This is an interview I (Hannah Noble) did for an education conference in Sept 2016. If you are wanting to watch it instead, you can watch the talk here. This was based on the topic of children with disabilities in the education system (specifically early Childhood Centres in New Zealand) and the parent’s experiences. This conference was for teachers so is written for them, but anyone can get something from this.
Hi, I’m Hannah. I’ve got two kids Jesiah who’s 5 and Isabelle who’s nearly 3 and an amazing husband Isaac. At the time of writing this, Jesiah has just started school at 5.5 and sp
Jesiah is my boy. 5 years ago – after a really difficult pregnancy – J was born at 29 weeks.
After two months in the hospital, I was that typical neurotic mother of an early prem worried about bugs and illnesses – and this just increased when at about 2 when he started having lots of fevers due to a medical condition.
So far in his 5 years, he’s had around 100 episodes of fevers of 39 or higher.
His development has been slower than normal, though not very obvious (and so close to caught up!) now to others and he’s been attending the champion centre weekly for the past three years having developmental therapy. There’s still some issues with the way he can handle things and he find some and new movements harder to work out than others may. But overall? It’s incredible what my boy can do!
Isabelle is 3 at Christmas and her health is now great. She’s passionate, she’s assertive and she’s really really active. It looks like she’s never had a care in the world.
In reality though, at 8 months we were faced with a paediatrician telling us that she needed genetic testing, MRI, lumbar puncture and that she had epilepsy. She was going to need this medication that ended up stopping her sleeping. This medication was likely to delay her development permanently. She then got sick again at 18 months, something else serious but not picked up at the time.
As you can imagine, between the two children, other medical and developmental things I’ve not talked about, life for me consisted of a lot of medical information.
So whilst other parents were celebrating the first taste of chocolate, I was more concerned that the chocolate would mean a night awake with reflux. Or maybe laying awake at night on my phone researching things that the doctors had no clue about to try and find an answer for Jesiah being sick all the time.
This obviously was going to come through in the preschool life for our kids. Today, I’m going to talk about Jesiah specifically, as he’s the one who’s got those extra needs still – Isabelle, fortunately was later “undiagnosed” with epilepsy and has had no complications from this or the treatment!
But remember Jesiah fits within a context. Jesiah fits in the context of our family and we fit in a context of Isabelle and Jesiah’s triumphs and struggles.
Jesiah’s been in three preschools so far and home based care for a little while whilst I completed my degree. The first one was great for him. A small centre, but unfortunately didn’t have under 2 year olds and I needed Isabelle to do a few hours a week. After trying to do two preschool drop off’s for a bit, I caved and moved him.
The next centre was a struggle for us. It didn’t fit with what he needed or our family needed so we moved on a few months later.
They are now at Springs Community Early Learning Centre and it is exactly what they needed. A small, family feel centre that is so grounded in giving children the absolute best go possible.
What are my dream and aspirations for Jesiah?
When Jesiah was born, I was halfway through a Bachelor of Teaching and Learning, and now am qualified as an early childhood teacher. So these words are things that I’ve seen in my studies and the aspirations I have for him are really affected by the things I’ve learnt. The biggest thing is I want him to develop certain dispositions and ways of being. To be curious and interested in his world, how it works and to want to learn. To persist, and not give up on things. Life so far hasn’t been easy but that’s not excuse give up. I want him to be involved in his world – to have relationships with others and make an impact in a way that suits him. I want him to be the best “Jesiah” that he can be.
What works well for Jesiah and us in a preschool?
Firstly, it works so much better for Jesiah and us when an interest and understanding of what us parents have been through and go through with our children. My children are different in a preschool from what they are at home, and it’s important to understand the child will be in different contexts. I remember seeing a child when I worked at a centre before having kids. He was 4, and I silently thought it was crazy that this kid who’s run all day needs a pushchair to get home. Now I get it. That kid will be exhausted, and those emotions and words will likely come out for mum like they never had at preschool. So seek to understand, rather than to judge like I did.
