Saturday, October 2, 2010

A place to start...

Hello,

I'm a parent of a little girl on the autistic spectrum.  The official diagnosis came down a few weeks ago, but I began to seriously think we might be looking at ASD about a year ago.  I started looking around for the local support network shortly after that, and didn't find much.  I'm a librarian and know a few things about research.  I don't, however, know everything I want to know about how to help my daughter.  I think a lot of things I want don't exist yet.

I'm hoping that we, parents and friends of those on the spectrum, can get organized.  This blog, I figure, is just a place to start.  I will monitor posts, for clarity mostly, but please feel free to post here if you have a questions or information of an event or other item to share.  Eventually, I hope to get enough interest generated to start local periodic meetings in Marquette again.  From there, I've got bigger dreams!  What about pooling resources to get parent training?  What about getting a P.L.A.Y. group in the UP?  What about speakers?  What about... your ideas?

6 comments:

  1. Having a support group again will be nice, and getting therapist or speakers to talk would be great,,,, and just getting families togethere and show they are not alone would be wonderful,,,

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  2. I am so grateful that I found your poster at the library today!! My son Joseph is 9 yrs old and we received his diagnosis of PDD-NOS about 4 yrs ago...although Greg Cleary at Pathways just offered Gillberg's criteria for Asperger's and it is a better fit for Joseph. I look forward to meeting you and ohters as the support group grows...
    THANK YOU,
    Heidi

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  3. Heidi, nice to see you joined the group, My daughter has also been diagnosed with Aspergers through Pathways, she is 5 years old, look forward to meeting you at the support groups,,,

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  4. Thank you Jen for sending me the page info on this group. After all my complaining to you, I finally got the page to load and the comment option to work.
    My name is Traci. I have been a special ed teacher for almost 13 years now. I specialize in working with students with cognitive impairments. for the last 12 years I have been at the HS level. I have had a few students on my caseload with ASD; however, teaching HS students did not prepare me for being the mother of an Autistic child. I have such a different perspective now. The parents of my students have been the best resource I have had on this journey. I am so blessed to have them.
    My son is 5. He has had vision problems from birth. That too has been a blessing because it put us in contact with people early on that really helped us out when he was diagnosed with Clinical Autism at two and a half at the Detroit Children's Hospital Autism Clinic.
    What a rollar coaster ride this has been. I have searched every resource I could think of, even had our school social worker digging for info for me for a local parent support group. I know the parents of my students but that was it. It sure will be nice to have a more organized resource for information closer to home than Detroit or Milwaukee. I would love to take part and offer my assistance in any way possible.

    Ellen, I got information 2 summers ago about Superior Therapy offering the P.L.A.Y. program. I checked into it, and it looked great, but it was SOOOOOOO expensive. I don't know what kind of response they received at the time, but the money was an insurmountable issue for us. We are one of those families that fall in the middle of everything. I make too much money to get help with anything, but I don't make enough money to really afford anything. At one point when we were going to lose our community health services due to the fact that our son didn't qualify financially for Medicaid, I felt like the only way to get him what he needed was to quit my job. We got through that, but it was a very discouraging and depressing time for me.

    Anyway, so glad that you are taking the initative to start this group, and I can't wait to meet everyone.

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  5. Traci, glad you made it, I have to say that is the reason I did not go back to work when Julie started school,she would loose everything, Im willing to give things up for her , when she is older I will go back to work and do for myself but until then, I stay at home which isnt bad to do actually I volunteer at the school,, finances are really tight but you make the most of it,,,

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  6. I too stay at home, partly because I feel I am on call while Joseph is at school, as moms I know we are all on call all the time but I feel even more so given these issues. I have been looking for a job but feel I need an exceptionally understanding employer, for although the phone calls are not nearly has often as they were before (meds), they do still happen! I look forward to meeting other parents...

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