The boy who wouldn't stop crying: Gaining Trust
Some children are hard to forget. They leave an indelible impression for a variety of reasons. Arnav, whom I first met at the age of 4 years is one such child. He is the boy who wouldn’t stop crying. He cried, inconsolable; loud sobs for almost three hours every day for about six months. It was the same at home. Any change from his daily routine and Arnav would start crying. Things were so bad that whenever they had guests; Mum would move to the bedroom with Arnav so that the rest of the family could interact with the guests and Arnav would be at ease. It took us almost 6 months; but we persisted and, in the end, we built trust, understood what he needed and finally got him to accept the help we had to offer. It was an uphill battle but being able to gain his trust, to witness the transformation from the boy who wouldn’t stop crying to a boy confident enough to travel to Singapore is the reason I will always remember him.
Even at 4 years of age; Arnav could not speak a single word. He could not even point at something if he wanted it. So, he used the only means available to communicate- crying. That is how babies communicate and since other advanced skills to communicate had not developed, he continued to cry. But why the incessant crying you may wonder. Arnav has severe Autism. The nature of his challenges left him insecure and vulnerable. One could see it in his big expressive eyes and the perpetual frown on his face.
Arnav had difficulty with voluntary motor movements (Dyspraxia). This meant Arnav often understood what was expected of him but couldn’t follow through. For example, if his mother was calling him; he understood that he was required to get up and move towards her. However, he couldn’t do it as his body didn’t cooperate. Imagine the frustration of wanting to do so many things but not being able to. To make matters confusing for those around him; if he was to get up and walk towards his mother without any conscious command; he was able to do so. Leaving others wondering if he was choosing to follow through sometimes and not at other times.People commented on his wilful stubborness when he wasn't.
Arnav had poor proprioception. This means that the feedback from the various joints in his body was poor. Consequently, his awareness of his own body was poor. As an example, if one were to ask Arnav; he would know the meaning of the word nose. But attempting to identify it on himself was not possible. (Something as mundane as wiping his nose or scratching it (when he wanted to) even was therefore a challenge). Similarly understanding his own body in relation to others, in relation to the space around him was difficult. Small wonder then Arnav constantly sought the security of a wall behind him. Leaning against something solid helped him to identify himself in space better.
Understanding his challenges with voluntary motor movements and body image helped us to appreciate his insistence on being in familiar surroundings. They were easier to negotiate. We also began to understand why he felt so insecure in a room full of other children. If another child ran around in an unpredictable manner or brushed past him, sure enough there would be a howl of protest.
Difficulty with voluntary motor movement also affected his ability to move the various muscles required for speaking. Our specific efforts in this direction helped to improve his ability to chew, suck etc but speech alluded him. We were successful though in developing pointing skills. We also discovered his strength in being able to read. This was a strength we channelized to help him communicate through his communication diary.
There were many challenges that we worked through- such as difficulty in falling asleep. At the time the family met us, there were major
sleep issues. Dad used to drive around the colony until Arnav dozed off. Consistent occupational therapy helped overcome the sleep challenge.
Our biggest break-through however was helping mum reach out to her child. Empowering her with an understanding of her child and with techniques that helped Arnav to develop his skills as well as create a supportive environment; which built trust. Over time the quality of the family’s life changed. They were now able to participate in family functions, eat out, travel overseas and do so many things that many of us take for granted.
Today Arnav is 18 years old,you can say hi to him here-https://togethersee.org/, the first video on the site is his.
Arnav’s mother Ruby was kind enough to write about their early journey, which I share here.
Our journey at Communication DEALL
At the age of 2 years , we found out Arnav had Autism. As a young naive mother my 1st question to the doctor was ,” Will he go to school?”. I had decided, that within 2 years I will make Arnav all right.
By the age of 4 ,Arnav’s problems had increased and the situation had deteriorated from bad to worse. We were rejected from 2 play schools and by a well- known occupational therapist.
