Friday, September 30, 2011

Too Many Feel Good Stories On Autism....And.... Please Don't Send Me Anymore Autism Links!




(originally written & published on September 30, 2011)


People are always sending me links to feel good stories about autism. They mean well, but they don't know the true side, the tough side...

And lately when autism is on the news it's a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad.

"They’re just a little quirky like the Asperger’s rocker on American idol a few years back" people might think.

I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won't eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.

I like to read the feel good stories too...but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, "why give them research $$, they're just quirky kids...." the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc..." 
I know there's always a lot of controversy around Autism Speaks and I'm NOT a fan of a lot of what they do, but I will say this. I have no issues with AS with the way they portray autism. Others in the Asperger’s community feel that AS doesn’t represent them, and maybe it doesn’t. But it does seem to represent those with severe debilitating autism. My son has SEVERE autism...

And I fall into this same trap myself of posting semi "feel good" stories.  A few weeks ago I posted a NY Times story (written by Amy Harmon) on my Facebook page about young adults with autism transitioning into the work force.  The article focused on a 22 year old young man named Justin with autism who's in the "middle of the spectrum" struggling to find a place as an independent adult.  I posted the article because I thought it was interesting and kinda inspirational, but something always kinda bothered me about it.


The Age Of Autism article gets into the vaccine angle quite a bit and I know there's lots of people on both sides of that issue.  But wherever you are on that issue, I think we can all agree that there's an autism epidemic in this country/ world and that there's TONS more people with autism now that there were a generation or two ago.

And I really like the way she describes her issues with this most recent NYT article on Justin. 

She writes...
(The NY Times author) focused her feel-good story on one young man who, despite his limitations, is working to live independently.  Justin struggles, as all ASD people do, but he's light years ahead of so many kids I know with autism.  Giving us a talented, verbal, intelligent young man like Justin neatly pushed aside the severely autistic people of the same age.  Harmon was good at describing the problem, but she offered us no solutions.  She calmly told us Justin barely talked until he was 10 years old with no explanation. Harmon gave us the rate of one in 100 with no alarm.  She noted that over 90 percent of autistic adults are unemployed, which is a scary concept considering the epidemic rate of the disorder.  Harmon wrote that autistic adults are out there in group homes or "living with parents."  Really?  I'm  still waiting for some reporter to actually back up that pretense by showing us the 40, 60, and 80 year olds living in those "group homes."  (And I don't mean someone with eccentric behaviors that could be passed off as autism.  I want to see the head-banging, rocking, non-verbal adults who are middle aged and older.) And I want a real journalist to find the autistic adults with a history where people remember that as a toddler they were talking and normally developing and who suddenly and dramatically lost those skills.)

Now I say...Rock on!  I totally agree!  Stop telling me that they are just diagnosing autism better! Find me the THOUSANDS of adults in nursing & group homes with debilitating autism! 

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And on a sligtly different subject...I started this blog post by saying, "People are always sending me links to feel good stories about autism".  You know what else, people are always sending me links and articles about?  Music therapy or horse therapy or dolphin therapy, etc., etc., etc.

"Have you heard about that? I've heard great things about that..."

They're thinking that it's a way towards a cure or healing these kids...

And while my son enjoys music therapy and might love horse & dolphin therapy, we know it's just another fun activity and in the best case scenario he'll pay attention and maybe get something out of it... but we're not expecting something magical or miraculous to happen

Like when we got our autism service dog. We were extremely realistic in our expectations. We hoped it would help with some safety issues and maybe Kyle would build a relationship and have some empathy towards another creature. And it's worked out nicely. It's still alot of work but totally worth it.

But people ask me about the dog DAILY. And I can hear in their voices when they ask the questions that they were looking for / expecting a miracle.   Sorry, no miracles here!

If we can get our severely autistic son Kyle even 50% of the way towards that young man Justin in the NY Times article we would consider that a miracle.

Sorry for combining 2 topics in one there... I was on a roll...

Thanks for reading!  I'm anxious to hear your thoughts and feedback!

