For a while now, we have known something, something big. Something that has changed our lives, but something that we have kept a secret from most…until now.
From the moment we found out we were expecting our first child, our lives were changed forever. This little innocent child that would come into the world would teach us so much about life, about love, about ourselves and about the world. The moment he was here, it was thrilling. Everything we were told to expect flew out the window and the room was almost silent. This perfect, tiny baby was ours to love no matter what.
Our son was a perfect baby. He slept through the night from 8 weeks old, he ate perfectly, he was healthy and happy.
We had a health scare with him, but it was well monitored and had subsided. What more could we ask for? From an early age, a lot of people noticed how beautiful his speech was. He spoke early and so clearly. He was extremely clever. He reached all his physical milestones well within the ‘expected’ time-frame.
We found out we were expecting our 2nd child when he was 16 months old. While it was daunting, we were excited thinking of how wonderful it would be for him to have a sibling close in age with him. It was that ‘perfect’ 2 year age gap.
When our 2nd son was born, something changed. Well, lots of things did, but this was something more concerning.
Our first son began sleeping less…a lot less. It would take us hours and hours, sometimes until almost 3 am to get him to go to sleep. He began throwing tantrums and appearing frustrated. He did just turn 2 though so was it just the start of the ‘terrible twos’ we have all heard of? Was it the arrival of his baby brother? Was it the fact that we were living with my parents at the time? We tried not to worry because, after all, there was a lot of changes happening for our little boy.
But the tantrums became more frequent. His health was generally perfect, however he did have a kidney problem that he had at birth, so I began trying to get further answers about that to make sure the problem hadn’t worsened and was effecting his behavior. We watched countless episodes of Super Nanny and I was always googling this and that trying to figure out how to cope with things. He was still a fantastic little boy and was obviously spirited and very clever, so he needed lots to do. While trying to recover from a c-section and some health problems of my own, looking after a newborn, my husband having a lot of time off work and living with my parents, I felt like I was probably just going through a lot. Maybe it was me who had the problem and I was just not coping with my son’s new-found energy.
We moved into our own house when our 2nd son was 4 months old. I thought maybe it would help things, having more space, being close to family and having a big yard to run and play in. I knew it could take some time to re-adjust again so we monitored things for a while. But the behavior was getting harder and harder to deal with. It wasn’t just tantrums, it was much more than that. He could recite entire movie scripts, he could reenact scenes perfectly. That’s not a problem, right? It was hilarious actually. We could see we had a very bright boy on our hands. Everyone could see it. We often got advice like – “he just needs more stimulation” and “don’t worry, all kids behave like that at this age”. But trying to describe exactly how things were at home, was so difficult. I knew it was more than just the terrible twos.
I remember in his 3rd year of life, things began to escalate even more. It went well beyond a tantrum here and there. He wouldn’t look at you in the eyes when you spoke to him. He seemed to be in his own little world. He was so obsessed with certain characters that he would be upset if you didn’t call him ‘Woody” for the day. He began to make huge amounts of mess.
He would go into the cupboards, take food and hide it, throw eggs at the walls, eat sugar by the handfuls, throw curry powder all over the kitchen. Sounds like a 3-year-old right? People said “lock the cupboards”, “keep him out of the kitchen”. We tried every kind of lock there was. We even put a combination padlock on our freezer, which he figured out! We had padlocks on the gates outside, we had to deadlock the doors, we had to hide everything. No matter what we tried, he would find a way into it. He did it in almost complete silence too. People would say “get up when he gets up”, but he would get up at crazy times of the night and day and because he was so quiet, we never heard him. If he didn’t have access to food items, he would make the same kinds of mess with whatever else he could find.
I had a ritual every morning, to go around and check the damage done to the house before I began the day. My days consisted of cleaning paint off the couch, vacuuming up powder that had been thrown all over the lounge room, wiping up food colouring from the floors, scrubbing stains of eggs out of the carpet and washing chocolate off the windows, collecting wrappers from behind his bed. I culled as many toys as I could. I got rid of nic-nacs and I tried to have a minimalist approach to our home. Everything had a place so that I could easily tell what was missing or what was damaged. All the colouring stuff, paints, play doh etc was locked away and only brought out when necessary. Still, it was so hard to explain to people just how hard things were at home.
