“Why must the corners we turn be so sharp?

Why must I keep all these things in my heart?

Why must I silently give in to time?

Forfeit a childhood to boxes and twine.”

-Ann-Jo Hale

Twenty-five years ago, my mother wrote a song about the day she packed up my Barbies and toys in order to redecorate my bedroom (upon my turning thirteen).  This is one stanza that I have always remembered for some reason.  Perhaps because I have a memory of her sitting on the floor next to my bed, carefully packing items she thought to save in underbed storage boxes. 

Yesterday afternoon, my good friend Sandy came over to help me whittle down the kids’ toys in preparation for a room reorganization and makeover. 

I expected to feel sad and a little reluctant (thus the need for Sandy to keep me in line).  I knew it would be hard to part with toys I associated definite memories of my little one’s baby and toddlerhood.  I didn’t want to give away my daughter’s first babydoll, the first blocks she stacked, or her favorite chunky books. 

But what took me by surprise was the sheer number of toys of which the only memories I have is of buying them- for my son.  Buying them in the hope that one would be just the right toy to trigger Callum’s interest.  Unwrapping them and setting them out for him, only to find them ignored.  Feeling bad for the gift-giver for my child’s unwillingness to even look at his present.  Memories of putting them on the shelf and watching him play with a plastic hanger instead. 

I know all the correct answers to give people who ask why he is playing with some non-toy household item.  I have read how to engage him with the items he is interested in.  And I know how to find companies specializing in high-interest toys for special needs children. 

What I don’t know how to explain to someone is how it feels to acknowledge that your little boy does not know how to play.  I don’t know how to explain that sadness in a parent’s heart.  And I don’t know how to head off those moments of unbearable clarity when watching him throw a toy truck down over and over again — away from the other children happily playing with all of the available toys in the room.  Those moments when the walls close in, my mind tunes out the chatter and background noise, and all I can see is that truck landing over and over again. 

I’m not so good at that.  I don’t know if it is possible to convey. 

It has been nearly fifty years since King Moonracer and A Dolly for Sue tugged at the hearts of movie watchers who empathized with those unloved toys from the Island of Misfit Toys.  Everyone watching Rudolph the Red-Nosed Reindeer wanted those toys to be played with and loved.  Not because the inanimate objects mattered so much themselves.  But because there is an incredible nostalgia for those carefree moments of childhood when building blocks become castles and empty boxes rocket ships hurtling toward Mars.

These are the moments when I am most angry with autism.  Yes, the autism spectrum has bestowed many gifts upon the world.  But stealing the play of childhood is not one of them.  Autism can be a thief – leaving behind memories of unfulfilled play- dump trucks, puzzles, and stuffed animals doomed to exile on the Island of Mispurchased Toys.  Toys that dredge up only memories of dashed hopes for birthday parties and Christmas mornings. 

And it leaves behind mothers and fathers, putting those toys away in boxes to give to somebody else’s children -children who can and will play with and cherish them.  Castles that will not be built and missions to Mars not bravely accomplished. Sounds of “Vroom, vroom!” that will never be uttered.  And evildoers not vanquished.    

This is but one truth of many in the story of autism.  

That silence can be overwhelmingly loud.

32 responses »

  1. Lora Hinkel says:

    I LOVED this! As a speech-language pathologist, I bought hundreds of toys trying to find the one that would “help” or “fix” things. It didn’t help with the behavior therapist would tell me that I needed 15 puzzles for ABA, etc. The kicker was after literally owning about every toy imaginable, I had a SLP (my son always saw other therapists so that I could be ‘mom’) tell me that we didn’t have the right kind of toys (probably because all she saw was the ones he stimmed on, spun, etc. versus the “good” ones in the closets and boxes that he ignored). Of course, that sent me into another buying spree. Luckily we had a second child to play with many of the poor toys that merely got spun. Unluckily, I work with children and toys are my “hoarders” infliction. I am not gross. I don’t have newspapers stacked to the ceiling or food boxes cluttering the floors. But toys…um….just don’t ask my husband…. I do struggle with what keepsakes to save “for him”…it’s a bit heartwrenching. I have my stuffed puppy and strawberry shortcake dolls from my childhood. Do I save that plastic hanger or the Little People he never played with????

  2. I was thinking about you this morning as I watched my five year old doing imaginative play with legos and dinosaurs. We see flashes of it over the last year. It was not something he was capable of previously and made him uncomfortable to the point he would walk away if you tried to initiate it. Now he will occasionally initiate on his own and is sustaining it for longer. So hang in, and don’t get rid of those toys yet, it may be coming still!

