My little brother, Jack, started high school this week. Sammy should be there too. Although I know the school he is currently at is what is best for him, I want him to be at school with Jack. I want him to be the big brother that shows Jack around high school, I want him to be the sophomore learning how to drive, I want him to be at football and basketball games fooling around with his friends. Just because he has Autism, he has to miss out on all of this?
They say that high school is the best and worst years of your life -- why does Sammy have to miss out on this? High school teaches you things, gets you ready for college, and you have some of the best times with your closest friends. You became that annoying and temperamental teenager that hates your parents, think you fall in love, experience your first heart break, go to dances, learn to drive, look for colleges, etc. Sammy won't experience any of this and it breaks my heart.
As Jack starts high school and Sammy's 16th birthday gets closer and closer, I wonder what will happen to him? What will he continue to miss out on? I love Sammy and who he is -- I accept Autism. However, I don't accept the torture it brings. No friends, not experiencing the things other kids your age are, being an outsider. Does he know he's missing out? That's what gets me the most -- if he knows, is he disappointed? Does he resent Autism? Is he knowingly being tortured?
I am so proud of Jack and for the young man he is becoming -- he is growing up and is still the responsible, respectable, young man that I know I can count on. He loves and helps Sammy just as much as I do -- but does he wish Sammy was in high school with him? Does he wish he could look forward to Sammy being able to drive them to school? Does he wish Sammy could show him the ropes? Does he wish that he could've had him there for his first day as a big brother to calm his nerves? Sammy isn't just missing out, Jack is too -- he's missing out on a big brother and someone to experience all of these new beginnings and fun times with since they are so close in age.
I meant to write about this about two weeks ago, but I have been deathly sick with pneumonia and haven't had the chance. A few weeks ago, my aunt and uncle were here from California visiting so I was home for the entire week. As much as I loved hanging out with my family (especially Sammy) all week,Autism really can be a psychotic bitch sometimes. One of the nights they were visiting, my mom ran a few errands so ultimately... my aunt and I were in charge. My brother, Jack, checked in on him after we had put Sammy to bed and he yelled down to tell us Sammy had pooped.
Now, its already out of the ordinary that we are changing a 15 year old boy's diaper -- however, Sammy's meds just got changed to help control his bad migraines. One of the lovely side effects is looser bowels. If I stopped there, it would be gross enough but I'm not. Sammy decided to take off his diaper after he had gone to the bathroom.
The poop was smeared all over his floor, covered him head to toe, and coated his sheets. EW!!!!!! Sadly, Jack and I have seen this happen before so we collected ourselves, got all the necessary materials to clean, and ran up there like routine. However, just as I am getting Sammy up to go take a shower, a migraine hit, and he began having a fit. This fit included biting me, biting himself, biting my aunt, and throwing himself around. I have been trained to put him into a restraint to help him calm down and keep him from hurting himself or anyone else. To be completely honest -- I didn't want to touch him because he was covered in poop. However, when I tried, his super freak strength activated and it was almost impossible. Once in the restraint, we had to wait almost 20 minutes for him to calm down before we could take him to the shower.
Once in the shower, my aunt and I scrubbed the floors, Jack changed the sheets... yeah, Autism is a psychotic bitch. Why did that happen? What was the point? Isn't it bad enough that he has to have someone change his diaper? Isn't it bad enough he had diarrhea on the floor? Why did he need to bite and rip his hands apart? It just makes no sense to me.
Autism from a sibling's point of view...
My name is Paige and I am 24 years old. I graduated from Towson University with a Psychology Bachelors Degree. I am now working towards my Master's in Education of Autism and other Pervasive Disorders at Johns Hopkins. I am also a Behavior Data Specialist at the Kennedy Krieger Institute Neurobehavioral Inpatient Unit. My younger brother, Sammy, is 19 and has Autism. He is completely non-verbal, unaware of safety, is not toilet trained, cannot get himself dressed, and has difficulty with everyday activities that we all take advantage of. He works harder every single day of his life than anyone I know and he always does it with a smile on his face. He is my true hero and inspiration and because of him, I have dedicated my life to advocating and creating opportunities for individuals with Autism. I hope that I can make him proud and this blog is just a small part of the awareness I hope I can create about Autism and support other siblings impacted by Autism. I love you Sammy - thank you for everything.