Parenting in my shoes – My child has dyspraxia

Benny is a father of two who lives in Waterford and is married to his childhood sweetheart – or long suffering wife as he likes to call her. He has an 8 year old son, who loves technology but not football, and a 2 year daughter who is a Paw Patrol fanatic and is the boss of the house (those of us with toddlers can definitely relate!)

Benny is a stay at home dad and his son has dyspraxia DCD. He spoke to me about life as a stay-at-home dad and what having a child with dyspraxia means for his family.

 

Why I became a stay at home dad

My wife was returning to work after Maternity and a year off to concentrate on studies (but how she studied while being at home I’ll never know). We were right in the midst of making arrangements with crèches and after school, who’d could collect who etc when I dropped the bombshell… “What if I stayed at home?” After the initial shock of my idea we sat down and worked out the figures. Between the tax saving of only having one income, not having to pay for childcare and some tightening of our belts we decided that it could be done. We reckoned it would give us a better quality of life and this was the main thinking behind it.

 

The reactions from other men – and women

Most people are great. Most women have a ‘good for you’ attitude to it. Most men are like “huh, huh, you’re retired then!” But it’s all in jest. I say ‘most’ because there are people who don’t seem to grasp it, yup, you guessed it ‘the elder generation’. The ones who grew up with defined roles of ‘male breadwinner’ and ‘female home keeper’ but this attitude is dying out, literally. Us younger folk are fairly on the ball.

 

The best and the eh “most challenging” parts of being a stay at home dad

The best is easy, being with the kids. When I was an auctioneer I worked long hours (there was no ‘off’, my phone was constantly going outside of hours), I used to see them for a few minutes in the morning and come home stressed to land on top of the bedtime routine. It just wasn’t working for me. Now I get to watch them grow and develop and be much more involved in their lives.

The most challenging aspect, ya ready for this? Being constantly with the kids. There’s no ‘off’ as a stay at home parent either. No sick days. No going to the toilet alone for God’s sake!! But you know what, I’m delighted I made the decision. Plus it’s allowed me to start up daddypoppins.com and write both comedy and serious pieces for various newspapers and websites. I’ve always wanted to write and being a stay at home dad gives me the best of both worlds.

 

How we discovered our son had dyspraxia.

 We knew there was issues at school but their description of our little man and how we found him to be at home were very different. He gotten on great in crèche and Montessori and they thought he’d fly at school but he just never settled. He became anxious and socially awkward and the happy boy we knew retreated into himself. As time went by he became worse and worse as we explored every avenue to help him. Unfortunately the Irish system has waiting lists of up to 2 years for assessment. In fact at the time of writing this we are still waiting. We have paid to go privately (as early intervention is key), he’s been diagnosed with Dyspraxia DCD and sensory processing disorder, we’ve had 2 separate blocks of occupational therapy and still nothing. You have to be wealthy in this country to be seen (something we aren’t, but we’re struggling in to help our kids in any way we can)

In the end it was actually a relief, for us and him. We knew what was going on and put a plan in place to try make things as easy as possible for him.

 

Dyspraxia is…

That’s the issue, it’s very difficult to describe. There’s no one sentence that sums it all up. It’s different for everyone affected by it. To me, it’s a brain-based developmental condition that makes it hard to plan and coordinate physical movement (both fine and gross motor skills are affected). Dyspraxia isn’t a sign of muscle weakness or of low intelligence, in fact the Little Man is super smart. Some children with dyspraxia struggle with balance and posture. They may appear clumsy or “out of sync” with their environment. Our little man struggles with writing, organisation, emotions, breaks from routine etc. our little girl is the same, there’s definitely something happening there too but at 2 and 1/2 she’s too young to diagnose.

 

The difficulties dyspraxia presents for our son – and for us.

The Little man is 8 and like all 8 year olds there’s worries to be had. How much of it is down to dyspraxia and how much of it is down to him being our first kid is up for a bit of debate. You’d never really know without a control subject. Why don’t they come with manuals?

