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A Special Needs Dad’s Perspective

A Special Needs Dad’s Perspective

James’ Autism affects him significantly, he is mostly non-verbal, although he does have a few words including ‘No’, ‘More’, ‘Please’, and rather embarrassingly, ‘Beer’! (a long story for another blog!)

As we lay next to each other, James vocalised sounds and I repeated them…

He loves this, touching my lips or teeth with his finger as I repeat his repertoire of sounds, feeling the vibration of the sound through his finger and then repeating it again.

Time slipped by as we did this simple activity together.

It was wonderful spending this time with James, with him letting me join in with him and him clearly delighting in the son/dad time we were able to spend together.

His beaming face, his raucous belly laugh, his enthusiastic demands for ‘More!’ (thankfully, not ‘Beer!’), love shining from his eyes, all mirrored in me too…I wouldn’t have missed it for the world!

I meet lots of Dads of children with additional needs in the work I do, Dads who are all at different points on the journey with their child.

Some are baffled and bewildered by what is happening to their world, trying to make sense of it all and looking for answers.

Some are in denial, trying to ignore the reality that their child is different to what they expected.

Some respond by putting all their energy into trying to “fix” their child…looking for solutions in the same way that they might try to repair a car.

Others simply love their child for who they are, accepting that things are different, but celebrating the differences and loving through it all, knowing that what their child most needs is their unconditional love.

One thing that often unites these Dads, however, happens when a group of them come together...

When this happens, I’ve seen men sharing their stories in ways that they have never been able to before, especially with their partner.

Once these guys start releasing what’s been stored up in them for so long, while they have often been trying to “keep it all together”, or be “the strong one”, all their emotions, feelings and built up stress come flowing out…

Sharing with other guys who get it, who understand how they feel, who are on the same journey, releases something powerful within them, sometimes allowing guys to grieve for the first time the loss of the future they expected for their child.

The tears flow, there are hugs of comfort and understanding, it’s wonderful to see…and often quite a surprise to their partners when they are reunited afterwards!

Of course this comes too late for some Dads…Dads who have already gone, who for a million reasons couldn’t be a part of the family any longer.

53%* of families claim that having a disabled child causes some/major relationship difficulties or breakups.

My heart breaks for what they have lost; I cannot judge them as I don’t know their stories and I have no right to judge, but my heart goes out to them and to the families that are left behind.

But what the Dads I have met have taught me is that bottling up how I feel about James, trying to keep it all together when it’s hard, not talking or sharing about it, being a stereotypical ‘bloke’ about it all, doesn’t help any of us.

Releasing all of that and then just living in the moment where I’m laid next to James, delighting in being with him, sharing in a simple activity, showing love to each other, unconditional love despite all the hard stuff…that’s what being a Dad to a child with additional needs, or any child come to that, is all about; and that’s what my son and my family need most from me.

I’m already looking forward to this evening!

*Source: Jill’s House

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Mark Arnold

Meet Our Blogger

Mark heads up Urban Saints pioneering additional needs ministry programme and is co-founder of the ‘Additional Needs Alliance’, a learning and support community. He is a ‘Churches for All’ partner, a member of both the ‘Council for Disabled Children’ and the ‘Living Fully Network’, and serves on the executive for ‘Children Matter!’ Most importantly, he is dad to James, a 17-year-old Autistic boy with Learning Difficulties and Epilepsy.

View Mark’s Profile

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