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






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!!



Wednesday, August 17, 2016

Why My Wife Doesn't Have a "Job"






2 days ago I wrote a post about how my wife went away for the weekend. And the point of the post was after 4 days of being alone with my non verbal son I realized what my wife goes thru as a stay at home mom (SAHM) with a non verbal kid.

How quiet it can be and how long she can go without having an actual back and forth conversation with another human being.

I ended that post by saying

Now I know what some of you were thinking, "why doesn't she get a job?"

Well that's what this post is about.

Why doesn't my wife get a job while my 13 year old autistic & epileptic son is in school.

It's a valid question I guess.

I'll admit that there's been points over the past year that I've wondered that as well and even suggested it to the wife.

Prior to this year wifey would drive my son to and from school each day so her school day was a lot shorter.


In an old blog post from back in 2011 I explained why she drove him...


She is a stay at home mom because she's accepted the fact that my son's crazy schedule could never be handled PROPERLY if she were to work. 
Because of this, unfortunately she lives & breathes autism 24/ 7 (where I get a 40 hour break each week at a glorious place called work). 
She drives Kyle to and from school everyday. We could get busing but this is our (her) decision and the thinking is that we can't put a non-verbal kid on the bus. You hear too many stories about non-verbal kids accidentally being left on the bus all day or worse... 

And in another old blog post from 2011 I wrote this about why my wife is a SAHM


When it comes to my wife getting a job... I honestly don't see what job that she could get for the 5 hours a day that Kyle is in school that would bring in enough money after taxes to make it worth her while...and what kind of job that she could get that would be so flexible with the weekly drama that is life with Kyle....not a week goes by where she isn't called about something... picking him up early because of an illness... going in early for a meeting.... dropping him off late after an early morning doctor appointment...  It never ends...

However, in September 2015 he switched to a new school... that we LOVE.  A new school, that is 30+ miles away.  A new school that you have to take a bridge and pay two tolls to get to.


So, since September we had to bite the bullet and put him on the school bus.

And it's quite a long bus ride. So he's out of the house from about 8am - 4pm.

So, yes on paper, she seemingly could get a job.











And every once in a while when the king is going thru a good stretch behaviorally I think "he's gone for 8 hours a day... So she could find a 6 hour a day job and still be home in time to put him on / take him off the bus"

But this week was a perfect example of why that's not always as simple as it appears to be.

He had two seizures while in school on Monday while wifey was still away with her friends so I received two calls from the school nurse. 


All those posts I wrote back in 2011 of why she's a SAHM?  Those were before he started having seizures.  Those started in 2012 at the age of 9.  Epilepsy is our bigger worry these days.

So I fielded those two calls from the school nurse and had to make that decision as to whether or not it warranted picking him up early or letting him stay for the rest of the day.

I made the executive decision (without checking with the wife) to let him finish out the school day.

However, I'm sure if it was on her watch, she would've called me at work (probably her first conversation of the day) :) and we would've debated whether or not she should go pick him up.

And wifey probably would have. And maybe I should have.

He's been going through a good stretch with the seizures lately but they always seem to come back with a vengeance. And when they happen during school hours these calls and these types of decisions can happen on a weekly basis.

So because of the Monday seizures she needs to pull him out of school early on Thursday this week to check in with the neurologist and find out why he's having more seizures. And I won't be able to take off work for that appointment so she'll be bringing him solo.  So if she had a job, she would need to take off on Thursday afternoon...

And then Monday night the king came downstairs and we realized the ring finger on his right hand was crazy swollen.  We have no idea how he did it.  But he likes to stick his finger in weird places and get it stuck, and he probably did that and yanked it out.  His two knuckles looked bruised.


We iced it and sent him to school on Tuesday, and both the school nurse and his nurse on the bus suggested that we get it x-rayed to make sure it wasn't broken.











On a side note...
God knows what they think of us at the school, not picking up our kid after two seizures and sending him to school with a possible broken finger.  But our thinking is, unless it warrants a trip to the hospital all he's going to do if he's home is sit on the couch and watch tv or nap, so he might as well be in school with more eyes watching him and a nurse right near by.

