Advocating for our Children
Many folk in the plural & DID community have their own neurodivergences to deal with, so it's no wonder that when we have children, there's a good chance they have special needs as well. This is a Stub article intended to help folk with some parental advocacy advice on how to help children, with or without special needs, now and in their future.
Record Keeping
Regardless of whether your kids have special needs — help them out by getting all records for your kids from schools, doctors, etc. and start storing that stuff or saving scans of it in a locked online vault now.
See Keeping Records & Benefits Qualifications New for more information on that. Eventually they should take over doing this (requesting & keeping records) from you. We highly recommend that y'all keep your own paper trails per that page as well!
We can't overstate this enough. That paper trail will save y'all and your& kids so much time/trouble later if your kids ever either need to prove disabilities that were there for life, or that they were OK before an injury or disability they acquire later.
Intellectual & Developmental Disabilities
For the purposes of this section, Autism Spectrum Disorder (ASD) qualifies as a developmental disability. We (Crisses) had no idea until much more recently. No one in all the schools growing up pointed us out to proper services for our son. We want folk to avoid the same issues so they're not scrambling to get services for a 23 year old like we are.
If in the US (and check if you're in other countries) get your neurodivergent kids on the radar for intellectual &/or developmental disabilities services in your state, in case they need the services when they’re adults (in the US qualifying before age 22 is much easier than after).
It's work to get your kids services, but you may qualify for educational supports, monetary or equipment supports, special schools or programs, respite (rest) services, etc.
Kids with special needs in school
Fight to get a parent advocate in the room for school disability meetings. Schools are supposed to supply parent advocates for accommodations meetings, and rarely if ever do. Don't hold out hope that suddenly someone will show up just because it's in the paperwork. We had maybe 1 show up in 12 years to 1 meeting.
Your local “independent living center” (US!) may have parent advocates available. Just search on that with quotes (because otherwise it’s just old age facilities that come up). ILCs are disability advocacy agencies with a specific US federal grant to help folk for free. Outside the US look for peer specialists, mental health advocacy organizations, and organizations run by people with lived experience.
Last resort: go to local parenting groups for folk with special needs and find advocates. We believe that advocates from within the peer services movement are even better — rather than just being parents, they have lived experience as people with disabilities to bring to the table as well.
Have lived experience & kids ever in the special needs system?
Maybe volunteer to be a parent advocate? Ask your local ILC or other peer agency whether they have suggestions or trainings, and go to bat for someone with kids who are in the disability system.