Loud and Clear

I give another nod of acknowledgement. I heard you.

You have been saying the same sentences over and over and over again for the last several hours.

Sometimes I respond each time but other times, like now, I'm tired.  I feel like a bad parent. Instead of trying to engage I just unplug. I zone out, thinking about the grocery list or what I have to do at work tomorrow. Its a way of protecting myself from going mad hearing the same things 10, 20 or 100 times.

Many children on the spectrum have echolalia--a repetitive speech/sound "tic" of sorts. Its a type of "stimming" behaviour. Some kids flap, some rock, others spin and some repeat sounds or words over and over again. Sometimes you do it when you are anxious or to calm yourself. Other times you do it just to fill the space of quiet.

I remember there was a time a couple of years ago we weren't sure if you would even speak. The thought of not hearing the word "Mommy" or you to respond to us was unbearable. Thankfully, through years of work and speech therapy you are speaking. And this is why I feel bad...because I sometimes remember and relish those days when I could spend a day without hearing the constant repetition of a nonsensical sentence.

Your language has come leaps and bounds over the past two years, however, you still don't have conversational language...the ability to do a back and forth banter with someone else. You give short, one word responses. Usually "Yes" or "No".
Sometimes you will make a complete sentence and that is so exciting for us.
"I had a good day at school" was the best thing I've heard in a long time.

Unfortunately, those statements are few and far between and more often we hear the constant repetition of randomness:  "There are no seals in the pool. Lobsters won't hurt you. Frogs live in water."

I'm encouraged because you've come so far. You want to tell us so much but right now its hard for you to express everything you want to say. It gets frustrating, I know. You want to talk to kids but when you see them all you can tell them is "Christmas animals won't hurt you".  Invariably they don't understand and you will have to try again. We work on it, we teach you that its ok to stop and think about what you want to say. That sometimes it will take a long time for you to say things and that's ok. We will be patient. We will wait. Just like we waited three years to hear you say "Mommy" or "Daddy" we will wait to hear you expound on your day at school or to watch you chat with a friend. It is coming, I know it is.

So in the meantime, I will be patient. I will listen to the same statements that you say, over and over and over again. Sometimes I will respond and interact and sometimes I will just nod. I have learned to "hear between the lines". I know that sometimes your echolalia is because you are anxious and I will try to help you through that. I have learned that sometimes your repetition is from excitement and joy and I will show you how to enjoy the moment without screaming those sentences aloud.
I will hopefully show you that sometimes, nothing needs to be said at all. Most importantly, I hope that you can learn that sharing your thoughts with others can help you exchange ideas and most importantly, gain friendship and love. All this will come in due time. I know it will. Its our job to help you figure out the ways of our world while you teach us the rules of yours.

And every night when I tuck you in to bed, I always say "I love you Noa". Sometimes you will look at me and sometimes you won't but you always respond. You always say "Yes" and to me, that means "I love you too, Mommy"
I heard that Noa. I heard that loud and clear.

My Imaginary Friends

I have a group of friends at my son's school. OK, maybe the word "friend" is a bit of a stretch in the normal sense of the word. In the normal context, a friend is someone that you know very well. Someone that you care about and share interests with. In this case, these people don't quite fit that definition. I'm not sure I know the last names of any of them. There are two that I'm not sure I even know their first name. I don't know where they live, nor have we really spoken outside of school or parties. But these people--these moms, dads and caregivers are my Band of Brothers so to speak. Our children are all in an AMAZING preschool for autistic children. The goal is to get them the skills they need to attend "regular" school with "regular" children once they finish. We have been together for the last 1-2 years watching, hoping and yearning for our kids to get to the point of graduation. Some only need 1 year of intensive therapy--others, like Noa needed 2 solid years before he could matriculate into a "regular" kindergarten.  I know these people and they know me. Even though we don't share neighborhoods, phone numbers or outside interests (not sure any of us have time) we share the same hopes, anxieties and dreams for our special little ones.
Somehow, after a short period of time, we came to understand each other's worried looks, sad faces and faces beaming with pride.

