Archive for April 2012
As I’m sitting here wondering what to write to you, I can’t help but smile at the contrast with my own Aspie. Pudding is just five, and she is twirling in front of a mirror saying, “two Puddings.” In her mind, the only thing better than Pudding, is there being more than one of her. How right she is.
I wonder if things will change, if she will change. If she views the many ways she is unique as a burden, rather than a blessing. If there will ever be a time she types, “I wish I didn’t have Aspergers” into a search engine, just like you did. If she does, I’ll feel like I lost.
I’ll feel like I lost my chance to show her all the many ways the world is a better place because she is who she is.
I’m not diagnosed with Asperger’s. I’ve never experienced the many ways your life is profoundly more difficult than mine. But others have. They’ve experienced a lifetime of misunderstanding, ridicule, humiliation, and even abuse, and have taken it upon themselves to change things. Because they know they don’t need to change, but the world does.
There have been some victories- efforts that have resulted in greater understanding, support and inclusion. But there is a way to go. Advocates and their allies are pressing on for greater awareness of alternative communication methods, sensory processing differences, the need for improved housing, education and support for autistic individuals throughout the lifespan.
You have to know that you are worth these efforts. You have to know that the world is changing because of an incredible community that you are part of, because you have Asperger’s. You are not alone.
The next time someone googles “I wish I didn’t have Asperger’s”, they’re going to find a whole community of support waiting for them. Because of you.
The only thing better than you, is more than one of you. Just ask my girl.
For the last day of Autism Awareness Month, I’m taking part in the Autism Positivity Day Flash Blog event. This Autism Positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue. You can find out more by clicking >here<.
Please like, retweet, email, and generally share this amazing effort to raise awareness about the supportive and encouraging side of our community.
Pudding came into my room this morning, on her tiptoes, and spun around in a perfect pirouette. Well, perfect to me anyway. Then she performed her signature arabesque. With her predilection for pink, long slim body and gamine features, she appears to be suffering from a common disorder: ballerinaism.
Ballerinaism affects many girls (and some boys) throughout the lifespan, but reaches its peak in children aged 5-7. Symptoms include a fondness for taffeta and being painted by Degas.
Actually, Pudding doesn’t really meet the criteria. She dances to her own music this child, and hasn’t shown any interest in ballet or any other kind of dance. But if she were to be overcome by this syndrome, we’d be treating her with a tutu and scrambling to find a ballet teacher with an interest in the inner grace of a child with serious balance and coordination problems.
I’m being ridiculous because recently we have dealt with the possibility of Pudding being diagnosed with yet another -ism, which mercifully didn’t turn out to be the case. At an appointment, Pudding’s doctor focused on her height. I’ve mentioned before that Pudding is tall, but it turns out she is even taller, relative to her contemporaries, than I’d even imagined. Her doctor was afraid she may have a tumour on her pituitary gland, which is the cause of giantism.
Giantism. Pudding turned 5 in December, and I guessed her to appear about two years older than she is. In fact, she is still off the charts for a 7 year-old girl, and measures in at slightly taller than the average 9 year-old. The doctor took several measurements of body parts and ordered blood work, because in her words, “It doesn’t do to be too different when you’re five.”
A tiny bit late for that!
Now, I could tell you about the tribulations of a child who looks so much older, but is developmentally so much younger than her real age. But of course, those troubles would pale into comparison if in fact we’d added this diagnosis to our collection.
A blood test revealed that her human growth hormones are slightly elevated, but within normal limits. We could be looking at yet another growth spurt, but she is just incredibly tall. If any modeling agency would like to hire a supermodel who only wears pink and Hello Kitty, I’ve got your muse right here. Unlike Naomi Campbell who wouldn’t get out of bed for less than 10,000; my girl won’t stay in her bed for anything we’ve tried thus far. I’ll be her agent and manager.
Eustacia Cutler famously said of her daughter (Temple Grandin): “Different, not less.” With Pudding it has always been different, and a little bit more. But we love every extra inch of her. Having said that, she has just grown out of another dress size, so if you have any hand-me-downs we’ll be glad to take them. Especially if you have a tutu- I haven’t entirely ruled out ballerinaism yet.
Not me, wise Maya. Not me. But I do make new mistakes in different ways. And I do believe entirely in making mistakes.
