What I Meant to Say Was…I Need Help

For a long time I thought…

“Autism was hard.”

Sure the years flew by. But in the moment it was like I was living life in slow motion.

My eyes were usually welled up with tears. No one ever told me that excessive irritability actually leads to a whole personality trait after a while.

Lacking sleep and basic nutrition.

Missing appointments because the bills still had to be paid.

“And… last time even the therapist told you to go home. She didn’t even know what to do. It’s just going to happen again. I haven’t slept at all and work is in a few hours.”

But he was wide awake. Goldfish everywhere. It was basically confetti.

Everything was so hard for such a long time, especially right after the diagnosis.

Admittedly life is hard for most people in some form. Most likely for me it will continue at some level of difficulty, because to me…that’s just life.

But “Autism” isn’t hard.

I would never say that knowing what I know now.

Because when I would say “Autism” it would imply Jackson.

Jackson is not Autism. He is Autistic. He is an individual. He has his own life, his own mind. And he is perfect.

Every fiber of his being makes me want to literally melt. Especially right now as he is currently cuddling me on the couch.

He just fell asleep…his little grin, I hope he has it forever.

Jackson is just a child.

As I hear stories from Autistic adults telling stories about their childhood, I always listen.

When I say I listen, I hear them. I hear the good stories and I hear the bad. I take in every vivid detail of the story and envision it. I can see both sides and I take every opportunity to learn and empathize with things I might not yet understand.

What often goes so unseen is the individual situation, the behind the scenes support or lack thereof.

I want to know…

Who went and made sure they got up…that they had the motivation, drive and physical ability to get up…to get them through dedicating 30 hours a week to therapy all of a sudden?

Who made sure that when they were going on two weeks straight of sleeping  a maximum of three hours a night, while working and running a household, with no end in sight, how did they deal with that?

Who was able to dedicate their time to assisting them throughout the change?

Who or what was it?

A supportive husband or wife? Their relatives? Maybe their friends? Great resources? A really accommodating employment situation?

Because we all need to sleep, eat, maintain some sort of social interaction and have shelter. Right?

Well when your life just wasn’t set up that way…

That confetti of goldfish will break you.

The lack of sleep. The lack of nutrition. The overwhelming sense of feeling nothing. Just going with the motions.

It was having the same bad day over and over again for weeks at a time.

The purest form of burnout that now is your life.

The literal tantrums I have thrown over these goldfish. The tantrums he has had over not being able to throw and crush the goldfish.

The lack of control. The power struggle. The lack of a break, for either of us really.

These little things always make things seem harder than they are, more devastating than they have to be.

Something as simple as a toddler’s tantrum can seem like the end of the world.

But when you add in everything else…

The fight for resources. The fight for his right to education and basic therapies.

I wouldn’t even be able to afford a baby sitter considering most people are not used to caring for a child with special needs. Or if they are, they deserve to make a living wage, money that I do not have.

And programs take months to simply start them. Then it takes months to get to know my son, to actually understand him.

Yet the employment turnover rate for the therapists he requires is steadily increasing.

The fight for real social interaction.

People will text you, they will. Text them back. As a matter of fact, everyone might text you.

They all love you and miss you. Your friends are going out! Tag along!

But how could you? Did you list all of the reasons you couldn’t go? Maybe just pick one.

“He will not even go inside another person’s house. It has to be outside. And another winter is approaching.” Who came and made sure you got out of your pajamas? Who sat with them while you took a shower that one time?

Did you ask for that? Was it hard for you to ask? Did you ever ask them again? Did they feel pressured? Was it weird? Could they just see it? Did they actually know what was going on?

The real story.

Were they already there in your life? Did they come to you? Was that hard for everyone involved? How long did your adjustment phase last? Did you have support?

If you didn’t have “adequate” support, you have to be thankful for the support you did have. Someone else’s “not enough” was most likely all they had.

If you are new to this life and you haven’t heard it yet…

Be thankful for the support you have but never stop looking for the support you need. Whatever that may be for you…

Never stop looking for it. Never lose hope that you will one day have it.

You have to know what you need. You have to sleep. You have to eat. You have to have a lot of support in all forms.

More than you are used to and more than most people have to give you.

And sometimes you have to swallow your pride, telling people the deepest depths of your soul to get what you actually need.

You have to tell them…

How hard everything is. How not okay you are. And that it sucks.

You have to be social in some form. You have to seek out information and resources.

Eventually after seeking the support you need, whatever it may be…those little efforts by everyone along the way, those sought out resources and information, the social interactions and people you have met along the way…

They will fuse together.

You will feel an adequate support base. You will feel rested. You will have patience. You will know it can and will be challenging.

But you will feel better today.

You make the effort to understand. To listen. To learn. You communicate with your child.

You see that the situation had a solution.

You feel motivated. You have hope. You can do this.

Because “Autism” isn’t hard.

That statement to me no longer even makes sense.

Society’s standards of living keep you in your own world and everyone is rightfully so caught up in theirs. Struggling like you in some form. Just trying to keep up.

Because “Autism” isn’t hard.

What I meant to say was.. I needed help. Written by, Melissa Weatherspoon

Hi I’m Melissa. I share my story at My Journey With Jackson about my son Jackson who was diagnosed with Level 3 Severe Autism and cognitive delays. This journey has been gut wrenching to say the least. I started my page for awareness for caregivers. I was struggling so hard… but recently learned the benefit of really advocating for my son as well as the benefit of connecting with others who have similar lives.

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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.