Dyspraxia has made our life hectic and full of worries about how he’ll cope with situations. It’s made me much more of a ‘helicopter parent’ than I ever thought I’d be. Everything has to be done in a specific way or there’ll be meltdowns; from laying out of clothes in a specific order for the morning and checking upon every detail as we work our way through the daily routine. It’s exhausting. He isn’t able to do what other 8 year olds can, everything needs parental supervision.

 

Finding support

We’ve created our own support system because there’s been a total lack of support from the state. We are still waiting on public assessment. If we hadn’t gone private (much to the detriment of our finances) then I’m not sure where we’d be. The little man’s mental health and emotional wellbeing were deteriorating at an alarming rate.

It’s another reason I’m delighted I made the decision to become a stay at home dad as I know my sons routine and needs. Both myself and my amazing wife are his home support. The wonderful Hannah in Sunflower Clinic is his support and I’m glad to say that since her report the school have rolled in behind us and life has been made much easier.

I’ve become immersed in dyspraxia since the diagnosis. I attended a local meeting one night (hastily arranged by a small group of concerned parents) and it snowballed from there. It was only then that I realised how many people are affected by it. So many people don’t know a thing about it. It’s pretty invisible as a special need and has gone unnoticed in so many people in the past. Did you know that 1 in 20 people has it? I know of 7 kids in my estate of around 60 houses that have Dyspraxia DCD (to give it is full title). This meeting has spawned a group of concerned parents (all in the same boat as me) and has grown and grown and we hope to have club formed by September of this year that will provide an outlet for kids and parents going through everything that dyspraxia brings (from the initial worry, to diagnosis and acceptance, planning, engaging, techniques and tricks and the support and friendship of someone who understands your situation).

Because Dyspraxia isn’t ‘obvious’ to the naked eye it’s often dismissed or ‘tutted at’ by others and assumed to be ‘bad parenting’ or an ‘unruly or emotional child’ or something to that effect. It’s not. They don’t grow out of it. It needs to be recognized like autism or dyslexia. It’s currently being pushed to the side by our health services as regards funding.

I’m delighted to say that I’ve become the public relations officer for the Waterford Dyspraxia DCD Support group (link to page here) and currently run both their public and private Facebook pages. So I’m part of the support, but it’s a huge group effort, we have a board of 16 (who all have different skill sets, from; barristers, insurance professionals, special needs assistants and fund raisers) at this point we also have 15 fully trained couches (some of whom are young adults with Dyspraxia). So to answer your question about support, the involved parents are the support, others don’t seem to understand. But we’re working on making them.

 

The biggest challenge.

In a word, worry. What does the future hold for my child? How can we continue with this exhaustive routine. How can we afford to continue treating them privately? Will they ‘fit in’? Will they be able to secure work and look after themselves properly later in life? Will they be happy?

..and the positives

 I’m not sure whether it’s dyspraxia or just my little ones but they are the most caring, in touch with their emotions individuals I’ve ever known. Their empathy levels are off the charts and when they find something they are interested in their concentration and knowledge of the subject is off the charts. Bottom line, they’re still the special little people they were before a label was attached.

 

Advice for other parents in a similar situation

Address it ASAP (and I mean both them and you) it’s a shock but it provides a roadmap to help. You can’t fix a problem if you don’t know the question. The sooner you get to work on things the better the results.

I’d personally say ‘Let them know’ (although some others may not agree) it helped my little man no end to know there was a reason he wasn’t as quick at writing and found some things more difficult than his peers. It changed his attitude from one of ‘I’m useless’ to one of ‘That’s just because of ‘my difficulties’ but now I know how to get around that’.

Finally, get online and find your local support group. People have been there before and can provide a sympathetic ear and advice on who to call or what to do. You aren’t alone. If you can’t find your nearest group then give a call to Harry in Dyspraxia Ireland (link to site here). He’ll set you on the right track.

Benny and his son