Topic : 01/17 Extreme Disorders

I have a 6 year old son that was diagnosed  at 2 1/12 with PDD-NOS as well as having sensory issues.  It can be very challenging at times and as a single mom can be a bit overwhelming at times.  I was a mom who was very against putting him on meds but when it got to the point of him being kicked out of daycares and other programs and he was physically hurting other children as well as sometimes me I knew it was time to consider it.  Well last August I put him on meds he is on concerta which is a med that is used most often for ADHD and it has been quite amazing.  He is controling that impulsive behavior that was getting him into trouble not that is has stopped it all together but more often than not controls it now.  He is only 6 and he wants to take the meds he tells me he feels better he doesnt get as angry as he did before.  I noticed alot of people said things aobut meds and Dr. Phil making that suggestion well it CAN make a big difference.  It is not a cure all but with the right meds and the help of the school and making sure your child gets all the help you can get (and beleive me it is limited what i can do since I am a single low income mom) your child can lead pretty much a normal life.  Our children with disorders on the Autism Spectrum are God's gifts and very special; children.......they are also in good company as it has been said that Albert Einstien was beleived to have a form of autism, as well as Bill Gates, and even the Actress Daryll Hanna has PDD-NOS.  These are just a few examples I am sure if i did more research I'd find many more.  I beleive these children with a high funtioning form of autism will do well as long as we as parents do all we can to help them along the way to lean to live a normal life. 

  

Carol...mom of 4- one with ADD and dyslexia, one with ADHD, and one with PDD-NOS (one is just a typical crabby teen lol) 

I have an 11 yeard old son who who has an "Autism " label within our school system. He was given one diagnosis as "Expressive/Receptive Language Disorder". It does fall under the ever widening "Autism" window.  

  

He does not understand much of what we ask him and can communicate back less. The "speech teacher"  at his school had never even heard of this disorder. I had been told is was a rare form of "Autism". So I stay frustrated becasue I feel I have let him down by not being able to get him the help he needs to break through this bubble he is in.  

  

We had been getting him additional help and therapy when he was 4-5 years old... but our insurance pulled it from us because it was "NOT MEDICALLY NECESSARY" Even  a letter from his Doctor would not make the Insurance company change his mind. I really do not think they ever "REVIEWED his file and all the support I gave them for why they should continue to pay for his therapy. 

  

He repeats tv shows, computer games, movies, makes lots of noises. The more stressed he is the more he does these things. We have tried "medications" to help calm him but he began to get violent on them and I was afraid for his little sister. I tried to get him into  a Psychiatrist that his Doctor referred him to... the best one in Roanoke Virginia.. but he was 9 and was too old to be accepted as a "NEW" patient. I would have to go 2 hours away.. and then maybe they would be able to get him accepted my this local Dr. 

  

We have limited funds to help him. The school system is useless. I am a stay at home mom mainly because of Joshua. My husband is self employed... and the health insurance we carry( same one we had that denied help for Joshua) charges us $ 700.00 a month and will not pay for any diagnoses, or help for my son. 

  

Now that his hormones are changing... he has mood swings , sometimes he gets very very happy.. other times he gets stressed, angry or even violent. 

  

All these things with Joshua bring back very painful memories of my child hood. My brother had severe Autism.. he had no speech and was not even diagnosed till he was 13-15 years old. My mother cared for him till the day she died.. he died 3 months later.  I watched my mothers sacrifice and sometimes I even get angry because I see myself facing the same things.  Unless I can get Joshua help( and at his age it is getting too late) I will have to care for him as long as I live as well. 

  

All I ever wanted was a "Normal " family life....    

My 8yr old son has PDDNOS-Pervasive Developmental Disorder Not Otherwise Specified which is an ASD. At least that's what we've been in therapy for for the last 5 years. We just had a third evaluation on him for school as they didn't like all of the supporting documentation that was provided to them by his many doctors and therapists and I didn't feel that their observation of him was thorough enough to discredit all of that same documentation. The dr who did the last eval said that since he scored SO very high on all of the IQ tests and he did well with the testing that she couldn't support the PDDNOS diagnosis. Oh, my son has a secondary dx of Impulse Control Disorder so it can get pretty interesting around our house. I wish I could have the brain scan that was mentioned on the show today done on my son so all of those nonbelieving doctors and so on could actually see what biochemical changes go on inside the brains of those who live with this disorder.

A great web site for Asperger's is the O.A.S.I.S (Online Asperger Syndrome information and Support).  It has information that may be helpful to you, your family and teacher's.  http:.udel.edu/bkirby/asperger/aswhatisit.html .   

My son is 16 and was diagnosed with Tourette's Syndrome, ADHD and OCD at the age of 7.  It has been a real struggle for him and our whole family.  He has been on many different medications, some work for awhile and others not at all.  I think the hardest part has been his struggle with school.  It is very hard for the teachers and students to believe in these disorders.  Right now they have just written him off as a "bad kid".  They are transferring him to an alternatvie school because they don't know how to deal with him anymore.  I am torn on this because this alternative school has a bad rep and most people in this small town think that the kids that go there are worthless and just troublemakers.  However, if it takes some of the stress off my son so he can finish high school and graduate, maybe it will be ok.   As a parent it is so hard to watch your child go through every day with so much stress put upon them.  I wish that it would be mandatory for schools to get training in these areas to help deal with kids like my son. 

