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Q & A with Areva Martin Recap

July 27, 2011 1 comment
Here is the transcript of the LIVE Facebook Q & A with Areva Martin. 

About Areva Martin
Areva Martin is a nationally recognized legal authority and expert on autism who has been featured on many radio and talk shows. She is the author of the Amazon Bestselling book,The Everyday Advocate: Standing Up for Your Child with Autism and Other Special Needs.

A Harvard-educated attorney, she has helped hundreds of families gain access to services and educational programs for their children with autism. She is co-founder and president of the nonprofit Special Needs Network. She lives in Los Angeles with her family, including a ten year old son who has autism.

6:56
Today we have a special guest, Areva Martin. Areva Martin is a nationally recognized legal authority and expert on autism who has been featured on many radio and talk shows. She is the author of the Amazon Bestselling book, The Everyday Advocate: Standing Up for Your Child with Autism and Other Special Needs. A Harvard-educated attorney, she has helped hundreds of families gain access to services and educational programs for their children with autism. She is co-founder and president of the nonprofit Special Needs Network. She lives in Los Angeles with her family, including a ten year old son who has autism.Every family has concerns and questions about how to successfully include a family member with autism in their community. Martin, a parent of a child with autism, and an attorney will share her own experiences and answer questions about how to step up to community inclusion!
7:00
Comment From Teresa

I really believe that someone in my family is high -functioning aspergers, but she refuses to accept the diagnosis, and wants nothing to do with help.

7:00
Hi Teresa
7:00
This is very common – parents often have a difficult accepting a child’s disability
7:02
The best thing you can do is be patient and supportive. I recommend you share an article or book about the topic to introduce it without being overbearing
7:02
Make sure to give the family member time
7:02
Comment From Denise

are we going? or am I frozzen here?

7:02
Hi Denise! We are getting started and will try to answer every question we can!
7:05
The key is to know what your child’s rights are under federal (IDEA) and state law. Under IDEA, parents are a vital part of the IEP process and can’t be brushed off. You have the right to request that your child be assessed and that services are provided. I recommend providing the school with a copy of IDEA, which you can find on line. Hopefully, they will get the message and include you in the process. If not, you may have to consult with an advocate or attorney.
7:05
Comment From Genny

My son is now 18 and has Autism. We decided to keep him in high school for an additional year to plan out his future a bit more. What type of opportunities does he have as an adult with autism and severe learning disabilities. We have filed for SSD about two years ago with no luck because of claims he’s not severely disabled enough to meet their standards. What other plans or schools can help my son mature and learn even with his disablities?

7:07
Hi Genny, the good thing is that there are a lot more programs being developed for adults on the spectrum. Check with your local junior college. Most have programs for kids that focus on life skills, independent living and job readiness training. Also, check with the Dept of Rehabilitation in your community. They too should have programs for adults. Good luck.
7:07
Comment From Guest

My 10 yr old has high functioning Autism, and he’s very mean to his brothers and me and disrespectful but he doesn’t feel like he is. My other son thinks that my autistic son gets away with everything because of his autism, how do i deal with this

7:09
Guest, thanks for joining us. You report a very typical problem which occurs with a lot of siblings. I have a chapter in my book, The Everyday Advocate, that addresses this issue. The reality is that your entire family could benefit from counseling. Figuring out how to balance the needs of all of your children is the key. Also, your son on the spectrum could also benefit from social skills training to help him learn how to treat others and how to be a part of not just the family, but his broader community. Good luck!
7:10
Comment From angel

My son is now 15. How do I help stop the regression back into the behavioral problems.

7:12
Angel, regression is something that all parents have to address. Try to find some programs in your community where he can practice the skills he has acquired. Often kids learn skills in therapy, but they do not get enough practice in the community. I am a big inclusion advocate. I suggest taking your son to the movies, to the mall and all the places 15 year old kids like to go. Take along a typical peer and a trained therapist and practice, practice, practice. Trust me it will make a big difference. You can also get the family involved and they can do a lot of maintenace of skills at home. Hang in there.
7:12
Comment From Jim

My son is 10 and has autism, what are some of the things that I can do for him?