When I was that insanely annoying woman who thought she knew best about parenting (before actual motherhood taught me all I needed to learn) I knew I wouldn’t let Pudding have a dummy (pacifier). Then more information came out about how dummies actually helped reduce the risk of S.I.D.S and I quickly changed my stance. We would have pacifiers, but would give them up before long.
I admit to being a bit of a dummy back then. I never picked up on how soothing a pacifier was to Pudding. Oh, I knew that it could help stop the screaming when I couldn’t figure out what caused the screaming, but I didn’t see her intense need for oral-motor stimulation.
I stopped Pudding having her dummy at just after 18 months old. Pudding gave up the pacifier without any difficulty, and I’m sure I congratulated myself well for it at the time. I certainly didn’t respect how much more difficult it would make things for a child with intense needs and difficulty communicating.
She began looking for other things to put in her mouth: crayons, play dough, anything she could find really. Pudding had pica, a disorder causing her to eat non-edible items. We were lucky that she never did herself any serious harm, though I made more phone calls to poison control than I’d have liked. That oral-motor sensory-seeking continues to this day, though more often than not she can be persuaded to bite on chewelry.
So the second time around, when I knew better, I did better. I would avoid the dangers of pica and compulsively mouthing non-food items by allowing Cubby his pacifier as long as he needed it. And he needed it. Unlike Pudding, whose sensory system was under-responsive in her early years, Cubby was born sensitive and anxious.
He lived with a pacifier in his mouth. I struggled to persuade him to use it just for sleeping, and from a very early age, he would hide them around the house. Pudding took it upon herself as a sisterly duty to ensure that there was a dummy in his mouth at all times. In fairness, his crying distressed her greatly, so consoling him would be soothing for her too.
Cubby has never experienced the pragmatic language delays that impair Pudding’s verbal communication, but as time has passed, I’ve noticed that it is increasingly difficult for others to understand him. During OT we’d work on his oral-motor strength with blowing and sucking activities, but his low muscle tone seemed as pronounced as ever.
On to his third birthday party, where he didn’t have the strength to blow out his own birthday candles. I made an appointment for a Speech and Language Assessment. Now, only part of his articulation difficulties are directly caused by the pacifier, but using the dummy has certainly contributed. With tongue thrust, swallowing difficulties and weakness of the orofacial muscles, it became clear that intensive efforts would be needed to help with his articulation. The dummy had to go- immediately, and speech therapy sessions twice a week are the order of the day.
Cubby didn’t give it up quite so easily as his big sister, but he hasn’t made mention of his dummy in a few days. I’m confident throwing them all out once and for all. It is interesting sitting through another set of speech therapy sessions with another child, and working on completely different problems.
I’ve chastised myself for my leniency with the pacifier this time, just as I berated myself for the strictness that contributed to Pudding’s pica and sensory seeking. But really, even the wisdom of Ms. Angelou wouldn’t help here.
When it comes to raising kids with different needs, when you know different, you do different. Whether the outcome is the same or completely different, trying doesn’t make you a dummy, which is good, because we don’t need any more of those in our house.
This post was originally published at Hopeful Parents.
Yesterday Pudding asked me to read her Alexander and the the Terrible, Horrible, No Good, Very Bad Day. Pudding likes this book, but it goes in phases for her, and she hasn’t been interested in reading it for several months. I wondered if there was a reason for her choice….
I went to bed with Daddy in my room and then I woke up and Daddy wasn’t there, and I was scared. I went to Mummy and Daddy’s room, and they were asleep, so I had to wake them up to get in their bed. Daddy had to get out. Even though it hadn’t started yet, I could see it was going to be a Terrible, Horrible, No Good, Very Bad Day.
When I woke up it was still dark and there were no birds singing yet, so I had to make noise instead. Mummy is grumpy, so I keep talking and turning until she cheers up. Eventually I hear Daddy get up, so I decide it is time to go downstairs.
Daddy wants me to do my therapeutic listening program, but I don’t want to. I don’t like wearing the head phones, and I don’t want to listen to that music. I pull the cord out of the CD player and Daddy makes me do it again from the beginning. I get my pink yoghurt on my Hello Kitty nightgown and I start to cry. It isn’t even 7 O’Clock, and already it is a Terrible Horrible, No Good, Very Bad Day.
I think next time I’ll move to Australia.
