I live with my son, and his girlfriend, and my grandson. They all have developmental disabilities.
After my son’s girlfriend became pregnant and had their baby, when he was about three months old I heard that they were going to give him away, and I told my son I couldn’t agree to that. I didn’t know what would happen to the baby. I told my son I would rather take the baby and raise him myself, and I did. I went to court and was given custody of the boy. Then, when Julian was about three years old, I took him to have some evaluations and learned that he had developmental disabilities.
We got some help from SSI [Supplemental Security Income, the federal program administered by Social Security that pays benefits to disabled adults and children who have limited income and resources], and we still do. And my son gets some help from the Social Security Disability Insurance program. I’m grateful for that, and I don’t want anybody to feel sorry for me, but it’s not easy, living the way we do. At one point I was told that Julian should be sent away to a special school, but I wanted him to stay with us, so he would know his father and his mother and his grandmother and would know we love hi m. So he did. And today he is a very happy nine-year-old boy who loves his father and his mother and me – and we are a happy family!
Julian gets extra help at school, and when there are meetings I take his mother with me, to help her understand that she has responsibilities. And my son too. So I do what I can. And I get some counseling help from a group that helps grandparents. But our only continuing income is from SSI and SSDI. I would like to find work, and I look all the time, but in this economy… well, there is nothing out there. I am the kind of person who likes to work – I like my house too but I don’t want to be in it all the time! I used to have a job working with disabled people and training other people to work with them. I liked that job and I did that work for many years. But then I was laid off, a few months ago. Now I get unemployment assistance – but that’s temporary, and anyway it’s not what I want. I want to work and be of service. But when I go to talk to state agencies, I always hear the same thing: “We’re cutting back.” That seems wrong to me, to be cutting back when the needs are not being cut back. It’s a little bit tough, I think.
‘President Obama and Congress, we could use some help.’
I’m not a complainer. But it’s not easy, living in a household with not one but three people with disabilities. It takes a lot of explaining, a lot of patience, a lot of time, and it’s harder when I’m also worrying about whether I can afford to keep my house. Life is not bad, but it’s not easy. I could use some help – and if I need help, think how many other people need even more help, especially the older grandparents who are raising grandchildren. Because I like to think I’m a young lady – but some others are old. So if I could say anything to President Obama and Congress, it would be that giving us a little more help would be a good investment. With a little help my grandson will grow up to be a fine man.
To read more multigenerational family stories and to see how they are faring in this tough environment, download the executive summary or full report of our signature report Family Matters: Multigenerational Families in a Volatile Economy.