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Family Services Office Hours – 09.21.11

September 22, 2011 1 comment

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled. 

3:03
Hi Everyone! Welcome to this week’s Family Services Office Hours! We are here to answer any questions you have about our resources and help connect you with others. So ask away!
3:04
Comment From sheila 

is there in sevices in lawrenceburg tn

3:05
Hi Sheila! Here is a link to our Tennessee Resource type! You can check for resources in your area!http://www.autismspeaks.org/community/fsdb/state.php?sid=50
3:05
Comment From Robbin 

I would like to know if there are any extracurricular activities in my area for my 16 year old son with Aspergers?

3:05
Hi Robbin! You can find lots of resources in our Resource Guide. All you need to do is click on your state, select categories like “Recreation and Community Activities” and type in your zip code.
3:06
I also suggest you order our Transition Tool Kit, it was designed specifically to help families of individuals with autism ages 14-22 on the transition to adulthood. It has lots of tips, including more about how ti get involved in the community.
3:06
Comment From Maggie 

Hi Autism Speaks. Thank you for giving us this opportunity to ask questions. I think my three-year-old son has autism. A friend of mine’s son was just diagnosed and I see a lot of his traits in my son. What should my first step be?

3:06
You can order a free copy on our website!
3:07
Hi Maggie! Thank you so much for joining us! There is a page on our website, ‘Learn the Signs.’http://www.autismspeaks.org/what-autism/learn-signsYou should also work closely with your pediatrician to be sure your son is reaching developmental milestones and to track his progress.
3:07
Also, check out our Video Glossaryhttp://www.autismspeaks.org/what-autism/learn-signs
3:09
We would also like to recommend a wonderful book, ‘ Autism Solutions’ by Dr. Ricki Robinson. Dr. Robinson will be here for a LIVE Chat on Monday, September 26th so check back for more!http://drrickirobinson.com/
3:10
Comment From Britt 

Hi Autism Speaks. My son was diagnosed with autism at 3. He is now 4. Lately a lot of people have been asking us what degree he is…and I have no idea. When he was diagnosed no oe mentioned a degree or anything like that that. Is this important to know? Does it make a difference? How would I go about finding this out? Thanks so much.

3:10
Hi Britt. Your pediatrician can help provide you with more information. However, regardless of the formal diagnosis, every child with autism is different so it is more important to focus on your child’s strengths and weaknesses and make decisions about his treatments based on what you see. You know him the best!
3:13
Comment From Connor

My wife and I are having difficulty potty training our daughter who has autism. Do you have any tips for us?

3:15
Hi Connor! Thank you so much for joining our chat. This is often difficult for families! Here are two books that we recommend!
3:15
Teach Toileting: A Revolutionary Approach for Children with Autism Spectrum Disorders and Other Special Needs
by Deborah Bialer http://www.amazon.com/teach-toileting-revolutionary-approach-disorders/dp/0615255523
3:15
Toilet Training for Individuals with Autism or Other Developmental Issues, 2nd Edition
by Maria Wheelerhttp://www.amazon.com/gp/product/1932565493/ref=as_li_ss_tl?ie=UTF8&tag=autispea-20&linkCode=as2&camp=217145&creative=399369&creativeASIN=1932565493
3:15
We haven’t read them ourselves but they have been submitted to our Resource Library by other families that have found them helpful, so I hope they are helpful to you too!
3:20
Comment From Britt

Thank you. Also, How would I go about finding activities for my son do? The state law here has changed for his IEP and it now says that he should have more social interaction…but we are having a hard time finding classes and activities for him that accept and understand kids with special needs. And lastly, do you know of or have any resource information for military families? My husband is AF and its likely that we will be moving again within the next two years. So I would like to get a resourceful connection if I can before then. Thanks you again.

3:21
Hi Britt, please visit our Resource Guide. You can search by state to find activities for your son.http://www.autismspeaks.org/community/fsdb/search.phpYou can also visit our Community Connections, ‘Have Some Fun Today! Recreation, Community Activities, Clubs and More!’http://www.autismspeaks.org/family-services/community-connections/have-some-fun-today-recreation-community-activities-clubs-and-
3:23
The Organization for Autism Research has sponsored a program called, ‘Operation Autism.’ It is a resource guide specifically for military families.http://www.operationautismonline.org/tag/military/
3:25
ACT Today! is a national non-profit organization is a mission to raise awareness and provide treatment services to families that cannot afford the treatments and services their children require.http://www.acttodayformilitaryfamilies.org/
3:25
Comment From Britt

Awesome! Thank you so much!

3:25
Comment From John

My daughter is having a hard time transitioning back to school. She is new in her mainstream class. How can I help her peers understand what autism is and why she has challenges. Thanks so much for taking the time here!

3:26
Hi John! We are sorry to hear that your daughter is having difficulties. We recently created a Community Connections, ‘Back to School: Let’s Get Ready for a Great Year’ that provides tips about how to ease this transition.http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:27
You can also look at our School Community Tool Kit in the section ‘Peers’ for more informationhttp://www.autismspeaks.org/docs/family_services_docs/sk/Peers.pdf
3:27
Comment From Sally

How do I talk with soemone in person.

3:28
Hi Sally! We have an Autism Response Team, and our trained coordinators would be happy to speak to you. You can email them directly at familyservices@autismspeaks.org or call them at 888-AUTISM2. They are available during regular business hours.
3:37
Comment From Liz

I have a 9 year old son with Autism/Aspergers. I have not been able to find a way to explain his autism to him. I need help finding a way to talk to him in a way he will understand. Is there an easy way?

3:38
Hi Liz, this is a struggle for many families. Please visit our Resource Library where we have a list of Asperger Syndrome websites http://www.autismspeaks.org/family-services/resource-library/asperger-syndrome
3:38
We also have an ‘Asperger Syndrome and High Functioning Autism Tool Kit’ Tool Kit that can be downloaded for FREE here!http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:40
Comment From allison

i have a son 24 years old that was diagnosed as high functional with a photographic memory but i feel like he should be re-evaluated

3:41
Hi Allison. Re-evaluation is always a good idea if you feel like his diagnosis may have changed. You are the one who knows your child best, so it may be a good idea to trust your instincts and bring your son back to his doctor.
3:44
Comment From Colleen

What is this CARA thing I keep hearing about? Thanks for your help!

3:44
Comment From Louisa mciver

regarding the legislation that was re-approved yesterday….mandating coverage of autism therapies.

3:45
CARA, which stands for Combating Autism Reauthorization Act, was passed the the House yesterday(YIPEEEE), but we still have to wait for it to make it through Senate. For more information, you can visit this blog post by Judith Ursitt, the Director of State Government Affairs at Autism Speakshttp://blog.autismspeaks.org/2011/09/21/tell-congress-to-pass-the-combating-autism-reauthorization-act/
3:46
We have just a 9 days left to pass the Combating Autism Reauthorization Act (CARA) of 2011 before critical provisions expire on September 30th. On September 20th, the Combating Autism Reauthorization Act passed with a floor vote in the House of Representatives. Now, we need you to switch your focus again back ot the Senate. Contact your Senators to ask themto support this important piece of legislation!
3:46
Comment From Louisa mciver

The info I read says that state operated insurance has to cover autism therapies, etc. Does this also apply to group insurance through an employer?

3:46
You can click on your state to learn what is happening there!http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909861/k.B9DF/State_Initiatives.htm
3:56
Thank you for joining us today! Our next live chat is Monday at 3PM. Dr. Ricki Robinson is going to discuss ASD and its impact on family members. She will have lots of great things to say so don’t forget to tune in!
3:57
As part of the live chat, we will be giving away ten of Dr. Robinson’s new book called Autism Solutions. So join us!
3:58
As always, if you have any other questions, please don’t hesitate to contact our Autism Response Team at familyservices@autismspeaks.org or 888-AUTISM2. Enjoy the rest of your day!

A Vision for New Jersey’s Autism Community

August 25, 2011 2 comments

This post is by Peter Bell is executive vice president for programs and services at Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his wife, Liz, reside in Pennington, New Jersey with their three children. Their eldest son, Tyler, has autism.

As the summer winds down, it is a good time to reflect on the Garden State’s accomplishments in addressing the needs of its citizens with autism and outline my back to school wish list. New Jersey has found itself in a leadership position in serving residents affected by autism spectrum disorder (ASD), by establishing some of the best private and public schools serving students with autism. (Autism is a general term used to describe a group of complex developmental brain disorders known as Pervasive Developmental Disorders.)

Current, forward-thinking policies have New Jersey on track to secure our legacy due to several other factors: the passage and enactment of autism insurance reform legislation in 2009 for evidence-based interventions, continuation and support for a Governor’s Council on Autism Research, establishment of an Office of Autism, passage of First Responder’s Training, and an adult service initiative on housing that will be a catalyst for affordable and appropriate housing options for adults with developmental disabilities. In addition to the formal mechanisms that help to improve our human services infrastructure, there has also been a thoughtful and concentrated effort to embrace the autism community’s challenges by Gov. Chris Christie, the First Lady and other administrative officials.