There was a time that every Wednesday that I dropped Noa off was horrible. He would fight and cry and cling to the door and it would take forever to get him in. I would leave, stressed and feeling like a failure, half expecting the school to call me and tell me that Noa needed to be picked up. My fellow moms and dads in the struggle would see and give me the "nod" or a quick arm squeeze that would tell me that everything would be OK and that they too had been there. I think in a "normal" school Moms and Dads would say "Oh, its going to be alright. He'll be fine." but my People know that things like that are just hollow words and not at all reassuring. We know that sometimes its not fine and that a minor meltdown can escalate into a major mess and we have to pick up the pieces to put things back together.

We celebrate the little things, that our other friends won't really appreciate.  About how our kid was able to make it an entire day without being put into a sensory suit, or how he made a complete sentence or how he was able to introduce himself to another person while making eye contact. We comment on our kids accomplishments, we quickly talk about therapies, diets and things we've heard about in the hallway on the way to and from pick ups. We celebrate the mundane because we understand how much work it took to get to that little moment. We don't take things for granted. We appreciate each other. I appreciate that we don't have to lie to each other. We don't talk about going to dinner or grabbing  a coffee because honestly, we don't have the time. Between jobs, other kids, spouses, and family we are barely carving out moments to just BE. I know that and THEY know that and we are happy to exist in that "OK-Maybe-One-Day" space. We know that maybe one day things will be different and our children won't need as much time and energy but for right now we are doing as much as we can with very little time and energy.

Nothing excites us more than a birthday party. Because this is one of the few, fleeting moments that we get to come together to truly celebrate. We get to talk, to catch up and most importantly, our kids get to go somewhere where they aren't the "only" ones. We don't have to explain to the other moms why our child acts "odd". If one of our kids has a sensory meltdown we don't bat an eye and protect each other from the disapproving gaze of others who don't know what's going on. Its lovely not having to explain to everyone around you that your child is different. To just relax and let my guard down because I know they all understand. We are all in the same struggle.
All too soon it will be time for Noa to finish this school. We will go on to "regular" school where we won't know anyone and where I'll have to explain to everyone that Noa is different. I will miss those understanding looks, those supportive nods and those quick talks. I will miss the solidarity and support.  I'll even miss the Moms and Dads with no name. 😉 They were my very REAL best friends.

Your Blues Ain't Like Mine

Noa sees things that we just don't see.

He sees the extra angles that differentiate a dodecahedron from a decagon (go ahead, Google it, I had to 😉).

He sees shapes and numbers in everything around us.

He sees colors. Not just our mundane reds, blues and greens. He sees crimson, ceylon and hunter. Some how Noa decided that one of those colors was his favorite. It was blue. Not just any blue but a royal blue. The blue that had the perfect balance of yellow and green that wouldn't make it too light or too dark but sufficiently vibrant. He could find the blue anywhere. If we were out and he'd see a sign with "his" blue he'd sit and want to stare at it. I made the unfortunate mistake of finding a shirt with just the right royal blue. That shirt became "blue shirt" and he would ask for it all the time. Getting him out of the shirt was almost impossible and the tantrums that would ensue after trying to take it off were epic. It became a way to control him (to a certain extent)—

"Ok Noa, we are going to go in the store, if you are a good boy you can have Blue Shirt when we get home"

The even mention of the “Blue Shirt" usually caused him to perk up and to stop whatever behavior that was brewing.

The shirt love expanded. I went so far as to buy more of the “Blue Shirts”. I combed kids stores in search of the blue. I knew his blue but sometimes I was off. My eye couldn’t discern the exact blue that Noa needed. The blue that calmed him.

When I did find the blue I would buy several. For almost two years, Noa rarely wore anything but royal blue shirts. Everyone that knew him knew that it was his “signature” color. The blue shirts began to have name: Blue shirt 4, Blue shirt red, Blue shirt hood. 

Then one day it became a problem. A child with Autism will have regimens and processes that help calm them and focus them. Its important to support them with these but we didn’t want it to become a fixation, to the point where he would refuse all other clothing except for things with royal blue. We started to slowly remove the blue shirts from the rotation. First it became a battle but then little by little he began to accept different colors. Rewards would be in the form of wearing “Blue shirt gap” on Friday or the weekend. We taught him to take his shirt off, to put it in the dirty clothes and to wait for it to be washed.

