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Posts Tagged ‘Family Services Tool Kits’

Family Services Office Hours – 11.03.11

November 3, 2011 3 comments

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

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

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

Welcome to Office Hours! Thank you for joining us today. The Family Services team is here ready to answer your questions!
2:58
Comment From Francene

My son was recently diagnosed with Aspergers. How can I get him help and help our family cope, too? I feel like I have no one to talk to.

2:59
Hi Francene! Have you checked out our Asperger Syndrome/High-Functioning Autism Tool Kit? It is a free kit designed to help families understand more and cope after the diagnosis. It will help walk you through the steps following the diagnosis. http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit
3:00
You can order a personalized copy for free by calling our Autism Response Team at 888-AUTISM2.
3:00
We have tons of other helpful resources on the Family Services page of our website! www.autismspeaks.org/family-services
3:03
Comment From bernice

High functioning 8 yr old son os being physically abudive towards me and no one else…i am the one with him the most. Any advise or resources. Thanks

3:03
HI Bernice I am sorry to hear about your situation with your son. I would suggest you have him evaluated by a professional who understand Aspergers Syndrome. The ATN has developed a resource called the Medication decision Aid Tool Kit that may be helpful.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/tools-you-can-use
3:03
Comment From Lisa Gallegos

I was wondering if you have any homeless supportive services? We are being forced out of our home and have 18 days to come up with deposit money for the new place, but we have no where else to turn if we don’t get that money.

3:04
Hi Lisa. I’m sorry to hear about your situation. We have an Autism Cares grant program that helps families experiencing crises such as yours: http://www.autismcares.org/
3:04
We also have a page on our website for Families in Need:http://www.autismspeaks.org/family-services/resource-library/families-need
3:05
AutismCares Provides Grants for Individuals with Autism Spectrum Disorders During Times of Crisis or Unplanned Hardships. It is for families who have experienced a catastrophic life event in the past 90 days such as loss of a home, a job, death in the family, natural disaster, etc.
3:06
Hi Melissa, thanks for your question. Its very important that you work with your Pediatrician or other medical professional; a Developmental Predication or a Neurologist, so they can be informed and active members of your team.
3:06
Comment From Melissa

My daughter will be 3 in December and recieved an educational diagnosis of Autism in July. How important is a medical diagnosis at this time? She has increased behaviors when in strange situations so unless it would be extremely beneficial I would like to avoid situations that cause her extreme stress.

3:06
hi Melissa- sorry I answered your question before I published it.
3:08
Melissa- there is a great book I would recommend by Dr Ricki Robinson called Autism Solutions: How to create a healthy and meaningful Life for your child with
3:09
Comment From jennifer

I have two sons that have both just been diagnosised with ASD. Where can i find a book or something to give to the grandparents to help them understand what this is?

3:09
Hi Jennifer! We recently released a Grandparent Support Tool Kit called A Grandparent’s Guide to Autism.http://www.autismspeaks.org/sites/default/files/a_grandparents_guide_to_autism2.pdf. We also recently did a Community Connections piece celebrating Grandparents.http://www.autismspeaks.org/family-services/community-connections/celebrating-grandparents.
3:10
We come out with a Community Connections newsletter once a month that covers important topics for families. Sign up here!http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.5766483/k.3E56/Community_Connections_Sign_Up/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=5766483&en=deJCIJNpEcLEKKNuE9KAKPMzGhIIJPNmG6KMK2PEJsE
3:12
Comment From jennifer

My ot was talking to me about insurance for kids with ASD. do you know anything about this?

3:13
Hi Jennifer. Advocacy for insurance coverage for autism services is a huge part of the Autism Speaks mission. 29 states have mandated autism insurance coverage in recent years. Visit our advocacy page www.autismvotes.org for information about insurance in your state.
3:13
We also plan to release an Advocacy Tool Kit in the next month or so, so keep your eyes out for that!
3:13
Comment From Eva

any advice for a three year old who will not go to sleep at a good hour at night?

