The honeymoon is over between DS and 1st grade...

[debbi801]

I'm not sure what to do. DS is 6, has Asperger's Syndrome, and is in an NT 1st grade class full time. The first 3 weeks, he did great. Since then, it's been pretty rough. While I don't think he has a co-morbid dx of ADHD, he demonstrates a huge amount of ADHD behavior, especially when overwhelmed.

Last year (kindy), we tried the meds route. Our pediatrician referred us to a psychiatrist. Started with Focalin XR 5mg. He lasted 10 days before we pulled him off of it, the side effects were aweful. Then we switched to Adderall XR 5 mg. He was on that for about 6 weeks. For the most part it worked, but the crash at the end of the day was terrible. Then we tried 10 mg of the Adderall XR. That didn't change anything. Finally, around Thanksgiving, we started Vyvanse (30mg). That worked the best and he was on it almost until the end of the school year. The problem is that the p-doc neglected to mention that the ADHD meds amplify every aspie behavior. The tics, the hyperfocus, the OCD, the antisocial behavior, the anxiety, etc. etc. By the end of May, we had pulled him off. He's been med free ever since.

Over the summer, he went to a great day camp that offered an integration program. DS was in a bunk of 12 kids--10 were NT, he and one other were on the spectrum. Both DS and the other boy had one-on-one aides. The bunk also had 2 counselors. He also went from having OT every other week to having OT every week. He had an awesome time and didn't have any difficulties there.

For this school year, he has the following services through the school: OT 15 minutes a week (pretty much a waste), pragmatic speech 30 minutes a week, social skills 30 minutes a week. He also has a one-on-one. But, the bd. of educ. has only approved the aide for the first half of the school year. He is also continuing with the weekly OT outside of school and bi-weekly social skills class outside of school. When we created the IEP for this school year and set his goals, the school was very insistant on mainstreaming hm, because according to their testing, he was in the superior/genius IQ range and they thought he would be bored in the special ed. class.

So, the 1st 3 weeks of school were amazing. It was also basically time spent reviewing the rules, reviewing kindy stuff, etc. Then, real school work started. And the behavior issues started. ADHD-like behavior. But also stuff that makes me think he is totally overwhelmed and over his head--he is hiding under his desk, running away from class, going to the bathroom and refusing to come out, crying, complaining he is too tired, too itchy, too hungry, too (you pick it). He is coming home with full days of class work that he outright refused to do at school, which makes our evenings quite fun.

We called his pediatric neuro-psychologist and got the name of the pediatric psychiatrist that specializes in aspie kids. We put a call in to him late today, but had to leave a message. I'm torn between trying meds again, but staying away from the ADHD meds. Or, requesting an emergency IEP meeting and requesting he get moved to the special ed. class room. Or, a combination of the 2. I have no idea what kind of education he would get in the special ed. class room. I don't want him to get lost in the shuffle while that teacher is dealing with some of the severe behavior issues from other kids (I've seen some of this first hand). But at the same time, it isn't fair that his current teacher is having to spend so much time dealing with his behavior issues. In a small setting, he does great. 22 kids overwhelms him.

Any BTDT suggestions? Sorry this got so long.

 

[bookwormde]

If ADHD behavior is primarily exhibited when overwhelmed (high levels of anxiety) he is probably not ADHD but instead is exhibiting a typical reaction to stress. Most meds are contraindicated for AS children because of the side effects you indicate, because they often heighten anxiety levels. EF issues and other characteristics of Aspergers are often mistaken for ADHD by inadequately trained and experience clinicians, the real key to knowing is if he can concentrate on areas of his interests for extended periods of time then his is not ADHD and the “hyperactivity” is a natural result of heightened levels of anxiety and the lack of innate social “throttles”.

His IEP definitely needs adjusted. At this age a well trained 1 on 1 paraprofessional is typically the most effective support along with a other accommodations which are standard for Aspergers children. For my son his anxiety level dropped about 80% once he had a reasonable well-developed IEP, most of his teachers had their “I get it moment” and the paraprofessional was in place to provide help and reassurance and effective implementation of the IEP. Additionally all manifestations almost disappeared.

