Share your expertise: what autism services do you need?

Here at Easter Seals Southeast Wisconsin, we are beginning a discussion on new programs we can offer to families living with Autism. Right now we deliver therapy services as part of the P.L.A.Y. (Play and Language for Autistic Youngsters) Project and offer a chance for siblings of individuals with disabilities to talk about their feelings in “Sibshops.”

We started both these programs after hearing from members of the autism community about the services they felt they needed. Now we are considering what more we can do as a provider. Should we begin an ABA program? Develop new respite options for families and children with Autism? Maybe develop specialized pre-school programs for children with Autism? Maybe work training programs for young adults with Autism? How about developing outreach efforts so people understand what life with Autism is like?

We wrestle with some issues, too. Should children with Autism be with their typically-developing peers or should we provide specialized programs like a pre-school program? I am asking you, our friends in the Easter Seals blogosphere, to give us some feedback — we would love to hear from you. If you have a child with autism, what services does your family need and want? If you are an adult with Autism, are there services you need? Do you have a model you might suggest to us that has worked for your family? Your ideas will be invaluable in our plan to expand our services.


 

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  1. Beth Finke Says:

    Jill,
    Thanks for your input, . Parents have many questions about appropriate services and supports. I encourage you to contact our information and referral resource here at Easter Seals. Information about Easter Seals services and other resources that may be available in your community will be provided. You can reach them by completing the contact us form here: http://www.easterseals.com/site/PageServer?pagename=ntl_contactus or by phone 800.221.6827.

    You may also be interested in learning about the array of evidence-based services that may be appropriate for your daughter on the National Professional Development Center on Autism web site: http://autismpdc.fpg.unc.edu/

    daughter at the National Professional Development Center on Autism web site: http://autismpdc.fpg.unc.edu/


  2. Jyl Says:

    My daughter is 14 and Autistic. Her doctor and I both see the need for Speech, PT, and OT. The “therapy” from her school is good for nothing and I can’t find a service that will come to the house or daycare. It would be great if the After School Centers had a therapy option available, especially in OT & PT.


  3. BELINDA LEE Says:

    I need a school he has been abused in RUSD. Please help w/ advise.


  4. Bob Says:

    Jane,

    What is the biggest shortcoming in people’s understanding of Autism? What are the problems staff have?

    The Autism Society has a great online beginners course in Autism you can link to: http://www.autism-society.org/site/PageServer?pagename=about_course


  5. jane Says:

    My son is 33 and has autism. I see a big gap in autism awareness training for agencies that serve this population in Milwaukee County. There are workshops offered, but it is not mandatory, and I believe many do not attend. I, as parent and advocate, must serve as primary trainer of staff and the person who must resolve problems. What will happen when I am no longer able to serve in this capacity?


  6. jen Says:

    I would like to see a school or center with an ABA direction. Also provide training for area schools on how to deal with autism in the classroom. The home therapy program is great but is difficult for single and working parents so a center would help children get services.


  7. Bob Says:

    Maureen,

    Locally we partner with Stepping Stone Child Development Centers. They have two location at our 53rd and Burleigh location and in New Berlin. They have an inclusive model. If you still need a quality daycare provider see our website at http://www.eastersealswise.com.

    Hope that can help you and your daughter.


  8. Patricia Wright Says:

    Andrea,
    Many adutls with Aspergers or an autism spectrum disorder are diagnosed later in life. It can be difficult for individuals to accept a label. I think it is most important for individuals to receive the support they need regardless of the label that they might/might not be carrying. You and your husband may be able to learn how to get Chris the appropriate supports even without a diagnosis.

    If you and your husband are interested in learning from individuals who have Aspergers you can look to the following links:
    Online Asperber Information and Support (http://www.udel.edu/bkirby/asperger/)
    The Global and Regional Aspgerger Syndrome Partnership

    Both of these links inlcude many resources and personal stories submitted by individuals with Aspergers. Individuals on these sites may also have some insight on how to best approach your husband’s son.


  9. Patricia Wright Says:

    Dear Maureen,

    Childcare is a significant need for children with disabilities. This month the professional journal Pediatrics published the results of a study that echoes your stated need (http://www.ncbi.nlm.nih.gov/pubmed/18595965). Easter Seals regularly hears reports about the need for quality childcare. In an attempt to address this need Easter Seals has close to 80 child development centers that provide quality INCLUSIVE childcare (http://www.easterseals.com/site/PageServer?pagename=ntl_inclusive_child_care&s_esLocation=serv_icc_) We know that our 80 centers are a drop in the bucket for the actual need. Many families need childcare, but when you have a child with a disability it makes the search for childcare even more difficult.


