Back to School

Today represents almost 2 years of homeschooling! Some of the pros:

  • We can sleep late! 😁
  • Homeschooling is substantially more affordable!
  • We set our own schedule and go at our own pace. If we feel to skip a day and go to the movies, we sometimes do that!
  • We can pick exciting topics which may not necessarily be covered in a traditional school curriculum.
  • Our focus is learning, not preparing for exams.

But there is also a bittersweet perspective. For us, homeschooling was not a deliberate path. It was a decision made out of necessity. A choice because we had no choice! I saw my son struggling so much with his social anxiety and his dysgraphia that I feared allowing him to continue in his neurotypical school would be detrimental to his health and overall development. The unfortunate reality was the lack of alternatives: zero publicly funded special needs schools equipped to deal with his challenges and private schools which were beyond our finances.

On a day like today, I look at all the back to school photos, proud parents and smiling kids, and I’m reminded of what we don’t have. I’m grateful for the opportunity to homeschool, the flexibility in my work to allow me the time and the progress that has come with that decision. But I’m also sad for the opportunities that my son may be missing. I’m tired of the constant juggling of full-time work, special needs advocacy and single mama-hood. I’m always second guessing myself and wondering how I can approach things differently and how I can make this easier for both of us. So to those moms and dads, who get to count down the days until school re-opens, always know that this isn’t a luxury open to all parents. Be sure to enjoy 😉

I know in my heart that this was the right decision for us and will open up paths that we never imagined. But sometimes the journey is tough!

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Education or Torture

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.

 

Finding my passion

In 2012, I was officially diagnosed with major depressive disorder and anxiety. Truthfully, this was something I had always battled with, but getting it on paper meant confronting the demons. I finally understood that this wasn’t a bad day or week. This was something that I needed to accept was going to be present, probably for the rest of my life. I fought the perceived stigma of taking anti-depressants for years until I realized that if I didn’t, my suicidal ideation would eventually become a reality and my son would wake up one morning without a mother. I took 3 different tablets before I found the one that worked for me.

In the following months, I was forced into a great deal of introspection and slowly, the realization hit that I was not getting as much joy from my work, as I had in the past. I started wondering if my state of mind was boredom and stagnancy… maybe 12 years with one company had made me lose my drive for more. The undeniable fact sank in that I didn’t want to be in the corporate world anymore. But what do you do when all of your education has prepared you for the path that you no longer want to follow?

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Some people may think that maybe I chose the wrong path. But I always loved sciences and still do. I pursued my Bachelor of Science degree in Chemistry and Biochemistry and then followed with my Master of Science degree in Food Science and Technology. Those choices always felt right and allowed me a very comfortable career. Why then did I suddenly feel as though I had made the wrong decision? And was it possible to fix at this stage of my life?

I restarted practising yoga with no other intention than relaxation and after a few months, my yoga teacher offered her first training program… a 500 hour Yoga Alliance certified program. Some aspects were opened to the public as individual sessions and I signed up for all. Those sessions dealt a lot with yoga philosophy and really understanding the roots of where yoga came from. As soon as I attended, I knew without a doubt that I wanted to do this training.

I started planning for 2014. Being a single mother with a recently diagnosed autistic son didn’t make matters easy. However, planning a year in advance was a huge advantage. Godparents were called on for babysitting duties and support as I embarked on yoga teacher training in 2014.

On the 2nd day of training, I told my yoga teacher that I wanted to do this full time. As much as she wanted to, I’m not sure she believed me. But all of the ambiguity in my life suddenly made sense. Turning my back on 14 years of building my career to become a yoga teacher, with an unreliable income, having to hunt for work made sense. And if you don’t know me… I’m a Type A personality, very OCD, Virgo, who plans my life to a T. Yet casting everything to the wind somehow made me feel more confident and secure than I had in years.

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I spent the next two years fine-tuning my skills and building my financial safety net. On February 12th 2016, I officially left the corporate world and adopted the new job title of yoga instructor.

Fast forward two years… no regrets but sometimes worrying moments. Finances are tighter than when I had the luxury of a consistent, unvarying pay cheque, but so far I’ve been comfortable and blessed. The one lesson I’ve learnt is that you cannot put a price on peace of mind. I’ve now made peace with myself that my depression and anxiety are not something I can snap out of. They are as a result of a chemical imbalance and I will likely be on medication for the rest of my life. But I’m ok with that. And being in a profession that allows my mental strength to develop is always a benefit. Having a profession that allows me to be connected with a passion that I never imagined possible brings me a greater level of positivity and joy which never previously existed in my life.

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Yoga is an experience that will transform your thinking, your views on life and the world. Working hard for something that you love is called passion and I have found my passion in yoga.

Why I am a passionate autism mama

I am an autism mama: proudly, unabashedly and passionately. But why am I so passionate?

Because I saw eleven Primary schools refuse my son admission with no explanation other than a half-hearted “we’re not sure he’s ready”. The same child who was talking in full sentences at 14 months, knew his alphabet at 16 months and could count to 20 by 18 months.

Because when autism first entered our thoughts, I was told that I had to wait 18 months to get him diagnosed through the public sector.

Because I feared having to give up my job and face possible bankruptcy because there were no schools available or willing to accept him and I didn’t know what else I could do with him while waiting those 18 months.

Because I sought every resource through the Ministry of Education and am still waiting four years later for a response either for a school, an aide or any form of assistance.

Because at 6 years of age, my son told me he would prefer to be dead than having to deal with the emotional and social challenges that stymie him daily.

Because I started interacting with other autism parents and saw that my fight was not unique, that being a stay-at-home parent was a necessity, that inclusive education was a myth.

Because I saw what the average parent is able to access for their child and what they can take for granted… free education and healthcare. And while they have their flaws, they are still accessible.

Because I saw how skewed the average person’s perception of autism was and I knew that needed to change.

Because I’m a single mama and if I didn’t fight towards making a different world for my son, nobody else would.

I never asked for this. My son is my life, my reason for living. Every single part of my heart, every action in my life is always with him in mind. I’m not seeking fame or publicity. All I’m trying to do is change people’s perceptions so that with each new person reached, there can be a cascading effect towards the public’s view of autism… so that by the time my son is an adult, he will have a safe world that is understanding and accepting.

My passion will continue to guide me daily. Throw me to the wolves and I will show you how to lead the pack.

Feel free to check the social media links for our support group Autism Spirit:

Facebook page http://www.facebook.com/autismspirit
Instagram autismspirit
Twitter @autism_spirit

My Final Blog Post for 2017

Finally

I shared my thoughts earlier on introspection and how this might help you to determine some of your goals for 2018. In my final blog post for 2017, I share some of my greatest accomplishments of this year. Several of these were goals that I attempted in previous years but finally happened in 2017.

2017 accomplishments

It’s always a work in progress. Many of these goals will continue and here’s my vision board for 2018. Be sure to stay tuned for updates on these goals… and maybe some added ones as I continue to reflect on my joys, challenges and experiences in 2017.

2018 vision board

How we discovered autism

My son’s name is Joaquin, which means “God will determine”. In 2008, I discovered that I was pregnant after believing for many years that motherhood was not in my destiny. My pregnancy was perfect in every way and I was given my son as a gift and for a purpose I never imagined.

At 4 weeks, Joaquin had surgery for pyloric stenosis, an abnormality of the lower stomach muscle that caused him to reject all oral feed. At 2 years of age, he had eye surgery to correct a squint, without which, his vision would have been severely affected. I thought that was enough, but God already had a predetermined plan.

In 2013, after being refused admission by four primary level schools, concerns started going off in my head. My son spoke in full sentences at twelve months (I thought that was normal), knew the alphabet and was able to count to 20 by sixteen months. He was advanced for almost every milestone, yet primary schools were saying that he wasn’t ready. On our 11th attempt, a conversation changed our lives. “Has anyone ever suggested to you that your son may be autistic?”

I was completely floored and devastated, because I suddenly realised that what I thought were little quirks were actually signs of something more. His refusal to make eye contact, his hatred of hugs, his absolute need for routine, his fixations and the methodical way that he would line up his toys… since mama is a little OCD, I figured it to be a hereditary quirk.

In August 2013, we received his official diagnosis of Asperger’s Syndrome and Sensory Integration Disorder. To date, my son has extreme difficulty interacting with other children and tends to prefer adults instead. He has also developed high anxiety, which is common with autistic children.

My journey with autism at one point, almost felt like I was going through the stages of grief. I was shocked! I refused to believe that my child was autistic. I was angry at myself for everything that I thought I did wrong during my pregnancy. I was angry at the world and at God for making my child go through this. But as a single mother, I don’t have time to wallow. My son still needed to be in school and as much as I wanted to be a full time mama, the bills did not permit.

In search of a solution, I contacted every possible organisation, association, society, anyone who had the word autism in their name, looking for any degree of support, especially emotional. This too was minimal.

I joined every autism group that I could find online (mostly international groups), just for the opportunity to say “my son had the most epic meltdown today” without hearing “all children at that age have tantrums”, and then being forced to explain that meltdowns and tantrums are not the same.

I needed to know that there were people who understood how frustrating and polarizing my life was. I became afraid to say anything about my son because I hated to hear my fears belittled by those who didn’t understand.

I met some other incredible mamas who reached out to me in a virtual world. I was being tagged when certain questions were raised and I recognised how critical it was to have a local support group. That was how I first founded an online support group named Autism Spirit, with another fierce autism mama. A few months later, Joaquin’s former speech therapist, messaged me and suggested making this a real life group. And it became a reality.

Our goal is to empower parents to be the best advocate for their children, while educating the public. One of the most common statements that any parent of an autistic child will hear is “but he looks so normal”. There is no look to an autistic child and the nuances of autism are so diverse that if you meet one child with autism, it is unlikely that you will ever repeat that experience regardless of how many more you meet. At least 1 in 45 children is on the autism spectrum.

This is not an illness or a disease. It’s simply a different way of processing. And the only way to help is to understand. Too often, people like to offer their opinions, which can be well-intentioned but sometimes devastating to a parent who is simply doing the best that they can. I personally am immune to unsolicited opinions but not everyone has the same mettle as me.

My son is now nine years old. He is brilliant, recalls details and information beyond his age. His handwriting is atrocious but he said since he was 2 years that he wants to become a doctor, so he has that part down. He has since been diagnosed with dysgraphia to add to his list of challenges. His biggest issues are changes to his routine and his inability to interact socially. He is often overwhelmed by huge spaces and noise and his anxiety affects him daily. His fascination for the last year has been astronomy, so he wanted a telescope for his birthday and was very specific with the minimum specifications needed.

He understands that he is different, but he also knows that he has a mama who loves him unconditionally and will fight to ensure he has every opportunity he ever needs. Every day remains a challenge… some days more than others. You have to ask for a hug and he hates having his photo taken. But he will give you the last of his cookies if he sees that you are sad and make silly jokes for you to smile.

Originally written as part of The Lionesses Project by Cause An Effect http://www.causeaneffect.co

And feel free to check our Facebook page http://www.facebook.com/autismspirit

Trying to effect change and getting stuck

November 20th was Universal Children’s Day 2017 and an opportunity for those in power to applaud and celebrate all they “do” to champion the brilliance of our children. So it wasn’t particularly surprising that our local Ministry of Education posted a message specifically highlighting the ministry’s intent “to continue to adhere to the United Nations Convention on the Rights of the Child” and applauding Trinidad and Tobago as “one of the few countries in the world that offers Universal Early Childhood Care and Education, Primary and Secondary Education to all children”.

Unfortunately, that message was far from the truth. When my son was diagnosed on the autism spectrum four years ago, I was categorically told that the only schools available were for more severe cases and that my best bet would be to look for a regular school that was willing to accept him. The ministry that is supposed to provide educational resources couldn’t even find a school for my son! Now, you might be thinking “well maybe things have changed? That was four years ago.” And you’re correct. It has changed… but not for the better. There are presently no publicly funded Government schools that are fully equipped to cater for special needs children. Parents are forced to explore one of the following options:

  1. Attempt to integrate their child into the regular school system, which is often ill-trained and ill-equipped to support them: physically, developmentally or emotionally.
  2. Consider private schooling which is usually out of the financial reach of most families.
  3. Keep their children at home and possibly homeschool if there is a parent capable of delivering the curriculum.

After three years of option #1, my son’s challenges had continued to increase despite a wonderfully supportive environment. We were fortunate that the regular school we found was filled with teachers who were willing to encourage us and create a solution that our Education Ministry could not. However, the increase in challenges led us to homeschooling. I was blessed enough to be able to create a work schedule around my son. But as the co-founder of an autism parent support group, I am challenged daily by parents who do not have the luxury that I do and I am stymied to provide an answer to the same question that I asked four years ago… where do I send my child to school?

But here’s the immediate challenge that has me stuck… thinking that greater awareness is needed, especially directed towards Joe Public who might believe the hype and think that everything is fine and dandy, a petition was created. The intent of the petition was to state the actual facts and request rectification of the original message. Imagining that there would be a flood of people who would be as outraged as I was to be misguided in such a disrespectful manner. Maybe the petition hasn’t reached those people as yet? 😔 Yes, there has been support. But painstakingly slow. And that’s the moment when I have to pull back and remind myself that this isn’t personal and that it is typical human nature to resist change even when there is a benefit to it. This is the moment when I have to remind myself that even though not every fight will be won, the war most definitely will be victorious.