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Posts Tagged ‘Office Hours’

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!!

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!

Family Services Office Hours – 09.15.11

September 15, 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. 

2:53
This month we are focusing on the important role grandparents play in the lives of their grandchild’s life with autism. In addition to weekly Office Hours we will focus on grandparent blogs, development of grandparent resources, and the launch of a Grandparent Support Tool Kit. We are interested in hearing from grandparents who can share their experience what it is like be involved in the lives of their grandchildren who have autism.
3:02
This month’s Community Connections will be focused on Grandparents! If you would like to subscribe, please click this link!
3:02
Comment From Kay

Good Afternoon!

3:02
Hey Kay!
3:02
Are you a grandparent?
3:02
Comment From Kay

Yes, I am…4 times!

3:03
how are things going?
3:03
Comment From Kay

One grandson, 9, lives with mild-to-moderate autism. I’m here to support others

3:04
That is great – thank you so much for joining our Office Hours
3:04
Comment From Kay

Well, it’s hard to say sometimes. It’s not like they come with a meter which tells you if they are being challenged in school to their capabilities or not

3:04
Comment From Kay

IEPs and their goals are a mystery to me. I wish i could attend school with Hunter sometimes, but that would be a huge distraction.

3:05
Kay have you checked our our Individualized Education Program (IEP) Guide? You may find this helpful.http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
3:06
Kay, you may want to consider attending an IEP meeting for Hunter if your son or daughter is okay with that. You are more than welcome!
3:07
That way you can learn more about his IEP and specific goals.
3:07
Comment From Kay

No but I will. I just try to do what I can to expose him to a variety of educational fun things to do, like go to the library, the science museum, etc.

3:08
Comment From Kay

She probably wouldn’t care, but her husband might. When I ask her, she isn’t even sure if they do ABA. She’s not terribly literate on the whole thing, really. I research more than she does.

3:10
Comment From Kay

The other night we went to McDonalds and passed a phone booth. He asked me what it was!! I had to try and explain that some people don’t have phones like Mommy and this is what they use, and the phone book is where you find people’s ph #s. I don’t even think he realized people have phone #s.

3:11
Comment From Kay

At times I get the feeling Hunter’s parents think he’ll just grow out of this…

3:11
That is great that you are teaching him life skills and how to act while out in the community. They are very valuable lesson
3:11
Comment From Ali

My grandchild was just diagnosed last week. Any tips?

3:12
Hi Ali! I know this must be a hard time for you but there are many resources and options available for families.
3:12
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.
3:13
This may be a confusing time for you family and it may take some time to figure out how you can be helpful. Grandparents do play a vital role in a grandchild and family’s life to be sure to stay involved and supportive!
3:15
Comment From Kay

All the great resources out there make everything less scary, Ali. Be sure to make use of them

3:16
Comment From Caroline

My daughter doesn’t want to face the diagnosis and it is very hard for me to just sit back and do nothing. HELP!

3:16
Comment From Ali

Thanks for the encouragement Kay! It is nice to know there are people out there willing to help.

3:16
It is so nice to see the community supporting each other!
3:18
Hi Caroline! I would encourage you to sit down with your child and discuss the approaches and methods that they have put in place. It is a good time for you to share what you have learned from reading articles or books that you have found helpful. Although it is difficult for you, it probably pays off for you to be patient and let your family grieve and take some time to accept the diagnosis.
3:18
Comment From Oma

I take care of my 5-year old grandson full time… He has high functioning Autism and just started KG. He is still adjusting and it’s taking lots of communication with his IEP team, but I know we will get there. I am getting lots of help and support from local professionals as well as a Parent Advocate, which helps so much, as I am on my own with my grandson. All the resources available from Autism Speaks are such a big help, too.

3:19
Hi Oma! Welcome back!
3:19
Comment From Kay

My daughter depends alot on me, but being older and having more patience has been a blessing.

3:19
Comment From Oma

I do have a question… We need to discuss safety at our next IEP on Friday, as my grandson bolts out of sight of his teacher. He’s a runner and it is scary to think he might run off fat and into danger. Do you have anything that could help at school as well as at home, measures we can take to keep him safe?

