Wednesday, October 24, 2012

"How's Kyle today?" -- "He's doing ok...BUT..."




(originally written & published on October 24, 2012)



Lately I hate answering my phone when it's my mom.  Since back in May when Kyle first starting having seizures.  And I'm sure the wife feels the same way about her parents.  And she probably hates getting my 3pm texts asking "How was Kyle's day at school today?"

The reason?  People want to hear good news.  And there always expecting to hear good news...and when you give them bad news it's like a punch in the gut to them.

I don't know why our folks and siblings should still be shocked when we don't have good reports to give them.  It's par for the course with us over the past 7+ years.

But they still call and ask

"How's Kyle doing after the hernia surgery?"

"How's Kyle doing on the new anti seizure med... Any more seizures?"

"How's he been at school?  Still aggressive?"

And I can hear the hopefullness in their voices.  They want you to tell them good news.  And sometimes I want to give them the standard answer that I give co-workers & colleages when they ask how my son is doing.

"He's doing great.  Yeah, he's 9 now.  Getting big...time flies..."

But they are family, and they are truly concerned and they want to know so we usually start out with.

"He's doing ok.....BUT...."

"...BUT... he's still out of sorts since the hernia surgery..."

"...BUT...he's being very agressive towards his classmates & teachers at school...."

"...BUT...he's still getting dizzy and bumped his head a few times on the new meds..."

And alot of these answers will be followed by silence... and then a ton of followup questions, which always includes...

"What does the doctor say?"  OR  "What does the school say?"

After all these years don't they know that when it comes to most things autism doctors don't have any answers & now we are learning that when it comes to most things epilepsy, doctors are guessing as much as we are?

And the school?  They are trying their best.  I believe that... but they don't have any answers either...

But anyway, back to these phone calls...  The hopefullness in their voices when they ask the initial question "How's Kyle?" is a killer.  I sometimes hate answering that question.

And I fall into the same trap with my after school check in texts.  I text the wife everyday around 3pm all hopeful that things are on an upswing and I can tell when I ask "How's Kyle?" And I get back a quick "ok" text that there is a "...BUT..." text coming and I sit there waiting for the punch in the gut.

And here's today's exchange...



Yes, that was like a punch in the gut.  Why do I keep sending the 3pm after school check in text?  It makes my last 3 hours at work a lot harder...

I think I'm going to give it up and stop asking.  Ignorance is bliss...

But at least the dishwasher is clean...   :-)

THE END...


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




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Tuesday, October 16, 2012

What "Progress" Looks Like On My Corner Of Autism Avenue






(originally written & published on October 16, 2012)



Sometimes we are so focused and wrapped up with this month's autism crisis (Seizures, Aggression at school, biting, etc) that we don't even notice the progress that's happening.

No, to all my parents of high functioning kids, this will not be the progress that you all are used to.  And even for my low functioning friends, this really couldn't be considered progress to many of you.

No, my 9 year old son Kyle didn't start tying his shoe laces.  No, he didn't start communicating with his Ipad.  His point is still too crappy for that.  Forget about speech, we haven't made any real progress in that arena in years.  I kinda put the speech hopes in my back pocket for now.

No, the kinda progress that I'm talking about is probably pretty unique to Kyle's situation.  In fact you probably can't even call it progress.  Maybe you can call it maturity?  Or maybe he just isn't as destructive and compulsive as he once was.

This all dawned on me a few days ago when I was in our downstairs bathroom.  And I noticed that a bottle of hand-soap was out on the sink.  And my first reaction was to put it away and to scold the wife ("Someone left the hand-soap out...") in an accusatory tone.

But then I realized that its been out for a couple of days now...maybe even a week.




And that is huge because Kyle didn't eat any.  Kyle used to eat/drink the bottles of hand-soap if we left them out.  So our bathrooms, our downstairs bathroom especially cuz that one he has independent access to, had become barren of all soaps, and stuff in the medicine cabinets, etc.

Then when I thought about the hand-soap, all the other signs of progress came to me.

Look, we have toilet paper out in the bathroom, where it's supposed to be!  Kyle used to unroll it and rip it into little pieces obsessively.

And look we still have 2 cordless phones lying around in the living room!  And they still work!  The batteries are still in and the backs are still on and not all duct taped into place!

And all our remote controls are still intact!  They still have batteries in them and are not duct taped either!

The phones & remotes used to look like this...