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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!!

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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Monday, September 26, 2011

Today's School Rants -- Holding Breath & Loose BM's...

Today's rants...
 
So as you know, Kyle started school two weeks late.  Last Monday was his first week in his new school.  And while Kyle adjusted great, the wife got the "3 Head Treatment" but all in all it was a great first week and today was the beginning of the second week and the wife and I were finally breathing a sigh of relief as our lives were getting back to normal.  Then today two things happened that stressed us out...
 
#1) The new school had their own behaviorist observe Kyle and his holding breath issues.  Her thoughts?  That it started from a gastro-intestinal issue and that we go back and check more things medically.  We spent most of the summer ruling out medical reasons for the breath holding and were hoping the school would be able to put a behavior plan in place.  We've been down this "ruling out anything medical" road before and it involves dr visit, possibly xrays and it is TORTOROUS to Kyle and always leads to nothing/ inconclusive, so odds are that we are gonna ignore her advice... but what if she's right, what if we missed something medical.... ARRRRGHH!
 
#2) Monday (today), 12:22pm.  The school calls the wife to say that Kyle had a very loose bowl movement accident, and it got all over the place and he needs a shower, please come pick him up.  WTF??  Is he sick?  Nope... probably just drank too much chlorine pool water yesterday.  He rarely has poop accidents, so this is surprising.  But c'mon they are a school that deals with severely autistic kids all the time, many of whom are not potty trained.  They can't clean him up and send him back to class? There's only about 90 minutes left in the day!   If my wife wasn't a stay at home mom, what would they have done?  What if she was at her job, 60 minutes from the school?  I think this is a case of her being a SAHM and being so involved with Kyle (driving him to & from everyday) made them more comfortable calling her up and saying come pick him up.  I think it's time that the wife got an imaginary job for situations like this...   :-)
--

"He's In Such A Good Place Right Now... I Don't Want To Do Anything To Rock The Boat"

I find myself saying that a few times a year when it comes to Mr. Kyle when it comes to mom and dad trying to teach him / train him on something big...

Like potty training for example. Kyle was potty trained twice before. And the training stuck when it comes to poops, but he lost his potty training when it comes to pee-pee.

So twice we went thru this intensive potty training, first every 15 minutes, then 20, then 30, etc, etc, taking data the whole way, praise, corrections, etc, etc.

Again twice it worked and he was trained and in big boy underwear and twice he lost it (which is very common for Kyle)

So we had a behaviorist come in and give us an even more intensive potty training regimen/ routine which involves staying on the potty for 10 minutes at a time, bring all his favorite things in there, etc, etc.  And when I say intensive I mean that it's just as intensive and difficult on mom & dad as it is on Kyle.  Anyway, we've had this new plan for close to a year now and haven't worked up the nerve to start it.

It is so intensive that it means we should be home all day for 2-3 days straight and in the past we've always found a reason to put it off. Nice weather "we should wait for a rainy weekend" or a weekend event "we can't do it this weekend we've got the Sesame Live show on Saturday and ____'s birthday party on Sunday."

Now this upcoming weekend would be the perfect opportunity. Kyle's school is closed this Thursday & Friday for the Jewish holiday Rosh Hashanah, so the wife could get 2 intense days under her belt and then I can help take over in the evenings and on Sat & Sun...

But Kyle is coming out of an EXTREMELY ROUGH summer behaviorally and as you may have read he just started school last Monday after a 2 week delay due to major f--k up by our towns board of Ed.

And his first week of school has been AMAZING! He's done a 180. No tantrums or meltdowns and SO much better behaviorally at school AND at home. So after a crazy 4 weeks of summer + an extra 2 weeks our lives are FINALLY getting back to a sense of normalcy, well as normal as our lives can be.

Kyles back in school, the wife's getting back into her routine of going to the gym and having some autism mommy lunches during the school day, and filling Kyle's afternoons with fun productive activities (swim, ABA, movement class). And I'm not wasting vacation days on school tours and lawyer meetings.

