Family,  Little Brother,  Personal and Spiritual Ramblings,  Special Needs Parenting

Ode to the Neurotypical Sibling of the Special Needs Child

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“Can you get LB for me? He just woke up…” I asked my husband who was climbing out of bed. The sounds of LB’s whiny cries were coming through the baby monitor. I wasn’t ready to get up, regardless of what the alarms on my phone were telling me. He laid the fussy child on my chest. I covered him up with his white fleece blanket and cuddled him close. “Do you need to go peepee? Does something hurt?”

He never answered, but as I soothed and patted, he calmed and melted into me.

He’s a pretty energetic, wiggly child; so these moments happen less and less frequently. But this morning, I could tell that he needed me.

It’s hard to put into words or explain to people that don’t know my boys or live in our home. But the difference in when Ezra needs me and when LB needs me are stark. While an outside observer may see a fussy child on the chest of his mother, one comes with needs that can be filled simply by the soothing presence of his mother. While coming with his own needs, his presence somehow gives back as well.

The other comes with needs in the form of demands – both verbal and non-verbal – that must be met in very specific ways and times. These demands change from second to second, often unknown even to him. The moments that ensue wrought with frustration and anger on both parts. In the end, the child is only mildly soothed and the mother is completely empty.

Not so with LB. If my mama-heart were soil, it would be chronically parched and cracked, weathered by the sun and elements. LB’s essence literally pours refreshing water into my parched and broken places in ways words truly cannot express.

Siblings of special needs kids are amazing: why my neurotypical child is my hero | All too often I really don't know how to love my special needs child as I feel I should.  But all too often I really don't know how to love my neurotypical child as I should either, when I'm so exhausted and overwhelmed and broken. 

I breathe him in and feel immense pain. Not because he is filling me up, but because he is filling me up when it shouldn’t be his place. I am highly sensitive to the needs of the one who somehow manages to hold everything together because it was a position I filled in my own family of origin when I was too young to see or know the toll it was taking.

It’s not fair.

Sometimes I regret bringing him into this world, this home. Not because I regret his life or wish he weren’t here, but because it’s not fair that he should be exposed to so much brokenness, stress and anxiety. It’s not fair that he gets the short end of the stick so many times yet still pours into us with seemingly unlimited resources. I feel like it was selfish of us.

It’s not fair that he feels (to us) like the healer of our hurts, the glue of our brokenness, the oasis in the desert, and the eye of our storm.

No child should have to carry this burden.

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I try to be fair. I try to find other ways to heal and fill and be put back together.

But some days, I need to push aside the alarms and let his tenderness fill my weary mama soul.

I worry so much about this child. Because – while his looks mimic those of his father – his heart, personality, his perfectionism, his musicality, his creativity, his sweetness, his helpfulness, his compliance, his stability mimic my own. He is my mini-me with blue eyes and testosterone added. And it scares the crap out of me.

All summer he would panic when toys came in contact with water, afraid they would go down the drain. In a panic, he became the rescuer. He could not have peace or breathe easy until the toys were rescued from the water.

My heart broke for him because that is me…the rescuer. The one who feels it’s my job to make everything safe and calm for everyone else. It’s a role I am trying desperately not to pass on to him. But too often I fail.

I can tell his anxiety is high when his come-and-go stutter gets worse. No amount of kissing those sweet baby cheeks can really take that away.

He loves preschool. LOVES preschool. I think it gives him a predictability and stability that he needs so much right now. Especially on stressful mornings, I breathe a sigh of relief. Not because I’m getting a break (although it’s part of that) but because he has a safe place that’s all his – outside of the stress of his home life.

He gets in trouble a lot. Which really worried me at first. He has to take trips to “Ms. Mel” the school administrator when he gets put in time out and doesn’t comply. But often the incidents revolve around getting put in time out for, you know, STEALING TOYS.

It’s such a ridiculously NORMAL problem to have. He’s not kicking and hitting. He’s not spitting at his teachers in the face. He’s not throwing furniture. He’s not pushing peers off of playground structures. He’s stealing toys, like 3-year-old boys typically do.

So we talk through why we don’t steal toys and how we use words to ask to play and he’s fairly compliant – and each day I breathe a bit easier because it’s not getting worse. He is dressing himself almost completely independently. He’s DONE with diapers and pullups – staying dry day AND night – something his big brother still can’t do. He wants to brush his teeth on his own and was so compliant at the dentist I felt like I could sit there in a relaxing coma when it was all going down.

Last night, after being completely disrespected by my other child, I went into his room with his cup of milk and asked, “LB, can I cuddle with you?”

He responded, “Sure! Dat’s so nice!” We cuddled for a brief two minutes in which I explained that tomorrow we have to go to the “tooth doctor” and he needs to get some rest. “Okay!” He says. “Goodnight baby…Goodnight Mom!” and that was that. I didn’t hear another peep out of him.

When will I stop being amazed by this smooth sailing?

In spite of the meltdowns, anger, and aggression he sees coming from Ezra – he loves Ezra with a depth that surprises me.

“Is it time to go pick up Ezra?” he asks throughout the afternoon…

And when Daddy comes home at the end of the day, he’s greeted with a loud, energetic “DADDY!!!!” and feet that run to greet him at the door. LB is seemingly unfazed by Daddy’s moods or anxiety – always loving, happy, and receptive to his favorite parent.

All too often I really don’t know how to love my special needs child as I feel I should.

But all too often I really don’t know how to love my neurotypical child as I should either, when I’m so exhausted and overwhelmed and broken.

I hope that I keep the right balance. I pray that he is not irreparably damaged by living in such a stressful environment. I hope that he knows he is loved and it’s okay to not be perfect all the time.

So I’ll keep doing the best that I can – hoping God can make up for the rest. God and extra donuts.

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