new aspergers diagnosis, I'm not ready to deal

Discussion in 'General Parenting' started by halana75, Apr 20, 2009.

  1. halana75

    halana75 New Member

    My 9 year old son was re-evaluated last week so we could start medication to help with his ODD.
    His first evaluation was at age 3, diagnosed Pervasive Developmental Disorder (PDD)-not otherwise specified, mild Obsessive Compulsive Disorder (OCD), and ODD. When he was 7 he had several surgeries to correct sinus issues along with having his tonsils and adenoids removed. He was on a heart monitor loop and diagnosed with precordial catch syndrome and a slight heart murmur. He continued to have staph infection after infection because he would rub his hands and legs raw then constantly pick.
    I refused to medicate him for is disorders until January 2008 when he was diagnosed with then I figured that I was doing a disservice to him by not medicating.
    He has an IEP team and plan at school, a 504 plan for testing and has speech services to deal with fluency issues. He is an honor roll student despite his disruptive behavior but we are concerned without having something more concrete in his records that as he gets into middle school he will be kicked out.
    At home in the meantime, life has been hell. His behavior has been increasingly aggressive and he busted my husbands lip open in a fit a few weeks back.
    When I took him to be re-evaluated I expected them to confirm his prior diagnosis'. They did but they are now diagnosing ASPERGERS.
    I am heart broken. I don't feel like I'm ready to deal with this yet.
    We did get him started on abilify.
    I feel alone in researching this, my husband (his step-father) calls this ***-munchers disease. My sons biological father is abusive, refuses to be involved in anything that isn't fun, and he only sees son 3 times per year because he lives in a different state. I have 4 other children that need attention too and I feel drained after having to deal with my 9 year old.
    I don't know where to start when it comes to finding I feel so overwhelmed.
  2. nvts

    nvts Active Member

    Hi! Welcome to the crowd! Let me help you deal. There are far worse things that you could have been diagnosed with than Aspergers. You were dealing with ODD and ADHD which doesn't give you any sense as to how to deal with him. Now you have a name for his issues and will be able to fine tune what you're researching.

    True, it's "scary" when you get a diagnosis., but it's also enlightening. Now there's a name to what you're dealing with. I would recommend that you take a look at the link below:

    They have chat rooms/forums with a number of "types" of members (parents of aspies, adult aspies, kid forums for your son to eventually chat with) that are very open to discussion.

    Think of it this way - you've been dealing with this child for years and it's never gotten better - consider with a real diagnosis, you may be ready to deal with the potential that he actually has as opposed to just trying to head him off at the pass.

    Come here often. Read a lot. Post a lot. We're here with the fun, the sad, the heartbreaking and the joyful.

    Again, welcome to the crew (gotta go put my 3 chuckleheads to bed!).

  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi there. I'm sorry you're so upset. Not all, or even most, kids with Aspergers are violent. Maybe it's because he hasn't had interventions, and he is very frustrated. THAT can happen. Was he ever given interventions in school? My son is on the spectrum and, to be honest, I think he's the best kid on earth and wouldn't change him for anything. He's doing really well. Aspergers isn't a death sentence by any means. On the other hand...

    Who diagnosed him? Has he ever seen a neuropsychologist? What sort of issues are on both sides of his genetic family tree? Sometimes Pervasive Developmental Disorder (PDD) is comorbid with other disorders and the violence sounds like it could be something else besides just Aspergers. There ARE Aspies who get that violent, but I'd want him completely evaluated by a neuropsychologist. in my opinion they do the very best, most thorough testing and can then give you accurate results so that you can seek out help. For Aspergers most of that help is in school if you live in the US. My son is where he is today because of wonderful help from school (he did start in early intervention though--did your son ever have interventions when he was, say, three years old?)

    What are his strengths and weaknesses and what sets him off? Does he freak out at transitions? Overstimulation? Being told to stop doing something before he has finished?

    Your son is the same exact child he was before he got the label. The label has opened up doors for him to get help. If you have an Autism Society near you, I'd call them up and join a group. The parents are usually very helpful.

