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 always gets hidden; what are the confessions of a special needs parent? Well, it’s time for that to change, time 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”. So, here’s a few of mine…
We never saw it coming…
Never, in a million years, did we expect to have a disabled child. Our first child, Phoebe, had developed as expected, hitting or exceeding all of her key developmental markers, crawling, walking and talking on target. We fully anticipated our second child, James, to develop in the same way. A normal full-term pregnancy had been followed by a slightly difficult but generally unalarming birth; all had seemed as expected. Early concerns about James’ development were brushed aside by comments about girls developing faster than boys, it was nothing to worry about. But as time passed, worry we did, and when James hit two 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 of various tests and assessments later, we received the news that James, aged just 2½ years old, was now officially labelled as autistic with complex learning difficulties. We really had no idea what that meant and were generally just cut loose to figure it all out for ourselves… we never saw it coming and we were in total shock.
I grieved for the lost future I had imagined for my child…
We all have dreams for our children; these are usually totally unrealistic and change over time as our children grow up and their skills and talents gradually develop with them. When a child is diagnosed with special/additional needs or a disability, those dreams are shattered in an instant. They might be our dreams, selfish dreams, but we don’t have time to process that they are lost; they are snatched away in the amount of time it takes for someone to deliver a diagnosis to us. I dreamed that James would open the batting for England in an Ashes test match, Lord know we need someone, or be the first person to set foot on the moon since Gene Cernan in 1972, the year an eight-year-old me was asked at school what I wanted to be when I grew up; “Astronaut” I said, without hesitation. I had many years to come to terms with the fact that this would not be a dream I would realise, but seconds to come to terms with the fact that I wouldn’t live that dream out through James either.
The loss of those dreams for James were hard to bear, and the complete unknown of what the future now held meant dreaming new dreams was impossible. We were dreamless, grieving, hurting. Yes, it was selfish. Yes, it was wrong to think that James without those dreams of ours was somehow ‘less’. Wrong to think that an autistic child is in any way second best to any other child. But in the rawness and pain we were experiencing, with nobody around us to help to inform and encourage us, it is easy to see how this could have happened. Do we think this way now? Of course not, we know differently now, but I totally understand parents that are in this place and would never judge them for being where we’ve been.
I prayed for my child to be “healed”…
Yep, this. Of course I did… having received the diagnosis 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 me?” “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. We are looking into a deep, dark tunnel and cannot see any light at the end of it. We have nobody to help us know that it won’t always be like this, that we can still make a wonderful future for our child and ourselves, and even if we did we might not believe them. Yes, it’s selfish, but who among us has never harboured selfish thoughts? These get magnified in times of shock and distress, and not everyone is able to climb out of that pit.
Do I pray these prayers now? Of course not… I know so much more now, I understand James so 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. Again, though, I totally understand parents who are still rattling heavens gates for a ‘cure’ for their child. I for one am not going to judge them, but where I can I will get alongside them and help them to see what we’ve been privileged to see and learn through James. The futures bright, just a little different.
There are two children, the ‘real’ one and the ‘virtual’ one…
There are two James’s… the ‘real’ one that we love, journey through life with, play with, go for trips out to the café with, laugh with, sit and watch TV with… when describing this James, we accentuate the positives, we share his successes, we celebrate his victories…
…and there is the ‘virtual’ or ‘official’ one that has a Social Worker, a SALT (Speech And Language Therapist), several CAMHS (Child and Adolescent Mental Health Service) team, a Learning Development Officer, an Epilepsy Consultant Doctor and Nurse, several school staff, various reference numbers, a mountain of paperwork and a separate bank account for his benefit payments. When describing this James, we have to talk about the hard stuff, the things James can’t do at all, or only with help, the ‘icky’ stuff, his lack of awareness of danger, his struggles to communicate effectively, his meltdowns, his seizures. After filling in yet another 40-page form (and sometimes wishing, more than anything, that on page one there was a box that said “tick here if nothing has changed and then return the form”) we are left emotionally and mentally shredded. We still love the ‘virtual’, ‘official’, James… of course we do, after all there is nothing we’ve said about him that is untrue, these are just different aspects of the same boy, but we do sometimes need the counterpoint of the ‘real’ James to keep us going!
So, here’s a few of my confessions then… they say confession is good for the soul and there is something liberating about sharing these thoughts. It is sobering to reflect on where we once were but encouraging to recognise where we are now, where James is now. Any special needs parents reading this that are in that dark place, perhaps our journey can encourage you too and help you to hope and carry on for a better tomorrow. Our children need us to believe in them, to be there for them, to love them, and to learn from them…
We never saw it coming… but we can help others who are experiencing this today to cope better. We grieved for the lost future we thought we wanted for our child… but we see another, positive, future more clearly now. We prayed for our child to be healed… but now we pray for our eyes to be opened to the future God has for him. We recognise both the ‘real’ and the ‘virtual’ James’s… and love them both.
The secrets are out… but then, as so many special needs parents share them, perhaps they weren’t so secret after all!
10th February 2019
‘Welcome To Holland, Not Italy’
‘Treasure In The Darkness’
Photo: © Author’s own