Growing Up With Special Needs

Here is a post I posted on my PTPA Blogaholics site not that long ago. I realized that I never posted it here.


I am a sibling to someone with special needs.  Thanks to one of the other Mom bloggers here . I am inspired to share some of my story with you. I cannot get into it fully, because it holds a deep and sensitive spot in my heart.  I just cannot express it properly either, but here is the best that I can do and what I can share.

My brother. He is my hero. I admire his strength, his courage, his everything for that matter. Life is difficult enough as it is for most people, let alone trying to get through it with disabilities and special needs.
BUT… It wasn’t always that way. I didn’t always see his strength. I didn’t actually appreciate the differences between him and I. You see to me, my brother was normal. He was all I had and all I knew.  Don’t get me wrong, I knew he couldn’t walk, he couldn’t read and write. I knew he couldn’t do the things that I could do. I understood that he had special needs. But he still was “normal” to me.

I fought with him like any other siblings would. We fought hard. We played together. We had the same imaginary friends. We watched TV together. We had a lot of fun.

I didn’t understand why when my Mom would take us out, other kids would stare at him and point. I didn’t understand why when I was in grade 2, the kids made fun of me cause I had a “zombie” brother. The kids didn’t like me because of it, in some way they saw me as “different” and it broke my heart. The school and my family had to intervene and hold special sessions to teach the other kids about special needs and acceptance. It was hard.

I didn’t understand why when their was a choice to make between us, he would always win or get his way. I didn’t understand why my Mom gave him all her love and attention and while I knew she loved me… I truly felt that she loved him more. I’m 33 years old today, and I know with all my heart that she always loved me but that she had to love him different. I know that now. As an adult and as a mother. I understand that NOW.. but as a child, it hurt. It left scars.

I also didn’t understand how he felt when I could go places and do things he couldn’t.  I never thought about the little boy who sat by the window and watched. He watched my friends come and go, parties and sleepovers, he watched me learn how to drive a car. He’s watch me grow and travel some of the world. I never considered his feelings. As I write this, I realize that even now, I forget some of these things. For that I am sorry.  Today he watches as I am married and have 2 wonderful children. While many people with special needs go on to marry and have families of their own, this has not happen for my brother.
I woke up one morning when I was 8 years old and he was gone. He was 12 years old and my parents could not give him the care he needed, so he went to live at Bloorview Children’s Hospital. He went to school there as well. Bloorview still exists today, but its different than the Bloorview he grew up in. My parents had to work, they couldn’t afford to hire extra help. This was the only answer. He was getting older, heavier and needed more attention.  My parents brought him home every weekend, every holiday and every chance they could. When he was sick, my Mom brought him home to care for him. She always said that no one could ever make up for a Mother’s love and her care.

My brother is 37 years old today and he still comes home every weekend, every holiday and when he’s sick.
Everything changed when he left. It was sad. I didn’t understand. He didn’t understand. He cried and cried and cried and wondered why he was sent away. He was 12. What did he know about the extent of his needs or that my parents needed to work and couldn’t afford the care he needed.  I was alone.

He lived at Bloorview until he was in his 20′s. Since Bloorview only housed “children”. The time came when other choices needed to be made. He couldn’t stay there, but where would he go? What kind of place would he go to?

He was persistent. He didn’t want to live in an institutional setting. He wanted his own place. His own apartment and he worked hard to show everyone that with the right support, he could do it. His story, this story is a courageous one. He wasn’t successful at first, but he tried again and today he lives in his own apartment. He has 24 help and attendants that come up for his regular bookings to get him up, cook for him, bathe him and help him with the things that he cannot do.  I’m so proud of him.

In my second year of university, I was asked to speak at a workshop designed specifically around my brother at a Convention for a children of special needs in Kansas City, Missouri. I was there to talk about his successful transition from institutional to community living. I was also there to tell my story and I have never told it again since then. It was at that convention that I realized that there is so much support for parents and caregivers, but not enough for siblings. As a sibling, I am his future and I need support too. I need to prepare and I need resources.  It was a fantastic opportunity, one that will never be forgotten.

For the past 37 years of her life, my Mothers life revolves around him and making sure that he is okay. Im a Mom and I make sacrifices that only other Mom’s can understand. But my Mom has made sacrifices that only other Mom’s of children with Special needs can understand.  When he was born, the Doctor told her that he would not live. He tried to convince her that she should give him up. She told him that he was crazy.  Although he couldn’t live with us full time and only lived with us part time most of his life, My Mother makes sure everyday that his groceries are bought, that his clothes are clean and that he has everything he needs to live and be happy. Despite the fact that both my parents are in poor health, she still looks after him every weekend. Goes to his appointments with him.

I know that someday my parents will pass on and that I will take over and be the primary person who is responsible for my brother and I am terrified. But together, I know that we will succeed.
If you have someone is your life with special needs, remember that it affects everyone and we must try not to take that for granted. We must try to understand how the parents feel and why they do what they do. We must remember the siblings who may not get the same attention and we must remember the child.

I wish I could tell you more, but I can’t. It will make me cry. Not right now.  Its just a gist of growing up with special needs.

No one is perfect, we all make mistakes, but where you can, try and remember the other person (whoever that may be in your situation).

He’s my hero. I get caught up in everyday life and the trial and tribulations of  raising toddlers and working full-time, that I still sometimes forget about him or his feelings.  I try and talk to him daily, but its hard. I visit him almost every weekend. My kids know and love him. Im so proud of him and all that he’s achieved and lived through.