Topic : 01/17 Extreme Disorders

I have 2 kids with AS my son 13 and daughter 11. 

I go the alternate route. 

We have used in the past Brain Gym (magic stuff) a wonderful naturopath, Irlen lenses, gross motor skills development and training in ways that work for their brains. 

To get info into their minds I use video/DVD or books as issues come up.  I try to anticipate but more often it is in response to problems. 

The hardest thing for me is that we can be cruising and things going well and then one of them willcome home from school and everything goes to hell in a hand cart and I have to go to school to fight for the rights of my children. 

I find it totally amazing that the parents of these special kids have to fight so hard for the rights of our kids. And then when we try to make life easier for everyone concerned by sharing the knowledge we have found over the years many teachers treat us like we are ignorant people who have caused the problem by our poor parenting skills. 

Teachers are the biggest challenge or support for our kids and yet they often dont even try to understand.  We have had angels for teachers that have blessed our lives with their presence and we have had teachers that are a curse to our kids. Good with the bad. I hope that shows like this will teach people that AS is not someone actively choosing to be naughty but instead just someone who thinks a bit differently and who needs support. 

In September of 2003, my then 5 year old son was finally given the designation of having Aspergers Syndrom as well as his previously diagnosis of  ADHD and other Sensory issues. What a relief. I finally had something concrete to sink my teeth into. No more of this Global Developmental Delays, or PDDNOS (Prevasive Developmental Delays Not Otherwise Specified) for a point on the Autistic spectrum could not be pinpointed for him until he had a psychometric testing done at the end of grade one. At which point he would have had maturized enough to follow the testing with a specialist.  

With the diagnosis, I dove into every book I could get on the subject and I made sure that I looked at every angle incliding talking to people who had this diagnosis. I looked at Tony Atwoods books and other doctors who are prolific in the understanding of this technical aspects of this neurological disorder. Every thing was saying the same things and I wasn't getting any closer to understanding what he was feeling or going throught. It wasn't until I got my hands on the soft cover books writen by Dr. Temple Grandin and did I get an "A Ha" moment.  

Temple is a woman who grew up Autistic and since become a successful and well spoken Dr. of animal husbandry, Dr. of psychology and a designer of Cattle channels for slaughter houses. 

This last part may sound brutal, but to a person who does not read emotion like we do, this was totally fine for her. I personally can not imagine designing this type of equipment. 

One of Temple's books is called " Seeing in Pictures" at least I believe that is what it is called. It  is an autobiographical story of her life, how she was as an autistic child and how she related to People, her environment, change, and the benifits she had by having a very regimented life and having the great luck to have two very aware parents who did not give up on her when so many parents back then did give up on their children. Her biography allowed me to see what she saw and feel how she felt and in turn I was able to relate better to my son. I was able to see that my son was very much like Temple in a lot of ways and different in others. This photographic memory that she speaks of. That is my son to a tee. Don't ask Peter what is going on at the moment he is too busy processing it all. So his short term memory is very short. Yet ask him what I was wearing last Tuesday and he will be able to tell me. It has everything to do with seeing things as pictures or slides. He has a processing delay and it is only through her explenation as to how she recognizes things that I was able to put two and two together for Peter. It is like when you first have a child and everyone wants to see the child. If the look on your face is happy and the tone of your voice is warm and endearing, then the child will forever respond to you in a happy coing manner. But if upon first glance at that child your face is harsh, unhappy and your tone of voice is off, then that child will forever remember you like that as well and will usually cry or react negatively. This is the way Peter's mind works. He will remember you from the first time he ever visually met you. He will search back into his vault of knowledge and pictoral reference points to finds a related topic, bring it to the front of his mind and them begin to form and anwer to a question. This is most apparent when he is sitting amoungs his sister and her friends trying to have a meaningful converstion. She will be talking about one thing or another and as quick as that will change topics, onto another story. At this point Peter is wanting to interact except his topic is now old and he seems out of place. Poor Peter. But we have come to accept this of Peter and had I not read her books I would have continued to see this as Peter a little backwards. I love our son and even though he has his challanges ahead of him and I have a rather long road to hoe, I feel I have been given at least a small path from which I will not stray. I hope your search for answers for your son does the same for you too. 

Temple Grandin's books have taught me a lot about my son. I think this is one place that you should look if you wish to see things through the eyes of your child. It made me cry and it made me rejoice for I felt I could now connect on a different level with my son. 

I hope this helps. 

Best wishes. 

Peter's Mom. 

Hopeful...I'm hopeful my son has an extreme disorder?  Sounds terrible but it would explain so much.  He's 19, extremely bright scholastically and totally out of it socially.  He's always been bullied, overly sensitive, generally annoying and he's gotten worse lately.  He has no idea what appropriate is.  Over Christmas vacation, we were shopping together and he was like a pinball, had to keep crashing off of me or his grand dad or he was totally oblivious to personal space...leaning on us like he had no energy to keep himself up or just plain in your space.  We were walking through the supermarket and he was "meowing".  He makes totally out of the blue comments that have you looking at him like he's not quite right.  "I like pie, do you like pie, I really like pie".  He's in university now, on the other side of the country, and he's struggling.  He's generally an outcast, has a few friends and is generally unhappy.  I describe him as an angry, unhappy young man.  He's actually in military college, the Canadian equivalent of West Point and I think the structure has helped him until he comes home for a break and then it's like he's just out of control.  I have been worried about him for a long time and have felt that something was wrong brain wise.  People around me tend to judge him and think he's just an obnoxious young person or a pain in the a__.  I think I'm the only one that recognises that there really could be a problem beyond obnoxious.  If he doesn't make it through college and has to come home, I will do what I can to get him to see the professionals that can make the diagnosis.  Until then, this mom can't do a lot to help. 

