What goes through your mind when you hear “special needs child” or a “special needs family”? You probably feel one of the many human emotions that we reserve for disability. Depending on your lack of or abundance of emotion, you likely feel sympathy, compassion, gratitude that you’re not in their shoes, amazement at how this family keeps it together, thankfulness that they shared something with you, pity, surprise at why they look so normal, discomfort at being at the center of a conversation about disability. And many more. There’s a whole gamut of emotions that we reserve for disability. The only emotion that we sometimes don’t have for special needs families is “hope”.
Yes hope! Cuz we have hope. Loads of it. May be more than you actually. Not because you’re a pessimist. Or because you wallow in despair. But because we need a lot of hope. And hope ignites hope so we always have it available.
Hope is our defense mechanism, our armor and our faith. Hope is our religion, mantra and belief system. Hope carries us forward and lifts us higher. Hope makes us strong and hope makes us happy. Hope is what makes us spur forward with more vigor after each set back. Hope is what keeps us from sinking. Hope keeps us counting the victories. Hope makes us cherish the small things.
I know that to the outside world, the life and functions of a special needs family are probably a sad mystery. People probably think of us as “poor powerless parents” who can’t fix their kids. There is a lot of sympathy that comes our way. There isn’t enough help that comes with it.
I know that hope is probably the last thing that you think we would have. To people who don’t live diagnoses about their kids, hope is likely reserved for families who have typical kids with predictable futures. To them our hopefulness may sometimes look like stupidity.
I can’t speak to where all special needs families draw their strength from but I draw the most from the well of hope. And so do thousands of women on a Facebook group that I’m part of. Many Facebook groups actually. Thousands of families. They all work with hope and for hope.
And don’t think that I wasn’t told that hope is futile in my child’s case. I was told this by extremely well-meaning friends and family. People who thought that I should save myself before I burn with my child’s diagnosis. People who recommended group homes and psychiatric medications when my child wasn’t even three and I was in my twenties. People who questioned my running around for therapies and specialists. People who thought my money could be put to better use.
But all it did was buck me up to set the odds in favor of me. That’s the slightly nutty thing about hope. It shines brighter when people try to blow it out. It’s stubborn and scrappy. It doesn’t leave our side just because we aren’t paying attention. It’s the annoying friend that’s also the last man standing with us. It has its value in being there when not much is.
A friend recently talked to me about how family doesn’t get it. How they think that she is grinding herself to the ground with the amount of work her child needs. They feared her marriage is suffering. They suggested an out. She didn’t take the out. She felt that an out is the antithesis of her hope. She has carried on even though she is being told to abandon hope and save what she can.
But I get when hope is particularly hard to come by. Especially when we are dealing with a particular set-back or regression. When we are trying to work through an obstacle we hadn’t counted on. Occurrences like these give validation to the nay-sayers. They make us feel that our hope was a little bit of a coping mechanism and that was all that it was.
But that’s not true. Hope is the driver of our life. It’s not a coping mechanism.
For me, the constant in and out of hope has slightly gotten better. I have learned to own special needs. I have told people that it’s my life and if they can’t deal with it then I can’t help them. If my special needs makes them feel hopeless about the kids they’re going to have in the future or how special needs has tainted their family then I can’t help them. I have stopped people from forcing their baggage on me. That has been a great way to preserve my hope for today and tomorrow.
My mind as a woman 