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The Curse of the Autism Caregiver November 7, 2008

Posted by hopeauthority in Autism, Family, Health, Parenting, special needs.
Tags: , , , , , ,

Well, I got a wake-up call the other day. It was the first HBOT “dive”. Since I am going into the chamber with my son, I needed a chest x-ray clearance.

My lungs look like I smoked at some point in my life. I never did… So, “Thanks, Dad”. (Of course, he can’t hear me complain about the damage he did to my young developing lungs since he died from emphysema many years ago.) And I haven’t lived with him or been anywhere near smoke for 35 years. I thought damage was supposed to repair itself over time? Well, anyway, I get the lung clearance. And I’m thinking that maybe this treatment will actually help me, too. Of course, I’d take lungs of charcoal if it meant ‘C’ could improve… (that’s the martyr in me talking.)

But it gets even better…

Apparently, my life-long perfect blood pressure is far from perfect. It was 140/90. My pulse was 129. Guess I’ve really let myself go downhill over the past few years. That’s what I get for avoiding the internist after my last visit … has it been 2 years already? … revealed “pre-diabetic” blood sugar levels and less than perfect cholesterol…”nothing losing 10-15 pounds wouldn’t fix”. But that damn Halloween candy is still attached to my ass. And there was that Easter candy before it. Friggin marshmallow peeps…

But seriously, many of us moms (and dads) get so overwhelmed with the daily demands of caring for our children with autism (and our typical kids too) that it’s easy to neglect ourselves. And the time flies (even though we are not having fun). And the damage is being done… Are you neglecting yourself?

When you are stuck in a hyperbaric oxygen tube for almost an hour and a half, you get a lot of time to think deep thoughts… Like what would happen to your autistic child (and the rest of your family) if you died? I can barely force my mind to go there.

Life is so hard. It really is. ‘C’s diet is so time-consuming, expensive, and plain hard to deal with. I don’t think there’s anyone on the planet who would implement it after I was gone. And who do you leave the kids with? That’s a hard enough question when you have typical kids. Most of the people I know with autistic kids don’t have the best family support. People just don’t “get” it.

So, starting tomorrow, I am going to take care of me.  Will you start taking care of yourself?  It’s like the oxygen mask on the plane theory. Save yourself first, or you can’t save your child. 

But I’ve got one thing to do before I get to the doctor…

I’ve got to chuck the friggin Halloween candy.



1. Fielding J. Hurst - November 7, 2008

We started HBOT this week. 3 hours a day, 1.5 in morn, 1.5 at night. So, we’ve been up at 5 AM.

I know what you are talking about with worrying about what will happen when you’re gone.

2. Patti Renner - November 7, 2008

You are so right about taking care of yourself. When you consider how important your life is to those around you, self care is vital – even if the guilt of doing something for yourself makes you feel selfish in some way. Do it anyways!

3. hopeauthority - November 7, 2008

Wow. Two sessions in one day?! That’s amazing. I was wondering how you were doing. For us, the ear pain was intense for the first ten minutes of the first session. Do you go in with your child? Is it complicated to run the machine yourself, or does a trained professional come in?

Good luck and please keep in touch! The more experiences we share, the better for us all!

4. Fielding J. Hurst - November 7, 2008

No complicated. We have the mHBOT for a month. No ear pain. We make sure she is sitting up, drinking fluids to clear the ear, and go slow on pressurization. She loves the thing and doesn’t want to get out of it.

5. hopeauthority - November 8, 2008

That’s great. The chiropractor who my son sees said most kids feel that way about HBOT because they feel better when they are in it. We have to lay down in ours (I go in with him). Maybe that has something to do with the ear pressure. It just the first 10 minutes. Glad it’s working out for both of us…I hate to think what it’d be like in there for an hour and a half if he hated it!

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