Human in Disguise
Posted on: December 3, 2015
As we celebrate today, International Day of Persons with Disabilities t
here are some things (not an exhaustive list by any means) that I would like some folks to keep in mind.
Dear Hon. Minister Browne,
By the time you read this letter you would have spent over three hundred days in office. As I write this letter I would have lived (still living) with a child on the autism spectrum for over twelve years. I am a mom and I am an advocate – And with this experience in mind I wanted to share some advice with you on an issue that you’ve been disturbingly silent on.
Let me say right off the bat that what I’m calling for is common-sense, clarity and planning with some urgency, with regards to the restructuring of special education in Antigua & Barbuda – Actually the restructuring of the educational system period. Where the child, as student, is at the center of reform, rather than a variety of external factors or where adults and their roles are central. Intentional restructuring I’m speaking of – One that recognizes that the student is the producer of educational results.
Is there any disappointment on your end that your Ministry has been unable to clearly articulate its plan for special education? Are you ok with the fact that more and more of our special needs children are either aging-out or dropping out of school? They’re unemployed; or if they’re paid, very few have a fulltime/fulfilling job/opportunities. This is not a rousing support of success and it surely does not support the status quo. Quite the contrary, it says we need to change what we’re doing. Frankly speaking, another three hundred days is too long of a wait to hear about what that change will involve.
So, in dealing with the future… I recommend humility. Just give up on making any spectacular claims. I’m way past being impressed. Those short term attempts at improving the provision of special education have been woefully inadequate; short-sighted at best, at worst…? But alas, there are still those pretentious bureaucrats in your department who get a real thrill out of assuming that their job is to spin policy (whether these policies work or not), entertain the public with interviews using lofty words, somehow securing added status. I’m sure something about this must feel good. It has to, since I’ve seen this tactic deployed so often. What you need to do is to develop policies that work. Policies developed through a collaborative process.
So we don’t have any money… I get it – Loud and clear. It’s pretty much a universal position for public schools; the fact that they’re underfunded – But I refuse to continue to accept that as an acceptable excuse. I often wonder why no one ever talks more about using the funding we have smarter. How about making the Special Education course which is offered to teachers in training, mandatory? For some reason there are those who think that special education is this stand-alone concept. It isn’t. Any “inclusion” policy is doomed without the support of the general teacher. And by the way this should not be voluntary either. These teachers should be required to do what is appropriate. Parents should not have to beg and plead with teachers and principals to take our children in the class. You cannot begin this process without the adequate preparation of the general teacher. They must know how to teach a diverse class. All our children deserve a fully-prepared teacher for every day of their educational careers. Yet we have made little progress with our efforts to provide training to the general teacher for work with special needs children. So what we have now is outright refusal by many to participate in the process. And though we’re often told by principals, teachers and education officials that they want parental involvement and that much of your ultimate success rests on our willingness to support your efforts, it is not always clear that those attempts to involve us (parents) are genuine. So, we’re the best, once we’re responding to your needs – Show up to your meetings – BUT – offer any real suggestions regarding educational plans. Hold up! Wait a minute… A lot of folks must be thanking God often for the fall-back excuse of blaming a child’s success on the lack of parental support.
I’m sure I don’t have to remind you that this is a human right, the right to a free, appropriate public education, which our children are being denied. What is happening amounts to discrimination – structural discrimination, which is the worst kind. Inequalities in education and society do not appear out of thin air. They show up when we don’t provide the foundational competencies needed to improve later learning. And whether you think this or not – by your inaction you continue to participate in denying them that right.
While I’m on this topic of funding can you tell us once and for all, what amount of funding is provided for students with disabilities in mainstream schools? What is such funding for? How such funding is allocated? So you don’t have enough… Ok, I get it. Tell us how you utilize what you have.
The least restrictive environment – Isn’t that our principle? This means children are removed from the general classroom only when their needs cannot be met in this environment. How many of your schools, if examined, can say that they’ve stayed true to this principle. Many of the placement decisions we make have very little to do with the educational need of the children. We know it, we put up with it, because in many ways it makes our lives easier. And before the teacher’s union activate their emergency plan… Let me just say that the Ministry of Education should be investing in more training – Consistent in-service teacher development programs. We need to bring teacher support closer – into the classrooms, where teachers work and where these interventions have real meaning and application. The odd workshop or information session is no longer adequate. And cramming a boatload of workshops into two weeks of summer won’t cut it either. It is simply not enough time to prepare anyone, no matter how intelligent or dedicated they are. As a matter of fact it just further exacerbates the problem – with the teachers themselves now representing one more inequality in our education system, further denying our children equitable educational opportunities.
Let’s talk about scholarships. Tell young people that there is no more noble profession than teaching, and that having qualified teachers in special education is a priority BUT we’re not just going to say it is, we are going to take steps to reform special education in the public school system. Practically speaking, you will be their boss and if you know a core part of your business is failing miserably and you do nothing about it, then why would anyone want to work in that department. Others will get excited about it IF YOU ARE, they will be committed to it IF YOU ARE; accept responsibility for it IF YOU DO. But Minister Browne… You must be able to articulate your plan. Say what the big picture is. And please, please, don’t say it’s building a school, or adding classrooms to Adele School. That just cannot be THE plan.
Speaking of which, access to tertiary education is not under threat. Don’t get me wrong… I’m not for one minute saying that it’s not important. All I’m saying is that right now, it is (access that is) not under threat. However, what I think is being threatened though, is early childhood and primary education, which you don’t hear much about. Who are we expecting to go to this University of Antigua & Barbuda I keep hearing about? Oh yes… Forgot I was talking about special education here and that the expectation is that those students will not make it to university. What a shame we make those determinations when our children walk into the classroom at three and five years old. I have to tell you Minister… This rush to build a university is giving off some serious legacy vibes. I’m not saying that it’s all about your legacy. I’m just saying that it looks like it. But you see, there’s something about legacy… And that is not to think about it. Try not to think too much about about how folks will remember you in the future. Just say what you’re going to do – Actually do it – Do it now, when it will make a difference in people’s lives. Trust me, the legacy will follow.
