Day In And Day Out — 5 Minutes for Special Needs — Page 2

Day In And Day Out

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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TRY To Do Some Good Little Thing Just For Yourself

I was saddened to read that Kimberly and her stories about “the child” will be leaving 5MFSN. I totally understand that her To Do list has gotten longer, and more critical, while the time to actually get all those tasks done has gotten shorter. I’ve been there — haven’t we all? Truth is, I’m not so sure I’m not still there.

Yes, I’m also struggling lately with all there is to do. I’m not by any means admonishing Kimberly about dropping blogging. Not at all. In fact, I’ve basically done the same (without outwardly admitting it) for the past 18 months.

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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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Leaps and Bounds in Baby Steps

The Boys are swimming underwater like frogmen. Doing underwater headstands, flips and dive-toy retrieval as well as sporting an admirable breast stroke… though they clearly prefer being UNDER the water versus on its surface. (They get that from Mom and Dad being SCUBA divers, I guess.)  The Boys are competent dead-man floaters (face down in the water, breath-holding). But that won’t help them pass the Red Cross Level 2 swim test OR, more importantly, stay afloat if they suddenly find themselves in water over their heads. They’re confident but careful in the pool; Big Little Fishes improving daily. Two days ago, their “typically-developing” friend Nick showed them how HE can float on his back in our pool.

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The Worry…

***This is something that has come up again this week! While you’re reading and pondering, we’ll be at the doctor…again!

Until next week…

 

 

For almost 5 years, I’ve done a whole lot of worrying.

I worry about germs. I worry about sleep schedules. I worry about doctor’s appointments. I worry about the future.

I think it’s in our nature, right?

I was talking to a friend and she told me that I needed to “cool it with the hand sanitizer” after I watched her kids lick ketchup off the ground.

It stayed with me all day. It bothered me.

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Give ‘Em More Credit… BELIEVE!

You and I know, but does everyone else know? Our kids are smarter than we think. So much smarter than even we give them credit for. WAY smarter than what it says on their report card. And, smarter than any test can possibly measure. I know this… I KNOW IT! And, you know it too!

Graduating Kindergarten: The Big Little Man with the Principal, his gen-ed teacher, the classroom aide and his 2:1 aide.

I just wish everyone else — especially their teachers and the CSE administrators and the critical strangers that we sporadically run into who judge them so harshly — knew it in the same way.

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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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Labels

 

 

Jack met with the developmental psychologist on Tuesday for a few hours. We have been noticing some hard-core aggression along with some other really disturbing “new habits” that have come up in the past few months (for example, he’s taken to not sleeping again, and he’s picked all the nails off his fingers and toes). It was time.

She is amazing.

The office is amazing.

They have an education advocate who comes in to introduce herself and she calls you to make sure you’re getting everything you should from the county (school wise). I nearly wept with joy.

After two hours of pouring our hearts out and her seeing Jack at his absolute worst, I felt like we were actually in the right place, with the right provider for Jack.

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Summer of Independence

It’s seems like only yesterday I was sitting in a small room, with a desk between Zoe’s Doctor and I as I asked him question after question- all of them starting with “ Will she ever..?  And in that moment, instead of feeling tragically overwhelmed- I was empowered.

Finally, I was getting confirmation on something my mother’s instinct had always known. I was getting answers.

Seven years have passed since then, and for the first time, in a long time- I find myself starting over asking questions again, researching and  learning new methods for tackling daily life and Zoe’s physical and medical challenges.

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