I Can’t Turn Off The Worry

In my recent viral video, backlash came over several topics. One that surprised me the most was the anger over me describing how having an autistic child has affected my mental health. How the worry over his safety and his future has changed everything.

I had no idea that would anger people. It’s a normal conversation topic whenever I get together with other moms who have children with special needs. We talk about the stress, anxiety, migraines, ulcers. We complain about how our sleep is affected. Our sanity. We joke about self care.

If you live it, you get it.

Even today though, almost two weeks later, I still cannot fully understand the backlash. I was called selfish. And let me tell you, that was the nicest of the insults that were hurled at me.

It appeared to some that I don’t think about Cooper during my times of worry and selfishness.

Which, couldn’t be farther from the truth.

All I think about is my son.  My happy, silly son. I like to tell people, Cooper is fine. Every day is his best life. It’s the rest of us you should worry about. The families that is. The parents, grandparents and siblings that worry. The protectors and the advocators.

I am not a person who worries. By nature, that is not me. I don’t dwell. I don’t live in fear. I am relaxed. I am not a helicopter mom. I don’t hover.

Having an autistic child changed all that in me.

I worry about my son more than I can even put into words. I worry about his future. I worry about bullying. I worry about his health. I worry about his safety. I worry about his happiness.

My son is a 70 pound somewhat gentle giant. A gentle giant who sees no issue with pushing someone that is in his way. A gentle giant who sees no issues with running into a busy street or walking into a pool.

I am his mother. A role that I don’t take lightly. And I know the safety concerns. I know every single one. I know his triggers.

My sole purpose on this earth is to keep him safe. To keep him healthy. To give him his best life.

And some days, that purpose feels really heavy and scary. It feels unknown. And it feels impossible. It feels like it’s affecting my mental health. It feels like I need to talk to someone about it.

My son sees no issues with diving or running into oncoming traffic. I know this for a fact. I know because I am the one holding onto him. I call it the death grip. Cars, people, water, bridges, all provide no danger or fear to cooper. He doesn’t know stoves can be hot. Or that knives can cut. Or that outlets can electrocute.

He doesn’t know people can be dangerous. He has no concept of strangers. He doesn’t know to look both ways before crossing the street. Or that he needs a coat in the winter. Or shoes to go outside.

He doesn’t know glass in picture frames can cut him.

He sees no problem with wandering out an unlocked door. He will run, head down, while looking back, to the perimeter of an area.

He does not call out if he’s hiding. He doesn’t respond to stop. Or wait.

I am so unbelievably, freaking, over-the-top scared that something is going to happen to him. That I won’t be able to keep him safe in the community. This is the pressure I am referring to in my video. He is not a little infant sitting on the floor. He is mobile. He is a runner. An eloper. And he sees no problem with it.

He is only now learning to tell me when something hurts. Although he can’t pinpoint the pain. Or really communicate about it.

I still do a dozen finger sweeps a day. A finger sweep is when your infant or toddler is mouthing something they shouldn’t be. I do that with my seven year old. He puts everything in his mouth.

I still worry about choking. That’s supposed to go away as children get older. It hasn’t for me. Choking is a very real fear in my world.

He still has no awareness.

This means if something happened to mommy while we were all home alone…Cooper would not notice or understand. He would not walk to the neighbors like my five year old. He would not call 911.  He would not scream for help.

The thought would not cross his mind.

He is 7 and he can’t grab himself a snack or a drink. He wouldn’t know how to get water out of the faucet. Or chips out of the cupboard. We still feed him.

He has no self care either. None. Right now it’s not that hard. Although dressing, cleaning, and bathing a seven year old boy is different than a little one. This mama thinks about the future. I will be scrubbing his feet in the bathtub and look into his beautiful eyes and wonder if we will be in this same position when he is a man.

And then there is preparing for his life after I’m gone. Who will love him? Who will do all of the things that I gladly, willingly, lovingly do for him?

