One Family’s Journey with Their Autistic Child
It has never been so hard to express myself as I am finding it today. The few words that anyone would read is a snapshot of my last 20 years of life.
This is not just a story, but a message I want to pass on to parents and caregivers of kids who have any kind of special needs - we are so excited, nervous, happy and there can be an endless list of emotions that one experiences when there is an addition to our families.
My son was born the 25th of May, 2001. It was an exciting moment for us and the entire extended family. I was a young mother, and throughout my pregnancy the only thing that ever came to my mind was that I hope my child is healthy.
After a tough labor of about 36 hours I finally gave birth to my son Kush and I cannot express what I felt when I first saw him. I was so emotional and overjoyed that I did not notice that the right side of his face had a large port wine stain - caused by overabundance of tiny blood vessels under the skin.
When the doctor broke this news, I burst out crying because I hadn’t seen such a birthmark before. I somehow quickly convinced myself that this is just something superficial. I was so looking forward to enjoying each and every milestone of my son that I ignored little signs that started showing up right at infancy. He was very restless and had huge sleep problems from day one, it used to take me hours to put him to sleep. I was exhausted and tired but as any other parent I never wanted to even think that there could be something wrong.
All his physical milestones were pretty much meeting his age, turning around, smiling, crawling, teething, standing and walking. With all these happening without too much effort all of us somehow missed the fact that there is some issue with his communication. He was visually very good from the very beginning and whatever I used to show him he would just copy. I had no clue of autism, had never heard of it 20 years ago and in my wildest dreams could not have even imagined that my son would ever be autistic.
Slowly I started to feel that something is different. At 1+ years of age he liked to play with household items by himself. I would buy all kinds of toys for him, but except for a ball he did not like any other toys and was even scared of soft toys. My son never brought any of his toys or items he held in his hands to show me or anyone else.
I had enrolled him in playschool around 19 months after talking to a lot of other parents and relatives about him still not saying any words. This is a request to any parent out there who has a toddler who at 18 months of age still isn’t saying words: don’t assume anything, just seek professional advice. My journey 20 years ago was different, but I am relieved that there is a lot more help available nowadays.
The preschool finally called me and complained that my son does not respond to his name. I was shocked and felt guilty about not noticing this before. We immediately took him to a pediatrician who checked his ears and said he has 100 percent blockage in his ears and his hearing was almost nil.
During this time we were planning on moving from Sri Lanka to Kenya where my partner was working and my son was attending preschool. I stayed behind in India to get my son’s treatment done, totally ignorant of what was coming our way. He had a couple of rounds of antibiotics and his hearing was restored back to normal.
The specialist referred me to a psychologist and I didn’t understand why at the time. When an assessment was finally completed on him at 2 years and 3 months of age, he was declared to be suffering from PDD (Pervasive Development Disorder) and ADHD.
I could not believe what was going on and the worst news I got was that this may be a long term disability. Everyone around me had their own views and suggestions which made me feel more lost and hopeless. Kush was showing all kinds of symptoms like delayed speech, sensory processing issues, emotional meltdowns and was quite hyper.
It all came to a head one day when I was sick and tired of just mourning what had happened and the fear of what was going to happen. There is a lot of social stigma attached to any kind of disability. I ask you to be kind and not judge a parent or caregiver when their child is behaving in a way that is at odds with “the norm”. While I was sitting and crying that day, my son just walked up to me and wiped my tears. This simple act of his gave me so much strength and courage that I hugged him and promised him that I will do the best for him and will not give up. That is the most important thing of my story. YOU CANNOT GIVE UP.
I started to browse the internet to get more information on ADHD and PDD, but ended up discovering that Kush is more on the autism spectrum.
We applied for Canadian Immigration in 2005, and got our PR in November of 2007 against all odds. Against all odds because my son’s autism went undetected during his medical exam at the age of 4. The therapies which he was going through had given him the ability to say a few words, including his name.
We moved to North Vancouver in May of 2008. We had no friends or family here to provide help and support, it was just the three of us, and my son was 7 by that time. I met up with a social worker from the Ministry of Children and Family Development. They have an office in North Vancouver at 221 Esplanade West, and if you feel that you don’t have any support or don’t know where to start, please contact them at 604-981-0008.
After landing in Vancouver, I started calling various school boards to find space for my boy. I was advised by a helpful woman in one of the school boards that North Vancouver catchment is quite good and they work well with their inclusive education policy.
Our catchment school was Ridgeway Elementary, and that is where we met my son’s first Educational Assistant, Mrs. L. She was wonderful - in fact, the entire team was quite good. After setting up everything for my son, both at school and at home, I thought that things would get easy.
It was a new beginning for us and I was stepping forward with more determination and help that I will get better help for Kush. I want to plead to all parents and caregivers - you may face failures, frustration, stress, and may feel hopeless on a lot of occasions, but please DO NOT GIVE UP. You are your child’s best advocate, you have to fight against all odds to get them what they need.
