Creating a Vision

Some parents want to retain their child because they think that it will “fix” them…

Often, parents who want to hold their child back do so, so that he/she can be the star of the class…

I hope you felt heard, because when parents don’t feel heard, they become militant and make trouble for us…

These words were actually spoken out loud.  To me.

Yes, that’s me you hear, laughing hysterically all the way from Montana.  That’s how funny this is to me.

Maybe the person who uttered those things (the first during the IEP, the second during a conversation at pickup the next day) forgot that I purposefully adopted a child with Down Syndrome.

And I didn’t do it with the intention of “fixing” him.

As if he needs to be fixed.

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Adorbs.

 

The kicker is that I didn’t even make a case for retaining Paul, but only mentioned it when inquiring about their thoughts on his future placements.

After trying to explain several times that if I did want to discuss it more seriously, it would be in an effort to provide Paul with more time to gain foundational skills so that his education can be more fruitful.  What good is it for him to be with a peer group when he all he does is parallel play, with limited interactions with his classmates?  How will he learn how to manipulate small toys, tools or utensils when he is only interested in balls and bubbles?  What chance does he have to learn much of anything when at the first instance of frustration, he acts impulsively and can’t cope?

I still believe I wasn’t understood at the end of the conversation.  I honestly don’t care though. It was very clear that one of two things was happening (or perhaps both; I suppose it could be both):

1.  This person has some extreme experiences or background that is tainting her view of all parents and she is projecting it on me.

2.  She was, perhaps, trying to train me to not speak up much in future meetings to make her life easier.

But, whateves.  Like I said, I’m laughing over here.

It has caused me to think about my expectations, and that’s a good thing.  I’ve thought about them before- for me, so many of my hopes for Paul have already been realized.

He is in a family.  He is loved.  He, in turn, loves.  He knows of God and he prays with us and receives grace.  He receives medical and therapeutic care and is healthy.  He smiles, laughs, kisses and enjoys other people.  He delights in simple things (such a beautiful way to live.)

What a life he has!

But we’re entering into the school world and I guess I just don’t know what my vision is for his education.  I want to have a balance between being realistic and being optimistic.

I know he is behind; I know that even if he was retained at some point, he’d still be behind.  He is the lowest functioning child in his special needs class.  I can see a difference between him and other children his age (or younger) with Down Syndrome.  I expect him to be under our care in some way, shape or form for the rest of our lives.

But does that mean he won’t ever learn to read, even basic words, or just learn sight words?  Will he be able to write at all?  Maybe his own name?  I don’t want to just roll over and let him become more and more behind his peers, because I don’t know and can’t trust what all the “experts” think of and expect from Paul.

Even though my most deeply held and fundamental hopes for Paul and his future are being realized everyday, issues of his schooling and education are also important.  And they aren’t my wheelhouse.  I need to educate myself and create a vision for Paul that is realistic, but also reaching.  Paul has already overcome so much in his short life.  A fear of mine is that people will put him into a box and limit what we can expect for him.  I’m afraid I could be one of those people.  It wouldn’t be the mark of a good advocate.

So that is my task-create a vision.  It won’t be set in stone; it can be fluid over the years, continually being adjusted the more we watch Paul grow up.  Before I even realize it, it’ll be Spring 2016 and we’ll be talking about Kindergarten, which from my viewpoint right now seems like the “big leagues.”

So, wish me luck!  And as always, suggestions welcome!

 

 

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3 thoughts on “Creating a Vision

  1. Brandy Calvert

    I’m tutoring an adult with Down syndrome teaching him to read. As part of my self-education (I’m a volunteer), I bought a book called Teaching Reading to Children with Down Syndrome by Patricia Logan Oelwein. The introduction of the book starts with a story of a child who couldn’t speak being taught to read. He began to speak AFTER he could read. This is not Patricia’s only book and the book gives examples of lesson plans that can be taught at home as well as at school. You’re doing GREAT! Don’t let ’em intimidate you.

  2. Meg Post author

    Thank you! I did order the book from WrightsLaw, From Emotions to Advocacy. It has been highly recommended and should help me learn Paul’s educational needs and create a “master plan” of sorts. At least that is what the reviews tell me! I’ll definitely look at the book you mention when it comes time for reading!

  3. LifeHopes

    I just know that the Holy Spirit will give you discernment in your decisions for Paul’s education and development. But I think you are already in the success camp because, as you so wisely pointed out, he is loved, and loves. This is my number one goal for my children!

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