The Driessen Family's Story
Isaac loved being in his own world. His favourite activities were flipping his hands in front of his face – looking at the backs of his hands and then to his palms. He would sit on the grass outside, and hold his hands towards the sun, and flip his hands over and over again. He would play with our pegs. Only the blue ones though, and line them up in almost perfect formation – the longer the grass was the harder it was for him to do it perfectly – the way he liked things to be done. Everything needed to be even.
The bike Isaac had drove him crazy as the training wheels made the bike lean to one side. He would take the dogs dish and put it under one side of the training wheel to keep the bike straight, even, perfect to him. Everything he made even was not to be touched or moved. This would cause him to scream and run to you with his head down, ready to barge into you. He would too, and bite and kick. Then there was the chasing of straight surfaces . . . yes he would do this and would become very excited too. His little hands would clench tight and his mouth would open in amazement as he ran his eyes over the straight continuous sides of our table. A table top or kitchen bench, anything with a straight line to it would amuse him for half an hour of more. He would ride on his bike and lean in towards a pole. We’d all cringe, thinking he would surely hit it. He never did, he’d miss it by a millimetre and then turn the bike around and do it again and again. He never tired from the same things. He enjoyed everything to be the same.
Even driving became difficult and stressful. One day we needed to go to a shop before I dropped my eldest son to school and the fact I turned left at the roundabout instead of right caused Isaac to scream like he was in pain. He knew we were going a different way. He was so upset and all he could do was turn around in his car seat and look back to where we should be going. This caused him so much turmoil. Later, I would then drive around purposely, going in circles to try and cure him of this behaviour, and I would cry as I did. Wondering what was wrong with my little boy. What did I do wrong? Why was he so disconnected from me? I loved him, but didn’t know him. When he was about three my grandmother came up from Sydney to visit us, and she commented on Isaac and asked me one day “have you noticed Lisa Isaac never looks at you when he runs to you? He looks to the side but never at your face.” Until she said that I had never noticed before. That is when I started noticing his eyes were evasive, secretive, and vague.
My daughter had an AVT for being hearing impaired. This lady would visit every month to discuss matters concerning a deaf child. One day she said to me “I am not worried about Isabella. But I am worried about Isaac. In the 10 months I have seen Bella Isaac has not made any developmental progress at all.” She made an appointment with me to go to our local SEDU. This visit resulted in Isaac attending the centre twice a week. No diagnosis was discussed; no one suggested I take him to be assessed. He was just placed there. Every morning he would hold onto their green gates and scream and claw me. He didn’t want to be there and would wet his pants as I carried him inside. It broke my heart and I felt I was placing my little boy into an institution. The children there did not seem to be like Isaac. The teachers were stretched beyond their means. Many times I’d arrive to pick him up in wet pants and he wouldn’t have touched his food for the day. He didn’t want to be there. After speaking to a teacher there I decided to withdrawl him from the centre. She did not agree but after she had told me Isaac ‘needed a brain scan as he day dreamed too much and this was not normal behaviour’ (As far as I was concerned none of the children there had normal behaviour anyway !) I knew this was not the right place for him. And discharged him. I now understand she meant an EEG – not brain scan as she put it. Then weeks later I was talking to my very best friend about Isaac and laughing as I relayed his obsession with straight surfaces. And told her “how a blade of grass amuses him for so long, he is so placid, so patient . . .” She was very brave and told me she thought Isaac could have Aspergers syndrome. I’d never heard of it but listened to her anyway.
The next day I bought a book on it and quickly read the “symptoms”. . . And cried . . . the manager at Dymocks that day must have thought I’d lost the plot as I paid for the book and could not stop my tears. I didn’t know if this is what he had, but I knew it was close. I’d almost ticked everything but speech before I’d even left the shop!! I made an appointment with our paediatrician and as I gave him the list I’d written out with everything I’d noticed with Isaac in the past three weeks (and years) he stopped and watched him. I looked too and saw my little boy go from object to object. Medical display to display. In the forty minutes I was there I noticed how he did not even acknowledge the doctor. “Isaac is not Aspergers. He has Autism Lisa” I looked at the doctor and said “What”? I thought our paediatrician had lost his marbles. Autistic kids were not like Isaac. He loved me. They didn’t love. They didn’t know anything – he did . . . I was so confused. I rang all my family in Sydney and cried and cried and cried. I looked at Isaac that afternoon and knew that I needed to find something – anything. And in the next three days I found AEIOU. I met with Diane and Debbie. And still was very unsure Isaac was autistic. Isaac on the other hand blended in to the centre. He did not cry. He did not claw. He walked in and if you had not have known it you would’ve thought he had been going there for months. I was still unsure but he was not! I still remember looking at him and thinking – Isaac is autistic – surely not him - As he played in the sand pit ALONE even though there were three other children close to him. Looking at these children and their behaviour and their eyes I noticed a resemblance. It was strange – not physical so to speak but something all in common here. . I think it was that first meeting at AEIOU that I took my first real accepting steps toward the ‘A’ word. It did take me months though to accept and understand. And I only did this with the help and support of Dianne, Debbie, Sandy and Dina. Those four ladies will forever be remembered in our family. They were there when I was at my darkest times, my angriest times and like now, as Isaac graduates some will be there in one of the happiest and proudest moments of Isaac’s and our life.
