Monday, January 21, 2013

I Am Not An Autism Dad Role Model...











This is Paul Rudd, not me... :) One of my fav movies by the way...


(originally written & published on January 21, 2013) 


A few days ago I wrote a post called "Not Much Teaching Going On At Home And We Are All Happier" (read) where I talked about how little instruction the wife and I do at home with our severe asd son.  And how I don't think there's a little Carly Fleischmann locked inside my son.  In the post I mentioned that we do stress life skills when we can, but the concepts of the alphabet ("point to the letter G"), colors, numbers, etc, we've given up trying to teach him that at home... and we are all much happier because of it.


I got all the usual comments.  Some people thanking me as always "for telling it like it is"... some people telling me not "to give up" so easily...some people telling me to try Son Rise or Playtime or ABA... some people telling me to change his diet.
And I am fine with all of that.  I don't always agree with all your comments and I'm not always posting asking for your advice :-) lol...but I accept them all.

Most of your comments I love and they inspire me and make me want to keep doing what I'm doing.  Sometimes your comments make me think ("things that make you go hmmm").  Sometimes your comments bother me or annoy me or make me feel even sadder or more depressed... but I'm a big boy and I can take it.  I chalk it all up to I'm putting myself out there to the autism community and your feedback, good or bad is what comes with the territory.

But I got one comment that really stuck with me.  It didn't bother me or annoy me, but it stuck with me and I feel like I still need to talk about it.

Here's part of the note...


hi - was thinking more about your post. totally get it, because I'm there. its so hard to just find the time. But I also have another part of me that says "suck it up, buttercup" because my 8yo non-verbal is just starting to verbalize now after excruciating effort and NO social life. if I'd have given up, or taken the "oh well he needs a break" approach (and believe me I would have LOVED to take a break) he wouldn't have got there.


I wouldn't tell 14000+ people you don't think your son is any Carly Fleischman, because what if he is? she didn't even start typing until 16. whether you're ready for it or not, meant to or not, want to or not - you influence a LOT of people now. ...


 I do think you have an incredible opportunity to help, too. don't waste that. you are a good man, I can tell. you have a good wife. you have a good life. there are people fighting wars in bad places who have to leave their autie at home with only one parent or no parent. there are people who cant afford help, don't have an education / have other problems. don't worry about what you achieve, but instead of letting him zone on the tube... hold him. ...
you're a Dad. lead the way. every minute is an opportunity, and I know the way this world is set up doesn't make it easy for us autie parents to do everything so you need to prioritize. nothing less than the future depends on it. 


Now there's nothing in there that I haven't heard before... except the fact that I shouldn't write something that's on my mind because I have 14,000 followers and I influence a lot of people.  That's new to me.  But I've got to state this loud and clear.


I AM NOT A ROLE MODEL.  I AM NOT A HERO.  I AM NOT AN "AUTISM WARRIOR".









I didn't start my FB page and blog to be some autism parent role model or some autism parent superhero.  I started this all because I needed a place to vent... a place to write down my thoughts, frustrations, our challenges...and once in a while our little victories.  A long time ago I wrote this on the "About Me" section of the page and blog...



This page will be 75% comically ranting & complaining & telling it like it is and 25% inspirational & warm & cuddly & feel good stories...Ok, maybe more like 80 / 20... :-) All people are welcome on this page regardless of their backgrounds or beliefs. And you are welcome here if your kid is low functioning, high functioning, aspergers, etc. But always remember the place where I am coming from. Severe, low functioning, non-verbal autism. Just remember this. I have a 9 year old son whose receptive & expressive language are at an 18 month old level and they have been for years. So that's the autism that I am writing about.


The mission of my page has become to talk about and try to laugh about all the unpleasantries of this crazy world of autism. I couldn't really find a FB Page or blog that wasn't all sunshine and rainbows. I couldn't find a place where people actually bitched and complained about autism.
So, this is a place to tell it like it is, not to sugar coat things... We talk about poop on here ALOT, and complain about our kids crazy stims and bizarre sleep schedules. If you don't like people laughing about poop and shouting hallelujah when their kids FINALLY fall asleep, then this might not be the page for you.


