Square Pegs and Round Holes

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.

2012

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.

Julie

One Comment

  1. Hi Julie: This was a very beautiful, moving piece. I totally hear and get what you say about feeling like KK doesn’t fit and that you’re constantly trying to make a square peg fit into a round hole. I think it’s awesome that KK has friends at the preschool program. People are very hung up on age and their kids having peers the same age and I think it’s a very unnatural pressure that we put ourselves under. I bet you’re 10 years younger than I am and yet we can still be friends. I’m not sure if you read the interview we did with BJ Miller, who became a triple amputee? He talked about how over time he finally got to a point where he really got into his disability/difference in a fun way — like he’d play with his artificial leg. And he said instead of trying to hide it or deny it, he had to embrace it. I thought about that recently with Ben and the fact that he still loves the movie Toy Story and is in love with Jessie, the cowgirl. It’s not “appropriate” for his age, but I started to think why shouldn’t he get joy from something he gets joy from. So I stopped trying to steer him toward more age appropriate things and feel embarrassed when he’d sign about Jessie. And today we even went to his still favourite store — Disney store — and he was in heaven (and even though he already has 2 Jessie dolls he got a third). He loves any female characters with red hair.

    Anyway, I just thought about all the time I’ve felt negative about him not doing age-appropriate things and what a waste of energy it’s been — and how much stress it’s caused me and I’m sure him. Because it plays out in us trying to change them, trying to make them do something a typical peer might do, rather than what they can enjoy in the here and now.

    So my hope for you would be that you could let yourself totally get into and enjoy KK’s love of being around other kids and the hugs she gives them, and forget about the their ages.

    Anyway, I know you addressed much more here than this, but it just made me think about how much time and energy I’ve put over the years into wishing Ben was different, instead of enjoying him exactly as he is. And I’ve thought a lot about how I would feel if someone close to me was wishing I was different all the time. It creates so much stress.

    It’s hard, but it’s so important to enjoy those moments that you speak of where you are so caught up in something with your child that the stress melts away and you can just be present and not worrying. And also, what you said about how huge the tiniest bit of progress for our kids is so true. They have to work SO HARD for what comes effortlessly to other kids. It’s so unfair.

    And the combining of 4 signs is AMAZING!!!!! Does KK like any of the signing times videos — or other videos for young children that use signs?

    Thanks so much for sharing this. Louise

    Reply

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