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Dear Honourable Madam Prime Minister Kamla Persad Bissessar,

I am writing you this letter as a mother of 3 children with autism living in Trinidad. Rest assured, I have no political interest or affiliation. My only alliance is with my children as their progenitor, protector, caregiver, teacher and advocate.

At the 34th Meeting of the Conference of the Heads of Government of the Caribbean Community (Caricom) in 2013 you disclosed a very personal piece of information when you stated: “My granddaughter is autistic”. I was elated, I thought that for the first time a high-ranking politician, that happen to be a woman and a mother like me would understand or empathize deeply with the serious struggles of a fellow mother trying to raise 3 children under the autism spectrum in a country that provides very little resources.

Is it that you have forgotten us? Is it that your government does not consider our special needs children important enough or worthy enough as to ensure they can reach their full potential?

Madam Prime Minister, the Minister of Education has been saying for years that the Government would ensure to provide psychologists, aides, and therapists for special needs students in the school system as well as the construction of special needs schools. You have stated in the past that differently-able children have been neglected for far too long and measures are being put in place to assist those with special needs.

I am glad that you recognize that our children have been neglected for so long but let me categorically state that they continue being neglected since none of the promises of past Ministers and Prime Ministers as well as the promises of your present government have come to fruition.

What exact measures that have been put in place are you referring to? Certainly not the construction of special needs schools for children under the autism spectrum. Certainly not programs that can provide between 15 to 40 hours of weekly needed therapy for them. Certainly not programs that can provide respite time for home-bound parents who take care of their children 24/7 without any help or assistance.

Certainly not bringing specialized doctors that can assess and diagnose the children. I read that you have plans to provide laptops or tablets for Primary School students as a gift to them. What about autistic children who are the ones that need it the most? Why not them? Did you know that tablets are used worldwide to help children in the spectrum to communicate and learn?

Madam Prime Minister, do you know that parents have to wait for at least one year to see a doctor in the public health sector and start the process of getting their child assess? Do you know that a lot of parents have to sacrifice all they have in order to pay for private assessments that cost thousands of dollars? Madam Prime Minister, are you aware that they have little choice but to pay for private therapy that cost hundreds of dollars per half an hour session?

Parents are forced to put their children in the public school system without an aide or homeschool because they cannot afford the exorbitant fees of private schooling. Fees with 5 figure numbers, please imagine that. Fees for places where not all the teachers possess formal qualifications in special education.

I am quite confident that you are aware that children under the spectrum are exceedingly bright and the methods used to teach them must be different from the ones used for neuro-typical children. Autistic children need their own school since their method of learning is not based on ‘cramming for examinations’ but life skills, therapy, learning to self-regulate, social skills, etc. Lumping students with different challenges and call it a “Special Needs School” is not the way to go.

No, Madam Minister they need a place of their own with qualified and caring professionals that every child no matter their background or financial situation can attend, a place of refuge in a world that they struggle terribly to understand.

We need help here and now. I do not want you to think that the solution of these issues will be Government funding private organizations associated with autism and believe that it is enough to help the parents. It is not.

Private entities run their organizations according to their own regulations, their interpretation of what is needed and their own priorities. What is desperately needed is proper and public-Government schools and programs for children under the spectrum so parents do not have to rely on private entities or private therapists. This is just the tip of the iceberg of the countless issues that we face every single day in Trinidad and Tobago.

Honourable Prime Minister, I’m just a mother of 3 children with autism who will not stop advocating for them, who will not stop speaking up about the struggles and realities of autism. A mom who will move the Earth if necessary for someone out there, in power, caring enough to listen to my plea and decide to DO something about it. I repeat, to DO something about it: No empty promises, no plans, no words…

Actions.

Update: The Minister of the People and Social Development acknowledges this letter and I await further word from her.

Whether it is family, friends or even strangers people can get quite uncomfortable when they find out that you have a child under the autism spectrum. They do not know what to say. I suppose it is normal, I mean think about it…Who in the world is ready to utter a word right after someone says: “My son/daughter is autistic”.

Ha, if you think that’s shocking I feel like grabbing a camera and recording people’s reaction when I say: “My three children are autistic”. You mean three? Like number 3? Tres? Yup, THREE. By the look of their faces, you can tell they are trying to contemplate what the heck they can say in a situation like that. Should they tell you congratulations? (Seriously?) My deepest condolences? (Um, no) Or the infamous “Oh, okay” followed by the sound of crickets chirping and then quickly changing the subject about the increase of price of KFC.

