I believe that man will not merely endure; he will prevail. He is immortal, not because he alone among the creatures has an inexhaustible voice, but because he has a soul, a spirit capable of kindness and compassion. ~ William Falconer
It’s painful sometimes to see how our lives have changed through the years; how the path has diverged so greatly from where we thought life would take us, what we thought we’d have, where we thought we would be . The kind of life we would give our children. The fact that we thought we’d have more than one child or that we are now living on roughly one-third of the income we had when Nik was born but our expenses are pretty much the same or slightly more. You know, those developmental toys and therapeutic items all add up quickly. Not to mention time lost from work for hospitalizations, etc.
We know we are certainly not alone in having our lives turn out so different from what we envisioned as young(er) newlyweds and expectant parents. Each person, each family, carries their own burden of sorrows with them. Sometimes, they seem so unbearably heavy that there is a very real danger of suffocating under their weight, no matter how hard you try to keep them from crushing you.
Yet, somehow, in the midst of it all someone reaches out a hand through the magic of the internet and makes the impossible, well, possible. Sometimes it’s with loving and supportive words to let you know you’re not alone and you’re not foolish or crazy— or whatever other self-denigrating adjective you’ve put on for the day. And sometimes, the generosity of one person sets in motion something too wonderful to imagine it could be real.
The daily struggles to see the forest for the trees in a world of developmental delays, disabilities and medical challenges is difficult. I try, I really do, to stay positive and hopeful and keep my eye on the bigger picture —and always on the joy that is my son. But, sometimes, it is defeating to look around and realize there are opportunities I can’t afford to give him. Not now, anyway. My husband and I have learned a lot about ingenuity and making-do and we try not to ask for favors or charity. Certainly not for ourselves and, rarely, for Nik unless it’s vital.
We’ve been blessed with a great state university which has a full-time program in disability studies. One of the services they provide is an assistive technology initiative where anyone in the state may borrow gadgets, gizmos and devices to try for a two-week period. It’s kind of an assistive technology lending library. We’ve borrowed numerous items from them in the past, so when they got on board with iPads, I was excited!
Nik’s cerebral palsy, while appearing mild to the casual observer, leaves him with little ability to hold a crayon or a pencil. He cannot control his movements enough to do more than scribble on paper no matter how hard he tries; even hand-over-hand is difficult for him when it comes to any sort of writing or drawing. The concept of a mouse and keyboard are beyond Nik’s cognitive processing ability at the present. I figured a touch-screen technology would make it easy for Nik to continue to expand his growing love of letters, numbers and words (ok, and YouTube videos, too!) and to be able to express his knowledge in ways that even his speech-generating device doesn’t allow him to at this time.
I’ll be honest, our first trial with the iPad, back in July, was a flop. My expectations that Nik would miraculously grasp the concept of the programs we tried, would be able to control his fingers enough to create the desired results were too high; I had so much emotion invested in his success. Nik, quite simply, wasn’t interested. I returned the device with regret; I had become totally addicted to Angry Birds. Nik, on the other hand, didn’t miss it at all.
Fast forward a few months. With the daily exposure to school, Nik’s desire to learn and to do “work” —as he calls it on his speech device— grew rapidly. It wasn’t until he was hospitalized in late October that I began to think he might be ready to try the iPad again. The hospital has an amazing, state-of-the-art touch-screen TV/computer system in each patient room. While Nik was confined to bed for the better part of five days, he was highly motivated to figure out how it worked. While he couldn’t quite navigate with ease, he definitely caught on to the whole “I touch this screen and something cool happens” vibe.
With the change-over to his new school placement on the horizon, I decided to give the iPad one more chance before giving up entirely. The difference a few months has made! Nik took to it like a fish takes to water. He went from only mildly curious to avidly obsessed with the First Words spelling game (trial-version) and some of the simple matching and puzzle games. His rapid facility has amazed us and given us significant hope that this could be a technology which would be useful for him in school. But, we also knew the price was out of our reach. Not just now but for quite sometime.
I posted some pictures of Nik with the iPad on my Facebook page and people began to comment that we should get him one. I made it clear it was out of our reach right now. That’s when the angels, the unicorns— the fairy-godmothers struck.
Shivon— who has a world of great karma due to her, I swear— sent me a private message to ask if she could set up something for people to chip in for an iPad for Nik. I didn’t answer her for two days as I battled with my pride and my fear that people would think we were being greedy or presumptuous. My love for my son and my belief in the possibilities before him won out. I told Shivon it would be ok.
Unbeknownst to me, while I was hemming and hawing and stalling, Shivon had already put her head together with Jess and Shannon to figure out the best way to achieve the goal. Once I gave the green light, they were off and running.
As the money poured in —from places and people I’ve never even heard of as well as old and dear friends—I felt like an announcer on a public radio pledge drive as I emailed Shivon the updated totals. It was funny— and unbelievably humbling and moving at the same time. In less than forty-eight hours the goal was not only met, it was exceeded. Nik’s iPad has been ordered! Shannon even arranged for some of the folks from Moms With Apps to hold an “apps shower” for Nik; they sent codes for numerous apps for free to help us get started. The generosity has been overwhelming.
I think my tweet from the first night of fundraising aptly sums up how I felt:
I won’t name all the names of the many contributors as I’ll be sending a special thank you to each of them once Nik’s iPad has arrived. I don’t know if I will ever find words to adequately convey the depth of my gratitude for their generosity or to tell them just how much hope they have extended to our entire family. Their selfless gesture has touched us in ways they may never know or understand.
But, the story doesn’t end here with Nik.
There are so many families just like mine —families with a wordless child or even adult member with autism. Families who cannot afford to take advantage of such an incredible technology breakthrough without financial assistance. Families who may not know the possibilities exist or who are too proud to ask for help.
This year, the HollyRod Foundation is giving away iPads to families who would not otherwise be able to afford them. There is detailed information on the foundation website, including opportunities for people to make contributions to help others experience the miracle of communication, the wonder of discovery of the gifts which lay hidden within each wordless person. Please give what you can and share the information with your friends, family and colleagues. (For convenience, you may text HollyRod to 27138 to make your pledge at any time.)
Your gift, no matter how small, can change a life —a family—forever.
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