This haphazard enrollment of special needs students in some select (perhaps – who knows – I haven’t come across anyone who has any rationale on how these schools were selected) schools look like a publicity stunt. However, for the sake of this “one-sided” discussion let’s just say there was a plan. Can someone please tell us then, why these children were sent into already overcrowded schools? How these schools were selected? Why no accommodations were made for these students who were enrolled in these schools – not by chance but by purposeful planning? Is this a pilot program? Are we collecting any data to show what’s working, what’s not – How these students are progressing? Again, I’m not saying it was a publicity stunt. I’m just saying that it sure looked like one – And such actions would not only be morally suspect; it would also be strategically short-sighted.
In dealing with the education stakeholders, my advice… Spend more time listening than talking. I know… It will be difficult, you’re in a lofty position now; but you need to respect the fact that those who work in schools know more than you or your bureaucrats about the everyday struggles of learners and teachers. Don’t become so preoccupied with hearing your own voice you think you sound better than MJ (come on now) because you will spend your time trying to impress the Prime Minister (so that he reappoints you) and the people (so that they tolerate you) with gimmicks — those flashy, short-term, dramatic changes that anyone serious about educational reform will tell you are simply unsustainable. Haven’t realized that if we don’t do this part well then we’re on the road to failing our children?
So, the more you listen, the better you will perform.
Finally, Minister, as you lead what I think is one of the most precious assets of our country, our education system; I wanted to share one final piece of advice with you. I’m sure you’ll have some harsh thoughts about what I’ve written but let me suggest patience. You’re in a public position and will be criticized… Deal with it! Democracy is not more important to politicians than it is to the ordinary man who has to live with the effects of the policies or lack thereof set by them.
So I will tell you now – Don’t waste your time trying to find out anything about me, don’t announce any broad-based parent meeting unless you and your team are prepared to have serious dialog about the future of special education. Seriously, we’re all going to float away if we hear anymore “fluff”. Also, don’t go all “Chris Christie” on me because I’m being critical – because I see that as doing precisely the opposite of what you should be encouraging in the education system these days and that is critical thinking and community involvement – And wouldn’t that be a shame.
Sincerely,
Salma Crump
I Stand Quietly
Posted on: April 20, 2015
I stand quietly while you do somersaults on the bed as you aren’t being naughty; you are just trying to get your out of sync body under control.
I stand quietly by the toilet door every time you need to go, and come with you around the house, and sometimes even just across the room, because I know you can feel truly frightened when you are not near me.
I stand quietly at the supermarket checkout while everyone stares at you barking like a dog and blowing raspberries on my arms to cope with the buzzing lights.
I stand quietly while you tell the baffled shop owner that you are looking for shoes that feel hard like splintered wood because your skin can’t bear soft things.
I stand quietly when the attendant gives us scornful looks when I ask for the key to the disabled toilet because the hand dryer noise is too overwhelming for you.
I stand quietly while the nice old lady who lives over the street tells me you wouldn’t be like this if you had siblings.
I stand quietly watching the part-cooked dinner flush down the toilet as the smell was becoming too strong for you to bear.
I stand quietly as you diligently brush your teeth even though it feels like the toothpaste is burning you.
I sit quietly while you scream at me, trying to control the panic you feel because I gently touched your head when brushing your hair.
I sit quietly while the teacher tells me she knows about autism and that you are not autistic and asks if I would benefit from some parenting classes.
I sit quietly while the GP, the occupational therapist and the paediatrician agree how bad it is but say that there are no resources to support us further.
I sit quietly while you cry because your friends say you can’t play with them anymore because you tried to change the rules once too often, even though it was only so you could cope.
I sit quietly watching you desperately try on countless items of clothing, searching your cupboards, feeling the textures, knowing that we will have to cancel your beloved horse riding lesson again because they all feel too bad to wear.
I sit quietly as you explain to me that you can go to no more birthday parties and no more clubs as people are just too scary when they are excited.
I sit quietly when my family tells me that you will grow out of it, you just need more routine and earlier bed times.
I sit quietly and rack my brains for something for you to eat as everything you try today makes you gag and wretch until your eyes stream with tears.
I sit quietly when an old friend suggests I would be better off putting you on the naughty step and taking away a beloved toy.
I sit quietly all night whilst you sleep on the cold wooden floor with your head on my leg as you are really poorly but the warm softness of the bed that should be a comfort is making you feel worse.
I sit quietly while you try to regain some kind of control over your body in a meltdown, scared and sobbing and writhing about, hitting yourself harder and harder and begging me to hit you as hard as I can too.
I lay quietly with my back to you as my smell makes you feel sick and although we both desperately want and need to cuddle, you can’t bear to.
I lay quietly beside you when you tell me that you are the wrong sort of special and the wrong sort of different and you want to die.
https://www.justgiving.com/autism-awareness-jill-finch/
It is one month until World Autism Awareness Week, so last night, rather than sit quietly googling for answers as I normally do, I wrote this open letter to share on social media. I wonder how many times people could ‘Like’ and ‘Share’ and ‘Tweet’ this over the next month? #istandquietly
I have had to learn to do these things quietly because my daughter needs me to. She is seven; bright, super funny, articulate, thoughtful and loving. She also has autism spectrum disorder. If you saw her on a good day, you’d maybe think she was a little shy and kooky. You’d maybe wonder why I am letting her wear flip-flops in the winter rain. You’ll never see her on a bad day as she can’t leave the house.*
She has severe sensory processing difficulties. A normal day exhausts her and when she feels overwhelmed, even a gentle voice trying to soothe her with loving words can be too much to process, making her feel crazy. She describes walking into a room of people as “like staring at the sun”. She’s incredibly empathetic but you may not realise as she feels her own and others’ emotions so deeply she can’t bear it, and so sometimes she has to just shut down. Forget about a hug. She is also desperately trying to come to terms with having a hidden disability that few people can understand.
This is just one story among thousands of different stories of autism, not everyone is like Rainman or like my daughter. I know it’s no great piece of prose but it’s from the heart. Thanks for reading: and I would appreciate it if you could please share to help autism awareness.
If you could donate something – however small – to help people with autism, well, that would be amazing – thank you:
https://www.justgiving.com/autism-awareness-jill-finch/
*3 months of non-stop bad days and counting, not left the house since December 3rd 2014.
