HELP!!!

iVillage Member
Registered: 03-26-2003
HELP!!!
12
Thu, 02-16-2006 - 9:55am

Does any take their children for addtional therapy (outside of what is offered at school)? I feel I really need to be doing more for our son.....his anxiety is at an all time high (for example - he is suspended from school for today for biting his favorite teacher). His meltdowns are becoming more volatile.....hitting his head against things, kicking chairs, throwing chairs and now biting.

I am discussing medication with his doctors (ped, therapist, and neurologist) but I would like to try some other things as well. I really feel drugs should be a last resort - not first - but I am willing to try if it will help him. I'll do anything at this point.

Has anyone tried music therapy? interactive metronome (brain-training)? OT specializing in anxiety or AS or sensory issues?

Help!
Christie

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iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Thu, 02-16-2006 - 10:43am

Hey there!

We do and have done a number of things. Right now Mike goes to a therapist who works on social and play skills as well as how to manage his behavior. It is a slow process but this has been the best therapy for both the kids so far to learn and change behavior. Cait was going for a while too but is ready to move on to a social skills group and other things. This is my same therapist. She is the families therapist (all but DH) and specializes in autism so she really gets these kids and the whole family dynamic. She has loads of great ideas and has helped tons with both kids and keeping my sanity.

We have done music therapy and I liked it, however, the music therapists moved thier office to a place that was too far away after we had only gone for about a month so I can't say if it would really have helped in the long run. It was more geared for lower functioning kids though and though the guy had some great ideas with Mike it took a while to get things started then they quit.

We have done SI clinic therapy when the district paid for it. That did help with alot of his sensory issues but he still has behavior challenges. They got better but I am not sure it was SI therapy specific. I think it was more taking away alot of his anxieties and stressors and implementing behavior techniques more. However, SI therapy did help alot of Mike's issues and I sure wish I could afford to pay for sensory clinic myself. I would. I currently work for the OT that runs that sensory clinic. We are putting on summer camps with a sensory base and lots of therapy. If they give me a good enough discount I will likely send the kids to it.

We have had a behavior therapist come to our home. Didn't help much except give me someone to bounce ideas off of and get me motivated again. I already knew the stuff but I was a behavior therapist. It may help you. Ours was funded through Regional Center.

One of the best therapies for Cait has been theraputic horsebackriding. She has been doing that for 5-6 years. That isn't specifically for behavior but it helps her sensory system, motor skills as well as gives her something to feel good about. Animals are her obsession and this is really great for her for a number of reasons but not behavior specific. Motor skills like I have said, they have her in a group of similarly able girls and they work on social skills too and soon Cait will volunteer there and learn some job type skills.

Where I work they have Interactive Metronome and my boss swears by it as the next big thing. I haven't done it and not sure I am willing to put the money into it but she insists it is the best ever.

Overall we implement alot of behavior therapy techniques that are autism specific (such as ABA, social stories, visual schedules, etc) and sensory integration techniques at home on a daily basis. That has been what helps the most. If you can have someone come in and help you set up these things in your home so it just becomes part of life it helps more I think.

Also, whenever a kid is acting up behaviorally I wonder about stress level and anxiety. Is his school placement the appropriate placement for him? Is he too stressed from school? Is there any other stressor going on through outside activities? My kids behaviors go immediately into the dumper anytime they get really stressed and the most frequent cause of this has been either school stress from a not appropriate placement or other stressful outside activities (even things like scouts and sports can do it to them). The other major cause is any changes. Starting a new activity, change in schedule, change in placements, etc.

HTH

Renee

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iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Thu, 02-16-2006 - 1:01pm

Thank you so much for sharing all of this info......a great help.

Here is the story why I believe son is having an increase of meltdowns....

Son does not currently receive any services in school.....I have signed the permission forms to get the MFE started....nothing has been done to this day. I have reminded the staff twice that I know they have 60 days to complete the MFE....everyone seems to be blowing me off. Son's teacher and the guidance counselor have been modifying his school day to the best of their abilities. They let him do his computer work alone in the library instead of with the whole class, they let him complete certain tasks at his own pace (instead of given a time limit), they let him physically move around the room during certain times (when reading a story or watching a program)....little things here and there....nothing formal. The main reason that he has been having such a horrible time this past week is because basically he has been running the show.....if he doesn't want to do his spelling pretest, they don't make him do it (one example).....so the teacher and the guidance counselor decided to get tough with him. They feel that they were not chosing their battles, in fact, they were just letting him win. So they decided to stick to their guns and make him do stuff that he has been refusing to do. This makes him meltdown faster and more intensely than ever.

So yes, the increase of stress and anxiety at school is causing this current situation.

The most frustrating part of all of this is that they claim to be clueless as to what to do to help my son. They claim they don't have any protocal (sp?) in place or even basic guidelines for educating a child with Aspergers. They also claim (on more than this occassion) that they have never (in all their many years of teaching) had a child this badly behaved before. The principal also informed me that asperger kids don't meltdown or rage like my son.....she really believes there is something else wrong with him.

