Newbie. Need help ASAP. Long.

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Hi. New here. I've spent a bit of time browsing the forums, and this looks like a very supportive place.

I'm hoping that someone can either help me directly, point me in a good direction or just tell me I'm not nuts for trying to get to the bottom of a long-standing family mystery which has slowly thrown a shadow over all of us, and now seems to be threatening the emotional lives of my two youngest boys.

I'm a 40something mom of 3 boys (ranging 11-18yo), who has wondered for years what was "up" with my spouse, or what was wrong with me that I constantly miscommunicated with him, why I could never figure it out and why could he rattle off trivial details of cars, and the dates we paid taxes on cars we owned 5 years prior, but couldn't remember the most recent events in our household, not to mention build things (structures) out of his head without blueprints

When the older boys came along, the focus shifted to them, and while they all exhibited signs of hyperactivity, sleep issues, colic, almost from day one and then both of them walking (never crawling) at 9 and 8 1/2 months, all of that was swallowed up and forgotten the day my youngest was diagnosed with severe Hemophilia A, and two months later his body started to reject his clotting factor.

Life was a roller coaster on spin cycle from that point on. The older boys had a very hard time concentrating on school with their baby brother regularly running back and forth to the ER and nobody knew when it would happen next. They were school age by then, and started to get into trouble, and we dealt with it as best we could, but never dreamed that what was going on might not "only" be the stress of dealing with their brother's situation, given the fact that they had issues way before he was born.

The years passed, and the oldest just kept getting into trouble in school and out and nothing we did or didn't do seemed to help, even with counseling, etc. He could never see the point of rules, or see past the moment. He is now almost done with high school, but has given up completely on any further education. He is starting to calm down a little now that it's almost over.

The middle son had the worst time from 1st grade on. He would sit under the desk for long periods of time. He would be very hyper. At home though, he would pull out books and look at them and try to read. He left 1st grade not knowing how to read. We moved to a new school district and, at first, they pulled out all the stops to bring him up to speed. He did very well in a "special class" for 2nd grade, but that's not how it was officially described and I didn't think anything of it until he was put in a 3rd grade mainstream class and then the stomachaches and nightmares began, the big time insomnia and the meltdowns. I communicated with the school about all of this behavior and said I was concerned, was everything all right in school, and I was constantly told he was "fine".

I ended up pulling him out to homeschool him, if nothing else for his sanity's sake. I knew nothing at the time of special ed/disability laws or even what to do. He was finally diagnosed with ADHD at 11yo, or thereabouts together WITH an unspecified "processing disorder" particularly with writing AND difficulties with working memory. We started him on ADHD meds which helped right away. It took time to find one that worked the best. But even that didn't seem to cover it.

However, no one asked me about the sleep issues, the hyper sensitivity to noises, and almost supernatural sensitivity to people's moods in a room. No one asked me about the constant chewing on anything and everything, edible or non-edible. Nobody asked me about his occasional head-banging, which he still does to this day, and he tells me he can't really feel it. The fact that he had trouble tracking when reading was addressed with vision therapy, but didn't seem to help him at all. He is always very stressed out by unexpected change, even good change. He is wrung out at the end of a regular day. He loves people, but is constantly offended and doesn't "get" what "their" problem is. That's a constant battle. But nobody asked me, and I didn't know it was part of the picture.

I just thought he was stressed and Just a boy, and I was a stressed out, bad parent. I was thrilled to receive "something" to go back to the school district with and ask for their help. They were most inviting when I asked for a meeting to discuss his learning issues, and then proceeded to put my withdrawal letter in front of me the moment I sat down at the table. They told me they didn't have to test him because of a lack of instruction. I could have put at least 50-100 pounds of curriculum in front of them at that moment, but I was so stunned and dismayed that I sat there like an idiot, stuttering and couldn't put two thoughts together to adequately respond. Well, I walked out of there and didn't look back, but when it came time for high school, he had to go back as I could not homeschool anymore. He had troubles all through those years, but I worked around them as best as I could. I sent him for professional tutoring at significant expense, but had to stop because of the cost.

