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Labor of Love

Fierce loveBy Cathy Jameson

Ronan’s brother and sisters started school last week.  With all of the siblings back at school, it’s gotten a lot quieter in the house.  They’re up and out earlier and don’t return for hours and hours.  Ronan’s getting used to it.  I am, too. 

I cried after I dropped off the younger crew.  I wasn’t even out of the school driveway when the tears welled up.  Not until I dropped them off and drove away in silence did I realize how much I was going to miss them.  I hear stories of Moms begging for the school year to begin.  I’m not one of those moms.  I love having all five kids home.  I’m grateful how caring and understanding they are toward Ronan.  It makes me happy when we’re together.  My kids are fun and can be really silly.  I am in awe of how creative they are.  But before you think it’s all sunshine and rainbows all of the time around here, it isn’t.  Especially on a school morning... 

Even after years of practice, we still do our classic mad dash to get out of the house on time.  I’m glad that no one ever witnesses that – that part is not pretty.  Missing P.E. uniforms, mix-matched socks, and forgetting to pack up the night before can cause some serious delays.  On those mornings, we rush, rush, rush hoping not to be the last ones in the carpool line. 

Some days, though, when they’ve managed their time well, my typical kids are actually waiting for me.  I’m proud of them because at some point each and every morning, I walk away from them.  After all the book bags and lunchboxes are packed, I turn my back on them. 

Tiptoeing quietly down the hallway, all my energy gets focused on Ronan.  On any given morning, not just school mornings, Ronan remains fast asleep much longer than the rest of us.  On school mornings, we let him sleep until just few minutes before it’s time to go.  It isn’t the best strategy, but he needs all the sleep he can get.  Snuggled deep under his covers in a heavy slumber, Ronan would sleep all morning if allowed.  The kids know this and hate that we have to rip him out of his bed so I can get them to school on time.  CJ cars

Seeing how exhausted he will be even though he’s slept for 10-12 hours, they express just how unfair life can be for their brother. 

Mom, we should have let him sleep longer. 

He’s gonna be SO tired today.  

I’ll grab his blankie in case he falls back asleep in the car.

Sometimes, he will fall back asleep in the car.  I’m glad for that, and so are the siblings.  Even as young as they are, the kids are very aware of their brother’s medical conditions and how much of a domino effect each can have on him. 

On a good day, things are good.  We are ready.  We are on time.  We are full of energy – Ronan included.  But, the other days?  We don’t always make it to school by the first bell.  Some days, the alarm hasn’t gone off.  Some days, I don’t have my act together.  Some days, the children dawdle.  Some days, Ronan refuses to get out of bed.  On those mornings, you might find me rushing the kids to school in my pajamas.

Cj mugIf anyone is looking for me today, here's a mugshot. With that smile and that wild hair, I look just like her. If you put her in Mickey Mouse jammie pants - which I wore into the school to drop off kids because we woke up so dang late today, well then, she looks 'zactly like me.

Once I get back home from dropping off the kids, it’s time for Ronan to start his day.  Meds, supplements, and a hearty breakfast are first up.  Then, we get to work.  First on the list are the ADLs (activities of daily living).  Ronan’s not a big fan of those.  He has fine- and gross-motor delays.  What you and I think are simple tasks are quite complicated for Ronan.  Brushing hair.  Brushing teeth.  Clearing dishes from the table.  Sweeping the floor.  Most children can start working on those skills – and are able to perfect them - at an early age.  For someone who has low tone, an energy deficiency disorder, convergence insufficiency, and right-side weakness like Ronan does, these tasks are never preferred.  That’s because they require motor planning, eye-hand-coordination as well as the desire to attend to them.  When Ronan has zero energy, even after sleeping through the night, he can struggle with the most simplest of tasks.  It’s taken a lot of work, encouragement and years to get Ronan to want to do them, but happily, some of that hard work is paying off. 

Ronan has finally learned how to brush his hair. 

He’s getting better at brushing his own teeth. 

He’s completing simple chores around the house with fewer escape behaviors. 

Of course, Ronan would still much prefer someone else do things for him, but he’s learning how to take care of his hygiene as well as contributing to the household.  Not only that, he’s accepting that there is a routine and that it must be followed.  That’s making life a little bit easier for both of us. 

Once those tasks are complete, it’s time for Ronan to get ready for school and therapy.  More tasks to complete.  More non-preferred activities to tackle.  More frustrations to face.  More encouragement to offer to help Ronan make one small step praying it leads to another small step.  With the lessons and activities presented to him, Ronan works on closing the gap and building more skills that we pray will lead him closer to independence.  He does that in a variety of ways over the course of the day – through special education lessons, through several therapies, with various providers, and with a whole bunch of hope fueling each and every endeavor.  When his schooling is done and when his therapy ends, it’s back to just me and Ronan.  While we are home in the quiet of the house, his brother and sisters are working on their academic skills elsewhere.  He looks for them and waits so very patiently for their return. 

When I pick them up from school, and before we’ve left the school driveway, just like last school year and every year prior, one of the kids is sure to ask, “Mom, how was Ronan’s day?  Where’d he go?  What did he do?  Did he learn anything new today?”  I fill them in with the good, the bad, the sad, and the exciting:  Ronan learned how to tuck in his chair at the dining room table!  Ronan knew what the word rare meant!  Ronan sat and listened to FIVE chapters of Stuart Little today!  Then he correctly answered questions about the story, too!  They love to hear the good news and are full of excitement and praise in their replies.  They don’t love the other updates when I offer them, especially when they find out that Ronan had a bad day.  Their sweet smiles fade.  Their expressions change.  Their responses are shorter and much quieter.  “Oh, that stinks.”

As we head back to the house and gear up for homework, afternoon chores, and our evening routine, the kids scurry about the house again.  Filling the house with their activities and their laughter, it feels like a full house again.  From start to finish, each evening is packed.  At the end of the evening, we take time to slow down, to settle down, and to pray for a special intention.  Each night, Ronan’s younger sister prays “…for Mommy and all the work she has to do with Ronan…”  She, and all of Ronan’s siblings, see just how much it takes to keep their brother, healthy, safe, and happy.  Her simple prayer is constant and usually the last thing I reflect on as I wrap up my long day. 

Not every day is perfect, but I fall into bed thankful for the very full days God grants me.  I got to be Mom to five amazing kids one more day.  I got to serve their needs one more day.  I got to love them more today than yesterday.  It doesn’t matter what kind of day it was or what kind of day tomorrow will turn out to be, I promise that I will do all that I can and all that I must for these kids of mine. 

Cathy Jameson is a Contributing Editor for Age of Autism. 

Comments

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Gayle

God Bless you and your wonderful family! You are the greatest mom they could ever have wished for! Your posts always give me support in our long journey with our special children with autism.

Morag

Thanks Cathy ,really heartwarming article to read and love the picture as well .
Fire Brigade families learn very early on to be thankful and grateful for every raindrop and teardrop along the way ,as there is no space ,time, or room for either in the middle of a kitchen with a chip pan fire going full blast !.
If ye need help and ye shout help ye'll get nae help ,so if ye need help don't shout help shout "Fire" then ye'll get help .
"Aye ready , Aye laughing"

MamaBear

You are living the adage, "Every day is Mother's Day." God bless you!

4Bobby

Great post!

Dana

Beautiful post. Thank you!

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