Grandparents — 5 Minutes for Special Needs — Page 2


Thank YOU!

You know who you are… your the mom that most can’t relate to, the mom that takes her job seriously.  The mom that’s misunderstood more than understood.  The one that stands up for what’s right and wrong.  The one that is the child’s first teacher and strongest advocate.  You are the REAL EXPERT of your child.  You know it’s going to be a bad day long before the weather report comes on.  You don’t need a crystal ball to see how things will turn out…you’re the one on the side lines with a camera snapping pictures as fast as the camera will let you…because you don’t want to miss anything! 

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Friendship Road

Since we’re walking through another season of learning curve, this time related to my mother-in-law’s needs, I have been realizing again the importance of friends…and not just any friends, but friends who really know what you are going through. For us, this is not just people who have taken care of an aging parent, but people who have done that in the context of parenting a child with special needs, and their siblings. We are fortunate to have a couple of friends who have walked this path before us, so we can learn from their experiences and glean from their wisdom.

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Mildly Concerned

I’ve just about decided I don’t like the word mild – except as it relates to cheddar cheese and salsa. Mild should come with a warning label…

I believe I recognized the signs of “mild” cognitive decline due to dementia in my mother-in-law a couple of years ago. Although I did what I could to point them out, the symptoms and effects were minimal and it was easy to do what we could to cope and just move on. There were other possible explanations. There were more pressing matters (like infant twins and a newly diagnosed autistic daughter). Now we have almost reached a crisis point, and I am wondering if I should have pushed harder back when things were “mild.”

Some would say that my daughter has a “mild” form of autism.

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Just Venting…

For the first time since writing for 5 Minutes for Special Needs I am at a bit of a loss of what to write. Often I know days in advance what I will write, and it becomes a finely crafted piece before I hit publish. Usually at some point on Tuesday inspiration will strike and the words will flow. Not so today. We are removed from home for Spring Break, out of our regular (somewhat crazy) routine and into a wholly different “doing what we can when we can” scenario. Today is the second full day of visiting Grandma. In case you missed it, you can read about the beginning of why that matters here.

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When she won’t hug Grandma

We flew 8 hours with 4 kids and umpteen bags across the country to visit Grandma. Within 2 minutes they’d already hurt her feelings.

It’s always been stressful to balance the expectations of extended family and the needs of my two older girls, adopted as toddlers from foster care. Both their difficult history and their bipolar diagnoses add up to one big misunderstanding waiting to happen with well-meaning family members.

They're not always easy to love!

This time was no different. They’re older now, and more socially adept (with much therapy, medication, and practice!) but it didn’t make a lick of difference when we walked in to Grandma’s home and they 1) wouldn’t look at her, and 2) one of them had a fall-on-the-floor meltdown 3 minutes after we arrived.

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Reports from Inside the Sandwich

It’s hard to say when, exactly, we became members of the “sandwich generation.” If I had to guess I would say it started around the time that my husband flew to his mother’s home in order to drive her back to our home so that she could meet our twins. This was about six months after they were born, and just a few days after we had received an official ASD diagnosis for our oldest daughter. As newly enrolled members of the parents of multiples and special needs parenting clubs, too, I don’t think we recognized it at the time. Things have been steadily changing ever since then.
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Learning to ride…one step at a time…

A Cowboy Needs a Horse

Johnny lives in a big city, but has everything a cowboy could want
(Everything, everything)
He has a place to pan for gold
(Panning, panning)
And he has time to shoot a buffalo everyday
(Shooting, shooting)
And every night, he dreams he’s a cowboy riding the rangeFinally found the words to this song, it’s on a disney sing along VHS we have and we sing it all the time.  (well me & Tristan…and he seems to like it 🙂

Ridin’, ridin’ along…

Oh, a cowboy needs a horse, needs a horse, needs a horse
And he’s gotta have a rope, have a rope, have a rope
And he oughta’ have a song, have a song, have a song
If he wants to keep ridin’

Now a cowboy needs a hat, needs a hat, needs a hat
And a pair of fancy boots, fancy boots, fancy boots
And a set of shiny spurs, shiny spurs, shiny spurs
If he wants to keep ridin’

Oh, the fence is long, and the sun is hot
And the good Lord knows that a cowboy’s gotta keep
Ridin’, ridin’ along

So he gets himself a horse, and a rope, and a song
And he finds himself a hat, fancy boots, shiny spurs
And there’s nothing more he needs, or can have, or can get
If he wants to keep ridin’, ridin’ along

Spurs, shiny spurs
Boots, fancy boots
Sings a western song
And a horse
If he wants to keep ridin’, ridin’ along…

Tristan has been working up to the ridin’ for about 5 weeks now. 

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The “Ick”

We have been part of the “Ick” people.  We try SO hard not to get anything.  To not be exposed to any others that are sick, have been sick recently, or that have been exposed to sick.  I know impossible.  But we really do try to stay germ free.  Then it HIT and it didn’t hit gentle.  It took everyone as a prisoner, one right after the other.  My husband I think was the subject that first got the “ick”.  Job hazzard I guess, when you work in a retail store and you help customers, I guess it’s fair that they share theirs with you if you share your knowledge with them. 

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New Groove

I need a sabbatical.  I know from time to time we all need a break.  I’ve taken to calling this much needed break a sabbatical. 

You see life got turned upside down in August.  My mom entered the hospital with what we thought was going to be pneumonia but spent 2 weeks inpatient getting a diagnosis of Stage IV Lung Cancer.  My heart sunk and hasn’t been the same since.  During her stay, my son got sick with pancreatitis from a medication he was on for seizures and ended up inpatient also.  He was in 4 days during her 14 days. 

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Going to the Movies

Traditionally on extended holiday breaks, one (or both) of the grandmas suggest taking the kids to a movie.  It is one of those activities that makes me cringe inside because I’m never quite sure how Will is going to behave once we get there.  Sometimes I opt out all together or just send the girls.

You see….at home, he stands 12 inches from the screen with repeated reminders to sit down, and he runs from the room and hides when he sees something that is scary or when someone is getting hurt.  He loves movies.  On his terms.

But, I’ve been more brave lately. 

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