The Wife’s Email To Kyle’s New Teacher
August 29, 2014
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Now Reading: The Wife’s Email To Kyle’s New Teacher
August 29, 2014
Ok, here it is… Enjoy!
I have heard wonderful things about you & really look
forward to my son Kyle being in your class this year.
I wanted to introduce you to Kyle before the school year
Kyle is very sweet, loving & affectionate. He loves
books, Sesame Street, Dora, his iPad, popcorn & potato chips just to name a few
I have been told over the past 5 years or so that he doesn’t
like to work & is easily frustrated.
Therefore making it difficult to push him.
I really feel he has potential but unfortunately behaviors,
regressions & poor health have really slowed down his progress.
Which brings me to Kyle’s epilepsy. He was diagnosed 2+ years
ago & we have been working diligently to get his seizures under control.
Typically, his seizures last between 3-10 seconds. Changes in his meds can make him sleepy. Naps
at school are inevitable. (I’ll send in the blanket that he sleeps on).
Currently we are slowly going up on a med & have added another one. (I will
give you & the nurse his current list of meds).
Over the summer in school Kyle was in a pattern where
he would have a seizure or a cluster of seizures before noon & then nap.
Sometimes he naps without having a seizure. While he naps it’s important for
his 1:1 aide to stay with him because he has a better potential to have larger
seizures in his sleep. (Not likely but possible).
In addition to his meds, Kyle has a VNS device implanted in
his chest to help slow down his seizure activity. It’s described as a
“pacemaker for the brain.” Here is a full explanation:
Last year his 1:1 aide as well as the other staff members
were trained in using the magnet as explained in the link. It is very simple
& cannot hurt him. (Wave magnet over the upper left chest for 5 full
seconds to help stop seizures). As I did
last year, I will send in the magnet to keep with his 1:1 aide. Emergency meds
are kept at the nurses office in the unlikely event that a seizure lasts more
than 3 minutes. (This is also something we did last year).
When Kyle was little he had many skills that he has now lost, but I believe that knowledge is still in him. He seems to understand most
everything around him. (i.e. he does not like when I speak about him, to others
in front of him).
Last year he was working at home with an after school aide (actually a teacher in your district) & he was making wonderful
progress with letters & numbers & general patience. Alas, she moved to Florida in June and he has regressed some in this department. My
point is I know he has more than he is giving at school.
At Kyle’s most recent IEP meeting changes were being made to make
his learning mostly about life skills & functional
communication. (Shapes & colors for example are really not very important).
He currently has his own Ipad (which I send to school every day) which he uses mainly for recreational purposes (tv, games, etc). However, my school district is supposed to get him an IPad
mini for use solely as a communication device. This way, he can continue to use his regular Ipad at school for incentive, reward &
My school district, was also supposed to write in the IEP that a behavior plan
was to be put in place to help curb Kyle’s breath holding (that’s another issue that
I don’t want to overwhelm you with here – but not to worry, it is behavioral
& not health related)…Anyway,my district did NOT put any of these changes
into his new IEP. Therefore this is something I’m trying to work out with
Lastly, I drive him to & from school each day. And in the past, often when I pick him up from school I’m told things
like “Kyle had 2 seizures, Kyle took a nap, Kyle had a BM etc.” All of this is helpful information & I
appreciate it. I would just love it if I was also told of Kyle’s progress and how I
can reinforce learning at home.
I hope you find this note helpful.
Thank you so much for taking the time to read this.
Looking forward officially meeting you on Tuesday. I’m
always available if you or the class needs anything.
Best wishes for a wonderful school year!
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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” :-).