Topic : 01/17 Extreme Disorders

 dont forget

www.aspiesforfreedom.com
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Definitely get him tested.  Symptoms sound familiar.  I have a 12 year old son who was diagnosed at age 9.  After the diagnosis, everything made sense and fell into place. 

  

Good luck. 

I have a son who will be turning 16 soon who has asperger's syndrome, we have been through similiar situations as the guests on your show.  We found a family counselor whom has helped us to understand this is not his fault nor in our control to change.   We have seen great progress in his behavior, attitude and ability to control is out bursts.  We all still face the challenges of daily life and the the syndrome, my son is not usually violent but shows tendancies toward self punishment.  This is the area that worries me.  I believe he is using drugs, not heavy drugs but pot.  I fear he is heading down the road to self distruct.  In our family there seems to be a pattern of neurological disorders, since my son has been diagonosed for 8 years I can now look back at my brothers and see some similiarities between their struggles and my own son's issues, I know have a nephew whom is 3 years of age (my brothers boy) who is believed to have autism with seizure disorder.  The doctors mentioned testing him for "Fragile X Syndrome". I know very little about this syndrome but feel it needs to be looked at for our situations.  If anyone knows about this syndrome or about a doctor who deals in this area I would so appreciative of that information.  Over the past 5 years we as a family have been through alot of downs, we need some ups.  We lost our mother to melanoma cancer of the brain , this has effected all of us in our own way.  My son was very close to her and i feel he hasn't dealt with her death.  As i have learned from family counseling it is important to establish as sense of predictability and routine to our lives so that our son feels secure and has a place to break down if he needs to.  We try to assist him in establishing a system so he can handle the daily pressures of school, kids and all the teen ager things.  As he has gotten older it has been getting better, and worse at the same time.  I feel we still need more help for him and guidance with my nephew as a family.   I would like to thank all of you who respond I will do my best to answer any one 's question that need info on asperger's and what we have found to be a help 

  

Peggy 

How sad was all of that... My heart goes out to them. 

I have two sons that have Autism Spectrum Disorder. My oldest is 15 and all of his life he has been tense and worried, he even was born looking worried. He had colic, and night terrors. He didnt show any signs of PDD or any autistic tendencys what so ever. However, there was something wrong. The doctors said he was fine, so for all of his life we did nothing to really help him. He however would have outbursts we call his frothing at the mouth time. As long as I would let him alone, he got over it really quick. He controled himself at school and in social situations, no one guessed or even know now that there is anything off. My other son is 10, he was not talking and he had some frustrating behavior and some fixations so when he was 2 he was diagnosted with PDD-Nos. He has gotten help and now he is a very high IQ and strong non verbal skills. He shows now no signs of frustration or outburst behaviors. 

I was so happy to see the show today, it made me sob though just to finally see that I was not alone in this situation. 

I have always worried more about my older son with his outburst (although not as drastic as Alex) still he can become "over the top". I will be seeking neurologist to look into him. The sad thing is, is that in the health sector (insurance) PDD, Autistic and Aspergers is a behavior disorder not a physical disorder. What a problem. 

I would love to get DNA testing done, if it is a maternal problem, it would be nice to have that information. I was going to be in a testing group for research for parents with more than 1 child with Autisic Spectrum Disorder from New York University. 

Again, it was really great to watch it and it did open up a dialog with my son about the behavior. 

  

i HAVE TWO DAUGHTERS WITH NEUROFIBROMATOSIS, ADHD, AND AUTISM.... I KNOW EXACTLY WHAT THIS MOM IS FEELING..  I AM A SINGLE DISABLED MOM DEALING WITH TWO KIDS ON MY OWN..   JUST WANTED THIS MOM TO KNOW I UNDERSTAND .. MOST PEOPLE DON'T SEE IT WITH THEM OR WHAT GOES ON.. SO THEY DONT' UNDERSTAND..  