And now that I think about it... he doesn't really spit, or play with his saliva anymore.  That was the grossest "stim" that my son used to have.  Taking some saliva from his mouth and gently placing it with his thumb and index finger onto different surfaces around the house.  There used to be little disgusting puddles everywhere!

And he doesn't do something else gross that he used to do.  He doesn't backwash into his bottle of water anymore.  You could always tell which one was the king's cuz it was cloudy with bits of food in it.  That is gone!

So can all that be called "progress"?  Or is it a sign of "maturity"?  Or is "Klonopin" just a miracle drug and it should get all the credit, and if we ever take him off of it (god forbid) all this progress will regress?

Who the F knows?

All I know is, this is the type of progress that happens in our house.  The kind that creeps up on you while you are dealing with some other crisis, and then it jumps out at you and you're like, "hey my kid isn't as destructive or as gross or as obsessive as he used to be!"

That's not the type of progress that I signed up for... but it's the type of progress that we've got right now.  So I guess it's worth noting and somewhat celebrating.

THE END!

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




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Saturday, October 13, 2012

Who I'm Voting For For President & Why...(spoiler alert: it all has to do with autism)


I've been avoiding writing anything political on my page and blog since the beginning. I know politics can be polarizing and I want all people to feel welcome here.

But I've been thinking about writing a post about my presidential choice for a long time now and today's the day.

Here goes.

As you may know, we are a middle class family who live in the suburbs outside of NYC. A family of three. Me, my wife, a stay at home mom, and my severely autistic, non-verbal 9 year old son.

And with all the stuff going on in the world, war, the deficit, abortion, foreign policy, gay marriage, I care about only one thing: me and my family. I am completely selfish. I'm looking for the candidate that's going to help me and my situation the most. The rest of you can worry about yourselves, but I'm looking out for nĂºmero uno, me.

And the candidate that I feel is going to best help me and my situation and my autistic son is President Barack Obama.

Reagan ran on the idea "are you better off than you were 4 years ago?" And while many people may answer that question no, I can answer that question, a resounding YES.

My salary has stayed the same, my income taxes went down a little, my real estate taxes went up, but during this stretch my autistic son qualified for Medicaid supplemental insurance which has significantly lowered my out of pocket medical costs. Should Obama get the credit for this? Maybe not, but the funds seemed to open up while he was in office. And I fear that this will get cut drastically under a Romney administration.

We qualified for some respite services during these past 4 years and currently get 6 hours a week. Should Obama get the credit? Maybe not, but I fear that this may (will) be cut drastically under a Romney administration.

Now some might say why should you even qualify for these services? You're middle class! That's the kind of waste that Romey is trying to cut! To you I say "worry about yourself." but I also say, hey I live outside of NYC and I pay some of the highest taxes in the nation and I got no problems with that, but I'm going to take advantage of all the programs that are open and available to me. I'll take higher taxes and more programs over tax cuts and fending for oneself. I guess that's kinda socialist, huh? I guess so...

My son goes to several after school/ weekend special needs programs that are partially supplemented by grants from the government. This doesn't make the programs free for the parents, but it definitely makes them a lot more affordable. My tax dollars at work.

And let's get into Obamacare, which is really called the Patient Protection and Affordable Care Act. How will that help me? How will it help kids with autism? And I also hear what has Obama done for autism? Well dive into Obamacare!

----

The below is taken from the US Health & Human Services website at http://www.hhs.gov/autism/factsheet_autism_support.html

--Job-based and new individual health insurance plans are no longer allowed to deny, limit, or exclude coverage to any child under age 19 based on a pre-existing condition, including children on the autism spectrum. Starting in 2014, these protections will be extended to Americans of all ages. 
--New health insurance plans or insurance policies must cover preventive services without cost-sharing, including autism screening for children at 18 and 24 months.
Insurance companies will no longer be able to impose lifetime dollar limits on coverage. Prior to the Affordable Care Act, many plans set a dollar limit on what they would spend for covered benefits during the time individuals were enrolled in the plan, leaving individuals on the autism spectrum and their families to pay the cost of all care exceeding that limit. The law also restricts annual dollar limits and will prohibit them for new plans altogether starting in 2014. 
--Young adults can remain covered under their parents’ insurance up to the age of 26. Already, 2.5 million more young people have been insured through this provision of the new law. For a young adult with autism or related conditions and their family, that means more flexibility, more options and greater piece of mind. 
--Starting in 2014, individuals on the autism spectrum and families of children on the autism spectrum will have expanded access to affordable insurance options through new Affordable Insurance Exchanges and improvements in Medicaid. 
--Also starting in 2014, new health plans sold in the individual and small group markets, including Exchanges, will cover “essential health benefits” to help make sure that health insurance is comprehensive. Health insurers will also have annual out-of-pocket limits to protect families’ incomes against the high cost of health care services.