So do we really want to rock the boat now and start an intensive potty training regimen when Kyle's in a good place and our lives are finally getting back to normal? Can't it wait til ___? (Columbus day weekend, Thanksgiving, Christmas)

Or is that a cop out and we are gonna put it off for another year?  I mean, we don't want to do it when Kyle is in a bad place, right?  It's just mom & dad who have to work up the nerve to dive in head first to that craziness again...

Maybe Thanksgiving, yeah Thanksgiving weekend sounds better...    :-)

Decisions, decisions...

Friday, September 23, 2011

THE STORY OF OUR AUTISM SERVICE DOG PAULA....

Paula's "Graduation" Pic :-)



(originally written & published on September 23, 2011)





People are always asking me tons of questions about our autism service dog, so I figured I'd write a post all about it.  As a bit of background, my son Kyle is 8 years old.  He has severe / classic / non-verbal autism and he is our only child.

So, my brother in law and my sister were sending me links for autism service dogs for years!  Finally in late 2008 we filled out a packet of information from the organization Guiding Eyes For The Blind (http://www.guidingeyes.org/) They have been placing service dogs with the blind since 1956 and beginning in 2006 have started placing autism service dogs with families through their "Heeling Autism" program (https://www.guidingeyes.org/prospective-students/children-with-autism/)

Get it, HEELing Autism, as in getting a dog to Heel...

Anyway, in early 2009 we had our interview with Guiding Eyes/Heeling Autism.  An amazing trainer named Caroline came to our house with a beautiful black lab to meet us, make sure we weren't kooks and seemed capable of handling the care of a dog, but more importantly she came to meet Kyle.  There was no miracle that day.  Kyle did notice the dog, and grabbed her tail as he ran by, which was all the trainer wanted to see.  We then took a leisurely stroll around the block with Kyle tethered and attached to this dog... and wouldn't you know it, Kyle just naturally grabbed on to her handle like he knew what he was supposed to do.  We were flabbergasted and so was Caroline.  Now at this point they'd placed maybe a dozen or so autism service dogs and she said she never saw a kid just naturally grab the handle.

A week later we got an acceptance letter.  We were in!  We had been approved for a service dog.  Now the hard part... THE WAIT!  12 months or more.  They have to pair the perfect dog with your kid and that takes time....

While we are waiting, let me take a step back and tell you more about Guiding Eyes and the process that they work with.  This may be very different from other autism service dog ORGANIZATIONS.  Now this is all in layman's terms.  If you want the official story peruse the Guiding Eyes site, specifically here (https://www.guidingeyes.org/about-us/journey-of-a-guiding-eyes-dog/ )

Anyway, the Guiding Eyes dogs are bred.  They pick the perfect male stud who's lineage has the right temperament to make a good service dog and pair him with a bunch of perfect females.  They have a HUGE kennel at their facility in Yorktown Heights, NY.  Anyway at some point after a dog is born, it goes to live with a puppy raiser.  This is a person or family who has volunteered to raise a dog as a puppy, give it basic obedience training, teach it not to pee or poop in the house, etc.  These people are AMAZING!  Why?  Because they do all the hard work.  They train these beautiful pups for 12-16 months and then they give them up!

They the pups go back to Guiding Eyes where a career path will be chosen.  Some dogs it's obvious that they'll make good blind guide dogs, other dogs have the right temperament for police work, other dogs just don't seem to have it at all (and are placed with a loving family), AND some have the perfect temperament to be an Autism Service Dog.

The way it was explained to me by the Guiding Eyes folks is that many of the Autism Dogs start out on a guide dog for the blind path.  , However, blind guide dogs need to be kinda aggressive, need to make their own decisions (to cross or not to cross, etc).  When they find a dog that is more passive, that waits for the handler to give direction, they redirect these dogs into autism service dog training.  The reason being is that with an autism service dog, it's the parents giving the commands.  (Other autism dog schools may do things differently, but this is the way it work with the Guiding Eyes/Heeling Autism dogs).

