Our Land: Four Siblings, One with Special Needs

I feel incredibly lucky to be able to type the words that today’s Our Land post was authored by another awesome IRL friend.  Her son Jack (not his real name) joined Tucker’s Preschool Autism Classroom more than a year ago now, I think. I’ve had the pleasure of getting to know her through play-dates, school events, and our so-important-that-they-may-be-considered-lifesaving happy hours (and no, I do not tend to be dramatic, as they really are life-saving, or, at least sanity-saving, in the I’m Not Alone and Thank God for Similar Moms kind of ways).

This PAC mom is not only elegantly learning how to parent Jack, but has three other children to deal with love at home. To say that I admire her is an understatement. I thank her for sharing her story with all of you, here, today.

Our Land: Four Siblings, One with Special Needs

The first thing I noticed was the incessant screaming….it was so deafening.  As if he were in real pain.  He had a very hard time keeping my milk down and his wet diapers were diminishing as days slowly passed.

It turns out that he WAS diminishing.  An ultrasound of my son’s lower belly revealed that, at 22 days old, my third child had been suffering from pyloric stenosis.  There was a growing blockage in his small intestine that was preventing food from passing.

He was gradually starving to death.

After emergency surgery at 23 days old, he quickly put on weight and kept his food down, but his intense crying didn’t cease much.

His screaming frightened my other children. They would get teary and ask me to make him stop.  It was an ear-piercing shrilly scream that would last until the little guy completely exhausted himself.  This happened day after day; month after month. It seemed to last forever.

So, my children’s first impressions of their little brother were that he was LOUD (scary), that he didn’t want interaction from them (crying when they were nearby), and that he needed mommy a LOT (jealously).

As could be predicted and expected, the littlest was excluded from their play and mostly ignored.  I am sad to say, but I know that they truly did not enjoy his company for the first 2.5 years because he was so easily upset by others and his environment. He also was a Mommy hog!  Siblings don’t like that.

Through trial and error, I slowly discovered some mothering techniques that seemed to alleviate some of the discomfort of my colicky baby boy.

He liked to be held very, very tightly – lots of pressure, all over his body.  I also learned that massaging his head and neck with the tips of my fingers was soothing to him.

As time marched on, it became apparent that he had a language delay. However, the pediatrician said to give it more time because he had SOME words he was using.

But why was this toddler shrieking at me multiple times a day?

Oh, and why was he walking on his tip toes so much?

Why was he chewing on his fingers???

As he grew, I would often find him hanging upside down off the couch.  Or touching the top of his head to the floor for more than a few seconds.  It wasn’t uncommon to find him lying on the stairs, on his back, head first.

Clues, pieces of a greater puzzle as to who this baby was and what he needed from his environment…. and from me.

Intervention to the Rescue!

At the age of 2.5 years, Jack was accepted into a special education preschool where he could learn skills that come naturally for other 2 year olds.

HE BLOSSOMED.  The child we knew was transforming before our eyes.

And it happened so quickly.  Jack is now a very happy, verbal four year old with a huge infectious laugh.

Certainly, incredible change can happen when early intervention is embraced and special needs kids get the support they need and deserve.

Teaching Acceptance

If you will, think about how this child’s first two and a half years impacted his relationships with his oldest siblings.  Well, naturally, they didn’t want anything to do with him.  And why should they?

Jack is still the same kid.  His body still needs and craves the same ‘input’ as it did when he was a baby and toddler.

Here is a scenario that occurs with high frequency…..

My oldest son, Robbie, suddenly shouts from an adjacent room:  “MOM!  He just ate the wheel off my favorite car!!  Why did he do THAT!?”

I take a deep breath from the kitchen, as I hear Jack cry.

To Jack’s siblings, his behavior is erratic, disruptive and can be somewhat aggressive.  Many times he is too loud, applies too much bodily pressure to others, and struggles to engage in creative play.

WHY, WHY, WHY IS JACK BEHAVING LIKE THIS? It makes absolutely NO SENSE to Robbie.  They were playing so well just moments ago. How is it that Jack can be playing calmly one minute with his brother and then start mouthing an army man just as they were going to do battle?

