Tell the parent of an autistic kid

Miscellaneous and Personal Stuff I Must Share
21

Does your son have sleep issues?

You have to figure out how your son learns (even more so than with regular kids). Austistic kids tend to need a lot of repetition. You break things down into micro-steps, and then put the microsteps together like building blocks. Figure out the stress rsituations, how to manage them, and how your son can self calm himself. If shopping in the supermarket on a crowded Sunday freaks him out, well then don’t shop on Sundays.

Look into an all in one PC with a touch screen. HP, Lenovo, Dell, etc all have different models. In the US these are down to as little as $599. You son can use his fingers to play with the PC. There’s something called Zak’s Browser. Search on it. It’s a free download. Some rich businessman was frustrated with the lack of computer stuff for autistic kids and especially his grandson Zach. Grampa commissioned a special browser that is a simple portal that is very easy to use, does not overload, and is filled with tons of free educational and entertainment stuff appropriate for autistic kids. My daughter loves it. Gives her a ton of freedom.

The other thing is that autism can be very hard on a marriage and the rest of the family. It depends on how much you need to watch your son. I’ve “heard” that 80% of marriages with an autistic child fail - seems high but I can believe it. So, don’t forget to put some effort into the entire family. Your son sounds high functioning and is not a danger to himself if not watched constantly.

ABA therapy is really big in the US and we’ve just started it.

good luck

22

My friend’s kid has sleep issues as well. Is this related?

23

Something like 10% of kids on the autism spectrum have sleep issues. It’s probably related that the brain regulates sleep, and autistic brains are not wired in the same way as non-autistic brains.

Just to be clear, in my daughter’s case. She would fall asleep between 8:00 pm and 1:00 am every night in a random pattern. And she would wake up wide awake for 1 to 4 hours between 2 and 5 times per week. And it was not safe to leave her alone when awake. Sucked for her and everyone else. And it’s not something she is likely to grow out of until puberty.

Melatonin can help some kids fall asleep and usually not so helpful for night time wakings. Benadryl can help some kids but not so good for a daily solution.

My daughter takes 0.5 ml of Clonidine, which is a very mild safe high blood pressure medicine with the side effect of drowsiness. :slight_smile: My daughter still wakes up 19 out of 20 nights sometime between midnight and 4:00 am. She gets another 0.5 ml when that happens and is back asleep within 15-60 minutes. Net net, she gets about 10 hours of sleep per night, I get more or less a full night’s sleep, and I’m guaranteed that she will be asleep by 8:30 pm. It’s been life changing.

Tell your friend to ask his pediatrician. He probably also needs to get a referral and then visit a Children’s Hospital Pediatric Sleep Clinic on the next trip to the US.

24

They’ve had him seen by a sleep clinic in the States, so they are being proactive about it. I’ve wondered about the connection, but we haven’t discussed it specifically.

My friend is thinking about moving back to the States since the care is so much better there than in Tokyo.

He is an attorney for a Fortune 100 company, but they don’t have a post for him in HQ, so it would involve changing jobs.

25

I have to get something off my chest regarding ABA - a lot of the families in my online support group use it and absolutely swear by it, but the more I investigate it the more I get the feeling that I Really Don’t wanna do it.

Without prejudie or comment as to anyone else’s reason for doing or not doing ABA-type therapies, in Daniel’s case it seems to play away from his strengths, not to them. He’s very stubborn, and he likes things to have a meaning and a purpose. The psych tried to do an intelligence test on him and it went nowhere, because (IMO, projecting wildly) “ok, she’s showing me a picture of a bear. And I should respond by saying ‘bear’ because … why exactly? What’s in it for me?”. And this is a point of view I have deep sympathy with - why should he, for instance, respond to someone making a pattern out of blocks by making the same pattern with his ones… when what he really wants to do is Build A Tower (he likes towers).

The approach of breaking down everyday activities into very small discrete steps seems to take the content and meaning out of the interaction, till the only motivations the child has for learning the skill are either to please the adult by performing appropriately (and he really hates ‘performing’, or any sense that people are looking at him to see if he’s giving the ‘correct’ response), or external motivators/lollies, which is totally at odds with my parenting philosophy in general. And I know he’s different from the girls because of this disability, but … in some ways not. I can see his personality traits have come from the same pick’n’mix bag all the rest of us in the family have been dipping into. Just in some cases exagerated, and in combinations that are maybe not helpful to his learning.

