When Things Don’t Go Well, We Dust Ourselves Off and Try Again

We had an outing with J’s team mates this weekend and I basically set this event up for disaster. First mistake, I scheduled a visit with grandma and grandpa Saturday night. He stayed up pretty late hanging out with his grandparents and I didn’t state the importance of getting him to bed at a specific time either.  It had been a while since he slept over so I forgot how out of sorts the transition back makes him. I didn’t even stop to think that it would have an effect on his behavior for the outing.

Before we left for the party we had dinner and I gave J an ice cream cone for dessert, mistake number 2. The event was on a Sunday evening normally I like to be home by 6:00P.M. on Sunday nights to give J time to settle before he starts the week. His behavior had been so good lately that I thought it would be ok. Mistake number 3. The party was at one of his favorite places so I thought it would be awesome for him to experience it with his buddies and didn’t want him to miss the opportunity even though it didn’t coincide with his routine.

When we go to this place as a family we tend to go late at night towards closing when most young kids aren’t there, since small kids are J’s biggest trigger. Being that this was an event for kids on the spectrum I figured it was private and closed to the public, but I didn’t ask, and it wasn’t. Mistake number 4. There were little kids everywhere and the noise level was up there, something I didn’t prep J about. It was definitely too much for J. His dilated eyes darted everywhere and he couldn’t keep still. He was clearly over stimulated and very uncomfortable. We decided it best to go.

As we were heading over to the area where our party was congregating to say our goodbyes, J’s behavior spiked and he started to gear up for an outburst. Within seconds he honed in on this one little kid and lunged to grab him, something he will do when he has reached his max. He usually just squeezes the person wherever he grabs them, but sometimes the squeeze is very hard and definitely scary to a small child, as my boy is 5’9″, 130lbs. I stopped him just in time, looked at the kids father and mouthed “I’m so sorry” as I escorted J outside. I told him “you do not grab little kids.” I followed it up with a punishment of no iPad for the rest of the evening and took him home.

It had been such a long time since we’ve seen this behavior from J, so long since we’ve had to leave some place because he was overwhelmed. The place was too loud for him, his triggers over ruled his ability to cope. On the ride home J went on crying and repeating his usual “remorse script”. To those of you who don’t know what scripting is in terms of Autism, it’s a phrase a child with autism will repeat over and over, sometimes they learn it from a movie or overhearing someone say it. To someone unfamiliar with them it would sound irrelevant or like nonsense, but I knew this particular one’s meaning having heard it similarly used before. It meant “I’m upset that I messed up, I’m upset.”

As I drove I tried to tune him out and began to dissect what just happened. Unfortunately when it comes to J, I’m a dweller, tend to over analyze, and I am my toughest critic. Besides the 4 mistakes I listed above, I found several more things I could have done differently as I replayed the last 20 minutes over in my mind. It took every ounce of my hormonal second trimester self not to cry about it in the car. When we got home I asked Big J to get little J ready for bed, I needed a moment to just cry it out and deal with the emotion away from J. I was feeling so disappointed. Disappointed because he grabbed a little kid, because he couldn’t enjoy himself with his buddies, because I couldn’t do anything about it and I felt like I failed him, like I let him down.

It still might have gone the same way no matter what preparations I would have made, the thing is, I would have felt better about it personally. It would have just been something J couldn’t do and I would have been OK with that, but when he falters because I didn’t prepare him enough, I feel like a failure. Although it may have been something I have zero control over, when I don’t prep well, I feel like it’s completely my fault.

When I do this to myself my husband tells me “nobody likes a Monday morning quarterback”, it’s his cheeky way of telling me it’s over, it happened, just do better next time. And he’s right, I can spend so much time beating myself up, listing my mistakes, that I miss the fact that we tried! We tried to get J together with his buddies, so what if it didn’t go perfectly, we took him out.