Notwithstanding all of these important efforts, are they enough to really support the impending needs of people with autism as they transition into adulthood? Today, it is estimated that there are approximately 1.5 million Americans with living with ASD throughout the country, with about 80 percent under the age of 21. According to the Centers for Disease Control, New Jersey’s one-in-94 autism prevalence rate is one of the highest in the nation. Using simple math, we have at least 25,000 fellow New Jersey residents, most of them children, living on the autism spectrum.

Creating a New World

Some people have described the wave of children with autism that will need adult services in the coming years as an impending “tsunami” of required services. But using the tsunami metaphor implies a disaster, and I believe we have the opportunity to create a different world — a world in which adults with autism will be fixing our software, making our keys at Home Depot, carefully tending their gardens at their homes, volunteering at local fundraisers and making New Jersey a great place to live as important contributors to our society and taxpayers. Far too many adults with autism and other developmental disabilities are unemployed, sitting at home and isolated from their peers when they age out of their educational entitlement.

So my back to school wish is to review our intent and our mandate to prepare this group of children for the rest of their lives. Congress, through the transition services mandate of IDEA (Individuals with Disabilities Education Act,) wanted students with special education needs to transition smoothly to meaningful adult outcomes. The act defines transition services as “a coordinated set of activities for a child with a disability that is designed to be a results-oriented process… to facilitate the child’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation…”

Certainly, this is a powerful piece of legislation that directly establishes the broader competencies for passage from adolescence to adulthood. But once the educational entitlement of IDEA ends (at the end of the academic year in which the student turns 21 in New Jersey), there is an even greater need for individuals and families to be educated on the supports afforded to adults with developmental disabilities. Most families are disheartened to know that there are no guarantees for adult services. There is a dearth of programs for adults with specific needs and the current system is beyond capacity.

Securing Funding

One of the most significant challenges is funding for services. Funding can directly impact the ability for a provider to expand services to meet the growing demand and can also affect the ability to recruit and retain direct support professionals. The primary long-term funding source for adults with developmental disabilities is Medicaid’s Home and Community Based Waiver Services (HCBS). Currently, these are being revised to provide a more global waiver for all services and that reform is happening in New Jersey. As services become more self-directed, individuals and families must insure that HCBS waivers are written and implemented to serve adults in those services that best meet their particular needs.

Medicaid waiver services are based on eligibility and the availability of resources, and have limitations in service capacity. According to the state Division of Developmental Disabilities, there are approximately 10,081 individuals enrolled in our Medicaid waiver program and the wait list is over 8,000 (including 4,000 in the “urgent” category). It’s not hard to see the unsustainability in a service system that is unprepared for the number of adults aging out of their educational entitlement. Most families will face a crisis before they receive services under HCBS. It makes perfect sense to coordinate a collaborative system of supports that is defined prior to students aging out of their entitlement.

The Transition Tool Kit

Even though we have defined what type of transition services an adult with autism needs (Autism Speaks recently developed a Transition Tool Kit for adolescents with autism), there are limited services that have training and a specific focus on the needs of this growing population. While we are making great strides in understanding the needs of individuals on the spectrum, there is still a great deal we don’t understand about autism. As our leadership debates reforms in our federal programs, we are comforted to know that our New Jersey delegation in Washington understands the challenges and opportunities that befall the autism community, and is taking action. On September 30, the Combating Autism Act of 2006 (CAA), essential legislation that is central to the federal government’s response to the autism health crisis, will sunset. U.S. Senator Robert Menendez (D-NJ) and Congressman Chris Smith (R-NJ) have both introduced legislation that will reauthorize the CAA by extending this legislation at current funding levels. Longtime champions of the autism community, their continued support on legislation so vital to the needs of people on the autism spectrum is gratifying. The research performed under the CAA has advanced, and will continue to advance our understanding of how to help individuals with autism and their families negotiate their lives.

Government can’t do it all. The private and philanthropic sectors have to do their part. Autism Speaks, the nation’s largest autism science and advocacy organization, has invested in autism research in New Jersey through grants to Rutgers, UMDNJ and Princeton University. In addition, the organization has made community service grants to organizations across the Garden State that are directly delivering services in innovative and replicable ways.

We recognize that government cannot solve all the issues alone and we are poised and ready for the challenge ahead of us by highlighting new and innovative employment opportunities, identifying affordable housing that adds value to neighborhoods, and keeping our eye on the prize that all New Jersey residents have the opportunity to work and thrive in our state. Working collaboratively, the public and private sectors can and must rise to the occasion and meet the needs of New Jersey’s current and future adults with autism.

To read full article, please visit NJ Spotlight.

Family Services Offices Hours – 8/10/11

August 10, 2011 Leave a comment

The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting August 3, 2011, from 1:00-2:00 p.m. EDT

Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.

Here is the transcript:

12:54
Welcome to Office Hours offered by the Family Services Department at Autism Speaks. Today’s Office Hours is staffed by Marianne Sullivan, RN, MN, Assistant Director of National Outreach and resources.
12:54
The transition from summer back to school can be tough for everyone, especially for parents of kids with autism? Do you have questions about how to smooth the transition back to school? What can you do to prepare over the next few weeks?
12:58
Comment From Marilyn nunez

What is considered an appropriate education plan for a 6 year old boy diagnosed with pdd nos and adhd combined type? He did veru well in kindergarten almost all E’s on his report card terranova scores

12:59
Hi Marilyn – IDEA provides a free public appropriate education program for children with special needs. Each child is entitled to a program that is tailored to their special needs and a placement that allows them to make reasonable progress with no cost to the family
1:00
A plan for your 6 year-old will depend on what his needs are
1:01
That is wonderful that he received all E’s on his report card! We are glad he is doing well, just keep understanding what his needs are so he can keep making progress
1:01
Comment From Angela Grullon

My son was just diagnosed with autism, he will be attending school for the first time in september. How can i make his transitioning easier since he will be going 5 days a week from 8 to 2. He just turned 3 years old.

1:01
Hi Angela
1:02
This can be a very difficult time of adjustment for your son. It is great that you are trying to make the transition easier for your son. There are a few things you can do to prepare
1:03

The School Community Tool Kit provides information and resources for general education and administrative school staff to support a positive school experience for children with autism.
1:04
Here are some tips for younger students
1:05
There is a wonderful Paula Kluth article that has great suggestions for parents getting ready for school
1:05
Comment From Angela

My daughter is an 8 year old ppd nos with ADD – high functioning autism. She is in a regular 3rd grade class. We had quite a few issues with behavior and working with others last school year. The doctor keeps bringing up the topic of meds, but right now im against that. Do you know of any resources in memphis, tn? I work so hard to find her things she can fit in. Any suggestions on what I can keep doing with the school to make sure my child receives a quality education?

1:06
Hi Angela, how are you?
1:06
If your child was just diagnosed with autism please check out our 100 Day Kit
1:06
Oops sorry! We got ahead of ourselves
1:07
Here is our Resource Guide for Tennesseehttp://www.autismspeaks.org/community/fsdb/state.php?sid=21
1:08
It is very important to work with the IEP Team if it is necessary to understand your child’s behaviors to request a behavioral assessment
1:08
Hi Angela Grullon – here is our 100 Day Kit
1:09
The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.
1:10
Comment From Katie

My 14 year-old sister with Aspergers and ADHD will be starting public high school next week. She has not been in school since December (homeschooled) or public school in 2 years (private, homebound, homeschool). How can we help her make a sucessful transition to a very different environment?

1:10
Hi Katie! It is terrific that you are thinking ahead – preparing for a successful transition will make all the difference
1:11
There are a lot of great articles that can act as a resource for you
1:11
Comment From Angela Grullon

Another question. He has this repetitive behavior where he runs back and forth throughout the day, just running.

1:12
Hi Again! We suggest that you meet with your IEP team and request a behavioral assessment so that the team will have a better understanding of the behaviors and how to intervene. It is all in the consistency of implementing the behavior plan!
1:13
Hi Katie – you can also look to our Transition Tool Kit
1:13
The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.
1:14
You can download this kit as well for FREE!
1:14
Comment From Gabriel

Hello

1:14
Comment From Gabriel

I have a 25 years old brother who is nothing productive.

1:14
Hi Gabriel
1:14
You may also want to check out the Transition Tool Kit
1:15
We are working with on Adult Services because there is such a need. Please also visit Advancing Futures for Adults with Autism (AFAA)
1:16
We are working to bring more focus on this topic as more children with autism are becoming adults. We are looking for a program that focuses on life skills and independent living would be a plus
1:17
Also, check with the Department of Rehabilitation in your community. They should have programs for adults with autism
1:18
Comment From Dena

How can i help my 7 year old son, with his emotions. i know he is going to cry those first few days back to school. He will be in mainstream 1st grade. Even though his has the Autism diagnosis, they say he no longer needs to be in the ASD classroom, nor need a para pro. I’m a little nervous about this.

