Long before Kate was diagnosed I was invested in autism and other exceptionalities because I am a teacher. I was not an advocate, or even well enough informed to do my job property, but I was interested and compassionate and ready to learn. And then, this prick said his piece and I cringed and moved on because it really didn't threaten my world.
Oh, how wrong I was.
If you think he is alone in his ignorance, you'd be wrong. I didn't post this because I want Michael Savage's dangerous message to spread anymore than it already has. I posted this as a warning. Just because people do not say it as loudly and confidently as this loser, does not mean they do not perpetuate this idea every time they question your parenting or your child's diagnosis or your choices.
In some ways, Savage has done us a favour, and shown his true colours. He is like the racist that is vocal about his archaic beliefs. We can spot the crazy easily and make efforts to avoid it and protect our children from it. The more dangerous person, is the one that silently agrees with Savage's rant; the one, that knows his minority opinion would not be welcome, so he stays mostly silent and instead preserves Savage's mantra quietly.
Below, I have left Savage and his supporters directions to where I think they might be most welcome.
Last night Alex and I were invited to attend the Matt Andersen and Symphony NB concert at the Imperial Theatre. A brilliant lawyer and GoTeamKate blog reader contacted us and asked if we would like to be guests at this concert. Her firm was sponsoring the event and we would be enjoying the concert and a cocktail party with Matt Andersen following the show. We, of course, said yes. We booked Grandma to babysit and headed out for a night we both really needed.
This post has little to do with autism except to say that after a busy week of visits to the developmental pediatrician, occupational therapist and speech pathologist we were tired and needed a night out.
We had seen Matt Andersen before and we had, of course, seen the symphony a number of times but the combination of the talent made for an astounding show. Multiple times, during the evening the crowd would erupt into applause over a feat of guitar genius demonstrated by Andersen. Having no guitar knowledge to speak of, I often thought this indicated the end of the song. What I found was that there would be so much celebration prior to, during and at the end of each song I would be hard pressed to follow the program.
The energy was intense and often time the 'riffing' (is that what you call it?) seemed likely to blow the beautifully ornate roof off of the Imperial Theatre. Andersen would attack his guitar, breaking strings and causing the audience to vibrate with approval.
I turned to my husband as I watched Andersen blow the audience away and I whispered:
"I feel like I could do that."
Of course, I kid. Every moment of this concert was a treat for two tired (autism) parents and we were especially thrilled to meet Andersen following the show.
During the concert, the unbelievably talented artist Peggy Smith sat on stage and painted Matt Andersen and Symphony NB. She no doubt captured the energy of the evening and I was thrilled to watch her work. Whose genius idea was this, I wonder? So much talent on the stage and Alex and I privileged enough to take it all in. I have adored Peggy Smith ever since I spent several years working at the NB Museum. I would often visit the NB art gallery and stare at her work, imagining where I might hang it in my home. Lofty goal, I know. Some of Smith's artwork sat in a silent auction last evening and the reserve bids were a just a tad out of our range, but owning one of her paintings has always been on my 'list'.
Do you know how hard it was to NOT instagram filter the hell out of these pictures? I love those filters and the way they make everything look 'better'. In the interest of the integrity of this post I held off and decided to show you the real deal.
First, the scene: An apple orchard in Kingston. Piles of children tripping over the apples discarded on the ground by piles of other children. Grumpy dads and iPhone wielding moms taking pictures to prove their children do seasonally appropriate activities in seasonally appropriate attire. Two minor autism induced tantrums and a friendly puppy to make it better, round out our morning at the orchard.
I have arranged the pictures below to show you the kinds of things that I usually post on Facebook, Twitter, Instagram, Vine etc. Following those, I posted picture depicting the reality of our day. I am finding I enjoy reality much more, these days.
Below, the pictures that I pulled from the hundred I took today. These are the pictures that make our day look like an effortless morning outing. See the happy, well-behaved children. Isn't is obvious that this family went home and made apple crisp to eat after their honey ham supper tonight? This family has their shit together.
This family took the visit to the orchard as a learning opportunity and taught their two young daughters about the different types of apples and the kinds of great foods they could make with their haul today. They even threw some math in when they asked the girls to count the apples in their buckets.
The older girl kindly reached for the apples that were out of reach for her little sister. They stuck together and giggled softly when an apple fell from the tree and almost hit daddy in the head. Oh, what a time!
(Did that make you feel as nauseous reading it, as I felt typing it?)
And now, the reality. (Minus pictures of the tantrums, which would have been ideal, but dammit I can never get to my camera and stop her from destroying public property at the same time.)
This family dropped all of the apples out of their buckets twice. They are fairly certain many of the apples they brought home had been sitting on the ground for weeks.
Their littlest one beelined for a busy road and her mother turned her ankle while chasing her. Their mother swore loudly and caught the attention of a disapproving LuLuLemon clad supermom. (Did you know, LuLu made apple picking gear?)
The oldest refused to wear the outfit that was chosen for her and perfectly co-ordinated with her sister's. She chose to wear her school clothes from yesterday, instead. The mom spent so much time behind her IPhone trying to get a 'great shot' that she did not actually pick even one apple.
