KK is a square peg searching for a round hole – or rather I am doing the searching for her.
When she was young (under 3) I didn’t worry as much about fitting her into a group, finding and making friends, ensuring an appropriate learning environment for her. I didn’t worry because we were so occupied with things medically (and still are for that matter). I was taking KK to her army of therapists weekly for sessions in auditory verbal therapy (AVT), physiotherapy (PT), occupational therapy (OT), speech therapy (SLT), infant hearing program and ASL (IHP/ASL). We had appointments almost daily, so playgroups and preschool programs weren’t really high on my agenda.
Over the last 4 years, I think I’ve averaged 3-4 times a week to the children’s hospital or its affiliate children’s treatment centre. We also had KK enrolled in an amazing preschool program where ASL had been part of the curriculum for more than a decade. With an assigned program assistant, who also knew ASL, KK was very happy to attend 2.5 hour days 2-3 times a week.
KK is five this October. She ‘should’ be at senior kindergarten. It is a whole other post for me to write to describe how I feel about her not having moved on with her peers toward this milestone. It breaks my heart that she adopts new playmates, at younger ages, every year.
We did enrol KK in the school board junior kindergarten program for this September. We thought keeping her a year behind might work, and that given appropriate support by an educational assistant (EA) who had appropriate skills in working with a special needs child and strong sign language (ASL) skills, KK might be just fine. In order to prepare for the coming school year (2012-2013), KK had to do cognitive psychological testing with the school board, we had several meetings with the learning support teacher of the school, and the itinerant teacher of the deaf and hard of hearing, I gathered reports and documents from her key physicians, developmental pediatrician, OT, PT, AVT, and SLT.
And then, at the end of June we decided that kindergarten might not be a good fit for KK. Some of decision was based on medical discussions we had had in the spring with her doctors. I’m not yet ready to share what those discussions were about, but suffice it to say, we didn’t feel like starting school in September was a good choice for KK. I also took in consideration KK’s development. She is moving forward in all areas of development, albeit very slowly. It was difficult to know where KK would be in September with language, social skills, cognitive skills. She isn’t yet potty trained, has limited communication and she had started screaming quite a bit.
We had other options we had explored for KK for school; private kindergarten and other preschools. We finally settled on a preschool setting that she had had previous experience with. The children would be much younger than Kate, but there would be low ratio and with a program assistant assigned to facilitate learning and peer interaction for Kate, and all her therapists would work with her in that setting. We thought it was the best decision.
The dilemna for all parents, not just those with specials needs, is that you are constantly second guessing yourself. You want the best for your child – it’s instinctive and innate. You want them to succeed, to be challenged, to have good support, to make friends, to develop appropriately.
For special needs parents this ‘second guessing’ is rivaled by no other. We never feel like we are doing all the right things for our kids. We know we should be doing more therapy at home – and we are continually advocating for services that we may or may not be getting. We know we need to dig in everyday and do the best we can for our special needs child, because if we don’t and we lose a day, we don’t climb that developmental ladder and we worry we have compromised our child’s future – their basic ability to be independant.
I personally think it is a bit manic – the constant pressure that many special needs parents put on themselves. But I also understand and have to admit I worry constantly about KK. You live it everyday because you have to. There are moments when you can just enjoy the day, and those are so special. But because of regular therapy schedules and therapy work at home, the constant worry of ‘doing enough’ is regularly present. Hell, if I forget to sign to KK and just speak to her I feel guilty.
Which brings me to square peg and round holes.
KK is at many different levels of development in all areas. Generally she is similar in skills to a 2-3 year old. Her language (comprehension and expression) is more like an 18 month old. Socially she is very good, but is unsure how to engage peers in sustained play. She loves her ‘friends’ though, and is so happy to see them – greeting them with hugs. So here lies the dilemna. Where does she fit? Currently she is a preschool program with children aged 2-3 for the most part. The children are lovely, but as typically developing preschoolers their play, interaction and language skills are young and it is difficult enough to engage with KK. We also haven’t found an appropriate program assistant for KK, and while the classroom teachers are well intentioned and have worked hard to learn some sign. They aren’t able to lead Kate into the direction of 3-4 sign combinations in American Sign Language (which she is now capable of). KK also needs much direction in cognitive skills and behaviour and without a program assistant this is difficult for the teachers to do with consistency and at the direction of her therapists who set specific goals and tasks.
So where does that leave us?
Feeling sad and frustrated. None of these emotions can be directed at anyone in particular, they just are. There is also a profound sense of solitude on this journey with a special needs child. There is no road map, and because there is little known about the cause of her delays, it has been a challenge for her therapists in working with her.
Life with KK is a constant balancing of advocating for her and frankly, not pissing anyone off by pushing too hard. We know the supports we need for KK, and we have searched everywhere to find them. Sometimes we do find them, and sometimes we don’t. When we don’t, we fill those gaps as best we can. However, this compounds that feeling of ‘not doing enough’.
A good friend made a casual remark the other day, that KK just ‘is who she is’, and I agree with that. I don’t want to be interpreted as diminishing anything about her or anything she might be capable of. But it still needs to be said and understood that every day is a challenge, and every little gain we make is a momentous milestone. This is why we keep searching for the round holes that just might be a bit more square in shape to fit our little peg. She needs to fit somewhere.