Wednesday, July 24, 2013

Autism For Dummies... Part Two.

... It's still wordy, sorry!

Psychiatry. a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment: now considered one of the autism spectrum disorders.
a tendency to view life in terms of one's own needs and desires.

The month that followed that conversation with Gerry was filled with diagnosis, occupational therapists, speech pathologists, the Autism Association, doctor's appointments, pediatricians  appointments and organizing what to do about BJ's education. To top it all off, during this time BJ was also diagnosed as intellectuality disabled as well. It was also sadly, a time we found out who our friends were but luckily our family was always there for us. Not only were Andy and I trying to deal with all this new information, we had all the emotional stuff to process as well, and after things had finally settled down to a point where the roller coaster slowed down enough for us to catch our breath, we found we could start grieving for the child that would never be... To this day, I still grieve for the man he would of become.

Before we go on any further, please let me make one thing very clear. If I had one wish in my life it would be to change BJ, but not for me or for his dad or brother but for himself. Adult life for my son is going to be hard and I often think about all the things he will miss out on. Driving a car, going to Uni, falling in love, having children of his own.... That's the really hard bit for me, and that's what I grieve for. And who will look after him when Andy and I are gone?... Out of everything this scares me the most.

When BJ started Kindy Gerry was our savior. I really cannot express how wonderfully supportive she and the staff were to us and we will be forever in their debt. They say that early intervention is the key to help Autistic/special needs children and they are right. I remember those times with happiness that my little boy was getting the help he needed but also with frustration, sadness and loneliness.
We had different strategies to deal with all that pent up energy that BJ possessed and for the possibility of him having meltdowns. BJ loved the sensation of bouncing and a trampoline was used a lot when he was small. Andy also built "The Pole" which was a large wooden 16 foot pole cemented in the back yard that had different levels of steel coming out and a rope on the tallest level. This was to stop BJ from climbing onto ours and our neighbors shed roofs and to give him the hanging sensation that he needed. I know this sounds like a very dangerous thing, but BJ had no fear and honestly he never ever fell his balance is that good. We also had the option of distraction, which to a screaming Autistic child who is having a melt down because it's too bright in the middle of a supermarket doesn't always work. After awhile our pediatrician suggested we put him on some calming medication. I can tell you now this was not an easy decision for us to make and it took a lot for us to say yes, but after two different types we found one that worked for BJ and for us. 

BJ's transition into school life was surprisingly easy but that's only because of the SSO's at Naracoorte South Primary. Deb, Sally and Tina. These ladies.. I have no words how much I appreciate and love these ladies. It also helped that we lived in a country town and everybody knew BJ and most parents were happy for their children to be exposed to a special needs child in their class room.  Even when Cam started school nobody ever teased him about his brother. I am not saying it was all smooth sailing. We had to deal with BJ biting and hitting because he had no other way to communicate. He also freaked a lot of the parents out with his height addition and wanting the sensation of hanging from the top of the school stair case rail. At one stage I had a mother who started a smear campaign and wanted BJ to go to another school. But in general those first years at the primary school were mostly happy. Then Andy changed jobs and then we moved.

Moving away from our family and friends was not an easy decision. Andy is a sales rep for a chemical company and is often away for a few days during the week. But the fact is that if we moved closer to Adelaide we would be in the middle of Andy's territory and this would mean less time for him to be away. We didn't want to move to the city so we looked at the surrounding towns instead. Straight away I liked Mount Barker located in the Adelaide Hills and had my heart set on moving there but we couldn't find a house that was in our price range (we rented the house out in Naracoorte instead of selling so money was tight). Disappointed, we started to look at neighboring towns like Little Hampton, Nairne and Strathalbyn. After weeks of looking we found a house we liked in Strathalbyn. The first thing that had to be organized though was schooling for the boys. Because we had so much success with BJ attending mainstream schooling we saw no reason to change and an appointment was made to meet the principle of the local primary school. BJ's time spent at the Strathalbyn Primary school was short. Two terms to be precise. His teacher didn't even try to help him and was constantly calling me to come get him. The SSO was not allowed to do anything in the class room and the whole experience was terrible. We had been totally spoiled by Deb, Sally and Tina and this was nothing like what we had been promised. I cried nearly everyday and Andy was frustrated with the whole thing, so when the possibility of BJ attending the Special School in Murray Bridge was suggested we immediately looked into it and started the transition process. 

Barry Downard was the first male teacher BJ had ever had and those first few years of BJ attending the Special School were wonderful. Barry had BJ focused and learning life skills, we couldn't have been happier. He was flourishing and learning and BJ was content, but unfortunately people move on and Barry left in BJ's third year. I honestly believe that after all the things we have gone through regarding BJ's education you have to be a certain type of person to teach these children. I live with one special needs child and could never do what these wonderful, dedicated and patient people do. I am in awe of them all. It's just the ones that think they know everything, and think the only solution is to send a board autistic child home and then have the audacity to also recommend that he have two days at home during the week just because this teacher couldn't be bothered to give BJ structure. Sorry, yes, I am still a little bitter about BJ's last year of attending the Special School. At the moment though we couldn't be happier with his education. BJ started attending the Murray Bridge High School Special Education Unit at the start of last year and he is exceeding all our expectations. He is now in Year 9 and his teachers are very supportive and I cannot praise them enough. BJ is learning all sorts of different and diverse skills including rowing, swimming and doing a work placement at Monarto Zoo. So, so far so good. Next year will be the big challenge though as he enters the senior school and if he keeps up all his good work I know he will be just fine.

Life is never dull with our kids. At the moment it's teenage city in our house and I have two boys both trying to find their feet in the world and heading down two very different paths. I couldn't be any prouder. I truly believe that Andy and I have been blessed in this life, autistic child or not. I love BJ's cheeky grin and his crazy sense of humor. I love that he will give you a hug out of nowhere and say "I love you mum", because when he was little I never thought he would say those words. I love that although he fights with his brother he also considers him the most important person in the world and Cam is the first person he will ask for when he walks in the door. I love that in the car he is my back seat driver and always tells me to be careful... One thing I have learned in this life is it's never what you expect it will be and although you might be thrown a few curve balls you take one day at a time and roll with the punches. Our story isn't finished yet but it's been one hell of a ride so far and I wouldn't have missed it, bad bits and all, for the world. Thank you so much for reading this.



Claudia said...

Thank you for sharing this Donna. As you know, we are at the beginning of our journey with autism, and boy, does everything you wrote here sound familiar; we haven't even started kindergarten yet. You write beautifully. God bless you and your family.

Kat W said...

I have no experience of autism but I found your story utterly compelling and very moving. Thank you for sharing and I very much admire your positive spirit - an inspiration to us all whatever adversity we face in our lives :-)

Hugs, Kat x

Michelle said...

You've told your story beautifully, Donna. You and Andy are amazing parents, and I'm glad that BJ got you. :-)

Dotty Jo said...

Thank you for sharing your story, I found it very moving and inspirational, Jo x

Marcia @ Pretty Things said...

Beautifully written, what an amazing legacy for your young man. He is blessed to have you both as parents.