Can you imagine for a minute, wanting to do something but being unable to? Trying to accomplish a task, but having to ask for help ALL the time? Or being the age of 17 but at times being treated many many years younger? Or having the emotional feelings typical of your real age but because you are also affected by dyspraxia and SPD your feelings are not fully recognized or honored.
Now see Elizabeth, she has had a life full of therapies, hard work, and wonderful successes….and love, we can’t miss that but sometimes when I go to wake her in the morning I look at her and wonder what it must be like to wake up in the morning and simply be HER. I look at her sometimes and wonder what it is like to wake up and have everything be such work. From remembering how to do a skill, to calling up the words to express yourself. There is no doubt that Elizabeth is a strong, strong child, one who has made wonderful gains.
As I say in my book, there is always work to do and this still holds true, but our work now is not just teaching new skills, organization or thoughts, we are trying to teach self advocacy to Elizabeth. Or simply put the way to “speak up for yourself” We are trying to teach those working with her a new attitude to have when directing or teaching Elizabeth and that is that she should be seen now as a teenager trying to transition emotionally to an adult.
Those concepts, when written down and read by me just now, sound quite easy and doable, dare I say almost ones that don’t need said. But in the world Elizabeth works in, one wrapped up in these disorders, those two concepts are now critical to her growth.
The idea of teaching self-advocacy came about after Elizabeth’s very traumatic shut down in September. When her words and feelings could not be expressed well enough to have those at the school understand just how hard the day was for her. Had she been equipped with those words and the inner strength to express them, perhaps, action would have been taken sooner and the eventual shut-down avoided. But the actual teaching of this skill is so hard because each and every situation is different. Elizabeth’s mood and strength also need figured in. But so far we have had good successes. Including her telling the lunch ladies what she does and does not like on her tray, that she was getting picked up by Emily one day and that she did not want to go into the “haunted art room” in October. There have been more, but suffice it to say, Elizabeth is trying and so are we. Equipping her with words is like giving her power and strength. Seeing how much she likes “being heard” fortifies us. We are making a list of all the self advocacy topics we have covered and we are making this a priority.
The change in thinking or attitude is one that required me to go into the school and share with those working with Elizabeth that even though she does have special needs and some being academic, she still has the feelings and emotions of someone transitioning into being an adult. During our talks, Elizabeth has shared many things with me and I, with her permission, shared them with the staff. I did this to show them how deep her thinking is and how we NEED to know this about her because if we focus on IEP goals only, we lose the person. If we focus on goals only, we stand a good chance not noticing how this child is changing and her new needs and goals. It really is all about the attitude taken when working with and dealing with a person so deeply affected by dyspraxia and SPD.
Trust me, Elizabeth has the ability to achieve, she has the want to achieve and she has the personality to make everyone like spending time with her. But her dyspraxia makes it hard to do these things without some support, SOME support, not doing it for her, not taking away the chance to learn the skill, and not making her feel like she is a young child. And trust me here as well, I am guilty as charged in the above crimes…I, too, am growing with Elizabeth. Our family, is growing with Elizabeth. The fact that we are growing and changing together means we can keep seeing these wonderful gains. But everyone needs to be on the same “attitude page” and that is where the focus of our last meeting took us.
Good things come in some ugly wrappers sometimes…and the good of our shut down in September were these gifts I just discussed.
Seeing Elizabeth each morning, I remind myself of this next wonderful layer of Elizabeth we are now seeing and fostering. I too know ” It Is All About the Attitude”
This journey with our special children winds and winds and, as we all know, there are some very tough spots to climb, when you can’t see where to put your feet next but sometimes when you come to a place in the road that has quite the view, you simply glad you can take a moment to enjoy and for a bit to be glad you arrived.
I wish you all a peaceful week.