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:
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:
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.
Thank you, thank you, thank you for this wonderful article! It really helped me with my present situation so I’m very grateful. Keep up the good work, love your blog!
You just described in a nutshell the entire process. Thank you. Hoping things change soon for T&T. I live in Canada and I moved 10 years ago after I couldn’t find any resources for my then 2 year old boy.
I have been reading some of your articles from your blog, and I think your writings of your experience with autism excellently portray what occurs in this country with respect to treating children on the spectrum.
Giving others support, feedback and insight into this disorder, and the reality and obstacles which families face in seeking support for autistic children help to spread awareness and understanding of ASD.
I hope more people take notice of your blog because I genuinely believe you’re making an impact with your honesty.
I am a clinical psychologist at the Child Guidance Clinic in south (I’m not sure if many persons are aware that there is such a clinic in south) and we liaise with Community Paedeatrics in assessing ASD.
Our team shares many of your frustrations with respect to support for ASD diagnoses because of the lack (Or in some cases, the absence) of resources in the public health sector, and sadly we ultimately have to refer to private professionals to get adequate support, which is obviously not ideal because most parents cannot afford these services.
The Ministry of Health though does provide some financial assistance to these families as there is a policy that if the recommended treatment is not available in the public sector, they are willing to fund LIMITED sessions. Unfortunately though, this does take time for individual cases to be approved and is frustrating for parents.
The assessment process is similar to Child Guidance Clinic North but, at least for now, the waiting time is shorter but again, not ideal. Hopefully this will change soon as our psychologists have been trained to diagnose ASD.
Once more, I support your sharing of your experiences and can only see such as having a positive impact. I really hope your articles are more widely read so that ASD awareness can be more promoted and the gaps in the system addressed. If there is any information with which I can assist, I will be more than happy to share.
Sharissa W, I’m very happy that the article helped you with your situation. Wishing you all the best.
JJ, thank you for your kind comment.
Sian, I appreciate your feedback and your kind words towards my blog. Please feel free to post about the services offered at the Clinic in South here:
https://www.bordeglobal.com/foruminv/index.php?act=Trinidad_Autism_ADHD
There are also many threads there with regards to services and Autism in Trinidad. Would appreciate your thoughts. Thank you. 🙂
Great advice! Would like to add that the MOH has put all applications for funding on hold pending review of the “variations in fee structures” in the private sector. Additionally, public sector financial support is based on a means test, which eliminates most families with a monthly income over 6000 TT, I.e. 80-90% of the country. So much for my tax dollars.
Hi I am an ABA therapist that has worked with children on the spectrum for the past 10 years. I have the same passion just as you to change the educational system in trinidad for kids with special needs. I have visited the autism society and donated material to aid the children. I have reached out to many to in trinidad to offer my services to help yet I haven’t had a connection. Please contact me ,We are a team of individual that are willing to change the system please contact me.
Maria, you’re doing such a wonderful job! I don’t have children but I am a therapist living abroad and your posts are exactly what people need to know! I admire your strength and determination. All the best!
Hi thank you for this article. It was very informative. From one parent to another it really is a struggle financially. I plan on doing my Masters in SLP to be able to offer this service in the central area to those that need it. We need more parents to stand up and fight for our kids needs.
I am grateful for your article. I am the proud mother of a little boy on the spectrum. He’s at the age now where we need to get him into a Primary School. I am checking private options as I believe that would be a better fit for him.
I have a question – is getting a diagnosis truly necessary, while I understand that it may be helpful, is it a necessity?
I don’t have an overflow of cash, nor do I have the option of carting him around from one appointment to the other. Thankfully he has few limitations, I myself don’t view them as limitations but John Public may not agree with me. I will appreciate any feedback you can offer. Blessings
Hi LJ, I just saw this message, sorry for the delay. I believe that getting a diagnosis is truly necessary in order to fully understand the spectrum and what interventions can be put in place to help him. As he gets older, his needs will change and you might find yourself in a difficult situation when trying to find schools or services without a formal diagnosis. Hope it helps and wishing you both all the best!