1:18
Hi Dena
1:18
Even though your son is not in a special needs classroom he has a right to special needs services.
1:19
Under IDEA parents are a vital part of the IEP process and your input should be taken very seriously, even though your child is not in an autism specific classroom. You have the right to request your child has certain services provided
1:20
I suggest you read IDEA and understand your rights and the process that is involved in working with your school district
1:20
You should also visit our page, ‘Your Child’s Rights’ to help with this matter. http://www.autismspeaks.org/what-autism/your-childs-rights
1:20
Comment From Gabriel

The Department of Rehabilation said he is low-level skill

1:21
Gabriel don’t give up hope
1:21
Continue to search your community for the rights that your brother is entitled to. You are doing the right thing and I know your brother will appreciate all of the support
1:22
Having a family member with autism is a lifelong pursuit of finding the best possible fit. Hang in there – you are doing a great job!
1:23
Comment From Guest

how can i make the transition to kinder for my son easy? he use to have an assistant and now he won’t. plus he was not accepted for summer school, so i think it is going to be hard on him to go to school full day.

1:24
If you check our our Community Connections you will be able to find some great articles from professionals on how to make this transition easier. http://www.autismspeaks.org/family-services/community-connections/back-school-its-transition-time
1:24
A suggestion that has worked well for parents, is to meet with the teacher prior to the start of school, to introduce your child. Put together some documents that share your child’s strengths and some successes they have had in the classroom
1:25
It is also helpful to offer some books on autism. Your child’s teacher may not know the latest autism teaching techniques and they may find it helpful
1:26
Paula Kluth’s book, “You’re Going to Love This Kid!: Teaching Children with Autism in the Inclusive Classroom” is a great resource
1:28
Stay positive – back to school can be tough for everyone. But is a great time to be hopeful and optimistic about the year to come!
1:28
Comment From bobbylee

when my son comes home with home work what might take another kid 30mins is taking my son 2 hrs… how can i address this with his teachers with out looking like i want them to take “pity on him”?

1:28
Hi Bobbylee
1:29
The best thing you can do is open lines of communication with your son’s teacher
1:29
Start with a brief meeting discussing the issue of homework. See if there are small adjustments that can be made. Hopefully the teacher will be a good listener and will work with you on addressing the fact that homework is taking longer than it should
1:30
Once the teacher realizes that you are here to help and want to address these issues, many of these problems become easier to solve
1:31
Comment From kendra

I am having a problem with my daughter the teachers talked me into having her go to a different school than the one i had chosen saying it would be a better fit for her. now they are telling me because they have no room they are going to have to send her to this other school (the school i did niot want her to go to at all) because of the comments madre from other people in my asd parent group please help

1:31
Hi Kendra
1:31
As a parent – you are the person that knows your child the best.
1:32
You have every right to bring these issues to the IEP team
1:32
You are a vital part of the IEP process and you cannot be brushed off.
1:33
If you are not happy with the decisions that have been made you may have to consult with an advocate or an attorney. In our Resource Guide we have a directory of advocates and attorneys in your area
1:34
You can also refer to our Special Education and Advocacy Community Connections
1:35
Comment From Dixie

Hi there, is the school tool kit specific to the States, I am writing from Canada and am hoping for something like this for my daughters school

1:35
Hi Dixie – we have an Autism Speaks Canada
1:35
You can contact them here -http://www.autismspeaks.ca/contact-us
1:37
Here is a link to their Family Services Database -http://www.autismspeaks.ca/family-services-database/reset
1:37
Comment From vanessa

is there something that i can do to help my son understand that not all the toys he sees he can have? he is autistic troughs tam trams everywhere.

1:38
Hi Vanessa – you have to figure out what the triggers are for the tantrums
1:38
I suggest your start by using social stories to prepare your child for a visit on a shopping trip
1:38
It is all in the preparation. You can get photos of the store and items that he can have and can’t have so he will better know what to expect
1:40
‘The New Social Story Book’ by Carol Gray would be a great resource for you to use
1:42
Comment From Joyce

We are at the point with are Grandson who is non-verbal, looking into the ipad to communicate with each other. Any recommendations on where and how to get one free or cheap?

1:42
Hi Joyce
1:43
There are sites that do exist that give away these iPads, but as you can imagine, they are in very high demand. iPads are a proven resource as a communication tool for people with autism. You can check here http://itaalk.org/
1:44
Put your name on every list and don’t lose hope. We also produced a ‘Technology and Autism’ that you may find helpful
1:44
Comment From eleanor

i have a 7 yr daughter non verbal and she has had a paro pro for 4 yrs and now they want to change her and give her a aid that knows nothing about autisum very nervice

1:45
Hi Eleanor – we would recommend offering books and resources about autism. Inform the new aid about your child’s unique strengths.
1:46
You have to communicate with your aid and keep them updated and over time you should see progress
1:46
Here are some links from our School Community Toolkit that will be helpful
1:47
With training and support, this aid may turn out to be a great fit with your child. Stay positive!
1:48
Comment From Dixie

My daughter is in senior kindergarten, she is neither high or low functioning, she is just in the middle. She has lost her educational assistant because of this. I am not allowed to send professionals in to consult with the classroom helper for confidentiality reasons. Everything is a hurdle. She is not recogized by her school board as having autism, even though she has a diagnosis. She has no IEP. She is slipping through the cracks and I feel I cannot properly advocate for her. Any suggestions, or more important, what exactly are her rights?

1:48
Hi Dixie – we recommend meeting with an advocate or attorney.
1:49
You can search the Resource Guide by your state to find a legal representative or advocate
1:50
Comment From Marilyn nunez

Any resources out there for advocating on school issues?

1:50
Hi Marilyn, you can just check the links above. Thanks so much for joining!
1:53
When asked, “How can parents work with their teachers?’ One of the best responses I have heard was from Paula Kluth
1:53
She suggests creating a short portfolio, pamphlet, or even a video for the teach. You want to give the teachers some idea on how to work with the new student.
1:54
Again, the idea is to give teachers a well-rounded view of your child.
1:54
You can find more suggestions from Paula atwww.paulakluth.com
1:55
Comment From Michelle

Is it possible to overload our child with services?

1:55
Hi Michelle – the important thing is that you know your child best. You must understand what he or she’s needs are.
1:56
Some kids need less, some need more, but as a parents advocate it is your responsibility to keep what is best for the child in mind.
1:56
Your child is lucky to have you as a parent who can monitor their response to services
1:57
As a parent you have an opportunity to play a vital row in your child’s life.
1:57
We would like to invite you all to subscribe to our ‘Community Connections’ newsletter
1:58
This month we will be focusing on ‘Back to School’
1:58
Community Connections, published monthly by the Autism Speaks Family Services team, aims to increase opportunities and awareness for people with autism and their families in their local communities.Each month’s newsletter explores a relevant topic with practical tips on dealing with everyday situations, links to local resources, and stories from experts and families who share their successful experiences.
1:59
Thank you all so much for coming to Office Hours. Please join us again next Wednesday. Keep us posted on your progress and remember to stay positive as you embark on the new school year!

Autism Speaks Family Services Office Hours 8/3/11

August 4, 2011 5 comments

The Family Services Department at Autism Speaks will now offer online Office Hours each Wednesday, starting August 3, 2011, from 1:00-2:30 p.m. EDT

Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.

Here is the transcript:

12:50
Welcome to Office Hours offered by the Family Services Department at Autism Speaks. 
Today’s office Hours is staffed by Marianne Sullivan, RN, MN, Assistant Director of National Outreach and resources.Hello and Welcome to our new resource Family Services Office Hours
Today, I would be happy to assist you to find autism related information and connect you with Autism Speaks resources found in the Family Services section of our webpage.
12:52
Comment From Dr Lance

Hi – Do you have any resources, esp online resources for parents of Autistic kids who want to home school their child, esp middle school kids

12:53
Hi Dr. Lance! Check our the Resource – you can search by state and zip code in over 50 categories
12:54
Here are some tips on how to use the Guide:
12:54
Click on your state. A list of categories will appear. Choose a category of interest and search results will appear.Results display in alphabetical order. You can refine your search by entering the zip code and radius (miles) of a specific area. This result will include surrounding areas and states.For a mapped result of resources, click on map, in the distance column. Each resource is represented as a map marker, which when clicked displays the address of the resource.***To submit a service to the Autism Speaks Resource Guide, or update an existing entry, click here.
12:55
Comment From Dr Lance

thanks – I tried that

12:55
Were you not able to find what you were looking for?
12:57
Comment From DJ

As the school year nears and I take more notice of how my 8 year old with Autism has regressed a bit and his behavior has altered some, I’m struggling with the delicate balance of what is CODDLING and what is UNDERSTANDING when it comes to his behavior, reactions and his meltdowns. Any tips?

