Category: Uncategorized

As a parent of special needs children and the President of the Autism Parents Association of Trinidad & Tobago (APATT), I receive a lot of positive feedback from parents about the Child Guidance Clinic South.

It is reviewed as a clinic with hard working professionals who are able to diagnose children in a timely manner and get them the appropriate help. Anyone wonders why the Child Guidance North Clinic located at Pembroke St, Port of Spain does not share the same reviews but quite the opposite? Clinics that cater for special needs should be empathetic, understanding and most of all professional. My family and I had the most outrageous experience at this clinic on Thursday, February 18th.

For the past seven months, we have been trying to get one of our children to see a psychologist. We explained clearly to one of the staff members at the clinic back in August, 2015 that it was an urgent case.

The person in question said they will call back to see if a psychologist could see him within the next two months. They casually contacted us in September, 2015 to give an appointment for January 2016. Later that month, they called back to cancel said appointment because someone on staff had a family situation.

Another call was received that month to state that an appointment was given for February 18th to see one of the children that we don’t have an emergency about. We were beyond confused as to what is really going on at this Clinic. Unfortunately, the nightmare does not end there.

We reached on time to our appointment on February 18th. They were late and did not start until a whole hour later. We met a social worker and a writing aide who spent between 20 to 30 minutes to decide what they were doing, talking about trivial things, cracking jokes, singing (Yes, singing), and so forth that were not related to our case even though we clearly expressed that we had children with special needs waiting outside.

The aide took an unusual active and vocal role during the meeting, they started with questions previously asked and for reports that have been already being submitted. The person we talked to from the start did not pass on the information from the screening. They did not have said reports and did not know where they were or who had them. Yes, confidential reports! Welcome to the Child Guidance North Clinic.

The interview lasted for four hours and it is certainly not the most upsetting issue of the whole experience. At one point, when they decided to meet our children privately, they said a few things that got one of our special needs children very anxious and upset.

How is it even possible that these people are working with children with special needs? Since when are social workers and writing aides qualified to act as if they were psychologists?

Since when are social workers and aides allowed to assume and provide personal opinion to children knowing the impact it will have on them?

When our very distressed son, told us right there at the office what he was told and we simply and very respectfully, asked the social worker and the aide about it, the writing aide became very loud and agitated and started shouting at my husband while moving his body in a threatening way like if he wanted to be physical. We couldn’t believe it. All of this while a big sign outside the office reads “Treat others like you would like to be treated”.

Yes, all of this happening at the Child Guidance North Clinic and just because a question was asked in a very respectful manner. At that point, we just walked out of the office. We did not go there to be verbally abused. We went there to get assistance for our son and we left without it.

In the very end, they clearly stated that they will have a conference and choose IF they want to see our children again to get help. Since when do you go to a public health facility to receive assistance and they tell you that they will contact you IF they want to see you? I don’t know who is running this clinic, but it certainly looks like it is Mickey Mouse.

I want to urgently plead to the Minister of Health, Mr. Terrence Deyalsingh to please address this matter in the shortest time possible and proper action can be taken so special needs parents do not have to endure the horrific and traumatizing experience my family and I had to go through at that clinic.

Maria Borde
President of the Autism Parents Association of Trinidad & Tobago (APATT).
TTAutism.com

Dear Honourable Prime Minister Dr. Keith Rowley,

I am writing you this letter with a hand in my heart, hoping I could reach out to you – not only as the Prime Minister of Trinidad & Tobago but also as a father and grandfather.

I am the dedicated mother of 3 boys on the autism spectrum and a fierce activist. I also represent hundreds of families affected by autism locally as the President of the Autism Parents Association of Trinidad & Tobago (APATT).

You see, this is not the first time I’ve written an open letter to a Prime Minister. Almost a year ago, I wrote one to Mrs. Kamla-Persad Bissessar but to date, nothing has been done. Will this letter also fall in deaf ears? Meetings to keep parents happy with promises but no serious outcome? With all due respect Mr. Prime Minister, how much do you really care (By actions and not words) for children with special needs in our nation? Please, show me.

We know how things operate in Trinidad & Tobago. People, including politicians, have a seven- day memory. Every time a shocking act takes place in our nation, everyone expresses disbelief, anger, even embarrassment and promises are made to deal with the matter immediately.

Meetings are held, media is even called and at the end, nothing is done to address the issue. How long do children with autism have to wait Dr. Keith Rowley? A month? Six months? Two years? Ten years? Let me tell you, they have been waiting for fifty-four years from the time Trinidad and Tobago gained independence. Seven Prime Ministers from different political parties preceded you and none of them did anything to seriously address this matter.

Just recently in November, all matters related to children with special needs were moved from the Ministry of Social Development to your office. I had the opportunity to graciously meet Mrs. Webster-Roy some months ago but no updates have been provided as yet. I would like to believe the move is due to the fact that this is an issue close to your heart and you would like to ensure that these children are giving the resources and tools that they urgently need in order to have a chance in life.

Will you help them accomplish this by ensuring your government fulfills its responsibility and duty of guarding and caring for the most vulnerable citizens of our society, our special needs children? Having a little party here and there to cheer them up is nice but when the substantial and critical issues that could help them in life are neglected or ignored the parties and celebrations become nothing but a facade. Autism is certainly not a facade; autism is a serious development disorder that affects entire families.

