pride in the job

Dave, a dadzclub dad, shares his story of bringing up a child with a disability. Thank you Dave.

Hi guys! Isn’t it great that we Dads have a site to meet and chew the fat? I’ve blogged about Fatherhood and being a Dad to a disabled son for 6 years now and most of the people I chat to are Mums. So it’ll be nice to see what the Dads have to say!

I should warn you that I think being a Dad is not something you do lightly. The more you put in, the more you get out. I’m an active Dad and encourage others to be the same. It doesn’t just happen.

I have 4 children: 12, 10, 5 and 3 and have miraculously maintained a marriage for almost 14 years. (She’s very patient.) The house is full of noise and fun and arguments and laundry and I love it.

Ashley, my son, came into the world with more challenges than most. The early days were filled with hospital appointments, scans, tests, waiting rooms and hours on the road.

He has a malformed brain (Septo-Optic Dysplasia) which affects his vision (Nystagmus) and his development. He’s still in nappies (yes I do change them!) and has seizures. He comes across as a big two year old.

He has a sparkling personality and has just started to walk with a frame. There’s a posse of women who dote on the little guy and they love him in school.

coping with disability son

We chose to put him in a mainstream school and it has paid dividends with him developing a lot. However, it may soon be time for him to go into Special School as the gap between him and the others gets bigger.

He is Statemented and has a full time carer in school who is a marvel. The graft that woman puts in to help him is stunning. Hours of physio, nappy changes and the patience of a saint.

She’s a good’n but it’s common (I’m told) to get a feeling of your child being taken away from you by the “system”.  When he was a baby we attended appointments in 4 different hospitals several times a week, some were cancelled without notice, some were in the same building but on different days. We were exhausted all the time especially when he didn’t sleep for 18 months!

Then, after one giant seizure he settled into a regular sleep pattern and the mists lifted. We decided to take the matter in hand and began to negotiate the appointments down to one a week or moved two to the same day. We got wise.

There was also rising feeling of despair as I realised that this something I can’t just fix. There isn’t a tool or a gadget that will sort things out. All of this has to be balanced with home life (ie my three daughters) and work. For months it was like a monstrous juggling act. Chaos and angst on a Big Scale!

One thing that helped me focus was the idea of “Pride in the Job” and how it is  something which definitely applies to Fatherhood. Not just with having a disabled child, though this has made both of us more aware of what we do. You and I know that the success of any job you go into depends on your attitude and how willing you are to graft. If you’re a “coaster” you might keep the job but long term you’ll get bored and get nowhere with it. The same applies, IMO, to being a Dad.

With my lad’s condition we were forced to learn things. Not just about his condition but how to use the Medical World and the Social Support World.

It’s not much of a leap to apply this to Fatherhood in general. You can coast it, letting “the wife” take the flack, claiming you’re knackered from a day’s work. You might keep the marriage and the kids but long term you’ll get bored and get nowhere with it.

It’s really important for me to add here that I know how much I have to learn. Even if you have older kids, you don’t know it all and you haven’t seen it all. Every child presents different challenges and you have to be open to that. Even if you have the same problem with a different child you cannot assume old tricks work.

The benefit of all this is a bunch of people who you love dearly all developing and turning into adults you actually like rather than people you happen to be related to.

I’m really looking forward to sharing what I can on here and hope you guys can give me some ideas too.

Dave (dderbydave on t’internet - twitter)

derbydave

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  • 2 comments

    We value your opinion. Here are some of our readers thoughts on this item.

    • Ellen S.
    • Thursday 18 August 2011 8:28 PM
    • This was totally inspirational. You are a wise, wise man—I am going to be thinking about "pride in the job." Love that photo of Ashley!

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