Judging Without Being Aware

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 your child, they judge your countenance and your manner of handling things. Taking the time to explain only sets off another set of dissatisfactions because they aren’t there to understand or show kindness. Their sole goal is to make you feel like your parenting skills are not where they should be. . . .when in actuality, they are clueless of the walk you take daily. They’ve never faced a morning scent of vomit that doesn’t make you nauseous because of the obvious, but you become painfully aware that your child slept in it the entire night without a care in the world. Not one thought entered in your child’s mind to come and get you and make you mindful of a disturbance in his health. Not one ounce of urgency or concern shown, simply because he didn’t know how to formulate his words to articulate his feelings or pain. So now this sick feeling enters your whole being and it soon turns into anger, sadness and hurt – bottled up in one. Bystanders murmur because they haven’t encountered people asking them to leave a store or a library. Your child’s behavior is on display and most think loudness is equivalent to misconduct. Meltdowns are considered tantrums. They don’t live in a world where sometimes it’s not what they say verbally, but their silence of discontent makes you want to run away. I tried shopping when my children were in school, but there were times I had to take them with me. That was an event all by itself. I received outsiders shaking their heads both while attempting to hold my son as he is on the verge of sounding the alarm AND while I ran a marathon, trying to get what I needed quickly to avoid the inevitable triggers of sights & sounds. In the library, I kept headphones on Callie while he played computer games. That lasted about 10 minutes or less – long enough for me to get a couple of books & videos – not each but altogether. If I got 3 or more of anything, it was a miracle. Normally, I would feel stares before hearing Callie. His arms waving and legs moving attracted people to stop and wonder “What is wrong with that kid?” or “Where is his mother?” Shhhing him or literally dropping everything & trying to make an exit made things worse.  At church, we sat in the back for years. Most people thought we were MIA. They saw my husband but rarely saw us. I purposely remained in the rear so we wouldn’t be seen or heard. And even then, whenever my son’s sensory problems became too much, we headed to the car and sat (in the cold and the heat) until service was over. Even though the faithful parishioners who sat near us had become accustomed to the Sunday morning norm, I didn’t want to disturb their church experience the entire time – every time. Very few complained but I’m sure their frustrations caused them to pray for us to miss a Sunday. The fact of the matter is they came to hear the Pastor. . . .not Callie. This is just a glimpse of a story still being written, but it’s worth mentioning because special needs parents want to be understood. They have concerns as high as the tallest mountain and have needs as vast as the widest valley. Weary & worn are twins that follow them everywhere. So judgements should be dissolved. These words and actions of negativity can be life altering and it’s something parents, such as myself, can live without.   Judgements aren’t compliments. They’re not even useful advice. They cast doom on a life that is already climbing up a challenging rope, unsure of the destination. We need to be able to exhale freely without the feeling that our fate will be an unpleasant one – all because of our decision to breathe out what we’ve taken in and held for so long.  We need to know our parenting skills aren’t supposed to favor everyone else’s. We have our own style & way of reaching our child. . . and that doesn’t have to be accepted by society, even though it would be nice. And we need the opportunity, with no guilt attached, to finally check one worry off our list.

 

 

Thanks for listening,

 

Portia