Race to the Finish

It was a race. A race to the finish. It took a while to explain to Noa that he needed to run to the finish line. To cross the line. To run with the other children.
Noa loves to run. He's actually quite fast.
With his tall, slender body we figured he would be a good runner. Or at least we hoped. We were looking for a healthy outlet for his seemingly neverending energy.

We enrolled in a local track club hoping that Noa would fall in love with Track and Field like his father and I had.

Noa enjoyed running but the crowds and all the parent around made him shy and confused. He didn't see the start line or the finish line. The coach was kind and patient and kept trying to talk with him. Eventually, we figured that it would be better if hubby or I ran with Noa, to keep him focused and help him see the finish line.

To be on the field with the children, we had to don special safety jackets, normally reserved for coaches or race staff. But this was also the jacket given to parent with children with special needs. To let people know that we belonged there. With Noa.

The first race was terrible. Noa ran, but he ran like he wasn't sure, not at all like the confident kid I'd seen streak across the same field days before. He was confused. There was music playing in the distance, the clank of bells for the race across the field, dogs barking. It was too much. He couldn't stay in his lane, he wouldn't finish. 

When we finally got him off the field we took a break, we were all stressed, mostly because this looked like something we were NOT going to be able to do. It took one year of one on one swim lessons to get Noa to learn basics. It took an amazing swim teacher with the patience of a saint. It was daunting and honestly, overwhelming to have to start from the very beginning with something that seemed so simple. 

JUST RUN. That's all. See the start? Start here. See the end? Run to there! Simple, right?

As with anything with a child with ASD what we see and hear may not be so very black and white to them. There was no 'why' to this task. Why should I run from this white line to the other white line? There is no reason. This is what I saw in Noa's face. There was no good reason. We WANTED him to run, but he saw no purpose in the exercise.

So like anything, we had to fall back and determine if this was "right" for him. What is the purpose? Are we here cause we are still trying to maintain the dream of "normalcy"? So we can say that our child plays football/baseball/basketball, etc? Are we continuing to press upon him our dreams and goals?

We left that day, with little pieces of paper giving us Noa's finishing times....dead last in everything. 

The next week, on Friday night, Noa asked "Are we going to track on Saturday?"

I was shocked as I assumed that he didn't care for it.

"Why, do you want to run tomorrow?"

He tilted his head, looked down at drawings and said, "Yes. I have track."

So with that decision made, we were off to track again the next morning.

I donned my bright yellow security jacket along with my hubby. We decided who would run along side Noa and who would be at the finish line to guide him.

We were put in lane 8, the outside lane which would allow me to run along side him.

I watched as the coach went to explain to Noa to run TO his daddy waving at him at the finish line. 

Noa responded with a random question and coach patiently answered and told him again what to do.

On Your Marks! 

(Noa wasn't)

Get Set! 

(Noa wasn't)

GO!

The gun went off and Noa started more than a second after. 

I started running along with him.

"Come On Noa! Lets run to daddy!"

He ran, seeing his dad yelling at the finish line. 

His little legs became a bit faster.

All the other children started crossing the finish line.

We were still running, fast but not fast enough.

Noa was fixated, ran and crossed the finish line.

The children cheered for him.

The race staff applauded. 

Noa was happy. 

He was liking this attention. 

I was winded....(Didn't realize how out of shape I was!)

Noa proudly took his little paper, showing his time and his position (last). But he held onto that paper.

It was his.

He raced and he made it. He enjoyed it.

The day ended and we packed up to go home.

Noa still held on to his slip of paper, announcing his last-ness.

But to him, it was a paper that showed he won.

He finished.

We all made it over another hurdle.

Last place but another first. 

I'm Not Your Superwoman

I’m an 80’s baby (ok FINE, a 70’s baby). Point is, I’m old and have an appreciation for “old” music. One of my favorites to sing in the shower was a ballad by Karyn White, called ‘Superwoman’. I would belt out the lyrics, never understanding what they meant but I loved the “I’m Not Your Superwoman” chorus. Fast forward almost 25 years later and I find myself thinking about those lyrics. Not because the song was catchy (it was) but because I realized that trying to be that “superwoman” is impossible, unreachable and a very dangerous thing to aspire to. 

We have the unfortunate position as moms (and dads!) to think that we should be EVERYTHING at once. A great mom, a great wife, a great employee, a great friend, a great community leader….Well, hate to bust your bubble folks...It ain't possible. The one “good” thing that happened out of our COVID lockdown was the ability to retire the idealistic cape of Superwoman and being able to retire into the world of “this is all I can do for now”. 

We find ourselves in a distressing and complicated world right now. Watching the hate and pandemic spread across our home has been difficult to say the least. I’ve had so many sleepless nights, anxiety and survivors guilt galore.

