Married life with FASD and blindness
©2002 Heather Davis
"What did you say?"
"Normal people don't do that."
"God, this place is a mess! When are you going to pick up?"
My whole life, I have had extreme difficulty relating to other people. I've always managed to say just the wrong thing, killing off potental friendships before they could even blossom. The few friends I did manage to keep were even stranger than I was, and the whole time I never knew why.
I just couldn't seem to get the social rules of contact - what was appropriate to say, when, and for how long. Tone of voice, volume, and other things that most people manage without a second thought have to be given serious consideration. Many times I have made comments that horrified people - little realizing just how inappropriate they were. Once, I mentioned to a lady that her baby looked just like my husband.
I was very lonely. I had an abusive family, as well, so I spent most of my free time reading, holed up in my room with my plants, or wandering the mall alone watching the other groups of kids laughing and having a great time.
I got involved with a few guys - we never actually had sex but the relationships were "inappropriate". I was even "engaged" to a fellow student at age 14, and we'd planned to run off together at age 18. I didn't want to wait until marriage, either, HE was the one who said no!
Then I got a job. I did quite well at it, considering my disability (which I didn't even know about for another 10 years). I had a uniform, so I didn't make any "dress code" mistakes (those would come later, when I wore shorts and a tank top to work on a hot day). The training materials were all written, so I picked it up much faster than I would have with a verbal introduction to the job. Of course it was a great way for me to get out of the hell that was my home (and boy was I motivated) so I made a budget and stuck to that too (so far, I'm ahead of the crowd - I'm pretty high functioning for an individual with FAS/E).
When the time came, I moved in with the man who later became my husband. He knew I was "different" but he adored my soft, childlike approach to life. I'm the kind of person he could be himself around; and I helped him manage his disability as well as he later turned out to help me manage mine. You see, he's totally blind.
When Ron was born, the doctors told his parents he had congenital glaucoma. He was fortunate, in that he had several years of vision before he went totally blind, yet he went blind young enough that adapting wasn't a problem. He'd climb trees, ride bicyles, and play stickball with the neighborhood kids. His parents are very outgoing and social, and taught him the best social skills I have seen in my life.
Married life turned out to be quite a shock. The apartment disintegrated into chaos, and Ron was constantly screaming at me to clean up! I didn't know where to start, and would make a stab at things for a few hours, just to give up in despair. We'd try different approaches, but nothing seemed to work.
Later on, Ron confessed that when it came to social outings, he was afraid to leave me alone for fear of what I might say. My social skills were dreadful, yet in private we communicated fairly well. Sometimes I'd get overemotional and cry in public, necessitating a frenzied nose-blowing and eye-wiping session. Other times, I'd overload and lose my temper, shouting "like a teenager!" he'd exclaim. Little did we know.
All I knew is that more and more often, I'd see that jaw muscle clenching as he struggled to understand me. "Something's wrong!" he'd say. I'd either deny it tearfully or angrily agree that yes, something was wrong so whatever it was that had angered him wasn't my fault.
"Normal people don't do that!" ... The last time we heard that I had tried to reprogram his cell phone as we rode in a taxicab. I was so focused on the phone I lost track of our location, and we ended up going a mile out of our way. All I knew was that I could handle one or the other, but not both.
Poor Ron was being driven batty. I was like Jekyl and Hyde, he swore. He just couldn't take it. Maybe, in fact, we should consider a seperation. My mood swings were too erratic, I couldn't handle "normal" stresses, and he was on his last nerve. Maybe I just needed "help", but we couldn't afford therapy.
My mother called that night, drunk (as usual). I hadn't heard from her in years and the first words out of her mouth were a tearful apology; "I didn't know, honey! Can you ever forgive me? I just didn't know!" I tried to get more sense out of her, but all I could determine was that she'd spoken with my dad and stepmother, who had had custody of me since I was about 5 years old.
When I was a teenager, I'd had a lot of problems in school, and had extensive testing done. I was not allowed to read the test results, nor was I notified of my diagnosis.
As Ron and I puzzled it out, he finally put the pieces together: Mom is an alcoholic. She was very sorry. For what?
"Heather, look up Fetal Alcohol Syndrome on the 'net". The rest is history, the description of the "average" FAS/E consumer matches me to a "T". A heated phone call to my dad confirmed the diagnosis.
How to deal with it all?
First of all, once Ron understood the reasons behind the behaviors that drove him nuts, he became much more empathetic. Being disabled himself, he knew all about trying to cope with a disabilty. Instead of playing "blame games" we began to look for solutions together.
We did a lot of research, and came up with some pretty practical techniques:
Problem: Job difficulties - couldn't fit in. I've lost jobs over making the wrong comment, not making the right one, or just being too literal. I have great skills, but just can't play the game to others' satisfaction.Ron has also begun to note the "warning signs" of what we refer to as a "Pickle attack". He will put his arm around me, comfort me, and reassure me that everything is OK. Then he'll give me a hug. After a few minutes, I'm OK again and ready to face the world. We also limit the stimuli when I am working on a project/thing that may "Set me off". It's very helpful.
Of course, learning that I had a neurological disability helped us tremendously. I feel so much better about myself, and I know what while I may not have a full deck, sometimes all you need to win at poker is a pair of kings.
Read Heather's update story: "Losing My Better Half"