Often people will say to me “I don’t know how you do it?!” but I am just like you, I am not a perfect mother who has boundless patience and time and this was not my choice, but it is my life and my responsibility. As a parent of a new baby, you of course hope that your baby will be mentally and emotionally robust but to have a doctor or a medical professional tell you otherwise is the ultimate shock. Fear, denial and isolation can be thrust upon you and you can descend into a period of grief for a perfect vision of motherhood. Everyday you strive to set these thoughts aside, stand on your own two feet and embrace the NOW!
This is how it was for me when my daughter was diagnosed with ASD at 2.5years old. We had a hunch from about 15 months that things were not developing as they should and certain behaviours were manifesting that suggested that she was not finding the world her friend. Huge bouts of screaming and crying were the norm and she was permanently in a state of what I can only describe as ‘rabbit in headlights’! We were new parents, she was our first baby and maybe the signs were there earlier but to us she was a happy little baby who smiled and babbled and loved peek-a-boo and tickles but that suddenly all changed and the light went out in her eyes and the world became a very scary place. She lost any words that she had and she became withdrawn and isolated from people and situations and her play became very repetitive. It was terrifying to watch and the powerlessness was stark and confronting. We were referred to a behavioural psychologist who did the necessary school visit and assessments and the result we had been resigned to but also feared came out as a conclusive ASD diagnosis. So what now?
The world of Autism is growing and expanding positively and more and more research and efforts are being put into helping and supporting families which is amazing for raising its profile and demystifying it to a certain extent. There is still so much to learn, however; its huge spectrum and nuances can be extremely daunting to navigate as a parent. They say that for every 100 children with Autism, you find 100 different types of Autism and when finding the preferred modality to help your child, deciding what to tackle first can be very confusing. Do you work on their behaviours with ABA, or their social skills and emotional regulation with play therapy? Do you work on their speech with speech therapy or their motor skills and sensory profile with occupational therapy? Or a combination of everything? And how many hours are the right number of hours? Experts will tell you that their modality is best and that it has to be done as soon as the child is diagnosed but I remember thinking that I don’t have enough hours in the week and questioning what I was prepared to put my child through to get to that magic number.
At the time we felt we had no other choice and we did do the hard and fast route to begin with and my daughter was doing 12 hours of ABA, 6 hours of play therapy and 2 hours of speech therapy, but this became unsustainable – I was tired with two other little boys at home, ferrying her back and forth and she was exhausted and not a happy little girl. However, it was only when we felt that we were reaching a cross-roads that we were introduced to AIMS: a bespoke service whereby therapists are trained under the AIMS model and they come into the home, either as a live-in or a live-out and work with the child with the resources available to them in the home environment.
The curriculum is tailor-made to the child’s interests and passions within 4 main areas – Awareness, Interests, Movement and Sensory, rather than it be based on any specific concept. Therefore, all the foundational skills can be taught under the umbrella of a child’s specific interests. For instance, our therapist joined us on a holiday to Bali and this was while the threat of the volcano was still rife. My daughter became fascinated by volcanoes and asked a lot about them, so our therapist adapted a unit of work including artwork, sensory experiments, phonics, geography, science all under that project-based learning arena.
We are often told that the greatest therapy for our kids is at home but with working parents or parents with other kids, sometimes this is not achievable and the AIMS therapists take that role within the comfort and security that the home brings and this can allow that child more scope to work and learn effectively. I can honestly say that once we dialled back all the interventions and introduced a more relaxed but still pertinent form of therapy, the light returned to her eyes and she became a happy little girl who seemed to want to learn and in turn she then got the best out of me. Her therapist is honestly like her best friend – a trained chaperone who gives her access to indoor and outdoor play as well as teaching her valuable life lessons through trips and excursions.
It is so natural to put your child first and gear everything around making them feel happy and secure, however, one of the key lessons that I have learnt in this journey is that if YOU are not feeling happy and secure then nothing works. Our ASD children are often so sensorally wired that our vibes and moods can have a direct impact on their capacity to make sense of the world. Finding a support network is pretty key so whether it be friends, family, a Facebook group or Counselling, finding the people who you trust with your deepest darkest fears can be invaluable in those early days when prospects may seem pretty bleak and day to day life pretty tough.
I also found that our children tell us more about what should be done than we give them credit for; by being in tune with my daughter’s filter and capacity for certain interventions that we had chosen for her, we became better aligned to the right kind of approach for her and that isn’t necessarily what the experts have recommended for her. As a parent you might not be an Autism expert, but as a parent, you are an expert in your Autistic child!
Pippa is British and has lived in Singapore with her husband and 3 young children, Hetty (5.5), Riley (3.5) and Bruno (2) for 11 years. She is a School Counsellor at a British International School.