It’s been hard on so many, the home schooling, the uncertainty of tomorrow and the fear. Throughout it all, we have had to adapt to our new “COVID normal”.

I would leave early in the morning like normal, this time wearing scrubs, a mask and hat. Don and doff my PPE all day long and then come home to decontaminate in the garage and take a shower before touching anything or anyone. 

My poor husband was left in the wilds of home with a little one with ASD and ADHD trying to “home school”. 

We continued slogging along for the last seven months. During that time we re-discovered how chill life could be when you don’t have things to do or places to go. For seven months there were no birthday parties, cookouts, swim or track practice. No movies, no date nights, no dinners. All the outside noise was gone, leaving just us behind. Long walks or family bicycle rides replaced the usual Saturday errands. Everything was stripped back down to the basic essence. It was actually quite nice. 

I started writing again (not here but a book!) and hubby and I made plans for the next step in life. 

Soon our COVID normal was shattered by the resumption of the “regular” normal. Our numbers went down, schools opened back up and things started to go back to a slightly slower pace. Coming out of lockdown was like waking up from a long hibernation. We are now edging back to the somewhat hectic pace of afterschool activities, rushing for pick up and grocery store runs. Days aren’t consumed by PPE wash downs and COVID scares. 

So now I find myself having to decide on who I am going to be again. I’ve had the opportunity to sit in the comfort of knowing that there is NOTHING to do and I loved it. I had limits on what I could offer which allowed me to go back to things that made ME happy without apology or interruption. I’ve read books, listened to music and I've done NOTHING but watch Noa blow bubbles for hours. Know what I decided???? IT’S GREAT!!! So after 7 months of intermittent lockdowns and still living through unprecedented times, I’ve decided to strip off the mask and stop being ALL.

I’m not going to be a great everything. Sometimes I forget things, sometimes I will say “no” to things (full stop, no explanation needed). Sometimes I will need a nap or self care or family down time. It all ain’t gonna get done. Our COVID numbers are thankfully low, I get to go back to less PPE and put on real “clothes” to go to work now. However, when I go into my closet, that silly Superwoman cape will sit right there where I left it. I’m not your superwoman. I’m not pretending to be. I’m flawed and I don’t care that the world sees it...Please snatch the pedestal away cause I’m not standing on it. If you’ve learned anything about me please remember...I DON’T have it all figured out, I WILL NOT pretend to have my *ish together and I’m going about life and learning as I go. Be kind to yourself and do me a favor….BURN your cape. Like the great Anita Baker sang…”I’m Giving You the Best That I Got”. No more, no less. 

(Sang it, Karyn!)

SUPERWOMAN

What We NOT Gonna Do

I was going to start out apologizing for not writing these past several months but you know what? I’m giving myself a pass. A moment of grace. I can’t do it all. I DON’T do it all. I’m not a supermom, superwoman or anything of the sort. I don’t have all my stuff together and you know what? That is OK. I forgive myself for my shortcomings. I forgive myself for not being able to fully juggle a full time work schedule, being a wife and the OVERTIME work of being a mom of an amazing boy with additional needs.

For any moms/dads or carers out there that need to hear this…give yourself a moment of grace. Realize and recognize that it is OK to feel lost, broken, exhausted and overwhelmed. You’re a human, not a robot.

I took a break from being on social media and writing because I was realizing that sometimes those platforms create these ridiculous and fabricated “lives” that make others pine away for perceived perfection.

I got lots of nice comments on my blogs and posts and then I realized that I had become one of those people. The one that portrayed an air of perfection when nothing was further from the truth.

So I stopped posting and took a moment to look at what I am trying to achieve.

I write and expose my life because I don’t want anyone out there to feel alone or like a failure cause you know what, I fail too…DAILY.

I’ll wake up with the best intentions to “Do better” and end up going to sleep with the same unachieved plan.

I have tried whiteboards, calendars, planners and lists and each one is a testament to my inability to get my Sh*t together.

My good girlfriends decided recently that instead of doing a “Vision Board” or focusing on a “To Do” List we are going to be honest and raw and support each other in our “Things we Don’t Do” list.

What better way to show each other support and solidarity than in vocalizing and uncovering our failures??

So you know what?

I don’t make my bed in the morning. I think it’s a waste of time. No one is going to see it and it makes it more accessible for when I need to collapse into it…

I don’t moisturize my hands like I should. More than fifteen years of hospital sanitizer and scrubbing for surgery my hands are rougher than sandpaper but my husband is used to the pain I inflict by touching him.

I don’t cook anymore. It used to bring me joy and now having to figure out the time to shop, meal plan and cook makes me anxious, so you know what? Meal plan delivery service it is! (Thanks Soulara!)

