The chaos and mania of parenting a child on the spectrum

Aspergers: To Tell or Not to Tell?

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I have always told people about my daughter’s “issues.” I hate to phrase it that way. I know I may be doing her an injustice by broadcasting her personal struggles. I know that once it is out there, it is impossible to reel it back in. I was warned early on by a girlfriend that, “People will have expectations now,” and understandably they will not always be good ones. But I have always felt the need to tell people anyway. In the beginning it was because we needed help. Now it is sometimes for understanding, and at times as a warning. I am not apologizing for my daughter, as another friend insinuated. I am protecting her. And myself.

Part of this developed when she was just a baby and I had to tell anyone who would listen. This wasn’t something the school presented to us, or the doctor. I had to convince people. My daughter’s physical disabilities and delays were so obvious from the start…to me. I saw them at just two weeks old. I saw them…not the doctors. I have had to advocate ever since. And I was always self-conscious about them. My daughter is a twin, and my older son was just a baby himself, barely twenty-one months when the twins were born. We were a spectacle indeed, wheeling around in a double stroller, with my older son sometimes perched on the top like a hood ornament, blocking my view. I got a lot of, “Well, you’ve certainly got your hands full,” and “How close are they?”

As they grew, or I should say, as my boys grew and my daughter failed to nurse, failed to swallow, and dropped quickly to the low side of four pounds I got a lot of concerned and skeptical looks. I actually had people quiz me on their ages, looking at her twin brother, a full, robust, two pounds larger, round cheeked and alert, and my daughter’s alarmingly thin, scrawny body, head just slightly too small, arms and legs meek and rather slack. I could see the concern in people’s faces. Even they knew something was off balance. “They’re twins?” people would ask incredulously, not bothering to disguise the alarm in their voice. “But she is so much smaller,” they would say, as if I hadn’t noticed. This happened often. And no one seemed to pay attention to the pain in my face when I snapped that yes, they were twins. And they were different people. “But she’s so small,” they would insist. The judgement clear on their faces.

The first people I pleaded to were the doctors, who decided first that I was simply “overwhelmed,” when I told them that she screamed and cried a lot. “You have twins. There’s bound to be a lot of screaming. Ok. Then they said it might be colic. Or that I wasn’t making enough milk. Or that I wasn’t giving enough bottles. Or that I was giving too many bottles and not enough food. I had to argue, and fight, and explain even to the Doctor that condescendingly informed me that there were only two reasons why a baby doesn’t gain weight: either that her caloric output was exceeding her caloric intake or that she wasn’t receiving enough calories, period. Basically I was either starving her or making my eight month old exercise too much.

That was the final straw, but on one visit when I explained that my husband had to travel more now since the twins were born than he ever had, she looked at me skeptically over her clipboard and said, “Really?” Causing me to wonder if my husband was not traveling for work, but was secretly meeting up with a colleague in some resort love nest. It was not what a sleep deprived, nursing mother needs to have brewing in her head. It was far from helpful. When I had failed to have my twin boys haircut (he was beginning to look like a baby hillbilly) she said, “Good afternoon, girls. I mean, sir,” staring pointedly at my son’s hair. I quickly realized that if even a pediatrician was going to have judgements, than certainly everyone else would.

I had to switch pediatricians.

I even had to argue with my husband who didn’t want to accept that something was going on with my daughter, nor could he fully cope with it, having just been promoted to a higher position that required 80 percent travel. Now that I was a stay at home mom with three babies, and an estimated over two thousand a year in diapers, we desperately needed the money. He didn’t not want to hear that I wasn’t handling my end of the bargain. He couldn’t understand why I was suddenly falling apart, why I couldn’t handle anything, and why I kept insisting our daughter had autism. I think he believed that I had post-partum depression. One of his female colleagues actually sent an article to me about learning how to accept a father’s unique role in parenting. I have, for the most part, blocked out those dark days, but I wish I could remember her name, or hadn’t promptly torn up her “friendly” letter, because I would love to track her down today. (My husband has since left that company and insists he doesn’t even remember her name). They were dark times, and everyone seemed to judge, even family.

If there is any upside to the significant delays that followed it is that it became evident to everyone that I was not just a crazy, raving hormonal female. Now everyone tells me it must have been my motherly instincts, which annoys me just as much. Instinct had nothing to do with it. It was observation, experience, and hands on work. I was her primary caretaker…how could I not know and understand the details of her development?

Not every child on the spectrum presents with difficulties early on. Some develop normally physically. Some of my friend’s children didn’t present with difficulties until pre-school. Some could read at the age of two. Some were speaking in full sentences and introducing themselves to people. Some had diagnoses and instantly gained access to services. We had early intervention and private therapies, but no one could pinpoint exactly what my daughter had. That doesn’t mean it wasn’t’ there. It doesn’t mean I was wrong. People ask me, “What do the doctors say?” Which again, makes me crazy. If the doctors don’t know, they assume I must be wrong.

But I am not wrong. No one knows exactly what my daughter has. No one knows what to call it. I know, however, that when she throws a tantrum at a birthday party because she doesn’t get a pink balloon that people or going to judge me. Or when she is barreling towards the bathroom at dance class and I go ahead and try and beat people to the open door it is because she can’t hold it, not because we are inconsiderate. When she cannot do a cartwheel or a hand stand, I am going to tell the teenager working at the gymnastic center that she needs extra help. When the crafty mom at school is holding a cupcake workshop at school, I am going to tell her my daughter needs extra insistence. When my daughter pushes a friend on the playground, when I see the mom I will apologize and tell her that my daughter is working on social skills. Because people are always going to judge her. And me.

Except now they’ll have all the information. Will I tell people forever? I hope not. I hope I won’t have to. I know that soon my daughter might start asking me, and I wonder how I can justify telling other people and not telling her. I am hoping that eventually struggles will become quirky. And quirky will become unique. I’m hoping, eventually, she will just be.

For now, I tell.





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