From an LRE perspective a general ed setting with a para is the first thong the team is supposed to try if there is a reasonable chance of success.

It is good that you have found a Apsergers specialist, although he would be one of the first psychiatrists that I have heard of who really “got it” if he turns out to be competent, current in this education and effective in his recommendations, most still think of Aspergers as a “disease” not a neurovariation.

bookwormde

 

[BeckyScott]

I would request an IEP meeting, if you request it they have to do it. And ask that his teacher attend.

From the teacher's perspective, if she is dealing with several behavior kids, she probably is overwhelmed. And it's fairly likely that the Powers That Be don't recognize she is or don't care, and it would be doing her a favor to have someone bring it to their attention.

At any rate, it isn't working for your son, and so it should be changed. To what, I'm not exactly sure. In theory, he should be able to access the general curriculum in a SpEd classroom. Maybe pulling him out for some classes and sending him with the other classroom for others? And schedule a follow-up meeting on it in a month?

Something also should be done about his homework. (this is something we struggle with here, too) The amount of homework is not acceptable for his grade level-- if he's got that much now, imagine 4th or 5th grade-- and they will say well if he'd do it in class, he wouldn't have any-- there is an accommodation for reduced homework or something about emphasizing mastery of a skill rather than repetition. I'd push for that. Or maybe requesting pull-out during the day for the specific purpose of helping him with the daily work he isn't getting done.

There also seems to be a problem with the school not letting you be part of the "team". And that happens so much, the whole "us against them" thing that happens at IEP meetings. I think this is usually when many of us turn into Pain-In-The-Butt Parents. Request a meeting, prepare yourself, and then the bottom line is- okay this is what you all insisted on, and it's obviously not working. So now here's my idea, and we need to try it. And if your son needs a para for the entire year, that's not the Board of Ed's decision to make, unless they have personally observed him and are part of the IEP team.

Can he tell you what bothers him about the regular classroom? Sometimes we overlook the obvious that way. It's worth asking.

 

[1stluvispooh]

I agree you should get him a para. But also while you are adjusting his IEP you might want to consider building in sensory breaks. My DD in 2nd grade and HF ASD has them built into her day. (in fact I had a meeting yesterday with her teacher and special ed teacher and we are add 1 right after lunch because she is overwhelmed and melting down at that time of the day) You might also want to figure out how to hand his stress behaviors. I know my DD calms down with some oral input. Gum works the best but school being school they refuse to give her gum so yesterday I dropped off a big bag, more than enough for the whole class, of gummy bears, suckers etc so she could have them during the day.

As for the meds question. Well I've done the meds route in the being and it didn't work very well for us at all. You might want to consider some bio-medical interventions instead. Just adding some Omega 3 fish oils might help. I even know where you can find some that are chew able and taste like orange starburst. pm me if you want more info.

Good luck!

 

[Earstou]

22 kids in a first grade classroom!!! Wow.
In our school, they limit the lower grades to 16. Sometimes they get a little higher due to kids moving into the district, but they never start higher than that.
After doing a little research the National Education Association suggests a cap of 15:http://www.nea.org/classsize/index.html
So, you can use this as additional reason for an aide or para for your ds, as it appears his teacher could easily be overwhelmed.

 

[debbi801]

I would request an IEP meeting, if you request it they have to do it. And ask that his teacher attend.

From the teacher's perspective, if she is dealing with several behavior kids, she probably is overwhelmed. And it's fairly likely that the Powers That Be don't recognize she is or don't care, and it would be doing her a favor to have someone bring it to their attention.

At any rate, it isn't working for your son, and so it should be changed. To what, I'm not exactly sure. In theory, he should be able to access the general curriculum in a SpEd classroom. Maybe pulling him out for some classes and sending him with the other classroom for others? And schedule a follow-up meeting on it in a month?

