A Letter to my Autistic Son on his 12th Birthday

Dear Jack,

You’re turning twelve today, and that brings me all kinds of feelings. It brings happiness, because you’re growing taller and stronger; not as cute but more handsome. It brings sadness, for all the same reasons. And it brings fear, because we have lots of questions about your future. Last month, though, you showed me something that made me a little less afraid.

Remember your hospital visit in January? Of course you do. It was a pretty big deal. You had a messed up blood vessel that was pushing up against your brain, and that was restricting the movements of your muscles. Over the past year, you had stopped running and riding your bike, stopped writing on paper, and your mouth had stopped forming some of the words you used to say. We think it was all the blood vessel’s fault.

After the doctor told us you should have surgery or else risk losing more muscle control, your mom and I didn’t want to talk about it very much. “Brain” and “surgery” are two very uncomfortable words when you put them together. But you needed to know about it, so we told you plainly what was going to happen. We told you we were taking you to the big hospital in Portland. We said that they would put you to sleep while they cut the back of your head open to fix a problem. And while we told you, you sat in silence, taking it all in.

That’s what you do. You take things in.

You know, son, when you were little, I didn’t try to talk to you very much at all. I didn’t think you were really listening. Mom would talk to you all the time, and I thought she was being silly. I thought she was fooling herself into believing you were able to do more things than you really could. Grown-ups call that denial.

But I was wrong. Mom wasn’t in denial. I was just afraid to believe that you might, in fact, be a lot more capable than I had given you credit for; afraid to think you might tougher and more resilient than I ever expected. I didn’t want to believe those things, because I thought I might find out I was wrong.

Eventually, though, I got over that, and we all started talking to you as if you understood everything. And when we told you about the surgery, I know you heard us. I know because after we opened all of our Christmas presents, you surprised us with three words, clear and perfect: “Go to Portland?” It was a week before the surgery date, but there you were, ready to charge in.

Son, you know in The Good Dinosaur, how Arlo is anxious about everything, and his dad has to tell him, “You’ve got to face your fears”? I think when you watch that part, you think the dad is talking to you. But that’s backwards. You always face your fears, son. If anything, it’s your father who still needs help facing his own.

The fact is, you are one of the bravest people I’ve ever met.

When I was twelve (or was it thirteen?), I visited a foreign country called Romania, where the culture was different, and the language was different, and nobody understood anything I was saying. It was fun, but it was also hard and sometimes confusing.


Is this what it feels like for you all the time? The world around you must seem so strange. You live in a culture that is hard to understand. We laugh so loudly, and we talk so quickly, but we aren’t very good at waiting to listen. You must live your whole life feeling like a foreigner. An outsider.

And yet, you walk toward it. You get through it. You march in like you did at the hospital, and you face your fears like a dinosaur on his way home to Clawtooth Mountain.

Maybe you don’t think you are brave because you feel afraid. But courage isn’t about what you feel son; it’s about doing the hard thing despite what you feel. It’s about coming to Wednesday Night even though there are lots of kids making lots of noise. It’s about getting in the car and going to school even though everything inside you craves the safety and peace of your living room. It’s about walking into a hospital waiting room even though you know the pokes are coming.

This is what you showed us so clearly last month, son. It’s what you show us every day.

Next year, you’ll be a teenager. We’re about to walk into a brand new wilderness. Both of us. But if you can face your fears, then I think I can face my own. We can face them together.

Happy birthday, little Arlo. And I’m proud of you.

Dad

Here he is in the waiting room, smiling and ready.

Here’s the list we gave to the pre-op nurse. He used it when Jack started to panic, and it completely calmed him down.

And here he is afterward in his happy place. Arlo in the book, and Arlo on the iPad.

9 replies
  1. Ethan R.
    Ethan R. says:

    Thanks for the example on how to press forward with a child on the Spectrum and with a child in general. I appreciate the encouragement that gives.

    Have a Happy Birthday, Jack!

    Reply
  2. Brian Costello Sr.
    Brian Costello Sr. says:

    Happy Birthday Jack!! Get well fast! Thanks, Jason. Your heartfelt articles always help me get through another day. When my son, Danny was younger we always suspected that he was smart because we could never put anything over on him. If there was a big event coming up, that would no doubt trigger some anxiety, we wouldn’t tell him about it until the last minute but somehow he would just know and stay up the whole night before the event. After reading Ido’s book we realized that Danny was indeed listening all the time, even when he was stimming or looking disinterested. It’s been two years since first seeing Soma and the daily struggle is still here but progress is being made daily and our faith in Almighty God is greater than ever. The first open end communication Danny had in his life after coming back from Texas was ” God is strong in the room, no stopping His love”. Thanks again.
    God bless the Hague family!

    Reply
    • Julie Paul
      Julie Paul says:

      I hope it is ok to ask this here, but we have been looking at RPM for our non verbal son. Is Jack doing this and Mr. Costello is your son going through this training?
      I have been following Mr. HAUGUE’S blog since the video and poem were released and always appreciate your letters to Jack. Our son Jesse is similar. Thank you both,
      Julie

      Reply
    • jason
      jason says:

      We would love to go through Soma’s training. For now, though, we are gleaning what we can from her book “Understanding Autism through Rapid Prompting Method.” Last year when we were homeschooling Jack for all of his academics, we started using RPM. Jack has limited speech, but we were able to get much deeper independent stuff via writing…it just took lots of patience and persistence. He would struggle for 30 minutes to write 3 sentences, but occasionally we’d get more than scripted or prompted responses, even an inside look at his own thoughts: “Kids laugh at me.” “I am smart.” “I want to teach like Dad. Tell people about God.” It’s so encouraging to hear about others being empowered to have a voice. Thanks for sharing. –Sara

      Reply
  3. Clare Webster
    Clare Webster says:

    Hi Jason,
    Reading about Jack’s birthday and hospital times from here in the UK. Wherever we are it’s the same situation: how can we communicate with our children? What does the future hold? My friend Sue runs an excellent Facebook Group Unlocking Voices about RPM with frequent input from Soma ( and sometimes Tito) It’s an international group and a great source for sharing. I mention it as some of your replies mention RPM.
    Happy birthday Jack and greetings Team Hague: we are all in this together, thanks be to God.
    Clare , Solihull UK

    Reply
    • jason
      jason says:

      Oh wow, I didn’t realize they had a group. Very cool. Thanks for sharing. We haven’t talked too much about RPM on this blog, just because like anything else, it doesn’t always get results. But we have seen some very good things happen as we’ve worked with Jack, as my wife alluded to in that earlier comment.

      Thanks for reading, and for the encouragement, Clare.

      Reply

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