Anyway, that’s my deep dark secret which I can’t say on the ASD mums board, because there are so many ABA families there and (being full of chicks) it’s something of a “be supportive or STFU” kind of place (not totally - they’re more robust than a normal “mommy board” … but nowhere near the level of Dopers). I’ve been doing investigations into RDI and Floortime, which seem closer to the sort of direction I would want to go in.

About the first thing the Speech Therapist did with us when we started seeing her - which was wildly successful and has coloured my thinking ever since - was she said “stop trying to show him how to play ‘right’. Watch what he’s doing. You do the same - even if it looks silly. He’s ignoring the toys and using the box lid as a hat? You use the base as a hat. His has fallen off? You make yours fall off”. The way this made him open up and smile and actually pay concentrated attention to me and what I was doing was simply beautiful. It was a real turning point, and we’ve been building on it in similar ways ever since. And it’s why I love the Speech Therapist.

He doesn’t have sleep issues, thankfully - my sleep is crap enough by itself without adding someone else’s issues into the mix. He’s slightly under quota for a “normal” 3yo, but he still sleeps longer than an adult, which is all we really need.

26

What’s ABA?

27

I know you’re little guy’s still pretty young but if you’re hoping to send him to school in a regular classroom, he’s going to need to know how to please the teacher by performing appropriately, lolli or no lolli. Ditto for making friends. “Sometimes we do things just to make other people happy” is an important skill for socialization.

That said, of course, there’s no one true therapy for every child. What does the Speech Therapist say about it?

28

I don’t know what ABA is and have never looked into specific therapies for ways to help my daughter, preferring to work things put for myself, but I do break tasks she finds difficult down into small steps and it makes a huge difference.

I’m not sure what you mean by the motivation to learn a skill; breaking down ‘getting dressed for school’ into twenty or so discreet, chronological steps made it possible for her to dress herself for school. Her motivation was ‘I need to dress myself for school.’

But I might be misunderstanding what you mean. I’d probably find such a board to be full of sugar-coated annoyances, so I empathise there.

29

ABA = Applied Behavioral Analysis

Learn what works for your child. Especially now. He’s pretty high functioning so some of the “standard” approaches may not be a good fit. Hell, most therapists will say there is no one approach and no right approach to autism, and each child is different. If you don’t hear that, I’d be leery.

In a year or so, then maybe you can start working on how to prepare for a school environment.

30

I forgot to mention there are a lot of things that you could “teach” your son that is useful. For example, the concept of time and staying on task. In other words, we will do x for 10 minutes. Or the concept of first x then y. First we will read for 10 minutes, then we will play for 10 minutes.

Again, depends on the kid and how they learn or are wired. For whatever therapy you have and it needs to be reinforced at home it’s a simple concept of 100% reinforcement. Not sure if this makes sense or not. It’s kinda like you figure out what works now with your son, make some advances, and then start introducing a new behavior you want him to master.

Not that I’m an expert as a) we diagnosed pretty late b) autism is a catch all bucket now c) my daughter clearly had birth trauma (born limp, blue, not breathing and a month in the NICU) and the current autism behavior analysis could care less and d) we just started down the ABA path a week ago.

31

I’m the father of an 8yr old boy who was diagnosed to be on the Autism spectrum when he was barely three. At the time, he spoke three words, did the hand leading think, would not look you in the eye, would stim off things that spun or rotated, and had been, as a baby and a toddler, a horrible, horrible sleeper. I spent two to three years in a constant state of sleep deprivation akin to parents of a newborn.

We were very fortunate in two ways. The first was that we were living in a jurisdiction that funded intense pre-school and in-home therapy right away for kids who were diagnosed. The second what that we were in a situation where we could afford for me to quite work and be with him full time. Since at the time I was working in a toxic environment in a failing company, the choice was mercifully easy.

5 years later, he is fully verbal and functioning well in a regular community school. Las report card he brought home 3 As. He has thrived beyond the expectations of the therapy teams.