When we went out or he was at kinder, he was generally perfect.
He was a “delight” to have in the classroom or at friends houses. He was gentle with other kids, he always played nicely shared things well. He LOVED to learn new things. At 3-year-old kinder, he was constantly busy. But he would walk into the room filled with children and almost not even notice they were there. In a smaller environment, like a play date, he was ok, but in a big group, he just seemed to be so focused on his task that he didn’t really care to engage with the other kids. Of course this wasn’t the case all of the time, but it was something I noticed straight away. We saw a pediatrician who said that he couldn’t see enough to say anything needed to be done but to come back in a year or so.
Approaching 4-year-old kinder, I was relieved that there would be somewhere he could go that would give him enough to do, that there would be things to occupy him for the full 5 hours he was there. That was more than I could give him at home and he needed the challenge. His 4-year-old year for us was by far, the most difficult. The ‘terrible twos’ never ended but escalated into something we never could have expected. Our younger son was at an age where he could join in with the mess-making. My work-load doubled and I felt like I was drowning. Our younger son had his own health problems also and so it became a juggling act between the both of them! I was filled with self-doubt. Was it just me? Was I a pathetic mother who just couldn’t handle her own child? Was it the way I parented that caused this? Had we moved too often? I knew I had given everything I could and yet it still wasn’t good enough. I was desperately lonely in my journey through this. Even my husband didn’t see it like I did at the time. While I saw my friends take their children on holidays and long days out, they were things I feared because of how he would cope. When we had visitors, he would be so hyperactive and do things that filled me with embarrassment and concern for him that if he continued to behave this way, nobody would want to be his friend. I would cry myself to sleep at night, thinking of all the troubles he would have if things kept going on like this. I cried feeling like he would grow to hate me because I was always anxious, upset, angry, frustrated.
I was also worried that still by 4, he wasn’t toilet trained. We had tried constantly since he was 2 years old and had hardly any success. I went to countless doctors, asking to see specialists.
We saw pediatricians, we went to the Children’s hospital, we did everything we could. But none of them thought there was enough going on to warrant any real treatment. We were told he had toddlers diarrhea, which he should have grown out of by around 4. But it never happened. He was also sick with his kidney problems and so the behavioral stuff got put on the back burner as I wanted to rule out EVERY medical issue I could before I went down that path. After numerous hospital trips, I finally found a doctor who took us seriously and went back through his medical records and found that he in fact had severe kidney re-flux that should have been corrected surgically when he was a newborn. He had surgery to fix it and just like that – he could go to the toilet on his own! All this time, he couldn’t feel when he needed to go! We were so relieved. Although it didn’t fix his bowel problem, which caused daily accidents at home.
He flew through 4-year-old kinder and was well and truly ready for school. Contrary to some who gave us the whole “hold him back” speech, his teachers and the school encouraged us by saying he was well and truly ready and that for a boy like him, repeating 4-year-old kinder wouldn’t help him at all. He would be too bored and his behavior may worsen. How thankful I am that we listened to that advice.
Before starting school, we could see he was really growing up. He had narrowed down his interests into one really specific thing; Lego, Lego and more Lego. His eyes would light up when he got a new set. It would occupy him for hours. Suddenly, he had something really specific to talk to us about. Not just rattling off lines from movies, but really having meaningful conversations.
When he started school, it was like his world opened up to a huge amount of possibility. He made friends, he was happier, he was gaining confidence and he was stretched intellectually, so he was actually TIRED each day! He started sleeping better and he was so determined to learn. His reading and writing came along so fast and he would talk and talk about all the clubs he joined. His behavior at home began to settle a little too.