12:57
Hi DJ
12:57
We actually have a Community Connections on the transition back to school here: http://www.autismspeaks.org/family-services/community-connections/back-school-its-transition-time
12:58
You may find this helpful. Our next eNewsletter will be published on August 18th and we will be updating all of this information
1:00
Comment From DJ

Thanks, I’ll check that out! He’s a very sweet and understanding boy, and I think I struggle with his returning to school more than he does, but we had a horrible experience with his 1st grade teacher and it’s made me so gunshy of new teachers and even new students, as she allowed them to make fun of him with no consequence.

1:00
Comment From CIndy Goffus

Hi, My son is 19 autistic and mr, he lives in avella pa, washington co., his exit iep from public school is on aug 30 2011, he doesn’t want to go till 21, he wants to work at gainful employment–he was working at job lifes work while in school–that stopped at end of school yr 2011, he had his meeting monday with Supports cord-for ISP info……can you tell me how to get funding for paid transportation for him to get back and forth to work…..and how to get job search help and job coah to get him acclimated to his work schedule and routine-for him…he wants to work in a local fish market-Wholey’s-in pgh pa. thanks so much….

1:00
Hi Cindy – Autism Speaks has developed a Transition Tool Kit. I recommend that you go online and order a FREE copy of it
1:01
I think you will find this very helpful
1:02
Comment From Guest

I am working on potty training my daughter who is mildly autistic. Do you have any suggestions or tips

1:03
Hi Guest – we have put together a Resource Library and there are new books that are excellent with the topic of potty training
1:04
Comment From BreeAnn Davis

I have a son who is non verbal most of the time, but we keep getting denied by our local state grants to buy him some communication devices. Any ideas on other places we can look? We cannot afford to buy him one on our own.

1:05
Hi BreeAnn – the communication device may be required through the IEP process. Going through your school district is a good place to start
1:06
If it is required for him as a way to access his education, then the school should be responsible
1:06
Check out this Community Connections on how advocacy can make all the difference! http://www.autismspeaks.org/family-services/community-connections/advocacy-can-make-all-difference
1:08
Comment From melissa

can i ask for a para pro for my son in his iep and get one even if the school states theres “no funding”

1:08
Read through this section of ‘Your Child’s Rights’http://www.autismspeaks.org/what-autism/your-childs-rights
1:08
This will help guide you further!
1:09
Comment From Guest

Where can a college bound child on the spectrum get grant / financial assistance for college in Idaho?

1:10
HI Guest – here is the page for your statehttp://www.autismspeaks.org/community/fsdb/state.php?sid=16
1:11
Think College is also a great option to look athttp://www.thinkcollege.net/index.php
1:12
Comment From Ginny

Hi, My son is 5 and was just diagnosed PDD NOS. Where can I have information mailed to me on this autism spectrum disorder?

1:13
Ginny you have come to the right place!
1:13
The 100 Day Kit was created specifically for newly diagnosed families to make the best possible use of the 100 days following your son’s diagnosis
1:14
You can also call the Autism Response Team at at 888-AUTISM 2 (288-4762)
1:14
Comment From Joseph Rose

California has IHSS, a program that essentially pays a parent to stay home to take care of a child with Autism. Is there an equivalent in Pennsylvania? I am home with my son all day, and I am struggling.

1:16
Hey Joseph – have you checked our our Resource Guide for Pennsylvania?
1:16
You may find that our Home & Community-Based Waivers section will be helpful
http://www.autismspeaks.org/community/fsdb/category.php?sid=45&cid=78
1:17
Comment From Joseph Rose

just got it open

1:17
Comment From laura

I have a 2 year old little boy who has shown sighns of autisum since he was born we are fighting with his physitianas well as his neuralogist about having him refered for testing. is there a way to have him tested with out their referal.

1:18
ABSOLUTELY! You do not need an early referral to early intervention services
1:18
What state are you in?
1:19
Search this map and it is right at the top of the page – ‘Early Intervention Services’
1:19
Comment From laura

we live in arkansas

1:19
This page should be especially helpful -http://www.autismspeaks.org/community/fsdb/category.php?sid=5&cid=83
1:20
Comment From Amy

Is there assistance for adults with autism who have reached 18 years of age and are being denied SSI benefits?

1:20
Hi Amy -there is assistance for adults with autism and you will be able to get guidance with the Transition Tool Kit
1:21
Remember you 
1:21
Guest – we have more college information for you!
1:25
Comment From Joseph Rose

I’ve heard about families getting an “Autism Advocate” to help with various issues, getting services, etc. I haven’t had much luck in finding out exactly what that is and how to get one.

1:25
You may be able to find an ‘Autism Advocate’ here.http://www.autismspeaks.org/community/fsdb/category.php?sid=45&cid=68
1:26
Comment From Jaz

Are there resources in Florida in order to seek an adult diagnosis?

1:27
Hi Jaz – you should look into getting a diagnosis from a psychiatrist or psychologist who has the experience in diagnosing adults with autism. You may want to check out our Resource Guide here:http://www.autismspeaks.org/community/fsdb/category.php?sid=12&cid=110
1:29
Comment From laura

thank you. Michael is currently in EI,OT,PT and speach. we just want to make sure we are getting him all the help he needs

1:30
It is key to know your child’s rights. That way you will be able to get all the services he needs and be able to properly advocate for him. Visit this page to learn more:http://www.autismspeaks.org/community/fsdb/category.php?sid=12&cid=110
1:30
Comment From Oma

I take care of my 5 year old grandson who was diagnosed with Autism last year. He has made tremendous progress but one thing we just can’t seem to get is him staying dry at night and during rest time. He is trained otherwise during the day and rarely has an accident. He also has big problems with chronic constipation… Any tips on how to help him stay dry? He wears pull ups at night… but not during naptime.

1:31
Hi Oma – This may be something that your grandson’s pediatrician can help with. They may be able to refer you to another specialist to get the proper help he needs
1:31
Good for you in trying to understand the problem. You are a great grandparent advocate!
1:32
Comment From Cindy

thanks for the tool kit–printing now and will sit back and red it this afternoon….much appreciated…….

1:32
That is great Cindy!
1:33
Comment From Oma

I will ask again. when I go to my new pediatrician. The last one gave medication for it, which my grandson hated and I ended up not giving. He is very sensitive to taste and smells and this stuff was awful…

1:33
Comment From Oma

I hope his new pediatrician will be able to help further.

1:33
What you are doing is right. You know your grandson best and continue to work and see what methods agree best with him
1:34
I’d like to invite everyone to sign up for our Community Connections newsletter
1:34
Community Connections, published monthly by the Autism Speaks Family Services team, aims to increase opportunities and awareness for people with autism and their families in their local communities.Each month’s newsletter explores a relevant topic with practical tips on dealing with everyday situations, links to local resources, and stories from experts and families who share their successful experiences.
1:35
This month’s Community Connections will be able ‘Back to School’ and how best to ease the transition for your child with autism
1:36
Comment From Oma

One last question, do you have any advise on how to make dentist visits easier?

1:36
Yes we do! The Dental Tool Kit!
1:37
Oral health is a very important component of healthy daily living. But for some children with autism, oral health habits can be challenging. Autism Speaks has teamed up with Colgate and Philips-Sonicare to create a dental guide and video to provide tips for improving oral hygiene at home, as well as information about how parents and dental professionals can make a visit to the dentist’s office less stressful and more productive. Our hope is that this guide will provide information for families to help begin a lifetime of good oral care.
1:37
Comment From Mae

I live in Ga, my grandson is 10 years old, could you please tell me where I can find assistance with medical and doctors visits. Where can I find support in my area I live in a small town..

1:37
Hi Mae – Autism Speaks Resource Guide is available online
1:38
Because you live in a small town, be sure to adjust the radius when searching by your zip code.

1:39
What type of assistance are you referring to? Financial or identifying professionals?
1:39
Comment From Sara

my son Andrew 2 1/2 just passed away he had ASD and epilepsy, and there is no transition assistance no foundations I could find to help single parents or parents who were not able to work due to caring for thier child, are there foundations that help financially in my area churches donate to CARES but they help $50 for rent or electric but not both… What am I to do?

1:40
Hi Sara – first let me say how sorry I am about your loss. Here at Autism Speaks we care about you and your family
1:40
AutismCares provides support for families affected by autism during natural disasters and other catastrophic life events. AutismCares helps families to cover costs associated with critical living expenses such as housing, utilities, car repair, day care, funeral expenses, and other essential items on a case-by-case basis.
1:41
Comment From Oma

This is awesome! Thank you! I signed up for your newsletter too. I am so grateful for all these resources. Caring for my grandson is an ongoing learning experience and all of this helps tremendously.