When the principal called me yesterday to pick up my son and to inform me that he would be suspended, she first told me that he was suspended until "he received some intensive therapy". When I asked her what she meant by that, she just kept saying I needed to do more and that teachers and children are afraid of him and parents are starting to question how safe their children are around my son. (Note: son has had meltdowns for years but he has never been aggressive or destructive before this week). Anyway, by time I went to pick him up, she changed her mind and said he was just suspended for one day and he could return on Friday. But she mentioned the "intensive therapy" again. What I finally figured out - it was her way of saying she wants him medicated but that is against the law to state that so she was calling it "intensive therapy".

So that is where we are now. I am so angry.....they expect me to put my child on drugs as a first step.....I personally feel medicating is a last resort when all else fails.....nothing has been tried....no OT....no SLP......no aide.....nothing!

I called son's therapist and she agrees with me 100%, so the two of us are going to meet with the principal, teacher and guidance counselor next week some time. Hopefully I get push them into getting this MFE going so we can get an IEP up and running.

Regarding therapies......I called and spoke with one center that is around our house....they offer the horse therapy....something I want to look into....son is a huge animal person too! We also have a center around us that offers the metronome sessions....I have requested more info on that program. I even heard of a chiropractor that helps with anxiety disorders.....something to check out.

Again, thanks!
Christie

iVillage Member
Registered: 04-08-2003
In reply to: jinxgirl2001
Thu, 02-16-2006 - 4:06pm

Hi Christie,
I can so understand you. The meltdown and rage is the one that made me look into asperger. You just described my son's previous school. The Pricipal was the same way. Are you working? I work FT. But when I go to drop my son, I stay for 1/2 hr so he can transition well into the classroom structure. The current teacher is so nice and she lets me do this. She also makes the kid do the most difficult work of the day during that period. I help out kids you have problems with their work. Rarely it is my son though. So that tells me the work load is not the issue. Also we made the following changes.

- For breakfast, I give a high protien one like eggs, cheese sandwich, veggie burger (we are vegetarian).
- The teacher makes sure that he eats his mid morning snack
- I find him "out of sorts" when the classroom is noisy.
- Also his major problem is during unstructured time. My DH or I visit the school duringg lunch recess and we also told him to play with small group of kids. Large # of kids is definitely an overload on their sensories.

- I am thinking of putting him in some social group to learn the adaptation skill
- He also goes to OT and the therapist works with him on social issues as well.

iVillage Member
Registered: 10-03-2004
In reply to: jinxgirl2001
Thu, 02-16-2006 - 8:23pm

I think there is alot more you can do than wait. Maybe you need an advocate, there are free assistance programs if you can't afford one. The school is trying to pass the buck and they are legally required to evaluate him and provide appropriate services!!! I would run over to IEP board here at iVillage and ask Steph and the other moms there what to do to get your son's school to uphold IDEA and get your son out of jeopardy!!!

I wish I could help more, but we have always had our son in private schools designed for him, paid for by NYC board of Ed because of failing special ed programming. So we do not have these kinds of problems...

But I KNOW they are blowing you off, and the law is on your side here! It even seem to me that the waiting period for the eval is maybe shorter than 60 days? Who knows here?

Sara
ilovemalcolm

iVillage Member
Registered: 06-25-2003
In reply to: jinxgirl2001
Thu, 02-16-2006 - 9:19pm

For most evals the waiting period during the school year is from the written request (start count) to the evaluation COMPLETION and an IEP scheduled. The time period various per region. It can be 30 school days, 60 calendar days, or any combination inbetween. Generally it works out at about 60 days.

but the evaluations shoudl be completed in that timeframe, not just started.

Cristie,

You should formally request a full OT evaluation through the school for sensory issues. Play dumb, that you thought this is what the principal meant by 'intensive therapy" and as the seggestion came from the school, they need to provide it.

Play them at their own game, and document everythign in writing.

(Dear Principal,

Further to our conversation yesterdaay and your recommendation that my son recieve intensive therapy, I hereby formally request that the school district evaluate him for intensive clinical occupational theapy for severe sensory issues. I don't know why I didn't think of it before. I must not have seen the wood for the trees. Thank you so much for your helpful suggestion. There is an excellent center in . When can I expect to hear from them?")

Copy the Director of Special Ed or the schoool superintendent.

...that'll cure her constipation.

-Paula
(only kidding ...maybe)

-Paula

visit my blog at www.onesickmother.com
iVillage Member
Registered: 02-24-2004
In reply to: jinxgirl2001
Fri, 02-17-2006 - 11:56am

I agree....I'm a school psychologist. In our state, we have 30 school days (days that that child is in school) from the day consent is given to the IEP. Federal Law says 60 days, but states are allowed to shorten that timeframe.

You are being blown off and need to report directly to the director of special education and/or the superintendent in WRITING. (letter and email)

**I've found that school districts give a fast response when emailed since local new agencies (newspapers, etc) have the right to read school emails) HINT HINT. That's how I QUICKLY got the ball in my side of the court in regards to Jack's services in the school district.

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iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Fri, 02-17-2006 - 12:33pm

If they can't meet his educational needs then they need to pay for a placement or find a placement that can.

