Unlocking autism with courage and love.

A mother’s account of her journey with an autistic child.

‘Autism is beauty. Autism is passion. It’s deep thinking and wonder. It’s being so closely connected with our emotions. It’s processing the world on a whole other plain’. @kate_aneverydaystory

A few weeks ago, five-year old Mia Malow obtained another certificate of achievement in her reading class. To any parent, this would be another little milestone in their child’s development and growth which would definitely warrant a hug or maybe even a treat. But for Mia’s parents, Jadel and Nyla Malow, there is nothing small or insignificant with any achievement accomplished by their daughter. It is in fact a huge deal given that just three years ago, Mia could not even speak.

Mia’s story is as much Nyla’s story for there is no doubt whatsoever that she has overcome her ‘condition’ because of her mother’s refusal to give up and her love which reached much further than any diagnosis.

 

Nyla, tell us a little bit about your family.

I had my eldest daughter Leeane at 20 and we went through a challenging time with her as she was a fussy baby. That, along with the fact that we wanted to spend as much time with her as possible in her early years, were the reasons why we waited for a while before trying for another baby. The years went by and one day my husband and I felt we were ready to complete our family and by 27, I was mother to two girls. My pregnancy with Mia was almost like a textbook experience, we had no complications or any issue which indicated that anything was amiss.

 

When did you become concerned?

Mia ticked off all the development boxes in the first year and a half of her life. She smiled, rolled, crawled, said ‘mummy’ and ‘daddy’, all of it. There was no obvious indication as far as I can recall of any behaviour which should have alerted me. The change in her happened gradually and it was not until her 2-year milestone test that it had become very obvious that something was not right. Her speech was the first giveaway followed by the fact that she flat out refused to make eye contact with anyone. I remember that visit and looking at my daughter and realising that even though she was right there in front of me, she wasn’t really there.

It was then that I revisited earlier times and tried to pin point instances which I had perhaps blocked out of my mind in order to not deal with them or had simply fallen for the she was ‘late’ since everyone tells you babies develop at their own pace. It took her a long time to walk, in fact she could climb steps before she could even walk. Also, while she had started saying ‘mummy’ and ‘daddy’, she reached a point when she stopped completely.

During this time, she had also started having difficulty sleeping and would wake up every single night and just scream. It was a very difficult situation to deal with because by then she would refuse to let me hold her so I couldn’t comfort her.

Another thing I noticed was her obsession with the television. She could sit quietly infront of a TV for hours. Again, most parents will tell you that this is normal and I will admit that at first I found it was a relief to be able to get on with other things I had to do but then when we suspected something was not right, the doctors advised us to stop it since it prevented her from interacting with people.

 

Some may argue that these ‘symptoms’ are phases or just the developmental pace of the child.

Yes, and in many cases they might be. But with Mia, things got worse over time. As she grew, we were invited to birthday parties and she hated them. She could not handle crowds and hated the noise. Speaking of noise, we also noticed really early on that she was very sensitive to noise. She would wake up from her sleep even with the slightest of noises. Blenders, grass cutters, anything with loud noises was a big issue for her and she would cry and put her hands on her ears complaining that they hurt. Her biggest fear up until now is those big commercial dryers in malls which still affect her a bit and she will refuse to even enter if she knows they are there.

She also took hyper to a whole new level. I had thought Leeane was hyper, but with Mia I had to deal with something completely new. She could never be still for one minute. She was constantly on the move and that wore me out. At these birthday parties she would not engage in play with anyone and just walk up and down as if she was in her own little world. I could never have a single conversation as I would just follow her up and down. She would scream and cover her ears when everyone would sing ‘happy birthday’ and in the end I decided to just not go anymore.

She also went through a phase of inflicting harm onto herself by banging her head against whatever was next to her, a wall, a table, the stairs, you name it. It was her way of letting out her frustration due to the fact that she could not talk. What could be a simple request would result in constant pointing or feet stammering to get to what exactly she wanted and I had to constantly guess for her. I kept taking her to the doctors fearing she would end up with a concussion or internal bleeding. The doctors kept telling me it was normal and that she was going through a tantrum phase, seeking attention. I kept insisting that there was something else at play here. I re-call one incident where she was sitting on the steps in our house and I asked her sister to go and get her. She heard me and understood what I had said. As soon as her sister approached her she banged her head on the edge of the steps because she didn’t want to be picked up. And that is one thing I would say, she always understood what was going on around her even if she couldn’t speak.

