Friday, August 29, 2014

The Wife's Email To Kyle's New Teacher









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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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Tuesday, August 19, 2014

This Year's Vacation = Maturity & Lemonade... (with pics!)

It's Wednesday at 10:54am and we are more than halfway thru our 10 day, upstate NY, lake vacation. 

And things are going really well. The king is having a really GREAT time, and therefore so are wifey and I.

We come here to the same town, same hotel/resort every year.  And this year's vacation is all about maturity & that stupid expression "when life gives you lemons, make lemonade"

Here I'll explain...

We usually come for 7 days. This year we splurged for 10 days. And I'm glad we did cuz it usually takes us 3-4 days to settle in and figure out which Kyle we have with us. And how to make the most of this trip for him. 

Like right now.  Kyle is napping. 


Every day since we've been here he gets up at his usual time 7:30am-ish) but needs a late-morning nap 10:30am-ish. 


In the old days that would frustrate wifey & me. "He's missing out on valuable sunshine and lake time!"

But this year we are making lemonade and respecting his late morning nap and working it into our schedule. We try to do some stuff together before the nap (lake time, breakfast out, etc) and then give him every opportunity to nap when we get back. 

We are respecting these late morning naps partially because we have matured, partially because we've got 10 days here so we figure he'll get plenty of lake time, and partially because the naps may be due to seizure activity. 

Yes, he's been a little seizurey since we've been here. Most have been small, and they seemed to be mostly in the morning. So we let him have his naps.  And during his 60-90 minutes of slumber we use them to our advantage.  (making lemondade out of lemons)

I went for a run during two,  wifey did yoga lakeside during two, we "made sandwiches" during one (that's code for something :-), and wifey is doing a little gift shopping during today's nap.  

Hopefully he'll be up around noon and we'll head down to the lake and meet up with a bunch of wifey's family. 

As I said we come here every year.  Usually some of wifey's family comes up to overlap with us for a part of our trip. 

This year 10 people came up.  And Kyle seems really happy to have them around. 

And wifey and I are also happy to have them around too...for the obvious reasons:  we love them and they are great... and for the selfish reasons that they might not even realize... 

Having a bunch of family members around makes us focus on Kyle a little less.  We are not on too of him as much watching his every move which is good for us and great for him. We're having adult conversations so we're not as focused on his breath holding or his saliva play. 

And his pattern of stimming with sand?  
Going in to the lake up to his ankles grabbing two handfuls of wet sand and then throwing or placing it onto the beach.  Repeat over and over and over. 

If it was just the 3 of us it might be driving us a little batty and we'd be trying to redirect him. With other family around we use the stimming to our advantage and work with it.   We make lemondade...

With family around we think:

"He's happily stimming with the sand which means he won't leave that general area which means we can go up on the dock and have a sandwich and maybe an adult beverage with the rest of the family and keep an eye on him from up there."


Ok, so I've talked a lot about lemonade, but where's all this maturity I'm talking about?

Well the maturity is twofold.  This vacation has felt easier (so far!) than in years past because Kyle has matured some and equally important, the wife & I have matured some.

Kyle's maturity sneaks up on us, but when we are on vacation it's easier to spot because we can easily compare one year's vacation to the next (especially since we come to the same place and do the same things every year).  But here's an example of Kyle's maturity...

We can be in the room for longer stretches of time.  He is not boucing off the walls.  He can sit on the couch with his ipad and occupy himself for pretty long stretches 


and even sit at the table and have a snack without getting up every 4 seconds.


Wifey noticed it in the simplest way yesterday.  It was late afternoon, I was showering and she was rinsing out our bathing suits and brought them to dry in the sun on the table & chairs outside of our room.  She came back in and said "I just brought the bathing suits outside without even telling you...even something as simple as that I wouldn't have been able to do years ago... I would've had to warned you, 'watch Kyle I'm going outside for a minute' because in the old days he'd be opening the door, or trying to take the pictures off the walls, but because he's being so mature I didn't hesitate for a second..."

Maturity. 

And wifey and I are getting more mature and are more ok on vacation with dealing with the hand we are dealt. 

Here's what I mean. 

The big village we are near is a big throwback to an old days vacation spot. There's mini golf, arcades, ice cream parlors, etc. All things Kyle would hate or be indifferent about. 

As I said earlier when we have family up here we spend some lake time and some meals together and the rest of the time we each do our own thing. 

So after dinner the conversation always goes to "should we do GoKarts tonight or mini golf" 

Meanwhile my 11 year old is yawning like crazy and annoyed that he's not in bed already. 

In the old days I would feel sad or jealous  of all the stuff they were doing...all the stuff that Kyle was missing out on...

But I guess I've matured (or my antidepressants are REALLY working) cuz this year I am fine with the fact that by 9:00pm Kyle is asleep and wifey & I are in our room in our PJ's watching "Everybody Loves Raymond" repeats on TV Land while some family are in the village at the arcade. 

I think I realized that I was the one who felt sad. I was the one who was jealous. Kyle wouldn't like most of that stuff. So he really wasn't missing out on anything.

Maturity. 

And the same goes for other families that we come across. Am I jealous of the father that I see going out fishing with his son at 6am?  

Yes. 

Am I jealous of the families that I see that rent boats & go water skiing?

Yes. 

But that jealousy only lasts for a few minutes now not for a few hours. 

Maturity. 

Because I've come to the realization (the maturity) that fishing, waterskiing, etc is not part of the hand we were dealt. We were dealt the autism & epilepsy hand.  And I've come to accept that and try to have the best vacation we can have. And do mostly things according to Kyle's likes and needs while once in a while being selfish and pushing him out of his comfort zone to do something we like, like a dinner out at a restaurant or fireworks. 

And I know this post has not really been about Kyle it's been more about me and how I'm dealing with things... but that's because I'm the one with the issues here. 

Kyle is having an awesome time. 

That's all there is to say about him. He is happy and smiling a whole lot and soaking it all in. 

Here's a pic from early this morning (before his nap) that I feel encapsulates everything I've been writing about. His happiness, his & my maturity, and lemonade...


That's it.  THE END.  Over and out!

Peace and love my friends!

:)

Saturday, August 16, 2014

Our Lake Vacation: A Day 3 Recap

So it's Saturday morning 8:40am. We are on day 4 of our upstate NY lake vacation. 


I am feeding his majesty breakfast in our room/cabin/cottage/ apartment. 



Wifey is in the village  taking a power walk around the lake. We are taking turns getting our exercise in. Yoga for her Thur morning, a run for me on Fri morning, her power walk this morning, another run for me tomorrow. 

So wifey's family has come up to the Lake to join us for a few days. Her folks, and 2 of her sibs and their families and her cousin & his wife. All in there's 15 of us. 

We arrived Wednesday evening. 

Most of them arrived Friday morning and will be here til Mon / Tues. 

We are all staying in separate rooms and we all do our own thing but usually see each other down at the lake midday and then again around dinner time. 

Kyle seemed really happy to see everyone... especially my father in law, his Peepa. 

He loves his Peepa...violently. He loves his Peepa... obsessively.  As wifey says "he loves the crap out of him..."

Anyway we had a nice day by the lake even through the weather was COLD. Kyle was happy to be with everyone. 

And he even jumped off the dock again this year which forced me to go in too. It was f&$king freezing!

And in the room / cabin he's been an angel. Happily sitting around watching his iPad while wifey & I shower & putter around. 

He's still holding his breath WAY too much and he's still having WAY too many little seizures throughout the day (that we think the breath holding may be triggering some) but all in all he's been very content. 

I think he likes the 3 of us being confined to a very small, 2 bedroom cottage. I think he likes the togetherness of small apartment living where we are all on top of each other (not that our house at home is huge). 

I miss apartment living too since I'm not a handy guy... but he's too noisy for us to be anybody's tenants ever again. 

:-)

So the first 2 days were a delight, very calm and relaxing for the king and therefore for wifey & me....

Until last night. 

The 15 of us went out to a steak house for dinner at 6pm. 

Kyle sat at the head of the table (with autism service doggie Paula at his feet). Unfortunately for Kyle the head of the table was very far away from his Peepa. 

He was ok for the first 75 minutes of our meal. He wasn't very present/ a little zombie like but he was doing ok eating bread & mozzarella sticks while watching his iPad. 

But the later it got and the longer we were there and the closer it got to his usual bedtime the more "rambunctious" he got. 

By rambunctious I mean hitting wifey & me. 

Hard & often. 

Somehow we both kept our cool and kept on finishing our meals...

even though inside I was seething.  

It's hard not to get angry or react when you're getting hit on the arm & across the face. 

But when the rest of the family starting looking at the desert menus we decided it was time to get the hell out of there. 

Autism Parents never have time for desert, right?

:-)

I gave him his evening meds & his melatonin in the restaurant parking lot and raced back to our room dodging slaps, books, and a full soda can (!) that Kyle threw at us from the back seat. 

As soon as we got back in the room I put him in his pj's and closed his light and he was asleep in under 10 minutes. 

