As my son laid in the neonatal intensive care unit with promises of severe mental and physical disability, I stood at a Wal-Mart, watching an older man interact with his grown son. The younger man, probably in his mid-to-late thirties, clearly had a mental disability and the two of them bopped about, oblivious to my stare. In those days I stared at a lot of parents with their special needs children. I wanted to approach them and ask, “How did you do it? How did you get past the disappointment and guilt and sorrow? Was it hard? Do you ever still wish your child was normal?” I wanted to tell them about James and ask them if I could do it – if I could follow in their footsteps. But I was always afraid to approach them, and especially to engage them in such an honest and blunt conversation. In my twenty-nine years I had had little experience around people with disabilities and I was awkward around them. I didn’t know how to talk to a parent of a special needs child. Could I ask them questions? Would they be upset? Could I mention the disability?
As my family and friends continued to pray for a miracle for my son, I began to get a taste for life with a special needs family member. I realized that if someone saw James’ feeding tube protruding from his tummy I would much rather they ask me directly about it than ignore it in an awkward, curious silence. When my children and I were in public I started acting differently when my toddlers loudly asked questions like, “Mommy, why is that lady pulling that thing?” about a woman with an oxygen tank. Instead of shushing them I answered in a normal voice and I didn’t scold them for their curiosity.
These things made me wonder, “what is the social etiquette in such a situation?” I believe there are actually many people who want to interact in an honest, friendly way with people who are “different,” but we have all been so afraid of offending that we do nothing instead — except feel ridiculously awkward.
Recently I asked some friends with special needs kids for their thoughts on the matter. Teri and I know each other from church. She is a freelance graphic artist, her husband Kevin is an electrical engineer and they have two children: Hannah, a graduate student on the East Coast, and Kellen, a twenty-two year old with Down syndrome. Kellen currently attends a local junior college part-time and works part-time at an area nursing home. He is a voluntary assistant coach at Eureka High School for football and track, a Special Olympics athlete, and an altar server at our parish.
Amanda, her husband, Curt, and I all attended high school together. Amanda and Curt both work for a local telephone company. Their first child, Charlotte, was born in July of 2010; she has Down syndrome. Charlotte participates in group therapy two mornings a week and Young Athletes, in preparation for one day being a Special Olympian. In August of 2011 Curt and Amanda welcomed their second child, Briar. Amanda likes to point out that, “it is obvious that God knows exactly what he is doing! Having a sibling so quickly after Charlotte was born was the best thing we could’ve done for her. They are the best of buds and love chasing each other through the house and ganging up on the dog. Charlotte never misses an opportunity to boss Briar around, like any good big sister should.”
Below is Part I of our conversation:
When your child was born and the disability was discovered how did people respond? What do you wish they would have said?
Amanda: Charlotte surprised us by making her appearance almost 4 weeks early and surprised us again when we learned she had Down Syndrome. We initially only told our immediate family that there was a possibility of Down Syndrome and they all responded very positively upon learning of Charlotte’s diagnosis. Many members of our family work directly with children with disabilities and their insights were invaluable during a time when we had so many questions.
After we got the official diagnosis Curt and I sat down together and sent a text to our friends to tell them the news. We wanted to avoid that ‘elephant in the room’ the first time they met Charlotte. Just like our family, our friends were very positive as well, coming to meet Charlotte within the first few weeks, bringing her gifts, and telling us congratulations and how beautiful our daughter was. It was comforting when some family and close friends acknowledged that because, while we were elated with the arrival of our new baby girl, we were also grieving for the child we had envisioned. Obviously we would not change a thing but initially this news can rock you to the core.
Very few asked about the diagnosis, and that was fine with us. If the situation was reversed I’m not sure that I would’ve known what to say to a friend so I did not take their ‘silence’ as an insult, just more of an uncertainty and a carefulness to not say the ‘wrong’ thing. Which is why Curt and I appreciate you doing this piece, because like I said, I wouldn’t have known what to say either, if the situation was reversed!
Teri: Kellen was diagnosed prenatally with Down syndrome and duodenal atresia, an intestinal anomaly. He required surgery at one day old to repair an obstructed bowel. His medical need helped to give us a perspective during the pregnancy that put the disability secondary to his health.
Our family and friends responded with love and support. The only negative response I recall is one of our grandmothers referring to him as a Mongoloid, which is a term her generation used for individuals with Down syndrome. We told her the term is no longer used and I don’t recall her using it again. People did say he looked like he only had “a little Down syndrome,” which made me laugh because you either have it or you don’t!
When people meet you and your child what do you want them to say? Should they acknowledge in any way your child’s disability?
Amanda: Say the same things you would to any other child you meet in the grocery store, or at church, or at the park. Say hello, complement their eyes/smile/dress or whatever else it may be. And if you don’t know what to say, a genuine smile is sometimes better than any words. Actually, in the two years since having Charlotte I have only had one person acknowledge her disability. She said to Charlotte with a smile on her face, ‘you look like my niece!’ Perfect! I knew this woman was trying to open the doors of communication but didn’t quite know how to go about doing it.
If you are curious I urge you to respectfully ask questions. I think any parent would prefer you ask questions than to just stare. Every opportunity we have to educate somebody that our daughter is more alike than different is another step closer to our society welcoming people of all abilities into their schools, sports teams, churches, and places of employment. Don’t be afraid to ask questions in order to educate yourself – Down Syndrome is not a dirty word.
Teri: When Kellen was a baby I was sometimes surprised that people could see that he had Down syndrome. I just thought he looked like an adorable little baby! It didn’t offend me and people were always positive in their comments. They generally made conversation because they knew or loved someone with Down syndrome. Comments tended to be encouraging and still are. Now I’m glad his disability is obvious because I think people cut him some slack if he is slower at doing something or is hard to understand. Kellen has good social skills so interactions with others are usually positive. We are advocates for ending the use of the “R” word (retarded). Kellen does recognize that word as being a “bad” word — it’s hurtful. I try to correct people when I hear them use the term.
Is your child aware of how people stare or if he/she is treated differently?
Amanda: Charlotte is too young to notice any difference.
Teri: I asked Kellen this question and he said that sometimes he sees people staring at him but that it doesn’t bother him. I would say that except for a couple of instances over his lifetime, people have generally treated him with kindness and respect. He has been blessed!
Read Part II, where we talk about how parents can educate their children about people with special needs.