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e_moon60

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Talking about Autism [Jul. 23rd, 2010|10:15 pm]
e_moon60
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Renee M. Wendel, down at Texas State University in San Marcos, invited some parents to come address one of her classes about what it's like to be the parent of an autistic child.   Predictably (I think) one of the parents couldn't make it, so there were three of us.  All sufficiently educated and well-off to provide our children with more advantages than is available to many--and all had experienced social and familial lack of understanding, disapproval and sometimes outright hostility from families and society.

I could see the students absorbing a lot of this and relating it to such experiences from other causes, but what you can't get across, unless the person has this experience, is how much autism swallows your life.   One of the things I mentioned in the class was that when R- and I first took our son to the 'autism week' at a disability camp, we had looked forward to finally having time with each other (at least, when he came home from work.)  But it had been years since we'd had any alone-time at all and we found, on the trip back home from the camp, that we couldn't really talk to each other in more than the brief phrases that had been the only thing possible (between interruptions, emergencies, etc.) for that time.   And we had not realized how tired we were, until then, with the tension off for a few days. 

In order to provide what their autistic child or children need, parents devote much more resources to them--they have to.   In two-parent families this nearly always means that one parent loses ground (or loses entirely) in their career, because--unlike with a physically disabled child--those from whom the parents would normally expect support don't give it.   Non-disabled siblings lose out, too.   You know that if you have an infant-to-three year old, the older child will get less attention for awhile...but with a kid on the spectrum, "awhile" lasts decades.

The other parents I met were all the kind who had the energy, time, and money to give...but not everyone does.  A single parent won't be able to hold down a job, because caregivers for autistic children--people you can trust with kids like this--don't exist for the hours a day you'd need them, at a price any but the rich can afford.  I have friends whose grandson has CHARGE syndrome, a multi-organ disability affecting heart, gut, hearing, breathing, and some others I forget.  A purely medical condition that does not produce the off-putting behaviors of kids on the spectrum.  It's taking two parents working full-time and a grandparent sitting up nights with the child to be sure his trach doesn't clog up (he has to be suctioned several times a night) to support this kid, who has already had (and will have more) multiple surgeries for the things that surgery can correct.  They can't get enough night nurses with pediatric ICU experience to relieve the grandfather...but they have three nights covered.   If they didn't both have good jobs with medical benefits?   That kid might already be dead.   A child on the spectrum is every bit as demanding in terms of the time and energy it takes to care for him...but what would be needed to free a parent to take a full-time job does not exist.

So I meet those who don't have the money or the education and certainly don't get any public support on the parent-support groups online.  Many of them, like me when M- was little, can't take the time to go to meetings, if there even are meetings of parent support groups where they live.   They're isolated in their homes, struggling to cope.  And they're luckier than the ones who can't afford a computer or an internet connection, the ones I hear about only through the others.   Because for all that's said about the smart nerds who have kids on the spectrum and are employed in the computer industry at companies with benefits...autism exists elsewhere too.  Often misdiagnosed as "severe retardation"  or "emotional dysfunction" or even, still, "childhood schizophrenia," autism is found from the slums to the gated communities. 
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Comments:
[User Picture]From: karalianne
2010-07-24 03:24 am (UTC)
I think it's abysmal that there aren't enough supports for families dealing with "invisible" disabilities. And that caregivers with the training are so few and far between. And that those who have the training charge so much as to be prohibitively expensive.

What can we do to help the families who can't get the support they truly require?
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[User Picture]From: e_moon60
2010-07-24 05:11 pm (UTC)
So glad you asked...(as this was brought up briefly at the panel yesterday.)

Those who want to do something to help can volunteer to be respite caregivers for families with an autistic family member, after learning enough about autism to absorb what the parents will tell you. Respite care--even two hours--is a crying need.

You can see that from comments here, as well as elsewhere (and in the panel yesterday.) People are perfectly willing to express either criticism or sympathy (sometime the gooey kind that makes me want to heave) but not so willing to do any of the following: care for the child at parents' home or their own for two hours a week, help set up and monitor a "circle of friends" group of other children who, with adult support and guidance, give an autistic child the experience of supportive peer interaction (this program exists in some school systems, but needs additional volunteers to be workable, including parents who will encourage their NT child's participation, invite child for sleepover (when parents agree it's now feasible), offer care of the non-autistic sibling(s) of the autistic child so they can have some social outings without being quasi-caregivers, offer care of the non-autistic siblings when the parent(s) need to take autistic child to for medical care, and (for the affluent) help pay for the support that's not covered by insurance or public programs.

