years. The entire year Andy (second son) was 8, was awful, terrifying. Andy was desolate most of that year, and said *I wish I'd never been born* countless times.
Some books that were most helpful to me are The Highly Sensitive Child (there's also a Highly Sensitive Person book), which really helped me see so many of the bits and pieces of my kids that baffled me. It also went a long way to explain my own struggles with so many aspects of life. I'm a HIghly Sensitive Person, too, as it happens (and by today's standards I'd likely have been somewhere on the Autism spectrum, but in 1970 no one expected smart girls to have social skills, so I got a pass). Also the Out-of-Sync child book was helpful for understanding some of my middle son's sensory differences. Just skip the chapter on school in both books -- they're dreadful for making your unique beautiful square peg of a kid fit into a round hole.
I've been a member over at Anne Ohman's Shine list since the beginning, and while it's definitely not a list where you can find ways to *fix* your kid, and really Anne doesn't consider it a special needs list, but a place to celebrate the unique shine that is in everyone (parents, too), it has been enormously helpful to me to find a tribe of people who have been many of the places I've been as a Mom.
you can find her group at http://groups.yahoo.com/group/shinewithunschooling/