I remember that Wednesday night when my friend came over...Most of you don't know her, but my friend is by far one of the "strongest" women I know, so I was surprised to see her looking a little lost for a change...
Is everything ok? I asked her, assuming that she probably had a hard day at work or that her part time studying was getting a little too much for her....
She looked at me with a concerned almost "in shock" face and said: I think my nephew is autistic Theodora. And then, there was silence. It was as if she was trying to "digest" what she had just said. I looked at my son playing around us. He is pretty much the same age as Tom.
I knew from her expression that she was dead serious but I am ashamed to admit that although I had heard about autism before and always kept and eye on my kids for the "obvious" signs of autism as they were growing up, I didn't actually know enough about the condition and how it affects a child's life as well as the family around them.
I did my research and to me a child with autism is pretty much this; Always Unique, Totally Interesting, Sometimes Mysterious.
In medical terms, Autism is a disorder of neural development characterized by impaired social interaction and verbal and non-verbal communication, and by restricted, repetitive or stereotyped behavior. The diagnostic criteria require that symptoms become apparent before a child is three years old.
My friend's nephew is a beautiful little boy that is lucky to have been born in one of the most loving and caring families anyone could ever wish for. He has an amazing mother who has dedicated her life in making her son's life as easy as possible, an incredible older sister who has all the time in the world for him, a father that works hard without ever wiping that big smile off his face, supportive grandparents and aunties.
April is the month for autism awareness so when I kindly asked from this amazing woman to shed some light on Autism for our readers, she kindly took time out of her busy life to share her story with us...
From the bottom of my heart, I would like to thank and express my admiration and respect to her for the amazing job she has been doing...and also wish little Tom a very happy birthday...
Here is just a small part of their journey with Autism so far;
"Sitting in a cafe enjoying my coffee and some "alone" time, I see a young mum and a little girl walk past and they are dressed in blue and the little girl is holding a blue balloon which says 'World Autism Day and has the Autism logo on it. This is enough for tears to well in my eyes and think of where we were approximately 3 years ago. Today is world Autism day and I am also dressed in blue in honor of what we celebrate.
Our young son Tom was born on the 27th April 2009 after what seemed a very long wait for me. I had been admitted to hospital approximately 8 weeks before (12th March 2009) after suffering a massive bleed at approximately 7.00 am on that morning. I was rushed to hospital by ambulance and underwent a lot of scans and being hooked onto monitors for hours. What followed was 2 blood transfusions for the blood I had lost, constant monitoring of myself and my unborn baby and a lot of worry as to what happened, why and if everything was going to be ok.
I was told that I was not able to return home until my baby was born, and that could be at any time or it may not be until full term. They could not explain the bleed (apparently not even the specialists could and till this day I am a special case which is being used as training in obstetrics and midwifery students. So began a long nearly 8 week stay in a private room at the Ashford Hospital for myself. A very long, emotional and scary time for me. My young then 6 year old daughter was being cared for by my parents during the week and my loving husband on the weekends.
The day arrived and I was booked into surgery for a Caesarian section at 2pm on Monday 27th April. The time could not come quick enough. I was so excited and scared at the same time as I didn't know what was ahead. I had been told that they could not guarantee that once my baby was born all would be ok, apparently this bleed could have occurred again and I faced the prospect of having a hysterectomy once the baby had been born. Thank goodness all went well and I still have all my bits and pieces.
We were all so ecstatic and after 6 days headed home to start our life again as a normal family. The happiness only lasted 5 days as baby Tom was loosing weight and was admitted to hospital again for 13 days with an infection. He had numerous scans and ultrasounds while his body fought off the infection which had taken its toll on all the family. We took our little boy home after this hospital stay and began trying to be a normal family again.
All was well for the next 9-10 months and then I began to see that my little treasure which I had spent many nights talking to and crying to in those 8 weeks of hospital just him in my tummy and me was not developing like other little boys and girls. He was a beautiful and placid little boy who was happy all the time and had stolen my heart with how much of a good baby he was. I sat and thought and compared him to my daughter who at the same age was rolling, sitting on her bottom, reaching for toys and playing with them, making baby noises and being a baby. Our little boy was not doing hardly any of these things and I was now starting to think perhaps something is wrong. I voiced my concerns to my husband and of course my immediate family who were all of the same opinion that he may just be a late developer and boys and girls are different and assured me all would be ok. I continued with my daily duties of being a mum, wife,daughter etc but as each day passed I would be constantly worried and doubting that all was not well.
I made an appointment with my local Child and Youth health office and went in for a regular health check for my little boy who was now approaching one year old. He was growing well and normal for his weight and height, but I did mention my concerns to the nurse who assured me all seemed ok but like my family voiced perhaps he was a little delayed with his development. I was not 100% convinced and therefore asked her to refer us to a specialist who could assess my son. We then started to have a lot of appointments with Child and Youth health, physiotherapists, feeding specialists, hearing tests, developmental and physical testing and lots more doctors in the next 12 or so months.
