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We live in a country where academic achievement is worshiped and where A’s are synonym of intelligence. One of the first questions a stranger asks another person is: “what school your son/daughter goes to?” in an effort to get to know what kind of child the person has and what kind of parent they are.

If the child in question happens to pass for a “prestigious” school, it means they are extremely smart and the parents are doing an incredible job. But if the child does not pass for a school of his/her choice, it is almost like there is shame on that…For the child and for the parent.

Parents of neuro-typical children of all ages love to talk to other parents how great their kids are doing. Whether they are studying at a University, got an amazing job or they just graduated with honors, parents are proud of their children’s accomplishments. It is only natural. Sometimes it goes a little too far though, when it becomes a competition with other parents rather than just being proud of their children’s success.

In other words, it ends up being about the other parents rather than their own child. A race that decides who is the best child and who has the best parents.

The greatest thing about all of us, parents of children with special needs, is that even though we are extremely happy with our children’s achievements (And we love sharing their accomplishments with other parents!) our world moves in a much slower pace than the neuro-typical world.

We never sign-up for races, but we sign up for journeys. But watch out, just like in the story of the Hare and the Tortoise, the fastest isn’t always the winner.

What about the ability of being you and not worrying about what other parents might think? You never feel inadequate or embarrassed next to another special needs parent. If your child has a sensory meltdown, the other parent understands. If your child is having a hard time eating or communicating, the other parent knows what is like.

And even though each one of our situations is unique, we all know special needs parenting isn’t a walk in the park. So the feeling of empathy comes from first-hand understanding.

So if you are caught in the sticky web of comparison, in the web of “what others will think if…” or maybe someone is making you feel small, inadequate for having a special needs child please take a deep breath and tell these positive affirmations to yourself daily:

I AM DOING AN AMAZING JOB WITH MY CHILD.

HE/SHE WILL SUCCEED.

I AM A GOOD PARENT DOING THE BEST I CAN.

Our world might not be considered as sparkly by others but WE create the world we live in; WE create the atmosphere our children live in.

Never, ever feel inadequate or that you are not good enough. You are more than enough. More than worthy and more than capable!

There will never be a need to compare our child or parent to any other special needs child/parent. Why? Because we are all in this together! We know what is like; we know the hard work it involves. Your success becomes my success. What your child accomplished today, my child might accomplish tomorrow.

Our sharing is never selfish or self-conceited; our sharing is about giving HOPE to another special needs parent.

Let me tell you, our world IS moving, slower but MOVING. We just need to pay closer attention *wink*.

Last Thursday, was my middle son’s 11th birthday. As the date was approaching, a lot of thoughts were running through my mind about him. Time has surely flied. Just yesterday, he was a gorgeous little baby with light brown hair in my arms and now, a super handsome boy on the verge to become a young man.

I already started noticing the physical changes in his body. I realized that he is also noticing them and he isn’t very sure how to react to them. If you have a neuro-typical or high-functioning child that is about to enter puberty, you can probably sit down and explain what puberty is all about and let them know in advance the changes they will experience, etc. So they can be ready. But what about those children who are on the other side of the Autism spectrum?

This is the case of my middle son. He is always on my mind. When I am up, when I am asleep, when I cannot sleep, in my dreams… he is always there. As his mom, I deeply worry about him because unlike his brothers, he is the one who is still struggling to communicate verbally. His innocence and unawareness about the real dangers in this world makes him extremely vulnerable. What will happen to him when we are no longer here? This is the question that takes away my sleep at night, or when I have nightmares where someone dares to hurt him and I am not there to protect him.

But despite all the challenges my boy faces every day, he is always eager to learn. His beautiful smile is so captivating that melts my heart. He sees beauty and happiness in everything he sees. He has taught me the meaning of contentment by teaching me to be happy about the simple things in life.

He has made remarkable progress throughout the years and I couldn’t be more proud. I love him so very much, to the entire universe and back.

AN AMAZING SURPRISE

On his birthday, something truly terrific happened. For most people with neuro-typical children, it is just an ordinary event but for parents of special needs children it is a big accomplishment that shouldn’t go unnoticed.

He went out for the first time to a real restaurant and guess what? He did so great, so very great. He sat down patiently while the waiter took our order. Then continued waiting until his meal arrived. When the food reached, he took his fork and knife very carefully and ate all his food so perfectly, like the true little gentleman he is. He was not overwhelmed or stressed. He was very happy. The people, the lights and noise didn’t bother him in the least. He wasn’t in a rush to leave and he didn’t have any meltdowns. It has been a while since he had one.

Most people do not know, but these accomplishments did not happen overnight. They took eleven years of hard work and constant dedication to reach this very moment.

HOW ALL STARTED

Things haven’t been easy. When he was younger we had to hold him very tight so he didn’t hurt himself or others. He would have huge meltdowns if his routine changed. Back then, he didn’t know the meaning of days and months so he was constantly anxious and stressed about what will happen the next day. It took a whole year and more to just teach him the meaning of time.

He didn’t know how to self-regulate, so he went through some serious and constant meltdowns at home and in the middle of the grocery store or anywhere we went. He would cry non-stop, kick, bite, or shout if he saw a fly buzzing around or something changed. I can only describe those years as very stressful but that is only an understatement.