Also, please remember that this is my page and on it I'm sharing my story of my life with my wife and my only child, a boy named Kyle with severe autism. Sometimes you may not agree with everything I write about, and that's ok, but just remember that I'm posting as a 42 year old dad, not some sort of autism expert.



And I stick by that.  You may not agree with everything I post and you can tell me I'm wrong about whatever.  I can take it.

But please know that I will not let the fact that I have 14,000 followers affect what I write about.  I enjoy writing what's on my mind...or showing you what's going on in my home... and my FAVORITE comments are when I get the feedback that says things like "it's so good to hear somebody saying what I feel."  That fuels me...










And as for the fact that there's other autism parents out there that have it harder than me and that I should just "suck it up" again I'll say this...


Again this is what's going on in my brain... and I can't help the way my brain works...

But I will say that the same way that you can say when you've met one kid with autism then you've met one kid with autism... you can say the same thing about autism parents...
I wrote this a while back in another blog post (read), but it fits in here nicely...



I said in another post (read) that I don't buy into that "God only gives you what you can handle crap" but maybe I buy into it a little because we readily admit that we couldn't handle any more.  I've written before (read) that we decided to not have more kids after Kyle because we were fearful for more asd kids and were afraid that we couldn't handle it.  So yes, many of you have multiple kids and some have multiple asd kids and you hear old Autism Daddy bitching and complaining and you're thinking WTF?, what's he complaining about?  I've got it 5 times harder... To you folks I tip my cap and say, you win... you're obviously stronger than me... having one kid like Kyle is about all I can handle...so I'm weak and you're strong... I've only got 1 kid with asd and I'm on antidepressants...






So there you go.  I am not an autism role model.  I am not an autism super hero.  I am not an autism warrior dad.  With only one asd kid I have all that I can handle right now... and the wife and I are doing what we think is right for our son and for our survival.  You may not agree with it.  You may not think we are doing enough... but this is my journey and y'all are reading what's going on in my brain.  And I won't change that.  

If you're looking for a role model or an inspirational autism page/blog you may be in the wrong place.  

Now, if amazing, inspirational things happen with my son of course I will write about them.  And if shitty things happen I will also write about them.  

On this page/blog I will vent when my kid wets the bed.  I will tell you about his seizures and how freaked out it makes us.  I will get excited when we get a sitter and get a few hours of respite.  And I will celebrate the little things like when my kid eats a pb&j sandwich for the first time in 2 years.  

That's about as inspirational as things are gonna get around here for now...hope you're all ok with that.

THAT'S ALL I GOT...

THE END...

PS.  Please don't attack the person that sent me this note.  She said nothing wrong and I hold no ill will towards her.  I just read her note, and she made me think.  Her note was one of those things that made me go hmmm...
 


-- 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!!




My Wife Would've Been a Great Typical Parent - Me, I'm Not So Sure









(originally written & published on January 21, 2013)

Yesterday we had some family over including two of our young nieces. They are  7 & 8 years old. And the whole time they were over the wife kept asking, "Hey girls, wanna do some coloring?  I've got a bucket of crayons, paper & markers..."

After a couple of hours of her asking they finally appeased her and said yes.

The wife grabbed the kiddie table & chairs from the kings playroom and set them up in a corner of the dining room.

And the wife and our nieces spent the next hour engrossed in coloring. The little girls were into it and the wife was too. And I heard her throw a few autism praises around like "Good job!"

Anyway watching the wife thrilled to be coloring made me realize how great a typical mom my wife would have been.

She has always been the "cool aunt" to all our nieces & nephews always wanting to play a game or color, always up on pop culture, and just generally a cool chick.

And she would have been an even cooler typical mom if she was given the chance.

I mean right now, as you all know, she is an amazing mom!  But she is an amazing autism mom.

I've recounted how my wife is an Autism Mommy Rock Star many times, but if you want a good picture of her awesomeness  I implore you to please read this old blog post HERE.









And maybe in some homes there's not much of a difference between an autism mom and a typical mom, but in our house there is. In our house it's kinda like we're stuck in the movie "Groundhog Day". We've been raising a 2 year old for 7 years now. And that needs a different kind of mom.


