Topic : 01/17 Extreme Disorders

Hi, 

  

 I saw the show today by cooincindence and was a bit dissapointed.  My 11 year old son was just diagnosed with ASD and has also been diagnosed in the past with mild Sensory Integration Dysfunction.  He doesn't have the bad anger issues as your son does but rather like the email from Hootas? and  gets overloaded ath days end and develops an attitude of intolerance towards others. 

  

He has a problem with classroom outbursts of inappropriate strange sayings or singing with refusal to stop and also social interaction problems.  He is highly intelligent and a gifted artist with a heart of gold. He really would prefer to be left alone which his very hard to watch as a parent.  You naturally wish your child to be blessed with friends and to play with them.   

  

I would love to see more doctors and schools work with families in the area of training  families and teachers how to deal with these problems together and can only imagine the  amount of couples who divorce over this parenting cahllenge.  Living with a child who has Asperger's can be so frustrating especially when out in public as it can be embarassing.  It definitely puts a strain on your marriage.  The constant battles leave you with no energy for your spouse or other children.  We are currently working with a counselor and trying to develop some at -school behaviour contracts so we'll see if we go anywhere.  I wish you all the best with your son and hope to see more about Asperger's on Dr. Phil in the future.  ep 

Dr. Phil Thank you for your show today on extreme disorders, my son has TS and it took several years to diagnose him.  I appreciate the public awareness that is occurring to bring understanding to these amazing disorders. High Five to Craig for coming on the show, getting on that plane and speaking to the public about what he has been through.  I am so happy they plan on having children as well, they will have a wonderful set of coaches and mentors ready to go…..  I also appreciate the parents and child with Asperser’s Syndrome.  They were all very brave to been filmed in their home.  They will help so many families by their appearance.   God Bless them for staying together as parents and loving their child despite the difficulty the disorder has brought to their home.  I wish to  add a bit more awareness to TS and that is not all people affected by TS have “EXTREME” symptoms.  By that I mean that not everyone curses or suffers from extreme tics.  My advocacy is to help bring awareness on a broader spectrum. As Craig mentioned today they wax & wane.  Sometimes the symptoms act as if they completely disappear which gives society the impression that they can control TS.  In our case, throat clearing, neck tics, blurting out (without cursing), arm tics…….not to mention the other secondary disorders which most times accompany TS for us it is OCD. They change, they increase in severity, decrease in severity and then sometimes disappear and reappear as another new tic? Our society is so quick to place a band-aid on a child and not willing to take the time to properly spend trying to figure out what is going on with a child, we want to  right now and in most cases that simply cannot be done with a test or a visit, it is situations over a period of time or years and finding specialists that are committed to helping your child.  I have been blessed to finally gather a wonderful group of physicians that administer to and lovingly handle my child and that took many years.  I hope that on the next segment speaking on this topic there will be a variety of situations given to help many parents who are trying to help their children.  I love my son and am very proud of who he is which is just wonderful.  Thank you Dr. Phil, High Five on another GREAT JOB J 

  

 

Kimberly 

 If I were you ,I would  take him to a different phsychologist , and get him rediagnosed. I have 2 children with asperger syndrome. My son is very hyperactive, but we don't have him on any meds. I have learned calming skills and taught the school  what to do also. Sometimes they work and sometimes they don't lol. I feel that meds just cover up the problem and that children like this need to learn how to calm themselves down. Its hard to find the right people, that know what they are talking about. My son had 3 different diagnoses before I took him to childrens hospital developmental unit and they finally gave me some help. I hope you find something out soon.        

                                                                                                           best wishes  

You bring up many real concerns.  For ongoing medical insurance coverage check with your county's MRDD board.  If his situation is considered to be a lifelong disability - often it will be covered by Social Security or Medicare thru them. 

For entrance into the working world - Again start with your local county MRDD and also look for "job coaches".  They will have invaluable information as to employers most sympathetic about working with individuals with special needs.  They'll also help with interviews, filling out applications, job training, etc. 

