Dana Meijler is a working mom living in Amsterdam with her husband and 11-year-old daughter who has autism. As Dana and her husband both work outside the home, they have to be creative when managing the challenges of parenting a child with special needs, holding down two jobs and, occasionally, having fun. Through much trial and error, they have managed to piece together a life that works, and they use humor when it doesn’t. Here’s what a typical day looks like.
5:00 a.m. I wake up for some unknown reason and can’t go back to sleep. It’s an hour and a half before the alarm is set to go off. I turn over and try to close my eyes again, but damn, I am awake. Just as the clock is hitting 6:10 a.m., my eyelids start to feel heavy.
6:25 a.m. The annoyingly loud T-Mobile ringtone on my husband’s cell phone goes off. My husband says something, which I don’t quite catch, and goes to wake up our daughter for school. I turn over and wish yet again that I was independently wealthy and didn’t have to work.
6:30 a.m. My 11-year-old daughter crawls into bed next to me and silently takes my arm from under my blanket and puts it around her, giving my hand a kiss. Life with an autistic child is largely about routines. Predictability gives them security and security gives them functionality. I am a fly-by-the-seat-of-your-pants kind of girl so living within the boundaries of routine feels confining to me much of the time. But this routine is one we have been doing since she turned 4 when she stopped sleeping with us. It’s a routine I adore, and even more so since she’s gotten older and I know this won’t last forever.
That’s the irony of raising a special needs child; while on most days you would give anything if your child didn’t have to struggle with things that come so easily to other children, there are still small blessings everywhere, and you just have to want to see them.
6:40 a.m. The-I-wish-we-didn’t-call-it-this-but-we-do potty alarm goes off. My husband gets up and sweetly gets my daughter out of bed to go to the bathroom and then goes off to pack lunches and make breakfast for everyone. For the last year or so my daughter finally feels OK going to the bathroom in the mornings without one of us with her.
But going to the bathroom isn’t as straightforward as it might be for other 11-year-old girls. My daughter hit puberty early, at age 9, which means that among other things, we have periods to contend with. While the science is inconclusive regarding whether kids with autism (or special needs) tend to go through puberty earlier than their typically developing peers, there is at least some evidence of this (although it may just be part of a general trend and not specific to autism). In our case, I’ve thought of it as irony at work: my daughter’s body trying to overcompensate for her other developmental delays. I was heartsick when she was 8 and needed a bra. And as it took years for my daughter to potty train, the arrival of menstruation was something I dreaded; I didn’t know how she would cope with the responsibility. However, while she has struggled with this change in her life (as many girls do), mostly, she’s been a champ about it and that has helped me both come to grips with it but also to feel totally good about it, too.
6.50 a.m. My daughter is back from the bathroom, sitting on my bed. I start telling her to take her pajamas off and I have to repeat this 10 times before it sinks in. We used to just get her dressed, but now that she is older, we want her to do more for herself, so we talk her through it and help with things like buttons, snaps, and belts. Her fine motor skills delay still makes those things challenging.
6:55 a.m. She’s ready. No meltdowns; it’s a good day so far.
Ugh, not again.
My daughter is insisting that there is something upstairs that she needs to take to school, and N is trying to convince her otherwise, knowing that if she goes upstairs it will take ages to corral her back down and she will be late for the bus.
Many autistic kids (and certainly mine) have a very hard time accepting any other vision than the one in their own head. To those not familiar with autism, this behavior might come off as stubbornness or defiance (and when I am having a bad day, even I can sometimes see it that way), but actually it is rooted in something else. Autistic people often create, for various reasons, a rigid view of how things should be, which is why they need and often rely heavily on routines. Since the age of 4, my daughter has always been able to take toys on the bus and into school; the toys provided her with a sense of security that helped her to behave well on the bus and have something to look forward to during the day. This year, the school has slowly rolled back that rule, for a number of reasons. It’s been hard for her to let this issue go, so many mornings, I find her coming up the stairs to try and get the toy.
7.35 a.m. The bus is here and N and I are both trying, patiently but quickly, to get her out of her room. Any attempt to make my daughter hurry slows things down even more. Eventually, though, she’s on the bus and I make the sign to remind her to put her seat belt on. She blows me kisses, which I return. Boom! They are off.
