At a loss... What to do next...ED kid

[Alicatty]

Hi guys...

I am the single mom of a 9 year old. I have been struggling with my son's school problems since Kindergarten. He has been evaluated by the school district and by Kaiser (Autism Spectrum Disorders (ASD), ADHD, developmental pediatrition, audiologist, Occupational Therapist (OT)) and he has not been diagnosed with anything.

School officially put him in Special Education last year... under ED and OHI.

His problems are mainly social and behavioral. This year there has been a LOT of task avoidance.

When he was in 1st/2nd grade, he would get into these huge tantrums and have the whole school in a tizzy. It got so bad for awhile that he had an aide.

That has gone away, but we still continue to have awful days. Shouting out, defying teacher, etc. etc.

He has a BSP that assigns stars for positive behavior in different areas... I give him rewards at home for the stars.

His IEP addresses some of the behavior and task avoidance. It also states that the RSP teacher is supposed to go over social stories with him, but he misses so much work in class that most of RSP is sent making up his work.

School did a mental health assessment of him in February, result was they were going to get him a counselor. There have been no visits with said counselor yet, and the school year is almost over.

I feel like I keep on going in circles. I get these notes about his behavior, but I do not know what to do next to help him. I feel physically sick, all of the time, just thinking about it.

Worst of all is my son. I dont know ow to help him. He has hated school since Kindergarten. Who ever heard of that? His self esteem suffers, he has no friends.

Please, someone tell me what to do next!?

 

[InsaneCdn]

I don't know how long ago the last evaluation was done, but if I read your post right... he's been evaluated for lots of things and NO dxes???
To me... he needs a (another) comprehensive evaluation. One that considers ALL the possibilities, including Autism Spectrum Disorders (ASD)/Aspie, and/or MI issues.

Having said that... there are other dxes that don't get picked up on comprehensive evaluations, including Auditory Processing Disorders (APD) - especially the "newer" ones like auditory figure ground and auditory discrimination. These make classrooms... beyond impossible for a kid with Auditory Processing Disorders (APD). That alone would be enough to account for a fair bit of the behaviour you describe.

Can you tell us more about what he was like as a baby and toddler? some family history (dxes often "run in families")

 

[Alicatty]

He was actually a really good baby/toddler! He would cry for really long periods of time when I would leave him at day care or with family. But otherwise, I did not have a hard time with him.

When he was about 3, he was in a big preschool... He was on a behavior plan because he would hit classmates and teachers... He would actually run after teachers who were trying to avoid his hitting. He was very hard to redirect. It was because of this that he went through his first Autism Spectrum Disorders (ASD) evaluation, but they did not diagnose him as being on the spectrum.

A few months after that, I moved him to a home-based preschool, where there were never more than 10 kids. The teacher worked with his behavior and he did great, up until he started Kindergarten in a classroom of 30 kids. (It was the district's first year of budget cuts and larger classrooms... Teacher was really frazzled, my son did not help the situation.) Even then, he got into trouble for shouting out, giving wrong answers "on purpose" (at least that is what the teacher said), etc.

His psychoeducational assessment came in 2nd grade, even though I had asked for it for two years. They did not find an Learning Disability (LD) or speech problem. His IQ was in normal range except for one area that involved pattern sequencing - in that he has high school ability.

Family history? Hmmmm. His aunt (my sister) is medically disabled due to bipolar. Cousin has ADHD, depression/substance abuse runs in my family. I am fairly "normal", but definitely have some Aspie traits.

I do not know much about his dad's side. His father had extreme anger/violent tendencies, which is why I left him when I was 6 months pregnant. Possibly a diagnosis there but he would never admit to it.

My son DOES have some sensory type stuff when it comes to hearing. He can't listen to loud things, complains that his class is too noisy, gets agitated in public places, and hears noises very clearly that to me are really low. When he was a baby, he would cry/startle easily at sounds like bells ringing and the vaccuum.

He can't sit still for long, gets bored very easily. Today at the bank he kept tipping his chair, making humming noises, bent a paper clip to scratch a desk... Even though I kept on reminding him to quit it. Talk about embarrassing!

