Dance Like A Butterfly, Sting Like A Bee

Living with a special needs child is like waking up to Muhammad Ali skipping in my bedroom every morning demanding to indulge in a little light sparring while I get the breakfast ready.

Ali I can handle.

I've had five years special (needs) ops training involving Olympian sprints against traffic (so far I've always won, not that I'm bragging........OK, I'm totally bragging) and wondering if I haven't, in some fabulous genetic glitch, given birth to a greyhound/wildebeest crossbreed cleverly secreted inside the skin of a disarmingly gorgeous autistic boy.

I could take Ali with one arm, while the other is mashing Weetabix and making hot chocolate with the correct Bob the Builder spoon.  

Making hot chocolate has become an exercise of surgical precision and requires the careful selection of  appropriate equipment (see spoon above) while implementing a research-based approach (half hot water, half cold milk) and keeping abreast with latest technological advancements (currently two spoons of chocolate powder is in favour).  It's not a straight-forward task.

It's tricky to find a research-based article on the topic, but I think I may be in a position to write one.

It's not the fifteen rounds of intense, sweaty battle that brings me to my knees.

It's the feckin skipping.

It just doesn't stop.

I can handle the tantrums, the dramas and the histrionics of autism and still get the beds made and the ironing done.  Not a curly Irish hair out of place.

It's the low-grade constant demands of autism, the constant background skip, skip, skip of it that splinters  your soul into a dark place where once there was light.

It invades your sleep and creates a permanent white noise that shadows every aspect of your life.

The need for special needs parents to get selfish is vital for survival.

To a special needs parent, being selfish does not mean jetting away on a spa weekend and a giddy shopping trip with a forgiving credit card. 

It means being able to finish a meal, have a shower or ohmygod make an appointment to see a doctor when you're sick.

So while Ali is stinging butterflies with  dancing bees, or whatever he does when he's not boxing, I am learning to harness those moments to look after myself.

I'm getting better at it too.

I'm one of those lucky creatures who has a great marriage and we allow each other me-time to perform manly triathlon-type things (him) or girlie hair appointment/gym bunny/sleeping type activities (me) free from people who are below voting age.

When the kids are at school we go on coffee dates (going out together at night is more stressful than it's worth) and get to enjoy each other's company away from dirty dishes, laundry and anything with the prefix special needs.  We also laugh our arses off that we're still dating after twenty years.

I'm coping with my depression really well by educating myself and giving it attention.  Depression is not a pretty thing to behold, and I remarked to James (Himself) the other day that the pain of it is very much like labour.  It's messy and agonizing and deeply exhausting, but through it something beautiful and compassionate is achievable.  

Ignoring what your body and soul is telling you is dangerous at the best of times, but is horrifyingly close to  pressing your finger on the self-destruct button when you're a special needs parent.  

Ignore your source of pain at your peril.

Bottom line, if you don't look after yourself, you can't look after your family.

When I was a student nurse we indulged in much snickering over being taught to enable patients to express their sexuality.

Expressing sexuality is not about sex (although in some happy events it can lead to it).

It's about reaching into the deepest, most primal part of yourself and expressing it through your clothes, your hair, your make-up.  

When you express your sexuality you are saying to the world "I am here, and I am worth the effort of looking after myself".  

So while Muhammad Ali is skipping in the background I paint my nails, agonise over mascara and go on coffee dates with my husband. 

Butterflies and bees rest in County Monaghan.

(and if I can't ko Ali I could always bludgeon him to death with a metaphor)

Nail Cutting - The Bridge of Death

There are many bridges to cross as an autie family.

There is the fickle Bridge of  Trying Food That Is Not Pureed, which I'm beginning to believe is a hallucinatory side-effect of surviving on caffeine and raspberry jam.  Every time I think I've found it, it seems to sneakily change it's co-ordinates.  

Damn you, raspberry jam.

There is the difficult-to-locate Bridge of Not Bolting From Your Mother In Public While She Is Wearing Heels.  When I try to cross this bridge I can never tell if it is the wind whistling through the floor boards I hear, or the distant sound of mocking laughter. 

My favourite is the Bridge of Continence, which we crossed with the assistance of dogged tenacity, Sherpa Tenzing and the sale of my soul to Beelzebub.  I burned that one as soon as we crossed it because we are never , ever going back.

 But for Finian, the ultimate Bridge of Death has to be toenail cutting

My son was looking less like a 7 year old boy and more like an untrimmed (but surprisingly handsome) mountain goat.

It was fast approaching that time when I had to muster all the able-bodied males in our house to pin him down while I clipped his blades of glory.

You may have gathered, that Finian is less than co-operative when it comes to personal grooming.

I really wanted to approach the toe-nail shearing armed with something other than staple guns, buffalo sedatives and a cattle crush, so my trusty adviser Google was prayed to for enlightenment.

A quick search  showed that Finian is in excellent company.

What is laughingly referred to as issues with nail trimming, goes together with autism like napalm and warfare.

Many excellent ideas were suggested (sensory distraction, involvement in the process, rewarding), attempted and discarded.

The distraction thing categorically  Did Not Work.

I tried promising him "cut toe nails first, then coke" (just about his favourite thing on earth) and what killed me is that he really tried.  He repeated what I said, he made eye contact and inched his toes towards me...only to snatch them away at the last second.   It was just to awful for him to bear.

Temple Grandin said that even though most of us don't find nail cutting painful, that the autisitc person may perceive it that way.

But short of access to an anaesthetist and some propofol, we had to once again resort to muscle (us) and screaming (him).
I wish evolution would catch up with autism with the proviso that if you have autism, you also get pretty, self-manicuring nails.
It only seems fair.