I don’t take care of my mental health as well as I should. I’m working on it but it is definitely a work in progress…

I don’t separate my laundry past “dark” and “non dark” clothes. I purposely don’t have white stuff so I don’t have to deal with the drama of laundry segregation more than that…

I don’t write as much as I want to or should. I let the fear of being “real” pollute my creativity. I am regularly paralysed by the fear of “what if ‘they’ don’t like it”. I’ve realized now that I’m writing to heal and to help and if I do both in the process than that is a big ol fat win.                        



So you know what, let 2020 be the year of ‘What you Ain’t Gonna Do’. Be happy with what you won’t have time for. Embrace and accept what you won’t get around to. Be real, be authentic and most importantly, give yourself a break. You deserve it. 

One Hour

This morning wasn’t any different than any other morning.


My alarm went off. I got up, hurriedly getting myself ready, careful not to make too much noise so I don’t wake him.


Last night was bad, again. He was up at 2am, wanting something to eat.

So we got up, fed him and got him back to sleep by 330am.
As I crashed into my bed, I did a quick calculation. I can get 2.5 hours of sleep now. That will have to do. I’ll be exhausted, like I’ve been but it’s better than nothing.


I go in to wake him up.

This morning isn’t any different than any other morning. He fights, he kicks and swings at me. I’m used to it. I block his swings and continue to talk to him, to try to soothe him, to bring him down.

He’s calmer. He finally gets out of the bed. He empties most of the toothpaste in the sink. That’s the second tube he’s gone through in a week. I get some out of the sink and brush his teeth.

He starts to run off. I have to chase him around the room to wash his face.

He’s rolling on the floor. I try to get his clothes off and get his school clothes on. He’s kicking at me again. I side step, used to having this dance. My shin is bruised from the last kick from last week.

School clothes on. He’s still protesting. Now loud. I’m sure the neighbours can hear.

I try to get him to eat. He never eats in the morning. I get him to take some swigs of a smoothie. 3 is enough.

He is now calmer. No more kicks and swings.

He starts to repeat the same statements over and over again.

I get him into the car. The car calms him more.

We drive to school.

He runs off to play as soon as we get there. He is happy and calm.

I’m exhausted but pretend to be good.

I chat with the other parents. The bell rings, its time.

I give him a kiss. He is relaxed now. The routine is set.

I come home. There are toys all over the floor, the kitchen table is a mess and there is laundry that needs to be folded and dishes that need to be put away.

I’m giving myself a moment of grace.

A moment to say no.

A moment not to care. To focus and not worry.

I’m giving myself the gift of One Hour.


For all my parents out there, especially those of us juggling the never ending battle of what HAS to be done and what NEEDS to be done…


For those who have a child that has special needs or just NEEDS their energy and time…


For those who can’t seem to pack everything that needs to be done into one day…


Please, listen

Take that time to breathe, to focus, to worry less about what NEEDS to be done and more on what you WON’T be doing.


Give yourself a break


Give yourself the chance to pause


Give yourself the gift of ONE HOUR.


You deserve it.


Merry Christmas

School Daze

Legend has it, when I started school, I marched right in, turned around and told my mom "I'm fine, I'll see you later"
This story changes in detail depending on when and what time of day you ask my mom. 😏
The bottom line is that I was her super independent, fearless child.

Fortunately, or unfortunately I have passed that gene onto my son.

We started a mainstream school recently. It was an agonizing decision to get to this point. There were several people that thought he should just go to a specialist school for children with autism. Others on his care team thought that he would flourish in a mainstream setting with neurotypical children and learn to mimic and mirror their normal social behaviours.
After going back and forth, we opted for mainstream school.

The road to school was a rocky, emotional and sometimes crappy one.
We had to get assessments, apply for school disability funding, meet with teachers, principals, aides, therapists, the Pope, etc. Then there were more things to do like develop his Individual Learning Plan (IEP) and work on a transition program.

When all said and done I felt like we were about to launch him into space not Kindergarden.

Don't get me wrong, I appreciate all of the preparation, the meetings and the care and consideration put forth by EVERYONE dealing with Noa. But like all things in our life, it was overwhelming.

All we did for the past several months is agonize over EVERYTHING and anything with school.
Would he have an aide available for his am break? Who would watch him during lunch? Would he need someone in the classroom to help him understand instructions?
Everything was a question and answers were mostly in the form of guesstimations and theories.

I barely slept the night before his first day of school. I took a half day at work so I could be there.
I had a cute little sign made with all the normal stats "My First Day of School" listing his height, hobbies and teachers name. That morning he was as calm as ever, asking over and over again about "Big School". I reassured him that we were going to Big School today and that he would be a big boy now. My final statement fell on his deaf ears as he was busy picking out a perfectly round rice cake from the bag.

I took the obligatory pics and we piled into the car to drive to school.