This guest post was written by Jill Finch. Jill is a blogger (I think she just came out – Not out out but out – as a blogger as mean. Her writings will make you laugh and cry at the same time. I kinda dig this chick and I hope you will too… Check out her blog Dirty, Naked and Happy. You can also follow her on Twitter and Facebook. Word of caution, don’t call her stupid old fatty.
Liane Kupferberg Carter
Writer, autism advocate
Two days before our 19-year-old autistic son Mickey leaves for sleep away camp, he asks to get a haircut.
No big deal, right? But 15 years ago this would have been unthinkable.
Back then, the barbershop was the scene of some of our worst parenting moments. By 8:00 in the morning of the Dreaded Haircut Day, my husband Marc would already be muttering, “I need a scotch before I can do this” and he doesn’t even drink scotch. Bracing himself in the barber chair, Marc would clench Mickey in a bear hug and scissor-lock him with his legs. Mickey would flail frantically, headbutting his father and screaming like someone undergoing surgery without anesthesia. Customers gawked. One old man snarled, “Rotten spoiled brat.” Marc sweated through his shirt. When the barber declared he was done, I’d take Mickey into my arms. Sobbing and spent, he’d collapse against my shoulder; smearing us both with snot and hair. We tipped big. Very big.
Unable to face a repeat performance, we’d let long months go between haircuts. Mickey’s great-uncle Jack liked to tease him. “You look like a girl, buddy!” he’d say. Some days when we’d walk by that barbershop on our way elsewhere, I could swear that as soon as the barbers saw us passing, they’d quickly pull down the white shade in the window that said “Closed for Lunch.”
But today when we enter the barbershop Mickey sings out a cheery “Hi Dom!” as he plops into the chair. Dom drapes him in a maroon cape, and picks up a shaver. A screen splits in my head: I can still picture that terrified little boy, even as I watch my son, nearly a man, sitting solemnly watching his reflection in the mirror.
I wait quietly, soaking in the sounds of barbershop banter, the sports talk, the sharing of summer plans. It is all so completely ordinary. A radio is tuned to a Lite FM station; the song playing is Journey’s “Don’t Stop Believin’.” I reflect how anyone who’d seen my son all those years ago would never have believed that Mickey would one day request — insist — we take him for a haircut. Yet here we are.
“How’s this?” Dom asks. I stand beside Mickey and glance down; the cape is feathered in a field of light brown hairs, as covered as a forest floor.
“Let’s take it down a bit more,” I suggest. “Is that ok with you, Mick?”
“Yeah, Mom,” he says.
I remember how we used to sneak into his bedroom at night with a pair of shears to give him a trim as he slept. I think of the time he was 5 and we took him to a local performance by the Paperbag Players; we hadn’t known that they were going to perform a new skit called the “The Horrible, Horrendous, Hideous Haircut.” “NO!” Mickey shrieked, and every head in the audience swiveled our way.
Nowadays, Autism Speaks’ Family Services division offers a haircutting training guide for families and stylists on how to make the experience more positive, but back then there was nothing. Fortunately, one of our behavioral therapists offered to tackle the challenge. Mickey was 7 years old. She took him to the next town over — too many negative associations with our local barber — where they simply practiced strolling by a barber shop. The following week, they stood in the doorway. They progressed to sitting in the waiting area, watching other people get haircuts, then having Mickey sit in the barber chair. Eventually they introduced the cape; the shaver; the scissors. It took months, but by the time Kathy was done, Mickey was able to — miracle of miracles! — tolerate a haircut.
“This feels better,” Mickey tells me. His hair is crew cut short; I can see his scalp. I think he’s more handsome with a bit more hair. But Mickey is happy with how he looks, and that’s all that matters.
“Thanks Dom,” Mickey says softly. Dom dusts a brush with talcum powder, sweeps it across the back of Mickey’s neck. Mickey stands, turns to me and asks, “Can I have a dollar?”
I give him a $20 bill. He hands it to Dom. “Keep the change,” he says breezily. A man of the world.
“Is Dom proud of me?” Mickey asks.
“Very proud,” I say. “You know what? We’re all very proud of you.”
This whole visit to the barbershop has lasted 15 minutes. But it took us years to get here.
===
This is a guest post by Liane Kupferberg Carter. Liane’s articles and essays have appeared in many publications, including the New York Times, the Chicago Tribune, Newsday, Parents, McCall’s, Cosmopolitan, Glamour, Skirt!, and many literary journals. She has recently completed a family memoir. Connect with Liane on Facebook and Twitter, or her website.
- In: Advocacy | Autism | employment | right to work
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This is a guest post written by: Jonathan Andrews
A survey released to 5 live Breakfast has found that more than three-quarters of disabled students and graduates are afraid to let potential employers know about their disability. It is a classic dilemma for people with disabilities – and it’s one I’ve been facing myself.
I’m in my third year of an English degree at King’s College London – in fact, it’s less than two months until my dissertation is submitted and my undergraduate days come to an end. I’ve decided on my next step – a career in commercial law – and have already secured two summer vacation schemes at top firms in the hope of obtaining a training contract.
Unlike most applicants, I’m disabled. I have an autistic spectrum disorder, as well as symptoms of dyspraxia.
When I first committed myself to commercial law about a year and a half ago, I was very concerned about being open on application forms, and throughout the interview/assessment process.
My friends and family almost unanimously advised me against being open – or to “disclose”, as they put it – because of a fear that this information would be used to sift me out at the first stage of the application process.
The way they saw it was that no company would want the hassle of employing me – they’d be scared about the effects of autism on my work, and wouldn’t want to “waste” money on adjustments when they could instead hire someone who didn’t need them.
Everyone with autism is affected in different ways – I have difficulty gauging social interactions, such as how long to speak for and how long I should maintain eye contact. Contrary to the stereotype of avoiding looking at someone’s eyes, I often find my eyes can linger too long and make people uncomfortable.
I find it hard working out if somebody wants to interject or has grown bored of my talking but, unlike people with more severe autism, I can read tone of voice very well. I’m not so good at controlling my own tone and can sometimes come across as angry or blunt when I don’t mean to be.
