We recently had the honor of interviewing advocate for children with disabilities and founder of Disability Matters, Ellen Stumbo. When her daughter was diagnosed with Downs Syndrome, Ellen struggled with coming to terms with the news. She then found one of the strongest voices in our community and uses it to educate people about the beauty and life lessons behind developmental disabilities.
Q. What big lessons have you learned about yourself, from parenting a child with Down Syndrome?
I have learned a few things. First I’ve learned that the value of my life, any life, is not based on eloquence, performance, or achievement. I am naturally a soft spoken person, but I have learned that I have a voice and I can use that voice to speak up for myself and my kids.
Q. What are the biggest obstacles families in the special needs community face and how can programs that support our community help?
Isolation is a big one. Any time there are events that make it accessible for all kids to be a part of the event, make a huge difference. Respite is also a big need. Many special needs parents never get a break, and there are more demands in parenting kids with disabilities, respite programs are a blessing for many special needs families.
Q. Can you share with us some things that you do to minimize carer burnout for yourself?
You HAVE to take care of yourself and you have to make it a priority. It means time off, it might mean finding a hobby or something that gives you life. It might mean seeing a counselor or, for those with clinical depression or anxiety, getting on meds.
I always tell parents, “you matter too, and if you do not take care of yourself, you cannot effectively care for your kids.”
Q. Do you think parents of children with special needs have different hopes and dreams for their children? If so, do you believe it’s because of society that these hopes and dreams differ?
Yes and no. Yes, in that I am aware that some things will be harder or different for them. For example college, or marriage, or having their own family.
Different, because there are college options, and they might still get married, and their family might just look different from what people typically think of as a family. I do think in some ways society contributes to these ideas, because it is hard for my kids to enter a world that is not ready for them. This is why advocacy is so important.
Q. What would you say to people that don’t understand special needs?
It is hard to understand what you don’t know, and it’s hard to know what you don’t experience. In order to understand disability, there is nothing like actually getting to know someone who has a disability. Sure, I can share about my family, but it is my experience that just sharing can keep people in a stage of pity, or thankful it is not them, but when people get to know my kids, when my daughter who has Down syndrome interacts with them and melts their heart, suddenly they have a first hand positive experience, and that is what makes all the difference.
And here is the thing though, that person has to chose between staying ignorant or actually step out, and approach people with disabilities as people.
Q. What was the most disheartening reaction, towards your children’s special needs, that you’ve experienced?
A few years ago, we went to a waterpark and my daughter, who has cerebral palsy, wanted to go down a water slide. I had to carry her and the large inner tube. I kept bumping the mom in front of me and I could tell she was annoyed. I apologized every time but she kept giving me “the look.”
When we got to the top, I set my daughter down on the landing where she could hold on and be safe. At that point the mom noticed her legs, her surgery scars, and how they are slightly bent. her look changed from annoyance to absolute pity, when she looked at me I could tell she was sorry for me and for my daughter. That is one I’ve never forgotten, because my daughter saw it too, she could see in the woman’s face what she thought about her.
Q. What is the best interaction you’ve had with a stranger that was related to your children’s special needs?
The time we went to a garage sale, and there was a stuffed Mickey Mouse. My daughter who has Down syndrome loves Mickey. The lady who lived there came over and said, “Mickey has been waiting for a sweet girl to come get him, and you are finally here!” She gave her the Mickey and said she could have it.
Here is the deal though, I do not believe she did it because she had a disability, but because her excitement seeing Mickey was so sweet. She also told the other two girls to pick something and just take it.
Q. What do your girls want to be when they grow up?
My daughter with Down syndrome will tell you currently she wants to be a princess, and that’s that. My daughter with cerebral palsy wants to be a chef, or she wants to go back to Ukraine (where we adopted her from) and help kids with disabilities find forever homes.
Q. Each of our residents currently have jobs. What are your hopes for the future of employment for those with special needs?
I hope we get to a point where everyone can have a job and not be discriminated because of a disability. Employment among people with disabilities is very low.
I don’t expect my daughter with down syndrome for example to be the CEO of a company, but I expect her to be capable of doing many other jobs, like work at a library (she loves books) work at a salon, work at an office doing some administrative work.
Q. As your children get older, what are the things you hope they carry with them from your time together?
I just want them to know they are loved. That we are proud of them, and that we believe in them.
Q. What would you say to parents of those with special needs today?
It is okay to be scared at first, we all are. This journey is not worse, it is just different and, in many ways, it is still the same. You will learn that your kids are kids first and their diagnosis, although a part of who they are, will not be what defines them.
You can learn more about Ellen and her family through her blog www.EllenStumbo.com