Tuesday, February 26, 2013

Respite Services! All About How We Got It...the hows, why's & who's

(originally written & published on February 26, 2013)

This is my informational post about what kind of respite services & Medicaid waiver services we've received over the years.   Let me jump in now and say I don't want this post and the comments below to turn into a jealousy thing...or "why are you getting these services, you're middle class". 

I've said it before and I'll say it again...

We live in the NYC Metro area and pay some of the highest taxes in the nation and because of that we have more programs available to us.  I am just seeking out and taking advantage of all the services that are available to me and my severely disabled son who is going to be me & the wife's responsibility for the rest of our lives. 

I'm writing this for informational purposes and to give you another window into our world and to show you how the system works...in the NYC Metro area.

Ok, here goes...

I've written on this blog before about how I think us autism parents getting breaks and being more selfish is healthy and necessary to keep our kids happy & healthy and to keep us happy & healthy and functioning as good parents.  (you can read that post HERE)

And if you read my FB Page often, you'll see that the wife and I try to get out 2-3 times per month. 

In the past we would usually rely on family members.  The wife and my siblings have each had some major Kyle baby-sitting gigs over the past few years and we love them for it.  And when our niece was old enough we had a nice stretch where we would pay her ($10-$12 an hour) to babysit.

Most of these babysitting gigs (I hate using the term BABY, but whatever...) were in the evening / at night and Kyle's been a pretty good sleeper since we discovered melatonin (read).  So I can count on one hand (ok maybe two) the number of times watching Kyle has been extremely difficult.  Most nights he goes to sleep by about 9pm.

But anyway, we have some autism moms & dads in our circle of friends who were getting respite hours thru a Medicaid waiver.  They would get a certain number of hours per week of a
respite worker...someone to watch their kid. We had the Medicaid forms sitting in my office for a few years, but we never completed the process because it was lengthy and complicated and because at times we can be lazy especially when it means filling out pages & pages of forms that make us recap every little thing that ever happened with our kid, every milestone he missed over the past 9 years. 

I wrote a post about this called "Oh No!  Not the motherf--king patient history form!" that you can read HERE.

Anyway, we put off filling out the Medicaid waiver forms for a few years, but in the meantime we got hooked up with our county's Developmental Disability Service Office (DDSO) and met the angel that runs it.  And she told us about a respite reimbursement program that was currently available only if you were NOT in the Medicaid program.  She just got a grant, the $ was available, and the timing was right.  And for a couple of years we were able to get $200 reimbursed to us each month for money we spent on "respite"

"Respite" is what the forms said... but what that actually meant for us was the $25 per hour we were paying for at home ABA back then (2x a week) was getting reimbursed up to $200.  All we had to do was fill out a timesheet of who worked when and how much and they would reimburse us.  Our ABA therapist didn't have to be registered or an official employee of any agency.

By the way, how did we find our ABA therapist?  She was one of Kyle's teacher's aides years back when he went to an all ABA school and we contacted her years later to see if she wanted some side "off the books" work, and we negotiated the $25 per hour rate...which for a trained ABA therapist in the NYC area is a good rate.

As I said we were getting that $200 reimbursement for a couple of years... and it mainly went to reimburse us for the $ we shelled out for ABA.  But it sometimes went to reimburse us for my niece who would babysit Kyle maybe once or twice a month so wifey & I could do dinner & a movie, or go out to a dive bar to see our friend's cover bands.

Then in early 2011 things changed as they always do...

My niece got older and busier & wasn't as available as often and our ABA therapist got pregnant and left us...and there was talk & rumors of the funds from our $200 respite reimbursement program drying up & going away.

There was also rumors about the Medicaid waiver eligibility process getting more difficult and the number of respite hours they provide being cut drastically.

So in the spring of 2011 when Kyle was at his CRAZIEST we FINALLY filled out the Medicaid forms and got the process rolling.   In fact one of the first things I posted on my AD FB page & this blog is the letter that my wife had to write which accompanied the Medicaid application.   Part of the process included my wife writing a letter explaining why our case is an EXTREME case. This letter was one of the first things I posted on my Autism Daddy FB Page & Blog. 

You can read that letter HERE. 

In fact if you want a better picture of Kyle at his CRAZIEST I implore you to read that letter. 

We will wait for you...

The post was called "Welcome To The Jungle--a window into our lives raising Kyle".

Read it HERE!


Did you read it?  Ok, we are back...

