FROM OUR MAILBAG!

I decided to take my children to a play in downtown Toronto.  It was a popular "Jillian Jigs" story that my children enjoy.  The theatre is for children up to ten years old, with short plays by aspiring young actors.  The children sit on the floor in front while parents sit at the back in chairs. 

My son, (who is three and has CHARGE syndrome), his brother (age six), and I set out on a lovely Sunday to see the show.  My sister and her son met us at the theatre.  Seating is on a first-come basis.  When we got to the front of the line, I told the usher my son was deafblind, and I would need to sit on the floor with him.  I was informed that adults could not sit on the floor.  I would have to leave him with my six year old or bring him to the back where the parents had chairs.  I decided to sit at the back in the chairs, but the only seats left were in the last row.

The show began and my son, who has a field visual loss and therefore residual vision, could not see from where we were situated, and could not hear.  He started to laugh, being caught up in the experience.  We got several dirty looks from the man and his wife two rows ahead.  The usher was standing beside me and smiled and said, "I'm sorry, I should have someone who was closer to switch seats with you." 

My son continued to try to see what was going on by standing up, and making a little noise.  The man and woman up ahead snickered and seemed to huff and puff unil they said, "I think you should take him out".  I smiled and said, "He's O.K., I think he just wants a better look".

The couple then complained to the usher, who responded to them that "it was a children's play and he's having fun".  Once again the couple asked that my son be removed.  At this point, I was in shock and decided to leave and miss most of the show. 

After the show, we all witnessed the same couple outside the theatre.  They said, "people should not bring kids like that to the theatre".  As you can imagine, steam came from my ears.  I wanted to let him know that my child is deafblind, and that this children's production was for the enjoyment of all. 

I wish I could go back and educate this couple.  I cannot take away the prejudice and ignorance of others towards people with disabilities, but can provide them with information.  I wanted to thank you for providing on your website the "CHARGE Syndrome information pamphlet", which can be easily downloaded and passed around to others. 

Perhaps some families grow up in a perfect world, where children behave and sit still when they are told.  Others cannot know the daily concerns of a child who has disabilites, who cannot sit still, listen to instructions, or easily get information that is taken so much for granted by others. 

Our children are wonderful "kids" who love movies, shows, singers and entertainment.  They may not get all that is happening around them, but we are there to help them connect these meaningful experiences.  They love to laugh and have fun just like any other child.

I felt I had to write in for all the children who are like my son. With a CHARGE Syndrome pamphlet in hand, at least I could have helped the couple understand a bit, and perhaps they could have developed better tolerance for people with disabilites!