As well as trials there are many advantages to loving and parenting a child with severe and complex disabilities. Here are my Top 10 Advantages.
1) Disabled Bays
No more aimlessly driving around a crowded car-park. With your precious Blue Badge you get to park in Disabled bays, assuming some unworthy driver hasn’t already nabbed it. If all else fails there’s always forbidden double yellow lines.
2) Jumping the Queue
You get preferential treatment when boarding a flight, ferry or euro-tunnel. Also nothing beats jumping the queues at a theme park.
3) Free Entry
After paying for my child I then get in free. Whether it’s the cinema, zoo, theatre or swimming pool. *Caution: if you want a freebie into the latest Saw movie, you might be out of luck. If you’re a Disney/Pixar fan then you’re set.*
4) Celebrity Status
No more blending into the crowd. People watch you wherever you go. Admittedly it isn’t a ‘Wow, look who that is’ stare. It’s more an awkward ‘Awww look at that bedraggled women and terribly disabled child’ gawp.
Attention is attention though, let’s not be fussy.
5) Busy busy busy
Endless appointments show your importance has cranked up to fever pitch. You go to numerous therapies while having the pleasure of perfect strangers trampling through your home, checking you out. It’s a lot like Big Brother but with less sleep.
6) Extreme Parenting
Think Mission Impossible theme tune. Imagine Tom Cruise clinging to a cliff face by his fingertips. That’s how I feel most days. I respect other parents who confess how tricky parenting is. I feel my experience pushes my
Martial Parenting Arts skills further… Nurse (not just the magic kiss and applying a plaster type) It becomes second nature to draw up dozens of medications. You learn about PEGs, seizures, resuscitation and other hard-core stuff.
Occupational Therapist Making and adapting things, always seeing opportunities for development.
Physiotherapist Daily stretches, 24 hour positioning, handling and active therapy.
Speech and Language Therapist Interpreting noises and movements. Speaking both halves of the conversation while researching high-tech talking aids.
Wheelchair Technician Making adjustments and adaptions.
Visual Impairment Specialist Stimulating sight and promoting all the senses.
Dietician Not just ‘Eat your greens’ or ‘Have you had enough to drink?’. You learn to calculate calories, introduce essential nutrients, tailor feed rates and dose. All in a fine balance with reflux, weight gain and tolerance.
Weight lifter as your child grows in weight, but not ability, you learn to lift a 28kg child with the ease of any burly man at your local gym.
7) Every Detail Counts
You notice everything. Every grimace, facial expression and hand gesture. Each movement speaks a thousand words. You learn to notice, treasure and interpret them all. You then appreciate the other children around you in a more profound way. How they grow, develop and learn so effortlessly.
8) Living in the Moment
Every day and every moment is precious. You learn that life can change in a heartbeat. So you make choices based on what you believe is important. Cherishing the people, the relationships and the memories. It’s less about yesterday or tomorrow and all about today.
9) Love beyond imagination
When life pulls you beyond your limit you are held together by the thinnest of strands. A minute and delicate thread woven by the most potent and powerful emotion imaginable. Love. Wordless, endless and unconditional love.
10) Transformation is inevitable
Immeasurably and forever you, your family and your life are changed. You reconsider your definition of normal, success and worth. You see beauty where you once saw pain and joy through your tears. Life becomes a gift never to be taken for granted. While the grey tones of living shape, define and enhance the golden hue of precious moments.
So these are my Top 10 Advantages but there are many many more. What are yours?
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