People have asked me why Isaac took so long to be diagnosed. My husband and I always knew from the age of 2 and half that there was something wrong. I thought Isaac was some way impaired mentally. We never discussed it though. Our daughter has special need as well. She has Turners Syndrome and is also deaf. I remember when Bella was losing her speech and I would comment to people that I thought she couldn’t hear properly. Family, friends even Simon said to me that was impossible – she turned her heard when we called her. I eventually took her to two different ENTs and one did testing and found she was deaf in certain frequencies. The fact I had Bella with her needs and the road it took to diagnose those needs and other medical needs too had eaten away my self esteem and my advocacy in speaking up about Isaac. I think that is why it took me longer to admit Isaacs’ needs. Looking back I should have not worried about being labelled as a mother who wanted ‘something else wrong with her children’. I believed family, friends, even doctors would think I was making things up or exaggerating things. After all, Isaac was a wonderfully well behaved little boy . . . he never did anything wrong because he never did anything!! Today this is Isaac’s last week at AEIOU. I am very sad but also very proud he has been able to attend there. I am grateful to accounts for allowing us payment plans. I am grateful to his dedicated teachers. And to everyone who has donated and supported this foundation. Without it, Isaac would not be the boy he is today. He has great eye contact, (Debbie, a teacher at AEIOU commented how when he first started at the centre he wouldn’t look you in the eyes.) He is very, very literal (mummy look at the lady with the crinkly skin! Or “Daddy I rang you in the afternoon to remind you to get paper ... it was the afternoon because it said 12:01pm”) but can also laugh at situations and stories and get a joke! He likes rules and order in everyday living, He loves doing his maths and reading. He loves phonics. He sounds words out wherever we go now. Street names especially. He loves maps and can show you where Russia is or North America is. He loves North, East, South West and reading our navigator as I drive. He counts backwards from 100. He even had a photo with Santa this year in a busy shopping centre and didn’t lose it!! (He still is a little concerned Santa plans to visit INSIDE our house while we are asleep though, and told that to him as he sat on his knee!) Isaac came to me a few months ago and said “mummy you forget things a lot. I will help you. I have written you a list”. And he hands me paper that has been cut out by him and on it he has written; MILK, BREAD, CONCORDIA T.SHIRT, AND ISAAC.D’S LUNCH BOX “This will help you not forget mummy”. . . Priceless x x
He now looks forward to a future at a mainstream school. Simon and I never thought he would go to one. I was planning on home schooling at one point!! I cannot believe it. We are so proud. So grateful. You cannot imagine the delight that boils inside me as I look at him trying on his school uniform. I know that as he waves goodbye to me on his first day of school – he will need me a little less than yesterday. Some mothers may grieve that their child is growing up. I will not. For this moment will be frozen in time in my mind. Something I have been avoiding thinking about because I was scared. Mainstream school WITHOUT a special learning department ... WITHOUT a class where he is to be segregated from his peers. That is what I had ALWAYS imagined.
This will sound cliché but AEIOU has saved our family. It has saved my sanity. I would never have coped with Autism the way it was before AEIOU. It has given Isaac the very best possible chance to blend into mainstream - into society, because one day he will have to. I will not live forever. One day he will be on his own. Like a house needs a good foundation to be built on to remain strong and sturdy, AEIOU has been Isaac’s foundation, to a beginning, of living a life with autism.
My son is AUTISTIC and that’s okay.
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Please click below to access the latest statement from AEIOU Foundation CEO...From The Media Releases 12th Oct. 2018
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