Autism: C'hele's Story

August 23, 2016

Autism: Documentaton

One of the most frustrating things I have to deal with at work is being the only one who documents. Document what you may ask? Negative behaviours, odd behaviours, and new behaviours. We use an ABC chart to do this. A: What was the antecedent before the behaviour occurred? B: What was the behaviour that manifested as a result and C: The consequence for the behaviour that occurred. Outside of using the ABC chart, we are also required to utilize what’s known as an Incident Report when negative behaviour occurs that involve physical contact: slapping, hitting, punching, pinching, kicking, spitting and the like. So many of my colleagues choose to opt out of filling out incident reports. Many Educational Assistants or Specialized Assistants feel that they are doing their student(s) a disservice by documenting. Or getting them in unnecessary trouble. Many parents refuse to document their child’s behaviours because they fear their child will become “labelled” or they fear that the government will label them abusive in some way.

I cannot stress enough how this approach can hurt their students/children. Without documentation, the individual who displays challenges does not get the free services and funding they would so desperately benefit from. The earlier your child or student receives support, the more success that individual will have. I know this to be a fact. I knew at six months of age there was something wrong with my daughter. Despite my inquiries, my family and some of my friends thought “I was making my daughter a special needs case.” The stress they caused me was overwhelming. I knew, early intervention was everything. I made the necessary doctor appointments, spoke to her pre-school teachers and talked with those who worked with her (dance teacher, Sparks leaders, etc.). I documented every single odd, repetitive, negative and even violent behaviour my daughter manifested. Times were crazy and stressful then. The documentation I provided to her doctors were worth their weight in gold. They could see I was being very proactive and was putting my daughter’s wellbeing first before everything. Because of this, my documentation made their work a bit easier- they in turn, worked extremely hard to find solutions and answers for us.

Due to the documentation, the hospital soon figured out that my daughter was Asperger’s, ADHD, had a mixed expressive/receptive language disorder, an anxiety disorder and had other developmental disabilities with a delay of two years. People were horrified that I was elated that my daughter was given the labels. Why? Because now I know what I’m working with. Not being one to bury my head in the sand and pretend that my daughter was normal or typical, I went straight to work. I decided that it was important to follow my daughter’s development so I attained my ECE certification and later my S.E.A. Certification, my POPARD/Autism training, worked at POPARD for a while, and much, much more. I wanted to get on top of things so my daughter could cope better with life, with people and learn how to self-regulate herself. As a parent, I’m not saying you have to do the same. But I’m suggesting that you read. Read a lot! NO ONE knows your child better than the parents. With this in mind, you stand a very good chance of helping your child to be successful in school, home and later in life.

The most frustrating thing I come across, is meeting parents who pretend that nothing is wrong with their little Johnny. When clearly? Its farther from the truth. Parents need to understand that by “making” their child “normal,” they are creating incredible stress, anxiety, and pain for their child. Is this thinking selfish on behalf of the parent(s)? Perhaps. I will use my own experiences as an example of what success looks like. I literally have books filled with written notes that I have made over the last 19 years. I wrote down every single thing I found odd, wrote down all the self-inflicted behaviours my daughter did and more. Making a very long story short, all the documentation and labels helped me to better serve Michaela. I had access to all the services and professionals she needed. I realized that she’s Autistic. Not stupid. She just see’s and perceives her world differently. She just wants to be accepted and included in life. She came out of high school with a 13 year completion certification only. She later enrolled in a University program for individuals with cognitive/neurological/physical disabilities. There, they taught her life-skills and gave her work experience and more. She is now at a grade 8 math level, attained her Food Safe certification unmodified, has her WHIMIS certification unmodified, attained her First Aid certification unmodified and she starts her Culinary Arts University program tomorrow. UNMODIFIED. Because she has labels, she is eligible to apply for grants to pay for her education, books, and more. I or Michaela have not had to pay a dime.

How does one define success? Does the Autistic individual HAVE TO BE a doctor? A lawyer? A surgeon? Not in my opinion. As long as my daughter can tell the time, read, do basic math, know how to use a calculator, knows street smarts, and knows how to ask for help and more? When she finishes her training in the Culinary Arts Program and if she passes? She will be a certified professional cook. In the end, she will be INDEPENDENT. To me, that is SUCCESS. But I will not lie, it is hard work. You have to constantly be the one hollering the loudest in order to get people to actually hear you. It can be frustrating.

So my fellow colleagues and parents. DOCUMENT, DOCUMENT, DOCUMENT. Focus on the small goals at first and don’t give up on the big ones. Follow your child/students lead and give them time. Work on your childs/student’s self-esteem and confidence. Tell them that it won’t be easy but it will be worth it in the end. My daughter’s self-esteem and confidence has exploded in the last two years. She no longer let’s others demean her. She understands her own power and strengths and is working it. Just because she thinks and see’s life differently, it doesn’t mean that it’s wrong! Presently, my daughter has a new mantra: “WHO SAYS I WANT OR HAVE TO FIT IN????” When someone gives her attitude and says to her “what’s the matter with you, are you stupid?” She now hammers them back with a mini educational class about Autism and what Autistic people are like. I have literally witnessed her making people look and feel two inches high after she’s done with them. There is nothing more rewarding as a parent, teacher or E.A., to see the struggle and later success for a person with an intellectual or developmental disability. It’s to be admired really when you think all the opposition they have had to face only in the end, not to let it control or beat them down. Once they realize that they have rights in this world and that they should never abuse it, they can do wonders. I have personally seen Autistic people come up with the damndest solutions towards creative projects and challenges. Just look at what Temple Grandin has achieved. My daughter idolizes her.

But parents. Don’t look at documenting as a negative. In the end, you will see the success but you do have to be proactive. And patient. Always and never give up. Approach your child holistically- become a walking encyclopedia on their challenges and think of them, put yourself in their shoes. Focus on their talents. Be creative in their learning. Your child should be celebrating their uniqueness and successes later in life.

P.S. I realize that everyone’s situation is different.  Go with what you know!

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