1:41
Great Oma! We are so happy we can help!
1:42
Comment From Amanda

I have a 6yr old son who was diagnosed 3yrs ago. We just moved from wisconsin to saint paul minnesota. I am having trouble finding a new doctor and programs here. Any ideas

1:43
It is best to get out in the community. Calling local agencies and talking with other parents are often the best ways to get a referral
1:44
Comment From Sara

Are there any grievance assistance for the loss of an ASD child?

1:44
Sara what you are doing is right and it is very important for you do to. You must take care of yourself. Seek a professional counselor in your local community
1:45
Comment From Mae

finincial and different support group with special help

1:46
Finding other families in your community affected by autism is truly the best way to get support
1:46
and also help to identify local agencies who can help. Being part of this chat is also a great thing to do!
1:46
Come back next Wednesday!
1:47
Comment From Sara

Thank you for your assistance he passed on the 23rd of July and everything seems unreal…

1:48
We are here to offer as much support as we can. Please be sure to contact AutismCares to help with financial assistance. Also please seek counseling in your local community
1:48
Comment From Angela

My son was diagnosed last week with high functioning Autism, he will be 4 Aug 25. Not potty trained yet among other things, any tips on potty training??

1:49
You can order the Asperger Syndrome and High Functioning Autism Tool Kit for FREE http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
1:49
You should be able to find tips about potty training there
1:50
Comment From Mae

I will come back chat has been very helpful.

1:50
Good we are so glad!
1:50
Comment From DeLanie Brewer

My son is 16, moderately autistic but 95% non-verbal at the moment, and within the last year has developed several patterns that look less autistic and more O.C.D.ish. Also, at the same time, although his speech has never been great– he’s gone from being about 60% non-verbal.. to about 95% to sometimes we cant get anything out of him. He tries, but it’s as if he cant the word out. Then, when he does it becomes like a “tick” that he repeats over and over for about a minute- literally. We’ve done brai scans… which were normal. Everyone I’ve talked to here in Okc is clueless- as am I. Any advice…?

1:50
Hi Delanie – you must keep searching for a professional that can meet his needs and help to sort this out.
1:51
You can order it here for FREE!
1:51
Are you in Oklahoma?
1:53
The Autism Treatment Network was established as the nation’s first network of hospitals and physicians aiming to bridge gaps in knowledge and understanding and to improve treatment for individuals with autism.
1:53
Comment From DeLanie Brewer

Yes

1:54
There isn’t a location in Oklahoma, but you may want to seek the closest one for a referral
1:54
Comment From DeLanie Brewer

What kind of professional would you suggest..? He is on state medicaid– so our resources are pretty limited

1:55
I think a psychiatrist or other specialist would best understand the overlapping conditions
1:56
Comment From Robbin

Hello: I have a daughter who is 19 years old. She was diagnosed as ADD. She started college 2 years ago about an hour and a half away from where we live. She had a real hard time adjusting and locked herself away in her room without going to any of her classes for two months. She anxiety when it comes to speaking with people and has been exhibiting some Autistic like behaviors. We also have a son who is 16 with Aspergers and my daughter stated that she has some of the same feelings as he does. Nevertheless, we are beginning to think that she may have Aspergers also and was just misdiagnosed. Where can I get her evaluated for Autism as an Adult? We live in NC

1:57
Hi Robin – why don’t you try getting a referral from your daughter’s primary care physician?
1:58
You should also check out our Asperger Syndrome and High Functioning Autism Tool Kit http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
1:59
Comment From Maribeth

My son 8 yrs old and newly diagnosed with ASD. We are trying to find OT for him, to help with his handwriting and social skills. There isn’t ANYWHERE in our county that takes our insurance. How do people find help when they can’t pay $70 or more per sesion?

1:59
Hi Maribeth – you should visit our Resource Guide to find an OT for him. Have you requested OT through the school district?
2:00
You can search the Guide according to your state
2:01
The costs of services can become outrageous. Luckily, we have the folks at Autism Votes working to represent autism familieshttp://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm.
2:01
We are so happy you all chose to visit our ‘Office Hours.’
2:02
It is so important for people to get meaningful information that is updated and readily available to help you in the day-to-day.
2:02
Comment From Maribeth

I am hoping that we will be able to get him help through the school. I have a meeting set up, but from what I am told, it is very difficult to get approved for it where we live. (palm beach county). It is mild, so I am trying to prepare myself ifthey don’t approve it

2:02
Way to go Maribeth! You are doing the right thing, just try and stay positive and keep advocating!
2:03
Be sure to check out our page of Tool Kits here:http://www.autismspeaks.org/family-services/tool-kits
2:04
Comment From Oma

Thank you for providing this service. It’s great to see others’ questions, too, and to see your answers. I downloaded quite a few things just from following the links.

2:05
We are glad you are using our resources!
2:05
Keep us posted on your progress!
2:06
Comment From DeLanie Brewer

This is sooo cool, THANK YOU!!! I don’t know why, but I’m sitting here in tears. –Thank you!

2:07
No, DeLanie Thank you for joining! Be sure you are all taking care of yourselves. This is a lifetime of advocacy and sometimes you just need a break.
2:08
We are always here to help point you in the right direction. Never hesitate to call the Autism Response Team. Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org
2:09
We have noticed there are several adult questions. Recently, Peter Bell was featured on PBS’s ‘Need To Know’ and he covered this topic. To watch the segment visit our Blog.http://blog.autismspeaks.org/2011/08/02/peter-bell-featured-on-pbss-need-to-know/
2:12
We have also been creating discussion around ‘Topic of the Week.’ This week, we are preparing to head back to school. Visit our Blog and tell us how you prepare!http://blog.autismspeaks.org/2011/08/01/back-to-school/
2:15
Comment From sarah

hi i live in england. i have a 3 and a half year old son with autism. our family is under continues stress, all due to my sons behaviour, he is still not talking propley and has lots of tantrums due to his different understanding. i need help but have nowhere to turn.

2:16
Hi Sarah – you can check out the 100 Day Kit. Be sure to start building a team of professionals that can assist you and your family. We know if can be very stressful, but assembling a team of professionals you can trust and that understand your son is key
2:16
Realize that there are going to be bad days but keep searching and don’t give up.
2:17
It will make all the difference in the world when you find professionals that know your son’s needs
2:18
Comment From Jamie

My daughter has serious texture/gag reflex issues with her mouth. It really limits her food… any advice?

2:18
Hi Jamie – are you working with a professional that can offer you advice? Diet and nutrition is so important and this should be addressed by a professional.
2:19
Here is a link to the Diet and Nutrition section of our Resource Library: http://www.autismspeaks.org/family-services/resource-library/diet-nutrition
2:20
Comment From Jamie

Thanks. Is this something a pediatrician would know, or do I need to have someone specializing in Autism?

2:20
Your pediatrician should be able to refer you to a nutritionist that may have experience in both feeding issues and autism.
2:21
Comment From Jamie

Thanks so much!

2:21
Your welcome!
2:21
Comment From Guest

hi! The only problem my son doesn’t seem to have is eating!! He does, however, have a vocabulary of zero and looks like a third-base coach with his sign language. He’s working with a speech teacher but we seem to be at a stand-still… are there any suggestions or resources that you can recommend to help us develop his speech more?

2:22
Well you must ask, “Why is he at a stand still?” As a parent you always ask why is he not making progress with his speech.
2:23
The discussion should be between you and professionals trying to figure what ways can help drive his speech development. Sometimes it can be can be frustrating, but just be sure to understand what his issues are.
2:24
Comment From Guest

My son is now 19 and he wants to fit in with other young people however, they simply take advantage of him and manipulate him into things that are destructive and hurtful to him. Still, he wants to be with them. How can I get him to see the danger? How do I NOT lose patience? He has always been this way. ANYONE can manipulate him, take his property and coerce him into doing things.

2:24
This is so hard for a parent to watch. You must help him develop self-advocacy skills.
2:25
The Transition Tool Kit covers the importance of self-advocacy skills.
2:26
Comment From Amber

my son is 6 and entering 1st grade. I worry about his aggression. He is currently taking Stratera. Any thoughts or suggestions?

2:27
Hi Amber – it is important that you communicate these feelings with your IEP team. Everyone must be on the same page about addressing his aggression issues
2:27
You should seek to have a behavioral therapist work with your son on this
2:28
The first step is to make sure you communicate your concerns with the IEP team or your professional network. Be sure loop in your pediatrician
2:28
Comment From Jessi

I’m searching for info for adults, all I can find is chidren’s resources

2:28
Hi Jessi! We have plenty of adult resources
2:28
The Transition Tool Kit can be found here :http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
2:29
The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.
2:29
Advancing Futures for Adults with Autism(AFAA) is another initiative that Autism Speaks in involved in.
2:30
We are working hard to bring attention and awareness to adults with autism. You can also search our Resource Guide by your state for adult services, here :http://www.autismspeaks.org/community/fsdb/search.php

2:31
We would like to thank you all for participating in our first ‘Office Hours.’ We hope that you found this session helpful. All of the information will be archived so you can return to it whenever you need.