Anyway, so for a big part of the school day on Tuesday wifey was calling doctors, and getting a scrip for the xray faxed to the radiology department, etc. and we all went for the xray together when I got home from work (because getting xrays is a 2 parent job)

xray results, it's not broken

All this to say that her getting a job that meets our autism and epilepsy lifestyle isn't easy.

Could we use the money from a second income? Sure.


Do these emergencies happen all the time?  No, he can go months lately with no issues, no early school pickups, etc.  However, when they do happen it seems like they come in bunches.  And when he gets the common cold, he's usually out of school for a week.  That's just the way he is.  So she'd be taking off lots of time from work for all this stuff

Is there a job that wifey could find that could fit this crazy schedule?  Maybe, but it's not going to be easy.


And if she did get a job, she readily admits that it's got to be a job that takes her mind off of autism and epilepsy. She's not one of those moms that wants to do more autism stuff or special needs stuff as a career.  Nothing against the moms who can do that.  They are superhuman in our eyes, but she wants no part of that.











I wrote this in a previous blog post from 2013 and I think it sorta fits in here as to why wifey doesn't have a job and definitely doesn't want a job in the special needs field...


A couple of weeks back we had to bring Kyle for some medical tests in the early afternoon so I took the day off from work. 
The plan was to drop the king off to school in the morning and pick him up around 11:30am for his appointments. 
So I tagged along with the wife for her normal Friday morning routine.  
And she was full of energy. We dropped him off at school. 
Then we went for a quick food shopping trip. She was literally racing around the store. And I'm struggling to keep up.  
Me:  "Why are you running?"
Her:  "Cuz since he's only got a half day I got to fit it all in..."
Her agenda...
Food shopping, a quick breakfast, then the gym, a quick trip to costco then we pick up the kid. 
 
And she was on speed, full of energy... 
ME:  "Are you like this every school day?  How do you keep up this pace?  I'm getting exhausted..."
HER: "Yeah. I have a lot of energy in the morning. I gotta keep my mind busy. But late in the day I crash. Unfortunately I usually crash right before you get home from work..."
ME: "Why don't you crash during the day and save some of that energy for me, for when I get home?" 
HER: "Cuz I gotta keep myself, gotta keep my mind busy during the day. Otherwise I'd stay home and cry all day..."
She just said it completely matter of factly...
And I just nodded, smiled, and that part of the conversation ended and we went on with our day. 
But it stuck with me. 
Survival...
For wifey it's about survival. She tries to find joy in the little things, in the frivolous things and she keeps her mind busy...busy with autism things, of course, but also equally busy with non-autism things.  


Anyway wifey is much better about keeping her mind busy and off of obsessing about autism and epilepsy and worry. 
And maybe if she didn't she'd do that she'd "cry all day" or more likely she'd go a little crazy or fall into a funk or a depression...which is what happens to me sometimes.  
She's always the one of her autism mom friends trying to make plans and get out into the non-autism world as much as possible. 
Movies, lunches, dinners, bars to see bands, etc. 
And it helps her a lot. 
Others might think she's being selfish. And sometimes my brain thinks that too. 
But it's about survival. And in the grand scheme of things it makes her a much better, more patient, happier mommy and wifey. 

So I'll end it there.  That's why wifey's not working.  Now if there was some high paying job that fell in her lap I'm sure we'd have a discussion and she'd go for it.  

But to try to find the perfect job to fit her schedule to bring home a few extra bucks each month just isn't worth it right now.

Unless you've got the perfect job for her in a record store, or a radio station, or a music studio I'm sure she'd be all ears...  :-)

That's it... That's all I got.  This is like one of my old school posts.  It's literally all over the place!  Hope it makes some sort of sense!

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!!




Monday, August 15, 2016

Life w/ a Non-Verbal Kid w/ Autism Can Be Too Quiet







So wifey went away this weekend to the NJ shore with a couple of girlfriends.  So I've kinda been like a single autism parent from Friday afternoon until Monday afternoon.

And my 13-year-old son with autism and epilepsy was pretty darn great this weekend. He was mellow. And went with the flow.  I have absolutely nothing to complain about and wifey truly deserved this weekend away.

