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Discussion in 'General Parenting' started by midwestdad, Apr 19, 2009.

  1. midwestdad

    midwestdad Lost

    Just found this site today, and have really identified with a lot of your stories! I have twin 8 yo boys who were diagnosed AS at age 4 that I suspect are also ADHD/ODD. We're getting lots of bad behavior both at home and school despite an army of behavioral therapists and having tried a number of medications.

    The special challenge is that my difficult children are almost completely non-verbal, only requests for very preferred objects. Has anyone had exposure to a situation like that?
  2. slsh

    slsh member since 1999

    Hi Dad and welcome.

    My oldest is nonverbal. If I could have a redo, the one thing I'd change is how assertive I was in getting some form of communication system going when he was younger. We've been putzing around with various "systems" since he was in the birth-3 center - picture boards, key phrases taped to his wheelchair tray, assistive tech devices, etc. We're still without a functional method of communication aside from yes/no questions and word approximations when we're giving him a choice- he's unable to initiate communication other than hollering "hey" and then we have to figure out what he wants/needs - imperfect at best.

    What I find most frustrating is that these kids are *not* unique, but I feel like we're reinventing the wheel, over and over and over again. Just our experience, but I have yet to run into an Speech Language Pathologist (SLP)/Occupational Therapist (OT) in a school setting who has a clue about how to work towards meaningful communication access.

    Have the boys been evaluated for assistive tech? If not, I'd recommend an evaluation preferrably at a rehab facility rather than in the school district - independent evaluation here is definitely a reasonable request in my experience. Is sign language an option? What methods have been tried? Do you think they have the desire to communicate and the cognitive ability? Do they communicate with each other?

    Communication issues are a real bear. I wish I had the magic answer but we're still searching for it here, too.

    Welcome and glad you found us!!
  3. midwestdad

    midwestdad Lost

    Yes, we've done evaluations, like you, for a lot of communication systems, and have been doing assistive tech. The maddening thing about it is that they can use it no problem for highly preferred items, although the drag-by-the-hand method is still the default, but they just don't use it for other things. I'm convinced that the ability to communicate is in there somewhere, but can't get it out.

    The difficulty I'm having right now is that their behavior issues are getting bad enough that we can't even think about teaching, just managing behavior. Have you seen a difference between doing things at home vs. Residential Treatment Center (RTC)?
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    OMG! A MIdwestDad and I'm a Midwest Mom :D

    Now to the serious stuff.
    If your twins can hardly talk, he doesn't have Aspergers. Aspergers is not that severe; the kids don't have speech delays. My son is on the spectrum and I'm pretty well acquainted with it. Autism Spectrum Disorders (ASD) kids need school interventions, in my opinion behaviorists are a wasate of time for spectrum kids. Their brains are wired differently and what works for "typical" kids does not work for our kids, especially if the poor child is struggling with communication issues. My son was horrid and frustrated and sad (and so were we) until he broke into speech at 4 1/2. But he was getting mega-speech therapy in school (five days a week) by the time he was three years old. So he was making steady progress. once he could communicate, most of the behavior problems he had improved.
    I also believe that your twins probably don't have ADHD/ODD--that behavior is probably part of the Pervasive Developmental Disorder (PDD). If he can't communicate he is going to be VERY frustrated. Is he getting therapies in school? Is he in a Special Education class to work with him one-on-one? No matter how bright he is, Pervasive Developmental Disorder (PDD) kids NEED extra help. My son is very smart, but he needed it. Only last year in high school he was basically mainstreamed. All the help in Spec. Ed, including the all-important social skills and life skills helped. Mainstream classes would not have addressed those issues which Autism Spectrum Disorders (ASD) kids struggle with.

    Who diagnosed your sons? Have they ever seen a neuropsychologist? If not, I highly recommend it! A neuropsychologist evaluation touches all bases and will be very intensive--ours was ten hours long--we were much better versed in our son's issues/strengths/weaknesses after that and he really swung upward after that because we knew what to do. He is not on medication. Often Autism Spectrum Disorders (ASD) kids are thrown medication and often too they really don't need it--they need interventions. Sometimes they do need some medications, but not always. Often, stims do nada for Autism Spectrum Disorders (ASD) kids. Often they make them worse.

