Monday, January 09, 2006

History pt. 1

When I decided to start a blog, I was partly inspired by blogs of other parents of children with Aspergers Syndrome. In order to put the rest of my ramblings in context, I've decided to fill-in the gaps from before B to the present with intermittent History posts. I'll put a picture of little B (at ~ 18 months of age) at the top, to give the child I'm writing about a face...

I was one of the legion of women who desperately wanted children & went through agonies before being able to have one. Sometimes I remember what it was like... mostly, I think, because I'm far enough away from the pain, time-wise. It was awful. I didn't get married to C until I was 30 (he was 25) & not 3 months into our marriage, in early 1989, I went into Survivor crisis. I am an incest Survivor & had a Conversion Reaction to the abuse that put me in a wheelchair from the age of 18- 25. I had gone through the recovery from the illness that had put me in the chair & knew that I was a Survivor, but didn't really deal with the deep emotional damage until I was safely married to a wonderful guy (I think that's one reason I survived- good instincts!). I shut down emotionally on so many levels at this point that it was a miracle I was able to keep my job, let alone my marriage! It took about 3 years of intense therapy- group & individual- to function "normally" again & get on with the business of really living. My husband went into therapy with me at this point, which helped to forge us into the couple that now copes with a child with Aspergers & still finds life enjoyable. I am tempted to say "there are no accidents" but I'm not sure I believe it (I was a scientist in my pre-parent life, can you tell? :). After life was back under my control I seemed to move right into baby-deprivation mode, so the misery just seemed to change focus. Sigh. I underwent some infertility testing, but my ability to tolerate more invasive procedures was limited by my Survivor "stuff" (read: emotional baggage). Charlie also was tested, & the only thing they could tell us was that it would just take time... In 1995, when I was 37, we decided to adopt a child from Korea & started saving our money for all of the expenses involved... & 3 months later I was pregnant!

I think I finally allowed myself to believe I was really having a baby some time in the early weeks of my 6-week bout with "all-day sickness", during my first trimester. I only threw-up once, but just couldn't eat & lost 14 lbs! This was the first time in my life I had people hovering & trying to get me to eat (I had been "chubby" kid- grrrr! hate that label!!). Other than that, the pregnancy was utterly normal. I was in the care of a great midwifery group who was willing to take seriously my interest in using herbs during pregnancy & guide me safely through. I think we were the first physician couple they'd had in their practise because they often teased C about his unwillingness to "catch" the baby himself. He had delivered loads of babies as a resident & was firm about his intention to stay at "my" end during delivery, rather than the midwife's end of me (did that make sense?). We even went to the Virgin islands at the beginning of my 8th month of pregnancy, sailing for 2 weeks on a 40 ft. boat. We'd planned the trip with my in-laws before I became pregnant & we all decided that I was healthy enough to go. It was wonderful!! I bought the brightest bathing suit I could find & floated in blue waters with a beachball for a belly. My husband really enjoyed the reactions of the people sitting at the dock when our dinghy would arrive & I'd ascend to the dock like a mini Queen Mary...

Two weeks before my due date of April 7th, I began taking Evening Primrose capsules & just 2 drops of Blue Cohosh in my morning tea. These were to get my body ready for labour & delivery. It was just a couple weeks before Easter & I had been joking with our choir director at church about using the high notes of the "Alleluia" Chorus we'd sing on Easter to send me into labour if I went over my due date... prophetic words... we rehearsed the piece on Palm Sunday (March 31st) & I went into labour that day! B was delivered vaginally in the birthing centre by a midwife at 2:17 pm, April 1st, 1996. Not bad for an "Elderly Primipara"- the medical term for a woman who has her first child after the age of 35!

We brought B home when he was 26 hours old, mostly because no-one was getting any sleep at the hospital. B was all mixed-up with his days & nights & cried when he wasn't being held (the time under the warming lights after his first bath was horrible), so I just wanted to take him home & get settled. We took him out 2 days later to the pediatrician to be looked-over (I nearly fainted because my milk had come in & my body wasn't certain yet how to divide the energy- milk or mom?) & discovered a bit of jaundice. But other than looking like a ripe, fuzzy peach for a few days, nothing came of it. Getting adjusted to this new, very strong personality in our lives was another thing entirely... just as you can't really describe labour adequately to someone who hasn't been there, likewise the acclimation to having a new baby in the home. The main thing was that we couldn't put him down- ever... C decided that B had a mercury switch that tripped when you put him in the bassinet or crib. If he was already sleeping, we could put him in the boat cradle C had built for him while I was building a baby, but if he woke up, he had to suck someone's finger to soothe himself & it was quite a contortion to hold one's pinky in the baby's mouth while trying to rock the cradle, all from a laying-down position in the bed next to the cradle! The midwives strongly suggested putting him in with us & pooh-poohed the stories of people rolling over on their babies. I compromised by putting a flat pillow between ours & putting B on that. The next scary thing was that he couldn't lay on his back- he just screamed! So, even though we were supposed to be putting him on his back to prevent SIDS, he was on his tummy all the time, or curled up in the baby sling. The first few months were spent either nursing him, feeding me, doing laundry, or moving from comfy place to comfy place- where I could put B on his tummy so he could sleep & be comfortable myself!

