Friday, 10 April 2015

A is not always for 'apple'...

So, with it being Autism Awareness Month, let me start by giving you a bit of background for this post...

My son, Darren, has Asperger's Syndrome (AS), which is an Autism Spectrum Disorder (ASD). It is characterised by difficulties in social interaction (they have to be taught how to socialise etc.) and non-verbal communication, repetitive behaviours or interests (Darren loves trains and Transformers......a LOT!!). It differs from other autism spectrum disorders in that his language and cognitive development is not negatively affected, if anything, they are highly developed. With Darren his brain never shuts off, it is constantly going and trying to figure out how things work. He loves reading and his vocabulary is outstanding. Another real-life example is he'll get a new PlayStation game and get to the end of the game within a day or so and then he'll start it again and finish it again, and then start it again and finish it again...so within a week he would've started and finished the same game a number of times (if you want more info on AS or ASD go to: Wikipedia).


How it all started


Darren was in nursery school (kindergarten) when we first picked up that something wasn't "quite right" with him. Please don't get me wrong - I'm not saying my son is stupid or anything like that, his brain just processes things differently to what the world terms "normal". He would get completely overwhelmed with all the noise of the other kids and of his teacher's loud "shrilly" voice, he would play on his own (no social skills) and didn't want to be involved in group activities. We sent him to Grade 0 in a mainstream school and he battled throughout the year, but his teacher was amazing and managed to get him through the year. But after much discussion with her, we kept him back as she didn't think he would manage Grade 1 at his level of maturity or that he would cope emotionally.

At the beginning of his second year in Grade 0 we had him assessed by an independent psychologist and she diagnosed him with Asperger's and referred us to a psychiatrist for further assessment and confirmation.

After some observation, his psychiatrist sent Darren for a brain scan to rule out the possibility of epilepsy. She thought he was maybe experiencing seizures known as "absence seizures" due to the fact that he couldn't focus his attention on a single one thing for very long. An absence seizure causes a short period of “blanking out” or staring into space - most of the time the person doesn't even realise that it is happening (if you want more info go to Epilepsy Foundation). The brain scan was done and the tests came back negative - it wasn't epilepsy. Now, at least we had a way forward as it could only be one other thing - Asperger's. It was at this point that he was diagnosed with AS.

He was put on medication for concentration as well as anxiety and he has been a different little boy ever since. Now, this is a very highly debated topic - whether to medicate or not - and everyone has an opinion about it. I chose to go with my gut as his mom and decided to medicate my son, as it was going to assist Darren in class and help him cope with his life.

His second year of Grade 0 was still challenging, but he (we) made it through. We decided to remove him from mainstream and put him at a government remedial school for Grade 1. The reason why the government school, is because the cost of private remedial or special needs schools are exorbitant here in South Africa and, to be honest I'm not sure how most people afford them, together with all the therapy (OT and speech, etc.) and other things that go along with having a special needs child. Anyway, he coped a lot better at his new school as the class sizes were a lot smaller, but the school as a whole was still quite big as it went from Grade 1 to Grade 12. Still too much to overwhelm my little boy.

Grade 1 was still quite tough, but he made it through. His teacher told us that he would often sit under his desk to escape the constant overwhelming bombardment of sound and sensory over-stimulation and overload. During the first term of Grade 2, his teacher called us in and told us that we needed to find another school (where they offered more 1-on-1 attention) as he was not coping at the level he needed to.

At this point I had a total emotional breakdown. How were we going to suddenly afford school fees that were so out of our reach?? Since Darren was diagnosed, I think I was just operating in "survival mode". I had just become so exhausted! Exhausted of being strong all the time, exhausted of dealing with the stress of a special needs child, exhausted of being a momma to my daughter - Emily - who also needed attention from me, exhausted of being a wife to my hubby who was also dealing with all of this, exhausted of having a full-time job that is very demanding in itself. And now that we were faced with this, I completely fell apart. Not long after this though, I started the process of getting him into a new school.

The Turning Point


I had heard about this little school called the Studio of Learning (SOL) and had been to see the school before, but the cost, again, stopped us from sending Darren there initially. But now, we had no choice - we had to make a plan to afford it. I got hold of Clare Hulse, the principal, and thankfully she had an opening for Darren to start in the second term.

Sending him to SOL was the best decision we have made. It has been the biggest sacrifice for us! Financially we had to cut back on a lot of things and adjust our monthly spending to be able to afford the fees. But seeing the change in our son has made it worthwhile. He has just grown and grown and grown.

I must admit it was a very bitter-sweet moment in our lives, good in that we now had a way forward, but devastating because our son, our sweet little boy, had autism! Something we never thought would happen. Jono and I had to work through our disappointment, our fear, our self-blame. I would ask myself over and over again: "Could I have done something differently?", "Was I a bad mom?", "Did I let him watch too much TV as a baby?", "What did I do wrong?". The answer to all of these is: NO! I did nothing to cause this! It took me a long time to believe this truth: Nothing I did or didn't do made this happen to my precious boy.

With AS or any other ASD, routine and continuity is always key. So we always strive to have continuity, routine and structure in Darren's life, because if anything changes in his routine, it throws him completely. A little thing that wouldn't affect us at all like suddenly deciding to go out, or suddenly telling him to go do something else - without giving him enough warning to complete whatever it is he is busy with - an example of this is telling him he needs to go bath and he's busy playing - you have to give him a warning 10 minutes ahead of the time you want him to go bath and then again 5 minutes ahead of the time and then eventually at the time it is easier for him to leave whatever he's doing and go bath. These types of things totally throw him if he doesn't have the proper pre-warning or routine and cause him to have a meltdown and sometimes it's a huge challenge to bring him down from that meltdown. As he is getting older, it is getting easier to reason with him, but he still needs that warning ahead of a change in his routine.

Four years later


Now Darren is in Grade 4 and is coping so well with most things. His social skills are getting better - he's learning how to play with his friends and how to interact with them. He's learning how to be a friend. He's learning how to stand up in front of his class and tell everyone his "news" (a very scary thing for him). He's had to learn how to do a speech in front of his class (it is only 2 other kids and his teacher, but this took us about 3 weeks to get him to a point where he felt he could do it - the anxiety of it was just so overwhelming that he would just completely shut down).

Having said all this, my boy is the most amazing young man! He has taught me patience, how to live life to the full, how to enjoy every moment, how to laugh (he has such a dry sense of humour), and most importantly, he's taught me how to love by being the most loving child!

I am so blessed to be Darren's mom!!

I would love to hear from you, so please leave a comment below. Also, join my mailing list to ensure you never miss a post!
Until next time,
KB xx

(Disclaimer: the information in this post is from my own personal experience with my son, please seek medical advice before self-diagnosing anyone)