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,

Wednesday, August 20, 2014

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



(originally written & published on August 20, 2014)


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

Saturday, August 16, 2014

Our Lake Vacation: A Day 3 Recap


(originally written & published on August 16, 2014)


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. 

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

  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box 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 12, 2014

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






(originally written & published on August 12, 2014)

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!


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

  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box 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!!

 _____________________________________




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







-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  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!!



Sunday, August 10, 2014

Tales of a Perfect Summer Saturday w/pics!

We had a perfect Saturday yesterday.

It started out with wifey & I being selfish and doing our own things. 

She went to a 90 minute yoga class at 9am while I stayed home with Kyle. 

Then at about noon I went out for a 75 minute,  7.5 mile run on a nice trail kinda near my house. 



When I got home wifey was finishing up cooking a few meals to take with us on our 10 day lake vacation.

We leave on Wednesday!

So pretty much all morning & early afternoon the king was home and we were busy so we left him "alone" to do whatever he pleased. 

I put alone in quotes because you never really leave a severely autistic and severely epileptic kid alone for more than two minutes at a time. 

But we let him do his own thing for the early part of the day which consisted of watching lots TV on the TV and on the iPad, eating some snacks holding his breath and meandering around the house. 

At about 3pm we started to pack for a late afternoon trip to the beach.  The ocean. We made plans to meet an old friend & her hubby & her son at a beach near their house on Long Island. 

We are used to NJ shore beaches where you park and the beach is right there. So wifey asked if that's the way this beach is. Cuz asking Kyle and Paula to walk a long way to the beach can be a recipe for disaster. 

Our friend said it was. 

So we trekked thru the typical weekend Long Island traffic and made it out to their beach at about 5:30pm. 

The parking lot was HUGE and still really packed considering how late it was. 

We find a handicap spot near the entrance and see that the sand is right there, but it's probably a 3/4 mile hike to get to the water. 

Ugh. After driving thru traffic for 90 minutes I was ready to throw in the towel. But wifey flagged down a beach patrol guy driving a golf cart type thing and asked him a few questions. 

And the next thing I know he is driving us in his buggy to our friends spot on the beach. 

We went 2 at at time. Kyle and I went first. He had a great time bouching thru the sand in the buggy!



Then wifey and doggie Paula came on the second "transport". 

The patrolman, Tony, even gave us his cell phone number so we could call him for a ride back to our car!

By the time Kyle first put his feet in the ocean it was 5:45pm. And the waves were rough!  He absolutely LOVED IT!  He got his ass kicked by a few HUGE waves!  But always came up laughing and smiling and running in for more!

I said to wifey "he's 11 and he's totally riding the waves!  that's totally age appropriate. that's how I looked at his age"

He had a great time in the water 


and had a great time on the sand. 


By about 7:30pm it was windy and it started to get a little darker so it seemed like time to make a move. So at 7:45pm I called tony to come get us and by 8:15pm we were back in the car and back in the road home. 

We hit even more traffic on the way home and we didn't make it home til almost 10pm. 

On paper driving for 3 and a half hours to spend 2 hours on the beach makes no sense. And normally I'd be grumbling a bit about that on the way home. But because he had such an amazing time then I had an amazing time and I barely noticed the traffic. 

 ;)

When we got home wifey gave him a shower. He had sand in every crevice. (way too much sand to clean him up properly before we left the beach). 

Wifey said after the shower Kyle planted a kiss on her cheek. That's not something he normally does. Wifey almost melted. 

15 minutes later and he was asleep and wifey and I ate some snacks and watched old episodes of "Scrubs" on Netflix until we both fell asleep on the couch. 

And that was the end of our perfect Saturday. 





Saturday, August 2, 2014

Is He Just Being a Jerk? Or Did He Have a Seizure?





Is he just acting like a jerk?  Or did he have a seizure that we didn't see?

Sometimes we don't know... and sometimes the answer is quite obvious...

Take today for example...

It was late afternoon on a Saturday. We had plans to go over my uncles house later for a bd party for his 13 year old son (who is also autistic but that doesn't matter for the purposes of this story) 

:-)

Anyway, wifey is cleaning up the house a bit and listening to the Beatles and watch old vacation photo albums on the tv...

Kyle is kinda ok with all this and she's singing to him and reading him books along the way...

All is right with the world...

I go jump in the shower upstairs...

I get out 8 minutes later to hear wifey yelling at the king...

"C'mon buddy that is so not cool!  Why do you have to act like such a jerk sometimes?!!!  Why would you do that?  I didn't give you my attention for 2 minutes and you do this!"

I yell down "What the hell happened?"

She says "I left him for 2 minutes to go downstairs and empty the dryer and while I was gone he peed all over the corner nook in his playroom!  Everything is soaked!  Blankets, books, the floor!"

I start walking downstairs saying "Calm down. Maybe he had some 'activity' that you didn't see"

"Activity" is our code word for seizures. Sometimes when Kyle has a certain type of seizure he'll pee himself. 

But as I finished that sentence "...activity that you didn't see" Kyle comes running into the living room all dressed and goes to jump on the couch. 

"Are those clothes soaked?!  Are those the pee pee clothes?" I yell as I try to stop him from also soaking the couch. 

Wifey says "No. That's the thing. I found him bottomless in his playroom laughing maniacally. Basically he took off his underwear & pants and peed all over the floor"

I said "Oh well that's definitely not a seizure. That's just him acting like a plain old jerk..."

And then I said to Kyle "why do you have to be act like such a jerk sometimes?"

But as usual he didn't answer...

That big ol jerk...

:-)

That's all I got...

The end... Just a jerky little Saturday evening slice of life post...

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