Sometimes in this world of special needs, the landscape is barren and dry. I feel as if I am stumbling through the desert alone, hot sun beating down relentlessly and without mercy, lips cracking and throat screaming for just a sip of cool water.
Sometimes it is a landscape black, full of despair, trees gnarled and twisted, monstrous and looming. My heart pounds with fear and every path before me seems fraught with danger.
But there are times when the trees are full and verdant, fingers of sunlight stream through the dense leaves and joy and peace overwhelm. Those are the good days, when my children and I are in sync, when the gears mesh and for once we have a day where everyone is relatively happy, where there aren't constant crises and fights and broken things. A day where children are playing happily with one another. A day when the hugs come easy and the tears never fall.
There are times when I encounter another in my landscape who lives in this same place, and we connect, embrace, offer love, empathy, a shoulder or an ear.
Being the parent of special needs kids is a lonely road sometimes. When most of the parents you know in your neighborhood and at your childrens' schools have neurotypical children, its easy to feel the odd man out. Easy to feel the eyes staring at you when you arrive to sign our your child who has spent the day being inappropriate and sometimes even violent with other children and teachers. Its easy to feel like no one understands you or gets what you're going through. Its easy to take a walk through that door with the sign "Martyrs enter here" hanging on it. What's hard, sometimes, is accepting help. Accepting love. Accepting anything other than fear and recrimination and self-hatred. Because even when you know better, its hard not to wonder what you did wrong, why your children should suffer simply because their parents and their parents' parents genetics have combined to give them a horrible combination of biological and neurological time bombs.
Its not easy to look at reports about your child that say things like "does not socialize with other children." "Does not appear to be engaged in what we are learning most of the time." "Pretended to cut throat with scissors and waved scissors at other children." "Throws books and kicks chairs." "Hits other [children]." "Not sure he hears directions."
Not easy.
But there are still going to be days when my landscape is full and verdant. Days when I encounter others on my path who will give me what they can, give of their love and experience. And we will keep pushing forward, no matter what. Quitting isn't possible. Surviving isn't optimal. Succeeding is the place where I accept limitations, celebrate any victory no matter how small, connect with my children and with other people, advocate effectively and where we make progress, even if it's just an inch at a time.
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To all of you who continue to reach out in love and empathy via comments and email, Facebook and Twitter: Thank you. I need you. Keep doing exactly what you're doing, because your words and your help mean so much.
And to my Mom, who is a frequent helper on this crazy, twisted path: I love you. You are everything I ever needed in a mother and I don't know what I'd do without you. Thanks from the bottom of my heart for your listening, your shoulder, your busy hands and your gentle heart.
