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Friday, March 14, 2008

Notes on life in 2008

I often use this blog these days to share my thoughts about Common Cupboard or Common Heart. I have used it late last year to share my thoughts on prayer and other spiritual issues. But the purpose of this blog if you go back to the beginning was to simply muse about life and what I have been learning. To coin a phrase, it is my "notes along the way."

I still have plenty to say about Common Heart and Common Cupboard. I have a list of posts in my mind to write on spiritual issues, and interaction with the culture. However, I thought that I wanted to get back to the simple notes along my way. And so this blog entry...

Here is one of the biggies on my heart.
My son Kyril - My son was finally diagnosed with Aspergers Syndrome (autism spectrum disorder) and two other related disorders. We have been battling with the bureaucracy and the delays of the school system. The whole process has been frustrating. On the other hand, the love and patience his teachers and others have demonstrated at Wesley Chapel Elementary has been so heartening. We finally broke down and paid for the evaluations ourselves (thank God for insurance and flex spending accounts). So we will be able to provide this to the evaluation team considering Kyril for Special Ed services.

Quite frankly, and with no parental exaggeration - sure Keith ;-) - Kyril is a brilliant young man! This has actually been one of the problems getting the sevices from the school he needs. He is in the AIG (gifted) classes, and yet has challenges that only Special Ed can help with.
It was exceptionally frustrating to him when the teachers, pulled out all the supportive things they had been doing for him (but were not authorized to do) . They had to let him do poorly demonstrating his inability to access the material. They did this to prove a point to the Autism team. It was heartrending to have him come home with his first D's in academic classes and U's in cooperation and respect He had always been an A/B student in the AIG program. I couldn't even bring myself to talk with him about his grades. Because I knew no matter what I said it would break open the pain my wife was only barely able to soothe.
A couple weeks ago we amended his 504 accommodations and codified all that the teachers had previously been doing, and in that short time he brought all his grades back to A's & B's. My opinion is that if he was given what he really needed to succeed, he would blow away the grading system. He is after all, positively brilliant!

The next step (we've been working on since November) is to get him qualified to have what is known as an IEP (Individualized Education Plan). This may give him access to special ed resources like much needed occupational therapy. As he goes into Middle School next year there are many, many concerns we have and with this legal protection we will be able to address them better and more fully for Kyril's education.
Anyone going through this kind of thing with the school, if there is anyway to get the evaluations done privately, I would suggest doing it. I realized in late February when the school finally agreed to evaluate him for autism, 3 days after I set up a private evaluation that for us a private evaluation was the better choice. The main reason is that the school has a very limited agenda - "appropriate" education of my son. I have a much broader agenda - I want to see him succeed in life and be all that God has created him to be. When the school's evaluation is done they provide no diagnosis, they are evaluating him for their agenda alone. When I am done, I have a diagnosis that I can use to access for my son other services that insurance, for instance, would pay for.
A second reason I suggest doing it privately is having finally gotten the tests done and the results, there is a sense regaining control for me, the parent. Whether this is real or imagined, at least I have done something that I am not waiting (forever) for the system to do for me. Maybe, (I doubt it) it will speed up the process at this point. If we had done it at the beginning, the process of determining eligibility for IEP and special ed services would have been done by now.
On a different note, same tune .... Going through the process has caused me to ask some questions of myself. I have enlisted the prayers and support of friends, family, fellow "common hearted folks", and others through email. Deb and I have been overcome with the expressions of support and love from these people! It has been amazing.
In one of my emails, I gave a list of prayer requests. They were specific things to pray. One thing that was absent from my list was "healing". When I realized that it was not top of mind for me, I had to question myself as to why it wasn't. Mind you, I believe in healing. I have experienced it. I have seen people healed ... God has used my wife to heal people miraculously on several occasions.
Why didn't I ask for healing? I asked myself that before I sent it out, and wrestled with my thoughts about it for a couple days. I realized that I did not consider the challenges my son has as an illness. When I think of Kyril, I cherish him exactly as he is. (Frustrating as it is sometimes.) I want to alleviate his challenges, and help him to overcome them. We all have challenges and we all have gifts. To some degree Kyril's gifts and his challenges are all tied up together! How can I ask God to take away the challenges and leave the gifts. And if he took away the challenges, how would the gifts shine! I must say that I came to realize that I see Kyril as having "different abilities" rather than having "disabilities". Yes he is socially, verbally, developmentally, transitionally, and physically challenged, but he is also thoughtful, focused, loving, quick witted, determined, and quite brilliant.

The other thing I realized, is that Kyril and others whose "differing abilities" definitely bring challenges into our own lives. They are people that God loves and created. It seems to me that God uses them to challenge our values, norms, attitudes, actions, thought patterns, love patience, etc. I think God uses these folks to develop in us his own attributes of love, kindness, compassion, caring, acceptance, appreciation. I know that as soon as I realized that my son had some of these challenges, I began to change! It immediately made me realize that I had some major problems, in my actions, and attitudes toward my son Kyril - and by extension to my family, and those around me. Christ had graciously reveled some them to me through how I reacted to Kyril.

So, as I said at the start my son, Kyril, is a biggie on my heart these days. I have a feeling, "We have not yet begun to fight."

1 comment:

- Noah Kiser said...

from one reader to another -

kyril (and the whole adams family) is in our prayers.

keith, you come up often as we talk about serving as christ commanded - you have been an encouragement and a much needed challenge to me. as hilary and i head off to GA, know that your example has me already seeking out ministries to partner with and serve my soon-to-be community. be encouraged and persevere - you are being used in a mighty way!