The way our society works now, people do not have the kind of support networks that our grandparents had. And the isolating effect of autism is such that even if the parent has enough energy and confidence to ask for help...people vanish, not wanting to do anything but talk. Their kids get older, and the parents think having an autistic friend isn't cool--or the kids get teased about it and pull away. It takes parental cooperation for an autistic child to have any peer companionship (an organized program that provides play circles often works best, as the NT kids get to feel proud of themselves rather than contaminated.)

So those who want to help can offer--not in a vague way, but in specific ways...and not to "correct" the parents, but to learn from them, and be a real help. I bless the friend who let us bring M- to her house, but also had her own rules (no jumping off the stairs), which gave M- the chance to a) experience a house with two stories (ours isn't) and b) experience different rules, an exercise in flexibility. As he grew he learned that my friend and I have different standards of humor (at home we had long, autistic-led conversations on that: "Mommy thinks X is funny, but mommy's friend R- doesn't think X is funny...")

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[User Picture]From: karalianne
2010-07-24 05:23 pm (UTC)
I used to work full-time with autistic children (1999-2005) and have done respite care (in their homes, not mine). I have training and experience with behavioural intervention, play therapy, alternative communication methods, and sensory integration techniques. I currently live in a city where there is one service provider. I'm supposedly on their list for respite care providers, but I haven't had any calls yet. I think there should be more than one option for families, but I am not a psychologist and I'm not sure how to go about making that a reality without a professional designation.

Right now, I spend two hours a week with an 18yo girl who has severe OCD and a developmental delay. We go shopping and hang out and go for walks and go to the library. The kinds of things that she would do with her friends, if she had friends who she saw outside of school. I keep the stressors as low as possible (to keep the OCD in check) and so she gets a break and her family gets a break.

I work from home, so I could take a couple of kids for a couple of hours a day. I just don't know how to find the families who would need/want the kind of support I can offer them.
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[User Picture]From: e_moon60
2010-07-24 05:33 pm (UTC)
I'm not familiar with the situation elsewhere, but in the next county over there's an active Autism Society of America chapter and you might see if there's one in your area.

Here's a link to their main site:
http://www.autism-society.org/site/PageServer

Here's a link to their "find a chapter" page:
http://209.200.89.252/search_site/chapter_map.cfm

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[User Picture]From: karalianne
2010-07-24 05:42 pm (UTC)
Thanks.

Unfortunately, the local ASA chapter is a FEAT chapter. (I say unfortunately because that means that they tend to promote ABA-only and don't offer any information about respite care services on their web site.)

I just did a search and found an organization that does offer respite and the like, but it's not autism-specific. I've worked for service providers that weren't autism-specific before, and the quality of services offered to the autistic clients isn't as high as I would prefer. (I am so picky!)

I've been living here for a bit over a year now; I guess it's just going to take a bit longer for me to find my way into the community and figure out where I fit.

Edited at 2010-07-24 05:43 pm (UTC)
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[User Picture]From: klwilliams
2010-07-24 04:57 am (UTC)
One of my best friends from college has an autistic son, and her career abruptly shifted from archaeology to working with autistic children (first her son, but now she uses what she learned working with him to work with other children).
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[User Picture]From: e_moon60
2010-07-24 05:14 pm (UTC)
The prof yesterday used to specialize in the speech pathology of traumatic brain injury...but now her specialization is autism. I know of many careers that changed direction or were abruptly curtailed completely.

Sometimes the autist in the family becomes a catalyst for one or more family members to be more productive, but that's less common than being so tied up with the child's needs that there's no spare energy or time. Parents become, of necessity, specialists in autism--but are still, to too many professionals, "just the mom" and thus unheard. She is to be talked to, told what to do...what she has to say has no set of letters behind it and is thus considered unimportant.
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[User Picture]From: nimitzbrood
2010-07-24 05:43 am (UTC)
Thank you for writing this!

