Bear with me, I’m a little overwhelmed this week with my todos. I have some great notes from the last two meetings that I will be sharing via post over the weekend. Thanks to everyone for your willingness to contribution to building future hope for our children.
There was a recent discussion on the confusion as to terminology: HFA Autism vs Asperger’s Syndrome. Personally, I thought that HFA (High Functioning Autism) was just another term for Asperger’s Syndrome (now that it was considered part of ASD, Autistic Spectrum Disorder). Today I read about “SCD” a new non-ASD diagnosis, implemented in 2013.
ASD – is an umbrella term that is supposed to include Autistic Disorder (Autism), Asperger Syndrome, Childhood Disintegrative disorder, and Pervasive Developmental Disorder (PDD-NOS). (quoted from: http://www.autismspeaks.org/what-autism
An online survey by Autism Speaks has already drawn accounts of children losing autism services after their ASD diagnosis was changed to SCD. Social communication disorder involves problems with social and communication skills, but without the repetitive behaviors and restricted interests typical of autism. (quoted from http://www.autismspeaks.org/science/science-news/cdc-evaluates-how-dsm-5-may-affect-estimated-autism-prevalence)
I admit, I’m still confused.
I know my son was always inspired and happier when music was in the mix.
Here’s a list that I have assembled from meetings with the PASA Group. Anything you can help with, please let me know, and feel free to add to or edit the list:
1) Locate an attorney to talk to us about Durable Power of Attorney, Wills, Trusts and other legalities of having Adult Children that need a parent’s legal representation and protection…. Tina M. is checking with her source
a) also working on an attorney with SSI/SSID experience
2) Locate a Financial Advisor with SSI/SSID and Special Needs Children experience.
a) Locate self-employed individuals or small businesses willing to take on our children initially as unpaid interns with the potential of full time employment. The internship offers the business protection, and in turn hopefully makes them more open to the partnership.
b) explore self-employment opportunities (i.e., Vendor Routes)
c) Build upon existing programs – DARS, Goodwill, the Arc, NonPareil, etc….
4) Get a better idea of what DARs can and should offer our Aspies – anyone know a DARs rep that might come talk to us?
5) Find a realtor with residential & commerical expertise to talk to us about the potential of an Aspie Community, similiar setup to a Senior Adult Living Community.
6) Organize social events. My son Daniel has agreed to host an event in a neutral area (mid-cities party room) with multiple activities (games, movies, ddr, video games, legos, snacks, etc….) – a come and go get together. Ask your Aspie/Aspergian if they would like to participate. Summer kick-off – first weekend in June??? Suggestions welcome.
7) Locate a medical team with Asperger’s Syndrome experience (not psych – medical), explore MHMR & JPS resources
8) Recruit mentors (like big brother/big sisters) – driving practice, computer maintenance, money handling, hygiene, awareness
Sometimes, I feel like such a snob. I get upset when I heard about DARS finding an Aspie a job at a local store stocking shelves. I don’t consider a minimum wage job at something that would bore most Aspies to death a successful job placement. This makes me feel like a snob, because i know a lot of good people who work at grocery stores, department stores, etc… and this jobs are important to all of us. However, is it wrong for me to want my son to have a career that allows him to pursue his passions (art and literature), especially after he worked so hard to earn a BA and an MA for which we are still paying. Wouldn’t most parents hope for a promising career after their child finished college. And then again, I know many college graduates that have settled for much less than their qualifications in order to survive in our current economy. I think my mindset is still stuck in the 80’s when even non-degreed jobs paid a reasonable living. In fact, my husband and I never completed our college degrees, both started out at the bottom and were able to work up to decent living wages. This just doesn’t seem to be the world we live in anymore.