    Once he is re-evaluated and in good interventions I think you'll see a huge improvement. He may need a special class in school, but it's worth it in the end.

    Welcome to the board :D
  4. helpangel

    helpangel Active Member

    hi I wouldn't get too hung up on diagnoses some would say after reading your post the Asperger's isn't a new diagnosis its just a better description then not otherwise specified on the Pervasive Developmental Disorder (PDD) diagnosis. I did get a chuckle out of the term ***munchers disease cause I gotta agree it's a pain in the ***; better then the way I pronounce Asperger's because the way I say it it sounds like something that should come with french fries and a milk shake. With my daughter she has much better success with teachers and such that gear their teaching methods toward things that work with Autistic kids rather then behavior problems. Anyway welcome to the group and keep us posted on how things are going.
  5. nvts

    nvts Active Member

    My nephew (aspie) and my two boys are somewhat musically inclined. My sister and I are going to get them music lessons and help them start their band. We're going to make them call it:

    "Pain in the Aspergers"

    Huge bucks. I'll finally be kept in the manner to which I plan to become accustomed!


    PS: Your aspie sounds like my difficult child 1. He would have been waaaay more violent if we hadn't got the diagnosis so soon. He can be a truly nasty little bugger. But the more intervention (a lot of hidden sensory issues) we manage to get, the less violent the outbursts have been.
  6. Auntie

    Auntie New Member

    My son has aspergers.

    My son is most likely to have a fit of temper when he is "stuck". Things are changing too fast, he cannot cope, so he has a melt down. It is his way and he will hear of NOTHING else!

    I do not know what works with ODD, but, with my son it helps a bit to work on his coping skills. He still gets "stuck" and he still has meltdowns, but not as many.

    Also, he CAN use coping skills on LITTLE things, which makes the home life better most of the time.

    I think that you can do more for aspergers than you can for ODD. So perhaps the Docs can give you more help with your son?
  7. susiestar

    susiestar Roll With It

    Welcome!! I know it is a shock, but it truly isn't the end of everything. It really is just a better way to describe what is going on.

    My oldest, Wiz, is an aspie. He was very violent, and a lot of it stemmed from sensory problems and things he was told in school in 1st and 2nd grade by his teachers (they were monsters and will burn in Hades for torturing children).

    There truly IS hope. Right now my Aspie lives with my parents, by my parents' choice (as a last ditch effort before I had the courts send him somewhere due to beating me). In the last 3 years Wiz has become someone I truly ENJOY being with. I always LOVED him, had a very special bond with his because he was my first, but he was very violent. The violence is now gone, largely because any time he started to be violent my dad made him go outside and do yard work with him. They di probably 1000 hours of yard work the first year. Luckily my parents have a BIG yard that was VERY overgrown. (said tongue in cheek).

    Now Wiz is gentle with Jessie, where before he abused her viciously. They have an AWESOME relationship now, she is a gentle soul and they both worked in therapy about it. Wiz is a good big bro to thank you, who is 8 years younger. thank you idolizes him, and Wiz works hard to be a good role model for thank you. Wiz is also good with my niece, who spends a lot of time with my parents and is younger than thank you.

    At one time the only future I could see for Wiz was prison. Now the sky is the limit. He still has aspie issues, and especially sensory issues. But he also is doing well in school as a senior, is doing well in the machinist training program he is in, plans to go full time to training next year and then work as a machinist to put himself through college. He also has his first job carrying groceries at a small grocery store. They LOVE him, customers regularly give him big tips, I hear all sorts of nice things about him when I go in.

    Even better than all of that, he now will hug me. AFter about age 7 he stopped hugging me. One of the vicious teachers made fun of him for it and he just stopped. I cannot tell you how incredible it feels now to have him just sling an arm around me in public! Or at home! He will even, once in a while, give me a kiss on the cheek! (I come from a very affectionate family).

