momtuition

My sword is just for “show”. I prefer the “pen”

Posted on: April 2, 2011

Today is Autism Awareness Day and I thought I would share an excerpt of a letter I had written to the editor of a newspaper a few years ago after reading something on the subject in the paper.

Dear Editor,

Thank you for separating yourself from the pack and being the one to include an article in your paper about Autism on such a momentous day… World Autism Awareness Day; celebrated on April 2nd every year.

As I listened to the Observer AM show yesterday I became intrigued when one of the hosts mentioned the topic of Autism – And in my complete excitement I ended up here; sending you an email – Because at last Autism is getting some primetime exposure (in Antigua & Barbuda) and that doesn’t happen often. Hopefully one day the topic of Autism can move from page six of a newspaper or side remarks on a radio show to front-page/headline news.

My son was diagnosed (in the US) with autism about 4 years ago. This was after constant complaints to our pediatrician (and even friends and family) that something just wasn’t right. I started doing some research online and found out about Autism. On a whim while he was in the US we decide to have him tested and that’s when we found out he was autistic. Whatever you’re imagining as you read this is only the beginning of what we went through. If you’ve ever grieved for a dying loved one you’ll know the denial, the anger, the bargaining, the depression, and finally the acceptance.

Don’t get me wrong. Having a loved one with autism is not the same as having a loved one dying. But this was a major unexpected change in our lives and there were some definite similarities. At that time we felt so alone not knowing any other parent (or anyone for that matter) that we could talk to. So we went online (we read everything we could find on the subject and joined websites with support groups and forums). It was such a relief! Finally after going the length and breadth of Antigua we located a speech therapist (Ms. Francis). After that I met a mom at my son’s swimming class who had two boys that were on the on the spectrum (Autism Spectrum Disorders).

When I first found out that there was another parent who had autistic children attending the same swim classes… I was excited, I was anxious, I was hopeful – Finally I was meeting somebody who actually knew about this because they were living it. We (Caroline) would talk for hours, and this was someone I did not know previously – But there was a connection, we shared, a bond that up until then I had not experienced with anyone else other than his dad – And that was different because we were (dad and I) both struggling to cope. That mom I met later placed an ad in the paper seeking to form an Autism Support Group and I was one of the first persons she called. I was about to find out we were not alone. I had moved on from being mother of the weird kid to learning there was a community of like-minded people. I cannot express the depth of my excitement and at the same time relief.

Excitement not because I’m happy that someone else is going through this but excited because now I will have a group of people that share some of the same issues as me, people that I can share ideas with, people to celebrate the small things with that parents of typical children don’t get. It was just nice to be around others who don’t stare or bat an eye when your child has a meltdown – Nice to sit amongst them and vent and talk about our children’s accomplishments without having to go into an hour long speech explaining what ASD is and how it affects your child before actually talking about what is troubling you. Sadly this group no longer meets as often as we used to, but we do get on the phone and call each other as well as send emails. It is something that I’m working on getting back on track though, because I know there are more families out there who feel as if they’re going through this alone and could use some support – Families out there who feel ashamed (Hide de funny pickney!) and are still working through the process of accepting their child. I want to tell them there are other families here and they’re not alone – And we don’t need an explanation.

Word of caution…

In fear of being told that their child may be affected with some type of disability, many parents avoid getting a diagnosis – They ignore their “gut” instincts – All along failing to realize that pretending that it does not exist does not change the fact that there could be problem – And that it’s the lack of proper treatment, if there is a problem, that could (and will) add to their (and their child’s) distress/development.

I’ve also found that well-meaning caregivers may sometimes treat your children differently; this should not happen and in a way may make things worse for them. They don’t demand that they finish their coloring like all the other kids; they’re autistic. They don’t stop them from running around like crazy during circle time; they’re autistic. They speak louder and more deliberately to them, as if they were hearing disabled, which they are not. This is the opposite thing to do for any child, even more so for a child who needs structure and prompting. If you have to constantly explain and coach them on how to not treat them differently; then do it. It will be for everybody’s benefit.

A bit about my son…

Diagnosis: He was diagnosed with PDD-NOS (Pervasive Developmental Disorder Not Otherwise Specified)

Home Life: Challenging but happy since I know what’s important now.

I’ve died a few times walking in on him jumping off the counter top (at 3 yrs.)

I’ve woken up to find my living room floor filled with ripped plastic bags

I’ve run through the streets sick with worry because someone left the gate open and he went walked off.

I’ve been able to memorize entire story books and songs from movies; just another tool to use if he has a meltdown.

I’ve made him cry and I’ve cried for him

I’ve gotten weird stares from people who’ve witnessed one of our conversations – I usually have to prompt him for responses.

I’ve gotten goose-bumps from watching him use the computer for the first time with no help – This was at 2 years old.

I’ve cried with sheer joy the first time he spelled a word – That word was elephant, followed by donkey, giraffe and so many more on the same day one after the other (when asked). I called and emailed everybody I knew

I’ve remembered having more money in my pocket

I’ve longed to be bored

I’ve wished that child would stop destroying the trees in the yard and allow me to re-use my plastic bags

I’ve prayed… A lot

But I’m a parent, you see, and I know what’s important now – And because of this I’m happy; and so is my son, abilities and all!

###

I know… It was a long letter. Had a lot to say. I still believe that the pen is mightier than the sword. Although sometimes I wish I could first draw for my “sword” without consequence – But alas I don’t live on a movie set, I live in the real world.

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2 Responses to "My sword is just for “show”. I prefer the “pen”"

Thanks for sharing!

The pen is/was mightier than the sword! Well put together girl! Which they would reprint as there are still so many people with ASD that are afraid to accept or get help! I know that this would truly help now that this disorder is more prevalent in our little island!

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