So many things we have missed out on.
Family gatherings. Town events. Festivities. Birthdays. Vacations... the list goes on.
So many situations that we avoided simply to make our life easier and to help us get through the day.
There were times we would attempt to be a part of the rest of the world.... and they almost always ended with a loud and winded ride home full of screaming and tears - usually from the both of us.😏
With our diagnosis came therapies. And with therapies came the tools and the confidence to tackle BOTH of our anxieties - one step at a time.
I learned to prep her. Prep her some more. And some more. Always have a detailed game plan. I learned there was no such thing as over planning.
I always help her design her escape route to a quieter place and our calm down plan if it gets to be too much and we need a break. We pre plan a few sensory items to take ahead of time. I include her in the planning as much as possible. I also learned that deviating from that plan, is almost always, a huge recipe for disaster. We cannot spring in any last minute decisions or surprises.
I always help her design her escape route to a quieter place and our calm down plan if it gets to be too much and we need a break. We pre plan a few sensory items to take ahead of time. I include her in the planning as much as possible. I also learned that deviating from that plan, is almost always, a huge recipe for disaster. We cannot spring in any last minute decisions or surprises.
Tonight we attended one of the biggest events in Summerland - The Summerland Festival of Lights. They estimated 15 thousand people this year. And for the Okanagan it was a very cold day! This is a big event with lots going on where there is a big count down to turn on the lights for downtown.
Our game plan!
4:30 eat dinner.
4:30 eat dinner.
5pm - start the long process of layering and getting dressed.
5:30 - walk down to the park
5:45 Meet her school at the stage for school performance
6:00 school performance
6:10 warm up at the church where it’s quiet, and warm for arts and crafts.
7:00 back to the Center for countdown and light up
7:05 fireworks! We brought noise cancelling headphones
7:20 - HOME!
I went over this plan with her including times and she memorized it instantly and definitely knew when 5pm was approaching to get started.
I went over this plan with her including times and she memorized it instantly and definitely knew when 5pm was approaching to get started.
We talked many times about how if her little brother (who is 3) started crying and wouldn’t stop that we would need to head home and immediately cancel the rest of our game plan. The one variable that we could not control and it was going to be cold and uncomfortable. The main thing was for her to sing and perform!
We talked about how the church would be quiet and there was a washroom there - usually the one place we can always go to get away from the crowd if needed. We talked about breathing and calm down techniques. And we talked about how once sensory got to be too much we could immediately go home.
So at 5:30 we were outside all bundled and ready to go!
I am so proud of my kiddo and how far she has come. She did AMAZING. She was happy. Killed it on stage. She made her friend a beautiful candy cane at the arts and craft table to cheer her up after a sad moment. We rushed outside for the countdown and light up and stood in a massively busy crowd.... cheered when the streets lit up and then thoroughly enjoyed the fireworks.
For a sensory kid... I cannot believe how amazing she did.
And this reaction to the fireworks made the last 7 years of struggles to get this far worth every second. I spent most of my time watching HER watch them and it was the best experience ever!
So good... that we decided to deviate from our plan and play one of the games - which equalled to over sensory and stimulation which led to the inability to make a decision which led to wailing and tears... so we made a hasty exit home. (At 7:45 she was in bed which was right on time with her bedtime schedule so it actually worked out quite well).
Side note: She has been very aware of her heartbeat when she has sensory meltdowns lately. She mentioned how fast her heart was beating when we were home so we did some deep breathing at home so she could see how it helps slow down the beats. We also talked about how sensory and anxiety controls our heart sometimes. (I hope those of you reading this realize how amazing that is for a kid on the spectrum that is normally not self aware!)
But... the hard end of the night aside....... the look of pure joy on this kids face made the night for me......
So I’m reminded to stay strong and remember that we ARE making progress... To celebrate each of these small victory steps. I definitely told her as I was putting her to bed how darn proud of her I am and how much her being happy makes me happy.