Now, I have about eight and a half minutes to finish my makeup, get dressed, and get out if I want to get to the office on time.
[Work, work, work, blah, blah, blah]
2:45 p.m. My cell phone rings and it’s the school calling. I pick up the phone and it takes me a few minutes to realize what the teacher is saying (because she’s speaking in Dutch, and let me tell you, you just haven’t lived until you try to negotiate special needs in a foreign language). The teacher tells me that my daughter is having trouble listening today, and she has been to the timeout room four times already, which is a lot. The timeout room is adjacent to her classroom and it’s where kids go to decompress and do a puzzle, the idea being that the kid refocuses and can rejoin their group in a more open state (the puzzle serving as a distraction from the punitive aspect of a timeout).
I resist the urge to (again) tell the teacher that any form of timeout is ineffective with our daughter and never seems to bring behavior change. But instead of saying this in semi-broken Dutch, I suggest we have a meeting the following week to discuss the whole timeout situation and see if we can come up with a plan for our daughter that would work better than timeouts.
4:30 p.m. My husband and I start our daily afternoon tennis match. He calls me and we talk about when we’ll be home from work, what’s for dinner, what we need from the grocery store, etc. Many decisions to eat junk food potentially result from calls like this, when I realize I haven’t cooked earlier in the week and I don’t feel like going home and cooking. I try like hell not to make this happen, but it does sometimes. Luckily though, tonight we have leftover spaghetti, which we can eat on the side of some grilled chicken and sautéed spinach, which means dinner in under a half hour. Not bad.
Many kids with autism struggle with food, and while my daughter has some food-related issues (including texture issues; she won’t touch a tomato if her life depended on it) it’s not too terrible. In fact, she loves the taste of tomatoes, so I spread tomato paste on sandwiches for her and sometimes, she eats plain old (organic) tomato paste as a snack. We are lucky that she eats enough of a variety of food that she eats a pretty good diet overall (even though her medley of fruits and vegetables is not huge, the few she eats, she eats).
7:10 p.m. I walk in the door, and my daughter is already in the bathtub (we love our nanny). It took us more than a year to teach her how to brush her own teeth (and I still do it once a day for her to be sure her gums stay in good shape). Washing and conditioning her own hair is a sensory minefield, since my daughter cannot stand the feeling of soap or shampoo on her hands or body. Baths used to be filled with Freddy Kruger-type screams but slowly she has learned to tolerate them; doing it herself is a different story.
Since I am flying to London tomorrow for work, I know it’s my turn to make dinner because my husband will have to take care of it the nights that I am gone. I travel for work on a fairly regular basis (usually once a month for two to three days). My daughter has gotten used to it and deals pretty well (particularly since she knows gifts usually accompany business trips), plus Skype helps. It’s a lot harder when I have to go away for a week or take long-haul trips across several time zones. My daughter tends to be clingy and less focused then, and often, meltdowns return. Luckily long-haul trips don’t happen too often.
8:30 p.m. My daughter crawls into my bed with a sticker book and asks me to look at all the pictures she’s made. Slowly, she starts telling me about her day. It took my daughter years to make a real friend, and socializing is something that is difficult for her. Her two friends, K and L, were hard earned, and it took a long time before they crossed the zone from being in the same proximity to being actual friends. This year, my daughter finally realized how much better life is with your besties, and while she’s not with her friends because we chose to place her in a smaller class that affords her more personal attention, I really hope she makes it back to her class next year so that she can be with K and L again.
8:45 p.m. I know that I should be getting my daughter into her own bed, but she is lying next to me and holding my hand so sweetly that I resist the urge to tell her it’s bedtime. Even though she’s already 11 years old, cynicism and fear have not invaded her emotional landscape and she freely shows her emotions. She will think nothing of telling my husband she loves him in the movie theater or stopping a game of marbles with other kids just to come over and give me a kiss or to shout I love you sweet-beautiful (which is her nickname for me).
My daughter’s no-nonsense and literal approach to life both keeps us in stitches and reminds us almost daily how as human beings, we often add too much complexity to many things and that simpler is almost always better.