I HATE the IEP meetings. They pretty much run all over me. I have social issues and its hard enough for me to attend the meeting. Once I'm there I'm pretty much nodding and agreeing while praying that they dont notice how bad I'm sweating or how red my face is. I wish I had someone more knowledgeable about the laws, IEP's, etc. that I could take in there with me.
I swear when I take him to school I feel like I'm dropping him off at a daycare center. I hear other parents talk about how much their children learn at school and what they're using to teach them and then I look at my sons class and its such a disappointment. I'm currently looking for therapist who will come out to the house where we live.
I forgot to ask..
have any of you had your child on medications and then decided to just let it go?
Not all at once, but with the doctor of course.
William has been on meds since he was 3 and now even though the doctor has doubled his dosage he still seems to be back at the behavioral level we started at.
I'm wondering if the medication is doing him any good or if it might be holding him back in some way. Its probably helping him more than I know with his focusing.
Rachel,
I know what you mean about IEP meetings, they can be very intimidating and difficult to get through. Do you have anyone who could go with you for support? I don't know your financial background, but if you can afford it , an advocate (a good one) can be a great help. They are expensive though. (We saved up and had one attend one IEP meeting) I had one for just one IEP meeting, and it changed how the school delt with my son. Now they are on their toes and the meetings are a little easier even without the advocate there. I guess they know that I'll bring one if needed, and they hate that.
best of luck.
kelly
My psychiatrist told me that the three main first line of treatment for autism is Invega (long acting Risperdal), Risperdal and Abilify...they are all anti-pychotics...in my opinion, these meds address the issues of autism best...reduction in sensory issues, reduced aggression, stabilization of brain chemicals, increased focus...for those who have older kids, Invega works great for us and he only needs it once a day..my 10 yr old cycles up and down all day long with fits and this med gives him a constant flow of medicine...it works better than most long-acting ones!!!I never heard about Invega. I looked it up and it has some really bad side affects. The one that concerns me the most is that it can damage the kidneys. I would be afraid of this one. My grandmother was on Celebrex and she went into kidney failure from it. She is now on permanent dialisis.
Also, for the parents that mentioned the schools just thinking the kids are behavior problems, are any of them on IEP's. I fought the schools for 4 years to get my son into the correct program. Most of his school day he is with between 1 to 3 children with a great behavior modifaction set up. He has 7 pages they follow. Then when they found things that work, they came to our home to train us. It has been amazing. I strongly believe in ABA therapy. His entire program is based on it and then once the task is learned, he is mainstreamed with it.
I hope you don't mind my 2 cents but my heart breaks that our children have to be on so many medications and these awful school systems that refuse to help our children. Always remember that all school systems have to proved (FAPE) Free and Appropriate Education. Never let them use $$$$ as the excuse.
I took Williams father with me once, but I might as well have taken a bag of rocks to sit there with me. lol
[QUOTE=gdanes]I HATE the IEP meetings. They pretty much run all over me. I have social issues and its hard enough for me to attend the meeting. Once I'm there I'm pretty much nodding and agreeing while praying that they dont notice how bad I'm sweating or how red my face is. I wish I had someone more knowledgeable about the laws, IEP's, etc. that I could take in there with me.
I swear when I take him to school I feel like I'm dropping him off at a daycare center. I hear other parents talk about how much their children learn at school and what they're using to teach them and then I look at my sons class and its such a disappointment. I'm currently looking for therapist who will come out to the house where we live.
[/QUOTE]
Hi Rachel. I'm sorry that you do not have someone that has been going with you. We got envolved with our local MRDD board (Mental Retardation and Developmental Disabilities). We were blessed with getting a wonderful advocate throgh them. We also used the coalition for a lot of free legal advice. I think that most states have some form of one. Here is Ohio's. I'm thinking they can help with directing you.
They sent me a book called Building Communication through letter writing. I followed it to a T. I was able to go all the way to due process until I had to get an attorney and then won the special program for my son.
The PTI is also a great source to get valuable information and assistance to receive your childs FAPE. Here is the link.
http://www.yellowpagesforkids.com/help/ptis.htm
If you need any help at all on starting the process, please don't hesitate. I don't have much time on the computer but on the weekends, so please be patient with me.
Ohhh... here is another great link for understanding your Parental Legal Rights & Responsibilities, and Procedural Safeguards. This link is awesome.
http://gradda.home.isp-direct.com/sp01pare.html
[QUOTE=gdanes]I forgot to ask..
have any of you had your child on medications and then decided to just let it go?
Not all at once, but with the doctor of course.
William has been on meds since he was 3 and now even though the doctor has doubled his dosage he still seems to be back at the behavioral level we started at.
I'm wondering if the medication is doing him any good or if it might be holding him back in some way. Its probably helping him more than I know with his focusing.
[/QUOTE]
What medication's are you talking about??? Alot of them cause cognitive dulling which can make behavior problems worse.
William is on Risperdal. They just doubled his dosage right before school started back and he has shown no changes whatsoever.
