Advice from a Sibling to Parents (Developmental Disabilities)

Siblings: David and Kate

A friend of mine asked me what I thought about a residential placement option he saw. He’s thinking of the future for his children with Developmental Disabilities. After a very long-winded response email, I decided “Hey I should put this to perspective to greater use.”  How bout a little advice from “the other side.” Honestly, let’s put it out there. Your number one worry is “what will happen to my child with developmental disabilities after I’m gone?” And the follow-up “how can I ensure their safety.” Yeah, many of you talk about big dreams for children but really, in your guts, you think “safety.” ( Some of you, secretly are going one step further and you’re thinking “surrogate.” After all, no one can love them like you do, right? How can you find a place that will care enough?) As a sibling after 15 years I can tell you that I wonder “what if I should die before my brother?” And “how can I ensure his safety?”

From the vantage point of 16 years AD (after death). Knowing what I know now, here’s what I wish I could have told my parents. Mom, Dad, there are certain rules of nature that you simply have to acknowledge. I know it’s hard because of the implications. But they’re real, let’s talk about them.

The rules of nature

1. There is no permanency. Whatever solution you find — residential, day program, employment, etc — it cannot be permanent.  
2. There are no guarantees. However much you plan, the unexpected will emerge.
3. Walls do not protect. They hide.
4. Even children with the most severe disabilities will have to cut the cord. Ultimately they will leave the nest.
5. Risk exists for everyone. There is no way to eliminate all risk for your child. You have to get comfortable that there is a level of risk you must take.
6. I am a sibling. Stop worrying about giving me an “obligation” or a “burden.” You have given me a brother. Family takes care of family.
7. Given these rules of nature I cannot promise you that I will keep everything just the way you set it up. I’m sorry. I’ll keep it that way as long as possible but then at a certain point I am going to have to make changes. I promise to be mindful of your values and David’s needs and desires.

Given all of the above…. As parents, its expecting to much of yourself to find the “golden solution.” It’s not feasible. So, let’s go with you’re finding the best solution today.  What is the most important thing to do?  Develop a “circle.”  Develop a multi-generational social circle surrounding your child. Ensure that you are not the only person in your child’s life who is not paid to be there.

Take it from me. It took me 15 years to understand this simple point. Inclusion isn’t about a house or a trip to the park. It is not about how many times you “get into” the neighborhood. Its not something I can write 5 goals for on an IDT plan. It simply means that an individual is not alone. That they have their own “community/ies” (friends, family, people with shared interests and goals). These people are not paid to be part of the community. To be disenfranchised?  To be on the outside of communities versus on the inside? This is what makes a person invisible. Being invisible makes a person vulnerable.

Surely, as a parent, you can understand this. You’re worried about who could possibly replace you? NO ONE CAN REPLACE YOU. It will take a village of people to care as much as you care. To replace the eyes on the back of your head. The one thing you can do (do early, do often, never stop doing) is build the village. If your child grows up living within the village you build, they will always be a valued member of the community and a derivative fact is they will be less at risk, more fulfilled, and reach their full potential.

What parent wouldn’t want that? Start building now.

Giving Thanks: A Sibling’s Perspective on IDEA

I am a sibling. For most of you, this simply means I have brothers and sisters. In my — recently adopted and mid-career change — world this means “I am a sibling to an individual with a developmental disability.” I was the last child born in our family (#11) and my brother David is 2 years older (#10) and my brother Walter  was 11 years older (#5).

There is no portion of my life that is a time B.D. (before disabilities). On our first day of school, I was 4 David was 6 and my brother Walter was 15. We went to school together. It was the first public school classroom in Pennsylvania for individuals with significant developmental disabilities. (Pre-dating PL 94-142, my mother fought for innumerable years to allow my brothers to go to school and eventually won the opportunity to set up a “test” classroom.) I spent my first day of school as a peer mentor to a 5 year old girl named Sandy. Sandy followed me around. It was quite annoying. I asked my mom to tell Sandy to stop following me around and my mom said “why don’t you teach Sandy some of those songs you sing?” I sat with Sandy and taught her singing and clapping to “Miss Mary Mack (all dressed in black).” Eventually we went on to acting out the Billy Goat’s Gruff climbing up and down on everything we could find. The teacher would come over and tell me not to do this or that with Sandy. It never occurred to me that Sandy “should be able to do this” or “couldn’t do that.”  Sandy was Sandy.  I promptly ignored the teacher (a character trait that was immediately embedded in my psyche) and we had marvelous adventures together.

It would be dishonest to say that I didn’t have some bad days. When we won “mainstreaming” (the Right to an Appropriate Education for All), I was definitely put out. David went to my elementary school and I had to go check on him during the day. This was hard to do because he didn’t come to the schoolyard at recess. Didn’t come to the cafeteria at lunch time. I had to ask for the bathroom key and go find what little room my brother was tucked into and try to understand why he was strapped into a chair. It was a lot to make sense of for a little child.

40 years later. I met one particular young lady this year. She reminded me of Sandy in her exuberance. She is 13 and was born with developmental disabilities. She has always been in school. She has always shared a classroom with other students. She has a good chance of going to college, if that’s what she’d like. And she is already planning the apartment she will have when she is grown up.

I know there are many battles still to be fought. I know that there is still much improvement needed to ensure civil rights for all citizens. But on this Thanksgiving, I give thanks to all those parents around the country who separately were united in creating classrooms and education for children with developmental disabilities –regardless of the severity. I give thanks, too, for the early lessons I learned such as mentoring, teaching, and sharing. I give thanks to my mother for encouraging the quality that allows me to imagine everything possible. I also thank my mother for being my role model — ignoring “authority” figures and just doing what is right.

35th Anniversary of IDEA, Thomas Gilhool Receives Lifetime Achievement Award

Read the history: If you’d like to read about 35 years of progress on the right to education, refer to this link from the Dept of Ed. If you’d like to read about the PARC v Commonwealth of PA refer to this link

In loving memory and eternal gratitude to Leona and Marion Fialkowski and Walter Fialkowski.
With continued thanks to my brother David for daily life lessons.