My wife and I are parents of a 13 year old daughter on the autism spectrum and I can say with much certainty that you've hit the nail on the head on all accounts.

Now add to this that I'm a high-functioning autistic myself (hey there were no words for that when I was born in '69) and it strains our relationship quite a bit.

Even with my current unemployed state it's still hard to keep up with her even though I have more at home time because I'm beating the bushes for a job. (Which is a job in and of itself.) If we could get one serious check per week from somewhere to help us out with her support I would be able to devote myself to being a full-time house husband and everything would hopefully stabilize. This is why I've got a bunch of irons in the fire to try and bring in income without having to leave the house.

That said there _are_ a number of pluses to us having an autistic child because _I_ learn from her experiences. The more she grows the more I grow. And that's a good thing for both myself and my wife.
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[User Picture]From: e_moon60
2010-07-24 05:18 pm (UTC)
I was certainly lucky in being able to work from home as a writer (though learning to write whole novels in five, ten, and fifteen minute segments through the day was not...um...easy.) Somebody has to be with the kid every minute, every day, until (if you're lucky) the kid becomes able to self-monitor for at least a few hours, or you find someone else (affordable) to do it.

I have no door on my study, so that I have a view of the room across the hall, a bit of the hall, and can hear clearly what's happening in the other bedroom and bathroom. Or almost everything. The poo smearing was a silent unwanted activity, and I wouldn't know he was up from his nap in time, always.
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[User Picture]From: nimitzbrood
2010-07-24 06:06 pm (UTC)
Oddly I'm leaning toward writing as well (got a Torn World story in the submission queue and got my first rejection - Asimov's) but I'm completely newbish at it and am nowhere near being able to bring in money doing it yet.

As for monitoring she's quite fixated with the TiVo and to keep her from wandering the house in the wee hours of the morning (she has my sleep patterns as a kid - I slept 5 hours max each night) we put the TV and TiVo in her room. I know that's horribly bad parenting but it was better than the one or two times we found her outside the house! It's on a timer now though so she can't wake up at 3 a.m. and turn it on. And she's getting interested in her computer so that helps a bit.

On the subject of bad habits - yeah she did the whole poo thing too but thankfully grew out of it. Now she chews paper which while it is an unwanted activity I know it's going to be hard to train out because I still do it every so often if I'm frustrated or concentrating on something heavily. (Oddly I took an informal poll of my geeky friends and almost to a one they all chewed on paper at some time in their lives.)

In the end though I'm like any parent and have hopes and dreams for our child. I've been watching her growth and from a cognitive standpoint it looks like she's starting a sharp upturn finally. Which after observing my own progress and the progress of others does not surprise me. From my observations most autistic people have the same "curve" of mental growth so to speak - a long shallow rise then (provided they are helped and prodded) a sharp upturn and a rapid rise. (That's a small data set so I may be off base there.) The thing I see that affects this greatly is if the parents and teachers keep teaching the person at all times. If there is a stop because someone gives up then things plateau out until pushed again.

And here I've rambled for almost a page so I'm going to go back to resting up before helping a friend continue tearing apart his living room. ;-)
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[User Picture]From: controuble
2010-07-24 02:07 pm (UTC)
I'm pretty lucky in a lot of ways where it comes to dealing with troubles_son, but your post certainly brought a few of the problems I do still have to deal with crashing home. My son's first diagnosis came 2 years after my husband died so I've been dealing with this entirely as a single parent. I do have an Individual Care Grant (ICG) for him that pays for quite a few of his needs, but that doesn't mean I don't have to track down the provider/supplier/whatever, just that I don't have to pay for everything myself.

The daycare/after school care/sick kid during the work week is a nightmare (I think the fastest he ever got kicked out of a daycare was a half hour - I dropped him off and by the time I got to work there was a message waiting for me to come pick him up) when you are a single parent and it only gets worse as the child gets older. I don't think there's anyplace in my entire state willing to look after a child who is older than 12 who has "behavior issues." They all seem to assume that a child of high school age is perfectly capable of being home alone for several hours a day (until I can get home from work.)

My job had been pretty understanding about my needing to rush out every now and then and I was supplied with a laptop so I could work from home on those occasions years before the rest of the department moved from desktop to laptop computers. Now? Unemployed. I don't even know if I get another job, can he be covered on my insurance (if I can find a job where that's one of the benefits) or is being on the spectrum considered a pre-existing condition and I will have to pay for his meds (NOT covered by the ICG) out-of-pocket? At retail prices, they run almost as much as my mortgage.

