Adhd\Sensory Integration Disorder (SID)\odd

[Mamaof5]

My 9 year old is on a waiting list for psychiatric help. He's working with our local family center and Sick Kid's Toronto (Dr. J). He was diagnosis'ed with ADHD\Sensory Integration Disorder (SID) in early childhood years and Dr. J is now saying there is more than that, learning disabled (hard wired due to being 3 months premature), possibly ODD and has impulse and rage control problems.

I'm hearing impaired so micro expressions and body language are everything to me. I use my eyes like you would all use your ears. I watch him when I request politely for a rule to be followed or redirect or ask for him to complete a chore and I see contempt, disgust and anger even when I am politely and respectfully asking for compliance. It doesn't take much to set him off at all. I can just look at him and he goes off. He harps on something, calls me names and physically and verbally abuses me (not so much, though a little bit, with my husband). What makes this more exhausting is there are two other special needs children in the house hold too. I have an autistic 4 year old with severe speech delays and hearing impaired like I am and a cardiac child (3 year old, 2 month preemie).

I'm also disabled, hearing impaired, fibro, myofascal syndrome with chronic costochondritis and MVP (also immuno compromised). I can't physically remove him from a situation. I can see the disgust on his face for me, the disdain and contempt. I see the sadness for being labelled by the schools and friends and the frustration from that. All of it breaks my heart, utterly and wholly. I just don't know what to do for him. He's on waiting lists and I'm scared for him. What more do they want from him, us as a family out there in society?

I hate that people label him, that the school does nothing until a prominent psychiatrist tells them to get off their arses and do something. His mood swings are becoming severe, I think he's also depressed and very angry - rage filled even. Where's that little boy I knew who used to be a clown and could make me laugh even if I wanted to cry - I feel like he hates me and I don't know why he does.

I feel like I'm whining all the time about it, I'm doing the best I can here but I don't think my best is cutting it at all.

 

[slsh]

Hi Mama and welcome! I'm glad you found us.

We all bring our particular biases to the table so take the info you can use and skip the rest. None of us have *the* answer, but there is a fantastic range of experience and opinion on the board so hopefully some tidbit or 2 will click for you. If nothing else, we're great at moral support.

My oldest was a preemie way back in the dark ages. I'm glad to see that you have a dr. who is acknowledging the long term effects of prematurity. I know that Canada has done (is doing still?) an extensive study, gosh it's got to be going 20+ years now, on preemies and their subsequent development. I haven't followed up on it in quite a while (quit once it became obvious that learning disabilities were the least of my preemie's problems), but I seem to recall they came out with an update about 10 years ago, talking about socialization difficulties, behavior problems, as well as Learning Disability (LD)'s that were much more prevalent in preemies as they progressed through school, often popping up long after they expected to see the more "usual" complications of prematurity. It might be something to check out, especially if you're having trouble getting your school to be proactive.

Is your son receiving any services through the school right now?

I also intensely dislike labels, but over the years I learned that they sometimes make obtaining services much easier. While it's incredibly difficult to sit down and read a medical/educational report that sounds like a grocery list of difficulties, I think that those reports tend to be our best allies in terms of getting appropriate services. The label doesn't and never will define your kiddo.

How are his communication skills? Again, just my bias, but in former preemies I tend to wonder about receptive/expressive language skills. An inability to effectively communicate certain is cause for frustration and anger.

How has his development been? Did he hit milestones on time, corrected for gestational age? How does he do with peers? Is there a family history of depression or mood disorders?

You know, none of us expected to have children with- special needs, and you certainly have a ton on your plate. I still have days when I think I must be the most incompetent mother on the earth. But we can only do the best that we can do, try our very hardest, and keep searching for info and supports that will help us be better parents. in my humble opinion, it's okay to whine every once in a while - I think it's even healthy.

Again, welcome and I'm glad you found us.