Who will make sure he isn’t financially, emotionally or physically abused?

There is a weight that accompanies raising a vulnerable child. It sits squarely on the parent’s back. Some days, it is lighter than others. Some days, it is suffocating. And it doesn’t go away after 18 years.

This worry, the worry for his safety and for his future, doesn’t go way ever.

While my five year old can play safely in the back yard, walk with mom down a street or go from the car to a store, his older brother cannot. He knows scissors cut. He knows stoves are hot. He is aware of big trucks and loud dogs. He knows he can’t just jump into a pool.

Cooper does not.

Before someone bites my head off, I’m not saying that he will NEVER have these skills or awareness. Because I don’t know the answer to that and we are working on them every single day. That is the goal. And we aren’t giving up.

But right now, today, my son does not have any of these skills.

And because if it, I can’t always sleep. I can’t turn off the worry. And I appear selfish to people that don’t understand.

I am his eyes, his ears, his voice, his lifeline. And it may be forever. That is a very possible reality. I may still be holding his hand from diving into traffic when he is 30 years old. I don’t know. I will be almost 60 years old. I doubt I will be as nimble as I am now.

Mother’s like me feel like they can never die because we can never leave our vulnerable children alone. We know we need to eat right, drink more water, get 8 hours of sleep and exercise. But we also don’t know how.

This is the kind of worry that only a parent of a special needs child can understand. It’s unique. It’s heavy. And whether I’m supposed to admit it or not, it’s affected my mental health.

I want to end with the fact that I’ve started having nightmares about keeping my son safe. I wake up in a panic covered in sweat. In the nightmare he isn’t listening to me. He is running. And I can’t stop him. Sometimes he is running towards a bridge. Sometimes its a train.

And then, he’s just gone.

This fear is real. And I know someday may come, when leaving the house may be impossible.

I know I am not alone in this.

And until you’ve walked in my shoes, you will never truly understand what it feels like to carry the weight of a vulnerable child.

And if you don’t have these worries about your child, you are lucky.

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Comments

  • Jen

    March 8, 2018 at 9:17 pm
    Reply

    I totally understand where you’re coming from and until someone has experienced what you have they have no room to talk. Both of my boys […] Read MoreI totally understand where you’re coming from and until someone has experienced what you have they have no room to talk. Both of my boys have autism. My 9 year old is the aggressive one and he weighs 90 lbs and somehow turns himself into the Hulk when he’s having a hard time. It’s hard knowing that I literally can’t control him if I needed to in a public place. Our home is modified how we need it to be to keep him from escaping, but it’s very isolating. Our 7 year old is nonverbal and also makes me very nervous at times. Neither one of them really understand danger, and I have a lot of anxiety constantly about it. I’ve been taking Xanax to sleep because my mind won’t stop. The future can be really hard to think about, but I constantly have to remind myself to take it one day at a time and today was a good day. I hope yours was too! Read Less

  • Angela Juso

    March 8, 2018 at 9:23 pm
    Reply

    Hi sending you a great big hug from Australia, I so get it and feel your pain everyday, it's a never ending worry isn't it? […] Read MoreHi sending you a great big hug from Australia, I so get it and feel your pain everyday, it's a never ending worry isn't it? However you have proven that you are strong and you have heaps of support out there, haters be dammed, we know our reality and we embrace it with all the love and strength that we can musterxx I have just started a blog on facebook called Asperger's House if you get a chance visit xxx Read Less