My family and friends made some good points. I do mention my disability when applying for big corporates, but am still hesitant about disclosing to small and medium-sized businesses as they usually don’t have teams dedicated to disability research and understanding like larger firms, or might not be able to afford adjustments.
After attending a number of disability employment events, I was able to meet city graduate recruiters at large firms – including the legal, banking and energy sectors – and learn first-hand about their approach to disability and the appropriate adjustments.
So when applying for commercial law jobs, I’m now a lot more confident about disclosing that I’m on the autistic spectrum because I’m assured the information won’t be used to discriminate against me. Instead, I’m told this information will be used positively to allow me to perform to my full potential if I get the role.
Often I will only ask that my interviewers and assessors be made aware of my autism, and how it might affect my performance in an interview, allowing them to look past certain traits, avoid misinterpreting how I come across, and focus instead on the content of my answers.
If recruiters know, they then have an explanation for behaviour they’d otherwise find odd. Revealing that you are aware of this too will paint you as a confident, mature person with attention to detail and it will also show you have an interest in self-improvement.
That being said, this doesn’t mean I have no concerns at all about being open in my future career. The recent Great with Disability report that reveals that more than three-quarters of disabled graduates are afraid to let potential employers know about their disability doesn’t surprise me.
While I’m convinced that being open makes applying for graduate and entry-level roles easier, I am concerned about the low numbers of openly disabled people in higher levels of the professions; in particular, the apparent lack of any openly autistic partners or counsels in the legal sector.
It might be that nobody with autism has ever reached these positions. It’s more likely that they have, but chose to remain quiet about their impairment or may not have been diagnosed.
Either way, without open role models, I sometimes worry whether I will be able to reach those top jobs, and wonder what it is that is holding some disabled people back.
Though large law firms might have a great attitude, top jobs in the legal sector are largely client-facing, and I can’t help but worry that client concerns about disability play a large part here – so a law firm’s internal positive disability policy may not help.
I’d like employers to understand the benefits of disability – it can make people a lot more determined to achieve goals and the challenges it throws up often force us to become good problem-solvers. A different way of looking at the world is vital. Recent evidence shows how diversity – of experience, background and belief – benefits business. But if people aren’t open about their needs, then they can’t perform at their best.
I choose to tell potential employers about my disability so that, should I require any adjustments, they’ll be available – and I can walk into work and spend all my energy on doing my job rather than hiding who I am.
Must Love Fries
Posted on: September 8, 2014
Someone on Facebook recently shared this story with me. It’s about a group of kids playing a prank on a kid with autism who thinks he’s about to do the ice bucket challenge. Instead of ice-water they allegedly poured bodily fluids (urine etc.) over him.
I’m sharing the link to the news story and will leave it up to you to decide whether or not you want to watch the actual video. Between us, I haven’t been able to press play.
Unfortunately, as parents of special needs kids, these are things that we worry about all the time. What if this happens to our kids? Would they tell us? What about our kids who are not able to speak/communicate? How would we react if we knew?
What these kids did to that boy was, without a doubt, cruel and absolutely wrong. But this is learned behavior. They were not born with thoughts of doing these things. Now, this is not about laying blame at the feet of parents, however, as adults we all need to keep in mind the influence we have on the kids in our lives. How you talk about the disabled in your home determines how your kids interact with the disabled? You may mot be telling them to go out and do mean and cruel things, but if you speak of the disabled in less-than terms, they will be treated as less-than by your children. Teachers, what you say in your classroom impacts the relationship these kids have with each other? Playground and classroom hierarchies etc. manifest this way. I’m more empathetic towards kids (even though I struggle with it sometimes) who commit some of the horrific acts you hear about being done to our special needs kids/adults. But we all need to recognize that what we do and say has consequences – consequences which are sometimes borne out in ways we never saw coming.
At the end of the day I hope that whatever disciplinary action is taken involves these kids getting involved in/doing something meaningful for kids (and their families) with autism. So they get a feel of what it’s like to be in someone else’s shoes… Something called empathy.
After all we’re not born loving fries more than broccoli.
The Pitch
Posted on: July 21, 2014
- In: Advocacy | Advocay | Dos & Don'ts | Filthy Mind | Say What! | The Daily Observer
- 2 Comments
Jamaica Tallawahs Captain, Chris Gayle addresses members of the media at a press conference at the Sir Vivian Richards Cricket Grounds (CPLT20.com)
I don’t know about you but I think Chris Gayle’s recent comments in response to a question from a reporter at a press conference were totally sexist and disrespectful – And the reporter laughing is at best irrelevant and at worst heartbreaking.
In case you missed it here’s a clip of the comments (within the article)
For those who think she wasn’t offended… So what if she wasn’t? If my boss refers to a female colleague as a bitch and she’s ok with it – HELL NO it doesn’t make it right and he better think twice before he refers to me as one. I for one see that laughter though, as nervousness/I don’t know how to respond/Should I respond?/What are people going to think?/It’s Chris Gayle! I can’t challenge him. Can I?/I’m going to be labeled a feminazi. Or it will be said that I have an agenda/It’s Chris Gayle! The cricket star! So shocked and unconsciously mute now – What comes out instead? Nervous laughter… It’s a coping mechanism. Raise your hand if you’ve never witnessed it or more likely experienced it yourself.
So, yes, Chris needs to apologize – And if enough of us get together, we can make it easy for him to do so or very difficult for him not to. We have unlimited access to sports (and other) journalists online and they are always looking for stories. Well… We need to give them one. At the end of the day, the goal as I see it, is not so much to get Chris to apologize. Yes, we want that to happen and for him to recognize that what he said is unacceptable but I see it more as us preventing others from making similar utterances and understanding that what he said was totally inappropriate. You must think twice before you say stupid shit. We know… Speech is free – But – Consequences will cost you.
I haven’t seen anything about Chris Gayle’s comments on my FB timeline so I will be putting this comment on my timeline. I will also be posting this (what I’ve written here) on my blog. Is there a Twitter hashtag? I know; there are some out there who think hashtag activism is a waste of time and does nothing but I disagree with that notion. At its core it’s an awareness tool which is a big part of activism. So it’s not going to solve the problem on its own but it can make the unknown mainstream and put pressure on people to act.
Don’t even get me started on the CPL statement with their… “Chris’ comments were mere pre-match hijinks and made with no malice intended…” Seriously! Pre-match hijinks! We’re talking about a grown man here, right? And malice…! I really wonder how many people heard that and thought he meant any malice. We thought he meant something more sinister… Just creepy! He was disrespectful, plain and simple. I’m not sure about any of you but I’m deeply troubled that they continue to support him – And – their ill-advised statements make them just as bad.
Here’s an article referring to the CPL statement in The Daily Observer.
This event has many sponsors, who have been decidedly quiet. All of us need to start calling/emailing these establishments/people and let them know that you are horrified that they can continue to support the person who made such sexist comments. I would want to believe those comments he made are in direct conflict with their company’s culture of respect for all individuals – And if it is, they should say so and demand he apologizes and for CPL to retract their absurd “Mad Men era” statement and treat this matter with the seriousness and urgency it requires.
Free to Choose
Posted on: April 30, 2014
- In: Autism | Dos & Don'ts | feeling
- 2 Comments
This is a guest post by journalist Liane Kupferberg Carter. It looks at an issue I’ve often thought about. Many of you know that Kuba loves plush toys and I sometimes wonder how we’re going to mange it if he does not grow out of it – He’s eleven now and I see we get the side-eye from onlookers sometimes. In this post she gives us her perspective on her 21 year old son Mickey who loves plush toys.
On a trip to Arizona three years ago, my son Mickey asked to visit the airport gift shop. He rummaged through a display of stuffed animals. “Hey there little fella,” he said, clutching a small stuffed bear to his chest. For the next hour until it was time to board, he walked through the airport gripping his new toy.
For years therapists have urged us to encourage more “age-appropriate” interests. We have. But at 21, Mickey is still drawn to Sesame Street characters. His bed is piled with so many plush toys there’s no room to roll over. He sleeps with a large Sponge Bob pillow.
I’ve come to wonder if wanting him to be more age-appropriate says more about our comfort level than about Mickey’s development.
Professionals tell us he has a “spiky” profile: test scores show an uneven scatter of strengths and challenges. His interests are spiky too. He does have what would be considered age interests suitable to his age: he loves watching sports. He enjoys hanging out the mall, eating at the food court and buying t-shirts at Banana Republic (which he calls “The Gentleman’s Store.”) He wears Beats headphones to listen to music—Raffi as well as rock. We encourage his interest in championships, players, team rankings and game rules, which gives him conversational currency with peers.
But if carrying a small Sesame Street Grover beanie in his pocket makes him feel safe, why shouldn’t he? Don’t we all have our transitional objects, or habits and rituals that reassure? How many adults panic at the idea of leaving home without a smart phone? Why do we expect our children on the spectrum to be paragons of age-appropriate maturity, when we ourselves frequently choose age-inappropriate activities or interests? One of my husband Marc’s favorite movies (sorry hon, I’m outing you here) is the animated Pixar flick “The Incredibles.”
Instead of focusing on having age appropriate interests, wouldn’t we all be better off focusing on teaching our kids the appropriate times and places to pursue those interests? Listening to Muppet music on an iPod with ear buds is fine; carrying a Muppets backpack is not. I don’t want anyone bullying him.
When Mickey was a toddler, he was evaluated by Dr. Stanley Greenspan, the architect of Floor-time Therapy, a developmentally-based intervention that stresses following your child’s lead. Dr. Greenspan taught us to enter into Mickey’s interests. “Those passions are the window to your son’s emotional life,” he said.
Last night when I poked my head in his room, Mickey was engrossed with his iPad. “I’m watching Snoopy,” he told me. “He’s for everyone. Come see.”
I sat beside him. “Looks like Snoopy is doing his happy dance.”
“Yes!” he said. “I’m getting ready for my play date with Jake this weekend. Jake loves Snoopy.” I shared that with Jake’s mother. “Aw,” she said.
“I struggled for years to come to terms with him skipping down the halls and singing Barney songs.”
The bottom line is this: Mickey works hard all day to meet other people’s expectations of suitable behavior. If he wants to watch blooper reels from “Reading Rainbow” and outtakes from “The Muppets Movie” when he gets home, that’s fine. Why shouldn’t he seek out things that comfort or amuse him? We all do. Marc and I have watched so many “Seinfeld” reruns we could do a responsive reading of the dialogue. (Not that there’s anything wrong with that.)
It’s his leisure time, not ours. Mickey gets to choose. I respect his choices because I respect him. I’ve stopped caring if his interests don’t fit someone else’s idea of appropriate.
As long as they’re appropriate for him.
This article was originally published on Autism After 16 by Liane Kupferberg Carter. Liane is the mother of two adult sons, one of whom has autism and epilepsy. Liane is a journalist whose articles and essays have appeared in more than 40 publications. As a community activist, she has worked with both national and local organizations.
“Light It Up Blue” is a global campaign that sees thousands of iconic landmarks, cities and towns around the world turn blue on April 2 to recognize World Autism Awareness Day. The campaign highlights the pressing need for greater public education and awareness of autism in our community.
I’m proud to have initiated Antigua’s participation in this campaign for the first time – BUT – I need your help to make it a success and for us to send a strong message to everyone that the Antiguan community is united in our efforts in supporting and celebrating people with autism and increasing awareness about this disorder.
Need some inspiration? Here are a few ways you can ‘Light It Up Blue” on April 2!
- Get your school involved: Host a “Blue Day” fundraiser at your school. Blue cake stalls, wear something blue, blue face painting, blue art day – The ideas are endless!
- Get your workplace involved: Ask clients and colleagues to take part in a “Wear Blue” fundraiser for World Autism Awareness Day. Get creative and have some fun!
- Promote this “Light It Up Blue” campaign via your social media! Share stories (news or personal ones).
- Light up your Facebook, Twitter, WhatsApp, BBM profile: Change your profile photo to the “Light It Up Blue” logo or any other Autism Awareness graphic – Check out Google Images, there are tons!
- Take lots of photos of any awareness activities/events you host: Share photos on Facebook, Twitter, Instagram etc. Would so love if you could tag me (@sackr) in them! You can also email your photos to salma.crump@gmail.com.
- Purchase autism awareness merchandise and wear/use it proudly! A great range of products available online.
