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Kyle starts school on Tuesday. Same school, but new teacher, and new classroom. This will be his first classroom change in 3(?) years! Anyway, every year wifey writes a note to give to the teacher to get her up on all things Kyle…because my son is a unique case, and has lots of things that the teacher needs to know on day 1.
Usually she prints it out and puts it in his backpack on day one. However, this year wifey got a hold of the new teacher’s email address already (!!) and sent this email to her yesterday afternoon.
I’m posting it here for your enjoyment and also for my own historical purposes so I can go back and see what my Kyle was like as he entered the equivalent of 6th grade. I’ve also included a few links to other blog posts that explain in more detail some things in wifey’s letter
So here’s her email in its entirety. Only the names have been changed to protect the innocent.
🙂
Oh, and Kyle goes to school in a city different from the city where we live. That’s why there’s references below about “my district” and “your district”
Ok, here it is… Enjoy!
Dear S___,
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
begins.
Kyle is very sweet, loving & affectionate. He loves
books, Sesame Street, Dora, his iPad, popcorn & potato chips just to name a few
things.
Often times at school, however,
I feel his real personality doesn’t shine through. He is
often indifferent, unrelated & at times his negative behaviors outshine his
positive behaviors.
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:
http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns
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 &
play.
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
them.
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!
Autism Mommy
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I just had to pop in and say that as a special education teacher who works with students on the autism spectrum who are low-functioning, these kinds of emails are GREAT to get. Sounds like you and your wife are fantastic parents to work with, and I just wanted to say kudos to your guys for being proactive in talking with his new teacher!
Great letter! I like to meet with my son's teacher, too, before the prior school year ends and again at the beginning of the new school year to go over the IEP.
I teach middle school students with special needs and I wish all the parents would write a letter like this one! Letters like this are very helpful and parents know their children the best.
I sent a similar letter to my daughter's teacher this year. You should ask AM to do a guest blogging spot on occasion. I'd love to hear her point of view too.
Alot of New Yorkers are moving down to Florida!
Thanks autism mommy and daddy for sharing this email. My non-verbal 2 yr old will be soon transitioning into preschool & I want to remain as involved as I am with him now, if not more, once he starts school. Your letter is a great example for me to follow on how to start his school experience on the right tone with his teacher. –> Vionisia
I love your blog! You and your wife are amazing! I know no 2 kids with autism are the same but my son has a lot in common with yours. However, not the seizures. I'm amazed at the strength you both have and you sharing these glimpses into your life are such a comfort for me to know these things don't just happen at my house. Keep up the good work!
I love her!! It's very rare when I have witnessed an autism mom who really dedicates the time to get to know her autistic child. There are too many who drop their children off at school and expect the teachers/staff to do all the work. I am a firm believer that the learning, caring and quality time starts at home. Getting to know your child, especially an autistic one is key to learning how to help him/her. What a wonderful lady!!
Vanessa
Autism Mom
I used to write these for my daughter's teachers. Then I discovered that since they had so much trouble reading the IEP summary, this wasn't going to even get looked at. Sometimes, you get good teachers. The rest of the time, you have to fight for the IEP.
I loved reading this! I teach pre-schoolers with autism in Delaware and would be so receptive of an email like this! Usually in my case, we are working with children who have first been diagnosed and I'm typically asking the parents a bagillion questions to get this exact type of information out of them. As a teacher these are exactly the things we need to know! Initially I think some of my families are a little confused as to why I need to know some of the things I ask, such as how does your child sleep at night, but that info is so vital to how their day may go at school too! Kuddos to you Autism Mommy!!
Erin
Creating & Teaching
I send very similar emails to my sons teachers as well. He's 7 1/2 non verbal, severe autism & sensory issues. It stuns me that there are parents who don't communicate this info! At drop off I always give a heads up if sleep wasn't good or didn't eat a lot of breakfast etc. If a need is expressed for supplies or snacks I get them within a day. I was shocked to find out a lot of special ed parents don't even provide necessities or communicate on a regular basis with teachers.
Autism Mommy this is an informative letter for the new teacher. It invites collaboration with the one direct person (you) who works to make life for Kyle as successful as possible. I especially appreciated the mention of individuals working to report about Kyle's progress and successes during his day. I'll also bet that you are the type of person who consciously "smiles" whenever you are interacting with any of the "community" that surrounds Kyle at school. You just keep reinforcing them in so many ways. Bravo! Thank-you for a great template for other families to model.