One moment in time

Empathy is a tough one. Every human is born with the capacity to understand and feel what others are experiencing. But psychologists agree that putting one's self in another person's shoes is a learned behavior and that innate capacity needs to be developed. It also varies in different situations. Not everyone will feel the same level of empathy towards the same person at the same time. Our personal experiences, histories, relationship to that other person as well as their own histories and what we know of them all play a role in how much and in what way we empathize. 

And sometimes, there are moments in time that are so universal in their intensities that all subjectivity fades away. 

This morning I had to take Jad for a brain MRI. 

He has sleep issues and keeps waking up in the middle of the night. This has been dragging for way too long and we cannot sustain it anymore. Well, actually, he seems to be able to run on four hours of sleep. But Zombie Mommy is on the verge of a breakdown. Actually the whole house is affected and it is causing unnecessary stress and hardships. And even though Jad is functioning on the outside, sleep deprivation is definitely affecting his therapy and learning. He is cranky and less patient and obviously, sleepy most of the time. 

This is common with people on the spectrum. I have read so many posts from families suffering from the same. 

Our neurologist decided to proceed by elimination in order to assess whether in Jad's case the issue is medical or if it is behavioral and consequently, find the right treatment and therapy. 

The first time I went to the radiology floor at the AUBMC was brutal. 

I had to prepare all the insurance documents for pre-approval and I spent some time there. While waiting in line a man in his thirties stood behind me, waiting for his turn to settle his bill. He was talking to a lady, begging her "you know the truth, you have seen these so many times here, tell me the truth" and she eventually answered "it is bad". He proceeded to tell her how he did his research and read the statistics and survival rates were lower than 10% in that case and he burst into tears. A grown man, crumbling like a child in this strange woman's arms. His desperation hit me like a knife in the heart. That man. So tall. Looking healthy and even handsome. He suddenly became as small as my Jad and all I wanted was to hold him. 

I have no idea what the case was but as he was crying, a wheelchair passed by us. On it was a child, maybe 8 years old. His head was shaved and he looked so pale and frail in his hospital gown. Right behind him, on a bed, rolled another child looking like his twin. He stared at me with blank eyes and it hit me: the radiology floor. This is where all the children come for their tumor scans. My heart sank. 

I hate hospitals. I know they save our lives most times. But there is something about death always lurking around in a hospital. The smell. The walls. The people in the waiting rooms. Just waiting. It makes me sick each time. 

Today I walked in determined to be strong. After all, I had been there before and I knew what to expect. 

We prepped Jad and took him to the MRI room and he was the cutest thing in the world. For some reason, he loved it and decided to climb on his own, without anyone prompting or even asking anything of him. He was all smiles and in that instant my heart was finally at peace. 

And then it happened. The anesthesiologist held Jad's head and two technicians grabbed his arms and legs and they put a mask on his face. All he needed were five breaths and he would be asleep but of course it turned into eternal hell in front of me. They were pinning him down and he was fighting the mask, staring at me, begging to be saved. I kept trying to calm him down but it all looked liked a bad movie. His eyes started to roll back and he kept trying to look at me and then he fell asleep in the most horrible way I have ever witnessed a human fall asleep. It was heartbreaking. I cried. The doctors and technicians were absolute angels. They kept reassuring me and even tried to make me laugh by saying we always forget we need to anesthetize the moms first. Clearly, I was not the first one to cry in that room. 

And then I left. I had to get a nurse from the laboratory to come down and take blood samples from Jad, while he was asleep so he wouldn't fight the needles or the IV. We came back and we met  Jad in the recovery room where everything was also a bit of a fight but this time, he was still out so it made things easier. She took so much blood. And when he woke up, he tried several times to remove the IV but we managed. 

My hero, My Jad 

As we waited for him to be completely awake, a child rolled in his wheelchair. Head shaved. Bandage on his chest. He looked grey. His mother was a shadow of a human. She looked at me, nodded and then started to look frantically around the room. She wanted tissues. I directed her to the sink and she hid behind the wall and cried her eyes out. The second her son realized she wasn't by his side anymore, he started crying, calling for her. I swear, I died a little. He was probably 9 but he looked so helpless and afraid. A child calling for his mom in fear and desperation. She came back running and he calmed down instantly. It all took seconds. It felt like hours. A nurse came and talked to him and that boy, so small and so helpless asked "you will make me sleep and I will not feel a thing like my last surgery right?" and I looked at his mom and both of our hearts cried. he had been there before. He had be under the knife before. And there he was, again. How unfair and devastating. I walked to her and she knew I was feeling all of her pain if that was ever possible. I looked at him and told him what a cool mask he had on and what a hero he was for being so strong. He smiled a little while his eyes were screaming "I am not strong, I am so afraid".   

And I turned and cried, with that mom. Silently. Hidden from our children. 

And in that moment I wished so hard for God to exist and miracles to happen. I am not an atheist but this time, I really needed God to be there more than ever and actually do something. To save that boy. To save all the children. 

Life is not fun. 

Humans are so fragile.

And sometimes it just hurts to be alive. 

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The Extraordinary Challenge of an Unusual Daredevil

My six year old son, Jad has Autism. 

We have known since he was 15 months. Even though his case is not what I would personally qualify as severe, he remains non-verbal in spite of all the years of speech and other therapies he has bravely tackled. 

These sessions have been imposed by us, his parents, obviously. He has never asked for any of it and I am certain, if he could verbally convey his thoughts, he would probably ask us to leave him be. 

Jad Bou Onk: Not your basic hero

Therapy is hard work. Every session is draining both physically and mentally and yet, Jad makes great efforts to persevere with our demands. 

We are lucky to have found brilliant therapists who are now making these additional mandatory endeavors slightly less exhausting and more fun. Still, I always feel all of this is so unfair to such a young child who does not really know why it is happening to him. 

Let me be clear though: I am grateful for these therapists and their hard work and I know ultimately, Jad is benefiting from all of this. Nonetheless, my softer mommy side cannot help but feel bad for him. 

I also need to be clear on another pivotal truth: we would never try or want to change Jad. He is the most perfect little person just the way he is. I would love to be able to change society though but that is another story. 

Instead, as we stand powerless facing this society which can be ruthless to people like Jad, we work hard to give our son tools that will allow him to find some happiness and contentment when he ventures into this (unsympathetic) world. 

"You may say I'm a dreamer"

My son, that superhero who traded a cape for a glider!

Every year, come April, I try my best to spread some awareness on social media. Families like us, healthcare professionals, therapists, educators and people from all walks of life rally and join forces with one goal: educate. 

It is crucial for us to speak of the fears, challenges, struggles and daily obstacles our loved ones face. It is also important to shed light on the kind of support they require. 

Because every human being deserves to live with dignity. It is a fundamental right and not an issue to be debated.

When we speak of "special needs", the common reaction can be apprehensive. Misconceptions are frightening and they often project people with special needs as a burden on society.

That is the sad truth when we decide to abandon these people to a fate of loneliness and segregation. 

However, if we educate and empower them to become active members of our society, all our expectations shift. If we give them the tools to be able to contribute positively and be independent, they no longer become burdens. They become a valuable asset we can rely on in so many ways. 

Gearing to for an extraordinary adventure

Superheroes do not need capes, a brave heart and a genuine smile will take them beyond our wildest expectations

That is why this year I chose a different angle for Autism Awareness Month. 

Instead of focusing on our struggles and challenges, I decided to shed light on Jad's strengths. 

This year I wanted to speak of abilities instead of disabilities. 

My little boy has autism but autism does not define him. It is one of so many characteristics that make the complex and beautiful person he is.  

Jad has so much potential, I cannot help but stare at him in awe. My heart races and sometimes I can hardly contain my excitement at the sight of him and how he behaves.

On Saturday March 31st, he did something not many of us would do: he flew. 

Flying is such a powerful action and symbol and is so accurately representative of who Jad is and who he can be.

He has so much courage and strength and his abilities may differ from the norm but they are brilliant nonetheless.

My son is fearless. 
He loves life and the world. 

And he flew above society, above stereotypes and negativity.

He flew with bravery and heart. He smiled at the clouds and laughed with the sea as he soared over Jounieh.

All smiles after a fantastic landing!

Paragliding Jounieh supported us in every way and truly enabled Jad to show his potential and go beyond what is usually accepted as his limits. They did it with complete professionalism, but most importantly utter kindness and love for Jad.