- Contact your MP or anyone running for office and tell them all about World Autism Awareness Day/Month and why it’s so important to you!
See… It’s so easy to get involved.
It’s not only awareness that is being raised when our FB profiles are lit up. We are also helping build understanding of what it means to be affected by autism and building compassion for those with autism and their loved ones.
On Wednesday, April 2, 2014 (and throughout the month) together – we can unite the world in their honor and for their benefit.
NOTE: Any funds you raise can go towards an organization of your choice that supports the advancement of kids/adults with autism or help start a program in your neighborhood school, a more inclusive kiddies program in your church… It’s totally up to you!
The Inconvenient Child
Posted on: February 10, 2014
My open letter to the Hon. Minister of Education, Dr. Jacqui Quinn-Leandro…
I’m saddened and distressed by the state of affairs with regards to special education in this country.
We hear “It’s a priority” so often and still nothing gets done so I’ve now become numb to the promises made. I guess one thing can be said – There’s been some consistency where this issue is concerned and that is, nothing gets done. How tragic.
This year I made a special effort to listen to the Hon. Minister of Education, Jacqui Quinn-Lenadro’s speech regarding the recent budget. At one point, the Minister expressed how painful it was for her to see an unfinished structure at the Antigua State College campus for such an extended period. Painful! It pains her to see an unfinished building – that I may add – she’s right, it should be finished – BUT – perhaps I missed this, but I’ve never heard the Minister sounding this pained when she talks about special need children and how they continue to be shortchanged by the education system. Children! Not blocks! People! Or is it just the parents who should feel this pain? Newsflash! We’re feeling it! Newsflash! We can’t take it anymore!
So, since we’re on the subject of pain. Here’s what pains me…
The way the authorities run to their back-up responses of arts and crafts, vocational when the subject of special education comes up. Arts and crafts/vocational, though good is not the be-all and end-all of our children. Are we as parents to assume that that’s what it means to you – And – that is the breadth of the experience they will have in the system?
I am saddened that you and too many others continue to apologize and make excuses for the lack of any real, and thoughtful plans to address the needs of these students – actions that continue to be disastrous for so many. Quit holding out the “Coming Soon” carrot stick! We’re not rabbits! After all, at what point should we get fed-up of hearing “We’re working on something” or “We’re looking at it”. So you’re looking at it, we’re looking for it and our children get absolutely nothing from it. Just great! Words don’t help our children. Good programs/policies that are enforced do.
Here is your record…
You started out by saying the Ministry of Education will be making special education a priority. Every time I think of this I remember a quote from Mahatma Gandhi which says; “Actions expresses priorities”. My interpretation of this is that people take action on the things they deem important. I guess in a sense the Ministry’s inaction has pushed me to keep fighting for my child’s (and others like him) educational rights. So I’m going to keep demanding, over and over and over again for better more meaningful change. “We don’t have enough money” is no longer acceptable or defensible for bad education policies and programs.
You then said that you will be setting up a diagnostic center: We’re still waiting for this to even start. By the way, should we be concerned by the track record of the new public library? In a Daily Observer article on November 19th, 2011 the Minister stated: “Our fine team at the Board of Education has just completed an estimate of the cost of converting the building (referring to a building on Nugent Ave.) into a functional child-friendly centre, and we have included this expenditure into the 2012 budget,” – What happened Minister? Ok… You missed the ball in 2012 and again in 2013 – But… Believe me folks it will happen in 2014! Give me a minute please because I’m gagging on this giant-sized pill I’m being fed now. I’ve said this before – But – year after year we hear of an education budget but it’s difficult to say whether there is any correlation between the amount spent on the education system and its ability to be effective in responding to diversity. So you don’t have enough? Let us see what you’re doing with what you have. It’s your responsibility to tell us.
A Special Education Council was put in place… Good move: An advisory council could potentially assist the Ministry with drafting policies/programs/plans/reviewing budgets and giving guidance (relating to special education) on how to put those plans into action. Where I think you went wrong: Instead of looking as far as the eye can see with regards to assembling a diverse group to sit on this council – You, looked outside your office door. That‘s the only conclusion I could arrive at to explain why you would elect a senior executive within the Ministry as the Chair of this council – Added to that the other members (with the exception of one) are all Ministry execs.
By all means, this is not an attack on the competencies of the individuals who sit on the council but they are Ministry staffers and are conflicted, therefore, in providing independent advice to you. The council is unlikely to recommend actions deemed unfavorable by you or criticize any decisions that have been made by the Ministry. Therefore you and your team cannot receive the objective advice needed in order to make intelligent decisions. This clearly demonstrates a lack of understanding of the processes of thoughtful planning which the provision of special education services require.
More teachers have been trained in Special Education: This is absolutely great! But Minister, please explain why this benefit hasn’t trickled down to the point of making more of a difference for our children who are in the classrooms now. How do these new specialist teachers entering the system fit into the overall plan? What is the big picture? Is there a big picture?
The ratification of the UN Convention on the Rights of Persons with Disabilities: The new political ping-pong – Politicians climbing over each other to see who can be the most politically correct and use the most buzz-words. To that I say; “How convenient.” We don’t address it for years then all of a sudden it shows up in a budget speech. Did we just find the conscience we lost? When Antigua signed on to this convention in 2007, put in place by the United Nations, were we doing it for the betterment of our citizens or was it just for show?
The Ministry has managed to do very little because many parents/advocates either can’t, won’t or don’t know how to challenge them. I have to be honest though, sometimes I feel like I’m being ignored to the point of exhaustion (didn’t know this was possible) within a system that is so inherently flawed that the authorities think nothing about being satisfied with the status quo. It’s embarrassing, the awful reputation our public schools have when it comes to special education. How can we change that?
These children may have a disability and they may need accommodations to access the educational curriculum but they are worthy of the same high expectations that is placed on our typical children. So hopefully you agree that we must have high expectations of education authorities. After all it’s the high expectations that we have today which will prepare them for a life of independence in the future. I refuse to raise a child for a life of dependence on social programs and dollars! Or worse! I very much doubt you, or any other Member of Parliament, would be happy with that situation for your own children, yet so many in government are complicit by their silence on the issue. I’m not wishing for any MP to have to raise a child with special needs but perhaps you would all feel somewhat differently about the matter if you had to.
