This came from the FIREFLY website. They have an amazing blog.
Firefly is the company who made the Upsee and the GoTo Seat, which Dexter has and we love!
This is written by a Dad, whose world was turned upside down, when his child was diagnosed with a rare genetic disorder.
Though the condition Dexter was diagnosed was different, and we found out much, much sooner... the way we were told is hauntingly familiar, and the rest of the story sounds just like ours.
This is for all the Dads of kids with special needs. xxx
For the first six months of his life my wife and I were blissfully unaware that anything was wrong. He had all the normal tests that babies have and everything was as it should be. Life couldn’t get much better. I was already dreaming of all his future achievements….
Things haven’t panned out as I hoped and dreamt. In-fact they’re just about as far removed as they could be from those early dream filled days.
In September 2010, with our little boy fast approaching his 2nd birthday we attended what we thought was going to be just another in a long line of hospital appointments with our son. This appointment was with a Consultant in Paediatric Genetics and we got the impression we were only there because our Developmental Paediatrician had run out of any other ideas.
What happened that day literally turned our world upside down. The Geneticist, with very little explanation, and in a very matter of fact tone, told us that our son had all the symptoms and characteristics of a child with a rare genetic disorder.
He went on to tell us that there was only a small chance he would ever walk or talk. Indeed there was only a small chance they would ever be able to find out exactly what this disorder was. My wife and I left the hospital in a state of absolute devastation, struggling to comprehend exactly what we had just been told.
Looking back, the journey into the unknown world of special needs started long before that day, but it marked a defining moment in my life. Things will never be the same again for me or my family.
As we approach Father’s Day on 15th June it seems like a good time to share some of the things that make being a special needs Dad, so difficult and so different, but more importantly so special and so rewarding.
1. It’s tough on Dads too!
There’s no point glossing over the obvious. Having a profoundly disabled child is hard; it’s hard on the entire family. Just how hard is difficult convey to anyone who hasn’t been in that position.
It’s widely accepted that special needs parents are acutely affected by stress especially around the time of diagnosis. This stress is often compounded by a sense of grief that results from this loss of one’s initial hopes, dreams and expectations.
The journey can be particularly hard on Dads. We males tend to bottle things up, we’re less likely to share our worries and stress with friends or loved ones. I think it comes more naturally to mums to talk about stuff and get involved in things like special needs support groups while us dads continue to keep our heads down. Pretending instead, that everything is fine so that we can support our family. Added to this is the overwhelming assumption from society that you’re a man, so you’ll be grand. All of these can make it a very isolating journey for a special needs dad.
2. Of course I’d change things if I could
I don’t get people who say they wouldn’t change anything. That doesn’t mean I don’t love my son, I do, more than words can say, but just that I would love to make things better for him.
3. Its easy to get angry and frustrated
I like to think of myself as a fairly relaxed and chilled out kind of person. However, the last few years have tested this part of my personality to the limit at times.
Whether that’s just from the sheer physical and emotional exhaustion of it all or from the massive sense of injustice that hangs over me.
Injustice in the sense of why us – why our child? Injustice at how our society treats disabled people, regardless of how advanced and accepting most of society sees them self. A sense of injustice that I can’t physically be there for my son at all his doctors’ appointments as I’m trying to hold down a job.
I get unbelievably angry with friends and colleagues with healthy children, who, knowing full well what we are going through, continue to complain about how much hard work their kids are or at other times point out how marvellously they are doing or their latest achievement.
Whatever it is, its impossible to not let it get to you at times.
4. Different is our new normal
Nothing prepares you for having a child with special needs, but that’s not an entirely bad thing. I’ve learnt so much in the five years since my son was born, I feel genuinely privileged to be his dad.
Our lives our unrecognisable now to what they were, and indeed they are unrecognisable from that of our friends who had children around the same time as us.