Dream Team

As I will never get tired of saying: Jad is absolutely perfect and he truly is the best version of himself. I would never wish him any different or would never think of changing him.

What we strive to do is simply what any parent does on a daily basis: empower him to go beyond stereotypes and obstacles and give him a chance to show the world his true potential.

Our main goal on that special day was to focus on different abilities rather than disabilities.

The People of Determination as they are now rightfully called in Dubai are truly exceptional and show us everyday that differences are not less. Differences are beautiful.

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Winter Girl Looks For Summer Purpose

I was born right in the middle of winter. I’m not sure if this has anything to do with my utter aversion to summer but one thing is certain: I hate it. 

I cannot stand to be in the sun, heat drives me insane and I am disgusted with the feeling of being hot and sweaty and sticky human skin. I have never enjoyed the beach or the pool and the idea of spending hours in scorching heat just to get a tan revolts me. (Yes, I know, what better place to live in than Dubai?) 

I begin to stress and nag before the season starts, just thinking of what is to come. 

And even though I am in cool Ehden right now, where the clouds are literally underneath us, I still find it difficult to enjoy my time. It is not hot nor humid and a lovely fog has been visiting us for the past few days which makes my heart smile. But still, I cannot bring myself to be content with the blessings of spending the season 1500m above sea level.

So I decided to look for reasons. A sense of Summer Purpose if you will.

Every time I am in Lebanon, I stumble upon objects from the past which make me smile. An old diary. Photographs. Books. Cassettes. They take me back to a place of serenity and calmness. If I want to be honest with myself, they were anything but calm when I lived them. But I guess, looking back, they seem quite peaceful (thank you selective memory). 

However, I will attempt to find new, current reasons to enjoy (read: tolerate) my summer. Romanticizing the past will not shorter my days nor bring more fun. The whole process might make the present even more depressing.

Since very few things seem to work these days, I should probably stick to a simple exercise. Maybe find one good, positive summer attribute for each of my senses. Come on, I can find five little things right?  

So, here we go:

Summer Purpose through the senses

Sight 
That one is quite easy. Our home overlooks one of the most stunning views in Ehden. The clouds are literally underneath us and the sunset is breathtaking every single evening. The moon sits rights in front of our swing and if we tilt our heads a little, the stars are almost at hand's reach.

Source: IG

Hearing 
I guess I could mention the crickets or the sounds of happy people celebrating weddings near us but I guess my most favorite sounds are those of Mia and Jad laughing their hearts out in the garden. They are so small and the little things makes them happy. And this alone blesses my soul.

Source: IG

Taste
My mom's cooking, real kebbe and home-made sahlab. My dad bringing us kaak from Abou Arab every week on his way from Beirut. All of those but maybe also the iconic mshabeshle or even Salem's Arabic ice cream? Or is it biscuits with raha? So many delicious treats that I can only find here. This is not helping at all. I am still struggling with my diet so I probably should have skipped that entire part...

Source: IG

Source: IG

Source: IG

Source: IG

Source: IG

Smell
The other day I woke up to smell of freshly made sahlab and I swear I was in heaven for a few minutes. I just love it and even though I have made it a few times in Dubai, there is nothing like having a fresh cup in the garden, looking at the mountains and taking deep breaths of crisp air. (Looks like I am back on food. Great).

Source: IG

Touch
Well that is a tough one considering the husband is not in town. (mwahahahaha)! I guess this is a constant in my life: holding my kids' tiny hands while they sleep. Thank God, they are still small enough to let me do it. They keep growing bigger and somehow, when I hold their little fingers, they seem so tiny. They give me so much warmth and in that moment I can actually see the immensity of my own love. I never thought a heart could expand so much but it does. Bigger than the universe and more.

Baby Mia & Mamma Mia

Baby Jad & Mamma Mia+Jad

Tiny humans. Giant love. 

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Going beyond April

Today is April 15, that means Autism Awareness Month is halfway through and in a couple of weeks, the word "Autism" will start to fade on our computer and mobile screens and consequently, in the lives of many. I am not trying to be dramatic for effect, but it is the reality. Autism Awareness Month is indeed coming to an end and soon, most lives will be free from that concern. 

But there is one thing families with Autism know for a fact: we have Autism all year round, all the time. No expiry date in sight. It is a reality we have to live with. 

