Saturday, December 31, 2011

"But He Was So Good When You Were Here Last Time..."





(originally written & published on December 31, 2011)



"But Kyle was so good  the last time you were here"
"But he's so good in restaurants"

This is what we always here when we decline an invite to a family member or non-asd friend's house or to a party that they are throwing at a restaurant / catering hall.

Now we aren't normally ones to keep Kyle in and shelter him from the world.  We like to bring him almost everywhere.  I wrote all about this in a recent blog post that you can read here.

Sometimes we bring him to places and we know he will have a good time like his normal weekend routine (special needs music, swim, gymnastics).

Sometimes we bring him to places and we are pretty sure that he won't have a good time like a NY Yankee game.  Sometimes we do this to test his threshold and sometimes we do this because we are being selfish and we really want to go to a Yankee game...or... we want to feel like typical parents for one night bringing our son to the ball game.

Sometimes we bring him to places and it's a roll of the dice.  We're not sure if he'll love it or hate it or be indifferent... like going to the movies or going out to eat or going to see The Lion King on Broadway.

But when we decline an invitation to an event, a Baptism party at a restaurant or birthday party at a family members house it's usually because my wife & I are exhausted and just have a gut feeling (probably from prior experience) that Kyle won't have a good time and the wife and I will be running around playing goalie trying to keep him out of the boiler room or the kitchen or the ladies bathroom.

But whenever we politely decline we always hear "Why?  But he was so good the last time you were here."  Or my favorite "but he's so good in restaurants"

Somehow what they are not seeing, somehow are blind to is that we've brought a HUGE bag of toys/books, Ipad & a bag of snacks and that the wife and I are playing "goalie" the whole meal.   We've got the routine down pat.  All silverware, plates and condiments are removed from Kyle's immediate seating area within seconds of us sitting down.  
 
Yeah he was good, but there's cheerios and popcorn all over the floor of a Chinese restaurant and I'm completely stressed out and taking home my entire meal in a doggie bag....  

When we do go to a restaurant or somebody's house for dinner the wife and I actually discuss our game plan in the car on the drive over.  

ME  "Ok you eat first and I'll take the first shift with Kyle..."
WIFE  "Well she's making ham and he liked ham that one time.  Maybe he'll sit and eat for a little while....
ME (in a British accent) "Not bloody likely..."

So on occasion we will decline and will usually get a guilt trip from one of our mother's about it.  "Everyone wants to see him.  Just stay for a little while..."

But sometimes we will say back well "instead of having ___'s birthday cake at your house where Kyle runs around like a maniac, how about we host it at our house, bring everything & everybody here."  

Like most ASD kids he's alot more comfortable and safe in his own environment.  But rarely do people take us up on that.  It just blows their minds...

Same thing goes for restaurants.  Kyle has a few restaurants where he has always had good experiences...and some where he's always had bad experiences.  So when the family is planning a dinner out for so & so's birthday (not like a formal party, but a big family dinner) and they say they're having it at one of the "bad experience" restaurants we will politely say "can we make it at ___ restaurant instead and can we make it at 3pm instead of 4 cuz it'll be better for Kyle."  But again they rarely change it... "but I told everyone that it'll be at ___"  So what?  Call them back

Ok, so we get it.  People, especially older people (like our parents) are set in their ways and you can't change the plans on them within 72 hours of the event :-) so we then weigh our options.  Sometimes we roll the dice and go... and other times we decline.

Tomorrow night my uncle is having a New Years Eve party at his house.  It's mostly in the basement which is very bright, very crowded, and very loud.  The wife and Kyle declined.  I said I would show up for an hour or two just to see my side of the family.  

And all night I will hear... "Where's Kyle?  Why didn't you bring him?  He was so good the last time you were here...."  Oh the guilt!  NOT!!  

There you go... a nice long rambling blog post about nothing for all my new Autism Daddy fans.  Hope this doesn't scare you all away...  :-)

THE END

PS I just want to add that we have a very supportive family on both sides... They are totally around and get Kyle.... And they truly mean well... They really want to see him and have us be included in all these events/ parties... They just maybe sometimes cant understand when we sometimes (maybe 20% of the time) say no...


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If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the link 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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Wednesday, December 28, 2011

My Experiences w/ Antidepressants: Special Needs Parents Sometimes Need Help & That's OK







(originally written and published on December 28, 2011)





As parents of kids with autism it's easy for us to get stressed & depressed and it's often hard to put yourself first and admit you need help and to seek that help out.  It was definitely hard for me, but a few years back I made a move that changed my life for the better...  This is my story...   :-)

It was December 28, 2009 that I had enough and worked up the nerve to call my doctor and admit that I needed an antidepressant .   My main symptom?  I was tired all the time...

I didn't think I was depressed, but I was TIRED ALL  THE TIME. I was always negotiating with the wife for naps...

I would go to my yearly checkups the previous few years saying why am I always tired and the dr would say, there's nothing physically wrong with you. You are healthy.  But he would always say "how are you guys doing? I know you are dealing with alot with Kyle's autism & all. Let me know if you ever want to try anything.". And I'd always say "I'm fine... just always tired..."

But thinking back I was more than just tired.   I was in a funk quite often.  I would come home from work most days in a good mood and would say to myself, no matter what happens stay in this good mood. Then I open the door, see the wife yelling at Kyle and/or cleaning up a mess he made and I'd be right back in my funk.

So during the Christmas week of 2009 after begging my wife for an afternoon nap I started researching antidepressants.  I went on websites like crazymeds.com and askapatient.com and found out that almost all antidepressants have sleepiness / drowsiness as a side effect and lack of sex drive.   I was tired enough already. I couldn't have lethargy and decreased libido on top of it.











The only antidepressant  that didn't was bupropion, brand name Wellbutrin.  It was the only one that had energy and increased libido as a "side effect.". That sounded great to me!  On these patient review sites people also claimed it made them more organized and helped them concentrate better. Of course if you read enough, there was plenty of negative reviews / comments, but less than many of the other antidepressants I researched....

I never had any fear or shame about taking antidepressants. The hardest part for me was making the call to my doctor. My general practitioner is the coolest. I called him on 12/28/09 and told him exactly what I wanted to try and with no hesitation he...


Monday, December 26, 2011

Eliminating The R Word???

As y'all probably know by now I'm not normally always politically correct but this is one PC thing I'm in favor of.... eliminating the use of the words "retard" and "retarded" as slang or derogatory terms....

There's a whole movement and campaign about this and you can sign a pledge that you will "Spread The Word To End The Word" at http://www.r-word.org/

What are your thoughts on this?

This hits close to home for the wife and me because while many people don't put autism & mental retardation together, when you've got a severely autistic kid who's 8 years old and his expressive & receptive language has been consistently at the 15-18 month level for years, guess what... he also could be considered retarded...

So when the wife and I hear that term, especially from people we know, it jolts us a bit, like a slap in the face.... but you'd be surprised how many people use it often with out even realizing it or meaning to.

No I'm not referring to some jerk who's actually calling a disabled person, a retard.  Of course that's offensive... But what irks me is when people see something silly or bizarre and say "That's so retarded" "You're so retarded"... that kind of stuff....

I've even slipped up once in a while...and more recently almost slipped up and found myself starting to say the words "THAT'S SO...." and would redirect my brain mid-sentence to RIDICULOUS instead of retarded....

Again, I know this all sounds very PC.   And this may sound bizarre but it doesn't always bother me when I hear it used inappropriately in a movie or even in a broad comedy...but when I hear it used on the street or at work or at the family dinner table it makes my skin crawl....

Don't they know that Kyle (their nephew, cousin, grandson, friend) is also retarded???

Am I too politically correct on this one?  I'd love to hear your thoughts & opinions....




facebook comments 12/26/11

Saturday, December 24, 2011

12 Ways To Keep Your Marriage Strong When You Have A Child With Autism










(originally written & published on December 24, 2011)





I always hear how the divorce rate in Autism Households is supposed to me astronomical (which really isn't true, click here).  And then I read from many stories on my Autism Daddy Facebook Page about how their husbands (and yes a few wives) couldn't handle the stress of living with autism and bailed out.  