7:14
JIm, the best thing you can do is make sure you have an educational and community plan that maximixes his gifts. Find out what he likes and use it to motivate him to grow academically and socially. Ten year olds love sports. I suggest that you find a local club or community center and get him involved. You will be amazed at his capacity when given the proper interventions and support. Stay with it and know that you are making a difference!
7:14
Comment From Tash

My 3 year old little girl has a hard time while shopping no matter what i do to try and keep her happy, she gets very upset and always has tantrums on the floor… I dont know how to handle that and im also worried about what i will say or do to the parents who have an opinion or continually stare at my daughter… any advise will be great..

7:17
Tash, first forget about the folks that are staring! Quite frankly it ain’t there business! You can not be ruled by others’ lack of knowledge. Now, for the tantrums, you have to find out what triggers them. I suggest you start using social stories to prime your daughter for shopping trips. Get some pictures of the store, the items she will see and do a lot of work before you set foot in the store. Also, consider going at off hours when the store isnt crowded. Plan to be there for 5 minutes then gradually work your way to a longer trip. Remember, all kids have tantrums, so your child is not that different. And like other kids, you can find a way to make shopping a brezze!
7:18
Comment From Careese

I read your book and felt very Empowered but lately I’ve felt very overwhelmed and I can’t even bring myself to read anything about Autism. He has High Functioning Autism, I’m overwhelmed and we’re going on 2 yrs of knowing..

7:20
Careese, I am so glad that you got a copy of the book and that you felt empowered by it. I hope you remember one of the things I reiterate throughout and that its that being an advocate is a life long pursuit. All of us get tired, trust me. You are not alone. The key is pacing yourself and never forgetting that your work is invaluable. Your child will have autism for a life time. Take a little break if you need to. You deserve that. Then when you fill restored, and you will, get back at it. You are more powerful than you know!! Stay strong.
7:20
Comment From jon

Hi Ms. Martin,

7:20
HI Jon! Thanks for joining us today.
7:20
Comment From Shevon

not all of my fam member know about sons disability

7:23
Shevon, I guess by your question you have not been able to discuss your son’s diability with your family. Don’t beat yourself up about this. Its hard sitting down talking to folks, even loved ones, about our kids. In my book, The Everyday Advocate, I talk about creating empowerment circles–groups of folks that can help you in this journey. I suggest you create your own circle of folks that you trust. They may be able to assist you approach your family when you feel the time is right. However, I want you to know, often family members already know even if they aren’t talking about it and they just may be more understanding than you think! Good luck.
7:23
Comment From April

Thank you for supporting us on AS. We have a very challenging school district and head to mediation on Monday with possible Due Process. What are some of your advice on this process?

7:25
April, my first piece of advise is go to your mediation with an open mind. Although you may not get everything you want from mediation, you do get certainty and closure. Next, make sure you have thought about what is really important to your child’s educational process and that those are the things you stay focused on–dont lose sight of the forest. Sometimes in litigation its easy to get stuck on the small stuff. When our kids are involved we need to be objective and to do that you may need to take someone with you who can be more analytical as you may be too close to the sitution. I wish you the best. 
7:26
Comment From Amy

How do I get my church more involved with my son? They almost seem uncomfortable, I could use the support and he could use the interactions?

7:30
Amy, this is an excellent question and right on point for today’s topic. The church is the perfect plact to integrate and get involved with kids with special needs. Start by contacting your pastor or minister and asking if you can offer a brief workshop on disabilities and autism to him and her/his senior staff. Its important to educate the leaders on the numbers of kids that have autism and some of the obstacles they face. Don’t assume they know this. Most do not. Once they hear the startling statistics and have an appreciation of the issues, then present them with a plan to integrate Sunday school, the worship service, the choir, etc. This could mean hiring a behavioral specialist to work with and train the staff. It may mean asking teachers, parents and other trained professionals in the church to volunteer time helping out in Sunday school, modifying the lessons, etc. There are so many opportunities for the faith community to get involved and to partner with parents. As advocates, we have a unique opportunity to lead the charge. Keep us all posted and report back what I know will be success!
7:30
Comment From Andria

What precisely do you mean by “inclusion in the community”?

