Couple HOlding hands before autism

Before Autism: The Life I Took For Granted

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BEFORE AUTISM:

The Life I Took for Granted

Today I was thinking about the time before Jack-Jack. We had 3 children and traveled. We saw shows, ate at different types of restaurants, and I didn’t plan nearly as much as I do now.  Those carefree days are a distant memory. In my former life before autism, my husband and I walked along the beach holding hands. That is gone too. We plan more, prepare more, and both know that the past is just a reflection of what we no longer have. Our life was joy-filled before, but looking for joy in this life of autism seemed impossible.

Couple HOlding hands before autism

Normal Seems Impossible

As other parents watch their children leave the nest, they go on trips to Italy or Ireland, fill their days with babysitting the grandkids, taking yoga classes, and coffee with friends. However, those dreams and aspirations were a part of my past; the life I took for granted.

Woman Drinking Coffee Before Autism

I remember the past where I didn’t hold my breath as often as I do now. You know the feeling when you watch your child attempt to do something for the first time, but as they get older there are less and fewer firsts. However, with autism, I do a lot of holding my breath. As I watched Jack-Jack attempt to ride Go-Karts for the first time, I held my breath, said a little prayer, and remembered my past.

They say you never realize what you have until you lose it, and my past life is something I never appreciated. While I was living it, I only saw the mounds of clothes, the papers never graded, and the character flaws that I felt I was solely responsible for changing. My life before autism was ordinary. Entirely and utterly normal. 

Aching for The Normal I Had Before Autism

I will never again know those simple days where I was carefree and spontaneous. Gone are the moments that are a rite of passage such as prom, getting a driver’s license, and dating. My momma’s heart aches for those days for Jack-Jack.

Life Before Autism Family on Beach

Do I ever secretly think that this hand I have been dealt with stinks? YES! And I think those thoughts on even the good days. In fact, today, leaving the go-kart track, I remembered those days-gone-by. I reminisced about walking out of a similar place and the kids “fighting” about who had the best time, or who won the game in the arcade. I don’t even know if Jack-Jack is aware of winning or losing when it comes to arcade games, and I sometimes grow weary of the cards in my hand! 

When I am worn-down by this life, I need to begin looking for joy in autism. But that sometimes seems too hard. Did I tell you today was a good day? Yes, this was a good day when I was having these feelings. Even though it was a good day, there was a tinge of bittersweet. Today walking out of the arcade, I was joy-filled. But there was a touch of something else. A touch of “This stinks,” and “I am tired of my normal.”

Holding My Breath Doesn’t Seem Joyfilled

I am discontent with the feeling of holding my breath with each new encounter. Jack-Jack had navigated the track and enjoyed his time at the arcade, but while watching him, I waited with baited breath. I prayed and asked God for the day to be a good day. And I realize that I want to have a simple outing where I don’t always wonder if the day will be good or bad.

I want to just have a spontaneous life again. While I have found joy, I simply don’t want to have to ask 200 questions before we attempt a new thing. Every new encounter is filled with research and finding out about our destination. When is the least crowded time to go? What can we expect? How can we prepare Jack-Jack?

Gone are the Carefree Days Before Autism

So instead of purchasing our ride passes and watching my kids run to get into the queue, I talked with Jack-Jack about what to expect. We checked out both tracks and asked which would be better for him to ride as a first ride. I didn’t ride because I needed to be off the track observing, making sure things went smoothly, and praying.

As I watched Jack-Jack sit behind the Go-Kart with a huge smile, and I saw how much he loved the experience, there was a feeling of relief. But the ride wasn’t done. There was getting off the Go-Karts to worry about. Would he slow down when they told him the ride was over? I had a flash of Go-Kart employees frantically running after Jack-Jack trying to get him to stop. Yelling and screaming for him to come back into the pit.

However, all was well in Go-Kart land. Apparently, these Go-Karts were equipped with a self-braking system to slow down when it is time to get off. And I sighed a little sigh of relief.

