NVLD/CAPD right to life /persuit of happiness

[majano]

What is the name of your state? PA

Since my initial topic got locked; I'm responding and adding a bit more.

Actually rmet, we ARE dealing with non verbal learning disorder; it's very big, very serious and all those in charge of him simply dismissed the Dr.s findings and let him suffer. And suffer it is: depression was serious then, still untreated. This is a kid begging for help, he went to the neuropsych (for all the testing) in order to begin the process (big step for a teenager.) That was Aug. 2004. AGAINST Dr. warning, he was put into High School anyway, waaaaaaaaaaaaaaaaay unprepared. And, (for the purposes of being on-line) may have finally self medicated. THEN they know what to do. Lock you up, put you in a behavior program etc. THEN THEY ALL HAVE POWER.
Now he has LOT of powerful adults in semi-charge of him; none of which have a clue of LD's, "never heard of his Dr." (only because they have their eyes and minds closed.) She is very good. They think I drove him to Allentown to find a Dr. to say what we wanted her to say. I kept everyone, who held any responsibility toward him, informed so they would be neglecting him with their eyes wide open. None can claim ignorance of the situation. I overinformed them, as you all have seen me do. So you see how crippled up the kid is**************..family is saying "GET A JOB" all are down on him because they have no understanding of LD's. He's at his wits end. You see why it's so important the schools take responsibility? THEY KNOW******************************************.... and lives are ruined forever...whatever way you turn. THERE IS NO HAPPY ENDING IF LEFT UNTREATED.
We're basically asking for life itself. I have done a lot of research and know good Dr.s for CAPD testing etc. said I would pay GS WANTS to go. probation says if I keep insisting we can start over with a Dr. they use**************...(not right kind.) I said "no". It doesn't seem legal. This kid should have rights. If he can't take it anymore and does something to cope....THEY CAN SWARM IN AND DO ALL KINDS OF THINGS. In the end, we have a young man who has serious LD's untreated.

 

[rmet4nzkx]

I'm sorry I missed your new thread. We had a problem with a member and I was being targeted because I wasn't slamming anyone and several members have issues with me that have nothing to do with you. That doesn't make any sense to you, I'm sure, but they decided to disrupt any thread that involved the word, Asperger's, that is why your thread was eventually locked, to prevent them from further disrupting it.

Now you are going to have to pay close attention. First of all you will need to use paragraphs when you post here so other members can follow what you say. Otherwise they won't take you seriously and some who may have useful advice will ignore your post. It's not fair but it is how the system, works.

You and your grandson are going to have to start using the term, Asperger's (Syndrome). That is the term assigned to this syndrom in the DSM-IV in 1994 before that it was called many things including NVLD. You may want to read a book by Byron P. Rourke, Syndrome of Nonverbal Learning Disabilities: Neurodevelopmental Manifestations, edited by Byron P. Rourke (Guilford Press, 1995). Byron Rourke has published extensively on NVLD and what has come to be called, Asperger's. Asperger's is not the same thing as Autism or mental retardation but is what is called an Autism Apectrum Disorder, which opens a whole world of resources for developmental disabilities to individuals with Asperger's which as a part of the syndrome includes learning disabilities.

That is the term the system is able to use to help your grandson. CAPD is one aspect of Asperger's Syndrome or disorder. Focusing on aspects of Asperger's such as CAPD rather than the whole syndrome is causing more confusion and also causing his parents and the schools to focus on his oppositional and inappropriate behaviors rather than the chronic neuro deficit that causes them or the more effective want to treat or develope an education plan.

The reason this happens is that your grandson is intelligent and should be able to complete the tasks of schooling but is unable to without ADA accommodations for education offered through Special Ed. Unfortunately, there is a stigma associated with this and many families become what are called closed systems because they cannot deal with this any better than he. If probation is offering a doctor, do not turn that down, when he goes to see the new doctor, that is when he needs to ask about, Asperger's. The doctor will take than into account. If he is on probaiton, please ask for a GAL to be assigned, all counties in PA have this service available. It is also very inportant to addres his depression as there is a higher rate of suicide or accidents among youth with Asperger's and it may be without warning.

