Seems like forever ago when I wrote this post for the awesome autism moms out there and this one for the dads. And now my story has been featured on The Mighty. Honestly, I want you all to feel awesome as parents raising children with autism, or just being parents in general. Parenting’s a hard job. Someone commented that most days they feel inadequate as a mom…like she’s not doing enough. My son was diagnosed with autism in June 2011, and that’s when I started blogging about our journey. I felt lost and knew there were more people out there who also didn’t know what to do or what was best for my child. Some days, like today, I still feel just as lost as I did back then. To the lost parent, wherever you are, I know you. I’m lost too.
One Lost Parent, Trying to Find a Way
In the past month, I’ve done more than I ever imagined I’d need to do in order to get help for my son. I imagine he feels just as lost as I do. Knowing that makes me feel sad. Can you imagine not feeling like you belong? I mean, he gets moved from daycare to daycare, worker to worker…and no one keeps him long.
It’s not because he’s not lovable. He’s totally lovable. But then he gets overstimulated or frustrated. I’ve asked to work with children around him to help them understand him. Offered training to employees, to other parents, to children…to help them know what to do when he gets upset. Nothing we do guarantees he won’t blow up. That would be like saying that if you play a happy song when I feel depressed, I’ll always feel better. I won’t. He won’t. We won’t. But it helps to have strategies.
So, where are we?
Currently, we’re out of daycare options. My son can’t go to Children’s Church anymore. And I can’t leave the house without fearing for his safety. He runs when he’s ready to leave. When overstimulated, he lashes out or runs off. I’m scared and lost. And it’s not that I haven’t tried to get help. I’ve got eight pages of documented phone calls I’ve made in the past month alone. The phone tree is a long one. Agencies direct me to other agencies who direct me to other people, none of whom can help us. Sometimes I make seven phone calls without a return call, leaving a message each time. People ask me if I know about a variety of services in the area, but none of those places help me. Meanwhile, behaviors escalate, even as I use strategies like visual schedules, timers, if-then statements, etc., at home.
In truth, I believe he’s internalized all of this stuff and it comes out as aggression, elopement, and exposure. He’s continuously rejected by his peers and by facilities. As a result, it’s difficult to take him anywhere. When the going gets rough, he does everything he can think of to get going.
Am I enough?
As his mother, I can’t stop trying with him, but no one else lives by this rule. Although he should receive services under state funding while on an endless waitlist to receive better services, no one serves him. Consistent support ended in January. Honestly, some days I feel I can’t do it anymore. I don’t want to call anyone else. I feel tired from worrying about losing my job. And I feel totally inadequate to deal with his behaviors on my own, but who will help us?
I do love my son. But I don’t love feeling scared that he’ll get hit by a car because I’m not fast enough. Nor do I love getting punched, watching other children get hurt, or constant traveling battles. I don’t love someone telling me that setting up a peer buddy won’t help him because none of the other children will want to work with him. Yes, I want my son to feel happy. Of course I want him to feel included! Most of all, I want him to be safe outside of our home.
I don’t want to fight anymore!
Also, I want to feel better as a parent. Already prone to depression, which tends to make me feel lousy, means this out-of-control feeling makes my heart hurt. Yesterday, I gasped for air through sobs of despair because I can’t make this better on my own. Today, I met with an agency who set up a meeting for next week to create a plan that will likely take two weeks to for approved–two weeks too late. School starts soon, I’m a teacher, and I have no child care for my son. I’ve called senators and house representatives because quite honestly, it’s ridiculous that no one is helping my son but his father and I.
From One Lost Parent to Another…
Logistically, I literally cannot do this alone and keep my job. Someone has to stand up and say, “Enough is enough!” Too many parents stop working because they lack support. I won’t do it. I can’t do it. And my son deserves better than a life of sitting at home alone with his mom. Autism is not something he will just “outgrow” as some people suggest. Now is the time to help him learn strategies to cope. Now. Not ten years from now when he’s an adult. Every day I pray that help will come. That I won’t have to make any more phone calls. That I will feel like I can breathe again.
[clickToTweet tweet=”From one lost parent to another, you are not alone! #autism #parenting” quote=”From one lost parent to another, you are not alone! “]
I’m so afraid that the love I feel for him is not enough. But each day I trudge out of bed, as lost as I feel, and I embrace him. Our journey hasn’t ended yet. We can’t stop. And neither can you. Keep fighting for your child. We can do this together. I know you’re out there. I’m not the only lost parent. You’re fighting the same fight, but in isolation. With 1 in 68 children diagnosed with autism, that means just as many parents are seeking support for their children. We must demand a better standard of care and do it collectively if we intend to make our voices heard.