Every parent dreams for a healthy child. Every parent wishes to provide their children with everything they can possibly need. Dr. Rowley your own children enjoyed the benefits of receiving a proper education with qualified teachers just like thousands of children receive every single day.

Why are children with autism denied this opportunity? Do you know that Trinidad & Tobago does not have public and free schools (With qualified teachers) that can cater exclusively for them? Do you know a lot of our children are spending their days looking at the four walls at home because they have no school to go to?

Do you know a lot of our parents have no choice but to take their children to work because they are unable to pay the exorbitant fees of private education with unqualified staff? Figures between 10,000TT to $22,000TT per term?

Funding private organizations, schools or NGO’s does nothing to address the issue. The funds never reach the parents and if they do, they do so in a very small scale. Autism is not about organizations and funding, that needs to stop. Autism is about individuals and families affected by the condition and the commitment of a caring Prime Minister and Government who can directly help them by providing these schools through the state.

Autism is a neurological challenge therefore children with autism need their own school where they can be exposed to therapy, learn to self-regulate, be taught social skills, etc. Lumping students with different challenges and calling it a “Special Needs School” is not the way to go.

There are hundreds of community centers around the country where small classes could be held during the week for these children and utilize the services of the hundreds of special needs teachers that are currently in the educational system but that they are not being given the opportunity to work with special needs students.

Hon. Prime Minister, will you urgently address this issue and ensure our children are provided with a proper education? If you do not plan to address it urgently : Will you be able to sleep comfortably at night knowing that their future is in your hands and every day that passes you are depriving them of their innate rights that can help them succeed in life?

Honourable Prime Minister, these children will soon become adults. Will they be roaming the streets when the parents are no longer with them? Will they become the future vagrants in Port of Spain or San Fernando? Will they become the perfect victims for the criminal elements in our society? Will they become the unemployed, the depressed, and the suicidal? ALL of this because they are being denied their right to an education? Can you live with that?

I am not asking for a handout or favors. I am asking that my children’s rights to education be respected immediately. Every day that passes and two of my children are home instead of being in a proper school, it’s a day that I mourn. A day that is lost. I cannot turn back time. I’m terrified of the day that my husband and I will no longer be with them. Unless you are in my shoes, you have no idea how that feels. I am pleading with you, from a parent to parent, that you can urgently address this issue.

I am asking you, Dr. Keith Rowley, that you become the First Prime Minister in Trinidad & Tobago to open the first school for children with autism in our country. Autism does not know of recessions or oil prices.

Autism does not know of tax or politics. Autism knows of low, medium and high-functioning, delayed speech developments or lack of speech, cognitive and social impairment, sensory overload meltdowns, cognitive related issues, aggression and self-injury between others. Autism also knows of visual thinking, artistry, rote memory, special interests, and advanced computer skills in some cases that could help these children learn and succeed.

The ball is on your court Dr. Rowley and our children’s future is in your hands.

Maria Borde
President of the Autism Parents Association of Trinidad & Tobago (APATT)
TTAutism.com

Image from government website: TTParliament.org

When I was a young girl, I remember watching the story of a lady in Argentina who opened the doors of her house (And heart) to feed homeless children in desperate need of help. She provided them with a hot plate of homemade food and a place where they could feel loved and cared for.

All the ingredients for the meals she prepared were donated by good Samaritans. This wonderful lady would go around businesses, knock their doors and pretty much beg for them to donate some items to help these children.

One day, she was planning to make spaghetti and tomato sauce for them. She talked to a business owner who donated the spaghetti and the sauce for the meal, she was indeed very grateful for such generous offer and proceed to go to other businesses to ask if they could donate cheese. The reply was astonishing.

They asked her: “Isn’t that you said you are making spaguetti and sauce for them?” “Why do they need the cheese though?” “Isn’t enough that they get the spaguetti?” “Cheese is a want, not a need!” “Shouldn’t they be grateful they have a plate of food to eat?” All these comments and questions, just because this very compassionate lady who was also homeless herself as a child, wanted better for these children. A little cheese on top of their spaghetti. Just a little cheese.

As a mom of 3 boys with autism and a fierce activist, from time to time I observe a similar underline sentiment: “Should we just be grateful that…?” with regards to autism resources locally. Let me list the things I propose we should be grateful for and let me know how it sounds to you, ok?

1. We should just be grateful that our children are part of the 72 million children in the world of primary education age who are not in school. You read that? We are part of a worldwide statistic! There are no public and free schools with qualified teachers for children with autism in T&T.

2. We should just be grateful that there are some schools. And yes, I know there are teachers who are not even registered teachers (Let alone qualified special needs teachers), principals who beat children when they are unable to cope with their sensory-related issues, schools that have children with autism in a day-care facility without proper engagement or progress, but I know there are no perfect schools! Just pay your fee, you don’t have many alternatives. We should just be grateful there are at least people willing to teach them!

3. We should just be grateful for the crumbs that are being thrown to us. So in that same note, I apologize deeply in advance that I am seeking public and free schools for our children. I am very sorry that we are not wealthy enough and we are unable to pay 5 figure fees of private education with unqualified staff. I’m sorry that I want my children to enjoy the same rights of neuro-typical children. Will you forgive me? I know! The nerve of expecting qualified personnel to teach our children with autism is plainly absurd and out of place.