3:21
Oma, we have a great resource called the Autism Safety Project. There is a page just for families with tips and resources about how to keep children with autism safe and out of danger.
3:21
We also have a list of safety products in our Resource Library (along with MANY other resources!) that can help you as well.
3:22
Comment From Oma

Wonderful! Thank you!

3:22
Comment From Marcella

My 8 yr olf displays the characteristics of autism, but not diagnosised. where do i need to go?? help

3:22
Comment From Marcella

I’m convinced my son has high functioning autism. He is already in special ed, speedh therapy and occupational therapy in 2nd grade(started last year) all with me pushing the schools. does he need to be diagoned.

3:23
Marcella, we have a great section of our website called What Is Autism. There is lots of information on there and tips to help you learn the signs. We also have a great Autism Video Glossary that will show you the difference in real time!
3:23
Comment From Kay

Caroline, was your grandchild just diagnosed? It may just take time for your daughter to accept it. She may be grieving. She’ll get there.

3:23
Comment From Marcella

thanks

3:24
Comment From Debbie

Kay — same here. For some reason I find caring for my grandson easier than raising my kids. Go figure.

3:26
Marcella, you can also search our Resource Guide for service providers in your area that may be able to help your grandson. Try the category “Where to Get An Autism Diagnosis” or “Psychologists”. There are over 45,000 resources in there across the country!
3:27
Comment From Kay

It seems like for me, I have more of a big-picture view of my grandson than my daughter does. She’s dealing with him day-by-day and frustrated with his behavior and obsessions, but since I only see him 2-3 times/wk I don’t go so nuts and I appreciate his uniqueness more.

3:28
That is exactly why your role is very important! You are a great value to your daughter in giving support the way that you do. It is wonderful that you are able to be an active member in your grandchild’s life.
3:28
It is great that you offer you family a chance to get a break from the day to day challenges, even just a few hours can make a big difference for them!
3:29
Comment From Kay

So I guess it gives not only her a break for me to have him with me, he gets a break from her, too!!

3:31
There is a section in the Grandparent Toolkit coming out Friday, that describes how grandparents can support their grandchild and family
3:32
Comment From Guest

What do u think of a smaller school for autistic kids. My son is in 8th grade and his class has over 600 kids in the 8th grade. He has been diagnosed with pdd and some characteristics of aspergers

3:32
Comment From Lisa

I’m the one who just wrote about a small school

3:33
Hi Lisa! Wow! That’s a big 8th grade! Our School Community Tool Kit may be useful for you. Since every child is different, some children do better in small schools. It all depends on the child.
3:33
You can download the School Community Tool Kit for FREE!http://www.autismspeaks.org/family-services/tool-kits/school-community-tool-kit
3:33
Comment From Sharon

hello everyone… reading everyone’s comments makes me cry… i recently moved over 2000 miles away from my daughter and grandsons. The youngest is 4 and we are waiting for the offical diagnose that he is an aspie… my other grandson who is 10 also is special needs but not autism… I miss them both sooo very much and worry about my daughter now that i am not there to help her

3:34
We are sorry to hear you feel so frustrated being far from your family. However, there are plenty of ways you can continue to help them and stay close to them!
3:36
Technology is an extremely helpful tool. E-mail, chats and especially video chats are great ways to stay involved on a regular basis. Also, I’m sure like all kids your grandsons would love to get letters or treats from you too to know you are always thinking of them!
3:36
Comment From Kay

I look forward to that toolkit. Is there anything like waving in front of your kid’s face yelling, “He’s not just any kid. LEARN something about autism!!”

3:37
Comment From Sharon

i know but just miss the special times w/Mason (4yr old) and w/Alex …

3:37
Comment From Kay

OMG, I would be crying, too! Can you Skype or webchat with them? My grandson loves the computer!