2:31
Please join us again next Wednesday and at 1pm EDT! We look forward to next time

2:32
Remember, you can always contact The Autism Response Team: Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.

Moving Out

July 14, 2011 21 comments

This is a guest post by Pat Kemp, Executive Vice President – Marketing, Corporate Relations and Development at Autism Speaks and the father of a young man with autism.

Tears were pouring down my cheeks as I was typing my 5 sentence letter to my son explaining to him that he was being asked to leave of my house and would not be living with me anymore.  See, Ryan is not just any child; he is a special needs child who functions on the low end of the autism spectrum.  He is nonverbal and very vulnerable.  However, according to my attorney, Ryan could not live me after he was 18 if I wanted him to be eligible for housing and other subsidies.  It was time for him to learn how to ‘live on his own’.  How sad, yet I wrote and signed and dated it because it was how the ‘system’ worked.  I still needed him protected in a safe and secure environment.  So we went house hunting.

Ryan’s first home after ‘declaring his independence’ was a house that I was able to rent in his name at OATS (Offering Alternative Therapies with Smiles).  OATS is a 55 acre horse farm in northern Oakland County that provides horseback riding therapies for individuals with special needs.  Ryan had been a participant in the program there since it opened up in the late 90’s, so he was familiar with the surroundings.  Plus, the entire property was fenced in so I at least could feel that he was safe.  This worked out for a couple of years until I found a house to rent on a lake (Ryan loves the water) in Davisburg.  The landlord has a daughter with Aspergers and lives next door, so he understands the situation.

I moved Ryan into his new home in Davisburg and put a sign on the front door that says “Ryan’s Party Place”.  It is his private bachelor pad with athlete pictures on the walls, a pinball machine, an air hockey machine, etc.  He visits my place once or twice a week and we stay in contact so I know he is safe and he knows I care about him.  We call it that he needs some ‘Dad time’.  I also need my ‘Ryan time.’

The next challenge was to get Ryan a job and teach him how to communicate better on his own.  First things first, time to get a job.  Ryan loves the outdoors.  He and I have volunteered for many years to feed the horses and clean the stalls at OATS on Sunday mornings.  I knew he had the skills to do this job, but OATS is a 501(c) 3 charity so I didn’t want to ask for Ryan to get a paying job there.  After many months we secured a janitorial services job 8 hours/week at The Palace of Auburn Hills.  Since Ryan loves the Pistons, I thought it would be a natural for him.  So far, so good.  He has his good days and his not so good days.  He gets to wear a special shirt with his name badge on it which he likes a lot.  He also gets to eat lunch at the employee cafeteria which he really enjoys.

Communication is a longer term project.  For Ryan to really function independently, his communication skills need to improve exponentially.  I bought him an iPad and we are programming that now.  We have met with communication specialists and have ideas that we want to work on.  Yet, like many children with special needs, Ryan inevitably surfaces another problem that needs to be addressed.  Most recently it was an incredible need for O.T. which we are working on with specialists.  Who knows what tomorrow will bring.  Hopefully sunshine.  Ryan likes sunshine.  One thing I learned to accept a long time ago is that autism is like running a marathon, it isn’t a sprint.  Patience, focus, persistence and advocacy are the keys to providing our children a brighter future than today.  There are never ending needs for services for these individuals.  We, as parents and advocates of individuals with special needs, need to stick together and fight for their rights.  What I have also learned is that it is not important whether Ryan lives with me or not.  I wasn’t giving him enough credit that he was ready to live on his own.  However, I will never forget how difficult it was for me to sign that letter 9 years ago.  My tears are still wet on my cheeks, but at the end of the day, I think I made the right decision.

Janet Grillo Talks ‘Fly Away’

July 12, 2011 1 comment

Janet Grillo, an Emmy Award winning producer, an Award winning writer and director, and a former Studio Executive, sits down to discuss her film, FLY AWAY.

FLY AWAY’s narration of teenager with autism is relatable for many families. The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.  For more information, visit here.

Here is the theatrical trailor

“FLY AWAY is now available nationally on DVD for sale/rental/streaming, or on VOD.” For info contact http://www.flyawaymovie.com, 10% of proceeds benefit Autism Speaks.

New Video DVD: http://www.newvideo.com/flatiron-film-company/fly-away/

Netflix: http://movies.netflix.com/WiMovie/Fly_Away/70170708?trkid=2361637#height601

iTunes: http://www.iTunes.com/Movies/FlyAway2011

Amazon: http://goo.gl/1uUo7

TimeWarner Video on Demand:http://goo.gl/aykS2

An Employment Story

July 7, 2011 6 comments

BJ is a young man who is affiliated with Ken’s Krew, Inc., a nonprofit corporation, is to provide vocational training and job placement services to young adults with intellectual and learning disabilities who are transitioning into the workforce.

My name is B.J. Ivey I am 29 years old and have been with the home depot and Ken’s Krew for 9 years you can tell how old I am by how many years I have been working at the home depot. I was first introduced to Ken’s Krew back in 2001-2002 when it was still called Ken’s Kids I was at CAT Pickering trying to take some more machine shop training that was the tech area that I was in when I was in 9th grade. But it didn’t work out the teacher quit 5 days before the start of school. So I tried carpentry but I wasn’t good so then I went to electronics and that fit me well as I was doing my extra learning I tried to get help with going to college and there was one in Vermont that was geared towards kids with learning disabilities but they said that I didn’t have the kind they mostly teach with which was dyslexia. I didn’t know what to do so one of the teachers found Ken’s Krew and called them up and that’s how I met Debbie I am working at the Frazer home depot as the pro loader meaning I help out with the contractors mostly loading cement, drywall, and lumber. I was chosen as a co captain for the project at a school for kids like me it felt good to be a leader and while I was there I saw my old boss our project was to build a deer fence around the green house we put in posts filled them with cement and then wrapped deer block ours was probably the longest project because while we were working almost everyone else was done and yes I had fun working with everyone. While I am working at the home depot I hope to try and become an anime writer I have some stories written out and I want to find a producer that will help me I am saying this because when I went to a school for the disabled there was a kid who owned his own business I was surprised by that thinking his type of disability would hold him back. I am enjoying working at the home depot and I might be there for a while longer.

Communicating Through Cupcakes

July 7, 2011 23 comments

This is by Lena Rivkin, M.F.A., is an artist and graphologist living in Los Angeles.

Can you count the stars? Impossible! It’s just so comforting to look up and see that they are there, that you can count on them coming out every time. That pretty much describes the way I feel when I’m hanging out with Phillip at his house…when we’re baking cupcakes together. I look up at his face flushed with joy and watch as he adds the final touches – sprinkles, maybe – to the icing of his latest creation. In a fast-paced world, baking with Phillip is a quiet moment in time.

​For those of you who read my previous article about him, you’ll remember that my older brother Phillip, who is severely autistic and nonverbal, loves to stitch needlepoint. I create the designs and Phillip is the craftsman. Our collaboration provides a special connection between our worlds – without words. He has been living for 29 years in a group home administered by New Horizons (a non-profit organization dedicated to helping adults with developmental disabilities) in North Hills, California, and attends a day program at Tierra del Sol in Sunland.

​Since Phillip always exhibits a marked interest in repetitive behavior, for years we have engaged in needlepoint projects together at my house. And lately, we have been hanging out at the place where he lives to bake together.  We particularly enjoy baking cupcakes.  Historically, a recipe for a small cake first occurred in the U.S. in a cookbook appropriately titled American Cookery. It was written by Amelia Simms in 1796. However, the actual word cupcake (because it’s the size of a teacup) was first used in 1828 by Eliza Leslie inSeventy-five Receipts for Pastry, Cakes, and Sweetmeats. When Phillip and I bake cupcakes in 2011, we are entering into an innovative space where we can create an edible form of art.

​First we line each section of the muffin pan with crinkly, colorful paper cups, a simple, repetitive process that Phillip enjoys. Then we make a host of cupcakes, ranging from…oh, red velvet cupcakes with vanilla cream cheese frosting or pineapple-carrot, or dark chocolate with raspberry frosting. (Did you know that the height of the frosting should be about one-third the height of the cupcake? Sometimes, when we are feeling really daring, we make the frosting one half of the whole. It’s fun.) And we make strawberry and chocolate-almond, lemon-fudge, or orange-spice cupcakes too.

​The ingredients for cupcakes are all pretty much the same: butter, sugar, egg, and flour just like a standard layer cake. Yet what we end up with is a creation. For my birthday, we felt really expansive and made a full-size chocolate cake. We design our cupcakes differently every week, even though we start with a very ordinary cake mix. Sometimes we dip dried or fresh fruit into chocolate. The visual effects are very important, just as they are when Phillip is keeping busy translating my designs into his meticulously crafted needlepoint. In fact, while the cupcakes are baking, he works on his needlepoint.

