Monday, June 29, 2015

Today was a Rough "Manic Monday" for Kyle -- Includes video!!

My 12 year old son with autism has this week off from school and then his summer school / extended school year (ESY) starts next Monday. 

So this week is a bit of a wild card as I've got to work and Kyle has nothing major on his schedule so that puts a lot of pressure on Wifey. 

And day 1 is in the books and it was quite a Manic Monday according to Wifey. 

He had 3 small seizures this morning, but she decided to take him to the movies in the late morning. 

That went pretty well according to her but mainly because she asked if it was ok if she brought his big green ball into the theater. 

They said yes so he spent most of the movie bouncing on his big green ball  

After the movie they went to Wifey's sisters house where he proceeded to break a vase or something. 

Then they came home around 3:30 and Wifey had some respite because thanks to our Mediaid waiver she had our aide "Deirdre" scheduled for a few hours this afternoon. 

However Kyle's pattern these days is that he's very aggressive with her, even more so when Wifey leaves the room to do some laundry or go take a nap, even worse if she leaves the house to go shopping or sonething. 

Today wifey was fighting a migraine so she excused herself to go take a nap and Kyle proceeded to beat up Deirdre the whole time Wifey was gone. 

And Deirdre couldn't be nicer. She's a friend of wifey's.  They were in the same mommy circle of friends a few years back... And she's been working with Kyle for over a year now and he used to be all lovey dovey with her. Lately, however, he's been really rough on her. And it's really sad. 

Wifey thinks it might be that kyle is finally, after all these years getting very attached to his mommy. He is very lovey with his mom lately and she thinks that maybe he acts out when she disappears. 

After all those years of her wanting our son to miss her. This is not how we envisioned it. A 12 year old beating up this nice woman that just wants to hang out with him. 

Anyway Wifey excused herself shortly after me getting home from work, but first she said "if I were you I'd take him out for an hour or so...maybe break the pattern of wanting to be with mommy"

So I took him grocery shopping to get popcorn, baby food (this is how we give him his meds), strawberries, and milk. 

And he was LOUD in the store and he was holding his breath like a maniac. You can hear video of our supermarket trip here.




After grocery shopping it was after 8pm and he was happily manic the whole time. So we came straight into his bedroom, I gave him melatonin and put on his "Sesame Street Sleepytime Songs and Stories" DVD and watched him run around the room like a crazy person. 

You can watch that video here.




But like always, 29 minutes later like clockwork Kyle is always asleep before Bert & Ernie finish singing the "Imagination Song." 


I

t's now 8:43pm. Kyle is asleep. Wifey is asleep. And i've got two episodes of Nurse Jackie in the DVR that are calling my name.

So that's all I wanted to write. I just wanted to tell you about our Manic Monday. 

Goodnight all!

Autism Daddy OUT!

:)
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  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, June 23, 2015

Special Needs Parents, Don't Be Fooled by Your Friends' Happy Family Pics, It's All Smoke & Mirrors









My apologies to this family.  I don't know who they are, they just popped up when I googled "perfect family pic" :-)


(originally written & published on June 23, 2015)

I hear from lots of special-needs parents who sometimes complain about seeing their friends post pictures of their happy, typical kids on Facebook, especially in the summer and around the holidays. 

All those smiling pics of communions and graduations and backyard barbecues. All your friends with typical kids seem to be having the time of their lives!

As a special-needs parent it makes you want to pull your hair out sometimes or unplug your computer and throw it out the window or disconnect from Facebook. 

Well I'm here to tell you that those pics don't tell the whole story. 

Everybody on Facebook post only the best about themselves. That's kind of why my page was so rare when I started it.  Nobody really complains or rants on Facebook about their lives. They rant about politics but nobody talks about or shows the insanity that's going on in their household. 







So while you're friends with typical kids might seem happy in all those pics. Remember that those are the pics that they want to share with the world. 