Those of you with children who have had the diagnosis, does any of this sound familiar? 

Paulette, 

Yesterdays show was an eye opener for me.  I'd never heard of AS.  It's my son in so many ways.  I've never had to deal with major rages but there have been so many other things that point to AS.  He played with Pogs back when he was 5 or 6 and did rows and rows of statistics about which slammer knocked over how many Pogs at a time...at 6!  He's always been on the outside looking in socially but off the charts scholastically.  He's inappropriate...makes rude comments much as you described, has no conception of personal space and is downright annoying!  In fact if anything, he's worse now than he was a year ago.  I've always been his greatest defender and fan.  It's only over the Christmas vacation that just passed though that I decided he's disabled but I didn't know with what.  People around me judge him...he's obnoxious they say.  I tell them that he really doesn't get it.  Even so, I'd had enough of him and was glad to have a break when he went to visit other family members.  He's away at college now and there's not a lot I can do to help but if the time comes, I'll see that he gets somewhere for a diagnosis and help. 

So, Paulette, you're not alone, Sister! 

Danielle 

Hello everyone, I have 3 children , 2 of which we believe has asperger. My middle child has always been different. As a baby he didn't like to be held, he didn't like to be sung to. He could only drink soy milk and even now is very picky about what he eats. He was always quiet and well behaved. I didn't realize how different he was until he started school. Then it was horrible. I knew he was ultra senstive to sounds and lights but he was always home with me so i could control his environmentbut at school it total overload for him. We still haven't got a direct diagnoses for him yet but we hope soon. I've been told he was ADHD and bi-polar but i'm not comfortable with that. He also has some ocd's. When you tell him to stop something he has to do it one more time.And if you say "don't touch that" he has too. I'm homeschooling him now, so some things are better but i've notices some mood swings lately . His had meltdowns before but never violent. He usually starts chanting and rocking and you can't reach him for along time. He's extremely intelligent. He loves clocks and watches and anything to do with space. He can talk for hours about things he loves. He doesn't understand slang words and he takes everything literlly. He is always asking "what if ". He tries real hard to make friends but he has trouble i think he tries too hard. We have him in cub scouts and he loves it. Oh and he doesn't like to be touch or be in a room with strangers. 

Now my youngest 4, she is a handful. She would never sleep after she was born and spit up everything she ate. She was 3 before she slept a whole nite through. She is hyper and very smart, she helps her daddy work on his car motor. She is very loud but hates loud noises. She seems angry al the time, you never know whats going to set her off. She has tanturms and hits kicks and bites anybody close. She doesn't like to be told no. Her and Christian both love to build things out of their lego blocks and i mean really neat things. My son also like to work on car motors but doesn't like to get dirty. He also can read anything but can't write it or spell even if i just told him how. and he can't understand more than one instruction at a time. Its very hard most days but they are wonderful children just different than most.  

I think it makes it easier for me to understand them, because i have alot of Asperger tendencies. I was told that I have depression anxiety disorder and been told i was anti social. I'm not I like people its just hard for me . I don't know what to say or how to act. 

I'm glad to have found this board, I've learned alot on here tonite and hopefully I'll find the help i need for my children.   

Hi Karen - 

I haven't seen the show. I read about it on an email list I am on (have a child with AS), and found this messageboard. 

It may be nothing, but I was wondering if your son has been assessed for Bi-Polar Disorder? 

You say Alex becomes obsessed with ideas and goes mad with your bank account. This is really typical of people with Bi-Polar in a "high" episode. 

You say Alex has rages. This fits with the other end of the mood swing with BP. Rage and/or depression. 

You say when Alex is "in control" he is a normal boy. This doesn't really fit with AS. The sensory integration and language disorder and social misunderstanding symptoms of AS don't really go away and the person with the AS is not in control of them, as these come from the difference in the structure of the nervous system (autism/AS is a neurological disorder). How sounds, speech etc are processed by the brain.  

Forgive me if I am way off.  

Lea 

As I was watching your show about extreme disorders, I had to call my daughter to see if she was watching the same show, and she was. My daughter is the ElmiraMom who's quote is above.. She was in a world all by herself trying to find out what was wrong with her son. I totally thought it was to do with discipline and at first blamed her and my son-in-law for being too harsh. I now have been educated in mental health, not only by her but by working in the mental health field, and have been educated on all of the different disorders that are out there. As with any disorder, whether it be physical, mental or emotional you have to learn to live life in a whole new world. We should have more education out there so that others understand it in a more positive way. When they don't see anything wrong on the outside they are the first to point fingers and put the blame, as I did, on the parents. Families have to stick together to work out the wants, needs and emotional support of the individual and their siblings. Sometimes your hopes are crushed when you find out your child has been diagnosed with the wrong disorder and then you have to start all over again with management of your daily activities. Your life will never be the same again, but.... you can and you will survive, this is your child! If your child was in a wheelchair or had some other physical impairment that you could notice right off the bat wouldn't you change your whole life around for that child? Well, this is just another challenge to take on and work it through, there are people out there that are willing to help you, help yourself. Just remember it is not the child's fault or yours, it's just another stepping stone in life. Good luck to you all and may the angels be with you in your journey! 

Elmira Nana