I Don’t Understand Why

I’ve numbed myself now for quite some time.

I went from my daughter getting a diagnosis to my son having autism too.

When I realized he was on the spectrum it really hurt because I thought he would be the typical child that would help with his sister and that I would be able to relate to on a level I feared my daughter might not be able to.

When he began his aggressive behaviors- this beautiful boy I love- that is when it became too much.

The whole process: PTSD on top of PTSD.

I’m pretty sure I went from denial to panic to this place. I’m not really sure where I’ve been but it’s the only place in my head that keeps me going.

I hide in that spot and I stay there.

I feel bad for my husband because I know he is in a place like that too and I cannot help him and he cannot help me because it just is.

Autism is and we have to keep going because another therapist will arrive soon.

My appetite has been gone for over a year now.

I eat for fuel without tasting anything. Sometimes I forget to chew.

I was ordered to physical therapy for back and hip pain but because I missed too many appointments I was discharged. What can I say?

I forgot I had a therapist coming for my kids or my son was having a tough time.

I guess I will deal with my back when it’s worse and I am older. I lust for very little anymore.

The things I was excited for only irritate me now. Music, movies, they annoy me.

I hate when people make recommendations but are completely unwilling to be part of any of it.

They shout out advice through a phone or message but refuse to be in the grime of it. Sure, yoga. It is good but how can I possibly go?

Do you want to watch my kids? And I don’t even ask for it so why make it so much worse. And when he hits you what will you do? What will you say to my son?

And it’s not just that.

We struggle financially. We struggle figuring out ways so that at least one of us is still at home with the kids.

It seems like everything is hard and on top of that my kids require constant attention: PECS, token boards, prompting, redirecting.

Both my babies are autistic.

The therapists come in and out through that door and I nod and I listen and I watch. I participate. I am here.

I catch tracks flying through the air and my husband dodges the garbage truck my son just threw.

I just don’t understand.

I just don’t understand why everything is so difficult. Everything.

Why do my kids struggle so much?

They’re on the spectrum. I get it. But can we just get to the car, this one time. Just once without a thirty minute meltdown.

From there to there. It’s so simple for everyone else.

Please. I’m only asking for one time.

Can we leave the token board, the incentives can we be spontaneous and flexible.

Can we live in that world for just five minutes.

Can I hand you a spoon without it hitting the wall because it’s ruined?

Can I accidently say the wrong thing or get the wrong shirt without screaming.

Can you sit in a different seat, can you get water on your shirt without stripping at the park.

No.

I’m slapped across the face. My son hits again now from behind and they take him off of me.

They offer advice. BCBA all of them. They all offer something. What am I doing wrong? I’ve taken the advice we practice it and he still does it.

What am I doing wrong?

I look at my son carefully when he is sleeping. I flinch as I realize this is the rare moment that he allows me to love him.

Why?

Why?

Why?

Why me? Why my children?

I love them so much. I fear for them. I worry for them.

I hurt seeing my children hurt. It breaks my heart.

They’ve been in therapy for over two years now and though many things have improved they are both still autistic and every single day I experience that.

Every single day they experience it.

Parents with special needs children experience that reality every single day.

Do you know what it feels like for your child to be left out? For it not to matter to anyone that their school bus is thirty minutes late?

Do you know what its like for your child to the pointed and laughed at?

I don’t want to carry social stories around. I don’t want adults laughing at her at the lake.

I don’t want strangers yelling at my son when he hits me at the store. He is two years old and people have called him a monster, mean, aggressive, and an asshole.

They offer me unwarranted advice about his future.

Really, you don’t need to tell me what you think.

In fact, you don’t need to speak at all. Either help me get him to the car or sit next to me in silence and let me cry.

Let me and my husband cry.

He is our boy! And I love him more than anything. Do not call my son those things.

I don’t want to explain to you that my children have autism. I want them not to have autism.

I want them to be regulated and whole and happy. I want them to be able to experience a hug instead of pushing away. They’re children.

I’m supposed to be hearing giggles and laughter and they deserve that.

Every day I get up and I try my best. I’m not happy about autism or going on about autism like it’s trendy or cool.

If I speak I sound like I’m complaining or asking for pity. It’s just that it’s my life.

I’m sorry that it’s not exciting. Why would you say that you feel so sorry for our daughter because, “We stuck her in ESY?”

The school wants her to go the extended school year because she has a disability!

I crawl to that place in my head and there I find refuge.

On to the next thing. Therapist is coming soon and I have to clean up.

Written by, An Anonymous Mother

Finding Cooper’s Voice accepts guest posts from writers who choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.

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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 our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.