I could relay a number of instances when Kate has been teased or bullied by other children. I won't, though. It would be too painful for you to read. You won't like it anymore than I did. The children are not to blame, of course. They instinctively question her differences. They can't help but laugh when she does something strange. The most disturbing part, for me, is when I see Kate laugh with them. Kate doesn't understand that the children are laughing at her odd repetitive movements or her 'baby-talk' or her diaper or her chewy toys. She often thinks she is in on the joke and she laughs longest and loudest. It breaks my heart. It makes the children laugh harder and I get glimpses of her future at school.
I guess you could say that Kate is moderately autistic, mid-functioning, swimming in the middle of the pool or whatever other silly metaphors are used to make her developmental delays clearer for her team. She is not severe enough to garner the sympathy of her peers and not high-functioning enough to 'pass', either. She sits somewhere in the middle and she is a prime target for bullying.
This is terrifying for us.
Alex talks about how we can work with Grace and the core group of children that Kate will go to school with and train them, so to speak, to protect Kate. I cringe at the thought of Grace feeling all of the pressure to stand up for Kate in the school yard. But, together, I think Kate could have a righteous little team behind her. I think about this little team, that we are slowly preparing for her, when I feel afraid for her to walk through the doors of that school.
When I titled this blog GoTeamKate, I was originally referencing the many adults that would work together to help Kate negotiate her world. I didn't expect that a team of little children might be the most integral part of all.
I will spare you another post about how hard holidays are for children with autism. If you're reading this, you know. Or you care to know. Instead I will tell you about a way we are planning to make things run a little smoother this year. GoTeamKate is going to sponsor a Sensory-Santa event.
Firstly, you don't have to have autism to be afraid to sit on Santa's lap. Neither of my children take part in this tradition and I'm betting many of your children struggle, too. It is a bit unnatural, isn't it? Waiting in a long line with other anxious children and tired parents to sit on Santa's lap. For some, the line waiting is hard (nearly impossible for Kate), for some the sitting on a stranger's knee is hard (not gonna happen for Grace) and for some, the mall at Christmas time is simply too overwhelming to begin with.
GoTeamKate is going to offer an alternative this year. We have reached out to Santa Claus, himself, and he is willing to come to the RKYC on November 30th from 2-4pm and spend some quality sensory-friendly time with children who, otherwise, would not get a chance to meet with him. If your child(ren) has sensory issues as a result of autism or any number of other reasons, then you are a candidate to attend our event.
The event will, of course, be FREE of charge (**with the help of your donations). Parents may or may not order photos from the volunteer photographer at this event. (*See details below).
Families (yes, the siblings of your sensory-sensitive kids are welcome, too!) can come and visit with Santa for a few hours. This event will be as sensory sensitive as possible. To book a spot or ask questions please email me here email@example.com. Obviously, there will be limited space available so please book early and make sure you are free to attend at that time.
Santa will be there to allow children as much or as little interaction as they feel comfortable with. Some children may just enjoy watching Santa from a distance and that is fine with us.
There will be activity stations set up to keep children entertained and some sweet treats to keep them happy.
Please stay tuned for more details.
*GoTeamKate is looking for an amateur photographer to lend their skills at this event. Duties would include volunteering your time and equipment to take pictures of the children interacting (or not) with Santa. Parents could then request pictures directly from you (for a price determined by you and GoTeamKate) which would be delivered at a later date.
*Update: We have a photographer! We are very excited that Sarah Steinhauer has offered her services. Check out her work here: www.wix.com/sastein41/runestonemedia.
**If you wish to donate to this event please use the donate button to the top right. (Unless you are reading this on your phone because then the donate button is below). Thanks!
Each day when I pick Kate up from daycare, I ask her, "What did you do today, Kate?" and she always smiles and gives me a string of babble. She has lots of words but she cannot answer a question, yet. She can't tell me how her day went. She is great at requesting things. "Mama, I want turtles, wet's do dis." or "Mama, I go outside, wet's do dis" and some of the sentences are so long and detailed that Alex and I can't believe it came out of her mouth, eg. "Mama, I pwease tell you I want hug now pwease, wet's do dis." Anything else she says is usually jibber jabber or unreliable. So, I rely heavily on those that work with her each day. They are great at patiently telling me the details of her day.
Yesterday, when I picked up Kate and asked her the same question, she said, "No hitting, Kate." I was pleased because in a way I think she was telling me how her day went. Of course, I don't want her hitting the kids in her class but at least she was trying to share something with me. I'll take what I can get.
If you work with children with communication difficulties,and that includes the vast majority of kids with autism, regardless of where they land on the spectrum, then please be cognizant of how removed their parents feel from their day. Remember, even children with large vocabularies can be unreliable with communication. Please share all of the good and some of the bad and even some of the mundane. It means a lot.
If you love someone with autism you must buy this book. In my opinion, to date, there is nothing more authentic, credible and enlightening than this story. "The Reason I Jump" is written by a thirteen year old Japanese boy. To be honest, I avoided this title for awhile. I was tired of reading inspiring stories of autism genius. This is not one more book to tell you that there is potential genius locked inside your child. This is real. This is beautiful. I've been craving this. The genuine narrative of a thirteen year old non-verbal boy answers so many of your questions and offers insight I haven't found anywhere else. I hope this becomes required reading for all those that work with our children. Buy it, share it, talk about it.
Thank you Naoki!
Grace and Kate's mom. (Shanell)