Autism For Dummies... Part Two.

... It's still wordy, sorry!

AUTISM:

noun

1.

Psychiatry. a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment: now considered one of the autism spectrum disorders.

2.

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.

Donna

Autism For Dummies... Part One.

*When I started to write this post I didn't know it would get so wordy, so please accept my apologies in advance and I hope you don't mind that it has turned into two part post...


At 22 years of age I had a clear vision of what my life would be like. I would get married to an awesome guy and we would have awesome kids and an awesome life. Yes, I was naive to say the least, because at 22 you just don't think of anything really going wrong. And yes, you have some set backs in life but basically we looked forward to becoming parents (well I did), having nice home and a happy life.

Andrew and I didn't have kids till 5 years after we were married. It actually took me that long to convince him that he wouldn't suck at being a dad. My first pregnancy was a real surprise and sadly, I miscarried at 7 weeks. Andy could see how much I wanted kids and because he loved me he agreed we could try again. My pregnancy was... Lets just say being pregnant was not one of my favourite experiences. I was relieved that I actually got past the 7 week stage without loosing him and I loved feeling him move inside me, but that I am afraid, was about it. I hated that my body changed so much and I really just didn't feel myself. It was an awkward and not a enjoyable part of my life and it was nothing like I thought it would be. There was one thing I was sure about though, I was certain that we were having a boy. We never even looked at girls names and after what was literary a minute of looking in the book, Andy picked out Brandon and I picked James (for my dad). We had always loved the name Brandon and we also like the fact that we could shorten it to BJ if we wanted.

 

 

BJ was born on the 9th of February 1998 at 10.45pm, weighing 6lb 7oz after a 3 hour labor. He was 3 weeks early and beautiful. The first six week of his life was a battle. He didn't like to be breastfed, he didn't like to be cuddled very much at all and God forbid if you tried to swaddle him. I remember that time in a tired blur. I remember I was practically living with my mum and I remember that my marriage was on rocky ground for the first time ever. After 6 weeks of constantly battling with BJ and wondering if we had done the right thing in bringing this tiny little person into the world, my mum had had enough. She sat me down an said to me that BJ needed to feed and he was starving and that although I had done an amazing job of trying to breastfeed him it was time to try a bottle. I had been trying to put this off for as long as possible and in my head I kept thinking... This is not suppose to happen! I'm suppose to be able to breastfeed my own child right? Why can't I do it... Am I a bad mum? Hundreds of midwives can't be wrong can they? Still, I let Mum go out and buy formula and then make BJ a bottle. You cannot believe the relief I felt as BJ gulped down the formula and right then and there I decidedly put away all those guilty feelings that I had about breastfeeding and midwives. Sometimes your mum knows best. BJ and I slept for 14 hours straight after that first bottle and life as a new mum was better. I finally went home to my husband and after some heartfelt discussions about how we both had to change because we were parents now, we settled into a routine.

 

The first time I thought something was wrong with BJ wasn't that I really thought something was wrong, just that I thought I had an extremely stubborn child. At 8 months old he still wasn't trying to crawl he was just happy sitting and when he wanted something he just pointed. I would go to mothers group and watch all the other kids making leaps and bounds in their progress but my little boy just sat and didn't interact with the others. At 10 months BJ decided to crawl, stand up and walk all in the space of a week. I was overjoyed. Maybe there wasn't anything wrong after all and it was all in my head, maybe he was just a late bloomer? At his first birthday party, after nearly all the guest had left Andy and I sat with some friends of ours who had a daughter the same age. The daughter was saying all sorts of things to her mum and dad and interacting with her parents in a way that BJ never did with us and I couldn't help this nagging feeling begin to creep back in to my head and heart once more that something was just not right with our little man.

Around this time I fell pregnant with Cameron. I must admit that I was enjoying this pregnancy much more than my first and that nagging feeling? Well, I just put in the back of my mind and only thought about it every now and again when BJ did something that was... Not quite right. BJ was a very energetic child. Ever seen that EverReady battery bunny? Well, he has nothing on my kid! BJ would climb everything. He loved been up high and if I didn't keep an eye on him he would be out the front door and off down the street in a flash. He had also started to walk a lot on his toes and flap his arms by now, but Andy and I just thought that it was really cute. So at 8 months pregnant I was running around after this little boy that was so full of energy and who kept me on the go from sunrise to sunset, life was very interesting to say the least. Cameron Scott was born on the 6th of September 1999. He was 2 weeks early and after 2 false alarms arrived in half an hour of my waters breaking and no... There was no time for drugs! Cameron was everything his brother wasn't. He breastfed easily, he loved cuddles, slept well and was a calm, be it very chubby, beautiful baby.
 

It was at this point I started to think that I might start putting BJ in occasional care at the local Kindergarten. It was for only half a day and it might make going shopping at the supermarket with only one little boy a bit easier. Gerry, the Kindy co-ordinator, was happy to take him even after I told her what a handful my little cherub could be. That first day I dropped him off feeling a little uneasy about leaving him in someone else's care but he ran off and started to climb without saying anything and Gerry assured me he would be fine. That afternoon, I went to pick BJ up and Gerry greeted me with a look of dread and anticipation on her face. I thought to myself that she was going to say he was too much of a handful and I had to take him somewhere else, but she kindly guided me into her office and asked me to take a seat. Here we go, I thought, but instead she said...  "Donna, we think that Brandon (she never called him BJ) might have Autism" "Oh...Ok" I said, somewhat confused.... "What's that?"

Donna