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.
Wait, the PM have family that autistic and she not doing nothing for others? The granddaughter must be getting the same help you talking bout privately. Anyone in this country with a disability treated like they no matter as if they are not citizens.
You took every word out of my mouth! We can’t continue depending on private organizations. My nephew is at home in front of a computer all day because my sister can’t afford school fees! I didn’t know the PM has an autistic grand-daughter!
Found you through Twitter. What a courageous mother you are! Keep fighting for your kids! Where I live in Alberta, Canada the government provides a lot of help for children with Autism. I was living in another province but I moved to Alberta because of the resources. Hope your plea is heard! Wishing you all the best.
I have a daughter with autism and I fully agree with your letter. Sometimes I’m so depressed that I just feel to give up but my daughter gives me the strength to carry on. I can’t afford to pay therapists and when I contacted one last year she told me that I have to pay $12,000 for an assessment then I contacted one of the private organisations and they just didn’t bother to find out about my story they all want money and donations.
Hi I found out my son is Autistic sometime now, but I was in denial .My son is really bright and he looks like a normal child. Every time I read stories about parent that have kids with autism I cry because of what I am facing. He has a speech delay.
I went to various Ministers for assistance but no no avail,one minister went as far to tell me to have patience because it is my child but how much longer do I have to wait?
He even gave me his secretary’s cell phone number but when you call her phone she sends a message saying “I am in a meeting”. Just imagine schools do not even want to take him.
I love this post so much! Please how can we get Kamla to read it? My son is 2 1/2 and he’s autistic and I can only afford speech therapy once a week no school want him.
I cried reading your letter because you described so perfectly the struggles I go through every day. sad.gif Thank you so much for writing this I only hope Kamla reads it and helps us.
fully endorse your sentiments expressed, however, I would like to plead support for educating for all Special Children. I have advocated to this Administration via the blog and Facebook, the special children plight to have a chance at being given an education at no cost to the parents, just as the “Normal” Children benefit from through Preschool to Tertiary education enjoying the benefits of free education and Gate subsidy.
Personally, I have realised that this Administration do not care. I am the parent of a Cerebral Palsy Child.
Congratulations. Your open letter was well written, well thought out, and will hopefully be well received.
Excellent letter! I fully agree with your approach and I respect you so much. Please continue blogging and advocating for children with autism (Mom of a 3 year old with Aspergers).
Gosh…. Thank you Mountain of Sand. I think you are amazing! This is the first time I am reading your blog, and I am sure I will read through your other writings after this.
I am a mother of a 16year old with some kind of different order. We say for ease that he’s on the ASD spectrum, but we’ve never had him thoroughly assessed for reasons you cited in your blog, still listed and waiting to see the child developmental specialist who used to come to Tobago, where we live, once a week (But many times could not make it due to work overload or other committments).
I don’t know the current situation at the Scarbouough General with regards to this these days, we gave up hope 8yrs ago. We tried to see this specialist privately around that time too, but the cost of traveling to Trinidad, not to mention the doctors fees became too much for our pockets and to what end?
What were the benefits of putting a name to my son’s way of being in the world without greater understanding of how I could help and support him. (My choice to stay at home with him and allow him to learn with us and through life experiences means I don’t have a regular financial income.)
Our story is like that of so many others in our country. We found other ways of supporting ourselves, and we would love the support of our government and other interested people in continuing to do so.
In Tobago I have been blessed with the friendship of a retired school teacher […], who through her passion for life and learning has given her time to creating a space where kids can feel safe, appreciated, respected and loved. Its
Called [….]. It has become a magnet for kids who learn differently. Four of the boys there are on the spectrum; With my support and the support of the other parents its being set up as a non profit org.
And after two years we are finally seeing a way for a regular salary to be paid to [….] for everything she does. Until now money earned covered on rents and other expenses. Our kids at [….] would love to have the benefit of the laptops given to the SEA students, but they will never be in the system.
We are interested in joining the appeal for laptops to be given to our kids as well. Please tell us how we could help with this. I could go on and on…. But really I just want to thank you for your letter to the PM, to wish, on behalf of all our differently abled children and adults and their siblings and relatives and caregivers, that your letter will be read, and heard, and taken to a heart of action.
Thank you, we are blessed to have you and your family in Trinidad and Tobago!
Ps: Had to smile at the simple math security question, if it were my son writing this letter his creative answers would never be accepted by the system…. And sadly we would never hear from him…
This letter echoes my sentiments as well. I am Mother of an autistic daughter and I truly support and appreciate your advocacy for autistic children. Our Government need to take action now Autism is becoming more prevalent today than ever before. Lets all join in advocating for our cause and move the Government into action.
Well done this is so beautifully written and I hope it gets the attention of someone in government! I don’t have an autistic child but my heart goes out to all the parents and I applaud your courage and commitment to your children. God bless.
Two of my children have cerebral palsy and one has autism I have no choice but to stay home to help caring for them I get a little help from family members but I’m tired of begging.We need something proper in place.
Thanks to each one of you for your wonderful comments and for sharing your personal stories and struggles! It means a lot to me. Thank you so much. We are all trying to do the best we can for our children’s sake with the very little resources to our disposal.
Please feel free to share the link to this blog post in your Facebook page and Twitter so it can reach to the PM.
Thank you all!
I found this letter through a friend of mine, well said! We need to be more vocal about important issues! Hope the PM reads your letter. Take care!
What you wrote is what all these NGOs should be putting in the forefront of their ad campaigns.
Even the Newsday had a big ad with the Ministry of Social Welfare saying they support autism awareness. The cost of that ad could have probably given 20 children some needed therapy.
The problem here is priorities but this is not unique to those mother’s plight it is just how politics plays out.
Those who get the most are those who are the loudest. The autism problem in T&T is not loud enough for Ministers to make a change but this is a good place to start.
Recently the minister of education met with principals of special needs schools and talked about implementing new policies to help the children but he talked about 6,000 students being formally assessed and student support services taking over to find out IF these students need further help.
But like the letter says my child is going to school without an aide because I’m fed up of asking for one. Real fed up about begging for my child.
Wonderful letter Maria! I saw this quote from the Prime Minister sometime ago and I wanted to share it with all your readers:
“The effects of ASDs are not restricted to any particular race, colour or class of people. In fact, from my own experiences with autism, I must emphasise the importance of early detection. With the right care, individuals affected by ASDs can lead a full and prosperous life.
My government is determined to introduce sustainable and comprehensive policies and programmes to benefit persons with autism as well as other disabilities.
The time for full inclusion is now; no disability of any kind should be allowed to bar a citizen of Trinidad and Tobago from that which our anthem boasts, an equal place in society.”( Prime Minister Kamla Persad-Bissessar, World Autism Day 2014 )
I fully agree with your letter…. I have a four year old daughter who is autistic…. She does not talk only babbles and does not eat at all…I think the government needs to help these children who can’t afford private treatments…