Broken Toys

I have no idea where this picture came from.

DISCLAIMER: This post is not for the faint-hearted; it’s about what it’s like to parent an autistic child.  As extra incentive, it’s also close to 1500 words…

I was reading the other day, and the writer described parenting as “the most natural thing in the whole world.”  Ugh.  I think I threw up in my mouth when I read that.  I can’t even believe how lucky some people are, and usually they don’t even realize it.

My oldest child has special needs.  His official diagnosis was PDD-NOS; this diagnosis no longer exists as the DSM has decided it no longer exists, but he is a high-functioning autistic child.  If you spent an hour with him, you would marvel at how bright he is.  You would also notice repetitive speech, sensory issues, hand flapping, and numerous other autistic red flags.

Initially, we did not have him diagnosed because we did not want him to be “labeled”.  We were (somewhat naively) hoping he would outgrow the need for services.  Because we chose to not have him formally diagnosed until he was five and a half, we also chose not to tell people about our suspicions.  I told two friends, and otherwise let it bottle up for years.  It became increasingly difficult to talk about, and it remains difficult to write about.  We told friends years later, after he was diagnosed at a reputable center nearby.  (We are lucky to live in an area where there is easy access to a lot of resources.)

He started receiving services about five years ago, after recommendations from both his nursery school director and his doctor.  He was behind on several gross-motor milestones.  He was also eating out of the trashcan while the other children in his class were napping.  Since he wasn’t napping at nursery school, he would often come home exhausted and would either crash on the floor or hurt himself.  He was literally so tired he would fall over, which unfortunately included him falling on our cement driveway and stairs.  (Ordinary activities are exhausting for children with low muscle tone.)  I ended up switching him from a couple of full days to half days, which helped with both issues.

At the time he was also obsessed with eating, and throwing tantrums (usually over food) all day long.   He was not interacting with any of the other children at nursery school, and would occasionally step on other children, without noticing their cries of pain.  He would shriek instead of asking for help, was always exhausted, and would eat himself into a coma whenever possible.  He would frequently eat more than me, even when I was pregnant with his brother!  Left unchecked, he would literally just eat and eat.

Due to his constant hunger, his weight skyrocketed.  At 2.5, he was already forty pounds.  Initially, his doctor did not believe that I wasn’t giving him junk food.  After witnessing him tantrum while I talked about healthy foods, his doctor finally believed me, and recommended portion control.  I had been asking for recommendations on portion control for quite some time, and she kept telling me his appetite would “go down on its own.”

Since food is everywhere, we were not able to go out very much.  It was embarrassing to be the mother constantly denying her child apples.  I would usually add that we “just finished lunch ten minutes ago, and now it’s no longer time to eat. “ Even with that addendum, I would still get quite a few “bad mommy” stares.  Who denies their kid apples?  Aren’t parents supposed to feed their kids?  Duh.  What a horrible parent I must be.  Meanwhile, he had supersonic hearing and was very tuned in to food.  He could hear the breadbox opening from anywhere in our house, and would come running.

It was a very rough period.  Besides the constant tantrums of that age group, we had a kid obsessed with food, who didn’t follow any instructions whatsoever, and who, when he wasn’t pestering for food, completely ignored us.  He very rarely answered to his name, and would usually just sit with electronic toys, and press the same button over and over again.  One day, out of sheer desperation and annoyance, I took out the screwdriver and removed every single battery from every single toy.  Since the “broken” toys made him tantrum even more, I then boxed them all up, and drove them to my in-law’s house.

Without electronic toys to entertain him, he began to tantrum for food even more.  Just to add to the nightmare, he was frequently allowed to eat himself sick at nursery school or at family gatherings.  Grandparents are supposed to spoil their grandkids, right?  And what’s better than spoiling your grandchild with food?

This meant constant dirty diapers… Since my son was also into fecal smearing*, it was not unusual to go get him from a nap and find shit everywhere, literally.   (If you’re squeamish, I apologize for this detail.  Unfortunately, this was a regular part of my life for about a year and a half.)  Every time I put him down for a nap I needed to stay close just in case.  Hearing the word “messy” meant drop everything and run.  Showers were irregular at best, and could only be taken at night.  Even just going to the kitchen to prep and cook food could easily lead to disaster.  It kept me in a constant state of dread.