As with everything with Noa it was a process but one that we slowly and steadily accomplished. His progress overall has been amazing. From being able to tolerate simple things like going into a grocery store to wearing a different colored shirt we have all borne the scars of skirmishes that produced these small victories. 

I used to take so much for granted before this little boy entered our lives. Now we revel in minor accomplishments that are so very big for us. And as usual, Noa continues to teach us to look at things differently, to change our perspective and to see him in his world….where I’m sure the sky is a perfectly brilliant, beautiful royal blue. 

The Food Critic

When you have a child with autism you have to be ready for lots of well meaning advice from everyone:
-Feed him a gluten free diet and he'll get better
-Try a low fat/high carb diet and he'll get better
-Restrict his meat intake and he'll get better
-Start him on a organic, soy free, wheat free, gluten free, non GMO, low taste diet and he'll get better
-Feed him air and ice and he'll get better

Don't get me wrong, we did a lot of research on diet for children on the spectrum and we have tried quite a few of those "special" diets.

But as most children do, Noa decided to be a VERY picky toddler.

Many children with autism have food aversions and eating issues. It can vary from not wanting to eat a certain type of food to full on dietary exclusions of foods based on color. One of my friends' kid will only eat things that are white. Another one has a phobia of bread.

Noa will not and has NEVER liked meat. As with everything with Noa, starting off I thought it was a bit "odd". A toddler that refuses ANYTHING with meat in it. If he even smelled meat in something he would refuse it. We are unable to go NEAR the meat counter at the supermarket because the smell bothers him so much. He will stop dead in his tracks rather than go near it.

He was a very small toddler. Well below where he was supposed to be on the growth charts. So of course, we stressed about it.
He ate so few things we weren't sure if he was getting enough nutrition to help him grow.
So of course, we spend HOURS and hours online looking up substitutions and supplements.
Our pantry started to look like the aisle at the health food store.
We had chia seeds, flax seeds, almond meal, coconut flour, psyllium husks, spirulina, arginine, pea protein powder, brown rice protein, quinoa, lentils, etc.
Sounds weird huh? Even weirder? Noa loved it ALL. I had to learn new and random recipes to make with these things.
We stared making kale smoothies with all kinds of fruit in it. We would make so many that we would go through bunches of kale in days. They ladies at the grocery store would ask us "what are you doing with all this kale??" We eventually ditched buying kale and started a garden, growing our own.

Noa survives on pretty much anything green, grains and fruit.
He still has his interesting restrictions. He doesn't like anything white. His pasta is usually made out of chickpeas or lentils or whole wheat. Rice has to be black, red or brown.

Sounds like a parents dream right??
Yeah, not so much.

Have you even tried to run errands with a vegan toddler during the day? Where exactly do you go to grab a quick meal while you're out? Or what about driving across country? We will bring food with us in coolers because its pretty hard to find cucumbers, carrots and a kale salad 100 miles outside of town. The looks are hilarious when we go to restaurants and order:

"I'll have the pork loin and my husband wants the roasted chicken"
"And for your son? Chicken nuggets? Pizza? Spaghetti?"
"No, he wants the roasted pumpkin and kale salad with balsamic vinaigrette"
We have had plenty of shocked looks as diners walked by watching a 3 year old eat bowls of roasted veggies.
I've even had one grandma stop to ask "How did you get him to do that???"

Definitely more things I could complain about but this isn't one of them.
Its pretty awesome having a vegetarian kid
And look at the bright side, I know that I don't have to worry about anyone taking his lunch at school..unless they like kale and broccoli soup with seaweed crackers ;)

Where is There?

My last job was a great job. For some of us in medicine, finding a GREAT job can be a hard feat. I thought I had it all....great colleagues, great hospital, great house, perfect small town life.
We made the tough decision to give it all up after Noa got his diagnosis.
Everyone was truly understanding. It was hard, to give up all of my comforts to make sure that Noa would have access to all of the therapy and special programs that he would need. But you know as a parent  you sometimes have to make tough choices to make sure that your child gets everything that they need. I find myself lucky that I even had that choice.

So we sold our beautiful house and I left my great job and we moved thousands of miles away to another foreign country. From a small town to the big city. Initially I told myself it was just temporary. That Noa would "get better" and we'd be able to go back to my small town job where I was comfortable and happy.

