June 3, 2022

At the Boardwalk

Posted in Uncategorized at 8:35 am by autismmommytherapist

This week in the 90-something degree heat (I’m a glutton for punishment) I took my nineteen-year-old severely autistic son to our local boardwalk, something I’ve been doing for sixteen years, for the most part until recently without an issue. I won’t lie and tell you in the beginning it wasn’t rough. I have a few permanent bite marks on my shoulders from when he was little and I could still carry him, and in those days a trip might stop almost before it began. But I perservered with him because I knew in my heart it would be something he eventually loved, and equally important something he could do through adulthood.

And eventually he learned to love the rides and the pretzels and the long walk on the boards, and it was one more blessed thing I could do with him on my own.

Since Covid has struck, that ability to take him on my own has been sorely compromised. We didn’t go for about a year, and then last spring I went with my sister-in-law for the first time in twelve months and it was disastrous. Justin insisted on going in the Fun House which he hasn’t wanted to do in over a decade, which is not a great place for him. We did that, then he wanted to go back in through the exit, then wanted to explore a locked door that lead to the underbelly of the attraction, then completed the trifecta by refusing to leave after wanting to go in a second time. I had to call my husband and brother-in-law to come get us, and it took the four adults to get him back into our car.

Not a stellar outing for us.

I managed to get him there a few more times this past summer with help from our friend who is a strong young man, and I definitely needed his help from thwarting Justin from going on one ride that isn’t safe for him (a centrifuge that is the inner circle of hell) and from keeping him from trying to go on every ride in the park, even ones he’s too big for anymore. We pulled off these visits fairly successfully, but I was exhausted at the end. The boardwalk is supposed to be fun.

And it is my hope, with a wonderful behavior plan by his school’s BCBA, that it will one day be fun again.

We tackled Jenks in the heat the three of us, my boy, his BCBA, and myself. We started teaching him to use a long strip I created of pictures of rides, him eating a pretzel, and my car, to give him a sense of what comes next on these outings under the new rules. The goal is to get Justin to go on three to five rides (all appropriate ones for him), eat a pretzel, walk the length of the boardwalk, and go back to my car.

And that, our excellent BCBA reminded me, will take practice.

So over the next month I will harangue my husband and our family friend to get down there, and get Justin accustomed to the new rules (which aren’t really that much of a divergence from the old) so that eventually I can take my boy back, just him and me. I will let you all know how it goes.

The truth is I’ve had to let some things go as he reached adulthood, as I would with any child. But I’m not ready to give up on this. It’s too entwined with memories of him as a little boy, with the smells of the sea air and the pounding of the surf and the solid feel of the boards. Since he developed tic disorder five years ago he doesn’t display joy as he once did, but I know some is still in there.

This is a place of joy for him. And I am determined to win it back.

With fingers crossed, and a plan from ABA, I hope to do just that.

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8 Comments »

  1. Grandma said,

    ❤️❤️❤️🙏🏻🙏🏻🙏🏻

  2. Alice said,

    Wonderful to read how he adjusts. I hope the Boardwalk will always be a place of fun, laughter, and a beautiful bonding moment for you.

  3. tallgirl79 said,

    I know this is hard. My daughter is 16 and I have scars from when she was tiny so I understand. I have bipolar disorder and I don’t know how you are able to do all that fighting. It tires me out and I just can’t. My daughter loves the beach and the like but doesn’t have severe autism (she has a moderate intellectual disability and autism). You are a powerful woman. Raising children and adults with special needs is not for the faint of heart.

  4. Therese Ojibway said,

    I stopped going to Jenkins years ago. It was too crowded and overstimulating for me, let alone Clinton. You are brave to keep up your efforts. If Justin can ride a bike or if you have a tandem bike, or if he likes to walk, I have found Sandy Hook to be a great place. There is a five mile bike path, lots of it shaded, and trails for nature walks. It’s much more restful. And since it’s a National Park, you can use the disability pass you get through the National Parks to get in free or at a reduced rate. If you’re biking, they usually let you in free. You can swim on the Ocean side or one the calmer bay side of the ‘hook’.

  5. Kimberlee,
    I admire your tenacity, persistence and ability to draw some positive gain from every event. There IS a place for you in heaven. I know this because you do this not to gain heaven but out of love. Never give up kid.
    -Alan


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