The Last Day of School

This was Kate’s first year in public school. I remember registering Jack for school – we went to the school in February and signed him up for the following year. It was simple, straight forward, typical.

Kate’s process of signing up for school was a herculean task of information gathering/sharing, analysis of pros/cons, assessments, meetings and paperwork. We started in January interviewing schools in collaboration with a consultant from Children’s Integrated Support Services, then we had many meetings and conversations with the school board about Kate. Following this were assessments of Kate, and a lot of paperwork. Her school file soon reached capacity and she hadn’t even started yet.

All the process still led us to a what was a false start from the beginning – because of health concerns, Kate didn’t start school as planned. When we did finally decide that school would work and was the best place for her, there was a significant amount of work in getting started. More meetings to determine the supports that would need to be put in place Kate – which at minimum would be a full time educational assistant (EA) to support her physical, medical, and communication needs. Assessments for occupational therapy and physical therapy would come much later – in the mean time, we did the best we could advising the school on supports for Kate from a physical environment point of view. We knew it would not be perfect, our goal was for Kate to get started and to be safe. We thought the rest would follow soon thereafter.

Junior Kindergarten this past year served as an experience and education for all of us, not just Kate. Kate did very well, considering her poor health this year and subsequent frequent absences from school. Her absences didn’t help her with maintaining consistency, but she had a wonderful EA who kept her mornings structured and predictable – both very important constructs for Kate to be successful at school. Her itinerant deaf teacher provided knowledge about how Kate’s classroom environment could be better managed to make her learning experience optimal. I also attended several meetings to share my experience and knowledge about Kate and how she could be best supported. I knew the school had not had a child like Kate before (and likely never will again). While my goal was to help them help her – it was also to ensure things got done the way they would work best for Kate. I would say for the most part, things went acceptably well. There were bright lights among her educational team, and there were others that we had to manage a bit more. What I was not prepared for was the constant vigilance and advocating that would required to ensure Kate had the proper support and that her team did learn and adjust to her needs. I didn’t have a binder for school like I did the hospital, but after the first 2 misses the school made, I pulled one together.

Slowly over the first few months of school, a pattern of strength and predictability grew. Kate got to know her team intimately, not just being comfortable, but truly understanding what was being asked of her and giving the constructs, familiarity and support to do her best to respond to the demands placed on her. Kate’s team also got to know her, how she communicates, what she does and does not understand, her intelligence and capacity to learn – though different from a typical child. They learned her patterns with her health, when they could push her through a task and when she was too fatigued to continued. A balance was struck – and it was working well.

The problem with predictability in the school system? It doesn’t seem to be valued. Just when we thought we were cruising, had the school organized for Kate’s needs with teachers, itinerants, EAs, therapists all in place, sweeping changes are made at the Board level.

We found out at the end of Kate’s year, with less than 2 weeks of school left, that she would be placed in a classroom with 2 teachers sharing the position, 2 early childhood educators supporting the teachers, 2 separate educational assistants assigned to her (one for the morning, and one for the afternoon), and her itinerant deaf teacher had been reassigned to someone else resulting in a new itinerant for Kate come September.

It was unacceptable, and I learned quickly, and much to my dismay, that the bureaucracy has a little concern for the children – even those whose challenges far outweigh the ‘constraints’ of the system. Human resource priorities, system pressures, or no excuse at all, were the reasons given to me for unacceptable and sweeping changes to Kate’s educational supports for the coming year.  The most famous quote of my many meetings with school and Board officials was, “I know nothing about your daughter, I’ve never read her file”. This after a one hour conversation concerning a human resource issue specifically related to Kate!

I learned a long time ago to not take no for an answer, that there is always a way – even when you are told there is not. Kate taught me that and I know it to be true. So I have managed to change back some of the things that we knew would not work for Kate. I’ve managed to change a few things, and I am still working on the rest. What is sad in all this is that I have to do this. That we need to be under this type of stress. That at school, a place where Kate should feel safe and secure and where her best interests should lie – they don’t, (unless I fight for them).

All that aside, Kate’s year was wonderful. She learned to be at school, and we learned the importance of her being there, especially at a school in her community where the children on the playground know her, where her brother attends, where there are familiar parents/adults dropping off and picking up. She is part of her community, which for a child with a transient peer group and special needs, is very important. This is how we ensure, in part, that she is part of her community.

I know Kate is a challenge, and that moving her through ‘grades’ will be difficult. Her peer group will change from year to year, and it’s unlikely she’ll never have a consistent group of friends or classmates that she will move along with. That makes me sad for her, it’s another little loss in a long line of losses, but what is amazing is that Kate doesn’t seem to be phased by this.

