Almost a Year Later, Why Autism Belize?

So I’ve never done this before. Well yes, it’s pretty obvious I’ve never started an NGO before – but I actually wasn’t talking about that. Nope. I meant that I’ve never re-posted a blog before. I hope it’s not a terrible sin. You see, I’m feeling a little nostalgic. It’s been almost a year since I fell down this crazy rabbit hole and started Autism Belize. So this week, instead of talking about how far we’ve come and how much our little group of special parents have done, I would take you on a little trip down memory lane to show you why this all got started.

For those of you who have been around from the very beginning, please bear with me. For those of you who joined along the way…here’s a glimpse into why…

Why Autism Belize?

Well to answer that question, please first follow me for a little trip into my past…

From the first time Mateo’s pediatrician mentioned Autism, I started reading and researching. If you know me, you know I’m a reader – and that I can become more than a little obsessive. So when the doc mentioned the A word, I went full on obsessive reader. By the time we got the official diagnosis and had done a million and one blood tests, hearing tests, MRIs, etc, I had read so many books. I had even started attending the free parent training at the Geneva Center in Toronto. At that time, I had every intention of making Autism my bitch. (oh! What little did I truly know.)

Through my research I quickly learned that Canada had a 3-5 year waitlist to access much of their services. I focused on what services were available in CARICOM countries since I knew we could possibly find work there. I still thank God the day I discovered the Jamaica Autism Support Association (JASA) which lead me to Lisa Stoddart and her center, Therapy Plus. JASA, on their website, had a list of all services available in Jamaica- from inclusive schools, to speech therapists, doctors, etc. So, you guessed it, we moved to Jamaica. Most thought we were crazy, but I spoke to Lisa. I visited her center. I knew.

Finding a Community

Beyond helping me find Therapy Plus, though, JASA helped me with so much more. When I first went to one of their Parent Support monthly meetings, I found where I needed to be. Mothers – and a few fathers- all who had children on the spectrum, knew what I was going through. They listened and offered support. I soon realized that from the time we started to get the diagnosis, I’d had my head down. I was so focused on learning more and trying to ‘fix’ Mateo, that I hadn’t looked up. I hadn’t thought about other families who were also struggling. I wasn’t balancing my life. I don’t think, at the time, I was really enjoying motherhood or my son. They helped me find balance and refocus my life without my even realizing it.

Yes, we would cry and moan about our trials and struggles. But, we also laughed and planned beach trips. We went to ‘investigate’ the new place offering equine therapy. They helped me find a ‘special needs’ swimming teacher. Mateo made life-long friends.

JASA

The co-founder, Kathy Chang, also pushed to grow JASA. So we were always striving to do more for our Autism Community. We organized Parent-Teacher workshops with experts we brought in from the US and with our local resources- the wonderful therapists and doctors who worked closely with us at JASA. With the help of Rotary, we organized the first Surfing for Autism event. We had our annual balloon release to celebrate World Autism Awareness Day, Autism friendly Christmas parties and Autism friendly movies. We hosted cocktails for fundraisers. We had an Autism friendly mass at the various churches every April. We would meet with families just getting the diagnosis to offer support and guidance. We hosted free dental clinics. We worked with the local universities to lobby them to start programs regarding careers in Autism and soon we were partnering with them to work on projects and promotions.

JASA built a strong network. We kept talking to the public about Autism. JASA supports their families, works with the professionals involved in Autism, and would do so much to educate. This has had such a huge effect on Jamaica and has helped to lessen the stigma there. Honestly, beyond all that, JASA helped me to truly accept this was a life long journey and to understand it wasn’t about ‘fixing’ Mateo, but helping him with his struggles and helping the world understand him.

The parents who make up JASA all work. We all have children on the spectrum. Some believe in the GFCF diet and proper nutrition. Some swear against medication. Some swear by ABA. We all work with our kids in different ways. But we understand that whatever route we choose, we are working for the best for our children.

So back to the original question: Why Autism Belize?

Well, when I moved home to Belize, first of all, it wasn’t easy trying to find what services are available, what doctors can help, etc. I’m not saying there ISN’T help or services, I’m just saying, unless you know, it’s hard to know.

Then I’ve spent time talking with parents with children on the spectrum. It’s amazing how many parents have different stories and experiences but all will still talk about the feeling of loneliness, of people not truly understanding what they are going through. Most speak about not knowing what to do or where to go for help. Many broke my heart talking about the lack of friends for their children and the lack of a true support system. A few even talked to me about just not knowing. They’ve got the diagnosis, but now what?

Of course, too, there’s the general lack of information about Autism and the stigma that goes along with it. I’ve gotten the looks in stores and in public when Mateo will flap his hands. I’ve explained to those who try to talk to him that he is non-verbal and on the spectrum, only to get the confused ‘huh?‘ look. I’ve had friends tell me that they are amazed how open I am because in Belize people don’t feel comfortable talking about this stuff.

Honestly, anywhere in the world, unless you are directly affected by Autism -whether you know of someone or work with someone on the spectrum, many truly don’t quite KNOW Autism. And I get that. I didn’t KNOW Autism until I lived it either. But this ‘ not knowing’ does lead to that feeling of loneliness most of us feel as a parent with a child with special needs. And it does lead to misunderstandings and stigmas.

THIS is ALL why Autism Belize- this and so much more.

The goal of Autism Belize is to build a strong and vibrant community of Autism and other special needs families, professionals working in the field and Autism champions and supporters to help Teach Autism, Promote Awareness, and Show Acceptance and Provide Support. A Belize that is educated about special needs and accepting of differences will be a stronger, kinder, transformed Belize.

This is my hope. This is my dream- working together we can support each other while educating Belize. I KNOW it can be done. I’ve been watching JASA do it for over a decade. Hell, I’ve worked with JASA to help this happen. I also truly BELIEVE that it MUST be done – for my child and yours, for a better Belize. I’m not saying it will be easy. I’m just saying, let’s start talking. Let’s share. Let’s just work together to help each other out. That’s our first step – and honestly, even with COVID-19 postponing so many of our plans, I already see this happening.

So yes, why Autism Belize?

Because we need it. All parents in our special needs community need support. And together we will be a much stronger force to accomplish real change, progress, awareness and acceptance.