She's still the coolest autism mom I know. She has learned how to roll with the punches better than any other severe autism mom that I know. And she tries to make things fun for the king. She's always singing him songs and is trying to get him to dance and is always full of energy.

But unfortunately many of the things that make her a cool aunt and would have made her a cool typical mom don't factor into her job as an autism mom.

And that makes me sad. And at times I know it makes her sad. She always wanted a big family. At least 3 kids. And she would have taught them a love of 80s music & movies & pop culture. And they would've been the coolest weirdest typical kids on the block.

But instead we've got the sharpest dressed coolest most severe kid on the block with the coolest parents that somehow ON THE SURFACE seem to deal with it all exceptionally well.


So, do I think I wouldve been an awesome typical dad, you ask?










Sometimes even after  7 years of living this autism life I see my son and I get a sharp pang of "I wonder what kind of father I would've been with a typical son?"  And sometimes my brain even goes to "Wow I would've been a much better dad if I had a typical son because I could do ___, ___, and ___ with him and I could teach him about ____, ___, and ____."

But you know what?  I'm not sure I would've been as good a dad with a typical kid.  Here's a bunch of reasons why...

-- I'm not athletic in any way shape or form, so besides running there's no sports I could teach him.

-- I'm not a handyman, so I could impart none of that wisdom on my son

-- In my old life before the diagnosis I was on a career path where I was traveling quite a bit, and probably would have continued along that path and I wouldn't be around as much.  After the diagnosis I headed in a different direction that requires no travel.  I may be stuck and haven't had a promotion or a raise in 5(!) years, but at least I get home at 6:30pm each night.

-- But here's the most important one...before the autism diagnosis I never would have considered going on antidepressants. I know, your thinking "you probably wouldn't have needed antidepressants if your son didn't have autism" but you know what? I probably could have used them for years! I think about the stupid, silly things that I used to get stressed about before my son was born. What a jerk I was.
(I wrote about how antidepressants have helped me HERE)


So I'm not sure what kind of typical dad I would have been...but I know my wife would have been an awesome typical mom.

But we weren't dealt the typical cards...so we're doing the best we can with the hand we were dealt.  And on most days I'm proud of the autism parents we've become.

One thing I do know, I'm pretty sure our marriage is stronger because we have an autistic kid.  In our world the expression "what doesn't kill you makes you stronger" really holds true...cuz with all we've been thru the fact that we are still together says volumes.

That's about all I've got to say.

Now I'm not gonna leave you with one of those "because of all this I wouldn't trade his autism if I could"  You might not like this, but even with everything I just wrote, I would return his autism to the store right away if I could.  I don't even need my money back or store credit.  They can keep it.

If Kyle was typical I'd love to see how our lives would've turned out.  Would we have 3 kids?  Would we be happy?

But again... we weren't dealt the typical cards...so we're doing the best we can with the hand we were dealt.  And loving our crazy king with all our hearts and revolving our lives around him.

And for you newbie autism parents, you may not like to hear this...but after 7 years of living this autism life these "what if" thoughts still pop in my head almost on a daily basis.  The difference is, in the beginning, it would stay in my head and ruin my day.  Now I see a typical father & son and it pops in my head for a fleeting moment of "I wonder..." and then it goes away cuz I'm busy passing handfulls of cheerios to the king in the backseat...

:-)

THE END



-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!




Friday, January 18, 2013

Not Much Teaching Going On At Home... and we are all happier...





(originally written & published on January 18, 2013)





I was just thinking about how little teaching / instruction goes on in our house.  I've written many times before about the king, and how he hasn't made any significant cognitive / educational progress in years.  I always say that he has the expressive & receptive language of an 18 month old.  And he's been stuck there for YEARS.

Now he's made some behavioral progress... and I've recounted some simple things that I consider progress that you can read HERE.

But speech, or knowing his letters or numbers, or refining his point, or picking up PECS or sign language... very little progress over the years.  The school tries their best... and I think they're doing a pretty darn good job... but not much progress... So when they say he had a "good day at school" what that means is behaviorally he was happy/pleasant, he ate all his lunch, and maybe he sat for all of the circle time.

And I've written before that when Kyle perceives that you are asking him to work ("point to eyes"  "where's the letter d"), he gets stressed out and breathes heavy, and will try to get out of the situation...especially when it's mom or dad asking him.  