So we wrote the letter, filled out the reams of paperwork.  We got assigned a case worker and my wife had to go with her case worker in person in front of some board to plead her case and get approval and in August of 2011 we were approved for Medicaid and 6 hours of respite per week.

As I've written in a previous post (that you can read HERE) we were looking for the respite, but it came with a Medicaid card.  So, Medicaid is now the king's supplemental insurance.  It picks up where my regular insurance leaves off for lots of things including all medicine copays, and some therapies that we wouldn't be able to afford without it (like his weekly sessions with a behavior therapist for his breath holding).  So that alone has been extremely helpful & valuable.

But back to the respite hours.  So they gave us 6 hours per week and a list of "agencies" to choose from.  These agencies can assign you a respite worker or you can find your own and sign them up to get paid thru their agency.

We never wanted a complete stranger watching our kid, so we first recruited a 19 year old dude.

 "Bill" is the older brother of one of Kyle's autism friends.  He is so mellow and always so great with all kids.  So we tried him out as a babysitter for a few times and paid him out of pocket.  Kyle took to him IMMEDIATELY.  Kyle does things with Bill that he doesn't do with ANYONE else.  Bill's mellow personality and gentle, but firm manner just mellows Kyle out.  It is quite amazing!

Bill gets Kyle to sit with him and play on the iPad quietly and appropriately for hours!  They will sit in his corner nook in his playroom for long stretches where, with mom & dad, getting him to sit still for more than 5 minutes straight is difficult!

And forget about feeding!  When Kyle was going thru his weight loss and real picky eating phase, Bill could get Kyle to eat when no one else could.  Even now that the king's appetite is much better we still sometimes say things like, "He hasn't been eating the chicken that much anymore, but Bill's coming over, maybe he can get him to like it again." 

Anyway, after trying him out and paying him out of pocket a few times, we got him signed up thru the agency.  He had to get fingerprinted and go thru an orientation with them.  And with our help & input the agency wrote up some "life skills" goals that they want Bill to work on with Kyle each time he's there. 

And we made sure that after taxes Bill was taking home as much as we would have if we paid him like a sitter out of pocket ($10-12 per hour).  If after taxes was too low, we would have supplemented him.

So we've had Bill with us since the summer of 2011 and we've been in a nice groove where we would get him almost every Sunday evening from about 5pm-9pm.  Sometimes the wife and I sneak out to dinner & a movie.  Sometimes we just stay home and just hang out and do errands.  Once in a while we'll go to a family member's house for a birthday or occasion without Kyle.  (which blows our family's minds!  I wrote about one occasion where we didn't bring Kyle HERE)

Yes, we could take him with us.  We have autism parent friends who also get respite services and sometimes they'll bring their respite worker with them to a therapy session or a bd party just as an extra set of hands.  But we haven't felt the need to do that yet.  Kyle & Bill have a nice routine down in our house and as the wife often says "we don't want to ruin their chi." 


So in the fall in 2012 our agency made us realize that we had a backlog of respite hours left.  

We get 6 hours per week, but they unofficially bank them.  So it's 312 hours per year (52 x 6 = 312) and by Dec 31 it's "use it or lose it".

The reason for the backlog?  You know, we go away in the summer for a week and don't use Bill.  Kyle is sick and we cancel.  Bill is sick and he cancels.  You know, the usual.

So the wife and I said, "We should find a second respite person.  Maybe someone who can come in the one or two afternoons during the week."  And we wracked our brains and then we remembered "Nancy"!

Nancy was his 1:1 aide back in Sept 2011 when he first started in the school he's in now.  She was only a substitute until they found an appropriate aide for Kyle.  We LOVED her & Kyle LOVED her and she was with him back in the CRAZY Kyle days that the wife wrote about in her "extreme case" letter above. 

She was his 1:1 for a few months until they found his permanent 1:1 who was also great (but we would have been happy to keep Nancy).

Anyway, we contacted Nancy to see if she lived close enough and if she was available.  And she was!  Very different situation than Bill.  Nancy is a mom, maybe in her early 30s?  (who knows? :-) who was thrilled to have an opportunity to make some extra $$. 

We didn't need to try her out first.  We knew Kyle & she had a good rapport.  So we had her sign up with our agency.  And she now comes over at least one and sometimes two afternoons a week. 

