arm flapping | Autism PDD

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Sherry, I'd be interested in knowing what specialized training his teacher has in deciding he should or should not use PECS!? Is she an ST as well as a Special ed teacher? Does he have an ST? (He should)  PECS is VERY common is ASD kids verbal or not. I think Jean has a great link there! PECS can be used in so many ways.... in books to help the child flip through and communicate their wants and needs, it helps reduce frustration, and can be used to give them a schedule to follow which provides predictability and routine and helps them transition.

Regarding the state help available each state has their own resources. I'm not sure exactly what you are looking for. Budget cuts are being made EVERYWHERE.... SOME kids qualify for SSI, some a form or medical waiver. SOME (MR/DD) schools have a program where if your child meats eligability they qualify for up to a certain amount of funds per year to help pay for therapy, sensory items, respite, etc. Some states have respite care services.... ALL states are different. 

Here is some info for state specific resources to try to help get you started......

FIND YOUR LOCAL Autism Society of America Chapter here http://209.200.89.252/search_site/index.cfm

Yellow Pages for Kids with Disabilities
http://www.yellowpagesforkids.com/

 
National Association of Protection and Advocacy Systems, Inc http://www.napas.org/other%20pages/origins%20home.htm
 
Special Education Rights for Parents and Children
http://www.cesa7.k12.wi.us/sped/Parents/Special%20Education% 20Rights%20for%20Parents%20and%20Children.htm    
 
State by State Special Education Web Pages 
 
Parents Directory
 
Support and Advocacy
http://www.patientcenters.com/autism/news/support_advocacy.h tml
 
Autism Resources
http://www.autism-pdd.net/autism-resources.html
 
National Respite Locator Service
http://www.respitelocator.org/searchStates.asp
 
National Respite Network
http://www.respitelocator.org/index.htm
 
About Head Start
http://www.chtop.org/hsindex.htm
 
National Service Locator
http://www.respitelocator.org/locatorsearch/searchpage.htm
 
Special Needs Advocate and Attorney Directory
http://www.education-a-must.com/aalist.html
 
Special Education Resources Directory
http://www.education-a-must.com/ser.html
 
Missouri Autism Project Registry
http://www.genetics.missouri.edu/mapoverview.htm
 
http://www.unlockingautism.org/    
National Call Center 866-366-3361
Internet Resources
for Families of Children with Disabilities
http://www.supportforfamilies.org/internetguide/specdisab.ht ml
 
Autism Resources - Specific Issues
http://www.autism-resources.com/links-specific.html
 
National Dissemination Center for Children with Disabilities
http://www.nichcy.org/resources/intro.asp
 
Recommended Resources
http://thechp.syr.edu/recommended_links.html
 
Autism Spectrum Disorder Resources
http://www.behavior-consultant.com/autism.htm
 
Autism Resource Links
http://www.djfiddlefoundation.org/autism_resource.htm

http://edlaw.net/frames.html
 
State Specific  State Resources http://www.nichcy.org/states.htm
 

http://autism.allinfoabout.com/articles/familyresources.htm

Resources for Families

  • First, talk with your child's doctor or teacher if you have questions or concerns about how your child is developing.

  • There are many federal and federally funded resources for learning more about ASD. The "Where can I go to learn more about ASDs?" part on the Information Center's "About Autism" page has links to ASD information from the National Information Center for Children and Youth with Disabilities, the National Library of Medicine, the National Institutes of Health, and more. [Go to the "Where can I go to learn more about ASDs?" information]

  • The National Information Center on Children and Youth with Disabilities (NICHCY) has put together resource sheets that list key programs in each state for children with developmental problems and their families. The lists include state agencies serving children and youth with disabilities, state chapters of disability organizations and parent groups, and parent training and information projects. [View the NICHCY Resource Sheet for your state]

    You can also call NICHCY at 800-695-0285 to talk with a staff person about your questions or concerns or email them at nichcy@aed.org.

  • Every state provides education services for children who have developmental problems. These programs can start right after a baby is born and last until a young adult turns 22 years old. You can find out more about these programs from the following resources:

  • Financial help may be available for health care.

    • Children's Health Insurance Program
      Each state has a Children's Health Insurance Program that provides free or low-cost health insurance for eligible children. The Insure Kids Now! Web site has basic facts about these programs. It also has links to every state's insurance program for children, where you can learn who is eligible for the program, how to apply, and what services are covered. Information is available in English and Spanish.

    • Medicaid
      People of all ages who have disabilities may be eligible for health care coverage through Medicaid. Each state runs its own Medicaid program. The Centers for Medicare & Medicaid Services Web site has general information about Medicaid, including who is eligible and what services are provided. It also has the Web address for each state's program. [Go to the Centers for Medicare & Medicaid Web site] [Find the Web site for your state's Medicaid program]

  • People who have an ASD may be helped by using assistive technology (AT). AT is any item that helps people do things in their daily lives. Examples of AT devices include a keyguard that helps children find the right keys on a computer keyboard, a simpler remote control for a TV or stereo, an adapted mouse that makes computer navigation easier, switches that help children play with toys, and talking books.