Following April 2nd, World Autism Awareness Day, all I could see on Facebook and Twitter were articles and blogs on Autism (which was amazing, emotional and inspiring all at once). I found myself scrolling frantically, attempting to filter those I thought were really worth sharing without spamming the friends who followed my posts on social media. Inevitably, I ended up jamming a million posts in only a couple of days and naturally, as time passed, fewer articles were showing and I had to actually search for new ones to be able to share at least one story a day.

So how do we keep the momentum going? 

How do we continue educating others and bettering society for all of us, not just the families affected by Autism?

An open-mind, an open heart

First and foremost we learn Empathy and we teach it. Just like any other skill, it can be taught, it can be learnt and it can be perfected. There is nothing weird about that, really. Ideally, humans should be able to feel with their peers and other creatures and know right from wrong. We expect these abilities to be innate. They really are not. Growing and bettering one's soul is just the same as developing our physical and intellectual competences. If good health implies a healthy mind in a healthy body, then Empathy is an exercise for the soul equally important to workouts that keep our bodies fit or intellectual stimulation and challenges that keep our minds sharp. We must seek it. We must enforce it. We must practice it. Being a responsible human being implies so much and it is not easy but it is a must. Responsibility towards our Earth, our peers and all living creatures will ensure our survival on this planet. We need to understand we are all connected and the pain of one is the pain of us all. Or at least it should be. In this way, ignoring others is betraying one's self and solidarity with one is solidarity with all, and with one's self. I am not speaking of religions or spirituality here (not that there is anything wrong with that) and nurturing one's soul is not a distant abstract concept. Empathy is real and universal to all.

Less judging, more acting

The ability to understand and share another person's pain is commendable but it is not enough. We must act too. So when we see a child (or an adult for that matter) literally exploding in one of those terrifying tantrums, or suddenly running away for no apparent reason, or expressing violence towards another or himself, let us refrain from judging. I hear it too often here in Dubai: "kids in this country are spoiled and their parents are not doing their job and setting boundaries". That is so unfair and absolutely not true on so many levels. Each human being is a different independent person. Children are not robots. The assumption that because a child is acting out of societal norms, it automatically means parents have failed and that child is "bad" is outrageous. Let us spare ourselves and others the waste of time that is blame. It is not conductive to positive change or constructive efforts. It simply dumps responsibility on others so we do not have to bother ourselves with the burden. But that burden is ours, all of us. Society is ours. And when society outcasts people because of their differences, it makes it harder for those individuals or families to help themselves. However, when we all feel it is our role to act and try to rectify a certain situation for the better, then things start to fall into place naturally and everyone's lives become easier. Condemnation and vilification are easy. Involvement on the other hand, is much trickier. Be present and be involved. For your own sake and that of others.  

Integration

Being involved and transforming our society into one that is more accepting and open-minded will lead to better integration of all its members. As parents of children with Special Needs, we are always actively looking for organizations and institutions that offer inclusive programs and policies. In academia, in sports, in arts. In Dubai, it is illegal for schools to reject students because they have special needs. That does not mean that it does not happen. But as parents you think, why would I want to force a school to accept my child when I know too well that they refuse to help him? Luckily we also have a wide array of mainstream nurseries and schools that offer integration within certain frameworks like shadow teachers assisting on site. That is definitely a blessing, but a costly one. Therapy, shadowing and schools tuitions are not covered by insurances and it can get quite expensive, very quickly. In my humble opinion, I think all institutions, public and private should be inclusive. It should be done in a proper way so that the child with special needs, the classmates and the school's staff and faculty all feel comfortable and can build, teach and learn efficiently. Ultimately, schools are like micro-societies where children learn how to behave within their communities. It is how they grow to become well adjusted, functioning adults. If we want our children with Autism or other special needs to be able to live happily as adults, they need to experience these micro-societies too and they need to learn how to navigate social situations. This understanding of communal behavior can only come from exposure to others. 

