A Day In The Life…A Special Needs Breakdown

I remind myself that this too shall pass.

EVERY. SINGLE. DAY.

Missing Easter eggs–taken from fridge–still not found?

This too shall pass.

Two teardrop shaped containers of food coloring found in son’s bedroom. Two still unaccounted for. Mattress now looks like Jackson Pollock vomited there.

This too shall pass.

No clean clothes today…most of child’s pants cut up by scissors or missing. Must remember to check the heat ducts later…

This too shall pass.

Looks in fridge. *Stares blankly* Where’d the chicken go?

This too shall pass.

If you are a happy parent, please stop reading here. If you find fulfillment of life in nurturing and raising your beautiful, perfect little yous. Go away. This is not the blog you are looking for and I won’t be nice about it.

If, however, you have had dark thoughts on miserable, cold days. If you haven’t showered in forever and aren’t entirely sure whether it’s Tuesday or the apocalypse. Join me, comrade. And welcome.

*

While studying to get a degree in Russian Studies*, we were assigned the work One Day In The Life of Ivan Denisovich by Alexander Solzhenitsyn. Its simplistic, yet brutal reflection of the miseries of life for prisoners in a Russian gulag are played out in a single day for the title character Ivan Denisovich. What I did not know then, while reading about the struggles of someone trapped in a cold, cheerless existence, is that it could just as well be a metaphor for what it is like to parent a special needs child.

This too shall pass.

This has become my mantra. This reassurance every time my son finds a new and inventive way to make me regret the wonders of fertility treatments: the bad moments pass. It is a lifeline when you feel you are drowning and desperate options rear their suggestive, ugly heads.

This too shall pass.

Sometimes you find yourself sitting by the side of the road weighing bad to worse choices. Because bad are the only choices you can see.

This too shall pass.

I took my son to a birthday party Friday for the son of a longtime friend in the Autism Community. Little Man refused to enter the building. When finally forced to enter, threw a massive tantrum, beating himself and biting his arms, until he realized he wasn’t getting his way and we were going to stay. He sat rigid, refusing to join in—in a place where other children played jumping on trampolines and swinging from giant swaths of spandex dangling from the airplane-hangar-sized ceiling beams. He tolerated it until I would let him go home again.

This too shall pass.

We traveled to the delightfully grey and 40-degree weather in Traverse City, Michigan. I drove for three hours. Got fifteen minutes in the hot tub of the hotel before my son screeched his regrets and left the pool; I took him for his requested walk to the nearby lake where he promptly wanted to leave; returned to the Comfort Inn to sleep to dream of wifi only to be woken at 6:00 a.m. because someone next door took a shower. This was a good day. No major meltdowns.

This too shall pass.

Then yesterday happened.

I took my son to an event sponsored by the school celebrating a program that is intended to engage children like mine with the neurotypical kids. The ones who can play the games and take part in ordinary life. The children not like my son.**

I run into his teachers and classroom aides.

“Little Man had a really good day today.” One person tells me.

“Really, he was very happy.” Another stops to greet my son.

This too shall pass.

They don’t hear it. They don’t hear the bell ringing, the tolling, sonorous carillon signaling the shift from happy child to frantic, exhausted, terrorized hulk.

Neither do I.

This too shall pass.

We win the most patriot looking red-white-and-blue cupcakes at the cake walk—on only our sixth or seventh time around. *Thank goodness.*

I coax my son into a bizarre game where marshmallows—a food my son loves—are tossed back and forth to be caught in cups. None of the marshmallows are supposed to be eaten, however, because they keep hitting the floor. My son sneaks one anyway, confused that he couldn’t eat them in the first place. Has no one heard of cotton balls?

Cupcakes
Guess who snuck these into his room while mommy wasn’t watching?

 

This too shall pass.

I drag my reluctant child to a photo room where mustaches on sticks and leis are strewn to give families props to stage silly portraits. I manage a few with my unsmiling teen and he drags me out after thirty seconds.

This too shall pass.

He attempts to leave the building by several exits. We have only been there a half hour, but he wants out.

I ‘encourage’ my son to participate in a game in the library and he balks.

“One game. Candy Land…or Yahtzee. Then we can go.” I plead.

It is too much for him.

He is desperate and begins hitting himself violently.