​As with the needlepoint, there is a therapeutic process at work when we are baking. It involves eye and hand coordination as well as the joy of creation – and a sense of place. Although I still take Phillip to my house and other places (museums, parks, stores, and visits to friends), when we make cupcakes, we are enjoying being together in a consistent way in the place where he lives – his house. I feel that I am truly participating in his daily life with these home visits and learning about his activities, as well as the chores that are required of him. I particularly enjoy getting to know the outstanding staff – Samir Qureshi (the House Manager, who is also an excellent cook) and another member of the staff, Jamie Page, who are both an essential part of our weekly baking activity with their supportive and positive help with the baking.  I am also becoming closer to Phillip’s friends.  Everybody loves eating the cupcakes, so there is plenty of joy to pass around! Because the cupcakes bake quickly, while a tantalizing aroma fills the house, we don’t have to wait long to enjoy them.

​Cupcakes have attracted wide interest today. In fact, cupcake-making has become a competitive “sport.” There are actually “cupcake wars” sponsored by food companies where people vie on television to win big prizes for the “best” cupcake recipe. But Phillip and I, his friends and the supportive staff don’t want to enter our cupcake recipes into showcase competition. We simply love the warmth of making them and sharing them in friendship together.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Finding Meaningful Work in Difficult Times

June 23, 2011 12 comments

This is a blog post by Tracey Daigneau, M.Ed., Director of Day Services at New England Village.

Finding meaningful work for an individual with autism can be quite a challenge, needing to match skills and motivation with an appropriate job within the community. When you factor in external factors such as the economy, employer biases and lack of awareness of ASD it often becomes an overwhelming task.  At New England Village’s Employment Services program, we have the challenge of finding varied, consistent and meaningful work for over 70 adults, many of whom have ASD.

For the past twenty years, we have sought to provide work for our residents and day participants, primarily in the field of manufacturing.  Jobs such as assembly and packaging were ones which the vast majority of our population could do and enjoyed, often earning a nice sized paycheck as a result of their hard work.  Unfortunately, the past decade has seen quite a shift in manufacturing throughout Massachusetts.  Jobs becoming automated and going overseas, companies moving out of state or turning to other sources of inexpensive labor to cut costs has resulted in a significant decrease in available work opportunities for the individuals we support.

The unenviable task of finding year round work falls upon our program director, Rick Moulton.  A career in sales as well as the past decade spent in Human Services has served Rick and New England Village well, but the challenges listed above have made his job an extremely difficult one.  When work is not consistent, Rick hears about it from persons served, their families and even our own staff.  All are aware of the challenges he has but the bottom line is our expectation is to provide work for each and every individual, all with varying levels of skills and motivation, every day they attend our state of the art work center.

In an effort to lessen our reliance on available contract work in manufacturing, New England Village decided to take our destiny into our own hands by starting several of our own “business ventures.”  Established businesses in Landscaping and Cleaning had made us cautiously optimistic that we could find another business that provided meaningful, enriching work and also fit our organizational mission and philosophy.  We had previously done some packaging work for a local jewelry company and our success with this job combined with the interest many persons served had in creating jewelry led us to establish our third business, True Meaning Jewelry (TMJ).

We sought to create jewelry that fit our mission and as a result, decided to focus on developing a line of awareness jewelry.  A variety of causes were investigated but it was our partnership with Autism Speaks which has played the biggest role in our success.  Through this partnership, sales have increased dramatically, resulting in persons served assembling each and every piece of jewelry sold. Although the paycheck from this work is satisfying, the greatest benefit is the sense of pride one gets when they create a bracelet or necklace that has been ordered by one of our valued customers.  We have shipped our jewelry throughout the country and recently had our first international order!  Although many persons served still enjoy and benefit from the somewhat repetitive contract work described above, TMJ has become the job of choice for many individuals.  It fills a need which each of us has when it comes to our job: to feel valued, challenged and ultimately fulfilled.

As we move forward into our third full year of this business, it is not without its challenges, much the same as those any start up business faces.  Having enough volume to keep several people busy daily has been difficult and we have attended various local and state events such as the Greater Boston Walk Now for Autism Speaks as a supplement to our web based sales.  Although we have run a fairly significant deficit each year with TMJ, we are able and willing to continue this business due to it fulfilling our primary goal of providing work to persons with ASD and other developmental disabilities.

Autism Speaks has been a tremendous partner to New England Village and their willingness to promote and market our autism awareness jewelry is something that we are proud and appreciative of.  We remain hopeful that the partnership we have established with AS is one we can duplicate with other national foundations and associations which will ultimately result in additional work opportunities for those we support.

I was struck by a recent blog on this site that stated “All parents want the same things for all their children: loving friends, good health, work that is meaningful to them.” I hope some readers of this blog realize that they are not in this alone and that there are many committed professionals in the field that support adults with ASD, hoping to make a difference in the employment opportunities they have.

Click here to visit the True Meaning Jewelry web site.

Autism Speaks Live Chat with Rodney Peete

June 17, 2011 9 comments
6:54
Hi, I’m Rodney Peete, Co-Founder of The HollyRod Foundation. I am so excited to be here to chat with you and I share our story. I hope that I can help you along your journey
6:55
Comment From Rae

how did your son’s inital diagnosis effect your relationship with your son?

6:55
Hi Rae!
6:56
My son’s initial diagnosis really started to drive a wedge between us because I didn’t know what autism was
6:56
As he started to withdraw and become more non-verbal I didn’t know how to interact with him. Mostly it was because I did not know about autism so I needed to educate myself
6:56
I was heavily in denial about his condition and diagnosis
6:57
I probably, like many fathers, thought I could fix him.
6:57
I used my own methods of connecting with him and they never worked
6:58
Comment From Phyllis

Any advice for me I have a 17ry old son with autism and am going thru a divorce, he blames me for everything?? Makes me sad.

6:58
Hi Phyllis I know this must be a difficult time for you
6:58
Due to my denial, my wife gave me an ultimatum. I got on board or out of the house
6:58
I had to choose between my family and my own ego
6:59
Once I chose correctly we were able to move forward as a family
6:59
The most important thing, in going through this divorce is your 17-year-old son
6:59
Comment From HEIDI

RODNEY- ALTHOUGH WE’VE COME ALONG WAY , IM STILL SO SCARED FOR MY 18 YR OLD SON- WHO IS ON A 4TH GRADE LEVEL- I THINK MORE SO, AFTER HEARING WHAT HAPPENED TO JOHN TRAVOLOTA’S SON- TO HAV FEARS???

7:00
Hi Heidi
7:00
Our son is 13 now and we are thinking about his adulthood and it is a scary time
7:01
We need to do a better job as a society working with children who become adults with autism, whether is be jobs, education, housing, integrating into mainstream society.
7:01
These all need to be dealt with
7:01
No matter what age, you must continue to be an advocate for your son
7:01
Comment From Adam

Hello Rodney. Go Trojans!!!

7:01
Fight On Adam!
7:03
Comment From Tom

How old was your son when he was diagnosed

7:04
hi tom Rj was diagnosed at age 3
7:05
Comment From Robert

Rodney , Having a son with Autism also i have learned to love all the little things the way he says hi daddy or “Tickle Me” love the book and keep spreading the word

7:05
Yes Robert, it is about small wins
7:05
I can remember the first time my son said, ‘I want some french fries’ from the backseat. I thought it was the same as us winning the championship game!
7:06
Comment From Erin

How do you make sure you have a great relationship with your other children? I find it difficult to make sure there is enough time for everyone and am always afraid someone will feel left out!

7:06
Eric, yes it is very difficult
7:06
RJ has two brothers and a sister
7:07
What we have done is make sure we have educated his brothers and sister about autism, about his abilities so they become advocates for him. They are part of his therapy. Everything they do in interacting with him has helped us engage everyone in this fight
7:08
We are getting so many questions which is so exciting!
7:08
We are trying our best to answer them all – keep them coming!
7:08
Comment From Greta

Can I just get off topic for a second and tell you how excited I am to see you here! My son, Austin, is 5 and was just diagnosed – he’s very high functioning, and I’m very grateful for that. But I am a huge Dallas Cowboys fan (born in Dallas) but I grew up in Mesa. We’re the same age. :) Anyway, I just bought your Kindle version of your book for my husband. I am looking forward to reading it after he’s finished. Thanks for everything you and your family do.

7:09
Thank you Greta- we are all in it together!
7:09
Comment From Ric

Was it hard to play football and to raise your child?

7:09
YES Rick – Thanks God I had a rock for a wife
7:10
She rolls up her sleeves at every stage- talked to every doctor, really jumped in with both feet, while I was away playing football!
7:10
I like most dads wanted my son to follow in my footsteps
7:11
I saw my teammates bring their kids in the locker room. When I brought my son in, he didn’t really understand the gravity of what was going on
7:11
I really had to come to grips, that it was about him, not about ME. Once I did that, our relationship flourished
7:12
Comment From HEIDI

RODNEY IM SURE UR OVERWHELMED WITH COMMENTS, IS THERE ANY STRUTURE TO LIVE CHAT???? IM CONFUSED??

