When Will The "Why?" Come?

We must presume competence, our children are more cognizant than we think.

I came across a post today, while searching #presumecompetence, that talked about a six year old boy asking his father why it was hard for him (the boy) to be good. I tried to link the post, but couldn't get it to work, so here is a snapshot.

I wonder when C will ask this very same question and have tried to formulate a response. It is my opinion that he should know his diagnosis and I want to be honest, and yet sensitive to what it will mean to him. I wish I knew what was taking place in that beautiful mind, but he does not have the words to effectively let me in. 

I feel like I am always a walking contradiction. I know that he understands so much more than he is able to communicate, but it leaves me, much like everyone else, wondering how much he understands. I long for a conversation that is more than a playback from a scene from Toy Story. I try to read into scripts, thinking maybe there is an underlying meaning to the words he repeats over and over. 

I can sometimes see in his eyes the disappointment in my not understanding the simplest of requests and sometimes feel that he has given up on me. Rather than continue to try to make me understand, it must be easier to just walk away. 

I can't deny the progress we have made. C has speech therapy 3 x's a week between school based services and outside therapy. The additional therapy has made all the difference in his ability to slow down and enunciate his syllables. And yet, I still long for a conversation. I want to hear how his day at school was, from his perspective. We rely on the interpretation of his day, from the eyes of his teachers and aides. We anticipate the multi-paragraph email giving us just a snapshot of his 7 hours away from home. Does he have friends, that are meaningful to him? Did he enjoy the lunch I packed? What was his favorite part of the day? 

One day, I know he will be able to answer these questions. I remember the frustration we both felt when he would stand in front of the refrigerator, grunting - with no words to tell us whether he wanted juice or milk. The progress feels slow, but it is progress none the less. We will continue to support him in his quest for more language, and know how lucky we are to have the communication we do. I can bide my time, and remind myself to be patient. He will tell us, in his words, how he feels. He will ask us, when he is ready, why he has so many supports, why he feels different. Until then I will pray for the strength to continue to presume competence, and will remind myself daily that he is in his own right, brilliant. 

Thank you Chuck E Cheese

Tales of a Sensory Friendly Event

We went to Chuck E Cheese on Sunday. Typically I avoid that place like the plague, because when you go there, you just may come home with the plague. Additionally, it is loud, crowded, kids run around with little supervision, and I end up with a headache, I get anxious, and quickly become the obnoxious helicopter parent.

Why, you may ask, did we go to Chuck E Cheese, if it is such a terrible experience? Because of this:

The Glen Burnie Chuck E Cheese hosted it's first ever Sensory Friendly Morning, and we were so thankful to be included.

Sensory Friendly Events are becoming more popular, as awareness for the need expands. With the lights dimmed, less children, earlier hours, our children were able to play their favorite games with no wait time, climb through the overhead tunnels without physically superior children pushing their way through, one on one time with the beloved Chuck E Cheese, and so much more. There was no judgement from other parents, there was a sense of community, though the event lasted only 2 hours.

Before C's diagnosis, I don't think I would have understood the need for these events, I don't know that I would have given it a second thought. Now, we live for these events - more for my sanity than anything else. While I don't think that C understands his diagnosis, or even has an inkling that he has additional needs, I am hyper sensitive to it. C has no physical signs of a disability, and now that he is lacking his two front teeth, it is clear that he is no longer the toddler that his body language and communication skills indicate. I loathe going to crowded, kid infused, loud public places. I anticipate the worst, mentally prepare myself for the multitude of situations that can occur. Of course, we can't live in a bubble, we have 2 other children who deserve to experience all the joys of Chuck E Cheese, Disney, Museums, the Zoo, and even the mall. And to top it off, those who don't know C, don't understand his behavior, don't understand why he won't answer them when they ask a question, or make a request think I am raising a rude child, when in reality, it is their lack of understanding that can escalate a situation.

Knowing we can enjoy a place like Chuck E Cheese without having to be hyper-alert, that C is among children, families, parents and employees who have a deeper understanding of his need, means the world to me. Furthermore, when these events are advertised and held, we continue to raise not only awareness, but acceptance, of our children with varying needs.

To those that allude to our children being entitled, you couldn't be more wrong. Just as a person who is blind should have access to brail, children who cannot handle the sensory overload that is common to venues like Chuck E Cheese, should have access in a way that is sensitive to their needs.





The attached pictures depict just some of C's moments of pure joy. We have no less than 15 pictures of C riding the Chuck E Cheese Car (picture on the left is of C admiring his picture printed from the ride). He played a racing game that required him to jump on a built in pogo stick in order to make his character move. He used the mallet to "Wack A Mole". C made eye contact with Chuck E Cheese, and introduced himself. He danced to "Head, Shoulders, Knees and Toes" with the other children. He tried his hand at Ski Ball (with assistance). There was no limit to what he was able to try, he was able to take his time, and he chose what he wanted to do, without the pressure of the next kid behind him waiting for a turn.

Again, we couldn't be more grateful for the opportunity, and will certainly participate in future events that this Chuck E Cheese location hosts.