Autism is not easy, Kush kept having meltdowns at school and at home, and everyone just kept trying. I did have issues with the school as well and some of his teachers due to his disruptive behaviour. He spent most of his time in the learning support room as his inclusion in the regular class was not possible. Slowly, I began to realize that Kush may not get independent to the extent we want him to be so that he can live alone. This realization was quite scary as we did not have any family members to support him once we are gone. I kept having meetings with his behavioural consultants, speech therapists, and occupational therapists to determine what is best for him. There is a lot of professional help available on the North Shore and details can be obtained from Autism Community Training - this is like a bible for anyone looking for help.
Kush was growing up and his needs kept changing. Things started to get worse after his Educational Assistant was changed in Grade 7. This was not a good decision, and I was not consulted for this decision nor could I interfere with it. Please remember that you must advocate for your child and if you are not satisfied with what he or she is receiving in terms of care and help.
I was working from home, and the principal started calling me with his complaints, asking me to come and pick my son up from school. I had always thought that with the concept of inclusive education the school board would have special staff and assistance available but I was wrong. Things were getting worse by the day, and one day I was called and advised that I had to keep my son at home because he had pushed a small girl at his after school care. North Shore Supported Child Development Program is the organization responsible for providing funding for kids with special needs whose parents want to work and need after school care for them. Note though that there is a wait list and limited funding is available.
I was again starting to feel hopeless and alone as my son was rejected from everywhere but I was determined to fight for him. Sadly social acceptance is still lacking - people do not like to invite families who have special needs kids. Being a determined mother, I walked into the head office of the school board to meet with the director of the special needs department and went as far as threatening him - if they did not find the suitable staff who could handle my son, I would go to CBC news and complain that the school board is failing to provide inclusive education. I feel sorry today for having done that, but I was desperate and was doing what I thought would help my son.
Then came the time for my son to move to high school, and this posed another challenge for me as he had become a very high needs child after not receiving proper help in school for the previous few years. After talking to a lot of people and professionals and after visiting various schools, I decided to send him to Windsor Secondary.
The school board was not ready to bend its rules as this school was out of our catchment area. I told the director that I have moved countries to the benefit of my son, why can’t I move homes in the same city. And that’s what we did - we moved to Seymour area so that Kush could attend Windsor.
Life is full of challenges and it never gets easier. Kush’s team at Windsor Secondary was simply awesome, I never got a phone call asking me to pick him up due to some incident that had occurred. However, his mental health was deteriorating due to his adolescence, he used to bolt a lot from home, and there were a lot of complaints from our building including an eviction notice. The turning point came when he was 14 and I got pregnant with twins. I had always wanted a sibling for him, but there were a lot of ifs and buts. The fear of having another autistic child was always there at the back of my mind.
I’m a strong believer that you can identify your well wishers in a time of crisis. There will always be people who will try to pull you down. The tragedy struck at about 21 weeks into my pregnancy. I experienced a miscarriage and was hospitalized for almost two weeks. This was a turning point in our lives. While I was in the hospital and my husband could only get limited time off, I had to beg my social worker and respite worker to take care of Kush.
I kept thinking - if I were to lose my life today battling this tragedy, who would take care of my son. It was a bitter truth but I had to accept that I may not be there with him all his life and he is a child who will always need support. Once I was back from the hospital, I spoke to my social worker and decided to put Kush in care. We filed an application with MCFD for his care and it got approved.
I went into severe depression as my household at one time was supposed to have 3 kids, but with him going into care, I was left empty handed.
Nov 28, 2015 was his first day in care with Hollyburn Family Services, everything was planned and the best staff was hired for him, but I could not bear the separation. I had to leave for a few days to overcome my grief so I went to see my parents. People around me had their own views - some showed sympathy, some expressed their opinion that we should not have more kids. I had to take control of my life and fight the depression. Luckily, once I came back, I got a new job, but life was not the same.
My son was improving in his new environment, and I began to trust my decision that I have to make him learn to live without us. I understood that as big as my heartbreak was, letting him go was the right choice for him to get the care he needed and the correct tools to help and support him.
He used to pay two visits a week, attend school, do his after school activities and was taken care of very well. Things started to fall in place, I saw his progress and this helped me fight my depression. My son was my strength and I had to fight even with myself to support him. The worry about his loneliness had always bothered me, so I decided to do something about it. With great courage I decided that I would still give one last try to get him a sibling. We kept this decision between the two of us, and sought medical advice. We took Kush to genetic counselling at BC Children’s Hospital and got the predicted risk for his potential sibling.
After lots of prayers and well wishes from our friends, we were blessed with a baby girl on Oct 1, 2018. She and Kush share a great bond today and she loves her older brother to the moon and back. My daughter is a healthy and talkative child and Kush also loves his little sister and is protective of her.
I wrote my story in length for the simple reason - to let you all know that you are your child’s best advocate, and don’t let anyone deter you. There may be certain loopholes in our special needs support system, but overall it is still great, you need to trust it and avail as much help as possible.
Good luck to everyone on their journeys - keep up your spirits as it is a long way to go, but you don't have to do it alone.
NSK would like to thank Geet and her husband Sunish along with Kush and little Amoha for sharing their story and family photos with us.
For information and support, Geet shared the resources below which were helpful to her and her family: