Learning Disability Week – our own superheroes

Mencap have launched Learning Disability week to raise awareness across the UK.

This year Mencap are celebrating families and recognising the hard work they do to support their loved ones.  Their theme is "Who is your Superhero?" and this has caused hours of conversation here at SNJ.

We came up with several people whom we admire and are inspired by, but no one felt quite right. This was because we both kept coming back to the same answer in our heads, but it just felt a bit sappy to say it out loud, being the bad ass gals that we are.

Who is that person, we hear you cry? Well, and we make no apologies, that person - those two people - are our husbands.

Debs:    I met Chris and within 18 months we were married.  I could be me with Chris - warts and all - and he was still happy.  Then Chaos in Kent arrived.  Within 10 months we were parents to K and 2 years and 4 days after our wedding the twins arrived and somehow we were parents to three children.  The next few years were chaotic to say the least - premature births, hydrocephalus, Visual Impairment, ASD, SLCN, Dyspraxia and a number of other labels were hurdles we had to face.  We had to sit outside operating theatres, sit beside incubators, learn a new language and system and somehow find time to just be mummy and daddy.  We also had to remember to be Chris and Debs - which as any parents will know is not easy - but somehow we did this and managed to stay together and more importantly, we also still smile and laugh together.

chris collageHe is a really hands-on Dad who has never once shown any disappointment or shame in having kids with disabilities. As far as he is concerned, we have the three most amazing children ever!  He calls them his "hat trick".  He is the Dad who bores his friends with Youtube clips of the kids; he is the Dad who forgets that one of our children is blind and then tries to keep a straight face as J tells him off for walking him into an obstacle. He is the Dad who is more excited than the kids at the Cadbury's outlet store and the Dad who has had to learn to share his beloved PS3 and PS Vita.  He is also the Dad who will do the appointments if I need a break.  When J was younger, he wore artificial shells in his eyes.  Having them fitted and measured was just too much for me at the time so Chris took time off work and these appointments became Dad & J time.  There was no sacrificing sighs or comments, he just knew that this was what I needed.

I write blogs, speak at conferences, support friends who run support groups, coach colleagues and I also run a parent carer forum - most of this on a voluntary basis.  I also provide training across the SE and in addition to all of this, I am a mum and wife!  I hate saying no to anything and I am an "ideas" person so often find myself sat at midnight on my laptop researching a new project or trying to keep all the balls up in the air.

Chris just supports me.  He listens to me rant about politics and personalities, he listens to me rave about a yet another new idea I've had, he even took to twitter so he could share my work.  He drives 40-50 miles to work each way every day and often, has to start making dinner when he gets home because I have been so full on with the kids or work that I've not got round to it.  He is the dog walker, the toy fixer, the go-to video game man, the bacon sandwich weekend man and he also cooks a mean roast dinner.  The kids adore him and watch for his van to pull up at night because they know there will be tickles, teasing, throwing into pools and all the other things they love.

Now, don't get me wrong, before any women out there start thinking I am married to a saint, let me assure you that Chris is a total bloke - he worships Liverpool FC, drives a white van, can sleep through the loudest noises, doesn't know how to put clothes in the washing basket and I have to "remind" him when certain tasks need doing (I say "remind", he says "nag").  He is however, a totally supportive husband, a much-loved and adored fun Dad - so yes, he's my Superhero.

Tania:

Marco and I have been married for 16 years next month. It was not a long courtship. We got together on a Sunday, He gave me keys the following Tuesday, I moved in to his flat in Clapham the next week. Two months later we were expecting Son1, Two months after that we were engaged and five months later, we were married. I have never, in all that time, doubted that I married the right person.

m&tLike many parents of kids with Aspergers, realising your child is different is a gradual process and he has been at my side every step of the way.

Although we were 29 when we met, we were still kids and we've grown up together having plunged head-first into parenting. Sceptics thought we'd never last, especially with my somewhat flighty track record.

The two of us with a new baby that neither was really prepared for was like watching a TV comedy, me the 'glamorous' TV newsreader, him the handsome, witty.. er.. accountant. Both of us clueless. Especially because Son1 was not your average babe who defied the parenting manuals. Defiance is his middle name.

Son1 would lie between us and repeatedly raise his legs in the air and bang them down on the mattress in the middle of the night. He'll get fed up in a minute, we thought. He did not. Marco had to hold Son1's legs down to stop him - and that kid was strong, even at four months old. This was not in the handbook.

Sleepless, Son1's eyes would glint scarily in the light of the street lamp outside our flat; it was a sure sign of things to come.

We made it through those long, difficult years of discovering that our boys had additional needs, diagnoses, relentless fainting attacks by Son2, screaming meltdowns from Son1, finding schooling solutions, making adjustments, applying for statements,  even moving home to facilitate all this.

I was bad-tempered, anxious, exhausted, often ill (which we now know is Ehlers Danlos), irritable when under stress, which was most of the time.

And Marco? He was patient, understanding, loving, constantly helping me, even coming home from work because something had happened that I couldn't cope with.

Now, when the boys are older, instead of things getting easier, the opposite has happened because of my illness. His life has got harder, taking on the lion's share of driving the boys around, cooking, tidying, learning a new role of pushing me in a wheelchair, which is hard for both of us to come to terms with.

I meanwhile, am reduced to hobbling around, frequently sleeping for hours, constantly popping strong pain meds, doing what I can, which isn't much.

This is not what we were expecting, but he has handled it in the way he handles everything; calmly, with good humour, wit, and charm. He was once named in his junior school class as the person most would like to be friends with and it's easy to see why.

Every parent of kids with additional needs will understand when I say that my youthful dreams of an exciting, adventurous life have long since been replaced by wishes of a calm existence. It's enough of a roller coaster ride living with your children.

My husband is my own superhero and source of calm; the perfect foil to my Type-A-ness that brings me ambition but also trouble if I drift too far away. He is the touchstone that I need to remind me that just being alive and together is sometimes enough success for one day.

Debs Aspland
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Debs Aspland

Exec Director at Bringing Us Together
Mum of 3, wife of 1, Exec Director of Bringing Us Together, Owner of Inspiring Circles, Writer of Chaos in Kent, Development - South at Community Circles
Debs Aspland
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