Possible Asperg., ODD, Sensory Integration Disorder (SID)

Discussion in 'General Parenting' started by BTCM, Mar 3, 2007.

  1. BTCM

    BTCM New Member

    Hello, I am new here and trying to memorize all of you terminology. This seems like a wonderful sight and makes me feel so unalone already. My difficult child (son) is 8y/o. When he was 3 I started realizing he was a little different than his peers. I was reading a mag. article about asperg. (never heard of it prior). Tears just started rolling down, because it sounded so much like him. He started nursery school at 3 y/o and immediately had difficulties. Didn't want to part from me and had difficulties with carpet time and other aspects. They called someone in from the board of ed for an evaluation. She suspected asperg., because of his rigidity and no eye contact among other things. We had him formally evaled at age 4, although he met some of the characteristics he didn't meet them all. They did point out some sensory issues. Had that evaluated and got him some Occupational Therapist (OT). But was never formally diagnosed again. To make the rest of the story shorter, we've had different struggles throughout time. And finally a month ago we started seeing a phsycologist. He sees characteristics of asperg. Sensory Integration Disorder (SID), and odd. He said there is so much going on that it is too soon to point the finger in one direction. I feel like everything has come to a head with my difficult child and things are getting worse especially at home, but also in school. He is very defiant and targets me for everything. He can't take resposibility for any of his actions. Can't handle change. Basically can only see his own needs and wants. I am hoping someone can tell me where and how their process started and where I should go from here. Some how seeing this phsycologist has made him feel a more sense of power. I just feel so defeted right now. Any feedback would be appreciated. I really want to try to get things going in a better direction. Thank, BTCM
  2. tiredmommy

    tiredmommy Site Moderator

    Hi and welcome. I'm going to move this post over to our General forum, please look for responses there.
  3. busywend

    busywend Well-Known Member Staff Member

    Welcome, BTCM!! I am glad you found us. I know it is all overwhelming. Remember to take some time for you! You will be better for your difficult child if you are healthy and get a break now and then.

    Is your difficult child taking any medications?
    What about an IEP at school?

    What is the psychiatrist suggesting to get you through the bad times?
  4. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Aspergers kids can seem very self-absorbed because many just don't "get" people and are more interested in thier obessive interests than people. Aspergers is severe social cluelessness and I would try to get him preventative interventions YESTERDAY because the older he is when he starts, the harder it is for him to assimilate them. My son didn't meet all the criteria for Aspergers so he was diagnosed with Pervasive Developmental Disorder (PDD)-not otherwise specified or atypical autism, and he has made leaps and bounds strides. Aspie/Pervasive Developmental Disorder (PDD)-not otherwise specified kids can't help having trouble with transitions, but interventions can help them. They do not respond to "typical" discipline or therapy and medications won't solve the problem. Many are extremely bright, but puzzle us because they are quirky and often don't "get" life kills as well as not "getting" social skills. I'm going to post a good site about Aspergers. I'm assuming he had no speech delay. A Spectrum kid with no speech delay is given an Asperger's diagnosis. while one with one, who is still high functioning, is given Pervasive Developmental Disorder (PDD)-not otherwise specified. My son had sensory issues up the ole wazoo, but he has had so much help that much of that has been resolved. He is no longer any sort of behavior problem. It is hard to get a firm Aspergers diagnosis. in a kid who is younger. Go with your gut and, if you suspect it, get interventions anyways and treat him in the special way Autism Spectrum Disorders (ASD) kids need to be treated because approaching them with traditional parenting methods doesn't work. Good luck. Here is, in my opinion, the best Aspergers site on the internet. I recommend he see a neuropsychologist, not a regular psychologist, for intensive testing and recommendations. My son had twelve hours of intensive testing in two hour increments. You can't just look at a child and say "Aspergers." It requires careful attention and many performance level tests plus observation. ODD (or it seems like ODD because the kids want things a certain way and freak if they are different, and also because they can't transition well) and Sensory Integration Disorder (SID) are both often parts of the Spectrum--not separate from it.
  5. jodyice

    jodyice New Member

    Hi and welcome BCTM.
    You'll find a wealth of information here, glad you found us.
  6. TerryJ2

