When I was younger; like registering to vote young; I considered myself not so conservative; pretty liberal but not too liberal. I had a sheltered, young, middle class woman view of the world. At the ripe age of 18 I had a job and was well versed in having taxes being taken out of my paycheck. I didn’t like it but I knew that’s the way things were. Fast forward to me graduating nursing school, my first “real” job and I learned very quickly the value of employment with health benefits. I also learned about welfare and Medicaid/Medicare and where the tax money that was taken out of my hard earned check was going as per our government.
Tommy and I were married and expecting Thomas. After a couple of months and many years of therapies, evaluations, MRI’s, etc… we found that Thomas was special needs. Rarely to never did we not pay for anything ourselves out of pocket or we used our employer provided health insurance for services or doctor/specialist appointments for Thomas. We didn’t know any other way. Until I was told about the Medicaid Waiver program for people with special needs. With the Waiver the government waives the income of the parents and the disabled child/person is eligible for Medicaid health insurance as well as services to help the special needs child. One service we had through the waiver program was a very dedicated woman named Debbie who came every week to my house to work with Thomas on things such as going to stores in the neighborhood, using money, crossing streets safely, etc.. And she would take all my other kids with her. Debbie was one of a kind. Everyone, especially small businesses on Forest Ave knew Debbie and my kids.
You see when you have a special needs child every freaking thing is a secret. And you have to hook up with other special needs parents to find things out. Or spend a lot of your life on the phone or computer going from one resource to another to discover what is are out there. I did a combination of both. I spent a lot of time on the phone and then discovered a priceless online community of moms who’s children were similarly diagnosed like Thomas. Thomas was the youngest of “our” children when he was 6 years old. I learned so much from these incredible women from all over the country. We are fortunate to live a ferry’s ride away from the greatest city on earth so finding doctors who are specialists in Manhattan wasn’t difficult. It’s the day to day living you need the most support for and that’s what these women did for me. They listened to vents, gave praises to doctors and therapist who “got it,” provided invaluable IEP meeting advice and did not judge.
I wouldn’t want to relive those years with my son, things were so so hard. But…I have learned so much from my wonderful friends. That nothing is as it seems on the outside, my favorite: “Normal is just a setting on your clothes dryer,” that everyone has shit they are going through. And most of all, try to be the person you wish you had when you see someone where you once were. A lot of times they won’t listen at first but you can always plant a seed.