This could be the worst decision of my life

It really could be, the worst decision of my life. But, I get the feeling it’s not.

I don’t often speak about my journey as a special needs mama.

That’s mostly because I don’t think of myself as one. Orrr I have spectacular denial. Lately, I have realized that the latter is very true.

This is both really good and REALLY bad.

Some history

Two and a half years ago we finally sought help for both ourselves and our middle son, Knox. Our lives were chaotic and we felt helpless, scared and overwhelmed. He had missed so many milestones and not one of us had slept for more than forty-five minutes at a stretch since he was born three and a half years before that.

There are reasons that sleep deprivation is used as a torture tactic. And we felt it.

He was three and a half. He couldn’t speak. He would bark the odd word, but mostly used guttural roars and growls to put his point across. He wasn’t eating solids. He was WILD. Destructive and hurt himself, allot. And occasionally others. Never intentionally. And then struggled deeply with the panic and shame he felt at having cause pain to people he loved.

He was MADE of noise. Constant noise. He craved and needed it like air. But at the same time, became sensitive to it and would spin out of control and rage at the tiniest of noises, when the tides turned.

The rage. It was always moments away. White hot bolts of anger and that cannoned from him and exploded into our world like Thor in a lightening storm.

He couldn’t be left alone for a minute. Certainly not with his baby brother.

Pee breaks were a total luxury.

Our world hurt. So did his, literally. His siblings were frayed. Honestly, mostly frightened of him. And our marriage was under constant attack from an utter lack of time to work on it. Our family was much like many other, pre-diagnosis of Autism Spectrum Disorder. Broken.

Some truths

Our middle man is incredible. He is a pure heart. Literally. He is made of LOVE. Fierce, raw, all-consuming love. He is thoughtful and kind. He has insanely good construction and 3D perception skills for a five-year-old. He is spectacularly loyal.

He is also wired differently. Very differently. Processes the world counter to most of the rest of his family/society, and it’s something we are beginning to embrace.

 

“Why only now?” you may ask. He’s had his diagnosis for a few years.

 

Well, with his diagnosis came options as to how we would cope. First in the initial stages, and then a longer-term plan.

His diagnosis, as with many families, was pretty up in the air and iffy, as the Autism Spectrum is so vast and has such a huge range of co-morbid conditions that can align with it, we were told that we would have to “see in time” what surfaced.

Also, further, more conclusive diagnosis involved some pretty unpleasant tests, and we were just not willing to  put our baby through that, with the possible outcome still being “We have no clue, coz it’s all so confusing” – which is what I feel like our Doc often wants to say to us.

It was settled on that these were what we had to work with: Autism Spectrum Disorder. Anxiety Disorder. Sleep Disorder.

For which medication was suggested. We were SOOOOO against medicating our children, ever. But when your baby is a danger to himself and others, and you literally haven’t slept in years (this is no meme’d exaggeration) It becomes necessary to consider it. We decided to enter the initial phase, and had agreed that we really didn’t want this for him long-term, but for just then.

It seemed the only rational way.

And so, we began a chapter in our lives in which we watched our son slow down, take life in.

Sleep.

I stood and marveled in total exhaustion and disbelief at him, still in his bed, hour apon hour at night. It was about as close to a miracle I could have imagined at the time.

We all rested, recovered and began to find our feet in this new world.

I remember watching him bite into, chew and actually eat slowly enough to TASTE his first cheese sandwich. He was like a tiny stoner, post joint snacking.

Muttering “so good. Best. So good” to himself and nodding slowly, like an old restaurant critic.

Our wildling was becoming domesticated.

In time he began to use more words, and join them together and the growls were stored away for games and silly fun. In the last year, he has done well at our homeschooling routine. Learning his alphabet, numbers, amazing facts and info about his passions and the world around him. He has blossomed.

And so, we’ve just carried on this way. In the “initial phase” mode. And each time we could see his meds losing efficacy as he grew, we’d see the doc, check in on his progress, and up his meds to suit his weight. It was so much easier this way. For us.

A few months back I was aware, each time I knew it was time to see his doc that I felt tight, anxious and like I was doing something wrong. Guilt. Lots of it. I knew where it came from.

It was a very primal place

I’ve been working hard this year at self-love and acceptance. Much of which was lacking in part because of my own journey through a childhood of confusion in a world that didn’t accept me, or know why I was “so odd”.