And with all the medical stuff (seizures, weight loss, holding breath) & behavioral stuff (aggression, hyperactivity) we've been dealing with over the past year we've really stopped trying to get more out of him.  

And I think we are happier and he is happier.  

What we do instead is fill his out of school time with as much fun structured activity as possible.  And with all that activity it truly feels like there's not much more time in his day for "instruction" from mom & dad.

He gets out of school at 2:10pm.  On Tues after school wifey takes him to an OT swim lesson.  On Thur after school he has a special needs sports class. 

On Mon & Wed, thanks to his Medicaid waiver he sometimes has a sort of "play therapy" in the afternoons with one of his aides from the school.  On Fri, maybe wifey will take Kyle food shopping.

With all the driving back & forth from all of these get they usually get home at around 5pm.  Then he maybe has 30-60 minutes to unwind, watch some tv, before it's 6pm and dinner time.  I get home around 6:30pm-ish and they are usually just finishing up dinner.  And lately by 8pm he's ready to go upstairs to bed.  So that leaves 6:30pm-8pm as the time that I could be trying to "work" with him.

But I will readily admit that I'm tired from working all day.  And he's tired from a full day at school.  And so 6:30-8pm is more tv watching for the king.

The weekends, we have lots of outside activities that I write about often.  Music therapy & swim on Saturday.  And gymnastics & swim on Sunday.  And we get home from those around 2pm.  And yes, from 2pm on we have plenty of time to try to have structured play time with our kid.  But we don't.  We do laundry, have lunch, watch tv, etc.  Sometimes we will have family over... but not much structure or learning going on.

My wife has always been fine with this routine...but I would very often feel shitty about Kyle's lack of progress and would feel guilty about not doing more to "teach" him.

But when I would try to work with him it was SO FREAKING HARD... and would make me angry & depressed & more guily.

I wrote this in a previous blog post 

... if your kid shows a glimmer of interest in learning it makes it SO much easier to "work" with him on your own.
When you get something back from your kid when you use a particular teaching method (ABA, Pecs, etc), even if it's just a glimmer of something, an iota of something it makes you want to work with him on your own outside of the "school day".
We haven't seen that from Kyle in a LONG time. He doesn't enjoy learning anymore. With mom & dad he gets stressed when you ask him the simplest question like "point to nose"

And that still is true.  So we've kinda given up.  And we are all much happier for it.

Now that's not to say that we don't push him.  We got him potty trained.  We still try to push him to dress himself.  And to use a fork properly.  This stuff is a struggle too.  But this is stuff we will push him more on.

I guess you could say we push him on "life skills" at home but we are thru pushing him on academic / educational stuff.  If he doesn't know "point to the letter A" by now maybe he never will.  And if he knows it, but his point is off, then we will try to work on his point (another life skill?).

But if he knew the letter A but his point was off wouldn't that frustrate the shit out of him?  If he could read or type but couldn't because of some fine motor issue, wouldn't he melt down because of it?  But he doesn't.  So I don't think he is a Carly Fleischmann.  He is not frustrated with what he can't do.  He is just happy being who he is.  And enjoying his toddler shows & toys.

When Kyle is in a good place behaviorally things can feel kinda normal in our house.  Not like raising a typical 9 year old...but maybe like raising a typical 2 year old.

So for now we are going to continue doing what we are doing and not feeling guilty about it.  Letting the school do their thing as best they can, sending him to lots of activities after school, and on the weekends, and home time with mom & dad is down time...a time to chill & flap & watch tv & jump on his ball...and mom & dad will be there to feed him, tickle him, love him up, wipe his butt (another life skill we need to work on), and prevent him from climbing on the staircase above the sofa...

This post is all over the place.  But I guess I'm gonna end it here.

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




----------------
  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!!



011515


Friday, January 11, 2013

The Mystery of the Friday Morning Seizures...

What the F is it about Fridays? The king had another seizure this morning. The last 3 Fridays he's had seizures.

It's the only day of the week that he's had them since they returned 3 weeks ago... The rest of the week he's been fine. This week he's been especially amazing behaviorally and seizureally.

seizureally new word, ™ ® ©  by AD 2013 :-)


WTF?!