However, it didn’t stop us. We knew that if he had to live in a neuro-typical setting we needed to expose him to those same exact situations over and over again. As he got used to these activities, the meltdowns decreased significantly. Also, just like his older brother, he couldn’t sleep well at night so we went through sleepless nights for many, many years.

One day, when we had no choice but to take a taxi back home he became so upset at the unexpected change that he had this huge meltdown inside the taxi. It was one of the worse meltdowns I have ever seen. It was what we call “The Hulk moment”. This also triggered our youngest to have a meltdown. I was extremely concerned when I saw him opening the car door while in movement. Other drivers passing by were watching us, wondering what was happening. I think they thought we were kidnapping them. Little did they know that these were the things we were going through almost every day.

He was also extremely rigid on his daily routine (Any interruption would lead to a huge meltdown) and needed a visual schedule of all the activities and meals for the entire week. He no longer needs it. As he started maturing, we worked very hard at his adaptability factor and we changed his schedule many times (On purpose) to work on his flexibility. It wasn’t easy at first but again, exposure has been key. Nowadays, we just tell him what activity will take place the next day and he is okay with that. If there is any change, he is able to manage it well and cope in a positive manner. It took many years to accomplish this.

When I looked at him in awe in that restaurant, I thought to myself “Autism, take that!”

HIS ACCOMPLISHMENTS

He can use the computer better than I do, he is learning how to do multiplication and can easily add and subtract with his mind. His sense of direction is also incredible (I am directionally challenged so I am so grateful I have him around to guide me when we travel)! He has taught me that communication is way more than words and sometimes, things just take a little (Or a very long) time to achieve and its perfectly okay. There isn’t a bus to catch or a race to finish. It is just him enjoying the journey and learning at his own speed.

Even though, I will always worry about him and his brothers my heart melts with joy in situations when I see how much progress he has made. Just like the rest of parents with wonderful children like him, there is so much work behind the scenes and years invested in accomplishing ONE little task that most people take for granted – I know exactly what it is like, however changes seldom happen overnight, so when that accomplishment becomes tangible like it happened at that restaurant with my son; it becomes a true moment in time to be remembered.

LET CHILDREN EVOLVE

The thing I have discovered about Autism and my sons is that with time they evolve but always, at their own time and speed. Patience is key and sometimes it takes long years.

I believe it is extremely important to not ever limit them or judge their potential/ability based on their diagnosis or opinion of others. Our children were born to SHINE and EXCEL no matter who tells you otherwise. Believe it, and your child will feel it. Believe it, work hard and you will see the changes happening over time.

No matter how small those changes might be or how long it takes, be happy. Your child is trying his/her very best and should be praised and acknowledged at all times. Treat accomplishments as accomplishments rather than label them as small or big. What we see as small may be huge in the world of Autism. Be the positive change you want to see in your child. Remember, as parents we are our little ones number one fans.

OUR ATTITUDE DETERMINES OUR ALTITUDE

We all know it isn’t easy. Even though I know we are all exhausted, stressed and many times discouraged I also know we CAN do it. Do not ever think that the great milestones I am writing right about now might never happen to your child. Start by thinking POSITIVELY and POSITIVITY will follow.

Autism wants to take my children back to its own world on a daily basis; it is a constant battle between Autism and me. But let me tell you…this blooded-Italian descendant, don’t ever go down with a fight. I was born a soldier and I have fought into this battle for way too long to ever give up. There isn’t time to feel sorry for myself or my children. It is time to continue working hard and pushing until another accomplishment like the one last Thursday takes place.

If Autism was a football player, he would probably be Cristiano Ronaldo but guess who I am? Lionel Messi *wink* And I don’t have to tell you who WILL win this match.

It is almost April and around this time, I am usually approached by organizations, companies or individuals who seek my support and/or interest about activities they are planning to carry out during Autism Awareness Month. I would like to take this opportunity to share my thoughts about these prospective events in order that autism parents, those who do not have children on the spectrum and people that are involved in the planning and execution of these activities can understand what is truly needed to help those on the autism spectrum and their parents. This comes from the mouth of a parent-soldier who fights daily battles from the hidden trenches as most autism parents do.

First, I would like the focus of this blog post to be a question. A question I would love for someone to ask me every time I am contacted about an event, a question that I believe to be vital as well as monumentally important in order to create change and truly help families affected by autism locally. The question:

What do parents and children on the autism spectrum need in T&T?

I am aware that as an autism parent, my needs might be different to another parent with a child on the spectrum. As the President of the Autism Parents Association of Trinidad & Tobago (APATT), my advocacy does not end with my own children. It extends to all children with autism living in this country. As special needs parents, it is only natural to keep focus on our own children; after all we have enough on our plate. Yet, I would like you to know that I am in touch with parents on a regular basis who are struggling terribly and they have serious needs and they have no one to turn to.

It is very hard to hear men cry over the phone because they are overwhelmed about the challenges associated with autism or hear a mother tell you they have no money to afford therapy for a child who beats her almost daily or an older parent asking you what can they do for the child to stop banging his head on the wall.

Imagine finding out about a 30+ year old son on the spectrum who never received schooling or therapy. What about having a mother tell you she has no choice but to take her two children with autism to work every day as a vendor to make ends meet because there are no schools for them. A lot of these parents are single with no family support whatsoever. Some of them cannot even afford basic groceries.

This is the reality of a LOT of autism parents in our country. When I blog, when I advocate, when I speak up it is with THEM in mind. I would like you to keep them in yours as well as I explain to you my position about these events and I share with you what can be done if you are interested in helping autism families.

