August 23rd is my brother Hogi’s birthday. He is 54, and celebrating his birthday at my home. A little about him.
Hogi has Down syndrome. People with Down syndrome have an extra copy of chromosome number 21. That extra chromosome causes physical and mental developmental issues. Their facial features and their shortness of height are easily noticed, as is the shape of mouth and tongue. It can be difficult to understand someone with Down Syndrome because of that complication. Their immune system is weakened, and they easily get sick, along with obesity being common. In 2007 the average life expectancy was 47, today it is between 50 and 60. Unfortunately 90% of those with Down syndrome will develop Alzheimer’s disease. So it is easy to spot differences with someone that has Down syndrome.
My brother is rather like a 54 year old first or second grader, but a first grader that has a lot of memories. One other difference he has, is that he has no filter and wears his heart on his sleeve. While most people see the differences in someone with Down Syndrome, let me tell you rather of Hogi’s and my similarities.
Hogi’s idiosyncrasies are mine. While his mental development may be lower than many, his emotional and social awareness is very high (as with many that have Down syndrome.) That means he can be very keen on understanding when others are making fun of him, or if he is being consciously being excluded, or if others are uncomfortable around him. We both feel that presence, that awareness of perception around us, very strongly.
We both go crazy when our watch gets a scratch on it. ‘No filter’ Hogi tells everyone. I just look at my watch, and look at my watch, and look at my watch, until finally I breakdown and buy a new one. I have at least nine nice watches in a jewelry box on my dresser. We both have an almost hoarding level collection of stuff. Hogi has CD’s and DVD’s; I have books. ‘No Filter” Hogi asks for them every birthday, Christmas, and whenever he sees me. No one will buy for me, so I buy myself-our mailman told my wife that I get more books than the town library. My brother and I are more comfortable with those collections around us.
We both like to shop, walking around stores. Heck, I was a retail manager putting untold hours working retail, and still liked to spend time shopping and buying stuff. Thank God, Hogi does not understand Amazon-shopping by phone. Desserts-we both have never met a dessert that we didn’t have room for after dinner-no matter how stuffed we were.
My point I guess, is that as my kid brother’s guardian, while I notice the looks given to my brother, and can feel those looks, I can also every day see my similarities in so much of what he does, and thinks, and acts. I just don’t look that part, and so get this really big pass. That often makes me sad, others thinking I am nothing like my little brother.
Also sad, is having another brother-Steve, one year younger than me. While my job was to protect my youngest brother Hogi, Steve was fair game to pick on. Let’s talk of him for a moment. While I was a smart kid in school, I did not like to do homework. I got passing grades because I picked up stuff quick, but I got bored and then in trouble. Steve would follow the next year, and teachers would first think “Oh God, another Will…” Then Steve would slyly finish homework, and extra credit, and do everything opposite of how I did. “Oh, that Steve is great. Nothing like his brother,” teachers would tell my parents, year after year. I was never mentioned by name, “just nothing like his brother.”
Stupid brother (Steve). Like Hogi feeling that social awareness issue, I did too. My grandkids are told that they cannot use the word stupid. It is insensitive and mean. I get it. But I too felt I had to fight back, and did so to Steve. Name calling is a good no-filter response. Steve has now been collecting books. He has been doing a good job at it. But can I tell him that? No, I have to prove I am still better than him.
I would like to present a book pulled from public libraries long ago. It was meant to be helpful, but grew impolite very early on; “My Brother Steven is Retarded” by Harriet Langsam Sobol, 1977. One can see why it is hard to find.
Tucked away on a corner shelf, is a small collection of books that for one reason or another are tactfully, or sometimes undeniably inappropriate. This book resides there. And I resorted to a little name-calling.
I have two brothers (and a sister-but sisters are different). Am I nothing like my brothers, or are we like this last book:
“The Royal Brothers” by Agnes Strickland, published circa 1877. I think I will leave it with this: Three brothers, brought together by kinship, and bound together by similarities.
Librarytomes 