My Imaginary Support Group Gets in My Face

After not being able to blog for almost four months, I finally hauled myself into an imaginary support group meeting with other autism parents. This is how it all played out… in my head.



JH — Hi, I’m Jason, and I’m a lousy autism blogger.

GROUP [in unison] — Hi Jason!

JH — Hey. Thanks. But… It’s just that, I don’t really belong here. In cyberspace, I mean. Writing about autism.

Sweater Guy — Tell us why you feel that way.

JH — Well, for starters, I’m not an autism expert. I know my son, but that’s about it.

Sweater Guy — Are you saying you know Jack, but besides that, you know… Jack?

JH — I see what you did there. Very clever.

Sweater Guy [after a high five from Captain Mustache] — Jason, all of us feel that way. We’re all just–everybody, say it with me:

GROUP — “…On an unplanned trip to Holland.”

JH — Yeah, I’ve heard that line before. I get it, but… you, Steve is it? You lead a coalition to change insurance laws. And you in the green. You have a degree in the childhood development field. I’m just a dad.

Hair-in-Buns Lady — Is there really such thang as an honest-to-goodness expert in autism, Jason Hague? I mean, if you seen one chawld with autism–

JH — “You’ve seen ONE child with autism.” Yeah, I’ve heard that one too. But I don’t know if I even want to write about this.

GROUP — [laughter]

JH — What? What’s so funny?

Captain Mustache — You think we wanted to write about this? Dude, I wanted to write about Pez Dispensers. I have the best collection, as far as I know, on the west —

[Sweater Guy clears his throat loudly. Silence follows.]

Captain Mustache — Sorry, sorry. We’ve been working on launching out into conversations nobody cares about… The point is, I wanted to write about Pez, but I found out other parents needed what I had.

JHYou have a degree?

Captain Mustache — No. I have experience, dude. Experience with my son’s emper tantrums. Early diagnosis. Expectations. Pediatricians. Special schools. Social Stories. You’ve got some of those same experiences, dude. People want to hear about it. Young parents, especially.

JH — Well, my wife does a better job of writing advice like that. She’s super mom. No, seriously. She wears the suit to bed and everything.

Hair-in-Buns Lady — That might be true, but you have thangs to say, too, hon. As a dad you get pretty personal when you write about your Jackson. How does that make you feel?

JH — [Shrugs] It stings. Every time I do it, it stings. Because whenever I put myself out there like that, I start to think about the whole thing more. All that Jack is missing out on. All he might miss out on.

Spaghetti-Straps Grandma — Is that why you haven’t written for nearly four months?

JH — I don’t know. Yeah, maybe. But… It’s just… When I write about autism, I’m really not writing about autism. I’m writing about my son, and our life with him. I haven’t tried to give advice or anything. I just try to tell our story, and people still get…

Spaghetti-Straps Grandma — What? Pissed off?

JH — Yes. Thank you. That’s what drives me crazy about this subject. There’s so much bickering, it’s unreal! I thought we were all on the same team here! I once implied that dealing with Jack’s hard times was like suffering, and I was mobbed by an angry Facebook group who said I had insulted them. Why? Because a doctor told them that they sit under the same metaphorical umbrella as the one my son sits under.

Sweater Guy — The Autism Spectrum.

JH — Yeah. And for the record, I think it’s a stupid method of classification that has to change. Seriously, it’s way too broad. My son doesn’t speak, doesn’t stay close to us, he has no fear of moving vehicles, and he may never be able to groom himself let alone live an independent, adult life. If people can offer intricate, verbose arguments about why they are the same as he is, they have proved my point, and I have nothing to say. It’s apples to oranges. I would give anything for Jack to be able to speak and reason like that. To have passion for something besides the shelf of Bush’s Beans at Safeway.

Spaghetti-Straps Grandma — We hear you.

JH — No, I don’t think you do. Because you’re telling me to keep writing, and I’m trying to tell you I don’t want to write about autism. I am sick of the labels and all the yelling about them. I am sick of the gotcha posts and endless vaccine debates and all the political stuff that goes with it. Don’t get me wrong, I’m thankful for advocates, but I don’t want to be one. Can’t I just leave autism out of it? Can’t I just write about my son, who mysteriously had his speech stolen from him? Most of his relational capacities, stolen from him? His future… stolen–

Sweater Guy — NO! You don’t know that! Don’t go there! Anything could happen.

Spaghetti-Straps Grandma — You’re a pastor, aren’t you? Don’t you believe that God could intervene?

JH — Well, theoretically, yeah.

Captain Mustache — And lots of kids have breakthroughs later on, bro. There are tons of examples.

Hair-in-Buns Lady — What about the therapies that haven’t even been developed yet?

(Silence…)

JH — I know. You guys are right. And I’m not giving up. But I have to write about other stuff.

Sweater Guy — You have already. Lots of times, even on this blog. You can write whatever you want. It’s your blog. Your story.

(Silence…)

Sweater Guy — But Jason? You won’t be able stop writing about autism. This journey is in your bones now. Your son is too deep inside you.

JH [Nods] — I know.

[Stands up slowly and walks to the door. Stops. Turns around.]

JH — Jack ran off in May, you know. Freaked us out. He was trying to get to our old house. We found him four blocks up the road, on the sidewalk. Not the street. The sidewalk.
That counts for something, doesn’t it…

[Smiles. Exits.]

14 replies
  1. Has A Soul
    Has A Soul says:

    We love to hear your heart, and really appreciate your honesty and candidness. Thanks for taking the risk and laying it out there for us.

