Archive for March 2012
On Friday afternoon, I was trying to hold it together. I was exhausted, and wanted to crawl into bed, but that wasn’t an option. I’d kept Pudding home from school with a cold, but she was just getting more and more hyperactive.
I went to the bathroom, and when I returned to the kitchen, I found some hair that had been snipped. Close by were some kitchen scissors, that had been placed out of reach, but nothing is out of reach to Pudding. It was only a matter of time before she cut her hair again, and that was the time she chose.
At first I was relieved that such a small amount had been cut, but when I picked it up to out it into the rubbish bin, I found lots more. I did not handle it well.
She’d cut the hair above her ear, and It looked like a one-sided mullet. Together with the bits of hair that she’d cut close to the scalp the last time, it looked really bad.
The next day I’d calmed down considerably, but I still hated the hair. The last time she’d cut it, we’d taken her to the hairdresser. Spectrummy Daddy thought that if we established that hair could only be cut in a salon, she’d stop attempting it at home. I’d demanded a pixie cut, but she refused and did her best to fix it up. I didn’t like the “style” with Pudding’s contribution to the procedure still clearly visible.
So on Saturday, I resolved to take matters into my own hands. My friend came over to help (make sure I didn’t go too far), and Pudding got a pixie cut. It really looks adorable. Her eyes seem even larger than before. The bits that she cut blend in much better. It has more texture, but is easier to manage. I love it.
She hates it.
She felt how short I was cutting it at the back, and ran from the chair. I had to finish trimming as she bounced all over the place.
But worse was to come when she looked in the mirror.
“Pudding was a girl.” Over and over. Followed by screaming and crying.
We went out into the garden to calm down, which I hoped would happen quicker without any mirrors around. My friend took this photo, which at once shows how cute her new style is, and how unhappy she is about it.
While Pudding has always been attracted to long hair, I never realized she had made such an association between hair-length and femininity. I thought she just enjoyed the tactile sensation as a sensory seeker. Pudding’s hair came in slowly as a baby, and doesn’t grow quickly now. I didn’t realize that she had this impression that girls must have long hair, and boys’ must be short.
She was still upset later when we went to an event with the consulate community. I mentioned to another friend how upset she was, who told me she’d read recently that girls in kindergarten will already exclude other girls if they don’t have long hair! Like Pudding needs another reason to be excluded- we can’t even get her onto kindergarten.
A couple of days later, and she seems to have settled into her hair. At least, she can look into a mirror without tearing up. We went to the shops to let her pick out new hair accessories, and everybody agrees how gorgeous she looks. It is long enough for her to twirl still, but dries much more quickly (the noise of the hair -dryer is a problem for our girl).
So we thought our problem was a 5 year-old who is a little scissor-happy, but now I wonder at how her self-esteem may be affected. There is a bigger problem that our culture so effectively constructs femininity that hair-length is such a serious matter at such a young age. Then again, should I be pleased that a child on the autism spectrum is sensitive to such matters?
I don’t really have the answers to such questions. I’m just trying to raise two children to be as happy and balanced as possible in a world that isn’t always very accommodating to those who are different. If Pudding feels she needs long hair, then I’m not going to get in the way of that. I just hope she doesn’t self-sabotage when she next feels the urge to cut.
And given how long it is going to take to grow her hair out, maybe she’ll learn there is much more to who she is than her hair, a lesson I once learned myself. Long hair or short, she’ll always be somebody.
I haven’t written about what has been going on, but I’ve decided that all parts of the story need to be told. This month has been hard. I need to let my friends who call me a super-mum know that I’m really not feeling super. I need to explain that although we love living here, it comes at a price. But most of all, I just need to tell the truth about hard times, because I know many people are going through even longer, tougher, more challenging times. It isn’t fair to them, or myself to pretend everything is fine.
So, this month has been hard. Mostly it has been difficult because I’ve been unwell. So as not to scare away my (three) male readers, I’ll refer to my health issues as some ongoing lady problems that have been getting progressively worse. Ultimately, I’m now very anaemic, which is good in that it is treatable, but bad in that it makes me feel lousy. I’m weak and tired. My brain feels like mush, and can’t seem to retain any information, I’m forgetting appointments. I have heart palpitations, and wake up with numb hands, arms and feet. My immune system is struggling, so I’m catching every germ I come across, and each one is hitting me hard.
Some of my medications have nasty side-effects too, and one weekend my fingers swelled up and I had to have my wedding and engagement rings cut off. But I am receiving treatments, including iron injections every two weeks so that I’ll be back to speed in weeks rather than months. Though I can’t exercise at the moment, I’m doing my best to rest, eat an iron-rich diet, and take all the supplements to support the healing process. It just takes time.