And I know our autism parent instinct is to look for the "pattern" but there's no pattern that I can think of.

The first Friday was during the holidays so there was no school that week. The second Friday came during a short 3 day school week after New Years. And this mornings were at the end of a full 5 day school week.

Again WTF?!

I honestly was expecting one this morning and almost "on cue" he had one... So freaking bizzarre & unreal.

But I guess the wife & I truly are getting used to these seizures or our Wellbutrin is REALLY working cuz we sent him off to school and off to a class community trip (supermarket & restaurant) without even blinking an eye...

You gotta live your life or the terrorists win, right...
:-)

Any experienced seizure / epilepsy parents have an answer for "The Mystery of the Friday Morning Seizures"?

Tuesday, January 8, 2013

A Recap of a Boring Tues on Autism Ave. Here's to 1000 More!

Tues 7:36pm -- pretty uneventful week on Autism Avenue so far.

Seizure free for the king so far...at least as far as we can tell... so maybe the new med (Onfi) is helping... although he wet the bed this morning and slept soundly thru it so maybe he has seizures during the night?

The king's had 2 pretty good school days behaviorally from the reports from his 1:1 aide.

He did great swimming & following directions at his swim/OT session this afternoon.



Then Mom & Kyle picked me up from the train this evening and I got a HUGE grin thru the car window when he first saw me...

Right now wifey is upstairs in our bedroom watching tv and taking what we like to call "a mental health break"

And the king & I are sitting in the living room (well I'm sitting and he's bouncing, meandering, lying, wandering) watching the Sesame Street Sleepytime Songs & Stories DVD...

I'm about to give him all his meds + Senokot & Melatonin...

It still blows my mind how well the king takes his pills... I put them on a spoon with baby food bananas and he wolfs them down....no matter the size!


 Sometimes we put 2-3 on a spoon at once! The day I discovered that was one of my proudest moments as an Autism Dad. LOL

If all goes according to plan, he'll be asleep by 8:30ish and then the wife & I will have a late dinner in front of the tube...and before you know it she'll be asleep on me on the couch and I'll be very quietly watching Dexter and other shows she hates...as she sleeps...over her sleeping body ...LOL

A nice boring uneventful day on Autism Avenue... Here's to 1000 more!

:-)

Friday, January 4, 2013

More Seizures For The King Today...But Watch This Cute Doggy Video!

Friday 10:02pm -- The king had a few seizures this morning....he went to school about an hour late, had a GREAT day in school, had a GREAT, pleasant, happy, seizure free afternoon & evening at home...and now he's having some seizures in his sleep...freaky, freaky stuff...

The neurologist is going to add a new antiseizure med into the mix to go along with the depakote. I'm not sure what it is yet. We'll get more info tomorrow.

The drs said these "breakthrough" seizures may coincide with a cold/ infection/ fever. Kyle has had a very minor cold this week...but it's not really been that bad at all...

Many of you guys have suggested it and I'm starting to believe it that this all has to do with a growth spurt. He put on 7+ pounds in the last few months...he's getting taller... so maybe the amount & dose of meds that worked to keep him seizure free a few weeks ago now need to be increased/ tweaked to meet his growing body.

Makes sense...but if that's true it's scary to think that he'll be growing for about 9 more years...so every little growth spurt and/or every little cold is gonna come with a return of the seizures?? Fun! Fun!

Again, this is still scary uncharted territory for us and I'm sure we'll one day get used to seeing our sons eyes roll back into his head and watch him not "be there" for 30 seconds...But for now it's scary stuff...

But what's good about me & wifey is that even thru all this rough stuff we can ALWAYS sleep. When the going gets tough... WE SLEEP HARD! She's sleeping now and I'll be going down right after i post this...

And what's also good about wifey and me is that when he's not having seizures...and everything is back to "normal"... even if he's been seizure free for only 5-6 hours...we can easily forget all about them and go back to our normal wacky autism lives...

And then when the seizures come back our brains are like... "Oh shit, a seizure, let's get ourselves back to worrying and freaking out about seizures!"

Here's a perfect example of this...to leave things off on a positive note...