 

[BusynMember]

Have you had him tested by a neuropsychologist? With his vague diagnosis. (and Learning Disability (LD) and more) I have a feeling he is on the autism spectrum. And if he is, he needs a very special type of help...either for Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers. All his diagnoses strung together sound just like Aspergers. Does he know how to make friends? Can he socialize with his same age peers? Can he hold a give-and-take conversation? Does he make strong eye contact? Does he ever seem "out of it" especially in new places yet seem very with it when he is in familiar places? Does he know how to transition from one activity to another smoothly? Does he have any obsessions?

He is very much like my son.

 

[Mamaof5]

Have you had him tested by a neuropsychologist? With his vague diagnosis. (and Learning Disability (LD) and more) I have a feeling he is on the autism spectrum. And if he is, he needs a very special type of help...either for Pervasive Developmental Disorder (PDD)-not otherwise specified or Aspergers. All his diagnoses strung together sound just like Aspergers. Does he know how to make friends? Can he socialize with his same age peers? Can he hold a give-and-take conversation? Does he make strong eye contact? Does he ever seem "out of it" especially in new places yet seem very with it when he is in familiar places? Does he know how to transition from one activity to another smoothly? Does he have any obsessions?

He is very much like my son.

No NP yet, we're starting with psychiatry first. Sensory Integration Disorder (SID) (sensory integration dysfunction) is on the spectrum but apparently barely so. He makes friends, keeping them is another issue. It's an up and down thing, one moment friends, next enemies. He makes perfect eye contact actually, he'll stare you down if he's angry or raging at you and when he's fine he makes appropo eye contact. His body language indicates he's communicating as well as his extensive vocabulary. He certainly knows how to call me a "b!tch" that's for sure. He has no issues with both familiar and foreign places.

His obsessions are harping on one subject, question asking over and over, oddities like out of the blue asking a question that does not pertain to the conversation (like his mind is making associative connections he has attributed to remembering skills he's developed on his own as coping skills both in school and at home).

He does not trans from one activity to the other all that well, especially at school. He'll give up a task even before he tries it because he is afraid to fail the task (as per my observation and teachers). Organizational skills are nil, homework completion is almost nil and it's a fight to get him to sit either long enough or he does not complete the task and strays from the task multiple times. He needs reminders of the task and to back to it.

While I do believe that his Sensory Integration Disorder (SID) is partly to blame for this (the transitions from one activity to the other, obsessiveness over certain lines of questioning) his ADHD is the end causative of most of the rest of it except the rage and self mutilation issues (pulls his hair out, bites himself, punches himself) the tantrums, defiance issues, impulse control problems can be ADHD but I've seen that ADHD and ODD are co-morbid as well as leading to CP.

I don't believe it's Aspergers or Pervasive Developmental Disorder (PDD)-not otherwise specified - he does not display out right autism symptoms, Sensory Integration Disorder (SID) is debatable as to being on the spectrum (huge controversy over it) and I am in the camp that Sensory Integration Disorder (SID) is more like not otherwise specified - atypical autism spectrum.

Hi Mama and welcome! I'm glad you found us.

We all bring our particular biases to the table so take the info you can use and skip the rest. None of us have *the* answer, but there is a fantastic range of experience and opinion on the board so hopefully some tidbit or 2 will click for you. If nothing else, we're great at moral support.

Is your son receiving any services through the school right now?

How are his communication skills? Again, just my bias, but in former preemies I tend to wonder about receptive/expressive language skills. An inability to effectively communicate certain is cause for frustration and anger.

How has his development been? Did he hit milestones on time, corrected for gestational age? How does he do with peers? Is there a family history of depression or mood disorders?

You know, none of us expected to have children with- special needs, and you certainly have a ton on your plate. I still have days when I think I must be the most incompetent mother on the earth. But we can only do the best that we can do, try our very hardest, and keep searching for info and supports that will help us be better parents. in my humble opinion, it's okay to whine every once in a while - I think it's even healthy.

Again, welcome and I'm glad you found us.

Sorry, I shortened your response to answer the other questions. By any chance you have a link to the Canadian study on preemies? I'd like to peruse that study out of curiosity being that I'm a twice over NICU mom (my youngest was 2 months preemie - 29 weeker and a 33 weeker - oldest and youngest).