  

I FELL ALONE WITH THIS.. SOME HAVE AUTISM /ASPERGERS  OR ADHD OR NERUOFIBROMATOSIS.. I DEAL WITH ALL 3 OF THEM 24/7  

  

MOM OF 2 NF, ADHD, AND AUTISM  

My son John is 8yr. He was diagnosed with tourettes and Asberger's last summer. It was a relief in a way because there was finally a name for the behavior and learning disabilities. At the same time we are having a hard time with his self esteem and his social skills. We don't know what each day is going to bring.  I decided to take in a few kids John's age to help him with his sociall anxiety and aggression. This has helped some, but you never know what to expect from min to min.  To make things worse, they put John on Orap for his tics, this has made him gain 20lbs. Now the adderall he's on has leveled him out and now he is not gaining, but staying the same. So the bulling has gotten worse instead of the kids on the bus just hitting and spitting on him they now call him fat and they have always made fun of all his tics.  I wish there was something more I could do for him. 

HI.. I AM A MOTHER OF AN 19 YR. OLD ..HE WAS DIAGNOSED WITH ASPERGERS SYNDROME AT THE AGE OF ABOUT 3 ..HE STARTED READING THEN AND THE OFFICIALS AT HIS PRE-SCHOOL PICKED UP ON SOMETHING ..THEY THOUGHT SOMETHING WAS VERY UNIQUE ABOUT CHRIS ..THEY HAD ORIGINALLY  THOUGHT BACK THEN HE HAD ADHD BECAUSE OF HIS MOVEMENTS AND ACTIVITIES ..BUT THE ACTUAL READING CAUGHT THERE EYE ..HE WAS DIAGNOSED THROUGH THE OFFICIALS AT SCHOOL WHO WANTED HIM TESTED THROUGH THE YALE CHILD STUDY ..HE WAS HIGHLY INTELLIGENT AT HIS AGE AND KNEW THAT THIS WAS NOT NORMAL ..HIS MEMORY IS AMAZING ALSO ..ONCE HE GETS ON A SUBJECT HE RUNS WITH IT AND KNOWS EVERYTHING ABOUT IT ..ESPECIALLY THE PRESIDENTS OF THE UNITED STATES ..THERE TERM LENGTH ..ETC .. HE MAY JUST READ SOMETHING ONCE WHEN HE WAS YOUNGER AN REMEMBERED IT ..IT WAS AMAZING TO HEAR THINGS COMING FROM HIM ..WE ALL THINK HE IS AN AMAZING CHILD ..THEN HE GOT INTO DRAWING ..EVERYONE WHO KNOWS HIM IS AMAZED WITH WHAT HE CAN DO WITH A MARKER ..HE LOVES THE BLACK PERMINANT ONES .. HIS ASPERGERS AS I AM READING ON THE OTHER QUOTES PEOPLE HAVE PUT UP IS TOTAL OPPOSITE OF CHRIS ..HE IS THE MOST WARMEST, GENTLEST PERSON EVER .IF HE HUGS ME ONCE A DAY IT'S ABOUT 10 TIMES ..WHENEVER HE SEES SOMEONE HE IS EXTREMELY RESPECTFUL ..THEY PICKED IT UP ALSO BACK THEN WITH HIS EYE CONTACT ..HE NEVER HAD EYE CONTACT WITH ANYONE ..HE WOULD ALWAYS LOOK DOWN AND NEVER TOWARD WHOM HE WAS SPEAKING WITH ..WITH THE HELP AND GUIDANCE OF HIS WONDERFUL SCHOOL OFFICIALS ..HE GOT THE GUIDANCE , TEACHING THAT HE NEEDED ..HE IS A DIFFERENT PERSON THAN HE ONCE WAS ..WHEN HIS EXTREMITIES WERE VERY REAL ..HE'S COME A VERY LONG WAY .. MEDICINE WAS MENTIONED ONCE BUT WE DECLINED IT AND WE SEEM TO HAVE MADE A GOOD CHOICE ..I DO FEEL FOR OTHER PARENTS THAT ARE GOING THROUGH THIS THOUGH ..OUR CASE COULD BE WORSE ..BUT IN THE VERY EARLY YEARS FROM 5 YRS. TO ABOUT 10 ..THOSE WERE PAINFUL AND HEART WRENCHING TO HEAR TEACHERS AND PSYCIATRISTS HEAR THINGS YOU THINK IS UNREAL ..WHAT THEY SEE IN SCHOOL AND HOW THEY SEE YOUR SON .. GOD BLESS EVERYONE ..THANK S ..LAURIE

 I have a strange theory about these types of conditions.  AS, and certain other neurological conditions that are characterized by  well above average intelligence quotients and savant like abilities tend to cause abnormal brain patterns.  The way I figure it works is your brain is like a giant electircal circuit and when it's hyper active in certain sectors it just overloads and causes erratic behavior.   That's the best explaination I can figure.

