Fueled by an email from Tanya Roberts, I am pursuing help for my son with renewed vigor. Truth be told, I’m not just interested in help for my child at this point. Things need to change for all of us who have children with Autism. So, I am the thorn because someone needs to work to change things.
Autism statistics from the U.S. Centers for Disease Control and Prevention (CDC) identify around 1 in 88 American children as on the autism spectrum–a ten-fold increase in prevalence in 40 years. Careful research shows that this increase is only partly explained by improved diagnosis and awareness. Studies also show that autism is four to five times more common among boys than girls. An estimated 1 out of 54 boys and 1 in 252 girls are diagnosed with autism in the United States. ~Autism Speaks
With this being the case, why is it so hard for us to get help? I don’t have a simple answer. I think it would take having someone in office who truly understands the impact these special and wonderful children have on our lives. Someone who knows how you can love your child so much and yet feel lost when trying to figure out how to help them. Someone who gets that it takes more than Speech Therapy, Occupational Therapy, and interventions at school to help our children. We need help at home, too.
Being a Special Education teacher, I am fortunate enough to know some strategies in dealing with my child. We have learned how to get around his meltdowns. We’ve learned when enough is enough, and when it’s time to leave a social gathering. But is that enough? I don’t think so. As much as I love my child, his inability to deal with social situations has a huge impact on my well-being. It wouldn’t be fair to attribute my depression to him, because my depression and anxiety issues existed long before he was born. But feeling socially isolated because I have to be careful about what situation I introduce my child to makes it hard. I love him like you wouldn’t believe, but it would be so nice to have someone help us figure out how to get him through social gatherings without him harming himself when he’s frustrated because (for example) he wants the basketball all to himself.
He also impacts my ability to do my job. We try not to bring our home lives to work with us, but the truth is, when my cell phone is buzzing, I have to check it. I never know when the school is going to call and tell me he’s having meltdowns so bad that I need to come and get him. He’s adjusting and those meltdowns are less frequent now, but they happen. And when they do, no one can go pick him up but me. In addition, I cannot have meetings after school unless I’ve made arrangements in advance for someone to watch him. A lot of teachers can have their children wait outside their rooms/offices during meetings and they’ll be fine. Mine won’t. A big part of my job involves meeting with parents and other professionals to assist my children. I need help to make this happen.
So, yes, I’m fighting. I’m fighting for more. I’ve been fighting this battle for almost a year now. I’ve finally gotten fed up enough that I’m going to elected officials to ask. They are there to help their constituents (us), and I’m calling on them to do their job. I mean, really. 1 in 88?? That has to rate on their list of priorities. Lack of funding is inexcusable. And perhaps they should pay the people who are called upon to work without children for “Personal Care” and “Respite” a rate that’s equal to the work they’d be doing with our children, and then they’d get more providers.
It’s time to fight, ladies and gentleman. Start contacting your representatives. Not just in your state, but those elected in the federal government. They need to hear our voices.
Just so you can get an idea of what has fueled my fire, here is an excerpt of the email Tanya sent me today:
The reality is no one can make someone work with your son and unfortunately, there are many providers out there who view services as dollars and will not engage the more challenging clients if they do not have the higher dollar services to go along with it. This is the cold, hard fact.You will have to be a thorn in someone’s side to get what you need. You will have to be very vocal. You will have to use your intelligence to fight for your son as no one else will.It is incredibly unfortunate and I understand as much as I can. I am not in your shoes and loving the child who needs so much. But, I have been there with others like you. The difference is you are clearly very intelligent and have started reaching out. Please continue to do this as it is the only way you may get some action. No one will respond if you are not there questioning.I don’t feel like I have helped you much, but I have thought about it and will continue to do so. Should I have the chance to interact with others who may be of assistance to you, I will share their information with you. If you learn anything or gain any movement, please let me know that as well.I wish you the best and know I will continue to be thinking of you and your family.
Tanya, you have helped me more than you know. I am someone who was on the brink of giving up. You have renewed my resolve to get answers.
So yes, I have contacted Kay Hagan, Richard Burr, and Commissioner Dacey. Yes, I have filed a formal complaint about this long, terrible process we’ve gone through. My child matters.
And if I have to be a thorn, I will be.