Angela's Story
I am lucky enough to be the mother of 3 very intelligent, mischievous and loud (my goodness, they are loud) boys aged 5, 4 and 2. In a former life I was a primary school teacher. As a fresh faced 22 year old, I tried to inspire my first class of 12 year olds into some self-belief with a chart that read,
I am only one,
But still I am one.
I cannot do everything
But still I can do something;
And because I cannot do everything
I will not refuse to do the something that I can do.
Edward Everett Hale
We recited it often and I tried to refer to it across the school day. It seemed to work so I continued to use it with each class that I taught. As I prepared for my maternity leave, I packed the chart away with my others and forgot about it. It remained there until I decided to unpack and cull many of my long unused ‘teacher’ things. Reading those words through the worried, weary eyes of a mother who knew there was something different about her son, they took on new meaning.
Like every mother before me, I had made the unspoken pledge to my tiny newborn that I would move Heaven and Earth to do whatever it took to do the best for him.
Granted, I was at a loss to know what to try next but I knew that I could not refuse to do the something that I could do.
Assessment and Diagnosis
After a lot of inner searching, we decided to go ahead with the assessment process because we felt that with a diagnosis came support and understanding. Our GP referred us for an occupational therapy assessment with a comprehensive report. We also saw a child psychologist as she had been recommended to us as someone who could provide us with practical strategies, which she did. We had a few sessions with her (and have done post diagnosis as well) and she also contributed a report for the paediatrician. It was the paediatrician who ultimately gave the diagnosis of Autism Spectrum Disorder (ASD) but it has been the psychologist and occupational therapist who have provided ongoing support and strategies when we seek them.
We were not surprised by his diagnosis so it did not come as a crushing blow. They could have diagnosed him as a frog and it would not have changed who our son was. He was still the same amazing little man and the world was still his oyster. That said, his diagnosis also didn’t alter the fact that he could also be incredibly hard work.
Choosing Holistic Approach for ASD
I started reading and I started asking lots of questions. Each book, website and blog lead to another and with it more avenues of exploration. It soon became clear that to help our son with ASD, we could follow the well-worn path of conventional wisdom or we could follow a road far less travelled though a holistic approach.
We followed our hearts... and decided our family philosophy would be to "First Do No Harm"... With this in mind we decided that for our family, a holistic approach was right at this time in our lives. This was by no means an easy decision and certainly an unpopular one amongst our circle of friends and family. As we continued to read late into the nights and ask questions (many, many of which were answered by the ever patient occupational therapist) we soon realised that there were so many alternatives and treatment options out there that it was at times overwhelming. We followed our guts, literally, by continually refining our diet until we were eating whole, ‘real’ foods including cod liver oil and fermented foods like sauerkraut and kefir. We also implemented other strategies including:
- play based learning strategies
- massage
- homeopathy
- sensory tools
- spending countless hours making concrete aides like charts and books for our son to use to guide his behaviour and routines
- reducing our chemical use and our exposure to electromagnetic fields (EMFs)
Today, after even more reading and more questions, our family are now following the Gut and Psychology Syndrome (GAPS) protocol and are considering commencing Bowen therapy. It has been about 2 years since we started on this holistic journey. The changes to our family and our lifestyle have been numerous. Some have been more successful than others and some easier than others. There have definitely been highs and lows!
The Downs...
For us, the most challenging part of our journey to date has been the lack of support and the opposition that we have received from our loved ones. Reactions to the decisions we have made, have varied from rolled eyes to being told outright that we are doing the wrong thing. Unbelievably, our diet has been the most contentious decision that we have made. We feel that some people see our deviation away from the Standard Australian Diet as a criticism of their choice to follow it, which of course it isn’t. Despite trying to inform people of the research and thinking behind our choices while being conscious not to preach at them, we’ve been told that we’re wasting our time, that we’re depriving our children and even turning them into ‘odd-bods’.
