I apologize to my readers for being so disengaged from my writing. I had to. I’ve been so exhausted the last few years. As any parent of a child with a neurological disability knows, our kids will either make, or break us. I am happy to report that I am alive and well *chuckle*. So far. My daughter Michaela is now twenty-one. She successfully graduated from high school and even volunteered to do a thirteenth year (totally optional) to pick up important courses to help her when she goes to University/College. It’s been a long time since I wrote, so let me review my daughter’s labels: she has Asperger’s Syndrome, ADHD, a mixed receptive-expressive language disorder, an anxiety disorder and “other developmental disabilities.”
She left school with a reading level of grade seven. Her math level was at a grade six level. She never did learn any science or much of any other academic. She excelled in art, graphic arts, and physical education. At home, she excelled in Equestrian riding (for eleven years I might add). She also participated in an inclusive art exhibition here in Vancouver too. After high school she had to wait approximately a year to enroll in a special program at a University near us, aimed at teaching anyone with a cognitive/physical disability who wished or is able to learn, life skills how to find & keep jobs and complete four different work experience programs. She excelled and blossomed in this program. Here she saw the professor treat all students like human beings. The professor took her time with each student to make sure they always had a say when it came to “what they want to be when they grow up.” And so on.
Last May, this university was fighting to keep this program alive. This program was in three different universities until they were closed down in two universities but kept alive in one. The professor upon her request, asked for a meeting to convince the universities administration to keep and open more special needs programs. She was allowed to speak to the board of the University at one of their monthly meetings. She asked my daughter to speak along with her. Michaela has always melted down whenever she had to speak in front of a group. This time she shocked me: excited, she said YES. I had always taught her how important it is to teach others about disabilities, especially autism. TO BE PROACTIVE! She was listening! Where once she cowered in fear whenever any adult or child bullied her. If she had to speak out for herself (which she didn’t), it took me years to educate her how valuable she and other autistic individuals really are to others and the world. That she is NOT stupid, she just views and perceives her world differently! Michaela understands now, how really important education is- not just for her, but for everyone else around her.
So the professor had only ten minutes to present. Caela had five. I was asked to come along in case Michaela experienced any difficulties or severe anxieties. What I witnessed……made me want to stand up in front of that crowd and say, “Do you see? Do you see?? What the right education can do positively for a person who has challenges!!??” Michaela stood up and said her piece in front of the mayor of the city, the Member of Parliament of the city, the President of the University along with his two vice-presidents and thirty other important people. Michaela’s last statement was this:
“You must. You must……protect and develop this program for people with intellectual and physical disabilities!! ESPECIALLY for Autistics. You know why? YOU’RE GOING TO HAVE TO DEAL WITH US EVENTUALLY, BECAUSE WE’RE NOT GOING AWAY!”
Michaela nailed it. Everyone was shocked at her advocacy. They were suprised that she wanted to continue learning- upgrade some of her academics and eventually enroll in the Culinary Arts Program to become a Chef/Cook. She had impressed the MP of the city so much so, that he came right up to her and shook her hand, telling her how impressed he was with her speech. She received many congratulations that afternoon. Michaela’s last work experience was at the University itself in the Culinary Arts Program. This is not the norm in the program- all students are mostly “sent out” of the University to complete their four-week work experience.
Michaela shocked everyone within the Culinary Arts Program. The chef/teacher was highly impressed with her knowledge & confidence of the kitchen. When my daughter asked him as to how she was doing, he was abrupt: he told her he wants her in his program. He told her that he is impressed of her guiding others in the class whenever any of them needed any help. In the last week of her work experience training in the kitchen, Chef had asked my daughter to make something for him- anything. Caela took the request as a challenge and came home on a mission. She wanted to make something they’ve never had. Finnish food. So she came home went through my Finnish cookbook and decided to make bread. Not just any bread, but a sweet, coffee bread. We call it “Pulla.” So she went to school the next day and made four loaves. One for the students in the class, one for their little café to sell, one for the chef and one for home. Michaela tells me that the class had eaten the whole loaf within minutes. All the bread in the café was sold and in essence, her culinary baking project was a hit. Chef then gave Michaela a book on Kitchen Math to study over the summer to prepare for when she gets in the program. A big hint for Caela that she should enroll in the program and not give up. She was elated to be given a hundred dollar textbook for free and a promise that he would work hard to get her in the program. Her disability be damned. We were thrilled!!