ANYWAY.... in May of 2010, we finally got word that we'll have our week long training with our service dog Paula at the end of May.  This is training for one parent (whoever will be the alpha male and be with the dog most of the time).  The one parent stays 5 nights at the Guiding Eyes facility.  So the wife had a week's vacation!  I took the week off from work and spent as much time up there as possible so I could get as much of the training & experience as possible.  Our family was amazing, picking up Kyle after school each day and hanging with him till I got home at around 7 each nite.

So very quickly about the training.  We met our GORGEOUS new dog (daughter :-) Paula, bonded with her and learned all the basics.  “Wait, sit, down, forward, etc, etc, etc.”  We practiced this EVERYWHERE that week…in malls, in restaurants, on busy city streets, etc.  And very often one of the trainers would play the part of an asd kid having a tantrum and we’d learn what to do and how Paula can help in that situation.    (These dogs thru all their training from when they were born were prepared for anything!  Screaming kids, loud noises, screaming parents J, etc.)
And I gotta take a moment to say that the 3 trainers we worked with were AMAZING!  They somehow knew more about autism and our daily struggles than many people / even experts in our autism world...  And they’ve only been doing this for 4-5 years.  Before that they were blind guide dog trainers.  Anyway…  AMAZING women.
Anyway, after a 5 day work week we brought Paula home to meet Kyle.  Nothing miraculous, but let’s just say Kyle didn’t ignore her and he noticed and seemed to appreciate her presence which in our world is a BIG thing.

So let’s get in to the nitty-gritty of what Paula helps Kyle and us with.  First off, you should know that we have the same rights as a blind person and are legally allowed to bring Paula with us EVERYWHERE (movies, restaurants, malls, supermarkets, playground, airplanes, etc).

Now Paula’s main job is to walk with Kyle.  She wears a special vest.   When Paula is wearing the vest, she is a working dog and shouldn’t be petted by strangers.  When the vest is off, she’s just a regular dog.  Anyway, she wears a vest and Kyle wears a special “belt” around his waist and he is tethered to Paula by a 2-4 foot strap.  (When they are out in public, he holds the handle on her best and they walk together.  Before Paula, we had to hold Kyle’s hand CONSTANTLY.  Now one of us holds Paula’s leash, Kyle hold her handle and we walk.  It gives him a lot more independence.  If Kyle goes to bolt, we tell Paula “WAIT” she freezes and locks up and Kyle can’t go anywhere.  That is her main job.   She also helps him navigate stairs better.  Before Paula, he’d fool around while walking and stop every step or so.  When attached to Paula he walks more typically, with more of a purpose. 

In restaurants, we usually ask for a booth.  We put Kyle on the inside, Paula lies on the floor, but is attached to Kyle and she keeps him closer to the table and hopefully more focused on eating.

The other big thing that Paula helps us with is meltdowns, tantrums, add, adhd.  When Kyle is having a meltdown or is extremely stimmy and can’t sit still (ants in the pants), we’ll attach them, put Paula in a down position, put on one of Kyle favorite tv shows and make them sit together for a half hour or so.  When it works it is MAGICAL! 
While on vacation this summer, we would attach them and Kyle would sit still and play with the sand for 30+ minutes!!  The sitting still part is HUGE in our world

So those are the main ways we use Paula to help us with Kyle.  It may not sound like much, but she is IMMENSELY helpful.   And most of the time, it’s not like we are forcing Kyle to stay still by attaching him to Paula.  He accepted it right away and sometimes he needs to be grounded for a half hour or so.

Do we bring her everywhere?  In the beginning, we kinda did.  Now we just bring her into situations where we know that she will be helpful (restaurants, movies, relatives houses, etc). 
Does she go with Kyle to school every day?  No…  And she kinda can’t.  Kyle is non-verbal.  Paula accepts commands from us (mom  & dad) and we can’t be in school all day.  So technically she can’t be with him in school all day.  She does go with the wife sometimes to help drop Kyle off and pick him up.

So, there will be weeks that go by that we kinda don’t use Paula as a guide dog at all.  But just with asd kids I think she might have a regression (“use it or lose it”) if we don’t utilize her skills often enough.  So we try to use her at least once a week out in public. 

Is it perfect?  No, not at all.  She is still a dog.  She still wants to eat ALL THE TIME and wants to play with socks all the time.  When her vest is on she is much better, but even when she is supposed to be working it’s not always perfect.   It's another situation in our lives where if Kyle was slightly higher functioning, slightly more aware, then we'd get a ton more out of the whole service dog experience.

But he's not more self-aware and he walks on and steps on the dog and when he does that she reacts and stops doing her job...which is frustrating for me & the wife, but totally understandable.  I mean they train and prepare these dogs for tons of different scenarios and situations but there ain't no training for a 55 pound oblivious kid stepping on your paw...

And there’s probably more things that Paula could help us with.  The trainers gave us a quick intro into “clicker training” and we could teach Paula to stop some of Kyle’s stims among other things, but clicker training takes a lot of time and work and is kinda like aba for dogs.  We barely have the time or energy to work with Kyle, so of course Paula’s clicker training takes a back seat. 

Anyway, that the gist of what she does.  It is not miraculous. It is not a cure.  It is not perfect.  But she is IMMENSELY helpful.   My wife and I were NOT dog people growing up.  And Paula has been a WONDERFUL addition to our family.  She is our daughter. 

Oh, and I don’t know if I mentioned this earlier but she was completely FREE!!  Guiding Eyes gives these dogs away for FREE!  Even the vet care is paid for if we bring her back to the Guiding Eyes facility in Yorktown Heights.    Would I have paid $10-13K for a dog like this (like other places want you to pay?)…probably, but I’d want more out of it.  I’ve heard of other dogs who are like blood hounds and can track missing kids… or who come already trained to stop certain stims (this is my grass is always greener syndrome coming out again).  If I paid over $10K I’d probably want those skills on top of what Paula brings. 

But what Paula brings is enough.  What Paula brings is plenty.  What Paula brings is beautiful, magical.  When I bring Kyle upstairs to go to sleep at night, Paula can’t wait to get up and jump on his bed and sleep with him.  (yes she sleeps with him J).  And you can see that she yearns for his attention.   Getting Paula is the best decision we’ve ever made for Kyle…

That’s all I got for now.  Please feel free to ask questions if I didn’t cover everything here.  I may add things to this note if I think of anything else.

Thanks for reading!

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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!!



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Monday, September 19, 2011

A Rant On Behalf Of Autism Mommy -- "Why do they look at me like I have 3 heads?"

I'm. writing this note on behalf of my wife...  Here's the deal and HER rant of the day.

My wife is a stay at home mom. This is by choice. No, I dont make a ton of $$ and yes we could probably use a 2nd income, but with Kyles challenges we made the decision that running his schedule and his life is a full time job.

So, how come every time we begin a new school year people look at her like she has 3 heads when she explains that we don't need a school bus for Kyle, that she will drive him to and from each day?

"Is Kyle afraid of the bus?"

"No he's fine on the bus. Takes busses on school trips with no issues..."

"Well if you ever change your mind and work up the nerve to put him on the bus, that option is always open to you."  All this is said to her like she's a worry wart...

So why do we not put Kyle on the bus?  Well, ok, worrying plays into it a little...  Every year there's a few stories nationally about a non-verbal asd kid left on the bus for hours...or dropped off at the wrong stop..  So that plays a part in why she doesn't put him on the bus...

The other reasons?

 1) it gets her out of the house ad starts her day nice and early. If the bus was involved she fears that she'll get stuck in a rut of sleeping late and staying in all day...

2) Her driving Kyle means that she knows EVERYONE and they know her. And she can rely on daily interaction with his teacher or aide on how his day went, even for just 60 seconds... instead of relying on his "communication notebook."