[QUOTE=gdanes]Thanks for the links! I'm going to check these out now. Hopefully I can find something in my area that will help. :) [/QUOTE]
Your very welcome. How much does your son weigh and how much Risperdal does he take. I hate when a doctor just doubles a med. The children's system needs to adjust gradually. I only add in small amounts at a time to see when I start to get a reverse affect.
Here is a list of the most known side affects of the meds our children take...
Psychostimulants: Ritalin, Dexedrine, Cylert, Adderall
Known side effects: Decreased appetite, insomnia, gastrointestinal pain, irritability, increased heart rate, paradoxical worsening of symptoms
Anti-Depressants: Paxil, Wellbutrin, Imipramine (Tofranil), Nortriptyline (Pamelor), Luvox, Remeron
Known side effects: Cardiac complications, impulsiveness, psychosis, mania, seizures, high blood pressure, confusion, insomnia, nightmares, rash, tics, tremors, loss of coordination, anxiety, sexual dysfunction, abnormal skin sensitivity to sunlight
Mood Stabilizers: Lithium (Lithobid), Depakote* (Anticonvulsant)
Known side effects: Gastrointestinal complications (nausea/vomiting, diarrhea), tremors, decreased white blood cells, malaise
*Side effects of Depakote also include double vision, drowsiness, loss of coordination, rapid eye movement, skin rashes
Beta-adrenergic blocking agents: Propranolol
Known side effects: Decreased heart rate, Raynaud's phenomenon, lethargy, impotence
Neuroleptics: Risperdal, Zyprexa, Seroquel
Known side effects: Acute irregular muscle movements, cardiac arrhythmia, motor restlessness, sedation, cognitive dulling, social withdrawal, Tardive Dyskinesia, liver toxicity, Neuroleptic Malignant Syndrome, sudden death
I highlighted cognitive dulling. My guess is that your doctor raised his Risperdal to quickly for your son's system to handle.
What type of behavior are you experiencing with your son Payne?Is the following medications used for psychological disorders the only option for children with Autism...
Trazadone (NSAID and an antidepressant)
Risperdal
Abilify (antidepressant)
Lexapro
Clonidine (ACE)
Geodon
Zyprexa
Celexa (antidepressant)
ADDeral
Xanax (NSAID)
Luvox (MAOI)
Cymbalta (antidepressant)
Lithium (prescibed vitamin)
Depakote (anticonvulsant)
Etcetera.
I'm twelve also. I have more of a high-functioning Asperger's Syndrome. It's very irrevelant to 99.99% of people. I take Clonidine to lower my blood pressure enough to calm the excitement. I've heard psychiatrists and neurologists have been topping the medication on them. That's why I'm curious if it really works for other children.
MY 12 YEAR OLD SON TAKES PROZAC FOR ANXIETY, IT HAS WORKED VERY WELL FOR HIM. HE HAS ASPERGER'S SYNDROME. Good luck with your appt tomorrow to. We have our appt tomorrow also. Hopefully, we will both get some where tomorrow. I'm going to talk to his doctor tomorrow about this. I've wondered about just trying to take him off of the meds completely and see how that goes. I was thinking doubling the dosage all of a sudden would be a bad thing. My 10 yr old has been on Risperdal since 7..his aggression and focus issues have been a challenge...over time he was on 3 different meds to control his behavioral issues as well as beh. therapy...I started with an osteopath in February and within 3 mo he was weaned from all his meds with the help of herbs, essentials oils, cranial/sacral therapy and GFCF, Low Salicylate and Low Oxalate diets...within 1 mo off of Risperdal, the aggression returned and we have been spinning in circles all summer with this non-medicated state...We just started him on Invega (long-acting Risperdal) and the change is immense...no sleepiness, change in personality, just calm/peacefull and has been able to transition better...I am using Inositol (IP-6) as well to control his OCD tendencies as well...How old is William and how long has he been on Risperdal??? I found that Risperdal did not alleviate my son's issues like Invega does!!!Daniel takes no meds. He uses B complex/valerian root/amino acids/glyconutrients/c/probiotics. We did depakote for a while. We figured out no corn products no hyperness. School has to take kids without meds. We prefer therapies to learn the control. Have you here done any SI therapies?NATURAL DOES TAKE LONGER TO WORK!
OILS RUB THEM ON THE FEET IF THEY WILL NOT DO THEM BY MOUTH. THEY GO STRAIGHT IN TO NERVES IN THE FEET.
I was surprised but the Adderall actually gave Payne facial tics! We tried a number of stimulants just to realize he couldn't take any of them...we went with the clonidine again. William started on Risperdal when he was 3 and he just turned 8. I've been reading the reactions and side effects of Invega and Risperdal which is why I wanted to try to remove him from the medications. :(Adam is on Abilify and Prozac, also Adderral. We have found recently that the Adderral was really helping with his impusiveness. We hadn't been giving it to him on non school days, and boy have we noticed the difference. He gets it all of the time now.
As for IEP meetings. I am not good socially either. You need the book Tzoya always recommends. From Emotions to Advocacy. Read it and re-read it. Go back on this site and search for IEP and Tzoya's name. She is now a professional advocate and has great advise. Also search www.wrightslaw.com for your state and learn all of the laws. Knowledge can lead to comfort. Believe me. It has helped me immeasureably.