Autism Spirit – A Non-Profit Support Group for Families

In October, our girl…one of our Sangha Trinidad, instructors – Michelle Foreman – did something incredible!  She launched an organization called AUTISM SPIRIT.  Why is this cool?  Read on to find out more…

KB:  HEY MICHELLE!  SO YOU LAUNCHED THIS ORGANIZATION OR PROGRAM CALLED AUTISM SPIRIT.  I KNOW THIS IS A GREAT THING, BUT PERHAPS YOU TELL US MORE.  LIKE FIRST OFF…WHAT IS AUTISM?
MICHELLE:  Wow…Autism…where exactly do I begin???  How about I give you the technical info first…
Autism is a spectrum of complex neurodevelopmental disorders, which affects different abilities of the brain. The term spectrum means that while all autistic people will share certain difficulties, they will also have very varied mannerisms and affectations. There are three main areas of difficulty, which affect all autistic people to varying degrees, namely:

• Social Interactions
• Communication (some people are highly verbal, some are non-verbal. Language is always a challenge because even highly verbal individuals often are very literal, so they will have difficulty understanding sarcasm or idiomatic language) and
• Repetitive Behaviours (including adherence to routine).
• Some autistic people experience over or under sensitivity to sounds, touch, taste, smells, light and colours.

  

  KB:  WOW, OKAY, SO WITH YOUR CRAZY SCHEDULE…WORKING AS PRODUCTION SUPERVISOR AT ANGOSTURA…HAVING A SON…BEING A SINGLE MOM…ANNND NOW BEING A CERTIFIED YOGA INSTRUCTOR…HOW ON EARTH DID YOU GET INVOLVED IN AUTISM?  AND/OR WHAT HAS BEEN YOUR EXPERIENCE WITH THIS? 
  MICHELLE:  Long and short?  My son!  My son, who is now 7 years old, was diagnosed as having Asperger’s and Sensory Integration Disorder, about 2 years ago, when I ran into immense difficulty in getting a primary school to accept him. Asperger’s is categorized on the autism spectrum, as being more high functioning. Imagine the host of emotions that I felt when schools were telling me that he wasn’t ready for primary school without any further elaboration… my child who was speaking fully at 12 months of age, able to count to 20 and say the full alphabet at 14 months, reading on his won at age 2 years, who astounded me daily with the accomplishment of his milestones. Thank God for the rare few in the school system who have the experience to detect and make sense of the little tell tale signs. We applied to Blackman’s Private School and it was there that Mrs. Blackman was able to pull me aside after just a few minutes of observing my son and suggest that I needed to get him assessed. The little things that I never pieced together and I initially thought were just his personality, were all part of a bigger picture…

I’m sure that many may read this and think but what’s wrong with doing those things? And the truth is that if you consider them independently, they do seem very normal, maybe just a little quirky. But when these signs come together and then impact a person’s ability to interact normally in a social setting, that’s when you know there is a bigger issue. Even though Joaquin was highly verbal, his speech is very methodical and pedantic. Most of the times, it sounds as though he is lecturing you, which is very characteristic of Asperger’s individuals (called “little professor” speech). He cannot read facial expressions. So if you don’t say to him “I am unhappy or upset”, he won’t be able to determine that and then won’t be able to respond accordingly.To date, my son has extreme difficulty interacting with other children and tends to prefer adults instead. He has also developed high anxiety which is common with autistic children.
KB:  YES, I REMEMBER YOUR DISTRESS BACK THEN TRYING TO FIND A SCHOOL.  AND I REMEMBER HOW DISTRAUGHT YOU WERE WHEN YOU TOLD ME.  MY MOM HAS A WAY OF SEEING THINGS…TRUST ME WHEN I SAY IT WAS NEVER EASY TO HEAR GROWING UP, BUTTTT, YOU SEE THE REASONS WHY LATER AND USUALLY THEY MAKE SENSE AND SEE THE LIGHT.  THANK GOODNESS THAT YOU WERE ABLE TO GET ANSWERS AFTER THAT MEETING, EH?

KB:  NOW HOW DID THIS LEAD TO YOU STARTING UP AUTISM SPIRIT?  WHAT IS IT?
MICHELLE:  Autism Spirit is a parent support group that started originally on Facebook, but has now grown to be an actual in-person support system. Spirit stands for:
S – support
P – parents & people
I – individuals first
R – resources & research
I – involvement
T – team effort

KB:  AND WHY DID YOU START IT?
MICHELLE:  My journey with autism has taken me through many emotions. At one point, it almost felt like I was going through the stages of grief and in some ways, I probably was. I needed to grieve for the child and my dream of what I thought he was in order to reach the place where I am now. The first three stages of grief hit me HARD!!! Shock! Denial! Anger! I was shocked. I refused to believe that my child was autistic. I was angry at myself for everything that I thought I did wrong during my pregnancy. I was angry at the world and at God for making my child go through one more thing to add to the laundry list of other stuff. But as a single mother, I don’t often have time to wallow in my state and expect someone else to get stuff done. I have to figure it out. And that was where Facebook came to the rescue *LoL*. My intent was to use some of the parenting groups that I frequent to help find resources. Over a few months, I developed incredible friendships with parents experiencing the same as me. And then suddenly I realized that my name was the one being tagged whenever a question regarding autism came up. As this journey has continued, I realized the immense need for a support group. A lot of parents don’t know where to go to get assessed. They don’t know how to discipline their child because of all of the other emotions involved. They don’t know what therapy is best or where to get it. They don’t have people in their lives who understand what it’s like and can empathize with them. And that was where the online support group came from. About two months ago, Joaquin’s former speech therapist, Donnella Rodriguez, messaged me and suggested making this a real life group and with the help of The Right Start Early Intervention Program, which is her pre-school setting for autistic children, it has become a reality.
KB:  THANK GOODNESS FOR DONNELLA!!!

KB:  RIGHT SO NOW YOU HAVE THIS AWESOME GROUP CREATED…WHAT ELSE DO YOU THINK TRINIDAD AND TOBAGO NEEDS TO DO TO HELP?  GOVERNMENT?  ITS CITIZENS?
MICHELLE:  Sigh… where do I start? Unfortunately the lack of available resources is a worldwide issue, not just Trinidad & Tobago. My aunt in England tried unsuccessfully to get her grandson diagnosed for over 10 years. And if you view any international online support group, you will read numerous similar stories. However, it was announced last week that all matters related to special needs children would be assigned under the purview of the Office of The Prime Minister in Trinidad. It remains to be seem what kind of impact that will have long term. Presently, there is a huge need for more free resources… for assessment of children and therapy. The limited options are over-worked, which is why waiting lists are six months or longer. Resources are focused on low-functioning individuals… the ones who may never be able to live independently. And while I understand the greater need being addressed, it doesn’t make my son’s challenges any less. Education is also a major concern. Presently, there is NO school in Trinidad or Tobago to satisfy the needs specifically of autistic children. Parents are forced to home school or look at private options, which are still not always feasible or successful.

For citizens, I would ask that we all take the time to understand what autism is. As human beings, we tend to be able to connect better with what we can visualize and I believe that this is one of the reasons why autism is still very difficult for many to grasp and understand. One of the most common statements that any parent of an autistic child will hear is “but he looks so normal”. To which my response is “Please explain to me what autism looks like. It would have saved me a lot of money that I paid for assessment” *SMILE*. Even if you have not been affected directly, the likelihood is you will. The most recent studies have shown at least 1 in 45 children is on the autism spectrum. This is not an illness or a disease. It’s simply a different way of processing. And the only way to help is to understand. Too often, people like to offer their opinions, which can be well-intentioned, but sometimes devastating to a parent who is simply doing the best that they can. I personally am immune to unsolicited opinions but not everyone has the same mettle as me.

KB:  ANYTHING ELSE YOU WANNA ADD? 
MICHELLE:  One of my biggest peeves and one of the biggest misconceptions regarding autism is that vaccines cause autism. This has resulted in an anti-vaccination movement that has not reduced the likelihood of autism, but instead seen a resurgence of measles, a devastating illness that was almost eradicated. So where did this theory come from? Several years ago, medical research was published that indicated a causal link between the MMR vaccine and autism. That research was later proven to be fraudulent and the individual responsible admitted to inflating information. He lost his medical license and the publications were all retracted. However, years later the damage still exists. Many people believe that autism is caused by vaccines and the availability of information on the internet makes it very easy to find whatever you need to support your beliefs, whether it is factual or not. I have accepted that I may not be able to change people’s minds. But what I do tell them is that if I had a choice between having an autistic son or one affected by a disease where there is a 30% possibility of developing blindness, inflammation of the brain, pneumonia or death, I will take my chances with autism. My son is the most amazing and astounding child. He is brilliant, above intelligence. I call him “my mini Sheldon Cooper” because his behavior is so alike to The Big Bang Theory character. For those who don’t know, watch an episode of The Big Bang Theory. While the show has never acknowledged that to be the intention, the character is classic Asperger’s.
KB:  HEAR HEAR!!

Michelle, what can I say??  Your strength and tenacity can only be admired and celebrated!!!  I can easily say for me that you have helped me tremendously with this yoga business, and I am sure those in your group will be the beneficiaries of all your love and care too! 

You didn’t mention it so I am.  Michelle at some point you are going to need some sort of financial help to keep this group going…I’m sure of it!  So I’m gonna put it out there…if ANY of you reading this, feel so inclined, please feel free to send in donations.  Michelle, you should set up an account…you might be surprised *wink*.  In the meantime, I have been so blown away by your work, that I would like…or rather The Sangha Trinidad and The Karma Foundation (a charitable organization that I started almost 10 years ago) would like to give you our donation raised for Autism during our One World Yoga/Percussion Class…we raised $1300!  Maybe you use it to buy tea and snacks for your meetings…maybe you pay for a family in need’s therapy?  But I will leave it to you and trust in your efforts.  And folks this is something that is out of the realm of red tape so if you just wanna help…help!