She refused to let me talk to anyone since she wanted all the attention for herself. If I was holding her and speaking to someone she would bury herself in my shoulders until the conversation was over. Having guests over at the house was not much fun since she would hide away in a room or behind the couch until they left.

 

So you were home-based with her this whole time?

Following the same trend I had with Leeane, I stayed home with Mia for the first three years. This was a decision my husband and I made when we planned to have another baby. It turned out to be extremely exhausting. I was very lucky to be living with my in-laws at the time since they helped me to cope with everything that was going-on.

 

Did you know about autism prior to this?

I had no clue about autism. I never even knew it existed before I had Mia. I just thought she was misbehaving. Throughout it all, even when I had moments where I thought something was not right, I kept telling myself that nothing was wrong. It was hard for me to accept that something could be wrong with my little girl. I kept hoping for better days, days when all of it would just stop. I tried everything I could but the situation did not get any better.

A programme was aired on SBC which my mother-in-law saw. All the symptoms which the programme spoke about were exactly what Mia had. She told me about it and suggested that I considered it. The first thing I did was jump on google to learn more. That was tough since google gave me all the worst case scenarios, but I couldn’t help but ignore the symptoms. Still, we were not ready to accept it and kept going on trying to appease the situation as best as we could.

 

This must have been difficult on your family life.

Yes, during this time, the situation put a strain on my entire family. All 24 hours of my day were spent with Mia, looking after her. My husband and Leeane were definitely neglected. We were literally confined to our home. Even light and scents bothered her. She was sensitive to it all. Even a short dinner outing would turn into a frustrating experience. She would again, just run up and down and my husband and I would take turns to run after her. Even a beach trip would turn out into a work-out for me. She got to a point of loving the beach but then entirely refusing to go as she didn’t like the texture of sand any more. She had no concept of danger at all and I had to be mindful of her every single second and be after her. We were lucky that Leeane was old enough for us to explain the situation and she did to some extent understand. Still, it was not always easy. Leeane had always been an affectionate child and she did struggle to understand why Mia did not want her to hold her, touched her or play with her. Over time though, she learned to understand what Mia needs and she is a support for her sister. I know it’s a lot for a kid to cope with but it is what it is. In a way we sometimes felt that she grew up quicker than we had wanted given that she had to learn to live with a sister who had special needs, but the whole family is on this journey together and we had no way of sparring her.

 

And on you personally?

I had become a new person. I must admit it made me very depressed at first and I went through a phase of withdrawal and depression but I had to be strong for Mia and that meant learning to not show emotion and to never break down in front of her. My interaction was with Mia only. Everything and everyone else took second place. Our daily routines changed just to accommodate her needs. There was a lot of frustration as I said before. I was always trying to figure out what was going on with Mia at any given moment. Since she didn’t talk, she couldn’t say whether she was hungry or tired or if she was in pain, where the pain was. It was worse when she was sick and she would just cry. One other difficult thing I had to cope with was physical harm that she would inflict on me as well when she would become too overwhelmed with a situation. She would hit me and she was strong. I will admit it, I have had moments where I lost my patience and screamed and thrown the odd slap over, all of which I know I shouldn’t have but it really got too much at times. I regret those moments.

 

The dinner outing you mentioned earlier, some parents could say it’s generally difficult to eat out with kids anyway. What made the situation with Mia more complicated?

A lunch outing is like overloading a computer with too much information. While a normal person would just sit down and hear what the other person is saying and only focus on their own drink and food, Mia would hear the cars driving on the road, she would hear the cutlery sounds from other tables, smell everything around her. She was unable to block anything out.

It was actually exactly the same thing when I took her to Church. From the echoes, to the ringing of the bell, to the choir singing and people’s perfumes, all of it was information being processed in her little brain which was too much for her and actually caused her pain.

 

So, going back to the test which raised concerns, what happened after?

After the test her situation worsened. The head banging continued, she was hardly sleeping and had started to refuse to eat and was surviving only on milk and yoghurt. At this point, she was battling sensory issues where she could not tolerate the texture of food and its smell. This actually continues to be an issue to this day though it has gotten better and for the most part she is game to at least try the food before dismissing it.

