How Can I Live Forever?

Once upon a time, you were just a small girl, but now you are almost grown-up.

At the age of 16, I have realized just how quick adulthood is coming, and how this is the time I dreaded for so long.

When you were little, and I knew something was different, I knew that something wasn’t completely right.

I didn’t know what to do, I was young and I was naive and thought that it would change.

I thought that maybe it was a” phase”, that the talking would come, that the potty training would come, that the screaming would stop, that the behaviors would change and well I was right, but also wrong.

These things did change, but some stayed the same. They just look different now because you have gotten a little older.

By preschool, they told me that “ something was wrong”, you could no longer be in the head start room, and they were going to isolate you into a special ed room, I didn’t understand, so I said okay.

Now, I understand that was wrong to not include you with all your peers. How I look back at that time and I could kick myself for how they treated you.

I still thought this could change, by kindergarten I knew that something was wrong, now the school was telling me this wasn’t typical.

I was now starting to believe that I needed someone to clarify so I could understand.

The school told me “ she’s too smart to have Autism”, “ she’s too verbal to have Autism”, its EBD.

So, again I believed this was a “ behavior” that may change.

Looking back at what they said actually enrages me about how little they actually knew about Autism.

Then the next year, things still weren’t getting better, at times I felt my girl was lost in her own world, and I didn’t always know how to help or break her free.

I decided to have formal testing done. I needed help, and answers.

Then the word came.

Autism.

The word that would play a huge role in our lives. It was bittersweet. Bitter because I was afraid of what Autism meant and sweet because now I know what it is, now I can put a name to it.

After the name was said, that’s when I felt the loss.

I sat alone on a bench outside the clinic and cried. I felt a lump in my throat, I didn’t know what the future holds for my daughter.

When doctors say words like “ low IQ” and “ Autistic Disorder”, some of your dreams for your child feel like a balloon that has been let out a window, you are reaching for it but can’t seem to get a grip and that balloon has just hit the wind and is now really going.

What can the future actually look like for her? 

Now, I finally know the “phase” theory is just that, a “theory”, not reality.

Autism the elephant in my living room.

You can’t ask Autism, to go home, you cant ask it to take a vacation or go somewhere for the evening. 

You can’t box up Autism and put it in the closet, and label it “ don’t open”.

Autism has shown up as a dinner guest and is not leaving.

As the years have passed and my daughter has done things beyond what they said was possible, I realized that a diagnosis is just a diagnosis, not a person.

I thought Autism defined her and she was Autism and now I realize that she is ok and Autism doesn’t define her!

She is so much more than Autism, and she shines!

She shines when she has empathy, kindness, love, and laughter.

She shines when she advocates for her own needs, she shines when she tells me her dreams, she shines with her beautiful artwork, she shines when she talks about her interests, and these are things I was told she may not do. 

I was told she may not shine, and they were wrong because she does.

She has blown away my expectations, and made me realize that anything is possible, how sometimes professionals are wrong and how we as parents should never just settle for the reality that is presented but go out there and push for a different one.

How we should dream big and shoot for the stars. Anything is possible.

Now, at 16 you are in your “transitional years” and these are the years I always dreaded, the years where we talk about your future and becoming an adult.

I always felt that if I live forever, then my love would always protect you from this world.

A world that isn’t always understanding of a person’s differences, a world that I have never been prepared for you to enter without me by your side.

For years talking about your future would lead me into full anxiety, panic mode.

I would always change the subject or say she can live with me. I couldn’t hear that possibly, just maybe there was a chance of independence.

Dare I say it, that possibly my girl wouldn’t need me the way I thought she did.

When we bought our house, one of the reasons that we picked it is because of the top level.

It is a playroom/ homeschool room now, but I always knew it would be her place to live as an adult. I couldn’t even fathom anything else.

Now, I know that she will live with us for sure past 18, but just maybe you may at some point she will want to have your own apartment, with assistance.

Just maybe she will want to live somewhat, dare I say it, there is that lump in my throat, she may want to be independent.

That’s the internal struggle, to push her enough, but not too hard and to let her fly.

To let her show the world that Autism has not defined her, that Autism is NOT some big bad scary word, that having Autism is okay.

I don’t ever want to stand in her way of shining.

God, let me prepare her enough, let me help to pave her way. Help me to let go when I need to, hold close when I should and allow her to lead me more.

Internally, I would also say please let me live until she is ready to shine without me. 

Now, is the time to keep moving ahead, with courage, strength, and faith.

We can’t go backward, the only way to go is forward, Upward and onward we go, into her future. 

Her story and her transitional years are just the beginning for me, her brother is 11 and he also is on the spectrum, so I have to do this all over again.

My girl is paving my way as a mother too, more then she will ever realize.

But, I still have to ask how can I live forever?

Written by, Sarah Sprenger

Sarah is a wife and mom to three. Two of her children are on the Autism Spectrum. They live in Wisconsin with their dog Maddie. She is the only type-A personality in their home which makes for an interesting dynamic. She is fueled on Coffee, Jesus, online shopping, sarcasm and lots of laughter

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