For me personally, the greatest insult I have ever received as a parent was being told (by someone I love very much) that there was nothing wrong with my son and that I was wasting my time “dragging him about the countryside to appointments” and refusing to let him eat “normal” food. Later they told me that he was “growing out of it.” It was only afterwards as I cried with indignation, that I realised that I had actually received a compliment. My son appeared to be growing out of whatever had been “wrong” with him because of our hard work. Our perseverance, sacrifice, commitment and love was working! On the many tough days, I remind myself of this back handed compliment but it would still mean the world to know that our loved ones had our backs as we battle through these rough moments.
Another challenge of the holistic route is time. It takes time to be informed about the changes we have made, and this is true of any aspect of parenthood. Taking a path less travelled means that there are less people who have already made the journey, so it takes time to find reliable support and information. By far the most time consuming aspect of our journey has been the time needed to prepare and source real food. Everything we eat, we make.
We have seen enough positive changes in our son, his behaviour and his health to know that we’re making a difference... so despite the challenges that time is definitely worth it!
... and the Ups!
Over time we have seen him making obvious progress. Certainly, this advancement did not happen overnight, and is sometimes more obvious to his teachers and support team than it is to us in the every day. For each step he takes forwards, there are backward steps too, but he is moving forwards nonetheless. This makes us feel relieved, and also empowered by our decision to choose natural health solutions.
The greatest positve changes we have seen have include our son’s anxiety, his play skills, and his ability to regulate his own behaviour.
Anxiety
Where once our son was so panicked by traffic that he was unable to cross a road without screaming, he is now able to hold our hand, take a deep breath and walk across. The same can be said for swimming lessons where his progress was impacted by his fear of water on his face. Now, he is learning freestyle!
Play and Social Interaction
He is also developing his confidence and ability when playing with others. Even several months ago, he played at his brothers and friends whereas now he is starting to play with them. And even beyond his favourite themes!
Self-Regulation
Where once his instant reaction to frustrations was to lash out violently, he is now able to use taught strategies to manage his emotions about half of the time.
We have found no absolute or fool proof solutions on our journey and don’t expect to. Our progress has come through hard work and perseverance, and in most areas he is still in the ‘can do it sometimes’ stage. Nonetheless, we are proud and encouraged by how far he has come.
A journey for the whole family...
The other wonderful aspect about our son’s treatment is that our whole family is involved and informed about why we do things. He is not singled out in any way as we all sit down to the same meals, use the same shampoo and cough and splutter together taking our cod liver oil. Just this past weekend, my husband massaged coconut oil into all of the boys following a sequence we have learned to relieve anxiety. They weren’t all anxious but they all benefited from this time and touch from their Dad while they unknowingly supported their brother.
Some unexpected benefits from experiencing a life with autism...
Some days it is hard not to wallow in self-pity and wonder why autism had to strike our family. What have we ever done to deserve this? More and more often however, I feel gratitude. Not gratitude for autism certainly, but gratitude for the opportunities we now have because of it. We were never ‘takeaway 3 nights a week’ people and we didn’t eat copious amounts of processed food, but we now eat a diet which is much more nourishing and sustaining than we ever did. Unrelated health issues within our family have cleared correspondingly. We are much more self- aware and educated about the choices we make regarding our family’s health.
Autism has also been the impetuous to rid our lives of chemicals and to embrace more wholesome parenting methods. Budget constraints have forced us to re-evaluate needs and wants and have seen us get back into practices we used to do like vege gardening. We even raise our own meat chooks so that they are free from antibiotics and chemicals. I would never have considered doing this before autism, never! Our lifestyle has changed and continues to evolve.
The greatest thing that has come of this journey has been meeting the people who now help and support us. While our families have stepped back, others have generously filled the void with words of wisdom, cooking tips and recipes, strategies, food they have farmed with love, shoulders to cry on and most importantly, their stories.
It is a great irony that autism, a disorder which effects social interactions and communication, has bought us so many friends!
The single most important piece of advice that I could offer any family in our situation is summed up best by Theodore Roosevelt, “Do what you can, with what you have, where you are.” Look at where you are ‘at’ on your journey and prioritise accordingly. Just because there are so many options doesn’t mean that you cannot begin. There is always something that you can do.
