Sunday, November 29, 2015

Medical Issues w/ a Nonverbal Kid: If Only We Could Ask "How Are You Feeling?"

It's Sunday at 8:47am and I'm having coffee in a quiet house watching the king sleep on his seizure camera / monitor

As you all know the king has autism and epilepsy. 

On a smaller scale he also has a bit of hypothyroidism. He is on medication for all three of them. 

And as you can imagine, the epilepsy is the scariest the bunch. The autism I can deal with. The hypothyroidism is a mystery and only truly shows up in blood work. We see none of the usual signs of it. 

But the epilepsy can be scary.

And the king is going through a relatively good stretch with very few seizures in the past few weeks. That should make us extremely happy. And it does.

However, he's also been sleeping 14 hours a day for the past few weeks as well. 

He'll get up and stay up for four hours, then take a two hour nap then get up another four hours, and then take a one hour nap and then be up for two more hours and then go to sleep for the night. 

That's pretty much been his pattern the past few weeks both at school and at home. And it's kinda pathetic for a 12-year-old boy to be sleeping 14 hours a day. 

When he's awake, for the most part he's himself. Maybe a little more lethargic than usual. 

But the constant sleep is getting in the way of his life. 

And there could be a variety of reasons that he's sleeping so much. 

He could be having seizures that we don't see when he's awake or in his sleep. And lots of seizure activity can make one sleepy. 

Or the tiredness can be a side effect from a new epilepsy medication that we're increasing slowly.  (but I don't think it's that because at the same time we're reducing another seizure medication slowly so the sleepiness from the two meds should balance out) 

Or maybe his thyroid levels are off and he's due for an increase in his Synthroid/thyroid medication. 

Or he could just be a typical teenager and is just lazy and is going through puberty. 

Or it could be a combination of all four of those. 

But the fact that we have to guess is the hard part. 

Sometimes living with a nonverbal pretty much noncommunicative kid, you forget that the rest of the world doesn't have to guess. 

They can just go up to their kid and say "what do you feel like?  Why are you so tired? Is that medication giving you a headache? Are you feeling nauseous from the medication? Is that why you have no appetite?"

I'm written many times before that I am pro-medication for a variety of different reasons but that doesn't mean that reading all the side effects doesn't scare me. 

And sleepiness is just one of the side effects that he may be experiencing from the meds. Who knows if he's having any of the other side effects?  

Feeling achy, headaches, nausea? 

Or one of the ones that is almost always listed on anti-seizure medications is possible depression. And a sign of depression is lots of sleep. But how do we know if our nonverbal, non communicative kid is depressed?

And it's so exhausting that the fact that my wife and I have to constantly be detectives to try to figure out why something is bothering him or even if something is bothering him

Right now we have to weigh whether or not that significant amount of sleep is really an issue.

 Because as I mentioned he seems to be having seizures which is the most important thing I guess. But it seems like his quality-of-life is being hindered by all the sleeping. 

So is this an emergency situation?  One that warrants more doctor visits and blood work and medication tweaks and tests? Or do we just stay the course and see what happens?

Basically we have to decide is this a crisis?  Or just a bump in the road?

And it feels like we have to make those kind of decisions every couple of months. 

We get past one small(?) "crisis" and another one appears. 

In fact it almost feels like we've been down this exact road before. 

We reduce his seizures but we get increased sleepiness. 

We figure out the sleepiness part and his aggression increases. 

We try to tackle that and the seizures return. 

And again it's all based on guesswork from mom and dad and doctors. 

I wonder how many different period of crisis in his life could have been avoided if we could ask him how he felt. 

I wonder how many wrong turns wifey and I have made because he couldn't tell us how he felt. 

I know lots of parents of non verbal kids always say they wish they could hear their kid say "I love you". 

That would be nice but I'd be much happier if my kid could say...

"Mom I feel dizzy."

"Dad, my legs feel really achy since we increased that new medicine"

"Mom, I'm feeling really tired." 

"Dad, I'm not hungry. I'm feeling nauseous.  Stop trying to force feed me popcorn!"

That would be my dream!

Ok I'm gonna end it there. 