Special Needs Centers

Sometimes, special needs and disabilities can make integration difficult. Some children might pose dangers to themselves or to others and they need to be cared for by experts within specialized, safe environments where understanding and help are constants. These options are wonderful and allow children and even adults to discover talents and hobbies they enjoy and maybe even build skills that can lead them to become a little bit more independent, be it for daily tasks like eating or using the bathroom to more complex abilities like achieving a certain financial autonomy (some institutions even secure jobs and placements within suitable workplaces that welcome special needs). In that way, special needs centers are admirable. However, we need to always be careful and make sure the organizations we choose are indeed providing all of the above and more. 

And as a society we need to remember that these centers are not an easy way to alleviate guilt and relieve ourselves from responsibility. It is not because these centers provide a safe, constructive environment to people with special needs that we are no longer responsible for being supportive in mainstream places and situations. 

Special needs are not annoyances that interrupts our daily lives. The solution is not to just place these people in specialized centers. They spend a great deal of their day there but at the end of the day, they get out to the "outside world" and they have to face, well, us. 

Special needs are realities of our daily lives. We cannot dismiss them. We cannot avoid them. We must learn to open up to them and to the wonderful array of possibilities and potential they can bring to our world. 

This is how we go beyond April. This is how we push further than just a single month a year. Educating, raising awareness and dedicating a day or a month is truly commendable but it is only a stepping stone to inspire, stimulate and cultivate new ways of thinking and acting and hopefully on the long run, create new policies and behaviors. 

This testimonial was written for Mums Like Us.

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AutismLove

Jad turned four a few weeks ago. In a day, all media around us will start talking about Autism and featuring stories of other children and adults and families living "on the spectrum". Because incidentally, Jad's birthday is closely followed by Autism Awareness Month/Day.

It is good. It helps. We need more awareness and we need to educate people because there is still so much to be done for our society to be truly whole and equal. Integration should not be a particular effort we are praised for.  Integration of all people, all kinds of people, should be the natural order of things in our modern, informed world. It is not though. And this is why Autism Awareness is so important.

But every time I want to write objectively on what Autism is and what it means and maybe how and what to do, I just freeze.

All I can think about right now is Jad is four. Jad is growing. He is absolutely beautiful. But he is growing. And as much as it brings me joy and pride to see him grow into a loving, fantastic little boy, to me right now, it also means, another year has passed and Jad remains non verbal.

Of course the reasonable part of me has accepted that Jad may never be fully verbal, or not at all. I have read enough to understand that this is a possibility.

It is a good thing I am typing right now because usually, at this point of the conversation my voice is already breaking and burning tears are rolling down my cheeks even though I truly do not mean to cry. So I guess I am grateful for that other part of me.

The mommy part that still hopes in spite of all the reasoning. It is timid. It does its praying on the inside,  in silence. Maybe it doesn't want to jinx it. I don't know. But that part hangs on to that story of a few children who finally said their first words at eight. Eight is a good number. I like it. It is arbitrary. It means nothing from a scientific standpoint. But I like it. It gives us time. It gives us another four whole years. Who knows what could happen in four years, right?

And then there is the reality. Not the pessimistic me. Not the hopeful me. Just the every day me. The one who lives with Jad in every moment of his life.

That me is sad today.

Don't get me wrong. I am not a sad person. Jad gives me joy a thousand times a day.

But still, if I have to sum up and rate my day in one word, the rating would be "sad" for today.

I can't help but play that one afternoon over and over again in my mind. We walked by the marina at Festival City and there was this awesome set up of games and food stands for kids. Mia insisted on playing mini-golf so her dad took her while Jad and I stayed on the improvised wooden stairs that served as benches in front of a small stage. He loved it. He was free to run along while I could be at peace knowing the space for this freedom was well defined within actual wooden borders. All he did was run back and forth on one bench. Over and over and over again. He seemed happy. He was laughing and "saying things". I don't know what. Not words. Just sounds. But I was relieved he seemed and sounded content. And then he suddenly stopped. He just sat there, staring in the distance, babbling calmly now, almost whispering to himself. So I looked to see what might have caught his attention. I couldn't tell. I asked him and of course that was silly. He had no way of telling me and I had no indication  he had even understood my question. Still I touched his hand and asked again. He just continued his babbling as he released his little hand from under my fingers. And my heart broke.  I stared at him in silence while he babbled staring in the distance. And I fought the tears because you don't want to break down and cry in front of your children. Or an entire crowd of strangers for that matter. I just kept on doing the only thing I could do. I watched him talking to himself in his little bubble and I just prayed. I just prayed he was happy.  I wanted so badly to know what he was feeling in that moment because as a parent, all you want is for your kids to be happy and to be able to be there should they need you. And for lack of better options like, I don't know, read his mind or something, I just sat on that silly bench praying he knew I was there and hoping he didn't need more than that in that moment. And hopefully, that he was happy or at the very least not sad.

