Above: Raquel Gomes at her Mt D’Or home. Makeup by Shenelle Escayg, photographs by Mark Lyndersay.
Aiden, my first born, came into this world with no complications and progressed from a new born to a toddler with little or no problems at all. At 3 years old he started school where he transitioned well, considering he had never been to day-care, he moved into Infants 1/First Year, did all of his school work and was abreast with all his peers.
Early one morning when he was 4 years old, he had a seizure out of the blue. He was rushed to a private hospital and then transferred to Mount Hope’s Paediatric Emergency Unit, tests were run and we had to wait indefinitely for the results to be read to us. He was discharged within 24 hours after observation; everyone thought it was just a simple febrile seizure. Fast forward to one year later, he was having one seizure every 3 months, then every month, soon it was every week.
His father and I couldn’t come to a consensus; should he be medicated or not? His paediatrician recommended it, as did a top neurologist and a paediatric neurologist – but we were scared of the side effects and had no mile marker within either side of our families to show us that it would be okay.
Finally, I called his paediatrician and she let me know that we would have to make a plan to be with him 24/7 if we decided to not medicate him, in the event he went swimming or was climbing on the jungle gym at the park or riding a bike – someone would have to be there to ensure he didn’t get a seizure, hit his head or damage himself.
The message was clear – he would have to go on the medication, for a period of at least 2 years before he could be weaned off and we could retest and observe him.
After this, things went back to normal, but I noticed that homework became a huge challenge. He wasn’t understanding simple things and his teacher was clearly frustrated – she was sending home both homework and all the work he refused to do during school hours.
What was happening? Suddenly complaints started rolling in; he was fighting, disrupting class, refusing to do work during school, disrupting other children when they were actually doing their work. I soldiered on, thinking I could just teach him at home if his teacher was unwilling or unable to do so at school. A lot of people and family members thought he just needed “licks” – he was probably “spoilt” and needed someone to “manage” his behaviour.
Soon, homework became an epic battle, filled with tears and screaming. I kept thinking in the back of my mind, this shouldn’t be so hard. It bothered me that he still couldn’t read simple words at age 5. I kept remembering that at age 5 I could read fluently, in fact it was a criterion for admission to the primary school I attended.
I spoke to his paediatrician about it, she said it wasn’t a good idea to compare, everyone learnt at their own pace and in their own time. But there was more, when he was playing with the Hot Wheels cars he loved so much, he would line them up in a pattern by colour and shade, he didn’t like ice cream dripping on his chin, he didn’t like anything on his hands while he was feeding himself, he reversed a lot of his letters “b”, “d”, “p”.
She agreed, I should take him to have his eyes tested for now, and we’d see if he outgrew some of his “quirks” by his next visit. It turned out he needed glasses, and some things improved in school but not much.
The next visit rolled around and she asked him to write his name, so at 5 years old, he wrote his name, missing one letter with the “d” reversed as the letter “b”, she switched it up and asked him to just write a “d”, he just kept writing “b”s.
It was time for us to check it out further, she gave me a referral to two paediatricians both specializing in child development. I recognized the name of one the doctors, Dr. Jasmine Ramcharran, who was my paediatrician before I migrated with my parents, when I was two years old. I called and made an appointment.
I was shocked at the price of the assessment, but I wanted answers so I saved and went on the date. She took his medical history and asked some questions surrounding his everyday behaviour. I was suspicious to say the least, I recognized some of the questions from online – rocking, flapping etc. Was she leaning towards saying he was on the autism spectrum?
She ran her test which took close to two hours. I was a wreck by the time we left. How could I not notice all these basic things he couldn’t do? I was crushed to say the least, my poor kiddo couldn’t put together a simple 4 piece puzzle – no matter how she coached him; he just lined up the pieces in a neat pattern. He really liked making neat patterns from things.
There were other things: he couldn’t replicate simple structures she made from a few wooden blocks, he couldn’t visualize things she pretended to have inside her enclosed palm. Leaving her office, I had a knot in my stomach; I felt that all my worries were materializing and that it wasn’t just “quirks” that he would outgrow.
It took close to a week and a half to get the results. I finally had something concrete in my hands on it, all 5 pages – full of technical jargon, I had to read it, re-read it, then read it with Google, making notes and questions I had to ask. She saw that he was behind in several areas and thought he had a learning disability or two.
The final recommendation was a full psychoeducational assessment. She warned they were costly, so much so that she gave me a discount on her price for the assessment she had done. She gave me some pointers; shop around, some people advertise that they do it, but it’s really just the same assessment she did in 2 hours, the real one would take months to complete, as children give better feedback in shorter sessions over a period of time.
The price range started at $5k. I took my results and ran with it; I called/emailed everyone listed to get their availability and price range. I stumbled upon an NGO called Parenting TT that did it for half of the price, the other half was subsidized by the JB Fernandes Memorial Trust Fund II.
I checked the qualifications and experience level of the child psychologist assigned to me, to make sure she was not a quack or a newbie fresh out of university, the deal was just too good to be true. I went to the first session with his dad – by the second session I was going to appointments with my newborn, week old baby.
Nothing was stopping me from getting to the bottom of all his learning problems and finding a solution for him to succeed. It was a long process with a lot of questions for both parents and his new teacher. Everyone was on board and things started happening, after 6 months of sessions and 2 months of waiting on the final report, I had something concrete in my hand, this time it was 21 pages long.
I read, re-read and googled. The prognosis was that he was 4 years behind developmentally, but that he could learn, we just had to find different way to reach him. Conventional classroom learning wasn’t going to go a long way with him.
I read the recommendations and took him to an occupational therapist in our area. She was straight up and to the point – he needed work and it wouldn’t be fun. What appeared to be brightly coloured games to the average child was really work to develop his skills and memory in disguise – it wasn’t going to be fun for him and after a while he would want to skip sessions, but for it to work we had to follow through at home and in school.
I found a remedial reading and handwriting teacher in the area. She agreed to give him lessons from the foundation go up, she had patience and nothing he did would deter her. I put him in swimming and karate. I asked his teacher if she would be willing to work with him. I was no fool – the recommendations suggested for the classroom would cost money – I offered to buy the things she needed so she would be more open minded to implementing them.
Things started happening, his confidence grew and he started trying again. I won’t lie – it’s tiring and expensive having three boys, a husband, a household to manage and a full time job, most days I feel like a married single mother, some days I feel like throwing in the towel.
But all the small victories and progress are worth it. Recognizing when to say “enough” also played a part – I was getting tired and frustrated with all the shuttling around – so after the 3rd swimming cycle I opted out of it for the time being. It’s never easy with three boys, especially since my middle child is competitive, intrepid and extremely smart beyond his age – but I’ve found ways around that too. I’ve integrated him into the karate and swimming, and started asking his preschool teacher for homework assignments so he can feel important too.
I think my take away lesson from this is that mothers just need to get it done for their kids, no one is going to hand you anything, no one is going to care or advocate for your child. There’s no one for you to cry too – teachers are overworked and underpaid, their classrooms are full and their resources are few, there are no free occupational or speech language therapists or pro bono remedial reading teachers – all these people are self-employed and need to make a living too.
The only person that cares if your child succeeds is you. Therefore you have to make it happen, don’t be ashamed to share your situation and ask for help. Burn-out is real and all the required therapy surrounding a learning disability is expensive.
Ignore the loud mouths that tell you that your child just needs “licks” or that they are just lazy or those that say, “back in my day my great so-and-so didn’t talk until they were 12”. Trust your mother’s intuition and do what’s best for you and your child. I have never regretted swimming against the current and the naysayers and I don’t take victory in being right in this particular case with my son.
Nothing is “wrong” with my child – he learns differently and I’ll always be there to support him and help him achieve all the goals he sets.
Sponsors: Dale McLeod, Jacqueline Scott, Starlite Collection, Sacha Makeup, JB Fernandez Memorial Trust II.
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