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Posts Tagged ‘IEP Guide’

Family Services Office Hours – 10.12.11

October 13, 2011 3 comments

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.

2:43
Hi There! We are getting ready for Office Hours! Hang on!
2:59
Welcome to Office Hours! Family Services is taking questions and we are here to help offer resources and guidance!
3:00
Comment From Guest  

My son is in an EIBT program and is currently almost 3. Once he turns 3, the school district is wanting to terminate that program and place him in special ed. He’s currently in a reg preschool with a diagnosis of PDD. He definitely still needs an aid to intervene and redirect. The school district is telling me the funding isn’t there. Any suggestions on who to talk to?

3:02
Hello: Budget cuts across the nation are creating fear and apprehension, and there are real budgetary realities that school districts–all districts–must contend with. On the other hand, the district cannot simply provide services because because of budgetary concerns and if any IEP proposes to do so, again, “stay put” comes to the protection of the parents who have no choice but to move formally to protect their child’s program components
3:04
You may want to work with an advocate who can help guide you through this process. Check out our Resource Guide in the Family Services section at.
www.autismspeaks.org
3:04
Comment From shaun lavalley 

ive got a son with assbergers and never got any help dont know wear to go

3:04
Hi Shaun! You have come to the right place. We have an Asperger Syndrome and High Functioning Autism Tool Kit that would be a good place to start.http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:04
Families whose children have been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit or the AS/HFA Tool Kit by calling 888-AUTISM2 (888-288-4762) and speaking with an Autism Response Team Coordinator.
3:04
Comment From Guest 

my little girl is 4 an is in headstart she only get 30min of thearapy a week or thats what they tell me and i dont even know what therapy she has been going to school for the past year and hasnt made any progress

3:06
Particularly for children with autism who are often highly distractible, a 30 minute session is not adequate. You may need a private evaluation to measure this problem, and to make recommendations you can then present to the district
3:06
Hi Guest! You will need the school to do an assessment of her strengths and challenges. Based on that assessment you can develop an IEP. You need to get as much information as possible.
3:07
Comment From carla 

my son was recomended to have twice weekly speech, but the school will only give him one, they say its all he needs what can I do

3:08
Hi Carla – you have the right to do an independent evaluation and based on those results you can present that to the IEP Team.
3:09
If you feel differently than the school recommendation, it is best to get an independent evaluation. Parents have the right to recommend therapy and the amount of time the child gets for therapy.
3:09
Comment From melissa  

my little girl is 4 an has autism she is in headstart she only get 30min of thearapy a week or thats what they tell me and i dont even know what therapy she has been going to school for the past year and hasnt made any progress

3:09
Hi Melissa- We answered your question earlier. Do the info we gave help?
3:11
Comment From amy  

Our local school district won’t provide any services for my son because he reads above grade level, so his autism “does not have an educational impact”. He did not speak in sentences at school or write anything. I think that impacts his education, but they kept going back to the reading level.

3:14
Hello Amy – The IEP team members need to be in agreement on the services a child requires. If you feel additional services are needed, ask for an assessment that will give you information about the child’s limitations. Objective data measurements will spell out what services the child requires.
3:14
Comment From melissa 

my daughter is 4 an cant talk she is still in diapers an she is still on the bottle i dont think the school is helping her any what can i do

3:15
Hi Melissa – If your needs are not being met, you have to speak up for your child’s rights. Parents are a VITAL member of the IEP Team! You are your child’s best advocate. Your child is entitled to an education that is tailored to his or her special needs and a placement that will allow them to make educational progress. Here is a link that you may find to be helpful!http://www.autismspeaks.org/what-autism/your-childs-rights
3:17
Comment From Guest 

I have a year old son that attends an Early Interention school for 2 1/2 hours 3 times a week, and during that time they give him a 1/2 our of speech and 1/2 hour of O/T. They speak highly of him and say he is doing great but when I take him to a separate Speech therapy session, he will not cooperate at all screams and cries and hides under the tabe. They suggest I get him a TSS for therapy. I contacted someone they recommended and they sais they have very limited spots available and they are for kids who need 15+ hours or more of TSS services per week. I dont know what to do.

3:19
Hello- It sounds like a professional is making the recommendations for your daughter to receive more services. Ask the professional to put the request in writing, this may give you more leverage to get services faster.
3:19
Comment From Kaydell 

I keep hearing how iPads are making such a difference for some on the Autism Spectrum with the many apps. available. I truly feel that my kiddo would be one of the children that would benefit from this device considering his communication delay. It is a terrible feeling that due to the cost of the iPad I am unable to purchase a device that could make my son’s life easier. Do you know of any organizations that are offering iPads at discounted rates for families in need?

