Author’s Note: I must have read, reread, edited, and re-edited this post a hundred times, worrying whether or not I would offend my “readers,” was being overly sensitive, or blackballing myself from any past, present, or future followers, comments, or likes. In the end I decided to post this because I write to share my world. Whether or not others like that world, want to follow it, or have anything to say about it should not influence me. One of the first rules in writing is to write what you know. I know what it is like to raise a child with a handicap and know he is more like everyone else, than he is different. This is our world, something I know though experience. It may or may not be the same for anyone else, but regardless, it is true for us. ~ Tilly
When I started this blog I did not start it so I could educate the world, voice my opinion, or stir up controversy to initiate change. I believe those things should be saved for those who care about what other people think. I care only when it affects me or my beliefs. Whatever you want to believe is fine, just don’t infringe on me, tax me, or force your view on me believing that I have to go along, follow the herd, or pay under threat of time behind bars. I did, however, for some unknown reason have hope that a blog would be different from the real world, be more open, more compassionate, or at least more supportive. The anonymity of writing online gave me false hope that society might not be as closed-minded as I have found the real world to be.
The first couple of days of writing online was exciting. I wrote, with no preconceptions of anyone actually reading my blog. Then it happened. Someone actually liked one of my posts. Then another, and then I got a follower. Granted, those first few followers were salespeople, but the rush was incredible. Checking my stats, waiting for my email to update with another like, became almost an obsession. When someone actually made a comment, well you would have thought it was Christmas morning. It was so intoxicating that I wanted to post more than once a day, but controlled myself. I wasn’t doing this for popularity, I was doing it to share my world and experiences with others while practicing the craft of writing. Not an easy focus to maintain with the euphoria of “likes,” “comments,” and “followers” clouding the view. Yet, without feedback, how would I know that what I had to say meant anything, was any good, or had any worth beyond the realm of my own home — I did want affirmation and was enjoying it.
With not even 40 posts under my belt, I learned that if I made a post with pictures, the views and likes went up considerably. Everybody loves a pretty picture. So I started planning my posts around pictures. If I didn’t have pretty pictures to draw people in, I was sure no one would read my posts. Also, I read suggestions that adding quotes to a post would draw people in. Being an avid quote collector, I became diligent in using these as well. Further, I learned that slipping in a recipe or two brought all the recipe hounds and cooks out of the wood works and those posts were quite popular. So through my recipe box I searched, pulling out fun and exciting recipes to share.
My posts began receiving more likes and more people began to follow me. Not an onslaught, but more none the less. Whether they were real or blog salespeople trying to get me to check out their blog and possibly buy what they’re selling I’m not sure, but they were “likes” and “follows” just the same.
Today however there will be no pretty pictures, no profound quote, and no heirloom recipe to try out in your kitchen. Today I am going to share a little perspective about society, the Internet, and a world that hopefully most of you will never have to experience.
About a week ago I decided to share something very personal and perhaps risky with the blog world — my son’s disability. I knew this was a risk, but there are aspects of my life that I want to write about and hoped that even if people couldn’t relate, they might find it interesting. Without going into great detail I recounted our experience at the Special Olympics trying to keep it as innocuous as possible. I have nearly 21 years of experience in dealing with how “normal” society reacts to “handicapped” people, and for the most part it has been less than stellar. I thought perhaps some of the people following me or checking out my blog, would find it heartwarming or maybe just nice. I wanted to share something unique in my life. Why? I’m not really sure, because the results were so typical, I felt like I was in the real world all over again.
The silence was deafening —
My blog went from at least a few new visitors every day to absolutely nothing. There was not a single view. Not a single “like” was posted. I have very few comments on any of my posts and knew that this was a touchy subject so did not expect any comments, and I was not disappointed. Now I realize that the anonymity of the Internet is taken for granted, even forgotten, but even if seeing or hearing about retarded people participating in their “Special” Olympics makes people uncomfortable, what is the problem with showing a little support through a “like?”
I’m sure there are some people out there gasping at my “harsh” description of these people, including my son, as “retarded.” Well, let me tell you, I use that term because it is a medical term that was given to people with the IQ range where my son lives. Giving it a prettier term does not change who he is or what I think of him. A pretty word does not make it go away, get better, or somehow make our world any less difficult to live in. And it sure as hell doesn’t change how society treats him, reacts to him, or stop them from avoiding making eye contact or social contact with him. I have written volumes on how forcing politically correct jargon on people only reinforces the differences. It is what it is, so get over it.
The trouble is, society cannot get over it. No matter how many times the words are changed, no matter how hard the people try to accept, no matter how informed, educated, and tolerant the masses become, the stigma of ignoring, looking the other way, putting out of your mind the existence of these people remains. Semantics is one more failed attempt to make those not comfortable with disabilities feel better, to open the minds and hearts of everyone who has been blessed with a life that does not involve a “special” child. And when anyone tries to “share” their unique happy moments, it only manages to make people uncomfortable, bury their heads in the sand, and thank God that they do not have to deal with these things.
Truth be known, I too am uncomfortable at times. But this was the hand given us and we did not throw that hand in or chose to draw a different card. We made the conscious decision to bring our son home and give him every possible chance we could to make his life as fulfilling as it possibly could be. I say conscious decision because when he was born the doctors, nurses, and even other parents of Down Syndrome children told us we would not be doing him any favors if we took him home and were not prepared to deal with what lay ahead of us. I didn’t understand at the time what that meant, but after years of watching families fall apart, parent’s divorce, and children being ostracized by their own siblings, I clearly understand now. And Down Syndrome is one of the “lucky” syndromes, if any syndrome can be considered lucky.
I might sound angry, but I am not. I was angry when my son was born and the pediatrician at the hospital gave me a book that said my son would be dead by the age of 13 (just love those out-of-date handouts). I was angry when doctors dropped us and insurance companies refused to insure us. I was angry when nearly every friend I had suddenly became too busy to return my calls or get together. I was angry when a friend that agreed to babysit for me when I went back to work part-time told me she could not watch my son because the other baby’s parent’s that she watched did not want their child around my son. I was angry when strangers stopped us in the mall as we pushed our son in his stroller asking to see “the pretty baby,” and would recoil when they looked at him and tell us how “sorry” they were and walk away — what they hell were they sorry for? Did they give him that extra chromosome?
I was angry when the early intervention teachers that he saw from 3 months to 3 years told me I was unrealistic in believing they should be working on numbers and letters rather than just playing with him. I was angry when one of my good friends told me, “Nothing like that would ever happen in my family.” I was angry when the special ed teacher in the classroom he was supposed to go to when he turned 4 sent us a letter telling us she felt he would do better in someone else’s class, because I thought an Individual Evaluation Plan meant his plan should not look like everyone else’s.
I was angry when my brother and sister-in-law cut ties with us because we chose to home school our son. I was angry when we lost every friend we’d managed to make after my son’s birth because we decided to home school. I was angry when the Down Syndrome group we belonged to continually preached that we had to be an “advocate” for our child, we had to “educate” people about Down Syndrome, and we had to “fight” for what was rightly ours in the schools, with insurance companies, from the government, and from society. I was angry when the kids on our street refused to play with my son because he was different. I was angry when wherever we went in public, people would stop, stare, possibly even point, or give me a knowing pitiful nod — like they knew what the hell we were going through.
Then I stopped. I stopped caring what other people thought. I started enjoying my son, giving him everything he needed to become the best possible little boy he could be. I treated him like every child should be treated and gave him all the love that he could possibly stand and then loved him some more. I realized he was just a little boy, not a little boy with Downs. I worked hard at sheltering him from the cold, uncaring world that we live in, finding some absolutely wonderful people in the process that were not afraid or made uncomfortable by him. I have never forced my son on anyone or put others in a position where they might find themselves “stuck” with him. He made friends, “normal” friends, and has enjoyed a good life. For the past 20 years he has gone about his life the best way he knows how, ignoring the looks from people we pass on the street.
Still, there are those times, when I digress and for some reason find it necessary to expose myself and my son to the cold injustices of the world. I forget that in the real world, the world that pretends to have compassion for “those special babies,” “those slow children,” and “those developmentally delayed young adults” there is no understanding. Shattering the security that most people enjoy of “not having to deal with something like that in their family” only alienates us further. Children are forced to become “tolerant” in school and adults are intrigued by the promises that they are doing good if they donate their time or money to “helping those less fortunate than themselves.” What a shame the world is such an hypocritical lie.
I know that not everyone finds the handicapped or disabled “taboo,” as there are those people we encounter who genuinely embrace my son and reaffirm my belief in the world. I am, however, disappointed. I thought with the Internet and the onslaught of social media there would somehow be freedom to share my families differences and not necessarily find others to relate but perhaps find people who might nod and think to themselves, “What a nice story to share; I think I’ll let Tilly know and “like” her post.” The silence I got spoke volumes. My hope is that in the future, should I choose to share any trials or tribulations or just funny, heartwarming stories about my son, people can look beyond the disability and relate to him as a human being — because we all have that in common.
Thankfully this is my blog, my outlet to the world, and I can post on here what I want. I did not start this blog to be popular, although the lure of “likes” and “followers” did cloud my judgment temporarily. The anonymity that the Internet offers allows me to voice my opinion and not have to apologize for it, and for this I am — Simply Grateful.
© Matilda Frueh and Simply Grateful Housewife, 2014. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Matilda Frueh and Simply Grateful Housewife with appropriate and specific direction to the original content.