Happy Mother’s Day to me!

A few nights ago, I dreamt October 17th 2008. I dreamt the weirdly colored pink pacifier because we lost the other one in the hospital. How could I remember that date so clearly? Because it was the day that I handed my 30 day old son to doctors, not knowing if I would get him back.

My son was born strong and healthy and even though I was a single mother, I had an exceptional support system. I was at home by my parents and being spoilt as much as their first grandchild. My milk was slow to come in so I chose to breastfeed and supplement with formula. Every morning, my mom would come and take my son from my room at 4.30am… feed him, change pampers, play with him and I got to sleep late.

But everything changed when he was 10 days old and he vomited for the first time. But that’s what babies do right? My inner voice told me that something was wrong but I was a new mama, so how much did I really know? Our pediatrician’s office became our second home and as the days slowly crept by, the vomiting got progressively worse. This was vomit spewing 3 feet away from a baby only 2 weeks old. We changed formulas countless times, I monitored my diet in case there was something in my system that was passing to him through the breast milk. But there was no change. I became completely overwhelmed… I wouldn’t let anyone feed him. Even though my dad was driving me and my mom to the doctor, I held my pain and wouldn’t let anyone know of the level of discomfort that I was experiencing just days after a C-section. The doctors could not find anything wrong to cause this extent of vomiting. So it became a constant guessing game trying to rule out possibilities. My son continued to vomit and with each day that passed, I blamed myself more and more. I believed that if I was a better mother, then my baby would be well and this would not be happening; even thinking that God was punishing me for my decision to be a single mother.

When my son was 27 days old, I was forced to rush him to emergency. He was severely dehydrated after being unable to keep down anything for almost 48 hours. I held my baby for countless x-rays, ultrasounds and a barium swallow (which I would not wish on an adult).

October 17th 2008, when he was 30 days old, I handed him over for exploratory surgery. While it was strongly believed that his condition was pyloric stenosis (an abnormality of the lower stomach muscle that causes the muscle to tighten and not allow for proper digestion, thus causing him to reject all oral feed), none of the tests had definitely confirmed their suspicions. So I had no choice but to sign away my son and pray for the best.

We were waiting for the time of surgery to be confirmed, so I pulled out my phone and snapped some pictures of him. My mom was with me and she initially moved his right hand, the one with the drips attached, out of the way. I put his hand back in place and she looked at me confused and asked “why are you taking pictures of his drips?” I responded nonsensically saying “he looks cute with it”. The truthful answer, which I never said out loud was “ I don’t know if this will be his last moments and I need this memory exactly as it is”.

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The moment that I handed my son to the doctor for surgery will stay with me for as long as I live. In that single moment, I understood the saying that “to be a mother is to forever have your heart walk around outside of your body”. Physically ripping my heart out of my body would have been less painful than what I experienced.

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To this day, I can still remember that anguish as if it happened yesterday. And I can still remember the overwhelming relief and incredible joy when my baby was returned to me, full of life as if nothing had happened.

It was confirmed that he did in fact have pyloric stenosis, but with no added complications. He recovered quickly and continued thriving.

This was the first of several trials that we have had to endure. With this first situation, he proved to me that he is a fighter like his mama and with the support of his mama, will triumph regardless of the challenge.

I am honored and blessed to be your mama 💙

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Education or Torture

Yesterday marked the annual Secondary Education Assessment (SEA)… that revered examination from which a child’s future success is determined. The test that almost always decides the advancement of children in today’s society. Yes, there are those who did not achieve their desired results and went on to incredible success later in life. But the reality is that for many, this examination is the beginning of achievement or struggle.

SEA came about in 2001 as a supposed improvement over the colonial Common Entrance exam. Call it what you want but it’s not improvement. In Trinidad, up to 1968, secondary school education wasn’t free to the general population. However, a select number of students who achieved success through the College Exhibition, were granted the opportunity to free secondary education. The College Exhibition was later replaced by the Common Entrance Examination, but even with the introduction of free secondary education, there was a prestige established by the exam. The previously existing schools catered to the higher classes of society, who had the financial resources to pay for their children’s education and it was of paramount importance to maintain that standard of separation. Additional secondary schools were established, but they were not on an even footing. They didn’t have the finances to be properly run, inexperienced teachers and a system still being fine-tuned.

50 years later and we still can’t figure this out. The prestige schools in the 1970s are still the prestige schools of today. Parents are known to bestow huge rewards on their children for success and to severely punish if their placement is not to the desired standard of excellence. Primary schools focus only on language and mathematics, to the detriment of art, music and sports, because those activities will supposedly have no bearing on success at SEA. At home, children are subjected to hours of homework and revision, with no time for play or relaxation. Children from the age of 9 are suffering from anxiety, nightmares, headaches, depression and countless other behaviors, stemming from this examination. Children have committed suicide due to the pressures arising from this day. And as much as some parents may try to hide their own emotions, they are also contributing their negative energies to an already volatile child.

Don’t get me wrong… I’m not blaming parents. I believe that the vast majority are doing their best with the skills that they have. They believe that a “prestige” secondary school is going to provide a doorway to better. They know that their kids are under pressure but in many instances, don’t know what to do about it. My question is… why aren’t we pressuring the government and ministry of education to make changes? Why isn’t this a more prevalent issue at election time? Strength is in numbers and if 18000 children are sitting this exam annually, that’s a lot of parents whose voices can be heard if they unite.

 

Yes, Professionals CAN be Allies too!

I wish that I could take credit for this post, but my mind would never have captured these sentiments so eloquently. Tracy Hutchinson Wallace has been my guide and rock from day #1. As the other half to our support group Autism Spirit, I have always explained our personalities as 2 sides of a coin… balancing, yet complementing each other. I’m the emotional, heart on my sleeve personality and she’s the pragmatic, educational aspect. But I think we are continuously rubbing off on each other and it results in this. That piece of writing that explains perfectly the logistical issues of the medical model of treating autism while exploring the challenges that can be experienced when the views of #ActualAutistics are pushed to the side.

 

A very brave therapist reached out to me the other day. I say “brave” because I know that my social media self (and me IRL if you are unlucky 😉 ) can be very offputting at times! Anyway, the therapist pointed out that professionals are easy targets for the anger and frustration of parents and disabled communities. They felt that we forget sometimes that they are not just service providers but humans with, often, a significant personal motivation for doing what they do. This was my response…

“Thank you for reaching out. Here’s the thing, you are correct that professionals are seen as service providers. And therein lies the problem. They should behave as if they are PARTNERS and ALLIES, offering supports, accommodations, education AND services to and for Autistics, not neurotypicals. Unfortunately, the medical model of Autism persists in trying to “cure” or “fix” Autistics, despite valid concerns and supporting evidence of the permanent damage inflicted by that attitude. It is disheartening, to put it mildly, to see this attitude demonstrated by a group that is governed by the rule “first do no harm”. It is “privilege” demonstrated in the worst way.

Therapists, as a group, claim to support Autistics, and yet:

  • you still use person-first language and functioning labels
  • you still design, promote and implement methodologies to “help” Autistics be “more” neurotypical
  • you “don’t have a major issue with the information that Autism Speaks puts out, even though that information and the organisation itself promotes an inimical, malignant view of Autism – that’s a disconnect that only neurotypicals can afford to live with
  • you don’t use your influence in the public arena to change attitudes of laymen towards disabilities
  • you don’t support the view that Autistics should be at the centre of, and drivers of Autism research, instead of being marginalized or ignored
    And worst of all:
  • you actively profit from your actions or the lack thereof.

Understand, I too was heading in your professional direction before life laid out another path, so I have no problem with people getting paid. I do not accept, however, getting paid to maintain the status quo, when that state is actively detrimental to your patients. Even professionals with personal knowledge of Autism are guilty of this.

Small wonder that Autistics are hostile – you are helping to make life harder for them, not easier. So, for the most part, you “look fuh what yuh get” as we say in the Trini parlance.

Look, it is commendable that your “deep personal connection” to Autism has inspired you and others to do what you do. From what I understand, #ActualAutistics, more than any other group in the various Autism communities, laud your respect for the privacy of your family members and loved ones. But they don’t need you to “advocate as a regular citizen”. When you do that, you are DELIBERATELY withholding two of your most potent weapons in the fight for Autism acceptance:

  • first, society’s general acceptance and respect for the knowledge and expertise and experiences of medical professionals, and
  • second, for those professionals who are not the primary caregivers, supporters and guardians of Autistics, the extra energy you generally can spare to be allies for ALL Autistics.

Some parental and family allies have the extra spoons to advocate for every Autistic; most don’t, and we could really do with the support and influence wielded by professionals who don’t actively have skin in the game.

If you really want to improve the quality of life for the spectrum of neurodiverse humanity, then don’t just exercise your profession, conduct your therapies and get paid. Instead, listen to actual Autistics, follow their lead in advocacy, make the needs of Autistics the centre of whatever you do and say, and use your privilege wisely. Be an Ally, not an anchor around their necks.”

If you are interested in the work our support group does, please check out this link http://www.facebook.com/autismspirit