Since we already had another baby, the unpredictability was the worst part.  I would be changing or feeding the baby, and “messy” would strike.  I’d have to put the baby in a safe place, and listen to him screech while I wiped shit off of walls, door handles, toys, books, and my oldest son.  It was time-consuming, gross… and incredibly disturbing.  Worse, he didn’t seem bothered by it.

Because everyone told us we should, we focused on potty training.  Aside from wiping pee off of my floor several times an hour these attempts were fruitless.  Now besides having poop everywhere, we had pee everywhere too!

My in-laws fought me like the dickens on the notion that something might be amiss.  I understood this in its’ own way.  Who wouldn’t call their daughter-in-law crazy for saying their grandson had a problem?  It didn’t make things any easier though; it was hard enough to admit we needed help.

By the time we had our son evaluated, he was behind by eighteen months in several areas, and ahead by 18 months in a few other areas.  Of course, my in-laws were all over that.  Since I don’t relish irritating my husband’s parents, I let them bask in their joy.  My son was and continues to be very ahead in reading and math.  He is academically bright, but struggles massively in almost all other areas.

Eventually, besides starting OT, PT, and speech, we found an awesome social worker.  (Yes, raising special needs children is a veritable alphabet soup.)  She made us our own potty training book.  And the potty training book explained not only potty training, but that big boys shouldn’t put their hands in their diaper.  It was a wonderful book, but he continued to do it regardless of our wonderful book.  When he finally stopped doing this, it was largely of his own accord.

That Halloween, he told me he wanted to be a “big boy” for Halloween.  He had never had any interest in being a big boy before, and though almost four still had almost no bladder control.  (Of course, that was just one concern on a very long list.)  The week my husband was on his annual hunting trip was a nightmare.  With only one parent in the house, he had a lot more alone time and we had almost one incident a day that week.  A lot of times I would think we were in the safe zone because he’d already gone once that day, but lo and behold… Since I wasn’t anticipating a second dirty diaper, shit would end up everywhere.

In utter frustration, I said the following, “Big boys NEVER EVER put their hand in their diapers.”  I’d said this sentence hundreds of times in many different ways, but never with the words “big boys” at the front of the sentence.

Weeks passed without incidents.  At first I thought it was a fluke, a small reprieve, but it wasn’t.  He stopped doing it.  Another eight months passed before he began potty training, but we didn’t care.  Not one bit.

I still despise singing toys.  Nothing reminds me of this period of our life quite like toys that sing the alphabet.

If you managed to read this whole post, feel free to leave a comment.  Bonus points if you also happen to hate singing toys.

*Ten percent of autistic children and/or adults engage in fecal smearing.  It’s unusual enough that I’ve only met one other parent whose daughter also did this.

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28 Responses to Broken Toys

  1. I don’t know if there are enough medals, awards, kudos, kind words, or hugs for you, Lovely. I cannot imagine what you’ve been through, and what you go through now.

    I don’t have kids myself but I don’t like singing toys anyway. You must loathe them with the white hot fire of a thousand suns.

    • I just laughed out loud. We still absolutely despise singing toys. (And every kid learns the alphabet whether they have thirty toys that sing it or none…)

      I maintain that it’s my husband who deserves all awards. Not only can Michael be difficult, I can be difficult too. That, and he really is awesome!

  2. paralaxvu says:

    My Heart goes out to you<3

  3. jimmydevious says:

    Worse, he didn’t seem bothered by it

    He probably thought he was being…creative. Or at least, that’s what my older brother thought when he did the same thing

    Oh and he’s autistic too. Though I think they call HIS particular flavor of autism Asperger’s Syndrome. He has a penchant for talking to himself at all hours, not understanding when people play jokes on him, no matter how mean or innocent, and when he gets really, REALLY upset he can pretend to “screw out his eyeballs” with his fingers and rant about the most bizarre things….and those most bizarre things can set him off like a hair trigger on a Claymore mine. (From censored content on a TV, radio, or video to if there are two many of one kind of people in TV commercials, women, blacks, buff dudes, etc. )

    Even at nearly 37 years old, it’s often like being around a giant 3 year old. Though on the plus side, my big brother is a dang near encyclopedia of all kinds of information, from TV theme songs, to sports statistics. Oh and he’s a pretty snazzy artist too.

