My Dutch husband and I met and fell in love in Bahrain and were married in 2001. We lived in Mumbai and then relocated to the Netherlands. In December 2008 after a few rounds of fertility treatments, we were blessed with a beautiful baby boy whom we named “Tristan”.
Tristan was born into a room of Dutch doctors chanting “Aum” because I have a tiny tattoo which they spied while giving me my epidural. It was a very serene experience for me to have him come into the world with one of the oldest and most sacred chants to us Indians .
We brought our son home the next morning, we drove through a winter wonderland and came into a warm home decorated for our new arrival. Every window glowed with twinkling Christmas >lights and trees. We live on a canal that had frozen and people were skating on it creating a moving postcard. The dark days and nights seemed to roll into one another and it eased our new normal of nursing, diaper changes and sleeping. My husband moved into the guest room and my mom moved in with me and Tristan. It was a special time as we bonded as mothers.
We noticed that Tristan wouldn’t fully open his eyes and seemed sensitive to light and sound , routine changes and being in another home. These were early signs of autism but we knew nothing about this neurological condition then. At 16 months when he was not responding to his name, would make everything “spin around” and wasn’t pointing and his incessant babbling ceased and it became difficult to interact with him ; my husband asked me to read the M-CHAT-R questionnaire ( Modified checklist for Autism in Toddlers). I argued with him and was incensed that he was criticising me as a mom for not noticing anything was wrong .
Introspection helped me to realize that I was in the Netherlands with virtually no family , few friends and no support system. A new mom who had nobody to compare Tristan’s developmental milestones against and so I grudgingly googled the list and started to go through the questions and I began to recognise my child. Nothing in my life had prepared me for the spectrum of emotions I felt .
Thankfully my first instinct was that if this is what he has then I must do everything in my power to help him and us. I contacted Early Intervention and the bureau and they affirmed that there was cause for concern. We were put on a waiting list at The Centre of Autism for Pivotal Response Training ( a form of ABA and floortime) assisting in communication and socialisation .
I was incredibly fortunate to travel to Mumbai and avail of speech therapy and occupational therapy. In the Netherlands finding an occupational therapist for children with autism is a challenge. We followed a sensory diet and the Hanen speech programme.
I began to read and understand more about autism and to observe Tristan. I am blessed to have the kind of family and friends that I have; they were kind, caring, resourceful and they loved us unconditionally and gave me strength, encouragement and guidance when I needed it most.
When we came back to the Netherlands, the kindergarten refused to have him there because he wouldn’t sit still, so another agency put him in a group at a school for severely mentally and physically handicapped children. Not knowing the intricacies of the schooling system nor understanding the special needs system and not knowing how my son would develop; I allowed this to happen. I was told that this was the best place for my son.
Mother’s intuition whispered that the noises the other children made to communicate would distress my child and he would retreat into his safe world. Sitting in a circle while forced to make eye contact would stress and upset him.
I began to educate myself about the Dutch educational system and discovered that there was a gap in the system for autistic children who were diagnosed before the age of three. There was no place for them and by default they were placed in schools for children that were severely mentally and physically handicapped. They were too young to do IQ tests and it was assumed that they had a low IQ.
This paved a rigid and dangerous path for children who needed stimulation and encouragement. Raising an autistic child is about drawing them into our world while trying to engage them in theirs. Placing them in these schools worked adversely and negated the work being done by the child’s team. I had to try and change the system from within and contacted agencies connected to special needs and education .
Tristan was showing an eagerness to communicate in English and in Dutch and I knew he deserved an education specialised for autistic children. I read about a school that had small groups of ASD children in classes called “The Atlas”.
I organised a meeting of ten people. There were three agencies and behavioural therapists, psychologists and teachers schools present to discuss Tristan and their current system that was outdated and didn’t make allowances for research and progress in the field of autism leading to an earlier diagnosis. We had a productive and emotional meeting.
In Dutch there is a word for a parent and I find it very meaningful and respectful. It is; “ervaringsdeskundige”, it means a “specialist of experience”. We invest so much of ourselves connecting to our children that we accumulate a wealth of information.
Tristan was accepted into the “ Atlas group” where he flourished among other children that had autism. When Cardea group that owned the Atlas opened classrooms for children who were diagnosed under the age of three, I was told they called the children “ Kleine Tristantjes” which means “ Little Tristans”.
It gave me an immense sense of pride and peace that we were able to make a difference in this country we also call Home.
Writer: Shalini Sawhny – Braxhoofden