I was used to Harry calling me ‘Mumma’ in public.  He didn’t have many words and while ‘Daddy’ might very well be the most magical word in the world to any Father, I knew I had to wait.  It was only a matter of time anyway.  

Only time passed and there was still no ‘Daddy’.  Harry was nearly 4 years old now, his vocabulary was still very limited and we sensed there was something going on with him.  In fact, we had sensed it much earlier.  But it had taken over a year for Harry’s file to work its way through an under-resourced and overworked medical system.  When we finally did get an appointment at the hospital, to see an ENT specialist, they completed the usual barrage of tests (i.e. hearing) and said there was nothing physically preventing him from talking more.  So we should see the local Government funded SLP.  And we waited again.  

If I recall correctly, Harry initially got 30 minutes of SLP time every 3 weeks.  It wasn’t much, so we arranged for private sessions too.  Yet Harry’s speech didn’t really improve.  There was talk of a ‘tongue tie’ and how we could drive for 3 hours to see a dentist who would ‘snip’ the tongue tie for $10.  And of course, there was the constant well-intentioned yet often infuriating advice from others, who regaled us with tales of a how their child (or someone they knew) didn’t speak for 4 years, before waking up one day with the ability to recite Shakespeare and enunciate like a stage-trained actor.  That’s not completely true, of course.  But it is what it felt like.  

Eventually, Harry was diagnosed with severe Apraxia.  I remember doing the usual man thing and saying ‘right, let’s get on and sort it now then’.  Or words to that effect.  But I also remember a moment on my own, sitting on the edge of the bed, being rather angry, possibly shedding a tear (shh – don’t tell anyone) and thinking about how Harry will be bullied and might struggle to make friends.  How he’ll be marked as different.  How his life won’t be easy.  I remembered how merciless children can be and how, with his curly blonde hair and thick glasses, Harry is going to stand out and how…..

This continued for a few moments.  Then it stopped and I resolved that Harry would have an ordinary life, just like everyone else.  From that moment on, there was no doubt in my mind that Harry would find his words.  

It wasn’t going to be easy though.  For a start, the ‘official advice’ we received was to check out the website for an organisation called ‘Apraxia Kids’.  That’s right – the Ministry of Health for New Zealand didn’t have any of their own resources and pointed us to a US based charity instead.  We’re glad they did. 

It was our research on the Apraxia Kids website that really informed our decisions from that point on.  We learned of the need for more intensive speech therapy and our research made us question the therapy Harry was receiving.  We sought out a private SLP who was trained in Apraxia and was lucky enough to find Erin, a Canadian SLP who had moved to rural New Zealand, and Harry started visiting Erin three times a week.  To the best of our knowledge, Erin is the only SLP in the lower South Island with experience in treating Apraxia. 

It’s now been two years since Harry received his diagnosis.  That time has passed quickly and taught more than a few lessons, some of which are specific to being a Dad of an Apraxia Star.  There are times when you feel pretty useless and question if you are doing enough.  You might work long hours and the amount of time you get to ‘do words’ at home with your child is limited.  So you feel that if your son or daughter doesn’t improve, then it’s your fault.  Your wife is doing nearly everything and you’re the one failing your child. 

There’ll be conversations with friends.  Your wife will explain Apraxia and other friends’ wives will empathise.  You’ll feel as if you’re on the sidelines and marginalised.  And you’ll feel like you’re failing your child.

You might have a conversation with your buddies but don’t be surprised if they don’t fully understand what Apraxia is.  And do be surprised if you don’t get much more than the ‘right – best get on and sort it now then’ comment you yourself uttered months earlier.  So you might feel isolated.  And like you’re failing your child.  

Only you’re not.  Nothing could be further from the truth.  Apraxia Stars need a team behind them.  That team includes both parents, family members, SLP’s and organisations like Apraxia Kids.  Working late to pay for therapy is no less important than ‘doing words’ in the evening.  You’ll be doing enough, in a million different ways, even if you don’t think so.  

As for Harry and my wish for him to have a normal life?  I was wrong.  Harry isn’t going to have a normal life.  

That’s because he can have an extraordinary life.  Harry can do whatever he wants – he can be an astronaut, work on a cure for cancer, or maybe even be a footballer for Manchester United (I’d like that).  Heck, he might even stand on stage and recite Shakespeare.  

Life as a Dad of an Apraxia Star can feel isolating and frustrating at times, and us blokes ain’t great at voicing our support for each other.  Yes, we might struggle to find our words too.  But if you’re reading this then you’re obviously committed to doing the best for your child.  You’re doing great and deserve a big ole slap on the back (you know – man style, we don’t do hugs – right?).

Anyway, keep up the great work, Dads.  You’re amazing.  

Footnote: There’s a Dad’s only session at the Apraxia Kids National Conference.  If you get the opportunity, I highly recommend attending.