    TerryJ2 Well-Known Member

    Hi, sounds like you and your difficult child fit right in here! Welcome. Here's a cup of tea.
  7. Liahona

    Liahona Active Member

    Welcome, I started get difficult child 2 diagnosis with my peditrician. (Who told me there is no way difficult child 2 is on the autism spectrum.) He refered me to early intervention. They set up some interventions. Then I contacted the autism specialist for the county Mental Health services. Because I felt the early intervention just wasn't getting to the root of the problem. She isn't going to give him a formal test until 30 months because of the language growth between 27 and 30 months. She did start seeing him once a week because if he is autistic the earlier interventions start the better. After going once a week for at least a month she told me he is autistic. We're still going to have the formal testing done at 30 months. After we started going to the autism specialist the early intervention people agreed to put difficult child 2 into social skills classes (formal and informal) and he is on a waiting list for an autism preschool. difficult child 2 has made some wonderful progress. His head banging has stopped and he has started talking. Actually, its a very pained one word yell of what he wants, but its alot better than the screaming. He does still scream sometimes because I just can't mind read. After the autism specialist formal test I was thinking of going to a developmental pediatrican. But I'm wondering if it might be overkill. As long as difficult child 2 is getting the help he needs I'm happy.

    Welcome to the board.
  8. BTCM

    BTCM New Member

    Hello everyone thank you for all of the wonderful responses. I'm not sure if I'm using the correct terminology. He is my bio son. What does difficult child stand for? Well anyways he is not on any medications and we have had EIP's in school a couple of times. They don't really seem to get anywhere. The phsycologist is willing to go in and speak with the school. But I was kind of waiting on a diagnosis. Does it usually take a long time? He says there is so much going on that it may take a while before he puts his finger on it. I am interested in a neuro phsycologist. I never even knew there was a such thing. I feel like we've been on such a roller coaster ride with him. But this yr he's gotten extremely difficult. Especially for me. He is very intellegent and munipulative. He wants to be in complete control of every situation. I just feel like the phsycologist gives suggestions. But I guess I am looking for the all mighty quick fix. Well please keep the suggestions coming. They are very much appreciated. BTCM
  9. Liahona

    Liahona Active Member

    lol difficult child stands for gift from god. Not everyone goes my route. The general consense here is to get a multidisciplanary evaluation from a children's hospital. That way you get all the doctors together to brainstorm and do some very extensive testing all at once. I think this is a better way to go; I just can't do it that way. Our phsycologist (therapist) isn't qualified to make the diagnosis my sons need. difficult child 1 was diagnosis by a pysciatrist (psychiatrist).