  2. Dahil Portalatin
    Dahil Portalatin says:

    Awesome Jason… thanks for writing from your heart… it was amazing to take a tiny look… praying for you guys always, Dahil… A big hug!

  3. Janae
    Janae says:

    Yes it does! It counts a lot! He had se se to walk o. Sidewalk and even more sense to know where he wanted to go… Inge smart ones head to Miss Janae”s 🙂 xxxxx

  4. kristy smith
    kristy smith says:

    thanks for sharing, I’ve missed you 🙂
    you choked me up. i often feel the same. I’m over the controversy, over trying to ‘educate’ others, share new ideas, share my story to have it analysed and criticised, to BE criticised! i just want to hide away and get on with my life with my family. but then God challenges my selfishness, this life is not about me and my life, its about glorifying Him and reaching out to others. it just happens that autism is a big part of our lives now so that is what I will use to glorify God and reach out to others. Romans 8:28. trying to go with Gods plan to use all things…
    bless you brother.

    • jason
      jason says:

      You’re right, Kristy. We don’t live in isolated caves. We need to speak up… Thanks for the encouragement.

      • kristy smith
        kristy smith says:

        very interesting that i made this comment when i did, my son has just started school last week and there are issues with them not wanting him there more then a few hours a day despite the fact that he is coping really well (for an autistic child). they can’t (won’t?) tell us why they want to reduce his hrs or what problem there is, just being very vague but firm – no negotiation what so ever.
        this saddens me deeply as it is a christian school and has been losing many enrolments to the local public school due to the inflexibility of the current primary coordinator (and this new teacher too now). i head up a parent prayer group at the school and we have been praying over this exact issue for weeks. suddenly i find my own son in the middle of their inflexible, unfair, exclusive approach. a large part of me wants to just bend to their whims and reduce his hours at school to whatever they think (he is very high functioning by the way so it doesn’t make any sense at all!!!). but then i think of all the other families that didn’t have the education to know how to fight (i have an early childhood education degree) or the commitment to christian education that i have. for the reputation of the school and therefore the gospel i feel that i have to fight for change, also its a way to advocate for those families that feel powerless to fight for themselves. i just hate the idea of ‘winning’ this battle and then having to front up to that teacher everyday for the rest of the year. and I’m going to be working one morning a week there next year under that primary coordinator. I’m normally the type to avoid conflicts etc. so this is really scary stuff for me but once again, feel that this is an opportunity given by God to make a difference. gulp

        • jason
          jason says:

          Interesting timing, indeed! I think a lot of private schools don’t know what to do about autism yet, so it doesn’t surprise me. Hang in there and keep praying. You’ll know what to say. You got this…

          • kristy smith
            kristy smith says:

            long story, but we are now homeschooling bailey. we are happy with our decision but not so happy with the way we/our son was treated in the process of getting to this point. but we are still seeking God as we continue to work with the school to address the way they are making families feel. feeling hopeful for change (even if only in the distant future) 🙂

          • jason
            jason says:

            Well, that’s too bad. Private schools are going to have to figure out this issue sooner or later. It’s trickier for them logistically speaking because of funding sources, etc, but I’m sorry the relational side wasn’t awesome. It’s going to be a learning curve for these schools across the board in this area. Here’s hoping you get into a great routine with Bailey, and that you both enjoy it!

  5. Becky R.
    Becky R. says:

    From one Autism parent to another- I totally get it. Both of my boys have Autism (5-1/2 and 3). I don’t want to be one of those parents that tells you we are the same, comparing my life or my kids to yours saying we are walking the same journey – because we are not. Our kids are different, our families are different, and our lives are different. But what I do get is that it hurts, it’s hard, and you feel like no one understands.
    I don’t know you personally – but was referred to your blog by a friend – who heard about you from their family member. He was an old friend that we had met in ministry years ago, life took us different directions and my husband and I hadn’t spoken to him in probably 3 years. He was calling to check on us (back in Feb 2013) and offer his prayers and support because he had heard our oldest was about to have brain surgery (for an un-related condition). You see he had heard about it because we had run into another old friend (from the same ministry group) that happened to be visiting our church one Sunday about 2 weeks before the surgery was planned to take place. After we met that Sunday they felt led to share with these other mutual friends what was going on – and the phone call that evening was quite a surprise for us. When we caught him up on our life and the challenges our family was facing (including the Autism) – he proceeded to share with us how he had just had a conversation the day before while visiting with family in OR. They had read your blog about Jack and his striped shirt. He felt that maybe your writing could be an encouragement to our family as we walk our journey.
    He was right. You are an encouragement. Not because you pretend to have it all figured out. Not because you write about all the ways God is going to change things or perform a miracle in your son. And not because you pretend to understand, or over-advocate, or spout off scriptures that explains why everything is okay and we are supposed to feel okay about it. You are an encouragement because you DON’T write those things. You are an encouragement because you write from the deepest parts of your heart and soul – sharing your raw feelings of fear, doubt, sadness, and pain. You write not as a Pastor – but as Jack’s Daddy. THAT is why you are an encouragement.
    Don’t doubt the impact your writing has. As a writer myself I have taken myself down that same road (even recently – how timely your blog is). Look how many people God took your message through to get to me? From one writer to another – let’s follow God’s lead and let Him use us for His message, whatever it may be.
    Thank you for sharing. I have been struggling myself for weeks picking up my writing again. I think it is time for me too. God Bless.

  6. jason
    jason says:

    “Let’s follow God’s lead and let Him use us for His message, whatever it may be.”

    Thank you, Becky. This is a tremendous encouragement.

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