Family Life — 5 Minutes for Special Needs

Family Life



                               

Disclaimer: I am writing this as a woman, so it’s going to have a womanly slant. No, I do not hate men. Yes, I know there are plenty of great Daddies who do a good job of helping out–and I salute you, Good Daddy!

 

I spent the majority of the past 3 weeks in a haze of Christmas frenzy, family, and…trying to avoid the news. I really think if I hear the word “Fiscal Cliff” one more time, I may have to go find it and fling myself over it!

As I was driving this morning, I thought of something.

 

We live in a pretty great country. I mean, I am as patriotic as they come. I cry during the Olympics. I get goose bumps when someone sings the National Anthem well. I even teared up when I was voting. You know, it’s just my thing.

However, if I may say so, I think the way we get people elected is ridiculous. A person has to be worth 570 bazillion dollars to run to begin with. Then, sh can’t really say what she wants, because she doesn’t want to make anyone mad. He makes promises that he can’t keep. So, we have a boat load of rich folks, who’d rather be on a yacht somewhere, making decisions for…me.

Now, if things went the way they should…a bunch of Moms (and probably a few Special Moms too!)  would run this country. Seriously.

  • A mom can balance a budget. So what if you have to eat beans and rice for dinner the entire last week of the month…be glad you get food at all, there are starving children in Africa.
  • A mom wouldn’t deal with the bickering and fighting. She’d send one to that chair and one to the other chair and threaten to ground the offenders until they were Yoda’s age.
  • If anyone showed up late, a mom would pitch a fit and demand to know what was more important than showing up on time, because that is disrespectful!
  • A mom would make everyone hand write thank you notes.
  • A mom doesn’t care who is Democratic and who is Republican. Dang it, if y’all can’t get along and be nice to one another, you’re getting your mouth washed out with soap.
  • And don’t let her hear you talking bad about the President. She may not agree with him all the time, but that man deserves respect, because he is the President of the United States, and you will remember that, Missy.
  • A $9000 party dress is not necessary. Mom can run to TJMaxx and find a perfectly suitable dress, shoes, hosiery  earrings, necklace, bracelet, purse, and a curling iron and not spend but $29.99 (See also: balancing the budget).
  • A mom would make sure everyone called their Granny on holidays. Or whenever else she says you need to call Granny.
  • Who cares where you went to college? You went, right? Momma says that the guy who graduated last in his class in medical school is still called Doctor…
  • If you lie, you fry.

 

So, as you can see, I’ve lost my mind over the holidays and I think far too much about things that I will never have any control over.

I wish you all a Happy New Year…may 2013 be the year of change, hope, and love for us all!

 



                               

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Christmas Wonder for My Kids with Down Syndrome

This year, like the past seven, we’d been telling my live-in-the-moment Boys (identical twins with Down syndrome) for weeks that Santa Claus would soon be paying us a visit and leaving toys under Christmas trees all around the world for good little girls and boys in honor of Jesus’ birthday.

“Why?”

Because Jesus is all grown up and doesn’t want toys anymore but He remembers how great it was to get presents when He was a kid so he decided to share His with all the children who listen to their Mommies and Daddies. I got an “Oh yeah? That’s nice, Mom” look and then they went about their business unfettered by the information.

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Attitude Adjustment

Happy November, Friends!

(How did this happen? Wasn’t it just January?)

The past few months have been sort of rough for us. For some reason, it seems like everything we’ve done, or tried to do, went horribly wrong. When things don’t go the way I envision them, I tend to get–shall we say–moody? Maybe not moody, but it makes me upset, because I am such a perfectionist (character flaw) that I want everything to go just the right way!

Boom. It hit me.

That is how it is to be our children. I’m sure that, somewhere in their bodies, they think “I want things to go right…for once!”

We focus so much on how to make the world better for them…and I think we sometimes forget to acknowledge the difficulty and emotions they must conquer daily.

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How to Hold it Together When the World Falls Apart

Hi you guys!

This is basically my week again…only different surgery on the stomach…I’ll update you later…

 

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I get tired–the kind of tired that makes your bones ache.

Sometimes, I get grumpy too.

Hey, don’t we all?

In this ever-winding road of special needs parenting, I find myself often in a place of worry—of frustration.

Nothing seems to go right. Ever.

If there were 2 possibilities–say, vanilla or chocolate–Jack would somehow end up being banana. Even if there was no possible, plausible way for that to happen, it would.

So, you would think that I would be surprised when weirdness happens.

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The Chicken

Life sucks sometimes, right?

Yeah.

In the past few weeks, lots of heavy stuff has been going on (in my world and in the world at large). We’re still having testing done on Jack for school. My daughter is hormonal and vacilates from angel to devil in mere moments. I’m struggling to muddle through my final classes while taking care of Jack’s needs, my family’s needs, and still act as taxi driver, head chef, and laundress. If I see one more political ad, I might break the television.

So, I snapped.

(Do you know the story of Beyonce the Chicken?

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Testing….

Hi there! Remember me?

(don’t answer that…I’m beginning to feel a foreigner in my own land!)

 

So, here’s the current score. School District: 5, Jack: 3.

It’s looking rough out there.

His IEP was completed a few weeks ago. Because he turned 6, he has to be “transitioned” from the developmental delay label to something else. So you know what that means?

Testing.

Lots, and Lots, And LOTS of testing.

We’ve had 3 speech tests, an intelligence test, and today we’re going to the psychologist to have another battery of tests. Add to it physical and occupational therapy evaluations, and you have…

One.

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Being the Parent

I sat in the developmental psychologist’s waiting room just simply observing the behavior of the parents. Some were busy filling out paperwork, one was reading a book, another was totally in to playing Angry Birds. Not a single one was watching their child.

I watched these children, who were obviously there for a reason, as they screamed, hit one another, and ransacked the poor bookshelves—while the parents were oblivious. You know, because Angry Birds is more important…

One mother (the one filling out paperwork) finally looked at me, who was staring at the child who had a hold of another child’s ponytail, and said, “You know, I try hard.”

I gave her a nod and a smile and continued reading to Jack to keep him calm.

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Hospital Homebound

School.

It’s happening around here. Some of the counties near where we live have already returned to recess, brown bag lunch, and smiling teachers. We…start Monday.

Well, my daughter starts Monday. My friend’s children start Monday.

Jack. Not so much.

See, we qualified for Hospital Homebound (HH). Basically, this is a school within a school. It has its own principal, teachers, guidance counselors, etc. Three times a week a teacher comes to my house and hangs out with Jack. Speech therapy and Physical therapy will visit him at home as well. However, it’s under the confines of the MotherSchool, which is the elementary that we are zoned for.

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Always Sad to Say Goodbye

The child reminded me of a poignant moment from her babyhood the other day. She was maybe three years old at the time, and still very much a baby with her speech  and social delays. I was with her at our church for some reason – going to a meeting or something and she was holding her favorite little super ball. It was clear rubber and had a bright pink sphere with a happy face on it. It was one of her favorite toys to carry around. It took me a few seconds too long to open the door and she got frustrated and threw her ball.

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The Bubble Bursts…

Sometimes, I lose my words.

Like someone popped my beautiful bubble that I worked so hard to get right.

Or I feel like the sky is closing in on me.

Actually, I feel like I’m the kid with the black cloud that only rains on me.

(Pity party, table for 1?)

So many times, on this journey, I have these huge highs….that are followed by the lowest lows. I fight hard, I play hard, I love hard…and then I get kicked in the teeth.

 

YAY: the insurance approved the wheelchair!

BOO: they’re not sure when we can actually have it (4-12 weeks is the estimate).

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