The first month after receiving a diagnosis of AUTISM passed in a blur of raw tears, increasing anger and endless questions. To the outside world it was business as usual, however for us it was a life-changing moment that would go on to dominate the next decade of our lives. How could this be happening? What are we dealing with? Will Mitchell ever be able to live a ‘normal life’? Will we? What the hell IS autism anyway? Did I cause this? Where did autism come from – the mother or the father? Is there a cure? This wasn’t what having a family was supposed to be like!
We thought that after an official diagnosis that we would be swamped with people offering to help us; professionals and support workers and teachers and guides. Yes? Oh no. Nothing. Nothing at all for days, weeks…months. In fact, it took us 8 LONG MONTHS before we had our referral to the child development unit answered. 8 months with no one to talk to and to put us on the right path. No one to help ease the pain and the heartache. No one to suggest strategies to ease the daily struggles. No one to help Anthony and I make sense of this madness. No one to take away the pain and the anger and the feeling of being totally shell-shocked.
I spent every night of that first month on the computer, looking for answers and clues to guide us forward. There were literally thousands of web pages that mentioned autism but for as many positive and uplifting sites there were an equal number of negative and despairing pages that took away all feelings of hope; and an unsettling number of snake oil salesman willing to sell a cure. I will always remember reading on an American site about a ridiculously expensive mud product that supposedly would take out all the poisons in a person’s body and cure them of all autism symptoms. It was an awful hit-and-miss way to learn about autism and left us more unsure about what we were dealing with.
The daily nightmare of feeding, bathing, playing, dressing, talking and sleeping for Mitchell continued to grow worse; and by the time he turned three he had no ability to talk at all. I cannot describe in words the absolute sadness I felt at not being able to hear my child’s voice on his 3rd birthday. It tore my heart out to watch him disappear under a cloud of autism. Our days at home were now filled with screaming and kicking and refusal and anxiety over everything; and as Mitchell’s mother I was miserable and stressed too. Scarier still, I was now only 6 weeks away from having our second child – another boy. How would we manage? Would he be autistic too?
The time has come to put my thoughts down on paper…well onto keyboard really. Ten years plus of life experience with so much to share about my little family and our life with the AUTISM SPECTRUM. Our official 5th member!
Join me as I try to relate to you what I have learned so far and why I feel I still have so much more to learn on this journey. It’s only just begun…
September 2005 brought our second little boy, Dylan, into the world. He arrived after only 4 hours of labour which was very different to the lengthy 32 hours I had with his elder brother! Dylan was healthy and gorgeous and I absolutely fell in love with him instantly, as I had similarly done with Mitchell three years earlier. After a couple of days in hospital I was eager to settle down at home with my now complete family.
In the comfort of home, Mitchell was inquisitive about our newest addition and watched as nappies were changed and feedings were due; however after only a few days his interest changed dramatically when it became clear that sleep times were not going to be easy for his little brother. Mitchell started to keep away because he knew that as soon as sleep time was due his brother would begin to scream. And boy did he scream! It would go on for hours and nothing I did seemed to help ease his pain. I tried rubbing and patting Dylan’s back as I carried him endlessly around the house. I tried pushing him in his pram and running it over a towel. I tried lying him in a warm bath or putting a warm cloth over his belly. I tried everything I could think of to calm him but nothing worked.
Dylan would begin screaming half an hour after EVERY feed and would continue until about 30 minutes before his next feed, only managing to nap between episodes for a short time. My poor husband was greeted after work each day by two upset children and a tired, emotionally fragile wife who would hand over parenting duties gladly for a few hours of much needed rest. Our days would end in exhaustion at about 1am when Dylan would finally sleep until about 5am, when the entire process would then begin again…After almost a week and no change in Dylan’s condition, we took him to see a doctor, only to be told it was colic and not to worry about it!
Days passed and Anthony and I did our very best to manage but as the days became weeks it just got too hard. We never had a meal together, never slept at the same times, never talked about anything other than Dylan and became totally and utterly exhausted as we took round-the-clock shifts to care for our new baby. I think we both felt like complete failures as the rosy glow of parenthood quickly dissolved away. What have we done? How can we survive this?
The carefree days of a toddler are something remarkably special in a child’s life. To eat what you like, sleep when you like, laugh, play and run; each day a new adventure filled with sunshine and smiles. I enjoyed those magical months when I grew to understand the love that a mother can have for her child. Mitchell was mine and forever a part of me. He was special and together we spent our days visiting mother’s groups, playgrounds and enjoying a weekly music class. Slowly he found his independence and began to speak a few short words, “Mum”, “Dad”, “dog” while pushing along on his tricycle before dashing off down into the backyard to jump on his swing or dive into his sandpit. Great days…
Then, just after he turned 2.5 years old things changed forever. He was lost for words. They disappeared just like that! Gone were the attempts to chat with Dad, Mum or anyone. All we got was silence – and all I got from the hospital appointments was “he’s just a boy, they take longer to develop speech” and “stop worrying, you’re just being a neurotic first-time mother”. It wasn’t right and part of me knew that I should be worried but it wasn’t until a few months later when he became overly sensitive to EVERYTHING that I knew I was right to push more for answers. What was going on?
