Wednesday, May 25, 2011

 To enlarge his world

This summer will bring a change in our routine. 

We are excited, and looking forward to many plans.

I also have to be honest and say that there is a bit of trepidation for this mama when she thinks of all that is coming in a couple of short weeks.

See, we didn't fare so well over spring break. And as the days of no school and a house full of boys went on, it hit me head on that this was just a very small taste of what our summer would be...

And it was with a guilty taste in my mouth that I realized that my time with just two boys for 7 hours was quite comfortable, and that I wasn't 100% looking forward to our summer {hangs head} ...

I love these boys and I do cherish my time with them. But boy oh boy is it alot when from sun up to sun down I am dealing with... ya'know SON up to SON down... Lots of SONS.

K will be starting physical therapy twice per week this summer. He has had a couple of years off from private therapy, as he has received it form school. However, we have noticed a bit of regression in his walking this past month. We think it may be due to a growth spurt, and his gross motor skills not really knowing what to do with that. So we are being proactive and investing in some intensive therapy for him. This alone will be adding alot to our days.

Of all that we will be doing this summer;

zoo trips

potty training

camping

taking lots of pictures 

swimming in our back yard pool

family reunion

potty training

going to the park

not going insane

potty training (you get the idea)...


I see one big purpose emerging from all of the other activities on our summer to-do list.

That is: making K's world larger.


You may wonder what that means. What does that involve? What is the purpose?

Well, if you are wondering that, then I am right there with you. I can explain what I mean by the statement of "making his world larger" - but as for the practical application of what that is going to look like for us, for him, for our day to day lives - I'm not really sure yet.

We had K's IEP (Individual education plan) a couple of weeks ago. This is a meeting with his therapists, teachers, and principal, to discuss how he is doing and what steps we should take for his next year of education. We got some very positive feedback at that meeting. He's doing well. First grade work has not been a piece of cake for him, but he has made us so proud in working hard and keeping up with a regular first grade class room (Way to go little buddy!!!). 
Typing that sentence nearly takes my breath away as I remember his fight for life and the lack of expectations from doctors. Yes, God is good. All the time.

As our IEP meeting went on, we began receiving very consistent feedback, as to areas that K was struggling in, from each person in attendance.

"He's doing great with his reading - but he doesn't seem to be comprehending what he reads"

"He's a joy to work with, but his reading comprehension is way below that of the rest of the class."

"He's keeping up with everyone in just about every area! - But his reading comprehension is not where it should be."

Okay. So we are getting this. We are processing it and trying to figure out what is going on in his brain.

Then Dave makes this statement that pretty much nails it. Everyone is amazed at his insight (including me!), because suddenly this "wondering"; this missing puzzle piece appears through his words.

"He doesn't have a point of reference for most of what he reads. It's like his camera doesn't have film in it"

Ding, ding, ding! And the light bulb moment commences...

See, alot of what K is reading has to do with team sports

Or running around outside
Or going to the grocery store...

K can only see arms length.  Even with his glasses on and all the help the medical community can give him. He is considered legally blind. I tend to hold that term quite loosely, because I have experienced him visually deciphering things pretty well.

He is the only one who truly knows what he can see at arms length. It may be blurry shapes and colors, it could be fairly good depictions of what is truly there. 

We also know that his hearing isn't exactly as it should be. He hasn't been tolerating his hearing aid well at all lately.

I say this because that makes his world really small.

He doesn't run. He doesn't play sports. And he only knows what is right in front of his nose. That is why he loves his special movies, computer games, and his play-list so much. 

It's familiar, 

It's right in front of him.

And it's his world.



You know how when you read, you always have a running picture in your head of what you are reading? You read a sentence about a woman taking a walk in a field of wildflowers and you envision brilliant flowers, green grass, bright sun, maybe even the clothes the woman is wearing. You can almost smell the flowers or feel the warm sun on your back...
He doesn't have these points of reference - thus, his camera with out film. The skill of reading has come fairly easy for him. But they are empty words with out the experiences to attach to them.

So guess who has the privilege of making that world broader?? Yep. We do. :)

As I said, I am not sure what all that means.

How do you bring the world to someone who can not see well, can not experience it fully, and who has begun to limit himself to what is familiar?

Well, as much as I don't know all of the answers, I know that this is a special responsibility given to us and our God will be gifting us with the wisdom needed for this task!

Look out world. I'm about to bring you to my little boy!

6 comments:

Katarina said...

What a whirlwind adventure for your family this summer. Can't wait to *see* everything you'll be doing. Praying that God will continue to work wonders in K's life as you try to give him the bigger picture of his surroundings.

The Sneaky Mommy said...

Wow--your husband's statement just popped out like a little piece of illuminated wisdom straight from God! Praying for much wisdom as you bring life up close and personal in a whole new way for your little guy! (Hopefully the "nature" side of life and not the "potty training" side of life!) Can't wait to see what happens!

Nikki said...

Oh--what an amazing journey you have ahead of you this summer!! Praying the Lord gives you and Dave wisdom for exactly how to make K's world broader. He is such a blessed little man to have you two as his parents!

Kristen said...

Very smart and insightful to recognize. I'll pray that wisdom comes to you in full doses and that perhaps widening his world may be so much fun for the family it won't feel like a lot of extra work.

Rach@In His Hands said...

K is such an amazing boy and you are an incredible mama. What a perfect fit God made! Cheering you on as you explore and learn and grow together!

Head Nurse or Patient- you be the judge said...

When I read your post- a visual popped in my head of the movie of Helen Keller and her teacher Annie- at the pump- pumping water and learning that concept- then running madly around experiencing and "learning" other concepts.

Just thought I would share that thought in case it gives you some ideas.