As the Mom of a Son Who Has Made So Much Progress, Where Do I Fit In?

It's been a long time since I've been able to write a blog post. Every time I sat down to write, I couldn't. I had no new ideas. Nothing new to share with you. I called it writer's block. But really, it's not that I couldn't write. It's that I felt like my voice didn't really matter anymore, so the words I wanted to say felt pointless to type.

I currently live in a weird no-man's land between the typical special needs life and just the plain old typical life. I have three sons and one has autism. But he's verbal. He was mainstreamed in school. He has friends and has won medals in a sport. A lot of people tell me they wouldn't know he's autistic just to look at him. But what they don't realize is that he used to be nonverbal. He used to be self-injurious. He used to "look" more autistic (if that's really a thing). We used to wonder if he'd ever tell us he loves us.

There are a lot of used tos in our book now.

And because of all these used tos, it left me feeling like I didn't have any reason to speak hope into the lives of other parents who are still asking all those will he ever questions. A lot of our questions have been answered. But do you really want to hear about it? I feared you wouldn't.


We don't quite fit in the world of severe special needs. We don't fit in the world with parents whose children are completely nonverbal, who are entrenched in 40 hours a week of therapy, and the same number of hours spent talking to insurance to convince them they need to cover those hours like they said they would. We don't live in the land of having a helmet on hand in case our child starts banging his head against the wall. We don't have to worry (too much) about our child being destructive in our home in the midst of a meltdown. We don't even have to worry about going to a Mexican restaurant anymore because he now eats the chicken tenders practically every restaurant has on the kid's menu (though we do still have the argument of why he has to order off the kid's menu as a 13yr old when that's the only way he can order what he wants).

Nor do we quite fit in the world of parents raising neurotypical kids. We had a goal review meeting in therapy last month , which we have every three months, so we can report back to insurance that yes, we do indeed still need services. I HATE those meetings. I hate having to quantify the unquantifiable. I sent Sam out of the room and spent an hour crying with his therapist because all I could think about was that here we were, 10 years later, and I'm STILL sitting at a table in therapy discussing goal reviews. And I'll be here again in another three months, listing all his strengths, and discussing the things he still lacks and struggles with because of his autism, and figuring out how to best help him through those things—and measure them (you know, for insurance purposes). And I'll probably cry some more.

Despite all of that, I have felt that the incredible progress Sam has experienced over the years and continues to make, by the grace of God alone, has been prohibiting me from telling our story, sharing the struggles—new and different struggles but struggles just the same—we still have raising a son with autism. From sharing the guilt I have because my son can speak while other kids, who went through the same exact therapies Sam did (and more!) still can't use any functional language whatsoever.

I feel the unjustness of it all. The weight of tension between you, with a child who bangs his head and can't stop scripting or stimming or rocking or flapping or bolting because of autism, and me, with a child who is verbally worried about his future, but still scripts Star Wars lightsaber battles in the front yard, and has meltdowns far less often that aren't nearly as bad as what you experience daily. So who am I to tell you there's hope? Who am I to come alongside you who weep because you still don't know if your child truly understands that you love them. Or if they'll ever be able to reciprocate those very words.

I'm still working through who I am in this special needs world, finding yet another new normal. if my voice is still needed or not. My story has changed. But I think I still belong here, alongside you. Finding belonging is necessary for us all. If nothing else, I can relate to you because I used to be you. And you need to know that you're not alone. When you weep, I weep. When you rejoice, I rejoice. You need someone to speak truth into your life when you can't find it for yourself. I can speak the truth of what it means to be utterly dependent on God's strength and His grace. What it means to grasp hope. I can tell you the hope we have is far greater than that of our children speaking or eating something other than applesauce and goldfish.

I’ll try to keep telling my story because my story is one of hope that I want to share with you, even if you don't want to read it. But what you might not yet know is that your story is one of hope too. I want you to find the grace of God in your life because that is where you find hope. The hope that He will one day make all things new, but he is making all things new now. And we get a front row seat to the show. We even get to play a part. We get to do this together in this vastly varied but beautiful special-needs world.

I want to show you my hope so that maybe you can find yours too. Let's discover and celebrate it together.

Sarah is a wife to her husband Kyle who is a worship pastor in Kentucky. She has three children she is trying hard to raise well, one of whom has autism. She is a writer and speaker, striving to share the hope she has in Christ with others on her blog, Hope in Autism and on the Key Ministry Special Needs Parenting blog. Find more stories of hope by subscribing to Sarah's brand new podcast, A Special Hope! You can also find Sarah's Hope in Autism page on Facebook, A Special Hope Podcast FB page, and on Twitter.