3:21
Hi Kaydell – You are right! iPads have benefited a large part of the autism community. We are thrilled to be giving away iPads in 2012, but you can also find other organizations that do as well. It is just at different times of the year, and you have to keep track! Some parents have negotiated with their school districts to get iPads for their children because they are considered a communication device.
3:22
We have a Community Connections ‘Technology and Autism’ that can give you more information!http://www.autismspeaks.org/family-services/community-connections/technology-and-autism
3:22
Comment From Heidi 

What kind of resources are there in the Pittsburgh PA area for transitioning a child to a new home environment? Any recommendations in making this as easy as possible for my 6 yr old Autistic? FAS grandson.

3:26
Hi Heidi-Sounds like your grandson is moving to a new home, yes, this will require some thought and a transitional plan. I would recruit your grandchild’s school and home team to put a plan in place, and one that can be implemented in different environments.
3:26
Here is our Resource Guide where you can search for services in your state! http://www.autismspeaks.org/resource-guide
3:26
Comment From rachel

was pic day at school, she hated it, first she had somewere els to go, then she saw th dredded line, then it was crouded, then she was made to sit and tri to be happy… ha the photagrapher thankfully was paciant and took 4 pics. or els she would of had a prfessinal pic of her with a angy face and a sock in the air.. lol just wanted to share, thanks for everything you guys r doing

3:26
Comment From Michelle

the communication device would fall under the IEP as assistive technology.

3:27
Hi Rachel! Sounds like a crazy day! Picture day isn’t easy for anyone! Thanks for joining us and your support!
3:27
yes, I have been hearing more and more about iPads being approved by districts. Its certainly worth a try.
3:27
Comment From marisa

My two year old was recently diagnosed with autism & he’s not speaking yet. Any tips/ books on communicating especially for potty training?

3:29
Hi Marisa – If your son was newly diagnosed the 100 Day Kit will be a helpful resource. It was created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism.http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:29
You may want to speak to your speech therapist about ways you can work on your child’s communication at home
3:31
As for potty training… that is a major challenge families with autism face. This book by Ashley Hickey, ‘Successful Potty Training,’ is also helpful.http://www.autismspeaks.org/resource/successful-potty-training
3:31
Our Science Team recently tackled this question and you can find what they came up with here!http://blog.autismspeaks.org/2011/09/23/has-anyone-studied-how-to-help-toilet-train-children-with-asd-2/
3:31
Comment From Michelle

I personally found that sign language can help give them a language until the speech therapist and your child can work on the verbal language. There are easy signs for bathroom, food etc that will help take some of the daily frustration away.

3:32
Comment From kevin

i am having an issue with my 10 yr old son, 5th grader in school.. he is a good student, but it something happens during the day that doesnt go his way, sh just shuts down and becomes defiant to teachers and the principal, he is diagnosed with Aspergers

3:33
hi Kevin, We have 2 resources you may want to check out. The first is the School Community Tool Kit
3:35
The Aspergers Syndrome/ High Functioning Autism Tool kit is also available online. The link is in the above post.
3:36
Comment From Guest

i will definetly look into this, but are there any programs that are in the monmouth county// ocean county area in NJ

3:37
Hi Guest! You can search our Resource Guide by your state!http://www.autismspeaks.org/resource-guide
3:41
Hello – Your questions are right on! We have a few resources that will help to answer your questions. You can access the the IEP guide at
http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
The other resource is the WrightsLaw website:http://www.wrightslaw.com/
3:42
Comment From Michelle

I feel for you kevin, my 13 yr old will do the same thing, but it has gotten better. He has improved, keep working with your son. Today he had a terrible meltdown, but it is his first one this school year. All the others have been slight refusals and then he finally did the work. So there is hope

3:42
Hi Tashalee – You are doing the right thing by having your child evaluated. The earlier your child get diagnosed the better. You can begin early intervention and it will make all the difference. He is our 100 Day Kit 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.
3:43
Comment From Tashalee

MY 2yr old goes for evaluation next week, we are preparing for what we already know, it all makes sense now. He does’t say much a few words, how do I help he and whats this about Ipads helping?

