Now Reading: A Frantic Email To Kyle’s School re: Breath Holding — “Don’t Kick Him Out!”

A Frantic Email To Kyle’s School re: Breath Holding — “Don’t Kick Him Out!”

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.  
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Well yesterday, as I reported on FB, 
“…the new school we’ve come to really love over the past two months, BLINDSIDED us yesterday and has discharged Kyle because of his holding breath issues. 

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.

So everyone agrees that the school was within their legal rights to discharge Kyle…  but everyone also agrees that the way they did it was about the SHITTIEST way it could have been handled.
So the wife and  I spent the good part of the afternoon yesterday (my 2nd day off from work because of this) crafting an email to one of the school administrators who sympathizes with us and knows what we are going thru because “I also have a son with autism” (please note mysarcasm in that last sentence).  
So we sent the following email to her and cc’ed the world (our school district, her superior, the school psychologist, etc…)  
I’m doubtful it will get us anywhere…but we had to get all our points out in an email because we couldnt think on our feet at the meeting on Wednesday because we were so blinsided and because it took them 45 minutes to GET TO THE POINT…
Anyway, here’s the email we sent…
Dear ____,

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.

Best regards,

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 (___) ___-____.
Best regards,

Autism Mommy & Daddy

Written by

Frank 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” :-).

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10 People Replies to “A Frantic Email To Kyle’s School re: Breath Holding — “Don’t Kick Him Out!””

  1. Anonymous

    I see this is a few years old. I trust things are settled by now! I came across this following a link from a link from…. Anyway, basically I stumbled on it, and was struck by the heading saying kicked out for breath holding. I have a daughter with Rett syndrome, a d I can tell you, if kids can get kicked out for that, there wouldn't be a kid who has rett in school anywhere in the country. They all do it. And it's not a behavior– it's neurological. We are just told that if she holds her breath until she passes out, then she will begin to breathe again. They can't hold their breath when they're not conscious. I don't know of any girls who hold their breath when they are asleep. But it's still neurological! Autonomic system dysfunction. So I was happy to see that you had already come up with the idea of talking to a Rett doctor. You must have been dealing with a private school– a public school can't just kick out a kid with special needs. They have to come up with something. And I think I remember the law saying something about 3 strikes before you are out? I just can't even imagine what was going through the heads of whoever came up with this ridiculous idea! Best wishes to you and you family. Our jobs aren't easy. But damn, I love my kid!

  2. So supposedly Kyle will be allowed back in school on Monday. That is what we were told by our city's special ed district chairperson.

    Supposedly all the doctors FINALLY conferred and FINALLY spoke to Kyle's pediatrician and they all agreed that Kyle's heavy breathing & breath holding spells pose no immediate threat to his health.

    They still want us to continue to see this behavior specialist and want him to come up with a plan to curb this behavior. This means he may need to leave school early a few days a week to fit in these appointments with the behavior specialist.

    So after missing 9 days of school SUPPOSEDLY he'll be allowed back on Monday. Forgive me if I'm still doubtful and waiting for the other shoe to drop. And as happy as the wife & I are, we are still LIVID at this whole situation, LIVID that it took 2 weeks to settle this and LIVID that he can't begin school tomorrow? Why can't he begin school tomorrow?

  3. Aimee

    Autism Daddy: I hope this is what your lawyers are telling you…

    A disruptive and dangerous behavior at school typically results in serious consequences, ranging from the child's suspension from the class for several days to a full expulsion from the school. If the child with a disability had been determined to have committed an offense that violated school rules and could result in expulsion for longer than ten school days, the IEP team must meet to determine whether the misconduct resulted from the disability. This is referred to as manifestation of determination hearing. It must be done within the first ten days of child's suspension.

    If the behavior is a manifestation of the child's disability, the child must be returned to the current placement, unless the parent and IEP team agree otherwise. If a child has behavior problems that interfere with his or her learning or the learning of others, the IEP team must consider whether new strategies are needed to address the behavior. If the IEP team determines that such services are needed, they have to be added to the IEP and provided.