3:14
HI Eva
http://www.autismspeaks.org/family-services/health-and-wellness/sleep
Family services just recently published information on Autism and Sleep Disorders.
3:15
In addition, the Autism Treatment Network has published information on Sleep disorders and Autism.The link to their page is below.
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network
3:23
Comment From Guest

What do you do when you have 2 kids dx with ASD and live in a state covered under the mandate but our insurance has a $15000 deductible with $80 copays and ineligible for medicaid and cms bc of income. EI is scaping bottom of barrell to give services… what other options are there bc we are underinsured to get supplemental services for my babies?

3:23
Hi Guest – I suggest you check our our Familes In Need page in our Resource Library http://www.autismspeaks.org/family-services/resource-library/families-need
3:25
Early Intervention services “should ” be based on the child’s needs for services.
I would recommend getting assessments to help define your children’s needs.
3:25
You may also want to visit our Resource Guide and look up state information, or contact other Local Autism Organizations who may be better able to point you in the right direction in your state.www.autismspeaks.org/resource-guide
3:26
There is a state information category for EI age, Preschool Age, School age and Adults.
3:32
Comment From Guest

Florida has the most pathetic early intervention program and its reprehensible that they can even call themselves early intervention. I have had to pay out of pocket for independent evals and still receive minimal services (1hr per wk of a primary service provider) and 1hr every 6mon of face to face with secondary “consulting” provider. Its a joke.

3:34
hello- I’ve heard stories about many states who offer the minimum interventions. Have you tried working with an advocate. I realize they can be expensive, but sometimes it can make a huge difference in accessing more services.
3:34
You can find advocates in our Resource Guide atwww.autismspeaks.org/resource-guide.
3:35
I would also recommend a wonderful book called, The Everyday Advocate by Areva Martin.
3:36
You may also want to read our Community Connections on Advocacy at http://www.autismspeaks.org/family-services/community-connections/advocacy-can-make-all-difference
3:36
A law firm put together a great guide to legal information for families of children with autism, which you can see at that site as well.
3:38
Comment From Guest

I have contacted the state office in tallahasse all ready. My kids passed their BDI-2 assessment with flying colors and they refused to give diff eval. They are only giving services bc of their dx

3:38
Sounds like you are doing a great job of advocating! Keep up the good work.
3:40
I would also encourage you to sign -up for autismvotes eNewsletter. Our government relations team works with state and federal officials on increasing services for individuals with autism.
http://www.autismvotes.org/site/c.frKNI3PCImE/b.3909853/k.BE44/Home.htm
3:45
Our next Community Connections will be published on November17th, focusing on Safety and Autism, we will launch updates to the Autism Safety project WebPages and offer a new Safety in the Home Workbook and Video, this very practical resource was developed for families by Ohio State University faculty and funded by a Family Serves Community Grants.
http://events.autismspeaks.org/site/c.jqLTI1OxGlF/b.5766483/k.3E56/Community_Connections_Sign_Up/apps/ka/ct/contactus.asp?c=jqLTI1OxGlF&b=5766483&en=lgIJKONAJbLEKUNBI9IHLZMILjIMLVOuH8JQI8PMLuEWe will continue the theme of safety in our topic of the week discussions giving families the opportunity to share their successes stories with the community.
http://blog.autismspeaks.org/2011/11/01/totw-traffic-safety/In addition, we have 2 LIVE chats scheduled this month, one with expert Dennis Debault on How to Prepare for an Autism Emergency and the other with George Braddock who will chat about his work on Home Safety. We will promote both these live chats on Facebook, as we get closer to scheduled dates
3:48
Family Services completed the launch of the Family Support Tool Kits – targeted for the parents, siblings, grandparents, and friends of the child with autism.
www.autismspeaks.org/family-services/family-support-tool-kits
3:54
Comment From Guest

Joined on autismvotes on fb a couple mos ago. Will check out newsletter as well

3:54
Thank you all for joining us today! As always, feel free to call our Autism Response Team at 888-AUTISM2 or email us atfamilyservices@autismspeaks.org with any other questions you may have.
3:54
See you back here next week!!

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. 

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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!
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