Friday, December 28, 2007

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.

Thursday, December 27, 2007

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.

Tuesday, November 27, 2007

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

Being married to me, my husband is just not on the radar for any services that will benefit him--even though he only received diagnosis six years ago-- even though he hasn't had a single minute of the years of intervention therapy that behavioral therapists state is crucial to most individuals on the autism spectrum.


Strangely, as his caregiver, I am even more invisible than he is. As I surfed the web looking for answers, there was nothing out there referring to spouses of autistic adults. Many sites welcomed 'parents dealing with autism', and I felt totally displaced. Clearly everyone thought that I shouldn't be married to an AS guy--he needed a mom not a wife!

When Nashville's Vanderbilt University Child Development Center agreed to take him on as a client (never mind the toddler toys in the waiting room, and the cartooney wall art), we were so grateful for help that he didn't mind facing the embarrassment of going to a 'Child Development Center' (at that time, most adult therapists in our city had never heard of Asperger's Syndrome).

So, the psychologist met with us a few times. I felt at times that she was consulting with us because she was curious to 'see the married autistic couple'. We came out of there, armed with a small handful of suggestions--my husband was to keep a running list of his priorities and spend several hours each week self-evaluating which of his goals had been achieved, and I was to purchase and start using a bulletin board ("color-coded might help") and post schedules to keep him on task and organized.

Maybe she thought we were running a PTO fundraiser campaign!

Six years later, I have several moderately expensive, magnetic, dry-erase and compartmentalized schedule boards stored up in the attic. At least that psychologist tried to address my questions. In the years following her modest attempts, here's a sampling of what I've been told by various advisers and professionals in the field:

"Get out of the marriage--the drugstore's open so let's find a drug that will make him happy--you'll never get any of your needs met, and I have never met a spouse of an autistic person who did not get a divorce--all you can hope for is to find activities that will make him feel happy so he can enjoy his life more--just kill him and tell God later that you didn't do it (said in jest)."

Thankfully, none of this helpful input included advising that I kill myself, because there have been some bad days...

Sunday, November 25, 2007

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

In a February 2007 American Journal of Public Health article, "Framing the Public Health of Caregiving," Ronda Talley, PhD, MPH, and John E. Crews, DPA, contend that "surprisingly little attention has been focused on framing caregiving from a public health standpoint." (quoted from the Family Caregiver Alliance)

I had always envisioned a family caregiver as someone typically dealing with a hospice or perhaps an eldercare type of issue-- Alzheimer's, Parkinson's, stroke, dementia. But in our case, Asperger's Syndrome never impressed me as a matter requiring me to be a caregiver as the wife of an AS (Asperger's Syndrome) individual.

I realize now that my line of thinking was representative of the big-huge identity crisis going on in the field of autism advocacy. American TV viewers have recently seen Jenny McCarthy on Larry King and Oprah, and the media images of her cute-blond autistic toddler might come to our mind's eye as we consider the burdens of those who lovingly and sacrificially take care of autistic family members.

My autistic husband is 51, and while I still think that he's cute, it is not endearing to face his unemployment and my frustrations about the daily tasks that he struggles to perform.

We've tried to get some additional vocational training and developmental skills services for him, but because he's an adult, and because I am considered to be his guardian/caregiver, he falls into a gaping hole in our regional social services safety net.

I should know. I spent six years looking for services and they don't exist in our state... read part two

Monday, November 19, 2007

Road Maps

Do you hate asking for directions as much as I do?

When I'm getting ready for a road trip somewhere, I make sure the trusty atlas is in the back pocket of my car seat, and I check my favorite online map websites for the quickest and most direct routes. Making good time is always my goal--it's a silly but engaging game to make the best time possible without breaking too many speed limits!

Finding the road map for living with Autism has been much more difficult. When Bruce was diagnosed, we were still using a dial-up internet modem at 28k, and navigating the web for support information about Asperger's Syndrome was slow and frustrating.

