Archive for September 2011
Just before Cubby started preschool, I mused about if we were ready for this next step. Here is how it went…
The first day, he’d been as excited as can be. He happily carried in his backpack, and ran to get to his class. Pudding and I stayed with him for a few minutes as he discovered new toys. Then he cried when we left. And when I say, I mean CRY. I could hear his screams as I put Pudding back in the car to get to her school. I collected him early, and he was still crying when I turned up. He’d spent the whole morning in either the teacher’s or assistants’ arms. His dummy (pacifier) never left his mouth. He didn’t speak to anyone. He didn’t interact with anybody else. He wouldn’t eat or drink. He didn’t focus on a single thing apart from the gate, waiting for me to collect him. I felt awful.
On Tuesday, he woke up in a state. He knew what was coming, and he didn’t want any part of it. When we arrived at school, his teacher had to pry his arms away from around my neck. I skulked away with the promise that I’d return in 2 hours.
The following day, he attached himself to a particular assistant. As long as he was with her, he was okay. He wasn’t crying as I collected him.
The day after, he cried as usual when we got to school, but he sobbed that he wanted his dummy and I left, still feeling guilty. When I collected him, he was happy. He’d stayed by the assistant all day, and he’d made a racecar in baking.
Still crying on the fifth day, he entered the classroom and asked where his favourite assistant was. I waited until noon to collect him. It was circle time, and he was the only child not in the circle, sitting by himself on a bench. He couldn’t wait to tell me about the book they’d read together.
Then came a busy weekend, complete with dislocated elbow, a friend’s birthday party at the fire station, and giant slide.
The next day was Monday again, and the tears were back. But when I collected him he was playing in the ball pit near the other kids.
On Tuesday there were more tears. But when I collected him, he told me the name of the boy he was playing with.
Wednesday, there would have been no tears, but then I dropped his cup on his head as I got him out of the car, and it was just.too.much. He needed the dummy and his assistant to get over it. By the time I returned, he was eager to tell me about his painting.
Today. No tears. No dummy (though he did stash one in his pocket). No guilt. Just a preschooler going to preschool, and a Mummy finally convinced she is doing the right thing by her boy.
The giant slide.
Happy Wordless Wednesday!
Yesterday, I went to the gym. Wait, that shouldn’t be a blog post. That kind of inane comment is just what Facebook was made for! But going to the gym is no ordinary matter for me, because this was the first time I went to the gym in 5 years. With Cubby in preschool until noon, I’m now at liberty in the morning hours. My mind was full with the overflow from a particularly hard week and I needed to work it out. To the gym I went!
Although I was pregnant the last time I went to the gym, I was in much better condition back then. I’ve spent the last couple of weeks limping around with a herniated disc, but even before then I was out of shape. Epic inter-continental moves with special needs children is not a lifestyle which lends itself well to regular workouts. You know that wall that runners hit during their marathon? I was hitting mine just getting started.
You know though, if you have spent the last few years of your life tending to little people round the clock, it gets a bit weird being without them. Like having nobody holding my hand. My arms were all dangling free. I felt a little strange being by myself, which is odd considering most of the people there were alone too. I decided to start on the indoor running track.
Ooh yes, my swanky gym has a climate controlled indoor running track with panoramic views of the city. It is divided into three lanes: walk, run, pass. Nothing to do but start walking, and I did. The first lap went surprisingly well, so I set myself a challenge, I’d do 10 of them and I’d alternate walking and jogging. I’m only talking 10 laps, this was no marathon.
It was a marathon.
After a couple of laps, I was ready to pass. And I don’t mean run in the pass lane to overtake the other joggers. There were no others on the track. I mean take a pass on this whole exercise malarkey. I was competing against myself, and losing fast. Or slowly. Losing anyway. I hadn’t brought my inhaler. My thighs used to have a lot more space between them. I really could have used a drink of water. I came up with a dozen excuses to stop.
But I didn’t.