When I enrolled him at the local high school in 2008, I provided a copy of the testing, as well as a detailed history of his educational, emotional and family history. I requested a meeting for special ed, but was denied based on the theory that, of course he was behind since I had homeschooled him for several years prior and the school preferred to put him in a FLEX schedule with lots of support and a 504 plan and take it from there.
He did very well for the most part. It was like deja vu. Then this fall, without officially notifying us, they took all the supports away, put him all mainstream classes, cut his study halls in half and took away his 504 plan since they said "he didn't need support" because he got B honors the first marking period. What they failed to recognize, and because we were caught off guard and couldn't adequately respond to, is that his stress levels started going up from the first couple of weeks of school, ranging from complaints to punching walls, to fits of frustration that would boil over and he would run away. I repeatedly communicated his increasing levels of stress to his homeroom teacher, and also requested that she help him with organization/memory issues since those were the most complained about issues, after noise, note-taking and constant stress in the classroom.

"He's fine", she kept telling me. Until the day that he was exceptionally rude to a teacher. She contacted me about it. Before I could speak to him about it, he told me everything and said he was sad because he didn't want to let me and his father down. He said he couldn't remember anything, that he couldn't take notes and listen at the same time. So, he started getting into trouble from there. His psych diagnosed him with depression and he started one med, and then added another, both very low dose and we are now in the process of having him tested for special ed. It's very difficult for him to go to school, but home is more difficult for him he says, because his mind just starts to go and go at bedtime, and he has too much time to think. He gets really depressed and frustrated, unable to shut off his thoughts.

After much research, I came across sensory integration issues, and thought that was what was going on, but after even more, I'm wondering about AS. I am having to do research on the law as well, since I requested (verbally) OT testing, but it was denied and "more intense executive function" testing was added to the list. The psych said to wait for the results and see "what they've got" but it seems to me from my research that executive function testing isn't going to reveal AS.

If you have read this far, you have my heart-felt thanks. I would appreciate any suggestions as to whether anyone recognizes this child's symptoms and what I should specifically ask for in the upcoming meeting on Jan. 11th and most importantly, how do I help him NOW. He is getting so frustrated and sad, it breaks my heart. And no one in his immediate circle, other than myself, validates his concerns. He knows he can't deal with a "normal" day in school, so why would he even try to finish school and get a job since he is so messed up? I am thinking to let him read here on this web-site and see if it strikes a chord with him.

If this is not enough (and I'll try to finish, I promise), but my youngest son, the one with severe hemophilia also has asthma, allergies, sleep apnea, and has been diagnosed with ADHD. He was granted a 504 plan, but refused special ed because no learning disability was found (they weren't looking for one at the time) and "lots of kids have chronic illnesses" and don't need special ed. This child is now on anxiety meds, besides everything else he has to take and still has trouble sleeping.

His issues are different from his brother's but they are even more pronounced in terms of sensitivity to lights, sounds, textures, tastes, routines, etc. He can look you dead in the face, and not accurately hear what you say, although his hearing has been tested and it is fine. His teachers say that he has a harder time than the average student to put thoughts on paper. I wonder if there is a sensory overload/integration/AS "thing" going on.

It has been hard to notice and put together the clues with everything that has been going on. He misses an average of 40 days of school a year. The insomnia is getting worse, and the ADHD med seems to be a double-edged sword. Plans are in the works for testing to be done up at Yale New-Haven Children's Hospital if the docs can find a way for my insurance to cover it. Getting the school district to even acknowledge it will be another chapter. But it doesn't make sense to not rule out sensory/auditory and/or AS issues. Don't public schools "have" to test kids that are struggling?