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All these things sound vitally important to me and my little autism family.

How will Obamacare affect the deficit? Will it increase insurance rates for healthy people? Is Obamacare constitutional? Is it Socialist?

My answer to all of these questions is I DON'T CARE! I don't care if it makes us have a bigger deficit and owe China more money. I don't care if it raises others insurance rates. I don't care if it's unconstitutional or socialist. As long as it helps my son, I don't care how it affects the rest of y'all.

Yes I'm that selfish.

Now Romney hasn't mentioned much about autism, at least not that I could easily find. But he has talked about tax cuts, repealing Obamacare, rejiggering the Medicaid program, and cutting unnecessary programs and grants. All those sound scary to me and my selfish agenda. Are some of my sons after school special needs programs unnecessary? Should the government be cutting the grants to his sports & swim programs? Is that unnecessary? Depends who you talk to. But in my world they are vitally important and I would be more affected by them being cut than I would with military spending being cut.

And I know you're thinking that a small city program has nothing to do with who the president is. But in my humble opinion... If things get cut drastically on the federal level, and there's less $$ passed down to the states for programs then it will slowly trickle down and affect my life and my son's life.

Now I come from a long line of conservatism. I grew up in a Republican household. All my extended family were Republican. And I was quite conservative straight through til I graduated college. I slowly became more liberal throughout my 20s and them when my son was born in 2002 and when he was diagnosed with autism in 2004 I started my own party. The Me Party. I look out for any candidate that's going to help me.

I come from an Italian background and I come from a long line of Republicans. Some of my relatives probably wouldn't accept public assistance (like unemployment or food stamps) if they qualified for it. They wouldn't accept it out of pride and/or a sense of "I don't need anyone's help. I can get out of this down period on my own"

I am the complete opposite of that. I will take any and all assistance that's offered to me. Not only will I take it I will go out of my way to seek it out. Sometimes there are programs out there that have money or services to offer but you need to do your homework to find them. Go find them before they get cut!

So I will be voting on November 6th to re-elect President Obama. He has done right by me.

And I expect to get a ton of comments explaining about why I am wrong about this or that. And there will be lots of facts and figures and links as to why Romney would be a better choice.

But I will readily admit that I am not educated on all the issues or the candidates stance on all the issues. I have no time and no interest in getting more educated. I really don't care that much. I don't have the time and I really don't like politics that much. Again I'm voting for my own selfish reasons and I encourage you all to do the same.

And I'm not naive. I know politics are evil and I know our government is broken and needs to be totally rebuilt from the ground up.

And I have friends that were huge supporters of Ron Paul and now the libertarian 3rd party Gary Johnson. These candidates want to radically change the way our government works. And I can totally see the appeal in that because I can see how our government is corrupt and evil. And I have some libertarian friends who say there's really not that much difference between Romney & Obama. And if you look closely I can see their point. And I can see the appeal of tearing the system down and starting from scratch.

But it's not realistic in 2012. And I feel that I can't afford to throw away my vote right now.

So to my libertariam friends, while there might not be huge differences between Romney & Obama I feel Obama has more to offer me and my wife and my autistic son in 2012. And that's how I'm voting.

I'm voting to reelect Barack Obama. 4 more years...

(wow I had so much more I wanted to say about this and I forgot a ton. I may revise this over the next few weeks leading up to Election Day so look for a revision or two)


Thursday, October 11, 2012

Kyle Still In The Hospital With Seizures... A Thursday Update

So if you've been reading my Autism Daddy Facebook Page you'll know that Kyle was in the hospital from Wednesday afternoon for a 24 hour EEG.  He was falling a lot the past few weeks.  Mostly backwards, at least once a day.  And then at school on Tuesday it happened 4 times.  We all thought it was a possible side effect from the anti-seizure med that he is currently on, Trileptal.  

I was SHOCKED when the wife told me Tuesday night that they wanted us in for a 24 Hour EEG on Wednesday afternoon because of these falls.  But we went, and everything went great.  We were able to get all the leads on Kyle thru a combination of Benadryl and wrapping /taping him up in a sheet so his hands were out of play.  Sounds cruel?  The king loved it.  He always loved being swaddled as a baby and that's what this must've felt like.  

