Looking for answers; New to board

[Bev1]

Hi,
We have a 20 year old son who was diagnosed with a severe to profound bi-lateral hearing loss after 8 years of my saying he couldn't hear.  Since he was past those first crucial years for language and social development, most of his social, language, communication, and comprehension problems have been attributed to hearing loss.  The school psychometrist who finally agreed with us that he could not hear, initially thought he could have autism, but the fact that he is an affectionate person made her ignore that route.  Now that he has gone through high school, we are seeing problems that we do not think are related to his hearing loss, but are wondering if he has some form of Aspergers.

We admit we do not know much about autism or Aspergers,  but when we found an article that listed many characteristics of the disorder, we were astounded at how many our son has.  He has difficulty with eye contact when talking with you; he cannot follow a conversation, commonly interrupting and talking about a subject in which he is interested-sometimes seemingly obsessed with; he is musically gifted--we know people like to say that, but my husband has a Masters degree in music and has taught for 28 years; he is repetitive in that he says something, then will repeat it one or two times; he has very few friends, and the ones he does have do not want to do anything with him outside of school; needs lists and routines; difficulty expressing his emotions; takes things literally.  There are several others, but I'm afraid I'm going on too long. 

Our son is academically capable, but unfortunately during his last three years of high school, we put him in inclusion and pull-out classes.  We moved here from another state and did not fully understand that in those classes, he would not receive the full curriculum that he would have received had he been in regular classes with his IEP.  Since his curriculum was watered down, he has not passed the science and history portion of the graduation exit exam, so we have re-enrolled him in school and he is now taking both of those subjects in regular classrooms. 

We live in the Atlanta, Georgia area and were referred to the Marcus Institute by our doctor.  Unfortunately, they do not accept our insurance, so we are looking for a good, reputable psychologist who works with young adults and who would probably know how to handle the hearing loss issue.  I have no clue as to where to go to find that.

I am wondering if anyone can answer this question:  Do children-young adults with Aspergers have difficulty in distinguishing reality from fantasy?  This is one thing that has become a huge problem for our son/us and I don't know if that is part of this syndrome or if it could be something else.

As you can probably tell, we feel we are at our "rope's end" in finding answers.  Any help you can offer will be so greatly appreciated that I can't even describe it. 

Thank you; sorry for the length of this intro!

Bev1

[Jen]

Greetings,
First of all- we're glad you are here- please forgive my delay in replying as we have been dealing with some family issues (spending evenings in ICU w/ my grandmother)  so havent been too active here, but i digress...
I know some folks who are members of our forum who can probably help w/ 'where to go' questions. I also wanted to say, yes, there are difficulties distinguishing between fantasy and reality- I'll try and find you more on that as well.
For now, welcome- we hope you will find support and information here.

[Bev1]

Thanks, Jen for the warm greeting!  I am sorry about your grandmother; I hope she improves soon.

I sat here and almost cried from relief to read your answer to my question concerning discerning reality from fantasy.  We've been struggling to try to understand why he can't figure that out and it helps to know that this is indeed another symptom. 

A friend asked me the other day if the reason I am searching so diligently to find out and to put a name on what exactly is wrong with my son, is just to know what it is or to get help for him.  I told her it was both.  I was really stunned that she should even ask, but she has never had a child with whom she had to search and fight to find what is causing problems in almost every aspect of his life.  I desperately need to put a name to what it is...that might be wrong of me and I'm sorry if it is, but we had to fight to even get anyone to listen to us concerning his hearing loss.   I feel that if we know what is going on, then maybe we can help him to cope and work around whatever it is. 