It's not as magical as with Bill, but the king really likes her.  And she's great about pushing him.  And getting him out of his comfort zone.  Let's just say this...For the 3 hours she's there sometimes, the tv is not on at all.  He may "ask" but Nancy will redirect him...but for the most part they spend a huge chunk of their time in the playroom reading books, playing with moon sand, playing with the iPad.  And the king doesn't fight it.  He is fine with it.  With mom & dad... these activities are a struggle.  We'll get maybe one book or one activity in before he's bolting for the living room tv.

And with Nancy, the wife is starting to take her with them to places.  They recently tried out a special needs dance class one weekday afternoon and Nancy was there as an extra set of hands and it was EXTREMELY helpful and necessary...

Anyway, that's my LONG story.  We now have "Bill" & "Nancy" on the payroll and we couldn't be happier.

My tax dollars at work. Now again.  This is how things worked for us in downstate NY.  I have no idea how things work in other places...

I think I'm gonna end it there... Wow this was a crazy long and rambling post.  I hope this makes sense and wasn't too boring for y'all!

I don't know why, but I'm curious and a little scared of the comments I'm gonna get on this one...LOL





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!!

Sunday, February 24, 2013

Why The F Are They Still Sending Us Report Cards??

(originally written & published on February 26, 2013)

Sat 11:32pm -- I was cleaning up my home office earlier this evening when I came across an envelope from Kyle's school that the wife had previously opened and must've dumped in here a few weeks back.

I opened it up and it was his "report card" for the second "marking period".

Back in the early days of autism we would've read something like that intently looking for a glimmer of hope or progress, but would almost always get depressed instead.

This time? I chuckled to myself when I realized what it was and how long it's been sitting there.

The I tossed it aside into the toss it pile.

It wasn't a specific written progress note from his speech teacher or his OT. And this wasn't the kind of detailed report that you'd read from and reference in an IEP meeting. Those kinds of reports I would've paid a bit more attention to.

But this was almost like the equivalent of a typical 4th grader's report card. Ok, maybe not a typical 4th grader's report card but it's still the kinda stuff that's over my son's head.

It's got a numbered grading key.

And as usual for Kyle's report cards, there's always mostly 1's or N/As on it.

Why even bother? Don't even waste the postage.

Sorry to be so glib but why the F are they still sending us report cards for?

I guess I'm a jaded parent of a kid with severe autism...but we've been on this same autism roller coaster for a LONG time now.

And through those years the wife and I have hardened & toughened.

We love our kid and we know what he knows and what he doesn't know.  My wife drives him to & from school every day and gets daily reports & feedback with his 1:1 aide.

So I'm fairly confident that there's nothing in that report card that's gonna surprise me or depress me or make me happy.

Oh wait, he's at grade level and/or "Meeting Standards" for taking turns!!

That's something, right?



I know, I know, the school has to send them... that's the law, etc.  I got no beef with the school that Kyle goes to... I'm just a jaded, hardened ol' severe autism dad... that's all... :-)


  If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above?  This way I can make a little money.  This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!


Tuesday, February 19, 2013

A Quick Audio Clip of the King Laughing in the Dark at Bedtime...

Tues 9:23pm -- So as many of you know Kyle's been stuck in the house since Friday suffering from strep throat.  The wife's been feeling like crap all weekend too.  They're both feeling better today.  

When I got home from work I posted this on Facebook.

So at around 7:30pm I woke him up to give him his meds.

And of course that threw off the whole bedtime routine for his majesty.  He was still kinda tired, but he was a little loopy.  I let him stay up a little while longer and at around 8:45pm turned off the lights and tried to coax him to sleep.  

I recorded this at around 9pm.

It's audio of the king laughing hysterically, while holding his breath, while playing with his youknowwhat, while hitting me in the back once in awhile...

And after all of this I thought he'd be up for hours.  But he giggled himself to sleep by about 9:25pm.

That's it!

That's all he wrote...


Sunday, February 17, 2013

It's Gonna Be a LONG Sunday...(and Monday?)

Sunday 8:46am -- The king and I have been up since 6am.  He's got strep throat so he's been stuck in all weekend.  Day 3 of antibiotics so he's probably not contagious anymore...but he's still got a cough and is sleepier than usual so the strep is still kinda kicking his butt.

Yesterday he stayed in all day and the wife and I "tag-team" parented.  She slept late and I took the first shift, then she got up and I ran some errands (pharmacy, food shopping, etc).  