The drive to the orchard was longer and more painful than the eleven minutes they spent there but when they look back at their 'pictures' they will remember it so fondly they will be willing to do it again, next year.
They went home and gratefully accepted an invitation to eat elsewhere because they were too exhausted to cook.
I know who I'd rather hang out with. So, from now on, I will make every effort to show you the truth, as I see it.
It is the mark of an educated mind to be able to entertain a thought without accepting it.
I appreciate that your employer offered a professional learning opportunity that allowed you to spend some time learning about autism spectrum disorders. I am grateful that you took your learning seriously and you are interesting in learning more.
I only wish to caution you this: The study of autism spectrum disorders is massive and ongoing. Current and progressive pedagogy is easily permeated by unfounded generalizations that sweep though the autism learning community and can cause serious repercussions for the families living with autism. Widely accepted myths about autism are spread through networks of professionals and paraprofessionals working in the field. This is dangerous and I would encourage you to be sure that your information/program is legitimate, peer and parent-reviewed and has the best interest of the individual in its design.
This is not an easy task, I know. If you have chosen to work with individuals on the autism spectrum you have the responsibility to understand autism in its many forms and you must understand the basics, at least, of genuine and justifiable treatment options.
I do not posit that living with a child on the spectrum or living with autism makes someone an expert on autism. I do maintain, however, that the parent is the expert on their child and their child's version of autism.
Learning about autism is a ceaseless endeavor. You will not conquer this topic. I, for one, would love to see you try. I try.
And while I try, I read and I read and I read the most relevant literature I can find. I spend hours speaking with other members of the autism community. I listen to the opinions of doctors and therapists and the people that love these children and I hold all of this information in my brain until it becomes too much and it spills out onto this blog, for better or for worse.
This morning Grace said to me: "Mom, I will tell you this and you will tell no one." (She is a bit dramatic and she speaks likes this often.)
I obviously braced for something big. Sort of.
She said this:
"Mom, there is a bully at school and NO ONE plays with her. We all run because she will attack you if she gets near you."
Now, maybe you are wondering if I called that school right up and demanded that the bully be kept away from my precious little snowflake.
Not a chance.
My heart goes out to that girl. Grace is fine. She has a team of friends around her. They might even be bonding over their fear of this girl. This makes me ill.
I felt gutted for two reasons.
1. I imagined a school yard full of children running and hiding from a little girl.
2. I imagined Kate in her place.
Kate is rough and tumble. She hugs like a linebacker and she has no mercy when she wants something that you have. She doesn't understand social conventions and she might always struggle with these abstract concepts. She might be that girl that everyone runs away from.
I believe there is a place for anti-bullying education. I believe some children are bullied mercilessly and it changes them. It shapes them into anxious, self-doubting adults. It leaves scars that cannot be healed. I shudder at the thought of my girls being bullied. I know Kate may be a prime target herself.
This girl though, the one Grace is talking about, is different. I've met her. I've watcher her interact with other children. I suspect there are developmental issues clouding her judgment and her understanding of school yard etiquette. I've schooled myself in such things and while I have no right to label this child, I feel strongly that there is something more to her behavior. I believe that the label could bring much needed answers and support for her and her family. Ultimately, It is not for me to say.
Grace and I had a long talk this morning. She left confused. All the propaganda surrounding bullying demands that Grace despise this activity. She must run and tell her teacher. She must stand strong with her friends against the bully.
I don't expect Grace to understand the intricacies of this situation right now but I hope one day she will.
After all, she will share that school yard with her sister in two short years.
Help, four months until we leave for Disney. I know.... not exactly a problem. I am asking these questions WAY in advance because I am a planner. I need you advice. I need your tips and tricks. We've been to Disney with the girls before...before the diagnosis...before the mountains of help and support...before we knew for sure. Kate hadn't even turned two.
Like a large number of parents of soon to be diagnosed children, we thought Kate was hearing impaired. I guess she technically was hearing impaired because her ears were so full of fluid that she was hearing as if underwater. She had the surgery to place tubes in her ears and then we could no longer blame her hearing for her funny behavior. I can practically hear some of you nodding your heads through the computer. I know you went through this, too. I know when you lost the ability to blame their hearing you entered a whole new faze of this trek. In fact, our trip to Disney two years ago solidified all my fears about Kate. You can read more about that in our diagnosis story.
Autism or not, Kate was under two years old when we first made our way to Disney and we knew it would not be easy. On that trip we had the luxury of staying at the Polynesian Resort with the monorail at our doorstop and we had 6 adults and three little girls to share between us. It was a recipe for success and most things went off without a hitch. Alex, is afraid to fly. (I don't think he'll mind me saying that.) Honestly, he should be medicated but instead we hand him Kate and he is so busy taking care of her he forgets his own paralyzing fear. It's kind of a win/win. For me, anyway.
This trip will be different for a few reasons. We are going alone; just the four of us. We are staying off resort. We are renting a car. It will be a little less convenient but we will make it work. Like last time, we will sit Alex and Kate together on the plane and Grace and I will relax and watch movies ;). I want both girls to have a blast and I know they will but I am particularly interested in making sure Grace does not feel held back.
