Friday, September 30, 2016

Why a Special Needs Parent Might Say "Yay for Bad Behaviors!"







I've been meaning to write this post for a long time now. It's about the strange balance and the weird trade-offs you have to make in your mind as a parent of a kid with both autism and epilepsy.

The idea for this post came about four weeks ago when we were on vacation in Lake George New York.

I think it was the last day of our week long vacation and we were eating breakfast at this restaurant that we have been to three or four times over the week.

And my son was starting to act out in the restaurant.

Let me take a step back and say that as autism parents for 13 years now my wife and I are well trained at restaurant situations.

So much so that as the hostess leads us to our table at any restaurant both of us already doing calculations in our head as to which side would be the best side for the king to sit on, who should sit next to him, do we need to move all of the ketchup and salt & pepper shakers off the table, should we ask for a booth instead of the table they put us at, etc. etc.

At this restaurant, on this particular day, they gave us a pretty perfect table for our situation.  :-) A booth where there was no booth behind his Majesty so there was nobody for him to mess with or potentially disturb.

However, there was a couple of paintings on the wall to the Kings right.










And throughout the breakfast between bites of pancakes and bacon his Majesty was trying to happily take the paintings off the wall.

And wifey and I were trying to redirect him back to his chocolate milk and his shows on his iPad.

After maybe the fifth or sixth time of him reaching for the painting wifey said exasperated "dude come on, leave that thing alone!"

And then she stopped and continued by saying

"but it is good to see some of the feisty kid  back. It's good to see you with a lot of energy and trying to push mommy and daddy's buttons"
And that right there is the weird balance between autism and epilepsy.

Before epilepsy, when we were dealing dealing with just a kid with autism we basically had a tornado and in our midst.

A high energy kid, bouncing off the walls, who can't sit still, with lots of stims and behaviors, and getting into lots of potentially dangerous behaviors... just your typical flappy autistic kid










That's pretty much what we had before epilepsy came into our lives.

Epilepsy joined the party in 2012 and a lot has changed with my son over the years a bit. In some ways for the better.  The king is a lot more mellow since he started having seizures.   That could be because a lot of the old-school anti-seizure meds are also mood altering meds that can mellow our kids out which can be a good thing

However, on this vacation in particular what we had was a kid who was having a seizure pretty much every four or five days. A kid who was on two anti-seizure medicines as well as the new addition of medical marijuana.

And so on this vacation we didn't just have a mellow kid, we had a kid who was sleeping way too much... and when he was awake, I hate to admit it but he was a little "zombie like". And I know this won't be popular but I blame the medical marijuana for that.

And when your kid is sleeping 12 hours a night, and then still napping two hours a day, and then kind of "zombie like" when he is awake you long for the days when he's pulling paintings off the walls in a restaurant.

And so towards the middle of that vacation we made an executive decision to pull the plug on the medical marijuana. (Holy crap we still haven't told his doctor about that yet!)

And slowly but surely throughout that week he got some of his energy level back and we got some of that fesisty kid came back and some of his bad behaviors back too. 

Yay for bad behaviors!

And by the end of the week he was back to trying to pull paintings off of the walls!

Yay!

That's about all I've got for this one.  This is just a short blog post that's been rolling around in my head since wifey made that comment about 3 weeks back!

I've written a little about this before, about the weird trade offs you have to make in your mind as a special needs parent.

And how you sometimes long for the crazy days, especially if the crazy days was typical behavior for your kid and showed more of your kid's personality, or if during those crazy days your kid was healthier.

Anyway, that's all I've got right now.  

And since school started we've got an even better balance going right now. He's awake a lot more, he's got good energy levels, and he's very happy, and he's only having a seizure every 7-8 days.  Yay, progress!

So right now we're not wishing for a return of the feisty kid with bad behaviors...  but knowing the king's ups & downs, when he has another down turn in a few months I'm sure we will be.

I'm sure in a few months we will be saying...
"Pull those paintings off the wall in the restaurant you crazy nut, be feisty...  you've got autism, that's what you're supposed to do!"

THE END
-- 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!!







Friday, September 23, 2016

The Strange Balance Between Autism & Epilepsy in My Kid's Life






(originally written & published on September 23, 2016)

I've been meaning to write this post for a long time now. It's about the strange balance and the weird trade-offs you have to make in your mind as a parent of a kid with both autism and epilepsy.

The idea for this post came about three weeks ago when we were on vacation in Lake George New York.

I think it was the last day of our week long vacation and we were eating breakfast at this restaurant that we have been to three or four times over the week.

And my son was starting to act out in the restaurant.

Let me take a step back and say that as autism parents for 13 years now my wife and I are well trained at restaurant situations.

So much so that as the hostess leads us to our table at any restaurant both of us already doing calculations in our head as to which side would be the best side for the king to sit on, who should sit next to him, do we need to move all of the ketchup and salt & pepper shakers off the table, should we ask for a booth instead of the table they put us at, etc. etc.

At this restaurant, on this particular day, they gave us a pretty perfect table for our situation.  :-) A booth where there was no booth behind his Majesty so there was nobody for him to mess with or potentially disturb.

However, there was a couple of paintings on the wall to the Kings right.










And throughout the breakfast between bites of pancakes and bacon his Majesty was trying to happily take the paintings off the wall.

And wifey and I were trying to redirect him back to his chocolate milk and his shows on his iPad.

After maybe the fifth or sixth time of him reaching for the painting wifey said exasperated "dude come on, leave that thing alone!"

And then she stopped and continued by saying

"but it is good to see some of the feisty kid  back. It's good to see you with a lot of energy and trying to push mommy and daddy's buttons"
And that right there is the weird balance between autism and epilepsy.

Before epilepsy, when we were dealing dealing with just a kid with autism we basically had a tornado and in our midst.

A high energy kid, bouncing off the walls, who can't sit still, with lots of stims and behaviors, and getting into lots of potentially dangerous behaviors... just your typical flappy autistic kid










That's pretty much what we had before epilepsy came into our lives.

Epilepsy joined the party in 2012 and a lot has changed with my son over the years a bit. In some ways for the better.  The king is a lot more mellow since he started having seizures.   That could be because a lot of the old-school anti-seizure meds are also mood altering meds that can mellow our kids out which can be a good thing

However, on this vacation in particular what we had was a kid who was having a seizure pretty much every four or five days. A kid who was on two anti-seizure medicines as well as the new addition of medical marijuana.

And so on this vacation we didn't just have a mellow kid, we had a kid who was sleeping way too much... and when he was awake, I hate to admit it but he was a little "zombie like". And I know this won't be popular but I blame the medical marijuana for that.

And when your kid is sleeping 12 hours a night, and then still napping two hours a day, and then kind of "zombie like" when he is awake you long for the days when he's pulling paintings off the walls in a restaurant.

And so towards the middle of that vacation we made an executive decision to pull the plug on the medical marijuana. (Holy crap we still haven't told his doctor about that yet!)

And slowly but surely throughout that week he got some of his energy level back and we got some of that fesisty kid came back and some of his bad behaviors back too. 

Yay for bad behaviors!

And by the end of the week he was back to trying to pull paintings off of the walls!

Yay!

That's about all I've got for this one.  This is just a short blog post that's been rolling around in my head since wifey made that comment about 3 weeks back!

I've written a little about this before, about the weird trade offs you have to make in your mind as a special needs parent.

And how you sometimes long for the crazy days, especially if the crazy days was typical behavior for your kid and showed more of your kid's personality, or if during those crazy days your kid was healthier.

Anyway, that's all I've got right now.  

And since school started we've got an even better balance going right now. He's awake a lot more, he's got good energy levels, and he's very happy, and he's only having a seizure every 7-8 days.  Yay, progress!

So right now we're not wishing for a return of the feisty kid with bad behaviors...  but knowing the king's ups & downs, when he has another down turn in a few months I'm sure we will be.

I'm sure in a few months we will be saying...
"Pull those paintings off the wall in the restaurant you crazy nut, be feisty...  you've got autism, that's what you're supposed to do!"

THE END
-- 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!!







Tuesday, September 13, 2016

Wifey's Letter to the King's New Teacher on 1st Day of School





Wifey always writes a great letter/email to the teacher on the first day of school introducing her to the king.  I thought I would post this year's letter because it's almost a little time capsule of where he was at when he started his 2016-2017 school year.  I guess it's the equivalent of 8th grade for him, but he goes to an all special needs school and is in an all autism classroom with an 8:1:2 ratio (plus several additional 1:1 aides)

Ok, so without further ado, here's this years letter which she sent in his backpack on the first day of school last Tuesday, September 6th.

