Archive for February 2011
When I first started this blog, I imagined that my only readers would be my friends and family- those who were curious about Pudding and autism, but didn’t like to ask. I wasn’t expecting to become part of a community at all, so imagine my delight at becoming part of two: the autism-mama-blogger community, and the Foreign Service blogger community. Pretty amazing for someone feeling the isolation of being a foreign-born spouse on a domestic tour, and the isolation of being a special needs stay-at-home parent. I joke that blogging is the alternative to therapy for those who can’t afford it, but I can’t quite bring myself to laugh.
Both of my communities have their share of hardships, and I continue to be amazed by how strongly I can feel for people I’ve never met. I’m often at a loss to know what to do to make things better; sometimes all I can do is read a person’s story, and sometimes tell mine. My husband’s colleagues around the world and their families are going through some extraordinarily difficult times. They aren’t my stories to share, but later this week when they are collated into a Round-Up, I hope to link you to them. It is hard to imagine that in the midst of such turmoil and trauma, we don’t know if we’ll get paid next month. Oh, and on top of this, there are moves to eradicate locality pay for State Department employees overseas, but not for any other agency of the US Government. Our family is already living paycheck to paycheck, I don’t know what will happen.
Communities are not all about suffering and hardship though. I’ve made some incredibly supportive connections as being part of these communities. Another unexpected thing has happened, I’ve made some friendships. A couple of weeks ago, I got to meet the lovely Jen for coffee, who is just as great as I imagined her to be. It is quite surreal to meet someone in real life who you have only known virtually, but I’d referred to her previously as a friend I hadn’t yet met, and now I have. We’re going to get together again soon, this time with the kids.
In May, I’m going to meet my sister-from-another-mister friend Alysia. Every time I read one of her beautiful posts, I’m amazed at her ability to capture my feelings in her words. Though I’m still a few months from meeting her, we’re already friends. We decided a few months ago that we had to meet before I skipped the country. I’ll also get to meet Varda, another awesome Hopeful Parent writer who writes incredibly powerful posts drawn from her life. I can’t wait to actually meet these wonderful women in person.
That is the thing about virtual friends, they can become real ones too. Our shared experiences bring us together. My heart goes out to all those dealing with earthquakes, evacuations, drug lords and dictators. Just as much it goes out to those who struggle to connect with their children, who are braving up to a new diagnosis that changes their world, to those dealing with the ongoing pain of watching their loved one fail to adapt to a world that doesn’t understand them. We’re in it together, bruised but still brave.
I might get to meet some more of you, one of these days. Until then I’m right there with you. We’re virtually friends already.
She had joined me in bed again. I don’t know how many nights in a row this is, too tired to count now. Always between 3 and 4 in the morning. I’ve tried to figure out why, but I can’t come up with anything. It just appears that there are cycles of sleep problems, and we’re riding one right now. She no longer calls out, or announces her presence, she just presents herself at the side of the bed, until Daddy gets out, and I wearily take her in. Sometimes she goes right to sleep. Sometimes she fidgets, and neither of us get our rest. After a while, Cubby joins us. My sweet, exhausted husband leaves me a cup of tea as he heads off to work.
I need my transition. I urge the kids to go to their rooms, but they stay. I sip the tea, trying not to spill as they bounce all over the bed. Cubby is only content in my arms, making tea-drinking impossible. In the end, I give up. I place the cup back down on the bedside table and it goes cold while I wait for them to let me be for a moment. I get out of bed, and the day begins.
Hours later it is time for the day to end. I’ll have my second cup of tea once they are in bed. My other bookend to the day. My ritual. Cubby is winding down, but Pudding is still active, hyperactive. We need her to go to sleep tonight. Her Daddy has volunteered for an overnight shift, and he needs to take a brief nap to keep him going.