    Why not tell us more and we'll try to help you.
    Welcome to the board.
    Last edited: Apr 19, 2009
  5. Marguerite

    Marguerite Active Member

    Welcome to the board.

    While it's important to know exactly what you're dealing wirth, don't get too hung up on labels. When you say, "I think they have ADHD too" what you are saying is, "I think these particular problems we're having with them are part of whatever disorder they have, they're not being deliberately naughty; they simply can't help it. And I need to find a way to sort this out so we can help them make progress."

    Am I right?

    If I am, then take tihs attitude - my kids are what they are. I will keep trying to get some sort of accuratte label, but in the meantime, the working hypothesis is, it's all part of the disorder and we will work ourselves to help each little piece of the puzzle, whicl we're eaiting for the experts ro make up their minds.

    There is a lot you can do as a parent, while you're also asking 'experts'. perhaps the most important thing, is trust your instincts. Have faith in yourself as a parent.
    Next - watch the boys. Watch each one, take notes, keep a diary on what you observe. You need to know what they really love, what they really hate, what upsets them, what calms them down. Where possible, give thme what they want but challenge them always, justa little. Keep the pressure on below damaging stress level but high enough so they're not allowed to simply 'coast'. In other words - maintain stimulation and involvement, at a level that they can handle it. Keep moving them towards increasing involvement and improving skills.

    Somewhere there si a key, some way through for you into their world. For my younger son it was the written word 9and numbers). He also loved music. So whatever he was interested in, I gave it to him but I liinked it to something else that would help us communicate.

    Often we help our kids learn by breaking things up into manageable pieces. But something I found with difficult child 3 - he sometimes NEEDS to have the whole package presented to him. For example - his interest in letters and numbers were originally NOT because, "Hey, these are symbolic, they represent something with meaning," but I think, because of their apparent deliberate design indicative of a pettern. He loved patterns. He watched things fall (bubbles, water drops, sand in an hour glass) and of course watched letters and words on crawlers, numbers counting down say on a timer or microwave oven - repetitive but changing patterns were the original hook for him. He would have been content to just look at these all his life, except I made him see that they had meaning, by showing him that numbers meant quantity. I had to physically teach him. We would go on walks and he would run to the next letter box to read the next number. His interest in letters - I wrote words and drew pictures to indicate the meaning of the words. We would then read these words and act out the meaning (words like "stop" or "go", for example). I labelled everything in the house and we would walk around reading the labels and touching things. I wrote stories about difficult child 3, I included photos of difficult child 3 doing the things I described in the stories and then put it all together in photo albums (easy for little fingers to turn the pages).

    That's what worked for us.

    Never forget - once they realise there is more for them to have fun with, they will work intensely, as much as they can and with determination, to learn how to be like other people. Keep encouraging them, they need all the help and support they can get. They need to see that you are their support and not their obstacle. As thye begin to understand more, you will be able to explain your reasoning to them more. At the moment, 3 is a horrible age for you. Their lack of good comprehension only makes it worse.

    Language is really important. It doesn't always invovle the spoken word - communication is the first viral step. Once you have communication, you work towards understanding of language in whatever form. Reading is also comunication. So is sign language. So is using Compics (something you might want to investigate - search online, ask a specch therapist for help there).

    Your difficulties right now are aggravated by having twins - they will rely on each other a lot, and they both need to learn to look to you. So I strongly recommend you enter THEIR world, in order to slowely engage them and draw them into yours.

    Two books for you -

    1) "The Explosive Child" by Ross Greene - it's almost a bible for a lot of us, dealing with the behavioural problems and ODD-type behaviours you can get in children for all sorts of reasons. It's a different way of teaching your child to interact appropriately. Look on the Early Childhood forum for some discussion on applying the techniques in this book, to smaller children.

