Mark Arnold describes life from a dad's perspective as the parent of a child with special needs and from talking with other dads doing the same.

Mark Arnold is Different Dream’s guest blogger this week. Please join us in welcoming Mark as he shares a dad’s perspective of parenting a child with special needs.

A Dad’s Perspective

Yesterday evening, I lay on the bed next to my son for a while. 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 vocalized sounds and I repeated them. He loves this, touching my lips or teeth with his finger as I repeat his repertoire of sounds.

Time slipped by as we repeated this simple activity together, with James 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 for 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 special needs in the work I do; dads who are all at different points on the journey with their children. Some are 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 from what they expected. Some respond by putting all their energy into trying to fix their children, looking for solutions in the same way they might try to repair a car. Others simply love their children for who they are, accepting that things are different, but celebrating the differences and loving them through it all.

One thing that often unites these dads, however, happens when a group of them come together. When this happens, I’ve seen men share 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 and feelings come flowing out. Sharing with other guys 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 children. The tears flow, there are hugs of comfort and understanding. It’s wonderful to see, and often a surprise to their partners when they are reunited afterwards.

Of course, this comes too late for some dads. Dads who for a million reasons couldn’t be a part of the family any longer and have already gone. My heart breaks for what they have lost. I cannot judge them as I don’t know their stories, but my heart goes out to them and to the families that are left behind.

What these dads have taught me is that bottling things up, trying to keep it all together, not talking or sharing about it, doesn’t help. Releasing all of that and then just living in the moment where I’m laying next to James, delighting in being with him, sharing in a simple activity, showing love to each other, that’s what being a dad to a child with special needs is all about. That’s what my son and my family need most from me.

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By Mark Arnold

Mark Arnold is the Additional Needs Ministry Director at Urban Saints, a leading national Christian children’s and youth organization. He is co-founder of the Additional Needs Alliance, a national and international advocate for children and young people with additional (special) needs or disabilities and is passionate about enabling everyone engaging with them to be inspired, trained and well-resourced. Mark is a Churches for All and Living Fully Network partner, a member of the Council for Disabled Children and the European Disability Network. He writes an additional needs column for Premier Youth and Children’s Work (YCW) magazine and blogs at The Additional Needs Blogfather, He is father to James, who has autism spectrum condition, associated learning disability, and epilepsy. To find out more about how Mark’s work can help you, contact him at: marnold@urbansaints.org or @Mark_J_Arnold.

 

2 Comments

  1. Mark Arnold

    Thanks Lillian, really appreciate your encouragement and your own families story. The more we can be open and share how we’re coping (or not!) the more we can help others to do the same.

  2. Lillian Flakes

    Mark thanks for sharing your story and personal perspective. We have a daughter with Down syndrome and in the early months of her life we were in the hospital for many days and I remember my husband sharing time with another dad and it was so eye opening as I listened and realized that my husband processed this very differently from the way I processed. It is so important to allow each other to manage through in the best way they can.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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