3:40
Comment From Sharon

also i have been trying to find out if there is some place here in the Phnx AZ area that might lend out compression vest for short peroid of time. They are coming here in Oct for my son’s wedding and we will need one for Mason cuz his the ring bearer for the wedding… does anyone know of some org that must help out for a few days w/that?

3:41
Hi Sharon! We also have a great section in our Resource Library for Sensory Tools and Products including weighted blankets and vests. http://www.autismspeaks.org/family-services/resource-library/sensory-tools-products-0
3:41
Have you tried to get in touch with SARRC (Southwest Autism Research and Resource Center)? They are a wonderful organization in Phoenix that may have some other great ideas for you.
3:41
Comment From Caroline

Does anyone have any suggestions for activities I can do with my grandson? He will be 5 next month.

3:42
Hi Caroline! We have some great resources for you! The Grandparent Autism Network offers some useful and practical tips on making the most of the time you spend with your grandchild.www.ganinfo.org
3:43
It would be very important for you to discuss what activities you have had success with. Make sure to ask your children for suggested activities. It is a great place to start!
3:44
Comment From Sharon

Caroline… i found that my grandson loved just going for walks … feeding the ducks… nothing that takes alot of consentration…

3:45
Comment From Caroline

That is a great idea Sharon. I have been trying more exciting activities, but it sounds like walking and going to the park may be better activities for us to enjoy together.

3:46
Comment From Kay

In the fall he might like collecting leaves. Hunter likes to just go to the river and throw sticks and rocks.

3:46
Comment From Caroline

Wow, it is so great to hear ideas from all of you. It makes me feel so much less alone!

3:47
Comment From Kay

When he was 4 or 5 he loved swinging at the playground a LOT!

3:47
Comment From Kay

I take my grandson to the library; we go on birdwatching hikes, Caroline. Things like that. He likes to observe nature. Just kind of try things and see what works. Mostly he’ll like being with you!

3:48
You can connect with other people in the autism community by joining our social network! You can exchange more great ideas by clicking here! http://www.autismspeaks.org/about-us/social-networks
3:48
If you are seeking more support you can search our Resource Guide for groups in your area!http://www.autismspeaks.org/community/fsdb/search.php
3:50
We will continue our grandparent discussion at next week’s Office Hours so please invite other grandparents to join us. We know it makes a huge difference when people are able to connect and share experiences.
3:50
Also be sure to look our for our Topic of the Week!http://blog.autismspeaks.org/2011/09/14/totw-g2/
3:51
Comment From Sharon

nice meeting everyone and ty for the help

3:51
Comment From Kay

I let Hunter be messy too, where his mom doesn’t. We make recipes for playdough and slime and stuff.

3:52
That sounds like fun Kay!
3:54
Comment From Kay

Thanks for this chat

3:54
Your welcome! Thanks so much for joining! Hopefully we see you next Wednesday – Don’t forget to tell your friends to join!
3:56
Autism Speaks is here for you! You can always feel free to call our Autism Response Team at 888-AUTISM2 or email us at familyservices@autismspeaks.org. We are happy to answer your questions!
3:57
We send out different tips and tools each month, and our grandparents newsletter comes out this Friday! Stay tuned!

Family Services Office Hours – 09.08.11

September 9, 2011 2 comments

The Family Services Department at Autism Speaks now offers Office Hours!

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:

2:58
This month we are focusing on the important role grandparents play in the lives of their grandchild’s life with autism. In addition to weekly Office Hours we will focus on grandparent blogs, development of grandparent resources, and the launch of a Grandparent Support Tool Kit. We are interested in hearing from grandparents who can share their experience what it is like be involved in the lives of their grandchildren who have autism.
2:59
Comment From Jan Molesky

My grandson has autism and is also deaf. He is 10 years old and having some behavorial issues (slapping, unable to sit still) at school. I am not convinced that ABA therapy is the what we want to try. Is there some other therapy you might recommend?