    2) "Son Rise" - I can't remember the author, it was a librarian at difficult child 3's current school (correspondence but mainstream, he's doing well) who put me on to this book. I could have done with it when difficult child 3 was tiny. Now, I could write the book myself. I did feel there was a lot of emotional over-the-top glurge (almost) at times in the book, but it thoroughly redeems itself for me by going into details of exactly what the father did, to get through to his son. And how spectacularly successful he was. That detail is gold, it is what you need, right now, in duplicate. You also need time (yours) and support (someone to cook your meals and clean your house while you're on the floor 'playing' with your kids; others to come play with your kids too. College kids are good, according to this book. A volunteer register. Kids love to play).

    if your boys are high-functioning, they will learn to talk better. If they are already naming their favourite things, thatis really good news. They wuill continue to make progress, especially if you work them. As twins they will rely on each other and understand one another much better; some of this is normal twin behaviour and sometimes can be misinterpreted as language delay; but if they get frustrated with themsleves for not being able to make YOU understand, then there is a problem needing intervention (speech pathology, again).

    We didn't have the help we needed when we reallywanted it, so I did it myself and invented it myself as I went along.Teaching difficult child 3 to read was his breakthrough. He still watches TV with subtitles on where possible, because it helps him understand it better. However, his hearing is perfect. But his comprehension of what he hears is not as good as his comprehension of what he sees. By combining both, it's worknig to always improve him.

    My son now tests out as normal, for speech, in every area. However, a more thorough assessment shows that he has a wide gap beween his best areas and his worst. These will always mean he will feel frustrated with himself and also have trouble with fast recall and word-finding skills. The language delay is the reason for the ongoing word-finding difficulties. There are eercises we can do to help here, but nothing can replace the sheer brilliance of the infant mindwhen it comes to making new connections between every new word, every new expereince, sensation - the lot. The delay means it's an older brain trying to do the work of the infant brain and although it does it well and can later on pass as normal, there will always be some slight slowness of recall at times. This can be compensated for a great deal in the more highly intelligent Aspies & autistics and often only the person themselves really is aware of it. Again, we found a cute way of trying to help there - the 20Q game. It's a hand-held game, also a website. But your boys need to be a bit more verbal than they are (and able to read!) before they can play this. We bought one for difficult child 3 about 4 years ago while we were on holiday. Then we bought one for his speech pathologist, we felt it was so appropriate!

    I could go on and on, suffice it to say - help is here, in so many ways. help is in a lot of places. So many of us have been where you are now (in a way - I didn't have twins, although I have multiple children with this).

    One last suggestion - how is it when you go out as a family? Do they wander, or stay with you?

    A friend of mine makes harnesses for twins, but she's not selling to the US. You could make something yourself, it's simply a standard harness (five point racing harness) with a clip at the back on the waistband. THis clips to a longer length of webbing (on each child) which then clips to a single leash. When you need to fasten them into a high-chair or a stroller, you don't remove the harness, you simply clip the harness to the stroller or to the high chair. Or the shopping trolley. It makes for less fussing.

    The woman who invented this, was herself physically disabled and not able to chase after her boys. And from what I know of these boys (now adults) - I reckon at least one is Aspie. No language delay, but boy, were they terrors and Houdinis! They lived near water in the Aussie bush and the boys would often run & hide in the bush where their mother couldn't go searching.

    If you can, get your wife to post here/lurk here too, it will really make a huge difference to your communicartion as a couple even if you think it's already perfect. it's what husband & I now do (hi, honey!) and it really helps us a great deal.

    Welcome. Help is here, it WILL get better. You will discover the absolute, wonderful joy in your sons' uniquenesses and in their brilliance. It is there, trust me.

