Finally posting about Adam.. Sorry its so long. :(

[GinaMarie]

wellllllllllllll.. I guess I can try to post about Adam.. Its been so frustrating and confusing and well... who knows.. I'll try to post what I know and all. I take lots of meds and some for seizures that dont help my memory problems and also have comprehension problems also so I might come back and add more.. BUT if any of you have some advice it would be greatly appreciated or questions for me I'll try to answer them.. I've been trying to get help for him and FINALLY he is in counseling and they are finally starting testing for Aspergers, HFA, bipolar and other behavioral problems....

We do know Adam probably has multiple diagnosis because we KNOW he has my rare disease (Gorlin Syndrome also known as Basal Cell Carcinoma Nevus Syndrome),ADHD, and we are also starting to test him for behavorial problems (or AS, HFA, Bipolar or anything else)....

Adam as an infant (as reading thru his records from regional records and baby calendar) seemed a happy baby tho had lots of ear infections and sickness. He was developmental delayed (because of the Gorlin Syndrome). He didnt talk sentences I think til after 2-3 yrs old which complicates the AS diagnosis. As an infant he did lots of stimming.. He would lay on the floor and stare at the ceiling and flap his hands with his feet in the air.. um I dont remember much else of his infancy or toddler...

At 6 yrs old I asked the regional center to have him tested for Aspergers/Autism. They sent him to one of thier specialists. According to HIM.. He said Adam wasn't... He said he had eye contact and was to social. YET I had told him Adam LOVED to draw and was good. He had Adam draw and Adam drew a picture of Adam in a boat and the psych in the ocean and Adam said the psych was being eaten by sharks and was DYING and then they were on the ground and Adam was dancing around him saying YOUR DEAD YOUR DEAD YOUR DEAD and laughing. The psych did say Adam did have some neurological disorders and "stereotypical movement disorder" (the stimming) and said it probably would get worse but wasnt AS...

So the regional center wouldnt take Adam back on..

Adam's stimming has changed from hand flapping to clapping and teeth chomping... His anger and tantrums have gotten worse.

He never seems to show his behavoir at school.. Everyone thinks he is sooo sweet and quiet. When things upset him.. He waits til he gets home and then takes it out on me or his brothers. He has always been in special ed (resource). He had Physical therapy and Occupational therapy and Speech til the past couple yrs. He was diagnosed with Expressive/receptive language disorder when he was younger..

Last yr the school FINALLY saw what I was talking about (after me telling them for like 2 yrs he has problems).. The teacher (who happened to be my 7th grade teacher when I went there) gave an assignment that said, "write about a time you felt like punching someone in the nose". WELL... Adam wrote about how he is going to kill his boy for taking his girlfriend and how he is going to do it.. . THAT got the schools attention!!!! THO I saw it FIRST and called his teacher before school started and warned her.. Adam DOESNT know I know about it. HE WOULDNT tell me about it. He said it was a secret.

The school put him in counseling. The counselor that sees him now agrees he has problems. She also says he has problems with communication and that he cant say what he wants and that leads to him getting angry. SHE DOES see some Aspergers in him.

Here is some of what is going on with him..

1. He AVOIDS eye contact when he can.
2. He DOESNT like to talk unless its stuff he LIKES to talk about.
3. He is an EXCELLENT artist!!
THO he ONLY likes to draw swords, Star Wars, VIOLENT like things like fightings. He was in an art class about 3 yrs ago and the art teacher said he was VERY advanced and was amazed he knew perception and things advanced for his age.
4. He STIMS (hand claps, "chomps" his teeth) when excited
5. He has sensory issues like feel of clothes, sounds, touch of things.
6.Tho he has NO smell (because of Gorlin Syndrome) He cant smell at all.
7. He is extremely tall and I THOUGHT pre-puberty but they say no. He has BO since like 4th grade and hairy legs.
8. He is facinated/obcessed with Star Wars type stuff.
9. He doesn't like being touched.
10. His best friends are like 7-8 yrs old.. He DOES NOT interact with his classmates (6th grade). He is 11 and does NOT interact with kids his age. At school he stays to himself or if he can he plays around the kindergarten or lower grades.
11. He can play with lego's for a LONG time.
12. OHHHHHHHHHHHHH his MOOD SWINGS!!! uggggggggggg He can be fine one minute then in a rage.. Then can be crying... or can be laughing (but not funny laugh).. We never know what will set him off. He DOESNT like change either.. If I say we are going to do something and something happens and it gets changed... He gets so upset. THO if in front of strangers... SOMETIMES he can mellow it and then let loose like in the car or at home.. BUT if his little brother is near... he better watch out. He has started hitting me back when I discipline him.

I think if you made it this long... Im shocked.. To tell you the truth.. As I've studied AS and HFA... I would NOT be surprised as I have told his counselor if I had it also.. I've been so frustrated with my comprehension problems and not understanding things (papers and books) and things people say to me. I also have had periods of clapping (Stimming) at times (tho mostly when by myself) and have TAUGHT myself and WORKED ON trying to keep eye contact Because thats what people have SAID is proper.. I prefer to stay home alone than go out in public.

Anyway.. Sorry to make this long.. I didn't really know how to word this and is one reason I havent posted it yet. IF you have read this and have any advice I would appreciate it.
Thanks so much..
Gina Marie

[JungleWoman]

GinaMarie,

Dont apologize for being long! We want to know whats going on with you and your family!!

My son is quite a bit younger than yours so I dont know much about what to do in that area, but Im sure others here can pick up the slack on that one.