My google searches though gave me some ideas on how to engage her in activities and I started helping her at home. I started talking to her even if she wasn’t listening and selected suitable toys for her to play with. She was still putting stuff in her mouth and choking was a concern. We would sit together on the floor and I would just pick something and initiate a conversation or a game. At the start she would just sit there and ignore me as if she understood nothing of what was going on. Eventually she started participating. She started off with one minute, then two and gradually it got better. The key was once she started showing interest was to follow her lead and make a game into whatever it was she wanted to do. Forcing her to be part of an activity which she had no interest in would get me nowhere. At that point I also noticed that she gained an interest in papers and colours and that became her therapy. It eventually got her to sit down for longer periods and she was able to concentrate more. In fact, her love for art has grown and she surprises us with amazing drawings every single day.

I also had to teach her emotions which many people might find hard to understand. Mia did not know what happy or sad or angry meant. She had to be taught. Sure, she felt them but she did not understand them. When she would see me cry she would know that something was up but she couldn’t identify which emotion it was.

At 2 and ½ we took Mia and went to see Dr Athanasius primarily for advice on the tantrums and not sleeping. When we sat down with her she pointed out all the symptoms which aligned with an autistic diagnosis though the diagnosis was not made since Dr Athanasius is only a paediatrician. She advised us to get more tests done.

 

So, in a way this was the first professional opinion on the matter. How did it make you feel?

To hear this from a professional was crushing. It really felt like it was the end of the world for both my husband and I. But, as soon as I could, I re-visited google again to get a better idea of what I was dealing with.

We started setting boundaries because we knew she could hear us and understood us. We were however lenient as well since we knew how some of it were difficult for her and we did have moments when we would spoil her. Of course overtime she learned to manipulate the situation to get what she wanted! So we always had to rethink of ways to get new boundaries and rules in.

We actually purchased an ipad for her and I downloaded many apps which my research had advised me on giving her, like with numbers, shapes, letters and sentences. The ipad also became useful when we would attempt a dinner outing and had to try and keep her seated for more than 5 minutes.

I started visiting the Ministry of Health once a month and I soon realised it wasn’t enough. I had to learn along with Mia. A proper diagnosis is not usually not possible until the age of three because they have not yet reached a stage where their behaviour can be properly assessed. Until then I did all these activities with her to help her learn. Of course, had been doing some of it prior to any of this happening like all parents do. Something funny I remember now, she could count before she could talk.

 

Did you ever want or search for a second opinion?

Just prior to her third birthday, we took her to Dubai. By then she had a vocabulary of 30 words but was not able at all to structure a sentence. When I met the doctors in Dubai, and told them the background story, they were impressed with Mia’s progress over that short period of time that they even joked about employing me! They gave me further advice on what I should add to the routine and a list of the different therapists we should see from speech to occupational therapy. In Dubai, cognitive delays were recognised. Her motor skills were not on the level they should be for her age. They placed her as ‘mild’ on the spectrum but they explained that the ages between 3 and 5 were critical and I had to continue teaching her as much as possible.

 

The therapists they mentioned, did you manage to find any locally?

Yes, I managed to get the help of a speech therapist, Samentha Michel, who worked with Mia for 6 months. The results were amazing. She went from not being able to say one single sentence to literally saying many. This also had a positive impact on her social skills since she could communicate better with people.

 

Has becoming a member of Pearl helped?

Joining Pearl has helped give me strength. Parents share advice. It also helped me put things into perspective when I learned of other situations which I felt were more complicated than what I was going through with Mia. There are women dealing with this all by themselves without any spousal or family support.

 

What are some of the difficulties with Mia which persist even now?

She still gets nausea in the car where if she is not feeling well or is congested she will throw up. Whenever we have a long ride ahead of us we plan several stops to enable her to get some air. This also has to do with her ears. The balance in her ears is not on the normal level and we often have to battle ear infections, in fact she has just gotten better right now from an infection that lasted close to two months.

I recently had to teach her about emotions again since she forgot about it when she was sick with the ear infection and could not attend school. She had also become aggressive as the pain was too much for her. In fact this is one important thing to note, that they can unlearn what they have been taught if it is not continuously emphasised or their environment changes.

 

Speaking of school, was that a difficult process?

Initially she was meant to attend Independent School since her sister was already a student there. She had her one week induction which went fairly well except for the last day. She had been going for just a couple of hours a day and had missed the buzz of the break period. On the last day, she got a dose of it and was completely overwhelmed. To top it all, she had a little accident on the playground and that was enough to set off a ‘situation’. She lashed out at me and she started hitting me. Having people fuss and stare makes it worse. I get it, it’s human nature and people wanted to help but it was just a huge mess. I started crying too. I was in such a state of despair. Both Mia and I cried all the way home that day.