  6. midwestdad

    midwestdad Lost

    Thanks for the helpful replies! I've got to get used to the abbreviations. I thought "AS" was Autism Spectrum, not Aspie. They are definitely NOT Aspie kids. They were diagnosed mild-to-moderate Autism at 4. They have been evaluated by a number of NeuroPsychs over the past few years, with varying results. We've been on a number of different medications over the years - the atypical anti-psychs worked really well for a while, although we did have some dyskinesia issues. Stims have worked REALLY well, but it's ugly with a capital UG when they come down each night. We've tried some of the other stims that are supposed to be better with that (like Concerta) and they weren't effective.

    They have also been getting PT/Occupational Therapist (OT)/ST in school for the past several years. The school district we're in has been very good about that, with well-qualified therapists, and we have been supplementing that with private therapy as well.

    Marguerite made an excellent point about not worrying too much about which alphabet soup is applied to any difficult child, just treat it all as symptomology of their disorder and move on from there. Generally, I am very much in that camp. The reason that I think it might be important is that their behavior issues have trumped any other learning. You had asked what they are like when we're out in the community. I can't answer that, because we can't take them out in the community, ever. Even at school, interactions with their peers are only with very close and careful supervision. Even with that, one of my difficult children got out of reach of his aide for a second and bit a classmate last year. If we can't get that behavior under control somehow, communication won't matter.

    Also, I don't think the outbursts are communication-related. I've been doing more observation and it seems to me that their outbursts aren't that they can't communicate what they want. It's more that they've communicated it and don't like the response. I got a door slammed at me this morning after asking my difficult child to come with me to get his shower. He understood fine what the message was and communicated very clearly his opinion on the subject. And it's not that he doesn't like showers, or it's a sensory thing - generally, he loves his showers. He just didn't like the expectation. It's gotten to be that with everything in his day, just one knock-down fight after another.

    We're off to another meeting with the docs tomorrow, but if anyone out there has any ideas on the stimulant bounce-back, that'd be welcome as well. Thanks also for the book ideas - I've been looking for reading material, and haven't found anything yet that's been very helpful.
  7. Marguerite

    Marguerite Active Member

    You're already making really effective obaervations. Now it's time to be careful and flexible in interpretation. And do make sure you're keeping it written down, because no matter how vital it is so you thinnk you will never forget - you do, ebcause ther's just so much of it. When you go back and read it over, several years later, that's when you can feel encouraged at progress they've made.

    Communication is two-way. it's not just them telling you what they want, it's also them getting what they want as a reward for them getting ti right. And if they don't get what they want, then they feel they have failed to communicate.

    Of course, we can't always have what we want. And you undoubtedly have your good parental reasons for not giving them what they want. But they aren't understanding this, and this is another fragment of the communication process.

    Reward works brilliantly; punishment works far less, especially with Autism Spectrum Disorders (ASD) kids like ours. Autism Spectrum Disorders (ASD) = Autism Spectrum Disorder; AS = Asperger's Syndrome. Both are also part of the Pervasive Developmental Disorder (PDD) spectrum - Pervasive Developmental Disorder.

    Stimulabts - what you are describing sounds to be like rebound, it's nasty. We got this on ritalin with difficult child 1, then when we recently tried difficult child 3 on Concerta (thinking that the long-acting nature of it would prevent rebound) we found rebound, again. difficult child 1 chose to not try Concerta because he remembered the problems of rebound.

    What our boys take (and our middle girl, easy child 2/difficult child 2, a borderline Aspie, we're certain) is a sustained release form of dexamphetamine, another stimulant. It's privately compounded by a compounding pharmacy. We get no rebound on dex. However, that's not necessarily saying dex is better - it is for some kids, but for others ritalin is better and dex gives rebound.

    We also tried Strattera recently with difficult child 3, it was a disaster. It is very much an individual thing.

    Rebound - it feels like all the difficult behaviours which have been kept at bay all day, have suddenly all rushed in and slammed into you at once. Nasty stuff.

    Evenings are also always going to be much worse. Task-changing (or transition problems) will be a major cause of your evening fights, I'll bet. Again - go read the sticky in the Early Childhood forum.

    I've got to dash - we're heading out to get difficult child 3's latest neuropsychologist results.

    Talk later. You've got plenty to be going on with!