Trials of an autism mom
AN AUTISM MOM
I NEVER ONE day thought that my sweet baby boy would turn out to be autistic. I don't think any woman becomes pregnant and hopes for a child with a disability. My son hit all his milestones, then almost as quickly regressed. He stopped speaking, he hummed, he would not sit in class, he had meltdowns, he displayed common traits of a child with autism.
The principal at the Early Childhood Care and Education (ECCE) centre he attended advised me that I should explore schools with smaller classes, as he would be lost in larger classroom settings.
The schools I called had waiting lists, some I could not even dream of affording and others wanted me to bring a child who stopped speaking for an interview.
Then covid19 came. My child was unregistered at any institution, he lost out on almost a year of formal schooling. I happened upon a centre which offered one-on-one sessions for children with disabilities. My son started these sessions which continued for months, as we navigated the pandemic.
When school eventually reopened, he started full-time. I bit the bullet and sacrificed even more to ensure that my child received focused education. After the second term, I was asked to produce a psycho educational evaluation for my son, which cost over $5,000.
This costly report made recommendations for even more expensive therapies which are supposed to assist with my son's development.
At this point, being financially maxed out, I decided to explore the disability grant for minors to pay for these therapies. I printed the online application and medical forms and enlisted the assistance of my family doctor who has been seeing my son since infancy. Upon review of the report, he asked me to bring in my son for a physical check-up before he signed and stamped the form.
I made my way to the social welfare office on the corner of Richmond and Duke Streets, Port of Spain. I will save my opinion on the condition of the building, but enter I did. I was greeted by a sign on bright paper reading, "Grants are not an entitlement. They are based on qualification." I thought, fair, but I wondered what these qualifications were.
I waited for my turn to speak with an officer. I presented the officer with the signed medical form and the application for my son. The officer looked through both forms and advised that everything was in order. However, I needed to furnish birth certificates, proof of address and identification.
Less than 48 hours later, I was back in the welfare office, waiting for over two hours, listening to life certificate holders chatting among themselves trying to figure out which of the different procedures they experienced was correct.
My name was called and I went to the reception area, handed over my documents and was immediately asked, "You got this online? This is not the form we are using..." I humbly took the new form and transferred the information. Next I was told, "This doctor not on the list inno..." Quite confused I inquired as to which list.
I explained that I was in this very building two days ago, who the officer I spoke to was and which office he occupied and that he never mentioned any issue with either document. The response was, "I don't know who you are speaking about, we have many officers."
My exasperation was peaking, when I was handed a list of "government approved doctors." The list only contained names and their fields, not the area they operated from, nor other relevant details. I inquired as politely as I was able at this point how I was to know who operated within my area. The response was, "Well most of them in Mount Hope"
I needed to vent my frustration and was able to have a telephone conversation with someone from the Division of Health and Social Services. I was advised to carry a form to the health centre my child is attached to, although his last visit was three years ago for an immunisation vaccine.
Again confusion reared its head as I wanted to know what the recommendation would be based on, since no supporting documents were required to accompany the medical form. What exactly was going to be the criteria for determining the mildness or severity of the minor's diagnosis? The mood of the doctor that day? The look of the parent presenting the medical form? The weather?
I suppose I will find out when I visit the health centre.
As World Autism Awareness Day is being observed on Sunday, I hope the ministry with the tagline "Helping, Empowering, Transforming Lives" aspires to do more than placing a lovely message in the newspapers.
I hope that instead of rocking socks for World Down Syndrome Day, the powers that be provide schooling and vocational opportunities for those who had no choice but to be born the way they were.
I hope that all intake officers at these ministries exercise more attentiveness.
I hope that support can be offered for caregivers who more often than not do not enjoy respite.
I hope that the welfare division understands that we want the best for our children. We do not come begging out of greed, only out of necessity.
I hope for my son, I hope for the families tasked with caring for people with disabilities, I hope for the children who are not given the same opportunities as their peers.
Autism awareness is about more than one day.
"Trials of an autism mom"