A Frantic Email To Kyle’s School re: Breath Holding — “Don’t Kick Him Out!”
November 18, 2011
You can also filter by categoriesUncategorized
Sorry, we didn't find anything.
Now Reading: A Frantic Email To Kyle’s School re: Breath Holding — “Don’t Kick Him Out!”
November 18, 2011
If you’ve been reading this blog or my Facebook Page for awhile, then you know all about Kyle’s breathing & breath holding problems. If you don’t you can read more about it here.
var _gaq = _gaq || ;
ga.src = (‘https:’ == document.location.protocol ? ‘https://ssl’ : ‘http://www’) + ‘.google-analytics.com/ga.js’;
var s = document.getElementsByTagName(‘script’); s.parentNode.insertBefore(ga, s);
It has gotten worse. He does it over 300x a half hour, now while pushing against his neck / jugular and the school is very concerned about him passing out or worse.
So they are kicking him out and recommending a clinic / behavior analyst to help eliminate the behavior. When the behavior is gone, if his spot is still open in the classroom, they will welcome him back.
What they don’t care about is that our home school district is the home of red tape and may take weeks before they get approval to send us to this behavioralist.
So we are heading in to Thanksgiving week and then Christmas without a school or a plan for Mr Kyle…
Lawyers have been called…again…”
So today I can report that we did speak to some legal folk and found out that they are well within their legal right to discharge Kyle if they feel his behaviors “are dangerous to himself and/or others.” As I said they are fearful that by holding his breath so much, so often, that not only could he faint, but because of the continued lack of oxygen he could have an organ shut down…or have a stroke…or worse.
We were absolutely BLINDSIDED by Kyle being discharged yesterday. If the meeting even began with “Kyle is going to be discharged because…” we would have had a chance to ask questions and discuss other possible options / solutions. We would have appreciated being given a warning. Even better, it would have been great if we could have seen the data and heard from the folks at the ____ clinic first hand. It would have been great to be on your phone calls with Dr. ___ so we could have talked about a solution TOGETHER. Instead, we thought we were walking into a meeting where we would finally get to the nittty gritty of how to integrate a behavior plan, and were blown away by the discharge. We are devastated and outraged, but mostly just sad for Kyle.
We are writing this email to set up another meeting right away. We would like the opportunity to discuss solutions to keep Kyle in his classroom while we work on his breathing issues, or at least until he has a chance to be evaluated and a plan is put into place. We understand the bottom line is that Kyle needs to be safe in the classroom and that you are concerned for his health. We also understand that he is a liability. We would just like to work with you on how he can be safe in your classroom while we quickly work out his medical plans.
Here are some possible ideas:
—We could get a nurse’s aide in the classroom. (or whatever medical practioner is necessary. ___the sub in his classroom is an EMT)
—Mom can volunteer to be in the classroom
—We could sign a medical waiver relieving the school of liability if something happens
We could do all of this while seeing Dr. ___ on our own, as an out-patient that we would pay for out of pocket or thru insurance while out home district continues to pay for his schooling.
While we know this is a grave situation, we feel the administration has overreacted. We are sure that the nurse has frightened you with what COULD happen to Kyle. This decision was rushed. Kyle has not lost consciousness… and although he may be in danger of doing so, so would a child with a seizure disorder. What would you do in that situation? Would the child be discharged without benefit of a warning if they had a seizure disorder? … Or a child that severely bangs his head… Would they be discharged? Nothing has happened to Kyle. This is all based on fear, projected outcomes, and assumption. But NOTHING has happened to him in the classroom as a result of his breathing. Furthermore we feel somehow his breathing issues, meltdowns, blue fingertips, and weight issues have all been lumped together as part of the breath holding issue without the chance for us to explain. His fingers have always been prone to be blue in the cold weather, he has recently gained weight despite a 4 day stomach virus, putting educational demands on him will not worsen his breathing issues, his breathing issue is a constant. It is separate from his other behavior issues. He holds his breath happy, sad, relaxed or stressed.
We must remind you that we told you about Kyle’s breathing issues during Kyle’s intake. We gave you his previous school’s behavior analysis and were assured that your school could handle this type of behavior. So we waited and followed up with his new teacher for a behavior plan to be put in place.
Again, of course we recognize the medical urgency of Kyle’s issues. As you know, we have been working on it and this Friday we are seeing a neurologist who specializes in children with Retts Syndrome who are known to hold their breath. That was the next step in our pediatrician’s plan. That neurologist was going to work with our psychophamacologist to tweak Kyle’s meds. After that we were going to revisit possible digestive issues and keep looking for a solution.
Since Kyle has first started at your school 2 months ago he has made huge strides. From day one, he did well in school and it carried over to home. He has been so happy, more related, more focused. He has been potty trained! He has been willingly working on his IPad, he gained 3 pounds. I could go on. To take him out of that classroom would be nothing short of tragic.
We are asking you to give us a chance. We will even appeal to you as a parent of a child with autism. There was never a plan, a warning, a HINT that Kyle was in danger of being discharged. Kyle’s teacher was as shocked about the discharge as we were. Let’s work this out.
As I said, we would like to schedule another meeting with you, and anyone who needs to be involved, as soon as possible to discuss this further. We look forward to hearing from you soon.
Autism Mommy & Autism Daddy
2nd email sent 15 minutes later…
I just got off the phone with Kyle’s pediatrician about this situation and he was flabbergasted that no one asked to speak to him since he knows Kyle and the history of these breathing episodes best.
So if this decision was based on your data and the nurse’s recommendations then we feel that it’s only fair that Kyle’s doctor be consulted.
This just further displays that this decision to discharge Kyle was made too quickly.
Kyle’s doctor name is Dr ____ and he can be reached at (___) ___-____.
Autism Mommy & Daddy
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).