Then in the afternoon I took over until the evening when I had to leave for my HIGH STAKES NO LIMIT TEXAS HOLD "EM POKER TOURNAMENT that I played in last night at a friend of a friend's house.

From 7pm-midnight I got to play poker and drink beer and bullshit with 29 other guys...and feel like a MAN... a real typical man...

It was glorious!  I didn't win any money.  Only the top 5 players were "in the money" but I came in 8th place out of 30 guys which is damn respectable for me who plays but once a year!

I got home around 12:30am and the wife was already sleeping.  She woke up when I came in and was complaining of a massive sore throat.  She said Kyle was being so cuddly and affectionate towards her last night.  

That is kinda rare for my wife. Very often the king will be more affectionate with people he's just met...and mommy gets the shaft.  And that makes her sad sometimes.  

Because he was being so affectionate with her, my wife said that she couldn't help but to hang with him and soak it all up...but she said at one point,

"He literally coughed and sneezed in my mouth and face.  I could literally feel myself at that moment getting his strep."

So I'm all wired up from getting home from an exciting poker tournament and she's preparing me for the next day.

HER..."I'm feeling like crap.  If I feel like this tomorrow I'm probably gonna need to take to the bed for a big chunk of the day.  So prepare yourself for hanging with Kyle all day tomorrow.  And PLEASE have more patience with him than you've had lately.  If he feels anything like I feel now then he's been in a GREAT mood considering.  Give him lots of water.  Let him watch as much tv as he wants.  Don't let little things stress you out."

And I'm already negotiating...

ME... "Just take some advil and you'll feel fine.  Besides if you're already sick than you should hang with him and I should just leave or 'take to the bed' so I don't catch it."

She just rolled her eyes at me and went back to sleep.

So here we are.  The king and I watching "Jack's Big Music Show" on the couch at 9:08am.  Wait, how can it only be 9:08am!!  I've only been up with him for 3+ hours?!  How is that possible?!

Ugh, I kinda feel like a prisoner in my own home.  And I think Kyle's kinda feeling that way too.  He's getting "cabin fever"

In a few hours I'll probably say to the wife, "Do you have any errands you need me to run?  Didn't you need a lot of stuff from Trader Joe's?  I'll take Kyle with me.  He's not contagious any more.  It's not that cold out.  He just needs a change of atmosphere.  I'll even keep him in the cart the whole time.  Please!  Pretty please!"

And she'll be the voice of reason telling me no...

He's really been good so far this morning.  I can't complain.  He's in a fairly happy mood.  But we are already both getting bored.  And we've got 11-12 hours to go!  

This is gonna be a LONG Sunday... And guess what?  Tomorrow is President's Day so I've got no work so I have a feeling that Monday is gonna be a repeat of today.  

Oh well... I guess boring is good compared to a lot of other things.  I just need to heed my wife's advice.  I just need to keep my patience.  I need to not stress all the little things and let him get away with a little bit more than usual since he's not feeling well.

But the holding breath, and the saliva play, and the hands in the pants constantly, and the couch bouncing, and the climbing on the bathroom sink, and the tv hitting!

And now it's only 9:31am!?!

"Honey, I think my throat's kinda sore too.  I'm gonna need a nap for a few hours..."


THE END!  Just a quick, silly Sunday morning "slice of life post"...

Saturday, February 16, 2013

In Defense Of Autism Speaks

(originally written & published on February 16, 2013)

As April is fast approaching, and Autism Awareness Day & Month & the "Light It Up Blue" Autism Speaks campaign are right around the corner, I felt compelled to say something in defense of Autism Speaks.

First off, I will readily admit that I'm not always a huge fan of everything Autism Speaks.  I wrote a post last April about supporting smaller, more local autism charities.  You can read that HERE.  But in that post I did write this…

"...I know there's always a lot of controversy around Autism Speaks … but 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..."

But I’m getting off track.  That’s not the reason I’m writing today 

The reason?  Because every March/April the whole anti-Autism Speaks thing comes up again…and a big reason people bash AS is because  they say their executives make too much money or they spend too much money on parties and events.

Mark Roithmayer, President - Salary: $400,413
Peter Bell, Executive Vice President - Salary: $265,981

I’m here to say it loud & proud…the whole “their executives salaries are too high” argument is just  plain silly...

I have friends who work in the nonprofit world and every big nonprofit gets this bad wrap... but you know what? You gotta spend money to make money...