As you know, I believe that in order to make true change that can help the entire autism community in our country; we need government involvement in the form of public therapy available for our children and schools catering for their needs.

We have pushed and will continue to push for this since we believe it to be the solution. I am quite aware that this type of change will require direct intervention by those in authority who are capable of making public special needs education and therapy available with the stroke of a pen – an agreement in cabinet – a caring heart. So what happens in the mean time? What can we do to help parents as the ones described above?

I will give my full support to any venture that FOCUSES on what can be done to HELP parents and children on the spectrum DIRECTLY. I will give my full support to any event/activity that provides totally FREE services for autism parents and their children because what parents truly need in very colloquial terms, is “A break”. Some respite for an autism parent is an oasis in the middle of the desert. Someone who can be their superhero for a day and makes things better even if temporally.

As Autism Awareness Month approaches, I have some practical examples about activities that could directly help/benefit individuals on the spectrum and their families:

1. If you wish to have a display of services available for individuals with autism (Like an Autism Fair), instead of commercializing the activity by promoting businesses or make it look like a PR event, get in touch with therapists willing to donate their services for FREE and give out a few vouchers for free therapy sessions for children on the spectrum.

2. If you wish to do something fun for the children and/or the parents, you can sponsor FREE restaurant outings and movies. For a great number of homebound parents, this is a luxury. They could well benefit from a stress reliever.

3. If you are organizing a workshop that could benefit autism parents, please ensure it is FREE so needy parents can benefit. The reality is that the big majority of autism parents locally are financially broke and a lot of them are also single parents. They struggle financially to the point of taking bank loans in order to afford private therapy and private schooling for their children.

4. If you are planning an activity that requires the lighting up of trees and big buildings, why not use that money that is about to be wasted on lights and organize groceries and hampers for a few needy autism families in desperate need of help? In this way, you immediately impact their world in a meaningful practical way.

5. Organize FREE outings for children/teens and adults with autism. Please do not charge for this service, it is already hard enough for teens and adults who are aware of their struggles to make it to the group, let alone know their parents will have to pay to access it. Remember, this could be one of the few opportunities that many individuals on the spectrum will have to socialize with others.

6. Ask special needs teachers to volunteer a few FREE teaching sessions that could benefit children with autism who do not go to school. A lot of special needs teachers working in the educational system, are not given the opportunity to teach children with special needs, this could be a great opportunity for them as well.

One of the drums beaten during Autism Awareness month is “Awareness”. The ones who need to be aware is the government, and in many regards they are aware but they feel that NGOs like APATT help solve the issue of autism in T&T but it does not. Awareness for most of the citizenry is not knowing the stories I shared earlier but PR events surrounding tents, balloons and lights. Autism is not a brand and our children are not the poster boys/girls. Commercializing autism, branding autism, does not pay for therapy or create schools for our children. It actually desensitizes autism.

The key word for all the activities I mentioned is FREE. Not because I believe in a “give me-give me” approach to things but because I believe this is what a lot of parents truly need. If we want to approach Autism Awareness Month by making an impact on the lives of autism families then why not take a practical approach?

Autism parents and those on the spectrum do not need your pity, they need to know that someone like YOU will give from your heart to help.

Consider the six points above, do it, and you will be touching the life of an autism parent or child / adult on the spectrum that needs to feel someone does care.

Let me start by saying that we seem to approach major issues in T&T with a “bandage-like approach”. What do I mean by that? Instead of searching for the root issue of a particular problem, we go around in circles placing bandages and temporal fixes to try to alleviate a particular issue without making any serious attempt to solve it and in this way, stop once and for all the constant need of “fixing”. This is what I seek: A proper solution.

The recent news about the possible closure of fourteen private special schools in our country that are funded by the government, seem to have raised many questions from members of the public who are not familiar with the pledge of special needs children, their needs or resources available to them.

There is a perception that children with autism particularly, have schools they can go to and can be easily accessible. I have been trying very hard to fight this wrongful perception by providing facts on national television, newspapers and radio. Imagine the shock, the surprise of many members of the public upon discovering the reality.

There is a constant outcry of why “X” school or “X” organisation did not receive any funding or is not receiving any funding, but the question is how does it meet the needs of ALL special needs children nationwide and not a selected few? As president of APATT I speak to parents regularly, and let me tell you the reality is beyond brutal. There are countless children with special needs in T&T who are unable to access any educational opportunities (Let alone, therapy) and because most of their parents are home-bound, they are invisible to the system.

I have three children on the spectrum but I do not think about the needs of them only but of ALL children with special needs in our country. It is very hard to hear a grown-up man crying over the phone because his child is unable to go to school due to horrible experiences, it is very hard to hear a broken voice of a single parent who is trying to make ends meet and does not know what schools are out there that can meet the needs of her child.

It is extremely hard to listen the details of physical abuse towards a teen with autism by the hand of those who are supposed to know better. It is frustrating to contact authorities to deal with some of these issues and see that the whole system simply does not care and keeps failing them over and over and over again and there is no accountability whatsoever. I hope I gave you just a little glimpse of why my goal is help for ALL children and not just a few.

As I have stated many times in the past, the responsibility of fulfilling basic rights of all citizens lies in government. This isn’t my opinion, and I certainly do not believe in a “give-me give-me” mentality. I am clearly stating what the UN Convention on the Rights of the Child Article 23 and the UN Convention of persons with disabilities Article 7 clearly say as to who are responsible for the educational needs of the population.

