I expect my longest walk is shared by many other parents of special needs kids each and every day they attend school.  As if it wasn’t hard enough taking my small son from the car, across the quadrangle, to the other side where his class was, on his first day at school, I also had to push him in his wheelchair. Every parent knows the pull of the heart strings when your last baby goes to school, but for parents such as I, the pain is palpable. I could barely hold it together.  I returned to collect him after school and he said words that still affect me.  “Did you cry for me today mum?  Don’t cry for me, I am just so glad to be here.”  Even at that young age he knew the stress I felt because of his disability.  His words however bolstered my resilience going forward.

I noticed early on though, how the wave of kids and parents first thing in the morning, seemed to cause a parting down the centre so we could pass through. Parents and children alike peeled aside as I walked from one corner of the quadrangle to the other.  Imagine Moses parting the Red Sea. It was other worldly. Everyone else was engaged with others chatting or playing as I walked alone, pushing Robs wheelchair.

I suspected time would cure the problem and I would be accepted as just another mum. But it remained consistent, morning and evening, week after week. It is only fair to point out that when my son started school he was the first child in a wheelchair to ever attend that particular school. There was concern about how he would get around the grounds, and I imagine a lot of concern about what I would expect from teachers who had never taught a disabled child. It was the 80s and he was one of the very first disabled kids in the state who had been funded for a teacher’s aid. So we were breaking new  ground.

One particular morning an event occurred that will stay with me forever, as it held the answers to why my life would always follow a different path.  As I reached my car after dropping Rob off another mum walked up and asked if she could talk to me. It felt like she was asking permission to speak and I could almost see her uncertainty. “Of course”  I said. “Why are you even asking. I’m just another mum.” “No you aren’t.” she said. “I could never cope with your responsibility and I actually feel really bad because I can’t even cope with my own son. Watching you every day makes me feel as if I am not a very good mother at all.” 

Well I was stunned. I told her how I hadn’t been chosen to take on a big responsibility because I was any different, or more knowledgeable, or anything else. It wasn’t a choice I made. It was something I had to learn to deal with in the same way she had to learn to deal with her son. I went on to say we are all dealing with issues our kids have, from learning problems, behavior problems, eyesight, hearing, illness. Some problems just happen to be bigger than others. I was the same as her but with a more obvious and ongoing task.

I thanked her for her honesty in telling me how she was emotionally effected by my circumstances. I could have felt insulted, or hurt and angry, or any number of things. I however understood her honesty had allowed me some insight into how I was seen around the school. It made me aware that people needed and wanted some education about how disabled people want to be viewed. That many people miss the underlying sameness we all share.  All of us, in one way or another, are struggling with many different issues requiring support from each other.

I realized there was one truth I had better accept because it was not going to change. My desperate wish to be one of the crowd would never be, not in the foreseeable future anyway.  I would always be viewed as knowing more, doing more, coping better and on and on. My peers would unknowingly set me apart, not because I did actually know more, or do more, because none of that was true. But perceptions are strong and not easily overcome. I would never really fit in and there was no way to change that. That almost crystal clear kick to the stomach precluded another bout of depression and fruitless search for meaning.  Again another trip to the counselor would prove pointless.

I hadn’t allowed myself to grieve because of guilt and self blame, and this latest episode had caused me to feel so sorry for myself all over again. At that point in my life everything was happening to me to kill my dreams, and ruin my hopes, or so I believed. I will keep saying it time and again. I would have been living a more mentally healthy life had I seen a grief counselor and dealt with my emotions, and that will remain my strongest piece of advice.

The years slowly passed and I wrote a few articles talking about disability and awareness, but the dark hole I was still climbing out of wouldn’t allow me the freedom to be the real me. That journey wouldn’t begin until I contracted a life threatening illness that took me down a different path. I am only here today because I was actually fortunate to become so ill.

1. If you relate to any of the above it is pointless thinking that others who haven’t walked in your shoes will have any understanding about your hopes and fears, but they do have the ability to listen and talk if you give them the chance.
2. It seems like a tough ask to expect to deal with difficult situations and at the same time take on the task of telling others how to help us. We are however the ones with the answers. We know best what we need.
3. You and I have no choice but to do the educating and open up about how we feel as parents and carers. if we hope to be accepted as one of the group we must show we are not satisfied being apart by staying quiet and withdrawn.
4. We have to show our vulnerability, ask for help, and then know just what the help is we want.

I believe it is a waste of valuable time protesting, complaining, and demanding our government puts more money into disability, or services and carer education, and then expecting those making the decisions to make the right ones. They are not personally raising children with disabilities or caring for aged or ill parents for the most part. Their lives are vastly different to ours.

We are a group of people who know exactly what we need to make life easier. We know how we want our services delivered, and we know what strategies would enable us to do more training, or work part time or help improve our stress levels, and I could write a whole list here. The point is there is so much said on Social media, at the school gate, in mothers groups, or behind closed doors. Yet who hears it other than the few people personally spoken to. The best people to say what we as parents really need, is us, and we must use our voice to write an email, make a phone call, or write a proposal.

I will give just one example. Waiting lists for services are long and after being part of an access and community group meeting at the hospital, I asked how come the name of the program for respite care had changed. It was just updated I was told. Then how come the waiting list is no longer full I asked. Well it is a new program so there is no one on it yet. A few questions later I had a story. I wrote about the new program and urged everyone who had been on any other similar programs to pick up the phone. It certainly caused a stir. It also highlighted the way waiting lists disappear, programs are slashed with the words no real need, not many on the list, and how money moves from one place to another and then back again. If you understand that you have the advantage of making sure you are on the list you assumed you are on. Don’t wait to hear. Ask regularly.

Parents of special needs kids, and carers in general, are in the best position to know what they need, how they can be helped, and why they need that help. It therefore becomes the responsibility of us to take the initiative and be more in control of the process. We are the experts in our own needs and we owe it to those we care for to really believe it.