Thursday, March 7, 2019
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. 😊
Tuesday, January 22, 2019
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.
Friday, December 14, 2018
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.
Wednesday, November 28, 2018
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.
Strong Me has shotgun and we don’t have anymore room today.
Tuesday, September 25, 2018
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”
Monday, June 11, 2018
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.
Friday, May 25, 2018
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.
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.
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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 ...
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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 ...
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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 wor...
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Noa sees things that we just don't see. He sees the extra angles that differentiate a dodecahedron from a decagon (go ahead, Google i...