Years have now gone by. I have seen the amazing amount of progress Noa has made with speech and behavioral therapy. We have accomplished things that we didn't think would be possible. And now I am at the end of my self imposed two year deadline to return to the life we left.

I came back to cover a couple of shifts at my old hospital. Its been great seeing all of the familiar faces and smiles. So good to hear everyone expressing desires for me to come back. I found myself having the same conversations with different people:

"When are you coming back?? Are you guys coming back??"
"I'd love to!  I do miss you guys but Noa isn't quite 'There' yet. He needs more time and services."

After having the similar conversation over and over again I found myself thinking, 'Where is There'?
Where exactly am I trying to get my son to? I realized that I continue to hold on to this imaginary goal, expecting that one day things would suddenly "go normal" and we could go back to a "normal" life.
Once again, I was trying to insert Noa into this pretend "normal" box. I was ignoring his gifts, his quirks and the way he processes the world in his way.
Sometimes as a parent with a child who is different you subconsciously wish and yearn for the normal, to want to go back to simpler times when he was a baby. Before the odd behaviors and tantrums and therapists, meetings and special schools. Its not being a bad parent, its being a normal human being. To want the so called "regular life". And that is OK. I forgive myself for remembering good times with my old job, old friends and my old life.
Its OK to hold onto good memories from the past.

I won't keep trying to seek this perfect goal for my son any longer. I will do my best to accept the imperfectly perfect beautiful boy I have been graced with.

So when the next friend asks me when we are coming back, I won't say 'Noa isn't There yet'
I'll say that 'Noa is amazing, he has come so far and he is doing so well'.

I know that his father and I will continue to make sure that he has the tools to flourish and grow into the perfect little person that he was meant to be.

I will remember that our standard of normal is meant to be challenged and changed.

I will finish my work here at my old hospital in a couple of days, and when I do it will be time to go. This chapter of our lives has been finished and I will always look back on it fondly. I have no idea where we will end up in the future of even if we will ever return here but I know that where ever we land, Noa will be fine...and that my new life is the 'new normal'...for us.

The Playground

I hate the playground.  My 5 year old loves it.  Reluctantly, we head in that direction. He chats the entire way. That means he’s excited. He will tell me nonsensical stories. Sometimes I don’t understand what he says, so I have to gently probe without frustrating him. Sometimes he repeats the same phrases 20 times. It’s like listening to a record player skip. His little brain gets “stuck” on words and will repeat them because he’s not sure how to fill in the blanks otherwise. Sometimes the repetition calms him. Sometimes it’s associated with agitation. We have become adept at differentiating all the different moods of Noa. Our son is autistic.

At the playground, there are no children. He seems a tad disappointed. He looks up at me and says, “It’s empty”. Then he drops my hand and bolts off to the nearest monkey bar. I happy that he’s excited to be here but guilt creeps in - I knew it would be empty. Its 9am, not many families out this early. I did it on purpose. The playground is where I have to sit and confront this organized mess of our lives. I have to worry about the future, about what will happen to Noa, will he have friends, will he ever hold a meaningful conversation?

I’m snapped out of my worried gaze by his voice. His echolalia is bad now. He’s excited. He’s repeating the same nonsense phrase over and over as he climbs along the bars: “There is nothing that is going to hurt you. Lobsters won’t bite you. Seals live in the ocean”