While I have heard of parent support groups, I have never tried to go to one because I couldn't figure out what kind of support they offer. A shoulder to cry on? I can get that from my mom or one of the LJ groups I belong to. To me 'support' implies 'help' and what kind of help can someone else dealing with the same problems provide? Everyone is different and what works for their kid might or might not work for mine. That kind of help I prefer to discuss with his therapist.

It's a good thing this is electronic or it would be unreadable due to the splotches all over it - I've been bawling my eyes out as I type, but like I said at the beginning, it just came crashing down when I read your post.

Thanks for listening.
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[User Picture]From: e_moon60
2010-07-24 05:22 pm (UTC)
I have blurry screen virus just reading your comment. What a HUGE load you're carrying.

I never went to parent support groups for many of the same reasons (and they were fifty miles away and that meant the gas for a 100 mile round trip and the time--at least an hour there and an hour back--for which I'd need a sitter that didn't exist.)

Luckily, we've been able to dodge the meds bullet so far. Things that would have been "Get this child on meds" from the school I could handle at home without them. He may, as many adult autists do, need a mild antidepressant sometime in adult life, but so far (knocking on the nearest wood) he's OK without.
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[User Picture]From: shade53
2010-07-24 07:03 pm (UTC)
I'm still new at this, my son was only diagnosed in December but I love my support group. A small group of moms where I'm at, we got together and started our own support group as the other one in our area (part of one of the national groups)- I've heard some horror stories about. One mom left a meeting in tears and never went back because all they wanted to tell her was about all the horrible things her child would do, which is good to know I guess, but not a week or so after you get the diagnosis when everything still looms huge and frightening. We are trying to be more than just a place for parents to vent - though that's good for them too - but we're trying to be a place to learn as well. We talk about types of therapies, what has worked for us, what hasn't, how we are able to deal with meltdowns and the strains on our other children. We've had our local birth to three coordinator come to answer questions, there is always someone from our hospital's speech and ot department, and the woman who runs our local special needs preschool comes (or a rep. of the dept.) every month. Next month, we're doing a car wash to raise money for a Boardmaker program for the entire group and we hope to be able to raise the money to buy some of the assorted equipment that no one ever covers for the local families who need it. We help each other find and apply for grants as nearly all of us have been denied title 19 (wv's assistance program that includes respite care). A support group is what you make of it, I guess. Either that or I just got really lucky with the people I've met.
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[User Picture]From: e_moon60
2010-07-24 08:11 pm (UTC)
It sounds to me like you've done wonders with yours. Congratulations!

But you know, some people are just better at that than others (as in anything else.) Maybe the parents in the other group just weren't that good at creating a truly supportive organization.

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From: joycemocha
2010-07-24 04:12 pm (UTC)
Even the high functioning autistic kids face a lot of challenges that their neurotypical peers don't. While my son was never as severely challenged as M, that had problems in itself because his language processing was severely impaired while he was clearly sufficiently intelligent to function in a general education setting. School was hell for all three of us until he hit high school. I had to take a time out from my own career development to help him through, and then you add the Crohn's Disease on top of it, and it made things crazier.

Additionally, he was running at the edge of acceptance for high functioning autism while he was going through school. If he'd been more impaired, paradoxically, it would have been easier to get more assistance than we did. But he was just a notch above that level, so services were hard to get.
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[User Picture]From: e_moon60
2010-07-24 05:26 pm (UTC)
Yes, I know families with very high-functioning kids with Asperger's--bright and verbal--who still have a lot of problems.

The first time I realized how very warped the classification stuff was, the woman telling me her story had a non-autistic but otherwise mentally handicapped son who had qualified for supportive help (I forget what, now) in a local school. With that help, he made good grades. So, because he made good grades, the school removed the supports...and he started flunking. So, they scolded his mother because his grades dropped...the fact that he made good grades with supports meant to that school that he COULD make good grades without supports. (Like--if the kid can walk and run with an expensive artificial leg, does this mean you can take it off and he'll still walk and run? Does this make sense? Of course not.)