Well, for the past 15 years I heard many things that well (And not so well)-intentioned people tell you when they find out about our boys. I said well-intentioned people because I know they are trying to be nice. A few others are just trying to get your money. Now, understand where I am coming from. I have said some of these things myself before becoming a mom so I know why people choose to say those things but you also need to understand that I have been hearing them over and over for more than a decade! So cut me some slack will you?

1. God sends special children for special parents. Well, to be honest I just see myself as a regular mom and my husband as a regular dad trying to perform a formidable task. Most of the time this task is way too heavy to carry over our shoulders but really, there is nothing inherently “special” about us. We just happened to have 3 children with special needs, living in a place with hardly any resources to help them and trying very hard not to become insane in the process. Most of the time is a cycle of failing and trying again, failing and trying again. We are certainly not superheroes.

2. Upon hearing one of my children trying to speak: Awww, he is speaking Spanish. Did you ever watch Dora The Explorer? How in the world a child mumbling some words that you AND *I* are not able to understand suddenly becomes Spanish? I know some of the words might sound strange to you but come on, Spanish…you know hola, taco, etc? At least, choose a more exotic language!

3. They do not look autistic. Really? And how exactly do autistic children look like? *crickets chirping*. Hmph.

4. Did you ever watch the movie RainMan? Of course I did! When I was a teenager I watched this film but not for the reason you think, I thought Tom Cruise was a really good looking guy. AND by the way, what some neuro-typical folks do not know is that the character of Rainman is just ONE model of someone with autism. Not every autistic person is like him.

5. God will never give you more than you can bear. Well, if God is behind all of this, he is really pushing it.

6. Them: I really need a favor. Could you please help me plan XYZ? (Birthday party, vacation, etc)

Me: I won’t mind but I have 3 autistic children to see about (*tells long story here about limited time, meltdowns, etc*)

Them: Oh no, wow, I am very sorry to hear!…Sooo….are you going to help me or not?

Seriously? I just told you I have 3 children under the spectrum! Having time to even use the bathroom in peace is a luxury!

7. Are you sure they are autistic? No, I am not. I like to play doctor in my non-existent free time and diagnose my own children. Plus I just enjoy telling others they have special needs (*sarcasm*!) Are you seriously asking me this?

8. I saw this movie where they show this autistic child who is a genius! So inspiring! An autistic genius is called a savant and yes there are a few out there and the media tries to highlight this type of autism a lot even though the vast majority of autistic people are not savants (Or at least they haven’t discovered that they are).

Unfortunately, the reality that they do not show you is that within the spectrum there are children (Of ANY age) who are unable to speak or do anything for themselves (Very low-functioning) and their amazing, dedicated parents have to feed them, bathe them, change them, take care of their monthly cycle, etc. These parents are what I call, parents of the year. Hats off to you Moms and Dads. You do a wonderful job.

9. Oh, you do not have it so bad. Your oldest can talk, etc. Just because some children are high-functioning does not mean life is no longer stressful. It certainly does not make children free of issues. High Functioning autistic children can do very well academically but they also endure constant criticism, bullying and rejection by their peers and even by adults. They battle depression, mood swings, understanding their role as children, and the constant need to fit in and understand their own complex mind so no, it is not a walk in the park.

10. Him/her: *After hearing your story* Oh, I can help you. I have many tips that can help your boys. I have a…(*insert educational related background here*)

Me: Really? Thanks! Please tell me!

Him/her: Okay…first you need to pay (*put X exorbitant amount of dollars here*) and then pay and then pay…. There we go again. So I have to pay you to talk with me (Even though you could well read the very thorough and recent evaluation my children had), then I have to pay you to talk to my sons to SEE…just to SEE if you could “help” so basically if you think you are unable to “help”, you ended up pocketing all my money without moving a finger. Money that took me years to save. Wow, thanks for the help!…NOT!

In the scenario that you can indeed “help” then I have to pay you to make your own evaluation and then I have to pay you again and again and again for the next following visits. Interesting definition of “help” you have.

There you have it. My top 10 ten things that people tell me when they hear I have three autistic children.

We need to find meaningful ways to help families directly affected by autism in Trinidad.

I wonder: How exactly having blue balloons being thrown in the air, a few nice words spoken here and there, lighting up all our buildings blue (Not the colors of Autism by the way but of a controversial organization called Autism Speaks) help our local autistic families directly?

Yes, the lady that has to carry her autistic adult child on her back and climb a set of stairs up on a hill every day? How does it bring any relief to the mother of an autistic child who bites her mother during a meltdown and the scars are visible for everyone to see? In what way is it helping them?

This campaign has become a fashionable trend worldwide to support a foreign organization (Autism Speaks) that spends less than 4% of their budget in helping autistic families rather than actually understanding that the real people that need help here are not being benefited directly.

Unfortunately, autism and related services worldwide has become a big business. Now, don’t get me wrong. I am not saying they should provide all these services free of charge; of course they have to make a living but when you are providing a very expensive service for autistic children and yet your staff is not properly qualified to cater for them, it is completely unacceptable.

Autism is not a celebration or a business. It shouldn’t be. What we do celebrate are the small and big achievements of each one of our children because we work so hard to help them achieve them and yet, they have many difficult and heartbreaking challenges. We are not superheroes; we are just humans performing a formidable task.

Raising three children on the spectrum is not a walk in the park, my husband and I wake up seeing autism; thinking about autism, talking about autism and trying to find ways to help our boys. We breathe autism. Autism Awareness Day is a daily event at our home.

For most families affected by Autism locally, year after year their children are not receiving 20 to 40 hours a week of free public therapy neither accessing free public schools. Where is the government responsibility and involvement in all this?

Do you wish to bring awareness? I think it’s great. Study and research about autism. Ask an autism family what is like to raise a child with autism, engage a child on the spectrum and observe what is like, become a friend! Ask a family what they need (I have serious doubts that they will ask you to turn your house blue) and if you really mean it: Take action! Do something to help them directly and trust me, they will be forever grateful.

Talk to the people dealing with these issues directly in ground zero. It is war out here and turning everything blue does nothing to help fight the battle.

In just a couple of days, people all over the world will be commemorating Autism Awareness Month. A lot of buildings will be lightening up blue as a part of an initiative to bring global awareness about Autism.

Every time I meet someone who finds out that I have three (3) children under the autism spectrum (I believe my family and I are probably the only ones in Trinidad and Tobago with three autistic children), the following question is asked: How do you do it? And my answer always remains the same: “I really do not know”.

What I do know is that you have no idea how strong you really are until you are placed in a situation where being strong is your only choice. Not for you, but for your children.

Even though I understand and applaud any campaign that helps to bring awareness about this condition, I think we should emphasized more the “Action” part.

Yes, we can light up in blue so many buildings in support of the initiative, and while that’s wonderful and commendable, what about an initiative that can help families with autistic children directly?

What about an initiative that can help bring awareness at the lack of local resources? What about an initiative that can create the first public school for children under the Autism Spectrum in Trinidad?

What about an initiative that can bring some sort of respite for the many parents who need a little time for themselves? What about an initiative that can bring specialists in autism on a yearly basis and they can evaluate/diagnose children who seems to have autistic tendencies and not merely coming to give conferences where parents most of the time must pay in order to participate?

So I’m sorry if I don’t get very excited about wearing a t-shirt that says “April is Autism Awareness Month” Or encouraging your business to light up blue because I’m too busy trying to get my boys some sort of needed therapy in a place where resources lack terribly and where everything is overpriced.

I’m sorry if I don’t take a picture during awareness month or participate in a walkathon year after year after year under the hot Caribbean sun or purchasing a t-shirt in support but I think my time and work is more valuable at home when I attempt to teach my oldest some social needed skills and try to understand his complex mind in a world that does not understand him and he doesn’t understand.

My youngest to read, talk, help him cope with his sensory related issues specially when we are outside and get him to do things that for most people is not a big deal such as eating using utensils and my middle…well, just trying to bring him back to me from his autism world.. A daily, difficult challenge where tiny steps forward are giant ones in his life and mine.

If you know anyone with a family member with autism, a neighbor, a co-worker, anyone…you can make a difference in their lives by reaching out, not in the form of a t-shirt…or a blue light but by doing things that could help them directly.

Most parents with children with autism are homebound, so dropping by without letting them know isn’t a good idea, and please don’t get upset when they cannot meet you or entertain you at home because the reality is that their lives are very, very, very different than yours. They are not trying to be anti-social; they are trying to cope with their reality. All they need is understanding.

A lot of children under the spectrum have also sensory-processing issues so certain places, people, smells, lights can affect them and their behavior so their activities are extremely planned and organized for their sake and their parent’s sake and I know for some, they are not fun to be around but that’s okay…They passed the stage of wanting to be socially acceptable (As a matter of fact, I think most parents of children under the autism spectrum passed that stage when their children starting having meltdowns in the middle of the street because they saw a fly, smelled something wrong, etc.).

All we want to do is help our children.

If you know anyone with children under the Autism spectrum you can help by doing the following:

1. Don’t judge/assume. So you see a child in the middle of the supermarket throwing a tantrum? Could it be just a spoiled child wanting his/her way? Yes. Could it be an autistic child having a sensory meltdown? Yes. Give them the benefit of the doubt, because regardless of who they are they need your help, not your judgment.

2. “Don’t you think you should…”. Trust me, you don’t know what is like. You might think you know what is like but you don’t (No offense). Parents of children under the spectrum research and try different methods on a daily basis and even though we know most of you have the best of intentions, the methods we use with our children are different than the ones you use with neuro-typical children so please don’t be offended if we do not follow your advice.

3. Write some encouraging words to a parent of an autistic child. It doesn’t have to be long or laborious. Just a simple, caring note can make their day. Whatever you write, never say things like “Oh, I feel so sorry for you… ”

4. If you have children, please invite an autistic child to play dates and birthdays. A lot of them live isolated lives because other children and their parents isolate them. They want and need friends just like yours and they know when they are not wanted.

Please teach your children about including those who are perceived as different because in the end, we are all different in our own way but make sure they understand that even though our children with autism need empathy, they do not need sympathy. If they get to know an autistic child, they will know how wonderful and intelligent they are! They just need extra patience and a little consideration.

5. Listen and be a friend. Sometimes, all we need to do as parents is to rant a little and share how we feel.

6. Help others understand that Autism is a neurological condition and our children are as smart as the rest, they just learn differently and they have trouble in social settings. Just think about an autistic person as a foreigner coming to a new land, trying to adapt to their new environment, learning a new language, culture, etc.

7. Please do not use the word “Retarded” or “special” (Sarcastically) when you are attempting to describe a situation, insult others or make fun of your friends. It doesn’t matter whether or not you mean it in that way but it is both hurtful and demeaning and an insult for children with special needs.

8. If you see me with my children, please talk to them! Do not ask me questions about them in front of them. You do not need to feel awkward; I can help you communicate with them if they are unable to reply..do not pretend they are not there or that they are deaf and you have to speak louder or that they cannot understand…please, don’t assume. Just try.

9. If you meet someone with autism, you just met ONE person with autism. The spectrum is huge and just because our children might not display the same behavior than the one you met, doesn’t mean they are not autistic so saying they do not “Look” Autistic, doesn’t help. Help by learning about autism and teaching others about it.

10. Share this blog post and let others know that Autism Awareness Month is a daily, 24/7 occurrence for a big group of dedicated parents all around the world who work, fight, cry and even beg to provide the therapy their children need in order to help them reach their full potential. In Trinidad specifically, fighting stigma, ignorance and lack of resources.

If you want to help and you mean it, just ask.

UPDATE: The Trinidad Guardian Newspaper featured this blog post in two separate articles on April 14th, 2015. You can check the following links to read it online: Source 8 and Source 3

PART 2: Source 3

I am a big believer that children learn best through giving acts of service to those in need (And adults too) so when I heard that my students would get a chance to visit an Elderly Home, I was very excited about the whole idea. And then I met Patsy…

At first, I was a little apprehensive. Even though I’m usually very confident in social situations…as years pass by, I become increasingly nervous and shy around people that I do not know. So when Patsy saw me for the first time, she immediately came to me and gave me one of the most genuine smiles that I have seen in a while. Of course, I smiled back. I do not know Patsy’s story but I know she has one. She is not very old, not old enough to be in an Elderly Home anyways but she is there and she shines like a star in the middle of a place where it looks like few smiles are giving and few smiles are received.

I asked her name and she just looked at me and smiled. She started making gestures to explain to me what she wanted to say. We reached in a moment where most of the residents in the Home where singing praises to God. I admit that listening to the lyrics and observing them touched me deeply.

One of the songs said: “God is not dead, he is alive”, “God is good!” and these words were being sang by the sweetest people I have ever met, people with serious physical challenges that would require 24/7 supervision. My mind couldn’t avoid questioning: Why would people that probably have all the right to be bitter about life is singing praises to God?

I started singing and dancing with my students to cheer the residents up when Patsy decided to join me. Her beautiful toothless smile captivated me. She took my hands and started dancing with me and in that very moment it was like nobody else was in that room, it was just me and Patsy dancing.

The expression of her eyes reminded me of someone…I couldn’t tell who and I couldn’t stop watching them trying to figure out who she reminded me of. And then all of the sudden, I realized that her smile and sweet innocence reminded me of my middle son, my moderate autistic 8 year old… The one that struggles the most with communication, the one that displays the most autistic tendencies. And in that very moment, in the middle of the dance…I just shed a tear…it reached me so deeply that I couldn’t avoid it. My students thought the whole experience touched me and even though they were right, I was deeply moved because I was seeing my son in Patsy…

I was dancing with him. I was dancing with my boy…seeing the innocence of his eyes; I was seeing the purity of his smile…so excited about the most simplest of things and all I wanted to do was to love Patsy, hug her, kiss her… tell her that she is loved…tell her that hope things work out for her, tell her that I do not know why she doesn’t understand when I talk with her and that I do not know why she cannot speak much but that I was enjoying dancing with her a lot.

For those few minutes, Patsy was MY son. Any of my three autistic sons could be the one living in a Home like her… and I wished that every single person that meets this sweet and beautiful woman treats her with the kind of love and respect she deserves and needs…

And as I was dancing with tears in my eyes…the darkest fears of every mother and father with children with special needs came suddenly to me like a rushing wave, without warning, hitting me in the most deeply of my soul.

What if my children ended up in a Home like Patsy’s because they cannot fend for themselves? What if something happens to me? What if people take full advantage of them? Who is going to be there to protect them, love them, care for them? Would I be screaming from the other side of Heaven and imploring God to show some mercy upon my children?

I reached home that afternoon from work. My heart was heavy. I looked at my middle son and simply said: You are going to be okay. You have to.

He looked at me smiling, completely unaware of what I was thinking and saying and simply said excitedly: “Mommy is home!” And for him, it seems like everything was just right with the world.

For most people, holiday celebrations are a time of laughter and joy. For my family, which includes three children on the Autism Spectrum, it is nothing short of a horror movie or a torture chamber and no, I am not using hyperbole.

Autism is a neurological condition that affects how a person communicates and relates to others and as most of you know, it is also a lifelong developmental disability that affects hundreds of people in our country. It is very common for persons with autism to also have co-morbid conditions such as sensory-related issues.

For a lot of autistic children particularly, the sound of any sort of fireworks is their worst nightmare because the way they hear noise, compared to us neuro-typical people, is hundred times amplified so basically they feel like they are in the middle of a war zone and they are about to die. Can you imagine how a child with autism feels every time you choose to “Have fun” by throwing a scratch bomb?

I spent hundreds of US dollars in hi-tech, sophisticated headphones designed to deal with these sorts of noises to no avail because there is the element of unpredictability that cause them a huge amount of anxiety and distress. Who can blame them?!?

Every time my middle son hears one, he screams at the top of his lungs and cries inconsolably for HOURS and let tell you, trying to console an autistic child for HOURS who is having a meltdown is not a walk in the park.

My youngest, covers his ears, runs to me and starts sweating profusely and starts breathing heavy, crying, screaming and I can see his little heart beating at a very fast pace. My oldest, becomes enraged when he sees how it affects his siblings and is literally up all night without any sleep and my whole house, that already experiences a daily dose of chaos and stress due to raising three children under the spectrum, has to now deal with an element that we have no power or control over and it becomes completely out of control.

Can you imagine how all of this is affecting my family? Can you imagine going through this torture every-single-time you decide to throw a firework? Can you imagine the fear, pain and distress that is causing to hundreds of families with children on the Autism Spectrum in Trinidad?

Is there anyone out there with a little compassion left? Is there anyone out there that after reading this will decide to STOP using fireworks? Are there any serious politicians reading this who can take this issue seriously and bring it to the attention to lawmakers that can make the use of fireworks by ordinary people illegal in this country? Is there anyone out there willing to make a change and make life a little easier for those children with disabilities like mine? They want to live too, just like you and I.

Please, stop using fireworks. Do you want me to beg? I’ll beg for my children’s sake: PLEASE, I beg you, stop using fireworks. Your short moment of laughter and entertainment becomes a torturous, agonizing, anguishing and distressing time of torment for my children. Have a heart, that’s all I’m asking.

I know people, it has been a while. Between holding a full-time job and try to cope with the stress and the demands of a family, I did not have the time or energy to keep up with the blog, I apologize but let me use this blog post to update about how the boys are doing:

Our oldest son:

He is going to school and I was told he is one of the top two students which of course, make us very proud. He is strong academically even though he struggles with Mathematics a little bit, he enjoys doing his homework and learning new things. Of course, his challenges are mainly with regards to try to find his space in the teenage world where phones, girls, music and fashion are all the hot topics he is not really interested in. He is a like a little man and enjoys talking about religion, politics, science and psychology.

He can now travel back and forth on his own and is able to shop and do a few more things we would have never dreamed possible. His vocabulary is very advanced for a teenager because he loves to read the dictionary, so many times he would say a fancy word and I have to rush to the computer to find out its definition!

Of course, he has the need to feel accepted by his peers and a lot of times this is one of the hardest things he has to deal with but as he gets older, he seems to be comfortable in his own skin and try very slowly to understand that people perhaps just need ONE good friend in life and that having 5,000 friends on Facebook doesn’t mean someone has real 5,000 friends.

Our Middle son:

He hasn’t changed much although he has gotten taller and a little chubbier. He loves food. He still very rigid with regards to things being done in a the way he wants them to be done and needs to be controlled while in public. He is learning how to read a clock and he knows days and months and special celebrations such as Christmas. He has a speech therapist working with him as well as a behavioral therapist but to be perfectly honest, I haven’t seen an improvement in the speech or a decrease of his anxiety levels.

We believe that if he is able to calm down a little more, he might be able to learn at a much faster pace but again, this is not about how fast *we* want him to go but as fast as he is *able* to go, progress is slow but progress nonetheless.

He can now read a lot of words and short sentences, too but he is clever so sometimes he would try to memorize things instead of knowing them. His fine motor-skills are one of his biggest challenges but he tries his best and enjoys learning.

Our Youngest son:

His speech has improved a lot. He can also read words and short sentences and his awareness is increasing. I can have short conversations with him about things and he is able to respond appropriately. His hyperactivity levels haven’t decreased though. He is like an engine 24/7 and loves to run up and down the house and get Jonah all riled up.

One of the things I noticed is that out of three boys, he is the one that does not seem to know or enjoy how to play with toys. Our middle one is very good at playing with toys and taking care of them but our youngest plays with them for a few minutes and then he starts mashing them up or breaking them apart so when he is playing with toys, he needs to be supervised. We bought them a toy stove and they enjoy “Cooking” and putting toy pots on the “Fire”.

He developed a love for the movie “Frozen” so he watches this movie with me at night almost every day and he is learning the lyrics of some of the songs. It seems to be ingrained in his brain so much that the other day when I went to the bathroom to shower, I heard someone knocked the door and said “Elsa, would you like to build a snowman?”.

Our two youngest look forward to Christmas; our oldest isn’t really into it anymore although of course he enjoys the gifts. Our youngest believes in Santa Claus so he looks forward to all the presents he hopes to receive. Shopping for autistic children in Trinidad is hard, there aren’t many options taking into consideration their special needs, prices (Gulp!) and safety but nevertheless, we hope to make a nice Christmas for them that can create some good memories for the future.

I wish I was less stressed but fourteen years of autism have taken a complete toll in every aspect of my life but just like you all wonderful moms and dads, I try my very best and I love these boys to pieces or in my youngest’s own words: I love them with a million thousand hearts.

We are in October 2014, and our youngest is already very excited about Christmas. We went to the mall with our middle son and all the Christmas decorations got him thinking about this special time of the year.

As he grows, his awareness also grows and improves dramatically and has a better understanding of his surroundings often times, leaving me speechless at the questions he asks me or the things he says.

Today during dinner time, he was trying to explain to us how our middle one pushed him, I also saw him sticking out his tongue to make fun of him because he got more french fries. You know little things that neuro-typical children do on a daily basis but things that we treasure more as parents of three children in the spectrum.

Tonight, we were watching shows and out of the blue we had this conversation:

Him: Mom when is Christmas?

Me: Christmas is on December 25th

Him: *looks confused*

Me: Let me show you”¦(I show him the calendar and I explain that first it is October, then November and then finally December).

Him: So Christmas is just now”¦

Me: Well, it’s a long time from now, son

Him: *thinking* Santa Claus is coming Mommy. Santa Claus flies in the sky and bring presents for Mommy, Daddy, and everybody.

Me: *quite surprised* I smile. Will he say ho ho ho Merry Christmas?

Him: *opening eyes wide* yes, yes, yes and no white Christmas, nooooo”¦no white circles (Snow) noooooo…because it’s hot in Trinidad. No white Christmas, but “Green and grass” Christmas.

Me: *smiling* (I wanted to laugh at how sweet he was being but laughing when he talks sometimes gets him upset).

Him: Mom, Santa Claus coming inside the house

Me: Really?

Him: Yes, Santa Claus coming inside the house with boxes of presents

Me: *smiling* That’s great!

Him: That’s right. Christmas is great, Christmas is fun!

He drank his water, brushed his teeth… And I tucked him in bed. While doing that I could see he was daydreaming with Christmas and Santa Claus and all the presents he will open on Christmas Day.

It made me think that sometimes, we wish what others consider perfect “White Christmases” In their lives: Perfect lives, healthy children, perfect jobs and we beat ourselves so badly when we cannot achieve any of that.

The truth of the matter is that nobody has perfect “White Christmases”…yes, no matter what they say, we all have “Green and Grass Christmases”. Granted, some with more green than grass and others with more grass than green…but at the end of the day, we are all on the same page. Our struggles might be different, but we all struggle and trying to do our very best.

Watching the movie Frozen, the song “Do you want to build a snowman?” caught my attention immediately, it reminds me of my sons, especially my little middle one who is the most affected by autism and also reminds me of ALL the amazing, wonderful, loving and dedicated parents of children in the spectrum around the world that want to reach out to their little ones who often times are unable to answer verbally and who are living in their own world…

Do you wanna build a snowman?
Come on lets go and play
I never see you anymore
Come out the door
It’s like you’ve gone away-
We used to be best buddies
And now we’re not
I wish you would tell me why!-
Do you wanna build a snowman?
It doesn’t have to be a snowman.

Please, I know you’re in there,
People are asking where you’ve been
They say “have courage”, and I’m trying to
I’m right out here for you, just let me in
We only have each other
It’s just you and me
What are we going to do?

Do you wanna build a Snowman?

It doesn’t have to be a Snowman like the song says, you can build Sandmen for your little one. I know it doesn’t seem so, but your son or daughter hears you and feels your wonderful love. He/she might not be able to reply to you in the way you wish they could, but boy, hearts speak to each other so strongly and they speak with more words and more feelings than human speech will ever be able to achieve.

It doesn’t have to be a White Christmas and you know what? It is totally fine. You can have wonderful and meaningful “Green and Grass daily Christmases” And be just as great. Because you see, perfection isn’t about what the world tells you it should be…No…

It is about *you*, seeing beyond the imperfections and choosing to be happy.

Hi guys. Don’t worry I am here, super stressed and struggling but alive. These past few months, weeks, days have been extremely stressful particularly with our middle one. His behavior has become so challenging that the most accurate word I could use to describe it is simply unbearable. Older he gets, more acute his autistic symptoms seem to be and with a growing body of an 8 year old boy not matching his mind (His emotional age is perhaps of a three year old) is getting harder and harder to control him.

He needs supervision 24/7 because he gets into mischief very quickly: Plays with the toilet, hits/punches his brothers, screams when things do not go the way he expects them to go, teases everyone endlessly (To the point of physically hurting us while he laughs hysterically) and in public is no different. He does all of that and more.

Some time ago, we went to see a behavioral therapist to see if he could help our middle and youngest son. At first, they were somewhat okay but as the time passed their behavior became wild and uncontrollable.

After we were done with therapy, we decided to go to eat lunch. Unfortunately, our middle one is terrified of flies or any flying insect for that matter. He saw a fly and he just went biserk, literally. Started screaming at the top of his voice, kicking and trying to catch that fly. My husband had to physically restrain him and take him out of the restaurant, the problem is (As always) that when our youngest sees our middle one behaving like that, he does the exact same thing so I had to restrain him myself and hope he would calm down. I took him out, waited a bit and then went inside, packed our food and went back outside. By this point, my husband had to walk with our middle one up and down (Movement helps him) and get a few little items to help him calm down. It took a very, very long time. By this point, we were at the stage of ‘survival mode” and hoping to get home as fast as we could.

We got an indoor bouncy castle to bring a little excitement. In the first few minutes, they seem to enjoy it but after a little while they started fighting and becoming extremely hyper and out of control. How to explain it, it is like trying to fill a glass but there is a hole in the bottom. It doesn’t seem like we”Re able to fill it because no matter how hard we try, nothing seems to make them content and happy. We really do not want to reach the point of using medication for our middle one but is becoming really hard to deal with, we are on our wit’s ends.

Add to the equation that our oldest, even though he is very high-functioning, is going through puberty and struggling terribly to fit in with his peers who do not accept him. The way we raise him, with good values, etc is not considered “Cool” these days and even though it is somewhat normal for children to pick each other a bit, for a child with autism is like the world is about to end, especially if they hear people teasing them on a daily basis.

When I come from work after a very long day, he is usually in a very bad mood and does not know how to express his feelings appropriately so I am usually the target of his wrath and frustration so I try my best to keep him calm and teach him but his biggest challenge is that he does not want to hear what we have to say. So I reach home, and I have to deal with that, then clean the house, do dishes, prepare dinner and by the end of the day, I am so exhausted that I cannot describe it with words.

Waking up in the morning is becoming harder and harder and yes, I try to remain optimistic and positive about life but forgive me if today is not one of those days. We all have them, don’t we?

But just like the saying goes: “You never fail until you stop trying”. We are still trying.

Every year, millions of dollars are invested around the world to bring awareness about autism. Of course, it is a very noble cause because there are a lot of people around the globe who do not know what autism is and how it affects so many lives and families.

But I wonder, do we invest the same time, energy and resources to teach people about acceptance and respect for people in the spectrum? My goodness, it is awfully needed.

I was reading an article yesterday about this group of cruel teenage boys in Ohio who decided to trick an autistic teen and make him believe he would participate in the famous “Ice bucket challenge”. Of course like a lot of autistic children who want to fit in and be accepted, this young boy trusted them.

They told him to strip down and remain with his underwear and he did exactly as he was asked. He was waiting for the boys to throw the ice-water on him and film him but little did he know that the boys in question had other plans.

They took his phone and started filming, and a few boys did indeed throw a bucket of liquid to the autistic teen but it wasn’t water, it was a mixed of feces, urine and spit.
Afterwards, the victim was too embarrassed to tell his mom about it but she ended up finding the video by accident.

What about the recent story of the autistic teen who had a “Girlfriend” who filmed him while her friends put a knife on the teen’s throat and threatened him? The girls took the boy to a frozen pond near his home and persuaded him to fetch a stray basketball on the icy water. Of course, he had crashed through the ice and was able to clambered back up but fell again and was screaming for help but neither girl tried to help him. They even persuaded him to have sex with a dog.

The saddest part of it all? The boy does not understand why his parents want the girls to be prosecuted, he thinks they are making a big deal about it and he still wants to have a relationship with these girls and he defends them.

In Trinidad, we do not hear of similar stories (Which do not mean that it doesn’t occur) but autistic people and their families go through a lot of verbal abuse and scorn. Just recently, I was reading an article in the Newsday about this hard-working mother called Helen Ramcharan. Helen has a son, Stephen who is 22 years old and has the mind of a one year old.

A lot of people call his son “Retarded” instead of “Different-abled”, they suggest her to use the belt to get him to comply and even get offended when Stephen gets excited and starts jumping and laughing.

One time, Helen and her husband took him to the beach and Stephen threw water on a man and he started cursing in the worst manner, even after it was explained to him that Stephen is autistic. As a matter of fact, Helen stated that people cursed her a few times telling her to keep her “Retarded child home”.

So yes, I agree that bringing awareness about autism is a wonderful cause but we should also highlight the need for acceptance and respect towards people in the spectrum and their families. They are already dealing with high levels of stress, depression and anxiety and they do not need to be rudely lectured, abused or mistreated by people who are clueless about their situation.

Someone once said: “The measure of a society is found in how they treat their weakest and most helpless citizens”.

How is Trinidad and Tobago doing?