On the Road with Daniel (part 2 of Waiting for Daniel)
By Cas and Wayne McCullough

Originally Published in Natural Parenting Magazine, Summer 2006/07.

We can’t understand our son Daniel, but he talks to us in a thousand different ways. The way he runs to his father when he comes home from work, and the way that he snuggles up to us when the hard play of the day is done, or the way that he cheekily looks back at us just before he tears off up the road, ignoring our plaintive cries of “Daniel Stop!”, and “Daniel Wait!”.  We can’t understand our son, but we love him all the same.

Our three year old son Daniel is Autistic. We only discovered this recently, and the journey has been one of huge ups and downs for us emotionally and physically. We have sobbed out our grief and rejoiced at his little accomplishments – accomplishments which our third son Adam, nearly two years Daniel’s junior, has mastered with ease, but which Daniel has struggled with every day.

For a long time we didn’t know that Daniel was autistic. For a long time we simply thought his speech was slow to develop (see “Waiting for Daniel” in the 2006 Spring Issue of Natural Parenting Magazine), but slowly over time we came to accept that something was wrong, and sought various professional opinions about what it might be.

The first paediatrician we saw basically thought we were making it all up. He didn’t say it in so many words, but his opinion was that there was nothing wrong with Daniel and that we were just permissive parents who weren’t disciplining our son.

Of course that was his opinion from a 15 minute consultation. He didn’t see Daniel collapse into an almost catatonic state when we disciplined him. He didn’t see the way he acted when he mixed with other children his age – the almost frightened animal look – the fight or flight response as others eyed off his toys or entered his space. He didn’t see the way Daniel reacted when we went out for a walk, the shear terror on our faces as he took a bearing on the furthest item on the horizon and then just took off with no compunction about running across roads, or through gardens or whatever obstacle happened to be in his way.  He didn’t see Daniel the way we saw him. All he saw was a little boy who sat on the floor and played nicely for 15 minutes – the quietest 15 minutes of the week as it happened!  He gave his opinion, charged us exorbitantly for his “expert summary”, and waved us out of his life and his office with no thought for the impact on us.

And the impact was huge. I started to question my parenting and wondered if I had made a grave mistake in following the attachment parenting philosophy. I also felt guilty for flying off the handle when I just couldn’t bear it any more and sunk into a deep depression. Thoughts of failure and of hopelessness were never very far away and as Daniel’s behaviour escalated I wondered if we’d ever see the end of this “stage”. When would he become just a “normal” three year old?

We had to get back on the path to finding some answers and so on the advice of a friend we contacted the Therapy and Support Service for Children, a publicly available service through community health.

The speech therapist told us that Daniel had a profound speech delay and recommended we get an appointment with the Mater Children’s Hospital Child Development Clinic (a publicly available service for children with complex behavioural and developmental problems). Although it was hard to hear that my son’s problems were more than just a passing stage I was relieved that we were being taken seriously and seemed to be making progress. I also felt angry at myself for not having done something about it sooner.

Now that we were on the path to seeking a diagnosis, we started to feel a sense of urgency about getting access to services to help get Daniel’s needs met. Safety was a huge issue for us. Walks to school were getting more and more hazardous and Daniel had escaped our backyard one day and run across a busy road without even looking. We were very blessed that a woman saw him and where he had come from. I nearly passed out when she told me what he had done. On another occasion he climbed a friend’s pool fence in the middle of winter and jumped in the pool to retrieve a toy he’d thrown in there.

In the weeks following that first appointment we started to take more notice of Daniel’s behavioural patterns. Loud sudden noises like yelling and machinery seemed to intensely unnerve him. When either of his brothers or any other child came too close to him unexpectedly or tried to play with him, he’d immediately see it as a threat and push them away. If we were in amongst a large crowd Daniel’s behaviour was worse than if we were in a small group of familiar people. It was as if he just couldn’t cope with the excess sensory stimulation.

As we began to notice his little idiosyncrasies we started to see the beauty of his world. When he got excited he’d run around flapping like a bird and when something took his interest he would cock his head to one side like when a dog takes note of an approaching stranger. He was fascinated by the most ordinary things….the rough texture of a rock, the ripples on the water when he threw stones in the lake, the feeling of spinning on the swing set, the exhilaration of running with the wind in his face, the squish squish of his shoes when wet. He noticed everything that could be touched but seemingly nothing that could be communicated.

