Thursday, October 05, 2006

Diary of a mad autism mom...

Ok, I'm not crazy yet (confirmed by several independant sources :), but if I had to rate the stress I've had this week so far on a scale of 1-10 I'd have to give it a 15 at least... On the way to the grocery store this morning I had some time to reflect on the week, & also notice the beautiful blue sky & the huge, puffy clouds, & realise that I'm actually doing ok, in spite of it all :)

The really stressful stuff has been in three areas, mainly. The over-arching concern has been B's uneven transition to 5th grade. The last couple of weeks he's been in a cycle of having a pretty good day, but being overwhelmed by anxiety & tics in the last 15 minutes or so, which pretty much ruins the whole day in his mind. He's distraught by the time he gets in the car & it carries-over at home. He's not been able to do homework (at school) at all this week & has been too distressed to remember to bring home his "how does your engine run" sheets for us to complete at home. Yesterday he had the opportunity to have a fencing lesson after school but just couldn't cope, & all afternoon & evening when he wasn't distracted by computer or videos he was nearly paralysed by anxiety & tics. It's not like this every day, but the uncertainty of what I'm walking into when I get to school is adding to the stress I carry. I find myself longing for summer vacation (!) when he was home all day & we did stuff together & had fun & I knew what his state of mind was from moment to moment. Both C & I wonder just how far school will be able to go to accomodate B's anxiety & behaviours due to the anxiety. His new psychiatrist has started upping his zoloft dosage (aka: "operation get B off of seroquel") slowly & he's tolerating it better than ever before, so we have hope that this will take the edge off of B's anxiety & help him enjoy his life more than he is now. That's the bottom line as far as I'm concerned...

So, if I had my wishes this would be the biggest & main concern in my life right now. Contrary to some of the images of autism families in the media, I like the very important work of raising my son & do not find his difficulties "devestating" or "a dead end existence". But life is not lived in a vacuum...

On Monday I had a regular visit with my internist (I see her about 4 times a year for a check-up, since she likes to monitor my thyroid & other chronic stuff). After having had the bone scan a couple of weeks ago I'd been waiting to hear from the rheumatologist she sent me to, about the results & what he'd recommend for my arthritis pain, which has been getting progressively worse over the past couple of years. My initial interview with him in early September had left me feeling elated- someone was finally listening & perhaps offering some suggestions to help me cope with the chronic pain. Although I hadn't yet had the promised phone call from the rheumatologist, my internist had already gotten the results of the bone scan & a summary from the rheumatologist as to his recommendations. She told me there was no sign of "hot" (inflammatory) arthritis in my joints, although there is arthritic degeneration in my hands, feet, & lower back. The interventions suggested by the rheumatologist made my internist & me look at each other in disbelief. He suggested NSAIDs, which I'd told him make me ill, antidepressants (because of the "difficult" relationship I have with my autistic child (!) ), exercise (which my knees don't really allow me to do...), & a sleep study! (because I'd mentioned that I don't ever roll over in my sleep, but have to wake up to do so because of the chronic pain). I had mentioned my kid to him in the context of needing to have my energy running at an optimum level, not running low due to pain. I never told him that B was "difficult". I was steamed big time by that one, let me tell you... It felt like a terrible slap in the face, especially because I thought this guy was really listening & was likely to help. I would not have minded his calling & telling me that there wasn't anything his specialty could do for me, in light of the test results. To be dumped with an unrealistic list of reccomendations was really the last thing I expected & it was hard to keep from weeping at the letdown. It was heartening that my internist was just as taken aback as I was. When C came home for dinner I told him what had happened. His take was that the rheumatologist had not done a terribly good job of communicating with me & that I was right to feel let down. He wondered if I should call the hospital's patient advocate, but we finally decided that C could just send this doctor an email explaining how I was feeling in the aftermath of his handling of my "case" & pointing out how the communication could have been handled better. As C is a colleague & a doctor who potentially refers to him, he thought he might be able to get through to him. In the aftermath I am left wondering: why don't more doctors understand how important it is to communicate well, both in listening & in conveying information, with their patients? It really shook my sense of myself, to be categorised, essentially, as a depressed housewife who just needs some antidepressants to put her life back together, & not as a person of dignity with chronic pain & a need to find solutions so life can be easier...

The other main stress-inducing area of life has been a conflict I've been involved with for the past few weeks, with the minister of our church. I had been offended by a service he did in early September where child care was not offered, so that kids & families had no alternative but to stay in the service, & that he did not accomodate these needs by making sure the service &, in particular, the sermon was shorter & more directed to the kids than usual. I should explain that I am Unitarian Universalist, & in this denomination there is more responsibility shared among the church leadership (which I am part of) for the way the church runs. We are not as much of a "top-down" organisation as many organised churches, & we call & hire our own ministers, rather than their being assigned by the denomination. I have been voicing & in dialogue with this minister about my concerns about how families & children are accomodated in our church for more than 2 years, & this service made me realise that he's just not listening... I am worried about how this failure to be welcoming to families will affect our membership- both current & potential, & since fluctuating membership is an issue for our church, I think these concerns need to be taken seriously. So I wrote a well-thought-out email (not just a fired-off one) expressing my concerns. He never responded to my email & I was called by another member of the church leadership to say that I had hurt the minister's feelings & that he wasn't feeling "safe" with me. C read the email & didn't see anything disrespecful or injurious... but everybody is entitled to their own opinion, I guess. In the end, there were 2 meetings with "go-betweens" who tried to explain what was wrong about what I'd done (one person actually tried to "slap my hand" metaphorically, telling me I'd done something inappropriate by contacting the minister this way, which shocked C big time) but when we examined everything in detail we never got to what exactly I'd done that was "bad". The minister finally agreed to meet with me & the go-betweens yesterday morning. C went with me, bless him. My stomach was a mess. I was more worried that my pent-up frustration would get the better of me & I'd say something "inappropriate", than I was worried about what the minister had to say to me. I was a good Jedi, though, & behaved respectfully & yet was not a doormat either :) My biggest sorrow, coming out of the meeting, was that he never understood how he'd disrespected families & young children by choosing to preach for 15 minutes that Sunday (& this person has 3 kids...). He decided that his message to the adult members of the congregation was more important & would not be moved on this issue... he did, however, agree that he could use some help when planning services when the kids are there the whole time, so that gave me some hope that, perhaps things can change in the future. The other main issue was that I had emailed him about my concerns, rather than calling him or speaking face to face. This has been a chronic issue between us, & I think is basically one of communication styles. He had told me in an email a couple of years ago that "it is best to communicate these sorts of feelings in person", but I replied to him that I did not agree with this statement. I feel that it's important to allow people to communicate the way they do it best, & my best way is to think & then craft a well-written email that explains my concerns & feelings. Although I don't believe he'll ever really buy that it's ok to communicate with the written word, he conceded that I might continue to email him (I'd been asked not to do so until we had resolved the current conflict) if I sent a warning email first when I was going to send him a note about concerns or my emotional responses to things. I agreed that this was reasonable. We also got to talk a bit about our church's lack of a policy & process for dealing with conflicts with the minister, & in the end I felt that at least this concern had been heard loud & clear. Looking back on the past few weeks of stressing out over this conflict, I don't regret that I raised my concerns or how I raised them. My church has been like a family to me for nearly 30 years & it's important to be part of making it a better place for everyone. I have served as a church leader for too many years to let issues that I think affect the whole community slip by. It's hard work, like raising a child, but important in its own way.

So... as I was thinking in the car today & wondering why I'm not crazy from the stress & distraction of the past few weeks/days, I thought about the blessings that allow me to get through & keep on going... C looms large in the blessing category :) Not only did he validate my experiences with the rheumatologist (which goes a long way in preventing one feeling like they're crazy) & sit in on every one of those meetings for church, but after yesterday's face-to-face meeting at church he made sure that our next stop was the local hand-made chocolate shop. Just walking into that place & sniffing the air put me right back into my body. Mmmmm.... I have my own personal box of chockys, now, too- to help me recover :) B is, of course, next on the blessing list. Even in the midst of his own distress, he rarely fails to respond to humour or goofiness, & that makes me feel good. Sometimes that's all it takes to get him back from the edge of meltdown. When I went to get bring him down to dinner yesterday, as soon as he turned off the tv he went into whimpering melt-down mode & started banging his head into my chest. As I tried to sit on the foof chair & hug him, I sat on a lego & jumped up with a yell. He calmly (!) told me I'd sat on a helocopter & I said "ahhh- weaponry up my butt!" (ok, it was crude, but we're dealing with a 10-year-old here), which got him giggling so hard he forgot the melt-down entirely. Whew!! And a blessing. Last night I had a couple friends over for our school knitting group & it was so lovely & relaxing to sit & chat. I didn't even need to say much about the day, just enjoy their company. Reading & commenting in the blogs I read regularly really is a blessing too. That sharing is invaluable to me, to get a sense of perspective & challenge me about how I'm thinking about/doing things. So you folks are a big blessing, too!

As much as it's therapeutic to vent some of the stress now & again, it really is good to remember my blessings & the reasons why I am not only not crazy (confirmed by independant sources, remember :), but not likely to even go there. A great blessing indeed!

2 Comments:

At 3:07 PM, Blogger Penny L. Richards said...

Been there, with churches that like to have young families around--the kids are cute, it makes the place feel alive--but don't want to do anything differently to accommodate the realities of including children (with or without disabilities). Even got scolded for concerned emails that made the pastors feel "attacked."

Wish I knew the answer--besides leaving and looking for a better environment (which is what we did, in the end, very reluctantly). You're right, if you've invested decades in a place, it's maybe worth more hard work--changing churches is never easy.

 
At 10:02 PM, Blogger Kristina Chew said...

Love the title for this post!

Stessings and blessings, but the latter outweigh the former always.

 

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