I’d like to thank Danielle, and the Board of Hope Autism for giving me this honor. I means a great deal to me to be here with members of the autism community. This community has embraced my family, and it is a place where I feel very much at home.
I’d also like to thank all of you, for being a kind and supportive audience; because I am a first time honoree, and this is my first speech.
So here goes:
Like Brian, who spoke so eloquently, and lovingly about his son, Christopher, I would like to tell you a little bit about my son. So you will hear about two remarkable young men tonight.
I have a 14 year old son named Liam — I hope for him every day. I hope for him fiercely. I hope for him in the very special way that the mother of a special needs child hopes.
I hope – that he continues to grow up handsome and funny –a truly loyal friend – and maybe, even a wonderful, loving husband some day – like his dad.
I hope – he grows up to be an avid student and learner, like his big sister. Not just an academic student, but a student of the world, who cares deeply, and gives back to the community, like she does.
I hope – that as he grows up along side his little sister (whom Liam “affectionately” calls Pesky – short for Pesky Little Sister) that he maintains a sense of fun, and a love of life, like she does.
I hope for all of this, and so much more. What I know, is that Liam is growing up with autism, and that he’s doing a terrific job.
Liam’s success stems from the first place that truly gave me hope, the Newmark School, in Plainfield, where Liam is currently in 8th grade. In addition to changing Liam’s life completely, Newmark taught me that I am a good enough mother.
They taught me that I can do everything I need to do to ensure that Liam grows up well educated, with appropriate social skills and with the tools he needs to be successful in his life.
The 2 founders and directors of Nemark are here tonight – Cindy Allman and Regina Peter. Cindy and Regina, I thank you from the bottom of my heart – there is not a chance that Liam would be where he is today without you, and without Newmark.
But Liam will not always be at Newmark. He is rapidly becoming a young adult – and this is happening a bit more quickly than I might like. I always swore that I refused to go through puberty with Liam, and yet, here we are!
Hope Autism gives all of us hope for this new challenge that is young adulthood. Hope Autism is one of the few organizations that is focused on what happens when an autistic child becomes an autistic adult.
I am sure that most people outside of our community have no idea what our children face as they grow up.
But those of us in this room know that help comes from people who understand the challenges .
Who have the skills and determination to overcome them – and who never, stop hoping.
So please, all of you, continue to hope, for Liam, for Christopher and for all our children and young adults living with autism.
Hope – that we can help them to grow up strong and confident.
Hope – that they will have friends and a support system to guide them, and love them.
Please, hope – that they will be happy.
This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of “Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.
I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat. Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him. I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.
We are all really good at shoveling these days. I pictured handing the shovel to Nat and seeing him push it down and push the snow aside. No problem. But it used to be. Such tantrums! He couldn’t be outside with us. And if we left him inside, he’d freak out in there, watching us working outside. The horrible feelings I had, knowing I couldn’t be inside or outside. There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.
Now he shovels snow willingly and competently. Yet another skill, another feather in Nat’s cap. How did this come to be?
We made him do it anyway. We lived through tantrums. We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly. Nat has been exposed to a lot of activities. It’s as simple — and difficult — as that. The more Nat experiences, the more he is able to do. As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places. It was almost always really, really hard. We tried a Cape Cod vacation: terrible. Each year, not as much. Stayed with my parents: it got better. Switched to the ocean, rather than the bay side and brought boogie boards: success. Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it. Not all of it, but enough.
Challenger T-ball; failed. A year later we tried Special Olympics gymnastics: success. But bumpy success. Nat sometimes slapped people or had tantrums or spaced out. We stuck with it. Or rather, Ned did. I’m the coward of the two of us. I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch. I think that even if you are a single parent, you should find a way to have a second person around sometimes.
Vacuuming. Food shopping. Parties. Shoveling. We took Nat places. Even for abbreviated visits and outings. Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire. Stored data. Information he could draw on for the next time. If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter. And that is the most fertile ground there is.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Episode 216: Amazing Andy and His Wonderful World of Bugs gave us a lot to think about this week. We can discuss the pressure and stress of planning a birthday party or even Max’s meltdown when Gaby changes her sticker rule.
But what really struck us, was Zeek’s transformation in the way he saw Andy, the party planner. He was put off at first by Andy’s behavior. Why was he refusing help and not allowing people to touch his things? Once Adam explains that Andy does in fact has Asperger’s he is impressed. It was eye opening for him to see that he was living an independent life.
For those families who are preparing for the journey from adolescence into adulthood, please check out our Transition Tool Kit. It is an extremely useful resource.
We love the ‘Experts Speaks‘ portion of the ‘Parenthood‘ website, and we think it is important to share with you, especially this week. Here Roy Q. Sanders, M.D., shares his experience in learning to ‘let go’ of his adolescent son.
Our son Frankie will be 15 in May. Not a day goes by without my thinking about his future. The discussion over the past month has been whether he will go to our public high school or not next fall. He is absolutely sure that the time is right for him to “move on.” Yesterday, while we were cleaning the chicken coop (birds are his thing), he told me, in his own peculiar sounding voice, “I know I have autism. I know I am different. I am okay with that.” When I expressed my concerns about his not having the support that he has now at his current school (a specialized program for teenagers with autism) he told me, “You are worrying too much. You need to let it go.”
I had to smile. How many times have I told Frankie “You need to let it go”?
I suppose it’s difficult for any parent to imagine a child all grown up and taking care of him or herself. For those of us with children on the spectrum – and even though we worry about it every day – actually imagining a kid like Frankie all grown up and taking care of himself and being “okay with his autism” is an almost impossible leap of imagination. But we do know that our children will grow up, and we know each of them will live their lives as independently as they are capable with the tools we have given them.
Here’s another thing Frankie told me: “Don’t worry, you have taught me how to do this. You have taught me everything.” Like Adam in this episode, I tend to get so wrapped up in the day-to-day struggles with Frankie that I forget how much he is learning and how much his (and our) hard work are paying off. I often don’t see that we are making real progress in helping him grow into an independent adult with his own life, his own interests, and his own difficulties and quirks – just like Andy the Bug Man.
What I have seen with Frankie’s typical friendships is the same sort of understanding and support that Zeek gives Andy. Frankie’s friends are all ready to jump in and help. They “have his back.” Because they understand Frankie has autism and that he’s “different,” they do what any good friends would do: they help him out, and do what they can to structure the environment to give him room to be himself in all of his wonderful differentness.
For years I have counseled parents, teachers, patients and all sorts of social groups on how to look beyond any disabilities and see the abilities. I have advocated for inclusion. I have challenged us all to work to move beyond acceptance and toward embracing our children’s differences. I have believed (along with Jennie Weiss Block, author of “Copious Hosting: A Theology of Access for People with Disabilities”) that welcoming and embracing people with disabilities brings a theology of liberation – not only to the disabled but to those of us who are “abled” as well. We are all blessed. Now I find myself on the horns of a dilemma. Do I opt for safety, security, nurturing and growth in a very secure environment for the next few years before “allowing” Frankie the path to more complete inclusion… or do I walk with him now into the messiness of life in the “real world” and all the growth, pain and joy that this choice entails? Do I “allow” him to liberate himself while bringing liberation to those around him? Do I restrict his willingness to give himself or the willingness of others to give to him?
In reality, the choice may not be quite so stark, but it sure feels that way. This episode has been a great reminder of not only how our children’s passions can give them a life of working and loving, but also of how painful it can be for parents to “let go” and “allow” their children to risk the pain, but also experience the joy of living their own life.
Written by Roy Q. Sanders, M.D.