He is really - REALLY - sensitive to people's emotions. Can pick up when they are agitated or scared of him or happy with him. Not that he knows the emotion, really... But it changes how he acts. He "knows" when someone is lying to him, just by reading their face.

He loves and is kind to animals, and younger children, and the disabled children he has met at school... So please don't think he is a bad kid.

Also, he does have facial tics to have been present for a few years.

Ugh. I just don't know what to do.

 

[Alicatty]

Soooooooo, Kaiser has diagnosed my child with ADHD and Pervasive Developmental Disorder (PDD)-not otherwise specified.

I guess I knew his was coming, and I am not sure it answers all of my questions, but at least it is something official, on paperwork, that I can hand to the school.

Any suggestions???

He struggles in the GE classroom, it is really hard to keep him on track.

Kaiser is suggesting medication. I am SO against it, and have been for years, but at this point wonder if it might help him.

 

[InsaneCdn]

He has hated school since Kindergarten. Who ever heard of that?

Yup. been there done that.
School almost killed my kid.
Until we figured out what was really going on.

Latest diagnosis is ADHD and Pervasive Developmental Disorder (PDD)-not otherwise specified?
Pervasive Developmental Disorder (PDD)-not otherwise specified is basically atypical Autism Spectrum Disorders (ASD). So, put yourself into Autism Spectrum Disorders (ASD) parent mode. Treat him as High-Functioning Autism (HFA) or Aspie. Read up on things that work for these kids. And push school to do the same.
This accounts for the social problems.

 

[soapbox]

Hmmm...
What did the audiologist test for? hearing? classical Auditory Processing Disorders (APD)? or the full spectrum of APDs?
One of the things that drove my difficult child completely around the bend was the "noise" at school.
And he started out with a couple of exceptional teachers with VERY well-managed classrooms.
The noise? Paper rustling, the heat register had a hum, pencils get dropped, the cough, the sound of someone getting a Kleenex... basically, "white noise".
The problem? He couldn't "hear" the teacher. In reality, the problem was that he heard everything... including fire engines 5 miles away (literally). He had major difficulty making out the teacher's voice. And having put so much effort into just "hearing", he had no brain power left for processing those instructions.
Plus he came home from school daily, totally exhausted.

If the audiology results don't specifically note test areas like "auditory figure ground" and "auditory discrimination", then you might want to look into testing for the full spectrum of APDs.

For the record... Auditory Processing Disorders (APD) are not uncommon in kids who are on the spectrum. But you don't have to be on the spectrum to have Auditory Processing Disorders (APD).

 

[Alicatty]

This description sounds a LOT like my son! What are the things that have helped yours?

I have Kaiser insurance, which does not test for Auditory Processing Disorders (APD). They said I would have to pay an outside specialist to screen for that. Instead they are saying he has hyperacusis???

 

[BusynMember]

With the ticks, I'd take him to a neurologist to rule out possible Tourettes or any sort of tic disorder. And I wouldn't rule out the spectrum. It takes time to get that diagnosed and he has many traits. Autism Spectrum Disorders (ASD) kids tend to have sensitive hearing. My son used to cover his ears all the time for things I thought were normal sounds. He also can hear people whispering, I swear, several rooms away!

He has improved a lot now and spent years getting good interventions. Good luck!

 

[soapbox]

Things that help with APDs...

You won't get technological interventions without a diagnosis - costs too much money for the school. We got NO interventions until we had the diagnosis, even though many of them cost almost nothing.

Keep your home environment as quiet as possible. Don't keep the TV/Radio/games/whatever else on continuously. Make space in your home for true quietness. No point adding to the overload.

He's 9, right? That's also a typical age for things to "magically" get worse... because that's when they switch from learning basic skills (reading, math, how to be a "student"), to using those skills to learn other things. If you haven't mastered the basics, things get worse really fast. Has school specifically tested him for reading, writing, math... the "basic" skills? Is he at grade level on all of them? If not... sometimes one-on-one instruction in a very quiet environment can produce fairly quick results.

