Wednesday, October 13, 2010

Buying Hope

Jennifer Byde Myers

Lotions, potions. A special chair for eating, a special chair for learning at home. Shoe inserts, leg braces, seat cushions with no grip, a lot of grip, seat cushions with little bumps, seat cushions with little bumps and gel inside, and a backrest. Fancy forks with bendable handles, child-sized forks, spoons with holes in the bowl, bowls with grips on the bottom, bowls with the side cut out, and special chopsticks, and sippy cup after sippy cup with any number of parts and combinations to mess up.

Small piano keyboards, and larger piano keyboards, and a keyboard you can walk on, just like in the movie Big. A touch screen monitor, an adapted computer, an adapted tricycle, an expensive German tricycle. Jackets that zip with a nice big tab, pants with an elastic waist that are easy to take off, overalls which are difficult to take off, and hook and loop shoes, always another try for the best hook and loop shoes.

An art easel, another art easel, another art easel, another art easel. A tambourine.

Crayons for the tub, foam letters, magnets in the shape of the alphabet. Vitamin E, vitamin B, fish oil, grape seed oil, gluten-free, flavor-free foods, straps and Velcro bands. A single button talker, a four-button push talker, a talker that lights up, a button that makes the toy move, cars that go when you barely shake them. Books that talk, books with special flaps for little fingers to turn pages with ease.

Honey oil, lavender shampoo, and a wet suit. A car seat, a booster seat, a bigger car seat, a car seat that can only be purchased through Medi-Cal. Fat crayons, triangle crayons, multi-color crayons, finger paints, paint that sticks to your fingers, brushes that attach to a child’s hand. Weighted vests, extra weights, leg weights, and bands that go around his torso to keep him sitting up straight. A laminator and special software. A pool float to keep him above water, and special swim pants to keep everything sanitary, and shoes to wear in the water so he can keep his balance. Small plastic brushes and a folder to document each time we brush, and another folder that is a special color to track everything, and while we’re at it a new computer to better document his life and his doctor’s appointments.

A toothbrush that goes on my finger to brush his teeth, an electric toothbrush, a toothbrush that lights up, a toothbrush with Dora, with Spiderman. Ski hats, headphones, an iPod, tape recorders, a booster seat with headphones already built in. Cup holders that attach to strollers, and wheel chairs, and windows. Cup holders that go into other cup holders for an easier reach, and strappy water bottle carriers that sling over seats and on to wheelchairs. Flashcards, and puzzles and every brightly colored spinning, honking whirly toy we could ever find.

My house is filled with piles of hope.

Some things we bought all on our own, most were purchased because someone else thought we should, or we saw it work for another family. They were birthday presents from grandparents, and things we bought off Craig’s list.

When things are going well, the toys and books and projects around my home are like little pieces of inspiration, a future where Jack’s communication will be unlocked, and he will be able to ask for the four other toys in the bin. On hard days, this jumble of disaster we call home is a minefield of disappointment, the closet barely holding in all of the unsuitable gifts my son has been given over the years, and the house a tripping hazard of wasted money.

When he was younger, when some people thought Jack was just going to “snap out of it”, we often felt desperate, and there was always a steady flow suggestions on what to buy. Jack comes with multiple diagnoses on top of his autism. His cerebral palsy makes us a target for all of those neurologically stimulating things for autism, and all of those special devices that might serve a purpose for improving his balance, coordination and bilateral movement.

This over-buying is not limited to parenting a special needs child; we all want more for our children. Families with typical children go through ballet lessons and move on to soccer before settling comfortably at softball. There are blocks that lay waste when more intricate building materials and model planes arrive. The difference is that they can be finished with those blocks because their child has grown out of them, whereas my child just never did master stacking more than three high, and I bought the next set of toys because I thought perhaps they would be the object of desire for my son.

How many years, how many dollars did we spend before we realized we shouldn’t try, and we couldn’t “fix” Jack. Jack is not sick. Jack is not broken. Jack is whole and beautiful and amazing exactly as he his. And if that sounds like we’ve given up hope, we haven’t. Instead we have given up paying for someone else’s notion of hope. We’re doing our best to stop trying to buy our way out of the constant guilt we feel that we aren’t doing enough for our children.

We’ve given up purchasing every single thing that worked for some other kid with autism. We focus now on what our family needs. Can Jack really use it? Will it improve his quality of life? Can we afford it? Does it align with our family’s value system? Can we buy it locally? Can we borrow it first from someone else, to see if it really works, because most of the time we are left to struggle through purchase after purchase, never knowing whether something will work until it’s paid for and assembled, and not returnable.

It took a few years, but we have crystallized several thoughts, ideas I go over when I am confronted with an opportunity that feels like: if I get it right this time, it will forgive, somehow the thousands of other dollars we’ve wasted.

·      Always borrow the item first if you can. If you can test drive the item, or a very similar item, you can avoid making costly mistakes, and purchase the right size or style the first time.
·      If an OT, a PT, or some other professional suggests you purchase something, make sure that medical insurance, or a state program doesn’t already cover that item before you pay out of pocket. Budget cuts and unfriendly coverage mean that whatever it is might not be covered, but it is well worth it to ask.
·      Think about whether the device will work for your specific child, and you are not purchasing it solely because you saw another family’s success. This has been my number one purchase instigator, and it is always the most depressing thing when the item doesn’t work for my kid.
·      Steer clear of snake oils and false prophets. If the therapy/device/food/supplement says that it treats autism, and several other things ranging from dyslexia to ADHD to sleep apnea, look more carefully, and buy more judiciously to make sure that’s really what your child needs.
·      Use your crafty, MacGyver-like skills to adapt regular items for extraordinary uses rather than pay for the special item from the special catalog. The hardware and fabric stores have many ways to make things useful, less expensively. We have Velcro, duct tape and a variety of bands and clips available at all times in our workshop.
·      Do not let the sorrow, or guilt of other family members influence your purchasing decisions. Grandparents, for example, have the weary task of being our parents, and our child with autism’s grandparent, and they want all of us to be happy. Their need to “fix” things can make everything seem necessary.
·      Use the Internet. Research the item carefully before you buy to get the best price, the best one of its kind, and the exact thing you need. I often type in whatever I’m looking for, and the word “awful”, “terrible”, or “never again” so I can find the specific complaints others may have had. (This trick also works really well for hotels and restaurants.)
·      Build on your successes. Look to see what you already have that didn’t work, or gave you great success and build from there.  Several items we purchased as a “cure all” for our three-year old boy, were disappointments then, and have become hits now as he has gained more skills. 

What I realize, as my son turned ten last week, is that the most important thing I can garner for him, the most valuable thing I can do, is be the best parent I can to him. Encouraging his strengths and helping adapt his world to accommodate his deficits, is mostly done with words, and patience, and affection, and those things don’t cost me a thing.