Here's a short video from earlier tonight, around 8pm of wifey feeding Paula peanut butter out of the cap and Paula's tongue is going to town! You can hear Kyle watching his Sesame bedtime DVD in the background and you can hear him eeeee-ing at the end...

Enjoy!


Thursday, January 3, 2013

Autism Parents: How much do you expect people to deal with? How much istoo much?












(ORIGINALLY WRITTEN & PUBLISHED ON JANUARY 3, 2013)



I wrote what I hoped would be a nice humorous post yesterday called "10 Things That Are Typical At An Autism House Party" and it got lots of nice responses & comments.  Many were jealous that we live in a big metro area and have lots of other autism parents to hang out with...but almost all saw the humor in the situation.

But i got one anonymous comment that said this... (the spelling/grammar errors are all hers...however, i am fairly certain that English is not her first language, so let's give her a pass on the spelling & grammar, ok?)

:-)

I was told about this blog by a friend, why because my nephew deal with asd(sister-n-law). The problem is he is 10 but his age level is 2. Now we have try hard to help his parents but his mother seem to think and act as if we owe her something,@ my child last b/day party her child ruin it for my child he torn her cake a part,he broke the X-box,in which she refuse to replace,he play with his spit that I don't won't wipe all over,he dig in his pants front & back,he dig in his nose and eat it but she want the family to make our kids play with him and let him eat with us and we can't do it + he wear diapers and I'm not changing the diaper of a 10yr old young man and he's not my child.(who would?)I'm not being mean just honest  we think she expect to much from us, I here her whine abt we don't know hard they have it or how the school better do something abt their child problem. This is not my fight. So now she is upset,mad because there was no invite to the holiday parties for her son. She have told us often that the school or the Drs. etc do not know him and don't listen to them,I so want to ask her why do she keep taking him to that school and just do it all her-self. The fact is we can't deal with him or please his parents I would like to know how much to you expect people to deal with ? he have spit on,bit,hit family members often and yes the the other children are scare of him and no we don't give her advice all we do is protect our children and she get offended over everything,don't ask her this or that,don't say this or that.She call a family member stupid and it got ugly so now family avoid her always ask if they are coming to the family gathering if so most want attend and those that do just keep close watch of their children and the food ask her to take diapers outside that also offended her. Outside of leaving them alone all together we don't know what to do. She also get mad when we talk abt us ladies going out to shop or a movie or just getting together like it's our fault she can't get a babysitter so when she's around we can't talk about doing fun things. How much is to much ?

Now as most autism parents tend to do, my first instinct was to get really defensive...and as most autism bloggers tend to do I immediately started to think about my rebuttal would be...should I write an angry response directly to her comment, or write an angry whole separate blog post about it...?

But then I read it again...and again...and again...

And you know what?  If the picture she is painting is accurate... I kinda agree with her on a lot of levels.  She might not have written it very eloquently...and I might not agree with everything she wrote... but a few things she wrote stuck with me...

How much do you expect people to deal with? 
How much is too much?

The asd son in question is 10.  From what she stated here...he sounds rather severe...or he was having a really rough day.  He was nice enough to be invited to a typical kid's bd party... and from the sounds of it he absolutely wrecked the joint!




Most typical parents that we know in our lives are extremely understanding, but if my asd kid bites family members, breaks an expensive xbox, tears a bd cake apart...I would NEVER expect to be ever invited back...And if we did, by some miracle get invited I'd probably NEVER go again anyway...

Out of embarrassment?  Kinda, yeah, but also out of common decency.

I've written on here before that sometimes the wife and I will keep Kyle out of situations where we have a hunch he will have a horrible time.  I covered that a lot in a post called "But He Was So Good When You Were Here Last Time" 

And I wrote a post about birthday parties (read) where I talked about how we used to get invited to typical kids bd parties when he was younger... but as he got older, we declined once or twice... and the invitations stopped coming...  I wrote this in that birthday party post...

The same thing happened years back when Kyle stopped getting invited to his typical friends birthday parties. Before his diagnosis mom went to a Mommy and me class and made a lot of friends. And for a few years we were invited to all their kids parties. And for a few years when they are young and the parties still have a toddler theme (gymboree, etc) our ASD son could enjoy the party and not stick out like a sore thumb. But as the typical kids got older their parties got harder for Kyle to handle and he wouldn't have a good time and therefore mom or dad had to be "on him" every second and therefore we wouldn't have a good time either. So we'd decline a few invites and then we'd stop getting invited. And that is fine. 
And Kyle's parties stayed the same. For the first few years they were a mix of autism kid friends & typical kid friends. But as Kyle got older, his bd parties stayed the same (still a toddler theme) Gymboree or pool, pizza and cake. And I never wanted my friends with typical kids to force their kids to come to Kyle's parties. 
So now we are squarely in the place where all we are inviting to Kyles bd party are autism kids (ok let's say special needs kids) and all the bd party invites we receive are from special needs kids. And that is great. 

 And I truly mean all that.  We have been blessed to have great family & friends & a great support system around us... And I've written on here before how we rarely even run into mean people out in public (read)...but there may come a day... when my Kyle is a teenager and weighs north of 100 pounds where he is gonna innocently destroy something TRULY expensive...or accidentally hit someone REALLY hard... and after that I won't be insulted at all if we are NEVER invited back to that person's home....even if it's a close family member.





This autism mom that's in question in the above comment?  Her biggest mistake was not being on her kid LIKE WHITE ON RICE.  My wife and I are on Kyle and are following him around at parties so that hopefully he can't even get in striking distance of breaking an xbox or getting near the cake or striking another kid...  I'm not saying it can't happen...but if one of those things happened at a bd party we would make a QUICK exit so that the other stuff couldn't happen.

And as for the anonymous commenter saying that this autism mom expects too much from her family...  This one is kinda tough... but maybe she does expect too much from her family.

Maybe all of us autism parents, myself included, expect too much from our families.  I think if I was a "typical" dad and went into a family member's autism home (or had them over my home) I would be extremely concerned & compassionate & would bend over backwards to make them feel comfortable and make any accommodations to make things easier for them...

but once they left, I'd probably be "out of sight out of mind"  I'd get bogged down in my own problems & issues which to the autism parents would seem absolutely minuscule.  This is what happens to most family & friends I think...because when they are living in their own "shit", whatever it may be...(my kid is failing spelling, my kid is 3 and not potty trained, my kid stutters a little) and it seems like a HUGE issue in their lives.

It IS a HUGE issue in their lives.

And their problems, as minuscule as they may be to us asd parents consumes all of their energy and brain power... and you are your situation are the furthest things from their minds...until they see you again... and see what your dealing with... and they think about how stressed they are over stupid stuff... and that's when they say "I don't know how you do it..."

Then they go home and forget all about and go back to their HUGE minuscule problems...

But that's just life.  There's not much we can do about that.

Maybe as autism parents, we do expect way too much from the outside world.   They are bogged down with what they feel are their own HUGE problems... and don't think about autism until they see a news story about autism... or in April when their Facebook newsfeeds get inundated with autism awareness month crap...  :-)  Then they say "how do they do it" and then they move on with their huge problems...

And again... that's just life.  There's not much we can do about that.

Bottom line here is.  The boy mentioned above is 10 years old.  He ruined his cousin's birthday party.  All the other kids in the family are frightened of the asd boy.   That's sad, but true...

And as the woman so eloquently stated...

How much to you expect people to deal with? 
How much is too much?
What do you think?  Am I way off base here???

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 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, January 2, 2013

10 Things That Are "Typical" At An Autism House Party...










(originally written & published on January 2, 2013)

The wife, king, and I went to an autism holiday “house party” a few days ago.  All kids on the spectrum aged 5-11, accompanied by their moms and dads.  These are mostly moderate to low functioning kids with one or two higher functioning or typical siblings in the mix.  


I like the autism house party just as much.  But unlike the birthday parties, these parties aren’t held at a gym or a pool or a fun place for the kids.  They’re held at one of our homes. So, it’s really mostly an excuse for the parents to get together.  I don’t think our kids enjoy it that much.  They are either indifferent or ornery… but whatever, the moms and dads hang out and have fun for as long as our kids will let us….and then we make a quick escape.