This post is just about something I noticed while kinda being a single parent over this weekend.  Basically, I leaned it's quiet when there's no other verbal person in the house for three days.

Of course I talk to the king but it's a complete one-sided conversation.

And if I'm being perfectly honest I probably don't talk to him as much as I should and definitely not as much as one would with a typical 13-year-old.

I will ask him lots of questions throughout the day and generally explain what I am doing and give him a blow by blow of what our agenda for that day is.

But I'll admit that quite a bit of the rest of the talking I do is just listing steps.








"Wash your hands, turn off the water, use the towel."

"Get your peanut  butter out of the fridge, grab a spoon, sit down..."

So when I saw my sister and her family on Saturday afternoon it dawned on me that I probably went close to 24 hours without having a conversation with another human being.

And we were home alone for most of the day on Sunday.

I took a vacation day today because wifey wasn't getting home until right before his school bus.   So while the king was in school today I was puttering around the house, doing errands, etc.  And at some point I realized that the first conversation I had with another human being in person in I don't know how many hours was with the waitress at the diner at 1pm this afternoon.

Basically having this weekend without wifey made me better appreciate what she goes through each weekday when I'm at work even more.

She's a stay at home mom (SAHM) and there are some days when I walk in the door from work at 6:45pm and she's immediately talking my ear off. Giving me a complete blow-by-blow of her day.









And I'm tired from work and probably not paying full attention to her and she gets annoyed.

 Every once in a while she'll say something like, "you're the first person I've had a conversation with all day. And you're gonna come home in a bad mood?  C'mon just fake it like you're interested for 10 minutes and let me talk.  You've been at work in meetings having adult conversations all day"

And up until today I didn't really appreciate what she was talking about or what she was going through. But after this weekend with so few conversations, I now totally get it and appreciate it.   I actually couldn't wait for her to get home from her trip so I could have somebody to have a conversation with!

And boy did she talk my ear off when she got home!  :-)

Now I know what some of you were thinking, "why doesn't she get a job?"

I'll cover that in a blog post tomorrow, but for now this is what I wanted to cover.  The fact that life with a non verbal kid with autism can sometimes be very quiet.  And you can go for long long stretches without a conversation.

Do other autism parents of non verbal kids feel this way?  You feel what I'm talking about?  Or is this something that only single parents deal with?  Or I guess if you're a single autism parent, then you have to work so you have conversations while you're working?

So maybe this is only a SAHM autism mom thing?

I dunno.

All I know is it was really quiet around here without wifey.  And I will try to be better about listening to her when she talks my ear off when I first get home.  :-)

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, July 12, 2016

Autism Service Dog Program Eliminated?! Help Save It!






As some of you may know, we have an autism service dog for my son.

My autistic son is 13 now but we got our precious dog "Paula" 6 years ago when he was 7 years old, and at his most difficult behaviorally.  And Paula was a godsend and extremely helpful to us.

We got Paula from an amazing organization called Heeling Autism. It was an offshoot of the long-standing not-for-profit Guiding Eyes for the Blind (GEB) 

GEB had a long and storied history of supplying guide dogs to the blind population for the past 60 years.
Paula's graduation picture

And back in 2008 they launched a program that took guide dogs that weren't a right fit for working with the blind, and they retrained them to work with kids with autism and gave them to these families for FREE!

I wrote all about our experiences with Paula and the organization back in 2011 on my blog post, "The Story of Our Autism Service Dog Paula" that you can read HERE.  I encourage you to go over and read that for more of a blow-by-blow of how we got her and how she helps.

In fact I really think you should read that one before continuing on with the rest of this post.

Go read it.  Now!!  READ IT HERE!

We will wait for you, and while we are waiting we'll look at some pics of some more cute Heeling Autism service dogs doing their jobs.







ok, are you back?  Sounds like a pretty amazing program, right?  Cute dogs, right!?

The one thing that always stuck with me over the years about the HA program was the amazing trainers.  As I wrote in that post:


the 3 trainers we worked with were AMAZING!  They somehow knew more about autism and our daily struggles than many people / even experts in our autism world...  And they’ve only been doing this for 4-5 years.  Before that they were blind guide dog trainers.  Anyway…  AMAZING women.