7:34
Andria, great question! Inclusion is the process of integrating kids with special needs into those activities, places, situations, etc where typical peers are. For example, an inclusion model of a community center would have kids with all types of disabilities and typically developing peers. They would have activities that created an opportunity for interaction rather than isolation. Games, activities, etc would be planned in a way that takes into accounts some of the sensory and other issues that kids with special needs have. The volume on movies could be lowerd to make watching more comfortable for kids who can’t tolerate loud noise. These are just a few examples. I bet you can think of lots of ways you can plan parties, sleepovers and other activities that all kids enjoy that will also take into account the needs of our special kids. 
7:34
Comment From Taylor

I work at a summer day camp and I have a kiddo with aspergers, and he often secludes himself from free play activities and won’t talk to anyone, counselors included. I have tried everything I can think of to include him. Any suggestions?

7:37
Taylor, great question. Often kids on the spectrum have a hard time making friends and joining in group activities. You can ask the parents what are some of the activities that their son likes and can use those activities as a way to get the child involved. The key is learning more about the child and what motivates him. Kids with autism often will have some preferred item or activity, like video games, or airplanes, and once you figure out what that is, it can be used to movtivate him to talk and to engage. It may take a little digging, but trust me, he has something that he loves and he just waiting for you to discover it!
7:38
Comment From Kay

How do you know if everything possible, or close to it, is being done for your child? Sometimes it seems like not enough progress is being made on his IEP.

7:43
Kay, every parent with a kid on the spectrum asks themselves this question everyday and sometimes 3 or 4 times a day. We work as hard as we can, and we still feel like its just not enough. The answer is you are doing enough and more! You have to be patient and recognize that a child with autism like all children grow and develop at their own pace. We may want to see them go from 1 sentence to 5 paragraphs in one semester, but we have to learn to accept that if they go from 1 sentence to 2, that is progress and it should be celebrated. You can always consult with outside professionals such as educational therapists and have your child assessed. These professionals can determine a baseline and use that as a way of measuring his progress over a school year or set time period. I always remind parents to look for the small and less obvious signs of progress as they can often bring more joy than the big things. I remember when my son Marty covered his mouth when he coughed! You would have thought I won the lottery–I was screaming and shouting so loudly! On this journey, we have to redefine success and progress and it has to be based on our own child’s gifts, and nothing else! 
7:44
Comment From Erin

My son is seen per his IEP by an occupational therapist in school but only for 30 minutes a week…can this really be helping him at all? What can I do as a lower middle class mother of two to find him another occupational therapist within our price range? Any state funded programs don’t seem to be designed for children on the spectrum so I feel like I have no other options.

7:50
Erin, you raise a very important issue–money! Therapies for kids with autism is very expensive. Some therapies are up to 200.00 an hour and may be recommend for 3 to 4 hours a week. Most working and middle class parents can hardly afford to pay for such expenses. So don’t feel bad–hardly any Americans can pay for thier own health insurance. As an advocate, you have to make the best of the resources you can marshall in your own community. Start by asking the school to assess him to determine if he would benefit from more than 30 minutes a week. If the school’s report is negative, you can always request an Independent Assessment that has to be funded by the school. If this assessment determines that more is needed, the school is likely to provide it. Next, check with your local county agencies. In some states, the county offers programs through its department of health that may be available at no or low cost. Also, United Healthcare Foundation has a program where they give grants to families for services. Go on their website and apply for a grant for the OT. Finally, you may consult your local universities or colleges. They may have graduate students who need to do a certain amount of hours before graduating. They may be able to provide the services for free or at a low cost. Good luck!
7:50
Comment From Angela

What are the top 3 things every parent (who has a child on the spectrum ) should know?