Why the sudden need to jump off couches, hang upside down on staircases, mouth objects, and run around our house pounding his feet with the force of a baby elephant?

I have wondered this too, and, through countless Google searches and reading many books to find answers, I have come to my own conclusion that Jack was born with Sensory Processing Disorder (SPD).  He also suffers from anxiety which can affect his ability to play calmly and naturally with others.

Jack’s nervous system receives outside stimuli and is unable to always process it as typical nervous systems do.  For example, sometimes the environmental input is too intense for his nervous system (e.g. lots of people, loud noises, bright lights) and he needs to find ways to compensate for the imbalance his system/brain instantly feels (i.e. spinning around, hanging upside down, applying head and body pressure to others).  He “seeks” out atypical behaviors because he NEEDS TO.  It is his way of trying to calm his system and adapt to his current environment (whether it be at home, at school, at the grocery store).  He can’t help it; he was born this way.

If Jack is to learn to manage and cope with his body’s impulses, he will need the support and EMPATHY of his siblings.

Before they can empathize, they need to understand why Jack is who he is.  That we are ALL different in our six person family and we all need to be accepted for our unique differences, whatever they may be.

Of course, there are wonderful moments where Jack engages with one or two of his siblings, but these moments are disrupted once Jack feels excited by the play, because he will begin to bang his head on another sibling’s body.

I, as their mom, need to appreciate the moments and realize that I, too, have my own coping mechanisms.

My oldest son, who really does want to play with his younger brother, will ask me with tears in his eyes: “Why does Jack bang his head on me?  Why doesn’t he want to play with me?”

ANGER, CONFUSION, HURT FEELINGS

A few weeks ago I had a private talk with Robbie about Jack, right after Jack had unknowingly upset him (I didn’t mention that Jack’s behavior is confusing to me, too, and that it hurts me just as much).

“Robbie, do you want to know why Jack chews on things, bangs his head on your back sometimes?”

“Yes, mama.”

“He was born needing a lot of body pressure.  I used to have to hold him very tightly to get him to stop crying as a baby.  Now, he tries to give himself this pressure when he is either excited (like when you play with him) or when he is anxious or scared.”

“He will learn how to play better, how to play gently with you but he needs your help.  YOU need to tell him “STOP!  That hurts, Jack.”   If he doesn’t stop then you get up and walk away from him.”

Robbie looks pensive, taking in some of what I am saying.

“Robbie, if he obeys you and stops, you could ask him if he needs a “squeeze.” (a giant, pressure-filled hug!)

“Okay, mama. But you know what?”

“What?”

“Jack won’t do these things when he is 6 or 8 years old.  He just won’t.”

My oldest son has FAITH that his little brother will stop these behaviors over time.  I have faith, too.

I have faith that if I teach my children how to effectively and appropriately react to Jack, that he will modify his behaviors to be more pleasing to his siblings.  Don’t all siblings just want to be a part of the play, part of the fun?  No matter who they are and what their disabilities are, all children want to feel included and accepted.  And it needs to start in the home where they feel most secure.  And if they are lucky enough to have siblings close to their age, it needs to start with them.

Which all starts with us, as parents.

Undoubtedly, I will have to have many of these little but incredibly important chats with each of my typical children as they age.  It is how I plan to foster empathy and compassion as things evolve in our home.

I wasn’t born knowing how to parent my beautiful, atypical child.  I am evolving too.

I know that Jack will adapt and change as he ages, as my other children will adapt and learn to appreciate Jack’s fun, robust personality.

For now, we are working on understanding differences and how to respond to sibling’s behaviors.

Just as I had to gradually learn how to mother Jack differently, they will learn how to respond to him and understand him. And he to them.  After all, relationships are a two-way street.

This task is very challenging for all family members but vital to Jack and his siblings.  I believe it will ultimately have the largest impact on their lives as they will grow into empathetic, tolerant adults who have learned by direct experience to never judge anyone too quickly.

My son has taught his parents that many kids need extra empathy and support.

I love you, my little B Man.  You are a gift.

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Aw! (sniff) Here’s to Jack, his three siblings, and his lovely amazing and strong mama who is making the world a better place. One filled with more empathy, understanding, and love. Thanks, IRL PAC friend. Thank you so much.