Something also should be done about his homework. (this is something we struggle with here, too) The amount of homework is not acceptable for his grade level-- if he's got that much now, imagine 4th or 5th grade-- and they will say well if he'd do it in class, he wouldn't have any-- there is an accommodation for reduced homework or something about emphasizing mastery of a skill rather than repetition. I'd push for that. Or maybe requesting pull-out during the day for the specific purpose of helping him with the daily work he isn't getting done.

There also seems to be a problem with the school not letting you be part of the "team". And that happens so much, the whole "us against them" thing that happens at IEP meetings. I think this is usually when many of us turn into Pain-In-The-Butt Parents. Request a meeting, prepare yourself, and then the bottom line is- okay this is what you all insisted on, and it's obviously not working. So now here's my idea, and we need to try it. And if your son needs a para for the entire year, that's not the Board of Ed's decision to make, unless they have personally observed him and are part of the IEP team.

Can he tell you what bothers him about the regular classroom? Sometimes we overlook the obvious that way. It's worth asking.

His teacher has been at the one IEP meeting we've had so far (after 2 weeks of school). She's very sweet and very experienced. She has the patience of a saint. DS is the only kid with behavior issues in her class, but even so it is too much for her to handle. She open to trying what ever works, but he's been so overwhelmed that it has been difficult to find something that works.

We've asked him about what bothers him in class and what is he doing when he feels overwhelmed but all we get is an "I don't know."

I agree you should get him a para. But also while you are adjusting his IEP you might want to consider building in sensory breaks. My DD in 2nd grade and HF ASD has them built into her day. (in fact I had a meeting yesterday with her teacher and special ed teacher and we are add 1 right after lunch because she is overwhelmed and melting down at that time of the day) You might also want to figure out how to hand his stress behaviors. I know my DD calms down with some oral input. Gum works the best but school being school they refuse to give her gum so yesterday I dropped off a big bag, more than enough for the whole class, of gummy bears, suckers etc so she could have them during the day.

As for the meds question. Well I've done the meds route in the being and it didn't work very well for us at all. You might want to consider some bio-medical interventions instead. Just adding some Omega 3 fish oils might help. I even know where you can find some that are chew able and taste like orange starburst. pm me if you want more info.

Good luck!

He already has a para-pro. The problem is that the board of education had to be brought in to get approval for it (the budget here is very tight) and they only approved it for 1 semester of the school year.

DS would not do well with oral input, that is actually one of the areas that his OT is working on with him. He has huge oral sensory issues, which also makes supplements difficult (unless we can hide them in one of the 5-6 things he will eat).

22 kids in a first grade classroom!!! Wow.
In our school, they limit the lower grades to 16. Sometimes they get a little higher due to kids moving into the district, but they never start higher than that.
After doing a little research the National Education Association suggests a cap of 15:http://www.nea.org/classsize/index.html
So, you can use this as additional reason for an aide or para for your ds, as it appears his teacher could easily be overwhelmed.

Sadly, the schools here are terriblely over crowded. He had 23 in his kindergarten class last year. Our home school is close to 20% over capacity right now. he already has the para-pro, we're just not sure how long for.

bookwormde, you nailed it right on the head as far as the ADHD goes. That's why we don't think there is the co-morbidity. We just think this is his way of dealing with sensory overload. We've been very lucky with his neuro-psychologist. She's very well educated on AS and goes to several different conferences about it each year. She spends more time counseling DH and I about how to better understand and accept DS's quirks than any time she spends with DS.

I think we need to look at moving him at least part time to a smaller/more quiet area for work. Hopefully, the school won't then decide to pull his para-pro, claiming he doesn't need her any longer.

Thanks for all your thoughts.

 

[bookwormde]

A couple of things, if you have not yet read Tony Attwood A Complete Guide to Aspergers (C2007) it is a must, it is available on Amazon for about $25.

Second if your child has a paraprofessional as an accommodation make sure it is documented as an accommodation in the IEP (along with all the other IEP areas where she is facilitating services). This makes it a violation of IDEA if the district fails to provide one in the future.