We parked a couple of blocks away so that we could allow Noa some time to acclimate and we could prepare him for his day. Preparing Noa is telling him what is going to happen. Noa is not particularly rigid in his schedule but he does need a general idea about what is going to happen unless you want him to fall apart. So we walked towards school and  I reminded him that we were going to go to Big School. That his teacher, Miss L would see him. That his friend, E would be there and that he would see one of his therapists from Little School. He walked along, repeating the plan, turning it over in his little mind.

We all gathered at his classroom, a sea of new little faces. Some excited by the new adventure and others clinging to legs, crying. Thankfully, Noa was pretty serene. Just looking around calmly.
I made anxious and obligatory chatter with some of the new parents. We traded laughs about how this was a long time coming.

The bell rang and Miss L, Noa's therapist and the teachers aide came to gather the little ones up and take them to class. We were invited to come in as it was the first day. I could feel my chest tightening and my tears coming. I was blinking furiously, trying to keep it together. Thankfully, there were other mom's already half way to a Stage 4 meltdown. I wasn't alone.

We took Noa in, got him seated to his friend and then the second bell rang. That was our cue, that was it.
Noa was engrossed in a puzzle that was set out on the table.
I bent down to tell him bye.
He was busy in the puzzle.
"Noa, Mommy and Daddy are leaving now. You are going to have a good day at Big School"
He didn't look up, grabbing another piece
"I stay at Big School"
It was a statement, not a question. When Noa questions it could mean he's uneasy or upset. This was just a statement. An understanding. A resolution.
He was comfortable.
He was fine.
"I'll see you later Noa. I love you"
"See you later" I winced cause I didn't get the obligatory "I love you" back as all the other children were doing.
He didn't look up.
There was no anxiety.
As far as he was concerned we were gone.

We waved at Miss L and the therapist and I barely made it to the door when the tears started flowing. One of the other moms and I  had a brief squeeze of hands in solidarity as we darted away from the classroom.

All that preparation, all that work to get him to this point.
He doesn't need me right now. He's independent.
He got that same gene that made me comfortable with dismissing my mom on my first day of school over 40 years ago.
I guess we are doing something right.

Gone Girl

Sometimes I think it was easier when he didn't notice me.
Noa was affectionate-ish
He would cuddle and hug...only when he wanted to.
He'd sometimes go rigid if someone touched him but was happy to allow us to carry him around.
I didn't realize it initially but he didn't really notice when I wasn't around.
I'd hear my friends talk about their babies having separation anxiety.
The guilt they would feel when they left a screaming baby at the door.
I would leave and Noa would barely notice.
He'd see me leave but it was like he realized that it was a temporary separation. That I would be back. There was no reason to get upset.
And so I'd say goodbye before going to do a shift at work and Noa would glance up from his play and that would be it.
No tears.
No running for me at the door.
No sneaking out.
I just left.

I didn't realize it would be an issue until the first time I actually "left"
I decided to go to a medical conference in San Francisco while we were living in New Zealand.
Part of me was excited, this would be my first chance at "mommy time" since I had Noa.
The other half of me was guilty. I was guilty about leaving my baby, going overseas and being so far away.
The day I left, I was a ball of nerves. I cried when saying goodbye to my husband and begged our nanny to love Noa while I was gone.
I cried on the plane, I was so worried about how Noa would do with me not there.
My first day way, I called home to check in. I just KNEW that Noa would be stressed without me.
"He's fine". My husband was looking less than amused by my 0300am phone call.
"What do you mean 'he's fine?'
"Babe, he's fine. Just that."
"Has he asked about me? Did he cry this evening about not seeing me?"
"Nope. Call back tomorrow, I'll let you skype him"

Each day I called, and each day I got the same message.
He was fine.
He wasn't missing me.
Life went on.

Finally on day 7 I had enough of my "Mommy Medical time". I wanted to come home. I called my travel agent and asked him to get me on the first thing smoking back to New Zealand and my family.
The best he was able to do was to get me a flight out in 48 hours.
I packed my stuff and waited for the 48 hours to go by.

I was thrilled to land back "home" in New Zealand.
My husband picked me up and I couldn't wait to see Noa.
When I got home, he was in his usual position, on the floor, putting letters and numbers in order.
"Hi Noa"
He looked up at me. Blinked. Stared. Then he screamed. He wailed and cried and sobbed.
I grabbed him and held him, cuddled him and kissed him, my shirt soaking wet now with his tears.
He sobbed for what seemed to be forever.
I took him in his room and held and rocked him for ages.
He finally stopped, then he looked at me and climbed out of my lap and toddled off back to the living room to play.
It was like the meltdown never happened.

I was confused. I had no idea what just happened.

And it happened again, this time I had gone for 2 days when my sister came to visit. When I came home, Noa reacted the same way. Sobbing, screaming, inconsolable for almost an hour.
And again, just like that, the transgression of leaving him was forgotten.

