Spectrum Warriors: Life Through The Autism Spectrum

Routines and the Meltdown Monster

I don’t know about any of you but when I was a child rules were meant to be broken. I pushed my boundaries at every possible corner. I was independent as can be, dressing myself and going outside to play while my parents still slept. I spent hours outside away from home playing at the park with friends, catching snakes and getting dirty. I was an only child and if you ask my mother I was argumentative, pig headed and determined. I was a child who wanted to try everything, experience everything that life had to offer. I took piano lessons, I was in dance, I played hockey, soccer, volleyball, basketball, I painted and sculpted, I had a love for astronomy and science yet I was also an avid writer and had even gotten a few things published in the school newsletter at 7. I was a force to be reckoned with.

Flash forward to life in our house and you will see a completely different painting. We are now a family who live and thrive on routines and rules to help ease the Monkey’s extreme anxiety. He is nowhere near independent and needs a lot of encouragement and months of preparation before he will try anything new. He over thinks everything and I wish he had the vocabulary to walk me through what he is thinking sometimes. I understand the anxiety and I can relate to it but only because I have been in 4 car accidents and have my very own real anxieties when it comes to driving. It is however hard for me to comprehend how a child as young as he can worry about things most 5 year old are not even aware of.

Routine strips and visual schedules work very well in helping him cope in a world he is unsure of. Do they possibly make him more rigid? Possibly, but I’d rather live with a little Monkey that gets upset over something not happening then to live with him when he doesn’t know what is going on or is anxious about what is going to happen. Yesterday was a prime example of how his not knowing leads to repetitive and anxious behaviours. Yesterday was out of routine and I, being the horrible parent that I am, forgot to add every change into his routine. After therapy instead of going about our typical routine, supper just the three of us then playing, he went to his grandparents place while we went to a 2 hour parent group meeting with other parents whose children are receiving treatment through the center.  So what did these changes mean for the Monkey? It means that he was on high alert, anxious and unsure about everything. Before therapy started he asked me what the letter J was called 10x. This is the way he copes with his anxiety sometimes he just fixates on something other then what is actually going on. What is disconcerting however is that he knows what this letter is but when he is overly anxious he forgets things he knew, his speech becomes repetitive as he tries hard to organize his thoughts and say what he is trying to say, he starts to pace, he toe walks, and he tends to rub his hands on his pants to wipe away some imaginary dirt. This anxiety however continued through the rest of the day and when we picked him up at my parents place he was wide awake and anxiously confirming the events for today. Had I remembered to change his schedule we may have been able to avoid some of the anxiety or at least possibly shorten the length of it but in all honesty the anxiety is present at all hours of the day most of the time.

Anxiety is one of the biggest hurdles that we face with the Monkey and as many adults with anxiety know it is a disorder that can completely consume your every thought. Everything needs to be introduced to him in a slow and gentle way usually over a slow period of time. For example the Monkey has always had issues going to the store even as an infant. All the bright lights, noises, people and smells they have always bothered him but in the beginning we didn’t realize what we were dealing with we just listened to the screaming and went on our business. In hindsight not dealing with the behaviour when it first presented itself at around one year probably made the issue worse but we thought he was just being a cranky baby. As time went on the behaviours increased and we began to have 30 – 60 min complete screaming, rocking, vomiting fits before going to the store. I would proceed to continue to dress him and get him in the car while he continued to have these massive meltdowns. Once at the store he would continue to meltdown and would not start to relax till we were on our way out. Once we were at the cash register and he knew the ordeal was almost over then he would calm himself a bit unless someone in line decided to talk to him and then well it be the end of the world all over again. After meeting Jessica and implementing the visual strips she had suggested, I started using a routine strip to show him what we were about to do before actually doing it. This did help a bit but he would still have hug meltdowns if Gary was going to the store and not taking him and huge meltdowns at the store once we got there especially if anyone talked to him.  We were all frustrated. It would have been easy for me to say, no more shopping trips for him but I refused to live this way. If we had to go to the store he was going meltdown or not.

It did eventually get better but it wasn’t until he started to talk that we truly learnt the best way of helping him. We were still using visual strips to get us to the store and as his comprehension was getting better these seemed to help even more. Then when we would get to the store the meltdowns would pick up again but now he would say, “There’s too many bodies, bodies go home,” he would tell us, “Bright,” and also cover his ears. This is when I learnt what the real issues were so instead of ignoring the screaming fit he was having I told him to close his eyes and cover his ears and mommy will rub your back. It worked. He calmed down and we were able to go about our shopping much more easily.

We then started taking baby steps to easing the anxiety. We made much more elaborate strips which showed which car we were taking, where we were going including any little stops along the way. We bought sunglasses for his eyes and we would rub his back while he rested his head on our chests. If we had a successful trip we would allow him to choose one Hot Wheels car as his reinforcement for doing such an awesome job. We started will small trips and letting him get the car first. Then we would gradually extend the length of each trip and have him wait longer and longer to get the car. This however worked for us. He was reinforced for positive behaviours and slowly the things he was scared of weren’t so scary anymore.

Today we still need routine strips for any trip that requires multiple stops but he no longer needs the toy as reinforcement, we rarely have meltdowns prior to going to the store unless he is already in an amped up state and he no longer wears sunglasses or needs to have his back rubbed as we do our tasks. It isn’t 100% there are days he will walk through the store with his head down, his thumb in his mouth and you can see he is trying with all his might to hold it all in but I will take being able to successfully go to the store 80% of the time with no major issues a win.

So my tips for you as a parent with a child who has sensory issues and extreme anxiety is this:

1)    If you are not already using visual strips you may want to start. Children on the spectrum tend to be visual thinkers especially those with a limited vocabulary. Allowing them to see what is going on before it happens allows them to understand what is being asked of them more easily.

2)    Watch for similarities in these types of situations which seem to trigger the behaviour to see what the triggers are. For a nonverbal child using flash cards with things like people or lights on it and asking them to point out what makes them anxious might help.

3)    Take baby steps. Once you have implemented the strategies you want to take start with brief outings that you know he/she will do well in so you can have a positive experience right from the start.

4)    Find your reinforcer, whether that be stickers, a small toy, food,etc…

5)    Lastly stay calm and consistent.

These same tips can be applied to other things as well not just outings. If your living life hiding away fearing the meltdowns that come from going to the store or restaurants etc… please try these tips. They made a huge difference in our son and we can now go out for supper as a family and enjoy outings much more then we had in the past.

Have a great day!




    1. Social Story 101 | Spectrum Warriors: The ABC's of Life in the Spectrum - Tips for Parents
    2. The Visual Thinker and Anxiety | Spectrum Warriors: The ABC's of Life in the Spectrum – Tips for Parents

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