What I tell parents of kids with autism is that, in a way, and speaking strictly about the parent, they are kind of lucky their kid’s diagnosis is autism, and not needing a liver or a heart transplant. Parents whose kids are mecially sick must watch helplessly by the sidelines. They can care, love, encourage, support, but not really do anything significant to help improve their kid’s fundamental problem. Many such parents often say, in a fit of helplessness and despair, that they would trade their own lives if only ot could make their kid all better. Not with autism. With autism, parents can make a big difference. You can actually DO something instead of watching helplessly. One of the principal factors that convinced me to quit my work was seeing some hard data showing that kids whose parents participated in the threrapy sessions had measurably better outcomes. So this is what you can do: be in the room when the therapist works with your child, as much as you can. Ask them what intervention techniques they’re using, Watch them. If you’re lucky, your kid will get between 2 and 3 hours of therapeutic intervention per weekday. You can continue to use these techniques whenever you’re with your child. Evenings, weekends, before and after playschool / kindergarten. Your kid’s therapist will receive direction from some professionals, likely a speech pathologist, an occupational therapist, and a developmental psychologist. Attend these breifings. Learn the same strategies the professionals are teaching your therapist. Share with the professionals your observations about your child to help them get the best understanding of their needs.

Do you remember the dreams you had, when your child was a baby, about all the great things you would do together, what you would teach him. And now these dreams are threatened. You’re scared they may never come to pass. Some kind, well meaning people have told you that it’s better if you forget these, that you should morn them. Well. I’d like to offer you hope. Hope that you can get these back. If you’re willing to work hard.

Mine did.

Trusquirt starts basebal season in May. He’s gunning for another A in science and math in a regular classroomn. And now, I gotta go. He’s done his bath and wants to play a boardgame with us before bed.
(sorry if I missed any typos)

Good luck.

32

I’ve got two girls on the Autism Spectrum 6yo and 7yo. My youngest was diagnosed when she was 3yo, the oldest when she was 6yo.

The most important things I’ve learned

  • Sometimes people are different and that is okay.
    Sometimes people are on the autism spectrum and that is okay.

  • You are not alone, there are lots of parents of children with Autism and lots of people with Autism.
    Thank god for the internet, especially the good folks at the Unaboard who helped me through the early days of my youngest daughters diagnosis and have supported me through the journey since then.
    I blog a lot about autism in our lives (亚洲AV无码片一区二区三区,原创国产AV剧情丝袜秘书,亚洲色大网站WWW永久网站,久久精品久久电影免费理论片), not just the negative moments but also the positive moments. It has provided another great source of support and information.

  • You are the person who knows most about your child, the professionals know the most about their specialty, it is up to you to take their specialist knowledge and work out how it applies best to your child.

  • Tony Attwood, Temple Grandin, Carol Gray - names of people who have written very insightful books about Autism and who also speak about Autism. If you have not already try to see the Temple Grandin movie.

33

Just noticed you are in Melbourne also :smiley: my brain is a bit vague this morning.

I’m not big ABA fan either, we had great success with early intervention through Kalparrin EIC.

If you are on Facebook there is a support group for parents of ASD kids in the Melbourne region that you can join up. It is a private group so I’d have to send you a group invite to join up. Group is called “Parents of Aspie /autistic kids in Melbourne”

Tony Attwood will be speaking in Melbourne on June 10th if you are interested in hearing me talk, I’ve found him fantastic on the two occasions I was able to attend his seminars - http://www.tonyattwood.com.au/index.php?option=com_content&view=article&id=879%3Ajune-10-melbourne&catid=195%3Avictoria&Itemid=710

If you have not already done so, then join Autism Victoria - http://www.autismvictoria.org.au/home/

Sign up for the Carers Allowance - http://www.centrelink.gov.au/internet/internet.nsf/payments/carer_allow_child.htm - it is about $100 a fortnight, not much but it covers a bit of private speech therapy.

Get your Carers Card - http://carercard.vic.gov.au/ - Discounted entries to places such as the Zoo and Museum make a big difference when you have a child who hits sensory overload early and can never stand more than 2 hours. Wish more cinemas were included on it, my youngest can still only do about 15 minutes of a movie on the big screen before hitting sensory overload and leaving.