If you want the best, most competent, experienced ceo & executives to take your organization really far you need to pay for them… And these salaries are the going rate for these types of executives in NYC.

Also, if you want to fundraise on a big scale, you gotta throw parties... that's just how it works.

 I raised $$ for the Michael J Fox Parkinson’s Foundation last year and it is the same way... Their execs make big bucks!

And I raised just over $3000 and I’m invited to a lavish "awards dinner" in April....

Too much, too extravagant?  Maybe.  That was my first instinct… but I gotta admit that I’m excited to go.  And I’m sure the hope of the party is probably to bring in some more corporate big bucks donors... So the party will more than pay for itself.

And on a national scale, just like Autism Speaks, the Michael J Fox Parkinson’s Foundation is doing a lot of good...

Maybe on paper maybe the percentage of every $ that gets spent on autism or Parkinson’s is smaller than you'd like? I get it... but they are doing this on a MASSIVE scale with millions of dollars in play... And on a national level they do a lot of good...

So, back to Autism Speaks.  Hate them for other reasons if you want.  You feel that they put too much money into research. I get it.  You’re kid has aspergers and you don’t like the way they portray autism.  I get it.  (I don't agree, but I get it)  :-) You don’t think they don’t do enough in your local community.  I get it.

But the high salaries and the extravagant parties?  That’s just the cost of doing business on such a massive scale.

That is all.  I will get off my soapbox now and prepare to be torn apart by y’all…


Tuesday, February 12, 2013

A Quick Video Tour Of The King's Bedroom

Here's a rather boring / uneventful video... which is exactly how we like things around here.

Tues 7:45pm -- The king had just had his evening meds and his melatonin and he, Paula, and I went up to his room to hang out and watch Sesame on the Ipad.

Hope you enjoyed this peaceful quiet moment in the AD household....


Sunday, February 10, 2013

Ask Autism Daddy A Question! A simple, "one sentence answer" type question... :-)

Last night on my Autism Daddy Facebook Page I opened up the floor for all of my followers to ask me simple yes/no type questions. This was a chance for y'all to ask me all those things you've been dying to know about me, wifey, and Kyle.

It was a lot of fun and I answered tons of questions, but with the way FB comments work it got very unwieldy and out of hand very quickly.

So below, for your reading pleasure, I'm going to repost all the questions from FB along with my answers.

And if you have any other "simple" questions for me please ask them in the comments below this blog post and I'll try to respond directly to your comment as quickly as humanly possible.

I know I normally don't always respond as much or as quickly as I should to comments / questions on FB & the blog. I wrote about the reason why HERE. But this time I promise to respond as much as possible.

Ok, without further ado, here are the 31 questions.

1)        Does the stimmimg drive you mad? 
Depends on the stim..., but yes many do...

2)        Do you love your life?
4 days out of every week yes, 3 days no... :-)

3)        Can you always tell the difference between behavior that is a result of autism, and normal childhood behavior?

4)        Did you decide not to have more children out of concern that there is a genetic link to autism?
YES , I wrote about that HERE

5)        Does Kyle do any therapies?

6)        Does the autism ever "spoil the mood"?
YES, autism ruins the mood a lot around here… 

7)        Does it ever get any easier? (from an exhausted, emotionally destroyed and overwhelmed mom of a 2.5 year old on the severe end of the spectrum)
Yes it gets easier... Then harder, then easier

8)        Does your wife ever come on the blog? 
Yes my wife reads the blog and FB page and even comments every once in a while.

9)        Does Kyle toe walk? 
Yes, sometimes.

10)      Have you ever fantasized about Princess Leia in the gold bikini? 
Yes of course! 

Wednesday, February 6, 2013

Don't Believe Your Ears...

Wed 7:31am -- I'm in the basement loading the washing machine.

The whole time I'm down there I can hear the king.

He's "eeeee-ing" loudly and he sounds really distressed and anxious.

This goes on for almost 5 minutes. And I'm about to yell up to the wife,

"Are you with him? What's bothering him?"

But I don't, and I go upstairs in a few minutes and my perspective totally changed.

He was sitting at the table happily watching a show on his iPad while eating pancakes & bananas & happily "eeee-ing" loudly.

No distress, no anxiousness, just happy.

Funny how your perspective can change so quickly.

The lesson here?

Don't believe your ears.


Related Posts Plugin for WordPress, Blogger...

© 2011-2018 Autism Daddy / Frank Campagna. All Rights Reserved