7:12
Heidi, there are just so many coming in, and we are trying our best to answer them all. THANK YOU ALL for being here
7:12
We still have 45 minutes!
7:14
I wrote a book last year called, ‘Not My Boy!’
7:14
The reason I called it that, was because that is how I felt at the diagnosis. ‘No way, Not my boy!’
7:14
Understanding the journey we were about to go on, I became very selfish
7:15
I made it all about me, when really it was about him. I did not pay attention to therapy or other families who would try and talk to me. I wouldn’t even talk to my wife!
7:15
It drove a serious wedge in our relationship. She was onboard and I wasn’t.
7:16
I think part of me was embarrassed because I didn’t know how to handle in in public, but what I realized later, is that he has gifts, just like every other kid. We must pay attention to the give HE HAS, not the gift we want him to have
7:17
Here is a link to by book, if you are interestedhttp://www.facebook.com/autismspeaks?sk=app_225711834125562
7:18
I turned a corner through an embarrassing moment
7:18
We had a collective meeting with all of my son’s therapists and I was asked to show them how I was interacting with my son at home
7:19
When I attempted to do this, everything was completely wrong. RJ gave me NO response
7:19
When the therapist interacted with him, he laughed, joked and smiled. They were connected. At that moment, I knew if I was going to have a relationship with my son, I had better educate myself and accept this.
7:19
I had better be onboard 100%
7:19
Comment From Elizabeth

How did you and your family handle the looks and stares and ugly little comments that can really make you feel bad?

7:20
Elizabeth, that was a great question
7:20
Although part of you wants to lash out at the people that are staring and passing comments
7:20
We try to use those moments as teachable moments in educating people about autism.
7:21
I talk about a moment in my book, when our son was in the 4th grade and he was not getting invited to playdates and birthday parties and his twin sister was
7:21
A lot of it was, the kids and the parents didn’t understand what was going on with RJ
7:21
we called a meeting with his classmates and hosted an ‘Autism 101′ with Holly and myself
7:22
we let the students ask questions, ‘Why doesn’t he say hello?’
7:22
ALL questions were asked and we took the ‘scary’ out of autism
7:22
we told them that there are some things RJ is Good at and some things he is bad at
7:23
He is bad at making friends, BUT he is good at giving the capitals to every state
7:23
The kids got it
7:23
They came back with, ‘I am good at soccer, but stink at math!’
7:23
It was the kids that educated their parents about RJ
7:23
From that moment on, he had a great group of friends, that he still has to this day
7:26
My wife and I founded The HollyRod Foundation
7:26
It is all about helping families and raising their quality of life. Once our son was diagnosed, we moved our focus to that
7:27
We began speaking about autism and how it affected our family. When we received a diagnosis, we had no outlets. We want to provide the light at the end of the tunnel
7:27
Comment From Alyssa

My husband hides behind his work as the excuse why he hasn’t really connected with our 2 autistic boys. Any ideas you have that I could use as a first step to building a relationship?

7:27
You can learn more about us here, http://www.hollyrod.org/
7:27
HI Alyssa
7:27
I was the same way.
7:28
The first step is trying to understand where he is coming from
7:28
I did not hear my wife the first 2 years after the diagnosis. She didn’t want to hear about my feelings about being a father and what I expected about my feelings for my son
7:28
I wouldn’t approach it as you need to interact with you son
7:29
Approach it as, it is okay you are feeling like this. But you need to connect with your son. Get to know him first
7:30
Comment From Mike S

isnt it true that 50 percent of married couples with a child who has autism get divorced? i think its not fair to walk away from each other because of that?? i have a 7yr old with autism been married 9 yrs

7:30
Hey Mike
7:31
I don’t know if that statistic is accurate
7:31
But i do know, that sometimes one parent takes the lead, while the other lags behind, which sometimes causes friction
7:32
It is important for both parents and the whole family to be educated and onboard. It is okay whatever all happens, as long as the family is involved
7:33
I am so impressed with all of the parents and families members on this chat. It is amazing how the community has come together and I am thrilled to be a part of it!
7:34
Comment From Lena

Hi Rodney! Our sons are the same age? How are you and Holly handling puberty? I was told that our boys are more intense than other boys their age.

7:34
ohhhh Lena, you’ve got that right!
7:34
My son is going through puberty right now
7:35
and it is definitley having some effects on his emotional state
7:35
He is certainly now interested in girls!
7:35
I have to to be honest, it scares me!!
7:35
I have had ‘The Talk’ with him several times
7:36
but until he has experienced, ‘hanging out’ or ‘holding hands’ or anything like that, I won’t know how he responds
7:36
He gets very giddy and excited when his sister’s friends come over!
7:37
Comment From Guest

Do you have any advice on how to handle meltdowns public?

7:37
This is a difficult one, because you don’t always know when they are coming
7:37
Every child is different
7:38
What works for us, is we always have candy
7:38
Some people think it hypes a child up, but it works for us in public places
7:38
Whatever works, works!
7:38
Comment From REST

How can I help my husband accept and understand our 12 yr old Aspergers son?

7:39
Hi REST
7:39
I recommend my book- I cover denial, anger, and everything in between
7:40
Sorry! here is the right link to ‘Not My Boy!’http://www.amazon.com/Not-My-Boy-Familys-Journey/dp/1401323618
7:40
Comment From Mary Len

How old is RJ now and what kind of school environment is he in?

7:40
Hi Mary Len
7:40
RJ is 13
7:41
Last year he graduated 6th grade in a mainstream school
7:41
with his twin sister!
7:41
6th grade was very difficult because he was reading at 4th grade level. He managed, with a shadow, to do very well
7:42
There was a high level of anxiety when thinking about Middle School
7:42
We decided to give him a break and create a home school program for him for a year
7:42
He will enter 7th grade Middle School in the Fall and thankfully, he will be able to have a shadow with him
7:43
There was a lot of anxiety with him in 6th grade with him
7:43
He couldn’t keep up with his friends academically, which created behavioral issues that were not good for him
7:43
He took the rigid pressure of going directly to 7th grade, and he is back to being a happy excited, flouring kid
7:44
It is OKAY that he goes at his pace, not someone elses
7:44
It is about, the child, and what is best for him
7:46
Comment From anne

do you know where families can go who have an adult child with autism and get financial help for services that medicaid no longer covers, like dental

7:46
Hi Anne
7:47
This is a question that so many families face
7:47
Holly and I are frequently asked about this
7:47
Autism Speaks developed, the ‘Transition Tool Kit’
7:47
The Autism Speaks Transition Tool Kit was created to serve as a guide to assist families on the journey from adolescence to adulthood.
7:48
It covers housing, employment, advocacy, and an array of other topics
7:48
Comment From Demi

I heard yall tried the non glutien diet how has that worked for your son?

7:48
Hey Demi!
7:48
We did try the non gluten diet
7:49
It helped him, especially when he was younger, with focus
7:49
He is allergic to peanuts
7:49
With his diet over the last 10 yeas we have monitored it for him and it has been very helpful
7:50
Comment From Kathy

Rodney, I have two boys both with Autism, one is 8 the other is 6. You are so right, we have to educate society and ourselves to be able to help every child with Autism. Everyday is a blessing and a battle but you begin to appreciate the little things that are accomplished. I thank you and Holly for all of the wonderful things you have brought to help with the fight for a cure. Thank You

7:50
Thank you Kathy
7:50
Comment From Keisha

I saw the episode of The Talk that you did with Holly and Joe. It was so awesome. I think I need to buy your book for my husband. Somethimes we end up on opposites sides in dealing with our 12 yr old’s Autism

7:51
Hi Keisha – that was a great show too!
7:51
A many thanks to CBS and ‘The Talk’
7:52
Thank you for allowing Holly to have a voice
7:53
Comment From Paula

Is your son aware of his diagnosis? I haven’t told my son yet. I think he knows he is different though. The school is pressuring me to tell him. I just can’t bring myself to do that.

7:53
Here is a link to ‘The Talk’s’ Show with Autism Dads!
7:54
hi Paula
7:54
Yes, my son is aware
7:54
We thought it was important that he understood what autism was
7:54
He needed to know what he was going through
7:54
Around 6 or 7
7:55
It is important for kids understand what is in front of them
7:55
Now that he is 13, he blames autism!
7:55
Now he thinks it is funny!
7:56
Once, he left pizza under his mattress for 2 weeks
7:56
and he blamed autism!
7:56
When I asked him why!
7:57
It was my pleasure to be here today to chat with all of the families. It is very clear you are all passionate and are trying to find the best way to advocate for your child
7:57
Remember, we are in this together
7:57
I encourage you to visit autismspeaks.org for more resources and information
7:58
My best advice would be, continue to educate the public
7:58
The more people understand, the more acceptance our kids will have
7:58
Thank you so much – I wish I could stay longer!
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