Artistic
Pudding loves art, so it was high time we gave her the chance to indulge in an activity that focused on her talents. This weekend I discovered a place nearby that was just perfect for us- an art studio where you buy a canvas, and all paints and materials are free to use to make your work of art.
Both kids enjoy the process of painting, they don’t usually care too much about the end result, but going to an art studio was different, and special.
I hadn’t counted on how busy such a venue might be on a Sunday afternoon. It was crowded with lots of people, noise, bright lights and colours. Coming down with a cold, my senses were under assault, and I could feel myself getting overwhelmed. Cubby became more restless too, but interestingly, Pudding seemed to channel her focus into what she was doing. Generally, rather than become more absorbed in an activity, she tends to withdraw and disengage in the face of potential overload. Not this time.
Pudding still struggled with motor-planning. She wanted to paint a heart in her picture, and asked for my help. Frequently when Pudding draws at home, she gets frustrated that the image doesn’t match her expectations. Here she didn’t get frustrated: she just kept painting until she was done.
This was a place where Pudding could express herself without the challenge of words. A space where getting absorbed in her activity and tuning out the rest of the world was an asset. A place where she could be herself: as an artist and an autist.
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Wonder
I could hear the catch in my throat as I told the woman she was wrong. That rejecting Pudding’s application for admission was a mistake, for them as much as for us. It really was us and them, no matter how she tried to tell us this was in our best interests- not giving Pudding a chance is wrong.
Pudding had gone through a battery of tests for this school. The first day of the tests as soon as she woke up, I knew she was ill. I also knew we wouldn’t get a second chance. I would just have to hope she would shine through. But when Pudding is ill, everything is too much, and a strange place with unfamiliar people and questions she didn’t feel like answering were beyond her comfort. The following week she was feeling better, and performed as required, but the decision had already been made against her.
And instead of just denying entry, we had to sit, again, and listen to Pudding’s autistic traits used against her as reasons why she shouldn’t be included. Once again, this is a remedial school. A place that is supposed to welcome and support students who need a little extra help. But the doors are closed to us.
I tried to distract myself from feeling hurt over the weekend. Hurt isn’t a good emotion for me. I mope and feel sorry for myself without doing anything. Doing nothing does…well, nothing for Pudding.
I’m hosting the book club in our little community this month. One book particularly appealed to me, Wonder by R. J. Palacio. I found a short video taster for the book which ended with the line:
“You can’t exactly blend in when you were born to stand apart.”
I quickly downloaded the book, and laughed, cried and cheered on the protagonist through his journey. It is a work of fiction, of course, but at its heart is a message that held me up this weekend.
It doesn’t matter how nice the campus, how well-equipped the school, the size of the classrooms, or how expensive the admissions process- the only thing that matters is that we find a place that embraces Pudding’s differences. Not accepts…not tolerates…but truly acknowledges the wonder of our child. Because then, and only then will she show them how right they are about her.
Seven Keys to Unlock Autism: Review and Giveaway
Elaine Hall is the founder of The Miracle Project, an acclaimed arts program for children with autism and other special needs which was featured in the EMMY Award-winning documentary, Autism: The Musical. Together with Executive Director, Diane Isaacs, we are introduced to the training program they developed for The Miracle Project to teach the techniques necessary to reach and teach children on the autism spectrum.
Hall and Isaacs, both mothers of children on the autism spectrum, acknowledge what many parents learn the hard way- to effectively engage with our children, we must develop the skills within ourselves to facilitate interaction through a child-led approach, focusing on the unique skills and talents of the individual, and understanding of sensory needs. Seven Keys to Unlock Autism breaks down these skills into self-guided exercises, together with real-life examples of using each key in a ‘locked’ situation to facilitate genuine inclusion.
The book also comes complete with a DVD featuring experts such as Stephen Shore, Alex Plank, Barry Prizant and the late Dr. Stanley Greenspan discussing how these methods can be used to develop educators and care providers with the necessary skills to enhance the communicative and social skills of children on the autism spectrum.
This work would be essential for a child moving into a mainstreaming situation, particularly if the teacher or facilitator was inexperienced with autism. Indeed, even educators with several years experience would find this an incredibly useful tool if they needed an alternative and creative approach to establishing a relationship with a child for whom other methods have failed.
As we are considering moving Pudding to a mainstream classroom for the first time, I won’t hesitate to give a copy of this book to those entrusted with her education. Without an open-minded appreciation of the different ways our daughter learns and develops, any efforts at effectively building a learning relationship with her will be stalled. This is an excellent guide to supporting a miracle in the classroom.
Here is the best part for you: I have three copies of Seven Keys to Unlock Autism to give away*. To take part, please leave a comment telling us about the miracle in your life, and be sure to “like” my Facebook page where I will be announcing the winners at the end of the week. ***Giveaway now over, all prizes have been claimed.***
Seven Keys to Unlock Autism by Elaine Hall and Diane Isaacs is published by Jossey-Bass and is available now for purchase.
*Apologies to my international readers, due to shipping restrictions, only those with a valid US, APO or DPO postal address can take part in this giveaway.
Wordless Wednesday 02 May 12
Today is my birthday! My body thinks it is 68, my brain is stuck at 17, so 34 fits quite nicely. I'm posting a picture of the Eiffel Tower I took when I was in Paris for my 30th, because I vow to be back there for my 40th and each year is taking me closer. Happy Wordless Wednesday!
Spectrummy Mummy to ‘I Wish I Didn’t Have Aspergers’: #AutismPositivity2012
Dear “I wish I didn’t have Asperger’s”,
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.
Isms
Pudding a month before she turned two- already displaying excessive tallness and symptoms of ballerinaism
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.
Dummy
“When you know better, you do better.” – Maya Angelou.
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.
On the Job Training (at Hopeful Parents)
Today I’m writing at the new and improved Hopeful Parents.
I have an interview, and I’ve been preparing extensively for it.
Come and read all about it by clicking >here<
