an innocent question

It was an innocent question.

It arrived without fanfare – nestled quietly in a score of others asked by my dinner companion that evening.

She was interested. She wanted to learn about autism – to figure out what it means to Brooke – to our family, to so many others.

I did my best to answer it, just as I had the others – the answerable ones – How does autism affect her? What kind of school does she attend? Will she outgrow it? What kind of support does she need?

In so very many ways – language, communication, social interaction, rigidity, anxiety, humor. Her neighborhood school with a full-time aide. No. Over time she will amass tools to help her mitigate the challenges that it brings, but her brain will always be wired differently. The short list – a full-time aide at school, ABA, speech therapy, OT, social pragmatics lessons and groups, a literacy specialist, a special education teacher for one-on-one math instruction, a neuropsychologist, a developmental pediatrician, medication for anxiety and attention, conversations like this one. 

Those I can answer in my sleep.

But this one.

I stumbled trying to corral the enormity of it.

How does one translate into sounds, letters, words, sentences the Desperate Fear – the Abject Terror that taps us on the shoulder at 3 a.m. or the Even More Desperate Hope – the Unrelenting Optimism that we carry every day like a backpack full of stone?

How does one pour the ocean into a thimble? 

How?

I t0ok a sip of my wine.

Slowly, deliberately I dabbed my lips with my napkin, then took my time folding it into a perfect rectangle before laying it down carefully across my lap.

All the while the words swirled around us, swooping up and over the table – twirling, twisting, flying by in a blur – autumn leaves on an all too familiar wind.

I sat up straighter, steeling myself against the gathering storm.

Slowly, Jess. Slowly.

There’s no rush.

Take your time.

It was an innocent questions.

She wants to learn. 

Slowly, carefully I plucked the flying leaf-words from the air. I chose carefully – only the ones that looked sturdy enough to hold the Desperate Fear and the Even More Desperate Hope without breaking – not them, me – wide open at the table. I refolded my napkin to buy time as I put them in an order in which their meaning might be understood. Finally, I had no choice but to release them back into the air.

They came out as if in someone else’s voice – a faint echo trailing behind each one as it hung in the now gaping space between my companion and me.

But there was no question that they’d come from my mouth. Because two days later as I type I can still taste them – their dull, metallic, heavy residue lingering on my tongue.

.

It was an innocent question.

It arrived without fanfare – nestled quietly in a score of others asked by my dinner companion that evening.

“So what does the future hold for Brooke?”


 

 

30 thoughts on “an innocent question

  1. If I was asked about the Princess’s future, I would say “I can only guess from the amazing progress she has made in the past (almost) 9 years that her future looks exceptionally bright. Her ability to share her thoughts and feelings is growing relentlessly and while anxiety might be her biggest challenge she has proven that she has the tenacity and ability to turn fears into comforts (as seen with her dogs). So I believe whole heartedly that she is collecting tools to allow her to have a fulfilling and love-filled life. The specifics of what that life may look is

  2. Oops cut off . . .
    Is a mystery yet to unfold just like it is for all children at this age. But my hope for her future is justifiably endless.”

  3. When we did my son’s SSI meeting, the judge asked me, “What are you going to do when he turns 18?” I looked at him and said, “Pray harder.”

  4. How do we know what the future holds for our neurotypical children, let alone our special kiddos? I mean really? In a world where a man three times divorced can run for president. In a world where a black man IS preseident. Possibilities are endless. Let is what I would tell her, IF she sat with me!

    “Anything is Possible”-Kevin Garnett.

  5. It’s a question I hate; While it’s true that no one can know the future for anyone, this one brings up all the fears and doubts, and gives them the space to war with the hope and progress. I can’t make my mind turn away from it and I am left feeling much as you describe. And slightly ill and uncertain.

  6. Probably the hardest simple question ever. The only answer I can come up with is “I don’t know” and we really never do know even for our typical kids. What we have our hopes and dreams (realistic or not). It’s similar to the IEP meeting question, “so where do you see your son/daughter in the next year?” I hate that one.

  7. It’s a question I can hardly ask myself and I now calculating years. When he reaches twenty, I will (hopefully) be 70 yrs old and that scares me. I wonder about his future every day, but then no one can know what their future holds. When I look ahead, I see an impenetrable fog. There is no other way to look except just to take it one day at a time… that old cliche proves itself every single day.

