September 12, 2016

It’s Complicated

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , at 11:50 am by autismmommytherapist


(Dear readers, I apologize for my prolonged absence. It’s been stomach virus, flu, and root canal here (oh my!) but I’m back in the saddle now).

Dear Justin,

I’ve been having conversations about your future lately with various people, all of whom I truly believe have your best interests at heart. We’ve been trying on phrases like “shared living” and “group homes” and “sheltered workshops,” and I’ve been rolling them around in my mouth, trying them on for taste.

None of them taste nearly as good as chocolate.

You see, I’m trying to figure out our collective future, where you will live, where Daddy and I want to live (according to your father it’s not a permanent stint in Jersey), and where your brother Zach, who is also autistic, fits into the picture too.

Let’s just say it’s complicated.

You see, my heart is torn my sweet boy, because as much as you’ve matured and grown since those difficult days twelve years ago when you were diagnosed with autism at the tender age of seventeen months, some things with you have not changed. You still love being at home. You still want to leave said home for about an hour each day and do something wonderful. The only place you ever want to stay more than an hour is Great Adventure or Disney, and with the latter being a bit financially out of reach on a frequent basis that leaves us with Six Flags and the occasional Pixar movie for outings of any length.

Your needs are complicated.

I have friends, friends with severely autistic adult children, who tell me there is still room for growth, that I don’t know how you’ll change and grow in the next eight years before you graduate from high school. I speak to them of the group homes their sons live in, the day care their kid calls college, the seven-day-a-week in-home care they’ve fought for and won for their child. I read books and blogs about adult autistic children and their particular work and living arrangements.

For many of them their transition has been fabulous.

And I know in my secret heart of hearts that if I’m honest, most of these pretty choices are not for you.

You see, I believe if you had your way you’d stay with us and I’d live to be 121 to your 85, and we’d go to the great beyond together holding hands, you first, with me following just moments after.

This dream is why your mother runs every day and limits her wine consumption (most of the time).

One might ask how I know this when you can’t tell me yourself that your preference would be to live with us, well, forever, but I know.

I just know.

I know this the way I knew at six months you shouldn’t have had such a penchant for spinning things.

I know this the way I knew something was seriously different about your development at sixteen months even when your pediatrician didn’t seem that concerned given your father’s childhood, and told us to “wait and see.”

I know this the way I knew my world was forever changed when just a month later he shoved some articles into my hand with the word “autism” in their titles, told me to call a developmental pediatrician, and basically shoved me out the door.

I also know our pediatrician was an asshole, but that’s for another story.

I know the more adventurous trappings of an adult life would not be to your liking the way I know I have to build in extra time in the morning and at night just for us to hug.

I know if you could talk you’d tell me you’d like to stay with us forever so no matter how big you get you can still sit on my lap at night, listening as I read your Eric Carle story for you, fulfilling your penchant for cuddling and that particular fiction you’ve loved since infancy.

I know that if you had your choice everything would remain the same, with even that interloper of a little brother remaining in our home with you forever.

I know if it was possible you’d keep your routine of home and school and one-hour-outing for the next seventy years.

I also know that things will have to change.

Part of me wants to keep you here with us until we can do it no longer, and I don’t say this as a martyr.

Part of me wants you to live apart from us to give your father and I some breathing space, and I don’t say this as a callous mother.

Part of me wants you to have some sort of job, to contribute to society.

Part of me just wants you to have a life of leisure because I know you won’t give a damn about having a job.

Part of me wants to keep you here with us and freeze time for you, keep you safe and secure.

Part of me desperately wants my freedom back.

Part of me wonders who will snuggle with you and read you your bedtime story at fifty.

Part of me laughs at myself for these musings for everywhere I turn (except for Hawaii which seems to have fabulous adult services, aloha!) my options seem limited, to say the least.

Part of me accepts that your father and I won’t be here forever and that eventually you will live apart from us (and not with your little brother as he has already told me), so really the only questions are when, and where.

Part of me just wants to know the future.

Part of me really doesn’t.

All of me wonders, time after time, how I will manage to give you a fulfilling life for forty years from beyond the grave.

Those “how” questions are a pox upon me.

As I accept the fact that none of this is an easy fix, all of me knows I love you and want for you the three things I’ve wished since your conception- for you to be safe, happy, and loved.

And all of me knows it’s complicated.

For more on my family visit my blog at

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  1. misifusa said,

    My heart is with you, always. xo

  2. Questions without obvious answers are the hardest questions of all. It’s good that you can write about them as you consider what’s best. (No one would blame you for moving to Hawaii!)