So so far only one real bad 90 minute stretch in the 65 hours that we've been here is not bad at all...in fact it is awesome!

but I gotta admit that it takes me a while to recover from a 90 minute stretch like that. 

For example this morning so far he's being pretty good but my nerves are shot and I'm on edge. 

But I have a good feeling about today... I really do... I keep telling myself...over & over...


I guess i just need to restart my internal HOURS WITHOUT AN AUTISM INCIDENT clock over and I need to go jump in the freezing cold lake as soon as wifey gets back from her walk to SHOCK that bad 90 minutes out of my system. 

That's what I'm gonna do...putting on my bathing suit now...

:-)

THE END. OVER AND OUT. 

Tuesday, August 12, 2014

This Year's Vacation: Ahhh, Only Autism & Epilepsy To Worry About...







We go on vacation every summer.  Kyle has extended school year (ESY) every summer and it usually lets out in mid-August and we go away the very next day.

We go to a Lake town in upstate NY and spend a week away.  

We've been going every year since he was a baby.

And today is the day. This year we are staying for 10 days!  It is Wednesday at 6:58am and we'll leave for our vacation as soon as wifey & the king wake up.., and as soon as the heavy rain passes. 

It is about a 4 hour drive. And it's supposed to rain all day today. In fact the weather forecast looks pretty shitty for the first 4 days of our trip. 

And don't tell wifey but I gotta admit that the weather forecast is freaking me out quite a bit. The idea of being stuck in the room/cabin for long stretches of the days with Kyle bouncing off the walls while it pours outside is stressing me out. 

And then it dawned on me.  I thought to myself...

"Ahhhn getting stressed about the weather....isn't that a fun, normal, thing to get stressed about... I'm worried about how Mr. Autism will handle the rainy days...  That's nothing compared to the stuff that we've had to stress about in the past while on vacation."

And just now as I'm writing this Kyle had a small, short seizure in his sleep. And I thought about that and strarted stressing about how his seizure activity might be affected while on vacation...

And then I thought....

"You are lucky this year. You only have autism & epilepsy to worry about while on vacation..."

And as crazy as that sounds. It's totally true. 

In fact last year on our drive upstate wifey said "it's like we show up to the lake with a different kid every summer" and it really is true.

For example, in the real old days, in 2009BM (Before Melatonin), we had a kid that would get up at the crack of dawn and stay up really late and couldn't stand being in our room/cabin.  So he would have us out all day long.  We'd be at breakfast as the restaurant was opening up.  And we'd have to drive around for an hour at night to get him to sleep in the car before carefully transporting him to the room.

But that's a silly example...

What this blog post is really about is how for as long as I've had this blog (since 2011), every August we've been heading off on vacation, with a somewhat major crisis with Kyle hanging over our heads or looming off in the distance in the weeks after our trip.  And how we would all still enjoy our trip immensely, and be sad to go home, and we look back at pics and think back upon those vacations fondly...but in reality we were vacationing thru some real stressful times...


In 2011, Kyle was smack dab in the middle of his "summer of rage" and was prone to many meltdowns, (sometimes violent) per day.  And we had to plan every day and every activity with an escape plan in place.  It was a rough week.  Plus while we were on vacation wifey was making frantic phone calls to our school district and fighting to make sure he had a school to go to in September.  (which in turns out he didn't...2 weeks, no school, lawyers involved...yada yada yada).

Anyway, all in all we had a pretty darn good trip that year, lots of happy pics to share on FB, but thinking back it was a pretty stressful time.


In 2012, we went away 3 months after Kyle had his first seizure.  So epilepsy was new to us and I was always on edge.  And while on vacation he started having these weird quick dizzy spells where he would fall backwards (we found out in October that these were "drop seizures").  Also while on vacation that year we discovered a large lump on one of Kyle's testicles.  While on vacation we had conversations with his pediatrician who said it sounds like a hernia.  And that's what it was.  And he had hernia surgery in September of that year.

Anyway, all in all we had a real good trip that year,  my mom even came up for a few days & joined us, lots of happy pics on FB, ...but thinking back it was a pretty stressful time.


Then last year in 2013, we hit the trifecta, we had 3 things to stress about last August when we went away.
(1) Kyle had the return of the mysterious right leg limp, and was happily limping quite badly throughout our trip and we had a doctor misdiagnose it the day before our trip which truly freaked us out.
(2) Kyle was slowly going up on a new seizure med, while slowly coming off another seizure med and was sleeping like crazy and when he was awake he went thru stretches throughout the day where he was zombie like. All these meds were controlling the seizures but we didn't like the Kyle they left behind. (In fact while on the trip that year we called his neurologist and said "this is pathetic. we are gonna pull him off one of the meds asap. we'd rather have our kid back and risk bringing on more seizures..." 
(3) we also had a surgery date scheduled for Kyle's VNS Surgery set for 2 days after we returned home from the lake. And I was truly stressed & freaking out about the surgery. 

