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Submitted by PatientsEngage on 31 August 2015

What does it take to bring up a child with Asperger’s Syndrome? Mousumi Dutta shares her experience - straight from the heart.

Aria, my second child, was due in mid January 1999.... but due to my blood pressure fluctuations, and a bit of kiasu-ism (Singapore-style, about January-born children losing a whole academic year) prompted us to induce pain and complete delivery before the end of the year. I had completed 37 weeks and my gynaecologist suggested that this was the best possible option. We took the offer to get Aria out a couple of weeks before time and were happy to hold her in our arms. But a year or so later, when things appeared a bit out of the ordinary and she missed a few milestones...I couldn't help but blame myself for making that decision. I have been told by many that this is unlikely the case and I should not be blaming myself for her condition.... but being the mother of a 'special' child is indeed a 'special' experience in many varied ways and even after 16 years of nurturing, I have not been able to get over that guilt.

Aria was a chubby, cute baby and the first year passed without any cause for concern. She walked at about a year and all motor skills markers were on track. She did not have good eye contact and very often looked through us. Initially we would laugh it off but around the time of her second birthday we thought that it was time we discussed the issue with people in the know! Another telltale sign was her delayed speech. She was hardly speaking in monosyllables by the time she was two. Her attention was hard to hold. In fact she had limited interests and was quite a passive and easy-to-manage kid. Music was something that excited her and she was extremely fond of rhymes and jingles.

On the spectrum

My mother's instincts played up. All the information on the web is helpful but can be sometimes very overwhelming for parents hoping to get answers and seek directions. I remember reading and reading.... and sometimes ending up more confused than what we had started off with! 

We decided to meet a psychologist and then started what I think was the most stressful and difficult part of our journey. Making a slightly verbal 2.5 year-old undertake the various tests was a very difficult task. She would sometimes lose interest mid-way and walk away or even refuse to cooperate. Aria was diagnosed to have mild Autism and ADD. In other words she was a 'kid on the spectrum'.

At the advice of the Psychologist we started on both speech and occupational therapy. I used to sit in for most of those sessions, and then try and duplicate the experience at home. Years passed... It was tough and progress was slow. As I sit back and think about the many, many hours of therapy we did with Aria I would like to believe that all our efforts made a difference. Her second assessment, done when she was about 6 years old, revealed an improvement in the test scores and while still on the spectrum, the label was changed to 'Asperger's Syndrome'. However, I must admit that the resources spent in terms of time, money and effort were substantial. As the mother of a child - newly diagnosed to be on the spectrum - life had taken a unique turn. I read up as much as I could and was running around from pillar to post, ready to try all kinds of approaches/ therapists that came along the way. It was as if I was looking for a quick fix for my little girl... but that was hard to come by! 

Studying with Aria

Aria has been very lucky with her schools and, touch wood, I hope this streak of good luck stays with her. She joined a kindergarten, Chiltern House, which was extremely nurturing. It had a class for "special kids" and the teachers and assistants there were very patient, kind and understanding. As her work habits improved, Aria was slowly integrated with the mainstream class - initially for art and music and ultimately for academic subjects. It was a proud moment for all of us when she graduated from kindergarten and performed at the graduation ceremony with all the other kids... she was one of them! Completing kindergarten was great, but now it was time to face the world. She was out of the secure confines of the nurturing environment and stepping into primary school and the world at large.

Aria was lucky to get admission in Singapore's first autism-friendly school Pathlight. This school teaches local mainstream in an autism-friendly environment. Pathlight has worked very well for her. Yes, it follows the mainstream curriculum, which can be very demanding at times, but the teachers are trained and helpful and above all, the structured curriculum helps. Aria and others like her find it very hard to imagine and think without any guidelines... hence, according to me, this curriculum, despite its challenges, is a better alternative to any unstructured course. Aria sat for her PSLE (primary school leaving examination) in 2012 and did well!

But everyday is different. There were instances when just when I thought that she has successfully mastered a skill, I was in for a rude shock! Consistency has been an issue. 

Aria is now 16 years old and in Sec 3 (class 9). Academics are sometimes quite a challenge (especially humanities and English) but we are moving along. As my friends know, I study with Aria. She finds self-study difficult, so there I am waiting for her to come home from school and we get working on the next leg. I know that this is not the best arrangement and perhaps not even sustainable, but that's the best option that I see for now. 

Beyond that time… will see...

The challenge of friendships

Aria has always been a very pleasant and good-natured girl. Compliance was not a problem, nor was functional communication. The major stumbling block was in the field of social maturity. She got along well with adults and kids, but peers were not so forgiving. She tried hard (with all the scripted conversation she learnt at the therapy sessions), but it was difficult. I tried, too, wanting to find that 'anchor' who would understand and appreciate her the way she is and include Aria in their games and gatherings, but I couldn't manage to do so. This aspect of friendships and acceptance by typical peers has perhaps been one of the most challenging areas in our lives. I would see her try, sometimes too hard and fail.... till at one time (around the age of 13/14) she stopped trying and was content with the few friends she had in school or those whom she had met and were more 'like her'.

