I write this because I need to have a stern word with myself, and in turn, I am going to have a stern word with everyone who needs to read this.
Don’t be the cause of further hurt and harm to your child.
Being a parent of a disabled child is tough. It sucks, everything you had imagined when you were told you were expecting. The joy, the excitement and the usual trepidation disappear. You now have real panic, real fear of the unknown. The worst thoughts come into your head.
However, you cannot be using the ‘poor me’ excuse right now, or ever. You have to be strong, this is about your child, and they will need you more than you ever could have thought. This child will go through hell compared to what you thought would be their future.
By becoming the victim, you make it worse for your child. It isn’t easy, it is seriously hard, but if you start self-victimizing, you make your child’s life harder, more challenging.
By throwing yourself into work or distracting yourself with other vices, as I have done, you put all that pressure to raise a child with additional needs on someone else. Even if you say to yourself, I am making our family financially stable, it will be at the expense of depriving the child or partner.
A strong partnership is vital.
If you have the privilege of having a child with someone, you will need to commit a huge amount of effort into them. Without a partner or family support, it is almost too much for one person to take on alone.
The hard truth is that divorce rates and separations are higher in families with a special needs child. This is not the child’s fault. The added strain and pressure of having to look after and fight for your child’s physical and mental health issues use a lot of energy. With support, the family and/or partner can share the load.
From my perspective, I am a lot better at hands-on care with our son, and when he is sick at school, I’d pick him up or take him to appointments and make sure I’m there before and after school. However, my wife is fantastic at the paperwork and organising side of things, and boy is there a lot of paperwork. Organising medical supplies, pharmacy runs, different food requirements, different therapies. Its a minefield and a full-time job in itself. This is how we have balance in our partnership. And without each other’s hard work and support, it would be hellish to consider doing everything by oneself.
You have to be the rock for your partner.
Mourn your ‘old’ future, and accept your ‘new’ future
Everything you had planned is out the window now. The ideals of your child’s first steps in a few months, to them joining the local sports team or graduating university. Gone. Becoming the next world leader. No chance.
You have to accept this and change your outlook, and if you keep thinking they will be ok, they will get better. You are probably wrong. It’s hard to hear, and it took me years to finally accept this, but once you do, you can move on.
And the good thing is, once you have changed your way of thinking and accepted this new reality. When they achieve, what were menial things before, such as sitting up, standing up for a second or two, or not having a seizure for a full day, or speaking even. You will be overwhelmed. The happiness and joy that will bring will be worth so much more to you than them winning the egg and spoon race on their first sports day.
You are allowed to ‘google’ it, just not straight away.
I regret the first night of being told our son was disabled at six weeks old, googling the syndrome’s name, a video came up that was shocking for me to watch.
It was a traumatic day, we hadn’t had time to digest the news we had just received, and I watched the video of this sweet boy, aged 5ish, as he was trying to crawl to the strumming of a guitar. It helped him coordinate his movements to the beat.
This video was a shock because it showed this boy struggling so much, and I didn’t think I could cope with having a child who needed that much help. The fact is that our son is a lot more complex and disabled than that boy in the video, and it goes to show that googling straight away, no matter what kind of illness or disability, is not a good idea. I was in no place to comprehend our life going forward, and this video shocked me to think much worse things than reality.
Due to the complex nature of disabilities, you do need to google them. To find out exactly what your child’s future will entail, but don’t do it straight away because there will be many things on there that are nowhere near accurate to your own child and once you do, google them. It shows you the worst of everything you can imagine, you won’t be able to forget it, and you may get sidetracked down a path that isn’t beneficial for anyone.
The fighting is just the beginning.
So you have a disabled child, you don’t understand what is wrong exactly or where your future lies, you need all the help you can get, and a medical professional dismisses you, ignores your pleas for help.
You can’t believe it. Your child is obviously in need of something, and you aren’t a doctor. All you want is help from someone who is supposed to know.
I hate to say it, but the general doctor and typical hospital won’t know what to do with your complex child or situation as they like to call it. This is where the fighting begins. And you cannot sit around on your laurels waiting for someone to call you up and say, “great news, I’ve found a carer for you, plus I’ve found the financial support you need. And I’ve found the best doctor in the country for your child. I’ve also found all the medication they will need for the next five years. And I can tell you exactly how long your child will live for and that they will have a fruitful life.”
It is such a shame that the whole system is flawed, and I know there are charities out there who do help with this kind of thing, usually set up by someone who has gone through the exact same thing you are going through. But like all things, they might not work for you and they usually only help in a particular area of what you need.
You have to be proactive in fighting for what your child needs. A simple quote we use is.
‘They will always fix the squeaky wheel first’.
Therefore you have to be vocal in what you want and what yours or any child deserves.
As an introvert who hates raising my hand or challenging what has been said to me, I joke with my wife that if it were only me looking after our son, he would still be undiagnosed, and I’d be pretending he was ‘normal’, seven years down the line.
If I am constantly questioning myself, then I know I am doing the right thing.
It is a harsh old world out there for a disabled child and their family. The struggles you will go through personally, as a family and with your partner are second to none.
You are different, special, and you have to accept that the looks you get will hurt you, but I promise you do get used to them, they are never nice, but you learn to shake off the negativity and embrace the good people in this world.
And there is a lot of good out there, and it will, in turn, make you a better person. There will be trials and tribulations along the way, but you will get there.
The balance of supporting other siblings and family members is tough, and you are always questioning yourself, whether you are doing the right thing. Which is a good thing as you a striving to do better, and on those down days where nothing seems to be improving or reaching an end, keep your head up and know you are doing your best and your heart and head are in the right place.
“Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day. You shall begin it serenely and with too high a spirit to be encumbered with your old nonsense.” — Ralph Waldo Emerson
This post was previously published on Medium.
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