Going to work was fine. Being on call for 24 hours was a non issue.
There was no crying. No notice of my leaving.
It was that way for years.

And then we moved to Australia.
Noa started his Early Intervention program and speech therapy.
His world opened and we started understanding.
There were new words now, toddler negotiations and "normal" meltdowns.
He started to notice.

"Mommy go to work?"
Little brown eyes were watching me intently as I got ready and packed my overnight bag.
"Yes, Mommy has to go to work. But I will be back"
"Mommy be with you tonight?"
This is when it started to hurt. Most nights I'd be home but sometimes, I wouldn't come home. It could be days before I'd see him again.
"No, Mommy won't be here with you tonight. But I will see you tomorrow. Mommy has to go help the babies"
His brown eyes started welling up with tears. Baby voice cracking.
"Mommy stay here with Noa? Don't help the babies." His tears were falling now. My heart is now breaking into a million, trillion pieces.

And this is the moment where I realize I hate everything. I hate my job, I hate myself for leaving him. I hate that I have to do silly things like pay bills and  a mortgage.

I blink rapidly to prevent my own tears from spilling.

"Mommy will be back. SOON. I promise. When Mommy comes home I will play with you."
He considers this for a moment, still looking forlorn but the tears have stopped.

"Mommy go to help the babies then come home?"
"Yes, Mommy will be back to play with Noa SOON".
The acceptance of the inevitable sinks in a bit.
I gather my bags and we all walk to the car.
He holds his Daddy's hand and I give them both a kiss, reassuring him that I will be back soon.
I see him look up at his father and say "Mommy is gone?" I don't hear his father's reply and I'm glad I don't have to. I don't want to cry in front of him.
I wave and drive off.
I'm ruining my makeup with pent up tears coming down my face but I'm also so happy...
He noticed I'm gone.

It's so good to be noticed. 😊

No Pain, No Gain

"OMG, have you seen that show, 'The Good Doctor'? Its about a boy who is autistic that is a super genius doctor!!! Its so good!"

I smile and say I haven't caught the show yet but I'll make a point to watch it.

Truth is, I won't.

I know my friend is trying to be helpful. She's trying to show me that she has seen programs with actors portraying autistic characters and they are living "fine".
However, that makes me stress more.
I've seen and watched several shows that feature characters that are on the Spectrum:  The Big Bang Theory, Mr. Robot, The Accountant, Mile 22 and the Good Doctor all feature actors portraying a person on the Spectrum.
Some can be fun but others can just make me more anxious thinking about Noa's future.
Sure, its great to imagine him as a super smart doctor able to MacGyver a breathing tube out of a straw but I'm looking past the "job" and more into the person.
Most of the shows featuring people on the Spectrum just amplify my biggest concern for Noa....Will he have friends and meaningful relationships?
How will he connect if he can't quite understand basic emotions/desires and feelings?

Last year, in his intervention program, they spent months teaching him how to interpret facial expressions. As with all things, Noa fixated on these. He would walk around interpreting people's faces as we walked down the street. Hard to explain to the random woman why my son calls her "Angry Face". (Spoiler alert, his comment MADE her the Angry Face Lady even though she wasn't before.)
After a while, he was able to suppress the urge to call out interpretations of facial expressions but he still had issues with figuring out minor emotions. I know this will be a challenge for him when it comes to forming friendships and relationships.

I won't be here forever, facilitating things, hovering and helping him figure these things out. We fight every single day to give him the tools to try to figure this out on his own.

I truly hope that one day he will have friends that "get it' when Noa doesn't do a lot of back and forth banter and will not get too upset when he bluntly tells them when they look fat in stripes. (Thanks for that Noa, I threw those pants away.)

I wonder if its better this way? To not be "attached" to all of these complex and sometimes difficult emotions. The anxiety, the worry, the insecurities and stresses? Will I get this job? Did they like me? Will I fit in? Will he/she say yes? What if it is better, to be free of all of that? I know that he is capable of feeling happiness and joy because he loves certain activities. They make him smile and laugh. But personal interactions are very flat and one dimensional.
Is it bad that he doesn't seem to feel "bad"?
What if this can spare him from heartbreak when a girl rejects his Valentine's card?
Or if he doesn't make the school soccer team? Or if a group of friends don't invite him out?
It makes me feel a bit better that instead of questioning his worth or being down that it will not even register.
He takes it as face value. People come and they go. People get sick, they die. People say no and will reject you. And you move on.
There is no reason to mourn, to cry or to "freak out".
Life will go on.

On the flip side of all of this I wonder how missing out on those complex emotions will stunt his emotional growth? Will he forever be childlike because he doesn't form friendships or relationships? I don't want him to be alone, I desperately want him to find an enduring and beautiful love like I did with his father. I have seen it happen with adults on the spectrum but I'm not sure what qualities are there to make the spark happen but I know its there.