Here we are, celebrating Education Week under the theme “Every Learner Achieves: A Call for Greater Commitment” but from where I sit it does not appear as if we truly believe in that theme. That every learner can achieve – And when the authorities call for greater commitment. Who is this call going out to? Commitment is not a one-way street. Education officials are always quick to tout the importance of the involvement of parents as stakeholders in the education of their child but when parents do get involved it appears as if your involvement is only wanted on their terms. So we’re “good” once we’re singing from the same hymn-sheet but once I challenge you… Now, I know there are some who have no tolerance for this sort of emotional honesty in communication – But I refuse to give unthinking respect to anyone/group/thing. It’s not happening!
So, no more phony consultations to provide window-dressing for progress. We don’t want that! We want real dialogue that asks all partners to help define the barriers and consider how they can contribute to solving them. I’m ready to do whatever it takes. What about you?
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I know I’ve been a bit tardy with my posts but in my defense… I do have a lot of stories to tell you but they just sometimes come to me at the worst times when I’m not able to write any of it down. For me to get something out I have to drop everything and just focus on writing or else you’re just going to get crap – And you know that would be a big step down from the literary masterpieces you’ve grown accustomed to. You’re welcome but no need to thank me it’s the least I can do.
You know that in my posts I’m either pissed-off or funny – But – I’m trying to mellow out because I’m getting older and somehow I never remember the funny stuff after they’ve happened. So in honor of my birthday I’ve decided that moving forward I’m going to work on striking a balance. So, as a part of the process I need to first confess a few things.
1. Ok… Let’s start off with what you know is one of my biggest fears, which is to be seen in faded underwear. I’m happy to confess though that I’m over it. Now, I worry about being taken to the ER in my spanx. Shhh… Sometimes it’s full-body spanx. It will be a couple hundred dollars down the tube if they have to cut it off of me. My mom is to blame for all this nutty behavior. One day I was stripping in front of my mom… SIDE NOTE: Get your damn mind out the gutter cause this ain’t no freak shit.
Back to what I was saying… So I’m taking my clothes off and she shouts out “Oh my God! How much clothes do you have on? Try nuh tek-een dung de road. Translation: I hope you don’t faint/pass-out when you get to where you’re going.” Now I can’t stop worrying. SIDE NOTE: I no longer watch the ER Trauma shows. Now I want everything that happens to me to be a surprise.
2. I think I’m ready to try my hand at being a lawyer or maybe being a cop. I’ve been binge-watching Law & Order all year. Actually this is not really a confession – Just wanted you to know about the new skills that I’ve acquired. I can spot a perp anywhere.
3. Ok… I’m no longer day-dreaming about quitting my job and cutting coupons so I can appear of TLC’s “Extreme Couponing”. I now realize that I need my job – BUT – I want my own reality show. Who wants to get paid to be my friend on it?
4. I’m way past my annual check-up. Because of my job, I’m having difficulty finding a gynecologist who does not know my name, recognize me or both. So now I’m back to wanting to quit my job. Some background… I went through a lot to trouble seeking out a doc that I’ve never been to before for my last check-up. So, I get there and I’m in plain clothes. SIDE NOTE: OMG! I tell you I could be a cop… Plain clothes (Not exactly what plain clothes means for me though).
Anyway… I walk into the lobby and immediately think, “Shit! I know all the staff here. Not good.” So I do all the preliminaries – At one point I thought that my blood pressure reading would be off the charts because I’m going a little nut-so hoping that the doc doesn’t walk out, see me, and start a conversation as if they know me. I would have passed out for real – And I wasn’t even wearing any spanx. I know… Totally nut-so.
That didn’t happen and I wait to go into the exam room. So it’s now my turn. The doc introduces himself to me and we exchange some pleasantries then the doc directs me to a room where I can strip… SIDE NOTE: Man! This is the second time I’m talking about stripping in one post. That could be good (suki suki) or bad (still suki suki…?) Back to the story… So I strip and put on a gown. SIDE NOTE: Yes, I think seriously now I want to quit my job because I need to spend some time coming up with a design to replace those gowns. Maybe crotch-less pants or… I don’t know but… If you’ve ever been in one (patient gown) you know what I mean.
So, I get back in the exam room and get up on the bed the doc starts asking me questions about myself, family history etc. At this time I’m still just sitting on the exam bed. Then the doc says to me, “Lie back and put your legs up. SIDE NOTE: The doc is about to go take a look at the best view in the world.
Still talking to me, I guess in an effort to make me comfortable. So… Pause… Exam for a minute or two then, out of the blue says; “Oh, so you’re Salma Crump!” I was like, “F ME DEN!” To myself, to myself, I said it to myself! Translation: “F ME! Nothing else, that’s it. The word “den” is just our way of vocalizing an exclamation point.
After that it was like my knees had a mind of their own because they were closing like a vice grip. I swear, I was told to relax about ten times after that. There was more talk after that but I would be lying if I told you what it was about. I couldn’t process anything else other than the Queen Victoria Expose which was unfolding right in front of me. And that is; ladies and gentlemen why I’m way past due with my check-up. You see, I just prefer when my doc gets to know Queen Victoria before they get to know Salma Crump. Please… Don’t judge me.
5. When your kids ask for toys; don’t make any assumptions, just check the toys out before you say yes. So, leading up to Christmas Kuba has been asking for the Animaniacs toys. He’s been into this cartoon lately. He would say to me (at least 5 times a day): “Mom, I want the Animaniacs plush toys for Christmas – Yakko Warner, Wakko Warner and the Warner sister Dot.” Yes, my kid is very specific. As it got closer to Christmas I decide to go check out the toys online.
I go to Amazon first. My search returns only one of them. I try all sorts of different searches but still the only one and it was about $45. I’m thinking to myself, “What the hell is wrong with this seller”. Anyway I go to ebay now. I get a few results but not as many as I think and I notice that the prices are along the same lines and some even more than 45 bucks. Then it occurs to me that I haven’t seen a description which says “new” yet. Folks, the toys are collectible items. The three stuffed toys are about to cost us about 150 bucks. What the hell did I get myself into! And it’s just like my kid to want vintage toys. It’s not that we’re opposed to spending this amount – But – on stuffed toys? Aren’t these supposed to sell for like 5 bucks? Now that is a bill I would support. So, the moral of the story is; check out the toys before you say yes. Your pocketbook will thank you. We’re suckers though… We bought the toys. SIDE NOTE: Even PayPal sent me an email after the purchase saying: ‘Come on man… Really!”