See, it is possible for a child on the Spectrum to get to adulthood and live a ‘normal’ life. Study, get a job, excel at it, have a family, and function like most others. I know this because I am this little girl. And my womanhood has felt so very delayed as I wrestled with the non-acceptance of my difference, by the people who I feel should have been there to walk it with me. Show me, teach me, guide me.

Not just watch me drown in my own stormy waters.

It was then that I realized that I cannot possibly look my son in the eye now, or as a grown man and say ” I love you” and continue the way we were.

I’ll explain

To say ‘I love you” in our world is to mean it. To live it. To BE love. How can I possibly mean it when I no longer know him? When the baby boy I knew (even in that wild and explosive state) is a diluted version of himself? How can he get to manhood feeling accepted, when his free spirit is tempered by my and our fear of his innate power and wildness.

How can I say “you’re enough” and then control his essence with medication? HOW?!

 

How do I know I’m right?

I don’t, but I live inspired to do my best.

I have, for a long while on Social Media, admired a mama called Lisa Eisher @eicherumba. PHENOMENAL Mama of four. Two biological babies, and two adoptees.  Her two bonus babes live with Down Syndrome. Their adopted daughter Sevy who is non-verbal truly struggled to bond with Lisa. Watching their journey has been filled with sky highs and subterranean lows.

What struck me this year was the moment when Lisa realized that she can’t MAKE Sevy love her by trying to turn her into someone she is not. And she threw the doors open for Sevy to be whoever she is in her soul, and MY GOD was the change spectacular. Sevy is one of the most incredible artists I have ever seen. Her pieces are mind-blowing. Her process so inspiring. And the bond between mother and daughter… I cry daily at their posts (ok, mostly I laugh cry, seek them out, they are just an incredible tribe)

Had Lisa not reached that point. No one would know the true depths of Sevy’s incredible nature, her delicious spirit, and her phenomenal talent. Lisa had to let go.

I have to let go.

I have to do all the scream crying I didn’t bother too when we got this diagnosis (because I am a believer that “I’m not my diagnosis/lable” – also, I have fabulous denial skills) and accept that the baby boy I gave birth to is not who I thought and dreamed he would be. He is not going to lead the life I hoped he would. And he most certainly isn’t going to conform to the rules that society lays out for its sheep. He will forge his own path.

I have to let go.

I have to accept that we will be there to guide and teach, but that in truth, he is our teacher. I have to accept that love is his superpower and we need to keep him seeing that love is a virtue he must never give up on it, despite how cruel this world can be to those who don’t conform.

I need to fully embrace what comes next and rise to any hights he flies to, to fly along with him and marvel at the world from his magnificent point of view.

We will never allow our guy to run himself at risk, and so for now, some of his meds will stay. But they are lessening, as we go. With the hope that he will live free of them at some point when he (and we) have the coping skills to tackle day to day life with a sense of confidence and knowing.

This first month of lessening meds has been heart-wrenching. Hard. Frustrating and scary as fuck. But we can do this.

Yes, we are going backward, a lot.

And that’s ok.

He’s forgetting much of what we learned at school this year, and it is so hard to watch him as he tries to wrestle with where his magnificent mind has stored it all. It’s in there, and we will be finding a way to get it all going again really soon.

His words are jumbled. Many come out in a language neither he nor I understand. For that, we laugh and learn a new word, in his language, while I figure out the translation with him.

He stimms constantly.

He’s constantly humming and makes endless noises. Chews on everything and flaps and hops like a mix between a baby bird and happy bunny. He doesn’t know that he does it though.

The truth is, it’s driving us all a tad batty. But stimming calms him, and he doesn’t stop any of us self-soothing, so he deserves the same respect from us.

His pain threshold is super high again, and his sense of perceiving danger is very low, so he doesn’t realize when he is tearing through his own skin, or running himself towards something dangerous (this is where his meds are very useful for now). Being vigilant is thankfully my strong suit and he will learn these senses as we work through his sensory activities again daily.

Regression is always frowned upon.

But I am choosing to see it as a retreat. We need to regroup. Gain our strength and seek a new perspective with which to embrace a life we have been dancing just on the outside of for too long. And do so with grace, love, and acceptance.

I want to know that I have done all I can to help him be all the man he can be. And that my fear never played part in his world.

I want to stand tall in the winds of change and hold him close until he’s ready to fly free. I want to do it all knowing that he is enough.

 

Exactly as he is.

 

I want to ride the lightning because he is the perfect storm.

 

 

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