The extra reason why I miss my mummy

On Christmas morning my son will have a meltdown – absolutely guaranteed. It happens on Mother’s Day as well. So if I know he’s going to have a meltdown, why don’t I put things in place to prevent it? Short answer – because my mummy isn’t here anymore, which means there’s no way to put things in place. On Christmas Day, my son will wake up in anticipation of all his presents from Santa. He’ll excitedly rip open all of them, maybe start playing; and then it will dawn on him that mom didn’t get any present and he has none to give me.

Being on the autism spectrum, my son sees the world very literally. While those who don’t know better think that autistics often lack empathy, I’ve seen firsthand how my son’s high degree of empathy causes himself pain, both physical and emotional. He won’t understand that my joy comes from his happiness because he equates happiness with gifts and thinks that applies to everyone. No matter how I try to explain, he will consider himself to be the worst child ever because everyone has presents to open except for mom. My time then becomes a mix of trying to console him and trying to reassure him that mom is happy, that I didn’t need any presents on this day or any other day. These are the moments I miss my mummy the most. Without a doubt, she would’ve made sure there were presents under the tree signed from my son. Don’t get me wrong… I love the spirit of the season; I understand the true meaning of Christmas. But maybe that’s why it hurts so much because a part of my family isn’t with me. The person who would’ve supported me most as I try to navigate all the trials and tribulations of being an autism mama.

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My son’s love of Santa and Jesus

My son, being on the autism spectrum, is the most practical and analytical individual that I know. I often refer to him as “my mini Sheldon Cooper” because of his similarities to the Big Bang Theory character – his dry wit and extreme intellect. For as long as I can remember, there have been very few instances where he will take  information as given without questioning and determining the validity of what has been provided. So it shocks me that at nine years old, he still believes in Santa.

Christmas has always been my favorite time of year and my parents were brilliant in their creativity where Santa was concerned.

Me: how does Santa get in our house? We don’t have a chimney.

Them: just for Christmas Eve, we leave the door unlocked so he comes in the front door.

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Me: how does he come down the chimney? Won’t he get burnt by the fire?

Them: he lets parents know what time he’s coming so they’ll put out the fire.

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Me: what if they forget?

Them: he has magic dust that he sprinkles down the chimney which will out the fire and cool it instantly.

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Me: how can he really deliver presents to everyone in one night?

Them: well there are a few ways… because of time differences, he actually has longer than just one night. Also he really starts from the beginning of December and he asks parents to help him by accepting the presents early and keeping them hidden.

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When I eventually learnt that Santa wasn’t real, it was because my dad had lost his job a few months earlier and my parents weren’t sure that they could meet all of our expectations of Santa. Maybe my empathy allowed me to remember that Christmas differently, but to my recollection my brother and I still got everything we wanted and our Christmas wanted for nothing.

Was Christmas only about Santa and gifts in our family? Nope! Santa was an added aspect but we always understood and appreciated the day as the celebration of the birth of Jesus. To this day, “Away in a Manger” is my favorite Christmas song and if it didn’t seem weird to play it every day, I would.

When I had my son, it was important that the love and joyousness, I had always experienced would be passed down to him… first and foremost, him understanding the true meaning – to celebrate Jesus’ birthday and then to enjoy the presents, love, laughter and Santa.

There are many parents who feel that letting your children believe in Santa is un-Christian. But one of my favorite stories ever is “Yes Virginia, there is a Santa Claus” and if we deeply ponder on the words in the story, isn’t it possible that Santa  represents everything Jesus epitomizes in the spirit of the season. Knowing that the existence of love, generosity and devotion are with us and that “The most real things in the world are those that neither children nor men can see.”

My son is one of the most empathetic people I know. He struggles with his emotions but his kindness and generosity are unquestionable. His belief in Santa has always been secondary to his understanding of the true meaning of Christmas. His prayers every Christmas always include a thank you to God for all his presents and singing happy birthday to Jesus. I hope his love for all things Christmas continues for as long as it brings happiness to his life.

Christmas through the Eyes of an Autistic

Christmas in Trinidad and Tobago: that wonderful, magical time of year, filled with music, food, family, shopping, parang and merriment. But for those on the autism spectrum, this can be a time filled with anxiety and frustration simply due to the nature of the season. Here we take a look at some of the key areas of concern and how it can be made a little smoother for everyone.

At this time of year, everything is louder, bigger, more intense. The crowds in the malls are thick; parang and soca are streaming from the neighbours’ houses; the smell of ham and bread baking in your kitchen, sorrel being made next door and curry from two doors down. What does all of this mean for the child on the autism spectrum? The perfect recipe for a meltdown!

Parents, if you know your child’s particular triggers, see if there is any way they can be minimised. Would sound reducing headphones help? If there is a noisy activity that happens at a regular time, maybe you can use that time to take a drive to get ice cream. Go to the mall at 10AM instead of 3PM. Sometimes talking to your child and letting them know that these activities are a possibility can help in preparing them and it may give them the opportunity to express their feelings. None of these are fool proof. But it’s important to try and see what happens. And be prepared that what worked last year Christmas may not work this year. Know that as much as kiddo loves going by Grandma on any other day of the year, it may be akin to world war 3 when you go at Christmas time. Friends and family, if you know one of your guests is on the spectrum, perhaps you can clear a room specifically for their use. Very often, children can regroup and recharge if they know they have a quiet, dimmed safe zone that they can escape to.

Another matter is food. Autistic children often have major food aversions and their diet can be very repetitive and rigid. I always make sure that my son eats before we leave home and I usually have snacks with me in case the fare provided is not to his standards. Please don’t take this personally when he says he’s not hungry. Firstly, that’s his polite way of saying that he will not eat your food under any circumstances. Secondly, as his parent, I don’t want to put you through any more trouble than necessary. However, if the next time you invite us, you would like to make sure and prepare something specifically for him, understand that your ego cannot be invested in what you have made. We will need for you to prepare exactly what we tell you, exactly as we tell you. Their senses are often so heightened that white rice instead of the basmati rice we advised can trigger a meltdown.

Who doesn’t love presents, especially at Christmas time? Before we go shopping, let’s think about this through the eyes of an autistic. Rigidity and repetition govern their behaviour which means they may fixate on a particular character or activity for years. For over four years, my son was utterly obsessed with Lightning McQueen. Now you might think “all 5 year old boys like toy trucks” and you’ve visited our home and seen that he has every possible item of Lightning McQueen already. But that’s not the point. He would have appreciated a $10 pack of Lightning McQueen stickers more than the $1000 truck you splurged on and for that moment, he would be happy. And isn’t that the point of getting presents. Forget about your preconceived notions. Ask what kiddo wants and get that! Even if it means an Elsa doll for an 18 year old girl or My Little Pony for a 5 year old boy.

As with any other time of year, routine is critical. Try to maintain that as much as possible. Parents, don’t stress about the season. If you need to treat this day as any other, then do so. Friends and family, be understanding and don’t take any action as a personal affront. You’re seeing a glimpse into what we live with every day but in overdrive because of the heightened emotional time of Christmas.

Originally written for Care Parenting for publication in the Trinidad Guardian

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

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.

Why do we need one more blog?

Most of my best ideas tend to happen around 2am. This one happened at midnight, but the same general concept. I can’t sleep so my mind goes into overdrive. Or maybe my mind is in overdrive, so I can’t sleep… the never-ending cycle of insomnia. But when the idea of a blog popped into my head, I didn’t automatically get excited. It felt like it could be a good idea. But I also thought about being tired and trying to commit to one more thing. I ran through everything else that consumes so much of my life and thought “how do I fit one more thing in?” But it was those thoughts that actually made me realise why this made sense.

My life is a constant juggle. Do I wish it was sometimes simpler? Yes, but then I don’t think my type A, Virgo, over-drive personality would accept it. I’ve always been most successful when I have multiple tasks as opposed to just one or two. And I’ve always liked writing… it’s the easiest way for me to get my thoughts out without sounding like a muddled mess. Annnndddd, because I have so much stuff going on in my life, I have a lot of things to write about. So ultimately, that’s why I think we need one more blog… because I have a lot of stuff to say – some incredibly important, some of it light and trivial. But hopefully, stuff that you can connect with on some level. I’m a mama to a 9-year-old high functioning autistic son, a yoga instructor who found my calling after 16 years of corporate life, an autism advocate running a parent support group, an incredibly impatient homeschooling mom, a concerned environmentalist, a science nerd and dweeby bookworm, a recently converted vegan, a Trini / British with a passion for the beach and life… and there are lots more I haven’t mentioned yet.

I hope you’ll stay tuned, share with your friends, leave me comments and most importantly, enjoy!