I don’t know if Kate will ever move on to Grade 1, or if she’ll be able to stay at her school. A more comprehensive special needs program might be what is needed in the future, possibly one with a strong ASL component to facilitate better language and communication. As with many things about Kate, this remains to be seen and we won’t know until we know.

While other parents worry about who their child will have for a teacher next year, or will they have friends in their classroom. I worry whether Kate will be understood by her new team of teachers, will she be safe, will she have the support she needs, will her teachers work to make her truly part of their classroom and accommodate and integrate her by actions and not just words, how often will I be called to come pick her up, and will she make a friend (a real friend).

I am handing over a little girl who has little ability to communicate, and who is sick often and many times with little warning. with adults who don’t know her well. I have to have faith in the adults who will be with her all day that she will be safe and that they will work to understand her quickly and recognize her strengths as well as her limitations. I am already preparing for the meetings and plans that will be required to support Kate the way she needs to be and is entitled to be. I am constantly amazed at how many people will sit around a table to work out the details as to how one little girl can attend kindergarten. I’ll have my binder with me.

For now though…we’ll set that aside and let summer wash over us.

 

Julie

 

5 Comments

  1. I remember your posts when Kate first started school! For our kids, the school IS the community and the heart of belonging. The board sees its role as having someone (anyone) with a particular qualification with your child. Continuity is vital to the child and family and irrelevant to the board (doesn’t relate to board accountability). It IS so sad that without a battle, the school experience for our kids would be minimally OK and possibly not even that. It’s great that your particular battles have paid off this year for Kate!

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    1. It has been quite a learning experience. For some reason I thought school would be a safe place for Kate where I wouldn’t have to advocate so hard. Maybe I could relax and breathe a little, take my foot off the gas (so to speak). Not so unfortunately. I watch school closely and I push for what Kate needs while still trying not to alienate anyone. Sort of like playing nice and gently coaxing them to do/get done what is right. It can be exhausting.

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  2. Hi Julie I’m not sure if you remember me. I reached out to you earlier this spring because I was diagnosed with an extremely rare mitochondrial disease. I live in BC. I have to thank you for the advice you gave me. I have found researchers in Italy, England, US and Canada that are interested in my case. Now to get them inspired! Reading your post made me believe I could do it when my batteries felt so burnt out and fading quickly. I am heading to meet with Mark Tornopolsky and a biopsy this fall. If you live in the area I would love to connect with you. Reading about your post of the public system is something that I have seen so many friends with children who have complex autism or other special needs face in bc too. (Side note, Secretly my gut thinks they might have mito… As I learn more I will share with them). In the end they followed what we did with our kids in bc and that was catholic school or any independent school. Right now the church based schools are strapped for funding and out here they are starting to welcome special needs children. They allow parents to direct a lot more of the IEP than public schools. There are drawbacks though, I don’t think the therapies like speech are covered. Friends that have made the switch with special needs kids have been very happy. As for fees, if its religious based independent school you can write off some as a donation so costs aren’t any more than preschool. Thought this info might come in handy in case 6 – 8 adults involved in Kate’s care at school turned ugly! Otherwise I wish you all of the best with it as they will all notice that stability is what she needs most! Even as an adult with mito I can’t handle too many different caregivers coming into my home to help, so I get it. Good luck and take care Lisa

    Sent from my iPad

    Reply

    1. Lisa, of course I remember you. I am so happy for you that your diagnostic odyssey is moving forward. Finding the right people is the first step, and it sounds like you are assembling quite a team.
      Thanks for your advice about schools. We had been counselled about looking into the Catholic schools. We chose not to because it seemed the resources for Kate were better in the public board. I appreciate what you said about the IEP. I was quite surprised and taken aback about our lack of involvement (at first). It wasn’t until I pressed the situation that things were done more appropriately. The system seems to be constipated with process and procedure and not at all responsive to the needs of special needs students. Flexibility for them is key, and I can’t imagine that this can’t be done for this very small population in the schools. “Our hands are tied”, seems to be the favorite quote.
      Best of luck with all of your medical investigations.
      Julie

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  3. Julie as always than you for your honesty and reminder we have to push for what our kids need. It was a good thing to think about after leaving mine at a camp this morning.

    We ended up choosing the Ottawa Catholic board based on phone calls with all the schools in our area. (A number of the other families we met at OCTC also chose OCSB based on discussions with principals).

    Our JK teachers were fantastic, but will change next year based on retirement and medical leave, which has me slightly nervous. Our strongest advocate was the resource teacher, who fights for each kids under her care and was so reassuring when I called about things kids were saying to our son.

    Good luck with September but for now enjoy the summer. Thanks for sharing the She Knows article about family fails on Twitter too…. We clearly fall into the “but he is doing so well and it go away group”.

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