I kept going. My marathon. At around lap 7 or 8, I noticed that there was a distinct temperature change as I moved around the track. I hadn’t noticed at first, but as I passed through the sections with windows, the African sun burned through. In the areas with no windows, the air conditioning was icy, way too much of a contrast for my stressed out body. Just like how certain things don’t bother Pudding at all when she is feeling good, but when she gets upset, she is overwhelmed by the intensity of input she normally tolerates. I didn’t feel like carrying on.
But I did.
I made my 10 laps. I crossed the finishing line. Nobody was there waving me on. There won’t be a medal in it for me. And I certainly didn’t break any records. But this is my marathon, and I kept going. I even moved on to the rest of the gym, spending over 2 hours there in the end. I know that next time I try that track, I’ll find it easier. The next time easier still. In no time I’ll welcome the heat of the sun that reminds me how cool the a/c is. I’ll find it easy, and wonder what I ever found so hard about putting one foot in front of the other.
I’m not who I was the last time I went to the gym. My body has changed, but so have I. I’m stronger now, at least on the inside. With time and effort, that will reveal itself on the outside. I’m aching, but I went back to the gym. This time I was gentler with myself. No track for me today, but I’ll be back. Now that I’ve started my marathon, there is nothing to do but keep going.
I have decided to begin an A to Z series of postings. Because I’m the kind of person who just has to start at the beginning, here I am at the letter A. A is for many things. A is for Autism and Asperger’s, of course. A is also for ADHD, another diagnosis for Pudding. A is for anxiety, goodness knows I’ve written about that, and hardly covered how it impacts our life. A is for auditory processing dysfunction. I could keep going, but today I’m starting with advocacy.
Whenever power cuts and my lousy internet connection have permitted, I’ve been following the dialogue series between parent-advocates and self-advocates. I’m glad I have, it has been illuminating, and I’m very glad TGPA provided this forum to air this most necessary discussion. Are we as parent-advocates listening enough to what self-advocates are saying? Can we really be doing so when organizations involving autism research and support don’t consult with adults with autism, effectively barring them from the conversation about them. Who knows autism better? Someone who lives with it, or someone who parents a child with the diagnosis? Both the (ongoing) series of posts, and the many comments have left me with much food for thought.
We have to start listening to what adults on the spectrum are saying, and supporting them in their advocacy efforts, particularly when, especially when we as parents don’t like hearing what they have to say. As was mentioned in the posts and comments, there is a difference between parental advocacy and public advocacy, and it is clear that adults on the spectrum will do a much better role at the centre of the latter. I plan to embrace my role as supporter and ally, learning when to speak out for my child, and when to listen.
I can’t help but think of Pudding, and how she might feel as an adult if her opinions and advocacy efforts were dismissed in favour of mine. It would be absurd, it would be wrong. Yet this is the experience of many adults brave enough to advocate in a world that doesn’t welcome them or their opinions. It is hard, for us as parents who have nurtured and protected our dependent children to relinquish that role as our children age. I saw it in several families when I worked as a carer. I’m certain that I’ll struggle with it too, as most parents do. My job is to help Pudding become as independent as possible, even independent of me.
Pudding herself as an independent streak running through her. If she is able to do something herself, she will do it, and refuse any assistance. Our efforts as parents lie in encouraging and motivating her to do those things that she struggles with, many of which will be necessary for independent living. Her current educational/therapeutic program features some intensive occupational therapy. She makes a game effort, but sometimes the tasks are just too much for her.
One day last week I collected her from school, and her teacher informed me with a smile that Pudding had been “non-compliant” during a challenging activity. Struggling to find the right words to tell her she needed a break, she told the teacher that she (Pudding) was naughty and needed a time out. Her school has a calm room with a ball pit and swings, and her teacher directed her there for as long as she needed. We’ve established goals for speech therapy to learn the phrases to say when she has had enough, and we continue in occupational therapy to find ways to help Pudding learn what helps her to regulate when her senses are overloaded.
My girl is fortunate enough to be in a place where she can assert herself, and she will be listened to and respected for it. I only hope that I can say the same thing when she gets older. As parents, we don’t have to wait to start listening, not when there are adults struggling to be heard right now. It might be the greatest act of advocacy we can perform.