They put all the leads and glue on his head.  He squirmed quite a bit, the glue smells bad, the glue drying machine sounds funny, he tried to bite once in a while, but all in all he did great!  

And at 4pm yesterday we began the 24 Hour EEG.  It wasn't easy for Kyle or for mom & dad, but we took shifts hanging out with him, giving him tons of snacks, letting him watch his favorite videos and he did pretty ok.  No meltdowns / tantrums.  Yes he tried to pull the mummy hat off tons of times, but he tolerated it all.

We made it til about 11am today when one of the EEG technicians came in and said "we have enough" and started removing everything.  The wife and I thought great!  We will hear from the doctors, they'll probably discharge us, tweak his meds and we will be on our way.

WRONG!

The falling/ dropping are from something call atonic seizures (also called "drop seizures", that's a perfect name for them).  And that's what Kyle was having.  And this might be a form of something called "Lennox-Gastaut Syndrome" which I'm kinda afraid to start googling.

But long story short.  They want us off the trileptal asap and on a new med called depakote asap.  They want this transition from one drug to the other to happen within a few days.  And because of that they want Kyle in the hospital overnight tonight, and maybe even overnight tomorrow night, so they can monitor how he's doing on the new med.  

Because they are switching meds so quickly and swiftly getting up to a regular dose of the depakote they said that Kyle could be really tired & "drunk" for a few days.  I said we can deal with tired and drunk at home, but they convinced us to at least stay tonight.  We will see what tomorrow brings, but it appears that we may be here til Saturday.

Meanwhile Kyle is Kyle.  Munching on popcorn, stomping around the room (now that he is detached from the EEG) wondering what all this fuss is about.

I guess none of this is too scary (yet?) but the wife and I were SHOCKED when we were told that we should stay for a day or two.   It really put us in a funk today..

I guess this blip on the radar is getting a wee bit bigger....

:-(

Thursday, October 4, 2012

The High Wire Act That's Been Our Lives For The Past Month & A Half...




I've been relatively quiet on my blog and Facebook Page the past few months.  But I figure it's time to update y'all on what's been going on.  No really big things good or bad, but alot of little bad things that can add up to drive me (and the wife) crazy.  Ok, where should I start.


SEIZURES & ANTI SEIZURE MEDS & THORAZINE
So as you all know by now, Kyle starting having seizures in mid-May and went on the drug trileptal immediately after.  All was fine for about two months, and then in mid-August he started having some dizzy clumsy spells.  Were they side effects of the med or mini seizures?  For a few weeks we decreased his trileptal based on a neurologist's advice.  After a few more weeks of dizzy/ clumsy spells the neurologist asked us to slowly increase his dose of trileptal.  So far so good?  Kinda sorta.  Also, any increase in Trileptal comes with a drug test cuz a common side effect of the drug is hyponatremia.  So we have to check the sodium level in his blood after 2 weeks at each new dosage.  Fun stuff.

Also because of his dizziness/ clumsiness, we asked Kyle's psychopharmacologist if he should come off his tiny dose of Thorazine.  Remember Kyle takes klonopin & Thorazine due to his "summer of rage" in 2011 and he's been great on them since September 2011.  But stupid me, I googled Thorazine and seizures and saw that Thorazine can lower the seizure threshold in people who are susceptible to getting seizures.  So I asked his dr if he should come off of it, and in my words "I'm not sure exactly what the Thorazine did for him anyway"

Well, we don't have the summer of rage back, but at times we've got a much more hyper kid, who has a lot of his ADD / ADHD tendencies back.  Boy, I guess the Thorazine was helping him.  Duh!  But on paper it made sense taking him off (I keep telling myself).


HERNIA SURGERY
Against all of this was our mid August discovery of a nice sized lump on Kyle's groin area.  Pediatrician & urologist determined it was an Inguinal hernia.  They said Kyle's not in any pain and it didn't need immediate surgery, but they scheduled surgery for September 19th.  The whole time Kyle is showing no signs of discomfort.  And as the weeks go by the hernia comes out more and then a few days before the surgery date, it totally disappears.  I'm thinking "maybe he doesn't need surgery" and reading on the web that surgeons will always choose surgery but it's not always necessary.  So on the day of the surgery, Wednesday September 19, I ask the surgeon if he needs the surgery and of course he talks me into it and everything he said made total sense...