3:43
Comment From brenda

what do you tell fmaily whos not really been in your childs life for years then all of a sudden they pop in but dont want to do the tthings u suggest with your child?

3:46
Hi Brenda- The Autism Speaks Family Support Tool Kits: Parents, Siblings, Grandparents and Friends will be published this week in eSpeaks. The Guides cover the emotional reactions to having a family member with autism. The question you are asking is covered in the Parent’s Guide. Make sure you check out eSpeaks on Friday.
3:47
Comment From Tashalee

Thank you, its so wonderful to know that we are not alone.

3:47
Tashalee you can always come to us for support! Please check out our Blog: blog.autismspeaks.org and visit our Facebook Page: www.facebook.com/autismspeaks for more community!
3:48
Comment From Guest

We live in Spencer Iowa, and have 2 boys (8yrs and 13 yrs) on the spectrum. We have a couple support groups semi locally and they are helpful, but I am looking for someone that can help me advocate for my children. The support groups have a lot of advice but I don’t know if I am not asking for or requesting for help in the right way. I will admit I can get very wound up, and boisterous when I don’t feel like I am being listened to. I was hoping you can put me in touch with some on who can help me by telling me if I am unreasonable in my request, or possibly join our IEP meetings to back me.

3:50
Hi Guest! You are not being unreasonable at all in requesting to have an advocate in your IEP meeting. You can search our Resource Guide by your state to find an advocate in your area!http://www.autismspeaks.org/resource-guide
3:50
You can also check out our IEP Guide for further information:http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:51
Comment From Amy

We live in Spencer Iowa, and have 2 boys (8yrs and 13 yrs) on the spectrum. We have a couple support groups semi locally and they are helpful, but I am looking for someone that can help me advocate for my children. The support groups have a lot of advice but I don’t know if I am not asking for or requesting for help in the right way. I will admit I can get very wound up, and boisterous when I don’t feel like I am being listened to. I was hoping you can put me in touch with some on who can help me by telling me if I am unreasonable in my request, or possibly join our IEP meetings to back me. Thank you

3:55
We are so excited to welcome Jed Baker to chat with us on Friday! Jed Baker, Ph.D. is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems.
3:58
Well thanks to everyone who participated! Our hour has come to an end! You can always call the Autism Response Team (ART) members are specially trained to connect families with information, resources and opportunities.Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.
4:00
Have a great day!

Family Services Office Hours – 09.28.11

September 29, 2011 6 comments

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.

2:47
Welcome to Family Services Office Hours! We are here today to answer any questions you might have and help connect you to resources. Let us know how we can help!
2:55
Comment From Kelly

Hi, I have a 9 year old son that I believe has aspergers. His current official diagnosis is ADHD but he has so many other symptoms. Cincinnati Children’s assessed him several years ago and told us that he was bi-polar. I’d really like to know someplace that I can take him for a full eval. Can you help?

2:56
Hi Kelly! The Asperger Syndrome/High Functioning Autism Tool Kit will be helpful to you. It contains lots of helpful information and resources!
2:58
In addition, the Cincinnati Children’s Hospital is now an Autism Treatment Network site. Here is the contact information: Cincinnati Children’s Hospital Medical Center (Cincinnati, OH)
Contact: Terry Mitchell
Phone: (513) 636-1665
terry.mitchell@cchmc.edu
2:58
Comment From renaye

I am having a difficult time finding a speech therapist for my grandson who is nonverbal .. none of them take medicaid and there is a waiting list for the one that does.. what do I do.. He is 11 non verbal and we want him to use tap to talk or some assisted device

2:59
Hi Renaye! We have a very extensive resource guide on our website that contains lots of speech therapists. You may want to try contacting others in your area to see if they take Medicaid.http://www.autismspeaks.org/resource-guide
3:00
If you’re not having any luck through Medicaid, you should also ask the school district for your grandson to be evaluated for his speech and language needs which can be included in the IEP guide. Check it out here! http://www.autismspeaks.org/what-autism/your-childs-rights
3:01
Comment From Kimberly Rossi

Hello I was looking to find out where I can get information to help a friend of mine a 26 year old male with autism information about dating. He has a belief that “normal” girls won’t date him because he has autism. He says that he wants to date “normal” girls not those with autism. I’m not sure how to help him he refuses to go to any local mixers that happen in the area. Any suggestions?

3:02
Hi Kimberly! We also have a Resource Library with lots of general resources. We have 2 different pages you may want to check out, our Asperger Syndrome page, as well as our Adults and Young Adults page. There are tons of helpful resources there.
3:02
Comment From renaye

we live in indiana,,, northwest part of the state

3:03
Hi Renaye, I still thiink you will want to call Cincinnati Children’s Hospital Medical Center (Cincinnati, OH), and ask if they know of an expert in your local comunity.
3:04
For everyone else out there, we have lots of different resources in our Resource Library that cover a wide range of topics, like toys and games, autism apps, magazines, books and much much more!
3:07
Comment From Guest

I looking for feeding therapy in Illinois south of Springfield.

3:08
Hi Guest! Thanks for joining us. I suggest you search our Resource Guide. We have a category for Diet/Nutrition in there. If that doesn’t help you, I would contact your pediatrician, he or she may have some recommendations for you.http://www.autismspeaks.org/resource-guide
3:09
Be sure to consult with your pediatrician, this is a medical issue that requires a team approach.
3:09
Comment From Jack Dawson

Hi There! I was wondering when the Family Support Tool Kits are being released? Your Tool Kits have SAVED my family!

3:11
Jack we’re SO happy to hear our Tool Kits have been helpful to you! That’s what we’re here for!
3:12
Hi Jack- Family Services relased A Granparent’s Guide to Autism last week. We will release Parents, Sibllings and Freinds in the next few weeks.The Tool Kits are specially designed to help with the emotional and support reactions to having a child diagnosised with autism.
3:13
All of the Family Services Too kits can be found at;
http://www.autismspeaks.org/family-services 
3:13
Comment From meta kane

I need a school for my son who has autism. My son has a photographic memory.

3:17
Hi Meta: You can look in our Resource guide for Private Schools. If you are interested in public school, that is something you will have to work with your IEP team in making an determination of public schools that are available.
http://www.autismspeaks.org/resource-guide 
3:17
Comment From Dana

I’m wondering if there is a Dallas-area toolkit for the Dental community? Or if there is a group specializing in the ASD population? My stepdaughter has Asperger’s Syndrome.

3:17
Hi Dana! We have a great Dental Tool Kit on our website. It has information and helpful tips for families AND dentists. It also has helpful videos. You can see our Dental guide here:http://www.autismspeaks.org/family-services/tool-kits/dental-tool-kit.
3:18
We also have dentists in our Resource Guide that specialize in treating individuals with special needs including autism. Click on your state, then the category Dentists and you can search by your zip code. I hope you find a great one!www.autismspeaks.org/family-services/resource-guide
3:19
Comment From Mari

I live in California and my son is a Jr. in high school. He has not been able to pass the Ca exit exam. What happens next? We would love for him graduate with a diploma and not a certficate.

3:21
Hi Mari- I am going to recommend you request a Transition Tool Kit – a special kit for families whose child are transitioning into adulthood. http://www.autismspeaks.org/family-services 
As far as your son not passing the exit exam, I would recommend you call an IEP meeting in order to specifically address this issue. Our IEP guideline will be a great resource to check out. http://www.autismspeaks.org/family-services 
3:22
Comment From Jennifer

My 4 year old was diagnosed with Autism and is in a special needs pre-k. I”m trying to find help with the state laws that are associated with Special Needs Classes. Regarding class sizes, full days/ half days…ect…

3:22
Hi Jennifer! We have lots of information about eduation laws in our IEP Guide. You can read our IEP Guide that was written by a professional team of lawyers on our Your Child’s Rights page:http://www.autismspeaks.org/what-autism/your-childs-rights. You can also search our Resource Guide for other preschools in your area. www.autismspeaks.org/resource-guide
3:22
Comment From Dana

Your IEP guide is invaluable! We did our first IEP last week, and knew how to advocate for our daughter with Aspergers. Thanks to your site, we were able to include both speech therapy *and* counseling in her IEP, as well as ensuring her caregivers had Autism certifications.

3:23
Thanks Dana! I’m so happy that was helpful to you and your family. We have gotten some great feedback!
3:24
Comment From Mari

Do you anything about a waiver in Ca?

3:25
HI Mari, you can check with your Regional Center. They should be helpful about how to obtain a MediCal waiver. Its great that you are investigating a waiver while your son is making his transition to Adulthood.
3:25
Comment From Catherine Ritter

My family needs a good counselor for helping us cope with our eleven year olds AS/OCD. It has been extremely difficult dealing with the anxiety meltdowns that turn violent and destructive. He has a good pshychologist already. Our eight and four year are having a hard time with their brothers behaviors. It is really bad and we are looking into temporary placement outside of our home for him. It is hard to find doctors who can counsel in relations to the spectrum. Any suggestions?

