Wednesday, May 25, 2011


This is the first word that came out of the mouth of our ARC advocate after Jacob's 2,5 hours long IEP meeting this morning.

We were 11 people crammed in a tiny conference room in the Elementary school Coyote Ridge. An IEP (Individualized Education Plan) had been drafted for Jacob by the team. It was all good until we got in to Jacob's medical safety, and if Coyote Ridge can provide Jacob a safe medical environment.

The principal of the school as well as all staff (including the nurse) expressed over and over again that they don't think they can provide a medical safe environment for Jacob. The principal couldn't in her mind foresee how she could meet his needs when she only sends kids home from school, if they vomit or have a fever. She has 25 kids in her kindergarten class, and a total of 540 students in her school. She expressed that we need to do the "ethical right thing" for Jacob.

I was holding it well together until the nurse said that "mom has a feeling that Jacob is not going to be medically safe in the school". I had to stop her right away, and explain that this was not a "feeling" that this is a fact. I was emotional when I expressed that Jacob is not going to be in the school system for a very long time, so let's do the right thing for him, let's not be political, let's grant him and us the wish to stay at Bal Swan.

We have a big letter from Dr. E. saying that Jacob can't go to public school - period. He has to stay in his private school seeting that has proven for 3 years to keep Jacob medically safe. He can't be moved. Her statements went into the IEP, and her letter will go to the Director of Special Education.

Jacob's team consisting of our ARC advocate, Jacob's current teacher, and Jacob's home nurse was good and consistent. We definitely gave them the picture that Bal Swan can handle all Jacob's needs, and also how medically fragile Jacob is. Jacob needs to have a nurse who knows him very well, not just any nurse. The ARC advocate went back to the fact over and over again that the school is imposing an increased risk for Jacob compared to Bal Swan who already has a track record of keeping him medically safe. She also had to point out to the school district over and over again that Jacob doesn't want homebound services. Jacob should have the least restricted environment by law, and Bal Swan has proven for 3 years that they can integrate him with healthy children in a class size of 12 including Jacob.

And then we had the woman that we all don't know what her role was that just couldn't give up on the fact that the school district could create a health plan for Jacob that would work. I heard ridiculous things, e.g. Jacob could have his own room and only "healthy screened kids" would be shuffled in to see him on a given day. What is that for integration??? Where is that room? Who is going to monitor that process? Now he comes in in his wombat chair, and is surrounded by children the minute he steps in to the class room!

We were all disappointed after 2,5 hours to leave without a decision. All staff and principal know they can't care for him (but as a staff member you can't add your concerns in writing to the IEP by the way), and they all want to see the right thing for Jacob after having read his medical history and what he has gone through in his short life. It pissed me off that the assistant director of Special Ed didn't bring her boss, if she couldn't make this decision on her own. It wasted our time.

So, we're waiting. Waiting to see if the school district will do the right thing for Jacob or if they are going to make this a political issue, since Jacob would once again set the precedence in the school district for a private choice instead of public kindergarten. Our ARC advocate is ready to appeal, since she feels strongly we can "win" this.

The meeting if anything fueled me to take this a step further. The meeting made it crystal clear to me that Jacob can never go to public school, and it makes me a little bit sad, but at the same time, it also fuels me to do the right thing for our little buddy.

Jacob has had a quiet day in the hospital today. He has slept a lot. No breathing issues, no seizures. If everything goes well, we should go home tomorrow on 2 different IV antibiotics that we need to administer 5 times a day. It will be work, but if we can get rid of this pneumonia once and for all, the work is so worth it. We also have our great nurses lined up to help us over the coming weeks!

Much love, Maria.

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