4. We should just be grateful that there are funds to build a hotel in St. Clair but not enough funds to create a proper school that can cater for their needs. Enough funds for fireworks during celebrations, but not funds to provide free therapy for the children.

5. We should just be grateful that our children have to wait at least a year to see a qualified doctor in a public hospital. I know, it could be worse!

Sarcasm aside, I have zero tolerance for anyone who believes I have no right to want better for my boys and for every child and adult with autism in T&T. So no, I am not grateful about the resources being provided for the families affected by autism locally and I will certainly not remain quiet about it. I will continue meeting people, I will continue knocking doors, I will inform and make parents aware, and I will demand what is rightfully theirs.

Why? Because it is morally right. Because our children are not less. Because they deserve to have the tools that will help them to succeed in life. Autism is NOT about organizations, or how much funding they get or should get or why they didn’t get, or private schools, or therapists or doctors. No. Autism is about individuals and families affected by the condition.

When will we learn to FOCUS on them and stop highlighting the rest?

The dictionary defines optimism as the “hopefulness and confidence about the future or the successful outcome of something”.

I believe I am an optimist, because I do believe as a mother that my children WILL lead independent and successful lives in the future despite their many challenges and struggles with Autism. We work together every single day for this to be accomplished.

Having said all of that, between my starting point of optimism and my final destination, there is a road I must travel along with my family. Most of the time that road is very bumpy, full of unexpected holes and cracks that we have to cross or avoid. It is very hard, we do not have GPS in our imaginary van, so we must use our own intuition and knowledge as parents of 3 boys on the spectrum to ensure our children’s trip isn’t too jerky or uncomfortable for them.

Sometimes after many years, months, days and hours of traveling, we find ourselves suddenly in the wrong road and we have no choice but take a few miles backwards and return back to this road to continue our voyage. Let me tell you, we have fallen down a few cliffs in the process in more than one occasion but luckily for us, we were able to put ourselves together quickly and continue on this journey because we haven’t reach our final destination just yet, as a matter of fact even though it has been 15 years, we are just starting the trip and this is the only road we are allowed to travel. There are no shortcuts.

Our boys are in the back of our van. Our oldest becoming more and more aware of all the things he is experiencing but our two youngest do not really know what is going on.

After being on the road for the past 15 years, we are beyond exhausted. I make no apology for it.

Do we feel the beautiful breeze hitting on our faces during this trip sometimes? Absolutely. We see gorgeous trees, a few multi-colored birds that delight us with their singing on occasion and even see a few lavender fields. All these things are little healing balms throughout our constant and unchanging journey. BUT, let’s hold on right there for just a second…

When you are experiencing the trip for more than a decade and I am not talking about if you are reading about the trip, if you work with people that experiences the trip, if you studied in college about the trip, if your aunt-cousin-friend of a friend went to the trip… no, I am talking about if *you* experience the trip every day, with not just one beautiful child but three is a different story altogether.

Now, don’t take me wrong. Does that mean we fail to see the little pieces of goodness here and there during our trip? No, of course not. We enjoy them, we appreciate them, we need them and we cherish them. Having said that and to be completely honest, I am usually stupefied when those who are not traveling the road or their own road is perhaps a little easier or they are just mere distant observers, want us, parents like me, to talk about our trip experience ONLY like if you are narrating a Disney story in Candyland where everything is good, nice, positive and where the Fairy-Godmother comes and grants you 3 wishes and solves all the problems of your trip.

Well, sorry to break it down to you. The trip isn’t Candyland and this isn’t a Disney story and we definitely don’t have a Fairy-Godmother. Maybe there are people who are uncomfortable to hear about the reality of the trip and they rather us to be plugged-in Matrix style and pretend everything is ice-cream and M&M’s. I refuse to fall in that trap. For people to know the reality of the trip and become helpers on this journey you must show them the truth, you must let them see how the trip is like in real life and not try to paint them something that it does not exist for all families on the spectrum.

My children are part of the trip but they are not THE trip and they will never be THE trip, they are innocent travelers who were placed on this road along with their family for some reason unknown to us all and they try their very best even in the middle or their own unawareness. Let us and let them (Without expectations or limitations) share our feelings, emotions and thoughts about the trip. The good, the bad and the ugly.

You see, observing the progress of these 3 little handsome boys behind my imaginary van makes me think that destination is perhaps not so far away or completely unreachable. And yes, I have my own fears and doubts just like you do but as soon as they enter my head, I try to shake them off quickly; I must not lose focus while on the trip.

The road hasn’t finished, I am still very exhausted but I am their driver and they are my favorite passengers. This trip is my entire life’s mission, there is no other goal that entertains my every thought, nothing could ever be compared to what it means to me to be able to reach destination with them.

So here I am, blogging from the road and driving.. Until those 3 boys reach safely.

For the past few months I have developed a bad case of insomnia, my body could literally be exhausted to the point of seeing a bed and cry but my brain has been telling my body that it isn’t time to sleep but it is time to worry and boy, no amount of food, peppermint infusion or chamomile helps. It has been tough.

David Carradine, you know the guy from the old show Kung Fu? He said once: “Worry is a useless emotion”. My oldest son argues and says that even though worry can be a useless emotion, worry can also move you to action (Isn’t he smart!?) I have been worried (Well, I never really stopped) about my boys. It is so hard to explain with words the feeling of frustration when you would like to see things changing in the right direction for their benefit and you seem to be fighting against a wall over and over and over again. You see, children with Autism don’t grow into neuro-typical adults, no. Children with Autism grow into Adults with Autism no matter how high-functioning they might be.

I realized that even though there are a lot of things that can be done to help children and adults with Autism in Trinidad and Tobago, the kind of resources needed to make an enormous difference can only come through the government because they possess the financial resources to make things like that happen and of course, because it is also *their* job and *their* responsibility. Now wait, I am talking about REAL and MEANINGFUL changes, I am not talking about gathering our kids once a week to eat a pizza and a soft drink and pat ourselves thinking how great we are doing. No, I am talking about things that could change LIVES.

Can you imagine if every child or adult on the Autism spectrum can receive free therapy in our country? Can you imagine as a parent being the beneficiary of respite services so you can go out and eat a little ice-cream with a friend and renew your batteries while your child is being supervised by a qualified aide? Can you imagine seeing businesses, companies, professionals in our neuro-typical society willing to hire individuals on the Autism spectrum?
Can you imagine a public school catering for the needs of children with Autism with qualified teachers? Can you imagine every child on the spectrum having a school aide if they attend mainstream schools?

This is why I decided to start the Autism Parents Association of Trinidad & Tobago (APATT) I know you may wonder: Why create a new organization when there are a few ones already in existence? Because every organization has a part to play and yet, each one has a different vision and different goals they would like to accomplish. Things in Trinidad & Tobago tend to be generalized or ignored completely and when something is offered it is done in a way that really only organizations and privateers benefit. We need help for our children now, what we do as parents must help our children today. Help them as individuals, as human beings.

I have a dream with APATT and as John Lennon says : “You may say I’m a dreamer but I am not the only one”. This isn’t about me; this isn’t about a million pictures and meetings or useless balloons or blue lights during the month of April, like if balloons or lights HELP our children somehow and like if Autism only affects them 30 days out of the 365 days of the year.

No, this is about pushing for the SERIOUS issues that affects their everyday LIVES and ours as well. We are not asking for favors, we are not asking for pity or a handout…Oh no, let’s make that very clear. We are asking for what OUR children rightfully *deserve*. Autism Parents are fighters, we have many tigers and tigresses among our midst, it is not time now to sit still or just give up and think that nothing can ever change. No! CHANGE comes after much struggle; it has been recorded in history and is up to *us* now to write our own and seek the changes we want for our children.

Do these things matter to you? I am confident that they do. Do you believe in change? Let’s stop waiting on something to happen and make it happen. We are parents of children on the Autism spectrum – our voice must be heard now!

Register FREE with APATT!

“How yuh rude so!”: So you ask your Aspie co-worker if she thinks you got fat during the holidays and she bluntly and without much anesthesia said, “Yes”? I know it is hard to understand but Aspies are not rude, they are factual and if you indeed put on weight during the holidays they WILL tell you the truth – if you ask them! Having said that, they do not have the intention of hurting you or being rude or disrespectful but they have a strong sense of honesty so if you are not looking for a sincere answer to your question, then please do not bother asking an Aspie. Trust me on this one. Now, this does not mean Aspies do not lie but they do lie less so if they ever compliment you, it is because they really like you.

“How the chile bawling down the place so? Steups He spoiled!”: So you are shopping at Massy when you observe this mom with a child in the cereal alley. She seems to be looking for an item desperately and you observe that her son seems to be getting agitated rather quickly….

Then suddenly, he starts shouting and screaming on top of his lungs because his favorite cereal is out of stock. You can hear him shouting “Cereal! Cereal! Cereal! I want my cereallll!”. Of course, you automatically assume that the child is a spoiled brat and just wants his way no matter what! But things do not end there, they start escalating and you are just in disbelief about how this mother is handling the situation! She is very calm while trying to control a child who is hitting, biting and screaming.

Yes, quietly. The nerve! And you think: “But what the jail is this? Give him a lash or two nowww and let him know who is in charge woman! “. You shake your head in disbelief and think: “What a poor excuse of a mother!”

What you do not know, is that you just witnessed a child with autism having a meltdown. What you do not know is that it is not about the cereal. What do you not know is that children with autism find safety in sameness so when there are sudden, unexpected changes, they are unable to cope. What you do not know is that this cereal is perhaps the only food this child is willing to eat. What you do not know is that this mom is doing an spectacular job trying to remain calm in the most difficult and challenging of situations. Do not assume a child is spoiled or pampered just because of a limited, rare encounter. There is always more to the story.

“She dotish or wha? Those girls were just bullying she and she forgives them so?”: I know a mom living abroad who has a daughter with autism who is constantly bullied in school by her peers. One day, her daughter came to her and told her: “Mom, do you know why I forgive them? Because I love them”. Aspies might not be very good at expressing physical or verbal affection (Of course, every child is different) but it does not mean they do not possess the capability to love and desire to be loved. They do not hold grudges. They are forgiving and accepting of people’s differences and they can be amazing and loyal friends. Encourage your child to befriend a child on the spectrum.

“Why come to a party if you are anti-social?”: One of the most misunderstood things in Asperger’s is to think that Aspies are anti-social. This is not true. Just because they struggle with social communication and they don’t seem to know how to make friends, it does not mean they do not want friends. Just because you approach them and they seem rather quiet, they do not make eye contact with you and they seem awfully uncomfortable, it does not mean they want you to go away. They just need help in knowing how to interact with you. Do not quit on them, just stick around and talk. You will be amazed at how much knowledge they have and how much you can learn from them. You can also take the time to find out their interests and ask genuine questions about it and you will see how open they can become and how excited they will be answering your questions.

Aspies think outside the box, they are great leaders and independent thinkers. They do not do things just because everyone else is doing it. They possess above average intelligence and they never hurt someone purposely. Most importantly, just because they can speak (Unlike non-verbal individuals on the spectrum) does not mean they have it “Easy” As sometimes people seem to imply when they are compared to low-functioning individuals.

They need a lot of support and understanding. Since Aspies are very aware of their condition, they can be very hard on themselves when they do something they consider wrong or when things just do not work out (When trying to make friends for instance) and they can become very depressed and sad about these things.

My message to you today is that there is always more than meets the eye when you are the mere observant of a situation or you have very limited information. Before you assume, try asking. Having Aspergers is NOT a death sentence, it is a different journey but rest assured:

Asperger’s worked for Albert Einstein.

Asperger’s worked for Temple Grandin.

Asperger’s worked for Susan Boyle.

Asperger’s worked for Daryl Hannah.

Asperger’s WILL work for your child/relative/neighbor/friend/co-worker once they have YOUR support, YOUR understanding, YOUR patience and YOUR love.

Please, do not ever quit on an Aspie because they will never quit on you.

*Aspie: Affectionate term to describe someone with Asperger’s Syndrome, which is the highest functioning form of autism.

Disclaimer: I know that many of you, wonderful people, support parents of special needs children. You do it through your kind generosity, words of encouragement, smiles and consideration and I am very grateful. The following letter is not meant for you.

Dear Stranger,
I wanted to write you this letter to express a few things that I think you should know, with the hope that you might understand (Perhaps just a tiny bit) the kind of life that parents with children with autism live every day and the impact (Positive and negative) that you might have in our lives.

Sometimes you see me at the grocery store and you stare at my 8 year old boy who seems strangely anxious to you, I can tell that you want to say something. Sometimes you see me at a fast food restaurant trying to calm down my youngest son who is overwhelmed by sounds and people as he is unable to stay still.

In that very crucial moment when I cannot think about anything else but help my boy who is having an autistic meltdown, you feel the need to say something. You talk about “spoiling” my children; you talk about “pampering” them and of course, the classic: “They need licks to straighten them out one time”. Even after I tell you that they have autism and you claim to know what it is, your unsolicited advice does not change.

Sometimes you even tell me that you do not have any children on the spectrum but that you know a few parents who do and apparently that makes you an autism expert. Sorry but “knowing” a few children with autism and living it 24/7 are two different things. Unless you personally have a child on the autism spectrum (And not just a friend or relative) then you really do not know what is like -plain and simple.

Now, don’t misunderstand me I do get you, you believe in the concept of “it takes a village to raise a child” to rationalize your assumptions about my children, but you see, the villagers do not understand autism and I am not asking you to be an adoptive or extended parent for my own children.

You have to understand that during the times that you seem to believe that you are Ms. Or Mr. Parent of the Year and have the need to tell a complete stranger how they should raise their own children, I had probably 3 or 4 hours of sleep (If that much).

Certainly not because I was out the night before partying with friends but because for the past 15 years, I have been dealing with something so absurdly wearying, demanding and overwhelming called, “AUTISM”. So I’m sorry if I get extremely exasperated when I have to hear the fetid pile of garbage that sometimes you throw my way for no reason. I certainly do not deserve it.

I am very proud to tell you without any shame that I dedicate MY ENTIRE LIFE to my children and I work extremely hard in order to help them develop their talents and reach their full potential. But you cannot see that.

You do not see my sleepless nights, my struggles in trying to find a school where there are qualified teachers who can help my boys, my constant research in trying to find caring therapists who do not see me or my kids as “an appointment for $1,000 in fees” but those who truly dedicate their lives to help special needs children (And I know there are out there) without being so greedy and hardhearted that they are not ashamed to ask for preposterous prices under the mantle of “caring for autism”.

You do not see my many tears of overwhelming emotions after a very long and stressful day and the hurt knowing that sometimes doing my very best isn’t enough when you see your children struggling to achieve things that most people take for granted, especially in a country that offers very little resources.

If there is something I deserve along with every parent of a special needs child is nothing but support, kindness, encouragement, help and understanding. And if you cannot or wish not to provide any of these things, it is better to remain quiet. Believe it or not, as much as I try to understand you and try hard not to judge your intention, there are days I just cannot deal with it. And no, you do not have to keep repeating what you said to me. I heard you perfectly fine the first time. I am just purposely ignoring you.

You do not know this but I heard it all. People comparing the seriousness of my situation with the seriousness of someone trying to remodel a living room (Nope, I am not making it up it happened not too long ago) or people telling me while looking at my eyes that my situation is NOT going to change so they cannot see how they could help me (Yes, this also happened not too long ago) oh and by the way, thank you very much for reminding me that I will probably deal with extreme stress for the rest of my life.

What’s the purpose of saying things such as these if not to hurt or demean others? Is it that when we see someone down instead of offering a hand to lift them up and try to make their lives easier to cope with, we believe we should kick them hard while they are down? How you make others feel says a lot about you. How you make a parent of a special needs child feel says even more.

You might think and say that my children are loud, rude, noisy and inconsiderate but they are not, they have autism. What is your excuse for the same behavior?

I know well that you do not know what is like to live my life but you know what? It does not stop you from being a little thoughtful towards others. It does not stop you from showing some mercy, compassion and understanding.
Bernard Beltzer said once: “Before you speak ask yourself if what you are going to say is true, is kind, is necessary, is helpful. If the answer is no, maybe what you are about to say should be left unsaid.”

They say the tongue has no bones, but is strong enough to break a heart. How many hearts have your tongue broke? How many hearts have your tongue uplifted? It is not too late.

Sincerely,
Exhausted Mom of 3 children with autism

As parents, we all understand too well the rewards and challenges that come with parenthood. But what happens when your child does not reach the expected milestones? Anxiety starts building up and most of the time; a well-intentioned family member tries to subdue your disquietude by saying that you just need to “wait” and that your son or daughter is going to be “fine”.

Even though, in a lot of cases it is true and the child ends up catching up eventually, it does not always turn out that way so I decided to create this post for parents who might be traveling that road of uncertainty and they do not know what to do or what resources are available to them.

How do I know if I have to seek professional help for my child or just wait?

Often times, I get emails or questions such as: “My child is three years old and he does not speak at all. Do you think he is autistic?” or “My daughter speaks very few words and she is almost two years old and does not make any eye contact, do you think she might be autistic?”. It is very hard to answer questions such as these.

First of all, I am not a medical doctor so my suggestions are not meant to be taken as medical advice but simply the suggestions of a mother of 3 children with autism who went through the process. What does your instinct tells you? If you have any concerns about the development of your child, you should seek the professional advice of a medical doctor immediately. Please do not delay, time is crucial particularly with regards to children under the autism spectrum.

If you suspect that your child might be autistic, have any other neurological condition or special needs this is the procedure and the resources available to you in Trinidad and Tobago:

1. Getting your child assessed and diagnosed

Public Sector: You will need a letter of referral from your family medical practitioner stating the concerns he/she has with regards to the development of your child. You will have to take this letter to Mt. Hope’s Children’s Hospital, go through the usual registration process where your child meets with one of the pediatricians there and they provide you with a letter to give to the intake officers at the Child Guidance Clinic within Mt. Hope. You will be given then an appointment and expect it to be in one year’s time.

When you go to Mt. Hope, you will be asked in detail about your family medical history and feedback with regards to your concerns about your son or daughter. If you are lucky, one of the developmental pediatricians might see you and your child and might provide some feedback. No formal diagnose will be done at this point of time. Expect that several appointments will take place before they attempt to offer a formal diagnosis on your child. Even so it is likely that they will refer you elsewhere to get an assessment done. This is where you will have to spend your own money and lots of it because they are very expensive.

Continuing with Mt. Hope, you will be there for long hours so make sure to plan ahead such as taking things to entertain your child so he/she does not become frustrated. Keep in mind that an assessment is different than a diagnosis. A formal diagnosis is done only by a qualified medical doctor. Assessments are done by someone holding at least a Master’s degree but they are unable to provide you with a formal diagnosis.

Private Sector: If you are able to afford it, you can contact a qualified psychologist willing to assess your child. Keep in mind that the cost of this assessment varies according to the professional. Just be prepared to spend thousands of dollars. And one word of caution: Research, research and research about the professional. There are quite a few in Trinidad and Tobago who diagnose/assess children but they are not qualified to do so and they shouldn’t be doing it. You can check the following link to read the reviews of available professionals who can do assessments. These reviews are written by parents and clients themselves:

Source 8z

2. Got an assessment or diagnose, now what?

Congratulations in getting your child assessed or diagnosed. This step is vital in the process of getting your son/daughter the help they might need. Once your child has been formally diagnosed or assessed it is very important that you can share this information with the school’s Principal and teachers (If your child goes to school) so arrangements can be made if necessary.

If your child is in need of an aide in the classroom, you need to contact Student Support Services at the Ministry of Education. They are supposed to provide aides for every single child with Special Needs in the country that needs one but the reality is very different. Do not expect miracles or quick action. Expect that they might not provide you with an aide and that *you* will have to be the one searching for one and hope the SSS moves fast enough to get it approved.

If you are unable to find a school that can cater for your special need’s child, then you might be interested in reading this:

Source 1o

3. Therapy

Now that your child has been formally assessed or diagnosed, a serious report should have recommendations as to what is needed to help your son/daughter. It might be speech or behavioral therapy, occupational therapy, counseling or group therapy between others.

As much as we would like to have free access to all these therapies in the public sector, the reality is that you will have to pay privately for these services, so expect to pay a few hundreds dollars for speech therapy (And their sessions lasting 30 minutes long).

There is a couple of Non-Profit Organizations linked to Autism for example, who might offer two hours a week of therapy in one day (Take into consideration that every week, the exercises they give to the children are going to be almost identical so this might or might not be for you). Keep in mind also that children with autism need between 20 to 40 hours a week of therapy.

Make sure to search and research the qualifications of the therapists that will work with your child. You need to ensure first of all that they are qualified to work with children with special needs and that most importantly; they are there to help your son/daughter reach their full potential rather than seeing them as a number or a fee to be paid.

4. Parental Support

There are hundreds of online resources and sites to help you get the kind of support that you need at this time. Locally, there are a couple of Non-Profit Organizations that label themselves as Parental Support Organizations but I’m unsure as to how exactly they see themselves accomplishing this.

You can also hook-up with other parents online who might be going through similar challenges, it is important to stay connected since we know we tend to live isolated lives because of our circumstances.

5. Know that you are doing your VERY best

Your child has been assessed and diagnosed, and all because of *you*! If money isn’t an issue, he/she is probably also receiving therapy on a weekly basis and you are meeting with a parental support group to help you cope.

If money is an issue, you are probably still waiting for an appointment or perhaps you went through a few already and even got your child formally assessed. You are now wondering about budgeting and how you will be able to pay for the therapies that your child needs. You will realize that it is unlikely that you will be able to pay for ALL of it so you will have to pick and choose according to the immediate needs.

You are doing the VERY best you can based on the circumstances life has given you and you should feel proud of yourself and your accomplishments. You are doing an excellent job even though it seems like your hard work is not seen or recognized.

Don’t forget, you need time for yourself. A parent who take care of herself/himself is a parent who can better care for their child. I know what you will tell me: I do not have time for myself! Trust me, I know. But even if you take five minutes, just use those five minutes for YOURSELF and try to recharge some batteries. Your child will thank you for it.

The journey continues and none of us know where will exactly leads us. But we must do everything in our power to help our children reach their full potential. So, Mom…Dad….no matter what people around you say about your child, just remember:

They can learn
They can excel
They can accomplish

Believe in your child.

According to the UN Convention on the rights of the child, a fundamental right for ALL children regardless of their background is making education accessible to them. Educational instruction must also be of good quality as well as gratuitous so impoverished families can also benefit.

The Honourable Prime Minister Kamla Persad-Bissessar recently said during the Paramin R.C. Primary School Opening: “Education is the single most important element that secures our ability to continue and progress…We will not rest until every child in Trinidad and Tobago has the quality education they deserve.”

How is this universal right being fulfilled with regards to children with autism? What is the government doing to ensure they fulfill this VERY important and VITAL responsibility?

You see, we do not live in a country where you can simply open a phone book and see a list of special needs schools and automatically know they have caring teachers with the right qualifications through a degree in special education and of course, the experience, to teach your autistic child. The reality is far worse… it is more like a trial and error experiment in a mad-scientist’s laboratory and your children are the guinea pigs – and to boot, you must pay for it.

It is so bad that you are forced to choose between the least of the evils and you even start unconsciously justifying the way they run their operations compared to other special needs schools you have visited.

“They are not sooo bad. At least they just slap the children and they do not beat them hard”.

“They are not sooo bad. Yes, teachers do not have the right qualifications but at least the Principal does”.

“They are not sooo bad. They charge $10,000TT a term. The other schools charge $16,000TT a term!”.

“They are not sooo bad. No school is perfect… at least my child gets some time away from home”.

And the list goes on.

For parents with children under the autism spectrum and let’s face it, parents of any other special needs children in general, finding a school that can properly cater for their needs in Trinidad and Tobago is like trying to find a needle in a haystack. They tend to say their teachers are qualified, but having a Bachelor’s degree does not make you qualified to teach special needs students. Being the Principal of a school and having the right qualifications while the teachers do not possess the same, does not qualify the school or the teachers. The people working with special needs students must possess a degree in special education or have a post-graduate certification in special education to be qualified.

In the US taking California as an example, someone who possesses a Bachelor’s degree in any subject area must enter an accredited teacher preparation program or credential program with an emphasis in special education to qualify as a special needs teacher. For a clear credential, educators must also complete an Approved Special Education Induction Program as well as meet other requirements. Source 3

Is it that we think because this is Trinidad and Tobago our children do not deserve qualified teachers? Is it because this is Trinidad and Tobago we must accept the mediocrity that wants to be imposed to us while we pay for these “Services”?

I hear there are no places in Trinidad where someone can study to become a special needs educator. The University of Trinidad and Tobago offers a Bachelor’s degree in education with one of the programs having the choice of specialization in special education Source 5. CREDI also offers a Bachelor’s degree In Special Education along with a workshop with current issues such as dyslexia, autism and physical handicaps Source 1.

In the University of the Southern Caribbean a person could obtain a Bachelor’s degree and then obtain a Master of Arts in Educational Psychology with emphasis in Special Education Source 8 .The options are out there. Do not allow others to convince you otherwise.

As a matter of fact, according to Davanand Sinanan, President of the Trinidad and Tobago Unified Teachers Association (TTUTA) there are teachers who graduate from the University of Trinidad and Tobago (UTT) with Bachelor’s degrees in education (BEd) who specialize in children with special needs, but these teachers are absorbed into the regular school system and are not given the chance to work with children they are trained to help simply because the government has not created yet the post of “Special Needs Teacher”. What are they waiting for to create that post? Source 8. There are hundreds of qualified special needs educators who are anxiously waiting to work with special needs students and they are not giving that opportunity. Source 4

Let’s face it, a lot of these special needs schools are actually day-care services, mostly because the persons who are supposed to teach your children are untrained, they do not know exactly what to do so they sit with your child to build a puzzle, they sing a few songs during circle time and they color together like they do with your neuro-typical children. But when your child is perhaps in the lower functioning part of the spectrum, how do these untrained teachers handle the situation when they have a meltdown and they are screaming, kicking and biting?

When their sensory issues are all over the place, do they know exactly what to do? When intensive intervention is desperately needed, these schools just simply don’t cut it unless we think that leaving a non-verbal child sitting down for hours doing every day the same activities without challenging them because nobody believes that they can do more…or left unengaged or stimulated in any way is some sort of unknown-recent therapy that I am not aware of. Nope, a little song here and there and a slice of pizza with a chubby to keep them quiet does not count.

As we know, the spectrum is very wide that even though a lot of our children can perhaps function well in a mainstream school with the help of a qualified aide, getting THAT qualified aide in the first place with the help of the government it is like starring as Tom Cruise in one of those Mission Impossible movies.

Mind you, these aides are only for those children in the higher-functioning end of the spectrum, the rest cannot even make it to mainstream schools. But the government spends billions funding FREE education for neuro-typical children from Pre-school level up to University educational-level and yet the often forgotten children under the autism spectrum do not even have a public school they can attend. But the promises over the years and the meetings about special needs education certainly do not stop coming.

Is it an unreasonable request that the government fulfill its responsibility to take care of ALL their citizens? Is it an unreasonable request to expect that every special needs child in the country can have a qualified teacher and aide to help him/her reach their full potential? Is it an unreasonable request to expect the government to build the first public school for children under the autism spectrum? Who is going to stand for what is right instead of just giving up and do nothing, thinking that no change could ever come?

I do not believe ANY of these things are unreasonable requests. But let me tell you what the unreasonable requests are:

1. Expecting parents to pay unreasonable fees for unqualified educational centers or intervention programs because they know that parents have very few options IF any.

2. Expecting parents to send their children to mainstream schools without the help of a qualified aide and subject the child to higher level of stress and anxiety when they are unable to cope.

3. Expecting parents to choose between any of these places and turn a blind-eye to the many issues they have.

4. Expecting parents to send their children to unqualified therapists or in trainee therapists who pass themselves as qualified, taking full advantage of parents who might not be very familiar with the proper terms and qualifications. As an example, to become an ABA therapist and START the process of certification, a person must possess at least a Master’s Degree in behavior analysis or other natural science, education, human services, engineering, medicine or a field related to behavior analysis AND approved by the BACB (Behavioral Analyst Certification Board). Source 6 Also new changes have been in effect since January 1, 2015 Source 8

5. Expecting parents to pay to Non-Profit organizations (Oh the irony!) and charitable entities (Double irony!) for private/individual therapies for their children.

And last but not least: Expect parents to accept ALL of the above, to be grateful and stay quiet. *This* parent certainly will not. My advocacy for children under the autism spectrum has just begun.

Mother’s day is a day filled with bitter-sweet emotions and memories for me. Raising 3 children under the autism spectrum has been more than a journey; it has been definitely life changing.

Today someone posted in a popular Facebook page for moms: “Describe motherhood in three words”. Answers varied from: “Love, joy and happiness” to “Tiring, Hard & Rewarding”. I took a few minutes to digest those answers and think about my own life and how I would describe motherhood in three words.

I don’t think any amount of training or knowledge or preparation would have helped me for this task ahead and to be perfectly honest, most of the time it is about making it to the next day alive and half-sane. Other days, it is about making it to the next hour alive and half-sane…

You see, my boys do not understand when I am trying to help them or protect them from danger. They see it as someone trying to stop them from doing something they really want to do but because they are unable to process the consequences of such actions, they do not understand that all I am trying to do is protect them. So in a few fists of anger and meltdowns, they can push, kick, and even bite.

It is very easy to love someone who loves you back. It is very easy to love someone who is grateful about the help you might be providing them. It is very easy to love someone who can tell you and show you how much they love you and how much you mean to them.

But what happens when the persons you love the most cannot tell you that they love you? What happens when you crave hugs from one of your children who dislike closeness due to sensory-related issues? What happens when you are so exhausted at the end of the day and your own children are unable to read body language that could help them understand why mommy needs rest and a little time for herself?

What happens when you feel that all the hard work you do every day seem to go unnoticed and unappreciated?

And then, you remember this isn’t about you. This isn’t about some Mother of the Year Award either. This is not reality TV. This is LIFE. This is about understanding that you are doing your VERY best under extraordinary circumstances and that you are just simply a human so please… do me a favor and cut yourself some slack during those days when you do not feel that you are a good mom.

We have to continue pressing forward, working for our children… despite the meltdowns, despite the serious challenges, despite the fact that they might never know how much their parents love them and want their best interest.

Isn’t that what love is anyways? Loving someone without expecting anything in return? Loving someone when they are the least lovable? And then HOPE…. HOPE things would turn out okay in the future for them?

Motherhood for me is not a chore and my children are not accessories. Motherhood for me in three words is “Trying my best”. Is it trying my best good enough? I don’t know but it is the only thing I can do and the only thing I have control over.

And the rewards you might ask? The rewards are given to me in the form of a smile or even a hug when that hug does not want to reach me. The rewards may seem scarce, but I know my kids try their very best too and their efforts do not go unnoticed.

It is Mother’s Day and in a few hours, my handsome sons would be up trying to prepare breakfast and bringing it to my bed as a way of honoring me on this special occasion. I will be anxiously waiting for them… And shedding a tear, not because it is Mother’s Day, not because they are bringing me breakfast to bed…but because I made it another day, with them… AND for them.