3:27
Hi Catherine. I suggest you look to you discuss this with your pediatrician to see if he/she can make a referral to a counselor. You can also search our Resource Guide for psychologists/other professionals in your area who may be able to help.www.autismspeaks.org/family-services/resource-guide. It is important to make sure this counselor has experience with autism. But those are 2 great places to start!
3:28
Keep an eye out for a Sibling Tool Kit we are working on that will come out in October. We also have books for Siblings in our Resource Library which you can see here:http://www.autismspeaks.org/family-services/resource-library/books#siblings
3:30
For those of you making comments about issues at school or education-related problems, definitely check out our IEP guide here http://www.autismspeaks.org/family-services/community-connections/back-to-school
3:30
Parent involvement is very important in the IEP process and your child’s education. Make sure you advocate for your child’s rights even though the process may be difficult!
3:31
Comment From Thereasa

My 6yo daughter was recently diagnosed with Aspergers. Do you have information that is easy to explain to my family so they understand what that means? They tend to be rather anti psychobabble and will not accept this diagnosis.

3:32
Hi Thereasa! First off, I suggest you order our Asperger Syndrome/High-Functionig Autism Tool Kit, which we send out for free to families of recently diagnosed children.http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:33
We have family tool kits coming out, but it is normal for different family members to respond differently to the diagnosis. It can take some people longer than others to accept it. I suggest you point families to our website www.autismspeaks.org/what-autismfor information. We’ve suggested that better understanding can lead to more support for you and your family.
3:33
Comment From Catherine Ritter

Our pediatrician does not know of one. I already spoke with him last week. ?? I feel so overwhelmed and stressed, because my family is struggling.

3:34
Catherine, I am so sorry to hear you are struggling. Feel free to call our Autism Response Team at 888-AUTISM2 or email us at familyservices@autismspeaks.org so we can help you.
3:35
It may help you to connect with other parents either through support groups or your child’s school. We don’t want you to feel alone. Sharing your feelings with others going through similar times can be extremely helpful.
3:35
Comment From Mari

Thank you soo much for all the help! Have a Wonderful Day!

3:35
Thanks Mari, we are so happy to help! Hope to see you back next week!
3:36
Comment From Willmom

We have noticed that our 4 year old ASD son is becoming much more stubborn. He is melting down with every no any suggestions?

3:37
Hello Willmom – I am glad you are asking tis question. Its important to understand and have a plan of action when children are having new behaviors.
3:39
You will want to work with a professional, preferably a behavior analyst who is an expert on understating behavior
3:40
http://www.autismspeaks.org/resource-guide 
Our resource guide has a catogory called ABA, take a look!
3:41
Comment From michelle

when our son was that age willmom, we found previewing situations that would have no answers helped. such as we are going to the grocery and there will be things that I am going to say no to. you can get 1 thing, if you do not melt down. (of course all of this is in 4 yr old language) it helped some. didn’t get rid of all them..still had some store meltdowns

3:42
Thank you Michelle! It is so nice to see moms and other parents talking to each other and sharing stories. That is one of the best ways to get support, by sharing information with others who may be going through similar experiences. As many of you know, there are constant chats happening on our Facebook page and lots of parents have been able to connect and help each other!
3:43
Comment From Willmom

Also, our 4 year old son (ASD) is having a very hard time with potty training. Any suggestions?

3:43
Comment From Willmom

Thanks for suggestions

3:43
Comment From Willmom

Michelle, Thanks for reaching out!

3:44
Hi Willmom. There are 2 books that have been submitted to our Resource Library that have been helpful to families who are having difficulty with potty training. Here are the 2 links:
3:44
Comment From Jeni

Willmom – the Book Love and Logic help my family tremendously in dealing with my son’s tantrums when he was your son’s age. We also had a 1:1 ABA therapist that would go to the store with us and help guide me through the situation.

3:45
The Autism Treatment Network is working on a toilet training tool kit that they hope to have out soon. So keep checking back to our Family Services page for its release date!www.autismspeaks.org/family-services
3:47
Comment From Ashley

I was just wondering if there has been any link in genetic disorders and autism? I’m asking because I have two boys who have mutated “X” chromosomes, and as a result they have “symptoms of autism” they cannot say for sure that’s what it is, but that’s what everyone thinks it is. It was passed on to them through me (I have the exact same genetic make-up) and I am afraid my daughter will have to too (already had her tested, just waiting for the test results). Thanks for your time!

