You have moments of weakness
You have moments of strength
Then you pick up the pieces
Your purpose is destined
Whether you believe it or not
Your purpose is greatness
Beyond any and all expectations
Trust… and all will unfold.
You only see what I choose to show you.
My face is a mask to hide the pain inside.
If you see a smile, you have no way of knowing if it’s genuine or not.
Know that it isn’t a facade.
Know that it’s a means of protection.
My flawless public appearance hides my private despair.
You don’t care to know.
You don’t care to understand.
You see what you want to see.
You only see what I choose to show you.
Yesterday marked the annual Secondary Education Assessment (SEA)… that revered examination from which a child’s future success is determined. The test that almost always decides the advancement of children in today’s society. Yes, there are those who did not achieve their desired results and went on to incredible success later in life. But the reality is that for many, this examination is the beginning of achievement or struggle.
SEA came about in 2001 as a supposed improvement over the colonial Common Entrance exam. Call it what you want but it’s not improvement. In Trinidad, up to 1968, secondary school education wasn’t free to the general population. However, a select number of students who achieved success through the College Exhibition, were granted the opportunity to free secondary education. The College Exhibition was later replaced by the Common Entrance Examination, but even with the introduction of free secondary education, there was a prestige established by the exam. The previously existing schools catered to the higher classes of society, who had the financial resources to pay for their children’s education and it was of paramount importance to maintain that standard of separation. Additional secondary schools were established, but they were not on an even footing. They didn’t have the finances to be properly run, inexperienced teachers and a system still being fine-tuned.
50 years later and we still can’t figure this out. The prestige schools in the 1970s are still the prestige schools of today. Parents are known to bestow huge rewards on their children for success and to severely punish if their placement is not to the desired standard of excellence. Primary schools focus only on language and mathematics, to the detriment of art, music and sports, because those activities will supposedly have no bearing on success at SEA. At home, children are subjected to hours of homework and revision, with no time for play or relaxation. Children from the age of 9 are suffering from anxiety, nightmares, headaches, depression and countless other behaviors, stemming from this examination. Children have committed suicide due to the pressures arising from this day. And as much as some parents may try to hide their own emotions, they are also contributing their negative energies to an already volatile child.
Don’t get me wrong… I’m not blaming parents. I believe that the vast majority are doing their best with the skills that they have. They believe that a “prestige” secondary school is going to provide a doorway to better. They know that their kids are under pressure but in many instances, don’t know what to do about it. My question is… why aren’t we pressuring the government and ministry of education to make changes? Why isn’t this a more prevalent issue at election time? Strength is in numbers and if 18000 children are sitting this exam annually, that’s a lot of parents whose voices can be heard if they unite.
I wish that I could take credit for this post, but my mind would never have captured these sentiments so eloquently. Tracy Hutchinson Wallace has been my guide and rock from day #1. As the other half to our support group Autism Spirit, I have always explained our personalities as 2 sides of a coin… balancing, yet complementing each other. I’m the emotional, heart on my sleeve personality and she’s the pragmatic, educational aspect. But I think we are continuously rubbing off on each other and it results in this. That piece of writing that explains perfectly the logistical issues of the medical model of treating autism while exploring the challenges that can be experienced when the views of #ActualAutistics are pushed to the side.
A very brave therapist reached out to me the other day. I say “brave” because I know that my social media self (and me IRL if you are unlucky 😉 ) can be very offputting at times! Anyway, the therapist pointed out that professionals are easy targets for the anger and frustration of parents and disabled communities. They felt that we forget sometimes that they are not just service providers but humans with, often, a significant personal motivation for doing what they do. This was my response…
“Thank you for reaching out. Here’s the thing, you are correct that professionals are seen as service providers. And therein lies the problem. They should behave as if they are PARTNERS and ALLIES, offering supports, accommodations, education AND services to and for Autistics, not neurotypicals. Unfortunately, the medical model of Autism persists in trying to “cure” or “fix” Autistics, despite valid concerns and supporting evidence of the permanent damage inflicted by that attitude. It is disheartening, to put it mildly, to see this attitude demonstrated by a group that is governed by the rule “first do no harm”. It is “privilege” demonstrated in the worst way.
Therapists, as a group, claim to support Autistics, and yet:
- you still use person-first language and functioning labels
- you still design, promote and implement methodologies to “help” Autistics be “more” neurotypical
- you “don’t have a major issue with the information that Autism Speaks puts out, even though that information and the organisation itself promotes an inimical, malignant view of Autism – that’s a disconnect that only neurotypicals can afford to live with
- you don’t use your influence in the public arena to change attitudes of laymen towards disabilities
- you don’t support the view that Autistics should be at the centre of, and drivers of Autism research, instead of being marginalized or ignored
And worst of all:
- you actively profit from your actions or the lack thereof.