I’m spending much more time indoors than I have previously while living in South Africa. Unfortunately, living in a house with bars on the windows inevitably feels a lot like living in a prison, this is made all the worse by the fact that recent events mean I don’t feel as safe in my home as I used to. Earlier this month, there was an armed robbery on our compound. By a huge stroke of luck, all the families who live here were out at the time. Generally on a Saturday afternoon, either our children or our neighbours are playing where the incident happened. Anyone who has a young child on the spectrum knows that in the face of danger, they are likely to behave unpredictably. I’ve lost many hours of sleep thinking about what might have happened if we hadn’t gone out that day. The security officers here are great, and have already made some changes to minimize the risk of this happening again, but I’m shaken that an electric fence, gate, and security guard were ultimately so easy to overcome.
It has been hard because I’m always far more homesick after my parents visit than I am before. Homesickness and culture shock are wrapped tightly together. The more you miss home, the more alien a place can seem. I’m struggling to remind myself to enjoy all the wonderful people and places here, rather than wishing for September to get here for an R & R trip back to England.
Last week brought things to a head. I forgot to take Pudding swimming one day, then Cubby to OT another. Then Cubby was ill, followed by Pudding too. Instead of wanting to rest in bed, my kids become more hyperactive when they’re sick. Not only was I struggling to keep up with them, but I’d missed the very things that help them to regulate. By Friday, I was just exhausted. Not only was I feeling too weary to face the effort of getting Pudding into school, or schedule an appointment for a 24-hour EEG for a child who couldn’t handle a 30 minute one; but I was too drained to get through another ordinary day.
Far from the “super-mum” a friend called me in an email, I was feeling physically and emotionally at rock bottom, and taking my frustrations out on the very people who most need my love and support. When Spectrummy Daddy got home from work, I took a bath, and let my tears fall into the water, until most of the tension left me. After we’d got the kids to sleep, we talked about what measures we could take to make things easier. But, once I’d finally let go of trying to keep everything together, I no longer felt like I was coming apart.
It isn’t the end of this hard month yet, but I’m starting to feel stronger. Yesterday when the car broke down, I didn’t join it. I was just grateful it happened with Spectrummy Daddy there, and in a safe place. I’m using visual strategies to keep me on track of the things I need to do this week, and hopefully that will keep me from getting too overwhelmed. After all, if it is good enough for Pudding, it is good enough for me too.
So now I’ve honoured the truth. I’m not a super-mum. Though I love living here, it does come at a cost. I can go through hard times, and while they have absolutely nothing to do with autism, they can challenge my ability to parent. I’m going to keep telling the whole story, even if I’m hoping that this particular chapter will come to an end soon.
I haven’t written about this, because I’ve been too hurt, too indignant, but most of all just too weary. Spectrummy Daddy, however, has settled on angry, and he’ll tell you why. Please note that LLG (lovely little girl) is another pseudonym for Pudding….
Recently, we’ve tried to find a school that will take Lovely Little Girl. It can be difficult, but there are numerous remedial schools that have fine reputations here in Johannesburg who aim to mainstream their students. That’s what we’re looking for, a place that will take her, and help move her to a normal school. It’s one of the problems we have: Schools won’t take her because she’s only been involved in Autism centered programs, but she can’t get in to a school to give her the chance. It’s a vicious cycle.
So when we got an appointment with one of these remedial schools and they said they’d take her on a trial for 3 days, I was excited but also a little scared. 3 days isn’t long for someone who isn’t on the spectrum to get acquainted with new surroundings. Heck, I take at least a week, and I’m purportedly neurotypical. Still, it was a chance to get going and maybe have her ready for a new school next year. We didn’t prepare her as well as we should have, but sometimes it is better to have her at her worst to make sure the school knows what they’re getting. Usually, though, in a new environment LLG is a bit timid at the beginning. I was hoping she would steal the hearts of the teachers and they would say how excited they were to have her coming the next year.
It wasn’t to be. They had her for 3 days (actually 2 1/2) and called afterwards to tell us that they couldn’t provide for her, and we should try an autism only school. Never mind that everyone that has ever had my lovely daughter in a class or therapy tells us that she is a prime example of a child that would blossom with mainstream schooling. Never mind that you really can’t tell anything from 2 1/2 days of school observation. Never mind that they used words that showed they were fixated on her being on the autism spectrum. No, they couldn’t help her.