All this talk about me and my feelings. While I know it is not about me. But I guess today I need to let some of it out because it is stuck in my throat and I am suffocating. Tomorrow is another day and things will be better.

Jad may be the one on the spectrum but our entire family has autism. And if there is one thing people can take from this testimonial, it is this. Be kind and understanding to families with special needs. We run out of patience with the world because patience is a luxury we need to save for our difficult moments at home. Give us space. Give us understanding. And most importantly, love our children. Because the one fear we have is to one day leave this world and abandon our children at the mercy of a tough and often cold society.

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On that piece of me that has a life of its own

The Internet is very proficient. It speaks poetry, it speaks verses, it speaks proses and it even speaks Inspirational the best. Very few of these quotes resonate with me. Very, very few. But sometimes, there will be one that stands out. No matter how corny and boring and "oh please give me a break" it sounds. Usually, if I will buy it in spite of all that, it is because it speaks of my children. I am a sucker for mommy beauty, what can I say? Guilty as charged. 

Source

One of the many "quotes" we see now and then, plastered on some nice photo of a child and a mother is:

'Making the decision to have a child - it is momentous. It is to decide forever to have your heart go walking around outside your body.'

- Elizabeth Stone 

Cheesy, I know. 

Also, very, very true. 

Say what you will. Some things are just meant to be cheesy.

Anyhow, half of my heart not only walks around, runs around and monkeys around with his bigger sister. He also is extra special. Not the kind you want your children to be though. The kind people use as a label to try and understand how to go about dealing with and maybe fixing your child. Special needs they are called.

My Jad is on the Autism Spectrum. 

It is a spectrum you see. It is no longer one disorder classified in a rigid box. Which is fair, since to be honest, each autistic person is very different from the next and their individuality is what makes them so wonderful and unique.

I hate labels.

"Autistic".

It means absolutely nothing. Just a word.

But each autistic person defines it in a personal way, in a different way, in a sometimes utterly beautiful way, sometimes in a brilliant way and sometimes in very difficult and hard ways.

But what it means mostly, is that it is not a mold. Not all autistic people fit in the same box. And that is wonderful. Because it is what it means to be human.

And that is what we need to remember first and foremost: the human side.

People.

Like you and I, struggling to understand this world and make the best out of this life. We are all the same in that quest, right?

THE BEAUTIFUL MONTHS 

Jad was born in Lebanon in March of 2012. It is his birthday soon. My little love will be turning three. The light of my heart and soul. Growing every day. Becoming more and more beautiful with time. My love.

He spent the first six months of his life in Lebanon because we were a little lazy. We figured, "hey, it's March. We should be back here in a few months for summer. Why not just stick around and go back in September?" Which is exactly what we did. Back then Mia only had nursery and it was not like she was working hard on getting her PhD. We could afford the time away. It was a wonderful time too. We had family and friends around. The kids loved it. And me too.

Jad was growing and in those first months, it does look like they change by the minute! He was laughing, playing, singing (or something that he intended to be musical) and was your "normal" baby by any developmental standard out there, medical and psychological.

When I watch videos of him back then, I just cannot understand. I cannot believe. He used to be so much "with us". With his grand-parents. Especially my dad. He would even call him in a special way that sounds like the arabic word for grand-pa. By the end of these six months, he had actually learned to say "bye-bye" in context, while waving his cute, tiny hand. He could say "mama" and "jedde" (the word for grand-pa). He would imitate and repeat. He was talking funny but nothing to be concerned about. Like all babies. Baby talk.

Every time I would post a photo or a video of him on Facebook, people would tell me to stop because of "evil eyes". (Arab people are so funny)

He was always so happy, always smiling and laughing. It was contagious too! We would go out and within minutes he would have an audience and everyone would be in love with his smile and laughter. It was even a little frustrating for me because it would take so much attention away from his sister and I would hurt inside seeing her so lonely in those moments. People would literally block out everyone and everything when Jad was around. He had that magical power. That charisma. 