3:00
Hi Jan!
3:00
You are absolutely right. If you are not seeing progress with one specific treatment it is important to look at other options and treatments where you have a better outcome.
3:01
Here is a link to different treatments – look to the column on the left! http://www.autismspeaks.org/what-autism/treatment
3:01
It is important to have data measures on treatments to know whether or not they are working
3:03
Comment From Jan Molesky

I have been heavily involved with my grandson since his birth and am his advocate. That means, I am the one his mom turns to when we need to find information, resources, funding, etc. It takes lots of time but it is one of the most rewarding experiences I have ever had. Thanks for the information. I just researched a little about the Son-Rise program last week and think that sounds like something I need to approach his mom about.

3:04
That is wonderful – good job! It is wonderful that you are advocating for your grandchild and families need all the support they can get
3:06
Comment From Jan Molesky

Is the Grandparent Support Tool Kit already available?

3:07
Not yet! It will be coming out on September 15th as part of Community Connections. You can subscribe to Community Connections here! http://www.autismspeaks.org/family-services/community-connections
3:07
Comment From christine

my son (4 1/2) just started back to school this week. he has an i.e.p. the school just informed me that the have no speech pathologist on staff. he NEEDS speech therapy and it is part of his i.e.p. what should i do?

3:08
Hi Christine! We are trying to keep with the grandparents theme, but we are more than happy to answer your question!
3:08
If speech services are a part of your son’s IEP the school district is required to contract for them
3:11
The Interactive Autism Network(IAN) conducted a survey of 2,600 grandparents of children with autism to learn how having a grandchild with autism changed their lives and how they supported the emotional and economic needs of their adult children and affected grandchild. Here is the link for more info:http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_apr_2010
3:12
This was an important survey because it told us a lot about how many grandparents are involved and the significant amount of time they are involved in their grandchild’s life
3:12
Comment From christine

thank you! sorry i went of topic

3:12
No worries! Glad we could help!
3:13
The Grandparents Autism Network offers some useful and practical tips on making the most of the time you spend with your grandchild with autism. Here is a link! http://ganinfo.org/
3:14
Comment From Pat

I’m the grandmother of a 3 year old boy that has been diagnosed with Autism this year. The only symptom I can see which would qualify him as being diagnosed with Autism is he’s slow in speaking. Would that still classify him as being Autistic?

3:15
Hi Pat – thanks for joining! I am sure it is very hard to hear that your grandson has been diagnosed with autism. Autism is a spectrum disorder and typically there are a number of different characteristics that lead to a diagnosis.
3:16
You can learn more about autism, the signs, symptoms, and diagnosis here http://www.autismspeaks.org/what-autism
3:16
Comment From Pat

Thank you very much.

3:17
As a grandparent you may grieve not only for your grandchild, but also for your adult child. It is important to recognize the ways your can support your family, but remember, you need some time to process all the emotions that you are going through.
3:20
Many grandparents wonder, ‘How can I support my adult child?’ A major concern of grandparents is that the well being of their adult sons and daughters who are parenting a child with autism. Because a child’s autism can lead to emotional, financial, and marital stress, grandparents frequently play a significant role in helping their families
3:22
Here are some ideas on how you can help”
-Reassure your adult children that you are available should they need you, and then allow them some time to come to you without any pressure.-With day-to-day responsibility of caring for their child with autism, they will appreciate an hour, an afternoon, or a day of free time to meet their own needs. As you might imagine, it is often difficult to find someone you trust to watch your child when he or she has special needs.
3:23
Comment From Nikki

Hi I am gramma to 2 boys both with autism 4 and 5 yrs old 5 yr old is pddnos and 4 yr old is an aspie, my question is how can I get through to school they say he is to smart for special ed but the arent looking at the whole picture

3:24
Hi Nikki, thanks for joining. Can you just clarify which grandson you are talking about?
3:24
Comment From Nikki

the 5 yr old and sorry I have sole custody of them

3:25
Each child should be evaluated by the school district to determine what their strengths and weaknesses are. Goals and objectives should be evaluated in the IEP.
3:26
Here is a link to our IEP Guide that will help outline the steps of the evaluation and IEP process.http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
3:27
Comment From Nikki

thats the whole issue, they wont do an IEP because he doesnt qualify for special ed services although he is listed as 504

3:28
If you really feel strongly that he is not getting the services he needs, you may want to contact an advocate that will help you with this process. It sounds like you really feel like he needs more than he is getting.
3:29
Here is a link to our Resource Guide. You can search by your state and find an advocate
3:29
Comment From Raquel

HI! I have a 4 year old girl who is a fraternal twin. Her sister is her best therapist. She was diagnosed at 3 with autism. It seems mild as she’s very interactive with us, just doesn’t really communicate verbally and has a hard time with crowds (social gatherings). Going to a party or out to dinner or a function is so hard, because she can’t sit still and just wants to run around. I actually cringe when I’m invited to something as I know it will be a marathon of running after our little sprinter. My insurance won’t cover ABA which was recommended any tips on curbing that behavior? We’re planning a Disney trip for December and I’m concerned on how we’re going to handle that.

3:30
Comment From Raquel

Sorry, I just realized this was a grandparent theme. so sorry for my long question :)

3:30
Hi Raquel! It is great that you are planning a special trip, but you are right, it is best to prepare!
3:30
We are big fans of Diary of a Mom. She has two daughters, one with autism. They just got back from Disney and you may find her posts helpful
3:32
Comment From Guest

Thank you so much, will be interesting to read her experience.

3:33
We just received this question via email and we would like to share!
3:33
“I just found out my grandson has been diagnosed with autism. I want to help as much as I can. What can I do to help my daughter’s family?”
3:35
Step back and take a deep breath! Your daughter’s family will need your support, but don’t forget to take some time to process your own feelings about the diagnosis. Before your daughter’s family knows what types of support they will need, they also may need some time to process. You and your daughter’s family will go through a range of emotions, including; sadness, shock, and anger.
3:37
There are many ways you can be of support, such as babysitting other grandchild, cooking dinner once a week, helping with the household shopping and other chores, all that you can do to help will make their life a bit easier during this challenging time.
3:38
Comment From Nikki

Are there agencies that deal with autism that have advocates to help? I mean he has been in school 2 wks and injured 4 times by another student

3:39
Nikki, you have to speak to the teacher directly and as soon as possible. If you don’t feel like this issue is being addressed than you have the right to call an IEP meeting. If this involves physical trauma or behavior, you want to do that right away!
3:39
Comment From theresa

My little girl was just diagnosed with Autism spectrum disorder .

3:40
Hi Theresa, we got your comments and today we are actually talking about grandparents. But since you came, we want to direct you to some of our valuable resources!
3:40
Check out our 100 Day Kit. 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.
3:41
You can download it for FREE here or request a copy to be mailed. http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:41
Comment From theresa

oh ok thank you this is my first time im sorry .

3:41
Don’t be sorry! We are happy to help!
3:43
Comment From theresa

Thank you so much i took down the # i will be getting that .

3:43
Great! Keep us posted and we are always here to help!
3:45
We just received another email question! “I have a hard connecting with my grandchild with autism. I want to have a relationship, but this behavior makes it difficult. What can I do to have a better connection?”
3:47
Many grandparents experience similar reactions. It can be difficult to build a relationship with a child as the very nature of the disorder complicates their social interactions. A child’s behavior may be off-putting and socially unacceptable which can lead to embarrassment. Be patient, and ask your adult children for support and help. Start out spending short periods of time in a structured activity that your grandchild enjoys. Get some success under your belt and go from there!
3:52
In honor of National Grandparent Day on September 11th the Family Services Team will continue to focus on grandparent role in the lives of their grandchildren with autism. We would love to hear from you! You can email us if you know of a good resource or have any questions at familyservices@autismspeaks.org
3:52
We would like to know if you have any resources because we are compiling grandparent resources to share with the larger community.
3:53
Here is a link to the National Grandparent Day
3:55
We would love to hear some suggested activities to do with your grandchild! Email them to us at familyservices@autismspeaks.org
3:56
As always, you can always get in touch with us! 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.
3:57
Comment From Valerie

My son has Aspergers and my dad comes from a different time…he just doesn’t understand. Do you have any suggestions? He loves him so much but always seems to be harsh because he doesn’t understand his behavior and thinks my son is just acting out.