You know what? If they truly didn’t have the ability to help my daughter, then I would be ok with that. I’m not going to force them to take her when it wouldn’t be beneficial to do so. I have her needs to look out for as well. What really steams me is that it appears that they didn’t even try. 2 1/2 days doesn’t tell you anything about my lovely daughter. They said she went on “elopement” during her first day to go and jump on the trampoline. That’s a particularly “autistic” phrase. My question is: Did you tell her it wasn’t time to jump on the trampoline, or did you leave her out there to continue jumping? Did you lay out the rules for jumping on the trampoline? How many kindergarten children, seeing a trampoline at school, would not go and try to jump on it? But, because my daughter has autism you assume that she just does her own thing and can’t be told to come join the circle? REALLY?!?!?
Also, the fact that it was only 2 1/2 days. That’s all they gave her. She doesn’t come out of her shell until at least day 3, and even then it’s only a little bit. New school environment, new teachers, what little kid wouldn’t be a little off. Heck, I remember crying for my mother when I went to Kindergarten, and she worked in the same school! (I was a bit of a wuss.)
The worst part is, my daughter loved it there. She talked about her new school, and cried when we took her back to the school we have her in. That’s what upsets me the most. That my wife and I had to tell her that she couldn’t go back to the new school, because it wasn’t to be. I’ve promised myself that no one will ever tell Lovely Little Girl that she can’t do something because of her autism. If she wants to be a writer, painter, philosopher, activist or even a mother, no one can tell her no. She will do what she wants to do, all they need to do is give her a chance. This school effectively said she couldn’t handle the work they do there, and that we need to lower our expectations.
My response is that my daughter probably would have gotten bored at their school because she is probably smarter than the teachers, and we need to find a place to help stimulate her mind to reach its full potential. While she needs work on some things (like not poking someone in the chest who wears a Hello Kitty shirt as a way of greeting) in others she’s fine. Heck, I can’t do lenticular puzzles, but she does them in less than 10 minutes. She’s already figured out how to use skeleton keys and how to get things from locked rooms without getting caught. My trouble is making sure she uses her powers for good and not evil.
We’ll find a school to take care of her. I know we will. But this lack of trying by a school whose job it is to help those who need help the most still bothers me. Hopefully I’ll get over it, and one day maybe LLG will use this as the starting point from her speech she gives when she graduates from University at the top of her class. Even if she never reaches that point, I’ll still always believe she can.
This post was published today here at Hopeful Parents, but the site is taking so long to load that I’m posting it here as well.
I spend a lot of time teaching Pudding skills that I hope will prove useful to her in the future. Sometimes I teach her things that are also useful to me right now. Earlier this year she learned how to make her own bed. It is great that my girl at 5 is managing something my mother couldn’t get me to do at 15, and most days I take more than a little pride in her achievements.
There is a downside, of course, waiting to bite. Some days we’re running late, but Pudding insists on making her bed before leaving the house. As I wait with the utmost impatience, I’m reminded of the old adage, be careful what you wish for.
Now the solution would be to organize ourselves better so that the bed-making was taken care of long before we need to set off. But being organized isn’t my strong suit. I blame my mother- she didn’t even teach me to make my own bed until my late teens, my lack of organizational skills is entirely her fault! Just kidding (Mum!) and in truth, who cares about being a few minutes late for school when such essential learning is taking place right at home. Not just domestic chores, but time-management and planning.
Then there are other things that I haven’t taught Pudding. Some things I’m not sure how to teach, or I’m not sure if they should be taught. I walk a line between deciding if something is a necessary skill, or if it would be trying to force neurotypical ways on an autistic brain. I read accounts by Autistic adults, but my ultimate gauge is my relationship with Pudding. I imagine having conversations with her in a decade or two, in which I justify my actions.
I have no qualms about teaching her to make a bed. She’ll thank me one day (thank you, Mum). But what if my efforts were to go too far? What if she felt forced into acting in a way that isn’t her, and doesn’t make sense to her? Some things aren’t black and white skills, but a whole murky grey area. A sense of what is appropriate may differ vastly from person to person.
For a long time, if I was sick, in pain, or crying with sadness, Pudding did not seem to show empathy. I’m not saying she didn’t feel empathy, just that she wasn’t expressing it in the way I expected. But expressing empathy in my (neurotypical) way, was not something I felt I should teach.
Perhaps as she got older, I’d tell that people expect others to behave in certain ways, but only at the point I felt I could do that without Pudding feeling judged or wrong for expressing herself differently. I can tell from the awkwardness of that sentence that I’d struggle with that no matter how I tried.