He’d follow the same exact pattern each time we walked to school and if ever the pattern changed it would become the new pattern for many weeks afterwards. Often this would involve jumping in any hole we passed, climbing on every letter box we encountered and my favourite was stopping at a bush and putting a flower in his pocket. If we tried to change the pattern all hell would break loose. It seemed the more we kept things routine for him the more at peace he was.

It was just before we took our family on holiday in the Northern Territory that it became painfully clear to us that Daniel might be Autistic and the trip itself felt like a huge confirmation of our fears. Take offs and landings were met with massive tantrums (because of the noise) and many people shook their heads in disbelief as we struggled to contain Daniel’s behaviour. Friendly tourists would stop to chat with him and looked puzzled when he completely ignored them. It was as if he was a Chinese-speaking person living in France. He just couldn’t speak the language and didn’t understand the social cues that most children his age were beginning to master.

When somebody first mentioned the word Autism to me in connection to Daniel my response was to simply deny the possibility. However, something inside me said: “stop living in denial and start exploring what autism may mean for your son.”

So, we set about researching autism and pretty soon it became very clear to us that Daniel fit most of the diagnostic criteria. It was such a jolt. It just felt like such a permanent label. We didn’t know whether to feel happy there was a possible diagnosis or grieved because of the implications for him and his future. Everything we’d read up to that point indicated that there was no cure, no known cause for many cases and the treatment regime consisting of speech therapy, occupational therapy, physiotherapy etc etc was probably to last a lifetime.

As I was packing to leave for that trip to Darwin, a letter arrived in the mail from the Mater Development Clinic. I thought, “finally we can get an answer” but instead the letter informed us that Daniel’s referral to the clinic had been redirected to the local community health clinic.

It was devastating! We felt like we were right back where we started from. I just didn’t think I could wait another eight months to get some answers (which was how long it would have taken to get another appointment at the local clinic) so I immediately and tearfully jumped on the phone, said I was unhappy with the decision and then sent them a three page letter along with Daniel’s speech pathology report in the hope they would change their minds.

Well it worked! The day we arrived in Darwin the Mater called my mobile and said that because of my letter they were going to see Daniel after all. They offered us an appointment the following month. I was ecstatic. Finally we were getting somewhere.

The day of the appointment came and after an hour and a half of trying to contain Daniel who was switching lights on and off and trying any means to escape the room, the  paediatrician said the words we were dreading to hear: “I think Daniel has an Autistic Spectrum Disorder”.

Accepting the diagnosis was difficult for us. I cried a river of tears and sometimes still do. What was the future to hold for our little boy? Would he ever live an independent life? What will happen to him after we pass on? Will his brothers take care of him? Will our friends and family accept him? We are well aware that some of the answers will not be to our liking and this is a scary thing.

Looking back on the past year and a half, we’ve made quite a journey as a family. We’ve had to abandon our preconceived notions of how children should behave and learn to understand what triggers negative behaviour in Daniel. While parents around us have started to relax a little as their children gain more sense of the world, we’ve had to remain ever vigilant and ever watchful.

We can’t understand Daniel but we are learning as we unlock the doors to his world and he is learning too. Each day brings new hope and new milestones. Each new word and each outing that doesn’t result in me reaching for the bar of chocolate in the fridge is celebrated and remembered and each bad day is patiently endured as much as is possible.

Sometimes we stop and look at the path we’re on and we can’t help but think. “This isn’t fair! Why us? We don’t feel strong enough to deal with this.” That’s how we feel on a day when Daniel has had a major meltdown or someone has made a snide comment about his behaviour they thought we couldn’t hear or someone has made a comment about me as a mother they fully intended for me to hear. It’s all part of the journey but as the old saying goes, what doesn’t kill us makes us stronger…or does it?

What steps have we taken to help Daniel?

Speech Therapy

TASSC also offered me a place in the Hanen Programme. The “It takes two to talk” programme is a language development course for parents of children who speak less than 50 words and the “more than words” programme is for parents of children who have a learning disability such as Autism or Aspergers syndrome. Each course aims to empower parents to implement strategies that help their child communicate.

I found the course invaluable in terms of changing my own communication with Daniel and in terms of meeting with other parents who were struggling with the same difficulties. Half way through the “It takes two” course Daniel was diagnosed so I was able to attend both of the Hanen courses at TASSC so that I could meet other parents who were travelling the same path.

We are now looking at hiring a private Speech Therapist to help us work with Daniel on his language development.

Ideas that have been really helpful include letting your child lead in play (in other words doing what they are interested in rather than setting the agenda for play yourself), observing your child, waiting for them to say something or communicate through eye contact and listening to them actively, repeating what they say to emphasise the words they are using and help establish their vocabulary. We also look at how to play games like a child rather than doing them “properly” like an adult and how to read books by just following their lead in what they are interested in rather than trying to read the story in sequence or even reading the story at all. We were encouraged to make homemade books and buy books that were tactile, had flaps, made of material and had pop ups. We were encouraged to use routines wherever possible and wait before giving the child something to allow our child to take a turn and to always give them a reason to talk. Blowing bubbles is a great way to get your child to learn about taking turns, sitting, and using their words and a great way to teach adults how to observe, wait and actively listen.

Occupational Therapy

Occupational therapy is all about assisting the child to develop concentration and social skills in their occupation—their daily routines, their education and their play. As part of his Occupational Therapy we did a sensory profile on Daniel and it helped shed some more light on how Daniel’s sensory perception was heightened in certain areas. This was helpful information because it meant that we could adjust our routines to help provide a more calming environment for Daniel. Letting go of our adult expectations has been a constant these past few months.

We’ve brainstormed ideas for distractions and routines for the walk to school and we’ve developed a visual schedule for Daniel’s swimming lessons so that he knows exactly what is coming next. The visual schedule is simply pictures of what activity he is to undertake. Each picture is used in conjunction with the words and when the activity is finished Daniel puts it into a “finish box” and moves on to the next activity.

Special Education Developmental Unit

In a couple of weeks time Daniel starts attending a special educational developmental unit which is a publicly available service through Education Queensland. The unit he is going to attend for two mornings a week is attached to a school. At the SEDU his developmental needs will be assessed and the team will make recommendations as to the best course of treatment and therapy for Daniel. He’ll receive group speech, occupational and physiotherapy along with other children between 3 to five years.

Autism Qld

Each State offers Autism support services (See ASPECT’s website for information about services in your State or Territory www.aspect.org.au). In Queensland, Autism Queensland offers services for Autistic people (even adults) as well as support for family members, including mother’s camps, therapist visits to homes and schools, sibling support groups and respite care. Hopefully next year Daniel will get a place at Autism Queensland’s early intervention programme which will be two days a week.

Homeopath and Dietician

After reading about homeopathy and dietary interventions have helped other children we started seeing a homeopath for treatment and that has been a wonderful encouragement in many ways. Since he’s started treatment, Daniel’s concentration has improved and his head banging has reduced markedly. The homeopath recommended we get him off dairy and wheat so I went to a dietician through community health and she worked out a plan for Daniel to start a six week gluten free casein free diet. I had already cut back on dairy and was seeing improvements but his concentration improved further with the absence of gluten. His brothers joined him in the diet for a bit of team support too.

We challenged gluten and it took a few days to kick in but Daniel had a massive meltdown. I’d been keeping track of Daniel’s progress in an online journal and went to write about it when I noticed that I hadn’t recorded anything in the six weeks he was gluten and casein free. That was telling, so he’s now back on a strict GFCF diet again, probably for the rest of his life. We also discovered that Daniel reacts to food chemicals and maybe intolerant to salicylates and amines so we’ll probably challenge them in the next few months.

Medical Tests

What was hard was putting Daniel through a bunch of medical tests to see if there were any underlying causes of his Autistic behaviour. He had not been immunised at all so it was unlikely that there was any mercury poisoning which has been commonly associated with Autism. After his blood test (which took four of us to hold him down) he collapsed on the pavement outside the Children’s hospital and wept. I felt like I had abused my child. The hearing test wasn’t so bad because they just adjusted it to suit his needs and did a puppet show. His hearing is just fine. The EEG was horrible because they asked me to sleep deprive him so they could get an accurate reading of his brain waves. He was supposed to fall asleep with 40 wires glued to his head. Needless to say he didn’t and he also didn’t have epilepsy. Sometimes I just feel like I can’t keep putting my child through all this. Because of Daniel’s intolerance to gluten our GP said we should test for celiac disease and I just said “no, no more blood tests!” I just couldn’t bear the thought of putting him through that unnecessarily.

Update:

Daniel is now a student at Autism Qld in their Early Intervention Program. He's also been to see a biomedical specialist, Dr Gary Deed, at Your Health Carina and is taking supplements of probiotics, amino fatty acids and zinc. Daniel will be going to see a dietician who tests for allergies and intolerances in the next few weeks.