Please contact other support groups in PA and nationally found on the web under the terms Asperger's. They can be of great assistance to you and your GS. Here are a few to get you started:

Asperger Syndrome: Local Support Groups: Pennsylvania
Asperger Advocates is a support group for families of children with Asperger's Syndrome. This group serves the York County area of Pennsylvania. ...
http://www.udel.edu/bkirby/asperger/suppPA.html

Pennsylvania Aspergers Syndrome Camps, Aspergers Syndrome Camps at KidsCamps.com - Internet's most comprehensive directory of summer camps, winter camps, ...
http://www.kidscamps.com/camps/pennsylvania-aspergers-syndrome-camps.html

eMedicine - Pervasive Developmental Disorder: Asperger Syndrome ...
http://www.emedicine.com/ped/topic147.htm

http://www.aspergers.com/asplist.htm

Understanding Asperger's Syndrome - Pennsylvania - GreatSchools.net.
http://www.greatschools.net/cgi-bin/showarticle/pa/385

Also the link I gave, http://www.faaas.org and http://www.autism.org/contents.html

You may also want to read this book, TheSource for Nonverbal Learning Disorders, by Sue Thompson (Lingui Systems, 1997).

and

Inside Out: What Makes a Person with Social Cognitive Deficits Tick? by Michelle Garcia Winner (Jessica Kingsley Publishers, 2002). Contains many wonderful strategies, with a focus on communication skills.

Social/Support Group forming for Adults with Asperger’s Syndrome

http://www.aspergerfriends.com is forming a group for Adults, ages 18 and up who have Asperger’s Syndrome. Other young people with high-functioning autism, or PDD may also be comfortable in our group. You may want to contact them for some help with your grandson's problems, please contact Matt at [email protected], or Greg at [email protected]

More apportunities for Asperger teens

Information on Camp Ramapo

Camp Ramapo is in its 83rd year and serves youth with a wide variety of special needs and at-risk youth and families. We currently have openings. In addition to its nationally recognized summer program, Ramapo offers retreats for student, staff, and family groups throughout the school year that are designed to strenghthen connection and communication within the group. If there are questions please feel free to call me or visit our website, www.ramapoforchildren.org.

Jerel L. Walden Director of Outreach Ramapo Training 133 East 58th St., Suite 411 New York, NY 10022 212.754.7003 212.754.4994 Fax

SUMMER CAMP OPENINGS

Camp Ramapo serves children with: • Autism and similar Pervasive Developmental Delays • Learning Disabilities • Emotional and Behavioral Problems • Attention Deficit Disorder

This summer camp is ideal for youth who benefit from increased structure and supervision. The program is focused on the development of positive social and self-help skills, forming productive relationships, and having fun in a safe and well cared for environment. There is a 1:1 camper to counselor ratio within three summer programs, each designed for a different age group: Early Adventures (4 to 6 years old), Summer Adventure (6 to 13 years old), and a Teen Leadership Program (14 years old and above). We enroll campers on a rolling basis and currently have openings. Fees are set on a sliding scale. Information and applications are available at our website (www.ramapoforchildren.org), or by calling 845-876-8403. Mike Kunin, Camp Director

Links from
http://www.aspergerfriends.com

1. Asperger Teens

2.Summer Camps

3.Asperger Syndrome Experiences from a Teenage Perspective

4.Focus Adolescent Services

5. COLLEGE PLANNING FOR THE HIGH FUNCTIONING STUDENT WITH AUTISM

6. Preparing for College: Tips for Students with HFA / Asperger's Syndrome

7.Tips for Dealing with a New Asperger Syndrome or PDD-NOS Diagnosis

8.Asperger Syndrome and Adolescence: Middle School Anyone? (view in PDF File.) View in HTML

9.Talisman Summer Programs (Summer Camp)

asperger,asperger teen,asperger teens

Book for teen on Asperger's Syndrome

1.Asperger Syndrome and Adolescence: Helping Preteens and Teens Get Ready for the Real World by Teresa Bolick, Teresa, Ph.D. Bolick

2.The OASIS Guide to Asperger Syndrome: Advice, Support, Insight, and Inspiration by Patricia Romanowski Bashe, Barbara L. Kirby, Tony Attwood (Foreword)

