I was unloading the dishwasher the other day, and my wedding ring clinked against a glass bowl, making a sound so similar to a sound from childhood that I was transported instantly to a motorboat, zipping through briney rivers, the sun on my face and the wind in my hair. I even caught a whiff of salt air.
I grew up on a tidal creek off the coast of Georgia (on a small “hammock” island just before you get to Tybee Island), and we spent every weekend during the summers out on the boat. My mom was in charge of the beach bag, chairs, towels, snack foods, lunches, and packing the cooler, and my dad was in charge of everything relating to the boat and the dock – fuel, mechanicals, boat and dock maintenance, crab traps, lines, first aid/life jackets, and driving the boat. My brother and I would cast…
I’ve struggled these last few weeks. In my mind I know that I’ve accomplished so much, yet it feels as though it’s never enough. It’s hard to stay optimistic when it’s sink or swim and you feel as though you’re drowning…
The weight of hopelessness hangs heavy in the city air. Everywhere I look people have no sense fo pride in their surroundings. No respect for themselves or others. They drown it out with drugs, alcohol and loud music all night long. My son runs around holding his ears and whining. He pulls me toward the door. He just wants to get out, and so do I.
Like prisoners we long for freedom. In our dreams we escape to a better place. A place we can thrive in security, knowing we have a home and a place we belong. We know that everything in this life is temporary and that better things await.
Hardship, Perseverance, Character, Hope…
Sadly, I feel as though the world has no place for us. Why don’t they understand? They seek a cure, but we don’t need one. They see disability were we see possibility. They think education is expensive, we know ignorance is even more expensive.
Is communication and literacy too much to ask from our community? I know special education costs money. My community pays for a certain quality of education for non-disabled children; but my community struggles with the negative perception that children with severe disabilities are a burden and not worthy of the cost. Who are we to question who is and isn’t worthy of life?
I have hopes and dreams like everyone else. Don’t stifle my hope. Believe in me. Know that I can do this. I’ll never give up. I’ll never stop trying. Everyday I amaze you. I accomplish more than you ever thought I could.
We may not all have the same abilities, but we have unique abilities. Everyday we learn and we grow.
I admit I’ve done my share of tilting windmills, struggling against seemingly futile causes. By its very nature, the victory is in the struggle. Who can win a battle, when he retreats in fear of loosing?
Imagine a world without disabilities, a world without special needs children. What kind of world would it be? A world of Stepford children and Stepford wives, with unnatural perfection – zombies, robots, lifeless and unhuman. Brainwashed into submission, they believe in man’s ability to create perfection. They’ve focused their energy on perfecting others, and neglected bettering themselves.
I see a world of possibility. Miracles happen everyday. I have a special child who brings out the best in me. He touches so many lives with his infectious laughter. He communicates joy without speaking a word.
So as parents, we struggle on believing that communication and literacy is possible and that we are capable of teaching him. We must always believe that the task is doable and that we are capable! We must guard our thoughts. The world has successfully educated deaf and blind children for hundreds of years.
For all of history, the worlds greatest thinkers have believed in possibility.
I’ve been so busy dealing with school and addressing Stephen’s educational needs – I didn’t get a chance to write or post anything last week. Dealing with school is one situation where I feel as though everything I say or do is judged without the administrators who are making the decisions knowing the facts.
I’m a little bummed out to have so little time with family this summer. Summer is the time of year I look forward to. This year we will be cooped up in our little apartment for 6 weeks – just so that Stephen can attend day camp for 3 hours a day 4 days a week. I’m not sure that attending the day camp (provided by the school district as a reparation for services that were not provided) is in Stephen’s best interest.
We’ve decided to give it a chance, and alter our plans as we see fit along the way. What about potty training? We specifically asked for the school to continue with potty training while he’s there. The district ignored our requests on summer school and potty training. Is 3 hours a day at a summer program more valuable than the independence he will gain by being fully potty trained at age 7? I’m wondering how much of the 3 hours a day Stephen will actually participate, and how much of the time he will just be waiting for mom and dad to come get him…
When is it ok for parents of special needs children to ever have a bad moment? Somehow all is documented in your mind, as well as, in other people’s minds. There’s no way that being angry where dishes are shattered, doors are slammed and a long drive away from it all are approved and seen as a way of release and not a permanent way of life. Sobbing uncontrollably. Living in isolation. Dressing in clothes of woefulness. Breathing the air of no hope. Sad songs on instant replay. Your mind becomes a nomad, wandering from confusion to disbelief to what? to why? to how? and never resting long enough to land at one spot. And to add weight to your worry, there’s the sting of onlookers. The ones who portray a life of perfection and make it their mission to be that constant reminder that your life is not perfect. Not only do they frown at…
'And above all, watch with glittering eyes the whole world around you because the greatest secrets are always hidden in the most unlikely places. Those who don't believe in magic will never find it.' Roald Dahl
A blog dedicated to my personal research on intellectual and developmental disabilities. In order to highlight issues affecting people with developmental disabilities and debunk stereotyping myths, the first step is to become informed and spread awareness through visual storytelling and facts. (Dedicated to my older brother, Doug).