Spitting into the Wind

All mothers are heroes. Single mothers are their own breed of “incredible”.

Special needs Mum’s take it to a whole new level again.

I find as time goes on, it gets both easier (in some ways) and tougher in others to raise a child with disabilities. Yes, we have had fewer hospital admissions in the last year. (Hooray!!!) What gets harder is the reactions from others when you have the rare opportunity to unburden your heart about your day to day struggles. When you try to tell people about the accumulation of stress, trauma and exhaustion all piled on top of each other – you are met with confusion and misguided positivity. “But – your son is doing so much better now! Look at everything he’s achieved!”

They’re not wrong. The difficulty is, they’re not looking below the surface. Yes, your child may be excelling. But how did he get there? Who’s effort was the constant wind behind their back pushing them to achieve normal but – in their case- challenging milestones?

Every special needs parent (or complex medical needs parent, in my case – there is a very strong distinction I find now) knows the eye watering challenges, sacrifices, loss of their own identity and incessant pouring of their own energy into the ones they love. They will be familiar with the concept of having nothing left to give but the medical appointments don’t stop. Their child’s medical emergency won’t wait. They will know what it’s like to be in pain within their own body but to not even care about that. Their child’s needs are far more pressing.

In a world where it is sometimes hard to laugh, there is one failsafe to inciting hysterical mirth. Anyone that says to you unknowingly, “What do you do to relax or look after yourself?” almost deserves the bark of laughter that escapes. Don’t get me wrong, it’s a very caring question, said from a heart of concern.

But it exposes something uncomfortable to me starkly. The person asking does not live in my world. They do not live in a world of complex medical needs, where any mother gets piled with task list after task list from each of the many medical professionals involved in her child’s care.

That is why I call special needs Mum’s super heroes. They have to keep their household (and any other children) functioning, they have to front up to endless medical appointments, they need to cook dinner and do all those “usual” Mum tasks, while being a full time caregiver of a child who should have long ago left babyhood behind. For many of these Mum’s, it is a lifetime commitment of an adult-child who still has toddler or infant capabilities.

I had to reassure Cayden’s new Education Support Worker (ESW) this week. When his Advisor of Deaf Children specialist came into his daycare and started giving all her suggestions, it started to raise questions for the ESW. (Who is also the daycare manager, and is studying to become a skilled Early Intervention Teacher herself). “Do we really have to do all this, Karen? Is it necessary?” she asked me.

I smiled at her with pity. “What you’ll learn is that every specialist has tunnel vision. They are all only interested in their one area of medical expertise they hold. Very, very few will ever look at the broader picture and what is involved for the family as a whole, bigger unit. We try to do everything each one suggests, but at the same time, you can only do what you can do.” It was an affirming feeling, to have someone else join my world and balk at one of the first appointments they were involved in and the attached “developmental task lists”. I didn’t bother saying I couldn’t count how many hundreds of these such things I had encountered.

What people living in a “normal” universe often don’t understand is the level of pressure on special needs Mum’s. Every mother wants the best for her child. Every mother is driven for the best outcomes for her child.

But not every mother is still trying to teach her child basic survival skills years on – how to eat or consume any food themselves, how to safely drink anything for themselves, how to dress themselves, or how to toilet them. Each of these skills can take hundreds of hours to teach for a child with disabilities. There is an inherent sense of pressure for a special needs Mum. “If only I could do that *one task* more, my child might have a better outcome. Maybe the gap between them and their peers wouldn’t be so large.”

It becomes an unending, driving force.

Now think about if there are numerous *one more task* scenarios for numerous critical outcomes. How would you choose which to prioritize?

Can you choose? Or do you, like me, try to do all of them simultaneously – but at least weight them in order of importance?

It drives special needs mothers right into heightened states of anxiety, burn out and levels of exhaustion that is hard to imagine. I could go into the weeks, months or years some mothers endure of hospital stays with disrupted sleeps, traumatic medical procedures, widening levels of expectations and tasks – but the reality is simple.

It is a life long task, and it is not easy.

Anyone that looks at you and thinks that because your child has made progress in whatever areas and therefore you should be suddenly “okay” has not truly visited your world.

The stress is cumulative. The trauma is cumulative. There is almost never time to cry. There is almost never time to grieve the life you thought you would have. You live in this world – you don’t get to leave it and reassure yourself the other world of “normality” still exists.

Then there is mother guilt. If you acknowledge your grief and sadness over this new, special needs life, are you disloyal to your child? Would some people think you didn’t love your child? Heck no. We all love our children fiercely. We champion them fiercely.

But who champions us?

Those are the moments where I feel like I am spitting into the wind. I am crying out for people to hear the difficulties and just let me have a listening ear and a warm hug to cry within. I often say dryly the only people I get to talk to are those paid to be in our world medically. Trouble is, those people don’t give you hugs. They are also slaves to the clock.

Most people I encounter outside of our medical world want to minimize our struggles and brush it away. I’m sure it’s not intentional. They don’t live in this complex medical needs world. And I know that’s true, because I didn’t use to live here, either, and I intimately know the difference between the two.

Next time you see a super-hero special needs Mum, give her a hug. Even if she looks “okay” on the outside. There is probably a wealth of struggles, fears and worries underneath the surface that she is too out of touch with for her to be even aware of.

For others of us, who find ourselves on the brink of coping under the weight of medical “task lists” sometimes – that hug and brief moment of normal, standard, and so very rare social connection – can be a lifeline.