  8. Wow…… for any of us it’s such a difficult question….. but who REALLY knows what the future holds for ANY of us??? No one can predict, so I say, she’ll be who ever and what ever she wants to be – but as long as she is HAPPY, all will be ok in my book!! xox

  9. I agree…how do we know what the future holds for ANY child? A NT can turn out to be a drug addict. Or a thief. You can have the highest hopes and that child will either live up to them or throw them in the dirt. And for OUR kids…how do we know?? They are still SO young and SO much progress is being made. We don’t know what the future holds for them any more than the parent of an NT. It’s not a fair question, really. But for us, it holds more weight. It’s SCARIER. It wakes us up at 3am. It’s loaded.
    I know it was innocent on your companions part….but that is one question NO one can answer for their kids. And for us, it’s even harder than anyone can fathom.

  10. I’m heading in to an impromptu IEP meeting in 4 hours with Ms. Teacher-Who-Doesn’t-Get-It and probably thinks I’m an irrational parent. I have a sudden urge to print this out and bring it with me.

  11. We can’t answer that for any of our children with or without autism. The question was not one for a dinner companion to ask, but it is one for you to ask yourself so that as she grows and gains skills, you keep building on those interests and skills so that one day, she will decide her direction as best she can with whatever help she needs.
    The fear of what the future will or won’t be, will paralyze you and not let you be free to help her grow to her level of “sucess”. Just keep the course and watch the growth. The future is yet to come….
    Love you,
    Dad

  12. Yes – what your dad said – exactly! Don’t let the fear grab hold of you – acknowledge it and let it pass by. Fear of the unknown is a beast but she is too young to have her entire future mapped out – as is any 9 year old! Her future is bright and she will shine that flashlight on her interests and develop the skills she needs to make it work – I know this from reading about her growth here on the diary. That girl is amazing! My boy is in high school now and his education is about identifying his interests and developing those in a meaningful – hopefully employable way. I’ve been to a workshop for kids transitioning to high school and beyond. All those people on the road ahead of you and me have put in place some really wonderful things. All this leg work of awareness and raising money for Autism Speaks is leading to more and more opportunities for future programs that will be even more beneficial to our kids. Keep breathing Jess and enjoy each moment because before you know it she will be telling you to let go. I bet you doubt me but I’ve been in your shoes and in 6 short years you will be in mine. Sending you love my friend.

  13. an innococent question but not the most thoughtful one – what will your dinner companion’s future be, for instance? Why do people assume that we have any ability to know what will happen even a minute ahead? That invites a plane to crash through our living room 🙂

    I try to make light of it and lightly say, “Last I checked, there’s no crystal ball around here” and change the subject. I’ve thought about that question since my kid was dx’d 8.5 years ago, and have decided that actually trying to answer impossible questions like that for others is needlessly sapping myself of emotional energy. And I need all I can get. XOXO

  14. As a friend has said, “My magic 8 ball is broken.” However, I can see that Brooke has progressed so very much in the year or two that I have been following your journey. The future looks pretty dern bright.

  15. I get this question occasionally, and it’s my least favorite of them all to try to answer. Nobody knows the future for their child. It sounds however like this query came from a good place, and I think it’s great that people outside of our community are asking us questions at all. I don’t imagine this scenario was transpiring much ten years ago. It’s progress, and nice to see it mirroring Brooke’s!

  16. The hardest question! Sometimes I think the possibilities for my son are limitless because he’s so ‘smart.’ Then again, so is my brother-in-law, who at 50 is living with his parents because he can’t find the right employment fit. It’s so scary.

  17. I was tired of hearing that question as well….and I can picture it now, the facial expression that goes along with it ( sure it could be well intentioned but who cares….it stings!) I tried the crystal ball thing or not knowing..but It ALWAYS ended up ruining my day/night whatever! So for me…I felt better when I could say that we are working to make sure he has the best future possible, just like you do for your kids. Usually I would get a * wow you are amazing* or some dumb comment like that. For me at least I turned it around to them…and would usually say to them, you would do it too, because as Moms we do what we need to do for our kids ( that dreaded question that is second to the future question…ya know the one that goes something like ” gee I could never do what you do”. I had plenty of years to perfect my response to where it would make me feel better….and thankfully I dont get the question anymore because both my kids are considered * recovered* ( my oldest is 15 and my younger one is 11 with two extra children thrown in for good measure! 🙂 Kathy

  18. This is my first time here – I just discovered your blog on the MyAutismTeam blogroll. This post is beautifully written and really captures the emotion.

  19. Oh my gosh…like so many others have said, “what does the future hold for ANY child?” Life is an ever changing adventure for us all. What “is” one day, “is not” the next. The future is wide open for Brooke…believe it.

  20. All that I can say for my David is that he will be happy that’s what matters to me with all of my kids. He may struggle but he’s a happy person he sees all the little joys and isn’t that what we all want to have.

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