Wednesday, July 28, 2010

New Developments in Pottyland

(Warning: if you are at all squeamish about bodily functions, don't bother reading this post. Just know that there has been much success and also celebration in our house.)

There have been some Big Developments on the Potty Training Front for the past three weeks. These Developments are so huge I've been scared to write about them, for fear that this might somehow negatively impact them. But we are going on three weeks now--I feel more secure in publicly acknowledging them:

Kieran has been Pull Up Free for almost three weeks now. And he's been regularly going #2 in the potty in the evening. In fact, I did away with Pull Ups all together and we are "trending well" in all aspects of Potty Training, including Nocturnal Dryness--again, I can't stress how big this is.

To understand you have to go back in time almost 5 years, to when Kieran was turning 3. I did it all wrong. In fact, if there is one piece of advice that I would give any parent of an autistic child, be that child "high functioning" or completely "non verbal", it would be--Get outside expert help with potty training. Like, Real Experts. And I mean, people who have done this with lots of kids, not just special needs. People who, if you will forgive the pun--People who know their shit!

I had been told to take it nice and slow, so when we introduced the potty, it was no real stress--sort of a "Hey, what do we have here....? Oh, look! A Potty!" introduction.

Well, this really got us no where, as Kieran could have really cared less. Then we started with lots of sugary drinks and no underwear one weekend in February, when Kiki was 4 1/2 years old. And while, yes...7 hours later, he did pee in the potty, since there was next to no real structure, he really didn't "get" it and I just got frustrated when he wasn't "getting it" and still shitting and pissing all over the place.

I did it all wrong. I know that now. And to be honest, I kind of knew it then, was a tough time.

Then we moved to Toronto, and I put off all potty training until after we were settled--and wouldn't you know it? The little bugger suddenly starts peeing the potty all by himself. Unfortunately this newfound initiative did not follow through with moving of his bowels. He would only "go" in a PullUp.

To label Kieran stubborn is a major understatement. His conviction level, when he so moved, rivals that of Gandhi, and I'm not exaggerating. The hours that I have spent trying to coax him to relax on the potty! For weeks on end I have made this my sole focus, only to be shot down by Kieran's solemn, big brown-eyed gaze. "No, Mommy. I don't want to poop on the potty."

So, I'd back off and try again a few months later.

Well, there have been some big changes with Kieran in the past months. He's asking a ton of questions...constantly. It's like he's finally figured out that there this whole, big, baffling world out there and if he only starts asking some questions about it, it will all start to make more sense.

He also is really big on testing boundaries. While this is utterly adorable now ---"What happens if I don't go to bed?" "What happens if I don't eat my dinner?" "What happens if I don't get off the computer?"---I'm sure this will lose it's charming appeal when these efforts become more sophisticated.

But the point is, Kieran now is thinking so much more dynamically about the world around him and his place in it. It's exciting stuff. Heady, even.

And he's eating fruit. Lots and lots of fruit. Cherries are a big hit. Peaches. Strawberries. Blueberries. Watermelon has not been tolerated well, but we will try again (the texture is a little different, if you think about it). He has even tried broccoli, as well as squash and other vegetables. Now, I'm not going to lie to you. Vegetables are not his favorite, but he tolerates them, and will eat one to three bites. He does, however, love carrot juice. A juice that, by itself, make me want to retch. Who would have guessed?

So, the child has more fiber in his system. With the lure and appeal of the iPad I got Dave for Fathers Day-which worked at being motivation enough to get Kieran to sit on the potty for quite a while, combined with that extra fiber, and things just moved along. While he zoomed around the globe on the Google Earth App, he relaxed enough and felt like he could go.

I didn't believe it was ever going to happen. That very afternoon, I had a conversation with a friend of mine where I depressingly opined that Kiki was probably going to still be pooping in a Pull Up when he went off to VoTech School for Computer Programming. I really didn't believe. Which if you knew me is shocking, because quite frankly, I think my kids can do anything. I have the highest expectations of them than anyone, just goes to show you how exhausting and demoralizing potty training can be on a parent. (Got to keep the emotion out of it!!!)

So, after bath, I went downstairs to do something with Blythe and I left Kiki to Dave's hands. Well, wouldn't you know it, about 15 minutes later, a naked-from-the-waist-down Kiki comes downstairs. "Mom, I have something to show you." And there you go.