Again, thank you!
Beverly

[PattiS]

Hi Bev! I'm Patti and I"m new to all this also. Our son is five and was diagnosed in December with very mild aspergers syndrome and ADHD he is the joy in our lives. You asked about being unable to tell between fantasy and reality our son does that also. He also doesn't catch the cues of when someone is teasing him and if they really mean it. I'll give you a good example: In kindergraten about a month ago he slapped another child in the face because he told me he wouldn't be quiet. Well turns out that other child (who is a big bully) told our son he was going to suck all the blood out of him and it would be gone!! Well of course he would smack across the face, he thought he was going to do something to him. He recieved a yellow behavior card for the day which I didn't contest but I made sure the next day the teacher knew what prompted that response. She has seperated them totally now.
 We also because he hyperfocases on tv we've had to limit his time watching and we need to be extrememly careful what he watches. He's very impressionable.  He watched a rather violent cartoon spiderman my nephew who is a year younger brought over and watching his face I knew it bothered him yet he couldn't tear himself away from it. Guess what happened, he had nightmares from two days that Venom was going to get him. He's not on the extreme case thank goodness but knowing that it does happen from time to time gives a warning so we know to be careful with certain things.   It was a relief when we finally got the diagnosis for him, now that we have a name for it we can help him now so he can function to the best to his abiltiy I know that is what you want for your son also. I don't have a name or can help you in that department but I have found some websites that I love that I'll share. Take care

http://www.do2learn.com/
www.aspergerresources.com/asperger_child_in_the_classroom
http://www.asperger.net

[Cindy]

Hi Bev .  I have a 13 y/o with AS.  You absolutely are doing the right thing by continuing to question the unsatisfactory responses you've gotten.  You are doing your job as a parent in working to help your son reach his full potential and have an independent and satisfying life.  I remember when we figured out it was Aspergers- people are surprised to hear that it was actually kind of a relief and empowering.  I could better understand why he did/thought/felt things and how to address them.
Maybe the fantasy world becomes so real for our kids because it is easier for them to understand.  They get the whole picture in that 2 dimensional world- the entire story is right there in a linear fashion.  None of the extra noise of other people and nonverbal stuff.  Sorry, I don't know how to put it into words.
I don't know of any specific resources in Atlanta, but maybe one of these can help out.


GEORGIA PROTECTION AND ADVOCACY AGENCY
Georgia Advocacy Office, Inc
One Decatur Town Center
150 E. Ponce de Leon Avenue, Suite 430
Decatur, GA 30030


Phone: (404) 885-1234
TDD: (404) 885-1234
Toll Free: (800) 537-2329 (nationwide)
FAX: (404) 378-0031
E-Mail: info@thegao.org
Web Site: http:www.thegao.org

Executive Director:
Ruby Moore
E-Mail: rmoore@thegao.org


Georgia
Parent to Parent of Georgia, Inc.
3805 Presidential Parkway, Ste 207
Atlanta, GA 30340
770-451-5484
Fax: 770-458-4091
stephanie@parenttoparentofga.org
http://www.parenttoparentofga.org
Serves: Statewide

   
 
Autism Society of America, Greater Georgia Chapter

 
 
P.O. Box 3707 
Suwanee 
GA 
USA 
30024-0994 

  (770) 904-4474 
  (770) 904-4476 
 
http://www.asaga.com/web/index.php?option=com_frontpage&Itemid=1


OASIS (online asperger syndrome information & support)
http://www.udel.edu/bkirby/asperger/
(be sure to check out the clinicians page)

Hang in there and keep in touch.
Cindy
 

[Bev1]

Thank you, so much, PattiS and Cindy not only for the encouragement, but for the websites.  I've bookmarked them and am looking forward to going through and seeing what they have to offer.

I'll keep you up on our progress!

Again, thanks!
Beverly

[Jen]

Glad some folks have been able to be helpful- I  appreciate so much the people who are members here. One thing i wanted to reply to was your comment about wanting a 'name' for what was going on- I remember that well. I just wanted to know what we were dealing with so i could start doing something to help my child- it is such a helpless feeling otherwise. 
Anyway, that's my two cents for today. Hope to see you back here soon- ALL of you!