In regards to your post: ABA agencies run on the spectrum, much like ASD.  Unfortunately, parents who have done ABA and don't agree with it have a skewed view.  A well run ABA program runs on the priciples of positive reinforcement and having fun.  I will and can never teach a child who is sad and frustrated and upset.  What is so wonderful about ABA is that it breaks things down.  For example, the "art" of conversation has many many sub-components: eye contact, non verbal gestures, prgamatics, staying on topic, segwaying, answering questions, switching topics, making statements, small talk, etc...  ABA can break down all those sub components so that children with autism are successful.. i would never just throw a child into a peer group situation and expect them to read emotional cues, answer questions, look at the person who is talking etc...before they get there we work systematically to strenghten those weak skills and make them successful so that these children have confidence in themselves when they are confronted with peer situations. 

For the younger ones, it may seem redundent when we ask them to do things over and over again, but it all has a purpose.  If you think of really small infants: they absolutely love repetition.  Teletubbies repeats their little segways (when the camera shoots into the tummy).  So really good therapists can make something like reduncy seem super duper fun by powerfully reinforcing the act, not keeping the child in the chair for long and having lots of fun!  

I am truly amazed at all the wonderful, varied children i have worked with over the past 6 years.   It is a blessing to see these children learn how much fun it is to be around people, to enjoy sharing toys with other kids or talking about Bionicles to other children, to go to b-day parties and engage in all the activies (we even teach kids all that is envolved in going to a b-day--balloons, cake, opening presents, waiting etc...IF they need it of course.).  

Elna 

ABA Lead therapist 

I am a 35 year ols woman who was diagnoses with Tourette's at the age of 7. I did make an observation and it seems like majority of those with TS are males. I was on medication for several years and when I was old enough to make my own decisions, I quit taking the meds because of the horrible side effects. I never had a brain scan or anything like that, but I am curious to know what type of treatments are out there besides drugs. The doctor I used to see when I was growing up was a psychopharmacologist who specializes in drugs and their effects. I would like to find a new doctor but am not sure who to see. My tics are a little less severe as I've gotten older but they still flare up at times. I am a college srudent and have struggled for years because I have such a hard time being in class and focusing my attention. I have two children and my oldest is 15 who has ADD but no signs of any tics. Mine started after my grandfather passed away. I have a family friend who's tics started after his parents divorced. Is there any correlation? 

  

I just watched the Dr.Phil show. I was thinking lately about writing and asking if they could do a show on this subject because it really isn't out there enough. I still meet a lot of people who have never heard of it. I have a speech class I'm taking and I think I'm going to do one of my presentations on TS. I would like to see more shows on treatments because it seems like so many people have tried meds and they didn't work, although the show was great and informative for those who don't know enough about it. I also thought it was interesting to learn about asperger's. The special ed teachers and psychologist at my son's school thought he had it at one time, but he saw a doctor and he didn't see any symptoms. Up until then, I had never heard of it. So the show today raised a lot of awareness for me. 

My husband is 23 and has Asperger's.  He was diagnosed when he was around five or six, and from what I know he was quite a nasty kid - mean, temper tantrums, you name it.   

He is a wonderful man, highly intelligent, highly creative, and will hopefully go far in the gaming industry.  I met him when he was a freshman in college, and took every effort to learn about Asperger's so that I would not be surprised by any of his behavior.  He did have some issues with rage (never towards me) when he was frustrated with schoolwork - usually a wall and his head were involved, and later campus safety and the local hospital because they feared he would hurt himself.  When I learned of these episodes I was concerned/worried, but I stuck with him and even moved from my home state to be with him here at college.  He is now a senior and will be graduating this year.  He's grown so much in the past few years that I've been here - he no longer allows his schoolwork to frustrate him the way it used to - he's either slightly upset or shrugs it off entirely (it's no longer the end of the world), he makes steady eye contact now, he's trying to be aware of his own gestures and body language, he's letting other people talk when he's in a conversation, and he's not having as many problems in a group setting.  I'm so proud of him and what he's accomplished - not only in his personal life, but academic and professional as well.  He used to use Asperger's as an excuse as to why he shouldn't try to do something, and now neither one of us thinks about him as even having it.  We're just a regular newlywed couple dealing with the same issues every couple faces.   

I am a 16 with Aspbergers I I often take fits of anger but more often I experience depression, so serious it scares people around me. People in my school talk about me being different and it hurts me a lot. I wish they'd stop

thank you so much for getting this out about toerrites my husband has been living with this forever he has been humiltaed had people run from him and ben laugh at.  but he has mangaed to hold down a good job serve his country and be an awesome dad. 

people hopefully will listen to you about this disorder and educate themselves better. 

again thank you