Last but not least, all of this struggle and research has led me to the almost certain conclusion that my husband has AS, and possibly my oldest son. Of course, they're "fine" too. I have no wish to label. I just want to understand and communicate. I do think though that if my husband were to read the research and at least acknowledge to his boys that he has struggles as well, that it would go a long way to supporting our boys and strengthening our family all the way around, which is the most important reason of all because we're all we've got. We have no family close by to help us concretely. And we are getting so very, very, very tired.

Thank you for letting me vent. If you have any feedback whatsoever, I would appreciate it very much.

Researchmom

To WrongPlanet!! !

Try the Parents' forum.

Thanks for the welcome and the tip, Richie.

It didn't register in my brain that this thread wasn't the place for a big story until after I posted such a book. Sorry.

Researchmom

Hello Researchmom, welcome,

I hope you will find information and support you need here on Wrong Planet!

Thank you, Scientist.

I see from your profile that you were recently diagnosed. Could you share a little about how that came about and what was beneficial or not about the experience? If you'd rather not, I understand.

I'm looking for info to help me help my family, but not necessarily go through an official process, unless the benefits are more likely to outweigh the disadvantages, if that makes any sense.

Researchmom

Welcome to WrongPlanet. I hope you find what it is your looking for.

Thanks for the welcome and wishes, weeksend.

I was up all night after a late night meltdown from my middle son, and I'm now having brain freeze without the cold ice cream.

Hopefully, I'll wake up with a clearer head, better able to communicate thoughtfully and concisely.

Good night everyone at Wrong Planet!

Researchmom

Welcome to WrongPlanet.

Researchmom,

It sounds like you're dealing with a lot of issues, and it's a bit hard to tease out what you're really looking for, in the way of advice. With that caveat, I'll give it a try!

It is very hard to get a school district to look at sensory integration issues in students, even young students. At the high school level, it's almost impossible, but you can try. The major issue, in having kids tested, is that the issues that a child is struggling with has to be affecting the child educationally. A school's view of what is affecting a kid educationally is likely to be quite different from a parent's view - school's tend to say, for instance, that if a child can walk up and down stairs holding his bookbag, he doesn't need PT; parents would argue that poor skipping, hopping, running skills will interfere with the child's ability to socialize properly on the playground, thus impeding the child's social interactions, which are a valid educational goal, and that those deficits would interfere with the child's ability to engage meaningful and/or successfully in PE classes (school district views win on this, almost always) - you need to be very clear about why the issue you are concerned about is, in fact, an educational issue if it isn't a specific curricular issue (reading, math, writing). If your sons' sensory issues are significantly interfering with their abilities to learn and participate in school, you need to be very specific about what sensory issues are causing what kind of interference. Sometimes, it is preferable to identify the specific concern (Johnny seems to have trouble focusing on x/sitting still when there are fluorescent lights on), rather than "diagnosing" the underlying problem (Johnny seems to have sensory integration disorder). If you tell them what the problem/concern is, they need to figure out what the reason is for it.

If your middle son's anxiety is at the levels you are describing, he could be eligible for an IEP on the basis of emotional needs, even if they don't think he needs it for learning disabilities. The category under which he receives an IEP is not as important as that he receive one - once he has one, he can get whatever accommodations, specialized instruction, etc he needs, for whatever reasons he needs it. But, you must put any requests for evaluations in writing. If it isn't in writing, it didn't happen. Once you have signed the Permission to Evaluate, there are strict timelines within which your school district must complete an evaluation. If you don't agree with their evaluation, you have a right to request an Independent Educational Evaluation (at school district's expense), and if they refuse, they have to initiate a due process hearing. You need to arm yourself with a thorough understanding of the law - your rights and your children's rights. Wrightslaw is a great place to get the information you need. They have tons of information and a free e-newsletter.