    I'm sorry but even with a correct and compelet diagnosis there is no quick fix. Most of our kids are learning things (hopefully learning things) now that they will use all their life. They can't be fixed. My difficult child 1 will be on medications his whole life and difficult child 2 will be different than everyone else. BUT with enough interventions and if they choose to they can have a happy wonderful life.
  10. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    High functioning autism is often missed. It has only been uncovered the last ten years so that when my son went for an evaluation, they missed it in him and said things like "he's too friendly" "his eye contact is too good" blah blah blah. I saw the autism in him, why didn't they? Sure, he's higher functioning, but at 13, it's still there. Due to getting help as early as infancy (he was a foster child before we adopted him) he is doing GREAT! The earlier you intervene the better and a psycologist isn't the answer, in my opinion. They can't really help young spectrum kids because they don't relate well to people and they think differently than "typical" kids. They need social skills, life skills, often Occupational Therapist (OT), PT, even if bright they also often need Special Education or an aide to help them transition, and Autism Spectrum Disorders (ASD) is the one disorder where the kids can drastically improve. medications dont help Autism Spectrum Disorders (ASD). They can help co-morbid diagnoses or sometimes anger issues. My son outgrew his anger issues as he became more flexible and able to communicate well. He is still quirky, but he's a lot happier. I recommend a neuropsychologist over a MDE if looking for a neurological problem. We had an MDE and they missed the boat. They just didn't do the type of testing the neuropsychologist did. And I had to fight harder for interventions since we had no diagnosis until he was---ready?---11!!!! He is now dxd. with Pervasive Developmental Disorder (PDD)-not otherwise specified and I know it's a correct diagnosis. Before that he was on thirteen medications that he didn't need (or around thirteen, could be ten, could be fifteen), and had wrong diagnosis. of ADHD and bipolar. And, no, it isn't easy to diagnose a younger child and often requires perseverence and going with your mom gut. I wish I had. My son would never have been on--here's the laundry list as I best remember--Ritalin, Adderrall, Concerta, Dexadrine, Zyprexa, Risperdal, Depakote, Lithium, Seroquel, Topomax, Trileptal, Metaforum (because he gained fifty pounds--it didn't help)...ok, so guess it's around ten medications. At any rate, he's been off medications for three years now and is doing MUCH better. medications are good for some things, but it won't help Autism Spectrum Disorders (ASD). About 50% of all Autism Spectrum Disorders (ASD) kids are medication free, but they desperately need school and community interventions and the parents need to understand how to deal with these atypical children.

    You can find NeuroPsychs at university and children's hospitals. I found one who had worked at Mayo. HE WAS GREAT!
  11. TerryJ2

    TerryJ2 Well-Known Member

    I'm reading this with-interest because my difficult child is still not totally diagnosis'd. We've got an appointment tomorrow with-the child psychiatric, and an appointment with-a neurologist who spec in psychiatry for the Aspberger's in April.
    I have friends whose kids are Aspies and they are all doing very well. It's amazing and gives me hope.
    Thanks for opening up a good topic, BC. Let us know how it goes.
  12. Marguerite

    Marguerite Active Member

    For those who feel their kid fits Asperger's or Pervasive Developmental Disorder (PDD) in some form but who haven't got a formal diagnosis, my strong recommendation is to start treating it as if it's Asperger's and go from there. You don't need a label to begin to help your child. Also, if this turns out to be the correct diagnosis (diagnosis) later on, starting to help him now is the best thing to do. Plus, these kids seem to know and seek out what helps them the best, in my experience.

    difficult child 1 wasn't formally diagnosed until he was 15, even though I suspected autism in some form when he was 6. Diagnosis is very subjective, you have to keep asking questions and insisting on answers and even then, you can get the wrong answers.

    My advice - meet the child where he is, in terms of what he enjoys and feels relaxed with. Find what helps and calms him, and use it to help him. Use his high skill areas and special interests to support areas he has more difficulty with.

    An example from difficult child 3 - he is hyperlexic, meaning he was a very early reader with a fascination for letters and numbers but not an understanding to match. We used words written down to teach him information about himself, and to teach him basic communication. We still use maths to help him calm down when he's stressed - he begins his school day with a computer maths session. We wrote "social stories" for him and read them aloud to him as well as encouraged him to read aloud to us. It didn't matter if he was memorising them - it meant he was learning what was written.

    We wrote two types of things for him - stories about himself, and mini-word-books.

    The stories about him - we composed them on the computer. "My name is difficult child 3. I'm a boy. I like to climb trees. I live at [our address] and my phone number is [our phone number]." We then wrote about his daily routine and added photographs as well, to help him better understand what we were writing. When we printed the pages we put them in a plastic-sleeved photo album which was easier for him to turn the pages.

