This blog was written by the three sisters of Scott Pehrson, a participant at the CPD’s Developmental Skills Laboratory adult day program. You can read more about Scott’s journey at the CPD in a previous CPD Legacy Story blogpost.
Scott with his sisters, Michele, Jeanette, & Anna
“Rubber Duckie, you’re the one, You make bathtime so much fun! Rubber Duckie, I’m awfully fond of you, Vo-vo-de-o!”
We know all of the Sesame Street songs that were ever written; when one of us starts singing the first line, the others join in and finish the song.
That’s the kind of thing that happens at our house. It happens when you’ve spent your childhood listening to all of the Sesame Street videos in the world, over, and over, and over again. That’s the kind of thing that happens when Scott is your brother.
Scott is the second oldest of four siblings; one brother with three sisters. He thinks he is the king and we are only here to serve him. He’s pretty much right about that.
One of the greatest things about growing up with a brother who is severely disabled is that you learn to think of someone else’s needs before your own. “His needs had to come first, and that is sometimes a hard sacrifice to make as a child and as a teenager. He couldn’t be left alone because of his cognitive limitations; he always had to have someone near him to make sure he had his helmet on (in case he had a seizure); he had to be watched when he ate so he wouldn’t choke; you had to know where he was at all times.” A lot of that responsibility fell on the oldest sister.
Everyone had to make sacrifices to make it all work. “Having lots of responsibilities that our friends didn’t have was a challenge. I feel like I had to grow up much faster because of the responsibilities I had with Scott,” shares the youngest sister.
At times, each of us had our “Why do I have to have him as a brother?” moments. Like when he popped off all of the heads of our Barbie dolls…yet again. Or when we were awakened by a big plop of drool on our head and a happy “Hi!” Or when we had to clean up his books spread all over the floor for the hundredth time. Or when he decided to color all over our homework assignments. That’s when we decided to put locks on our bedroom doors.
Then there’s all of the summer vacations that we didn’t take as a family. The times we didn’t go out to eat at restaurants. The times we didn’t ask our friends over to play or sleepover because Scott would “bug” us. The times we had to go to Grandma’s house or tend ourselves when we got older while Mom and Dad were at the ER, the doctor’s office, or the hospital with him.
“There were times when I was growing up that I wished Scott was different,” another sister shares, “but he has always been a big part of me. It wasn’t easy growing up with a brother who has special needs. It had its tough moments, but those moments aren’t the ones I dwell on. I dwell on the ones where he has given me something. When I think of Scott, I think of his sweet smile, his big hugs, and the special moments we have together.”
We’re all on the same page about the great impact Scott has had on our lives.
“At a young age we had responsibilities that most people don’t have, which was a challenge, but also a benefit, because, as an adult, I know that my experiences with Scottie have made me treat and see people differently,” one sister shares. Another agrees, “He has made me a more compassionate, unselfish person.”
“I think that one of the best things about growing up with Scott is how much he taught me! He taught me to laugh and to be grateful for the little things in life. He taught me responsibility, patience, persistence, laughter, love and much more. I feel like I have always had such a special bond with him and am so grateful for him in my life. ”
“I wouldn’t trade him for a brother. I wouldn’t trade who he is because he has made such a difference in my life.”
One of the differences that he made in all of our lives was who we chose as friends, and eventually, who we married. Any friends that we brought home had to pass the “Scottie test,” as we called it. If they ignored Scott, or he didn’t “buddy up” with them, then they didn’t become close friends of ours. We knew that he was drawn to people with good hearts. Needless to say, all of our husbands passed the “Scottie test.”
Now that we are all out of the house and Scott lives alone with Mom and Dad, we are still concerned about his needs and the challenge that he is for our parents. What does the future hold for him and for us, as his sisters? That’s hard to say at this time, but, we all want what’s best for him. We know he thrives on his routines and his simple life, and loves to go outside to see his animals. As he gets older and our parents get older, we realize that in order to keep that for him, it will take sacrifices from us. We are up for it and will do whatever it takes to keep him safe and happy.
We are all so thankful for Scott in our lives and for the things that he has taught us. For now, it is time for him to teach the next generation.
Uncle Scott with six of his nine nieces and nephews.
Tags: adult with disability program, advocacy, CPD Legacy Story, severe disabilities, siblings