If the school has a soundfield system, ask that they use it in every classroom he participates in. Soundfield is a mic system where the teacher uses the mic, and the "system" figures out how loud to make the teacher's voice... usually, about 20 db louder than the background noise. This makes it easier to "pick out" the teacher's voice. If it's already in the classroom, it costs nothing to use it (the teacher just has to be consistent in using it). The same effect can be had with a personal FM system, but those are one-per-student, and the student hands the teacher the mic to use, which transmits direct to the student's ear, using the same DB-difference logic. Either one can help... if the teacher and student are willing to use it and you can get it funded or it is available.

Other things that help:
A written outline at the start of the class of what the teacher will be covering, and then teaching to the outline. This helps the student to not get lost in the process.

A note-taker - either photo-copies of notes from an "exceptional" student (i.e. the one who takes really good notes), or notes taken by an in-class aide. This means the student doesn't have to focus on both listening and writing... they can just listen, then use the notes to fill in the "gaps".

When the whole class has been given "instructions", it helps if the teacher circles back with the Auditory Processing Disorders (APD) kid(s), and makes sure on an individual level that they "got" the instructions.

Have a student take notes on the board while the teacher is speaking. This is especially useful for "notices"... field trip tomorrow, guest speaker on Friday, remember that next Monday is the bake sale... the Auditory Processing Disorders (APD) kid can read the announcements instead of wasting brain-power trying to listen.

Have a student or an aide write the examples etc. that the teacher is using... rather than the teacher. The teacher needs to ALWAYS face the students... (yes ALWAYS) when speaking to them. This means... if you drop your pen, you stop talking until you pick it up... otherwise, the words you (teacher) speak to the floor, won't reach the ears and brains of the Auditory Processing Disorders (APD) kid(s). Some teachers switch to using the overhead projector and dry-erase pens instead of the white-board. This way, they can write on the "board" and it's projected behind them... so the teacher doesn't end up talking to the board.

All verbal instructions can be followed up with written copy - especially for projects and assignments.

All classroom "rules" need to be posted so the Auditory Processing Disorders (APD) kid doesn't have to "remember" the details.

If there is a noisier or quieter part of the room, use that to advantage. Away from the window might mean closer to the heat register... which is noisier? Front of the room usually provides less distraction, all other things being equal. Therefore, if the current "front" of the room is a noise-problem area... can the "front" of the room be moved?

Some students do well with white-noise headphones for "heads-down" work, to block out all the sounds that the rest of us naturally ignore.

There's probably more... those are the ones I know off the top of my head. One of the biggest helps was just getting the diagnosis. It gave difficult child the power to stand up to the teachers and say... "sorry, you were speaking to the board and I missed that... " or "can I get that in writing please"... Being able to advocate for himself and be heard and respected for it did a lot for his self-esteem. Just knowing that he wasn't "bad" but actually had a disability was also a big psychological boost. The other kids DID hear the teacher... and he DID NOT. Not because of "not paying attention"... but because of running out of brain-power trying.

 

[TiredSoul]

Yes my difficult child has also hated school since Kindergarten and was also getting in trouble in preschool for his behavior. He has a diagnosis of ADHD and ODD. I think there may be some Autism Spectrum Disorders (ASD) in there too.

Soapbox - which Auditory Processing Disorders (APD) does your difficult child have that you described up thread? I can't see signatures from my phone.

 

[TiredSoul]

Had to look up Hyperacusis as I hadn't heard of that before. Interesting to note

"Anxiety, stress, and/or phonophobia may be present in both types of hyperacusis. Someone with either form of hyperacusis may develop avoidant behavior in order to try to avoid a stressful sound situation or to avoid embarrassing themselves in a social situation that might involve noise.

A person suffering from hyperacusis might be startled by very low sound levels. Everyday sounds like shutting doors, ringing phones, television, running water, ticking clocks, chewing gum, cooking, normal conversation, eating, dishes, and other sounds will hurt his/her ears. In extreme situations even the use of earplugs fails to bring relief and the patient may spend their life trying to avoid all sounds and just stay at home."