  10. Maureen Says:

    I found this year that it was very difficult to find a quality day care provider for my high functioning autistic daughter. We need more daycare providers for disabled and autistic providers. Like I mentioned my daughter is high functioned but they didnt want to except her. I had to finely take her to four different places. I am a single mom of two special needs children and I have very understanding boss (female) that she understood and let me take the time to get my daughter when the day care providers called and asked me to come and get my daughter.


  11. Cindy Says:

    I live in Milwaukee County. Single mom of 11 yr old son with ADHD, Aspergers & Non-verbal LD. Need Respite care from time to time. Recently found Badger Camp in Prarie du Chien–west of Madison for Aspie kids with a 2 to 1 ratio. Just wish there was something closer to Milwaukee. Hard to believe we don’t have something here for overnights. It would be nice for respite care. Or, is there something and I just can’t find it?
    This all became an issue for me because I need to go out of town for work for 4 days and I can’t leave him with family–he’s just too much for anyone to handle.


  12. Kathy Says:

    We live in Wheatland (Burlington area) and there is a real need for Social Therapies for children with high functioning Autistic/Asperger. This are somethings the school is trying to do but is very limited. Our pre-teen son so much wants to be “normal” but has a hard time understanding social skills and norms.

    Our area is also “off the map” as far as where activities & meetings are held. I need to travel 45+ minutes in order to attend anything. We use to live in the Chicago area where services were much closer and easier to find.


  13. Bob Says:

    Andrea,

    I have contacted our local Autism Society chapter. I am sure they offer support groups for parents coming to understand Autism and its effects on their children. If we can help in any other way, feel free to contact us at the phone number 414-449-4444.


  14. Andrea Norton Says:

    My husband’s son is 37. The son has not been officially diagnosed with Asperberger but from all I understand he probably is autistic and has been all of his life. He has been living on his own in NY since he was 17 years old. He can’t keep a job and hasn’t worked for about 10 years. My husband supports him. I am interested in several things. Is there a support group for my husband who is just coming out of denial about his son’s condition? How do we approach Chris (that is the son) about his condition? Chris rebels at any mention of any disability – having been improperly diagnosed for so many years. Any help would be greatly appreciated. Thank you. Andrea


  15. Tracey Jones Says:

    Hi Bob, there are three things that I’d like to suggest/mention.

    First, I would like to see more opportunities for pre-teen girls.

    Second, I would like to see services, especially social skills group therapy, for high functioning children. Both of my son and my daughter are on the Spectrum. They need group programs to help with their deficits. However, in the few groups they have attended, they are functioning at a much higher level in terms of behavior, expressive and receptive language (and sometimes intellectual ability). As a Special Ed teacher, I know that the programs were excellent but they just weren’t optimal for our children.

    Third, we moved here from Pennsylvania. In Pennsylvania every child with a disability qualifies for Medical Assistance! I think that might be one reason why higher functioning children receive more attention and services. There is simply more funding. We had “Wrap Around Services” – four hours of in-home therapy and three hours of behavioral specialist services per week paid completely by the state. This was more than enough hours to significantly help our older child.


  16. Patricia Wright Says:

    Dear Lillian – Autism Speaks has a great resource for newly diagnosed families. The First 100 Days Kit is designed to help families through that immediate period after diagnosis. It is available at no cost. Information can be found at the following link: http://www.autismspeaks.org/community/family_services/100_day_kit.php


  17. Bob Says:

    Lillian,

    Please contact our offices at 414-449-4444. Ask for Carrie, Early Invention Services Director, we can talk about how we can get you some answers.


  18. Lillian Says:

    i need help i just had my three year old twins diagnosed with autism and i know nothing about it and they tend to take off alot so i have my house in lockdown too but need to know what else i can do one bites and one hits
    i just need some advise


  19. julie Says:

    In-home respite, including services for older children and adults. Services seem to drop off as our children age, and the need is just as great, if not greater.


  20. Bob Says:

    Our Easter Seals serves Southeast Wisconsin, which includes the counties of Milwaukee, Kenosha, Racine, Waukesha, Washington and Ozaukee. It is largely the Milwaukee Metropolitan area.


  21. bing Says:

    what state are you live?


  22. Sid Says:

    I would request school program with Applied Behavior analysis (ABA) as a major method of teaching. Speech therapist are well trained with Verbal behavior and with some ABA technique. This school should cover for upto 14 years old kids.


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