Understand, I too was heading in your professional direction before life laid out another path, so I have no problem with people getting paid. I do not accept, however, getting paid to maintain the status quo, when that state is actively detrimental to your patients. Even professionals with personal knowledge of Autism are guilty of this.
Small wonder that Autistics are hostile – you are helping to make life harder for them, not easier. So, for the most part, you “look fuh what yuh get” as we say in the Trini parlance.
Look, it is commendable that your “deep personal connection” to Autism has inspired you and others to do what you do. From what I understand, #ActualAutistics, more than any other group in the various Autism communities, laud your respect for the privacy of your family members and loved ones. But they don’t need you to “advocate as a regular citizen”. When you do that, you are DELIBERATELY withholding two of your most potent weapons in the fight for Autism acceptance:
- first, society’s general acceptance and respect for the knowledge and expertise and experiences of medical professionals, and
- second, for those professionals who are not the primary caregivers, supporters and guardians of Autistics, the extra energy you generally can spare to be allies for ALL Autistics.
Some parental and family allies have the extra spoons to advocate for every Autistic; most don’t, and we could really do with the support and influence wielded by professionals who don’t actively have skin in the game.
If you really want to improve the quality of life for the spectrum of neurodiverse humanity, then don’t just exercise your profession, conduct your therapies and get paid. Instead, listen to actual Autistics, follow their lead in advocacy, make the needs of Autistics the centre of whatever you do and say, and use your privilege wisely. Be an Ally, not an anchor around their necks.”
If you are interested in the work our support group does, please check out this link http://www.facebook.com/autismspirit
I love my son. I hate being an advocate.
The activism and advocacy part of this journey is something I never went looking for. And as much as I would never want to change my child, I would gladly give this part up in a heartbeat. With every choice I make, my intention is always in the best interests of him.
Advocacy was something forced upon me or maybe I stumbled into it. I didn’t suddenly wake up one morning and decide I’m going to spend hours every single day fighting for basic human rights. I didn’t decide that I would prefer to spend countless hours researching United Nations Conventions and laws applicable to where I live, instead of spending quality time with my son.
I didn’t choose to become a speech therapist, an occupational therapist, a psychologist, a nutritionist, a food therapist, an administrative assistant, a financial planner, a teacher… all self-learnt and without the benefit of years of professional studying and training. All I wanted was to be a mummy.
Unless you’re in our shoes, I’m not sure that you can totally wrap your mind around the fact that being a parent of a child with special needs is tough. And depending on where you live, it can be even more difficult. We wait 15 months or longer for an appointment to diagnose. If we choose to pay privately, we pay in excess of US$1000. There is no publicly available speech or occupational therapy. So we have to pay at least US$50 per session. There is a special needs grant of approximately US$120 monthly. But your eligibility is determined through means testing. So if you have a job or own a house, you are not going to be approved. Disregard the fact that your job is less than minimum wage. Disregard any of your expenses. Disregard that your house was inherited and is little more than a roof over your heads.
We have to hope that we can find a school willing to accept our children and then be faced with the criticism that our children are “disobedient and lack discipline” when the reality is that they are misunderstood and few are willing to go the extra mile to care.
We watch as our children are ignored by “friends and family” who think it’s too much trouble, so they don’t invite us to parties or outings. And then we try, often without success, to pick up the pieces of their broken self-esteem and help them glue those pieces back together.
I’m not frustrated; I passed that stage a long time now. I’m not angry either; it’s a wasted emotion that doesn’t change or improve anything. I’m tired: mentally, physically, emotionally tired! I want to be able to play with my child and spontaneously go to the movies… not plan a half hour trip, 2 days in advance because I have to think what time will have the least people and there won’t be as much noise, but it won’t be very bright outside because it will hurt his eyes and will there be anything that he will eat or is the cinema out of stock of plain cheese pizzas? And trust me when I say that being out of pizza will lead to a meltdown.
There’s my vent and rant of the week. The people who are on the same journey will understand what I’m saying. The people who have not stepped into my shoes will likely scratch their heads and think that I don’t care about my son or I wouldn’t say these things. Some may try to understand and I’ve always believed that if I am able to reach just one person, that counts as a victory. Now I’ll go back to my son and continue to try my best to make this world a better place for him.
Photo credit by THW 💙