I also stopped working part time during this time. My job as a receptionist was a job share position. I worked two full days Thursday and Friday from 8.30am to 5.00pm and the other lady worked Monday, Tuesday and Wednesday full days. It was very hard to juggle work together with doctor's appointments. When you are waiting for a specialist appointment and it happens to be on one of the two days you are working you automatically say to yourself I will swap my day with the other receptionist. We were both fine with doing this but the boss did not share our enthusiasm and always made me feel like crap as to why this was occurring on a regular basis ??? Yes, she did not have any kids of her own is the answer and could not understand that my child and his needs come before her job therefore I quit in July 2011 to be a full time mum to my children and have not looked back since. I do miss working part time and it is something that I would like to start working again but not until I know that my child is ok for this to occur. (I will speak of this again further down)
It was November 6th 2011 (our wedding anniversary) when after all these tests and programs we were finally having our appointment to discuss our son with the Child Development Unit at the Women's and Children's Hospital. We went to our meeting knowing that today we would get some answers to our questions and were preparing ourselves mentally for what could be wrong with our son.
The diagnosis was 'AUTISM'. Although we knew that something was wrong when I was told the diagnosis all I could do was cry and hold my husband really tightly and wipe the tears from my eyes. The doctors were all fabulous and talked us through their findings and offered their support, answered our questions and made it a little easier to understand but I guess at the end of the day, they go home to their own families and we continue on with our lives in our family unit.
It was a very overwhelming time in our lives and it was really scary for me in particular because from the moment we received the diagnosis I guess it is human nature and motherly instinct to think of all the bad and horrible things I had read and was being told and thinking of my child's life not just at that precise time and moment but what did the future hold 10-20 years down the track for my child. This feeling and mindset definitely needed to change - I just needed to be able to firstly sit and take it all in and I guess grieve for all the fantastic dreams and aspirations each parent has for their child but also on the other hand celebrate all the beautiful and wonderful things my child had and continues to do each day.
Where to from the diagnosis till now..
We were signed up through Autism SA for help with issues relating to our son's diagnosis. I cannot say that I have been happy with Autism SA as an organization. Our association with them has been very minimal. I have attended a few one day courses there but I cannot seriously say that they taught me anything that I could have googled on the computer. They charge astronomically high for their speech and Occupational Therapy sessions. This is why we opted to try out the five free sessions that they offered but were not happy and therefore see a private speech therapist weekly since the diagnosis to assist Tom.
At the time of Tom's diagnosis, children on the Autism spectrum received funding from the time they are diagnosed till they are 6 years old. What amount of money are we taking about? An amount of $12,000 which although may seem a lot is a very small contribution to day to day life. This amount sits in a kitty and everytime you see a therapist the amount is deducted from this amount.
As an example if your child sees a speech therapist each week (our speechy currently charges $129 per 45 minute session once a week - 52 weeks at $129.00 per week works out to an amount of $6708 per year. So in Tom's case he was diagnosed at 2 years and 7 months - and this money of $12,000 needs to last until he is 6 years old (anybody doing the math can definitely work out that after say the first two years that this money has finished. Then you pay out of your own pocket with no help from anywhere else).
I researched a lot into what programs were available for children with Autism. What did I find? Not much at all. Tom was very lucky after approximately a 6 month waiting list to be able to enter Daphne Street Autism Early Learning Centre which are based at Prospect. He attended there every Monday, Wednesday and Friday from 9am to 2.30pm, for approximately 18 months. Cost is $78.00 each day and we are lucky that Child Care Benefit pays a small amount of this fee but the rest we pay out of our pocket weekly.
It's a fantastic program which Tom enjoys immensely. Staff are all qualified to work with children with Autism, speech therapists and Occupational Therapists. Class sizes are small, maximum 8 children in each class so therefore much more one on one time with each child. Tom still attends this program on Monday and Wednesday now and will continue to do so until January next year when it will be time for him to move onto school.
Tom now attends Glandore Kindergarten on Tuesdays and Thursdays and every alternate Friday. He has fitted in really well and enjoys his time there but he does have a SSO (student support officer) working with him at all times. He is picked up early at 1pm on these days as it becomes a very long and overwhelming day for him. He needs constant prompting and guidance but he is doing well.
Our home life is pretty much as normal as we make it. It is definitely challenging to say the least. Tom's developmental age I would say is between 2/3 years of age therefore he cannot feed himself unaided. He needs lots of help with toileting (still in nappies) dressing, playing etc. he has no concept of danger and therefore cannot be left alone as he may get hurt if not supervised. Everything needs to be put up high or not in sight so he cannot reach it. He is a good sleeper (once he falls asleep which can range from 9 to 11pm each night). Eating can be challenging also; Tom had issues with gagging/vomiting until approximately 3 years of age.
Getting ready for school?
Adelaide is the only state without an Autism Specific School. This is the most frustrating thing on my mind at the present time. Where am I as a parent supposed to send my child to school to reach his full potential in learning? Can I send him to a mainstream school? A special unit within a mainstream school? A special school with other children with Autism or other developmental or physical disabilities?
Well, the answer is as follows. I can go and look at a school but until approximately June/July of this year when a Psychologist from DECS (department of education and children's services) visits both Glandore Kindergarten and Daphne Street early learning centre to assess Tom and what they think he needs in the way of schooling we cannot decide. The psychologist will decide what support he needs and what setting would best suit him and they will offer us the best solution we hope.
Tom is a wonderful little boy that makes us all very proud. Every time he meets a milestone, he gives us so much joy and strength to continue and makes us realise that it's the little things in life that make it so beautiful..
We love you Tom