I think that #2 reason scares teachers the most sometimes. You would think they would want an involved parent, especially for our ASD kids.  But sometimes I think they want to just be left alone.

Like today, his first day at his new school, the wife stayed up til 3am wiring a detailed note explaining all about Kyle, his meds, his likes, his dislikes, etc, etc, etc.   She does this at the beginning of every school year and sometimes even coming back from break.

Well wouldnt you know it, the teacher looked at her like she had 3 heads when she handed her the note (and 4 copies for the rest of the staff). "Wow that's very efficient."

She also got the "3 head" treatment when she mentioned that she'll be driving Kyle every day. My wife said to me afterwards "what is so strange about driving your kid to school?"

And she got the "3 head" treatment when she asked if she can accompany the class on some, not all, but some class trips. (They do life skills trips to supermarkets and restaurants twice a month.)

"I'll have to ask if that's ok. No one's ever asked to come with us before.."

My wife to me afterwards... "What is so weird about wanting to go on my kids school trips?  Dont they want involved parents?"

That's all I got. I don't know how to end this blog post but it's just frustrating.  And this is a good school!  

What do you all think?

Wednesday, September 14, 2011

The Grass Is Always Greener On The Other Side...



I have "the grass is always greener on the other side" syndrome. In my mind I'm ALWAYS comparing Kyle to other ASD kids saying to myself "why can't he be more like ___?"

The wife doesn't have this syndrome. In fact we'll be at an event with multiple disabilities and we'll see a mom getting the ramp down in the minivan to wheel her severely PHYSICALLY disabled kid into the event and my wife will say "see we could have it that rough, be thankful for what we have". But wouldn't you know it my brain goes to "yeah but I'll bet that kid can talk or at the very least communicate his wants and needs. He might even hold down a job, or go to college..."

Damn this brain of mine!!

Anybody else have "the grass is always greener on the other side syndrome?"

Tuesday, September 13, 2011

I'll Never Doubt The Wife Again... :-)



I'll never doubt my wife again.... 

Kyle is STILL not in a school. (This is a LONG story that maybe I'll tell you about when the dust settles). 

Anyway we had 2 school tours today. 

And this morning as we are getting dressed the wife said "put him in the new light blue shirt. That brings out the blue in his eyes. And put his blue Converse sneakers on, people LOVE a little kid in Converse."

 Now I think she's out of her mind and it takes FOREVER to put those Converse on him. 

But her theory is if the teachers think your kid is cute they may overlook his behaviors.  All things being equal "being cute goes a long way in this world..."

So anyway we toured the two schools and wouldn't you know it at least 5 people commented on how he's got big beautiful blue eyes and 4 people said "love your Converse. You are the coolest."

I will never doubt the wife again...
(when it comes to fashion :-)

Sunday, September 11, 2011

"I hope Kyle can get back to where he was 9 months ago..."


Sometimes they say autism is like two steps forward and one step back...  With Kyle it's usually two steps forward, three steps back, repeat, repeat, repeat.

This dawned on me today as we started the fall weekend activities. Today he had his special needs swim lesson. Now last year we had a real nice routine going.  Kyle was doing great at his swimming, was starting to listen to his instructor and kick his feet...but MOST IMPORTANTLY was having alot of fun!!  And after the swim lesson and the shower and change (which he was enjoying) we'd go into the little cafeteria and he would sit and happily eat his lunch while watching Sesame videos on my iPhone. He would eat GREAT there and we would literally make a day of this one activity.

Well Kyle's behaviors have been a nightmare this summer and I said in yesterday's post we were deciding which fall weekend activities to even bother with.

Well we chose the swim lessons at the Y even though in the past few months he HATES going in the pool (EVEN THOUGH HE'S AN EXCELLENT SWIMMER!)

So I take him today solo and he did pretty ok in the pool and with his lunch...thats not the point of this note.  It's that the whole day leading up to the swim lesson and the cafeteria lunch I kept thinking "I hope Kyle can get back to where he was 9 months ago..." and then I realize that I feel that way alot.