But in each of those households is probably some drama, or some issues.  Maybe not as big as your issues with your kids and your family but these issues are big for them. 

Maybe that marriage isn't as happy as it seems in the pics. 

Maybe the kids aren't the perfect angels that they appear to be or maybe they have underlying medical issues or behavior issues that you don't know about and that the pics don't show. 

Now I'm not rooting for this. I want all my friends with typical families to have happy amazing perfect lives just like I'd want that for my special-needs parents to have happy amazing perfect lives.

 I'm just letting you all know that those pics on Facebook most likely aren't even close to showing reality.







And admit it you are guilty of that too. With pics of yourself and pics of your special needs kids. 

Come on admit it you only pick the best profile pics of yourselves. When you're all made up for a wedding. And the lighting is perfect and the camera is that just the right angle. That's the reality you put up of yourself on Facebook but that's not what you really look like. 

And as far as your special needs kids?  Admit it you took 40 pictures of your asd kid at the playground and posted the one fleeting shot of him looking in the camera and sort of smiling. 

So in that way you're fooling the outside world as well. 

And that's okay. 

Wifey is the master of that recently. 

She's been taking the king on day trips after school the past few weeks. To playgrounds, beaches, parks. 

And she'll whip out her iPhone and take 50 pictures of our son at each of these locations. 

Then at night when he's asleep she'll settle in with her iPhone and pick the best eight or nine and crop them and use those fancy color features on FB. And she makes really really artsy looking pics that all her friends love. 

And the King looks so peaceful and happy in almost all of those pics.






And I'll admit it I was even fooled. I would look at those pics and think "look what a great time they're having, look how happy my son is, I'm jealous, I wish I could be with them."

And then a few weeks back I went with them to a park with a scenic overlook. And found out that her photo sessions were exhausting

My son was still his typical autistic self. Holding his breath, doesn't want to walk, wants to sit on the ground, pull blades of grass out, maybe nibble on a blade or two. 

But Wifey kept snapping pics and singing songs and getting him to smile once in awhile. 

Now I don't want you to think that she drags him places he doesn't want to be just to be a photographer. She drags him places to get him out of the house when the weather is nice and she tries to push him out of his comfort zone a little. And if she can get some artsy pics out of it, great, that's fun for her. 

But the park outing when I was with them was not in any way easy, it was no walk in the park :)

However the amazing pics she posted that night told a different story. 

So for awhile she had me fooled and I'm sure she still has most of her friends fooled. 

All this to say that it's okay to post the best of the best pics on Facebook. We all do it. I do it on Autism Daddy sometimes too!  I post these artsy pics of me & my kid at a cool location like most recently the Highline in NYC




and people comment "wow it looks like he's having a great time"

Well in reality, he had an ok time, but he almost grabbed a woman's butt, and didn't want to walk back cuz he was tired, and he was starving but wouldn't eat the snacks we brought... but the pics didn't tell you that story...

So we all do it!   It doesn't mean our typical friends have perfect lives. And we all know we sure as heck don't have perfect lives. 

And even within our own home fool ourselves. 

We have an Apple TV and sometimes we push photos to the Apple TV while music is playing. The king likes to bounce on the ball to the Beatles while watching photos of our vacations. And the pics that we put up are the highlights of our vacations. Out of thousand pictures that we took :-) we curated the best let's say 60 and put them in an online album called "summer 2011" and there they play while the Beatles rock out. And looking at those pics gives us fond memories of those vacations because the pics we picked our all smiley happy moments. 

But boy was the summer of 2011 rough. That was our summer of rage with multiple meltdowns per day, lots of aggressive behavior and very little sleep. But seeing the pictures give us fond memories of that summer. 

And once again I think that is ok. 

I think all this fooling of each other is totally okay but I think it's only okay if we all realize it's going on and are aware that it's all just smoke & mirrors a lot of the time.... 

