Parents of Children with Special Needs

Saturday 26th March 2016 - Presentation Primary School

Seven Reasons Why Special Needs Parents Need to Vent

The Huffington Post UK: 23/03/2016

Have you ever had one of those days that starts badly and progressively gets worse? Nothing car crash dreadful, but a multitude of frustrating little incidences that make you want to scream, swig wine, and snort up cheese cake all at the same time.

It could have been the heady combination of the baby not sleeping and the toddler ramping up the tantrums. Or simple mundane things like missing the train to work; an unexpected bill; shrinking your favorite jeans in the dryer; or a bug-ridden child.

At times like this you might reach for the phone to have a moan to your mum or text your vexations to your best mate. Or you could even save them all up for your significant other - firing out your disgruntlement before they have even got in the door.

We all do it. Venting is just one way of relieving the build-up of stress. You could say it is good for us to let off steam from time to time. It is like the golden unspoken rule of relationships.

I'll listen to your vent if you listen to mine.

But what happens when the vent pact is top-heavy?

When you parent a child with additional needs it comes with a unique set of daily difficulties and aggravations. These have a habit of piling up all too quickly and the urge to vent can be strong. We might hold back though, not just for fear of alienating all and sundry, but mostly because spewing out our emotions often makes us feel even worse.

So we let it build and build until the vent becomes a volcano and God help anyone in the volcanic plains.

Here are seven reasons why it is important that special needs parents learn to open up more.

Sometimes we get frightened
The fear. It is not something we parents of children with extra needs like to talk about in everyday conversation. It's not like we can say: "Nice shoes. By the way I worry about my child dying suddenly ever such a lot" or "what did you have for tea last night? I was awake all night obsessing about the state of adult disability services and who will protect my boy if I should ever die" (I can't by the way. Die that is. Ever).

No. Death talk is not really a crowd-pleaser. So where do you go with that? Because really, in one guise or another, this fear is ever-present like a morbid mate. It is mostly nestled calmly within us, but it doesn't take much to make it bubble over. Then our other friend panic arrives. Then the party properly gets started.

Sometimes we get overwhelmed
Often there is so much to do, that nothing gets done. We freeze. You can start the day with a list the length of your arm - from re-ordering some prescription meds to chasing services - and you can end the day with the other arm getting in on the length-of-the-list action. Then pesky things like actual real life pay-the-bills work or looking after children gets in the way. It can only take a few hospital or therapy appointments nudged into the week before you feel like you are drowning.

Sometimes we get jealous
It does depend on where you are in your journey to how jealous you get. In the early days I was insanely jealous of everyone with what I deemed a "normal" life. Envy long left the building, but the pang will get me now and again. And it is usually petty, ridiculous things. Things I would be too ashamed to admit to in this post.

Sometimes we get tired
If it is not physical tiredness, it can be emotional tiredness. The day-to-day demands of caring for someone who has complex needs can be tough. Raising any child is tiring, but a Peter Pan baby who will never grow up is relentless hard work. Rewarding, but relentless nonetheless.

Sometimes we get sad
As my child gets older I am finding myself in more and more situations where I feel uncomfortable. I know it is human nature to look again at a scene that is not the norm, but those second glances can be awkward or painful depending on my mood. Then there is the daily reminders of a different life: standing in the rain blowing raspberries at the window of a school bus; washing skinny fragile ribs in the bath; trying to calm a yelling child when they can't tell you what they need; writing down calories; researching "amazing, ground-breaking" therapies that cost more than my house; sending the siblings to support groups. All of these things can often leave you reeling.

Sometimes we get bored
It can be very monotonous looking after a child with special needs. Sorry darlings, we love you and you have brought colour to our world, but... as lovely as it is to stop and smell the flowers, sometimes we just want to make it to the shop before it shuts. Life in slow motion can be exceptionally tedious. We still have to spoon feed our 5 year old every meal and it can take an age. He feeds better whilst transfixed by In the Night Garden and I used to daydream as a distraction, but then I ran out of imaginary date scenarios with Tom Hardy. Now I watch Netflix on the laptop with the head phones in. Please, please, please don't tell speech and language therapy though - I am supposed to use mealtimes for meaningful interaction. Take that confession to the grave (see blooming death talk again).

Sometimes we just want to join in
We would like to go out more and have fun - with friends, family, partners, some randoms off Facebook (joke - love my new Facey mates!). But often the fun comes with a price. If our child is included, we have to take his ability to sensory overload into consideration. If it is an adults-only affair (hurrah), the overdraft on energy banks from the late night (and inevitable hangover) has to be weighed up carefully. There is not much sleep in reserve so depleting the coffers leaves us all scrabbling around for change all week. Then it can have a domino effect - knocking us all off course. Everyone suffers.

Sometimes we are awesome
All of the new friends I have met, who have children with special needs, bring so many, many extra gifts to the table that the venting is all part of the charm. All of the above makes them more empathetic, kinder and compassionate. And when they let their hair down, they do it in style. So I would go out on a limb and say that being friends with a special needs parent would be very much worth it.

That said it takes an extraordinary sort of person to put up with us. So, on behalf of us all I'd like to say thank you to all the marvellous mates and family members. We really, really do appreciate you sticking by us. For seeing we are still here amid the stress and mess. And most importantly for not giving up on us.

Thank you for listening (AGAIN)

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