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Messages By: vlombardi
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January 18, 2006, 10:47 am PST
 Quote From: karen_kiki Alex can be the most wonderful young man and very much in control however when his meds don't work, or he oushes the therapy out of his brain, which is not always aware he is doing it, he will have these fits, rages and creates complete disruption in our lives, that includes his own.
Alex is a very smart young man and very talented. He has so much potential but our fear in life is that one of his rages will bring that all to a halting end.
As any parent wants the best for thier child so do we.
We hope that you will find some answers in our story and that we can continue to email and contact each other. We are not alone and we and our children deserves answers as well as support to make it one day at a time.
My thoughts are with you as we take this journey in life.
I met someone a few years back who chose not to be my friend. Her reason was that if we didn't have Special Needs Children we would not have met or had anything in common, and she didn't want our children to link us together. I feel very sad for her as friends are important in life, and friends who understand and care are invaluable. I am reaching out to be your friend as we all need support.
Karen Karen,
As I watched your story yesterday I felt you were me. Everything you said is what I am going through also. My 12 1/2 year old son, also named Alex, was diagnosed with Asperger's several years ago along with ADHD, OCD, a touch of Tourette's even. My Alex even looks like your Alex! Anyway, my life, like yours, has been completely turned upside down. Everything we do revolves around our son and how he will behave in public. I have two younger daughters who suffer because of their brother's issues. My relationship with my husband is strained to say the least, I am now on antidepressants and I am scared to death. I worry constantly about what my son's life will hold. I worry constantly about how he is doing in school. I dread the phone ringing because I know it is the school calling about another problem. Alex has been terribly bullied for several years. The school tries to help but they are completely incapable of giving my child what he really needs. Alex has voiced his desire to die before. I worry that he would maybe follow through with this one day. He KNOWS he is different. He KNOWS he has no friends. Unlike some kids with Austism, Asperger's children are completely aware of their differences and their inability to do anything about it. Sometimes I think that is worse. People are so cruel. The comments made to me about my son are rude, mean spirited and heartless. Because he looks normal they feel they have a right to say something to me. Sometimes I think if he had a visually apparent disability that it would be easier.
I pretty much knew the minute my son was born that things were not right. He had a traumatic birth with fetal distress, cephalopelvic disproportion, muconium aspiration and oxygen deprivation resulting in an emergency c-section. He cried nonstop for years and never slept. We have come a long way in finally getting this diagnosis but I feel such guilt about not doing more faster. I always replay the "what ifs" in my head. It is a terrible way to live.
Alex at 12 has no life except school (which he hates) and his video games. He likes to go to movies but that is about it. He has been on medications since he was 3. Now he is on Adderall (for his hyperactivity), Celexa (anti-depressant) and Clonidine (because he does not sleep). We tried Abilify for 4 days but the sideeffects were so bad and dramatic that we had to discontinue it. What meds is your Alex on? Oh, another question. After Alex has his functioning MRI, what kind of treatment will they do on him? I would love to do this for my Alex but we have an HMO and they are not very supportive about diagnostic studies such as this. I need to know that there is something else I can do to help my son. When I think about the future I get sick to my stomach. I am very scared. Thank you for letting me get this off my chest. I hope to hear from you soon, Val
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January 18, 2006, 2:20 pm PST
Quote From: robin322 I began investigating Asperger's back in 1996. Because AS is a relatively "new" (for lack of a better word) neurological condition, not much was known about it or the range of behaviors associated with it. I applaud each and everyone of you for having the courage to speak publicly and aid in the awareness of Asperger's Syndrome!
Not all that long ago the DSMVI (the diagnostic manual for clinicians) changed it's criteria to include AS on the autism spectrum. Children diagnosed with AS are entitled to receive special education services from the district in which they reside. Request a meeting with his teachers and support staff to address his needs and establish an individualized education plan (IEP). Federal and state law guarantees that your son receive a free and appropriate education. You are entitled to testing at district expense. If you are not satisfied with the outcome, you are entitled to an independent educational evaluation (IEE). The school needs to be providing you with educational alternatives.
Disability -based harassment or bullying is a particular problem for AS kids. Most districts have a zero tolerance policy against bullying. Illinois has a fairly progressive educational system and your district should be helping other children appreciate your son's unique gifts. He should also be enrolled in social skills work groups where he is mentored and protected.
With the right environment, your AS child can flourish. I provided my son's school with many of the Coulter videos. I found out early on that many of his teachers had no clue when it came to the environmental stressors that played havoc with my son's behavior. Sometimes parents have to initiate "educating the educators."
As far as medication is concerned, we use a combination of Concerta (stimulant) and Stratera (non stimulant) for attention issues and Effexor for the OCD behaviors and depression, also Clonidine at night to help with sleep. Sleep is sooooo important!!
Keep him active and remember, playing games like XBOX Live creates many virtual friends! I hope this helps. What would we do without the Internet?
Robin
Hi Robin,
Thanks so much for all that info. My son does have an IEP but he is not in special ed anymore because he can handle the work (except handwriting and writing papers). I am not happy with the lack of help he is getting in those areas. I am also not happy with the so-called social skills group he is in 1/2 hour a week. Alex tells me they just play games. What exactly is an IEE. I have Alex's big IEP meeting on Friday and would like to go in with a little knowledge about what I can ask for.
What are the Coulter videos you were talking about? I know that I have given many teachers different books on Asperger's because they have no clue about these kids. Also, the bullying has been better in the last year but there are many different kinds of bullying that are not all physical. Just the social isolation alone is devastating. My son eats lunch alone and sometimes curls up in a ball on the ground with a book so as to block out the noise of the other kids. He has tons of sensory issues too.
Your son has sleep issues too? Alex did not sleep for over 4 years more then a few hours at a time. God bless Clonidine!!! His behaviors (and ours too) improved greatly once the poor kid got some sleep. Another question, did your son every talk about wanting to kill himself? This happened 2 years ago when the bullying was at it's worst but I believe there is a higher incidence in suicide among these kids and I am scared.
One last thing, my Alex has all the game systems except XBOX 360. I have been afraid to let him do the XBOX Live because he does not know who he is talking to. Do you feel it is safe? I would love my son to have a friend even if it is an online friend.
I hope to hear back from you soon and thanks again for all the info, Val |
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