When you post great pics of your autistic kids and then two weeks later plead with your friends for some help are they going to be there? or are they going to think what is she complaining about her kid looks great & they're having the time of their lives this summer

So I guess I'm saying that maybe we should all post some reality every once in a while. 

So for you typical parents maybe post a pic of your house in disarray and maybe video of your kid striking out at the ball game every once in a while so us special-needs parents feel a little better about ourselves. 

:)

And special-needs parents every once in a while post a bit of what your special needs reality is. Whether that's a pic of the bruise you got from your kid head butting you or a quick video of a meltdown in a store...just so your typical friends have a reminder once in a while that things in your life aren't as rosy  as you paint them on Facebook. This way maybe when you ask for help you'll get the help you need. 

And all parents, typical & special needs, every once in a while post a profile pic of yourself looking the way you normally look, ladies wearing yoga pants with a big pimple & without make up. 

And men in your ratty shorts and ripped tshirt. 





Now that's the reality I want to see. 

;)

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, June 22, 2015

Video of Kyle eating dinner on a Monday night

Below is a quick video of the King eating his dinner tonight at around 7:30pm.

After school Wifey took him to a local beach about 30 minutes from home. 

I got home about 6:50pm, before them, and just as I was pulling in she texted me saying "can you make marinara sauce and keep some pasta on the side for Kyle and I'll make it with butter & cheese when I get home. He's gonna be starving but he's gotta go right in the shower first cuz he's full of sand...

So I did what I was told. LOL

To be honest me cooking is a rare occurrence but what made this meal kinda special is that we had the timing down perfectly. 

They pulled in, my sauce was ready, I gave him a shower, Wifey threw the pasta in the water and then jumped in the shower herself. 

And then right after this video the 3 of us sat at the table and actually ate together for 23 minutes. If it wasn't for the king's breath holding it would've been an A+ dinner but I'd say it was definitely a solid B+ maybe even an A-

:)

Sunday, June 21, 2015

5 Ways To Be a Pretty Good Special Needs Dad & Husband









(originally written & published on June 21, 2015)

So I have a wife and a 12 year old son with severe, classic, nonverbal autism as well as somewhat severe epilepsy. 

And I'm in no way a perfect special needs dad & husband. I'm not even good. I'd say I'm pretty good. 

And I can always strive to be better. 

And no one, including our wives, are asking us to be perfect. I'm sure they'd settle for pretty good. 

So here's 5 things I've learned over the years that I think make me a pretty good special needs dad & husband. 


1) You don't need to reinvent yourself and become this super amazing special dad. That's not what your spouse or your kid is looking for. Just be a wee bit better than the father / husband  you were before the diagnosis.

If you were the kinda father / husband that went out 3x a week with the fellas, poker one night, golf on Saturday, football on Sunday, then that's the precedent your family dynamic has set. So when autism or epilepsy or whatever  enters your household don't think your family is looking for you to drop everything, just drop one of them, maybe two on stressful weeks.













2) Readjust your priorities. If you always pictured yourself as the type of dad who was gonna spend the weekends trapped in your garage working on home improvement projects all day, hopefully eventually with your son, you need to let that go. And you need to evaluate is this home improvement project really necessary or am I using this as an escape from my autism kid & my wife. 



Now home improvement is just an example. I am not and have never been a home improvement guy but maybe sometimes in the early days of our of our autism life I would use work as my escape and maybe work later and stay longer than necessary. 

But then I realized I was using it as an escape and that wasn't fair to my kid or my wife. 

So evaluate yourself and realize what your escape is and adjust accordingly. 



3) Have roles and jobs in your special needs household that are entirely yours.

I am and have always been the sleep guy. It's my job to put Kyle  to bed each night. We didn't decide on that or have a formal conversation about it but it just evolved over the years and became my role. 

I'm also the medicine guy. I stay on top of all of Kyle's meds & vitamins, putting them in his weekly dispenser, re-ordering them when they run out, picking them up at the pharmacy and for the most part I'm the one giving it to him each day. Lately that means getting up at 4:45am to give him one med that needs to be taken by itself and then getting up 45 minutes later to give him the rest. 