  3. aefountain says:

    The journey for the perfect gift for Troy each Christmas would put me into an anxiety attack. Always looking for the ideal cause and effect toy, that would cure him. Ridiculous thinking, but I owned it each year.
    I remember one year, I burst out crying at Winners (TJ Max equivelant) because that year I found it and to this day we still have it and it’s been fixed a dozen times over. It’s travelled to where Troy has travelled. It brings him a sense of home. I am not sure what I will do when the time comes it’s permanently broken.
    It’s RAINBOW.
    Rainbow is shaped exactly like a rainbow with a Barney theme. There are LED lights that stream in the arc of the rainbow, to which Troy can run his fingers through it and it makes music. It has calming lullabies to put him to sleep. Songs that are pre-recorded to which he can play. The ability to change the sound from piano to guitar to tambourines and the opportunity to play over music that is recorded.
    Last year, I packed up pretty much everything that was not played with, nor attached to, or just plain old tired of it. I invited the Highschool Special Needs Teacher and the Grade School Special Needs teacher and went through each item, explaining to them it’s purpose. They took much of the stuff. The rest was donated to the local daycare. As sad as the wishes and wanna bes were, I had peace knowing other children would grow from the opportunity of playiing with such toys or learning to read the books.
    In the end it’s just all stuff and the best gift I have ever given him was my love, but then again he taught me how to unconditionally love, so truly who got the better gift?

  4. Tami says:

    There is still hope as my son has gotten older – he has slowly learned playing skills, making sounds etc. I have gotten rid of baby toys but he is age 9, I still have lots of cars, potato head etc. that might seem young for him but he has grown into them – I just have been very patient.

  5. Matthew says:

    I can feel your pain all too well. Over the years we have amassed an entire playroom full of toys in the hope that our son Deacon would show an interest in something, only to have him choose the oddest of objects as “toys”- giant paperclips to bend & shape, crayons to peel & break, magazines to tear the pages from & Barney dvd’s to endlessly watch.

    • FlappinessIs says:

      I have a confession. I have a deep and abiding hatred for Barney. The reason is simple. I spent many hours in the presence of a child of autism who watched Barney all day. I associate it now with autism. So Barney can make me sad. It has been banned in our household since even before the birth of our son. My 4 year old says, “I can watch Barney. But only if Mama isn’t here.” lol

      • Matthew R. says:

        I hated Barney when my nephew watched him as a child, but as Deacon came along & was “mesmerized” by him, like any good special needs parent, you learn to love what your child does!

      • FlappinessIs says:

        I guess that’s why I love Yo Gabba Gabba. But, in my defense, they have much better music. I mean, when you can watch kiddie TV and enjoy Devo, The Roots, Jimmy Eats World, and Weezer at the same time, life is good. LOL

      • momof2cubs says:

        I hate Barney too! lol! But my daughter likes it, so i just put the volume on really low! 😉

  6. Robin says:

    I have to say I took my son Finn with me Christmas shopping this year & not only bought him things he showed an interest in, but his 15 month old sister too. It’s funny but he really seems to like her toys, this was the most successful Christmas we’ve had yet! At four he finally participated with the other children opening his gifts without meltdown & played with his and Larkyn’s toys! Score!

  7. Hugs to you. It’s so interesting how different areas of the spectrum manifest differently. My daughter loves baby dolls and stuffed puppies. It’s all she’s ever really played with growing up, ignoring other more fascinating or stimulating toys. Which makes sense, because in many ways she is visually and audially hypersensitive. Cloth dolls and fluffy stuffed animals provide comforting tactile stimulation without overwhelming her hearing and sight. She does play the Wii which has been good for hand eye coordination, and she has fun with it, but I also know that after a certain period of time i have to make her shut it down because I can tell when she’s getting overstimulated and is verging on a melt-down.

    She’s ten. Right now she is in a class of peers that understand her challenges (she’s behind on grade level, but since her birthday is late in the year it’s not terribly noticeable.) But I wait with baited breath to see if she will try to carry these comforting items into adolescence. I fear for the cruelty of other children. She knows how to play with a toy, but she still doesn’t know how to play with other children, often engaging in parallel or individual play instead. She is the child that will cry when adults chuckle at something cute she has done because she thinks they’re laughing at her because they don’t like her. She has no concept that they’re laughing because they do like her and they think she’s adorable. As she grows asking her to change the items that are of comfort to her is going to be like a nightmare, on top of all of the other changes life will force onto her around that time. I’m trying to brace myself for it, but something tells me there’s no way to predict what this is going to look like for her.

