Spring brings a lot of great things like pretty flowers, blooming trees and birds chirping away….GROWTH! LIFE!
It also brings around something lovingly called, IEP season. Alright, lovingly is a bit of sarcasm because the one adjective NEVER used to describe an IEP meeting is lovingly. For me, IEP time is one to focus on the growth that Elizabeth has shown all year, the new things she has accomplished and the focus/plan for future growth.
Kind of very similar to the flowers, trees and birds…. GROWTH AND THE CELEBRATION OF IT.
So what makes it hard is when the focus is NOT on the growth but on the voids or delays that our special needs children have. I have always been one to celebrate any and all successes that Elizabeth does. For those who do not know, Elizabeth is my 21 year old daughter who has Sensory Processing Disorder (SPD) and dyspraxia. She has amazing strength, kindness and humor throughout all the work she has had to do in her life!
So because I celebrate the little things, I want others to understand and do the same. I fully understand that the entire IEP team will not stand up to applaud her correct use of a key in a lock. (With her dyspraxia, this fine motor skill success is huge and takes a lot of work to perform) but you get the point.
We believe in our children and want others to do the same. I know it is hard for those who do not have a child with special needs to fully understand my journey or your journey. They will struggle to comprehend that the little successes can fuel our hearts for days or that our child finally learning to ride a bike at age 15 made our hearts leap. That the fact it was at 15 years old does not matter as much as the fact that they did it!
So with this in mind, I have to share an encounter I recently had with a person I had not seen in over 15 years. But who had known us when Elizabeth was non-verbal etc. She apparently follows our story via social media and asked me about Elizabeth.
I answered her. I told her about the college program she was in as well as the other high points of her life. I told her these things with excitement and pride because I am feeling both these things as I was talking.
In response, she looked at me with her eyes so very wide open, mouth open and said “Well, that is nice”
I saw such surprise in her expression, probably because of when she last saw Elizabeth, which I thought was great.
But is was the tone of her voice that made me feel sad because there was a certain tilt of the head, change of her voice and slightly nod when she was talking….it was pity or feeling sorry for me and us, that she was showing.
We talked about some other things for a few moments and I wanted to talk to her about how I was feeling about the pity, but she had to go. So I was left with a lot of feelings. One of the big ones was my wonder at why there was not simply a sharing in the joy of growth, and achievement?
I hope I speak for those reading this as I share the following to those who do not have a special needs child:
First off, thank you for asking. It means a lot.
Please ask about my special needs child. I want to tell you because I love my child and am proud of her hard work. I don’t expect you to understand completely, but I want to share.
Please just talk. I think those who ask feel the need to find the “right” words to say in response. Please lose that feeling and simply talk…person to person. I know you don’t understand my world completely and that is okay. I appreciate a simply honest conversation.
Ask a question. I know that a sensory diet is not something most people know about. So please ask if you don’t really follow what I am saying. I am happy to answer.
And lastly,
Please do NOT show pity. It does more harm than good and leaves us with a lot of emotions to settle in ourselves once you are gone. We know that our children are working hard on goals and skills that come easily to others. The looks of pity only hurts, not helps.
I would be interested to hear what you think of my thoughts. It was a bit of a tough day!