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.