I feel like I know you all pretty well now. You’ve been in my home with my son for almost a year. Four, five, six days a week, you’re here. You’ve seen me in my pajamas, watched me do laundry and cook dinner. I spend more time with you than I do with my friends or family. We chat, I sit and listen to the sessions, I ask questions.
But mostly, I watch. I watch you and my son, and I try to soak up what you’re doing, gauge what works and what doesn’t. This is your job, but this is very, very personal to me.
I know you went through a lot of training for this job. Some of you have advanced degrees and letters after your names. You speak in acronyms, take data, and analyze my son’s behaviors. You are competent and knowledgeable and educated. You are able to develop lesson plans, implement them in effective ways, and move my son from skill to skill. You are really good at your job.
But I wonder if you know what it’s like to be me. I wonder if you have given any thought to what it is like to parent these children you work with every day.
I’ll tell you that as a parent, it is tough to get your head around the fact that you have a child you can’t help. We special needs parents are forced to rely on others to provide the tools our kids need to reach their potential. “Here. I am handing over my heart and my soul, my absolute everything. I don’t even understand exactly what it is you do, but please make it your best. Please help my child.” It’s debilitating, really. You can help my son and I can’t. I wonder if you understand the importance, the weight of this.
I wonder if you know how much of a toll this takes. Did they happen to mention the tremendous strain we parents are under in all that training? We’re fragile. We’re scared. We’re struggling. We’re hopeful. We’re grateful. We’re really, really tired.
Do you know how much we have to fight for our kids? The biggest surprise to me in this special needs parenting world was how much I have to advocate for my son to people who should be on his team. Schools, therapists, doctors, insurance — you name it, it was probably a battle. Do you think I don’t know that you roll your eyes when I call? I do. Trust me, I would rather be the fun mom, the awesome mom, the mom that everybody likes. But my son can’t afford that mom, so I am the mom who gets him what he needs. It takes an awful lot out of me, and some days, I don’t greet you at the door with a lot of energy. What you might think is crabby is really just empty.
Your training should have included how much this therapy costs. I’m sure it didn’t, but I’d like you to understand the sacrifices we are making to pay for all of this. You are worth it, I have seen it with my own two eyes, but it means we cut and save. Instead of a vacation, we pay for medical bills and insurance premiums. I work from bedtime to 2 a.m. so I can stay involved with what you do when you’re here, in my home. So I can be a part of my son’s progress.
I wonder if you know that placing this responsibility in someone else’s hands is terrifying. You are tasked with seeing my child’s potential, and reaching through thorns and brambles, through cuts and scratches, and bringing all that potential to the surface. You are tasked with nothing less than changing my son’s life. This might be the most important thing you ever do.
I want you — no, I need you to understand this. I need you to understand that every morning I wake up and hope for a breakthrough, and that every night I go to bed worrying about my son’s future. This is a lot of weight to carry. I have handed you a small portion of that weight. I need to know that your shoulders are strong enough to carry it.
Autism Speaks is working hard to help wonderful moms and dads and families every single day. We made tremendous progress in 2014:
- The ABLE act passed, which was the culmination of an eight-year campaign to gain Congressional approval for tax-free savings accounts to help individuals and families finance their longterm disability needs.
- The Autism CARES act became law, which dedicates $ 1.3 billion in federal funding for autism over the next five years.
- Autism Speaks is working to change state insurance laws to require private health insurance policies to cover the diagnosis and treatment of autism spectrum disorders. Currently, 38 states have enacted autism insurance reform laws.
It was a great year and we’re working hard to make even more progress in 2015.