Just finding out, new on Wrong Planet

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I am new to Wrong Planet. My son has so far been diagnosed with everything except Asperger's. Hopefully we are on our way to correct diagnosis. I have always struggled to find out why my son does the things he does, and is there name for it. Until a few months ago it was ADHD, Obsessive Compulsive, Bipolar. Oppositonal Defiant Disorder. When one day someone said Asperger's, I now FINALLY feel like I know my son. My son is currently receiving Special Education Services with no luck with adequate modifications/services. Especially since he is classified as Emotionally Disturbed. What do you do while waiting on the official diagnosis?

Welcome - I'm pretty new too. It sounds like the same story for us, my son is in a ED special ed classroom. While it has reduced the stress from mainstream school, it has not actually helped educate him. We have received a bunch of official diagnosis and they really don't "do" anything. (unfortunately) We have 2 dx of AS from MDs, but the Neuropsych said not AS but BP, now through the school's testing, they say he qualifies under the "Autism Like" category. They no longer differentiate based on DX, rather based on need and even if DS isn't official, it is clear that by thier testing his needs for intervention are similar to those with Autism.

One MD, who we went to confused about the multiple dx (BP & AS), told us that until we understand what he needs for the AS he wouldn't get better. He told me that no medicine in the world would fix his outbursts until we figured out what was causing them (from an AS perspective). He is on some meds but we have reduced them substantially after beginning work on the AS issues and have found improvement.

Until then, I was looking at the meltdowns / outbursts from an NT perspective and they didn't make sense. But then I started making notes of anything pertinant that occurred when he melted and found a common denominator; he doesent really know what he is feeling or how to express it.

So for instance, we are at a noisy water park, he gets hungry, and is tired. A kid pushes him in line and he runs back to me and has a violent meltdown. Now, for most of the folks here, they're like - duh, anyone would melt down. Well, not in the NT world. Maybe an NT kid would come back and cry or complain, but not meltdown. Mine completely flips. Never says he's hungry, never acts bugged about the noise, the issue with being pushed is obvious to anyone, but there were the other factors. Until I got it that DS really can't tell me about the things that distress him, things were getting worse and worse.

Now, I am starting to get that DS really doesn't even know whats bothering him, it just builds and builds until he has an outburst. I am finding that true meltdown's are fairly rare, but he has tantrum like outbursts when he's stuck and uncomfortable and doesn't know why and wants me to make him feel better.

So at this point I am getting.... DS has sensory issues and becomes anxious really easily, specifically around social interactions and things that confuse him due to his executive function deficiets, When he has multiple stressors going on he will start to tantrum until I take some of the stressors away. He has no idea what is bothering him, but is starting to learn what makes him feel better. We are making progress. The ED classroom is fine for hime while we figure out what he needs (mainstream would be a nightmare), but I don't think that ED will be OK for long. He needs to be out of there by next year. I am hoping for a private placement at a school for kids with AS.

BTW - DS is super smart and verbal. He can talk about any of his special interests with adults for hours. He makes good eye contact and hugs people he loves. No one gueses AS. No one would guess that he can't tell you what he's feeling. He talks so much (with back and forth) that it really distracts you from evevn looking at communication issues. That said, if you try to talk back and forth about something he has no interest in, it will end after one exchange.

I can tell you that knowing and understanding is coming in phases. I knew so little about AS and what I thought I knew was what the media represented. The more I know, the more I "get it", the better things are getting... for all of us.

How old is your son, and what other educational challanges does he have? That information might help responses.

Stick around Sterrio. You'll likely find a lot of good insights and advice when you look through old threads (and new ones too ) around here. And by all means if you have a situation or a particular concern, post it! Lots of us here want the best for our "younger teammates" and will do what we can to help. And a lot of parents here have probably seen or dealt with most of the problems you willl encounter and can advise or at least sympathize.

I think advice from the community (a wide range of applicable perspectives and experience) is probably your best resource - just as you are the best resource your kid has at the moment. You've got to learn his world (Imagine it like learning sign language if your kid was deaf) and his language, until he's old enough and practiced enough to see how your's works... (Imagine lip reading - that's about as good as most of us get, if you're following the 'deaf' example)...

Anyways. I shut up now...

Welcome.

Sounds like our situation a bit - A year of seeing a psychologist came up with: Mood Disorder-NOS, suspected Bipolar, suspected OCD, and suspected Temper Dysregulation Disorder (or something like that). Never considered an Autism Spectrum Disorder. Luckily we got to the right docs before he was officially misdiagnosed, ended up with PDD-NOS and Mood Disorder-NOS. Found Wrongplanet. Yes, I am at the right spot...I can finally relate to other parents. The Bipolar forums just didn't feel right to me. Things started to make sense the more I learned. While waiting for the ASD diagnosis, read, post, and research as much as possible.

My son struggles with repetive behaviors in his writing. He writes, eraces, writes again, traces. Writing is torture for him. In a recent IEP meeting, I requested for him to call answers out (spelling) because when studying at home he had all correct. When taking the test at school (in writing) he would get atleast six wrong. I was told this modification was for someone who couldn't write at all. It seemed like I was shot down anytime I asked something that wasn't to do with him being Emotionally Disturbed.