  3. OMG just kill me. Just. Kill. Me.
    You reached into my heart and pulled out…everything.
    “You see, I believe if you had your way you’d stay with us and I’d live to be 121 to your 85, and we’d go to the great beyond together holding hands, you first, with me following just moments after.”
    Oh honey…wish you or I or SOMEONE had the answers. But i thank you for putting this into words.
    Full Spectrum Mama

    • Thank you, this piece meant a lot to me! We will both figure this out! I loved that line too… 🙂

  4. When there is a vexation of the heart over such a circumstance, in which one finds no satisfying answers, at least we know the wonderful certainty of one thing…love is the cause of that vexation.

  5. Juju G said,

    Thank you so much for sharing your feelings. I rarely share mine or even think about the future for my son who is also within the spectrum and the truth is because it is really scary and it tortures me a little bit.

  6. What a beautifully written blog! I actually work with a lot of families like your own. Have you ever heard about independent living or the options they have for you? I know it’s not very well known but it’s one that strays away from the norm of group homes. It allows your boys to be safe and happily taken care of in their own home while giving you your freedom from caretaker to mommy back. You even have the choice to either be their caretaker or be able to choose anyone who you would like to care for your boys, even friends or family. It gives you piece of mind and your boys the life they want to keep.

    I hope I have at least given you another option to consider. Keep up with the amazing writing!

  7. Shannon W. said,

    I think about this daily. My sweet son loves us and his routine. I sometimes feel pain worrying about the future and our health, so we don’t leave him alone in this world. Thank you for sharing. There is comfort in knowing that there are others who completely understand.

  8. Vivian said,

    Well written, I worry about lot about what the future holds, tnx will like to know and here more from you

  9. Lori H said,

    My friend, you just touched on every fear I have. These are the things that keep me up at night. It’s not like there is an abundance of options for our kids as far as living situations when they become adults. Like you, I plan to somehow live to 120!! Piece of cake, right? Xo

  10. Torie Garrison said,

    I have two sons on the spectrum as well,my oldest going on 20😞 aside from a few adjustments in your beautifully written entry it’s everything exactly the way I never know how to get from my thoughts to a piece of paper! I enjoy and benefit greatly and appreciate you and your blog’s!! So from one mother to another THANKS so so much💗

    • You’re welcome and thanks back to you as well! Having two keeps it interesting, doesn’t it? Thanks again for reading!

  11. Charlie's mom said,

    Tears fall as I try to understand why you know the words that are in my heart. This is so beautifully written and honest. Thank you. My husband and I struggle to know what my son’s future will bring and all we want to do is keep him safe and happy. Simply amazing –Charlie’s mom

  12. Oh wow, I could have written this myself, if I were a writer. These are the same feelings I have every day as my sixteen and eighteen year olds with autism keep growing up. Transition feels like a dirty word sometimes…

  13. Dominique said,

    Hello, I’m an autism momma therapist too. My son is 12 and we live in Petaluma. I’m barely making it going through a divorce with his dad, not good at keeping friends, daily despair

    • Try your best to do something for yourself, even it it’s only 15 minutes a day- try. I hope things get easier for you soon!

  14. Vicki LaBelle said,

    Thank you so very much for this. For whatever reason I have been consumed by similar thoughts lately to the extent it is sometimes overwhelming — even paralyzing. Knowing others are also struggling with reality of life and longevity issues is somehow calming and comforting to me. Because it reminds me that I am not alone. And there really are other people that understand.

    My son is 9. He is verbal. He has made amazing strides in recent years, especially academically. But we are still working on some of the most basic of things when it comes to self care. And we are older parents — 46 and 55 — with some existing health issues that I am working hard to manage and overcome. I feel your angst, fear and pain intensely.

    If only…. there were a fountain of youth and health that would ensure parents of children with autism and other special needs could be with our beautiful and beloved children until the end.

    • If only… We have a nine-year-old and are in our late forties, I get it. It helps to know you’re out there and you get it too. Thank you!

  15. Marilyn said,

    They say my daughter is “high functioning”. What they don’t tell me is what that means. She is social only after you’ve been with her a few times or is in top a horse. She is 27 and drives a car but she couldn’t funish her AA because communication is a state requirement. Considering the fact that I had to go to scheduled professor meetings, and talk for her, this requirement wasn’t going to happen. I fought hard for her and hit road blocks. Now she is in therapeutic horse riding, volunteers at the stsble. And participates in the Special Olympics. She is always near me because she is afraid of being alone. I am worried about what will happen when my husband and I are gone. My son said he’d step up to the plate.

    • It sounds as if you’re doing wonderful things for her. I’m glad about your son! Remember to take care of yourself too!

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