Category Archives: Autism

But Momma I Dont Want to be Kind

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Phoebe Fish FaceShe was still clutching her lovey. Her long ginger curls were tangled and falling around the shoulders of her nightgown as she quietly entered the room.

Her younger brother, already involved in play, looked up from his cars and loudly exclaimed “Good morning!” She rolled her eyes and kept walking.

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Mom was nearby and in a flash she was there, challenging the five year old to find kindness in her heart and respond appropriately to her brother’s greeting.

An epic stand-off ensued. Allowed some time to sit nearby and choose a change of heart, she was not budging.

But Momma was not backing down either.

After a few tears and a stretch of quiet time in her room, she returned and managed to speak to her brother with respect (if not enthusiasm). Momma hugged her briefly and asked what she’d like for breakfast. It was a lesson and it was done.

The stubborn momma is my daughter.

Honestly, I busied myself nearby as I mentally composed a short list of compelling reasons to justify my granddaughter’s annoyance with her autistic brother. It’s honest to say that he is not always easy to deal with. I was privately tempted to defend her response.

But if not at home, where? Where will she learn compassion if not by example and through practice in the safety of her family? Where will she learn to treat outsiders well if she hasn’t learned at home with the ones she loves?

If not now, when? She is most teachable in these formative years.

If not by the teaching of her mother, who? Her momma loves her fiercely, and is her first and best mentor.

Fix these words of mine in your hearts and minds; tie them as symbols on your hands
and bind them on your foreheads.
19 Teach them to your children, talking about them
when you sit at home and when you walk along the road,
when you lie down and when you get up.
Deuteronomy 11:18-19

It would have been easy in the newness of the day to ignore the roll of those blue eyes. There was breakfast and two babies to feed and her coffee was cold again.

But Momma knows…

  • At age 5 her little girl is old enough to know that kindness is a choice.
  • If her daughter doesn’t exercise extending kindness at home, she will struggle with being kind out in the world. She wants her little girl to be the one to say “Come play with me!” to the lonely or the new child in class.
  • There are even times when love is a choice.

This molding of hearts and pointing tiny faces to Jesus is exhausting and no one would have found fault with the omission of consequences just this once.

But momma knows that the hard work is best done early; early in life and when possible, early in the day.

Jesus said, “Let the little children come to me, and do not hinder them,
for the kingdom of heaven belongs to such as these.”
Matthew 19:14

lorraine

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From Out Here: A Grandmother’s View of Autism

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I pen this as an observer; I claim no expertise. I’ve never parented a child with Autism Spectrum Disorder (ASD). I don’t go to therapy appointments, I don’t visit the neurologist or the behavioral specialist and I don’t deal with the inevitable daily challenges of raising a child with a neurological disorder.

However, I love a child with ASD. He’s my grandson.

I also don’t have type 1 diabetes. I don’t prick my finger eight or more times each day to test blood sugar. I don’t position a spring loaded device on my belly and push the button to insert a cannula to deliver insulin – to literally keep me alive. I’ve never woken from a diabetic coma, surrounded by paramedics and feeling rotten. I’ve never been hospitalized with Diabetic Ketoacidosis.

But I love a man who does, who has. He’s my hubby.

It’s been a journey. So here I am, twenty years after his diagnosis, still clumsily discovering how to be an encourager and advocate while maintaining my primary role as wife and lover. I avoid being the “diabetes police” but I’ve said the wrong thing and responded in the worst way when he most needed compassion.

diabetes-528678_1920I cannot express the highs and lows (no pun intended, but it’s so true) of dealing with diabetes. You can do the same things day in and day out and get wildly different results. Just last Saturday, the excitement of finishing a 5k was clouded within minutes when his blood sugar reading was high. There is big potential damage to vital organs from exercising with high blood glucose. But there are so many factors outside of his control, and virtually none within mine. There were many emotions that surged, from aggravation to fear, but the truth is that you just deal with the present. Adjust, course-correct where possible, and keep living life with this person I love with all of my heart. I wouldn’t want it any other way.

ASD makes normally simple things hard for our boy. He struggles with waiting. Changes in routine are upsetting; he doesn’t like to share certain toys and he’s not especially affectionate. Many times he’d rather play alone than with his siblings. Some days are just hard for him to deal with normal stuff.

He’s learning and developing skills to cope through therapy and the efforts of his parents. They are his champions.

 

Watching him run and play outside makes my heart soar. He’s brilliant, this little guy. He loves books – he will sit with anyone who is willing to read. When he is having a good day, he is delightful. His joy is pure and wild and unfiltered.

Since his diagnosis he has made significant progress. I have high hopes for this boy, confident that he will reach his potential because he is surrounded by people committed to building a strong foundation.

So here I am, clumsily discovering how to be an encourager and advocate, while maintaining my role as his grandma and my daughter’s mom. I am not an expert on ASD and I’ve said and done the wrong thing. I’ve responded with impatience when I should have been compassionate. I’ve already made some monumental blunders in dealing with him. Without a doubt, I’ve annoyed his parents by saying the wrong thing or reacting inappropriately to his behavior. I’ve misunderstood and been misunderstood because I didn’t know enough about his symptoms and limitations. We’ve learned to extend grace to him and each other.

I don’t know what our sweet little grandson’s experience will be. I’ve read lots about autism, pretty much everything I can get my hands on; I listen and ask questions of his parents. And what I’ve learned is to expect the unexpected. The things that worked yesterday (or the last time that we were together) don’t always work today. Regression can occur and expectations have to be adjusted. But at the end of every day, the little boy who lies down (possibly after jumping in his bed for a bit) and sings himself to sleep is a gift from God, fearfully and wonderfully created.

I praise you because I am fearfully and wonderfully made; your works are wonderful,
I know that full well. – Psalm 139:14 NIV

May we ever grow in compassion and joy for every life.

April is Autism Awareness month. The Autism Society has issued a challenge of sorts. Awareness has been mostly achieved, so they encourage friends to become partners in the movement toward acceptance and appreciation. During April I’ll share some ways that you can take that next step.

Autism

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