THE TRIGGER 

Finally, September came and we returned to Dubai. It was a total shock for the kids. Mia started school so she got busy and distracted which was great. But Jad ended up in an empty house, all alone with me. A very busy me. A me who had to take care of chores and left him to play by himself for hours. Which he did without complaining or nagging. His dad had to start traveling a lot and with his sister away all day, he found himself quite lonely in a quiet house. No more neighbors, no more grand-parents, no more aunties and uncles. Everyone was gone.

Within a few weeks, I started to notice he was sad. His dad and I thought he was being a little depressed and missed all the fun and crowd of Lebanon. But it got worse. He quit looking at us. He would not respond when we called out his name. He literally stopped laughing and even smiling. Nothing. Not a reaction. He would just sit there, by himself. Uninterested with us or his surroundings.

It just broke me. 

My child had been so unhappy he quit smiling. He quit making eye contact. He quit answering when we called his name. He basically had had enough with us. He quit us.

Or so I thought.

I take it back. "It broke me" does not even begin to describe how I felt.

A NEW REALITY 

The trigger might indeed have been the trip. But it was bound to happen anyway. There are two types of autism. The kind children are born with and which are easier to identify because they show quite quickly. And there is the other kind. Jad's kind. There was no way we could have known.

It is called regression.

The child is born and develops completely normally until some time around 15 to 18 months, all development slows down or worse, comes to an end.

When we noticed, Jad was so young no medical expert would label him. After all, many children his age are late with the same milestones. And what would be the use of labels, right? What would they achieve?

His neurologist even told me something that would stick: "What is normal, anyway?"

I absolutely love that.
It encompasses so much truth.
And hope.
But mostly truth.

He said something along the lines of everyone facing challenges in certain areas, social, intellectual, etc. It is the depth and amplitude that these challenges take that can differ and in the case of Jad, they make some of these challenges a little harder.

I mean it is true. If I am standing in line and people start to push and the people in front of me are not moving, I start to get stressed and quite frankly in some instance, I wish I could just scream at them all and push them away and just get it done with. That is why I no longer stand up when the airplane lands. I wait. And wait. And wait. For everyone to disembark. Then, when that narrow aisle is finally empty, I stand up and walk and breathe normally. Some people are claustrophobic. Others are OCD.

Each and everyone of us has something or some things. We just learn to deal with them. And that is what Jad should learn too.

With the right therapy and tools, he can.

So we agreed not to label him but we also agreed that he had autistic traits. And most importantly, we set a plan to work on these traits (in no particular order of importance):

1. Jad's poor eye contact
2. Jad's speech delay
3. Jad's interaction with others
4. Jad's (non)response when his name is called
5. Jad's tiptoe walking

That is referred to as mild autism. Because if you compare it to what other autistic children and adults must deal with, what delays Jad or brings him stress is far less dramatic than the lists others may be burdened with. 

We got lucky, I guess.

The first step we took was speak with a friend of a friend who is now Jad's Speech Therapist. She recommended we immediately enroll him in a nursery as this time alone at home was counter productive to the work she would be doing in therapy. Jad also started Occupational Therapy to work on his sensorial and motor skills development. 

So we picked a nursery. Since our hope has always been to have both our children in the same school, and since Mia's school is French, we looked for a French speaking nursery. We got so lucky with our choice. It was pure luck but they are absolutely fantastic with Jad (and us). I have cried for month in their office while both Jad and I were trying to adjust to this new reality. 

The speculation that followed was silly and cruel to say the least. People who have no medical background whatsoever or any education or even insight on healthcare would ask "Did you have a normal delivery? Do you think the induction is what caused it? Maybe it was a vaccine, I heard vaccines can cause autism?"

Nope. None of the above were the reason.

The fact of the matter is, we do not know what the reasons are.

But I do know for certain that induced labor did not cause Jad's autism. I was induced with Mia too. My mom was induced three times and myself and my two siblings are just fine. And I am certainly not going to blame immunization! I believe firmly in herd immunity. And let me say it now, I would take Jad's current condition and all the hardships any day instead of having to watch any child suffer or even die of an eradicated disease or something as silly as chickenpox. I am not claiming that vaccines may not contain harmful chemicals. It is a probability and I am certain profitable companies will put gain before health. However, I will trust that these chemicals are still safer than the return of the plague. Or whatever could have similar consequences.

