A strong example of how this mum’s battle to constantly advocate and inform has transformed since creating her son’s one-page profile. Now she is able to sit back and listen as she has the confidence that the people supporting her son understand him well and see the child that she sees.
My son Malcolm is almost 10 years old and is a very smart, funny boy who is such a positive, contagiously happy fellow. We had known from his toddlerhood that he had some delays in his development and seemed to be oblivious to much of the activity around him. It was very clear that he was bright and much of what we saw could be fluffed off as being a third child and my mom had said that boys seem to speak later than girls, so we weren’t concerned.
When Malcolm was 6 he was assessed for Aspergers and Autism. His older brother was diagnosed with Aspergers when he was 6 and Malcolm seemed to be progressing socially and speech-wise, much slower than his peers. At that time he was not clearly on the Spectrum. By the time he was 7, the paediatrician labelled him with Attention Deficit Disorder (ADD) and put him on medication. The medication certainly helped but when he was 8, he started to show signs of emotional struggles that seemed greater than the ADD label. After he was assessed by a team at The Children’s Treatment Network in the spring, they had found his characteristics seemed consistent with an Autism diagnosis.
When Malcolm started his grade 4 year at the age of 9, there were so many new staff members to the school, including the principal, that it seemed a good idea for me to create a one-page profile for them to get to know my son and to know how to help him through any social/emotional struggles he may experience during school. The year prior, he had started to hit himself in the face when he was overwhelmed with frustration, I felt that the staff could understand more about what drove this behaviour, how to recognise the triggers and therefore how to support him to avoid it, as well as how to guide classmates in supporting him in a non-judgmental way.
As a part of my role with Community Living, I have been creating one-page profiles for various facets of people’s lives to help others get to know them. I created a profile for my son for him to enjoy his own information, for him to feel that he doesn’t have to tell each staff member, respite contractor or Camp Councillor about his struggles but can simply hand over his profile for them to learn from. I provided the information and observations as well as found photos of pride for him (the faded photo of him getting a bulls eye in archery) and Malcolm proofed it.
Malcolm’s one-page profile has been shared with his Respite Contractors, his homeroom teacher, and all other supports in his life at school. We have also used it for his transition into a new school where he will be attending Extended French.
It has been very helpful to us as parents. It is easy for people to jump to conclusions about the behaviour of our son as it isn’t a common reaction for a child to try and hurt himself. The profile makes staff aware of this possibility arising but it focuses more on what great things my son can do and interests he has, and it helps people quickly want to get to know him so he can feel safe and appreciated without the stress of a poor reaction from others.
I have found that teachers and students are more protective of him and will rally around him when others might make fun of him or respond negatively.
Whether it is because of the one-page profile or because he is surrounded by a great group of people, it isn’t clear why he is now so engaged and cared about. But it is clear that the profile has eased the constant explanations, the reactions of others, and the quick to judge comments. Our energies are now focused on the future and not having to continuously inform and advocate.
I have found that our time is better spent with teachers and support staff just getting updates and funny stories during meetings now. I really enjoy just listening during a conversation rather than informing and so often there is only positive information being passed to us and not the constant worries of the staff who may not understand why Malcolm is acting in a certain way.
I believe that Malcolm’s one-page profile has helped others move past the negatives and the uncertainties and just see the child.