  8. Woody Boozer Brown says:

    Eloquently written as always. However, I feel that your distraught sense of the future could be misplaced. I have a 19 year old son, who never even opened his toys. He would sit under the kitchen table and – well – just sit. But guess what? He graduated high school – he attends college and he is now training to be a manager at Papa John’s Pizza.

    All children develop differently. All of our roads travel different paths. But one thing is certain, God’s promises never change. Numbers 14:28 New King James Version (NKJV) 28 Say to them, ‘As I live,’ says the LORD, ‘just as you have spoken in My hearing, so I will do to you: So we must place and speak our words very carefully. We must say that our children’s skills are emerging. We must say that they are gaining ground in whatever area we can speak that over. We must claim God’s promises for these children. He is a great God and wants all of his children to reach the potential that he set out for them.

    I do not believe that God is the author of sickness, disease or genetic disorders and I will not speak their power over my children. I pray for the Lord to send the people into our life who will help all of our children achieve the potential he intends them to reach. And I set my mind and my actions to do every single bit of my part in their lives. God promises strength for the day, comfort for the tears and light for the way.

    Declare Blessing over your family. Here is a Daily Devotional taken from a Joel Osteen Booklet. I love this and pray it over my family often.

    Say to them, may the Lord bless you and protect you. May the Lord smile upon you and be gracious to you. May the Lord show you His favor and give you His peace (Numbers 6:23-26).

    A blessing is not a blessing until it is declared. So today, declare a blessing over yourself and others. Speak that blessing in the name of Jesus! Declare you are blessed with God’s supenatural wisdom and receive clear direction for your life. Declare today that you are blessed-with creativity, courage, talent and abundance. You are blessed with a strong will, self-control and self-discipline. You are blessed with a great family, good friends, good health, faith, favor and fulfillment. You are blessed with success, supernatural strength, promotion and divine protection. You are blessed with a compassionate heart and a positive outlook on life. Declare that any curse or negative word that’s ever been spoken over you is broken right now in the name of Jesus. Declare that everything you put your hand to is going to prosper and succeed! Declare it today and every day (Deuteronomy 28:1-14)!

    Prayer for Today:
    Precious Father, thank You for speaking blessings over my life in Your Word. Thank you for equipping me with everything that I need to be successful. Teach me ~ to consistently believe in and declare Your blessings over my life and the lives of those around me.

  9. Lynda says:

    Oh my gosh! This blog really hits home. I have bought so many toys for my son over the years that have never so much as had a glance. Thanks for expressing so well the thought I’ve had. My son is 13 now and he’s well beyond playing with toys. He loves computers, as do most boys his age. Still, his interests are pretty limited.

  10. Cheri says:

    Before Christmas this year, I decided to try again and took my 7 year old ASD son to ToysR’Us and let him “walk” through the store to see if he had an interest to any of the thousands of toys on the shelves. We left after about 45 minutes of him running back and forth past the shipping doors (he would have done this all day). We ended up getting him his favorite “toy” from OT even though it was quite pricey. We are beyond thrilled that he has played with it every day since. We have passed many, many unused toys to a great little boy who is finally showing them some love.

  11. Suzanne Keyes says:

    Oh God, this one just killed me! You so eloquently express what I’ve been feeling. Thank you for so beautifully saying telling the truth of loving an autistic child. This needs to be required reading for people in a position to make a difference.

  12. Sarah says:

    When we were adjusting to the extent of our younger son’s “difference” I set up a playmobil fire engine and firemen on a table in the garden. It was summer. I had the video camera and I filmed (for reasons I cannot explain) my son aged 3 or 4 sitting with these items in front of him doing nothing with them.
    At the same age my older son would have been having all sorts of rescue scenes and adventures and sound effects with Playmobil fire engine and firemen productively racing about.
    Yet I videoed nothing. My younger son just sitting. Motionless and confused. Alone and adrift. I watched the tape back and sobbed. Evidence of a problem we didn’t want and off our helplessness and inability to respond. I think (and I am a teacher too) I though that if I set everything up properly all would be well. Deluded or what?
    My son is now 11. I walk into the bathroom or into the living room and groups of Playmobil figures are “talking” to each other, looking at each other. The fleeting sorrow of the past is still there, but abating, and the joy of watching an orchestrated play activity blows me away. I leave the figures undisturbed. I ask my son, if he did this and what is happening – and he answers, in full sentences, with pride.
    We are a long way from the finish line of where I would like him to be in his life when he is an adult, but we have come further than I ever dared to dream we would.