3:57
Valerie you are not alone. We have heard from other parents as well about the interactions between their child and grandparent.
3:59
One of the ways is through education. Offer a book or article about autism that your father can read. He may want to observe your grandson in a classroom or therapy session to become more familiar with techniques used by professionals.
4:00
Here is a link to our Resource Guide that you may want to share with your father. http://www.autismspeaks.org/family-services/resource-library
4:01
Thanks to everyone for participating! We hope to see you all back here on WEDNESDAY, September 14 to continue to talk about grandparents and the role they have in the lives of their grandchildren!

Family Services Office Hours – 8/24/11

August 25, 2011 5 comments

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

12:58
Hello Everyone!
12:58
Comment From Melissa 

Excited for our chat today! Thank you~

12:58
We are so excited to be on this chat today. As we wrap up summer we can look back over the month of August as we discussed back to school!
1:00
Today we are going to go over some last minute strategies to transition to the new school year. We would like to introduce to you our new ‘Individualized Education Program (IEP): Summary, Process and Practical Tips’
1:00
It is a free, new online guide that provides parents with important and reliable information and advice about navigating the IEP process, created by a team of pro bono lawyers at Goodwin Procter.
1:01
You can download it for FREE here!http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:01
Another very variable resource we have comes from a LIVE Chat Gary Mayerson hosted, ‘How To Compromise With Your School District Without Compromising Your Child’
1:02
You can read the full transcript here!http://blog.autismspeaks.org/2011/08/18/transcript-gary-mayerson/
1:02
Comment From Deb 

Did anyone else send their child to school for the first time this year?

1:02
Hi Deb! Can you tell us a little bit about your child’s transition?
1:03
Comment From Deb 

He’s 4, and started pre-k this week.

1:03
How did things go?
1:03
Comment From Deb 

He’s doing well, but his anxiety is through the roof. Overall I’m pleased with his reaction

1:04
This is where transition planning comes in. It is great to prepare him by having routines or going over his day before he goes to school to alleviate some of his anxiety
1:06
Comment From Deb 

We did that, we’ve been getting ready for a couple of months. I just can’t seem to quite reach him to … smooth his feathers.

1:07
Keep trying and don’t give up! Communicate with his teacher- they may have some great ideas and teamwork is key!
1:07
Comment From Jenny 

Any good ways to handel anxiey over homework assignments? My son is in 8th grade and homework is so stressful to him.

1:07
Hi Jenny that is a very common concern.
1:09
Start with communicating with your son’s teacher about what the homework expectation is. I suggest you setup a special time each day to complete his assignments and work with the teacher to create a rewards system that will help him work through and complete his assignments. Remember, just like all other kids, your child is not any different… LOTS of children have trouble completing homework assignments. Ask family members and his teachers for some ideas how to best work through this issue
1:10
Paula Kluth has some wonderful resources that may help as well! Here is her page of ‘Readings’http://www.paulakluth.com/readings/
1:10
Comment From Arden 

We made my grandson, age 4, a book with pictures of his teachers and a story about the schedule of the day. He is in his 2nd year of pre-school throught the Special School District, and he likes going to school.

1:10
Arden that is wonderful! Great planning!
1:11
Kids with autism respond so well to predictability. We are always so glad to see a grandparent involved- keep up the good work!
1:12

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.
1:12
The School Community Tool Kit has some great tips and suggestions on classroom management for kids with ASD. Check out the ‘Appendix’ section!http://www.autismspeaks.org/family-services/tool-kits/school-community-tool-kit
1:13
Each section is broken up and you can download each section independently – for FREE!
1:14
Comment From Jenny 

does this explain the special education rights of the parents as well as those of the child?