By the time he was 3 or 4 months old, we realised that we had a "high-needs baby" on our hands & turned to Dr. Bill Sears' night parenting books for sanity. I would walk past the crib & look longingly at it, but B didn't sleep in it until he was 5 months old. I hired the teenagers down the street to "wear" B in the sling in the afternoons that summer so my body could recover & I could get some things done. C was wonderful, too. He would walk in from his 12-hour day at the office, take the screaming child from me, & let me be alone for a while... what we learned a few years later was that B is lactose intolerant, which probably accounts for a lot of the colic & screaming. I tried changing my diet to see if it made a difference, but it never did & now we know why. Sigh. However, B thrived, grew, cheered-up some over the summer months, & finally he did sleep in the crib, although he woke up at least once every night & had to be rocked back to sleep every night until he was 2 1/2 years old! I am very, very glad we decided to take the night parenting route, though. Our pediatrician had encouraged us to "Ferber-ize" him, letting him "cry it out" until he learned to fall asleep on his own, but I just could not do it & neither could C. I am absolutely convinced that one of the reasons B is an "attached" child with Aspergers (meaning that he makes good connexions with other people & wants to be with people) is that we held him when he needed to be held & never made him feel insecure that way. B's psychologist agrees with me :)

B seemed to follow all of the early developmental stages on time, although he was somewhat uneven. For example, he learned baby signs ("more", "all-done", "food"- that sort of thing) when he was ~10 months old & was very eloquent in his use of them. He began walking at 13 months & never signed again. His vocabularly was essentially "no!" for that whole summer until he began talking at 16 months. It was at 18 months that I began to feel deep in my heart that something was "wrong" with B, mostly because he had so much trouble coping with transitions, was terribly fussy, & night-time sleeping was such a problem. He sucked his "binky" constantly & drooled so much that I made bibs from bandannas (folded in half triangle-wise with velcro at the back) so that they looked cute & less baby-ish as he got bigger. However- he was also charming & cute & mine- I have never forgotten completely my despair before he arrived. I have never felt that he was not worth it or I wish I'd never had him. It's so hard to imagine a life that isn't wrapped around him. C & I have always done fine on our own, but even with the challenges, B adds many good things to our lives & to those of the "village" that is helping us to raise him. A good place to end for today, I think!


At 4:54 PM, Blogger MOM-NOS said...

Lisa-Jedi, I have very similar feelings about our decision to cosleep with my son. In fact, I just posted about cosleeping and added link to this post. We're Unitarians as well... perhaps it's a UU thing? :) Welcome to the autism bloggers group!

At 8:23 PM, Blogger Lisa/Jedi said...

Wow! Thanks for your response MOM-NOS! It's great to "meet" another UU mom raising a child with autism. B & I were just this morning talking about how good it has been for our family to have the support of our congregation. We've been "out" there since B was diagnosed & I know it's been as good for our church community as it has been for us. Plus B is fully integrated into the Sunday School, allowing C & I some important breathing space (even if we are teaching other classes, it's still a nice change). Thanks for your warm welcome, too!!

At 5:43 AM, Blogger not my blg said...

Lisa, welcome to the blogosphere. My son Alexander has been diagnosed with high functioning autism and your story sounds very similar to ours. Read my post titled "Alexander's Story" which takes you up to the age of 26 months (last May).

At 10:52 AM, Blogger Lisa/Jedi said...

Thanks for the comment, alexander's daddy. I'll check it out. I am so glad to be in dialogue with other parents- our experiences locally with fellow parents of autistic kids has not been completely stellar (outside of people at school- they are great!) so it has not been easy to find a group to share with. It will be interesting to me to see how different your experience has been- & will be, with your son having been diagnosed so much earlier than B. Thanks for the welcome!


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