As far as your husband is concerned, if he can share his struggles, that may be helpful. As you will discover if you read a lot of posts here, many adults get diagnosed only after their children do, so it is possible that if your child(ren) get diagnosed, your husband may also. He may not be interested in exploring the possibility beforehand; there also may be valid insurance-related reasons why he would be hesitant to obtain a formal diagnosis (some people have been denied life insurance after being diagnosed!)

That is sensory integration disorder. And so glaringly obvious, at least to me, that I am really surprised no one has caught it by now! It's probably being complicated by the executive dysfunction he has from his ADHD, so that when the sensory overload frustrates him, he can't plan well enough to learn how to dissipate it. His stress level is probably ridiculously high; and inescapable stress causes depression... yeah, this is a familiar picture. I've been there, only with additional social alienation and obsessive-interest issues due to autism...

Have you asked for your doctor for a referral to an occupational therapist? Sensory integration therapy may be helpful; but he also needs to learn about how to regulate sensory input (you know, sunglasses, comfortable clothing, earplugs or headphones, that kind of thing), and the school needs to take the pressure off the kid before he explodes! If he isn't allowed to take a break, his grades will flip back to F's when his brain refuses to let him study any more... trust me, it's happened to me and it's the most frustrating feeling in the world, especially when everybody is calling you lazy for it. Managing stress levels is ultra-important. People with sensory issues and executive dysfunction simply cannot handle as much as the average kid can, and shouldn't be expected to.

Re: the possibility of autism: Maybe. I'd get tthe kids evaluated just in case. ADHD and sensory integration disorder are both very closely related to autism, and it wouldn't surprise me if you've got a couple of Aspies on your hands. If not, they might benefit from some of the same strategies that autistic people use, just as many autistic people benefit from some of the same stuff they teach people with ADHD and SID.

First, I want to tell you how much my heart goes out to you for all you have been through as a family. I am sure you are very, very tired; you have had SO much on your plate.

Second, there is good reason to suspect AS in the family, and since there is a genetic component it is quite possible that your husband and your sons all have it - or have parts of it, like I do (my son is diagnosed AS, and I probably wouldn't be, but since some 26 genes may be involved componitization happens).

Third, the schools have limited resources and, so, for them, "fine" is good enough. But it isn't. Society gains the most when all children reach their potential, and it sounds to me like your children have something holding them back from that. As parents, we have the job of seeing to it that our kids aren't just "fine," but are acheiving and succeeding in the way they were meant to. To get the school to help, you have to find the right box for them to check. No box, no help. That is actually how we got our son diagnosed: I knew there were problems, and I was being told they couldn't do anything. So, I asked, "when CAN you do something?" Based on that answer, we pushed for an IEP assessment, and in that process it actually was the school who identified the AS. Yes, it turns out we have an amazingly aware elementary school, and I am grateful for it.

Fourth, ADHD kids often are AS. Either misdiagnosed or having both. It is worth sifting sand to get it right, as the protocols are different.

Fifth, I worry about your teenage son being on anti-depressents. We've heard some horror stories here with teens and certain medications. It is much, much better to deal with the underlying stress factors than to medicate. But, since he's on, you can't just pull him off. Just, please, be very careful if you start seeing out of character behaviors, or things get worse. Don't get onto a cycle of replacing or adding on medications; clear him out of them first.

Finally, does your husband know where your research has led you? If he starts reading what you have, he may see AS in himself. This is one area where you cannot and should not force realization upon him. Some adults get very upset when confronted with the possibility; others find relief; but there is no way for any of us to know what that road would do for him.

You wrote so much and I had so many thoughts reading through it, I don't know if I've addressed them all. AS or not, the members here can help you sort through the process and find the best paths. You must be an amazing mom; you've already come a long, long way.

Antidepressants are horrible for some teens, useful for others. They're a tool like any other. But yeah, they won't work unless you are dealing with the underlying stress; and if they don't work, then dealing with underlying stress is the only way you can get any better anyway! Antidepressants aren't some kind of silver bullet; just kind of a leg up on the problem (if I may mix my metaphors a bit)...

