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" :-)


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 Kyle 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

Kyle was still Kyle. 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 & Kyle 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



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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!!

 _____________________________________




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 Tips To Be a Pretty Good Special Needs Dad & Husband



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. 

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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"

:)

Saturday, June 20, 2015

Autism Daddy Now Available For Speaking Engagements -- Check Out the Video 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!!

 _____________________________________




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