Christmas Presence

I hope that many of you truly enjoyed the true meaning of the holiday with loved ones around you.

If you have an autistic family member, then you probably know that the holidays can also be super-stressful. Changes in routine, having company over, family gatherings, and yes, those pesky holiday expectations, all adding to the autistic meltdowns, disappointments, leaving early, or in many cases, never even going out. This year, I missed the only Christmas party I was invited to, because one of my Asperger's sons was flipping out. I just couldn't go and risk his adolescent, out-of-control behavior for a few hours.

Silly me, I want my life to look like those diamond jewelry commercials. You know, the husband buys his wife the diamond necklace/bracelet/earrings of her dreams to tell her how cherished she is. He smiles knowingly as her eyes grow wide in amazed realization--"he really loves me!" is the message.

Well, my guy doesn't buy presents. Last year, sinking to a new low, I purchased my own presents so the kids wouldn't be distressed about my not having anything from them or their dad. This year, I decided to let them in on the truth. My husband didn't even try to get in the car to go shopping... not even a bookstore or Wal-Mart gift card. Nada.

I'd never experienced nothing under the tree before.

Actually, I found that I was strangely calmed by letting his actions speak for themselves. Instead of manipulating the circumstances to make our family holiday look more "normal", I just left the situation in the hands of whoever wanted to contribute. And my boys did try--I was proud of them. My 13-and 16-year-old sons, helped me finish painting the kitchen several days prior to our Christmas dinner, and my nine-year-old didn't pout about only getting one inexpensive Christmas toy this year, since finances are tough.

I felt less depressed than I have in years, and since I didn't have to lie and cover-up for their dad's non-involvement, well, I didn't get terribly disappointed either.

Besides, it's not actually about the presents is it? Honestly, what I've been longing for all these years is my husband's presence in our family holidays--the intimacy of mutual decisions, plans for our future, and the opportunity to share our innermost thoughts and feelings. And that's not going to happen for us in the near future.

So, a gift-wrapped expression of affection and appreciation isn't the biggest deal. I really just wish he'd thought about me this holiday.

Caregivers-- Who Takes Care of Us? (part three)

The Burden of Caregiving

"Although family members commonly undertake care for an ill or elderly loved one willingly and find it to be a great source of personal satisfaction, caregivers themselves need support services. A large and growing body of evidence confirms that providing care for a chronically ill person can have harmful physical, mental and emotional consequences for the caregiver."

Since the truth can set us free, I am including data and quotes from the Family Caregiver Alliance from their website (see links section of this website).

Key findings

"Informal caregivers are at risk for many different physical and mental health challenges.

They:

• Suffer from high levels of stress and frustration.
• Show higher levels of depression than the general population
• Sometimes exhibit harmful behaviors, from increased use of alcohol or other substances to higher than normal levels of hostility.
• Are in worse physical health than those not engaged in giving care. They have more chronic conditions such as heart disease, high blood pressure, diabetes and arthritis than their noncaregiving peers. They may also suffer from poorer immune function and from exhaustion.
• Neglect their own care (have lower levels of self care and preventive health behaviors than others).
• Are more likely to lack health insurance coverage due to time out of the workforce.
• Have higher mortality rates than noncaregivers of the same age."

After a serious wake-up call from my doctor, I came across this information which amplified exactly the same concerns she discussed with me.

I didn't really want to hear what she said--me, I'm the stick-your-nose-to-the-grindstone kind of girl. I have always believed that if I could figure out how to do something, that it could be done.

The problem is, that this is totally performance-based thinking...my goals are good, but my real capabilities and limits must be included in the plans I make for myself, and my family.

Yep, just ask me about the pain I experience with the exposed dental roots of my teeth from 14 years of no dental care. Or, how about what it's like to live without health insurance for almost a decade--it's really tough to obtain medical care without insurance, believe me.

Just recently, a friend and adviser finally talked me into allowing a benefactor to pay for my medications (I had been rationing them for most of this year). Yeah, I know better than to do that, but there I was trying to get along on my own. It's so nice to not worry about my prescriptions anymore--now I can devote that energy to another battle for our survival in the autism jungle.

The greatest obstacle to getting support has been a matter of perception really. I have been so isolated from spiritual, social and even family support because I thought that sharing honestly about my lifestyle as a caregiver was just whining.

Not true, but it sure felt like it was. Reality set in as I read the fact sheets that the FCA published on their website...now I feel much more confident that it's not about whether I'm doing a "good-enough" job of taking care of my autistic husband and kids.

It's also very much about taking care of myself.

If you know a caregiver of autistic children or adults, ask how you can help them--not just once, but keep asking. After awhile, they might just believe that you really want to help, and then you can truly make a difference.

If you need ideas on how to help, e-mail me with your request for caregiver support ideas.