It was around this time we started a new therapy called RDI (Relationship Development Intervention). This was offered by an American doctor and his wife and we saw some amazing testimonials. It was interesting and addressed Aria's primary weakness ie 'social maturity and interactions'. It was quite an intensive process and it involved both parents - making weekly videos, discussing sessions via webinars, doing reflection pieces and getting back to therapy with the child again. It started off well but we couldn't manage the schedule. With all the demands of school and my husband's travel, it was hard to put up with the demands of the process and we gave up mid-way. And that was the end of all therapy we did with Aria. 

Children can be very brutally frank. Often Aria got told off by 'typical' kids and it was painful to watch how hard she tried to make friends. I realised that interactions with typical children in supervised settings worked well. It was not always easy for her.... but gradually she learned how to manage herself in such situations. She has done years of speech and drama lessons (to which I attribute her confidence), art lessons, music lessons and so on. This worked well for her.  It gave her the opportunity to interact and learn with typical kids while the teacher helped in managing the challenge coefficient.

Towards independence

Both at school and at home, we work towards teaching her independent living skills. She has learned to travel alone using public transport in Singapore and has also taken a couple of flights alone (while I held my heart in my hands)!

She has a flair for languages and is proficient in Korean and functional Japanese! She has always been musically inclined and we have done our best to encourage her. She has been singing and plays the guitar too. The latest development is that she has started to write her own songs and strums the guitar. I think it's her way of expressing her feelings and some of the lyrics are quite haunting. I must mention at this point that these days she doesn't seek "friends" as she used to before. Perhaps she has realised that she is different and is happy to have friendship with kids like her. But as a parent, watching your child come to terms with such hard truths can be heartbreaking.

I would also like to mention that we have found physical activity to be a huge plus in our experience. It could be because Aria had always been passive and laid back, with low muscle tone and on the heavier side. We have encouraged her to exercise regularly - be it cycling, skipping, jogging, inline skating, swimming.... whatever works. Physical activity makes them more alert and helps in focusing on the task at hand.

The other child

All this while, I had an older child, Airashi, growing up, too...and she is just about 3 years older to Aria. We have tried our best to not lose sight of her needs and give her all the attention due to her but I must admit that there have been instances where the expectations placed on her have been more than justified. In my endeavour to protect my 'special' child, I have often expected the older one to be more forgiving, more understanding and accommodating than I probably should have. There have been instances where Airashi has surprised us with her maturity in handling Aria, but the normal sibling rivalry is taken to a whole new level when one of them is 'less than equal' and we parents have a tough job of balancing on our hands.

And now about me…

I must confess that Aria's diagnosis changed all our lives. Initially, coming to terms itself was hard and then once we had gone through the 'why me' rounds and learned to accept and acknowledge the situation, it got better. I realised that I had to strengthen myself both physically and mentally to be able to give her my best support. I'm not the fittest of persons, but the situation motivated me to take better care of my health and lifestyle! But still the stress does show up sometimes with high blood pressure readings and my eczema playing up. While I believe that acknowledging the child's condition and being open about it with the school and the society helps, I do know that many parents have reservations on this front and are also discouraged by the social stigma attached!

I'm proud to say that my hard work has mostly paid off, but I have faced the occasional dead end when nothing seems to be going right. That's when I have to tell myself that I have to keep going.... if I don't, then who would? I try to relax by reading, practising yoga, playing bridge and do whatever else I enjoy while Aria is at school so that I am not too tired and stressed when I am dealing with her. Despite all of that, I do lose my cool sometimes and then Aria tells me, "Please don't get angry with me mama.....I am trying". And that gives me the jolt and puts me back on track again. Her innocence and naivety are admirable, but does the world have place for such virtues?

The future is uncertain and frightening.... and the last thing I want is my older child to be burdened for life! I do not actively belong to any 'support group', but being a part of the Pathlight family and being closely related to the Autism Resource Center (ARC) is very helpful. Every parent you meet there is on a similar journey and has a story to share and such support is priceless. Moreover, the school and ARC are now focusing on the next leg.... working towards making the students "employable" and looking at ways in which these kids can hold a job, earn a living and lead independent lives in the future.

It’s a marathon, not a sprint

How do I rate my journey? Not perfect, but I am surely proud of our achievements. It’s amazing when I see a confident Aria on stage, hosting a show or singing in front of a large audience and the whole auditorium clapping and cheering for her. It makes me very emotional and momentarily forget the hardships and challenges that have strewn our path. Often people ask me about what our plans for the future are? My answer is a consistent 'I don't know as I try not to think too far'.... I live by the day and try to set very short term goals for us to reach. Again, I know this is not the best approach, but it's the best I can do at this stage.

I would like to conclude by mentioning that families like us are in a marathon... not a sprint. We have to have faith and confidence and keep on working towards our goals. Patience and perseverance are key. Work towards making the child as independent as possible to prepare for the future. And ensure the child has self esteem so that he/she can stand up to the world and say I'm differently abled...not disabled!!

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