And I’ve noticed a few things.  So here’s a list of 10 things that are "typical" at autism house parties (at least in our section of Autism Avenue), but would be probably be untypical at a typical house party…get it?  :-)

1) I walk in to the bathroom to bring my son to the potty to find the seat up and a bowl full of poop, unflushed, no toilet paper.  Didn’t even give it a second thought…just flushed, and sat Kyle down for his turn…

2) Just like at typical mom & dad parties, the dads are in one room bullshitting and the women are in another room gossiping… but no one is sitting down…

3) It’s late December, late afternoon, and maybe 20 degrees outside, but there’s a boy at the party wearing only a bathing suit...nothing else…the whole time…I didn’t even bat an eye…nobody did…







4) Late into the party, the wife whispered in my ear, “don’t eat the guacamole” and I knew exactly what that meant.  One of the kids had either double or triple dipped, or stuck their boogery hands right in there and grabbed some.

5) Objects are being thrown, ornaments pulled, tantrums & meltdowns, and nobody bats an eye.  All you hear is “…don’t worry about it…it’s not breakable…he’s fine…leave him alone… do you want a beer?...”

6) There’s maybe 8 or 9 kids there altogether and none of them are really interacting with each other… mostly just wandering the house with one parent playing goalie, or watching shows, or reading books…there’s maybe 4-5 screens being watched at once, 2 Ipads, a tv in the playroom, and a tv in the living room, all while there’s music playing.  The most interaction you’ll get between them is them getting possessive over their ipads.

7) I walked by the bathroom to take my son a second time, and this time the door was wide open and there was one of the guys taking a poop.  He looked straight at me.  Unfazed, I waved at him, said “good job!” and moved on and wondered if it was him left the previous toilet bowl present.







8) All autism houses in our world seem to have a backyard trampoline.  And if it was just a few degrees warmer…maybe 29 degrees?...we would have thrown all the kids in the trampoline…

9) Speaking of trampolines, The rules/ warnings of how many kids are allowed on a trampoline at once, don’t apply at autism parties.  “ha look at this, it says one kid at a time”  In the summer, the trampolines at our autism house parties look like a clown car…

10) This might not fit in with the rest of the list, but I couldn’t really think of a 10th so here goes...  We are not talking about our kids.  We are not talking about autism.  We’re not talking about their schools or doctors.  We’re talking about sports, movies, the holidays, etc.  It’s quite amazing.  I’m pulling Kyle off the fireplace with one hand while holding a beer with the other hand while talking with the dads, complaining about the NY Yankees not making any moves this off-season…and nobody bats an eye…  :-)

That’s it.  Hope you enjoyed it!

THE END!






-- If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above or by going to http://www.amazon.com/?tag=a050ef-20  This way I can make a little money to help pay for my son's after school & weekend therapies.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!



Tuesday, January 1, 2013

4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow

Tues 4:37pm -- it's just the king & I at home this afternoon. The wife went to her parents house for a big New Years dinner with her sibs & nieces & nephews. The king has been pretty CRAZY the past couple of days so we really didn't even consider taking him.

He hasn't had any seizures since Friday thank god. But the combination of an increase in his anti-seizure med mixed with his now ravenous appetite (mostly due to the anti seizure med) mixed with no school or structure for a week equals Crazy Kyle

What does Crazy Kyle look like?

very aggressive, plays with his saliva, spits, has lots of pee accidents, is hungry all the time, wants to watch tv all the time, holds his breath like crazy all the time, clims on bathroom sink all the time, headbutts the tv, headbutts the window, bounces on the sofa, etc, etc, etc.

As the wife was minutes away from leaving for her folks house I was thinking of saying...

"Don't leave me! I can't take much more of this! I can't do this by myself today! I'm starting to lose it!"

But I got a second wind and instead said....

"Go! Save yourself! Get out while you can!!"

And she didn't hesitate and flew the coop... :-)

As I'm writing this the king is placing his saliva on the ottoman and headbutting the tv while watching the "Big Red Chicken" episode of Dora for the 89th time this week. There's popcorn & Cheerios all over the floor and Paula is having a ball vaccuming it all up.

And I'm lying on our love seat, curled up in a ball, in the fetal position, sucking my thumb and chanting this over & over & over..

"...4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow, 4 hours to bedtime & school starts tomorrow..."

Happy New Year y'all!

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