As always, the names have been changed to protect the innocent.  :-)

Enjoy!

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



Dear E,

Hello & Happy 1st day of school!!!  We are AD & Wifey, K's parents. I wanted to introduce you to K... 

K is generally a very happy guy. He is very affectionate and loving. He loves greeting people, being around activity (not necessarily participating in it) swimming, swinging, snacking, books, music videos & his iPad. K understands everything although he may not present as such. He appreciates being spoken to respectfully and age appropriately and he will show the people that respect him his love in the form of hugs and kisses. 










Communication:
Although he is non-verbal you will soon see that he will get his point across. He will take your hand & lead you to what he wants, he will take your hand and fling it towards an item, he can sign "more", he'll touch what ever food he wants, he waves hello & goodbye, fist bumps & high fives when prompted. 


Toileting:
Sadly, K has regressed over the past 3 months with his toileting skills. (He urinates in his pants & also needs to "point it down" when sitting on the toilet or else there is a mess). We need to create a behavior plan for his toileting ASAP please. This has to include peeing standing up, since he tends to want to sit. His time sitting on the toilet needs to be watched or he will take too much time. I have tried training at home the same way I taught him in the past but it's not working. We all need to be consistent. So for now, he needs to be taken to the bathroom every 15 minutes. I can send in pull-ups but I really hate to do that. (I'll have him wear one for the first couple of days of school until things get started). Also, if you put the toilet paper in his had and tell him to wipe, he will wipe. He probably won't get himself clean but it's a start. 


Sleep / seizures:
K sleeps a great deal. We are not sure why. He may sleep because of puberty, boredom, medications, seizures or a combination of them all.  K often naps at school. We don't like it but we don't know if it can be stopped. Naps should not be encouraged. When K sleeps he needs to be watched very closely because that's when he has his seizures. K's seizures are generally petite - grand mal, the violent part lasting about 30 seconds the "aftermath" where he is less rigid, has unusual breathing, is slightly responsive & slowly coming out of the seizure can last another 30-45 seconds. (The school nurse is very familiar).










VNS device:
K has a VNS device (like a "pacemaker for the brain") on the left side of his chest, under the muscle, near his arm pit. When he has a seizure the divice will hopefully make the seizure less intense or prevent it all together. Furthermore, we have specific magnets that can be waved over the device for 5 seconds while the seizure is in progress to hopefully stop it in its tracks. It doesn't always work, but it's worth a shot. K's 1:1 aide needs to be shown how this is done. Actually, every adult in the classroom should know how to wave the magnet over the device. It's very simple & cannot hurt him. The school nurse knows all about this. I will send a magnet in a ziplock for the 1:1 to have on him at all times. 


Sensory:
Often bouncing on a yoga ball, swinging and chewy tubes help K regulate. His OT from last year, knows him well. 


Behaviors:
Behaviors come & go. He has been pretty easy going with me this summer. At times he hits - often out of excitement & impulse. It's always with a smile on his face & usually with someone he likes a great deal. K's hitting is never malicious. 


Little things:
K only drinks water out of a water bottle or fountain. He can eat with a fork but that's not my priority. K presents as "lazy" and needs to be pushed to be independent. Even little things like opening a door, opening a ziplock bag, a container and of course we have been working on dressing and bathroom routine for years. 


If you have any questions or concerns please do not hesitate to call me or K's Dad. We are always available. Our contact info is below


I have also included a communication notebook in K's backpack as well as snacks for school. 


Also included in K's backpack is an iPad (blue/black case that is used only for communication). 


In addition to K's backpack he has a "bus bag" where his personal Ipad needs to go back and forth with him on the bus. He needs his iPad for the hour long ride. (K travels an hour on the bus from home).  If possible, unless totally necessary, I prefer that he spends his downtime at school without his home iPad. (Since he is on it so much at home). 


I think that pretty much covers it, for the first day anyway ;-)

Thank you very much for your kind attention to this note. I hope it helps!

Best wishes,

AD & Wifey







-- 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!!



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