3:48
Hi Ashley! That is a great question, but I’m sure you would get a better answer from our Science team. You may want to check out Alycia Halladay’s live chat on siblings and genetics here:http://blog.autismspeaks.org/2011/08/16/increased-risk-live-chat/
3:49
Our science team would be happy to answer your questions atscienc@autismspeaks.org. They are very helpful!
3:50
or you can try research@autismspeaks.org for more specific research-related questions.
3:51
Comment From Gayle

My grandson lives in NC and has been diagnosed as being on the autism spectrum, adhd and I’m not sure of anything else. He takes medications that are costly and also sees a psychologist for dealing with anger issues. He is 7 years old and does well in school and most of his meltdowns are at home. His parents are separated and my daughter is the sole source of financial support. Are you aware of any no- or low-cost services in NC to assist with his medical costs? My daughter has health insurance but the psychologist specializing in children with autism is out of network and the insurance pays very little. My daughter has to pay more than $135/week for the therapy session and his meds are not in the range of what she can afford. Thank you for any assistance you can provide.

3:53
Hi Gayle: You are correct to investigate financial recourses for families. Is your grandson receiving a Home and Community Based waiver? If not, this is the first step you want to take.
3:55
There are so many stressors that family’s face, and financial issues are one of the primary ones that we see in families of children with special needs. There are potential sources of aid…. many of them depend on the state in which you’re living. Many of the services in some of the states are provided for through state agencies.
Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. So my recommendation is to mine the services available in your community for funding, and don’t forget about medical insurance. Through medical insurance if you have a willing physician, you can sometimes get funded for ancillary services that might be covered by your own insurance policy, or through Medicaid, especially if your child has other medical diagnoses such as seizures, GI problems, or special dietary needs. Once you know where all your sources of funding might be, then take a critical look at your treatment plan that is required for your child, and see how each element might be covered by each of these resources to put together the most robust treatment plan for your child possible.
3:56
Comment From Guest

hi, i have an 8 year old boy, who has asd and adhd. We have just had our 6 year old duaghter accepted to be screened for autism. shes very intellegent and we feel shows signs of adhd and ocd too. she saves up all her anger, and behaviours for us at home, and we are told, does as she is asked in school! soo frustrating! ive read alot about high functioning girls disgusing their behaviours etc in school, then letting all come out at home.

3:58
Hi guest! This is a very common problem reported by parents. We recommend that there by close communication between you and the teacher so you can learn about what the school is doing to get the success they have. Communication is everything when trying to raise a child who may have autism. Remember, this won’t be easy because the school environment is so structured, but it does help to have this information so you can learn from their success.
3:58
These issues should also be brought up in the IEP team meeting. The teachers/school professionals should have lots of information for you. It is great when teachers and parents are on the same page.
3:59
Thank you everyone for joining us today!! We weren’t able to answer everyone’s questions but I hope all of the participants learned a lot from the questions that we did answer. As always, feel free to call our ART team with questions at 888-AUTISM2. See you next week!!

LIVE Q & A Transcript with Co-Founder Suzanne Wright

September 22, 2011 3 comments

Suzanne and Bob Wright are co-founders of Autism Speaks, the world’s largest autism science and advocacy organization. Inspired by the challenges facing their grandson, who suffers from autism, they launched the foundation in February 2005.

Suzanne has an extensive history of active involvement in community and philanthropic endeavors, mostly directed toward helping children. She is a Trustee Emeritus of Sarah Lawrence College, her alma mater. Suzanne has received numerous awards, the Women of Distinction Award from Palm Beach Atlantic University, the CHILD Magazine Children’s Champions Award, Luella Bennack Volunteer Award, Spirit of Achievement award by the Albert Einstein College of Medicine’s National Women’s Division and The Women of Vision Award from the Weizmann Institute of Science.

In 2008, Suzanne and Bob were named in Time 100’s Heroes and Pioneers category, for their commitment to global autism advocacy. They have also received the first ever Double Helix Award for Corporate Leadership from Cold Spring Harbor Laboratory, the NYU Child Advocacy Award, the Castle Connolly National Health Leadership Award and the American Ireland Fund Humanitarian Award. In the past couple of years the Wrights have received honorary doctorate degrees from St. John’s University, St. Joseph’s University and UMass Medical School – they delivered respective commencement addresses at the first two of these schools. The Wrights are the first married couple to be bestowed such an honor in St. John’s history.