“Nobody Likes a Monday morning Quarterback”

He made a mistake grabbing the kid, but everyone is OK and it was an opportunity for him to learn from that mistake. All kids make mistakes and so do parents. Things won’t always run smooth, it’s what we do afterwards that defines us. It was a learning moment, for both of us, as parenting a child living with Autism tends to be. A moment to see our mistakes, deal with the consequences, forgive ourselves and hopefully do better next time.

-JRED

Getting Outside with Autism

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J and Grandma @ Times Square, NYC

J had this project over spring break that was clearly to get us parents out of the house and more engaged with our kids. I never mind assignments like this, anymore, because it’s something I kind of assign to myself. It’s not always easy to go out with J but I always feel better after I brave the unknown and conquer. There was a time during my son’s diagnosis when I did not want to leave the house. It was right around the time when his tantrums were becoming out of control, around nine years old. He was no longer small enough for society to disregard and he wasn’t obviously a special needs kid since his physical development was above percentile. Which meant I got a lot of dirty looks and judging eye rolls from strangers who all too quickly summed us up as a young mother and her ill-behaved brat. I felt so much pressure and stress every time we walked out the house. What if something set him off? What if I couldn’t control him? What if he hurt himself or others, or me?

After several very intense, exhausting tantrums in public, I was done. I imagined people thinking “why doesn’t she just keep him home?” So I did. I did all my errands during the day while J was at school so I wouldn’t have to venture out with him. I figured this was just the way my life was going to have to be now. Luckily I was working part-time when all this started happening so I had some weekdays off to take care of everything without having to drag J along with me. Although life was less stressful for me I realized his tantrums were becoming worse. I was now having difficulties at family gatherings and little things like neighborhood walks. He began to show signs of his now infamous sensory trigger, young kids and their loud high pitched yells.

I hated the path we were going down, he was only nine, I couldn’t really keep him inside forever, he wasn’t Bruce Wayne living in a mansion with all he needed and I couldn’t afford an Alfred to look after him. I wasn’t doing him any favors. He had to learn how to function in society. What would he do as a an adult when he needed to eat, or go to work, or visit a friend? I had to give him these skills no matter how terrifying the task seemed.

I went through a long process to get to the place we are currently at and although it is not perfect , we still have some difficulties, I have the tools to handle most situations. It’s what I imagine being on the bomb squad must be like, your still terrified that this explosive device will go off and obliterate you and everything in a 10 mile radius but the knowledge of how to handle it gives the feeling of control that allows for the confidence to finish the job successfully. Once I knew the triggers that set off J, I knew how to strategize for them. My confidence and preparedness not only calmed me but it made J less anxious as well. He could see I was going to work with him, we were going to get through this together as a team. I understood he needed my help and that was a comforting thing for him.

Anytime we go into “uncharted territory” this is how I prepare:

  1. I explain to J simply WHERE we are going, WHAT we will be doing, WHO will be there, and WHEN we are coming home, if necessary and time allows, I will write it out for him on a dry erase board the night before and add it to his calendar ahead of time.
  2. Noise cancelling headphones that attach to his iPad, fully charged and loaded up with all his favorite apps, songs, and videos so he can block out sounds that cause him distress.
  3. A good night sleep so he has the energy to handle his sensory challenges better.
  4. Back up tech like an iPod or cell phone with some songs or games on it and extra batteries for his headphones.
  5. Chewing gum. In the past I would also bring clay dough, or Theraputty to help relax him. Theraputty Link
  6. Keep the sugar intake down and give him lots of water.
  7. Research the place for my own knowledge where it is, what it looks like, what we can expect.
  8. Know and respect his limits, if it wasn’t part of the original plan don’t push it.
  9. Ignore judgmental people, easier said than done but self explanatory

When I can do all these things J usually keeps calm and even enjoys himself most of the time. Planning is a big part of our lives as you may have noticed from previous blogs. A little planning goes a long way for J and for my confidence as well. What are some strategies you have adapted to help with your special needs child’s triggers? If you have any questions or just want to share your success stories on getting outside with Autism please comment below.

-JRED

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