Wednesday, September 17, 2014

The silent cry, can you hear us now?

The faces of Autism are our children and we love them. We work tirelessly to get what our children need. But you do not see the faces behind those Autistic children. For the most part we hide, trying to make sure it is our children that get the attention and the help they need.

No one expects an athlete to compete at his best if he does not rest and take care of his health. No one wants a doctor to preform an operation if he isn't well rested and in a healthy state of mind.  We spout things like if mama ain't happy ain't nobody happy. We say it for a reason, if mom or dad is not taking care of themselves how can they best take care of their children? What happens when taking care of your child is the very thing that causes you to neglect your health and well being? What if the care-taking of your child is so all consuming there is no rest or peace.

I am in a place now that I am able to meet my needs physically, emotionally, and spiritually. When Ike was young that was not the case. I was a mother I never thought I would be. Desperation, depression, and anger were my daily companions. But we do not talk of these things, they are ugly and uncomfortable. No one wants to know how often I lost control and screamed at my child or curled up on my bed while he watched hours of television because I couldn't be a mother one more minute. It is my weakness and my shame but also my truth. Parenting a child with Autism is hard.

I have been following closely the Kelli Stapleton case recently. If you don't know about it I invite you to look it up. You will find people willing to voice their opinions on both sides. I feel for this woman and her family who are in an impossible position. Why did no one notice she was at the end of her rope and help? Most importantly I am sitting back and watching. What is society going to do? They have been forced, for a moment, to hear the Autism caretaker's cries. Cries of frustration, helplessness, sorrow, determination and pleas. Many will look the other way and cast judgements. It is nothing new to us. But we live in hope that even a few will hear and help.

We had the same hopes and dreams for our children when they were born. We have had to let go of many of them but in the end the most important ones are the same. We want our children to be happy, to be accepted, and loved. We need help. We can't do this alone. This is our reality, the one we live with everyday.

Tuesday, September 2, 2014


I had the privelege to attend a lecture given by Temple Grandin last week. So many wonderful nuggets of life wisdom were shared. I was impressed with her ability to stand in front of a large crowd and without show of nervousness teach us profound truths she had learned in her life. I think the most comforting and profound wisdom conveyed to me personally was watching her and noticing all of the similarities she shares with my Ike. Looking at her gives me great hope for my son's future. I don't know anything more valuable than that for a parent.

While listening to a TED talk on making mistakes this morning an analogy was drawn to music. That playing a note that may not be in the song score or key that the group is playing can be seen as a mistake. The speaker challenged that it could also be seen as a missed opportunity. That the mistake did not happen when that particular note was played, but in the way the musicians responded to the note.

 They went on to play an example of both instances. Showing how when the band did not respond to the note and continued to play as usual or stopped it was awkward and the note stuck out. Then they showed what happened when the musicians welcomed the new note into their music and worked to adapt and blend with it.

Hearing the differences astounded me. The abrupt and awkward first example and then the new and interesting second example.  All I could think about were my children. My children are the notes that don't fit into the music as it is written. They are the F# in the key of C. But when trained musicians improvise and work my children into their piece it becomes something new, interesting, abnormally breath taking.

I've watched this happen. When an adult or child takes my children's abormalities and uses them as a strength it is awe inspiring to watch. It happens so rarely. Most of the time my children are the bad note in the song, even more glaring because many stop the song to point it out and ask it to be fixed. You can't fix an F#. It is what it is.

To those with F#'s that read this, find those that are willing to work a song around your child. It will be hard but the only way our children will see their real value is by surrounding them with musicians who can and will improvise.
There are no mistakes on the bandstand