Did you know that my story, your story, your child's story is big business? Wanna know how I know? Because I am profiting off of it every single day. I am a blogger edging so close to 'writer' that it hurts and I am using my story, our story, her story, to showcase what I've got. I've got 'chops', I've been told. I've got 'voice' and 'heart', but if I were writing fiction would I be so popular? If I were writing children's literature would I be such a prize? It hurts my brain, you know. Every time I get paid for writing about our family and Kate, I wonder, if I am just another tool (so to speak) in this big business called autism. If you hashtag autism you'll draw in a crowd that is hungry for answers and for solidarity. A crowd that is desperate for help and understanding. I am one of you and I am using us for profit. I can pretend that spreading awareness is the goal but paying off the line of credit is the goal. Paying for Kate to have private therapy is the goal. Saving for her future is the goal.
Your story and my story and their stories are big business. People will take your money and in exchange offer you a small bit of comfort or hope. People will take your money and offer a false promise and a shallow hug. People, like me, will take your money because we know you will click and read on anything related to autism because you are so afraid and so alone.
Be careful, then. Be careful when you listen to the promises people will make to you. Be careful, when so called professionals have news of cures and answers. Be careful, when 'writers' tell their story. Be careful.
Sometimes, I am so overwhelmed by the massive amounts of shit information on the internet, that I can only cope by pouring a Jack and Diet and hoping, or denying, that I rarely contribute to the brain numbing, unbelievably dangerous misinformation about autism, and children with different needs in general, that permeates hyperfuckingspace.
Do you want to know the worst part? It sure as hell isn't the idea that the parents of children with autism are reading this bullshit. It isn't even the fact that professionals in the field are reading this drivel. The real problem lies in the frightening fact that some dangerously small-minded, open-mouthed individuals might read, and worse, share information that could potential harm our children.
I certainly don't profess to know all of the answers. In fact, I recently learned that I don't have any of the answers but I know enough to know that little tidbit and a few other things, too. For example:
Dairy Products DO NOT cause Autism
Ketchup Makes Everything Taste Better... Except Ketchup.
The Psychological assessment happened; the test that tells me that my girl is not okay. The test that tells me she cannot compete with her peers. The test that tells me that cognitively she is well behind where she 'should' be. I thought I would cry. I thought I would write about how unfair the system of comparing our Kate to one hundred 'so-called' average children would be.
The truth is, I don't care. It didn't hurt me in the least.
Kate walked into that assessment the same kick ass little girl ninja she was when she walked out. In her unique mind she spent hours playing with a 'friend'. She doesn't know the words 'test' or 'normal' or any such shit. Alex and I giggled when the doctor asked her questions that were well beyond her reach. Not in a cruel way, you see, but in a, 'you don't know our Kate' way. Alex and I talked about how phenomenal she is in so many areas. In fact, she'll make you smile immediately upon seeing her but she won't be able to tell you what she did today. She'll make you feel like a rock star each time you walk into a room but she won't be able to tell you the colour of a banana. She'll make you feel adored but she isn't quite sure how to hold a pencil.
What's more important? We think we know. We think Kate knows. We hope you know.
I have a bad case of nostalgia, lately. The movies I choose and the books I read have all taken me back to a simpler time. No surprise, really, that when things get a little hairy, I yearn for the days when my problems involved a too early bedtime or a science project gone wrong.
Thank goodness for Netflix because there are days when I need to transport back to those days and I like to take my kids with me. Maybe Ghostbusters is a bit much for the little munchkins but the two pictured below will do just fine. I'll just save the good stuff for once the kids are in bed.
What films would make your list? What comes to mind when you think of film and TV from a less complicated time in your life?
I guess I didn't realize how much anxiety I had wrapped up in the planning of Kate's fourth birthday party. If I reflect on the planning and the weeks leading up to it, I was a bit irrational. Anxiety can be such a bitch, can't it?
Example of things I did due to unwarranted anxiety:
I ordered custom invites because I wanted to impress the parents of the kids at the daycare because I was so afraid they wouldn't come.
I gave the invites to a daycare worker to hand out because I didn't really want to know who got one so I wouldn't know who decided not to come. (I just asked to her to invite anyone who she thought might like to attend)
I paid more than I could afford to rent out an indoor playground to impress the kids so they would like Kate. Which is stupid because she is so fucking likeable!
I snapped at anyone who questioned my party planning (sorry Alex).
The party was a huge success regardless of my anxious planning.
Live and learn.
There are so many better reasons to cry than this, but here I am. Typing through tears because the Mother's Day crafts that came home with Kate were once again, coloured inside the lines, cut out perfectly and with perfect lettering detailing how much she loves me.
In other words, she didn't make them.
Her lovely and kind support workers make sure she is never left out and always work hand over hand with Kate to create those things that every mother wants to place inside a memory box of treasures.
Want to know a shameful secret? I don't put them in the memory box. I let Kate hand them to me bursting with pride and I go on and on like she's painted me a self portrait and then they sit on the counter until I throw them in the garbage with a mixture of sadness and frustration.
Is that awful? I guess I don't want to save a reminder of Kate's deficits. I don't feel sentimental about the colouring and printing skills of Kate's support workers. The perfectly formed crafts and cards are stealing, from me, the right to smile at strangely formed letters of misspelled words and the disorganized colouring of a four year old.
Does this sound like a criticism? It is not meant to be. I know there is no other option when it comes time to sit for arts and crafts or any fine motor activity for that matter. I am just feeling selfish this Mother's Day and I thought I might share that with you.
At least she can talk.
Is she verbal?
I thought autistic kids couldn't speak?
I don't mind the questions, I really don't. I just want to clarify a few things.
Verbal doesn't mean what you think it means.
Children with autism, Kate included, have deficits in communication regardless of their verbal abilities.
Diagnostically, there must be a communication deficit to be considered autistic.
Language and communication are two different things.
Highly verbal individuals with autism are still unreliable in terms of communication.
Non-verbal individuals with autism are unreliable in terms of communication.
Answering questions, having a conversation and making requests can be extremely difficult for individuals with autism.
Nuances of conversation, idioms, metaphors and body language can be confusing and frustrating.
Kate does hours of therapy every single day to work on communication and socialization (which is a form of communication) skills.
Kate will undergo a cognitive assessment this month. She will be given the non-verbal assessment because, even though she can talk and does talk, she does not efficiently communicate.
Does that make sense?
Happy Mail to:
27 Wellington Row
Saint John, NB
Grace and Kate's mom. (Shanell)