    I strongly, STRONGLY encourage you to get help from an Occupational therapist (Occupational Therapist (OT)) for sensory issues. It really does make a HUGE difference when you use the brushing therapy appropriately. Even on an older kid. It really helped Wiz be able to turn himself around.

    Aspergers is actually a more hopeful diagnosis than Pervasive Developmental Disorder (PDD)-not otherwise specified. It is a much higher level of functioning from what I understand. There are some excellent books about it, and even one in that "Everything about" series, similar to the Dummies series of books. It was recommended by the therapist at one of the short term psychiatric hosps he was in.

    Keep posting here, everyone is great even when you just need a cyber hug!
  8. Marguerite

    Marguerite Active Member

    Welcome to the site. There IS help, there is hope. A lot of the aggression is born of frustration and it's simply a matter of you helping him learn that there are other more effective ways of dealing with frustration.

    There is a lot of help available, we also recommend books here including "The Explosive Child" by Ros Greene. The techniques in that book can actually harness the child's need to control everything around him, and use it to help him learn self-control. We found it was easier to manage him using these techniques and we also could use the same methods on the PCs in the family.

  9. jal

    jal Member

    Hi Halana75 - Welcome!

    My son is also Aspergers. In answer to your question about finding services, see if your state has DCF Voluntary Services. We were told about them but shyed away because of the DCF portion, but eventually we needed more help and they are wonderful. They will be helping us to continue with in home behavior services when our current program wraps up. They also offered us respite (we have yet to use it though). They can help to pay all or a portion of camp in the summer. Check and see in your area if you have a Children Youth and Family Services. We were recommended them when our difficult child came out of psychiatric hospital. Through them we get intensive in home behavior therapy for our son at no cost to us. We are also using the psychiatrist (as our other was out of pocket and wouldn't listen to our thery that difficult child was on the spectrum) and theirs takes our private insurance and we pay a co-pay. Our difficult child is also in a therapeutic school and receives Occupational Therapist (OT) services for his Sensory Processing Disorder. All of these combined with the right medication combo (finally) have helped so much. My difficult child is only 6, but we have been at this for years. He was also violent. Most of that has completely gone away with the interventions and the medication combo has opened the educational doors for him too, he's learning so much at a very fast pace where before he wouldn't even try.

    We had a follow up meeting with-our CM from voluntary services this morning who said to my husband and I that we looked so much less stressed than when we all first met 6 months ago. She was right - so much has gotten better. Good luck to you - but please check for these types of services, they do make a difference.
  10. 'Chelle

    'Chelle Active Member

    Hi Halana. Try not to worry too much about the label, he's still the same child with the same issues. With our difficult child finally getting a diagnosis, the label was a bonus in that you can get the interventions and services that can help our kids succeed. My difficult child was never violent with people, but he could (can) put nice holes in walls and break things like no other. It all stemmed from his frustrations, and not being able, or knowing how, to communicate what he wanted, needed, felt in a situation. Like you, I worried our difficult child wouldn't make it through grade 8. But he has improved leaps and bounds since his diagnosis, and I'm now sure he'll make it through high school graduation.

    Reading anything and everything on Autism Spectrum Disorders (ASD) was where I started, and the book The Explosive Child helped us a lot. Make sure your psychiatrist & therapist specialize in developmental disorders if you can, though I know that child psychiatrists can be few and far between so getting the right one is hard at times. Our psychiatrist is amazing with our difficult child, as it's her specialty ;). Check for your local Autism Society, they will be able to point you in the right direction for services that may be available, and may have support groups you could check in with. Double check your difficult child's IEP to make sure there are interventions and supports specific to his Aspergers needs. For our difficult child, he had a spot he could go when things got overwhelming, and lots of them do for Autism Spectrum Disorders (ASD) kids. The sensory stuff alone can be hard to deal with, let alone trying to interact socially when they may not quite "get it". It was a place he could go to get calm, rather than dealing with it by a meltdown.

    Welcome to the site. :bigsmile: Hope you find the advice, and the ear to vent to when you need it.