She isn’t in a cooperative mood. She demands, then refuses a story. She gets into bed, but tosses and turns, hums, and twirls her hair. I’m thinking of that cup of tea. How much I need it, my wholesome vice. Why won’t she just sleep? Almost an hour later, I give up. I tell her to go to sleep and head downstairs.
I start to clean the day’s mess. Even before the kettle has boiled, she is downstairs. I march her back up and place her back in bed. I just want a few minutes of the day to myself. I refuse to hear her pleas to stay, and return to pour the water onto the teabag. It steeps, I add milk. I’m ready to sit down.
She returns. I lead her back up to the bedroom. Exasperated, I ask what is wrong, but she doesn’t reply. I ask what she wants, and she replies: Mummy. I’m humbled by her need. She wants me to get in bed with her, being downstairs is not enough, sitting on the chair in her room is not enough. Only physical contact will soothe her. I climb in beside her, and cup her cheek with my hand. I lie still while my tea is going cold. Her breathing slows, and I move my hand away. Instantly alert, she grabs my arm and holds on, keeping me close. This isn’t manipulation, this is desperation.
I submit and stay, knowing that the tea will be undrinkable. I can only hope this will pass. That one day she will be able to calm herself when she feels like this. Until then, I can meet her need just by being present. I’m grateful that I can still provide all that is needed.
I watch her chest rise and fall before I dare make another retreat. This time she didn’t stir.
Nothing to do but come downstairs and pour away the cold tea. I’m about to make a fresh cup. My needs are also mercifully easily met.
I suppose it started a few months ago. Pudding, being the sharing soul that she is, decided that anything she didn’t want was to be given to Cubby. It happened whenever I served some food she didn’t like. Cubby wants to eat it. If we tried to get her to do something she didn’t want: Cubby’s turn. Conversely, of course, we would hear Pudding wants to try that and Pudding’s turn if she wanted to do something. It kind of evolved into the shorthand of just saying his name to push attention away from her. He was the scapegoat.
Cubby, though, is no sacrificial victim. He is coming into his own person. An interesting blend of sensory issues and precocious language. He stands up for himself, defiant to his big sister’s wishes- no mean feat given that she is about twice his size. He tells us he doesn’t like it, doesn’t want to, afraid that I’ll make him eat a second portion of carrots, or whatever drama the women in his life have concocted.
Sometimes, though, he wants whatever is on offer. The thing so heinous to his sister is just what he desires. His motor delays are much milder than Pudding’s so many of the tasks we work on are pleasant for him. We treat them the same though, so if I reward a challenge for Pudding with a candy reinforcer, he gets one too. At these times he is a very willing accomplice. I call him The Motivator.
Yesterday the OT assigned Pudding some yoga poses as homework. They are just basic animal poses for children, but it is really difficult for her. She lacks the strength, coordination and endurance to make yoga enjoyable. Of course, these are the very benefits that yoga brings, so we have to keep trying. She couldn’t be persuaded. Spectrummy Daddy and I tried to manipulate her body for her, but she would deliberately move as soon as we let go. Even the promise of a pink Starburst made no impact. The more we persisted, the more frustrated she became, until she whined Cubby’s turn, Cubby’s turn, Cubby’s turn, over and over.
Cubby dutifully wandered over and announced it was his turn. I demonstrated the pose, then we helped him to do it. Immediately we rewarded him with the candy. Pudding was apoplectic with rage. We gave away her candy! I asked if it was her turn, but she continued to sulk, but Cubby piped up to do it again. He did another pose, and was awarded another treat. This time it registered with Pudding that there was only one way to get the treats before her brother took them all.
She complied, and actually did a lot better than I thought she would. Although we still had to help her put some limbs in the correct places, she maintained her body position for the full 20 seconds, even counting herself. As soon as she was finished, The Motivator was ready and waiting for his turn again. Inspiring his sister to strengthen her body, and take turns: The Motivator might just be the most useful instrument in our ensemble.
When Pudding was first handed to me in the delivery room, her tiny hand reached out and grasped onto a lock of my hair, and didn’t let go. This was the beginning of her love affair with my hair. Any time she nursed, her hand would reach up, and grab hold. I’d joke that she was making sure her food supply didn’t wander off. If I carried her, her fingers would lock on. There was something primeval about it, clinging on gave my newborn a feeling of security in this confusing world. I didn’t mind.
That changed. As the months passed, it became clear that she was very dependent on my hair. She needed to hold onto some to go to sleep, or while nursing. She was strong, and I got tired of having my hair pulled all the time. I knew nothing of sensory processing disorder at the time. All I knew is that she had a thing for my hair, and I didn’t like it. I’d put my hair up in a pony tail to keep out of her way, but then she started moving on to other people.
Any woman with long hair was her target. Time after time I’d pull my toddler off unsuspecting strangers, hoping that one day her sense of boundaries would kick in. As she got bigger, other kids became her preferred victim of choice, as she could tower over them and touch their hair easily. Of course, if they tried the same, she would hate it. Only she was allowed to do the touching. I didn’t think that was particularly unusual at the time, but I tried to intervene, and give her dolls with hair to pull and twirl.
Finally her own hair started to grow in. Just before she turned two, she finally had enough of her own hair to play with, and she would stretch the same piece out, and smooth it over with her other fingers in a bid to get to sleep. She touched my own hair much less often, and began to leave her friends alone too. Occasionally she would meet a stranger with long or interesting hair, and her old compulsion to touch it returned. Once she had done so, she was sated, but she needed to get her fix first.
After we moved and her hair continued to grow in, she developed a habit of twirling a section around her fingers. She continues to do that to this day, and when she is particularly overwhelmed, she moves back to my hair, the original source of comfort.
Cubby has developed a similar habit. Mercifully he never had the same interest in touching other people’s hair, but he adores mine, Daddy’s works in a pinch too. His sister will occasionally let him play with hers, but she has to be in the right mood for that. Several times a day his hands wind up around my tresses, and his tiny nails scratch my scalp. I feel like an ape being groomed. Just like Pudding, his hair has taken a long time to grow in. Only now does he have enough hair to be content to play with to go to sleep, though he still prefers mine. I’ve tried to cut his hair so he still has enough left to pull. Admittedly, it looks a little strange.
This hair-pulling or twirling is one example of a “stim”, or self-stimulatory behaviour. Hair-twirling is a very common habit, especially for young girls, but like hand-flapping, humming, running around in circles, or bouncing up and down, its purpose is to provide appropriate sensory input to calm and regulate, and ultimately cope in a disordered world. One of Pudding’s therapists mentioned to me that she didn’t like Pudding’s hair stim, to which I responded that she didn’t have to. She has the ability to twirl her hair and do other things at the same time, so I see no reason to stop her at this point. This particular stim is about as typical as Pudding can be. Removing it would likely cause a replacement stim to begin that might be much more socially unacceptable, and potentially harmful. Instead I advised the therapist to instead reward the use of two hands for an activity if necessary.
I can think of no better way to encourage her to pull out her hair until the point of baldness, than to make her stop touching it. Though well-intentioned, preventing a stim can be harmful. My girl needs all the coping methods she can find, and a replacement may be more stigmatizing, or even harmful. Hair twirling we can live with, though I may need to order a wig just in case she ever wants to move on to other people again.
During this, at times nasty miserable winter, we’ve developed a routine of watching movies together on the couch. We’ll put on a princess movie, or a Pixar, make some popcorn and settle down to enjoy it. Then after about twenty minutes, Pudding will get restless or bored, and wander off. Cubby follows moments later. Spectrummy Daddy and I stay and enjoy the film though. Every time one of the kids makes a request to watch something, we concede, thinking that this time they will stick around a little longer.
The weather has perked up lately, so we’ve been able to spend more time outdoors, and our movie times have dwindled away. Even if they made a request, we found something else to do instead. On Saturday we got home mid-afternoon with no real plans. We sat on the couch, Pudding skipped up to us, looked Daddy in the eye and said.
