“Mummy, I Don’t Want To Be Alive”

In April of 2015, Joaquin had the worst meltdown of his life: the meltdown that devastated me for weeks and made me question every ability in me as his mother. A series of events led up to the breakdown and throughout each one, I kept thinking that he was doing so well. In retrospect, I should’ve known this was a recipe for disaster in progress.

#1 – He had no school the day before… schedule out of whack.

#2 – We couldn’t find his iPad that morning… but he’s still good.

#3 – We couldn’t find his dark blue track pants that he always wears on Saturday mornings.

#4 – The big one, eye doctor visit… invasion of personal space and being poked and prodded.

All of these are not things that my boy takes very well without ample preparation and even then, I can usually only hope for the best. So what was the trigger? In order to keep him calm, I promised him at the ophthalmologist that he could use my phone after to play games. We got into the car and while we are driving, he asked for my phone. I then decided to change the arrangement and told him that we should do spelling first. All hell broke loose… screaming, shouting, he tried punching me while I was driving.

To a parent, who is unaccustomed by this behavior, the first thought is that this is a lack of discipline. But for a child who has extremely established routines, who needs forewarning before the plans change, who needs to go through all possible outcomes, so he can determine how he will address every possibility… this is not unexpected. If I had given him the phone and said “you have it for 1 minute and then we do spelling”, he would have been fine.

But instead, I changed the agreement completely and his brain isn’t always able to process that in the best way. So aside from attempting to physically hurt me, he will also hurt himself because he cannot verbally communicate his heightened emotions. On this occasion, he tried to open the car door while we were moving. I was able to pull over and after about 30 minutes, of him screaming and crying and me doing nothing more than bear hugging him, while trying to calm him, he said “mummy, I don’t want to be alive”.

My heart broke completely. I had no words. All I could do at that moment was hug him and allow the tears to flow from us both. I felt emotionally and physically ill for weeks after. I questioned the need for spelling, my need for discipline. Why didn’t I just give him the phone? I believed at that time that I was the worst mummy ever… that a good mummy would’ve been able to fix his hurt instantly. Or better yet, would not have caused his hurt in the first place.

But as with all challenges, there comes a time when we have no choice but to dust ourselves off, pick up the pieces and continue to fight. I know that I’m not perfect. I also know that I’m the best mummy my son has and I will do any and everything to help and support him. This is simply one more challenge to overcome.

If you’ve ever experienced anything like this, know that you are not alone. Know that there is at least one mummy who feels all the emotions you’re going through. Know that this will get better.

FB_IMG_1513790951059

Advertisements

I didn’t know any better

My son’s name is Joaquin, his name meaning “God will determine”. For many years, I believed that motherhood was not in the cards but in 2008, I happily discovered that I was pregnant. 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, at 5 years of age, he was refused admission to several primary level schools. The explanations were vague and I was completely stunned. These schools were saying he wasn’t ready. But this was 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. What exactly did they expect from him?

On our 11th attempt at a primary school, a single question changed our lives. “Has anyone ever suggested to you that your son may be autistic?”

I was devastated. I considered myself to be reasonably educated, but I knew nothing about autism. I ignorantly thought that anyone with autism was below average intelligence and unable to speak. So why was someone now suggesting that he was autistic? What were they seeing that I was missing?

And slowly the signs emerged. The little things that I thought were quirks were the glaring signs that had been right in front of me. But I simply didn’t know any better.

  1. Joaquin very rarely made eye contact. But I thought this was as a result of his eye surgery.
  2. He always hated people in his personal space. Hugs were always a very rare occurence and often reserved for the most loved people in his life.
  3. His need for routine… when he woke up on a morning, he would take 15 minutes to watch cartoons, then he would use the washroom and brush his teeth. He had 2 toothbrushes: a spiderman toothbrush and an ironman toothbrush, and they had to be alternated every day. Then breakfast and dressing for school. Whenever something happened to disrupt the pattern, his behaviour would descend into madness. The worst crying and screaming! I thought he was being rebellious. It never occurred to me that it was something more.
  4. Three straight years of hearing about nothing other than Lightning Mc Queen. Gift buying was easy so I never questioned anything.
  5. Toy cars in line… and don’t you dare take one out of sequence! Refer to the latter portion of point #3 – crying and screaming!

For over a year, I blamed myself. Obviously if I was a better mother, I would’ve known. But the reality was that I didn’t know any better. I didn’t know a single autistic person and at that point, I don’t think I had even interacted with one.

FB_IMG_1513790795966

To the mom or dad reading this and you’ve just gotten your little one’s diagnosis, and you’re wondering as I did if you’re at fault. The answer is NO! If you’re confused and overwhelmed by the deluge of information out there, know that this is not an illness or a disease. It’s simply a different way of processing. And in time, things will start to make more sense. Know that there will be good days, and not so good days, but there is a community of us who understand and will always support you and encourage you.

The Myth of Autism and Vaccines

Several weeks ago, I was sent a link for a “business” offering stem cells for autism, purportedly to reduce stimming, end meltdowns, reduce aggression and improve clarity of mind and speech. Their website defined autism as a devastating disease linked to vaccine injury and heavy metals. A highlighted video titled “How adult stem cells can help autism” showed numerous reviews from parents applauding the “success” of the treatment. In the midst of the technicalities and in fine print was this statement “We are not suggesting that adult stem cell therapy is a cure for autism, nor can we promise or guarantee results.”

That seems contradictory! However, as a parent seeing the most extreme manifestations of autism in your child, you will grasp at any straw that offered hope and you might want to believe the headline and ignore the details, which I did four years ago when my son was diagnosed. At this time, there was extensive hype created by Jenny Mc Carthy who claimed vaccines caused her son’s autism and supported by her then boyfriend, Jim Carrey.

In retrospect, taking medical advice from Jenny probably wasn’t on my top ten list of smartest decisions but I was desperate. I didn’t understand autism or where to get information and together they sold a convincing story. Fortunately, I’m one of the most cynical and suspicious people you will ever meet. While I initially felt there was some degree of truth to the “autism / vaccine” link, I started reading more and was baffled. How could I Google and get such opposing views all from seemingly reputable sources? Which side of the story was true? Instead of continuing to research “do vaccines cause autism?”, I decided to change my approach and started looking into where and when was the autism / vaccine link discovered?

The change in perspective altered findings dramatically. Here’s what I found… in 1998, The Lancet, a reputable and established peer-reviewed medical journal, published research by a doctor named Andrew Wakefield supporting a link between the MMR vaccine and the appearance of autism. Questions started being raised when other researchers were unable to reproduce the findings or prove the original hypothesis. In 2004, an investigation identified financial conflicts of interest with the original research, as well as skewed and exaggerated results to support the hypothesis. It was also discovered that Wakefield did not have required ethical approval for the testing he conducted. By 2010, further investigations proved that Wakefield was dishonest and irresponsible in his research. He lost his medical license for deliberate falsification and The Lancet issued a retraction.

a4030d64-e4cd-4d45-a388-f4ede7f69fb0.jpeg

The damage was done and an anti-vaccination movement was created. Parents were deliberately deciding to not vaccinate for diseases that were almost completely eradicated. A huge part of this movement is the argument that if other children are immunised, non-vaccinated children would be safe. To understand why this is a very dangerous viewpoint, you need to understand the concept of herd immunity. There are people who CANNOT be vaccinated – because they are too young, or ill, or have a compromised immune system where vaccinations could be a risk. Herd immunity aims to protect those individuals but is dependent on the vaccinated population being as large as possible. When the vaccinated population starts to wane, as happening nowadays, herd immunity decreases.

696FFBCC-BED7-4C76-8330-C825D90CEE68

Before the measles vaccination program in the United States in the mid-1960s, there were 3-4 million cases each year, with approximately 450 annual deaths, 48,000 hospitalizations, 7000 cases of seizures and 1000 cases of permanent brain damage or deafness. In 2000, the US was declared free of measles with only 911 cases in the following 10 years. However, between 2014 and 2015, there were two major outbreaks and 542 cases were reported, 90% of those in unvaccinated individuals. Worldwide, no other vaccine-preventable disease causes as many deaths despite the proven fact that life-threatening adverse reactions occur in less than one per million vaccinations.

Look out for a continuation of this blog post very soon where I’ll discuss my views on how the anti-vax movement has affected resources for autism and the impact on families.

This is the original version of the article written for Care Parenting for publication in the Trinidad Guardian

And 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

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.