Thursday, January 3, 2013

27 Years and Counting

So there is something I rarely share the whole story of. It is really difficult for me to talk about. I am not embarrassed, there is just so much information and emotion that comes after the following sentence.

My 30 year old brother, Billy, is severely disabled.

Billy is 3 years older than me, but at a young age I was grandfathered in to the BIG SISTER role. People ask me "how was your childhood with a brother with severe disabilities?" My answer is, well it was all I knew, and it did not really affect me until my daughter started her journey of special needs when she was about a year. I look back on my childhood and it was tough, but again it was all I knew.

I remember at 5 having to remember to lock all doors behind me or Billy would escape. At 4 I had to be responsible for dressing myself and tying my own shoes. Some times my feelings had to be put on hold because there were bigger things going on. Some days I would wake up to my amazing mother cleaning feces off the wall because Billy decided it was fun to do. Or watching my dad restraining him so Billy wouldn't hurt himself when he was in a full fledged episode. Billy for many years engaged in self injurious behaviors like biting his hands and banging his head against the wall. Some times he would bite chunks out of his hand and split his head open.The walls had a row of head butts indented in the wall. My Mom was the master of spackling and repainting.  My dad worked rigorously Monday to Friday, he left the house at 4 am and got home by 5 pm. Billy only slept 3-4 hours a night consistently. My dad would still get up with him countless hours in the night, and care for him all weekend so my Mom could catch up on sleep for the week to come, because she worked nights. There were no buttons in any of our TVs so he couldn't have control of the volume. My friends were always really supportive of my life, but when they came over I constantly had to explain things. But like I said it was all I knew. I realized at a young age how valuable life is and how lucky I was to not have to face what Billy did.

His whole life he was diagnosed with severe autism. He is non verbal and is on a 2 year old level. He has a lot of sensory issues. He was not potty trained up until last year. A few years ago another genetic test was done on him, he has had so many before. They found a mutation on his 12th pair of chromosomes linking him to Smith Magenis Syndrome, 1000 people in the world have it. I truly believe its a form of Autism, but it is so new and because 1000 people have it, studies are rarely done. He was born in 1983 and something so severe in the 80s was just masked by and immense amount psychotrophic meds. There was no google. It was the age of "What doctor says is correct and you listen". There was no parent training. There were no support groups. It was my mom, my dad, me, and Billy against the world.

Every single day for the 4 of us was a constant battle. Making sure Billy wasn't in the room when opening a new jar or a garbage bag because the sound set him for a loop. At 7 pm all TVs off because if he heard wheel of fortune the living room wall might come down. Haircuts, I will never be ready to talk about what transpired with hair cuts. I can tell you when he is happy he is a ball of joy. His laugh is so honest and real. His smile so true. The smallest things make his life happy. He is an angel and extremely special.

So this was my life and still is. Billy is now in a center where he goes to school 6 days a week and lives in a house with 5 other people like him. He has constant 1:1 24/7. He is off all of his meds on some insane organic diet and happier than ever. In his late teens his quality of life dwindled, so we made one of the hardest decisions. Hind sight, it was the best thing we ever did for him. We see him often.

When I was pregnant I was ready to conquer the world with my new family. The last thing on my mind would be my daughter having special needs. I had that chapter in my life already. I payed my dues, I thought. I had no resentment towards my child hood or my brother. My life was in perspective. I was so thankful and positive. I got it God, I passed the test. I understood what life was all about. It was the last thing I expected. Now here we are on the Spectrum, on the other side, the high functioning side. Experience on both ends, they are both difficult in their own ways. The pain I never felt as a child, that I guess I should of resurfaces ever so often.

When Grace was younger she would bang her head against the wall, and inside I would lose it. When I am going on no sleep and we have to physically force her to do something, I break down. When I read her progress reports from all her therapists, my heart drops. I still do not understand why things happen the way they do. How the hell did my parents do this? How did they always have a smile on their face and enjoy life the way they did? A lot of what my Mom and Dad did keeps me sane today. On the bad days when I push through I think back to what they did, and it gives me strength. My mom and dad had an Autism Awareness Car Magnet from when car magnets were very rare. And now I have it, it was passed down to me. How deranged is that? Now I wonder, will I pass it down to my child for my grandchildren? Yea, I might be getting ahead of myself but do you blame me?

Autism has been apart of my life for 27 years and counting. There is a reason. There has to be? right?  


  1. wow.... i cant hold my tears back.... reading your story really made me reevaluate my new years resolutions and prospective on life. I know you for some time right now, but through all your stories, blogs and posts I have learned so much more about you, but about Grace, Autism and what is really important in life. I admire your strength, positive attitude, and desire to make Grace's life easier and happier for her. I really hope your blogs tern in a book one day, not to make you famous (but it will) but i really think that those blogs really can help others... Your blogs are so pure, honest, funny, and sad at the same time sometimes... what i was trying to say... mHHHH THEY ARE REAL ... there is no covering up, you say it how it is.. :) I love you Kelly, Grace and Ernesto....

  2. This leaves me speechless. Beautiful!

  3. Great post! You've got quite the blogging career already!

  4. you are an amazing woman kelly.. i love you ! <3