    Thank you for the gift of your blog and take good care of yourself. As someone who has journeyed further down the line of autism (though I have lived some of this before as my mother and brother would probably meet the criteria for an ASD diagnosis nowadays) I would say that for us to do what we need to do for our children, sleep is our greatest need and our best medicine. Catch it whenever you can.

    • FlappinessIs says:

      Thanks, Sarah. It helps to be reassured by you guys that things like play may be coming. He keeps communicating more and more, so we are very hopeful. It reminds me of Trisha Yearwood’s song “The Song Remembers When” – describing a moment when something (a song) triggers all of the emotions of a memory you thought you’d forgotten. So many things with autism are like that. You’re okay, and then something hits you, you know?

      Thanks again!

  13. Holly says:

    My guy was never a toy-playing kid, but did/does have a great imagination. He would spend hours with a box and ribbon while we sat in disbelief that we just spend $20 on whatever was about to collect dust. Believe me, he’s a very happy kid for the most part in spite of his play skill differences. What makes him happy and engages him is different from most kids. But he’s happy and confident doing things the way he does them. What I had to get over is that he wasn’t enjoying what I used to enjoy and the way I used to enjoy it. He likes string and ribbon. He adores music and musicals. He doesn’t like reading (which bugs me to no end because I love to get lost in books), because it is hard for him. I’m trying to help him find a way to enjoy reading/books/stories through other ways instead. Part of the puzzle for me has been trying to “get inside his head” and follow his lead. At 15 we are working on trying to transfer some of that enjoyment into functional skills that he can use to earn an income and enjoy his days outside of education. Always working to find a solution to something. Autism is giving that way. (great.)

  14. Deborah Dykstra says:

    I hear you…and the lump came back to my throat as I read your thoughts.

    My children (age 6 and 3) are both autistic. And I have one note of hope to offer – my daughter has begun to exhibit pretend play. It’s based on video and books she has enjoyed, but it’s there…we have little people swimming in her water cups, she’s putting people in cars and saying they are flying “in space,” and now she’s starting to imitate the household tasks I perform (I found some raw eggs in a dirty pot I was soaking the other day! She was “cooking” them.) My son has surprised us recently with some of his play activities as well.

    So imaginative play isn’t coming at the “right” time, and it may not be as rich and complex as with other children, but it is coming. I have hope that creativity and imagination and wonder at the big world will bloom in their minds and hearts, and that I can share in their discovery. I just have to be patient.

    And by the way, Pamela Wolfberg has done some research and written some helpful books on this topic. DIR/Floortime also has some useful strategies to offer. They are worth checking out.

  15. Sarah says:

    Boy I felt every bit of this. I know how you
    feel!

  16. Kerri says:

    Since my daughter’s diagnosis of “classical Autism” two years ago she has had many assessments and also participated in a “Play Skills” study at our local university where a graduate students was studying the difference between children diagnosed with Autism and “typical” children. I knew that my daughter (just four at the time) did not play with toys like other children although she did like to look at books and would engage in activities that were not open-ended but had a particular task to them such as stringing beads. During this assessment, my heart sank even further watching her from another room as she was being video taped. I knew she had Autism and I knew she did not play typically and as the researcher took her from toy to toy and tried to engage her, I realized how much differently she played. As I watched I knew she would she would only participate if she knew clearly what to do such as putting a puzzle together. This was a year ago.. It is now a year later and she has had over a year of ABA and I am exhilirated to say that she now plays with her dolls and figurines and she does it all the time! She does play with them in a scripted fashion (generally always putting them to bed and waking them up) but she plays and she imagines! I really wasn’t sure if this would ever be possible. She needed to be taught how to play with and her ABA therapists developed a play skills program for her. I am so happy that her therapists were able to teach her what I was not. She has just turned five and I watch her gather all her little ponies and characters, she names them using all the names of people she has met and then makes them talk to each other often acting out scenerios that she has experienced. Let me tell you I could watch her forever! I never take any of these moments when she is playing with her toys for granted, such small things for other parents are so huge for us! So I just wanted to share our story with you as your post struck a chord with me. I am so glad you started blogging, it helps to read and know that someone is going through very similar things that you are. Never say never! Remember that you are not alone!

  17. April Carter says:

    Yes, yes! We stopped having birthday parties for this (and a few other reasons).

    Along these same lines? Autism stealing the experiences I wanted to endow my son with. We grew up remarkably poor–not relationally poor, but REALLY REALLY poor and as a child I had few experiences with things like travelling, camping, going to the zoo, a theme park, an amusement park or a carnival. Sometimes I would luck out and a friend’s caring and perceptive parent would invite me along, knowing full well I had no money, and being only happy to provide the opportunity to see something memorable.

