Published on: July 21, 2015
Wow how far we have come in 10 years. Back then I worried if Hayden would speak. Now there are times I would like a little peace and quiet. Yes, I still wonder if he will be able to live independently or go away to college. But I know he can certainly live at home and commute to college, if that is what he chooses to do. I know he will be able to make a choice and tell me if he wants to go away or stay at home. If I had to bet I’d guess he will be done with school, and more likely will fill his days either working or participating in his hobbies.
But we still have some time between now and then. I’m grateful to many more caring individuals today who have helped Hayden grow into the sweet kid he is today. He loves building legos and quoting the Frozen movie. Thank you to everyone who has helped him share with us that red is his favorite color, and that he does not like pizza. Each of you have helped us along this journey which looked bleak back then but has opened my eyes to celebrating each of the little accomplishments that make my boy who he is toady, and more importantly who he might become in a future with lots of possibilities.
May 19, 2005
Dear Friends at Kennedy Krieger,
It is late and I should be sleeping now. Nonetheless, I have gotten out of bed to write this message.
Today we had our next to last Parent Training. We have been coming every Thursday morning for the last 5 ½ months. In the beginning I had no idea why, other then it was a requirement of the program. For those of you who may read this and not be familiar with the program, it is an early intervention study for children with autism. My son who is 33 months was recently diagnosed with autism. At the time he began this program he had not been diagnosed. He had a diagnosed speech delay and a possibility of being on the autism spectrum.
I guess that was part of the problem. It is almost easier if he had cancer of heart disease. If he did, the physicians would diagnosis it, and then proceed to tell us what the course of treatment was going to be. But with autism everything is different. Clinicians do not want to rush to a diagnosis. As I have learned the earlier parents know the better chances their children will have to improve.
Having a diagnosis helps, but having the parent trainings is invaluable. Let me explain. When we started, we were clueless. All we knew was our son was not talking and that our older daughter had been speaking for over a year at his age. All we wanted was normalcy. In most ways Hayden appeared to be a typical child to us. He liked TV, kid’s foods, being outside and he loved to color. But he did not speak. He never said, “I want juice.” He barely said, “Mama” or “Dada”. At the same time I was worrying about Hayden, our daughter was transitioning from the terrible two’s to the tough three’s. I would joke with my wife that she should not worry so much about our daughter’s transition. I laughed when I told her that our daughter would still be a teenager and want to curse us, and that she would still go off to college. My wife was not amused that I was making light of her concerns, even though I was trying to assure her that all kids go through things and come out fine.
Then it hit me, the words “Autism Spectrum Disorder.” All the jokes I made were not at all funny. Our son might never speak, graduate from high school, let alone off to college or get married.
All any parent wants for their children is everything. We want them to be happy, healthy, smart, popular, well adjusted, and able to do whatever they want to do in life. We want our children to have choices, to be doctors or lawyers or CEO’s, or a park ranger is that is going to fulfill them. It might be nice if they were even President of the United States, or the next Bill Gates or Martin Luther King. The Important things are being healthy and having the opportunity.
When I walked with my wife and son to the parking lot after receiving our diagnosis of autism, I reached for the keys in my pocket and thought all the dreams I had for him till that moment were impossible. I did not know if he would ever speak. I did not know if he would have to be institutionalized. I did not know anything about autism. At that point it became about supporting my wife. While all of my dreams for Hayden seemed to get further behind us as I drove us home. I said what I could to be hopeful as I watched my wife’s eyes fill up with tears. I took what I could from the ambiguity of the doctor and spun it the best I could to give her some comfort. I took what I could from the ambiguity of the doctor and spun it the best I could to give her some comfort.
While our story seems sad, it is really a positive one. From that point of total devastation and hopelessness our lives have been forever changed. Our doctor had told us about Dr. Rebecca Lander and an early intervention study she was conducting and suggested that we try to see if Hayden could join that program. Fortunately for us he qualified.
The change for him and our family have been monumental. Hayden is speaking. He has over 100 words in his vocabulary. He can imitate almost anything we say and while he may not understand everything he is learning. He says “Hi” and “bye,” asks for jellybeans, and gives us hugs and kisses. Today on our way to school, he saw a truck that had a picture of Ritz crackers on it and spontaneously said “cookie.” No prompting and no pointing from us, just cookie. Absolutely amazing.
Six months ago I was worried that he would never talk. Six months ago I was worried that he would need care for the rest of his life. Today, I have hope that by age 6 he could start 1st grade in a typical classroom and no one think that at age 2 he was Autistic. I also have hope for college someday. But I now also know that it’s going to be okay if he doesn’t go. I know that he loves me and his mother. I know he is a very happy child and I know that he won’t need to be institutionalized. I know now that even if he does not improve such that he comes off the Autistic Spectrum, that if we keep working with him and loving him he will always be a productive member of our family. He has the potential to what I once dreamed he could.
Words cannot describe how low a person sinks when all of their dreams for their child are dashed. Nor can they ever give the true level of thanks and gratitude I feel to all the people who have helped restore that hope once again.
I would like everyone involved with the Early Intervention Research Program to understand that they are outstanding people doing extraordinary work. That each of you has in some huge way forever changed the lives of my family. Hayden has made outstanding strides in his time with you. We as parents have learned about his condition, what our options are, and how best to help him. More importantly we have learned that Autism is something we can deal with as a family, if not overcome. You have given us the power and knowledge to be able to teach and work with Hayden. You have given us the power and knowledge to find his next program. You have given us the ability to deal with the school system and county programs to get what we need. You have turned us onto community resources that will help Hayden to continue his growth. You have given us not only the hope that Hayden can be all of the things we had hopes he could be but the knowledge and power to help him accomplish it.
For all of that, I can never thank you enough or repay you for what you have done. I hope you realize that you are saving children’s lives. That in my eyes there is nothing greater in this world then giving life to a child and hope to his parents. I consider you to be saints. I hope that you can keep giving as much to other families as you have given to mine.
I thank you. Please keep up the extraordinary work that you do.
All my best,