We will ask for the Guest Assistance Pass at the concierge of each park we visit. (I am not entirely sure what this will entail.)
What else should I know? What can I do to make this as seamless as possible? Are there accommodations that can be made when we fly? Will I be liable if I become violent if someone says something rude to Kate on the plane or at the parks? You know...the usual questions?
Sometimes it makes me cringe when people look at Alex and I like we are doing something special. I don't mean the kind words that you leave on this blog because they are appreciated beyond imagination. I mean the times when someone looks shocked that we are functioning and functioning well. Let me explain. Kate is not hard to love. It is the easiest thing in the world. So, often it bothers me when people are surprised at how hard we work for her and our family or how we are generally not that stressed out. (I am definitely more stressed about the Red Sox post season looming, considering their collapse last year, oh and our new cat "Bill Bailey" is a righteous dink, so that is a bit stressful, too)
Kate is a pleasure. She is not a burden. She is not a problem. She is as special to us as any child is to a parent. There are days when parenting is hard. I know that is true for all of us (except a handful of Pinterest moms who DO NOT EXIST). But, please understand that we have never and will never look at Kate as anything more than the most perfect little Kate in the world. And if we are being honest let's look at this situation with priorities in place.
I have said it before and I will say it again:
I said AUTISM not CANCER or DEBILITATING or FATAL.
I said she flaps, jumps and spins when she is happy. I did not say she cannot walk.
I said she does not like to look into people's eyes. I did not say she could not see.
I said she is sensitive to sound. I did not say she could not hear.
I said she struggles to talk. I did not say she struggles to breathe.
I said she is not sure how to play. I did not say she is too sick to try.
I said she attends multiple therapies every week. I did not say we could not afford her care.
I said she might live with us forever. I did not say she had nowhere to go.
Readers of this blog know, that although this blog bears her name, Kate is not the only focus of our journey. Just as important is big sister Grace, who is the captain of Team Kate. Grace, at five years old, already understands that Kate needs a little more help day to day and she relishes her role as captain. She prefers to stay out of the limelight, so to speak, and will 'grace' this blog only when I consult her. The same will be true for Kate when she can make that decision. I asked Grace if I could write about her first day of school and she was eager to tell her story, so here it is.
Before I begin Grace's story I will back track a little and remind you that Grace has a lot of anxiety, in general. Starting school is bringing that out in her and the past few weeks have been challenging to say the least.
Now, if you will, imagine the quintessential Kindergarten teacher, with her gentle voice, and patient demeanor; the kind of teacher that students and parents adore; like Miss Honey from Roald Dahl's Matilda. Yes, her. Well, Grace has TWO of her. She has two perfect Kindergarten teachers that cannot wait to teach her. She is a lucky girl and we are thrilled for her.
The evening before Grace's first day of school we sent Kate to spend the night at her grandparent's house. This was a huge help in a couple of ways. Her grandmother could take her to her speech and occupational therapy appointments for us and we could focus all of our energy on Grace. We asked Grace where she would like to go for a special supper. She chose a Japanese restaurant (it could just as easily been McDonalds) and off we went to meet her aunt, uncle and cousin. She was especially thrilled with her dessert.
After dinner we went home for a quiet night and tried to keep things as low key as possible. We read, "The Night Before Kindergarten" and poems from Jack Prelutsky's, "A Pizza the Size of the Sun" and sent her off to bed with constant reminders that she will be fine and school will be a lot of fun.
She went to bed easily. Hmmmm?
She crawled into bed with us sometime after 4am. She never does that. She was nervous or excited or more likely both. When morning finally came she wanted her dress on immediately. She ate pancakes and starting worrying about missing the bus. She wanted to go the bus stop as soon as possible. It was thirty minutes before her bus was due but she wanted to go. I stalled her for a little longer and then eventually gave in and took her over. She didn't say much as she waited with her friends for the bus. Her cousin came down to ride the bus with her. I am sure this is the reason she got on the bus without tears. He is a big Grade 5 boy and he made her feel safe. Once she was off on the bus, we, along with the other parents, raced the bus to school so we could meet her getting off of the bus.
When she got off the bus she immediately told me that she would not be going back on the bus unless I was driving it. Pretty unlikely since my husband won't let me drive his work truck because he doesn't 'trust me with it', yet. We walked to her classroom and she clung to me. She didn't speak but she didn't cry either. She held my hand and looked down. Her teachers gently guided her to her chair and she allowed me to walk away. I'm not going to lie, before I left I whispered in her ear: "Grace, if you do this I will buy you the biggest stuffed animal I can find today."
What? It worked.
She did it. She went to school all day long and I don't thinks she shed a single tear.
She told me she loves her teachers, she loves her classroom AND she gets to play on the playground every single day. I could not be more relieved.
She fell asleep within minutes of arriving home and I let her. She is one tired little girl. The day could not have gone better. I worried a lot for nothing. Those that know Grace will appreciate how brave she was today. We are so proud of her.
Grace and Kate's mom. (Shanell)