Why I Hate April

April is Autism Awareness month. Last year I remembered an intense sense of dread and depression about two weeks in and I found it necessary to remove myself from the usual social media channels that I would frequent. I anticipate this year will be no different. Allow me to explain…

The ongoing battle as to what color, hashtag and symbol should reign supreme

When my son was first diagnosed, almost five years ago, one of the first organizations that I came across was Autism Speaks. It took almost a year before I learnt how vilified this organization was by the vast majority of the autism community. To my understanding, the color blue and the puzzle piece symbol were largely instituted by Autism Speaks and remain irrevocably linked to this organization. A full explanation of all the controversies with Autism Speaks would require its own separate blog post. But it can be simply stated that if you use the color blue, the hashtag #lightitupblue or the puzzle piece to indicate your support for autistics, you will be categorized as a supporter of the organization.

This places me in an awkward position. My son’s favorite color is blue and he connects with the explanation of the puzzle piece. As he gets older, his views may change and if they do, my support of him as an autistic will also change. In the meantime, I’m stuck between a rock and a hard place. I’m expected to support autistics by using #redinstead and the infinity symbol. But not support my son who is autistic and the reason behind all of my efforts and advocacy since it is automatically assumed that if I use the color blue I’m supporting Autism Speaks, which could not be further from the truth.

Awareness vs Acceptance

Another recurring sore point is the argument of which is more important… awareness or acceptance? People are encouraged to support #AutismAcceptance and constantly told that #AutismAwareness isn’t enough and to eschew awareness. The comments on social media are often brutal.

But here’s my thought process… when my son was diagnosed, he was the first official autistic person I knew and that extended also to most members of our family. I was then tasked with having to explain exactly what autism is and there are several members of my very large extended family who have limited education. I had to break this down to bare basics. How can I press for acceptance to individuals who have no understanding of the situation? It quite simply doesn’t make sense. So as much as awareness has grown, I believe it is still a crucial aspect towards achieving acceptance.

Autism awareness month is every month

Look out in April for the multitude of posts proclaiming “every day is autism awareness day in my house” and “autism awareness month is also January, February, March, May, etc”. Here’s the thing… my son is autistic and yes, we live with autism every single day. But the average person doesn’t. And while I want that person to figuratively walk in my shoes or my son’s and understand the challenges we face and how they might be able to support better, I want them to live the life that they have been dealt. That means every day will not be autism awareness day in their household and every month will not be autism awareness month either. By having a specific time, conversations are created with those who are outside the community and I believe that is the major route towards acceptance.

Person-first vs identity-first

This argument tends to intensify during April. Let’s explain first… person-first language is where the person comes before the condition e.g. my son with autism. Identity-first language places the condition e.g. my autistic son.

Going back to when we first received the diagnosis, we were encouraged to use person-first language. The essence of this approach is that we recognize the individual most importantly and I value that viewpoint. Truthfully though, I always found that it seemed very wordy and not particularly fluent. However, this wasn’t about me so I continued.

The turning point happened about a year later when my son described himself as autistic. We sat down and spoke about the two different ways of describing autism and I asked him which he preferred. His response was what guided me to switch to identity-first. Aside from him also thinking that person-first language was superfluous and wordy, he said to me “won’t I always be autistic? Isn’t this a part of me for life?” And he’s right. There are many more aspects to his life and personality but autism shapes a lot of them. We choose to celebrate autism so why not allow it to be forefront in who he is.

Here’s my issue… when individuals are berated and belittled for their choice of language. If someone uses person-first, they shouldn’t be criticized for that unless it is clear that their decision to do so is from a malicious intent. The larger autistic community prefers identity-first, but there are some who don’t. And that should be respected without needing justification.

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I hope this April will be different… a month when we can show greater respect and tolerance for all of the different ways that autism is represented. And if not 2018, maybe the following year.

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“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.

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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.

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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.

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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.

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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

New Year’s Resolutions for Special Needs Parents

If you’re like most parents, it can be challenging under ideal circumstances to make self-care a priority. Add a special needs child to the family and that goal of self-care feels almost impossible. But in order for us to be the best parents and advocates for our children, it’s critical that we find balance to our lives. And what better time to focus on creating those goals, than the New Year.

So here are my thoughts on some possible resolutions that you can consider for you and your family.

Take a moment for yourself

In theory, it makes sense. If you’re stressed, you can’t give your best. In reality, how do you find a quiet moment with your spouse or by yourself when the care for your child is so delicate? Taking those moments to relax don’t necessarily have to be away from the kids (although it’s a little nicer). Perhaps movie night at home; a game of twister; anything to bring a smile to everyone’s face. And don’t underestimate willing grandparents. Maybe they don’t do everything as you do. But will your little one be safe and enjoy himself? That’s most important and you get a few hours to recharge.

Celebrate the smallest of victories

It’s sometimes overwhelming when we consider the simple things that our children can’t do. When your child is 6 years old, they aren’t fully verbal, still potty training and only eat mac and cheese, it can become very disheartening. Firstly, give yourself permission to have those feelings. You are human and entitled to have a despondent moment occasionally. But then start to work on changing your perspective. While you’re setting goals to work on the challenging areas and know that progress will happen eventually, start to rejoice the little things that our children CAN do. To this day, I’m delighted every time my son gives someone a hug because he hates people in his space. If he tries a new food, I’m ecstatic. And my entire social network will hear about it!

Find a strong network to provide emotional and informational support

Ideally, real life support is excellent. But don’t underrate the power of Facebook groups and online forums. Our support group Autism Spirit was created for this exact reason… so that parents could find people willing to listen to them vent and support them.

One day at a time

This was a difficult lesson for me. OCD Virgo with a Type A personality usually means planning the next 10 years of your life. But this was a real resolution that I set a few years ago. I knew that I needed to change my outlook and that meant taking away my compulsiveness to plan and generate results. It was a huge challenge but by reminding myself daily to take each day as its own individual and special allotment of time, it allowed me the opportunity to appreciate the results as they unfolded, instead of on the timeline I would’ve planned.

Become the best advocate that you can be for your child

There are many challenges to raising a special needs child worldwide, not just locally. Greater awareness and acceptance is needed in schools, hospitals, business places so that inclusion and better resources can be made available. Who knows your child better than you? And who can speak on their behalf better than you? Not everyone can speak publicly. But find support groups and organisations that align with the vision you want for your child and find out how you can lend your talents to creating a unified stand for special needs.

Originally 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: