Monday, February 27, 2012

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)


7 comments:

  1. I'm glad you're taking "me" time. Sometimes its so hard to fit in but its sooooo worth it.

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  2. Hot chocolate is a similar exercise in this house and I seem to remember blogging last year about how I knew I was in for a difficult day when using the wrong spoon to make it led to meltdown number one ..... xx

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  3. I really like your blog.

    My hubby and I have coffee dates too. No more night time dates. Oh well. We're too tired for romance after a 9 o'clock p.m. movie anyway. :-)

    My son is 13, has ASD, Tourettes, and maybe a mood disorder and just got out of the hospital for the 3rd time because of the severity of his behavior. I'm impressed with all you can do with yours!

    I've been to Ireland and had had hopes of a summer home there. It's still in the back of my mind. How are the autism services? Is it hard to find in-home help?

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  4. Cool post. I wish my Mom had a marriage like that...my dad isn't really there. Me and her take care of my brother (he has autism)...well she does most of it and I help where I can. Since getting a full-time job, it's been a bit hard for me!
    I wish she'd take that me-time though. She needs it.

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  5. I know that I often feel guilty for taking the time to even paint my toenails and I
    only have one seemingly non autistic child. It's brilliant that you are taking the time to mind yourself as well as battering a boxing metaphor to death. Multitasking is alive and well :-)

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  6. @ Lisbeth, absodamnlutely
    @ Blue Sky, I may rference you when writing up my hot choccie thesis
    @ Alisa, thanks for checking in! Services in Ireland vary from area to area. Finian has always had pretty decent services, but there are regions where autism services are non-existent. We get 3 hrs home support per week, which is a godsend
    @ Devina, autism has a profound ripple effect on a family, and sadly some people just aren't up to the job. I really hope you're looking after your own needs too
    @ Alison, you do guilt??? We have taught you well
    XXX

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