  • Possible new treatments for people with ASD are studied through clinical trials. ClinicalTrials.gov is a Web site run by the National Library of Medicine that has information on studies funded by the National Institutes of Health, other federal agencies, and companies that make drugs. You can find out what studies are being done with people who have an ASD, including who is doing the study, what the purpose of the study is, who can be in the study, where the study is being done, and how to get more information about the study. [View list of ASD-related studies at ClinicalTrials.gov]



Adapted from information provided by the Centers for Disease Control and Prevention



Federation for Children with Special Needs
"A coalition of parent groups representing children with
a variety of disabilities. The federation operates and
coordinates information, advocacy, and training."
1-612-827-2966

Help for Children From Infancy to Adulthood, 6th Edition
"A national directory of more than 1,000 resources to
help children, including sections on children’s health,
mental health, and mental retardation, and children
with disabilities."
1-800-343-0686

National Parent to Parent Support & Information Systems, Inc.

"Supports, strengths, and empowers families through
one-to-one parent contacts."
1-800-651-1151

Pen-Pals Program

"Pen pals are designed for children 5 to 18 with a
chronic illness"
1-201-361-7366

 

Also I suggest calling your local Autism Society of America chapter to ask about resources available and check out Unlocking Autism's Parent 2 Parent Network   to connect (hopefully) with a parent in your area who can help you find resources near you.

 

Oh yeah Arm Flapping!

Tyler flaps when he is very excited, stressed, frustrated...  What I did was everything he flapped I would say to him " hands down " and gently try to restrict the hand flapping at his sides down to his lap area.....  you have to be EXTREMELY CONSISTENT and everyone involved with him needs to do the same exact thing consistently....  If its over excitement teach him something more approriate like clapping his hands 3 times and saying YEA! But whatever you decided do it CONSISTENTLY this was NOT an easy thing to redirect for us... and Tyler still hand flaps next to his head (ears) when hes stressed or nervous... he also taps his hands (almost like passing an object back and forth between the hands) when he speaks and he will pace back and forth.  I figure its probably something he will always have... I just need to find a less noticable way for him thats more socially acceptable.

Michellle, thanks for the information and websites will check them out. i think his teacher has a background in speech.  someone from st has seen dakota at school i havent heard anything back from her. i will try all of the advice. thanks a million for your help. sherry Luke will arm flap when excited, too.  He used to hand flap mostly, but now it's his arms (which actually looks a little more 'normal' -- kind of like he's cheering).  Anyway, we've been trying to redirect this to either clapping (which IS appropriate when one is excited) or kind of clapping his hands on his thighs (which is something the OT suggested, since many NT preschoolers do that, too).  As Michelle said, you (and everyone with your son) have to be extremely consistent with this.  I agree with Mark-Dad, too, that one shouldn't try to take away all their stimming -- just to redirect them into more socially appropriate outlets.  For crying out loud, I still twirl my hair at 37 yrs old!!  

I am thinking that maybe when ds gets older and his communication is better I will try the redirecting. (like mssteeler's "hands down") At this time ds is not at the point where he seems to understand what I'm saying. If I were to tell him to stop flapping his arms or hands, he just looks at me like he has no clue what I'm talking about. I don't know if he really doesn't understand me or just doesn't realize he's even doing it? He'll just keep flapping looking at me like I'm speaking jibberish. Other times he just ignores me and continues, that's his pervasive ignoring kicking in lol. My mom tells me many kids flap and I shouldn't even look at that as a "sign" of asd. I personally have never seen dd or other children flap. Or maybe some do here and there but not all the time? I guess I'm just not familiar enough still with what is nt or asd at times. And mard_dad I agree w/ your post.

Amber

DovesNest38595.8063657407 My instinct has been to try to stop our son's flapping, toe walking, etc.

However, it's interesting to read the comments of older people on the spectrum who stim. For example, in this thread at wrongplanet.net:

http://www.wrongplanet.net/modules.php?name=Forums&fil e=viewtopic&t=2829

Most of them wish they hadn't had people demanding that they "bottle up" the feelings that provoke stimming behaviors. It's a tremendous stress relief for people on the spectrum, one dictated at a very low level by their brain! I would not want to stop my son's stims if it meant him bottling up anger to the point of outburst, or developing a poor sense of self.