I sometimes feel like I’ve entered a parallel universe, one that lets me view things in an entirely different light. If my son has taught me one thing it’s knowing what is important in life. Different certainly isn’t always a bad thing.
5. You just have to go with the flow
Like most dads, I like to think of myself as the organiser, the leader of the pack!!
On days out, holidays whatever it happens to be I used to have them sorted long in advance so I knew what to expect, what we needed to do and when we had to be somewhere.
That was before, now I’m just glad if we get out of the house. As our son gets older he’s getting better, but for several years his severe sensory processing disorders meant that no matter how well we planned something, it could be over before it began.
It probably sounds like a bit of a contradiction to point 3, but having a child with special needs helps get things in perspective. Now we just take things as they come, if the day goes to plan then brilliant, if not then there’s always another time!
6. It can restore your faith in humanity
No one demonstrates this point more than our youngest son. He was born around the time we received the diagnosis from our geneticist, which in itself was terrifying. We worried that he too would be affected, but thankfully he wasn’t and he’s now doing his bit to restore my faith in human nature.
He has grown up knowing nothing other than his big brother being profoundly disabled. He’s only three, but ever since he’s been able to walk he’s been looking out for his big brother. It’s not anything we’ve done, infact I’d say at first we probably went out of our way to hide our eldest’s problems from him in some misguided attempt at protecting him.
We didn’t have to – as he continues to grow and develop, so does his sense of kindness and love towards his big brother. It’s a beautiful thing to see and sometimes pretty hard to believe. Getting to witness this inbuilt human kindness is something very special and something very few will have the privilege of seeing.
7. The awkward silence (and the screaming inside)
I’m sure every special needs dad has been there more times than they care to remember.
On the rare occasions now, when I venture out on a ‘boys night’ with friends who I’ve known all my life, I dread the small talk. Its almost like everyone is dancing around the subject. But when it does come, I just want to scream.
Friend - ‘How’s he doing?’
Me – ‘Brilliant, in his own wee way…we’re really pleased with how he’s coming on.’
Friend – ‘Oh right, brilliant. So has he started walking and stuff then.’
Me – ‘No, no, we’ve managed to get him to stand for a few seconds without holding him’.
Then it happens, the awkward silence, followed by the dawning realisation on their face that they have absolutely no idea what is going on in my life or what it means to have a disabled child.
Friend ‘Ah, ok that’s good he’s doing well then, my six month old is standing on his own too, another beer then….’
8. It’s not true, you don’t get used to no sleep
I have no idea who came up with this nonsensical idea that parents get used to living with no sleep. I can only guess it was someone who had a child that maybe didn’t sleep that well for the first twelve weeks of their life. Tough as that may be and yes you probably do get by on very little sleep over a short period like that, try doing it over many years, with no end in sight.
Add to that, the fact your child isn’t a 10lb new born that you can carry around in one hand, they are a 2 stone five year old, with low tone meaning they have no way of supporting them self or of taking their own weight when they are up all night screaming in agony with something associated with their condition.
Further still, your child is five, so people in work or elsewhere don’t really go easy on you like they would if they knew you had a new born in the house.
So the next time you see a special needs parent struggling or moaning about being tired, please don’t say something daft like ‘oh yeah we had that when wee x was a baby…’
9. It’s a love like no other
My son has never said a single solitary word to me, neither is he likely to. We will never go to the pub for a pint together, we’ll probably not manage to get to many sporting events together, certainly not in the ways I’d imagined when he was born. But for all this I love him more than life itself, I think I’m probably over protective of him, but I’ll make no apologies for that. He cant speak for himself, so that’s down to me, his mum and his little brother. I’m a dad on a mission and I’ll do everything I can to make sure his life is as good as it can be.
10. I’m one of the lucky ones
Regardless of everything I still think I’m one of the lucky ones. My little boy brings so much joy and love into our lives, and his smile brightens up the darkest moments. I know that in his own wee way he’s happy and for me that’s all that matters.
Taken from the Firefly website (with permission)