I don't think I can communicate how thrilled and relieved I was. And, although I remained cautious in my celebrations that night (we had to run to Target to get the new Buzz Lightyear toy), he did it again the next night. And the next. And the next.

As I said, it's been over three weeks now.
I don't have to buy Pull Ups anymore.

For the first time in over 9 years, we are a diaper and Pull Up free-house.


Saturday, June 19, 2010

Our HBOT Experience

Cam finished his 1st round of 40 dives yesterday. I say "1st round" because we will be doing this again. I'm not sure how I'm going to pay for it yet, but I will make it happen, and probably later this fall, finishing before the middle of December.

Here are some of the changes we've seen:

Cam has been playing with his toys. Now, in all fairness, he has been doing this for over a year now, but he really plays, with intent, now. I found him playing in Blythie's Barbie Townhouse this morning, making the little dog walk around the house. I've never seen this type of creative play in Cam. He's transitioning so much better. He's processing language much faster and he seems to understand the whole of the sentence you are telling him, whereas before I think he only got a word here and there. This would explain his lag in processing time before: think about it--if you only heard and understood one or two words of any sentence someone tells you (albeit, the important words) wouldn't it take you a second or two to figure out what the heck they wanted?

Kiki has seen some nice gains, too. He's talking a lot and asking questions all the time. And some of the questions are quite interesting, proving to me that he's really is listening and thinking about what's go on around him.

I find myself saying things to him more and more that I would say to to typically developing, 2 or 3 year old. For example, when he's been frustrated about something, I say "Kiki, slow down and use your words to tell me what you mean." And it works, which is pretty fabulous.

It's especially fabulous when you consider that Kiki is coming the end of Stage 2 in RDI, which corresponds with the development of a neurotypical two year old.

These past two months I've spent a lot of time trying to learn about HBOT and why it works: the biological mechanisms behind it. I came across this explanation on one of my listserves.

With hard chambers, the main reason for breaks is to let the capillary growth continue. It will continue for up to 90 days and then if you can do another 40, it will trigger the growth of more new capillaries.

The number one reason for doing HBOT to begin with is because of the lack of oxygen getting to the damaged areas. New capillaries provide a new avenue of delivery for the red blood cells which is the delivery mechanism for oxygen. In order to get that capillary development, a certain amount of oxygen saturation is needed. When the saturation goes away within 2 hours after a session, it begins to signal the brain that the oxygen is needed and the brain signals new growth. It requires repetitive signals every day to begin this growth.

With a soft chamber, this level of saturation does not occur. There is benefit but it slowly leaves when you discontinue the use of the soft chamber. The reason for the regression is there is not enough new capillary development to continue that oxygen delivery with red blood cells. There is no avenue of delivery.

Although most people are convinced I am totally against soft shells, they are wrong. The combination of soft and hard chamber use is the best therapy a brain injured child, whether autism, cp or for whatever reason, can ever recieve. I have always advocated to use both.

Unfortunately, the only training a DAN doctor recieves in hbot is from the soft chamber industry, mainly the IHA which was set up to promote soft chambers. Therefore, they base their advice on this training and info which is totally one-sided.

There was a DAN doctor in TN who bought a soft chamber for his own child with autism. They used it every day. The hospital he worked with had a hard chamber and they allowed him to use it for 17 treatments. The difference in results was large. He brought his son to us and we did 80 sessions and the improvements were major and permanent. That MD is now working with the Univ. of Alabama in studying hbot. He now advises the use of hard hbot. He uses his soft chamber for maintenance with his son.

It is the oxygen and not the pressure that makes the real difference and when you fine tune it with higher pressures the results improve dramatically. But the 100% oxygen is the first and foremost requirement. HBOT simply means delivering oxygen under pressure.

Robert Hartsoe

So, if you have happened upon my blog trying to find out more about HBOT, just like I did when we were beginning, hopefully this explanation will help you understand it a bit better. I do think it's a valuable tool with treating autism.

I'm not sure that it did all that I'd hoped (and what I've seen in other children), but I do see differences and I'm glad we did it.

We still have lots more to do and many more miles to go. But, as always, any real progress is always welcome.

Saturday, June 12, 2010

This One Summer

Summer is almost here.

Kiki is so very excited about the coming Last Day of School, that he greets me every morning with a sing-songy "Mom, I only have (blank) many days left!" Of course, he still will have ESY (Extended School Year) but that's just not the same as school.