Well the reason I'm writing today is that the Heeling Autism branch of GEB is being eliminated.  That's right the amazing organization that you just read about is going, going, gone!

And this makes absolutely no sense to the 70+ families who have received the miracle of a service dog from this organization.

The reasons that have been given by GEB of why the program is being eliminated are frankly ridiculous.

What they are stating is that the program is too expensive and wasn't self sustainable in its current model.
Yet, Heeling Autism costs less than 1.5% of the organization’s total annual expenses, including less than 50% of the postage/mailing services and less than 23% of the printing/publications expenses.

And worse of all, GEB gave nobody any indication that the program was in trouble.

The families who have received these dogs would gladly have fundraised like crazy if we knew there was a problem. But we were never given the chance.

GEB is trying to appease the autism community with plans to instead offer therapy dogs to schools. 

Saying that clearly undervalues exactly how monumentally helpful and life-changing these "service dogs" have been to the 70+ families that have received one.

Can you imagine saying you're not going to give a blind person his or her own guide dog but instead going to put one dog in a group setting for a bunch of blind people to benefit from?

In both the blind and autism community there is a huge difference between a therapy dog and a service dog trained to perform very specific safety oriented tasks. 

For many of us having a service dog saved our kids lives on countless occasions.

For some of us the idea of going on a plane or going on vacation was impossible with their autistic kids until the service dog came into their lives.

However, the board of directors at GEB makes this seem like a done deal.

The Heeling Autism program as we knew it will be eliminated after they graduate dogs for the 10-15 families that are on their wait list.

(Meanwhile, they shut down their wait list a few years back because it grew too long and they didn't want to dedicate more trainers and dogs to the Heeling Autism program)

After those wait list families get their dogs GEB says they are moving towards this therapy dog in the classroom model.

And there's a bunch of us who are trying to reverse this and implore them to go back to the current model.

And this is where you come in.


A petition was started by graduates (a part of a team with either a guide dog or autism service dog), staff, volunteers, donors and members of the community who believe strongly in the Guiding Eyes mission, and we’re concerned about the direction Guiding Eyes has taken under the current leadership. The abrupt elimination of the Heeling Autism program is just the tip of the iceberg.  

So we started a petition to Save Heeling Autism that you can find HERE or by clicking below.




So I implore you all to please sign it, and share it (using #SaveHeelingAutism), and post a comment on it.

One last thing to mention, we autism families never wanted to make this a competition between the blind and the autism communities.

They both deserve service/guide dogs and GEB has plenty of dogs to go around.


And while the CEO is using the need for GEB to operate as a financially responsible organization as a reason for Heeling Autism's elimination, they have recently launched (and seem to have enough dogs for) a new program called "Running Guides" which is dedicated to training guide dogs to help blind runners run long distance races.

Saving the lives of children on the autism spectrum by preventing them from running out into a busy street, or wandering away to be lost, drowned, or even killed, is arguably an equally worthy cause.

Also, as any service dog trainer will tell you training a dog to run those long distances will almost definitely shorten that dogs working, service dog life.

So we implore the Board of Directors at GEB to reverse their decision and reinstate the Heeling Autism program to its current model. And if possible to put even more resources towards the autism service dog program.

And when you sign, comment, and share the petition you'll see a lot of the other comments.  And you'll read a lot of negativity.  Yes, things have gotten a bit nasty over at GEB.  There has been a lot of staff turnover and turmoil.

Just last week the long time head veterinarian was abruptly fired.  He worked at GEB for 26 years and knew every dog, and every dog recipient and their family (both the dogs for the blind & the autism service dogs).  

Many of us think that his firing is in retaliation of this petition as his wife is the head trainer of the Heeling Autism dogs, one of those amazing trainers I wrote about above.  

But we feel that it's not too late to turn this around!  Please sign, comment, and share the petition like crazy.

Thanks!  Now here's two more cute doggie pics for ya of the king and his princess "Paula"


Summer 2010
Summer 2016

Wait, here's the petition one more time!  #SaveHeelingAutism  Please sign, share, tweet, etc!  You can also reach the petition at www.saveheelingautism.com

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!!




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