The Autism Rollercoaster

I frequently say that life with autism is a roller coaster. Yes, it’s a much used analogy in autism land, but it’s so true.

Why you may ask? Well, I will gladly tell you! 🙂

I remember the first time after Austin’s diagnosis that I felt ok. I didn’t feel the sharp jab in the pit of my stomach every time I thought of how far behind his peers he was. I didn’t feel like crying as much. I felt happy and I was able to be optimistic about his future.

I remember thinking to myself “I must be over the grief of this diagnosis”.

I should’ve known better.

If there’s one thing I learned after the tragic loss of my dad, it’s that grief is forever. Sure, it comes and goes, it changes. It even fades over time. But then when you least expect it, even after 15 years, something will trigger it.

An old memory long forgotten, a movie, a question from my kids about “Grandpa Ron” who they never got to meet.

And just like that, 15 years melts away, and the grief hits as if his funeral was yesterday.

I shouldn’t have been surprised then when the time of feeling happy & hopeful came to end. Maybe a new behavior triggered it, or an evaluation with unmet goals, it’s always something different.

But it always returns.

We were on the uphill on this rollercoaster when Austin started making word approximations midway through 2017. The more he used his words the more optimistic I felt.

But then, his behaviors changed. His throwing obsession got worse and worse. Most of our days are spent getting the ladder to climb up and retrieve whatever he has throw on top of our cabinet, or, like today, to get his sneakers from where he threw them on the patio roof.

He was sleeping well initially after starting to see the chiropractor, but that came to an abrupt end. He is back to screaming all hours of the night. Rational thought and patience go out the window when your sleep is disrupted night after night by endless screaming.

He has decided to take his underwear/diaper off anytime, anyplace he chooses, including during the night. He pees all over his bed.

Yesterday he reached into his pull-up and I’ll spare you the details, but he removed the contents of it and got it all over himself. It was a mess, and I cried. Where will this end?

I flinch every time Austin comes near me. He’s been so aggressive: hitting, slapping, scratching, pinching, biting. He does all of the above to himself as well, and it breaks my heart.

Someone once said to me that with autism, when one area improves, another tends to regress.

I’ve found that to be very true, and it’s a lot of the reason for the constant ups and downs.

Yes, his speech is improving and I’m excited about that. But now his behaviors are worsening, and it’s draining us.

His behavior reminds me that even though he’s making so much progress with speech, he’s still going to have struggles in other areas.

He will probably always struggle.

Accepting that is hard.

Even in the middle of the really rough patches though,  there are always little things to appreciate.

Last night it was my mom watching the kids so we could go out with friends, and an encouraging note from my father-in-law. This morning it was Austin taking a break from throwing stuff to snuggle with me on the couch.

Will things get better? I don’t know.

Things will change, I know that much.

We never know where this journey with autism will take us next.

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7 thoughts on “The Autism Rollercoaster

  1. One thought comes to me as I read the emotion of your post and that is the Lord picked you as Austin’s mother as sure as he picked Mary to be Jesus’ mother on earth. I had the experience of being in a country where there were orphanages with children that were not necessarily orphans but had parents who were unwilling to cope with their disabilities and left them for the “state” to care for. How blessed Austin is to have you and Mike and his grandparents to care about him. Praying for you and Austin, your efforts are more than temporal, they will make an eternal impact on Austin.

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    1. Thank you, Howie for your kind words! I know you’re grieving right now as well we will be praying for you all.
      We are so thankful for Austin he is a beautiful little boy and the struggle is more than worth it.

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  2. My son does not have a diagnosis of autism, but does have some autistic tendencies. What I have found to be most helpful for him is behavior cognitive therapy! His aggressive behaviors have improved so much with cognitive therapy!

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  3. Hi Heather!
    I can certainly relate to this post. As you mentioned grief tends to fade, but it will always be a memory or moment that can cause grief to appear again. I’m guaranteed to grieve at after every IEP meeting. Even though my son is making outstanding progress and he’s super smart once I read that his social skills are low, he needs a bus aide, he gives answers to unasked questions, he repeats scenes from movies grief sits in.
    It actually happened when I received his report card a few weeks ago. My son always have straight A’s and a C in lisenting. I emailed his teacher to see why he dropped a letter grade in every subject. She said, the work is getting harder and he did not make any progress on state tests. I threw the paper down and I immediately started soaking🙄. I was cooking, listening to music, playing with the kids. Instantly I was sad. I thought to myself my son is smart and has overcame so much I will not allow one test to deter his progress and how hard he works.
    I kind of put it behind me, but honestly, it was still in the back of my mind and I started panicking about his future again 😐.

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    1. Yes exactly! I can be just fine going about life and then something happens or I get a reminder how far behind austin is and grief and panic set in.
      Connecting with other parents on social media and opening up in general has helped me.

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