In my feeble attempt to prolong summer, I've had the kids make a Top 10 List of the things they each want to do this summer. I've (of course) done my own. It's really quite cool to see the things they have come up with. My hope is that they will be able to compile a little book of their List, complete with pictures and descriptions.

I only wish I'd had something so cool and so personal from my summers as a child. All I have are memories of AGA Summer Camp: swimming at Timberlane CC Pool, lots and lots of mosquito bite, playing at the park at the local public school down the street and hot, hot, hot muggy days with afternoon thunderstorms. Hmmmm, may have to brainstorm these memories for myself.

Anyways, I'm thinking about meeting the kids off the school bus tomorrow with a big balloon bouquet and sign. Maybe "Summer Starts Now!" or something silly and fun.

It's all about episodic memory, isn't it? Time to make some This Summer...

Friday, June 04, 2010

20 Dives and Counting, An Update

So, here we are. Half way into our 40 dives of HBOT for the boys.

Notice they are in the chamber together. This is awesome, as it means I only have to drive to the HBOT center once a day instead of two. It also means a substantial reduction in the cost, as we now only pay for one dive, instead of two. Apparently the center really didn't want to do this, as they felt there was a liability issue---I guess they thought the boys could start fighting and severely hurt themselves before we could decompress and get to them (the quickest we could get it would be about 30 seconds). But, my boys are fine together. And I think Kiki would be sad if he didn't dive with Cam for some reason.

So here we are, halfway in, and as I promised, I wanted to give an update:

I had a long chat with Cam's teacher, which was originally about this next year and Cam's educational placement. She was quite definite in her assessment of the past month and a half: whatever it is we're doing, keep doing it. Her words exactly were that "Cam is just here, much more present with us, instead of in his own little world." This is so cool because I feel the exact same way, only I was looking for it. Nice confirmation from another, independent source, as they had no idea we were doing this.

Now, I haven't had a similar conversation with Kiki's teacher, but I will. However, I see that Kiki is talking more, expressing more of his thoughts with his language, and that his language is more nuanced. He's paying attention to nonverbal cues more. He's just progressing.

One thing I will say is that the boys have been INCREDIBLY wired in the evenings when they come home from HBOT. And that's what being in 100% oxygen at 1.5 times air pressure will do to you. It's like putting your foot down on the gas pedal of your metabolic engine. Like most things in life, it doesn't just "settle back down nicely" because you want it to do so. But it is getting better.

So far, so good. I'm looking forward to getting my afternoons and evenings back in a few weeks, though.

Friday, May 28, 2010

Everyday Parental Epiphanies

Go placidly amid the noise and the haste,
and remember what peace there may be in silence.

As far as possible, without surrender,
be on good terms with all persons.
Speak your truth quietly and clearly;
and listen to others,
even to the dull and the ignorant;
they too have their story.
Avoid loud and aggressive persons;
they are vexatious to the spirit.

If you compare yourself with others,
you may become vain or bitter,
for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career, however humble;
it is a real possession in the changing fortunes of time.

Exercise caution in your business affairs,
for the world is full of trickery.
But let this not blind you to what virtue there is;
many persons strive for high ideals,
and everywhere life is full of heroism.
Be yourself. Especially do not feign affection.
Neither be cynical about love,
for in the face of all aridity and disenchantment,
it is as perennial as the grass.

Take kindly the counsel of the years,
gracefully surrendering the things of youth.
Nurture strength of spirit to shield you in sudden misfortune.
But do not distress yourself with dark imaginings.
Many fears are born of fatigue and loneliness.

Beyond a wholesome discipline,
be gentle with yourself.
You are a child of the universe
no less than the trees and the stars;
you have a right to be here.
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.

Therefore be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.

With all its sham, drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful. Strive to be happy.

~Max Ehrmann's Desiderata

I first came across this humble bit of prose on the occasion of my graduation from university. My mom gave me this beautiful card with this piece of wisdom as an Illuminated Illustration. I've found it to be endlessly comforting and meaningful. I think I've quoted it to myself during times of stress more than anything, even Shakespeare.

I bring it up because I've found myself to be under a bit of stress and upset over the past few days. I find myself watching the boys, carefully studying their behavior for signs of change, and I tend to get upset when I don't see as much progress as I want.

We are smack in the middle of our 40 HBOT treatments for the boys, so I feel like I should be seeing some things, and we are, but probably not as much as I would like. The truth of the matter is, I believe that their autism wasn't caused by any one thing. So it makes sense to me that no ONE THING is going to be the defining moment of change for them. It's many things, including but not limited to experience.