Thanks, Cockney Rebel.

Hi Jat.

- It sounds like you're dealing with a lot of issues, and it's a bit hard to tease out what you're really looking for, in the way of advice. With that caveat, I'll give it a try!

Thank you.

- It is very hard to get a school district to look at sensory integration issues in students, even young students. At the high school level, it's almost impossible, but you can try. The major issue, in having kids tested, is that the issues that a child is struggling with has to be affecting the child educationally. A school's view of what is affecting a kid educationally is likely to be quite different from a parent's view -

That is a very good point. It's like I have to look through the the school's "eyes" and translate my concerns into what they see as an "issue".

- you need to be very clear about why the issue you are concerned about is, in fact, an educational issue if it isn't a specific curricular issue (reading, math, writing). If your sons' sensory issues are significantly interfering with their abilities to learn and participate in school, you need to be very specific about what sensory issues are causing what kind of interference. Sometimes, it is preferable to identify the specific concern (Johnny seems to have trouble focusing on x/sitting still when there are fluorescent lights on), rather than "diagnosing" the underlying problem (Johnny seems to have sensory integration disorder). If you tell them what the problem/concern is, they need to figure out what the reason is for it.

Another good point. That said, I'm thinking of identifying the specific concern and connecting that specific concern to his long history since this district has a way of dismissing outright or arguing a concern away by saying a problem is "just bad behaviour".

- If your middle son's anxiety is at the levels you are describing, he could be eligible for an IEP on the basis of emotional needs, even if they don't think he needs it for learning disabilities. The category under which he receives an IEP is not as important as that he receive one - once he has one, he can get whatever accommodations, specialized instruction, etc he needs, for whatever reasons he needs it. But, you must put any requests for evaluations in writing. If it isn't in writing, it didn't happen. Once you have signed the Permission to Evaluate, there are strict timelines within which your school district must complete an evaluation. If you don't agree with their evaluation, you have a right to request an Independent Educational Evaluation (at school district's expense), and if they refuse, they have to initiate a due process hearing. You need to arm yourself with a thorough understanding of the law - your rights and your children's rights. Wrightslaw is a great place to get the information you need. They have tons of information and a free e-newsletter.

I will see what the district comes up with. Thanks for the info on Wrightslaw. I've read some of their info, even bought one of their books, but the sheer amount of info is intimidating and extremely time-consuming. That's why I'm looking for advice, to help me focus and narrow my research.

- As far as your husband is concerned, if he can share his struggles, that may be helpful. As you will discover if you read a lot of posts here, many adults get diagnosed only after their children do, so it is possible that if your child(ren) get diagnosed, your husband may also. He may not be interested in exploring the possibility beforehand; there also may be valid insurance-related reasons why he would be hesitant to obtain a formal diagnosis (some people have been denied life insurance after being diagnosed!)

My husband would have little patience with that discussion right now since, his/our main goal is to try and get things better situated for our kids at school. I will say however, that he was the one that brought up AS in reference to our youngest. I didn't even know what he was talking about until I started to do some research, so he's most likely got more than a clue. But again, our focus is getting the kids stable so that we could actually talk about something other than a health or educational crisis almost every week.

Thank you for taking the time to read and respond. I appreciate it very much.

Try the book, Parenting Your Asperger Child by Alan Sohn (ISBN 978-0-399-53070-8.

This was a life saver to me. It was like it was written about my child. There were lots of things in there that were just like her, but that I'd never mentioned to the pyschologist as I never realised it was relevant. It helped me get the right diagnosis as it showing me what information was important.

Also there are really detailed self assessment sheets in it, which really helps focus you on precisely what your child has difficulty with and what they don't. It is really well written as it says what the trait is and then gives specific examples of what this means and looks like.

In fact, here is the checklist online:

http://books.google.co.uk/books?id=A4KC ... up&f=false

Hi Callista.