I want to watch Star Wars. May I watch Star Wars please?
She’d never watched Star Wars before. Her only exposure to it is watching Daddy and I play Lego Star Wars on the Wii (I’m surprisingly blood-thirsty with a lightsaber) or looking at Cubby’s or Daddy’s many Star Wars t-shirts. Cubby showed early interest in Star Wars, one of his first words was AT-AT, and he loves wearing that t-shirt and his “yoga” one. Pudding, on the other hand, has expressed no such interest until recently. Daddy tried to lure her into watching on a couple of occasions by telling her there was a princess, but to no avail. Then one day she came up to me and told me that her brother wanted to use The Force.
Her Daddy of course, loved it. He is a huge Star Wars fan. So when she made the request, he dashed to make it happen for her. I tended to the popcorn, and they settled down. And once again, after around 25 minutes, she trotted away. Only this time, I noticed that she became uninterested at the exact time the popcorn ran out. I’d never realized before that there was a direct correlation between the end of movie snacks, and the onset of boredom.
I deduced that Pudding simply wanted to eat popcorn, and knowing that a request would be denied, she made one that her Daddy couldn’t refuse. Star Wars. Manipulating another to get them to do your bidding, is a special kind of power. A power that can used for good or evil. In a galaxy far, far, away, or on the couch.
I call it using The Force.
This post was originally published here for Hopeful Parents.
We’d prepared for our visit to the optometrist in every way I could imagine. I took her to the office the day before the appointment. We met all the staff, apart from the eye doctor himself, who was out of the office. I’d looked for a photo of him on the web site, but there was none. Instead, my social story had to feature a cartoon optician.
We got to the office early. Too early. The toys provided in the waiting area barely captured Pudding’s interest for a few minutes. Then she skipped around the room, touching everything. Even when her curious, sensory-seeking fingers weren’t trying to touch every single pair of glasses, she constantly ran the risk of falling into the displays. I was already out of patience when the appointment time came and went without our being called.
Finally a very elderly man walked in. Spectrummy Daddy and I managed to contain both kids in a corner. Waiting while our kids caused mayhem would be even more unbearable with a disapproving observer. The receptionist helped him off with his jacket, then replaced it with a white coat. He was the doctor? Oh no. He was old enough to be Pudding’s great-grandfather. How was someone so ancient ever going to be able to deal with the boundless energy of my hyperactive child. I cast a horrified glance at my husband as we were summoned.
The calm and patient mother Pudding needs me to be was gone. In her stead was my irritable alter ego. I hissed commands at her. Stop moving. Don’t touch. Be quiet. The trinity of things that she can’t control. Everything I did made it worse, which made me more angry. All that preparation was for nothing.
We got her into the “princess throne” for long enough for him to determine that she has a slight astigmatism in both eyes. Then she’d had enough of cooperating. Every word I spoke agitated her, but the optometrist remained silent, and calm. Had I really judged this man? Don’t I get mad about people doing that to my girl? I’d decided that he would be cranky and intolerant before he even began. But just look: that described me, not him. I added shame to my negative whirl of emotions.
As I stood there wondering what my next move should be, the optometrist moved a spinning light-up toy over and around my body. Pudding was entranced.
He told me to watch her as she tracked the toy with her eyes in a smooth motion, her head perfectly still.
“She’s amazing. She has to make so much of an effort to see, but she follows it better than most people that come here. I’d like to work with her, she’s really great.”
He asked me how I felt about trying vision therapy with her. Honestly, I’d found that afternoon so trying that I was filled with dread at having to return on a regular basis. But that was due to me, Pudding was fine until I’d lost my composure. I’d looked at this man, but I hadn’t really seen him. Yet here was my girl at her worst, and he could still see the best of her. We need him on our team.
He tested me too. I’m short-sighted, but getting less so as time goes on. I couldn’t agree more with that assessment.