    Put it this way, I’ve been a “big little brother” for most of my life, and there’s more than one reason why I don’t have too many serious GFs. People can be cruel, and not everyone can handle his…uniqueness. Hell, there have even been times when I was young and cruel myself and REFUSED to deal with his uniqueness.. (“But MOMMMM why can’t HE be the one to leave when I’m having my first house party?? He creeps all the girls out!!” ) There have been times he’s driven almost all of us to insanity and the ONLY ONE who still stood by him no matter what is our mom.

    She’d do anything for him, even when he goes “nuts” and calls her the “most evil person in the world” for some trvial little thing. Her patience seems near inexhaustible. A certifiable…saint. 🙂

    Still, He’s never quite had a fair shake in this life, and it’s a shame. I fear for the day when our parents are gone, because I KNOW I’d be a piss-poor-as-hell substitue for his “guardian protector.” I don’t think I have my mom’s strength, I don’t think anybody does..

    But you learn from it doen’t you? You find a deeper well of compassion then maybe you ever thought you had. You learn to endure all kinds of suffering. You learn superhuman mental endurance and restraint from anger. They teach you how to be a better human being.

    • Yeah, I see this with my younger kids as well. At times, it’s incredibly confusing and/or annoying for them. They’re really young so they don’t have endless patience for it. And yet, I also have seen that people who grow up with special needs siblings are truly some of the most compassionate folks out there.

      Although it might seem daunting, the idea of walking your older brother through life after your parents are gone, I have no doubt you’ll be able to do it exactly the way your own parents did, with love and a sense of humor.

      And if all else fails, with alcohol. Kidding. Well, mostly. 😉

  4. Hobbles says:

    I admire your strength. Since I have a disability, it is like the flip side (although I don’t smear). I do have good days and bad days, and I know that it is just as hard at times on the caregiver as it is one the person with a disability. Sometimes harder.

    • As he has gotten older, it’s gotten easier in some ways, but somehow we are still always ten yards behind where we’d like to be. He definitely has more issues with anxiety, and I’m starting to think it stems from the fact that he doesn’t understand what’s going on around him. My five-year-old does an amazing job of explaining movie plots because he understands what motivates people. My eight-year-old just doesn’t get it.

      Plus, even though we’ve never told him, I think he knows he’s different, which is hard for anyone.

  5. sarahnsh says:

    I hate singing toys too, and would never get something noisy for someone with a kid because even though I’m not around kids I know how they work. To them it sounds like nothing, to us it sounds like torture when they play it over and over again. I’d say that you are really an amazing mom and you deserve medals for what you’ve had to do as a parent. And, for what your husband does too, it sounds like you two are a great team together.

    • I absolutely agree that the musical toys are annoying for absolutely everyone. It’s very tempting to add that it’s probably people who secretly hate me who buy them for my kids… 🙂

      Thank you for the compliment but I definitely don’t deserve any medals. He’s our kid so we do what we need to do. My husband, however, is utterly awesome and completely deserving of medals!

  6. I hate singing toys, also. We always took the batteries out within the first day.

    Thank you for sharing this incredibly personal story with us. You deal with it the only way you know how, day by day. I commend your perseverance.

    • Thanks Kim. I kinda realized this is a precursor to some of my other stories… which I’ll probably never get around to writing.

      And I couldn’t agree more on the batteries. Kids should be allowed like one singing toy and no others!

  7. Val says:

    You’re going through so much. I’m not a mother, I can’t imagine what it must be like bringing up children in the first place (apart from a very, very short stint as a trainee nursery nurse when I was in my twenties) but to have to go through all this with an autistic child… I’d say you’re brave, but that’s such a cliche – and that usually makes it seem that there’s a choice. You can really only do what is right for you and your children, and learn what you need to know along the way.

    I read this yesterday and thought I’d comment today but somehow I still can’t think of anything else to say except that you don’t know me yet, and I don’t know you yet, but: have a hug.