That said, most of the people in that thread also note that they eventually figured out that their stimming brought unwanted attention to themselves, and so they eventaully either developed less noticeable stims or did stimming in private. I'm now thinking that we will try to redirect our boy towards "less noticeable" stims and/or private stimming (i.e. only asking that he keep it down when we're in public, which he already kind of does). I don't want him to bottle up feelings he can neither deny nor verbalize!
mark_dad38595.4528472222does anyone have any suggestions on how to redirect my son when he starts arm flapping, he does this when he is very excited, his teacher mentioned maybe rewarding him for a different behavior but im not sure how to get him to respind differentely. also since having the dx of autism spectrum disorder is there any assistance i can get for myson from the state? his teacher at school does not want to use pecs says it is a crutch and that she thinks he has the potentital to talk any suggestions? sherry mom to dakota 3 mild cp, autism spectrum disorder, christa 22, elijah 16.

i would disagree with the teacher regarding pecs they may be a crutch but they are a very useful one and may help aid his speech development if he is excited and flapping having the pecs may enable him to show you what is exciting him and i don't think that using pecs ill slow down his speech any so the only thing to be gained from using them is a improvement in his communication skills.Just my opinion based on the fact that we resisted using and had a frustrated little boy because of it even though he is now verbal to some degree we still use them at school and home because jack finds it easier to respond to a visual clue than a verbal one

As for redirecting the flapping have you thought about giving him a stress ball to squeeze in his hands he is still getting movement but in a less obvious way and you could slowly downsize the ball till it fits in his pocket so he can play without anyone knowing we are working on this with our oldest son at the moment he has a what he calls his bag of worms which is like a ball of jelly strings hard to describe but effective

hope things work out for you

Dee

thanks alot for sharing your thoughts Dee. i will continue using pecs and will try the idea of the stress ball. sherry

i hope it helps you and your little one let us know how it works out

hugs

Dee

First, I must say that I am not a teacher or expert in ASD. That being said, I have been told that a picture communication system and / or basic signing, is a MUST for many ASD children. The schedule (with pictures) help our children UNDERSTAND what is going on, how it will proceed and what the child is to do during the process. The link below may be of great benefit to you and your child's teacher. This is JMHO, but to say that a non spoken communication system is a crutch is like saying that someone with a broken leg is using the crutch as ...well, as a crutch. To think that this child is to either talk, using complete sentences and mastery of spoken communication, or is to have no other way to communicate is (to me) unacceptable.

If you cannot work this out, I suggest you look into a formal request to the school that your child receive a formal speech, communication and language evaluation and while you are at it, add that you want a formal evaluation for assistive devices and technology. That is just my opinion. But the link below will give you some insight into the stance of people who ARE experts on ASD. Children who cannot converse (not just say words, but express their feelings and understand what is being said to them), should not be left hanging while they await mastery of expressive and receptive communication.

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=302&a=5319& amp;view=print

Communication and interaction

Communication happens when one person sends a message to another person either verbally or non-verbally.  Interaction happens when two people, for example, an adult and a child, respond to one another - a two-way communication.  

Most children with an ASD (autistic spectrum disorder) will have difficulty interacting with others. This is because in order to be successful at interaction the child needs to respond to others when they are approached by them or be able to initiate interactions. Although many children with an ASD are able to do this when they want something, they tend not to use interaction to show people things or to be sociable.

It is important to remember that communication and interaction do not have to involve the use of language and speech. Many children with an ASD are delayed in their use of language and shy away from using speech.   Therefore, other methods of communication need to be established before speech and language will follow.  

Understanding the communication of a child with an ASD

Often parents and carers of children with an ASD feel that they are unable to communicate and interact with their child and are unsure of how to do so. The child may appear not to hear what is said to them, fail to respond to their name and/or be indifferent to any attempts of communication that are made. The use of everyday opportunities and play can encourage communication and interaction in a child with ASD.

The way in which the child communicates needs to be observed in order to develop their communicative strengths and needs. For example, if the child is not using any sound or speech, rather then communicating with them through words, try using gesture. The child with an ASD may use some of the following to communicate with others: crying, taking the adults hand to the object they desire, looking at the object they desire, reaching, using pictures and echolalia

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I also want to comment on the Teacher saying your DS has the 'potential' to talk. It is my undersanding that ALL asd children have the potential to talk, even to master conversation. Some may never reach that potential, but it is there, that is why early treatment is so important (JMHO). Your childs hand / arm flapping may well be a way he is expressing his anxirty and / or frustration at not being able to communicate ( there we go with that 'crutch' again, in any meaningful way, to get across his feelings, concerns and anxietys, wants and needs, etc.)

Hope things go better for him! Please keep us informed

Jean thanks for the information and article with website will read and print out. i have someone that is an assistive tech that is seeing him once a week, not sure what his thoughts are yet on daktota will lcheck with special ed coorodinator have her follow up on things. thanks sherry

http://www.incrediblehorizons.com/floortimeautism.htm

 

This site is a help to me, to try to understand the things that are happening as my child tries to learn how he can communicate. I keep remembering our first OT telling me that my son has to order himself, learn how to control his issues BEFORE he can converse and interact with words.


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