That same day, I got a call from International School. We did a one-day induction to see the difference and we knew after that day that it was the right choice for Mia. We felt that the teacher was very understanding of the situation after having had prior experience with similar kids.

Right now, Mia knows words which I haven’t even thought her! I know that the early nurturing has something to do with it. The flower is now blooming and she amazes us every single day.

She recently got her reading certificate. Academically, she is excelling and performing beyond the abilities of her age and year. I can finally breathe and not worry about her all day long.

 

What is Mia like now?

The Mia now is someone who lights up a room. When she misses school, everyone looks for her. She now likes being the centre of attention. All this from someone who just wanted to be invisible in a corner. I compare some photos of her in some plays which her school conducted when she started. She’s physically present but you can tell she’s not present in any other way. She hated those plays. She hated being in crowds and the noises that came with them. Now, she always participates in everything. She talks now non-stop. People often comment about her eyes. It would seem she captivates people with her eyes and then blow them away with her stories. I mean, we really have a new daughter in so many ways.

 

What have you learned on this journey?

I used to believe that parents are the one are meant to teach their children about life, but with Mia I have learned that it is the other way round. Our children are the ones who teach us. They make you see life on a whole different level. They teach us to reconnect as human being especially since we now live in a world of technology whereby we are slowly loosing the touch of communication. This journey has made our family stronger. We have a bond which was not there before. The love is stronger and pure. Mia is incapable of lying or hiding how she feels. Her display of affection is always genuine. Having your child be able to call you mummy and tell you I love and mean it is also really nice. Getting random hugs and kisses which I did not before is something I cherish dearly.

I have learned to appreciate life and the little things. We celebrate every little thing. Small moments. We have also learned to be more compassionate towards others given what we have been through.

 

Do you worry about Mia’s future?

We used to wonder about what would happen when she reaches the ‘moving out’ age. Our guess has been that she wouldn’t because she will forever need us but I have to say with her progress in the past couple of years, it is no longer my main worry. We live to enjoy the moment and believe that when the time comes we will be able to deal with it whatever way we see fit.

 

Generally, people have a negative perception the minute the word autism is mentioned. What would you say about that?

Autistic kids are very bright. They have the knowledge but just don’t know how to manifest it. They need the right triggers to experience life in its entirety. It’s all about removing layer by layer.Routine is important. They need to know what happens next and need to be taught the right mechanisms to help them cope with changes. I know that if I hadn’t started the ground work with Mia three years ago she wouldn’t be the little girl she is today. People now ask me why I say my child is autistic since she doesn’t look it and doesn’t behave it. Yes, she may have outgrown the symptoms but it will never truly go away. She just deals with it better and copes with it and has had the support to have a normal life despite of it. She still has her days which not everyone may see but we learn to get through it together.

Funnily enough, Mia reminds me of how I was like as her child. I am positive I am on the spectrum since there are little things which bring back childhood memories. I was quiet and very much a loner. I did not have the support Mia had. Mia’s situation has helped me realise that if I’d had the help she’s now getting how much I could have accomplished and perhaps how different my life could have been at certain stages. I would never regret giving up on a career. I would dedicate my life to my kids and I am seeing so much results out of it. I want parents to know that once you get a diagnosis it’s not the end. Actually it is merely the start. You and your child will grow on that journey and discover so many things along the way

 

So, the work is done?

Not at all. The work is still on-going. Even if she can now put sentences together, there are times when what she says makes no sense and she sometimes jump from one topic to another in one breath. But she continues to try and that gives everyone who is helping her hope.

 

Do you think people in Seychelles have a better understanding of what autism is?

The understanding is far better than what it was a few years ago, but there is still a long way to go. I use my social media accounts to pass on as much information as I can even if some people have said I go overboard. But this is my life and my mission. I talk about it because I want people to understand, to educate and help build acceptance for my kid and other children affected by autism. The kids are gifted in so many ways and they just need the right triggers. One thing I really want people to understand is the difference between tantrums and meltdowns. I have had so many meltdowns with Mia in public where people have looked at us and commented on how she misbehaves. Tantrums is when you are seeking attention to get what you want and a meltdown is when you can no longer cope with everything around you. It’s similar to having a phobia. These kids have too much stimulation and they need to learn to cope. Parents need to be equipped on how to deal with these situations. I learned that I had to take Mia out of the environment which triggered the meltdown. Definitely though, the situation is getting better. People are learning about it every day. Autism awareness for us parents and families is not just in the month of April, for us it’s part and parcel of every single day of lives.

2 Replies to “Unlocking autism with courage and love.”

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