He also has alot of outbursts in class. When I got one of the reports from the teacher. It says, he had an outburst when a student touched his chair. When he came home I asked what happened. He said that he asked the little girl twice to stop touching his chair, and she didn't stop. This is the second time he has had an outburst because a student is in HIS space. Why doesn't the teacher move him?

He also gets homework detention everyday that he does not complete assignments! We stay up until 8:30-9:00 trying to complete it in hopes we will get it all done. This is with a time modification suppose to be implemented. What teacher does this?? We asked if we could complete some homework assignments on the weekend so it wouldn't be so hard on him during the week. I was told no, because this was when she does lesson plans.

It seems that they would be more willing to help if he had another diagnosis. Shouldn't they have to provide modifications based on individual needs and not a "Diagnosis"!

I do think you'll have a better chance for the accommodations you need with and AS diagnosis, but remember that a school resistant to change and leeway will probably always be a school resistant to change and leeway. They should be adapting to the individual student, but too many teachers and schools do not feel they have to. Sometimes there is only one really answer to that problem: leave the school. There are schools out there that WILL adapt to the individual student, and in which AS children will thrive. If, even after you have the AS diagnosis, you are finding that is not your school, I would seriously look at other options.

My son has a co-morbid in his hands, and has had many writing accommodations. We have, in fact, not accepted all the ones that have been offered, in the interest of encouraging our son to acquire as many "normal" skills as possible, to allow him the most life-long independence possible (he agrees with us on that, overall). The goal is to keep him from getting overly frustrated, and having too much of his grade tied to his one obvious weakness, when he intellectually clearly absorbs all the material. I haven't gotten my way on every argument (I do not understand why middle school must grade on note taking, for example, when taking notes is clearly difficult for my son, and not in the least bit essential to his learning the material), but I've gotten what we need when it matters most.

The territorial thing sounds fairly AS, btw. Things like that are really hard for our kids, and they don't understand everything involved in the situation.

I'm just wondering...

Since his verbal answers are correct / his written answers need improvement...
This establishes a writing issue. Do we know yet exactly what the issue is?
It could be physical. There is a condition that causes arm pain when writing text.
It could be visual. There is a condition that causes letters to move or partially disappear when viewed, especially in certian lighting or on certain colors of paper...
It's more likely to be something I'm not thinking of, but the habit your son has of erasing what he wrote may be the key...

Have you ever asked him what the specific reason is behind this activity? You may not get an answer from such a broad question, but if you ask about the applicable senses directly.. "Does is hurt to write / Do the words look funny after you wrote them / Do the letters or words move / etc"

How is his reading? How are his fine motor skills? Is he a visual thinker (pictures as thoughts) or a text thinker (words in his head)? The answers to these questions may influence what you wish to ask him, or how you phrase questions (the right phrasing can be MONUMENTAL in identifying ASD issues).

As for HIS space outbursts, I can't do anything but agree with your son. Personal space is the only thing we have in a busy setting like a classroom and it should be respected. This issue should ease with time, but until then, yes, the teachers should allow him to choose his own best seat (probably near a wall).

As for detention, it's ridiculous. Next time you guys do homework, split it in half. Choose the most important parts (according to you) and get your son to do those and only those. Attach a personal note to the teacher (an original every day) documenting the time spent on homework, the complications you and your son encountered, and demand that he be excused from the remainder and excused from detention due to the overwhelming nature of the assignment. Add a PS to each note, detailing that YOU chose what you suspected was most relevant and that if the teacher doesn't agree with the relevance of your choices, you would welcome her daily input in the form of her highlighting the most important (as per her) questions when assigning the work to your son.

Thank you for the advise. His writing is a repetitive thing. It doesn't hurt. He has always done this. When he first started writing, I thought maybe he's just trying to make it perfect. He does it over and over again. I have studied it. He reads fine. I recently found out that he can't find a moral of ANY story! We read a short story and began answering the questions. We zoomed thru it until it asked for the moral of the story and how could it pertain to his life. He has a clothing irritation as well. He doesn't refuse to wear certain clothes, but he adjusts and pulls on them so much, I am surprised he still has some on at the end of the day.

So finally last Thursday I started writing letters. School, School Board, State. I think I finally got some help. I appealed all disciplinary action until adequate modifications were give to my son. His IEP stated that he is suppose to receive Social Work Services (never received), I was told that once he starts receiving services it is only 1 time per 9 week grading period. When I wrote the state, she confirmed that was not accurate. She wroted to the Director of Special Education and requested and investigation. She also asked for compensatory services for my son. I was very surprised.I also started limited the amount of time spent on home work. 45-60 minutes. I also asked to reconvene the IEP meeting and asked for an IEP Fascilitator. I am bring the psycologist with me to this meeting.

Excellent!
I'm glad to hear you've got progress!

Hi. I did alot of note taking. I was a very young father to have a kid but I kept notebooks of stuff Ryan did while I waited for a diagnosis. we taped him too.