I felt so bad for your family, it was hard to watch how much Alex seems to hate the way he behaves. It's like he feels guilt and shame for being the way he was born.  I felt so bad that you and your husband suffer so much along with him.  You all definately need help managing Alex's illness. 

I just want you to know that you should NEVER blame yourself for his condition.  You didn't wish it on him, you didn't ask for it.  It just happened, and like most parents you weren't expecting it so you weren't as prepared as you wish you had been.  That's okay.  It isn't too late.  I think you and your husband have done the best you could with the tools you had available.  Other than his behavioral outburts due to his condition your son seemed like a good kid.  So you should pat yourselves on the back for that.

I hope in the future your family will gain insight into Alex's condition and that you'll all find better coping strategies for yourselves and your family.  Good luck in the future :)

I too have a 7 year old son with Aspbergers Disorder.  He was diagnosed at age 4 with ADHD, which I knew he had a 75% chance of inheriting from my exhusband.  He too had rages.  He for lack of a better word "destroyed" his daycare classroom.  I was brought to my knees in tears over how my little boy could possibly do so much damage.  He urinated on the floor, hit, kicked, and bit every teacher in the school one day.  This was all in the daycare he had been at since a baby.  He was removed from care there and it broke my heart.  A church affiliated daycare was willing to help me with the new challenges that awaited me.  He was on medication and they were willing to try.  After 2 weeks he threatened to kill the teacher.  He was again removed from care.  After that, I left my job to work opposite shifts with my mother.  She would watch him while I was at work and I would watch him when she was at work.   

  

After all those emotional roller coasters.  (It does take and emotional toll on parents)  People tend to dismiss the fact that parental love is supposed to be unconditional and I feel I am no exception.  I just didn't know what to do.  We contacted the local Head Start program.  They saved my life.  I was lucky enough to have them advocating for us.  Head Start refused to allow my son in the school without me or a TSS (Theraputic Staff Services) in the classroom with him.  He is being treated first and foremost for his ADHD and for the last year and a half his behavior therapy has been to mostly aid his Asperbergers.  I am lucky and thankful that Head Start was able get me in touch with Intensive Case Management services, TSS Service, Behavior Therapy, Psychological therapy and Psychiatric Therapy.  All of which have given me a completely different child from where I started at.  It was hard to believe my happy sweet boy was so angry and hateful then.  I fell into depression blaming myself for it.  Through therapy for him and me it is worlds better. 

  

I think it is important that people know the hardest part for kids with Asperbergers is relating to peers and social interation.  My son has gone 6 mos. without any therapy other they Psychiatric.  Unfortunately, age 7 and first grade have introduced a new level of maturing that he isn't grasping or keeping up with the other students.  Friends he once had are not as interested or avoid him. It hurts to see him unhappy.  I am expecting my second child in April as well which will be another emotional disenchantment for my son which we are in the process of getting invasive services available to him then to help him and me transition into it.   

  

I don't think there was enough mentioning of how behavioral/cognitive therapy will definately help.  Also, enough emphasis was not given to how Asperbergers has many spectrums.  I do agree that the emphasis on the high level of intelligence was lacking.  Most Asperbergers patients have an above average intelligence.  My son excels at school.  I also know that a therapy that worked last year with my son my not work when he is 16 years old.  It warms my heart to see and hear how well other child are doing.  Thank you all for sharing.  I don't know anyone with a child with Aspbergers in my area.  I do agree that early intervention was and will be key in helping my son evolve and being well adjusted.  Like all kids, ours have good days and bad.  Our bad isn't the same as other families but it's the bad we know and have learned to deal with.  At least I feel I have.