Special needs mom.

Special. Needs. Mom.

Three little words, tiny words, but they feel like cement in my mouth. They are so heavy. I can feel them weighing down my tongue. Gaining weight so rapidly that I have to spit them out as quickly as they come. Specialneedsmom. They shoot out with such velocity that I wince when I hear them. Like bullets ripping through the air. I loathe those three words. I detest them with every cell in my body. The very core of my being rails against them in fierce opposition. Though not for the seemingly apparent reason. Not because I have a special needs child. In fact my child—autism, my autistic child—has nothing to do with this visceral reaction, other than to be a catalyst. Of course, like everything throughout my life, it is so much more complicated than that.

I hate those three words because they stab straight to the center of my own special need. The special need I have held tightly inside of myself since I was a child. The special need that without my ever being actively conscious of its insurrection has taken over to become the driving force of my life.

My special need. The need for normalcy. The need to be a normal person. The need to have a normal life. The need to be the same as everyone else, to NOT be different. To not be other. This need that I have been clutching to myself for so long. For years. For over two decades. For 24 years if I am to be honest with myself, possibly longer. I have wanted to have a normal life and to be a normal person so desperately and for so long that it physically hurts. This need, it has become akin to an organ deep inside of my body. Always pulsating, always directing, but never to be seen nor touched. Never examined, never inspected, until those three words came rushing at me: special needs mom. It is as if there was a magnetic attraction pulling on those words, hurtling them through my body until they crashed into my own need. That is where those words are. I can feel them lodged there. Continuously rubbing against my own special need, leaving abrasions and lacerations. So many lacerations that I can sense my own need hemorrhaging. Hemorrhaging, and hemorrhaging and there is nothing I can do to stop the gush.

The truth is I wouldn’t stop it if I could. There will be no suturing or cauterizing, now that I have seen this need for what it truly is: infected, sick, purulent, destructive, toxic. This need, nestled within so cozily, so seemingly unobtrusively, has been pumping bile into me for so long that I had almost forgotten it was even there. But now that this need is wounded, now that the slow trickle has turned into a gush, I see this need for normalcy for what it really is: shame.

The shame of being an abuse victim. The shame of being a rape victim. The shame of being a vulnerable, unprotected, discarded child. The shame of being fatherless. The shame of being a minority in an non-diverse region. The shame of being a woman in a patriarchal society. The shame for things that have little to do with personal choices on my part and are not viable things to be ashamed of by any means.

It is shame, not normalcy, that whispers to me in its malicious, blistering voice, messages of inferiority. It is shame that keeps me silent when I know the answers to questions, whispering that I do not know what I am talking about. It is shame that keeps me from speaking up at meetings, whispering that I do not really belong at the table. It is shame, pumping through me, filling me with inferiority, doubt, fear, anxiety, depression. Continuously telling me that I am not smart enough, or competent enough, or educated enough. That I am not strong enough, or brave enough, or good enough. That I am not enough. This need is shame and it does not serve.

As a person who has spent serious time in therapy I am a huge believer in affirmations. I keep them scattered throughout my home. Tucked into mirrors, and bookshelves, window ledges and desk tops, where I can stumble across them often. For me affirmations are akin to breadcrumbs that I leave for myself. Words, quotes, lyrics reminding me of who I am when I am lost in the dark. Little luminescent stones to light my path until I can shine again. They are tiny pieces of hope reminding me that I knew this darkness would come and that I am cunning enough and strong enough to fight it back. So naturally when we realized that G was autistic I scoured the internet for affirmations. For mantras to hold close and pull out on the days where the darkness of grief is so thick and so black it all but smothers my light.

I found affirmations on strength and hope and faith. On perseverance and persistence. However, the quote that stuck with me the most was from Susan Zajicek.

“A little person who has special needs has taught me to  be braver and stronger than I ever thought that I could be. I’ve learned coping skills that I never knew I had. I’ve learned to fight like a prize-fighter under stress, but most importantly, I have fallen in love with a little person who has made me a better person.” – Susan Zajicek “Parents Supporting Parents”

I clung to it. I pulled it out in all the moments I could feel the shrouded hand of pain at my back. Every evaluation result, every IEP meeting, every difficult therapy session. Every hyper-focused tantrum, every sensory meltdown, every stare. Every stranger’s biting remarks, every projected whisper, every failed outing. I reminded myself that it was OK, because this pain would make us better people. We were going to be better than these other people. Kinder, more compassionate, more aware, more enlightened. This was a journey that would gift us moral superiority.

The thing is, I did not understand this quote. I rather egotistically misinterpreted the quotes usage of better to mean “of a more excellent or effective type or quality”. I now know that I was wrong. There is another interpretation of the word better that fits much more accurately; Better“partly or fully recovered from illness, injury, or mental stress; less unwell”.

Having a child with “special needs” is making us better people in the truer sense of the quote. It is making us well. It is forcing us to really look at ourselves and to confront the truths that we do not want to see. To see the needs that we do not want to acknowledge, and to heal them.

It is in becoming advocates for this tiny being that we are forced to finally learn to become advocates for ourselves and, maybe most importantly, advocates to ourselves. So here I find myself, on the journey of becoming a “better” person, at a crossroad. His need or my need. Normal or special. Normal or different. Shame or wellness.

I am a special needs mom.

Originally published on the author’s blog