Friday, October 14, 2011

Paying Twice

We have hit a smooth spot with Carson's treatment right now.- No illnesses, no low counts (in fact they are way too high), no visits to the ER. Praise God!

Time to relax a bit? Are you kidding? As I am now finding out, getting through treatment is just the beginning of this journey. Now it is time for some major work. Time to begin Operation Carson Catch Up. You see, Carson has not only paid his cancer dues with his body, now he's paying again in other ways. He has some issues, both cognitive and physical. How much of it is a result of treatment, how much of it is a year spent doing nothing but clinic/hospital, and how much of it is a stubborn 5 year old boy is yet to be determined.

Luckily, there are some great people to help him both at school and in the community.

At school, he has an Individualized Education Program (IEP). This is the result of extensive testing he went through and a series of meetings over 4 months to determine how best to help him.

So, 4-5 times a week Carson has an extra reading group at school to work on writing, phonics and reading skills. This is in addition to the regular reading program that he participates in while attending class.

A half hour a week, Carson receives some occupational therapy at school to help him with his fine motor skills. The goal here is to make it easier for him to write.

Another half hour a week is spent receiving instruction in concentration and focus strategies - usually during a class activity.

And I should mention here, that Carson receives a lot of attention and help by his regular teachers and Special Ed teachers who are already in the classroom. Just one advantage of a small but wonderful school system!

Outside of school:
Once a week Carson sees Ms. Rachel for speech therapy where he learns social skills, strategies for retaining instructions in his working memory, use of descriptive language, and practices his processing skills (how to get the thoughts he has in his mind conveyed to someone else and how to receive instruction and carry it out.)

At home, we "have school" every night after dinner. We review how to write various letters, what sounds they make and play games to increase his memory skills. This includes weekends. We also work throughout the evening and days on issues that the speech therapist has asked us to concentrate on - remembering "who, what where", telling stories in an organized way, etc.

We have seen great progress in Carson in just a few short weeks and are very encouraged.

Earlier this summer, Carson had a round of neuropsych testing on top of the testing he went through via the school system. Results of that were quite disheartening as it seemed to say that he has definite cognitive impairments that would probably not be overcome. I am not ready to make such a judgement on a 5 year old. Just as with our cancer treatment, with God's help, we will do the best we can, we will do all that we can, and we will tell our own story. Our course in life and Carson's course in life will not be predetermined........

-Jennifer

2 comments:

  1. I can't begin to imagine the challenges all of you face. Thank you for being so open and homest about all of them and sharing the good news and the more difficult parts.

    I continue to pray for that God will do great things in Carson's life and continue to give you the strength, courage and wisdom to persevere.
    Love,
    Ann

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  2. Thank you for your wonderful openness in sharing this so we can all add these challenges to our prayers for Carson and the entire King family. I'm so thankful that awareness of these side effects is now a standard part of pediatric cancer treatment, so you are getting the crucial early intervention.
    And you are so right about the "side effects" of being a 5 year old boy! Our schools expect so much more of K's now than they did even 20 years ago, when reading wasn't expected until first grade, at least here in Fairfax. Carson will make amazing progress, especially with your love and encouragement.
    Prayers, Betsy

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