Surgery was quick and easy, Kyle came out of it nice and we went home later that afternoon.  Kyle seemed himself, no problems.  He had us fooled.  The next day when the anesthesia wore off he was in a lot of pain.  A lot of moaning.  Wife gave him the Tylenol with codeine they prescribed us "just in case" and he needed it...    But we think that the codeine made him constipated.  And Kyle was a kid that used to have major stomach issues/ pain and that wasn't good.  Basically after the surgery and codeine he wasn't himself for quite awhile.  Had some mini-meltdowns, some biting, again some of the old "summer of rage" behaviors.

Every time one of these behaviors creeps up it scares the hell out of me.  It reminds me of the way things used to be.  I put that stuff behind me, and I actually forget some of the behaviors and when they come back, it's like total recall to when we needed to take all the toys out of his room just to keep him safe.  Back in the summer of '11 we were like 1-2 bad meltdowns away from his bedroom having no furniture and just a mattress on the floor.  This is before the miracle of klonopin & Thorazine.  Anyway, so some of those behaviors are back.  Not the violent side of them, but they hyperness and the biting, etc.  And it makes me afraid that we are heading there again.

Long story short, hernia surgery was successful.  Caused him more discomfort than we expected.  With that came some constipation, and a return of some old/bad behaviors.  And now the discomfort is gone (we think) and the constipation is gone (we think), but of course some of the bad behaviors have remained.


LACK OF APPETITE/ FEEDING ISSUES
He's had a horrible appetite for YEARS now.  (I wrote about it in June 2011 that you can read HERE).   In a sick way, I keep wanting someone to prescribe him a med that has weight gain as a side effect so we can put some pounds on this kid.  I wrote about his feeding problems a long time ago.  You can read that HERE.  And everything I wrote there still pretty much applies today.  I come home from work most nights to find Kyle strapped to his seat in the dining room with his Ipad blasting an episode of Sesame and a smorgasbord of choices in front of him and the wife frustrated that he won't eat anything.  She then proceeds to stab a piece of hot dog with his fork and then prompt him to pick it up and eat it.  This is pretty much bite after bite after bite until the wife feels like he's eaten a decent amount or he frustrates the hell out of her enough that she unstraps him and sends him back to the playroom.  It's when I see her physically fork-feeding him that I start to lose it.  I hate feeding him and I will not fork feed a 9 year old.  I'll stab the hot dog, I'll prompt him to pick up the fork, but I won't fork feed him.

The feeding issues are extremely frustrating.  I'm always of the mind of "he's not going to starve himself.  he'll eat when he's really hungry.  he has to.  it's a human survival instinct."  But that's not necessarily true with the king.  Sometimes he'll be having a mini-meltdown and I'll say "when was the last time he ate anything substantial?"  Last week I was driving him to school and he was having a mini-meltdown and I figured it was hunger based.  There was a Tupperware filled with cheerios right next to him in the back seat (left over from the last time I drove him to school the week before :-)  And I said "dude eat some cheerios!"  Nothing.  He's just acting all mad and ornery.  I reach back (while I'm driving) and grab a handful of cheerios and put them next to him and say "eat some cheerios".  He pushes my hand away.  Then I say with a stern voice "Eat some cheerios!"  He very delicately takes two o's, nibbles them down, and then that opens up the floodgates and he seems to realize that he's starving and he proceeds to eat the rest of the o's in the Tupperware.  Meltdown over, kid happy, enters school with a smile on his face.  WTF??

The feeding thing is CRAZY and every once in awhile he goes thru a day or two where he seems like he doesn't like cheerios or popcorn and the wife and I get freaked out.  Cuz if he loses his love of those two foods we will be screwed.  Cheerios & popcorn have probably kept him alive these past 2 years!  :-)  I'm only slightly kidding.


HOLDING BREATH / BREATHING ISSUES
This has been going on for years.  Kyle holds his breath all day long and in any situation (happy, sad, being challenged, relaxing, by himself, with people, whatever).  It got a bit crazy last November and they kicked him out of school because of it.  They were afraid that he was going to pass out and/or cause major medical damage to himself.  I wrote a bit about the breath holding issues HERE and the school kicking him out HERE.  Since November 2011 he's been seeing a behavior therapist who's been working on a behavior modification plan...

You know what?  That's a whole other blog post.  I'm gonna save the Holding Breath / Behavior Modification plan for a later blog post.  There's just way too much to talk about there.  11 months worth of stuff.  So stay tuned about that.

I'm gonna end it here.  So that's what's been going on with us the past month and a half or so.  Nothing horrible, but just a lot of little things that add up to make life a wee bit stressful.

Anyway, there you go.  The end.

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