The Love of a Special Needs Mother is Like the Ocean. Eternal. Exhausting.

Do you hear that?

Come closer.

That’s the sound of my heart breaking.

My son has always loved the ocean. His eyes match the sea, changing from blue to green with the swell of the tide. My love for him is an ocean, an overwhelming force which is sometimes calm and steady, and other times full of conflict.

A mother’s love is like the continuous miracle of the sea. It begins in the ocean of your womb – but there is something unsettling about the way your baby kicks. So fiercely you feel bruised on the inside. There is something willful and stubborn about his refusal to come out. He arrives weeks late, and even then – after almost 40 hours of labor.

Your baby is overwhelming and mysterious and brutal, like the ocean. He screams uncontrollably for hours a day, every day. And you bring him to one specialist after another, to be told it’s “colic.” You are advised that only a “tincture of time” will help.

The Love of a Special Needs Mother is Like the Ocean. Eternal. Exhausting.

Your toddler doesn’t hit milestones, and the pediatrician advises you to seek help. And they unravel the mystery of why your little one tantrums constantly, tears at his clothes, screams at the sound of the blender.

He has “Sensory Processing Disorder” – and you begin your quest to understand the crossed wires of his central nervous system.

You spend your days helping him to make sense of, and feel safer in, his world.

Brushing his body every 2 hours, doing joint compression exercises, assuaging his need to sink his teeth into everything by giving him chewy tubes, letting him roll on a huge ball, and crash into a mountain of supersized pillows, and jump endlessly on a small trampoline.

And at 3, he is now diagnosed with ADHD. And the doctors offer you their prescription pads. And you refuse. How could a 3 year-old articulate to you if medicine was making him uncomfortable?

And so consumed are you with his needs, so absolutely drained, that he is 4 years old by the time you even think about having another child. And your body betrays you, and says, “No.”

You live with that guilt forever.

A few years go by, and the ocean of his psyche ebbs and flows, in ways you can’t predict or explain; sometimes smooth and peaceful, but often tumultuous, and uncontrollable.

Your child fidgets incessantly. Talks constantly. Makes loud, disturbing noises. Climbs, jumps and crashes constantly. Sucks on clothing, fingers, crayons, anything.

The sun “hurts his head.” If he gets any part of his clothing wet, even slightly, he cries.

He seems to have no body awareness, no sense of spatial relations to other kids. Crashes into other children constantly.

And when playing, gets excited to the point of biting. Never out of aggression, but biting makes him the pariah of playground. You mourn that this gorgeous human being is being sabotaged by some internal trigger switch.

You research and find the best pediatric neurological clinic on the East coast, and get on a year-long waiting list.

And at 5, after a week of evaluations, it is confirmed. ADHD, Hyperactivity-Impulsive type. In addition to Sensory Processing Disorder. And they offer up their prescription pads, and once again – you say, “No.” So fearful are you of altering his brain chemistry.

Because he is, undeniably BRILLIANT. Creative. Funny. And you are afraid that medication will dull that brilliance. He is the ocean, untamed and magnificent, sometimes raging and destructive.

He is your fierce little warrior. And you are determined to help him flourish, despite his lettered labels.

Another quest begins.

Martial arts. Supplements. Structure. Lots of sleep. Cognitive behavioral therapy. Classification. Hellishly difficult diets.

You buy $10 socks for your child. Because he needs “sensitivity socks,” entirely seamless – and even then, an invisible piece of lint will send him into tears.

You spend each morning in an exhausting battle to dress him in clothes he can tolerate – because he cannot wear jeans, or buttons or zippers, or elastic around the sleeves. And no shoes ever feel right.

He can still feel the ghost of the tag you cut off of his shirt, the way an amputee still feels the ghost of a severed limb.

By the time he is dressed and on his way to school, you feel totally defeated.

At 8 am in the morning.

You advocate for him tirelessly, through classification and declassification and IEPs and 504s.

The years pass, and some new challenges emerge. When your marriage crumbles, and you are left on your own to deal with this beautiful child, you realize,

YOU CANNOT.

You are so depleted just surviving, you no longer have the energy to deal with his needs – which have grown so pronounced.

The hour of homework, which takes four. Sending him upstairs to shower, only to find him un-showered an hour later, lost in an imaginary world.

The morning dressing battles. His lack of spatial awareness, the constant clumsiness and touching and fidgeting and noises. His lack of social cue awareness, his inflexibility, his fixations.

YOU GIVE UP.

You hear yourself tell your friend, “I can’t raise him.

Why can’t he just be normal?”

YES. YOU SAID IT.

Not caring if she or anyone else judges you. For no one could possibly judge you as harshly as you judge yourself.

And now, his therapist says, “We must have him evaluated again. I’m fairly certain he has…”

You say it with her.

“ASPERGER’S.”

Because you knew.

And you’re drowning now, in an ocean of pain and despair. Unable to face yet another quest to unlock the mystery of this latest diagnosis.

Wondering how you can afford thousands of dollars of tests your insurance doesn’t cover; how you both will survive the nightmare trial and error of endless drugs and endless side effects.

How can you possibly keep him afloat, when you are sinking fast to the bottom of the briny deep?

You look up furiously and demand that God explain why he did this, when all you’ve ever wanted for your child was for him to have a better childhood than yours.

And then, you spend the perfect Saturday together. And you are reminded of his brilliance. His humor. You laugh together, all day.

That evening, you both snuggle on the couch. While you write this, his story, he reads.

Every so often, and for no reason at all, he looks up over his enormous library hard copy of War And Peace, just to say,

“I love you, mom. So much.”

You may be drowning, but he is not. With his beautiful spirit, endless compassion, soulful heart, keen wit – he is simply adrift.

And you will fight for him, as always. You will figure this out.

Yes. The turbulent waves of your uncertainty sometimes rock with indomitable fury, pushing away, only to crash and break, but he is the shore that grounds you. Your love for him is like the ocean; endless, chaotic, fickle, and profoundly deep.

And there is nothing more beautiful than the way the ocean always returns to embrace the shore.

The Love of a Special Needs Mother is Like the Ocean. Eternal. Exhausting.

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One thought on “The Love of a Special Needs Mother is Like the Ocean. Eternal. Exhausting.

  1. That was Lovely…I though you were in my head for a moment…I have shared this on Facebook page. Thank you 😀

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