There is loads of information out there on AS. They could go to a training or conference, they could get some specialists to come in and give them some ideas.

Kids with AS do rage and meltdown particularly in stressful situations. I had one psychiatrist that tried to tell me that. She wanted to hospitalize Mike and put him on heavy meds. We never went back to her and he is doing better with autism specific interventions.

Check out the book "Asperger Syndrome and Difficult Moments" as well as "Asperger Syndrome and Sensory Issues". Both short books that speak to this kind of kid specifically.

The school recomends that he needs more intensive therapy for him to be able to be educated. If they said that then they are required to provide it. It is thier responsibility to provide him a free appropriate public education. If they specifically said he needs more intensive therapy to function in school then it is thier responsibility to provide it. They can't tell you to medicate but if she said this about intensive therapy then I would put it right back on her. "If you say he needs intensive therapy to be able to be educated in this school then what is the school going to do to provide this therapy? Do you intend on paying for ABA or similar interventions so my son can have an appropriate education?"

Also, if they can't figure him out or provide an appropriate education then I would start asking them to place him where they can. Start researching yourself for schools for kids iwth AS in your area. It may be possible to have the school pay for him to go to one of these kinds of schools.

I know what you mean about the meltdowns, rages and aggressions. Mike started that in 2nd and 3rd grade. Prior to that he had meltdowns but they weren't aggressive in nature. Fortunately, we moved from the magnet school to our local neighborhood school. They have never pulled this stuff with me. It was always what could they try that was new. What changes could they make to help him. And they never questioned his AS. OK, one RSP did but I think she had a personal interest. She has a dd that I swear is AS too and Mike's behavior can be scary so she questioned whether or not it was an appropriate diagnosis but no one else there did.

I have looked into it with many well respected doctors. Though some kids with AS also have mood disorders, Mike does not. He has mood lability and impulse control problems but so do many ASD kids. Mikes problem is that the world is so overstimulating and he can be so withdrawn and rigid that any change or overstimulation can send him into a spiral. His problems that cause behavior trouble are all specifically from his AS. Kids with AS can have rages and meltdowns particularly when under stress.

Renee

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iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Fri, 02-17-2006 - 12:39pm

Oh Oh OH, on timelines you girls wanna hear a good one?

I just found out that California is changing thier time lines from the current 50 days to the federal 60 days BUT what they are hoping to do it have it so that 60 days is for the testing then an ADDITIONAL 30 to develop the IEP.

They are going to try to get away with this legally by saying you can make an interim or administrative placement for those 30 days while developing the IEP. So it may take up to a full 90 days to get a decent IEP out of Calfornia districts. Fortunately that is calendar days and not school days because with vacations you are looking at pushing it close to a half year to get something done. If you don't request testing by the holidays you could realistically not have a full IEP developed until the next school year with new teachers who still don't know your child.

Yes, naturally families in California will be fighting this but you know how long that stuff takes to change. How HORRIBLY frustrating. AND my kids are due for thier triennials next fall when this will begin.

Renee

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iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Fri, 02-17-2006 - 8:11pm

Wow - Thank you everyone for your ideas and support. I got a meeting scheduled for Tuesday morning with my son's therapist, principal, teacher, guidance counselor and resource coordinator. I also called my son's ped to see what she thought about meds. She was totally outrage at how they are handling my son and his needs. She is going to try to move her early patient on Tuesday so she can come to the meeting as well. (Note: my son's ped is also a mom of a child on the spectrum - so she not only has medical advice but personal as well - she has been a huge asset to me). I also contacted two of the mothers that I meet at our local special needs support group - both are moms of asperger boys who attend the same school district as my son. At least one of them is going to be there for this meeting. I am relieved to say that I am going to have several people in my corner to back me up.

Katie - thanks for the idea of sending a letter (via mail and email) regarding this situation. Squeaky wheels get the grease - I'm starting to squeak!

Another thing that really ticks me off about the principal - 5 years ago, before she was the principal, she was the resource coordinator at the school. She decided who got what services and resources. She knows damn well what services/resources/support are available but she is trying to play ignorant.

Yet another thing that really makes me angry is that we purposefully moved to this city for the excellent public school system. I just recently found out that our school district has a reputation for (in the past) farming out special needs students. The psychologist that I see was offered the school psychologist job for this district (about 15 years ago) and there was a running joke that he would not have a difficult job because there were no special needs kids in the district. They have improved but there still is plenty of room for improvement.

Again, thank you everyone for all of your input and ideas. I'll let you know how the meeting goes.

((HUGS))
Christie

iVillage Member
Registered: 03-26-2003
In reply to: jinxgirl2001
Fri, 02-17-2006 - 9:01pm

Oh that so sounds like my SILs district. We were there when we first moved to California. It is rated very high on state standards as far as public schools but they ROT when it comes to special education because all thier emphasis has been on the rich typical kids and raising thier scores.

We moved to a more eclectic town with lower state standards becasue they actually had all the programs for autistic kids. The problem now is that they think they are "all that" and they aren't, lol.

The good thing about a district that "farms out" all thier SN kids is that getting them to pay for a special placement if you can find a good placement, getting them to pay is typically easier.

Renee

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