Those are 2 roles that are entirely mine. I've got a few more. Wifey's probably got 50, but being able to take a few entirely off her plate is definitely a help to her. Maybe I'll work to try and take a few more off her plate. 













4) Have alone time with your special needs kid as much as possible.  And during those alone times encourage your wife to go out and take a break as much as possible.  And look your killing 2 birds with one stone!

Your kid needs alone time with his dad. That's always valuable and important to both you and your kid. And your wife probably really needs a break. 

Sometimes for us, it's as simple as me volunteering to take Kyle to his special needs swimming & music without Wifey on a Saturday morning. This way she can sleep in and then go to a yoga class.  

And also encourage your wife to have hobbies, hobbies that are not special needs related. Researching autism treatments during her down time is not really down time. 


5) When you are with your family, just be there... be present. I have the hardest time with this. And for me having a smart phone and having social media and this autism daddy page is my kryptonite. Sometimes when I'm with my wife and kid I'm not really with them because I'm checking my phone for the score of the yankee game or trying to see who commented on my latest blog. And if I'm doing that then I'm with them but I'm not really there.  You know what I mean. So sometimes, and this is hard for me, I try to put the phone away for the whole day and just try to live in the moment with the people who are in my presence and not worry about what's going on in my smart phone. Now maybe a smart phone isn't your kryptonite but maybe something else is. Figure out what is consuming your thoughts when your with your family and work on putting it aside and just living in the moment. 

---------

That's it.  That's my five. Moms & dads let's hear what you'd add to the list. 

And Happy Father's Day to all the great dads out there and to all the single moms who play both roles!!

THE END

Now I'm putting the phone down and I'm going to have breakfast with my family while listening to "Breakfast with the Beatles"

:)

-------------------------- -------------------------- 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!!

Saturday, June 20, 2015

Autism Daddy Now Available For Speaking Engagements -- Check Out theVideo of My Speech!



Hey Autism Daddy fans!

Back in December of 2014 I was contacted by the great folks at Utah Valley University.  They wanted me to speak at their annual autism conference in April.

I had never done the public speaking thing, but they were offering me a free trip to Utah and when would I ever get the chance to go there!  

So I said yes and started working on a presentation.  I sent them my idea, "Things No One Ever Told Me After My Kid Was Diagnosed with Autism"

Originally I thought I'd be speaking in a small breakout session in front of 50 people or so, but they liked my idea so much they asked me to speak in front of the whole conference after lunch!  So then I thought I better get cracking!  So I worked on a speech and an accompanying PowerPoint. 

And then on April 3, 2015 yours truly went on stage in front of 500+ people and did my thing!!!

I was nervous, but it went really, really well!  And it was so AMAZING to get positive feedback in person as opposed to thru FB or blog comments or email.

So I want to do it again and again.  I want to do more public speaking engagements.  So if you're interested in having me speak at your autism event please email me at autismdaddy.fb@gmail.com

And here, without further ado, is the first 8 minutes of my 45 minute presentation in Utah...

And yes, you will see my face, but my Utah friends kept my anonymity.  They billed me and introduced me simply as "Autism Daddy"

:-)




Thanks as always for all your love & support!


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

  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!!

 _____________________________________




Friday, June 19, 2015

Turning Off the Autism When I Get to Work Isn't as Easy as It May Seem



Some days I wish I wasn't an involved autism dad.  Some days I wish I was one of those dads whose main role is to work and "bring home the bacon" and I could work long, crazy hours and leave all the autism and epilepsy work & worrying to Wifey. 

Aaaah...wouldn't that be sweet...

But I'm not one of those dads...  I don't bring home enough "bacon" and my hours aren't crazy enough to warrant being a dad like that...

And I don't think I could mentally be a dad like that... It's not in my DNA.

