Why does being a parent of a special needs child have to mean a lifetime of tough decisions, fights and guilt?
As if having a child with health worries, developmental delays and a multitude of other concerns wasn’t enough for parents to cope with, we also have to become the decision-makers on many (if not all) milestones in their lives. And most of those decisions are made over subjects that we’re no experts on (but we do have to become as well-versed and informed as we can be).
For example, for a typical child, the path of education is a well trodden one. We know that when they reach a certain age (actual age depends on which country you live in), they enrol in school and begin to learn from a curriculum that has been carefully built by professionals, tested and used with success for years. It will have been tweaked and continually monitored to ensure that it is the best and most suitable curriculum it can be. You enrol your child in school, you have the excitement and nervousness of their first few days, then they settle into their new routine and follow the path that has been mapped out for them. There may be some hurdles along the way, frustrations with teachers, issues with certain policies, conflicts with other children – there will always be bumps on the road – but the decision-making process for where your child will attend school, what they will learn and who will work with them along this path, has already been made.
For a parent of a child with special needs, it’s not so simple. The big debate is whether to send your child to mainstream school, and with that comes the fight of getting 1-1 support if you feel it’s required, or to a special needs school. This sounds simple enough but there are so many different factors to take into account. For many of our children, it’s not a clear-cut decision. There can be advantages and disadvantages to both – and it is a situation that must continually be monitored to ensure that the decision you made in the first month, is still the best one in the third month, sixth month and so on.
What if you can see benefits to each of the options, and are stuck with what direction to turn next? What if you desperately need advice from the ‘experts’, the professionals who have lived and breathed educating a child like yours and can describe the successes and failures? But what if you can’t find that expert, that professional, because nobody has encountered a child like yours before, and they don’t know what the best option is? You have to become the ‘expert’, you have to become the decision-maker on the path your child should make with their education – but other than your own education (decades ago!), you have no other experience in the world of teaching and schooling.
What if you look at all the options and feel that a mix of each of them might be best suited to your child? But what if you are then presented with a barrier because your child doesn’t quite meet all the criteria for the input from one of the education options? What if the next step is to fight for something you hope will be a good cocktail of education methods because it’s what your gut tells you. It could be a wasted fight because your argument might fall on deaf ears and not actually come to fruition; or your fear that what you’re fighting for isn’t actually the answer might become apparent and you feel like you’re wasting yours and everyone else’s time.
Deciding the best path for your special needs child is incredibly difficult and exhausting. And it comes with very little guidance and support.
We’re into year 2 of Tilly’s primary education and although we’re happy with how she’s developing, and how she’s coping, we are questioning when the right time to move her from mainstream schooling (with full-time support) to a more specialised schooling approach should be. She’s happy, she’s busy and she’s managing well – but we know that there are areas of her own particular development path that could be met in a better way at a specialist school that is attached to her mainstream school. BUT…getting access to that school is not straightforward. There is strict criteria to be met (which I’m sure Tilly will fail) – and I’ve heard that it is a fight that has been lost by many parents before me.
There is another option for her which is a 20-30 minute car journey away (not fantastic for a girl who can get car sick after 5 minutes) but my gut instinct tells me its not the best place for her – not yet anyway. The benefits of mainstream schooling still outweighs this option.
So what do we do…settle for what we have, send her somewhere I don’t yet feel is right for her or fight for what we hope will add that little something extra, something that could nudge her development along that bit further?
There is only one answer. I will fight – like I always have. I’ll give it my best shot, I’ll get prepped, will get my case ready to present.
But seriously, why does it have to be so damn hard? We need a break, we need our role as parents of special needs kids to become easier.
We need someone, somewhere, to make it easier. A road well travelled.