Jesiah was put into a centre, not the current one, for a few hours a week at 3. They didn’t see him as difficult or frustrated at all. Yet when we got home, he’d start making bruises on his forehead as an exhausted and overwhelmed wee boy headbanged into whatever would hurt him as soon as there was any reason for a tantrum. There was a feeling that we were making it up, or that it was somehow “our fault” so we shared less of this side of his life. Part of his life is made up of hospital or doctors visits, him deciding to have a sick bowl in his bed so he feels safe if he’s sick and taking medication or checking temperatures. He has a lot of feelings and thoughts around this. Don’t be scared of asking about children’s backgrounds and health. Talk to the children about the experiences they’ve had at hospital – they need to share it to completely understand it. Preschool should be a safe place to share that. Asking the parents about the experiences helps the parents feel like the expert about their child, and it helps you understand what that child has been through. Who knows, it may have only been last week they were in hospital for something.
Challenging the child.
There’s nothing I love more than having a video shared of my son at preschool who’s balancing on a makeshift seesaw and pushing himself beyond what I’ve seen. What stood out most as I admittedly tried not to cry watching it, was the teacher. She was gently challenging him, pushing him beyond limits that he’d set upon himself. Challenging the child to do more, but still to accept the fears and concerns he had about getting active. Again it’s in context though. He has a great relationship with that teacher and that moment wouldn’t mean much if that teacher didn’t know him, have a relationship with him and understand his limits. The relationship with the child is just as important as the learning.
What doesn’t work and creates barriers for Jesiah and our family?
I’ve not experienced barriers with our current centre and it’s been a while now since been in other centres, but three things particularly stand out as key experiences of ours. These are more personal ones and may look picky. But they are big things that have stood out to us and have been struggles or reasons that we’ve left centres.
The first is centres where staff don’t have time for individual children unless they are assertive in their needs for attention or aggressive. It wasn’t realised until Jesiah had an Educational Support Worker that he spent pretty much his entire day in the sandpit. This was an issue so much other developmental play was being passed up to near a teacher if possible in the sandpit. Another issue along the same lines was that they didn’t “know” him. No teachers got to know him well enough to know when he wasn’t himself. There a few times I picked him up and his temperature was 39 degrees. A couple of times he was in hospital that night. These are things that should be picked up in an average child,but even more so when the teachers know it’s going to happen and have been asked to keep a close eye on it. I don’t have the answer to fix this, but somehow, children need to have attention paid to them whether they are assertive and passionate or quietly sitting in the sandpit every day.
Now the second thing, one of the beauties of the early childhood sector in New Zealand is that it generally runs on a credit based (looking at the positives, not the negatives) model. You look at the things a child is doing and amazing at, rather than focusing on the struggles (a deficit model). I’d like to challenge that. In day to day time with a child, lift them up, and help them soar. But be aware at the same time of milestones and development. The one place that this is so necessary is ensuring you are sharing everything you can about “what’s wrong with the child” in developmental assessment forms. Unfortunately, the credit-based model, this isn’t the way developmental support programs can work as they need to know the issues to help the child with these. They need to know the issues so all supports can be accessed. So be honest, share those little things that are odd about the child, that aren’t where you’d expect them to be developmentally and that you think may be worth sharing. They could change things in terms of getting help or being denied extra help.
Being Unintentionally Labelled as “Different”
And finally, I want to you to look at your practice and the practice of the settings you’ve been in particularly in relation to teacher aides, support workers, specialist teachers and the teams that surround children. The child does have this extra support to help them learn and become all that they can be. But they are still a child in your classroom. They need your time and attention and to fit in as one of the group just as much as anyone else needs to. I initially said no to getting Jesiah an educational support worker he was entitled to. I had seen it where the child had a support worker and it was like they were just “that person’s child”. They weren’t called inside at mat time if they hung outside, it was their support workers job. They weren’t supported in hanging up pictures of their art. That child was the support worker job. It creates such a barrier for the child to connect with their peers. Treat the support worker as an integral part of the team. The child as if there’s no one there with them. Interactions and relationships are great for development! Eventually, I gave in and we got a fantastic support worker who having her own child with extra needs understood what I was scared of. That my child would be different. Stand out as odd. Be labelled as having “special needs”. Because that’s it. I want my child to be normal, to be treated just the same as any other child. Because he isn’t “special needs”, he’s actually just special.