Since I started my blog at Special-Ism, I have covered many topics. I have worn my heart on my sleeve and opened up to the world about some very personal experiences. Our latest challenge – advocacy. I am my daughters’ biggest fan, her most outspoken advocate and I will not let walls block her way especially when they have no good reason to be there in the first place.
I realize that children with anxiety do have to function in society just like everyone else, and that they do need to be challenged. We challenge our daughter, Sydney every day to step out of her comfort zone, however the key is to do it slowly and at a pace where she won’t crumble. But, sometimes we feel like we were moving backwards instead of forwards.
Our Biggest Ism
My daughter’s challenges in gym class are numerous which is why we have an Individualized Education Plan (IEP) in place and up until this point we were all content with her progress. The triggers for her are HUGE and her lack of participation during the forty minute period bears no weight on her ability or desire to participate; for her the gym is terrifying.
What started out as a poorly thought out comment by a new gym teacher quickly transpired into a complete shut down and full-out school refusal. Now her comfort level was compromised, her coping skills were maxed out, there were too many balls flying in the air so from a sensory perspective she was completely overloaded and she just broke down.
Spiral into Regression
Within the course of a week we started to see regression (verbalizing school refusal, crying, disrupted sleep, inability to cope with every day experiences, changes in classroom behaviour and body language) like we had back at the beginning of Grade 1. Her confidence, her independence, her coping skills and social skills have all skyrocketed but sometimes we hit a snag. Something HAD to change. At the time I thought to myself, “They just don’t get it. So how do I help them to understand?”
My Personal View of Advocacy
- Clearly thinking through my choice. Making sure I have figured out the best solution that I whole-heartedly feel is right for my child. It never pays to speak in haste.
- Giving the school as many facts as I can to further enable them to really get my point. Instead of just saying, “She has a hard time in the gym and I don’t think she should be there” I said, “She is overloaded from a sensory perspective. There are too many things going on in the gym that make her whole defense mechanism scream at her that she’s in danger. She needs help.”
- Appreciate that the school is truly doing the best that they can. Some situations just have them scratching their heads in disarray. We all need to learn from each other so telling my “team” in this case that I am very thankful that the matter was dealt with so quickly and that we didn’t leave it until it got dire made everyone feel like working harder for a resolution.
- Advocate on our daughters behalf (rather than ours). We have so many people who are involved in every decision it really is a good idea to have one person who is able to be the mediator for these changes. In our case, it is her teacher.
- Open communication. I firmly believe that in order for there to be success there must be an open line of communication on everyone’s part. The more open we are the better we can change the outcome to become a much more positive one.
My daughter was given a card on a key ring with some affirmations on it that she brings to class with her. It can sit on the bench or on her body but either way it is there for her.
She was given a timer and she set it for 10 minutes. When the time is up she can either go up to the resource room to spend some time with a Special Education Resource Teacher and they will do some activities based on what’s going on in class or stay in the gym and participate.
She is learning how to deal with those challenging times. In one class with this new plan she participated more than she ever had. Those “visible cues” are gone. I know she has it in her and when I see her reaching for those stars I know that the ladder we are building will never run out of steps.
What does advocacy look like for you?