And whenever I hear that the first thing I think of is what cowards those people who bailed out are...especially the men.  The MANLY thing to do is to stay.  The masculine thing to do is to fight for your marriage and your family.  

So I sat down and thought about what keeps my marriage strong and sane and thought, "let me write a blog post about it".  

Before I get into the list, you should know where I'm coming from.  I've got an 8 year old with severe non-verbal autism.  He is our only child.  


Without further ado, in no particular order, here are my 12 Ways To Keep Your Marriage Strong and sane When Autism Hits....


1) Have an "us against the world mentality"
You are your spouse are both in this TOGETHER. The rest of your life is probably gonna be a roller coaster of ups and downs...but guess what?  A roller coaster is ALOT more fun when you're sitting next to your best friend. And when you come up against battles along the way with doctors, school districts, family members, lawyers, etc it's so much easier to have a teammate, a partner by your side. Also, you don't always have to agree with each other on every course of action when it comes to your asd kid, but in public it helps to have a strong united front.



2) Have date nights out of the house as often as humanly possible....aka it's ok to be selfish
I can't stress this enough to all parents but especially to asd parents. Before you had kids you were a fun vivacious couple right?  Why does that need to change?  Ok when you are down in the trenches cleaning poop off the wall you don't feel vivacious, but the wife and I try to get out together without our kid at least twice a month...sometimes it's just dinner & a movie, other times we will meet friends out for drinks or go see a concert... Whatever works for you...  I wrote in another blog post how important being selfish is.  You can read that here.

And sometimes if you can't afford a sitter you need to be ultra selfish and guilt your family into baby sitting by any means necessary.  There's some months where we considered getting out for a date night an emergency situation and we tell the family accordingly. I wrote a bit about that in a previous blog post here...



3) Make room for SEX

Yes the autism is going to affect your love life BIG TIME.  But there's GOTTA be room for it once in while right?  It may not always be the most romantic kind. We often have alot of wheeling and dealing and negotiating going on but it's worth it.  And if you can swing it for us there's sometimes nothing better than every couple of months using a sick day from work when you're not actually sick...and your kid is in school...if you know what I mean...   :-)



4) Get a better sense of humor...  Quickly...

Life's gonna really suck sometimes. Your kid is gonna do the CRAZIEST things!!!  But if you can just twist it on its head sometimes and look at things and seemhowmbizareelu comical they are it can really help.  I mean my kid is licking the window!!  That's freaking bizarre and funny!  




"Does it taste good?"  The wife and I have a warped un-PC sense of humor. We curse like sailors and say to anyone who will listen that we will be THRILLED if Kyles first words are "What is wrong with you motherf--kers??"  I really feel that our warped sense of humor helpsnusnget thru some of the dark times quicker than most...




5) Feel better by any means necessary...aka... Antidepressants are not a dirty word...

Really, no explanation necessary.... 2 years ago I finally bit the bullet and realized that I was kinda depressed and asked for help.  And the help came in a litte pill called...
Wellbutrin. For me, it did exactly what I needed it to do. It gave me more energy, more patience, and let me roll with the punches better.  I am still me, but a calmer, less intense, slightly more organized me.  My wife went on it about 6 months later and it has helped us both IMMENSELY. I wrote a separate blog post all about this that goes into alot more details about my experiences on Wellbutrin. You can read that one HERE :-)















6) Have solo activities that recharge your batteries...

If you can't get out as a couple as much as you'd like with the help of sitters, then at least make sure that you each have individual NON-AUTISM activities that you can do alone or with friends that will recharge your batteries.  I like to run and belong to a running group and once or twice a year I'll sneak away with some friends for an overnight running adventure (marathon or relay) in another city.  I'm also on my company bowling team.  My wife has several different groups of mommy friends and they are often going out for dinner, drinks, dancing, etc.  Encourage your spouse and give her the opportunity to take a break away from autism...and a break away from you as much as possible.  


7) Readjust your priorities.  

Many men feel like being the provider Mon-Fri is JOB #1 and then spending the weekend doing manly weekend work (yard work, repairs, etc) is JOB #2 and are therefore not present for alot of their kids lives/ activities.  Maybe an adjustment is in order. Maybe skipping the yard work one Saturday and going with the family to special needs gymnastics is more important and would be more helpful to your spouse.   

For moms who are type a personalities  vacuuming and ironing every day isn't as important as spending more time with your family. Also for you moms that need to have everything a certain way... You may be pushing your spouse away.. So what if your hubby puts your kid in mismatched socks or in wrinkled jeans?  At least he's involved and helping getting the kid dressed...

Just two small examples of readjusting your priorities but there are tons of others...


8). Live in the moment
. Try not to look too far behind or too far ahead.

Easier said than done but oh so important.  Try to live each day as it happens. Try hard not to compare it to what happened yesterday or what may happen down the road.  ASD kids make progress, ASD kids regress.  What your kid did yesterday he might not do today and vice versa.  Also looking too far ahead can get you in a funk. Will your kid be self sufficient as an adult?  Will he need constant care?  Looking too far ahead can destroy you and your marriage.  Yes, you need to plan for it financially and mentally, but dwelling on it is deadly...














9) Get rid of the "what ifs", the "blame game", and the "grass is always greener" syndrome as soon as possible...



I still have problems with this one...  Not the blame game so much.  There's no one to blame for my kid's autism....especially not my spouse...   But I often get bogged down in the what if's (what if I had a typical kid? would he love watching baseball with me?) and I still have a problem with the grass is always greener syndrome which I wrote about here....


10) Yell, scream, have fights with your spouse

Get it all out right then and there when you are mad about something.  It is much healthier than letting it stew and then giving them the silent treatment.


11) Get your asd kid and yourselves as much sleep as possible.

Your kid not getting enough sleep and being up all night is tortuous for,all involved. This may be controversial but I would say to do whatever you can, as early as you can to get your kid on a normal sleep schedule and when it's age appropriate explore the supplement melatonin (a complete life saver for us that I wrote about here) and if necessary stronger sleep aids.  Sleep is important for your kids and it's important for your sanity and for your marriage...

12) Get off the Internet and sit on the couch and watch TV with your spouse...

You successfully got your kid to sleep.  Now get off the Internet.  Stop researching that latest GFCF recipe.  Stop googling all things autism.  Stop trolling Facebook.  Stop reading Autism Daddy.  Turn off the computer and veg out on the couch and watch tv with your spouse....  Or better yet get, go,to bed... And get some sleep...or even better yet have some sex...  :-)


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!!




Wednesday, December 21, 2011

"Public Display Of Autism" -- a Poem by Tina Moreland



Somebody posted this poem on my Facebok wall and I kinda liked it. And I thought you all might to...

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Public Display of Autism
A Poem by Tina Moreland


If he falls to the floor, kicking and screaming, because there’s no chicken nuggets, it’s just his way of coping. Be patient, you’ll get your turn to order.

If she bumps her head and starts to hit herself in the face, don’t stare, it’s her frustration. Mom will handle it, she see’s it everyday.

If dad is cutting his child’s food, he’s not treating him like baby. He just doesn’t want his son to choke.

If she ignores your child on the playground, she’s not a brat. She’s just not good at social interaction. She would love to play with your child, she just doesn’t know how.

He may be to big to sit in the shopping cart, no, he’s not lazy. He wants to run around, but his mom needs to shop. She’s not up for chasing him today.

If she has to be carried out screaming, it’s probably because of a meltdown. Be helpful, open the door. Don’t just stare or whisper. No, it’s not because she didn’t get the toy she wanted. If it were only that simple.

Don’t talk to her like a child, unless she is one. Don’t yell, she’s not deaf. She may not talk, but she can understand.

No, it’s not bad parenting. Discipline won’t help.

This is autism, it’s his life. Don’t judge him, he’s not judging you.

Tuesday, December 20, 2011

Singing Christmas Alvin doll = cruel & unusual punishment for dad & mom :-)

video
Special sarcastic thanks to my mom for getting this singing Alvin doll for Kyle for Christmas.  This song is cute... for the first 80 times you hear it.  Here's hoping that the king drains the batteries by Christmas.  ;-)





alvin and the chipmunks movie plush toy

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