I did notice that most of the information was for parents. Everybody was encouraging parents to pursue early diagnosis and early interventions to help in educating their autistic kids.

And while I really appreciated the importance of this info, I felt left out. There was almost nothing about 'having an autistic husband' or 'how to handle the emotional isolation' that I was experiencing.

So, I've been on this long road trip--six years of trying to find a community of folks to relate to, and quality resources to help me deal with the varied and all-encompassing responsibilities I have.

High-functioning adults who, later in life, are diagnosed on the autism spectrum don't have much in the way of services in the U.S. At least not yet. I recall feeling that it would have been great if there had been some map to guide us in the process of grief- anger-acceptance that we've stumbled through.

I've learned a lot --probably more than I really ever wanted to know about Asperger's Syndrome! The biggest deal for me was letting go of being afraid to ask questions. No question is too dumb to check out and when I ask others to help me, I usually learn about new advocacy groups and new ways of viewing Autism. I even learned that I was an Asperger's individual myself!

Everybody has their favorite way to travel. Some of us want to get there quickly, others can just ride along and enjoy the scenery. In my case, I've hit a lot of holes in my road!

Perhaps this might help some of you-- in the coming weeks keep checking back. I'll be adding some of my favorite support groups and websites for adults and family members who are dealing with Autism.

Maybe then, you'll make better time than I did.

Friday, November 9, 2007

Fall Back

We changed our clocks last Saturday--falling back seems to be easier to adjust to than the spring forward deal. Perhaps we could all use an extra hour of sleep, but the truth is I just stayed up an hour later!

Diagnosis for my husband Bruce was over six years ago, and I often get frustrated about the lack of any progress in our lives. While getting his Asperger's diagnosis at 45 was simultaneously liberating and devastating, I really thought that we were heading somewhere after finding out the 'why' behind his behaviors.

Naively, I had hoped that being able to name the problem would help us deal with it.

Yesterday, we came home to a cold house. No, the furnace wasn't broken--Bruce just doesn't seem able to grasp how the thermostat settings should be determined.

In my childhood home, my dad took care of the environmental and repair issues. He carefully monitored the temperate comfort of our house, and fixed the cars when they needed it. You know--the dad stuff.

So...I have these expectations.

Alright, I admit that begrudgingly, I have accommodated mine--I know that Bruce cannot fix the cars, or the plumbing (or frankly most things mechanical), and that he will never show any real interest or aptitude in managing our financial lives. Just getting a job would be a big step for him.

But I really thought that I could teach him to reprogram the $50 thermostat every season.

I nagged him into doing it earlier this week, when the weatherman warned north Alabamians about the hard-frost that was coming.

And he did do it, dutifully going through the 'wake-leave-home-sleep' cycles and setting what he thought would be cost-saving temps for each.

Have you ever tried maintaining your home's temperature in the low to mid 60's? I woke up to a bedroom temperature of 59 degrees, two days ago!

So, when we arrived home and it was cold again, I walked my husband into the hall, and asked a few pointed questions....Haven't we gone over this before? Don't you know that 63 degrees is too cold for us to live comfortably? Didn't you listen when I've explained this last year?

He doesn't remember. I forgot, too.

I forgot that no matter how many times I train him in some appropriate task, that it's a dice-throw. Bruce will probably do it right in that first moment, but give him a week or a month from now, and he probably won't be able to access the information that applied to the task.

And where you or I might improvise, research, or ask questions, Bruce will just grab or guess at a conclusion based on his own illogical reasons. He sincerely wanted to help us save money on our utility bills, so he set the thermostat with no practical consideration for the comfort and health of the humans around him.

Yep, I fell back. Right into the hole of my old expectations, and frustration. I can justify myself with good reasons--my need to be taken care of (I've had a bad cold), my frustration at repeating the same instructions week after week, my crazy stress in trying to work two or more jobs while raising autistic kids and going to college--lots of good reasons.

I think that I'm the slow learner. Bruce forgives me for my rant about the thermostat--it's just hard to forgive myself.