For the past few months I have developed a bad case of insomnia, my body could literally be exhausted to the point of seeing a bed and cry but my brain has been telling my body that it isn’t time to sleep but it is time to worry and boy, no amount of food, peppermint infusion or chamomile helps. It has been tough.
David Carradine, you know the guy from the old show Kung Fu? He said once: “Worry is a useless emotion”. My oldest son argues and says that even though worry can be a useless emotion, worry can also move you to action (Isn’t he smart!?) I have been worried (Well, I never really stopped) about my boys. It is so hard to explain with words the feeling of frustration when you would like to see things changing in the right direction for their benefit and you seem to be fighting against a wall over and over and over again. You see, children with Autism don’t grow into neuro-typical adults, no. Children with Autism grow into Adults with Autism no matter how high-functioning they might be.
I realized that even though there are a lot of things that can be done to help children and adults with Autism in Trinidad and Tobago, the kind of resources needed to make an enormous difference can only come through the government because they possess the financial resources to make things like that happen and of course, because it is also *their* job and *their* responsibility. Now wait, I am talking about REAL and MEANINGFUL changes, I am not talking about gathering our kids once a week to eat a pizza and a soft drink and pat ourselves thinking how great we are doing. No, I am talking about things that could change LIVES.
Can you imagine if every child or adult on the Autism spectrum can receive free therapy in our country? Can you imagine as a parent being the beneficiary of respite services so you can go out and eat a little ice-cream with a friend and renew your batteries while your child is being supervised by a qualified aide? Can you imagine seeing businesses, companies, professionals in our neuro-typical society willing to hire individuals on the Autism spectrum?
Can you imagine a public school catering for the needs of children with Autism with qualified teachers? Can you imagine every child on the spectrum having a school aide if they attend mainstream schools?
This is why I decided to start the Autism Parents Association of Trinidad & Tobago (APATT) I know you may wonder: Why create a new organization when there are a few ones already in existence? Because every organization has a part to play and yet, each one has a different vision and different goals they would like to accomplish. Things in Trinidad & Tobago tend to be generalized or ignored completely and when something is offered it is done in a way that really only organizations and privateers benefit. We need help for our children now, what we do as parents must help our children today. Help them as individuals, as human beings.
I have a dream with APATT and as John Lennon says : “You may say I’m a dreamer but I am not the only one”. This isn’t about me; this isn’t about a million pictures and meetings or useless balloons or blue lights during the month of April, like if balloons or lights HELP our children somehow and like if Autism only affects them 30 days out of the 365 days of the year.
No, this is about pushing for the SERIOUS issues that affects their everyday LIVES and ours as well. We are not asking for favors, we are not asking for pity or a handout…Oh no, let’s make that very clear. We are asking for what OUR children rightfully *deserve*. Autism Parents are fighters, we have many tigers and tigresses among our midst, it is not time now to sit still or just give up and think that nothing can ever change. No! CHANGE comes after much struggle; it has been recorded in history and is up to *us* now to write our own and seek the changes we want for our children.
Do these things matter to you? I am confident that they do. Do you believe in change? Let’s stop waiting on something to happen and make it happen. We are parents of children on the Autism spectrum – our voice must be heard now!