Special Needs Parenting is Hard – Don’t Make it Harder
I was reading about a meeting at the White House with leaders representing various organizations within the disability community, and I couldn’t help but think … they should have asked me!
Us special needs parents, us caregivers who are in the trenches – we are the ones who live this life with out loved ones. The adults who happen to need extra help – they are the ones who deserve to be heard.
I can’t speak for adults with disability, but I can speak for parents of children with special needs. I can speak for me.
Not every parent of children with special needs even feels like I do, I know, but the point is – there are viewpoints the President will never take into consideration because he isn’t hearing our personal stories. He doesn’t understand what’s really at stake for some of us living in the trenches.
And it got me to thinking – what if we were the ones talking to the President?
Now, to me this isn’t a question of who I wish was in the White House (I try so hard to stay away from politics!), but the fact that, no matter who the President is, he needs to understand the reality facing special needs parents for those disability-related funding decisions he needs to be making.
The Headline was About the Disability Community:
Peter Berns, CEO of The Arc, was one of 13 leaders representing groups including AARP, the NAACP and the Human Rights Campaign at the afternoon meeting in the West Wing of the White House.
“Medicaid, Medicare, Social Security and Supplemental Security Income, which are lifeline programs for people with disabilities, should not be at risk in these budget negotiations,” said Berns who urged Obama to “keep our nation’s commitment to people with disabilities.”
But at the end of the day, no matter how marvelously I’m sure those individuals did portraying the concerns of the disability community overall, the impact on individual families who care for children with special needs is still left behind in the politics of it all.
So, let’s just put it out there. What would I want to tell the President?
- Raising one child with special needs is hard; raising more than one child with special needs even more difficult.
- Don’t pity us, belittle us, or demean us in the name of helping us care for our children.
- Don’t think our children’s benefits are a right, a privilege … it is needed help and not a request for a handout: Many of us are unable to hold down a traditional job because we are 24-7 carers for our amazing children with special needs, not because we are lazy and don’t want to work.
- Don’t think every parent feels the same about the need (or lack of need) for assistance – it’s embarrassing to need help; don’t make us feel worse by calling us names, insinuating that we are using the government or taxpayers, or otherwise doing a discredit to our country.
- Above all else – LISTEN to what we are saying. Current benefits cover only a small portion of caring for our children with special needs; creative ways of keeping and extending benefits into needed arenas should be explored (i.e. Respite Care and Medicaid Waver coverage).