Special Needs Parenting, An Emotional Response

06/10/2016 17:09

I am a literary snob and have always hated greeting cards poems. Unfortunately what your midwife fails to tell you is that when you become a mother, they replace the rational part of your brain with mush.

Having spent my pre-special needs motherhood opening trite birthday cards, reading the previously despised verses holding them to my tender bosom, while sobbing "so true". If these emotions run riot when you have a "typical" child all I can say to you Extra Special Parents embarking on this journey is

if you have tears prepare to shed them now

Silent Howler II Laura Ford.Image authors own.

Three years into our journey, during a very low period which characteristically involved a fight with the authorities to give our daughter equality of opportunity with her peers, you find me, sitting quietly on the sofa, having put down the phone on the latest argument. Shaking slightly and near to tears I hear an awful raw keening sound. This sounds like an animal, caught in a trap, in pain, who had given up hope of rescue. As I begin to rock gently I realise the noise is me. I have honestly never heard a sound like it and as I sit, completely and horribly in the moment, I take apart every single fight, and pain, and triumph and struggle that my precious small girl and I had endured. Clearly I had been fighting for her so hard, and working so tirelessly to remain positive that I had squashed all this excruciating emotion down, down, down and there it all suddenly was.

As experiences go this is most definitely not one I would recommend- why share it with you? I have experienced emotions while embracing our new normal (or as a friend and I always say "living the dream") which are dark, disturbing and hard to admit to. If on your parenting journey you have experienced some of these, please know you are not alone.

Pearl was our 'extra'. The Mr. always wanted a huge family, but then to be fair he doesn't have to give birth. We had fun practicing making Pearl, but after a year nothing had happened and a more permanent job prospect was looming. I was just about to suggest we stopped trying and I went back to work when I fell pregnant.

Pearl arrived. It became clear she was entirely herself. Along with fear and panic, I had questions.

Why did we have her? We had two children already, I could have worked-what were we thinking?

Was this my destiny? Would Pearl be healed? Did God mean this to happen? Were we being taught something? Was there a God, or was everything totally random?

I was embarrassed. Embarrassed to have 'failed' by giving birth to something that wasn't 'perfect'.

I worried about the future. What would people say? How would they treat Pearl? Would she talk, walk, feed herself, be toilet trained?

I was uncomfortable, I did not want to be a Special Needs mum. I wasn't the type. I was the helper, not the helped.

I was regularly hit by waves of despair so intense I felt they would surely wash me away.

Mainly I felt guilty, guilty for feeling all these feelings. Guilty for making this child who was finding the simplest things so difficult, and guilty for changing the family dynamic so dramatically (oh how I underestimated my wonderful family)

I was completely awash with emotion.

Nobody asked the Mr. and myself how we were feeling.

No professionals checked, they were too busy diagnosing.

No friends asked, perhaps worried they wouldn't cope with the answer.

Several people told us how we felt.

"What a good job you're a Speech Therapist, you'll know what to do'

"God only gives special children to special people."

An older woman of my acquaintance said "But you don't regret having her do you?" Never, NEVER ask a parent struggling in the early days with therapists, appointments, tests, NEVER ask them this question. You don't want to know the answer and actually neither do they.

"I expect you're grieving the child you didn't have?" No actually, I was grieving the difficulties my beautiful beloved Pearl was facing to do the simplest of things, and the amount of horrid appointments and needles and knives she was facing.

You discover me overwhelmed by feelings of every kind, bombarded by the opinions of the well meaning, and exhausted by sleepless nights and fights with the authorities. Unable to share these emotions with my amazing best friend/husband/partner in crime- they were too dark and dreadful- and fighting smilingly on. And that is how I came to find a keening animal inside me, and that is when I realised that I had to be honest, with myself at least, about the trials of those dark days.

With the benefit of nearly a decade's hindsight, I can tell you these feelings come and go. Some disappear altogether to be replaced by something else. Life becomes more usual, and positive happy feelings come creeping back. From time to time, a form you fill in, or a look someone gives you, or another family sadness will surprise you into re-experiencing them all again. When this happens people I have some advice. Don't listen to the people who think you should have gotten over all that by now. Don't try to do too much. Be kind to yourself. Remember, coffee, cake, wine, chocolate, comedy. Whatever it takes. Pick yourself up dust yourself off and ... well you know the rest.

When Pearl and I are curled upon my bed at story time, or on the sofa with a biscuit; I often say "shall I tell you a story about you?" This child has the highest level of self esteem in the whole family. Of course she wants to hear this story-who wouldn't?

Once upon a time there was a Mummy, a Daddy, a sister and a brother. Daddy looked around and said -"I just don't think our family is finished yet" and then Mummy found out there was a baby growing in her tummy. One day Mummy said - I think this baby is going to be born, and what do you think happened next? Pearl was born and she was so beautiful, and we looked at her and we knew our family was complete. Pearl was what we had all been waiting for.

And dear reader, we lived emotionally ever after.

Originally published as On a Scale of One to Ten on

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