There’s this strange dichotomy in the world of special needs.
There’s the parent on the one hand who says, “I love my child and wouldn’t change a thing about them”. And then there’s the relieved mother who gets a 12 week pregnancy scan of her second child, after having a first child with CHARGE Syndrome, and says how relieved and happy she is that the baby looks healthy and typical.
Of course she is relieved. Her first child is loved, wholly and completely. Her first child is perfect in herself. But her first child also has operations and pain and trouble breathing. Her first child has long stays in hospital with every cold she gets, and more therapy appointments than the mother can keep up with. Her first child may never be able to communicate with her and might die young because of her conditions.
We need to admit here in this world of special needs that not all conditions are equal, and within those conditions not all situations are the same. When your child has a syndrome that affects their health and quality of life, then yes maybe we would change something about our child. If we could take away their pain, or give them the ability to communicate and interact fully with the world, I would guess most of us would do that. We don’t want a different child, we want the children that we have to be healthy.
We need to be able to recognise the diversity within our own community. Autism has very different challenges to Downs Syndrome, and again to CHARGE Syndrome, and again to Hurler Syndrome or leukodystrophy or cerebral palsy, or Wolf Hirschhorn syndrome. Within each of those diagnoses there is a huge spectrum of abilities and health. Being a parent of a child with CHARGE Syndrome does not give me the right to tell another CHARGE parent how it is. I don’t know all their struggles, even if I have a child with the same condition.
Having a child with Downs Syndrome, or CP, or Autism, or any other condition under the sun, and there are too many to name, does not mean you know what is best for another family dealing with special needs. You don’t get to judge. Neither do I.
My decisions and your decisions about our children are just that, our decisions. We reprimand Mummy’s groups for being judgemental and saying there is one way to do something. One way to get your child to sleep. One way to feed your child. One way to interact with your child and calm them. But we do it in the special needs world too.
There are so many divides and sub groups. They are all passionate and they all seem to disagree.
We say people first language, but not everyone likes that. There are members of the Autism community who want to say their autistic child instead of their child with autism. Let them say it. There are people in the CHARGE community who endearingly call their children little CHARGErs. Their children have charged on through all their challenges and the name seems to suit. But others find it labels their child and reduces them to their condition. Let them both do as they please. It’s not hurting anyone. It’s empowering for the parents of the little CHARGErs, and similarly it feels right for those who say my child who has CHARGE Syndrome. Does it make any difference to you which way we say it? I’m not trying to say that words are not powerful, they are. But for some, there comes a sense of power in embracing a word, while for others they want to have meaning beyond it.
We say inclusion is the only way, when I personally thought that idea for Eva was terrifying. If she had reached the age to go to school I didn’t want her in an underprepared school with teachers who didn’t know how to look after her and would get frustrated with her. I didn’t want her in a school that was struggling to get funding for teacher aides. I wanted her with therapists and kids like her. I wanted her to be able to focus on what made her life better, not the curriculum NZ’s government has decided fits the standardised kid. I wanted her to be able to do hydro therapy and physio as part of her school day, not sit at a desk where her being there was seen as important in teaching the other children about diversity. She didn’t owe anyone that. It wasn’t her job to teach the world. I say this all as a teacher who knows very well how little training I received in terms of having a child with extra needs in my classroom. That is to say, nothing.
Inclusion is fantastic. It is something we should push for. But it’s not for all. That’s not how this works. What is good for one may not be good for another. We need to have the funding and facilities for both. Because what I can see is that there are very few schools set up to teach kids like Eva and when they do exist they have a waiting list a mile long. That option should be there for her and other families who see that as the best option. There shouldn’t be just one school to line up at. There should be options.
And when you take away those schools and focus on inclusion, that doesn’t mean you cut the funding. It doesn’t mean you save money because the schools themselves were too expensive. This is not an area you tighten your belt on. It means your pour that funding into those schools who are practicing inclusion. You make sure they have trained staff. You ensure each kid who’s there is funded to the level they should be. You don’t get to wipe your hands of these kids just because they are in public schools. That solves nothing. That’s inclusion but who wins in that situation? Not the teachers. Not the students. Certainly not our special kids. Those schools need help and support and funding to make it work as it should. From what I can see, they don’t have it. Or it they do it’s not nearly enough and special needs teachers are bending over backwards to accomodate children who don’t quite qualify for the right level of funding.
Even without the government’s help with inclusion, this way is seen as the best way, and parents judge each other on their views on it.
We need to support each other and recognise each other’s challenges without telling one another what to do. Because that judgement starts at such a fundamental level, and it can get nasty. It starts at the level of how we accept our children. Because like our children, we are all different, and the path to acceptance is going to be different for each of us. Maybe your child is a gift from god and you wouldn’t change anything. Maybe you see your child as teaching you and the world about diversity. But god didn’t give me Eva, biology did, and she’s was not here to teach anyone about anything. That was not her job or her responsibility. And for me to think that about her feels selfish as if she was only here to serve others’ learnings about life.
I came to accept Eva. Love Eva. Be her advocate and greatest cheerleader. But I would have taken away so many of her challenges if I could have. That doesn’t make me a bad special needs mother. It makes me a mother who didn’t want to lose her daughter at 10 and a half months. It makes me a mother who didn’t like seeing her daughter cough until she threw up. It makes me a mother who wanted to take away her pain. It makes me a mother who wanted to keep her operations down to the bare minimum.
When a mother of a special needs child hopes and prays that her next child is born without congenital conditions and health problems, we can see that this is not an easy life. For anyone. And that’s not something we need to be ashamed to say. We have enough challenges without shaming each other for admitting that it’s hard. Because while it’s not always the life we would choose, we would always choose the children we have.