So during the week I'm an autism / epilepsy daddy for 16 hours a day and a loyal and hardworking employee for 8 hours a day....

I work in a company of about 300 employees. Many people at work know that my kid has autism. Some know that he also now has epilepsy. And a few know about the blog (but that number is growing). 

However, I don't think I'm defined by the fact that I'm a special needs dad at work. I'm just me. I've been quietly working there for 21 years. I put my head down, get my job done. I think to the outside world at work I come off as pretty calm, cool, and collected most of the time, maybe a bit aloof at times...with a few flashes of work stress here & there.

I don't think by my outward demeanor I show the stress that I'm dealing with in my home life on any given week.

However, I gotta admit that some days it's really hard to turn off the stress of special needs dad when I walk thru those doors at the office. 

In the past few weeks I've had a bunch of autism related activities to attend to before work. A rough IEP meeting one morning, blood work for Kyle on another morning, a tour of a potential new school for his majesty on another morning, all in the past 2 weeks. 

For all these events Wifey and I take separate cars so I can speed into work afterwards. 

And what usually happens after all of these is that wifey and I spend 15 minutes in the parking lot chatting about our next plan of attack.

Then on the drive to work sometimes I call her if something pops in my head and we chat some more. 

And on many mornings lately when I get to work my head is spinning and filled with the thoughts of school tours and I'm literally writing emails to schools in my mind. 

And then I need to switch that off and go right into a meeting that has nothing to do with any of that. 

It's not easy. I know all working parents have to do that. And I know some have it harder than I do. But I'm just admitting that it's really hard for me. 

If I want to be honest years ago it probably was even harder. 

Back in the pre-melatonin pre-potty training days, we'd get very little sleep in the AD household And Id arrive at work on less than five hours sleep (not in a row) and less than 40 minutes removed from changing a poopy pull up on a seven-year-old boy. 

Back then it was hard to switch that off when I got to work too... 

But those no sleep, poopy pull up days had a different feel to them. 

Anyway all this to say that it's not easy turning off special-needs dad when I get to the office each day. 

And I said this before and Wifey knows this (and reminds me of it sometimes ) :) there's many days where work is a respite for me. 

Eight hours of work + a 45 minute commute each way equals 9 1/2 hours of respite each day. 

And as stressful as work can be sometimes I know it's a lot easier then what Wifey has to deal with on an average day. 
On any average day lately, wifey is holding her breath waiting for a call from the school to pick up Kyle because of big seizure activity or because of extreme aggressive behavior. She's also been writing emails to school administrators and district chair people trying to find school placement for September.  And setting up appointments to visit schools. And trying to occupy the Kings afternoons as best she can. 

So I readily admit that her job is much harder than mine, living and breathing autism and epilepsy 24/7. 

So when she takes her respite, when she wants to go out, heck needs to go out, I never give her a hard time. 

But I'm getting off track. The main reason for this post was for me to confess how hard it is to turn it off. And while I said above that I get 9 1/2 hours of respite on an average work day that doesn't mean that my brain is special needs free for all 9 1/2 of those hours....

Let's calculate...

My brain on the commute to work is filled with autism and epilepsy thoughts so that takes up those 45 minutes. That doesn't mean that I'm not blasting music or listening to Howard Stern. That doesn't mean that I'm completely miserable for those 45 minutes.

I'd say that it takes a good 30 minutes after I get to work for my brain to completely settle into work mode.  (So maybe I shouldn't plan any important meetings for that first half hour) :-).

Somewhere in the middle of the day, around 2:30pm when I know the King is in the car with wifey on the way home from school my thoughts will drift to wondering what his day was like... holding my breath waiting for that text or call from wifey, waiting to hear a good report or a bad report. I'd say that last about 90 minutes until around 4pm when I finally bite the bullet and check in with her myself.  Now again that doesn't mean I'm not a productive employee for those 90 minutes, these thoughts are not completely taking over my brain, they're just sitting back there...in the back of my brain... Festering...

And then the 45 minute commute home while blasting music or listening to ESPN Radio, my brain will  get bogged down with thoughts wondering what the evening is going to bring...and what kind of mood I can expect Kyle, and therefore wifey to be in. 

So 9 1/2 hours becomes 6  hours of respite. 

Ahhh, still 6 hours of respite where my brain is free from autism/epilepsy thoughts. It's no wonder that i sometimes can't wait to get to work on Mondays. It's no wonder that Wifey is jealous that I get to go to work in Manhattan each day a have adult conversations about adult, non special needs things... 5 days a week!

But I guess my point to all of this is to say that as a full time working dad, it is not as easy as it looks.  It's not easy going from an IEP meeting at 9:30am to a fiscal budget meeting at 11:30am.  It's not easy getting a text from wifey saying "Kyle had a 2 seizure, 3 hit day at school" at 3:15pm to a creative brainstorming meeting at 3:30pm.

Would I want to trade places with wifey and be the at home parent?  No freaking way!  But being a full time working parent who's very involved in my special kids life isn't as easy as it seems or as I might make it appear to the outside world at times...

If only I could be one of those not involved dads... If only I didn't care so much.... Things would be so much easier...

Aaaah, wouldn't that be sweet...

:-)
---------------------

  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!!

 _____________________________________




Saturday, June 13, 2015

Why We're Stuck In On a Sat Afternoon -- "you're not allowed to have any fun at home" :)

It's so frustrating. It's Saturday at 2:41pm. The weather is gorgeous and we are stuck in the house with his majesty. 

Why, you ask?

Bad behavior?  Nope

Seizure activity?  Not that we saw...

For me to tell you the reason that we are home you need some backstory 

So this morning Kyle had his regular Saturday schedule. Special needs swim at 10:30 and music therapy at noon. 

During music therapy he had a pretty amazing moment. It's a 40 minute session. According to his therapists he had a great session for the first 35 minutes then got up and said "Ka ka" and headed towards the door. 

They came out and told us that and I said maybe he had to go "kaki"

(that's what we call poop)

And sure enough he had to poop. 

"Good job getting your point across buddy!"

After music therapy we went to a diner to eat and then after we were going to do something to take advantage of this beautiful weather (either visit our friends 75 minutes away or maybe go to a more local beach)

But towards the end of the meal Kyle looks exhausted and Wifey says "damn... The same thing happened last Saturday. After music he shows signs of needing a nap and we get stuck in all afternoon..."

Then the desert part of his kids meal came (chocolate ice cream) and he perked up again and seemed more awake. 

And Wifey then said "if only you could tell us what you want to do...Kyle listen to mom, do you want to go out now and do something fun outdoors or do you want to go home and take a nap"

And with that he put his head on my lap in the booth and tried to curl up. 

"well he answered your question" I said 

So we came home. 

As we're walking in the house Wifey sys
"Ok buddy, you look tired, take a nap right now and as soon as you wake up we'll go out and do something fun in this weather. 

We walk in the house and he immediately starts bouncing on his big green ball and wifey says "oh no you're not allowed to have any fun at home"

:)

But now an hour has gone by and he keeps threatening to nap but then he's up and bouncing  and watching tv and we are stuck in...

And guess who's asleep? Wifey!

:)

And the reason why we don't just force the issue and bring him out even if he's tired...

Well if he didn't have epilepsy on top of his autism we probably would. 

But with epilepsy the naps could be a sign that he had a teeny seizure that we didn't see...

and also some of the seizure meds can make him tired...

and then some epileptic people are prone to have more seizures when they are overtired and "denied" sleep...

So that's a vicious trifecta. 

So we are trapped in our house on a gorgeous Saturday afternoon...

Ugh. 

But there was two nice positives with the "kaka" and telling us what he wanted to do at the diner. 

So on this day I won't say that autism sucks I'll instead say that epilepsy sucks!!


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