Dear Mom of a Child with Autism,
Hey there, friend. It’s April. I know … I’m the month you’ve been dreading. For the next thirty days, you’ll grit your teeth and power through. This is the month where blue lights illuminate buildings and Facebook profiles. Trees lining residential streets will be adorned with blue ribbons. You’ll find puzzle pieces on just about anything that can be sold to promote and spread awareness for the “cause.” But in your house, in your family, Autism isn’t just a cause. It’s not something to be celebrated. And you certainly don’t have the luxury of focusing on it for just one month of the year. Your precious child is a gift, but his Autism is not. And I want you to know that I know that. I see you, I see your child, and I see your struggle.
My heart breaks along with yours when people stare at your family, silently judging you without bothering to ask questions or offering to help. Self-injurious behaviors are a part of your world. Your child stims. He yells. He makes weird noises at inappropriate times. I understand family outings are a lot of times impossible, and you always have to have an escape plan just in case.
I am just as frustrated as you are that Autism is so misunderstood. So few know about the medical conditions that plague your son and others with the disease, including gastrointestinal pain, chronic diarrhea, parasites, and more. So often Autism is romanticized with images of quirky geniuses who may have problems with social skills. While I’m sure these children do exist on the spectrum, the reality is for your family, this is not the case. Not even close.
I want you to know that I get beyond frustrated when I hear people utter those phrases you to. You know the ones, “God must have thought you are special to give you a special child like this,” or “God only give you as much as you can handle.” You and I both know statements like these are not only completely untrue, they are dismissive and condescending. You don’t have super powers that mothers of typical children don’t, and you can’t handle this alone. No one can. But I am in awe of how you’ve relied on your faith, family, community, and the resources available to give your son opportunities to thrive, despite his disability. I hope you know how strong you are.
I know people say ridiculously offensive things. They question why you chose to have more children. They pity you, say it sucks to be you. I know you want to shake them and say, “You think it sucks to be me? Think about what it’s like to be him. My life is cake compared to his daily challenges.” You would trade places with him in a heartbeat, as most mothers of special needs children would.
I’m so sorry about the financial burden Autism has brought upon your family. I remember you spent an entire month’s salary to travel across the country to see a doctor that could help your son. I learned from you that there are so few doctors actively working to help children with Autism heal, and the expense was worth it. But still, the stress of spending that much money for results that come at such small increments must be overwhelming.
You’ve spent countless hours and endless amounts of money on therapy, and I’ve watched your son progress and become more and more independent as a result. But I’ve also noticed the worry in your eyes. The worry that rears its ugly head when you are left wondering how your hard-working family can begin to afford the astronomical costs on your own.
I understand the topic of vaccinations is a sensitive one, and I’m so sorry you are sometimes forced to debate the topic when you really don’t want to. It’s a shame that the Autism community is so divided on this issue. I respect the medical choices you’ve made for your family, and I hope that others will too.
I desperately want you to keep believing that healing from Autism is possible. I hope that by hearing and reading stories of other children who have recovered or are recovering will encourage you to keep fighting for yours. I know there are days you just want to give up, when it seems that recovery is nothing more than a fantasy. But you won’t give up, because you are his mother.
This April, my hope for you and other mothers of children with Autism is that the month will truly bring awareness, and not celebration. I hope that those of us who aren’t moms of children with Autism will grow in empathy for you. I hope when we see your son melting down that we offer to help instead of rolling our eyes and assuming he just needs discipline. I hope we teach our own children acceptance of those that are different. And I hope that if we choose to wear blue or change our profile picture for Autism Awareness Month, we are also willing to do the actual work of supporting you.
You can’t hear this enough: your son’s life matters. You inspire and encourage me.
You are doing a great job, mama.