I was frantically trying to find a doctor who would help us fix his bowel problem before he had an accident at school. I found someone, but still, there wasn’t much we could do. By this stage, I took him back to the pediatrician we saw during 3-year-old kinder to see whether he thought there may be a behavioral problem there. Still, because he was SO smart and his speech was advanced, his fine and gross motor skills were fine and he didn’t have any ‘obvious’ issues, they said just to wait and see again. I did some more investigating and some online quiz’s. I found a psychologist who was willing to hear me out. The day I let it all out to her, she was the first person to really say to me that what was happening definitely wasn’t “normal”. I remember the overwhelming sense of relief, knowing that i had finally found someone who listened and someone who acknowledged that things must have been really hard for us. It did take a couple of sessions for her to really see that there probably was something else there. After 3 appointments, she offered to do a full assessment for him.
We awaited the results anxiously. She went through them and it almost seemed like the room had gone fuzzy. There were so many parts to it. So many factors involved. And there it was…the 4 words that changed everything…”your son has autism”.
What a whirlwind of emotion it was to hear that. Ok, I thought, this is ok. Now we know. Now we can get the RIGHT help that he needs. Now I know I wasn’t crazy. But what now?!
I began to get all the paperwork we needed to apply for the funding for school. Once it was approved, the school jumped right on board. We now had resources to help him succeed. We saw a speech therapist who went through some social cues with him – that’s why he doesn’t look at us in the eye when he speaks to us. We saw an occupational therapist who tried to help with the bowel problems and who helped figure out that it’s ok that he twists blu-tack in his fingers when the teacher is talking – that’s how he pays attention. We saw a psychologist who gave us strategies to help when he has a big meltdown – which is why now they are a lot less frequent and they don’t always last as long.
Probably the best part was that earlier this year, I demanded to see a pediatric surgeon regarding his bowel issues. During the appointment, his behavior was terrible. I was sweating, I was breathless trying to keep him under control while trying to desperately plead with her to do something for him. At the end of the appointment we had a date for surgery booked. 2 weeks before the surgery was due, out of nowhere, he began using his bowels perfectly. He didn’t have a single accident and he was actually using the toilet. We were able to cancel the surgery. We went to a follow-up appointment with her and she agreed…it was just a miracle. There was no way to explain why all of a sudden, at almost 6 and a half years old, he was now competently using the toilet on his own.
So why did I wait to tell anyone? Why have I kept this a secret? Honestly, I was afraid. I was afraid of the label. I was afraid of the judgement, the misunderstandings, the pointing of fingers. I was afraid for him, that knowing this would cause people to treat him differently, to treat him as weird or less of a person than the other kids. I was afraid of him being excluded or teased.
But it’s time to tell you all. I hope by telling you, that you can become aware of how you can help him, how you can help us.
That it helps you become sensitive and accepting of other children. That by knowing, it inspires you to learn about it and pass it on to others. That by learning, you can be more understanding of the parents you see struggling with their child in public; they may be dealing with more than you know. And most of all, that you can embrace our son and any other people you may know or come across with any form of special needs.
Try to think beyond the immediate reaction you may have to a situation.
He will talk to you about things you may not be interested in – he’s trying to engage with you, so at least act like you’re interested. He may be acting silly in a place that requires him to be still – he is out of his comfort zone and trying to process it, which is sometimes too much; be patient with him. He may not speak to you at all and may not even want to come out and say hello – give him the space he needs, he will come out when his insides are not trying to pull him in a million directions at once. He may be running around like a headless chook – he is probably over-stimulated and if it’s too much for you, let us know and we will help.
There is nothing wrong with our son. He just processes and learns things differently to you and I.
Be patient, be understanding, get educated. Know that we are doing the very best we can. That some days we will be exhausted, we may not be as bright as usual, we may need to leave early or arrive late…please be patient with us too.
We are not ashamed. We are so proud of our son. He is smart, he is kind, he is funny, he is talented, he is just as imperfect as the rest of us.
But he is perfectly himself.
Nicole is 29, married, a mother to 3 boistress boys and blogger. Through her blog, she hopes to reach out to mums and show them the reality of life as a parent – a no filtered approach. She hopes that through her writing, she can reach parents on a real level, help them through the hard times and make them laugh a little along the way. With a strong focus on special needs, she is working to educate others on the importance of inclusion, acceptance and understanding.
You can read more from Nicole via her website here