Couple walking on the beach the life I took for granted

The Good News and The Bad News About Getting Older with Autism

There is good news and then there is bad news about Jack-Jack getting older. As he grows, it is apparent to more and more people that he is autistic. There are rarely questions such as, “What is his diagnosis?” But rather the comments have become, “I have a nephew who is autistic too.” So I guess the good news is that his disability was apparent at the Go-Kart track, but the bad news is, his disability is apparent!

While I watch other couples hold hand and stroll along the beach, I know that my days will never be spontaneous. If I want to have a spontaneous stroll along the beach, they will have to be planned moments. Every date, every outing, always getting a babysitter, always planning ahead. It seems hard to experience joy in these days, but somehow, we have done just that.

Looking for the Joy in Autism

How do I find joy in autism when life seems crappy? We have chosen to look at each day as a blessing. We have embraced the cards we have been dealt, and are thankful for the victories, no matter how small.

So how can you find the joy? You begin by looking at each day as a blessing and focusing on the happy moments.

What can you be thankful for? Don’t worry if you can’t say anything about your child yet. Find things that you can write down. Even simple little things. You have your eyesight. You can see the leaves on the trees. Pumpkin or apple pie.

Instead of focusing on the fact that you just had a curtain rod fall on your head, focus on the first sentence you child just said.

Join Me on a Journey of Looking for Joy in Autism

Write down five things you are thankful for today. Tomorrow do it over again. Running water. A refrigerator. Food to eat. Nachos. Coffee. The extra 10 minutes of sleep. Writing down these incidental items seems irrelevant, but it will begin to help you make a shift.

The shift happens so gradually. In particular, one day, you will be writing dandelions in your thankful journal, and then you will begin to see something in your child that you can write down. And it will feel like a win. As you focus on that one small item within your child that you feel gratitude for, embrace it.

In fact, you will find that the secret to finding happiness and contentment is looking for joy. When you begin to look and uncover tiny little nuggets of joy, you will see more and more. Uncovering one little blessing leads to huge blessings. It is similar to working in a mine looking for diamonds. Chipping away at the stone and finding little diamonds, and then one day, you realize you hit the mother lode.

To emphasize, it will be in that moment, that you say, “No matter what my circumstance is, I have found peace and joy.” And no external forces can take that away from you.

So join me in committing to writing down 5 things for thirty days. Follow along on my Facebook page and post those five things every day along with us!

 

Before AUtism pinterest image

Before Autism The Life I took for Granted

My life before autism

My carefree life before autism

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4 thoughts on “Before Autism: The Life I Took For Granted”

  1. T-Nina Hermann

    You are such an inspiration to me. Have you ever played Spades? Sometimes you get a really crappy hand that you can’t possibly bid on. It seems there is nothing there. But wait, if you bid NIL, you get 100 points! When this life is over, and we see the final score, I won’t be surprised to see that your crappy hand has outscored us all, over and over again. I do feel your pain, though, at the lack of spontaneity you are forced to live with, day in and day out. I understand the heaviness of your heart every time a new situation arises for Jack Jack, and the anxiety that it brings. I can only pray that Fid surrounds you with people who will support you, lift you up, listen to you, offer a shoulder, and every once in a while sweep you away for the odd cup of tea on an otherwise normal Tuesday. Hang in there my friend, God trusts you with this.

    1. T-Nina Hermann

      Not sure who “Fid” is. I’m pretty sure I meant “God.”

      1. Patty Moliterno

        T-Nina:

        LOL – You gotta love auto corrects! (And even if it wasn’t an auto correct, we’ll blame it on that).
        Patty

    2. Patty Moliterno

      T-Nina:
      I have never played Spades. Now I am going to have to.

      Thank you so much for your friendship and your words of encouragement. I think the worst part of this hand is that it has caused Jeff and I to have division that wasn’t there before. It has been a struggle to get back to a point that we trust our hearts with each other. That makes me incredibly sad for the years we were so distant. We are definitely in a process of finding a new normal.

      Blessings,
      Patty

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