Tuesday, February 10, 2015

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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