Autism, DownSyndrome, Special Needs. A response to the Ontario Letter

Get Real Live / Journeys / Susan

Autism, DownSyndrome, Special Needs. A response to the Ontario Letter

{Pictures above provide a glimpse into the life of Peter}

In light of the recent and very disturbing letter that was sent to the parents of a boy with Autism (see this Huffington Post Live Story click HERE)I am compelled to share this story with you.

My little brother, Peter, who is not so little now, he is 36 and definitely exceeds my physicality, has DownSyndrome and definitely displays some other characteristics that can be found on the ASD Spectrum. He can be a challenge and throughout his life has most likely upset people, caused them great discomfort and whatever else we {the so called ‘normal’} people have to interpret and manage when our life collides with someone on the spectrum.

Throughout the years, I have written countless stories about my brother and the lessons I have learned from him, the things he has taught me and the way he has lived. Some days, he is our angel and we talk about how he has been sent from God just for us. We talk about how blessed we are to have had the opportunity to walk through life with him and how we wished other people could have a moment of this experience. Then, there are days when we wonder where he came from, why he’s acting a certain way and how do we handle what is happening before our eyes. In these moments, we see the struggle deep within him, his desire to do what we call ‘right’, to act appropriately, to respond how we want him to respond but because of the way he has been created the struggle lies in this this place. These are the times when this gentle giant, this angel who was sent from above needs our care, our love and our acceptance.

I could go on and on about the joy he has brought to our lives and his amazing nature and his deep sense of knowing and understanding that doesn’t translate into school grades or through the written or, at times, even the spoken word. His understanding is deep and his expression of that understanding at times throws the ‘EQ’ balance off the charts.

Today, instead of me writing about his impact on our lives, I have chosen to allow the words of another whom he has touched to bring expression to his being. She’s not a family member but she has been brought into the family through Peter and his love for her and his deep knowing that she is a person to love and to trust. Her name is Lori and outside of our family she is perhaps one of the most influencial people in Peter’s life. I am choosing not to respond in words to the ‘One Pissed Off Mother’ but rather by using the life of another and the experience of another who has chosen to see beyond what she doesn’t understand {in terms of how Peter was created} but has chosen to step over her own insecurities and the ‘unknown’ within Peter and she has found a beautiful relationship that has changed her life. I hope you enjoy her story about Peter.

MY FRIEND PETER by Lori Perra
I have a very special person in my life. He has taught me so many things that have helped me to become a better person. He has made me laugh and cry and practise my skills of tolerance and patience.

Peter has Down Syndrome.

I have known Peter for many years, but it has only been during the past two years that I have developed a relationship with him. What started as a job has turned out to be one of the most rewarding experiences of my life.

Job coaching is what brought Peter and I together. For a few hours each week, we go to his place of employment and I instruct him on how to do his work. He is such a diligent worker and it does not take long for him to master the tasks assigned to him. Then it is coffee time!

Coffee time is what he looks forward to the most. This is our time to chat about whatever comes to mind. Peter never fails to ask about my husband, my children and my cat. He always asks how my day at work went and never fails to ask how his nephew is, who attends the school where I work.

Peter loves music and will start to dance when he hears it. He doesn’t care where we are or who is watching. His face lights up with the pure joy of it. Peter has taught me to dance like no one is watching. Everyone should try this. It is the most exhilarating feeling!

He has taught me not to be afraid to tell people how I feel about them. Peter is very quick to tell people that he has missed them, that he likes them, that they make him happy, that he loves them. He quite often will tell me that I am beautiful but he will also tell me when he thinks that I need a haircut. He is so open and honest that it is refreshing to have a conversation with him.

He is also very compassionate. When my Mom was ill, he always would inquire about her. When she passed away, he brought me flowers and hugs. Sometimes he will ask me if I think about her and what I am remembering about her.

Occasionally, we have a date night. He will get dressed up and he is the perfect gentleman. He opens doors for me, pulls out my chair, inquires if I am enjoying myself and of course, compliments me on how beautiful I am. For weeks after he will talk about what a good time he had.

Peter has been raised by a very loving and supportive family. I know it is through his family that he has learned his conversation skills, his strong work ethics, his sense of humour and his compassion. I am truly blessed to be able to have Peter and his family in my life. I believe that when we surround ourselves with positive people like Peter and his family, we remain strong, happy and positive ourselves.

Thank you Peter for being my friend!
Lori