"Yes, thank you. My son is 4 years old and is DD Eligible. His behavior is non-stop out of control and our family is cracking under the pressure. We are not low-income but we need help and we need a break. What we really need in respite care."
"Unfortunately there is a wait list. I will add your son's name, and we'll contact you in 8-9 years."
"8-9 years?! But he'll almost be an adult by then!"
"Well that's great, because we have so many more services available for adults!"
Yes, that was an actual, real phone conversation I engaged in back in 2008. After finally getting to a point where I was desperate enough to reach out and ask for help, I was notified that no help was available. And yes, the DD Case Manager who told me no help was available said it with such a chipper, upbeat tone that it still makes me want reach through the phone and slap her. If I could have I would have.
My first interaction with DDD was undeniably a negative one, and definitely discouraging. Much like a child learning the hard lesson that no one can take the tough math test for you, I faced the reality that our family was really on our own. There was no government help out there for us, and if we were going to make it through Nate's childhood, we were going to do it without the help of the State.
And I'm proud to say that we are making it through. When my first call to DDD didn't work, I didn't stop there. I connected with doctors, friends, clergy, Nate's school and our extended family. I used the resources around me to get the respite care and behavior management help we so sorely needed. I found babysitters who could handle Nate but didn't charge an arm and a leg so that my husband and I can have some time together. I found volunteers at my Temple to spend a few afternoons with Nate so I could attend, and actually watch, a few of Isaac's little-league games.
The lesson here is not that DDD is awful, or that they don't offer incredibly helpful and life-saving services and support. I understand that the combination of my financial resources and a bad phone rep who answered my first call was what resulted in my not getting the help I needed at the time.
To me, the lesson I learned is that DDD is one stop when help is desperately needed, but not the only stop. Once I recovered from my desire to get violent through the phone lines, I was able to look at the people around me and realize that help was available. Nate and our family have an entire community of people available to us when we need it, and we couldn't be more grateful. Having my eyes opened to the natural supports around me was, and continues to be, a true gift.
So I end with a parting message to the DDD rep who answered my phone call in 2008: You surely didn't mean to give me a gift but I learned a valuable lesson, and found some incredible help. Also, your chipper tone was rage-inducing and in the future when you're delivering bad news you should use a tone that reflects the news you're delivering. Thank you.
It is my hope that your message is read and circulated throughout the DDD to be used as a learning opportunity. But I also am so proud of you for not allowing someone to derail your need and desire to reach out for support and guidance. You and your family are examples to others who feel powerless and overwhelmed. You have no idea where and who your efforts will make a difference...just know that you are not alone out there and that you let others know that they are not out there all alone either.
ReplyDeleteI can relate. When my son (who has profound and multiple disabilities) was about a year old (and I had 4 sons ages 5 and under) everyone was constantly on me about "self care" and how essential it was to find respite. So I finally tried -- I called the number that was in the resources directory for respite. Only to be told that he had to be toilet trained, and respite would consist of up to 3 hours at a stretch if I dropped him off in a community center or something. And none of the other kids could go there. And it cost quite a bit. I still remember sobbing as I hung up, feeling far worse after calling than I did before.
ReplyDelete