The only thing, at this time, is an IEP for my son. However, there is a specialty school in Esp (2 hrs from us) that deals strictly with children like my Big B and Brooklies. I've considered transferring him to that school where he will get his own teacher aide. He apparently "out grew" the reading program at the current school despite them saying he's 2.5 years behind. How can they say he's that behind then say he out grew a program? It's counter productive.

His communication skills are above - he expresses extreme emotions well, very well. He hit his milestones slow at first - rolling at 8 months from back to front and front to back, sitting up at 10 months but milestones for walking (he skipped crawling in any shape or form) were fairly on target at 13\14 months.

Family history - Husband was diagnosis'ed with ADD (no words for ADHD but the suspected proper diagnosis is actually ADHD for my husband). Myself, like my sig says, chronic pain diseases and I do have a history of Pervasive Developmental Disorder (PDD) and Dysteria (seratonin uptake disorder that causes severe clinical depression). I was medicated for 3 years for it (Welbutrin 150mg\day) but for the last 2 yrs have been off medications and doing fine without them. I'm unmedicated for my chronic pain diseases because at the age of 30 "they" tell me I'm too young to be sick despite the medical evidence otherwise (whole other can of insensitive, lacking knowledge worms there).

Small town (less than 10 000 population) with small resources and lacking sorely in doctors\nurses and specialists.

Yes, I never expected to be a special needs mum, but I'm grateful that my children have blessed me with their presence and the privilege of being their mum. They've taught me patience, unconditional love, perseverance, to be better than I am or was and that I can be something and someone more than I could ever imagine I could be. It's just trying at times *lol* Thank you for the support, it helps to know I'm not uniquely alone, that I'm (unfortunately) not the only one. If I could wish one thing, it would be that all our children not have to suffer so profoundly like they do.

 

[Robinboots]

My daughter was a preemie, and all caught up by 6 months, developmentally. Being a preemie is not an automatic lifelong disadvantage; most kids catch up pretty quickly. She was, however, diagnosis with ADD - no hyperactvitiy on her part, and she's still kind of a slug at 23! She, too, had difficulty transitioning from one activity to another, so I simply started giving her notice - not much, but consistently, as in "Liz, in 5 minutes you need to start picking up toys." And in 5 minutes, I'd tell her "now, it's time to pick up toys."

Her pediatrician also recommended a book on "difficult children" and I read and followed pretty much all of it. The notification, the routine, and so forth. Routine is very, very important to many difficult children, for different reasons.

 

[Mamaof5]

My daughter was a preemie, and all caught up by 6 months, developmentally. Being a preemie is not an automatic lifelong disadvantage; most kids catch up pretty quickly. She was, however, diagnosis with ADD - no hyperactvitiy on her part, and she's still kind of a slug at 23! She, too, had difficulty transitioning from one activity to another, so I simply started giving her notice - not much, but consistently, as in "Liz, in 5 minutes you need to start picking up toys." And in 5 minutes, I'd tell her "now, it's time to pick up toys."

Her pediatrician also recommended a book on "difficult children" and I read and followed pretty much all of it. The notification, the routine, and so forth. Routine is very, very important to many difficult children, for different reasons.

I agree with you that not all preemies walk away with lasting effects. Though I seem to be 2 for 0 for my two preemies. The PDA for my 2 month preemie (33 weeker) was a direct result of his prematurity though most PDA\LDA issues can happen to full term as well as pre term. My oldest got lucky at 29 weeks, could have been a lot worse off for him born that young gestation wise. Most don't get out after only 5 weeks in the NICU and most don't come off the resp after only 9 hours (of course with help of medical technology though like steroidal shots and liquids that force hyper development of infantile lungs - though that type of allopathic medicine comes with very dangerous side effects that we also got lucky and avoided as well).

I do believe in routine and they have (all my kids) a very strict routine actually. Some kids need more than that though, as it seems both Big B and Brooklies need more than just strict routine. The other three do well with that strict routine but the other two tend to stray from it or it works for weeks and stops working and has to be changed up a bit to correct the stray from the routine. Thank you for your input Robin.