    • I actually wasn’t expecting anyone to read this post, but I always hope that someday, someone will wander on here who has an autistic child, read a post or two, and will simply feel less alone. Otherwise, it can be hard to write about, but I’m definitely no hero.

      Thanks for your comment Val and for the hug.

  8. My little brother was diagnosed with PDD/Aspergers and I remember taking him to the speech therapist with my mom (she doesn’t really speak English). Luckily my mom was a stay at home mom and had the time to take him to the different doctors/therapists. She’s constantly worried that he won’t make it on his own. But now he’s 18 and there are so many times when I look at his personality and wish I could be more like him. (He and I are like day and night.) He got an ADD diagnosis in elementary school but my parents never stopped encouraging him and taking him to lessons/tutors. He’s been getting honours every year in high school and has plans on being a computer programer.

    Kudos to you and all the best to your family. Your son is gonna be awesome. Some of the brightest people I know have Aspergers/high-functioning autistic diagnosis.

  9. Our grandson is a Down’s kid, and as an elementary principal for many years with the only special needs classroom in the district I have lots of experience with special needs children. If you have never seen the video The Teachings of Jon it is an exceptional motivating piece for people working with special kids. My favorite part is when they quote an old noves called Clowns of God that says something to the effect of they were not sent here to learn from you, they were sent to teach you. We learn so much about ourselves because of our special needs children. Lots of strength coming your way.

    • I do believe that nothing puts life into perspective quite like having special needs children. It has taught me in so many ways; probably the number one thing is that it’s taught me it’s okay to ask for help. I will have to check out that video. Thanks so much for your comment. I know it’s far more difficult to comment on intensely personal posts.

      And best of luck to you as well.

  10. sagescenery says:

    I taught an autistic kid in NJ in 5th grade…he taught ME a lot!!

    And my husband’s bother’s oldest son has an autistic child…

    It all comes down to what you said in one of your replies…”He’s our kid so we do what we need to do.”

    God gives us strength and the capacity to love beyond our imagination…when we need to step up as a parent!

    You’re doing what you need to do…LOVE.

    I pray for that strength & love daily for you & your family…

    • Thanks so much for your comment Sage. It’s asolutely true that we can learn a lot from children, if we are open to learning from them. We do what we need to do, but I honestly believe one of the most important things parents of special ed kids can do is ask for help when needed. I don’t know why, but for the longest time I didn’t know how to speak up and ask for help when I needed it, and I really regret that. It made things more stressful for us, and really made the weight much heavier. I am hopeful that if and when people stumble across this blog, they will read it and feel less alone.

      • sagescenery says:

        I believe my generation was taught “…If you ask for help, you’re weak…”

        In this technological generation…people goggle, and ask for help all the time! It’s so refreshing to know that others share many of the same problems in life.

        When I taught full-time, and parents would be told about a problem with their child in school….I would encourage them to deal with it now, and not let it be a bigger problem later in life…we all want to hide what we view as imperfections in ourselves and our families…but really God doesn’t see any of us as imperfections…we’re all “fearfully and wonderfully made.” Amen!

        God Bless you!

  11. paulineos says:

    When I was working as a scientist, at several different universities I had colleagues with idiosyncracies, who tended to excel at research rather than teaching, and fitted comfortably into niches involving attention to detail and meticulous observation. In retrospect, now that I have been studying psychology for a while, I know that they’re all probably near the high-functioning end of the autism scale. I suppose it’ll be nigh on impossible for you to read much in the next few years, but perhaps you’ll have a chance to look up Temple Grandin (scientist, inventor and autist), who writes so well about being on the autistic spectrum, and gives practical advice to carers. There’s a huge community of experienced and qualified people online, offering understanding and support to neurotypical carers. You have already helped people to understand this “invisible disability” better: thank you!

    • Love and Lunchmeat says:

      Oh, thank you. I have been able to read a little bit of Temple Grandin, although I suspect it will be in the teen and young adult years that we really turn to it. And possibly have my son read it, as he might well understand it better than us. We do have a wonderful CBT now who helps us with many of the day to day struggles.

      And thanks very much for your comment.

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