She’s making her list, she’s checking it twice. It doesn’t really matter if she’s naughty or nice, Santa Claus is coming to town. In Pudding’s world, we’re gearing up for Christmas. Never mind that this is only September. Never mind that we’re moving from Spring to Summer here in the Southern Hemisphere. The last thing I feel is Christmassy. But that matters not at all to our heroine.
At the weekend she declared: “It’s Christmastime.” And that is all is takes. For once I’m glad that our belongings haven’t arrived from the US yet, because if she found the decorations, no doubt our house would resemble a grotto within minutes. Last year I got the tree up the week before Christmas, and that was plenty for me.
The thing is, Pudding is right about making these preparations. We now rely on Pouch mail services, which is sporadic at the best of times, and a nightmare leading up to the holiday season. A couple of weeks ago we were sent an email telling us that we should make sure we order everything in the next couple of weeks to be certain we’ll have it in time for Christmas. Oh dear, not going to happen.
At least Pudding is prepared. She has a very long list that she wants Santa to know about. I think she sensed our unease, and looked for other ways to reach the man in Lapland. She found it, in her grandparents. Pudding opens up Skype on the computer, and calls her grandparents, not minding such things as time zones. Here is a typical conversation:
Pudding: Hello, hello, hello? Hello….
Grandparent: Hi Pudding, is that you? Where’s your Mummy? [It is about 5 am here, lucky we love you]
Pudding:Hello….Hellooooo [Pudding will ignore any interruptions to her carefully planned monologue, these people are amateurs!]
Grandparent: Yes, hello to you too Pudding. [There you go, much better.]
Pudding: What’s Santa gonna buy for you? [A little pronoun reversal between family. Not to be interpreted as an interest in your Christmas wishes, oh no.]
Grandparent: Well, I don’t know, Pudding! Tell me, what is Santa going to bring for you? [Good, Grandparent, you’re playing properly!]
Pudding: A toy Hello Kitty. A toy Abby Cadabby. Some clothes for Kelly doll. A buggy for Kelly doll. A high chair for Kelly doll. A pink castle. A Hello Kitty nightgown. A wand. A pinkalicious dress…..
In the same order, every time. It doesn’t matter which set of grandparents, she has determined that they have an ‘in’ with the jolly old fellow, and she is going to make the most of it. You may have noted that Santa buys presents, according to Pudding. She is unimpressed by my talk of elves and workshops. She wants nice new shiny things from toy shops. Preferably wrapped in pink.
Never one to miss a chance to exploit my girl’s wishes, I came up with a plan to help us suffer through this eternal Christmas countdown. We’re going to make a big list, and bedazzle the heck out of it with winter stickers (ooh, fine motor delights) and glitter glue and all kinds of things. When she earns a reward, she can add to her list. But here is the thing- she must add to it. She can use those infuriating kiddy scissors and paste a picture, or she can learn to write the new words, but that list will be her own work.
This year, Santa is managing car repairs and medical bills galore, he is going to make sure she earns everything on her list. He is going to have his work cut out getting all the way down here on his sleigh. Even if he does have a couple of sets of elves suckered in on either side of the Atlantic.
Housing abroad is frequently quirky. Our current home is the quirkiest I’ve yet seen though. Take our downstairs bathroom. Here we have a small enclosed tree with the branches cut off. The top is secured- a perfect place for keeping your pet monkey. Because who wouldn’t want to shower with their pet monkey watching them?
I’m scratching my head as to what to make of this area if you don’t have a pet monkey. A friend suggested keeping the troublesome twosome out there during Time Out. Perfect. You see, if they got dirty playing the plants, they could shower off as they came back indoors….
Look, a book! Forty of the best special needs bloggers have contributed to this collection of stories about parenting our amazing kids. I’m honoured to have taken part in this collective, which will make you laugh, cry, and realize that you’re never alone. All the stories have never been published before. Click here to find out more.