WHAT IS NORMAL ANYWAY?

A little over a year later, I can say that Jad is now doing much, much better. We were lucky indeed. Lucky it is mild but also lucky we caught it early on.

EARLY INTERVENTION IS A GREAT FACTOR FOR SUCCESS. 

Many people waste precious time dismissing signs thinking that other children take time or are late reaching these milestones too. This may be true. Or not. Why take the chance when time is of the essence to resolve these issues? Any sign should be taken seriously.

Other people will simply ignore the signs. Denial will only harm the child as zero effort is made by the family, surrounding environment or health experts to try and help. It is OK to say, there is something wrong with my child and I will do all that is humanly possible to help him beat this.

I am so grateful we noticed the symptoms early on and decided to act quickly. Jad is doing so well now. His eye contact is fantastic. He loves nursery and being around his friends. If he stays at home for too long, he will look for his backpack and grab my hand and walk me to the main door, in an attempt to make me understand he wants to go to school. His interaction with his peers is not there yet. He will parallel play mostly but at least, he loves being around them. When they sing and dance, he will participate and laugh wholeheartedly.

Oh thank God for the laughs!

I cannot even put into words what it means to look at our child and do all you can to have a connection and hopefully make them smile while all they do is stare in the distance, at absolutely nothing and most painfully, certainly not you and not laugh or even smile.

That is death. That is my heart dying. 

But thank God, we are passed that. Jad now cuddles, makes eye contact, and not just with me. With everyone now. And he will smile. A social smile (a reaction to something that he finds nice or funny). And he will laugh. With all of his heart and soul. And this is when all of my heart and soul come back to life. 

Of course we still have a long way to go. Jad still does not utter a word. He babbles. Mostly baby talk. But no words. Not even two-syllables. But we are actively working on that and hopefully, things will improve. We do not hope he will one day graduate from Harvard. That could happen. Why not? But that is not our goal and hope. Our only reason for all of this is his happiness. We just want a happy son. That is all. The rest? We could not care less about. 

Right now, we are also rectifying his tip-toeing. While Jad used to alternate between flat walking and tip-toeing, he reached a state of exclusive tip-toeing as a method for walking. His little toe bones are not strong enough and on the long run could be damaged and deformed. He could also end up needing surgery. So we approached a fantastic surgeon with extensive experience with children similar to Jad and he put him in a cast for 6 weeks effectively forcing him to keep his feet flat at all times. Now we have moved him to special orthopedic shoes which look like boots. They keep his feet flat too. He has a day pair which is flexible around the ankle and allows his brain to train and recognize how his foot should operate to walk. And he has a night pair which is like a cast (no movement). We hope that within 6 to 9 months, Jad will have reprogrammed his brain to walk normally.

THE WONDERFUL PEOPLE AROUND US

If you ever feel like you need to speak to someone or have doubts about your child, do not hesitate. 

Trust your instincts. 

When people were telling me "Oh it's OK, he just misses Lebanon, he'll come around" or "All boys are late, don't compare him to his sister, he will talk in due time", my gut was telling me something else. 

All these people were meaning well, of course, Bless them. They were as worried as we were about Jad and were looking for hopeful answers. 

However,  and I cannot stress it enough: listen to your gut. No one knows your child more than you do. And that survival instinct you have, trust it. 

So if you ever should need them (God Forbid), here are our people, our rocks, the ones we count on:

Souad El Sett, Speech Therapist (UAE)
Contact: KIDSfirst - +97143485437 

Lamia Bourayou, Nursery Director (UAE)
Contact: Le Jardin Enchanté - +97143486788 

Nayla Merhi and Pathy Bou Rada (LEBANON)
Judy Jreige (Speech Therapist)
Reem Chamas (Occupation Therapist)
Contact: North Autism Center - +9613840440 

Dr. Saada Alame, Pediatric Neurology (LEBANON)
Dr. Joumana Alame, Pediatrics
Contact: CMC - +9611372888

Dr. Michael Vohrer, Pediatric Orthopaedic Surgeon and Foot Surgeon (UAE) 

Contact: The Children's Medical Centre - +97143282664  

   

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