    If the behavior is not a manifestation of disability, the child may be disciplined, suspended, or expelled to the same extent as a child without disability. As a result, no specific and necessary for a disabled child services will be offered.

    The question is how to establish that the offending conduct was "caused by or had a direct and substantial relationship" to the child's disability. In the case of a child with a neurologically-based disability which involves impulsivity and uncontrollable acting-out behavior, finding a link between behavior and disability we need to focus on the neurological impediments to behavior control. The law directs schools to consider the use of Functional Behavioral Assessments and Positive Behavior Intervention Plans in the case of behavioral problems. However, relying on a commonly used reward and punishment model will not assist a child with a neurologically based disability. In fact, it frequently increases, rather than decreases, disruptive behaviors in students with neurologically-based disorders, such as Autism, Tourette Syndrome, or Bi-Polar disorder, because this behavior is stimulated and motivated by internal biological

  4. Wow – I'm so sorry that you are having to go through this. I know a little bit of the pain you are experiencing though as my son was kicked out of one school after another in his younger years. It was terrifying to think ' how on earth will he ever make any progress if no one is willing to take a chance on him?'. That concern kept me up many a night for sure.
    We ended up moving to Minnesota where we have received MUCH better support from our school system. It seems like that has made all of the difference -may I ask where you live?

  5. Donna

    I'm so sorry you are going through this. I have had to pick up my PDD/Bipolar daughter from school for dangerous behavior, but she was let back in as soon as I got a note from her therapist saying that she was not a danger to herself anymore (or I had the option of going to the ER to get the same letter). And, the school paid for the evaluation. The only school that ever kicked her out completely was a private daycare. I can't believe a school can kick a child out when he's not being a danger to anyone. I'm sure that like my daughter, Kyle needs the structure of school. I hope you'll be able to resolve this soon.

  6. Anonymous

    I am so sorry that you and especially Kyle has to deal with this change in his life. Since he was enrolled in this school for two months, I am under the impression that they knew of his problems. My question would be why this was not addressed earlier, why no behavior plan in place when he got to the room? We have numerous students in my class that have seizure disorders, students that are very medically fragile, and one student that has Pica, which is eating inedible objects (which can be big or small). All of these students have behavior plans and it would not even be considered to make them stay home! You say he has never passed out from this behavior and I am almost sure he won't because he KNOWS that feeling right before he does and has learned to not go past that, he has a survival instinct probably. This behavior IS a challenge, but that does not mean that his school should give up. I would keep working the angle you are and fight for your child's RIGHT to be educated in the least restrictive environment.

  7. Ugh! School and school administrators can be so difficult. I think a lot of us with ASD kids have this sense that the other shoe could drop at any minute despite our best efforts. It's frightening. I'm sorry to see this has happened to you. Keep fighting the good fight!

    I just wrote about my own struggles with school this week (though nothing nearly as serious as what you are going through):

  8. logansmom825

    I totally agree with both your emails you sent…they shouldn't be able to discharge a child without contacting the parents or even his doctor first…I like that you gave them suggestions you were willing to do so that Kyle would be able to go to school. It saddens me as a parent to think that this could be done…I also think that they should send a teacher to your home so that Kyle can still be able to learn the stuff they are teaching in class..that's what my son's teacher does for a boy in my son's class…Good luck and I hope things get better!

  9. Rups

    I agree fantastic letter I just hope for all of you that it is acted upon correctly – There is a little girl at my little chaps school who is always holding her breath but the school just have policies in place to protect her and them.

    I really feel for all three of you, I know it's really hard and I wish you all the very best.

    Most importantly remember you guys are fab parents 🙂

    Best Wishes

    Rups (UK)

  10. nelly

    A great letter! Really there should be no question of not letting him back,especially when nothing has ever happened at the school. Keep fighting ,you are great parents !!