Our once happy boy left us and we were left with a child that now hated most foods, refused to bath or shower, couldn’t tolerate shoes, screamed like a wild animal when having his hair or teeth brushed, didn’t sleep…the list went on. It was an endless nightmare of tears and screaming from morning till night. Where had Mitchell gone?Why was this happening? Am I doing something wrong? Is he sick?
I made an appointment to take Mitchell to see a pediatrician; Anthony and I needed answers. How unprepared we were that day for what we were about to be told after a 40 minute consultation. “I think your child has Autism. I’ll refer him to the Child Development Unit for further assessment” she said so matter-of-factly. “I don’t believe in blood tests or those funny diets, just take him home and love him”…and that was it!
I still remember leaving the appointment and getting back into the car that day as if it happened 5 minutes ago. Mitchell strapped into his seat, oblivious as to why Mummy and Daddy were in a total state of shock and tears sitting in the front, unable to turn the key to drive home. We were numb with fear and pain and a future suddenly uncertain. What the hell did she mean, ‘take him home and love him’? We had a child that we couldn’t keep happy for longer than a few minutes, that was frightened and sensitive to everything in his day. What were we to do?
Autism? He can’t have that! He’s not sitting in the corner rocking. And he used to like being kissed and cuddled. I knew so little about what it was but had already decided it was something negative to be feared and demonized. How would we cope?
The first year after Mitchell’s birth disappeared in a blur of feeds, nappy changes and broken sleep. We found ourselves in a daily routine and comfortable with the normality of family life. He seemed to be growing as expected and meeting all the developmental milestones listed in the little red book they gave us when we left the hospital. He was a happy, smiley baby and brought us a great deal of joy. I still remember him sucking contentedly on his milk bottle, lying in his cot until he would reach the very last drop. Then all of a sudden he would throw the empty bottle like a javelin out of the cot and it would crash onto the tiles below – crash!
Time went by and we celebrated his first birthday with a family party. Friends and relatives from around the town joined us to mark this very special occasion. A new sandpit, in the shape of a clam shell, had been installed out back into which Mitchell plonked his chubby body. Moving his little fingers around in the clean, cool sand he discovered that eating this yellow stuff was not particularly tasty! Eww…but home made chocolate birthday cake with candles was much more to his liking.
When Mitchell was about 15 months old, he suddenly got very sick. He began to vomit and have nasty runny nappies and was generally very unhappy. Of course Anthony and I were very concerned and not really knowing about these things took him to see a doctor. We were told to give him a course of antibiotics and monitor his recovery. After the second course of medication it had been established that Mitchell was ill because of gecko poo! What, I hear you ask? Gecko poo? It seems that one of the hazards of living in this tropical climate is that small, white, energetic geckos climb over everything in your house; and in our particular case they had managed to climb over all of Mitchell’s baby feeding bottles that were left to dry in our kitchen. He had then ingested some of the bacteria which they carry and that had made him sick. Two weeks of sickness and two rounds of antibiotics later – didn’t we feel terrible as parents for not knowing about such things!
Months passed and developmentally things seemed to be on track. He quickly changed from a helpless little baby into an energetic, inquisitive toddler and I soon lost any weight that I had been carrying from his birth, as I followed him round and round our little house for endless hours every day. The scoot became a crawl, the crawl turned into climbing up and holding on and eventually he learned to walk. I was worried about him falling and crashing onto the tiles but he seemed to innately sense how to go about this feat of nature. The first time he managed to walk from the lounge chair to Dad unaided was an amazing day. His independence had begun…
Mitchell was born in October of 2002, after a normal healthy first-time pregnancy. I was not a smoker and I gave up alcohol as soon as I discovered I was pregnant. I walked around my suburb every day to keep fit and I took folate tablets as the doctor prescribed. At the age of 29 I was excited (and nervous) at the thought of being responsible for another human being. Everything seemed to be just as it should be.
My husband, Anthony, and I did everything we could to prepare for this life-changing event. We read books, checked websites, made lists of names and lived on one income for a full 12 months so that we could get used to life with only one salary for a time. We asked each other about our families and whether there were any health issues or concerns to worry about. Nothing.
Fast forward now to those first few months of life with a baby and my, how our life had changed. Discussions now were all about feeding and sleep times and poop! My boobs always hurt and I was miserable because breast feeding just wasn’t easy at all for me. I never realised that it was going to be difficult to do. I just thought you whipped out a breast and stuck the baby on it! How wrong I was.
Not long after I gave in and began using a breast pump. I can still remember sitting up in the middle of the night, tired and angry at having to listen to the sound of a machine doing what I thought my body would do naturally. I was sad that I couldn’t enjoy that special bond between mother and child and felt like a failure. It was tough but, at least Mitchell was getting the benefit, so I persisted each day for four long months. I couldn’t wait until it was over.
The days and nights became a routine of feeding, nappy changes and sleep deprivation but it was what we expected so the journey felt normal; although we were the first of our friends to have children so I’m sure it was all a bit bizarre for them. They were still enjoying living it up and searching for someone to share their lives with. For us, it was about Mitchell now.
Mitchell grew and developed as expected and we loved having him as part of our family. Every week he seemed to pass another milestone as he grew more into our hearts and minds. My husband and I began to find comfort and ease with our new roles as parents and the love we had for each other had deepened immensely. It’s true what they say, parenthood really does change you!
I look back now and realise that those first 12 months were epic. We had made the decision to change our lives forever. Little did we know then just how much change was to come…