My son was doing pull out for English curriculum until this year (I actually an just back from and IEP meeting formalizing the change to inclusion services for English). With the EF processing and memory differentials and associated auditory processing challenges this was a much better environment for this area until he had made progress and anxiety was very low (he is in 4th grade this year). He still receives his core instruction in Social Skills/TOM/EF during speech pull out.

bookwormde

 

[SSRJen]

His teacher has been at the one IEP meeting we've had so far (after 2 weeks of school). She's very sweet and very experienced. She has the patience of a saint. DS is the only kid with behavior issues in her class, but even so it is too much for her to handle. She open to trying what ever works, but he's been so overwhelmed that it has been difficult to find something that works.

We've asked him about what bothers him in class and what is he doing when he feels overwhelmed but all we get is an "I don't know."



He already has a para-pro. The problem is that the board of education had to be brought in to get approval for it (the budget here is very tight) and they only approved it for 1 semester of the school year.

DS would not do well with oral input, that is actually one of the areas that his OT is working on with him. He has huge oral sensory issues, which also makes supplements difficult (unless we can hide them in one of the 5-6 things he will eat).



Sadly, the schools here are terriblely over crowded. He had 23 in his kindergarten class last year. Our home school is close to 20% over capacity right now. he already has the para-pro, we're just not sure how long for.

bookwormde, you nailed it right on the head as far as the ADHD goes. That's why we don't think there is the co-morbidity. We just think this is his way of dealing with sensory overload. We've been very lucky with his neuro-psychologist. She's very well educated on AS and goes to several different conferences about it each year. She spends more time counseling DH and I about how to better understand and accept DS's quirks than any time she spends with DS.

I think we need to look at moving him at least part time to a smaller/more quiet area for work. Hopefully, the school won't then decide to pull his para-pro, claiming he doesn't need her any longer.

Thanks for all your thoughts.

Has there been a sensory profile by the OT or other trained staff been done on your son? This is a type of assessment that should pinpoint the types of sensory he is seeking/needing. The para-pro could be trained by the OT to provide these several times per day. Brain Gym has some great exercises as well...which may help.

 

[JESW]

Sorry for all that you are going through... my ds13 is an apsie and we have gone through a lot with him over the years. He is now in 8th grade and doing rather well. We had him transfered out of district (through the school) the middle of 6th grade and that was the BEST thing for him and all of us. Public school was way too much for him. And the meds that work for him is abilify - like day and night when he is on it. He also takes seroquel for mood disorder. Now we are also going through puberty so hard to tell where aspergers ends and teenager begins.

Good luck to you!!

Jill

 

[SmallWorld71]

Hi,
Your son sound a lot like my nephew. In kindergarten he spent a lot of time in the principal's office to finish work because he couldn't seem to get it done in the classroom. I went with my brother and sister in law as their advocate to the IEP meeting where they basically told us that he should just be medicated for ADHD. Well, like your son that is not the issue, it just manifests itself that way. They also said that cognitively he was one of the brightest in his class and didn't need any help. Ummm, then why is he the only one who can't get his work done?
Anyway, we refused to sign and kept fighting and finally got him into a program where he was in the regular classroom for part of the day (with a SPED teacher or para at all times) and in a small SpEd classroom for part of the day to work on social skills etc... He has been part of this program for several years and now that he is in 4th grade, he is able to spend almost the whole day in the regular classroom with no problems. For him, being able to leave the classroom and get breaks from it allowed him to do much better when he was in the classroom.
Good luck.

 

[KirstenB]

I like SSR Jen's ideas on sensory issues, and developing a profile. Does he use anything to relieve overload, like a weighted vest/jacket or chewing on something etc? I'm just starting down this path with our 3 yr old who was dx'd with ASD last summer. At that point, she had huge sensory issues, both over- and under-responsive to stimuli. She literally couldn't attend to anything other than basic needs like eating. Through a lot of trial (and even more error!) we seem to have stumbled on some things that help her regulate her sensory input.

I'm also noticing that the sensory issues shift over time. What used to be soothing is now too much stimulus, and vice versa. Also, how is his sleep? Again, that was another huge issue for us.