Thursday, June 16, 2011

The Hits Just Keep On Coming.... :-(

I swear that I'll have some good Kyle news to share with you all soon...but... not today...  :-(

Remember a few weeks back when I wrote that Kyle almost passed out at school because he likes to hold his breath.

Well they collected some data at school and under 3 different scenarios Kyle held his breath over 300 times in a half hour!

Everybody is very freaked out about this... No ones ever heard of it before... And no one is sure what to do...

We gave that info to Kyle's pediatrician and DAN doctor...

The first thing they recommended?  Getting our house tested for mold.

After that, going for an overnight sleep study.

After that, we'll probably be down another road of dr visits for other solutions.

And after countless hours and THOUSANDS of dollars, all the results will turn up fine / negative.   I HATE when results come back fine!  I want answers!

But  we'll probably have no answers and probably need to turn to drugs...?    :-(

Wednesday, June 15, 2011

Asking For Help .... What Constitutes An Emergency?



https://www.facebook.com/note.php?note_id=226735867354221
You know how they always say, you gotta know when to ask for help... Well what happens when you ask and nobody responds?

I wrote in a previous note about how the wife and I are selfish and like to go out alot and we rely on family to watch Kyle. You can read that note at
https://www.facebook.com/notes.php?drafts&id=163509233676885#!/note.php?note_id=216005818427226 However, when I said that we rely on family to watch Kyle, what that really means is that 85% of the time we're relying on young family members (niece, 18 & cousin, 24) whom we would pay (and pay VERY well in my opinion). Both of them are now too busy to watch Kyle, hence this note.

The reason we went the route of paying young family is that this way the wife and I wouldn't have to ask our brothers & sisters to watch Kyle because in the past they haven't always stepped up as much as we'd like...

Now don't get me wrong we have an AMAZING family. They accept Kyle. They love him, They get him.

They almost all live within a 60minute radius of us (most live in a 10 minute radius) and we see them all the time. Holidays, birthdays, summer BBQs, etc. All our brothers & sisters (both the wife's and mine) and all our parents are completely in our lives, and we love them dearly.

They say they will always be there for us. In an emergency they will drop everything and be there for us & for Kyle.

But what constitutes an emergency to us, doesn't always seem like an emergency to them.

When we've just had a typical week of dr appointments, therapy sessions, arguments with the insurance company, arguments with the school district, and Kyle meltdowns & tantrums we could use a night out. By the end of some weeks, it IS an EMERGENCY. We need to take a break from Kyle and perhaps more importantly he could use a break from us.

But when we ask our sibs to watch Kyle, we don't drag them down into our muck. We'll just say, "hey can you watch Kyle on Fri nite so we can do dinner & a movie" And we'll often hear back, "sorry Johnny has a softball game and Lucy has band rehearsals...but definitely another time... And I'll say "How about Saturday nite? Sunday?" and hear the same kinds of things..

We don't want to be a burden on our families. But I almost feel like we'd be better off if they saw us have a complete mental breakdown or panic attack right in front of them for them to understand that any typical week for us when you are down in the trenches 24/7 can be an emergency situation.

I think because the wife and I try to plan fun things (Foo Fighters concert, broadway play, dinner & a movie) that our siblings take it as that's just your typical parents wanting to get out for the night.

Also the few times they do watch Kyle, they see what we present to them... I think because the wife can throw on makeup and look amazing when we go out... And because we can talk & laugh with them about the week's crazy Kyle events, they see... A happy couple ready for a night out... And they don't see it as helping us out in an emergency....
So maybe once or twice a year, when the shit has really hit the fan and when we’ve been turned down by our sibs a few times, I'll secretly write an email behind the wife's back telling them all the things that are going on with us & Kyle and explain how stressed out we are, and how we really NEED them to step up. And things get better.... for a few weeks.

You would think that after several emails like that ASKING FOR HELP maybe once, without even us asking, maybe one of them would call us up and say "we're free tonight, why don’t we watch Kyle and you guys go out". Never happens. Even after emails like these, we still have to make the first move and throw out some possible dates.

And again the fact that we have a GREAT time when we go out & come home happy & a little tipsy and tell our sibs what a great time we had... it doesn't feel like they helped us out in an emergency, but most times they do...

And let me take a step back and say that while I've written alot of things about Kyle on this page about how hard he is to handle lately. But he's really not that bad. I got to write a separate note about him soon. He is such a sweet kid with a smile that can light up a room and warm your heart. (more on that later :-)
So, he's really not that bad to "baby sit" at our house. I mean most gigs watching Kyle would start at 7pm at the earliest and he's asleep (thanks to melatonin) by 9pm and he sleeps thru the nite.

