Friend, I Don’t Know What I’m Doing Either

I thought for sure I was going to be the perfect mama. Well, not perfect because let’s be honest here. But, I guess I thought life was going to be relatively easy. You get married. Have babies. Work. Live. Try and drink enough water. Exercise. Keep your kids from turning into little monsters. Teach them. Love them. Take them to the dentist and yearly check-ups. Find time for your spouse. Laugh. Love some more. And grow older. Retire. Be thankful.

I thought that was life in a nutshell I guess.

That was before I had a son with severe, nonverbal autism. That label. Labels that I used to run from. Labels that still make people angry when I type them or say them.

I say them because they are true. I say them because they get us help. I say them because they accurately describe my son.

My beautiful, wonderful, amazing seven year old who loves trains and being tickled and has nonverbal, severe autism.

Those words aren’t negative to me.

They make up my son. And they are every bit as much a part of him as his blonde hair and perfect smile. They are also woven into our family.

Some people say a person has special needs. I say our family does. And we wear that label with pride and honor.

Anyhow, when my son was diagnosed everything changed. Not immediately. But slowly. Like a snowball gathering momentum.

I immediately noticed that my parenting life was different from everyone I knew. I was facing big decisions while others were watching their children meet milestones. They were attending play dates and I was calling early intervention, visiting doctors, starting therapy, etc.

But it was fine. It was still fine. Looking back I was either naive or an excellent actress. Or both.

I thought we could keep living our ‘normal’ lives. I could be super mom and keep working, raise my other son, be a wonderful wife, be healthy, have hobbies and friends, all while coordinating care for a medically complex child with autism.

I just needed to be keep smiling. Keep going. You know that saying, ‘Don’t panic about the plane going down until the flight attendants do.’ That was me. I was the flight attendant. And I could do it all.

The plan crashed when we realized Kindergarten wasn’t working. For some reason age five was a huge turning point in Cooper’s world. In our world.

School is supposed to work for everyone. Every child I know goes to school. And once that illusion was shattered we had to start making really touch decisions that impacted the present and the future.

Our son had autism. The kind that schools can’t handle. The kind that no one talks about. Autism changed everything.

God, saying that out loud is freeing. I’ve been scared for a while to speak the truth. But, I’m back.

Autism impacted our careers. Our finances. Where we choose to live. Our friendships. Our family dynamic. Our decisions to have more children. Our mental health. Our future. Everything.

And I have a secret for you. I don’t know what I’m doing either. You ask me that friend. I hear it all of the time. You ask through email at 2 am. You ask when we run into each other into Target.

You ask how I know what to do about my child’s care. You ask how I know if I am making the right decisions. You say I seem so confident. You comment on how I am never scared. How I don’t cry like you. Or seem to be nervous.

Truth? I don’t always know. I had to figure it out just like you are. I had to make the tough decisions. The agonizing ones. The scary ones.

I cry. I’m so scared sometimes I can’t breathe. Accepting reality and having hope is the finest line you will ever walk. I know that firsthand. If I let myself realistically think about my son’s unknown future, I plummet into a rabbit hole. I think about who will care for him after I’m gone. And good God I am scared.

Sometimes when I’m putting my son’s shoes on or washing him in the bathtub I’ll look up at his beautiful face and I will tear up. He’s getting so big. He should be talking to me about Star Wars and riding his bike. I should be signing him up for activities and thinking about second grade. I’m not though.

I am so scared sometimes. I have no idea what I’m doing. I was given the gift of a vulnerable child and some days I don’t know if I’m strong enough to do it. I don’t know if I’m making the right decisions.

It’s overwhelming.

So, I try not to think about it. I try to live in the present. My son is happy. He is smart. He is safe. But, we are the adults. We need to plan for the future. And here are the few truths I’ve learned along the way.

The first thing I want you to know is that I am still waiting for my autism instruction manual. It never came in the mail like I assumed it would. Yours won’t come either. Nor will you follow the typical path. So throw that out the window. Just forget about it. Your will need to create your own path now. And your path will solely be your own.

I’ve also learned that no on is going to tell you want to do. You (and your spouse) are going to have to advocate for this little human. You are in charge and you know your child best. The first time I had to say to a doctor….’this isn’t right’ I thought I was going to throw up. We are made to believe that medical professionals, teachers, social workers, etc., know what’s best for our children. And yes, many of them are there to help. But know that you are the expert.

The decisions ultimately fall on you. I remember being faced with large medical decisions and care decisions and thinking in a panicked way…’I’m not qualified to make these decisions.’ Only, I was. I was his mama. I was the person that had to make them.

I also want to encourage you to speak up whenever you can. You need to push and demand more. You may not know the answers. But you sure as hell know the questions. Often it will feel like you are completely alone. You are the only one pushing for answers. The only one who cares. It’s isolating and awful.

Don’t stop. Keep going.

Lastly, get ready for the biggest, highest stakes game of roulette you’ve ever played. The decisions you make are huge. They may not be popular. But you will make them. At different times in Cooper’s life we’ve stopped different therapies. We’ve ended public education. We’ve moved our family for better care. HUGE LIFE CHANGING MONUMENTAL decisions.

And in those moments, when I’ve put my son’s care first, I’ve felt the most alone.

My best advice, trust your gut.  My mommy radar has never lead me astray in seven years.

Just like you, I don’t know what the future holds.

Today, I focus on certain areas. Health, communication, safety and self care.

I want my son to be healthy. That is priority number one and can be complicated with nonverbal, severe autism. I want him to be able to communicate. I want him to continue learning and to be challenged. I want him to have comfort and know that he is loved. I want him to be safe. And lastly, I want to work on self care. Those are our priorities.

And I want our family to continue to grow and benefit from our unique path.

The rest is unknown.

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 and subscribe to our newsletter.