 

[soapbox]

We've been dealing with severe challenges with auditory figure ground - difficult child can hear "perfectly well", as in almost too well (i.e. he's "asleep" clear across the house, and can still hear us whispering). But he can't hear any one type of sound above another if there are too many kinds of sounds. Background noise is a killer... and school is FULL of background noise.

We discovered that auditory figure ground often isn't screened for. Even professionals aren't necessarily aware of it. The PhD-level audiologist who did the final testing for APDs told us that she gets far fewer referrals for testing than statistics tell her to expect.

One of the tell-tale signs of problems with auditory figure ground is when they function perfectly fine one-on-one in a non-distracting (i.e. quiet) environment. This typically gets chalked up to either ADD/ADHD (not managing distraction well), or to wanting individual attention. In fact, the child CANNOT hear the teacher, and needs interventions, accommodations, and sometimes technological assistance.

 

[Alicatty]

Ok guys now i really need the advice. IEP meeting yesterday brought what I expected. The district wants to move him into their ED classroom.

I am not really sure what to do. I have not told my son but he has made many offhanded comments recently about wanting to move to a new school where there are less kids, teachers that would see that he is not always the one getting in trouble, etc.

IEP team told me that work is going to get harder next year (4th grade). He is barely at grade level now, even though he is very bright and academically tests average-superior in all areas.

I am just not sure what to do. my son is the one losing out here. I have exhaused most areas of the school, and they continue to suspend him for things he swears he did not do.

I am not sure if I should fight for more accomodations at his current school, or give the ED classroom a try.

Is the ED classroom even appropriate for a child with ADHD and Pervasive Developmental Disorder (PDD)-not otherwise specified? Do they teach social skills and the things my son really needs?

 

[InsaneCdn]

Is the ED classroom even appropriate for a child with ADHD and Pervasive Developmental Disorder (PDD)-not otherwise specified? Do they teach social skills and the things my son really needs?

Usually, NO.
As in... the Pervasive Developmental Disorder (PDD)-not otherwise specified/Autism Spectrum Disorders (ASD)/Aspie kid will pick up all sorts of bad behaviors, and the methods usually used to manage an ED classroom are totally NOT suitable for "our" kids.

Your difficult child is not a "brat", nor is he "emotionally disturbed".
He's wired differently.

Get an advocate - fast.

 

[BusynMember]

Ok guys now i really need the advice. IEP meeting yesterday brought what I expected. The district wants to move him into their ED classroom.

I am not really sure what to do. I have not told my son but he has made many offhanded comments recently about wanting to move to a new school where there are less kids, teachers that would see that he is not always the one getting in trouble, etc.

IEP team told me that work is going to get harder next year (4th grade). He is barely at grade level now, even though he is very bright and academically tests average-superior in all areas.

I am just not sure what to do. my son is the one losing out here. I have exhaused most areas of the school, and they continue to suspend him for things he swears he did not do.

I am not sure if I should fight for more accomodations at his current school, or give the ED classroom a try.

Is the ED classroom even appropriate for a child with ADHD and Pervasive Developmental Disorder (PDD)-not otherwise specified? Do they teach social skills and the things my son really needs?

Absolutely not. Are they giving him interventions for his Autism Spectrum Disorders (ASD)? He needs interventions not being put into a class of children who are mostly undiagnosed and have sometimes dangerous behaviors (my friend has worked in an ED classroom for over ten years). I actually would never allow my child in that sort of classroom. An Learning Disability (LD) class or Special Education class would probably work. They are much smaller and the kids get more attention, regardless of their diagnosis. They dump all the behavior problems (in their minds what a behavior problem is) into ED. If my son who was also diagnosed Pervasive Developmental Disorder (PDD)-not otherwise specified would have been in an ED classroom the kids would have bullied him until they broke him. He was in a Special Education class half the day and half the day he went to regular classes with an aid and it worked really well for him. All kids are different, but I wouldn't allow the ED.