Home > Family Services > Family Services Office Hours – 09.08.11

Family Services Office Hours – 09.08.11

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!
  1. Teresa
    September 9, 2011 at 11:49 am

    Would appreciate any any information on teenagers with autism. My son is 14years and still in ABA therapy, should he go back into school system?

  2. September 9, 2011 at 12:22 pm

    I am a Grandmother with MS.(diog.2002) I am also raising my Grandson 3 1/2yrs (diog 11/10) with Autisum.His Dad(my son) & him live here.His Bio. Mom has a daughter with ashburger autisum( different Dads ) She left in July of 2010, so now I’m MaMa & G-Ma,I got him into early intervention & staight in to PreSchool on his 3rd BD.He went from few word’s to many sentance’s…he has SP & OT 2-3 time’s aweek at school..AND we/I work at home as well.SO for the G-Parent’s & Parent’s who see this..don’t give up, fight for their/these special children, that GOD blessed us with.It’s not easy by any mean’s, but keep going for them and you..Thank’s Sandy

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