Fortunately, for me, Pudding has lately begun to express empathy in a very typical way. Last week when I mentioned I had a headache, Pudding got out of her chair, crawled into my lap, kissed my forehead twice and told me she was making it better.
Would you believe me if I told you it worked? And it took less time than the tablets I’d already taken too!
I didn’t have to wait too long for this latest development to strike back. That same evening as I tried to get her to go to sleep, Pudding tossed and turned and eventually got out of bed. When I asked what was wrong, she let me know that her doll was too hot, and therefore she had to take off her pyjamas and replace them with a nightgown, which took her some time to find.
I felt my headache creeping back the more empathy she expressed regarding Kelly doll, empathy looking a lot like a tactic to delay going to bed.
Of course, sleeping by herself is another skill we haven’t yet figured out. If that one were to bite back too, I wouldn’t notice…I’d be too busy catching up on all those sleepless nights in a galaxy far, far away.
It had been a long day after another long night. So long, in fact, that I’m writing about this day in the past historic tense, even though it was today. Yes, today was that long.
My last task of the day (not really, but my last driving task of the day) was taking Pudding to her swimming lesson. We go twice a week, and normally I don’t mind taking her. Seeing her so happy in the water makes up for the inconvenience of going there. And there is inconvenience.
Sometimes it comes in the form of Cubby, who always feels like he wants to come with us, until we get there and he remembers that sitting on a bench and keeping quiet is the opposite of what he wants to do. Most times I’ll cave in and take him, but occasionally he chooses to stay with Ms. Leia until Daddy gets home. Today, thankfully was one of those days, because with a nasty croupy cough, things could have been much, much worse.
Most of the time, the inconvenience comes in the form of driving the mean streets of Johannesburg. There are all kinds of hazards to deal with, to the point that most days I’m convinced I’ve been sucked into a virtual reality game. If I’m not avoiding kombi buses as they swerve across the lanes while continuously beeping their horns, I’m trying to avoid the erratic truck in front with about 15 men and building equipment piled into the back, or it could be a mother distracted by her toddler IN THE FRONT SEAT, NO CHILD SEAT OR SEAT BELT!!!
Worst of all, though, are the windscreen washers at the lights in this particular route. That sounds nice, doesn’t it? Someone offering to clean your windshield as you wait for the lights to change? No. It is an act of aggression. No matter how you shake your head and say no, one of these guys will pull your wipers up, then soapy water will be sprayed on your clean windscreen. And then if you don’t pay (because security has advised you to NEVER open your window, or in any way encourage this kind of activity), they will threaten you, try to pull off your wipers so you can do nothing about the fact that you can’t see, the lights are about to change, and the aforementioned erratic drivers are honking at you to move.
But today, the longest day after the longest night, the 15 minute journey took 50 minutes. It had been raining all day, and traffic was even worse than usual. Even though it was still raining, the windscreen washers were still out. I managed to avoid an incident this time, but my heckles were up.
Pudding’s lesson is only twenty minutes long, with two boys also on the autism spectrum. There are other lessons immediately before and afterwards, and it is a tightly run ship. Even though we’d left the house earlier than usual, we arrived just at the end of the alloted time. I predicted that Pudding wouldn’t be able to swim, but thought I’d try our luck anyway.
Her teacher graciously allowed Pudding to join the next class. I wasn’t sure how well she would do. This class had two other girls and two boys, and they were all neurotypical. I watched her closely to see what would happen.
“New friends, ” she announced, and didn’t try to touch anyone, even though one girl was wearing a Hello Kitty swimsuit. So, yes, her attention did wander a couple of times, but perhaps not even as much as usual.
And get this: when the teacher constructed a foam diving board, and had the kids walk and jump off it she…didn’t do the same. She got down on her bottom and scooched along. A pretty good method for someone whose balance is challenged and can only jump on the spot, not off something. I wasn’t the only one who thought so, because Girl in Hello Kitty did likewise.
But then, get this: she did it! She watched the other kids and imitated them perfectly. She pushed herself to do something that she has never done before, and I’m pretty sure that was because of her peers in the group.
Now, lately, I’ve been mulling over the idea of inclusion. Pudding has so far exclusively been educated in autism-specific environments. There are pros and cons to inclusion, and I’m not certain that it would be The Right Thing for Pudding. But when I see her step up and take a leap like that, it makes me think I should be ready to do the same. I’ll write more about why this will be such a battle, but for now, just consider that including Pudding made this long, long day turn out to be not so bad after all. Still, I’m ready for it to finally be tomorrow.