UN Convention on the Rights of the Child

UN Convention of Persons with Disabilities

Private special needs schools are funded partially by the government, they also charge parents school fees for the services they provide, they do fundraising and some receive donations from organizations or from good Samaritans. Funding through the government seems to be a slow and lengthy process. How different things would be if the government establishes public special needs schools that can cater for ALL children in our country and mainstream those who are able to cope?

How different it would be if the system used is the same as regular public schools. Funding will be available and qualified teachers would be paid directly from the Ministry of Education as they do in regular schools, salaries will never be an issue. Most importantly, ALL children nationwide could benefit. When will the government see the bigger picture?

Now before you tell me but Maria, I agree with you but all of those things take time. Yes, I understand. I have shared some ideas with those in government as to what can be done at the mean time until a proper system is put in place. However, the issue here seems to be a willingness to approach this with the urgency that it deserves and that’s why… here I am, once again blogging about this for the millionth time.

I have a dream…proper public schools for ALL children with special needs in T&T. A proper system in place, all those tears wiped away…only smiles knowing your child is going to school without you having to worry about where you will get the money to pay for school fees… going to work happy knowing your child is properly taken care of and being taught… I cannot believe I am asking for these things in 2017… I hope it is clear now why the government is the only body who can make it happen because they are the only ones with the necessary resources/funding to make it happen. Like the song “Imagine” by John Lennon says …

“You may say I’m a dreamer.” Perhaps.

But I am not the only one.

When people find out I have three children with autism (After the initial shock!) the question that follows is: “How do you do it?” So I thought in creating a blog post especially for all the autism parents out there who I am in contact with on a regular basis and ask me this question in order to get some tips. So here it goes:

1. I am Vegan: Being vegan helps me tremendously to cope with the challenges associated with autism. I ensure to eat properly every day and do not skip meals, when time is tight I ensure to have a banana, apple or granola bar always handy.

When you are hungry, your mood changes and your frustration level goes up. Because the foods I consume are quite healthy, I hardly ever get sick and I have endless energy!

Let’s face it; you cannot afford to get ill when you have a child to take care of during the day who needs all your attention and energy, let alone three on the spectrum! So changing the way I see food and taking care of my health has been an amazing journey with spectacular results. If you want to read more about my vegan journey please check my Trini Vegan Blog.

2. I force myself to have a “Me” time: When the boys go to bed, I ensure to have a “me” time even if it is just 10 minutes daily. It is so easy to get “lost” in taking care of your children when ignoring your own needs.

My “me” time includes watching a movie or videos that make me laugh, learning a new recipe, doing my nails or trying a new hairdo. As an autism parent, we shouldn’t forget about ourselves.

If you feel selfish spending any time doing something you like, let me tell you that you are already doing a tremendous job with your child and you should try (As much as possible) to do something that helps you release stress and recharge, not only for you but for your child.

If you are happier and well-rested, you will be able to help your child more efficiently and with a good, positive attitude.

3. I sing and listen to music: Singing has such a powerful effect on stress. Singing releases endorphins also known as “happy hormones”, it is not surprising that as soon as you start singing you start feeling better! You do not have to be a professional singer or know how to sing in order to do it.

When I feel overwhelmed, I start singing the first song that comes to my mind and helps me to remain calm and collect myself. I also listen to a lot of music, usually Opera which is my favorite or any other type of music I might like.

It is an amazing and useful tool if you are feeling too grumpy and you are about to bite someone! It helps a lot with mood swings. After all, they say music soothes the beast within each one of us. 😉

4. I have other interests besides Autism: Sometimes you have to let autism unattended (Mentally at least) for a little bit (I know, it seems impossible…we all know that most of the time it does not work that way).

However, even though, indeed my entire life revolves around coping with the challenges associated with raising three children on the spectrum I also have other interests that help me as a person and that remind me that besides the fact that I am an autism parent, I am first and foremost an individual.

I love blogging, cooking, exercising, reading and debating and it is something I try to do as much as I am able to.

5. I do not compare my children with others: I try my best to provide an atmosphere where my children feel they can progress at their own pace without being compared to other children.

Their achievement (even the tiniest) will be acknowledged and celebrated. This creates a flexible ambiance that makes them want to learn more, as a parent it makes things a little more manageable. Of course, like everything with autism, it doesn’t work like that all the time and at all times.

However, one element we should always keep in mind is that ALL children with autism can learn and they ALL can make progress if they are giving the right support and encouragement. Did I say encouragement? Yes, encouragement! Let me tell you, it is such a VITAL key for our children’s success.

6. I ignore criticism: As parents, we know there is always someone who comes to tell you that you are either spoiling your child or you are not doing a very good job, they seem to choose the exact moment when your child is having a sensory overload or meltdown in the middle of the grocery store and your hair is about to drop.

Entering into an argument with a complete stranger usually does no end up well and certainly, it does not accomplishes anything therefore, I ignore it.

Avoiding confrontation with people who do not understand what you and your child is going through works best for me and helps me focus on what is truly important: How to help my child at that moment rather than trying to “correct” someone.

7. I try not to sweat the small stuff: This is one of the hardest things to do and yet it is one of the things that can help you cope better. It is nearly impossible not to feel you have to micromanage everything around you in order for things to go smoothly, I get it. But we are only humans and you cannot run faster than you have strength.

