My ten-year-old daughter with Asperger's syndrome just got her period. When my daughter was diagnosed with Aspergers syndrome several years ago, I only thought so far as the toddler/elementary school years. Everyday things like getting dressed and playing with other kids were already such challenges, I just couldn't wrap my head around what would happen when my daughter, you know, becomes a woman.
This is Offbeat Families's archive of Tough Stuff posts.
With the birth of our son we joined the ranks of that undefined, amorphous, limitless group of "special needs parents." Within the first days of the NICU I knew there would be challenges, but I could not ever imagine the constituency of belonging to such a group. A stat perhaps. A label. A stigma?
Then I met him. He was a young man, not without his own faults. We saw in each other a solace. He didn't save me, but through his love and kindness I learned there was a different way to view the world — a manner of seeing, of feeling without shame, of expressing my love without fear, and love him I did.
Connecticut mandates that all couples with children who are seeking a divorce attend a series of parenting classes (not together, thank GOD.) The classes are intended to offer advice for co-parenting post-divorce. These classes were long. And often boring. And filled with a lot of "Well, duh" information. But I learned a few good tips that I assumed I would never use because I was certain we would never be able to effectively co-parent.
It started when my son decided he wanted cupcakes. I figured we'd make cupcakes and take them to work for our friends. I gave him one of my aprons but it was too big. The next week at the local farmer's market I spied homemade kid-sized aprons. They had some robots and some flowers, but what really caught my eye was, of course, a Dora apron. It is bright pink and lacy but whatever — that's not something that would register for Isaac.
My parents have been foster parents for the past 12 years, and by extension my siblings and I have been foster siblings. It hasn't always been easy — there has been joy, lots of pain, and laughter. Over the years we have had over 80 children. Some for a night, some for a weekend, some for a few months and some for years.
I think having a child with a disability is similar to learning how to run. We line up and listen to a whole lot of people tell us what we should do. Sometimes we hear them. Often we don't. They are usually talking from their own experience anyway and only slivers of what they say will have real applicable value to ourselves. Then we run: we try and try and try and try.
One Saturday night I was just suddenly extremely sore in my lower abdomen — because of some historical gastrointestinal issues I assumed it was just a really bad case of bloat. Then it went on for the entire week. I made some drastic diet choices. I cut out dairy and anything with bubbles or that's known to cause gas at all. I consulted Dr. Google and tried every ridiculous thing I found in forum posts or on Web MD. Meanwhile my husband got more worried by the day and gently urged (read: tried to load me in the car while I was sleeping) me to go to the doctor or the emergency room. I was so sure it was something benign that I refused to listen to reason.