Special Needs Activism

[Deleted]

I have donated to Hands and Voices (an organization for hearing loss).  I just e-mailed the State insurance department on why hearing aids for children are not mandated to be covered by insurance companies.

Not special needs related, but I also e-mailed the school to see if they had any thoughts on full day Kindergarten (no answer). 

What are you doing?  What more should I be doing?

[toastie]

Keeping my kids alive. That's about all I have the energy for lol

Don't pressure yourself, you're doing a great job. We don't have to be superhero activists on top of superhero parenting.

Personally, I feel that by including my kid she in community events and showing people that families with special needs kids are happy, fun, silly, etc is activism. Or at least that's what I tell myself when it comes to fundraising and advocating lol

[mrsbuttinski]

@clarypax, IME, contacting elected officials about an ommission in coverage is more effective than contacting the state's insurance regulators.

I don't do shit in terms of activism. I didn't have the bandwidth when DS was very hands-on and I'm too busy with my parents to step up now.

FWIW, I met with mom's brand new psychologist and DS came up. Bitch wanted to know if DS had a therapist in a tone dripping with judgement. LIke DS's needs even play into my mother's situation. On my to-do list- new therapist for mom.

[numbbears]

We donate to local disability/autism groups. They're always looking for volunteer for events, but I'm normally taking DS to them. I imagine I'd volunteer once DS gets older.

DS's ABA director wanted me to apply for an advocacy/policy making/political program thing (I'm not 100% on what it is) and I was one of the people selected for next year. So I guess I'll be more involved in activism next year.

[Deleted]

I'm not pressuring myself. And I don't mean to pressure any of you.

More like I am fed up and speaking out on a number of issues. I'm certainly not a fundraising super mom or anything like that. I am speaking out more to public officials because I feel like that is their job to listen to constituents. Not sure if it actually effective although I have gotten responses and fixes on a local level.

Which lawmakers to reach out to? My district representative?

[mamaturtle]

The latest thing we have done is donate things to the daycare and the shelter. We have already donated canned goods when our Cub Scout Pack was asking for donations for a charity last month.

We participate in the ASD walk that our ASD support group hosts once a year.

I don't do anything more than that. There are moments I want to improve the Cub Scout flag ceremony or be den leader but I just don't have the time. I want to start a chess club for the elementary school for my son but it is too far and I have to work. I doubt they have any local chess clubs in this town.

[spooko]

TBH, this isn't really my "cause." I would donate if asked and I would fight for my kid as necessary, but as far as activism and charity go, my heart is often drawn elsewhere.

[mrsbuttinski]

@clarypax, Where I live, it would be my state representative and state senator for a state mandated insurance issue.

spooko, that would be me, too. I donate a lot of time to scouting at the district level even though DS has aged out. I also contribute to Aid for Friends (a food service for isolated disabled and elderly people), Project Home (homeless) and Project Restart (homeless).

[Deleted]

I also am not a special needs activist but do support other causes and those who choose to speak up for people with special needs. I have several friends who are active very locally in their communities--speaking up at school board meetings and playing an active role in the SN community at their kid's elementary school.

[Deleted]

I had different ones in the past before having a family like the environment and protecting endangered animals. We have a lot of museum memberships etc.

But lately my focus has been more on woman and children and improving quality of life etc.

[anintrovert]

Not directly SN but I advocate hard for adequate educational funding. I knocked on doors and manned tables during the recent election for Mill and Bond initiatives. I also contact my local reps. I annually attend a conference about current state level legislative issues affecting children that has a meeting with my state rep and senator built in. I've testified at state level Senate and House Committees.  I'm heavily involved in PTA (currently unit Pres and on a state committee).

I'm part of a grassroots group advocating in my district for appropriate ASD services at the middle school level. We meet monthly, attend board meetings, I have spoken at a board meeting, talk to and email board members and the top guy in SpEd, attended Special Education Advisory Committees.

More recently with the appointments that have come from our President-Elect that have the potential to be disastrous for SpEd and Disability Rights I have emailed and called my State Senators.

Advocacy has sort of taken over my life the last few years. LOL

I also donate to a few groups. Disability Law (my state), State level Autism Society, and my local Arc.