This is a Marathon, and not a sprint.

And, as I've also quoted to myself (and others) probably hundreds of times in the past 8 years or so--"The point of parenting is not to raise perfect children."

There is no race to be won.

There is no prize to earn when your child reaches the age of consent, or graduates from high school or college.

There is no one watching and grading you as you go along...well except for maybe your In-laws (but that's another post for another day...).

The only persons whose happiness you can influence, and should therefore worry about, are yours and your children's.

And when I truly realize this and digest it, I feel a weight lifted off my shoulders. Hey, as long as we are happy and enjoying the ride, what does it matter if my kid is a little (okay, a lot) quirky? What does it matter if he enjoys spinning and lining up his toys and laying in the grass, staring up at the clouds, instead of playing with the kids around him?

It doesn't.

And there really is so much freedom and relief in that realization.

But it doesn't last, that epiphany of relief and release. After a while, my expectations and desires creep back up again, kind of like a vine that has to be pruned back under control after a rainy month. It's me and my expectations that are the problem.

My kiddos are just fine, being who they are. It's their parent that has the problem.

Monday, May 17, 2010

Feeling a little down today

I'm feeling a little blue this Monday, and no, I'm not talking about the New Order song (did I just date myself again?). This happens every once in a while, particularly when I'm in the middle of something time consuming, such as we are with HBOT right now.

It all started with being around other kids with the boys.

At school, Kiki has a social skills group that meets once a week. One of the parents of this group reached out to all of us to see if we could and would be interested in getting together outside of school once a month. I think the idea was to naturally extend what happens at school with the boys, and to network amongst ourselves as parents.

And it's been very successful...for the other boys.

For Kiki, it just seems to highlight to me how very overwhelming being around other kids (particularly boys his age of 6/7) is for him. He wants to be a part of the group, but after a couple of minutes, it just gets too much and he segregates himself to the edges of the playground. *sigh*

Now, I know sometimes people feel sorry for me, particularly when they first meet us, because of the fact that we have not one, but two little boys with autism. But it's funny. I very rarely feel sorry for myself or our family. And the only times I do is when the Outside World intrudes.

Like when the Canadian Government at first refused to allow us to move temporarily to Canada for my husband's job because the of the boys' autism. Or the time Kiki got "asked to leave" (please read kicked out) on the first day of preschool because he wanted to play with the new toys and not go to Circle time (and so he screamed for 15 minutes when they took away all the cool toys). Or when I see both the boys with their typically developing peers and realize just how different, and how far behind, they are from those NT kids.

So here I was, last Sunday, sitting under a shady tree with Kiki, trying to get him to want to play with the other children, and feeling more than a tad sorry for myself. And, as I looked over at the other moms (who, let me just say here, are all incredibly nice and supportive people), I'm thinking, "These ladies don't work anywhere near as hard as I do to parent their children! Although their kids are in the social skills group alongside Kiki, their kids are doing soooo much better than mine."

They don't spend hundreds and hundreds of dollars a year on biomedical stuff and figure out new and creative ways to get vitamins and supplements into their boys. They don't surf the web endlessly for new research on autism and it's causes. They don't drive twice a day to the HBOT center 25 minutes each way. They don't have to constantly check themselves on whether or not they are being too imperative and prompting in their communication style.

It just doesn't seem fair sometimes.


I know. I know.
I'm being a whiny baby.
Toughen up, Sweetheart!
There are no promises in this world.
Life sucks, so get a helmet!

Pity party over. Back to work.

Tuesday, May 11, 2010

My Secret Weapon with Biomed

When I began Biomedical Supplements with my boys I admit I was a little lost.
I remember thinking to myself, as I looked at this big bottle of capsules, "How in the hell am I supposed to get this into my children's bodies? I can't even get steamed carrots into them!"

It occurred to me then that I could just open the capsules and mix the contents in some sort of strong flavored juice. So, that's what I did. And I used the 2 teaspoon oral syringe that I got from the drugstore.

But I have to admit, it was time consuming. In order to make some the the stronger stuff more palatable, and frankly potable, I needed to dilute it in more juice, like a 1/4 cup (which equals 3 tablespoons, if you will remember from that cooking class you took back in your early twenties). Which means, you are giving them this dose of juice 5 or 6 times. Not fun.

