Out in the yard on Sunday, Katie had a typical seven year old moment. She and Brooke were playing with a parachute and Katie had wrapped herself in it, shutting Brooke out. When Brooke tried to work her way in, albeit none too gracefully, Katie grabbed it away from her and shouted at her in a huff, ‘Well now you’ve gone and ruined it all, Brooke.’ I looked over and said, quite calmly, ‘We don’t speak that way to each other in this house. You’re done with the parachute.’
She almost immediately began to cry. I called her over to tell her that I understood her frustration but I explained that the lack of respect that she had shown sister was unacceptable. I asked if she was crying because she was no longer allowed to play with the parachute. “No, Mama,” she said. “I’m crying cause I just feel really sorry. I didn’t do the right thing at all and I feel so sorry now and I don’t know what to do.”
My smile confused her. I had to explain that I was smiling because feeling that way meant that she is a good person who made a regrettable choice. It also meant that she was learning something. I told her that feeling like she didn’t do the right thing meant she had the chance to a) apologize for it b) make it right and c) figure out what the right thing would have been so that she could make sure to do it next time. Thankfully, although she may not get a do-over, life will likely give her lots of other chances to do what she now knows is right.
When I was a little girl, my dad was the principal of a small town middle school. I loved going with my dad to his school. As the principal’s daughter I was something of a curiosity to the kids, and I was always treated very well by his staff. There was one person, though, who stands out in my memory of those years. His name was Al Primrose and he was the school custodian.
Whenever I would visit, we would make a special trip to see Mr. Primrose in the cluttered utility room off the cafeteria that served as his office. In my child’s mind, he was an old man, though heaven knows he was probably only in his fifties. Remember when people in their early twenties were really grown up and anyone over thirty was OLD? I’ll never forget his neatly pressed dusty green uniform or his worn shoes, but it was his relationship with my dad that I will always remember most. They had tremendous respect for one another and it showed. Each time that my dad would take me to see him he would tell me, as though it were the first time he’d said it, ‘Al is the one who really keeps this place running, Jessie.’ Mr. Primrose would smile and it lit up his whole face when he did. We’d all chuckle a bit and go on our way.
Every Christmas from the time I could remember, Mr. Primrose would send me a hand written card and enclose a twenty dollar bill. My dad would explain just how much that meant coming from him and I think I did understand that, even then. I was very grateful for his affection.
One year when I was around nine, Mr. Primrose’s wife became ill and passed away. My dad told me that he planned to go to the funeral to honor her and to show his support for Al. He asked me if I felt that I would like to join him. I remember wondering why I would go to the funeral of a woman that I wasn’t even sure that I had ever met. I asked my dad to come into my room in the morning before he left and I would decide then. When he did, I chose the warmth of my bed over the prospect of sitting in a room full of grieving relatives of someone I didn’t know.
When my father came back at the end of the day, he told me that three people had been at the funeral. Three. I was stunned. And hurt. And sorry. Terribly, terribly sorry. The better part of twenty years later – ok, fine, thirty – I have not been able to completely forgive that nine year old girl for being so selfish. My presence at Dorothy Primrose’s funeral would have meant one third more people in attendance and that will always haunt me.
But I learned something incredibly valuable that day. If someone makes a difference in your life (or your child’s), tell them. If someone has been there for you, show them. If someone who matters to you is being honored, be there to wink at them from the cheap seats.
Tonight, I went to a party to honor someone very special in the lives of all of our children. I didn’t have the time. I didn’t have the energy. But I made it and I found it, because she always did.
As a parent in general, and a parent of a child with special needs in particular, there are so many people that have an impact on my children’s lives, in ways both big and small, direct and indirect. There are those who advocate, those who teach, those who dedicate their lives to finding the missing piece of the puzzle, those who provide specialized therapies. There are those who show us how to reach Brooke when we’re at our wit’s end and those who give up their nights to show us how to get by in a world not made for her.
There are occupational therapists and physical therapists, behaviorists and all the other ‘ists. There are inclusion facilitators and administrators. There are the compassionate doctors who refer to children with autism as ‘our kids’ (Dr. C, you know who you are!)
There are those who run foundations and those who create them. There are the teachers who cherish and value my babies and who work tirelessly to find ways to include Brooke even when it seems impossible. There are those who go out of their way to be there for Katie and to make sure that she knows that she is not alone.
There are the strangers in restaurants who do not judge us when Brooke is melting down because she is overwhelmed. There are the other moms and dads who ‘get it’ and the others who take the time to try and get it. There are those who walk to raise money and those who walk to raise awareness and those who just walk to be there for all of us.
There are the parents who teach their kids to be sensitive and tolerant and the dear friends who quietly ask their sons and daughters to keep an eye out for Brooke on the playground. There are those who accept awards and those whose names we’ll never know.
There are the members of our extended family, who embody love and support. There is my quietly heroic husband, who does more for me and for our children than I can possibly ever tell him. There is you, who care enough to read what I write and to learn about our experience. You all have an impact on my life and my family’s life. I am so thankful and so blessed.
I’ve decided to start my campaign of thanks with Bob and Suzanne Wright. Then it can be your turn.
Just 3 years ago, the Wrights’ grandson, Christian was diagnosed with Autism. Rather than wallow in their sadness or retreat into their grief, they rolled up their sleeves, took out their rolodexes and went to work. They created a formidable organization called Autism Speaks that today can be called no less than miraculous.
In 2007, Autism Speaks committed an unprecedented $30 million in new research funding. They were the driving force behind passage of the Combating Autism Act, through which congress approved the appropriation of $162 million for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC) and Health Resources and Services Administration (HRSA). They have facilitated previously unfathomable strides in research.
They have fostered awareness, through the creation of World Autism Day and Autism Awareness Month as well as a Public Service Announcement campaign that garnered over $80 million in donated media. 2008′s numbers will far, far exceed those of 2007.
I could literally go on for days detailing all of the amazing programs that Autism Speaks has made available for families like ours, and those that are just being diagnosed. They have created and implemented far too many invaluable resources to try to list here.
I am in awe of what the Wrights have accomplished in so little time and I am grateful beyond expression for their efforts. Below is my best attempt to tell them that.
Dear Mr. and Mrs. Wright,
I wish I had the words to thank you for all that you have done.
Through Autism Speaks you have turned helplessness into hope, ignorance into awareness and fear into action. You have transformed sadness and grief and isolation into community and that community into comfort, information, validation and power.
You have turned apathy into passion and harnessed that passion to create an unstoppable movement toward a better life for our children. You have inspired people to teach, to learn, to seek answers. You have taught us all how to move mountains. You have literally changed our lives as you’ve changed the world for our wonderful children.
I am grateful for and humbled by all that you have done, all that you continue to do, and all that you inspire others to do. You prove every day that our will and our work can change the world. For all this, I thank you from the bottom of my heart.
Ok, it’s your turn. Pass it on.