    I told myself that as a parent, I would place a strong emphasis on experiential parenting–taking my son to the zoo, the aquarium, camping, travelling, hiking, and even to the circus. I would have the opportunity to do and see all these things and places, but even better, I could share them with my son.

    We have been to the zoo every single year. We have gone to the Aquarium. We went hiking in the Tennessee mountains outside of Pigeon Forge. We have gone to most festivals we possibly could afford or were in decent driving range.

    My son could care less.

    And that, to me, is what most painfully was stolen by Autism.

    I’ve still never been to the circus and always dreamed of sharing that experience with my son. Maybe it will happen; maybe it won’t. But I’m still going to keep on trying.

    As for the toys. I recently gathered some stuff to sell at a garage sale, things that were simply taking up too much space and I had little need for. And what I realized is that my son has some amazing toys. Some were quite expensive as little children’s toys can sell at a premium for safety. Most of them were pristine. Many untouched.

    • Lynda says:

      I know exactly what you mean about traveling, going to museums, etc. My son (now 13) could care less. He cares only about the highways that take us to places, not the destination. Highways are his passion and always have been. Only one good thing that may come of this….I can see a career designing some new highway exchange or superhighway someday.

  18. Heather says:

    Thanks for making me bawl in public! 😉 I understand everything you’re saying and I try so hard to not think about it.

  19. dontturnitoff says:

    (Love this blog, and I hate everything, so I’m glad I found you!)

    My problem is not only does my 6yo not know how to play, I DON’T KNOW HOW TO PLAY. I never did. The only things I remember from childhood are books and learning to DO things: crochet, spin pottery on a wheel; I had a leather-working kit when I was 8. I could MAKE but I couldn’t PLAY. This is still the case, and it makes it SO HARD to engage with my son, Spencer, because I don’t even have the skill set to share with him. So we make things: we write and illustrate a lot of books, and make maps, and draw floorplans to imaginary beach houses. But toys? I don’t think we’ve even tried toys or games in over a year…

  20. momof2cubs says:

    We have lived this too. Until about 3, our son didn’t seem interested in anything but non toys. He would have been happy with a cardboard box. He liked sitting in the laundry basket and watching Mickey Mouse Clubhouse as many times as we’d let him. He didn’t connect with any of his toys. I don’t think he engaged in pretend play until he was around 4. He is now almost 5 and does show interest in more things. It has really helped that he is in his 2nd year of preschool and is at a school that specializes in Autism. The teacher has told me that he is engaging in playtime with the other kids and will try to get them to play with him. I enjoy reading your posts. I can really relate.

  21. Lynn T says:

    I completely share your views. For my grandson I don’t buy toys anymore. I give him gift cards. He loves Chick-fil-A. To the extent, sometimes it is all he will eat for days. I think a gift card for there is two-fold. He recognizes the cow on the card and he likes to go there and pick up his food. And yes, I have spent too much money on things he has no interest in….and probably will do so again. If we only have a few items to save as his “favs” so be it, Maybe, just maybe one day he will receive a gift that lights a fire. I can patiently wait. Love your writings.

  22. jennyg says:

    soso sad but true,,my son is turning 8 this summer and im very concious of him “growing up”,,but it struck me recently,,,but what happened to the child hood bit,,never realy happened,,,

  23. ylewis says:

    Very poignant post. I remember a time when my son was almost impossible to engage. He would pore over books and he would spin things–wheels on trucks, propellers on planes, blocks–everything was basically a pinwheel or a spinning top. At 4, he still does that, but over time, he began to play with toys appropriately and now is even pretending, giving cars and trains voices and dialogue (still highly scripted). My son has different diagnoses (SPD, MERLD, hyperlexia, allergies) and a GFCF diet turned out to a major key to getting him out of a perpetual fog and learning to engage/play/talk, but I remember the helplessness of wanting to interact with him through play and not being able to. You articulated it very well, as usual. Have you read Engaging Autism by Dr. Stanley Greenspan? His Floortime is an awesome method for starting where your child is and teaching him the joy of interacting with others. I have seen huge progress with my son by following the principles of Floortime.

  24. Jen says:

    My son had those challenges, too. Either not playing with toys, or not playing with them the way they are meant to be played with. Then, when I would purge, he had an irrational attachment to things he’s never even picked up, much less played with a day in his life. Now, even though he still has more toys than he will ever play with, at least he has a few that do keep him occupied.

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