Confessions of a special needs parent should be made once in a while and today is guest blogger Mark Arnold’s day to tell all. How many of these are true of you, too?
Parents of children with special needs experience many highs and lows along their parenting journey, but what are the secrets? What never gets mentioned, what never gets talked about, what are the confessions of a special needs parent? Well, it’s time to shine a light on the secrets, time to say to other special needs parents “Yep, if this is you too then you’re not alone.” Here are a few of mine…
We never saw it coming. Never in a million years did we expect to have a disabled child. A normal full-term pregnancy had been followed by a slightly difficult birth. But when James hit 2 and wasn’t talking or responding to his name, wasn’t giving us eye contact, was in his own private bubble, our worries strengthened into fears. A few months later we received the news that James is autistic with complex learning difficulties. We had no idea what that meant and were cut loose to figure it out for ourselves. We never saw it coming and were in total shock.
I grieved for the lost future I had imagined for my child. We all have dreams for our children. When a child is diagnosed with special/additional needs or a disability, those dreams are shattered. They might be selfish dreams, but we don’t have time to process that they are lost. They are snatched away in the time it takes for someone to deliver a diagnosis to us.
The loss of those dreams for James were hard to bear. The unknown of what the future held meant new dreams were impossible. We were dreamless, grieving, hurting. Yes, it was selfish. Yes, it was wrong to think that James without those dreams was somehow less. But in the rawness and pain we experienced, with nobody to inform and encourage us, it is easy to see how it happened.
I prayed for my child to be “healed.” Of course I did…I beat on heavens gates to make God hear me.
“Why my child?”
“Please, take this away from him!”
“Why our family?”
“Please, let this not be true!”
And in my deepest, darkest moments…
“Why do I have a disabled child?”
Judge me if you like, but most if not all special needs parents have been in that dark place.
Do I pray these prayers now? Of course not. I know more now, I understand James much better now. I celebrate his neuro-diversity instead of fearing it, I pray for James to have the future God has planned for him, not the one I might once have wanted for him. The future’s bright, just a little different.
Confession is good for the soul. There is something liberating about sharing these thoughts. It is sobering to reflect on where we once were, but encouraging to recognize where we are now, where James is now.
For special needs parents in that dark place, perhaps our journey can encourage and help you hope for a better tomorrow. Our secrets are out, but if more special needs parents share them, perhaps they won’t be so secret after all!
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 Networ. 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: firstname.lastname@example.org or @Mark_J_Arnold.
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