34

I mean learning small discrete skills like “look at me” or “sit down and be quiet” when cued, but not actually in the situation in which that skill would normally be used. The idea is you do it over and over again, rewarding them for doing the right thing each time, and then it becomes ingrained that, f’rinstance, when someone says “quiet now” you hush and be quiet. The philosophical point is whether it’s enough to teach a wide range of automatic responses to specific situations, or whether it’s better for the kid to spend more time working out how to make sense of his environment in his own way, and trying to develop skills like generalising, and making connections between different situations, and using rules of thumb. I think. :wink:

And everyone does need a certain number of automatic responses (sit down’s a good one for school) - it’s just a question of what you’re focussing most of your attention on.

trupa thanks so much for that post, it really clicked with me. And, in fact, so far we seem to be going down a very similar road to the one you’ve been on. I have also quit work to be full time at home (not, at the time, specifically for Daniel, I was just over it, but as it turns out, that’s worked out pretty good) and it’s my intention that, basically, we’re going to be doing the stuff. We need the therapists to tach us techniques, and we do them. After all, who is he going to trust and follow better than his family? And we have up to 80 hours a week to work in too, not that you could actually be considering yourself as “doing therapy” for ALL those 80 hours, you’d go crazy, but compared to the number of hours he’s with an actual therapist each week, it’s a goldmine of opportunity.

And I am very thankful it’s something we can do something about. At about the same time as Daniel was first being investigated, friends of ours discovered that their gestating youngest daughter was developing with no skull :(. We went to her funeral just two weeks ago. There’s always something out there to keep things in perspective.

Leechbabe That’s nice to know about Kalparrin - we’re on the list for that (among other places). Sadly, we’ve been told that it’s unlikely we’ll get a public EI spot till next year - around about Christmas is apparently the worst time to get diagnosed because everything’s full up for the coming year, and then everyone stays where they are till the school year after, when it’s all change.

Like your blog :slight_smile:

I’m umming and ah-ing over whether to say please send me an invite to your facebook group - I’m a terrible facebooker, I never do anything on it except reply to direct invites or messages. But if you don’t object to having someone in your group who will probably lurk about 95% of the time…;). You decide.

35

Our youngest son is autistic, which mostly showed itself in very delayed speech development. He’s now seven years old and is thriving in second grade. One of the best days of our lives with him was when his teacher said, “If I hadn’t read all the reports, I would never have even known he was autistic.” Early intervention, lots of reading, playing and love can really make a difference. Good luck!

36

I can’t find the link, but sometime last year I read an article about a parent who had started a job placement business for folks like his son on the autistic spectrum. There are lots of jobs where aspects of autism are a benefit rather than a hindrance.

37

I worked with two little boys who had autism, and something my boss stressed but I seldom seen discussed is the fact that kids who have autism generally have very poor handwriting, so it’s important to teach them to type as soon as they’re capable of it so they have that avenue as a way to communicate in writing. The older boy (who was 5.5 when I met him, but had already begun using a computer by then) really hated the learn to type program, but he was able to pick it up pretty quickly as long as we used stickers on the keys - usually only 2 per lesson - and ones on his hands that were color-coded like red sticker on L + red sticker on right hand, purple sticker on M + purple sticker on left hand.

38

I just got back from an IEP meeting at my daughter’s school and the school counselor is recommending retesting for autism spectrum. She said Bella exhibits six out of ten markers. I should have asked exactly what they were but I was not expecting this.

39

Good Luck.

This might help a little - http://www.autismvictoria.org.au/diagnosis/

The impairment in those three key areas can be broken down into 10 indicators as listed here - http://www.ehow.com/list_5481289_signs-autism.html
I sometimes think Autism is mis-named, it should be Awe-tism because I’m personally in awe of how much my girls achieve despite the huge hurdles they have to overcome just to do what to a neurotypical person are very simple tasks. Everything from getting dressed to going to school, talking to the teacher, listening, communicating, they do it, sometimes it takes longer, sometimes they need prompting but they get there in the end. :slight_smile:

40

The waiting is so hard. I was very grateful we were able to access support through private speech therapy during that time to at least get started at home.

Thank you :slight_smile:

Sent a PM about the facebook thing :slight_smile: