This week I’ve been working on updating the resource page for the Autism Belize website and reaching out to therapists trying to organize more Guest Speakers and/or webinars. At the beginning of COVID-19, therapists seemed to have more time. Now, they are busy again with tele-therapy. This is a great thing for families – to be able to receive therapy in some form or another. However, it is making scheduling a bit challenging. This is not to say that we won’t have some talks coming up in the not too distant future. We are definitely working on that!
This is really important to me. We need to have the information about resources (therapists, doctors, inclusive schools, etc) and also advice and guidance for families, teachers, and care givers easily available.
Difficult Times…
I still remember vividly going through the whole diagnostic process with Mateo, even though it’s been over 10 years now. It was a truly frightening time. There were the 50 million questions you needed to answer. There were the evaluations and watching doctors trying to get Mateo to do things that only frustrated him. I was worried he was deaf. I was terrified they would confirm he was on the spectrum. The doctors had mentioned Autism and I honestly really had no clue what Autism really was.
Like any new parent, I was dreaming of Mateo reaching the stars and doing all these wonderful things. Suddenly, I was scared of what his – what our- journey would look like. I worried about how we would be able to give him what he needs not just to survive, but to thrive. No more could I follow the basic parenting books. Reading What to Expect during the first years wasn’t going to help at all. Asking my mom or mother-in-law or sisters for help wasn’t going to work either. None of us had a clue what Mateo would need and how best to reach him.
So Vast and Still So Much of A Puzzle…
To make matters worse , I quickly learned Autism was SUPER complicated. What worked for one child was really only guaranteed to work with that ONE child. There were so many therapies to learn about: OT, SPEECH, ABA, Floor time, RDI, Playtime, Equine, Water and the list went on. Some specialists swore by special diets. Then I had to learn about all the OTHER issues- the apraxia, the sensory processing disorders. OH MY GOD. Looking back, I have no idea how I didn’t completely breakdown.
There was just so much to learn during a time that I could barely keep it together. Mateo wasn’t sleeping. Eating was an issue. I had stopped working and was worried about finances. Life honestly had never been that difficult. I loved my child, but I didn’t understand what he needed. I doubted- and many days still do- that I would be enough for him. Life was beyond difficult.
Thank Goodness for Support…
I say this knowing, that as I was going through this, I did have amazing support. Mateo’s Godmother and my mother-in-law were helping out tremendously. My uncle even came to visit to support me emotionally. I had insurance that covered quite a bit of the testing and evaluations. I was able to attend free parent workshops at night that covered a lot of the basics.
Parents in Belize going through this process might have family support. But beyond that? I know things must be so much harder. Insurance doesn’t cover diagnostic assessments. Many don’t even know where to go to get these assessments done. And then once the doctor or psychologist tells them their son or daughter is on the spectrum, then what? Where do they go for the information?
At this point, they are overwhelmed and scared and confused. It’s not the time to think they will be able to go research and buy books and search for online webinars. They are struggling at this point. Even the strongest, most educated parents with great jobs would be overwhelmed. Let’s face it, you don’t know all the ins and outs of Autism until you’ve lived it. At this point all you want to do is help your child. But how? Whom do you talk to that might at least know something?
Trying to Help in Whatever Way We Can…
THIS! THIS right here is WHY it is so important for me to have the Resource page be constantly updated. (Because there are places to go- people just might not know about them.) It’s why I need people to know about Autism Belize. It’s why we keep all the Guest Speaker videos on the Autism Belize Facebook page, on the Autism Belize YouTube Channel, on the Autism Belize website. Today you or someone you love might NOT need that information, but tomorrow… well, who knows? I didn’t need to know about Autism until I did.
I want to make sure any family who’s going through this difficult time can easily find this information – even though I know that right now it’s not that much. I want to make sure any family who needs to start this process knows that they can reach out and someone who has been in their shoes will be there to listen, someone will be there to tell them that it’s not the end of the world. It’s just a different path. I want Autism Belize to grow and be that ‘someone’ for anyone who needs us.