1:15
Hi Jenny – the IEP Guide explains this, which can be downloaded here http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:15
You can also learn more about your child’s rights here!http://www.autismspeaks.org/what-autism/your-childs-rights
1:16
Comment From Jenny 

ok great because I always feel like the schools are not telling everything

1:16
One of the most important things as your role as a parent is to be an advocate. We have provided these resources so you can do your best in parent advocacy
1:17
Comment From Brenda 

My 7 year old son has Asperger’s. He’s entering 2nd grade. Although making progress in leaps and bounds with a great IEP and teachers and professionals, he is still very immature emotionally and tantrums in front of his friends. How can we help education not only his teachers, but his classmates on his condition. He still doesn’t understand himself.

1:18
Hi Brenda- It would be really helpful to look at the School Community Tool Kit in the Appendix section. There are a lot of great resources on how to talk to peers as well as teachers about ASD
1:19
You may also want to look at the Asperger Syndrome and High Functioning Autism Tool Kit. It goes more into the details of the diagnosis!
1:20
Comment From Jenny 

My son had a teacher that played a video about Autism designed for children for her class. it really helped the other kids with how they treat him in a positive way.

1:20
Nice going Jenny and kudos to the teacher who is thinking about the needs of ALL of her students!
1:21
Comment From Jenny 

it was her idea, she was a great teacher

1:23
We have heard some great feedback on the book – ‘Wrightslaw: All About IEPS’
1:23
You can also visit the website which is a wonderful resource for ALL parent advocates
1:24
Comment From Alexis 

My son is going to school for the first time and I’m worried because he doesnt speak yet

1:24
Hi Alexis – thanks so much for this question. How does your son communicate?
1:25
I am assuming that your child’s IEP has communication goals and objectives in it that outline the way in which your child communicates to teachers and peers. It is very important that it is well defined across all of his environments
1:25
In this case it would be important to have a speech therapist involved in your child’s IEP planning
1:26
Many parents have reported great success in using iPad technology as a way of communicating
1:27
The ‘Technology and Autism’ Community Connections is also a great resource http://www.autismspeaks.org/family-services/community-connections/technology-and-autism
1:28
*Many parents have reported great success in using iPad technology as a way of having their child communicate* To be more clear!
1:28
Comment From April Shumard 

Hello! My name is April. I just wanted to ask right quick, I know the IEP is done yearly, but is is done on the yearly annaversary of the last one or is there a specific month. I am forgetful!

1:29
Hi April! I know it can be hard to balance everything! So the IEP is done annually in the same month
1:29
Comment From Sandy 

My son is 9 & going into 4th grade. I’m concerned about his ability to focus on non-preferred tasks in class (i.e. math). We worked on his summer workbook yesterday & it took him at least 45 minutes to complete 10 problems . . . and that is with me right there with him to keep him on task. He can do the work, but is so distracted it takes forever.

1:30
Hi Sandy – I think it would be great to get some support from a behavior analyst who can work to create a behavior plan that will help your son complete his task in a timely manner.
1:31
I would recommend asking your son’s teaching to ask for a functional behavior assessment
1:31
During last week’s chat with Gary MAyerson, he defined what a Functional Behavior Assessment is.
An FBA identifies the target behaviors, tracks and measures the frequency, duration and antecedents of those behaviors, and then, finally, hypothesizes as to the likely function of the target behaviors…and you need to know what the function is before you can develop and design a proper behavior intervention plan
1:33
Comment From Sandy 

Thank you – I will pull up last week’s chat and check in with the people in charge of the IEP.

1:34
Your welcome! We have dedicated the month of August to back to school and we have lots of resources in our Family Services Section so PLEASE be sure to visit!
1:35
Comment From doreen 

my son got dxsd autism and autustic spectrum disorder does he qualify for social security benefits ??

1:35
Hi Doreen – It all depends on your state, but check with your State Developmental Disability Office. Social Security is a little tricky in that it depends on a family’s income, but your son may be entitled based on his disability
1:37
Comment From Arden 

I will be attending the IEP meeting next week. Any streategies that will help me get through the process?