  • Valerie

    March 9, 2018 at 6:11 am
    Reply

    To those who don’t worry... bravo, I guess. Maybe the ability to not worry prevents mental health complications for them. I worry everyday - still. […] Read MoreTo those who don’t worry... bravo, I guess. Maybe the ability to not worry prevents mental health complications for them. I worry everyday - still. I sleep with my door open at night. I’m afraid to turn on a fan to help me sleep because what if Jess needs me and I can’t hear her. My ambient sounds that help me sleep remain on low volume to where I almost can’t even hear them. I worry Jess will get lost when she’s out with caregivers. I worry she’ll choke on another chicken nugget. I worry she’ll get a serious infection from picking her skin. I struggle with mental health sometimes. Sometimes the health part is good, and sometimes it’s bad. Sometimes the weight of this life presses down on me and I’m lost in an abyss. We are allowed to say these things. We can say them and at the very same time say that we have a good life. We’re blessed. Our children are happy. They are happy because we carry the weight and we take excellent care of them every single day. We are supposed to worry. It means we care. It means we love. It means we put others first. I think the worry makes us better. It pushes us to seek better solutions. It pushes us to keep our children safer and better cared for. 💕 Read Less

  • Susan L. Anderson

    March 9, 2018 at 7:01 am
    Reply

    Hi Kate, I am floored how anyone could call you selfish. Clueless much? Obtuse?! I could write so much here, but am on my phone, sooo.....please […] Read MoreHi Kate, I am floored how anyone could call you selfish. Clueless much? Obtuse?! I could write so much here, but am on my phone, sooo.....please consider an advance reader's copy of my book, Paul's Prayers. Email me if I can get a copy to you. You have nothing but admiration and support from me. And prayers, always rosary prayers. ❤❤❤ Read Less

  • L

    March 9, 2018 at 8:36 am
    Reply

    Would those people who insulted you prefer you NOT worry about Cooper? Prefer it if you left the stove on and just hoped for […] Read MoreWould those people who insulted you prefer you NOT worry about Cooper? Prefer it if you left the stove on and just hoped for the best as he wandered into the kitchen? Lackadaisically left the back door open while preparing dinner? Let him play with a bin of buttons and not watch for any going into his mouth? Casually let go of his hand in a grocery store parking lot? Some people will nit pick about anything!!! Unfortunately, they are probably miserable individuals and I'd wager a guess that most don't even have children with autism. Please ignore those asinine comments, and carry on! Do what you're doing and don't look back! Read Less

  • Ralphie’sMom

    March 9, 2018 at 10:18 am
    Reply

    I wanted to thank you for your blog. My son is 2 and we just have gotten his diagnosis. I am gutted. I’m so afraid […] Read MoreI wanted to thank you for your blog. My son is 2 and we just have gotten his diagnosis. I am gutted. I’m so afraid and upset. I’ve been going through your blog and videos and they have been a comfort, they help me not feel so alone. Thank you for advocating for Cooper, as you are helping to advocate for my son too. Read Less

  • Carmen

    March 9, 2018 at 1:46 pm
    Reply

    Ok what you are feeling (the backlash and the non understanding) is reminding me a lot of the stigmas and taboos and stereotypes associated with […] Read MoreOk what you are feeling (the backlash and the non understanding) is reminding me a lot of the stigmas and taboos and stereotypes associated with the addictions amd alcoholism specifically . Before Betty Ford cane out and said “hey I have this disease and I’m a normal functioning non homeless not drug addicted presidents wife! And I have this.” Before that, the general public had a perception that only “crazy ppl” were affected by disease. This was a bit before my time, but my mother talks a lot about to. It was not understood. No one could understand why the families were pulling their hair out with worry and distress. Autism is not widely understood. I didn’t know my own had it or what the word meant until his diagnosis! We are in a transition period. People do not understand. I believe this is why it’s happening. No amount of explaining I can do for my family will help them fully “get” my concerns. My own father thinks my son needs a good spanking and a talkin’ to bless his heart. A new generation needs to be brought up with the knowledge for people to conceptualize what we’re dealing with. This might 50 years, but it will happen. God bless you Kate, you are part of solution Read Less

  • Lplatt10

    April 8, 2018 at 10:22 am
    Reply

    I completely understand the crushing worry! Know that those who walk in your shoes understand!

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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