During the age of 4 , Arnav had fallen into a pattern of incessant crying habit. He would cry the whole day and we were clueless as to what he wants.
During that time, Arnav got enrolled with Communication DEALL, Mumbai. Deepa was actually God sent. She made me realise , Arnav was trying to tell us something and that we need to understand him better. A new born cries to communicate, so did Arnav. His cries were to let us know that he wanted something.
One of the first things that Deepa introduced me to was,“ Parallel talk" and “ Informing Arnav beforehand on what to expect”
1)Parallel talk was a big boon. The day I started to talk for both Arnav and me, I saw a change in his behaviour. He now realised that mom understood what he wanted. For eg , Mom : “Arnav colour this page" .
Mother on behalf of child says. Arnav :”I don't want to do it".
Mom: Just this one page , then you can take a break". The child complies. After talking back and forth for Arnav , things got much easier.
2) Informing Arnav before hand-
Suppose you are made to dress up and escorted to sit in a car , will you not shout “Where are you taking me?”.
This is the mistake, we do to a non- verbal Autistic child. Just because they don't speak ,it doesn't means they have nothing to say.
Deepa always said , treat your child like any normal kid of that age. Henceforth, I made a point to prepare him beforehand.
For a hair cutting event , I would enact the whole process at home. The wrap, spray of water, sniping of scissors and so on. I showed him pictures of a relative whom we were to visit and tell him what he could do there. Always carried some books or a puzzle. Deepa always emphasised that talking to the child is a must.
Deepa put forth the point that, speech is a mode of communication. The steps involved were,
2. Eye contact
5. Lastly Speech.
First few months goes in preparing the base. Once you achieve compliance, the child is willing to learn new things.
Deepa has this quality to hammer the nail on the head. She is always spot on in understanding the child's capabilities. The very 1st year, she told us that Arnav will find it difficult to follow mainstream school.
I have to admit, accepting this was difficult. I did try academic in a special school Arnav was always good in memorizing stuff, but the practical implications was just not there. For e.g. He knows that the opposite of pull is push, but enacting pull and push was not achieved.
In the process precious time is wasted . When Arnav was 10 years, I realised , he had scattered development and again had to start from scratch.
The most important point, Deepa kept telling mothers was, be a mother to your child and not therapists. In a short time to gain maximum results mothers forget to enjoy their children. She kept saying engage your child in play, sing with them dance with them, that's the motivation and assurance your child needs.
Deepa’s in-depth knowledge on Autism is par excellence. She had introduced Arnav to the spell chart. It was a big surprise to see Arnav spell big words. Arnav picked up words from books, he was not taught words. These words were then incorporated in the communication book.
I remember one such episode. It was after a year of joining DEALL and Arnav's crying had reduced but for some reason the meltdowns started to increase again.
One day just before feeding him I had to attend an international call. I had to cut short the conversation because of Arnav’s profuse crying. In the communication book I asked Arnav to point the body part that was paining, but he choose the last option which read as” none of these”. I then showed him basic needs page and he pointed out food. Those days Arnav was under medication and the side effect was increased hunger. I then altered the frequency of his meals and solved the problem of his crying.
The 1st formidable years that Arnav spent under Deepa's guidance are incomparable . If I understand my son today it is because of her.
Today Arnav goes to a vocational centre and learns a host of things that interest him. I have accepted the fact that Arnav will achieve things at his own pace and capabilities. My goal for Arnav is independence and happiness, that's what Deepa asked us to focus on 15 years back.
A footnote :
Someone read the previous story I had shared and remarked that it was a lot we were asking of families. Was it possible to devote the kind of time and energy that mothers of children with Autism end up giving? With Autism, unlike many other conditions; there is no other choice. Autism is one condition that deteriorates rapidly if not managed well in the early years. Intensive work in the early years definitely translates to a better quality of life all around. The picture otherwise can be extremely grim especially in severe cases. The good news is that with the right help in the right intensity, at the right time; gains are exponential.