For concerns about independent living - ask at the county MRDD for referals to possible group homes in your area.  Lutheran Social Services have an umbrella approach and offer senior care facilities and MRDD homes, and other group living situations to accomodate special needs adults. 

For providing an ongoing advocate for him, look into a "Special Needs Estate Planner".   

Much of what you wrote could have been Me writing my own entry. My son is 16 and has finally gotten a Dr to actually write Asperger's in his file. I've had all the feelings you wrote, including how others give you that look when you mention the problem. Even Drs have treated me like i was crazy, when i told them about Gabe's autistic behavior. I noticed it since he was a baby. His rages only happened at home and got scary violent as he grew into a teen. He used to have fits at the grocery store as a toddler- he couldn't stand sitting in that cart!, so i just stopped taking him. He acted perfectly in most public places, and his intelligent, polite adult-like talk made others think he was the ideal child. We also hospitalized him last yr, age 14, and finally got him on a mood stabilizer to control the anger outbursts. He has been diagnosed with many things, from oppostional defiance to one Dr recommending i pursue a full ADHD evaluation. But i had already researched ADHD when Gabe was 2, and although Aspie's have similar symptoms, it's really from different brain neurology causing the autistic spectrum symptoms. When he was 14 and emotionally shut down, he was diagnosed with depression. Zoloft caused him to react more violently out-of-control than anytime in his life, which is an indication of bi-polar. So he then got the diagnosis of Mood Disorder NOS, since he didn't quite meet the criteria of Bi-polar. His current Psychiatrist says the AS is the foundational problem that results in the mood swing eruptions. But we still are trying to get help for him, more than the med to stabilize moods. He struggles with all the social problems and since he's so well behaved at school, no one sees any problem. They think it's just a personality thing- "Oh, he's quiet, just not social... lots of people are like that." We get all that minimizing, trying to "help" us. I don't want help pretending he is not struggling secretly inside and so drained and anxious trying to function and fit it. So, i too agree with you that i sure hope there's some more help out there soon. I know there are brain imaging scans that can validate the problem, even though i read in autistic books to the contrary. Many people are ignorant, not only about these diagnostic tools, but the many treatment options that have really helped ASD people actually IMPROVE and lead a much more peaceful and productive life. I know about this from reading, but WHERE in OHIO can i get this help?

  I don't believe in meds either. I have 2 children with asperger also. They are still young, but I think they are doing very well with out meds. They are in school and are learning . We have taught them calming skills, and they work most of the time. I was told that meds usually  dont work on asperger children.  good luck. 

 When I read this, it was like you were living in my house and talking about my son. He is the same way . Keep you head up, you are not alone.

We just found out that my 11 year old son has Tourettes, OCD and ADD. I knew that he symptoms since he's been about 4 years old, but I couldn't get a doctor to diagnose until now. As overwelming as it is me and my son are dealing with his condtion everyday, but the rest of the family is in denial. They think it is like a cold and it will just go away. It makes it hard for us because we don't know how to explain how serious these disorders can be. My son comes home from school and he is extremely stressed because the teachers are always yelling at him, and the kids are beating him up. It just breaks my heart that I can't be there to protected him. I've gone to the school and tried to get an IEP set up, I've talk with the school staff about my sons condition but things don't seem to change. It's like I am fighting a loseing battle. The doctors put him on meds, but I don't see much of a change if anything I think his disorders have gotten worse. As a mother I do everything that I can to support my son, but sometimes I get so overwelmed and frustrated because I don't know what to do to make a normal life for my child. If someone can give me some ideas or advise I would really appreciate it. Thanks  

I wrote this letter before I seen your show, but I'm still seeking any information I can to help my son get through this tough time. My son can handle the Tourettes for the most parts, he is just having a real hard time dealing with the negitive and crule society.I have been looking for a  support group in my area, No luck yet, but I'll continue to search everyday. Thank you!