The Wrights have three children and five grandchildren.

Click here to read A Grandparent’s Guide to Autism.

12:59
Hi – I’m Suzanne Wright – Co-founder of Autism Speaks and I’m so happy to be joining this web chat today!
1:00
Comment From James McDonald

Good Afternoon

1:00
Comment From sha

thankyou for your time

1:00
Comment From Lucas mom

hi

1:01
I’m here today as Christian’s grandmother – and I’d like to talk about my role as a grandparent and advocate.
1:01
Comment From donna

Good Afternoon all

1:02
We are so excited about our new toolkit which is a grandparent’s guide to autism which can be downloaded for free on our autismspeaks.org website.
1:03
Comment From Emily

Hi Suzanne, I have a brother with Autism and just want to say thank you for your time you put into Autism Speaks.

1:04
Hi Emily.  Thanks for your kind words – I do this for Christian and for all families and individuals affected by autism.  Thanks for joining our discussion today.
1:06
Comment From Lalania Lind

I have a question. Did your family find it hard to get help from the education system for Christian?

1:09
Hi Lalania – very much so. Here is a guide that we provide from autism speaks – a School Community Tool Kit which can give you some advice – and an our IEP – Individual Education Program toolguide – which provides process and practical tips to knowing your child’s rights.
1:09
Comment From Carol

Hello Suzanne! Thank you for coming on to talk with us grandparents today. I was wondering what activities you like to do with Christian.

1:11
Hi Carol! We love to swim with Christian… he loves to go to the playground, he loves to go to the beach and swim in the waves, and he just made a beautiful little necklace for me so we’re starting on some arts and crafts these days.
1:11
Comment From Melissa

My son’s grandmother is a great advocate for our son. He’s now 8 and enrolled in a private Christian school here in Atlanta after spending 3 years in an intensive program at Emory University. I could talk to you all day about all the things she’s done for him and for us. Thank you to Autism Speaks for first jumpstarting our family into seeking treatment for our son back in 2005.

1:13
Melissa, hi. You have a wonderful mom. Speaking as a mom I knew from the get go just how important it was to be there not only for my grandson, but for his parents as well. We are glad that Autism Speaks was able to help your family at a very sensitive and critical time.
1:13
Comment From Sally

How do I share my time with my other grandchildren?

1:15
Hi Sally. This is VERY important. Not only for the sibling of the child affected but for the little cousins too. We as a family take turns with Christian when we are all together so I can spend some time with his brother and cousins. I must say that they are beginning to understand what autism is, and I do spend time trying to explain why special needs.
1:15
Comment From Annie

This Halloween we will trick or treat for Autism Speaks and ask for donations in lieu of candy! My 3 yr old son, Jamey doesn’t like candy, but he is autistic and that’s how I came up with this idea.

1:16
Hi Annie – We LOVE your idea and we’ll be posting it on our website!! I love the fact that you found a way to celebrate Halloween in your own special way.
1:16
Comment From patricia chabra

I am PAtricia Chabra,I have two son with ASD disorder,I have been doing autism walk for years,advocating for children and adults affected,you are such a mentor and inspirational person suzanne,god bless you

1:17
Hi Patricia – even though it’s not possible for me to be at every walk I am always there in spirit. I’m glad to be connecting with you now here – thank you for all your kind words and God Bless you too.
1:19
Comment From Donna McCombs

First, Thank you for giving your time to us for this chat. How can I teach my daughter’s grandparents to be more understanding about her disorder?

1:21
Hi Donna – our new Grandparent Tool Kit addresses this very issue. It will absolutely give you pointers on how to interact with the other set of grandparents who may be as supportive as your own parents. I really hope this helps – I know how difficult it is.
1:21
Comment From Stephanie

I have a grandson named Jaylin and we have been trying to find him weighted blanket he gets to hot if we put the ones he want but wont sleep without them so we was told about the blanket just cant find them.

1:22
Hi Stephanie – we have a list of sensory products on our website.
1:22
Comment From mark

hi Suzanne!:) im mark from the philippines. i’m glad about organizations such as Autism Speaks and really appreciate the facebook account. I have a brother with autism; just wondering, Whats the latest research in autism, such as its cause or new teaching methods given to autistic children?

1:24
Hi Mark! I’ll give you a link to our science which contains the most up to date and cutting edge science news. On another note we have our Light It Up Blue campaign which runs worldwide during the month of April. Can you help me light up some buildings in the Philippines blue?? We want to light up the world!
1:24
Mark – I hope your brother is doing ok.
1:25
Comment From Melanie Hobbs

Hi Suzanne and other parents/grandparents! LOVE Autism Speaks and the Light it up Blue campaign. One thing I’d love to see is resources and ideas for grandparents for toys/gifts. My son is 9 and there are tons of “autism toy” ideas for younger kids, but I would love to find more ideas for older kids. When it comes to birthday time, Grant’s grandparents are always at a loss (and sometimes I am too!). :)

1:26
Hi Melanie! First, thanks for helping us to Light It Up Blue! We actually have a Toys R Us online guide which was specifically created for differently-abled kids.
1:27
Comment From Melissa

It was actually the Autism Speaks series on NBC back in February 2005 that made us realize what we had been dealing with for 18 months despite protests from our pediatrician to the contrary. Our son was then diagnosed with classic autism that April. He’s now mainstreamed with no educational supports, is on the A honor roll, and has become a bit of a musical prodigy much to our delight. We just recently told him about his autism and he’s still wrapping his head around it. We are finding his classmates are beginning to notice his social and behavioral differences and wondered if AS had any suggestions on how to explain what autism is to young non-sibling children.

1:30
Hi Melissa – great question. There’s portion of our School Community Tool Kit devoted to peers. I’m so happy that you were able to see our Autism Speaks series on NBC. In Feb. 2005 no one was talking about autism – now we have our country but the world talking about it. If you are not familiar with our Light it Up Blue campaign I’d love to have your help to shine a light on autism.
1:31
Comment From Sally

At this point in my life it is too hard for me to talk “live” with other grandparents. Are there any Grandparent support chat rooms?

1:33
Hi Sally. We would love for you to check out the grandparent autism network – which provides support and resources for grandparents.
1:33
Comment From Guest

Hi I’m Flo from Germany. I am an SLP who has worked with autism fro many years. It is so encouraging to be able to use the web to support families affected by ASD.

1:35
Hi Flo. Yes it is very encouraging – what would we do with the internet. Please be sure to connect with us on all of our social networks. And also – help us light Germany up blue!
1:37
I need grandparents!! I feel we should have the support of the AARP with the numbers being what they are; 1 in 70 boys and 1 in 110 children. Thousands of grandparents without question are affected by autism. Here is a link to the President of the AARP: the Board.
http://pubs.aarp.org/aarpannualreport/servicesincar2010?folio=18#pg18Please ask them to help Autism Speaks and our grandparent community to raise awareness about the issues that affect our children and grandchildren with autism by making our grandparent tool kit(http://www.autismspeaks.org/sites/default/files/a_grandparents_guide_to_autism.pdf) available on their website and feature an article on autism in their AARP Magazine during the month of April, Autism Awareness Month.
1:40
It’s so important that the AARP join Autism Speaks – because autism affects everyone – the child, the parents, the siblings, the friends, the teachers, and the Grandparents – who often become the child’s emotional rock.
1:43
Comment From Lania

But how do you get a grandparent to come out of denial? We have been trying for years to help our daughters grandparent that she has autism, but she just will not believe us or the doctors.

1:44
Hi Lania – you know, everyone deals with the diagnosis differently, and I certainly feel for your situation. We have a 100 Day Kit which helps families through the newly diagnosed period. As part of the 100 Day Kit – we have a “Learn the Signs” section describes the hallmark signs of autism in detail. So maybe presenting this information to your daughter’s grandparent will help them understand the diagnosis of autism better.
1:46
Comment From Donna McCombs

Our grandparents on both sides say that if she had more discipline she would not have any behavior issues.

1:46
Donna – the misconception is that aspects of autism is about lack of discipline. This is not the case. Please go to our Learn the Signs and our Grandparent tool kit – I really hope this helps.
1:48
You can learn the signs here! http://www.autismspeaks.org/what-autism/learn-signs
1:52
It has been such a wonderful experience chatting with so many of you today. I really hope that our Autism Speaks website offers you the resources that you need as you navigate through the complexity of living with autism. Know that we are here for you and appreciate all your support. The more people who know about autism will be more willing to help ALL families everywhere. And we can raise the global consciousness by lighting up the world blue in April. Thank for the opportunity to chat with all of you today. Happy Autumn Day. Suzanne Wright
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