But then, one day, I came across this miracle

It's huge! It holds more than 35ml of liquid. That's over 7 teaspoons! So, I mixed those nasty tasting supplements into an ounce or so of pomegranate juice (super tart and it kinda grows on you after a while) and away we were. I've also used them to get freshly squeezed juice down them, but that's another post for another day.

I've learned some other lessons the hard way. Things like, never give your kids supplements on an empty stomach (or else you will be seeing them again very soon, probably all over your floor after your child throws them up). Or how to space the different supplements out by 20 or 30 minutes (I learned to set the oven timer to help me remember to give the next dose).

And not to give up.

As a wise doctor once told me, first you do what you can. Then you do what's possible. And before you know're doing the impossible.

My only regret about biomedical intervention for my boys autism is that I didn't start it years ago.

Don't bother asking your local pharmacist for the oral syringes btw. They won't know what you are talking about, or at least they had not a clue what I was talking about when I asked them. I got them here. But if you don't want to buy 25 or 50 of them at a time, you can buy them in smaller packs on eBay.

Saturday, May 01, 2010

HBOT and the Modern Family (with 2 Autistic Kids)

So, we have embarked on a new therapy in our house: Hyperbaric Oxygen Therapy.

40 dives over the next 8 weeks. With two different kiddos, two times a day. It's going to be a busy two months :(

So, how did I come to this place. Well, I think it's a case of that old saying--When the student is ready, the teacher appears. As anyone who knows me knows, over the past couple of a year or so, I have become a big believer in biomedical treatment of autism. I've used it with both my boys, with some success.

Well, I was at a TACA parent support meeting in my area, and one of the parents there (who is a medical doctor, btw) got up to talk about HBOT and how he credits it as being a big part of helping to recover his twin boys from regressive autism. I made a point to talk to him after the meeting, and he basically talked me into it.

Don't get me wrong, there's a fair amount of science behind HBOT, but basically he talked me into it. He's very passionate about HBOT and recovering kids from autism. Did I mention he's a surgeon? That was my first question to him, btw..."How on earth do you deal with all the negative press and outright hostility towards biomedical intervention with autism?"

He responded with "Because it worked with my kids. Although we doctors like to think we know everything...what we don't know about the human body far outweighs what we do know, particularly when it comes to the brain and its development from infancy to adulthood." He mentioned to the Germ Theory of Disease, the cornerstone upon which all Western Medicine is founded, and how it was rejected for literally centuries until proven by many dedicated doctors and scientists.

What I do know is that HBOT really cannot hurt my boys, in the same way that supplements and vitamins haven't hurt them, and because this past year has been their healthiest year ever, I will continue to try to look for the best and brightest future for them.

But first, I have to get through the next two months and twice daily trips to the HBOT center. I will let you know how we do and what differences we see (if any)in each of them.

Thursday, April 08, 2010

Food and Life, Life and Food

Kieran ate two bites of strawberries last night. Completely his own idea. I know this might sound rather paltry and somewhat sad to some folks, but it's downright shocking to me. I'm still kind of processing it.

You have to understand, my son doesn't eat a variety of things. In fact, most of his diet is beige in color: pasta, bananas, white rice, chicken nuggets, cheerios, etc. There are no bright colors in his diet, with the exception of things with red or blue 40 artificial food coloring (Icees are included in this group, along with candy and potato chips). He just won't eat. Anything. Else.

And when I've had this conversation with health minded folks, I see them look at me with a sort of condescending gaze, "Well, you just shouldn't give him a choice," they'll say. As if it's really possible to force a child to eat something they don't want to eat.

Well, about a month ago, with the support of my Behavior Specialist, I went ahead and did just that. It wasn't pretty and in a lot of ways in felt wrong. I didn't force the small, dice-sized square of pizza in his mouth, but I made it clear he wasn't going anywhere until he chewed it and swallowed it. I think it took 45 minutes from when we started to when we finished, and he threw up five times before he managed to keep it down. Bare in mind this is only pizza I'm talking about: not liver, not arsenic, not anything even particularly nasty.

But it worked, and since then we've kept at it, adding new foods every week or so. Strawberries are the newest and because they are a natural food source, rich in antioxidents and flavor, I have embraced them. Okay, so until the fresh ones from the farm down the street come ripe, I do add a teaspoon of sugar to make them a little less sharp-tasting. But believe me, it's so much better than some of the other things he prefers to consume.

Today it's strawberries. This summer it will hopefully be cherries and peaches. And who knows, maybe by winter I'll get him to eat a real live vegetable--wouldn't that be something?!?