What really stood out to me was:

I think if you made it this long... Im shocked.. To tell you the truth.. As I've studied AS and HFA... I would NOT be surprised as I have told his counselor if I had it also.. I've been so frustrated with my comprehension problems and not understanding things (papers and books) and things people say to me. I also have had periods of clapping (Stimming) at times (tho mostly when by myself) and have TAUGHT myself and WORKED ON trying to keep eye contact Because thats what people have SAID is proper.. I prefer to stay home alone than go out in public.

You just described ME! I am totally able to control the stimming around people-- (this is also something I dont often share and I dont think my husband even knows it)

I definately regressed in the eye contact area when I stopped working-- because when I started again, I noticed I would avoid people. I had to force myself to fit into the customer service mold, because it was required of me. (Although I have never really been very introverted, it was still noticeable for me that I wasnt looking people in the eyes like I had years before.)

Comprehension is VERY difficult for me. Show me in pictures or act it out for me and I'll get it. Explain it to me or read it to me and you might as well be talking to a brick wall. Its like I can see that there is a mental block, but I cant get around it in any way-- and the connection I should be making seems so close, yet so far away. Its very hard to explain that. Maybe you can relate, I dont know.

Often, I have to read things four or five times. Im also a Christian and reading the Bible is often hard because of the amount of interpretation involved sometimes.

I zone out a LOT. Especially when people are talking to me.

Somehow *by God's grace ;)* I am able to get by.

I want myself tested to see where I am on the spectrum.

But I totally am right here with you on a lot of what your concerns about yourself are!! Dont feel alone, ok?

[GinaMarie]

Oh my kids get soooooooooooo mad at me when they ask me something (across the room) about thier homework and I tell them I can't help them UNLESS I SEE IT.. THO sometimes THAT doesnt help.. BUT IS easier.. I CANT understand things if told.. makes it even worse with my memory problems..

Even when someone is telling me like a phone number and Im writing it down.. I have to write AND SAY it and STILL sometimes DONT write it right..

I've been seperated from my husband for 4 yrs but havent legalized it because I DONT understand the paperwork and CANT get anyone to help me (without charging me)..

I've gotten soooooooo frustrated lately probably more so because of all the increase of meds and seizure meds making it worse... but I CANT think of words I want to say.. I want to say something and the words I want to say are GONE from my brain.

OR... People say something to me and I cant tell if they are saying it to be mean or not.. I also say things and dont know if it was proper or not.. Friends will tell me, Gina you shouldn't say things like that or dont say things like that.. OR IF I said it to them... They might be quiet and I will think... usually later when its to late.. Did I do something wrong? or say something wrong?

Oh I've ALWAYS had a hard time reading the bible.. "EMBARRASINGLY" it took me like 20 yrs before I understood what the 23rd Psalm meant by The Lord is my Shepard I shall not want... I used to be so confused and think... WHY wouldnt I want the Lord... I LOVE Him so much... I FINALLY a few yrs ago found out it mean I shall not have needs.. That he will always provide..:rolleyes: BOY did I feel dumb..

Oh the other things I could keep going on... And it hasnt been til I've had kids and seen them and watched them grow up and had them tested and learned to see what I could possibly have..

IS Aspergers inherited?
GM

[JungleWoman]

GM, I totally hear ya!! (and dont feel stupid because you arent!)

I think ASD is hereditary, IMO-- Im sure there are those out there that don't agree.

There isnt anyone at all that you know that can go over the paperwork for you? Or is it very legalized and difficult in general?

A<><

[jkidd]

I don't normally hang out in this forum but I wanted to add some info.

AS is usually thought of as resulting from a right-brain dysfunction. The right half of the brain is responsible for pictures, math, pictoral reasoning, social skills. If you have no problems understanding pictures it is NOT likely to be AS.

However... the left half of the brain (more specifically the left temporal lobe that folds into the fissure dividing the temporal lobe from the frontal lobe) deals with words and language. There is no "name" for dysfunctional language processing (expressive, receptive)... Landau Kleffner Syndrome (LKS) is the closest in terms of symptoms, but you have to have a very active EEG to be diagnosed with LKS... but it is often associated with high levels of frustration because of the inability to communicate.

So AS is prolly not the best dx. LKS may be closer.

[JungleWoman]

Have you ever read a book by Temple Grandin (a well known autistic) called "thinking in pictures?"

I dont buy the right brain dysfunction theory at all.

There are a whole HOST of things that can cause autism. Sometimes its neurological, sometimes its any number of other things.

[mryan]

Just wanted to add that my daughter is Landau kleffner and her seizure activity focus is on the right side of the brain. Just clarifying. She has more problems with seeing things upside down and backwards but was diagnosed when she lost her speech. Every kid diagnosed autistic or PDD should have an allnight EEG. I wish we would have done it sooner. My daughter regained her speech, miraculously, after 3 months of prednisone therapy. It has been 18 months and she is still hanging tough. - Martha

[Isabelle]

GinaMarie, I wish I could help you somehow.

But what I have observed is that many cases like yours are helped by a tutor, mentors or support (human support) and believe me, psychiatric diagnoses and meds complicate conditions like yours and of your son.

It is an outrage that institutions, governments,etc. they rather waste money (taxpayers money at that) on psychiatric assessments and meds than spending money on people willing to work with people like you.

Good people makes a difference in the quality of life of adults like you and adults like you can still learn providing the proper teaching tools like visual clues, etc.