So we are really, most of the time, asking our family to watch Kyle for 2 hours, 3 tops. Feed him dinner, read him some books, let him watch tv, follow him around, take him to the potty, wipe his butt, and put him to sleep.

The rest of the nite from 9pm on, they are free to sit on my couch, watch my tv, and eat my food.
Maybe that's part of the problem, right there. Maybe they watch Kyle for 2 hours while he's awake and think, what's the big deal? Why are so they stressed out?


I don't know if that's what they're thinking... I'm just guessing at all of this.

All I know is that I wrote another one of those emails last night to our siblings. Said we need to get out once a week, and once again, put the ball in their court. We'll see what happens...

Now I know there will be people who read this who have NO support and believe me, I know that we may be luckier than alot of people. But again, I'll go back to the beginning. We are lucky (and smart) that we know when to ask for help, we are lucky to have the people in our lives who can help us... now we just need them to step up...

And if you are a FB Friend of mine and you also know me personally. I believe there are 39 of you. :-) Please do not report back to my wife or any of the people that I may be talking about in this note. I don't want any of this to get back to any of them. This is just my outlet to write shit down and work things out in my head.

Thanks!

That is all...

Over and out...

Sunday, June 12, 2011

Biomedical / DAN Dr Treatments We Tried On Kyle With No Success... in no particular order...



(originally written & published on June 12, 2011)


Many have asked, so here is a list of things we've tried with Kyle with little or no success over the past 4 years... This is all I remember off the top of my head. If I think of any others, I will add them and repost this note... All of these were tried based on the recommendation of a DAN Doctor

---GFCF DIET for almost a year and a half.

--- HBOT, (Hyperbaric Oxygen Chamber)... rented one, had it in my house for a month. Kyle and I would go in there for a few hours each night. He would fall asleep in there. I felt no different. Kyle didn't appear to get anything out of it. Cost me over $2k

--Treated him for yeast with the diet of antifungals, Nystatin, probiotics and alot of other supplements in this category.

--Vitamin B12 injections

-- Treated him as if he had Lyme diease with a round of Valtrex & other supplements...

-- Secretin injections.

-- Prescription Meds we've tried based on the recommendation of a DAN Doctor include...
Ability.
Aricept
Ritalin
Intuniv/ Tenex


--Things that are in my cabinet that I can't remember what they are for or what they were supposed to help with...
Folic acid
Oil of oregano
Charcoal capsules


That's all I can think of right now. The only thing that ever truly worked was good ol Melatonin for sleep and good ol' Senokot for helping loosen stools and making him more regular. Everything else did little... or nothing... or helped a bit but came with a new side effect that we thought wasn't worth it... or made things worse.

Right now our biggest challenge is tackling Kyle's ADD & ADHD. He is so hyper, stimmy, cant sit still that we feel it gets in the way of him making ANY progress / learning. If we can get some of that out of the way... without making him a zombie / stripping his personality maybe we can see some real progress for the first time in several years...

That being said, this may be controversial, but right now I'd try another prescription med (that didn't have decreased appetite as a possible side effect) over any new biomedical treatment or supplement. At least I know what to expect and my insurance covers it (minus a copay) vs spending $30+ on bottles of
NOSITOL ~4000 mg/day
5-HTP 150 mg/day
TAURINE 2000 mg/day
GABA 2000 mg/day
ZEN (L-Theanine) 400 mg/day
which were the next 5 things my DAN doctor was suggesting we try. One at a time for 2 weeks....

Anyway, that's my note for today. I will add more things when I remember them.

Thanks,

Autism Daddy

ADDED 12/12/11
Listen guys.  We went to 2 of the most well respected Dan doctors in the US. They both do speaking engagements around the country and at Dan conferences.   So we went by what these 2 experts suggested.

Also as I said in my note about what weve tried. Those were listed "in no particular order" and were stretched out over a 5 year period.

We tried each thing by itself in the order that they suggested for the length they suggested.

So I'm  not going to start second guessing the doctors. That'll drive me even crazier!!!  ----------------------------------



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!!



:-)

062514

Wednesday, June 8, 2011

The Story Of Kyle's Major Regression.... Autism On Top Of Autism?










(originally written & published on June 8, 2011)


In several of my previous Facebook notes I've alluded to the fact that Kyle had a late, large, unusual regression. Several people have asked for more details and asked if I had any clues as to what triggered the regression...

So here goes. But please note that this is the short version of the story. The long version has ALOT more details and is ALOT more painful for me to tell...

I honestly dont know what caused his regression... Or if anything caused it. And it wasn't like your typical autism regression where your kid is developing normally has some words and then regressed at 18-24 months into a kid with autism.

We already had a kid with autism. Kyle was diagnosed at 18 months with mild PDD-NOS he was non-verbal, walking on his toes, flapping, etc, but once he got into Early Intervention he was making HUGE strides and MASSIVE progress. Kyle was an ABA machine.




And between 18mos - 36mos he made a TON of progress. Knew all his colors, knew all his shapes, knew all his letters & numbers (1-100!), could identify half the states on a map... All this by pointing. He was even good at pointing! He was also starting to approximate words with prompting "Cheer--- eee---ooos" ... And he was filling in the blanks on sayings...the cow goes ... "MOOO". And his receptive language was growing by leaps & bounds.

But SLOWLY between the ages of 3-5 it all went away and now we had a severely autistic kid who is constantly climbing, swinging, running, putting things in his mouth, spitting, etc.

It was like he had autism on top of his autism. I read about a severe form of autism called CDD (Childhood Disintegrative Disorder) and I thought maybe he had that on top of the autism...

Do I blame vaccines? Not really. Do I blame anything? I'm not sure, but between the ages of 3-5 is when we first started dabbling in biomedical treatments, first B12 injections, then the GFCF diet, then countless other things (that I'll detail in another FB note)

Could one of these "miracle" treatments have caused a regression? I don't know. As I said it was a VERY SLOW regression so there's not one thing I can point to, but it just adds to the GUILT to think that maybe one of those things led to the regression. And it's why I'm not so gung ho on trying new biomedical treatnents as I used to be. Deep down inside I feel like we got burned there.

And we've pretty much given up on trying to figure out what caused it. We're just trying to move forward. But it still gnaws at me. Cuz when we see certain toys and certain books we remember what he used to do and what he was (is!) capable of.

I'll never forget being at the diner after our first Autism Speaks Walk in June of 2006 Kyle at 37 months looked at a page in his Brown Bear book and said UNPROMPTED, "Flamimgo"

Now he just rips that book up!!

Any ideas / solutions / theories? I'm all ears... :-)

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



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





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, June 5, 2011

THE AUTISM DADDY RELIGIOUS MANIFESTO...













(originally written & published on June 5, 2011)



I hope people don't take this the wrong way and before I say it I just want to say that all people are welcome on this page regardless of their backgrounds or beliefs. I want this autism page to be (for the most part) free from all the debates i see on alot of other autism pages about whether certain vaccines cause autism, whether Autism Speaks is good or evil, whether this treatment is better than that treatment (trust me we've tried them all), whether using meds on our kids is good or bad, etc, etc.

The reason for this post?  At least once a day on my AD page/blog somebody will write something to the effect of "God only gives special kids to special parents" or "God doesn't give you more than you can handle" or my favorite..."your son's autism is a gift from God"

I don't believe any of these statements.

One thing I think you should know about Autism Daddy is that I do not believe my son having autism is a gift from God, and that God only gives us what we can handle. Now again i don't want to lose people by saying this. Again you are ALL welcome here. If your religion makes the daily struggle of autism easier to take, God bless (no pun intended). I wish I had something to make the struggle a bit easier to take, so I envy you folks there.

But I was raised Catholic. Lost my taste for it years back. I guess I believe that there's an all powerful being out there. But I find it hard to fathom why any God would intentionally give children a disability. I'm in this autism world over 6 years now and not a day goes by when I don't see a father with a typical son and I think what if and I HURT. I thought it would get easier as the years pass, and yet it didn't.

So I didn't sign up for this and I refuse to believe that someone or something CHOSE me and my wife to raise a son with autism and it's a gift. I mean I love my son. After 3 miscarriages HE was a gift. But the autism? That's some CRAPPY gift. That's a gift I'd like to return.

I also hate when people say "I don't know how you guys do it. I wouldn't be able to do it." I mean c'mon the wife and I are no saints, we're just doing what anybody else would do. We are raising our kid the best we can. Nothing more, nothing less.

We are not even close to perfect. We yell at Kyle when we know he can't always help what he's doing wrong. We curse. Getting ready and getting out of the house on a typical school day can be EXCRUCIATING.










Also you should know that we are not what the wife calls "uber autism moms & dads". We have done alot of the biomedical stuff and kinda got burned by a few (made Kyle worse?) but we don't keep food diaries and track/log his moods. We don't always engage him as much as we should. There's a point of every day where the wife and/or I are exhausted and we just leave Kyle alone in his playroom to destroy it while we spend 30-60 minutes vegging out watching tv or playing with the iPad.

We know it's wrong. We know that's time we could be reading him a book or engaging him in an activity. And we know keeping a food diary or a history of all the supplements & meds we've tried would be a smart thing to do... but we haven't yet.

So there you go, proof that we are not even close to perfect. Maybe we are TOO selfish. (I wrote another blog post about how selfish we are that you can read HERE :-).

But getting back to the religion thing...
I don't think Kyle having autism is a gift from God but I envy you if your religion makes autism easier to take. The wife and I used to kid about getting into Scientology because they all seem so happy. (See Tom Cruise on Oprah's couch). And maybe Scientology would make the day to day autism stuff easier to swallow.

I think we are both open to having religion back in our lives, any religion, something spiritual, but we haven't found the right one yet.

So again, I hope I don't lose anybody. And also please remember that I am looking at severe autism, the non verbal, head banging, playing with saliva variety. If your religious beliefs make the day to day autism easier to take, good for you. You know what makes my day to day autism easier to take? TV, running, my wife, my dog and a little white pill I started taking a year and a half ago (I wrote about my magic pill in another post that you can read HERE :-).

So for now, those are my religions.

THE END :-)

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





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



Friday, June 3, 2011

It's getting crazy up in here... Eating / Feeding Issues :-(



It's getting crazy up in here. I briefly mentioned it in one of my other notes, but Kyle's had some major eating / feeding issues the past year or so.

His appetite has gone down and there was a 6 month stretch where he lost 5-6 pounds. Even with that weight loss he was still in the normal range for a boy his age & height. But doctors dont like it when a 7-8 year old loses 10% of his body weight.

We have no definitive reason for the loss of appetite. It could be a combination of some meds that he was on (that normally increase appetite but nothing is normal about Kyle :-)... or it could be the fact that he went thru a stretch where he breathed heavy & fast ALL DAY (almost like hyperventilating) and he could have been burning alot of calories doing this.

Whatever the reason, he lost weight and the wife took it upon herself to fatten him up. And she did, she got those 5-6 pounds back, but what she had to do and now still has to do is feed him like a little baby. Strapped into a seat (meant for a 4-5 year old). Forkful by forkful. Put a piece of chicken on the fork and either prompt him to pick up the fork, or literally feed him.

This is for almost EVERY meal. Unless it's popcorn or cheerios (which he eats like Cookie Monster as you can see from my profile pic) he needs to be fed.

And it drives the wife crazy and the two of them are at each others throats sometimes when I get home from work. Kyle grabbing my hand and "asking" to be unstrapped....but we check his school lunch and he barely ate that so he's gotta stay strapped and eat some more...

I kinda refuse to feed him like a baby. I think it's ridiculous. No kid will literally starve themselves right? And the wife will remind me that he did lose 6 pounds in just a few months.

If it was up to me, I'd feed him popcorn and cheerios every day and just give him a good multivitamin and to make up for the rest.

The feeding thing has really gotten crazy and I kinda feel that it's putting a rift in Kyle's relationship with his mom.

Currently my wife is just Kyle's chauffeur, maid, and cook. He gives her almost no attention or affection. Then I get home from work and Kyle is all over me, pulling at my neck, asking me to pick him up, planting a kiss on my forehead.

This is going to come out wrong and I know I'm in the wrong here...BUT... I think Kyle currently shows me more affection because I expect less out of him then the wife does and I ask less of him. I'll put his socks and sneakers on instead of prompting and making a 10 minute lesson out of it. I'll unstrap him after only a few forkfuls of dinner and then make him a bag of popcorn at 830 at night before bedtime. So he LOVES me and the wife he barely tolerates.

I honestly don't know the solution is but something has gotta change with the whole eating / feeding situation and with the whole Kyle not giving his mom attention because it's really getting my wife down.

And because I know a few of you are thinking it... :-) We tried the GFCF thing years back and didn't see much improvements. We may try it again in the future but we are fairly certain that this feeding issue is not a GFCF issue...

That's my story... Not necessarily looking for any solutions from any of you (but if you have them please send them)... just wanted to give you another window into our crazy world at the moment

Wednesday, June 1, 2011

One of our biggest regrets... and a question for all of you...



Most of the other autism families in our lives have multiple kids. Either they didn't know their kid was on the spectrum yet when they had more, or their kid with autism was their last one. And most of them have one severe kid and one mild kid... or one kid on the spectrum and the other not at all.

But they ALL seem more balanced than us. Our lives revolve around Kyle and we live & die with his moods. When he's having a great week, we all are and we he's having a rough week we are all at each others throats. If we had another kid the focus would be split and i think it would be better for Kyle and for us.

But we waited too long and I always feared what if the second one was more severe. How could we handle 2 Kyles?

But we regret not having a 2nd kid right away before we knew about Kyle...

So, I pose the question to all of you...

Where does the child with autism fit into your family dynamic? Was he/she your first child? Only child? Did the fear of having another child on the spectrum factor into your decision whether or not to have more kids?

Inquiring minds want to know... I want to know...

:-)

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