- That is sensory integration disorder. And so glaringly obvious, at least to me, that I am really surprised no one has caught it by now! It's probably being complicated by the executive dysfunction he has from his ADHD, so that when the sensory overload frustrates him, he can't plan well enough to learn how to dissipate it. His stress level is probably ridiculously high; and inescapable stress causes depression...

That's probably what upsets me the most, is the emotional pain that has led him to such feelings of helplessness/hopelessness....

- yeah, this is a familiar picture. I've been there, only with additional social alienation and obsessive-interest issues due to autism...

For what it's worth, I'm sorry. But I am grateful that you are sharing from your experience. I can understand people that don't go through much "not understanding" someone else's situation. What is hard for me to grasp is people that have gone through alot, but seem unable to understand another person's similar situation.

- Have you asked for your doctor for a referral to an occupational therapist?

I intend to at his annual physical next week.

- Sensory integration therapy may be helpful; but he also needs to learn about how to regulate sensory input (you know, sunglasses, comfortable clothing, earplugs or headphones, that kind of thing),

That is something that I never thought about. Not to sound stupid, (although its not the first hundred times), but where could I get more info on that?

- and the school needs to take the pressure off the kid before he explodes!

You take the words right out of my mouth, but as of the moment, the school has adamantly refused to take the pressure off because "he's fine!".

- If he isn't allowed to take a break, his grades will flip back to F's when his brain refuses to let him study any more...

That process has already started, all the while I'm told "he's fine". As of the most recent progress report, the kid is failing 3 out of 6 classes and one more he is barely passing. But that's because he "needs a better attitude".

- trust me, it's happened to me and it's the most frustrating feeling in the world, especially when everybody is calling you lazy for it.

My boys can relate.

- Managing stress levels is ultra-important. People with sensory issues and executive dysfunction simply cannot handle as much as the average kid can, and shouldn't be expected to.

It's beyond me why people with any brain activity whatever don't "get" what you just stated. If you boil it down to the fact that the human body, including it's supercomputer the brain, is a machine that has certain requirements to function properly. If the machine starts acting weird, you don't tell the thing "you need a better attitude" or hit it with something, you look at the problem and investigate "why" or "what" is causing the malfunction.

- Re: the possibility of autism: Maybe. I'd get tthe kids evaluated just in case.

Well, that's the other thing that I'm concerned about. I have no idea how to do that since, at the moment, I could not "prove" or point to anything crystal clear that I think would be compelling enough to make the school perform an evaluation.

Middle guy's psych ordered a "full" evaluation and even then, the school decided that wasn't necessary. At the time, I didn't know that they "had" to comply with a written request and so when they asked me to sign for the tests they decided to do, I just signed.

If it came down to my husband, and I was a betting person, according to my research, I'd bet my house that he has AS. It makes me sad, because all this time I just thought he was a lovable bull in a china shop. And for years, I thought he really didn't care, but what I think now is that he just gave up trying to understand "why" he was "different", which is why is so hard on his boys because he's that hard on himself, and in a way, wants to spare them the struggle, so it's just like "give up, kid". He is starting to understand that when we were kids, it was enough for school districts in our state to just push these inconveniences ahead to the next grade. Now, and especially in our district, there seems to be a "status" issue besides the legal stuff now, and if kids don't respond to all their "interventions", they pull out all the negative stops to supposedly motivate the kids to either step up or quit. My oldest son has personal experience with that one. But I'll spare you the details on that one.

- ADHD and sensory integration disorder are both very closely related to autism, and it wouldn't surprise me if you've got a couple of Aspies on your hands. If not, they might benefit from some of the same strategies that autistic people use, just as many autistic people benefit from some of the same stuff they teach people with ADHD and SID.

That's what it seemed to me from my research, but I still need to sort through all the information because each male in my family seems to be going through a little bit of a different situation.

Thank you so very much for reading all my "stuff" and responding.