Mummy washes my face and the cloth is scratchy. She makes me take off my Hello Kitty nightgown to be washed and I don’t want to. I want to always wear my Hello Kitty nightgown. She makes me wear warm clothes and socks, when I want to wear a dress and no socks- I could do that in Australia.
Cubby has to get dressed too, but Cubby doesn’t have to go to school. Cubby doesn’t even have to go back to school until May. It isn’t fair- I should be able to stay home too. I tell Mummy I’m not going to school today. She take me anyway on this Terrible, Horrible, No Good, Very Bad Day.
The little kids at my preschool scream and cry and it hurts my ears. I tell Mummy I want to go to a different school. Mummy says she’s working on it, but she isn’t working on it today and I don’t want to go today. I have to do OT when I don’t want to, and speech therapy too.
I bet I wouldn’t have to do that in Australia.
Mummy picks me up from school and she tells me we have to go to a lab-o-ra-to-ry. I don’t like it there, they hurt me the last time. Mummy says she has magic plasters (Band-Aids) so it won’t hurt my arm this time, and puts them on where my elbow is. I don’t like it. I try to take them off. Mummy and my teacher tell me I can’t take them off, but Mummy draws Hello Kitty on them and I like them better.
When we get to the hospital we have to wait for a long time. The lights are too bright in here, I want to go back outside. I don’t like to wait, my brother doesn’t like to wait, and my Mummy doesn’t like it when me and my brother have to wait. Mummy has to write on lots of forms. I try to draw with her pen, but she doesn’t like that. Mummy seems angry and I don’t know why and that makes me scared. I knew for sure this would be a Terrible, Horrible, No Good, Very Bad Day.
Mummy says we have to be good in the waiting room to get a lollipop, but when I try to be good by spinning around and making noises, she thinks that isn’t being good. Then I go around the room and touch everything, and Cubby copies me. I don’t know what else to try. I’m confused, and that makes me more scared.
Finally it is my turn to go in, and I get up on the bed and I am brave. Now the nurse takes off my magic plasters, but I don’t want her to because she didn’t ask first, and because they have Hello Kitty on them. I tell her I need a Hello Kitty Band-Aid, but she shakes her head at me. I don’t know what that means. The nurse tells me it won’t hurt because of the magic, but then I see the needle, cotton wool, and the little dish thing from last time. I remember last time and now I’m very scared. Being this scared hurts me more than needles. Mummy reminds the nurse again about my awe-tism, and the nurse’s eyes move upwards like they’re going back into her head. I don’t know why she did that, but it feels like Mummy is more angry. I can feel when Mummy is angry, even if I don’t know why. It makes me more scared.
Mummy tells me not to be scared, and says I’m being brave and will get a lollipop for sure. Mummy also tells Cubby he can have one, but I don’t know why because he isn’t brave and anyway he’d better not get a pink one. Mummy holds me and talks to me about going swimming. I love going swimming, and soon everything is done and I’m not scared any more. I get a lollipop, and it is pink.
We go back to get my things for swimming and on the way Cubby is talking about how he and Mummy went to one of my places while I was in school. I hit Cubby, but I’m the one who got into trouble.
I’ll bet that kind of thing doesn’t happen in Australia.
When I’m getting changed I have to stand on one leg and I fall down. My class for swimming has been changed and now it is all boys instead of girls and boys. I don’t like this and I get mad, but Mummy says I have to calm down if I want to go swimming. I do want to go swimming, but I’m still mad, so during the lesson I keep undoing my costume and telling everyone, and showing my galou-galous. Mummy says after that she is glad Daddy wasn’t there.
Mummy says it is cold outside, and even though she cut off all my hair when she didn’t like the way I cut it, she makes me use the hair-dryer. I don’t like hair-dryers, not on any day.
We go home and have dinner, and I get ready for bed, and it is almost the end of my Terrible, Horrible, No Good, Very Bad Day.
If I think about it though, they probably have hair-dryers in Australia, because I’ve lived on three continents and things don’t change as much as you’d think. I ask if we can read the Alexander book. Mummy is looking at me strange, and she asks me what was my day like. I’m not sure what to say to answer her, so I tell the truth:
“Today is Monday, Mummy.”
Mummy smiles and tells me that it is. And gives me a cuddle, but I can’t go to sleep unless she stays in the room with me. I hope she is there when I wake up again…..