While lots of ASD kids make progress and we hear lots of people say it gets easier as they get older we don't feel that way. For us it's gotten worse each year and we always find ourselves saying or thinking "if only Kyle could get back to where he was when he was ___ years old. It doesn't matter how old.  It's just that literally every year we can say that.

And we're not looking back and longing for the days when he knew his abcs, colors, shapes, etc (see this post for the story of Kyles regression). We're just longing for the days when we would sit still and eat an entire meal (sometimes with a fork!) and had a bigger variety of foods that he liked or drink water out of a water bottle without spilling it, or took joy out of swimming, car rides, playgrounds, walking around the block, school, etc.

Just a little progress that lasts and doesn't disappear would go a long way for this mom & dad and would recharge our batteries for the long haul ahead.

"I hope Kyle can get back to where he was 9 months ago..."

That's all I got. Over and out...  :-)

Saturday, September 10, 2011

Tough decisions for Kyle's fall weekend activities....



Tough decisions...

For the past few school years we've had our weekends filled with Kyle activities...special needs music therapy, special needs gymnastics, and special needs swim lessons. It was good. It forced us out of the house on Sat & Sun, gave us a jumpstart to the day, and Kyle enjoyed them all.

This year he doesn't like to swim anymore (even though he's a GREAT swimmer) and I can totally see him tantruming thru the entire music therapy session.

So do we skip all these activities? They aren't cheap so it would suck to spend $$ and have him be miserable, but not having an agenda for the weekend isn't good for us or Kyle. I can easily see us getting stuck in a rut where we're home each Sat / Sun til 2pm in the afternoon...and that's not good...

But...we don't want him to learn that he can tantrum his way out of anything... And maybe he can learn to like them again... Maybe he just needs a few weeks back in the old routine...

But....why make the kid miserable?

Decisions, decisions...

Wednesday, September 7, 2011

This is the type of school they are sending us to?



So today was supposed to be Kyle's first day of school but because of a series of events that I will detail when the dust settles he was home and currently does not have a proper placement. The school district for months have been trying to get us to visit this school that we know is TOTALLY inappropriate for Kyle, and we've resisted on those grounds...but on the advice of our legal counsel (yep :-) we were told to tour the school and have them evaluate Kyle so we can show our district that we've been compliant. So the wife calls the school to say we want to see the school this afternoon. The woman says "you can come at 1:15pm today but it you'd see a lot more and get a better feel for the school if you came around 10am tomorrow". The wife asked what the difference between being there at 10am vs 1:15pm was. The woman says "well at 10am you could see the students working on math, social studies, reading...". The wife says "uh Kyle is non-verbal and can barely identify his shapes..."

This is the type of school they are sending us to... Do they even read the IEP's and reports they are sending out? WTF??

....and the drama continues... to be continued

Monday, September 5, 2011

Autism Daddy's Greatest Hits!! April thru July 2011....



Below is a list of 79 of my status updates from when I started my Facebook Autism Daddy page in mid April til the end of July. I numbered them all for easy referencing. So if you're commenting on a specific post please include the number. :-)

Here goes!!!!

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1)  Kyle sat on the bathroom sink again...pipes separated, water all over the floor. Happens once every month or two...and Autism Daddy is not the handiest dad so duct tape is my best friend.
April 21 at 8:56am

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2)  Kyle did it again... He put a brand new roll of paper towels in the bathroom sink and turned the water on. :-( At least it wasn't something more expensive. A few times he's done that with a whole pack of pull-ups, and one time the wife's IPhone....
April 23 at 2:30pm

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3)  We played with fire this evening... The wife and I dragged the kid to Costco with us... Very dangerous...and on a school night no less... He didn't love it but sometimes the kids gotta learn to go with the flow... We do everything according to his schedule, so once in a while when daddy needs 4 cases of Gatorade you gotta come along for the ride...
April 25 at 9:42pm

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4). ‎"Ways That My Life Is Different #17"... We can't leave hand soap (or any soap) out in our bathrooms because Kyle like to eat it. He's really tested the concept of "non-toxic" on product labels!
When guests come over we have to instruct them to unhook the child proof latch below the bathroom sink and grab the soap from down there... and replace it and lock it up again, don't forget! :-)
April 28

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5). ‎"Things That Make Me Go Hmmm" #23
We get a cleaning woman every 2 weeks. (It's one of our only perks & totally worth it.). And somehow every morning after the cleaning woman was here Kyle has an accident & wets the bed and we have to rechange the sheets we just changed yesterday...

