Gray day everything is gray…


…I watch but nothing moves today. –Seuss

It is raining out today. It is perfect weather to match my mood.

My mom called me yesterday. My cousin John is dying. He has a staph (sp?) infection. That coupled with his alcoholism appear to be a toxic combination. He is on a ventilator and they give him about 24 hours.

I have not seen him in about 20 years. It is just weird to think I may never see him again (no really). I just hope he regains consciousness long enough to put his life in order.

Jenn and I also went to Ethan’s IEP (Individualized Educational Plan) meeting today. It is just frustrating sometimes. Ethan is developmentally average or above that of his peers. Yet because he misses so much school due to illness, they want to keep him classified as Special Needs. This would not be a bad thing if that classification did not carry along with it a lot of baggage. It did not help matters that he is going to miss another week of school next week to recover from his surgery.

Although I am becoming a pro at the whole child surgery thing, it still weighs heavy on me. It is like knowing you are going to be taken hostage. The minute they go into the operating room, you give up a huge chunk of control over your child. There is just no getting “used” to it. I am pretty sure everything will be fine, but you just never know. It is sad, every time he has surgery, I mentally plan his funeral. I know this is a terrible thing, but I do it none the less. On second thought, no, it is just plain sick.

Anyway, I will be holding my breath for the next week and a half.

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By Ben Posted in Life

4 comments on “Gray day everything is gray…

  1. “Special Needs” doesn’t have as much baggage associated with it as it used to, I think. Due to his Asperger’s Syndrome, Daniel is classified in this category, and it’s not the same as the “Special Ed” kids that I knew growing up in the ’70s. For one thing, he’s mainstreamed, like many special needs kids, due to the ever increasing budget cuts in education (“No Child Left Behind” is a joke!). There are at least 5 kids in his fifth grade class who are also special needs. It doesn’t have the same stigma associated with it that it used to.
    As for the surgery thing, I think it’s natural, Ben. I’ve done that when my parents, and when Brian had surgery. I’ve been lucky enough to never have to live through my children going into surgery, though, but can imagine it’s excruciating. From the recent miracles that you’ve blogged about, it seems obvious that God has bigger plans for Ethan, though, so maybe you can take courage from that? Our prayers are with Ethan and you and Jenn over the next several days. Let us know if there is anything specific that we can pray for.
    love,
    jude

  2. Friggin don’t worry about “the baggage” what is important is that Ethan is getting whatever he needs to excel in his education. Having married an educator, having spent quite a bit of my professional life in the classroom and amongst educators, having actually been a part of several IEPs (from the teacher side) myself and while living in Pasadena having a Pastor’s wife (a Bethany grad) who was a Spec. Ed. teacher (still is unless she took the principle position they were offering her) spending hours talking her role and the work she does and as much as it kills me to do so I must agree with Judi, the baggage is not what it used to be. HOWEVER, if you think/believe it is, Ethan will catch that attitude. So be careful what you project would be my limited wisdom offering.

    And PLEASE let us know how we can be praying for you, Jenn and Ethan over the next week or so. It would be my honor to be praying for you folks.

  3. I have to agree, the IEP is really a good thing now. Lee has one, and it really is a guard against the system running over your kid because he needs things to be different. In fifth grade Lee was reading at a 12th grade level, but he was barely able to do the most basic things like write down questions that the teacher put on the board, or accomplish simple non-verbal tasks. He could explain the 4 basic forces of nature, how they worked and why that mattered, but couldn’t write it out the simplest part on paper to save his life. Because he was so bright, they kept wanting to remove the supports he needed, but the IEP allowed us to keep them from doing that. When he struggled, the IEP was there to keep them from punishing him for things that were beyond his control. And it will do the same for Ethan. Some stupid teaacher (no offense to the teachers here, there are stupid people in every profession) will try and punish him for being gone. It happened to Lee when he was going in and out of the mental hospital. One of his teachers didn’t like that he was missing school and tried to fail him. Even though he was struggling with serious life issues. That fall he went to middle school, and after a week of being in class they wanted to move him out of the special needs math class and into a regular class, (math is still a nightmare for Lee). After one week. The first week, where you don’t do anything anyway.
    I understand how you feel, it was hard to face, and I know that Ruthanne would have an IEP if she were in public school, she’s bright and just a great kid. And I know that Ethan is awesome and you really don’t see why he should be penalized for something that isn’t his fault, but it isn’t a penalty. It isn’t perfect, but it really is a good thing. My advice is to learn as much as you can about it, and make sure that it has the protections in their for Ethan. I know you won’t like this either, but the ARC (association of retarded citizens) is a great resource, you can even get an advocate to help you go through the process for no cost. And though Ethan isn’t a retarded citizen, he will need some extra support, and that is ok. And like Judi says, most of the kids on an IEP are in the regular classroom, most other kids don’t even know.
    I am sorry that Ethan has to go through all this, and you too, you all are, as ever, in my prayers. Like Judi and Tim said, let me know if you need something specific, either in prayer or otherwise. Anything at all.

    Oh and just a word on the “No child left behind” thing. If it was a joke, we would all be better off. In my experience it is closer to abuse. My son can’t take a written test. They stress him out, they can actually cause him to have hallucinations, but because of the current wave of “sympathy” for those that aren’t making the grade, the schools would basically coerce him into taking the tests. It was always a nightmare. Thankfully in the residential treatment center, they don’t care about ratings or anything else. They just work with the kids as best they can. But no child left behind really means that you better stick with the rest or they are going to make your life suck. Sorry just my two cents.

    Summary. IEP good. Government interference bad.

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