Thwack. Thwack. Thwack.

It is the sound of someone testing a melon for ripeness. It is the distant sound of an axe biting into wood. It is my son’s fists cracking against his skull.

He is crying from angst or anger or frustration or stress or some combination of all of these emotions. Or none. Perhaps he is drained and all that is left is the hollow drum upon which he beats an empty tattoo.

This too shall pass.

I push him into a cozy nook for readers to sit by a pretend fire where a painted tree grows to spread its branches overhead. Or so my vague memory suggests. I was too busy dosing my child with a sedative so I could get him out of the building without scaring or hurting anyone.

This too shall pass.

As I am driving him home, I am blinded. Blinded by regrets that my son cannot take part in fun activities. That I don’t get to be the parent encouraging him to stretch his limits, but instead failing to recognize them in time to prevent catastrophe.

It is as if his emotions have spilled over from where he sits in the back seat tearing strips of paper to calm himself.*** He winds the paper around his fingers and I think, “At least he’s finally using all those summer workbooks I purchased.”

I am crying now for the pain he feels but cannot express. For the fact he can never, ever make any real friends because he has such devastating limitations.

That he is so broken and so am I.

This too shall pass.

I pull off the road because, really, I can’t see now. I can’t see the point in continuing.

I park in an empty florist’s lot. The strip of grass that divides my car from the busy traffic is a green wedge of nature slipped between asphalt boundaries and a Panera coffee shop.

I am tired. I am listening to the recording of my parenting failures skipping and repeating in my head. And before anyone thinks to tell me what I great mom I am. Stop. Just stop.

Because you don’t know the thoughts I had.

This too shall pass.

You don’t hear the insidious little fucking voices in your head telling you that there has got to be an easier way than this. That life shouldn’t be this hard. That life shouldn’t be this…

This too shall pass.

You all think there are programs to help families in need. You all think we are getting help to make it through the every-fucking-day struggle of making yourself get up when black thoughts drag you down.

Maybe there are. But you know what? I don’t qualify for them; barely anyone does. You apply through miles of red tape, applications, certifications, interviews, and, if you are lucky, you are put on a wait list to try and get one of the 450 some slots the entire fucking state has to help people with severely handicapped children who don’t qualify for Medicaid.

You heard me. 450 slots. For a state with a population approaching 10 million.

You all think that there must be someone out there helping families like mine make good choices and to step in when things get bleak or despairing. You would be dead wrong.

This too shall pass.

This is the problem with real life. Ugly thoughts are like rancid cheerleaders rooting for destruction. There are no angels to balance you out. Sometimes the monsters win.

But not today.

This too shall pass.

I watch the robins bobbing on the slender manicured lawn that is trapped on all sides by concrete barriers and the threat of chemical castration or decapitation by lawn mower for any daring weeds. The little red-breasted birds are rejoicing in the abundance of rain-forced worms.

This too shall pass.

I turn on the book on tape I’ve borrowed from the library.

The Magic Strings of Frankie Presto rolls out the welcome mat to sanity and invites me to listen. It takes some kind of talent to write a comedy set around a funeral.

Fifteen minutes later, I’m safe to go on.

If anyone knows Mitch Albom. Tell him, thanks.

This too shall pass.

In writing this, I was reminded that in college, I found One Day in the Life of Ivan Denisovich to be uplifting. Despite all of the misery, Ivan Denisovich finds moments of grace—not religious—but humanizing that help him to eek joy from the life he does have.

Ivan Denisovich got fish eyes in his soup.

I got robins bobbing for worms and the lyrical beginnings of a musician who might be a magician. Or vice versa. I’m not sure yet. The story has only begun.

I’ll have to listen for another day.

Asterisk Bedazzled Footnote:

*Because I’m all about collecting useless degrees. Ask me about my aborted career as a teacher. Go ahead, *cocks imaginary pistol* ASK.

**The normals (aka The Little Fuckers.)

***The real reason why I donated my son’s books to the school—because watching him destroy something I love and had hoped would connect us is too painful.

 

 

———————————final thoughts——————————————-

I am fine. It was just a bad moment. We all have them. Do not contact the authorities or  the Department of Human Services. I shared this to let the world know we have a problem with our resources and mental health care assistance to families in need and maybe to let other parents of special needs children know they are not alone. We just need support.

If you want to act, check out our local Autism Support of Kent County (A.S.K) agency http://www.autismsupportofkentcounty.org. They have helped my family as well as others in various outreach programs and financial aid for summer camps and therapies. Their Annual Walk for Autism is Sunday, May 7, 12:00 noon– at John Ball Zoo, 1300 Fulton W, Grand Rapids, MI 49504. If he’ll go, I’ll be the one leading my son around with a bag of marshmallows.

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34 thoughts on “A Day In The Life…A Special Needs Breakdown

  1. I have no idea what you are going through. None. I do not have children of my own. I did a short stint supporting people with developmental disabilities, so I have an appreciation for the laughable state of public funding.

    Laughable isn’t quite the right word. Pitiful? Shameful? How do you label something that on the surface is meant to offer respite, support, and hope and then when you step up to take part… whoosh! …the carpet is rolled up and the the sign “no vacancy” is slapped on the door. Cruel? Is that the word I’m looking for?

    I am so sorry.

    May the robins and the musical magicians continue to appear when you need them.

    Liked by 4 people

  2. You’re a hero and you have ever right to have bad days. I wish I could take you out for dinner and margaritas or something.

    I taught many young adults/kids at a community college who were developmentally exotic. In every case it was a way for 1) the family to get money from the government through FAFSA, 2) the kid to be out of the house. One of the students was an autistic young woman. She just told me on the first day, “I’m autistic,” and handed me a paper that set out what she could be expected to do and what I shouldn’t even ask. It worked. In another class a boy came in, sat in the front row and said, “I’m not smart. I am only here so my mom gets a break from taking care of me.” Truly, he could not learn, but he was there every single day in the front row and he tried. I taught a woman who had brain damage from starvation as a baby. I taught a man who got encephalitis at 15. It damaged his brain but left him with the uncanny ability to relate to autistic children. Who knows how or why, but he ended up with a degree and that’s been his life’s work. The class was half online. He introduced himself to his classmates saying his brain was damaged, and he was slow mentally and awkward physically and kind of ugly, but he would do his best. The next class meeting after, the whole group rallied round him and helped him through the semester. My good friend’s son — now in his 30s — became mentally and physically disabled through malpractice at the hospital soon after he was born. He is wonderful, lovable, but sometimes scary and always exhausting. He adores me. Their big fear is that they will not outlive him. Shudder.

    Actually, my list is too long to write here. In every single one of these cases I felt — though I liked the students and admired their parents, and I love Mark — grateful, again, for not having been able to have kids. I don’t even think I could have coped with a “normal.”

    Liked by 3 people

    1. Thank you. I really liked hearing the stories of all the people you worked with and for. And the sad truth that, yes, sometimes children go to programs to give the parents a break is true. If I could find more places that could handle my son, I would put him in. As it is, he is at camp nearly all summer. It is a way to make work possible, for a little while longer. And also, to give him a chance to run and play with people who don’t need to keep him tied or held by his hand. I use every single dime of my taxes to make this happen. Best money I’ve ever spent.

      Liked by 2 people

  3. I feel for you both. Him because of the emotions, thoughts, and feelings he is unable to express. You because I can only imagine how exhausting it is to do this daily. You’re right about there not being enough support out there. I have students who struggle to find support also. Even though you said not to, I’m still going to tell you you are a wonderful parent. I can imagine the thoughts you had, but you know what? Having the thoughts is miles different than acting on them. You were able to let it out, cope, and move on. You still try to engage him in the community. You take him places and do things. You haven’t given up.
    I might suggest that you see a therapist or counselor if you are having a lot of these moments, though. Sometimes it’s helpful to have someone to talk to.
    💜

    Like

    1. Had a year of intense therapy. Both me and the kid. I appreciated it, but in a way, I told one therapist that it was like using a bandaid when you need a tourniquet. Some days, you can staunch the blood. Other days, it’s all you can do not to bleed out.

      Think I may need to cut back on watching crime dramas and medical programming. My analogies are getting a little grim.
      …distracted by door alarms shrieking…
      Okay, while writing a poignant reply, my son tried to escape the house. I love my new door alarms. If I haven’t mentioned it lately!

      I appreciate the advice and thoughts. I know it’s a wise recommendation. Thank you.