1:37
First of all Arden, good luck!
1:37
It is great that you are thinking about what you can do to make the process more smoothly
1:37
If you look back at earlier posts in this Q & A there are great resources that you can review
1:38
We have a new Individualized Education Program (IEP): Summary, Process and Practical Tips, a free, new online guide that provides parents with important and reliable information and advice about navigating the IEP process, created by a team of pro bono lawyers at Goodwin Procter.
1:38
One thing to remember is to be positive and promote collaboration with your IEP team!
1:39
A positive attitude will go a long way in helping to get services for your child
1:40
Comment From Alexis 

Quick Question Is a child with a developmental disability such as autism entitled to a blue handicapped placard from the DMV

1:42
That is a good question Alexis! I think that depends on that state you are in and the eligibility requirements are listed on your state DMV page
1:42
Comment From Guest 

How do you get the school to participate in the use of the school tool kit?

1:44
Great question! We have had many parents who send the PDF to the Resource Specialist at their child’s school. BEWARE it is 250 pages and it can be expensive to print. Many schools may want to print one copy to keep in a binder to have to use for all of their students with autism
1:45
There is a section for staff training included in the kit
1:45
Great work promoting the Kit to your school! Great advocacy!
1:45
Comment From April Shumard 

Do I have to wait for the yearly IEP? Can I request sooner??

1:45
Absolutely!
1:46
Under IDEA anyone on the IEP can request an IEP
1:46
It is important to put that request in writing to make sure it is well documented and that the person who is responsible receives the document
1:47
If your school is not in compliance with your current IEP it is important that you go ahead and make a request for an IEP meeting
1:48
Comment From Bonnie 

My son was taken out of a regular school in grade 2 he should now be grade 5 level. They have had him in an environment where he is with children who have been banned from all schools here. He has been out of school now for near 2 months with me fighting tooth and nail to try to get him integrated into a regular school with no relief. I have tried through politicians, the autism network in my state education department complaints etc. Any suggestions ?

1:49
Hi Bonnie – you have obviously tried through many different avenues to advocate for your child. You may want to seek an attorney. If you visit the Resource Guide under your state, you can find a list of attorneys in your state.
1:50
It sounds like you have been through a lot and I wish you and your son the best
1:50
Some parents have to move mountains to get the right fit for your child.
1:51
You are doing a wonderful job of being a parent advocate
1:51
Comment From Teresa 

My grandson’s school told my daughter that even though she had an IEP from the end of this past school year that they would still have to evaluate him for 90 days to decide if they are going to impliment the recommendations from his last IEP. Why is it they just don’t go ahead and impliment that IEP while he is being evaluated?

1:52
Hi Teresa – you are absolutely right to question this!
1:52
Assessments should have been completed in the last IEP. I would recommend a new IEP meeting to discuss this issue
1:52
If something has changed or the school is questioning that needs to be discussed in an IEP meeting
1:53
Comment From Teresa 

how do we go about getting them to do this?

1:53
Requesting the IEP meeting through the Resource Specialist at your grandchild’s school is the way to go. Everyone team member has the right to do that
1:54
Comment From Teresa 

Am I able to attend this IEP meeting. My daughter knows nothing about autism.

1:54
ABSOLUTELY!
1:55
Parents have a right to bring support or another family member to an IEP meeting
1:56
Comment From Teresa 

we have been told by the school that I am not able to attend. I actually have three grandsons with autism two that are in school. THANK YOU SO MUCH. Won’t be shut out again. this is sure nice to know.

1:56
We would like to thank you all for visiting Office Hours this week. It is so great to see the autism community so involved and advocating for our kids with autism.
1:57
Please be sure to check out our new Individualized Education Program (IEP)http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
1:57
We are going to be skipping next week, but will be back on September 7 from 3-4pm EDT
1:58
We will be shifting our discussion to celebrate grandparents and their connection to their grandchildren with autism.
1:58
Please know that you can always contact 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.
1:59
Comment From Arden 

Thanks for all the info and links

1:59
Comment From Guest 

Thanks to you we have a better acknowledge about Autism !!

1:59
Comment From Jim 

thank-you for having this forum available to us

1:59
WE WISH YOU THE BEST OF LUCK! See you after Labor Day!

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.

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