Oh and it's the only time he has an overnite pee accident. Twice a month, right after the fresh sheets were put on.

Cleaning woman was here today & already Kyle pulled out his pecker and peed in his clean playroom. He NEVER does that!! I will report tomorrow morning if I'm changing his sheets again...
May 3 at 6:58pm


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6)  Kyle never saw a pair of glasses that he didn't want to rip off someone's head! I wear contacts 95% of the time, but this week my eyes have been bothering me so I've been putting on my glasses as soon as I get home from work. Kyle looks at me with this sweet smile, gives me the best eye contact and then proceeds to rip them off my face all the while laughing hysterically. This has been going on all week....
May 5 at 7:41pm ·

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7).  Y'all know about respite care? We get $200 per month for respite care from our local OPWDD / DDSO (Office for People With Developmental Disabilities / Developmental Disabilities Service Office) formally the OMRDD. It is not income based (unless you make ALOT of $) but it is needs based so the more severe your circumstances the more likely you'll quality. That $200 per month can go towards at home therapy or baby sitters.

It is not easy to find out about so you really have to do your research. Google your states office OMRDD / OPWDD /DDSO and see if your state has similar services..
May 7 at 8:39am ·

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8)  We had Kyle's 8th BD Kids Party today at the YWCA. One hour of swimming & one hour of partying. Pretty much all kids on the spectrum & their sibs. We've pretty much stopped inviting our friends w/ typical kids years ago & vice versa. No hard feelings but their kids wouldn't have a good time at Kyle's party & vice versa...But everyone seemed to have a great time! No major meltdowns...
May 7 at 8:23pm

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9)  Kyle had quite the meltdown yesterday in the car on the way to his bd party. I was so proud of myself for actually figuring out what caused it. :-) He was snacking on mini-marshmallows and starting playing with them. Before you know it, both his hands were extremely sticky and he went bat shit crazy and just lost it like I haven't seen in a LONG time...
The whole drive I was going back & forth with trying to reason with him "we're 5 minutes away & daddy will clean your hands as soon as we get there" to out & out rage cuz during meltdowns Kyle pulls down the fabric roof in the back seat. Yesterday he was pulling it down & biting it and I kinda went bat shit crazy...
May 8 at 6:00pm


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10)  There should be a sign in our house that reads "In Case of Emergency, Make Popcorn" because we always forget...
May 10


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11) The wife, kid and I all sat down and ate dinner together at a regular dinner time for the first time in I don't know how long... It was a glorious 17 minutes...
May 19 at 6:36pm

Thank God for Fall TV & DVR's :-)



The wife & I are tv geeks. And at 41 years old we still get just as excited for the new "Fall TV Preview" issues of TV Guide and/or Entertainment Weekly as we did as kids. TV is a HUGE escape / relaxation for us and the DVR is the greatest invention for asd parents. Nothing better than sitting down on the couch after getting Kyle to sleep with a DVR full of new episodes of...

Community, 30 Rock, The Office, Parks & Rec, Modern Family, it's Always Sunny in Philadelphia, Louie, Entourage, Curb Your Enthusiasm, Survivor, Amazing Race, American Idol, Biggest Loser...How I Met Your Mother, Weeds, Dexter...

Sunday, September 4, 2011

What is Autism Daddy?



This is the non Facebook home to my Autism Daddy Facebook Page which can be found at http://www.facebook.com/AutismDaddy

I will post most of the Autism Daddy greatest hits here, but I encourage you to "like" my Facebook page too!

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