Topic : 01/17 Extreme Disorders

I watched the show last night, and my DS who is 11 and has been dx with AS since last year now wants to watch it but I am on the fence about it yet.  He has meltdowns, but there is always a cause I can pinpoint.  We are working to make him into a person who can live in society day to day, hold down a job, and take care of himself.  It is doable, the key thing is that it is just *harder* for these children.   

We spent years without a label, without interventions at school, and managed.  He has progressed through school, and while this year has been a little easier for mom, it's been not much different for DS.   

I realize that as the saying goes "when you've seen one child with AS, you've seen one child with AS", however I think the show lacked giving a more broad base of A) information about what comprises a diagnosis of AS - it's a lot more than screaming rages and unhappiness in school - otherwise 90% of our kids would have it and B) Alex was diagnosed almost 10 years ago - the ink wasn't even dry yet on the DSM for Asperger's yet - why not send him to a qualified psychologist for another work up.   

The parents never mentioned any kind of interventions, assistance, training, etc they've done for their son, yet he seemed to maintain good eye contact very happily, had a very broad smile, discussed how much he loved the show, and had good affect.  Also, I've heard my son and some other children we know with AS bemoan how they would like to be like other kids in this way or that way, but I've never heard one of them say they want to be "normal", because they are how they are and that is their baseline, their normal.   

Finally, I live in a "glass house" and would be the last person to throw a stone regarding the parents' yelling, however as a general rule, children with AS hate to be criticized, told they are wrong, or told no.  I am always looking for positive ways around those messages.  It seemed there was alot of  "button pushing" going on, whether it was because the cameras were there or if they were on their good behavior that day, I don't know.....   

ASPERGERS, ADHD, ADD, Mood Swing Disorder, what ever the name is not important.  What is important is getting help in a better and more definitive diagnosis.  Please go to brainmattersinc.com and request information for help in your area. 

Contact your Board of Mental Retardation, although your child IS NOT MENTALLY RETARDED they may information and services for you, we get some here in Ohio..... 

I don't care what Alex's medical diagnosis is if we can use the scans to pinpoint the issues and deal with them head on. 

It will be a long road but we are putting on our hiking boots and we are getting ready to trudge through the trenches. 

Keep in touch through the message board and by emailing us at kikione1@cox.net. 

Prayers to you. 

Karen 

My son Andrew is going to be 12 years old.  He has PDD (Non Specified). His situation has always been complicated and extreme.  He started showing signs of this disorder when he was 4 years old.  The past 8 years have been hell for him and me.  Andrew has always obsessed about things.  It is part of his illness my family has learned to accept.  The part of his illness we have not learned to accept is how the obsessions and meltdowns leading to violence.  He acts out and has injured me, his brothers, his cousins, his aunt, etc.  He has had multiple diagnoses.  He usually ends up in a psychiatric unit sometime between September and December.  When he was 7, I could no longer meet his needs. (I was going through a divorce and I needed to work full-time, no daycare would take him.)  Long story short, my sister eventually stepped in and now does theraputic foster care for Andrew.   

This year Andrew has improved tremendously.  This year is the first year that he has not been hospitalized.  His behavior always got in the way of school.  He has changed schools 4 times as each school determined that they couldn't meet his needs. Last winter, he finally went from public school to a special day school.  His grade level this year went from first grade to beginning fourth grade.   He even came home with a report card with A's on it!  Today is his first swimming lesson EVER!  I can't wait to take him.  He hasn't had a serious meltdown is months.  He meets regularly with a FST worker and he goes twice a week to Options (stabilzation therapy).  We have begun to reduce his medication.  He went from 20 pills a day to 2 pills a day.   

The best thing that came out of this is he was so close to going to a residential school.  Instead he has been able to stay in our community.  I get to see him all the time.  He is happy, healthy and "normal".  I never thought Andrew's life was going to be normal.  I was once told that Andrew would never finish school, drive a car, and would probably always live in an assisted living facility.   There is hope after all!  

Val feel free to email me at kikione1@cox.net.  Saying that let me tell you your fears are mine and that of so many others.  Guilt is doing you or I any good so we need to work together to get rid of the guilt. 

A friend/therapist reminds me each day to stop saying what if and just do it.  That's what got me to write to Dr. Phil, that's what got me to follow through with my local media and that is what has got me to plan on writing a book and creating a forum for Parents and Family Members. 

We need to bond together and get help not just for our kids but ourselves as well. 

I was told today by the Minister I work for that my husband and I need to become a united front and work together.  We cannot go down different roads while we seek wellness. 

This will not be easy but if in the end we want what is best for Alex and makes us all sane we will find a way to make this all happen. 

You are a SPECIAL MOM so take a breath and know your son is lucky to have you because you cared enough to watch the program and share your thoughts. 

keep in touch 

http://www.asperger.net/  to every parent with an AS child - this is a fantastic website for books on asperger's.  There are a few which specifically deal with meltdowns which have helped us. 

Please remember that when your child is at that meltdown stage, your child can only get worse if you yell back at him/her.  Notice how Alex's mom was screamining at him, and it made things worse (although I have learned the hard way not to yell because I have done that too).  The first thing to do is to be calm, sound calm--create an atmosphere of calm so that your child can "unmelt".  Talk quietly, if at all.  Listen to what your child is screaming.  Say "It's okay....calm down...."  Say very few words at first and talk quietly.  Your child WILL calm down.  Then, leave him/her alone to wind down by himself and wait outside his room (to make sure he and everyone else is safe).  After awhile, talk to him/her about why this happened, what is bothering the child, and what he/she needs.  Then, much later, you can sit down with your child and tell him that his prior behavior was not appropriate and come up with one or two alternative behaviors.  Write down a plan with your child for what he/she will do the next time he is feeling a meltdown coming on.  Practice the alternative behavior with your child.  This can only be done, after the child is completely over the meltdown and wants to discuss the situation.  It might not be until the next day. 

Good luck to everyone.  There are some books on this website that discuss how to deal. 

My son is 14 with Asperger's.  We've had our ups and many downs. We have to educate ourselves and everyone around us to make their lives easier. I have read some wonderful books that have helped me to understand how people with Asperger's see life verse how we see and think. The reading has helped me to understand why my son does certain things and why he doesn't, which in turn has made the home environment easier. My son is very intelligent and so is Alex. Boys with Asperger's are emotional well behind those of their own age. Alex is a handsome young man with such potential for success. I truly believe that our boys will find there place in life and blossom. 

I would be more than happy to give you the titles of my helpful books. The best of luck and life will get easier! 

Laurie 

My son 15 year old son has Tourette Syndrome, OCD and ADD.  You are wonderful, caring parents who are trying to help your son the best way you can.  It is  a very lonely road that no one should judge unless they walk in your shoes.  I once read in a Tourette Syndrome article, why is it that a school, etc. will have compassion for  a child who was involved in an car accident and sufferred a brain injury and not have the same compassion to a child who has been living  with a brain "injury" since birth.  All we can do is advocate for our children.  Counseling will be a blessing for your family, it has for ours.