Every so often I will repeat and agree. Reassure him that nothing will ever hurt him. Lobsters won’t bite him and that seals indeed live in the ocean.
I also try to re-program him. Try to get him to say something other than those phrases. Sometimes it works, sometimes it doesn’t.
I hear laughter in the background. Children are coming. I immediately get tense. This will never get easier. I pray for the kids to be kind. I hope they are girls aged 4-5. Boys have a tendency to be less patient with a “different” kid like Noa.
A big group of 7-year olds boys burst onto the playground.
Noa is smiling, now shouting about lobsters and seals.
The children are loud. Noa watches them, smiling. Every so often, he looks at me. I smile back at him, trying to send encouragement. His brow starts to furrow. I know he’s remembering what he’s supposed to do. Unlike “normal” kids, we have to teach Noa social cues, that you say “hello” to people, shake their hands, say “goodbye”, ask if they want to play. Things that naturally occur with kids all over the world are practiced in our household daily.
I move a little closer to Noa, hoping my proximity will encourage speech. The little boys have now created a game and one of the boys sees Noa and runs up to him.
I tense immediately.
The boy says “We are going to the fort to protect it from the dragons! Do you want to help build the fort??”
Noa smiles at him but doesn’t say a word.
The boy repeats, “Come on, we’re building a fort! Do you want to help??”
 Noa continues to smile, but still stays silent.
 The boy looks at Noa, tilts his head, then shrugs and runs off to join his friends.
The smile on Noa’s face disappears. My heart aches but I continue to smile.
 He says “I was supposed to say ‘Hello, My name is Noa.’”
 “Yes babe, you were supposed to say ‘hello’. That’s ok, we can practice again.”
 His brow is furrowed in deep thought again and then it’s gone. His smile returns. He runs off to another part of the playground.
I continue smiling but my heart is broken.

Shortly after, a 4 year old boy wanders over, he smiles at Noa and Noa smiles back. They start running, playing an unwritten game of chasey. Eventually it is time to go,
the little boy comes over and tells his mom he had fun. We say our niceties to part ways.
I take Noa’s hand.
He looks at up and says “I had fun at the playground!”
I smile down on him “Did you play with a friend?”
“Yes!”
Then I see his face darken a bit and his brow furrows again.
“I was supposed to say ‘Hello, my name is Noa’
“Yes, you were supposed to say ‘Hello’. That’s ok, you did really well. We will practice again.”
I don’t know if he heard me. He’s back repeating his random statements:
“There’s nothing that is going to hurt you. Lobsters won’t bite you. Seals live in the ocean.”
We walk back towards the house.
I’m not ready to do this another day.
We walk slowly. I begin repeating:
“There is nothing that is going to hurt you. Lobsters won’t bite you. Seals DO live in the ocean. We are going to be ok.”

Controlled Chaos

Controlled Chaos

That sums up the perfect mess that my life has become.
I'm a doctor, a wife and a mommy to an amazing 5 year old boy who has changed me in ways I will never fully appreciate.
He has made my life harder but has given me so much more in return.
My little one is autistic

Being a mom they tell you about those "gut" feelings about your kids.
I first got that "gut" feeling when Noa was almost 2. Something seemed a bit off. It was the way he super fixated on certain things, his ease for memorizing shapes and numbers. Something about it seemed different.

The confirmation of that fact hit me like 1,000 bricks.
There is nothing that can prepare you for hearing that you child has a disability.
All of your dreams, hopes and aspirations are all plunged into uncertainty in an instant.
Will he go to college? Will he have friends? Will he be able to live independently? The first several months after his diagnosis were a haze. My husband and I were like two ghosts around the house, barely speaking as if words would disrupt the others deep thoughts and musings.

After the initial shock we went into to full Doctor mode. We purchased all the books, podcasts, Ted Talks and magazines you could find about raising a child on the spectrum. We immersed ourselves in reading and researching about diets, therapies and schools for Noa.
We looked up places for speech therapy, occupational therapy, behavioral therapy, and every type of therapy you can imagine.

After all the books, reading and time we realized that there will never be 1 place to find information about raising our unique son. He needed us to enter his world and to find a way to bridge him to ours. Instead of worrying about how to "fix" him we needed to figure out how to introduce him to the world. How to navigate it since talking was so difficult. How to interact with people who are "normal". We also learned that his autism is not really a disability but an ability.
Noa has taught me patience that goes beyond anything I have ever been able to master in my 40+ years on this earth. He is my Mr. Miyagi, My Obi Wan Kenobi, my Morpheus.
He has given me strength and turned me into a supermom even though I don't think I deserve the title.

My world has changed. It will never be the same with a child like Noa.
I have had to abandon the former Type A part of me and embrace the new, autism mommy me.
Most of my day are spent working and worrying but this kid has given me a renewed energy and reason to fight.

So I will continue to battle on with my little son shine. There will be wonderful things to celebrate and there will be many nights I sit and cry on his bed. I have a good group behind me, all committed to seeing Noa thrive and grow and that's all I need in my controlled chaos of a life right now.