There is a lot to learn from Noa and his interpretation of the world. Maybe I need to let go more, to stop stressing so much about "people" things. Stop worrying about what people think, or how they receive me. Just focus on being me and a good person. Maybe Noa has found the true path and we are just stumbling around trying to find the way.

Noa's amazing "ability" to deal was beautifully shown last month.
My beautiful mother was here visiting us for 6 months. During that time, she became a regular part of his life. Everyday, he would wake up and go spend time with her. She would read to him, play with him and interact with him. Eventually, the time came for her to go back home. As each day grew closer for her to leave, I became more and more stressed and depressed. We waffled back and forth with how we should "sneak" her out. We thought about me taking her alone, my husband taking her or us going as a family. We decided to go to the airport as a family to see her off. I honestly did not know how Noa would react to seeing her leave after 6 months. We were ready for a complete meltdown.
We sat with her as long as we could but then it was time to say goodbye. I was in tears, my husband was trying to remain stoic (he cried a little too :) and we hugged and said goodbye. Noa looked at her, gave her a kiss on the cheek and said "See you next time" , waved and then turned around to leave.
No stress, no tears, no pain. Just "bye".
I was confused and through my tears, laughed at the hilarity of it. Here we are, the three adults fretting over saying goodbye and Noa did it in 5 seconds and had moved on with his day.

I'm standing in the airport, watching my mom leave, wiping tears away and laughing at the same time.
Noa looks up at me and says, "Mommy is sad?"
"Yes, Noa. Mommy is sad because Gigi left"
He looked down and then said, "Gigi will come back"
I nodded. "Yes, Gigi will come back"
He took my hand and said, "Lets go to the Aquarium"
And just like that, the sadness dispersed a bit. I wasn't going to wallow. I needed to let go, process it and move on. Its not a mourning, it was a "see you later". Noa knew that. I had to figure it out on my own.
It was time to go. We all held hands and walked out of the airport. Tears had dried on my face. Noa was chattering about his favourite fish he would soon see. It was a beautiful sunny day. Noa was fine, I was fine and that was that.

A Very Merry UnBirthday

We had a birthday recently. Not just any birthday. It was Noa's FIRST birthday.

Well yes, he turned six but it was his first time celebrating with a birthday party.

Before this year, birthdays and holidays all went unnoticed. 

He never cared or understood things like Christmas, Birthday celebrations or  parties.

They were fun, but he didn't "get" why we were celebrating.

We did all the usual things: cook large Thanksgiving dinners, put up the beautiful tree for Christmas but we never really bothered with birthdays because he didn't care.

We did try. His third birthday, right after his diagnosis we tried to have a small family birthday party. I got him a hat, and we had a friend make a cake and we sang....

When we did, Noa started shrieking and crying. He couldn't stand the noise.

The celebration turned into me rocking him in his room until he calmed down. 

After that, we would go to his friends' birthday parties but I would have to take Noa out of the room when it was time to sing Happy Birthday. Something about the singing triggered him to melt down.

Then, as all things do with Noa, something changed.

We were at one of the umpteenth birthday parties for one his classmates. All of a sudden, Noa comes up to me and asks, "Noa has a birthday too?"

I was caught off guard. Not only was he asking about his birthday for the first time EVER, he was doing it in context! He was watching one of his friends, eyeing the decorations and cake and decided that he wanted the same!

I almost cried right there.

This would be the best birthday EVER!!!

I immediately went into planning mode. My husband and I went around to every kiddie zone, birthday party/germ factory around to find the perfect place for him and his friends.

We knew that having a place that was friendly to children on the Spectrum was a must...it had to have good "sight lines" so we could keep an eye on our little ones while they played...

It had to not be too loud, preferably not have too bright of lights and not be crazy expensive. 

We booked it early on a Sunday morning as it was less likely to have lots of other children there.

You would have thought we were auditioning spots for a $50K Platinum Wedding!

After we selected the location, I had to find the cake. Easy right? Have you ever tried to find a bakery that can make a cake that is egg free, dairy free, nut free and gluten free? Well thankfully we live in a pretty big city and I was able to find just the place. Then I had to choose the design. I flipped through the books looking at characters that I didn't recognize. Who is PJ whatever? The Wiggles? Huh? Noa doesn't watch TV, he's never seen a movie and doesn't really have a favourite character so I didn't know what to do.

I just decided to go with some plain, handwritten "Happy Birthday" and cupcakes for the kids.  

So after I ordered the cupcakes that were taste free (oops, I meant "healthy") , I ordered a shirt that said "Birthday Boy" and got all the decorations in his favourite colors of royal blue and green. 

Everything was all set. 

Every day, we talked to Noa about his birthday party. 

Noa has to be prepared for things. He needs to know in advance what will happen. So to help, we started going to the play center where his birthday party would be held. He got used to the facility, the lights, the sounds. He loved playing there.

He asked everyday, "Its Noa's birthday?". We would assure him it was coming soon.

The day of the party, I dressed him in his cute little shirt. I told him that all his friends would be there.

We got to the venue and he was comfortable, recognized everything and went off to play.

Within minutes his friends began to arrive, with gifts in hand. Noa would see them and then 

there would have an unspoken word between them and they'd go off to play, running and jumping around the play zone. 

The moment came for cutting the birthday cake and tasteless, albeit safe, cupcakes. 

This was the best moment. 

For the first time in his six years of life, Noa sat at a table and had all of his friends and school mates sing "Happy Birthday to You" .

I watched him carefully, my heart overflowing.

He flinched at the singing. His expression became more strained. He focused on a cupcake and furrowed his brow.

There was no smile, no eye contact, no acknowledgment of the singing and accolades.

At the end of the song, he immediately looked at me and said "Cupcake please".

I grinned and gave him a cupcake.

The kids grabbed their flavorless paperweights and happily gobbled them up then ran off to play.

It was a success. These little friends, these moms and dads made this day a memorable one for my Noa. 

After another hour it was time to go home. 

We packed up all the gifts, and said goodbye.

Noa was happy and relaxed.

I asked him, "Noa, did you enjoy your birthday?"

He looked out the window as we drove home, "I had fun at my birthday"

Tears were welling up in my eyes. We have come so far.

We got home, unloaded over 20 gifts from the car and took them into the house. Noa stepped over  the wrapped presents, not even realizing what they were.

He ignored them and grabbed the balloons from the party.

He bounced them up in the air, watching them float down from the ceiling, oblivious to the gifts around his feet.

He still doesn't quite "get it" but that's OK

He got enough today. I got more than enough today. 

He had a very Merry UnBirthday. 

The Green Eyed Monster

The Green Eyed Monster

I will be the first to admit. I am not perfect. I do believe one of my strongest traits is my ability to self reflect and acknowledge those short comings. I strive to do better and be better. But sometimes, in between those moments of reaching the pinnacle of “supposed” human perfection, I’m flawed and normal.

I have anxiety and doubts and sadness.

I even have been held captive by the Green Eyed Monster.

He’s the one that tells me to worry, he tells me about what could go wrong, he tells me how unlucky I am. He likes to creep around, jump into my thoughts.

He came with me a couple of weeks ago to Noa’s school orientation for Kindergarten.

The idea of “normal” school has been one of the most anxiety provoking, stressful times in my life.

We have been grappling with the idea of school for next year. Will he be able to go to a “normal” school with “normal” kids? Will he understand how to participate in class? Will he have friends?

Would it be better/easier to send him to an Autism School?

We have spent countless hours and days discussing this with his therapists, his paediatricians, family and friends. We have been lucky to find a public school that has a dynamic staff and inclusive program for little ones like Noa.

So here we are at a school that Noa is supposed to be at for the next 6 years.

It’s the information night for kids starting Kindergarten next year.

All the parents seem young, happy and excited. The kids were all told to bring a favourite stuffed animal for storytime. Noa doesn’t have one. We brought one but he didn’t understand he was supposed to carry it with him…

When we arrived, all the kids were placed into a large art room where they had various activities set up for them to do.

They were supposed to create a piece of art for story time. Noa went from table to table. Touching things, feeling items but unable to sit and “create” something for story time. He was excited, happy but in his own world. People would talk to him, a couple of the teachers would try to engage him but he would keep doing whatever was interesting him in that moment, not acknowledging their presence. I would explain to them that he’s autistic. Thankfully they all seemed unbothered about the challenge of a child like Noa in their class but my anxious brain worried that they would ask not to have him assigned to them.

It was time for the story. All the kids sat down on the mat, faces turned towards the teacher. Listening to the story about a lost dog…All except for Noa, who continued to wander and touch things. He was like a silent shadow, no one noticed him and he didn’t notice them.

I watched 30 little faces all semi listening (as 5 year olds do), squirming a little on their little Kinder mats. That’s when I felt him…the Green Eyed Monster. He was over my shoulder, telling me how much he wished that my child could be sitting down, listening to the story, understanding it and following the instructions. He told me that all these other kids were going to do great next year and that Noa would be in a limbo, between his world and ours…never fully there.

He told me that he felt sorry for me. That I couldn’t have what they have…seeming perfection and normalcy. That instead I have long meetings with lots of letters and lots of specialists all because Noa wasn’t like them…

I closed my eyes and tried to fight it…to drown out his voice, ignore that overwhelming feeling of pity and doubt.

And then she came, my hero, to save me from myself. She is my strength and my fortitude. She is Strong Me.

She is the one that has figured out how to juggle it all, that has made the sacrifices that create his safe, comfortable and loving environment. She gets it. She gets *ish done.