Sometimes, your floor will not always look sparkly, maybe you didn’t vacuum the rooms today and the dishes aren’t clean but they are not going anywhere so they can wait!

Maybe your child spilled water all over the counter that you just took the time to clean, your Aspie daughter leaves her clothes all over the floor every day despite the fact you tell her not to do it or your adult son only wants to eat jello for breakfast, lunch and dinner.

It will drive you insane to fight and argue about these things every day, sometimes for your own benefit (And your child’s) you have to let the small stuff go for a little while and pick up your battles. When you do so, you will feel a little weight off your shoulders and you will be able to cope with your stress better.

8. I exercise: Just like singing, exercising also releases endorphins making you feel happier and energetic! It helps your heart pump beautifully and helps you keep in shape. This is certainly not about “looks” but about being healthy and fit which in turn will help you cope.

When you are fit, you feel “light” and you are ready to face all the world challenges and more! It does not have to be a rigorous exercise, anything that fits right with you and your body. I try every day to work a little on my abs, calves, do push-ups, pull-ups and squats.

When I have the chance, I play basketball and walk. One can only get older but the way we age has a lot to do with the choices we make. Autism is a lifelong condition and autism by three is something that it is always on my mind.

Choosing to go vegan and exercising are choices that I make in order to help me stay as fit and healthy as possible and avoid illness so I can help my children better.

9. I try to have a positive attitude: Which does not mean, it is all the time. Just like most of you, I have my “moments” but I take them in, ride with them along and move on.

My boys are like chameleons, changing constantly and going through phases, sometimes it is very hard to keep up with all the changes but I try my best to focus on the positive aspects and try to have a calm approach to the negative ones, I know it is easier said than done and it’s okay, we are all here to learn and no one is perfect.

When you realize how many children in this world live (Survive?) every single day without a parent present, you can put things into perspective in your own life and realize how blessed your child is to have you in their life. Your child might not talk as fast as you would like him to but if he is saying a few words, cherish it. Your daughter might take years to learn a new skill, instead of focusing how long it took her…focus on the fact that she did it.

10. I accept Autism: Perhaps this is the number one point that a lot of parents struggle with but one that helped me from the first day. I accept Autism and it is not going anywhere.

I am not ashamed when I tell someone my children have autism. It is not a crime, it is not their fault, and it is not mine. There is absolutely nothing to be embarrassed about. If we want society to understand and accept our children as they are, then we need to accept them ourselves.

We should never, ever feel we need to hide from others the fact that our children are on the spectrum. I don’t have to “fight” autism because it is going to be a lost battle but because Autism carries a whole lot of challenges, instead of misusing energy in feeling sorry for me or my children, I have to use cleverness in order to “mold” autism in a way that can make it work for them individually.

Accepting the fact they are on the spectrum is the first step to help them reach their full potential.

The recent news of a good Samaritan helping a differently-abled man touched the hearts of thousands of people around Trinidad & Tobago. As a mother of 3 boys on the spectrum, it is always so uplifting to see that there are people around who care about others, particularly those with special needs and who are not afraid to show it by actions.

The aftermath of this wonderful story is something that has been on my mind recently. Because of the kindness and compassion shown by this young woman, it resulted in a meeting with Prime Minister Dr. Keith Rowley, who praised her and commended her for what she did as well as given an award by a Mayor. The media was present and many in government felt very comfortable to pose for a picture with this impressive young lady.

During the budget debate, one of the Independent Senators Mr. Roach, who is differently-abled and uses a wheelchair, expressed his disgust over the politicians posing with this good Samaritan as he lamented very little or nothing has been done to help the disabled in this country.

Don’t be posers, help the differently-abled

This statement is very true. As I type this, nothing has been done to help the autism community in Trinidad & Tobago. No amount of letters or meetings seems to touch the hearts of those who are supposed to take care of EACH and EVERY citizen in this country. Our children on the spectrum are still NOT able to access free public education, they are unable to receive free public therapy and they have been abandoned for many years by apathetic, heartless and unperturbed governments who never cared about seriously helping the special needs community in Trinidad & Tobago. But they surely care about smiling for a picture.

They do not understand and they do not want to understand. They have been informed about the serious challenges parents of children and adults with autism are going through every single day and they still choose to turn a blind eye, put on a steel face and try to attach themselves to an act of compassion performed by a single person thinking that it makes them look better. It does not. It makes them stand out even more (And not in a positive light), for what they are supposed to do as far as taking care of all citizens in this country.

It is any government’s solely responsibility to ensure its citizens are provided with proper health care and education, it is not a favour they are providing to their citizens. It is their job! When you have people in power to make a difference, who are aware of the needs of the most fragile and vulnerable of society but they simply choose not to do anything about it, what does it say about them?

How frustrating it is for any parent not able to provide an education for their child in 2016. How frustrating it is for any parent not able to provide life-changing therapy that could help their child live a dignified and meaningful life. How frustrating it is seeing other children growing and progressing and our own children suffering the consequences of neglect by way too many governments for way too many years.

Just last month, former TTUTA President Davanand Sinanan who I met and discussed the needs of autism parents stated:

“We have never acknowledged our responsibility as a State – and I am talking about society here – for special education. It (The responsibility) has been carried by faith-based organisations and NGOs…the State is yet to acknowledge its full and total responsibility with regard to special education.”

Registered special education schools to receive gov’t funding

Education Minister Anthony Garcia quickly agreed with that statement and stated that a decision was taken at the Cabinet level to provide assistance to 12 registered special education schools. They would pay teacher’s salaries and cover infrastructural needs for them.

Now, this is an issue that I have addressed multiple times in the media as well as private meetings with those in government. As an autism parent, how does funding special needs schools help ALL children on the spectrum in this country? If only a very minuscule group is able to access them? What about the rest of children? What about the adults? What about the qualification of these teachers? Is there an evaluation process to ensure these schools are run properly or is it that money is going to be thrown at them without any kind of accountability with regards to what happens indoors?

A lot of these schools cater for the physically challenged only and those who cater for children with other disabilities are overcrowded. We are talking about autism here, a neuro-developmental disorder that affects each child differently; this is a UNIQUE condition that needs to be treated in an UNIQUE way. Some of these schools also possess their own criteria as to what kind of child they are able to accept and work with and the list goes on. It is beyond me why any person in authority and with the capacity to do something proper will think giving a handout to schools is the SOLUTION of these issues.

He further more stated that special education is also being attended to even in our mainstream schools. In the same link posted above he stated:

“We have a section in the Ministry of Education that we have been talking about all the time – the Student Support Services Division, and they are actively engaged in providing support to our special needs students. We have in our system what is referred to as ‘students aids’, where persons would sit with some of our students who have special education needs and assist in whatever way they can.”

It is either Mr. Garcia trying to say something to portray that the Ministry is actually doing something about these issues or he really does not know what is happening within his ministry. Such casual statements. As APATT’s President, I have received many complaints from parents about Student Support Services NOT providing aides for their children, the lucky ones found aides through their own parents and the ones who did have aides were assisting these children for very short periods of time.

These aides also did not possess proper qualifications to work with children with special needs, in many instances they were OJT personnel staying for a few months. For a child on the spectrum, sudden changes can be very traumatic. You do not provide an aide to a child with autism for four months and then you leave him/her without assistance. What kind of service is that?

Why such a lack of professionalism in the Ministry that is supposed to know better? In my own personal experience, I have been trying unsuccessfully to meet with them to discuss the serious concerns autism parents are faced with daily. So not sure what exactly Mr. Garcia referred to when he said they are “Actively engaged” in providing support, the feedback received disagrees with the statement 100%.

He did not end there; he also stated that special education was now being incorporated into teaching methods at regular schools. Really? As an educator myself, how exactly is this being incorporated? It is very easy to make loose statements such as this without providing the proper details and explanation as to how exactly the Ministry is addressing these issues.

How is it possible that in 2016 there are no public schools that can cater exclusively for children with autism in our country? And I am not talking about a regular special needs school where you have children with physical, mental, social and developmental disorders all crowded in the same place with (In a lot of cases) unqualified teachers and expected to grow and learn.

No, I am talking about a PROPER PUBLIC school that can cater for children on the spectrum with qualified teachers. That’s what is needed, not a handout to a dozen schools that supposedly can cater for the special needs of the entire nation? Is this a joke?

Now, going back to the story of the young lady who helped the differently-abled man… I think it is fantastic this young lady is getting recognized for what she has done…but I cannot help wondering who is talking or asking about the gentleman in the wheelchair who is the one TRULY in need here? Who is he and what kind of help is he receiving/needing? What kind of gift or assistance did he receive?

Why is it too much to ask that PROPER assistance be rendered to children with autism in Trinidad & Tobago? The emphasis should be on PROPER, NOT a handout thinking it solves the problem. It does NOT.

I want every single child in this country to access schools and therapy free of charge. These are NEEDS, not WANTS. And no one can tell me this is a case of “give me give me” welfare or begging… and that we need to “wean of” government. Excuse me? If anyone talks like that, they do not know or understand the responsibilities of any government. That’s what taxes are for and like thousands of people in this country, parents of children with autism are tax payers and if they are not going to use our taxes to invest on proper education and health care to address the desperate needs of our children, then where exactly will the money be going?

Let’s make something very clear. We, parents of children with autism, are not begging. We are asking what is RIGHTFULLY already of our children. Is any government ready to take care of adults who were unable to receive therapy and education as children due to neglect on their part? The answer is simple: NO.

Things will continue be the same as long as those who can change it all are immune to the pain and suffering of others and whose arrogance surpasses compassion.

But they are picture-ready.

As Autism Parents, we tend to constantly be ensuring that our children have everything they need, many times at the cost of neglecting ourselves. Because let’s face it, in reality if we do not ensure we are taking good care of ourselves, how could we really help our children properly? I decided to make some changes in my life that have brought me great energy, the ability to think more clearly and at the same time feel amazing…I became Vegan.

For those who are not very familiar with what it means to be a Vegan… Veganism is a way of living which seeks to exclude, as far as is possible and practicable, all forms of exploitation of, and cruelty to, animals for food, clothing or any other purpose. If we are talking strictly in terms of diet, vegans exclude meat (And yes, fish included), all dairy, eggs and honey. It is one of the best decisions I ever made. I also try to exercise regularly and will soon start running as well. I blog all about Veganism here:

Trini Vegan Blog

I think it is imperative for each Autism parent to do things that will help them physically and mentally. I believe exercising is a great way to release stress as well as getting some of those “happy” endorphins. But exercising and feeding your body trash at the same time makes little sense, not so? So both exercising and nourishing your body properly can help you feel great and have the ability to cope better with the challenges associated with parenthood and autism.

As an Autism parent of 3, I cannot afford to be sick because if I am sick, my boys will feel the consequences. People are surprised when I say I haven’t been sick in years and I mean years. No flu, no cold, no stomach aches, no vomiting, no nothing! This isn’t because I am lucky, I believe there is a strong correlation between illness and what we eat but we are so used to being sick that we seem to pass it as something ordinary and normal.

We are worth it; we do deserve to treat ourselves with love and respect. We only got one body and one mind and I am convinced that making the right choices with regards to our physical being can help us and our children better because they need us strong and healthy. Autism isn’t a walk in the park for many parents, it requires sometimes all your physical and mental energy as well as vitality to cope and go on. Just imagine how better you could be if you decide to start exercising today, start making right choices with regards to foods and head towards the road of health.

We can make a million excuses why we cannot do it but as we get older and realize life is precious AND very short…we will also realize it is time to make a few changes that can help us in the long run and benefit of our children. A child with autism becomes an adult with autism. They will always need us and we need to ensure we are healthy enough to go through this autism roller-coaster in the best shape possible.

You can do it! .

I have the wonderful opportunity to talk often to other parents with children with autism and hear their personal stories. Often times, they just need someone to talk to and listen to their personal journeys.

An elderly sweet lady from Central Trinidad who has an adult child with autism told me recently that her son never received any sort of therapy for his entire life (He is on his late 40’s). She is unable to go out, does not know what a vacation is and never had an hour of respite care for the past 30 something years. What an amazing example of unconditional love and sacrifice!

Words cannot express how much I admire parents like her. She was not complaining about it at all but simply trying to share with me what life is for her. She cannot afford therapy for him and she stated that most professionals she contacted do not work with adults on the spectrum anyways.

Her life, she said, is about trying to keep her son calm at all times, 24/7 because he can get in some serious rages so basically she goes with the flow, whatever her adult son wants she tries to provide to avoid meltdowns and situations that she will be unable to control due to her age and fragile health.

Most of her challenges are all too familiar because unfortunately they repeat throughout many other families I speak to. Take for example this single mother of 2 young children with autism. She provides for them by selling small items in a local little shop but things are very hard and she is barely making enough money to put some food on the table.

Her two children are low-functioning/non-verbal, they are not going to school, she has no family support and because she is not very familiar with autism, she gets frustrated at their behavior. Almost in tears she asked me what school she can send her children to. I was trying hard to find the right words to say to this struggling mom but I really all I could think of was: What school??

Is there anything more frustrating as a parent than the inability to provide for the needs of your own child? A lot of these parents have the blessing of having spouses who can help provide financially and emotionally for their entire families but there is also many single parents among us who are doing everything on their own and often times relegating themselves for the sake of their loved ones. The latter, deserves more than a simple acknowledgement. They are the bravest group of people I can think of.

When I talk to these parents, I feel like part of me leaves with them because their pain feels oh so familiar and I am sure a lot of you can also relate to some of these challenges. It also makes me realize that I am not alone on this journey, that there are hundreds and even perhaps thousands of families in T&T going through similar situations and that each one of us regardless of where we are with regards to autism, are more alike than different.

Today, I want to propose a toast (with water for me because I don’t drink alcohol) for EACH ONE OF YOU. For the tremendous work you do with your children, for the immense love you show towards your loved one, for your warrior-like spirit and for the amazing strength you display regardless of whatever obstacles are in your way.

You have made it so far and you WILL continue making it because you are amazingly strong. So let me see that smile, wipe away those tears and let’s see what autism has in store for us tomorrow. I know I will be ready and so will you! .

The largest organization on Autism called Autism Speaks created the “Light it up Blue” initiative back in 2010. Basically, businesses are asked to light their buildings blue to bring public “awareness” about autism but before you decide to support this campaign, please consider the following:

1. AUTISM SPEAKS

In 2012, Autism Speaks spent less than 4% on helping autism families (US$2,048,552) but spent a whopping US$18,484,028 in salaries. What about as recent as 2014? They spent over US$120,000,000 and just 3.84% of that money towards family related services. An obscene US$52,935,472 went to advertisement to keep the donations coming and an equal outrageous US$23,300,191 in salaries. What about families? At the bottom, they received a mere US$4,631,690.¹

The most important factor is that organisations such as the Autistic Self Advocacy Network (Run by individuals on the spectrum) do not support Autism Speaks. Yes, you’re reading well. Therefore, why promote an initiative that those on the Autism Spectrum themselves do not support? It is time to listen…

2. BLUE IS NOT THE COLOUR OF AUTISM

The colour blue has erroneously become symbolic of autism. Selfies of well-intentioned people wearing blue t-shirts are posted in social media and blue balloons are thrown in the air in dramatic fashion to “support” autism. Lots of decorations: blue puzzle pieces, blue buttons, donations and oh let’s not forget the pictures, key ingredient in this whole autism collage – lots of them. The ironic part is that Autism does not have a color. Blue is the color of the Autism Speaks Corporation.

So when you’re wearing blue or Light It Blue, you need to be aware that you are actually supporting an organisation that is making millions of dollars using Autism as a brand and only a tiny percentage of what they receive goes towards helping actual Autism families or individuals financially.

Just recently, I was asked by a local business what we planned to do for Autism Awareness Day surrounding the Light it Up Blue campaign. I explained why I do not support the initiative. I get it. It is easy to just put on a blue t-shirt, take a picture and think you are spreading awareness about autism. I know people mean well of course, but please do know that you’re actually helping promote an organization that cares little for those on the spectrum.

3. OBSERVATION NOT CELEBRATION

In 2007, The United Nations General Assembly declared April 2nd as World Autism Awareness Day to highlight the need to help improve the quality of life of those with autism.They invited all Member States as well as other autism related organizations to observe World Autism Awareness Day in an appropriate manner, in order to raise public awareness of autism.² The key word being observe and not celebrate.

When I see blue lights in buildings, I am deeply saddened. Lots of money burnt just like fireworks. The money these businesses are spending in buying blue lights could be put to good use and pay for some therapy for individuals with autism who are unable to afford these services, we have so many among us. :(Help should always be practical.

4. DONATIONS

Do you know if we were in the US, and the Light Up Blue Campaign is used to do any sort of fundraising activity utilizing the Light It Up Blue logo they must provide a minimum of 20% net proceeds to Autism Speaks?³

There are many questions you should ask yourself before venturing in supporting any initiative. Do the organizations you donate money to, display/state publicly and in total transparency how they are utilizing the money/donations they have received from private sponsors? (And in detail?) Or is this information very difficult to access or not provided at all? Do they give the impression that they are helping ALL families affected by autism in Trinidad & Tobago? Or the reality is that they are merely reaching a few, while the rest of the donations are lost in organizational structuring? Do these organizations support these campaigns and support Autism Speaks?

What can you do to truly help individuals with autism and their families locally?

Find a local family and ask them directly in what ways you can assist them financially. Maybe you can sponsor therapy or private tuition for their child. A kind note or letter from a well-meaning neighbor, preparing a nice meal for a family, inviting a child with autism to birthday parties or play dates are all great ways to show these families that they are not alone.

So next time, when you pass by any of the local businesses lighted in blue, just stand in front of the building, and ask yourself: How is this helping someone with autism? When someone asks you to support your business and Light it up blue for autism, ask yourself: How is this going to help an Autism family exactly? Because help is not lights, cameras and nice pictures, help is direct action for those who need it.

1. Source 3h and Source 1u
2. Source 5u
3. Source 3s.

I am looking for a teacher for my teenage son but not just any teacher. Let me explain…

My writings are usually twofold: state the reality of unacceptable procedures and experiences so things can change and communicate with Autism Parents about what is out there so they can make informed decisions. As you know from my blog entry titled “Special Needs Schools in Trinidad & Tobago“, many Autism Parents have to fork out big bucks (5 figure fees per term for mostly unqualified teachers) to educate their children or simply home school them. However, when a child is at the stage of CSEC more than home schooling is needed.

While governments continue to have their many lengthy conferences and talks about ‘what to do’ with regards to educating special needs children in our country, days are passing by with Autism Parents having to take matters into their own hands. In this blog entry, I want to focus on what is needed in order to teach a child on the spectrum. Many of you will eagerly say “Autism training” or “A special education degree” and even though you’re certainly right, that is only part of what is needed.

I want to back track a bit and focus on the service involved and the ingrained traits that don’t come automatically with a certificate such as patience, consistency, flexibility, understanding, etc. Let’s be honest, Trinidad is not known for its service, in fact most people complain about it and yet continue to patronize the establishments they moan over. Even the Honourable PM Dr. Keith Rowley, made a comment about our lack of customer service stating that he gets better service in a Burger King in Miami than in Trinidad. While others might still buy an item from someone who isn’t wholly hospitable, I, on the other hand will not put my children through that. No, no… when it comes to my children the person must fit certain criteria:

UNDERSTANDING – To be a teacher of a special child you need to understand your student. Knowing their strong points, how they learn and adjusting YOURSELF to suit is a must, not the other way around.

PATIENCE and FLEXIBILITY – Your special student may not get what you are saying the first time or the second or the third time. It may take going over the same material or statement many times. Get ready for many questions, voicing opinions or going off on tangents at times – the special child’s perspective of the world is different to yours so they comprehend things one step at a time.

CONSISTENCY – Keep times and appointments or if something unexpected comes up communicate it. Children on the spectrum do not adjust to change very well. If they are expecting to be taught a certain subject at a certain time, then follow through with it.

My children range between the ages of 7-15 so I can tell you from experience that in their younger years it was easier to find a teacher for them. However, older children on the spectrum aiming for the CSEC examinations but cannot keep up with main stream schooling, will find it more challenging to get ready for exams like CSEC because the syllabus is demanding, more explanation is needed and one on one instruction will need to take place. A lot of mainstream teachers, do not like putting extra time into a special child because it takes away from other students’ time.

The other issue is the incessant bullying by both the teachers and their peers – for a special child this makes bullying an astronomical task as it would for a neurotypical child. Just imagine a child on the spectrum who struggles with sound has to hear noisy students from surrounding classrooms while trying to remain focused. In the end, private tutoring is required at the level of CSEC. The cost of such an undertaking for 5 ‘O’ levels is massive.

Now, with all that said who can you recommend as a registered teacher (Does not need to be a special needs teacher) who is experienced in preparing students for the CSEC examination as well as possesses those characteristics previously mentioned?

Small groups or individual attention preferred. Please use the comment button below or contact me.