      Liked by 1 person

  4. Reblogged this on The Green Study and commented:
    I rarely re-blog the work of someone else, but this is a dear friend of mine. We Skype nearly every day, connected by our ability to laugh through tears and ability to be as awful as we want to be and no one says “boo”. Despite sharing our lives through wires and satellites, this post was like a gut punch. She deftly tells about her day with her smart, frustrating, funny and angry boy.

    Liked by 5 people

  5. I’m so sorry K. It has to be devastating to struggle so much and to watch your son struggle, and not have the resources you both need. Our system is so fu@#ed up sometimes…so much energy gets spent on creating the system that it becomes the benefactor, not the people in need it was designed to serve. Reading this post I couldn’t help but wonder how many stories like this are going on around us everyday.

    I can only imagine how exhausting it gets for you. I am amazed at the sense of humor you manage to display at times in spite of it. And I’m really glad you find some solace and cheer in the little things. I think “This too shall pass” is a pretty good tool. I know I’ve used it myself when I’ve gone through prolonged times of stress and grief. Sometimes it’s all we’ve got.

    Liked by 1 person

    1. Thanks. It’s good to be heard and recognized. I swear they should issue badges or something, for years of parenting. Maybe a mandatory PTSD session once every six months or so. I should write a book about it…though, it would probably be called “How Not to Raise a Child with Autism: the expectationless guide to downsizing your goals.”

      Liked by 1 person

  6. I don’t have any Normals or Little Fuckers or whatever you call them. Four kids and not a single one neurotypical and without behavioral disorders. I cannot relate to what you live with. I don’t think most people can. Whether you want to think you’re a good mom or get mad for us writing it, I can say for certain that you make brave and good decisions. Apparently, 20 times a day minimum.
    I can absolutely agree on the lack of funding, manpower, and programs you and your son need.
    You write beautifully. No degree is wasted.
    WHY THE FUCK DID THEY USE MARSHMALLOWS!?

    Liked by 5 people

    1. I take solace from the things my friends with ‘neurotypicals’ say. Like, eating boogers is universal. And no child learns to wipe their butt properly until they are forced to do their own laundry. It helps to remember no parenting jobs are flawless. But I try not to be entirely schadenfreude about it. Much.

      And, I know, marshmallows? Really. that said, it was a riot to see them flying everywhere but in the cups. The kids were standing two feet from each other, arms outstretched, practically touching and ‘swish’ nothing was going in.

      Liked by 2 people

  7. I came to this post because I follow The Green Study. It left me breathless and so very sad that as a society we leave so many families like yours without the necessary support. I parented two “normal” children and still had many days when I had those dark thoughts that you describe. I am sure you have heard all the nice platitudes that people spit out, and I know they don’t help. But I will be thinking of you.

    Liked by 1 person

    1. Nice thoughts are always appreciated. When there really isn’t a whole lot someone can do for an individual or family, at least sympathy and understanding can spread a warm sort of acceptance. It encourages one to carry-on, even through the darkest of hours.

      Liked by 1 person

  8. Love your writing and wanted to let you know there is at least one person who is greatly helped by it. I am sure there are many, I just am not easily able to get out and meet them. I appreciate your courage in sharing the real struggles parents of children with autism endure. Dealing with self-injurious behavior can feel like the most isolating kind of Hell so your work helps break through some of that. Thank you! Many days are devastatingly painful but your candor and strength are inspiring. They do pass.

    When life as a special needs parent is particularly brutal I have found refuge in Viktor Frankl’s book “Man’s Search for Meaning” like you with your audio book. It’s sad that it takes a book about the holocaust to give me strength and hope. I guess it gives me perspective and reminds me life is wonderful even with the difficulties. Also inspired by Mitch Albom and was honored to meet him at a book signing. I admire your perseverance to keep embarking on different adventures with your son despite sometimes challenging consequences. Thanks again for sharing your experiences. You are very talented!

    Liked by 1 person

  9. Just … wow. You picked me up by the scruff of my neck and dumped me in your reality, and I’m still reeling. It’s the best post of yours I have ever read – powerful, beautiful, gut-wrenching. And brave, because I know how hesitant you are to write about your boy.

    But seriously, my friend, people need to read this. And by “this” I don’t specifically mean this post. I mean posts like this, that make you laugh out loud and then whack you upside the head. Too often I’ve heard people comment disapprovingly about some kid having a meltdown at the supermarket, who “just needs some decent parenting”. Hell, I’ve thought it myself, back before I knew people with special needs kids and got a clue.

    You may have noticed that I’m focusing on the quality of your writing rather than the content. That’s because … I don’t have the faintest idea what to say … just meaningless blatherings along the lines of “I wish I could help” and “Well I can’t speak to the quality of your mothering, but I think you’re an amazing human being. Seriously. Amazing.”

    Liked by 4 people

    1. Thank you, Belladonna, your name says it all. I always appreciate encouragement in my writing. (Perhaps moreso than in my parenting. Writing can be assessed on a qualitative level, but parenting can only be truly evaluated on a Have-I-broken-any-laws-and-are-they-still-alive? basis.)

      I am never sure whether I am a voice for change/recognition or just a whining drone amid a thousand other cries for help in the autism community. It is very hard to tell the difference when you are the one doing the shouting. Thank you for listening and encouraging. Always.

      Liked by 1 person

      1. I really think you should send this piece to other publications – ones that pay – and ask if they’d welcome more of your writing. Maybe pitch a couple of story ideas. I don’t think there’s a person alive who doesn’t at least know an autistic kid, or one who is mentally off-center in some way. Yet yesterday afternoon, after reading your post, I got into a “discussion” with someone on Facebook who was asking, “But where are the parents?” in response to this article: http://www.kxly.com/news/local-news/9-year-old-boy-charged-with-assault-with-a-deadly-weapon-1/474704940. She just didn’t get it. I shared your story… but people need to hear the story over and over and OVER again to understand that some kids can’t be “fixed” through “some counseling and parenting classes”.

        Liked by 3 people

  10. I love this! It’s nice to know I’m not alone. The ripping of the paper! Ghaaa! My son does this obsessively 😑 he is going on 11 and purberty has started and I’m scared shitless. I’ve had to do allot of work to get him the help he needs… Still on that wait list for ABA. Fought SSI for 2 years to get him Medicaid for his disability. He is very (I don’t feel comfortable saying severe, so I don’t) autistic. But has OCD, ADHD oppositional defiance disorder (ODD) & anxiety issues. We do have a great support coordinator from DA Blogett St. Johns. They are great. It is insane how much red tape that you have to go through to get them any help. I love that you were real here. We all have those dark moments. He definitely broke me. But like the warriors we are… We get back up and keep fighting, because we love our little turds and someone has to. My child may be a little a**hole, but he’s my little a**hole. I love him immensely and yet, no one has ever driven me to the brink of insanity like he does. Thank you for this post. It made me cry a little because, you get it and it was good to understand and be understood.

    Liked by 1 person

    1. I think it facing down the parts that drive you batty help to face each daily crisis. And yes, he may drive me crazy, but he’s mine. He is my kind of crazy. (Sorry if this makes little sense. Child woke me repeatedly last night. I’m loopier than a bowl of fruit loops right now.) Stay strong. This too shall pass.

      Like

  11. I cannot say I understand what you are going through every single day, with far too little support resources, but got a small glimpse into your day…and I see a very strong, wonderful human being. And want to send a simple hug.

    Liked by 1 person

  12. The battle of the meltdown, the upset over routines not being met.. I live this as well and I totally get that not all days are never good or bad but may sometimes be “just bearable” 🙂 It is a special kind of sanity that we moms and dads of kids with autism have. Great read and totally relatable!

    Liked by 1 person

    1. Thank you fellow soldier in the autism trenches. I’ve often thought we should wear badges or have secret decoder rings so, when we pass each other in public, we can exchange salutes or just flash each other an understanding smile as we go by. Maybe there’s an app for that? Like Tinder but kinder. Maybe call it Stimmer?

      Liked by 1 person

      1. Haha, Stimmer would be awesome! It is always nice when we see another mama in public who understands the struggle of getting through Walmart without a full fledge battle. I know for my little girl, that place is a sensory overload. 😀

        Liked by 1 person

    1. I try to see the blessing in it. I’m not inclined toward positivity. But, today I’m on the road to vacation, and my son is safe at camp. This is a good day, and those are a blessing!

      Like

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