She came in, looked around and reminded me that normal is just a perception.

“You know it’s ok”, she said

“What?” I ask, trying to pretend that I wasn’t just having a full on pity party.

“To feel jealous…to want and yearn for what could be or would be. It’s a normal part of being a human.”

“I know”, I said. Now I’m feeling a little embarrassed. She has caught me with him. He’s smirking at her.

She rolls her eyes at him and speaks directly to me.

“So, what do you want?”

“I guess I just want him to be happy, I want him to feel comfortable and supported. I just want him to just be OK”

We both glanced at Noa who briefly looked at the children on the mat then went back to lining up art supplies in a perfect octagon on a table.

She asked me, “Don’t you think you can give him that?”

I looked right at him and for whatever reason, Noa looked right up at me and smiled. Then went back to his ordering project.

“Absolutely” I said, feeling more empowered and less anxious.

Green Eyed Monster jumped up, “Don’t you wish you could switch with someone, anyone in here??”

I paused. Thought about it and then answered, “No. I’m here, where I’m supposed to be, taking care of the son I’m supposed to raise…ANNND  I’m doing a damn good job if you ask me!”

He shrugs and wanders off, muttering the cartoon epitaph of “I’ll be back”

She winks at me and tells me to stop being a wussie.

30 min later it is time to go.

Story time is over. I’ve met some parents, chatted with all of the teachers and made it through the night.

Noa has successfully lined up most of the art supplies into a series of different shapes. He’s content and happy.

“Come on Noa, it’s time to go”

He looks up, looks around and sees the children and parents filtering out of the classroom.

“I went to Big School!” he says

“Yes you did! You did great! Let’s go home”

He takes my hand and we walk to the car. He is now chattering about shapes.

I buckle his car seat, Mr. Green Eyed Monster is hanging around, waiting to get in.

I close the door right in his face.

“Not today buddy, find your own damn way back”. 

Strong Me has shotgun and we don’t have anymore room today.

Just Fine

We are at my least favourite place in the World…the Playground. Noa, being the super outdoorsy kid that he is LOVES being outside. He runs, jumps, climbs and crawls until his heart is content.

Its great for him…stressful for me.

Because there is always that one mom/dad or parent that will invariably come to chit chat with me while I keep a watchful eye on Noa.

Wonderful adult small talk but always turns a bit awkward.

“Do you live around here? Where does your son go to school?”

I immediately tense up because that is definitely a loaded question. If I mention our suburb they may ask more questions. If I mention the school they will immediately know and that’s what starts the discussion…or not.

Sometimes its “Oh, the Autism School?” or “Really??? The Autism School?” or “Wow!! The Autism School?” …sometimes followed by an awkward stammering and their excusing themselves from the conversation.

My favourite is “Really? The Autism School?! But he looks fine!”

Groan.

Yes, he looks fine. He is fine. I’m watching my super athletic and agile son hang upside down and then complete a half flip to the ground complete with a cute Olympic style landing I showed him.

He’s totally fine. He runs and giggles and plays watching the other children. Always on the periphery, not necessarily engaged but still THERE.

He is fine. Because he has people in his life that are working to understand his needs and how to communicate with him.

He’s fine because he’s totally able to deal with all of the sounds, smells and changes around him now without having a complete meltdown.

He’s fine because he is now able to go out without wearing his noise cancelling headphones to prevent him from becoming overwhelmed and stressed.

I never understood the idea of looking at someone to assess their “normalcy”. I’m a doctor and I know that as much as I’d like to have X-Ray vision and the ability to touch people to diagnose them its not quite the way it works. You can’t see depression or anxiety or Autism or cancer for that matter.

I appreciate what they are TRYING to say. What they are trying to say is “Your child is autistic and seems to be doing really well with dealing with our surroundings. That is so great”.

So, I don’t get angry, nor do I stop engaging because I owe it to Noa and the millions of children and adults like him to explain what their world is like.  I have always seen myself, his father, our family and friends as the “bridge” to Noa. My job is to translate the craziness of our world into the words of his. I have to educate people that he is intelligent even if he doesn’t seem to be able to carry on a conversation and that his happiness is manifested just like any other 5 year old.

So I usually take a deep breath, smile and then tell them about how great of a kid Noa is and how far he’s come and what he can do and how to engage him. I tell them that he just sees and feels things differently and sometimes that different way can be overwhelming and intense. I explain that we teach him how to process his feelings and most importantly, how to do them in a way that everybody can understand.

I’m hoping that the friendly Park Mom that I met on Sunday “gets it”. She gave a slightly embarrassed smile and then glanced back over at Noa. She said “He looks like a great kid”

We are watching as Noa is drawing out a picture of a pentagon in the sand.

“Yep”, I answered. “He is just fine”

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.