I'll just end this by saying that epilepsy sucks and me and wifey having to be detectives all the time (and bad ones at times i suspect) sucks which means that the nonverbal part of autism really sucks!

Gotta go!    It's now 9:33am and his majesty is finally starting to wake up after 11 hours of sleep. 



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Monday, November 23, 2015

Autism Parent Holiday Tip: Drink Alcohol & Skip the Meal :-)

OK. I'll come clean. I purposely used that title to get your attention and to get you to click. Guilty of click bait I admit it!

However the headline is partially true.

Wifey went to a parent support group at the king's new school last week and they talked a little bit about surviving the holidays with special needs kids. 

And wifey told her story about how last year she had one of her best/calmest holidays since the king was born. 

As she told it, what she realized is the most frustrating part of any holiday for her is that she really never has a chance to sit down and enjoy her meal.   He's not always being Mr. Destruction, but when 20 people are sitting down to eat, he's always running around.  And poor wifey is always running after the king. 

Sure, she and I try to tag-team and I'll eat first and she'll watch the kid and then she'll eat and I'll watch him or vice versa. 

But while you're eating it's always guilt ridden because you're wondering when you're going to get a tap on the shoulder from your spouse saying "times up... now you're on king duty and it's my time to eat."

So last year wifey put it in her head that she wasn't going to worry about eating at all. 

There's always going to be leftovers she figured. And sometimes she enjoys eating the leftovers on our living room couch at 10:30 at night by herself better anyway.   

So, she got it in her head that she would follow his majesty around and do whatever he wanted to do and if that involved taking a nibble of food here and they're great, and if you that meant sitting on the staircase playing with his iPad for 40 minutes that's what she would do as well. 

She took food out of the equation. And instead hung with the king... and yes had a few drinks. Yes that's right, only a few drinks…only a few drinks on a completely empty stomach :-)

And she was feeling mighty good while only the first course was being served... and the king had his moms full attention and was happier than usual. 

She did this a little bit on Thanksgiving, but she liked how it worked out so much that she really kicked it into high gear when she did this on both Christmas Eve dinner at our house and Christmas Day dinner at her sister's house.  
Let me just say that on both of those days she was feeling pretty, pretty pretty, darn good. 

I don't think she's drank two days in a row like that since the infamous college years.  :-) 

Her drinks of choice over the holidays: beer and Malibu rum with seltzer. 

And it's not like her and the king were sitting alone the whole day.  She would follow him around, and various family members would jump in and join them in his playroom, or on the staircase, or in the living room, or wherever they were.

And I still tag teamed and helped out, and joined them a lot too... and refilled wifey's drink when necessary... :-)

Now, the lesson here for you guys and for the folks in the support group isn't that drinking made everything better 
(although it did make things a wee bit better) :-)

The lesson here is that when she changed her expectations of what makes a good holiday she had a better time and the king had a better time. 

And you would think, why didn't you guys change your expectations sooner?  Well it's hard.  We both come from big Italian families.  And the meal is important.  Sitting down to the actual meal (whether it's Thanksgiving, Xmas Eve or Day) is what it's all about.  Plus we both LOVE food.

So, we've slowly been changing our holiday expectations & traditions over the years... and dragging the family along with us.  I wrote last year about 5 adjustments to holiday traditions that we have made over the years (read), the biggest one being that we always had Christmas Eve at our house and a few years back we started catering in instead of cooking.  

So based on the success of last year I guess you could say that we've added a 6th adjustment to our holiday tradition.  Wifey is not going to worry about sitting and enjoying her holiday meals.  Instead she is going to have a few drinks on an empty stomach, cater to his majesty, and then have her meal at later that night while watching "Love Actually" on Netflix.


Sounds pretty, pretty, pretty good, doesn't it?

Happy Holidays All!



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Monday, November 16, 2015

A Salute to Young Adults That Work w/ Special Needs Kids & Adults

So this post is a salute to the people who work with our special needs kids.  Especially the young people.

This post has been bouncing around in my brain for months but I've been too busy or lazy to write it. 

This post is about the young people who choose to work with our special needs kids. And how I am impressed by them, how I'm in awe of them, how I salute them. 

And yes it's about the teachers, of course big props go to the special needs teachers. The King's had a lot of great teachers over the years. He's got a great one now.

But this post isn't really about them. Teachers are older and they knew what they want to do with their lives.  I'll cover their awesomeness in a future blog post

This post is about all the young people who work with our special needs kids and adults, sometimes for little more than minimum wage, at music therapy, swimming at the Y, in group home settings, etc.

I've been meaning to write this post for a long time. Every Sunday when I take the king to special-needs swim the idea for this post pops back in my head.

The king has had a new swim instructor since September.

He's probably 19,20 years old. And is he the greatest swim instructor for teaching stroke technique? No probably not...

But the whole 30 minutes that he has the king in the pool he is talking to him, he's smiling at him, he's looking at him under the water with his goggles on, and he's laughing a lot.

Just a sweet kid.

Wifey went up to the guy that runs the program to pay this instructor a complement. And this guy is so used to hearing complaints that he immediately thought that's what was coming. But wifey said, "nope, he just said he's a sweetheart and I wanted you to know..."

And that made me realize that you only hear about people that work with special needs kids in the news when something really really bad happens or when the instructor somehow has some amazing breakthrough and the kids start speaking or walking something because of him/her.

And in the middle are the thousands of people who work with her kids but a daily basis, and don't bring on miracles but just do their job really really well with a smile on their faces.

So, this post is about these people... 

Once again, going back to the pool at the Y... every Sunday while the King is in his one on one swim lesson about 30 special needs kids ranging in age from 7 to 20 get in the pool for half an hour as part of their three hour "Sunday Fun Day" program. This is basically a three hour program that their parents send them to on Sunday mornings so they can have some socialization and so that mom and dad get a break.

And every Sunday I see these kids and I see the people who are working with them. And I see them in some pretty uncomfortable situations like in the locker room. 

And some of these workers on the surface look like really really rough young adults. I don't know how else to say it but they look like the type of people that you wouldn't want to mess with.

Now what made these people decide to work in this environment? These jobs can't be paying any better than McDonald's or a fast food restaurant.

But here these rough looking young adults are, helping big special needs teenagers go to the bathroom, sometimes even wiping their butts.

And here they are in the locker room helping 17-year-old boys get dressed. And talking to them roughly, but appropriately, 

"come on Allen no more showering it's time to get in the pool"

"Bill, let's go! No more sitting on the toilet bowl!"

People on Facebook are always complaining about this young generation about how self-centered they are but I just don't see it. The young people we see in our circles couldn't be nicer. And seem a lot more tolerance than the older generation.

I will readily admit that I wouldn't have wanted to have a job like that when I was in my late teens early 20s.

I would've chosen the fast food restaurant over working in a special needs camp in a heartbeat!  I still probably would.  

So who are these people?  And what makes them decide to do this work?

They could be like my niece & nephew.  They could have a special needs kid in their lives.  Maybe a brother, sister, cousin, etc.

My nephew worked at the special needs day camp that the king went to this summer.  And after one day he said incredulously, "some people just don't know how to interact with these kids?  what is wrong with them?  it's not that hard!"

I didn't say it to him at the time, but I said to wifey later that night, "that's cool.  he thinks all people should know what to do around these kids, but that's just because he's had the king around all his life.  but i wouldn't know how to interact with those kind of kids when I was his age?"

And I know some of you are thinking "what about the volunteers?  there are some young adults that volunteer to work with our kids."

Yes, many of them deserve a salute too, but I gotta admit I'm more impressed by the people who get paid poorly than I am with the volunteers who get paid nothing.  That's because some volunteers are in it for college credit, or to hit some donation hours quota in their HS, or because it will look good on a college application.  In September you see a lot of fresh faced volunteers, but the people that are still there in December are in it for the right reasons.

But again, I'm more impressed with the people who choose to work with our kids, sometimes getting them dressed, and wiping their butts, for the same amount of money that they could be making serving burgers and fries with their peers.

Who are these angels?  

Again, they are not miracle workers, they are not having any huge breakthroughs with their special needs clients, but they show up for work every day, have tolerance, and have a smile on their face for the most part.

Anyway, let's wrap this post up...

So, my 2 big takeaways for this post are:

1) think about it, the youth of this generation get a bad wrap, don't they?  They seem to be a lot more tolerant and open to people with special needs than previous generations.


2)  when you think someone is doing a good job, tell them, and tell their boss!  Bosses are so used to hearing complaints about their employees from the public that getting a compliment can make their day!

That's it.  Over and out!



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Thursday, November 12, 2015

Parents, We All Need a "Gandalf" In Our Lives

The king had off from school yesterday for Veterans Day and wifey and he were home alone all day. So as I was driving home from work last night I was a little worried about what I might be walking into. I had a suspicion that it might've been a rough day for wifey. 

And I was thinking on my drive home,  "I'm gonna make sure I'm in a great mood when I get home. I'm going to try to be her Gandalf!". 

No that is not a lord of the rings reference. I'm one of those wackos who's never seen or read any of the Lord of the Rings books (and unfortunately not for the reason that Joey Tribbiani says above).

Gandalf is a reference from the TV show "Friends".

There was an episode of "Friends" a long time ago where Ross and Chandler were so excited that they're college friend Gandalf was coming into visit. 

According to Ross & Chandler, Mike "Gandalf" Ganderson was a party animal and made a fun time out of everything.   Watch this clip and it will explain everything.  Seriously watch it, it's less than 90 seconds and it will setup the rest of this blog post...

And in the episode you don't even meet Gandalf.   He canceled on them but this episode and this concept of a friend who brings a party with him wherever he goes has stuck with wifey and me since we first saw that episode back in 1997.

We've been using this Gandalf reference for years...long before the king was born. 

We'd be planning a night out with some of our friends and the plans inevitably would morph into dinner and a movie or something fine like that. But we'd say to each other something to the effect of "We need to find a Gandalf and do something different!" 

And so as I was driving home thinking about being the wife's Gandalf last night I realized that for the most part she's pretty much my Gandalf. 

She's always trying to make fun things out of nothing. Always looking to go out and have fun as much as possible.   I may give off the impression of being a fun-loving party animal on this blog :-) but I can be a real stick in the mud and get stuck in a rut.

And sometimes we will have a sitter lined up and I have no ideas, and barely want to leave the house.

But she's my Gandalf and is always trying to get us to do fun things, go see bands, go into Manhattan and walk around Greenwich Village like we did when we were younger...and, for wifey, if the night involves staying out really late and having a few cocktails even better.  :-)

And while I might be a stick in the mud sometimes, and she's my Gandalf, when we go out with other couple friends I think we might be there Gandalf's because even when I'm a stick in the mud with wifey I can be a stand-up comedian when there is another couple involved... (poor wifey, she gets the worst of me, huh?)

And when we go out with other special needs parents I think we are sometimes their Gandalf's because talking about our kids is the last thing wifey and I want to do when we have a sitter and a chance at a fun night out!

I sometimes think that people see us as the party animal couple, and it's mostly because of wifey, although I can still "bring it" sometimes.  :-)

And I think some of our friends (and family?) maybe they think that we party too much, and are looking to go out too much.  And maybe that is true... but I've written about why we try to go out on date nights as a couple as much as possible before (READ) and I stand by that.

And if we had typical kids I'm sure we'd go out a lot more... that's just the kind of couple we were, and that's the kind of couple we are trying to continue to be.

So anyway, I'm rambling, let's wrap this up.

So wifey is my Gandalf, but sometimes when she is going thru a rough stretch I need to be better about being her Gandalf!  That's something I need to work on.

And being someone's Gandalf is not always about going out & partying & drinking...  In my mind being someone's Gandalf (should I trademark that phrase?) is just about bringing energy and fun and a party into anything you do, whether that be blasting Foo Fighters tunes while doing the dishes together or folding the laundry together while watching "Lip Sync Battle".

And where is my son in all of this?  Where is his majesty?  Well I think we both take turns being his Gandalf, but once again it's mainly wifey.

She is a better Gandalf than I am.

My Thanksgiving Resolution is to be a better Gandalf to all the most important people in my life.

And you guys count as important people in my life.  I hope through my writing that I can be your Gandalf sometimes.

That's it.  That's all I got.

I'm so curious if people are gonna get this and if this post is gonna go viral, or if people are gonna be confused by the title and no one is going to read it...

Ideas for a better title are welcome!




  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!!


Sunday, November 8, 2015

"Why is My Kid the ONLY Special Needs Kid Behaving Like This?"

I heard this kid screaming at Special Needs Swim yesterday.  I look over and see this little guy, maybe 3 years old screaming his head off in the very shallow end of the pool as the instructor is holding him and trying to get the majority of his body wet.  

And then I look up and see mom & dad standing on the lip of the pool and wondering what to do.  Of course they were worried about their kid.  But I knew there was more behind that look, more behind their concern.

 They were looking around sheepishly, concerned that maybe his screaming was disturbing the other kids & parents.  (it wasn't).  I think they were also looking around to see if there was any other kid carrying on as much as their kid was.  (their wasn't).

And the whole scene brought me back to the young days with the king.  I recall taking a raging lunatic with me to swim, and him screaming & crying both before and after the swim lesson.  The difference with his majesty was that once I shoved him into the pool he had the time of his life.

Anyway, I saw those parents yesterday and I felt what they were going thru.  And knew what they were probably thinking...

"Why is my kid the only special needs kid here that is behaving like this?"

I wanted to go over and give them a hug and tell them it gets better.

Better in 3 different ways...

1) your kid will probably end up loving swimming.  it may just take longer for him to figure that out probably due to his sensory issues...

2) in a few years you won't care what other people think, and you probably won't have time or energy to compare your kid to other kids.

3) And if for some reason your kid doesn't like swim you'll learn early on exactly when to throw in the towel and quit and move on to something else.

With the king we stuck it out with swimming because he was a great swimmer and the actual time in the pool he had a blast.  He just went thru phases where he'd be raging before, and I'd look like a psycho literally throwing a screaming kid into the deep end.  And after when he'd be raging again and the shower & locker room scene probably looked like an assault to some outsider.  But the swim we loved.  And I continued to look around and compare my kid to others and think...

"Why is my kid the only special needs kid here that is behaving like this?"

But it became less and less.  And now he's a pro at it and I've heard several parents whisper, "i wish our kid could swim as good as that kid.  and look how much fun he's having..."

But to this day we try activities with the king, and I'll revert back and become those young parents again... and I gotta admit I hate that feeling.

We have tried special needs baseball several times now.  And the same thing happens every time.  Every kid has a neurotypical "buddy" and it seems like every other special needs kid is getting it, and getting something out of this baseball experience.  And my kid is the only kid wandering around in the outfield, or sitting on the pitcher's mound, wanting to rest or take a nap.  

And because of that he almost never had the same buddy two weeks in a row.  The buddy's wanted to have fun too... and none of them ever "got" my kid or saw his personality.  They just saw this zombie boy who was wandering around and hard to handle.  And very often the leaders would ask me or my wife to step in and help the buddy.  

And we'd be the only parents out there.  All the other parents were sitting on the bleachers cheering their kids on or chatting with the other parents.

And I'd be surveying the situation from 3rd base thinking... 

"Why is my kid the only special needs kid here that is behaving like this?"

And I hated feeling like that.  

And I know, I know some people will read this and think "it's always about you isn't it?  shouldn't it be more about your kid and what he needs?"

To those folks I'll say that if the king showed any small glimmer of enjoying the baseball, I'd have stuck it out.  But the king wasn't getting anything out of it.  

And if it was teaching him some amazing skill (like swim) or if it it was more therapeutic (like music therapy) we'd have stuck it out.  But it wasn't either of those things.  It was baseball.  It was supposed to be fun for both kids and parents.  And it wasn't for either.  So we threw in the towel.

I guess I'm writing all this to tell those younger special needs parents that I saw yesterday that it will get better... for the three reasons I mentioned above... the most important reason being that as an older wiser parent you'll know exactly the right time when to throw in the towel so that you don't feel that feeling or have that thought...

"Why is my kid the only special needs kid here that is behaving like this?"

That's it.  The end.


  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!!


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