Overcoming challenges
THE challenges with a special needs child in Jamaica get more difficult as your child gets older. My son is now five and a half and in intermediate preparing for grade one. Things sometimes feel so confusing that we are left feeling overwhelmed.
My husband and I get this way because we are so eager to ensure that we are making the right decisions and get frustrated when the system is not how it should be. So we are reassessing the current system he is in.
There are so many great aspects about my son’s school that gives reassurance that that is where he should be; but there are growing concerns for us that the school doesn’t seem to be able to address. What I once thought was an enriching space is growing to be quite chaotic, at times, as more children are added with fewer of the resources needed to help each one. In all fairness, his school really has the best intentions and is trying with all they have available, but the reality of not having the resources to meet the needs of each child means my child’s total needs are not being met.
Part of the problem, in my view, is that the Ministry of Education is not setting clear objectives as to how to manage children with special needs, leaving many schools grasping in the dark.
Amari’s school is very detailed in their feedback, and when I couple that with input from where he gets therapy as well as from his shadow, it’s all very overwhelming to process everything and sometimes I just want to scream or curl up in a corner somewhere. At these times I just breathe and focus on the positives. I have to be on top of his academics which is getting more complex with phonics and number lines, reading and writing. Then there is attention span, his self-help skills, social skills, eating habits and the list could go on and on. I know I have some of the best help he can get and the information flying at us is actually what should happen; it’s just that sometimes the different reports are contradictory and we feel confused as to what stage of development Amari really is.
So we keep asking, is he at the right school? And if not, what are the other solid options? Do we have the right shadow? And if not must we truly go through another set of interviews and really try yet another person?
I think I am driving my husband crazy sometimes with the possible options we should consider while he works tirelessly literally through the night so we can afford to pay for all the help Amari is getting. Sometimes I wonder if my expectation for special needs education in Jamaica is unrealistic and utopian. Or maybe my expectations are too first-world; maybe we need to just pack up and take Amari there where it is perceived to have better and more affordable resources.
We have had medical complications too over the holiday while visiting with our family in the States. Amari had a seizure on Christmas day. I have written before that he has had seizures; however, next month would have made three years since his last. This time he was totally nonresponsive as opposed to previous times where he would have a convulsion. This time he was unable to speak, stand up, hold up his head and he messed himself. Horrified, we rushed him to the ER where we were told it was a seizure. So his neurologist who had planned to wean him off meds next month, now instead increased his dose and the prognosis is that he will have to be on them for at least the next three years.
If you have a child with special needs in Jamaica then you have probably felt or are currently feeling as overwhelmed as my husband and I do at times. It can be difficult and that’s why I write; we parents need an outlet, we need to reach out to each other and offer encouragement. Even though the pieces are all up in the air it will fall into place eventually if we just keep at it. Improvements in the system, however, require us speaking out. We need to draw greater attention to the issue of special needs, advocacy is needed, so additional resources can be more forthcoming to alleviate the high cost and the crazy confusion that is often present.
What keeps my family going is a relentless spirit that says Amari must be given the best possible opportunities. We work tirelessly trying to analyse the system to find the right solution. I know God is at work in this situation and no matter how challenging it may feel sometimes Amari has already fought and conquered much more than what he faces right now. He is a miraculous joy that has such a sweet spirit and, yes, his energy keeps us on our feet.
Sara, mom to five-yea-old Amari, is an advocate for children with developmental delays. Amari was born three months early at one pound, and was hospitalised for three and a half months after birth. Keep checking this space as Sara tackles the issue of children with special needs. E-mail her at francis.m.sara@gmail.com.