7:54
Angela, excellent question. The tope 3 things every parent with a child on the spectrum should know are: 
1. You are your childs’ best advocate. Never relinquish your role as expert on your child. 
2. Advocacy is a life long pursuit. Don’t burn yourself out in the first couple of years, your child will need you when he is a teen and an adult and you want to have something left to give. 
3. As best possible, fit your child with autism into your family’s life rather than rearranging your entire family around the child on the spectrum. Kids with autism need and do best in a family where there is love. In order to keep a family strong, all members need attention and support. So dont forget about your partner or spouse, your siblings, parents, extended family or friends. When everyone feels like they are a part, they will all pitch in and help the child on the spectrum. If they feel neglected, you are likely to have turmoil that will negatively impact you and your child on the spectrum’
7:55
Comment From Angela

Areva –Are you planning a book tour? If so, is Ohio one of your stops? Parents here need and want to hear your message

7:57
Angela, thanks for asking! I just finished a tour of the midwest when my book came out in paperback. So no immediate plans. Also, I was in Cleveland, Ohio on a tour when the hardcover came out last year. And finally, I am working on my next book–and its about so many of the issues that all families face in this ever changing world (cant give too many more details at this early stage). I look forward to touring with that book and will make a stop in Ohio as my best friend lives in Cleveland. Continue to follow me on Facebook for details. I hope to meet you the next time I am in the midwest! By the way, I am from St. Louis, so I am a midwesterner at heart!
8:03
Thanks so much to all of you that joined the chat today. I am so sorry that I couldn’t answer all of your questions. I was typing as fast as I could, but the questions kept flooding in.This just shows how engaged our community in and how important it is for groups like Autism Speaks to provide a vehicle for us to share. I am grateful to Autism Speaks for all that they do in the community to help families, to raise awareness and to advocate for legislation across the country that is helping our kids get health coverage. There is so much more to cover and maybe they will have me back again!In the ineterim, I want to leave all of you with this. Our need to advocate for our speical kids is as compelling today as is was 40 years ago before the passage of disability rights laws. By becoming advocates we all have an opportunity to play a vital part in the lives of our own children, but also in the lives of so many more. The work we are all doing is so important. We are indeed giving a voice to the most precious kids on the planet. Continue to stand up, continue to speak out, and continue to be the Everyday Advocates that you are!With hope,Areva

Autism in the News- 07.27.11

July 27, 2011 1 comment

Community Rallies to Break Eden Autism 5k and Fun Run Fundraising Record (Princeton, N.J.)
Eden Autism Services’ 8th annual Eden Autism 5k Race and 1-Mile Fun Run, sponsored by Munich Re, took place on July 17th and broke last year’s fundraising record with $125,000 in net proceeds. Read more.

Mother to run 13 miles inspired by autistic daughter (U.K.)
A mother whose daughter endured bullying due to autism is running a half marathon to raise money for other sufferers. Sophie Walker, 40, of Avondale Avenue, North Finchley, has been in training for the Royal Parks Half Marathon, which will see her do a circuit of major parks in central London. Read more.

Camp Brings Summer Fun To Autistic Children (San Marcos, Texas)
Frisbees soared and scooters skated across the Crockett Elementary School gym floor, but 8-year-old Sebastian Tamez chose not to take part in these activities. This was his second week at camp, and he knew what he wanted to do: go swimming. Read more.

Camp Jigsaw helps adolescents with autism spectrum disorders (Mississippi State, Miss.)
For adolescents with autism spectrum disorders, a new summer camp at Mississippi State combines fun activities with exercises designed to help participants overcome common communication and socialization effects. Read more.

Stand by autistic children, parents urge government (Bangladesh)
Parents living with autistic children have urged the government to stand by them with sustainable programmes for healthy growth of the victims as the ongoing international conference on autism came as a beacon light to the families concerned. Read more.

Voters: MARK YOUR CALENDARS

July 27, 2011 1 comment

Next Wednesday–August 3– marks a critical day in the federal government’s commitment to address the staggering rise in autism. That is the day Congress takes an important step to renew the Combating Autism Act of 2006. Unless Congress renews the law by September 30, this federal commitment in support of autism will disappear. The prospects for continued research, as well as promising new treatments, will be cast into disarray.

The U.S.Senate Committee on Health, Education, Labor and Pensions (HELP) will meet on August 3 to act on S.1094, the Combating Autism Reauthorization Act (CARA), which is sponsored by Senators Robert Menendez (D-NJ) and Michael Enzi (R-WY.) In very short order, 21 other Senators have signed on as co-sponsors of this bill, which enjoys wide support from both Republicans and Democrats. That’s the case as well in the House of Representatives, where a companion bill (HR.2005) has been introduced by Representatives Chris Smith (R-NJ) and Mike Doyle (D-PA.)

The August 3 Senate hearing is a critical early step in renewing the Combating Autism Act of 2006. The hearing will enable the 22 Senators who are members of the HELP committee to offer their input. This body must act on the bill in order to get it before the full Senate, important steps to getting it cleared by the House and sent to the President’s desk by September 30. Until the committee approves the bill, the full Senate will be unable to act.

The autism community is fortunate that nine members of the Senate HELP committee, including ranking member Senator Enzi, are sponsors of CARA. But sponsorship is not enough. These Senate members, along with 10 other committee members who voted for the original 2006 act, must demonstrate their support at the August 3 hearing for a strong continued federal role for autism research, treatment and services.

Since the 2006 act was approved with near-unanimous Congressional support and signed into law by then President George W. Bush, the prevalence of autism spectrum disorders (ASDs) has risen to 1 in 110 American children – including 1 in 70 boys. An estimated 1.5 million individuals in the U.S. are affected by autism, and government statistics suggest the prevalence rate is increasing 10-17 percent annually.

The CAA authorized nearly $1 billion of federal spending through 2011 on biomedical and treatment research on autism. It required the federal government to develop a strategic plan to expand and better coordinate the nation’s support for persons with autism and their families. Important research findings have resulted and critical studies are underway. Promising new interventions are making a difference in our children’s lives. For more CAA success stories, click here.

The 2006 law established autism as a national health priority and increased funding, leading to significant advances in our understanding of autism. But all of that progress could grind to a halt September 30 unless Congress sends President Obama a bill reauthorizing the Combating Autism Act. CARA would continue federal funding at current levels – that’s $693 million over the next three years dedicated exclusively for autism-related work by the National Institute of Health, the Centers for Disease Control and Prevention, and other federal agencies. The President already has promised to sign a reauthorization bill this year.

You can help. Visit our CARA Action Center where we will help you send a clear message to the members of the Senate HELP Committee. Sponsoring the bill is not enough—your Senators need to show up August 3 to carry the nation’s fight for answers to autism.

Wandering Common & Scary; Research & Guidance Needed

July 26, 2011 35 comments

The first major study on runaway behavior among children with autism confirms that it is both common and extremely stressful for families. Yet relatively few families are receiving professional help or guidance. These insights are among the preliminary results of the IAN Research Report: Elopement and Wandering, a project of the Kennedy Krieger Institute’s Interactive Autism Network (IAN) funded by Autism Speaks, the Autism Science Foundation, and the Autism Research Institute. For more, see our news report on the Autism Speaks Science page. And please leave us a comment about your experience.

Autism in the News – 07.26.11

Proposed charter school would help those with autism, cognitive disorders (The Gainesville Sun)
A 19-year-old in Jimmie Hackley’s group home can’t recite his ABCs despite being enrolled in county public schools, Hackley said. “That, to me, is absurd,” Hackley said. “He can’t count to 10, but he can learn.” Read more.

Ozzy Osbourne Buys $10,000 Rescue Dog for Sharon at Charity Event (Los Angeles, Calif.)
Rocker Ozzy Osbourne has a soft side which he demonstrated on Saturday in Los Angeles at the Design Care event hosted by the HollyRod Foundation. Ozzy saw his wife admiring a rescue dog, more specifically a Yorkshire terrier, which was being auctioned off to benefit Holly Robinson Peete’s foundation which focus on helping families cope with autism and Parkinson’s disease. Read more.

