How to bring the world to your kid, when your kid can’t go into the world.

Being medically fragile is what led me to home school Parker.

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What sealed the deal was to discover what our local public school system had to offer a typical kid with Down syndrome as far as an actual education goes.  Utah isn’t known for it’s attention to kids with special learning needs.  Just sayin’.

One classroom.  One teacher. (I’m not saying the teachers aren’t great.  I’m speaking of the situation in general.)   A couple of aides most likely recently pulled off the street with little training. Many age levels.  And many a diagnosis.

I believed that Parker deserved more.

Could do more.

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But this all leaves me with a bit of a dilemma.

How do you bring the world to your kid, when your kid can’t go into the world?

Here are a few of ideas I’ve employed:

  • Books

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I can’t begin to list all the things I’ve taught myself simply by reading a book.  Or all the places I’ve been able to visit through the glossy pages of a beloved opus.

  • YouTube
  • DVDs Especially when played on the computer.
  • Get ’em out and into nature.

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  • Field trips to:

The Pumpkin Patch

Cabella’s fish and stuffed animals  (Call to see when their slowest day/times are)

The Zoo (most of the exhibits are outside)

A neighbor’s farm

I’ve been the recipient of a LOT of flack as to how we keep Parker locked up so much.  Some is done as teasing.  The rest isn’t.

This is the thing.  Parker’s first heart cath showed pressures of 117.  We were told (after the fact) that nobody expected Parker to make it through his first year of life. I remember Parker’s Cardiologist telling me that if Parker got RSV that year, and it killed him, not to feel guilty.  Because there was no way he could survive it.

Right before we trached Parker, we were told that this is the point where many families chose to allow their child to pass peacefully away.

We weren’t ready for that, and chose the trach and the vent and have been so grateful that these two options were available to us.

Yup, Parker spent the first three and a half years of his life in his safe room.  Was it hard.  Absolutely.  But is he still here because of that sacrifice?  We think so.

It’s been an often hard and discouraging 6 years at the Hodson house.  It’s  been a sacrifice for our whole family, not just for me.

My goal all along was to keep Parker healthy enough while we discovered the pieces to his puzzle that caused his PH levels to always be so high.

Healthy enough to allow those lungs to grow and take over some work that the diseased parts of his lungs can’t.

This means that we don’t take Parker to Christmas parties, Church, or any other activities where a lot of people are involved.  He doesn’t go to the Mall to sit on Santa’s lap.

You should see the amount of hand sanitizing wipes I go through when we have a doctor’s appointment.  And, nope.  He doesn’t play with any toys in the waiting rooms either.

Taking Parker to the mall this summer to get new shoes was huge for me. We let him hang out with some neighborhood kids on the 4th of July. He even knocked on a few doors this Halloween.

This spring I have more field trips planned.  Especially since he seems to be getting so much stronger.

In my mind’s eye, Parker is healthier because I have been so adamant in keeping him what others have described as locked up.

I’ve worked hard to bring the world to Parker.    This Christmas Parker’s main gift is a sled.  One that he can ride in as I pull all over the neighborhood.  A new way to broaden his experiences in the world around him.

Different parents make different choices.  Some parents would have chosen to let Parker gently pass away.  Others would have sent him to school, and brought him to any and all activities to which they had been invited.

There isn’t a right or wrong here.  Just what is best for your child and your family.  These decisions are personal and should be treated with respect.

What about you?  What are some decisions you’ve made for YOUR child that others have given you grief over?

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