    The mini-word-books - take a sheet of paper from the printer and fold it in half. Turn and fold again. Then turn and fold again. One more time then staple down one side. Cover the staples with sticky tape (for safety) then cut the pages loose. You should have 16 leaves in the mini-book, which makes 32 pages. Draw his picture on the front, write his name. Inside you write the words he needs and uses (one word per page, preferably) and also draw a picture. This was especially useful to teach difficult child 3 to communicate, because until then he had no language. He would babble and he could repeat, but with no concept of meaning. The pictures made the difference. Plus, we would practice the words. For example, one word was "stop". I drew stop lights with the top one clearly glowing red (red rays coming out of it). I would point to a stop light and say, "the cars are stopped." Or just "stop". Or we would be walking along, I would open the book and say, "stop!" and we would immediately stop. We coupled it with "go" so we did that word the same way, to begin walking again. he quickly got the idea and joined in the game.
    Even if a kid has normal language development, this can help with increasing understanding and giving them a head start with reading. Even though difficult child 3 is now highly verbal and an assessment shows him to be well within normal range, he still understands best when it's written down. He prefers to watch TV with subtitles on because he understands better. his hearing is brilliant, so it's not related to any hearing deficit - he just takes it in better when it's written down.

    It's connected to the Obsessive Compulsive Disorder (OCD) component of autism, this need in him for the written word. So we have worked with it and used it to open doors for him. We did this before he was diagnosed; I even had a speech therapist early on tell me to not let him read. "How do I stop him?" I asked her. I was only using a tool he had shown me already. Since then another speech therapist told me we did the right thing. From a kid who was non-verbal and with significant language delay, we now have a kid managing a mainstream academic curriculum brilliantly, topping his class in some subjects. Socially he can't attend mainstream but he is doing well socially in general interactions. it's only when large groups of kids are together that he doesn't cope too well.

    Chances are your son is less impaired than difficult child 3 (if you're only looking at Asperger's, and they're arguing about whether he has enough for a diagnosis). But it always boils down to how YOU cope, what HIS needs are and how you meet them. Give him the time and space he needs and don't push him harder than he can cope. He will take longer to reach a lot of milestones, but he WILL get there. For example, difficult child 1 had teachers who wouldn't help him by writing his homework down for him - he had to do it himself. As a result, his homework wasn't getting written down. They said he was old enough to take on that level of personal responsibility, but he wasn't. He still needs some help, but far less than even a year ago. easy child 2/difficult child 2, on the other hand, still needs a lot more support there than I would have expected in her.

    Forget their age, forget the calendar, just give them what they want academically when they want it and as they can handle it. This can mean, let them have it early if they want. difficult child 3 is currently enjoying a TV series for senior high school students, on organic chemistry. And he's understanding it. Meanwhile his class work is still stuck on, "this is an atom," while he's learning about carbon bonds in alkanes, alkenes, alkynes and benzene. And this is the boy who, we were told, was "borderline" [retarded] and would never be able to cope with a normal school curriculum.

    Be prepared to have to break the rules if your instincts tell you to, for your son. If you try something and it works, do it. If you're told to do something and it doesn't work, then seriously argue to be allowed to drop it. Or at least, to modify it so it DOES work.

    Good luck, and enjoy your child. You have a precious gift.

    by the way, if you want to look at the Pervasive Developmental Disorder (PDD) angle yourself, there is an unofficial questionnaire on http://www.childbrain.com for Pervasive Developmental Disorder (PDD) (sort of an umbrella which includes various forms of autism including Asperger's). You can print the results you get and take them to a specialist for their official opinion. And if you want to be sure you're answering the questions correctly, they even have a guide to help you with that as well.

    Good luck, keep us posted.

  13. TerryJ2

    TerryJ2 Well-Known Member

    Wow, Marg, great note. And good job with-your kids!
  14. 'Chelle

    'Chelle Active Member

    Marguerite's post is a good one. Do the questionaire she suggested, it can be helpful. My difficult child just misses aspergers by a couple criteria, but he is definitely on the spectrum. From all the reading I've done, before we got the official diagnosis our difficult child's therapist was working with him from an autism spectrum standpoint. A lot of social skills type stuff. Even without a diagnosis, as Marguerite said, treat it as such as the interventions can be helpful without the "label".

    I would suggest trying to find a psychiatrist or neuro-psychiatric specializing in developmental disorders. I think that sometimes if they don't have 100% of the criteria that sometimes it's dismissed, but it's a broad spectrum.