A New Twist On An Old Hobby (Highland Park Patch)
When I was a kid, I loved collecting baseball cards. Back then, my friends and I would stop by a little mom and pop candy store as we walked home from school to pick up a pack of cards. Read more.

Lose the Training Wheels bike camp starts (Charleston, S.C.)
The Down Syndrome Association of the Lowcountry(DSAL) is pleased to bring the Lose the Training Wheels (LTTW) bike camp back to the Lowcountry for the second time. Read more.

Staten Island mother battles for a cure for autism (Staten Island, N.Y.)
When a mother sees her child sick or in pain, her maternal instincts take over. She will do anything and everything in her power to heal whatever ails her offspring, no matter how enormous the sacrifices or logic-defying the path. Read more.

Categories: Autism in the News Tags: ,

How to Integrate Your Child in the Community

July 25, 2011 23 comments

Every family has concerns and questions about how to successfully include a family member with autism in their community. Martin, a parent of a child with autism, and an attorney will join us on July 26, 2011 Facebook Q and A to share her own experiences and answer questions about how to step up to community inclusion!

We want to take some of your preliminary questions now! Ask away!

News Coverage of Bangladesh Autism Conference

July 25, 2011 3 comments

Autism Speaks participated in the launch of GAPH-Bangladesh and co-hosted a conference — “Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia” — together with the Bangladesh government, the Centre for Neurodevelopment & Autism in Children (Bangabandhu Sheikh Mujib Medical University), the World Health Organization (WHO), and WHO’s South East Asian Regional Office (SEARO). Andy Shih, Ph.D., vice president of scientific affairs for Autism Speaks, provides more background in ‘Autism Speaks Goes to Bangladesh.’

Here is the official press release, International Conference Launches Revolutionary South Asia Autism Network.

Several news outlets provided coverage of the “Autism Spectrum Disorders and Developmental Disabilities in Bangladesh and South Asia” Conference. Here are some major headlines:

Sonia Gandhi for South Asian partnership on autism (The Hindu)
Congress Party president Sonia Gandhi on Monday praised Bangladesh’s “path breaking innovations” in micro-finance, education, women’s empowerment and public health as she underlined the need for a partnership in South Asia to provide affordable services to millions of autistic children. Read more.

Meeting on autism begins in Dhaka (BBC)
A two-day international conference on autism has begun in the Bangladeshi capital, Dhaka. Experts and policy makers from around the globe will focus on promoting awareness on autism in Bangladesh and other South Asian countries. Read more.

Recognise gifted kids as persons: Sonia (bdnews24.com)
The first-ever international conference on autism in the region has kicked off amid tight security and with high hopes of generating ‘greater awareness’ on the plight of the ‘gifted’ children. Read more.

Sri Lanka’s First Lady speaks at the autism conference in Bangladesh  (ColomboPage)
Sri Lanka’s First Lady Shiranthi Rajapaksa addressed the two-day international conference on autism that began today at Ruposhi Bangla Hotel in Dhaka to seek ways to enhance autism related services in Bangladesh as well as in the South Asian region. Read more.

Meet’ll promote autism cause, says Saima (bdnews24.com)
As Dhaka is ready to host the region’s first-ever international conference on autism on July 25 and 26, the child psychologist who envisaged the high-profile meet regards it as a ‘way forward for autism awareness’.  Read more.

Better care for autistic children (The Financial Express)
Autism is a disease specially noted in children that afflicts sufferers with varying degrees of mental impairment. Cases of autism are not uniformly the same. Some autistic children are seen to have reasonable intelligence to produce even average results in examination. But others are seen to be performing too poorly in academics from their mental handicaps. One similarity seen among autistic children in their varying degrees of mental capacities is the inability to communicate or form relationship with others. Read more.

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