Anyway, all in all we again had a real good trip last year,  my inlaws came up for the week & joined us, lots of happy pics on FB, ...but thinking back it was an extremely stressful time.

This year?

I'm worried about the weather!?  I'm worried about how to keep my autistic son busy on rainy days!?  I'm worried about a few seizures here and there?!

What a blessing to only be stressed about things related to autism & epilepsy. And even more mundane things like the weather or getting stressed about work in the days leading up to the trip...

That's stuff is nothing!  I can handle that stuff with my eyes closed. 

What a blessing it is not to have a crisis hanging over our heads...  Autism stims I can handle. Meltdowns in restaraunts I expect. Eating sand on the beach is par for the course.  Seizures and naps caused by bigger seizures really suck but we can deal with. 

This August just having our wide awake, mostly happy, bouncing off the walls, non limping, healthy (that's right I said healthy!) autistic & epeliptic son  on vacation is something to be treasured. 

And I need to celebrate that this year that I have the LUXURY of being stressed about the little things. The little things that typical parents worry about before leaving on a 10 day vacation....

The weather, money, work, and oh yeah, autism & epilepsy. 

Well that's all I got. Time to check the weather forecast AGAIN and then go pack up the minivan. 

BYE!


Autism Daddy Over & Out!


Monday, August 11, 2014

A Letter To My New Special Needs Teacher - 15 Things About Me (written by Jene Aviram)








written by Jene Aviram 

The new school year can cause a lot of emotional stress. Parents are filled with hope for a teacher who recognizes the strengths and brings out the best in their child. Children have a new routine, a new teacher and new friends in their class. The following letter is a valuable resource. It will help the teacher understand your child and will ease your child's transition into a new environment.


A LETTER TO MY TEACHER - FIFTEEN THINGS ABOUT ME

Hi, my name is ___________________and I am in your class this year. I want you to know a little about me. I’m nervous to be in your class because it’s new and I don’t know what to expect. I need some time to adjust and then I will feel comfortable. Please don’t judge me on my first few weeks. As the time goes by, you will be amazed by the skills you never thought I possessed. I sometimes look like I don’t understand. That’s just because I don’t have the same expressions and reactions as other people. I might not look at you when you talk but that doesn’t mean I didn’t hear you. I did. In fact I usually hear more than most people. As I become familiar with your classroom I will begin to shine. A great way to speed up this process is letting me know what to expect. Written or picture schedules for the day reduce my anxiety. A five minute warning before a change of activity can help me greatly too. You are my teacher and I look up to you. I want to succeed this year but I can’t do it without your help and most importantly, your belief in me that I can do it!


1. What is my general disposition?

_______________________________________________________________________




2. What am I really, really good at?

_______________________________________________________________________



3. What do I absolutely LOVE doing?

___________________________________________________________________



4. What do I absolutely HATE doing?

___________________________________________________________________




5. What academics are my strong areas?

_______________________________________________________________




6. What academics do I need a lot of extra help with?

__________________________________________________________________




7. Which skills would my parents really like me to work on this year?

______________________________________________________________________



8. How do you know when I’m getting frustrated?

_______________________________________________________________________



9. What can you do to calm me down before the storm hits?

________________________________________________________________________


10. Too late! The storm hit! What can you do to calm me down?

_______________________________________________________________________



11. What strategies work really well to get me to do something I don’t want to do?

________________________________________________________________________




12. What typically makes me laugh?

______________________________________________________________________



13. What consequences back-fire and don’t give the desired results?

_______________________________________________________________________



14. I don’t like consequences, but which consequences work well for me?

_________________________________________________________________________




15. I would also like you to know…

___________________________________________________________________________


---------------------------------------------------------------------------------


By Jene Aviram


This article is property of and copyright © 2003-2010 Jene Aviram of Natural Learning Concepts. 

Reference of this article may only be included in your documentation provided that reference is made to the owner - Jene Aviram and a reference to this site http://www.nlconcepts.com 

Jene is an accomplished author and developer of education materials for children with autism and special needs. She is a co-founder of Natural Learning Concepts, a leading manufacturer for special education materials and autism products. Visit the Natural Learning Concepts website at http://www.nlconcepts.com or call (800) 823-3430




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