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From: joycemocha
2010-07-24 06:56 pm (UTC)
Unfortunately it's a paradox I'm all too familiar with as a special education teacher. I can argue all I want for supports, but sometimes I get overruled by general education teachers and by administration.
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[User Picture]From: e_moon60
2010-07-24 08:12 pm (UTC)
And yet, YOU are the one with special expertise, right? You should be the one able to say "Needs supports" and they have to listen. But that's not how it works, I know.

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[User Picture]From: judifilksign
2010-07-26 04:19 pm (UTC)
I am also a special education teacher, with an autistic daughter. It was sooo frustrating to me to suggest supports and plans for my daughter's classroom, to have my advice disregarded, and my daughter vilified by her regular education kindergarten teacher.

Because of her refusal to implement any supports, my daughter was moved to an autistic program run by the county, and I bless the day that happened.

Reading this post really, really describes our life so clearly, and I consider us a pretty functional example of getting by and succeeding.
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[User Picture]From: e_moon60
2010-07-26 04:34 pm (UTC)
I find it interesting (er...that's not strong enough, but for now...) that schools and social agencies so often disregard the medical diagnosis of a medical condition (such as autism, but not limited to that) and instead insist on their own diagnostic rights. The hostility that so many people feel for kids with autism astounds me...their determination to blame the child instead of helping the child.

M- was just classified by one county's MHMR as Asperger's Syndrome instead of autism on the basis of his communication ability now. Whereas the crucial to the distinction between Asperger's and autism is _no delay in developing language_. M- was totally nonverbal until after age 3, with very slow and compromised language development later (basically, not understandable by anyone but family and one therapist until around age 7 or 8) and he still has both speech and communication problems now. The MHMR is apparently using "can talk" as the distinction. I know people with kids who have Asperger's, and those kids talk WAY better in elementary school than M- does now.
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[User Picture]From: moonsinger
2010-07-28 01:52 am (UTC)
My son was diagnosed at 2 1/2 with apraxia of speech; he spoke with a glottal stop with all his words. He and I were in a car wreck this past February that was nearly fatal for me, and he broke his leg. His speech prior to the wreck was improving thanks to the private speech therapy and PPCD (pre-pre school for children with disabilities) program at the local school district. Now he's about 95% understandable, but he's likely to have other LD's as he gets older--dyslexia and/or AD/HD.

I was pretty down about his situation at first as I wasn't sure if he'd ever talk. A friend of mine who has a child now 5 that is autistic but non-verbal told me that he'd have been happy if his son could speak any words at all. His son is supposed to be about 6'8" (both parents are over 6') and unlikely to speak. He communicates on one of the boards with pictures, but no speech yet. Other than going out of my way to do things with him (we see him a couple of times a month) and inviting him and his family over for parties, I wish there was something I could do. Their son has seen countless specialists and goes to a program at school that is for autistic children. They are upper middle class but I can see it wears on my friend. He's just not as happy as he was.

I know I have learned that it takes a special person to help a special needs child, and I've tried to be that.
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[User Picture]From: e_moon60
2010-07-28 03:04 am (UTC)
You are coping with a lot...your son, your injuries...wow. And trying to help your friend. Actually, by providing another social space for that family, you're doing the most important thing.

You are doing a great job.
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[User Picture]From: moonsinger
2010-07-28 03:57 am (UTC)
Thanks. I try to be there for my friends and be a good mom. Not to mention trying to get my first sale as a fantasy writer. I'm recovering well. 6 months ago not sure if I could walk. Now I'm working on getting rid of the limp. I had some great docs put me back together (broken hips and internal injuries). Not to mention I re-read Deed of Paksenarrion and read Oath if Fealty while I was rehabbing. :). Still cried!

I'm glad to know that just being a good friend helps.
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[User Picture]From: xandg4ever
2010-07-30 02:45 pm (UTC)
We have been fortunate with services that my son has received. But even early intervention still leaves lots for us to do. There was speech and OT for my son, but no support for us. He is now 6 and heading to first grade. He still has social issues and some kids laugh at his arm flapping. He will be integrated to a "typical" class with some support. Because he had such improvement in Kindergarten, his services were cut in half. We are hoping this doesn't set him back. We are excited and hopeful about his progress but there are still tons of worries.
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