She was in the kitchen doing her work experience at almost the same time she was invited to make her speech to the universities administration. After she gave her kick-ass speech, she coyly told her audience that she along with the other students in the kitchen prepared the Asian Indian lunch that day for them. She then said “please enjoy the naan bread that I cooked!” This was a huge surprise to them and to the esteemed South Asian exchange student who after her speech, told her he was more than looking forward to it!! Everyone just looked at each other surprised. I couldn’t help but shake my head in disappointment for their lack of knowledge regarding Autistic people.
It was the proudest day of my life.
My autistic daughter is fighting for her successes in life despite the odds and challenges. Temple Grandin has always been an inspiration for her and Caela wants to take up Temples fight to educate others and to be pro-active. We are just beginning. Just two days ago, Michaela and I visited the university to enquire about funding options and to get that in motion. The woman at the desk told Michaela she had “good news”. Michaela was formally accepted into the Culinary Arts Program and is now on the class list!!! We were told that Michaela would most likely go on the list next year! My daughter was extremely pleased but I was ecstatic! I kinda made a bit of a scene actually. At least the receptionist thought I was funny!
Parents. If you have a HFA, PDD/NOS, or Asperger’s child, do not THINK FOR A MOMENT that your child cannot make it. You know your child the very best- their strengths, weaknesses, and challenges. You most likely know their hopes, fears and dreams. This may not manifest fully until they are 15+. But work on this, shape it. Their passions and strengths may be the only thing that make them successful in life in order to avoid a life of poverty, struggle or homelessness. I knew my daughter had a talent in horses at eight years of age. I sat back, worked on her self-esteem and confidence and just observed. She was still young yet. She struggled throughout elementary/high school, trying to make sense of it all with teachers who “were gonna make them NOT autistic” or just simply just sat around with them in class doing virtually nothing. Like what the hell, “they’ll never amount to anything in life anyways!” (My daughter overheard this statement in class once).
Tell your students, your children not to give up. Ever. Teach them how to fight appropriately. They are not stupid. They are simply striving to make sense of the world, where people are constantly re-defining the meaning of what’s NORMAL. There is no normal, only uniqueness. Tell them to advocate to their teachers and to others respectfully when they are having social or difficulties. Let them know they have a voice- and to NOT be ashamed when they have to listen to their inner voice, to ask for advice, to use judgement and logic when making decisions. These children come to us to teach us lessons. To help others. To help us along our journey in life and to embrace compassion and empathy for others who struggle as well.
They DO NOT come to us to make us feel that there is something wrong with us. We are not responsible for bringing into the world a defective child with Autism!!! The responsible thing to do, is to embrace and to look forward to the hidden lessons these children came to teach us. What have you learned whilst raising a child with special needs? Are you a better or worse parent since your child came into the world? I tell my daughter all the time: “your soul picked me. Not the other way around.” I have not been cursed bringing a child like this into the world. It is tough. Stressful. Isolating, but it has also been incredibly rewarding.
But I’ve learned to be tough. Mentally and physically. I have more compassion and empathy for others. I have developed more patience and understanding. I have learned to use my voice. I have learned to develop tolerance towards self-centred, arrogant people. I have learned to be more authentic and more.
And it shows. I have given up a very good career as a dental assistant to become a trained ECE Educator and Special Ed. Assistant in autism. I have learned to turn the other check in this incredibly thankless & incredible stressful career because I fall in love with the soul of every child/student that I work with. I love it when their eyes light up when they have just finally figured out how to respond to a social difficulty or trusts me when sometimes I say, “just memorize it” the answer will come later, or when a problem is solved for them after years of trying to figure it out, or when they find their own confidence because they know that I believe in them and have their back. And so much more. Almost every day I go home with a smile on my face due to some minor or major success seen, or unseen by them but observed by me, telling me I did my job well. Administration be damned. I don’t want to talk about them, the very thought of them upsets me.
My daughter and I have succeeded through many obstacles and barriers. And it’s only the beginning.
It is time that Autistic people find their place in the world. Apples and bananas. We’re all in the end, in the same basket!