Now Reading: The High Wire Act That’s Been Our Lives For The Past Month & A Half…

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.

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).

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.

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.

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.

Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).

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21 People Replies to “The High Wire Act That’s Been Our Lives For The Past Month & A Half…”

  1. Anonymous

    Hey! I came across your page through facebook and think its amazing what you are doing ignore the trolls that try to bring you down altho having a autistic child you probably have allready learned to switch off from these fools… i have just had my 2 and a half year olds diagnosis today and he also has severe autisim and with a 9 month old baby as well it is really hard… but i have strength every time i look at my two children and realise that iam their voice and they need me 2 stand up and fight for them it is what gets me through the hard times with them and reading pages like what you have produced makes me realise that there is nothing wrong with my 2 year old he is just extra special in his special way and everyday is a journey for all of us….. much love from the uk! Xxx p.s dont stop what you are doin

  2. Anonymous

    Anonymous is a total douche. Now that is somebody that does not deserve to breathe. Keep on keepin on AD. Much love to you and your family.

  3. Anonymous

    You are just mad because your worst fears on what people are really thinking radiates from my comment!!! Yes, we are really thinking bad things about you and wondering why you were allowed to reproduce! Oh i'm sure your kids teacher never thinks what i said. I'm sure the teacher would be the first person to tell your kit to get the f out of their school, so he can concentrate on the 'gifted kids'. Yours is just a waste of resources. ohhhhhh it is the truth and you know it!

  4. Anonymous

    Sorry for the above, meant "disorder"

  5. Anonymous

    Mr. Anonymous most likely has a personality disordered coupled with a chemical imbalance. I would bet he was either abused or is currently an abuser. His self hatred pours out of his words. Truth is, his comments might upset us for a few minutes, hours, or maybe even a day, but that is nothing compared to the feelings of emptiness, anger, loneliness and self loathing that he experiences every single day of his pathetic life. His attempts at displacing those negative feelings on to you and Kyle are readily transparent. Don't give him any more energy. There's only two people who can do anything for him, that's a psychotherapist and a psychiatrist.

    And Linda, your comments say more about you then anyone else. Please educate yourself quickly.

    Autism Daddy, you are the bomb. I LOVE and RESPECT your honesty. I am forever grateful to you because you have helped me through some dark times. Thank you!!!!

  6. I'm almost afraid to comment given Mr Anonymous Creep above. So glad to have found your blog and love the sharing of real things, with the real feelings involved. Also love seeing a dad's perspective – mostly I'm in touch with other moms, the occasional dads around (not saying they're not involved – just not at my support group meetings, or running into me at school, etc.). So thank you! My own efforts to blend real life, humor and just getting by while raising a family drenched in autism stress is at

  7. Anonymous

    I'm so sorry that people like 'Anonymous' have nothing better to do than harass and torment people they've never met.
    I too have a wonderful little man on the spectrum.
    Can't believe how insensitive and downright depraved some people can be.
    What the hell is that guy doing reading your blog anyway?!?

  8. Anonymous

    Humans like you shouldn't be allowed to procreate. Get some better genes, a better woman, or just how bout', keep your mistake in your pants…

    1. Anonymous

      What a monster you are! Dont ever,ever, ever come across this page spreading your hate!!! Autism Daddy you and your family are inspiration for so many people out here! I look forward to hearing from you about you and the Kings Adventures and just want to let you know we are all wishing you well. All the best and lots of love!

    2. Once again, fuck you and the hole you crawled out of.

      How the fuck did you find my page and why the fuck are you reading it?

      Get a life!!

  9. Anonymous

    Will you quit f***ing writing about your stupid kid. If we were in Darwinian times, he would have been left in a ditch, and of course he wouldn't be able to get himself out. ya he has this ya he has that. How about get your own life, instead of talking about some useless thing kept alive by you.

    1. Fuck you douchebag!! Why are you reading my stuff if it bothers you so much. What a weasel trolling my page and making fun of my disabled son. Your mom must be extremely proud of you. I'm being sarcastic you know what sarcastic means right?

  10. Anonymous



  11. Anonymous

    I just want to add to Linda, please be aware of how you say things. No child suffering with Autism is "that autistic" that they would not feel the loss of their stable routine at home and miss there parents dearly. All children with Autism love their family greatly and would never be unconcerned at a parent suddenly not being around. Children with autism have huge hearts and while you struggle through the hard times you are sometimes rewarded with the small window into their world and how much they love and care for the people around them.

  12. linda

    Don't know if you want to consider it but if his behaviors excalate maybe you will want to consider putting him in a special juvenile institute where they help with behaviors .If he is not that concerned about you when you are gone, or is that autistic then he doesn't care about who cares about him then maybe placement might be an option for him .

  13. I make milk shakes for my daughter with whey protein mix in the and she gets her protein and stuff from that or a smoothie……she does not even know I put it in there it is a powder and they have chocolate or vanilla. I use vanilla cause you can mix it with any thing and it also helps fatten them up and helps a little with weight gain

  14. Glad to get the update and things are mellowing down some. The bit about being kicked out of school for breath holding is ridiculous!! As a parent of a breath holder it used to drive me crazy when she did it but I knew that when she passed out, she would start breathing and problem solved!!

  15. Couple things. Narcotics always have the potential to constipate. Next time be aware and proactive. Also, some surgeons are leaning more towards Ibuprofen (I got it after my c-section last time and was like WTF? But it worked.)
    My kids are the same way. Internal events are a mystery. Do I need to pee? Am I hungry? All I know are things are bad. It's damn hard to stay on top of what and when Nathan last ate. And being severely affected doesn't help. But even my Aspie can't figure out until the last second (or worse) if he needs to pee and will refuse all the way to the toilet where he suddenly HAS to go a bunch. And you can connect a scrape to 'hurt' but how do you connect the hunger feeling?
    I know the PTSD. Last winter was our 'winter of rage.' And now, with any behavior, we're like OMG! you figure out how to get that to stop, let me know 🙁
    Meds are a constant crapshoot. Try not to beat yourself up about them. His needs change. His new antiepileptic might have done the trick for the behaviors, you didn't know until you tried. Unfortunately, the trying carries risks. But you don't want to wind up on 20 meds just because you never tried him off.
    You're doing a good job. The best anyone can. Keep moving. Keep trying.

    1. A lot of autistic people who already have sensory issues will have a hard time understanding what that 'feeling' is when they have a full bladder or other. It's a sensory discrimination issue.

    2. But even my Aspie can't figure out until the last second (or worse) if he needs to pee and will refuse all the way to the toilet where he suddenly HAS to go a bunch.

      I thought mine was the only one who does this. It is so frustrating because the kid is 12 and we KNOW that he's got to go. And he is refusing the entire time.

  16. Sounds like one heck of a month! Kaden is such a picky eater, we worry about him a lot because he goes days and days just eating the bare minimum. And then there are other days where we can't keep enough food in front of him because he eats, eats and eats. I haven't tried the medicine route yet, but he has violent tendencies. We are hoping that that will get under control with his ABA therapy. Just the other day he broke several spindles off of the stairs just because his brother wouldn't let him rub his chin and smell his face. These are 2 things Kaden does when he is nervous about a new idea, a change in the schedule, if he is happy, angry, frustrated. The violence towards himself and the stairs lasted 2 hours. It was exhausting. I hope this next month is better for your family.