6. I’m still eating things (albeit less of it) which had a face prior to hitting my plate.
7. Ok… Never wear black pants or black underwear on planes. Actually stay away from black while traveling. For the second time in my life I bared my ass while traveling. This time it happened after I got off the plane. I take that back. I’m really not sure when it happened. All I know is that Kuba and I had just got off the plane after a long day of travel, numerous lines, escalators, and thousands of people – Only the have my sister greet me in arrivals, give me a hug then say… “Turn around, yuh nuh wan hole in yuh batum?” Translation: “Turn around… You know there’s a hole in your bottom?”
SIDE NOTE: Guys, think about that for a second. This is what we call a double entendre, which, in literary terms means that what she’s just asked me could be interpreted in two ways; especially one having a meaning that is indelicate. And I don’t know about you but I consider all the holes on my body to be very delicate and any reference to them should be done with all sensitivity.
So what do I do? I reach for my ass. Long story short… It had turned into a city with a drug problem.
Imagine the horror. The first thought was Kuba. My only son, who came forth from my loins the one who had traveled with me ALL DAY! By the way, does loin mean vagina or womb? SIDE NOTE: I call Charlton to ask him. He’s like my ghost busters. You know… Who you’re gonna call…
Me: What is loins? Is it my vagina or my womb?
Charlton: Loins… What is this about?
Me: I’m trying to figure out where Kuba came from
Charlton: (silence)
Me: You there?
Charlton: Really?
Me: You know when folks say he came forth from my loins. What do they mean?
Charlton: It’s mine. He came from me
Me: How do you know?
Charlton: That’s what it means. My seed
Me: (silence) – I’m thinking that whatever I say could potentially give this convo new meaning
Me: I thought he came from my loins? So it is my bowels then?
Charlton: Yes
Me: Yes… He came from my bowels? Why does it have to be my bowels?
Charlton: He came from your gut right?
Me: Well… I guess
Charlton: Ok then
Me: So because he came from my gut that means he came from my bowels?
Charlton: I’m pretty sure it’s that but I’ll go research it
Me: I’ll go research too
SIDE NOTE: It’s on like Donkey Kong!
Anyway… Where was I again? Ok, right here… So my ass is ripped. Not “ripped” like “ripped” – I am working on that though – But – “ripped” like the seam broke and it’s “crack city” baby. One sec, back to loins for a minute … If Charlton is right –although I’m still researching, and Kuba came from his loins then I guess my dad’s own was a bit watery. Because if it wasn’t then maybe I would have more (literally… more) of an ass that is “ripped like ripped”. Sorry mom. But you were right when you said that we stood in the “bubby line” too long. Translation: “breast line”.
SIDE NOTE: I know; I have a serious problem with staying on topic. I’m working on it.
So my one and only son who came forth from my loins (yes… whatever… my research is not complete), the one who had traveled with me ALL DAY said not a word! Guys, we literally went up escalators where there were folks behind me whose head was in my direct fart line. And it was “Silent Saturday”… They wouldn’t have seen it coming at all.
SIDE NOTE: My apologies Princess. Everyone, I’m friends with a real Princess and she frowns when I talk about farts. She says it’s not becoming. So I’ve promised her that I will no longer talk about it here. So, from to the ones who are turning up your noses right now but you know you’re a closet fart lover. Here’s one for old times’ sake…
8. I think most people get farts all wrong. Too often they’re misinterpreted. I think they’re just a non-verbal way for you to say; “hey, you’re cool, I like you” or in the case of a stranger a nice “hello there”. I’m about to share something very special with you. Cause you’re my homie. It’s a day-of-the-week calendar that I’m considering printing and sharing with all my friends, which includes you. I know… No need to thank me.
Ok… Here goes the Fartdar.
Monster Mondays: Not what you’re thinking. It’s all noise and no real action
Time Bomb Tuesdays: These just escape like at all the wrong damn times. You let someone in your car; you’re in a full dressing room at Khols with your son the fart police.
Wicked Wednesdays: Run for your life
To Be Named Thursdays: Seriously… These could fit any profile
Funky Fridays: How it affects the senses is anyone’s guess
Like I mentioned Saturday’s are “Silent”: …………………………….. Deadly!
Savor the Sundays: Just let it out man. It’s just a gentle breeze. When it happens your… Hmmm squeeze…
SIDE NOTE: Feeling a bit sad now. Think I just lost a friend.
9. Ok, I’m no longer going to deny it. I naturally walk like I’m about to kick someone’s ass. However, I desperately want to learn how to walk sexy. There is no mood-killer worse than walking towards your man doing your sexiest stride and he asks you; “What did I do now? What are you upset about?” Little does he know that it’s because I’m concentrating so hard on walking and wining that my face is all scrunched-up and added to that my arms out at the sides, that I look mad.
10. The one checkup that I was looking forward to most after giving birth was… Ok, wait a second. This is just between us. Ok… What I was looking forward to most was my six week postpartum check-up where my doctor said…
“You’re free to resume sexual activity now.”
Thank you Jesus! I can take off the “Gone on Vacation”, “Extended Leave”, “Laid Off” sign off my vagina. I tell you… It couldn’t have happened soon enough. Any day I would have started to hump Charlton’s leg like a dog. I think I started humming something from Marvin Gaye right in the doctor’s office.
It has become one of Charlton’s “remember when…” moments. To this day when Queen Victoria “acts” dead he says… “Remember when…”
11. Sometimes I forget how old I am. Someone asked me the other day how old I was going to be on my birthday and I was… “Ahhh… 2014 minus 1977 – Seven from four… You can’t – Go over to the one and borrow one…
I eventually did the all the calculations in my head. Took me only a few minutes. Then I said 37.
Happy birthday me! Was actually a few days ago… I’m working on my timing.
I think it’s still cool to say Happy New Year. Happy New Year to you!
momtuition 