Other Web Sites
http://www.ssepac.org/links/aspergers.htm

http://www.aspergerfriends.com/otheraspergerlinks.html

Asperger Syndrome Coalition of the U.S.
http://www.asc-us.org

Online Asperger Syndrome Information and Support
http://www.aspergerssyndrome.org

http://www.iol.ie/~wise/autinet/anflinks.htm

http://users.wpi.edu/~trek/aspergers.html

http://www.ddat.com.au/content/links.html

http://www.udel.edu/bkirby/asperger/aslink.html

http://www.autism-resources.com/

http://aspergers-forum.org/links.php

http://www.mentalhealth.com/dis/p20-ch07.html


* LD Online http://www.ldonline.org

* Nonverbal Learning Disorders http://www.nlda.org

* NLDline http://www.nldline.com

* http://www.socialthinking.com

* NLD on the Web http://www.nldontheweb.org

* SERI (Special Education Resources on the Internet) http://www.seriweb.com

 

[mommyto 2]

rmet4nzkx~
I am glad you responded to this poster in such a through manner. I read the previous posts and I know what other members where writting. What they do not seem to realize is that you have extensive experience on Asperger's. I too, read the original post and all I could think of was Asperger's. I am a speech pathologists who works with children with ASD and also have extensive training in the field along with having a son with severe Asperger's. You were right on with your concerns and gave excellent advice to the OP. I hope they take it for the sake of their Grandson.

 

[rmet4nzkx]

rmet4nzkx~
I am glad you responded to this poster in such a through manner. I read the previous posts and I know what other members where writting. What they do not seem to realize is that you have extensive experience on Asperger's. I too, read the original post and all I could think of was Asperger's. I am a speech pathologists who works with children with ASD and also have extensive training in the field along with having a son with severe Asperger's. You were right on with your concerns and gave excellent advice to the OP. I hope they take it for the sake of their Grandson.

Thank you for your considerate response. You know very well the range of frustrations that accompany this disorder. Actually there are a number of current members here with children with ASD/PDD/AS and some that have come & gone when their immediate crisis was over. It is especially frustrating when posters with various intents see the word Asperger's and make inappropriate comments. When in doubt, it is always better to at least evaluate for it even if it is ruled out, it may uncover more effective ways to work with these individuals who's families almost always need outside interventions and support. There could almost be an entire section of the forum devoted the the legal needs of special needs and disabled persons.

 

[Just Blue]

rmet4nzkx~
I am glad you responded to this poster in such a through manner. I read the previous posts and I know what other members where writting. What they do not seem to realize is that you have extensive experience on Asperger's. I too, read the original post and all I could think of was Asperger's. I am a speech pathologists who works with children with ASD and also have extensive training in the field along with having a son with severe Asperger's. You were right on with your concerns and gave excellent advice to the OP. I hope they take it for the sake of their Grandson.

I agree with you 100% !! I have a child with PDD and have sought rmets advice with great success!! We have some idiots on the site who have a personal agenda...Unfortunately they don't care what they do as long as they get a dig in at rmet....

 

[mommyto 2]

to rmet and baystate ~ I agree with both of you! Having gone through a divorce and having two children we know that many issues both legal and emotional arise but when a child with a disability is involved there are a whole lot of other issues that are involved, both from a legal educational point and a custody point. To say the least it can become very complicated and frustrating.

 

[rmet4nzkx]

to rmet and baystate ~ I agree with both of you! Having gone through a divorce and having two children we know that many issues both legal and emotional arise but when a child with a disability is involved there are a whole lot of other issues that are involved, both from a legal educational point and a custody point. To say the least it can become very complicated and frustrating.

If you turn on your PM feature you can PM other members offline and with some confidentiality about your mutual concerns, start yuor own FA support group for children with disabilities.

 

[mommyto 2]

Not to sound like a complete idiot, I am not sure how to do that!!!

 

[rmet4nzkx]

Not to sound like a complete idiot, I am not sure how to do that!!!

Goto Quick links on the control panel above, click on that, then click on edit profile and down to PM click to enable then you can send and receive PM from other members, the top right of the frame will show when you have received a PM.

 

[mommyto 2]

Thanks - I think I got it! It has been a rough day, my daughter has head lice and I am in the process of sterlizing my house!!! Just what I wanted to do today!

 

[rmet4nzkx]

Thanks - I think I got it! It has been a rough day, my daughter has head lice and I am in the process of sterlizing my house!!! Just what I wanted to do today!

Yes you have activated it. Have fun.