- Published on Friday, 02 April 2010 09:19
Guest post submitted by Tiffani Lawton, Special-Ism
For anything worth having one must pay the price; and the price is always work, patience, love, self-sacrifice. No paper currency, no promises to pay, but the gold of real service. - John Burroughs 1837-1921, Author and Naturalist
Doesn't that just sound so Utopian? What about the gold of reality? Let's take a look see.
Work: a word that just does not adequately describe what parents of children withhave to do in a day, a week, a month. Almost every day of the week involves some sort of therapy. Mondays are speech, occupational and physical therapy. Tuesdays are therapeutic horseback riding. Wednesdays are therapeutic group tumbling. Thursdays & Fridays are therapeutic swimming. Saturdays are private therapeutic tumbling. Then there is constant research to tap into uncharted resources. The battle begins upon wakening and depends on where their sensory systems are on that particular morning. They can be sensory defensive and dressing them for the day is an all out war. Will they eat this morning? Off to school, and one would think that is a breather. Nope, that means phone calls to more resources, more applications, more listening to the background music while on hold to the insurance companies. Oh, did they pee on the floor or play in their poop? That means extra laundry and a bucket of suds with lots of scrubbing. Did they throw their food all over the floor? More scrubbing....but hey, you have a meeting scheduled for their IEP so that will just have to wait until you get home, then the phone rings from one of their therapists...the floor waits. At the end of the day, when everyone is good and worn out, there is a bedtime war to close the day. Then, you pass out from sheer exhaustion, physical and emotional. Hey, who is that man laying next to me as I have not seen him in a while? Sound familiar?
Patience: according to a wise individual, Francois Auguste Rene Rodin, "patience is also a form of action". So that means more work! When your child is melting down in the post office, you have to not only be patient, but creative...you need to find the one thing at that precise moment that will derail him from the meltdown to transition to the next activity. Lot's of deep breathing is required. Most patience is completely exhausted with the child, so when someone really absurd does something really insensitive, there is just no patience left within to handle the situation with any level of diplomacy.
Love: "Ahhh!", exhaling with a sense of relief. Love is something that we parents of autistic children demonstrate unflaggingly day in and day out, for if it was not for the deep love of our children, we would not be able to get it all done. We relish the simplest of rewards, the smile, the laughter, the look in their eyes when they come home from school that screams they are so happy to see us. I love the sound of, "mommeeeeee", as my three year old comes running towards me arms open wide for a great big hug. Just awesome!
Self-sacrifice: an understatement. I just don't have time to make that appointment for the mammogram that has been on the fridge for six months. I avoid making the appointment to see the general practitioner to discuss my generalized pain from either rheumatoid arthritis, fibromyalgia or the hydromyelia in my spine (they have yet to figure out the cause) because instead of offering some real help, I will get lectured about my blood pressure. "Eat less salt", they declare as if that will make life better and decrease the blood pressure entirely. My husband still has many rounds of surgery to remove his skin cancer, but how do we squeeze that in? We have so many appointments for our developmentally challenged tots and then we have two teenage boys on top of it all. It is like being under water trying to breathe through a straw.
No paper currency: what? Are you kidding me? Anything worth having in the world of autism requires just that, lots of paper currency! The insurance costs, the co-pays, the out of pocket expenses are incomprehensibly through the roof! There are so many therapies that we would like to offer the kids but can't do because we lack paper currency.
The gold of reality is not so utopian after all...see, we work harder than most, find patience where we did not know it existed, love with such intensity and minimal reward and are masters of self sacrifice, yet, we can only really get ahead the game with paper currency!
For those with autistic children, I am sure you can identify.
For those without children with autism, consider helping a family with an autistic child. Bring them a meal, volunteer to play with the kids so that the house can be found amongst the chaos, treat them to some pampering time to recharge their batteries so they can continue to forge ahead, offer to take any of the workload off their shoulders, take them out to lunch as they really feel isolated from the real world, and consider making a donation or helping to raise money as they really need it, like most need air to breathe. That is the gold of real service!
ABOUT the Author:
Tiffani is the owner of Special-Ism and has an autistic tot.