I'm trying to get there...

Saying "cheese" at church on
Easter Sunday. He's learned
if he just says cheese, Mom
puts the camera away, haha.

This post is hard to write.  Mostly because I feel guilty feeling the way I do.  It also goes against all the "moms of autism" posts I see.  Let me preface by saying I have a whole bunch of faith in this little boy and I know that the "eventuallys" and the "it is coming" is 100% true, but this is my emotions going through this in the here and now.

I read a lot of these posts: Even If I could take away the autism away I wouldn't, it is what makes my kid the way they are/learned so much more/they are pros at ___.  Well I am not there.

Nolan is young he's still 2.  He is almost 3, but he is still 2.  He doesn't have anything he particularly loves or is fascinated with so we cant take that and support it and run with it.  He doesn't communicate with us much so we we have no idea what he feels, remembers, or even likes.  I am sure talents, interests, and more will emerge in time, but right now its hard.  I feel like I am watching his peers pass him.  I feel like those kids younger than him are catching up to him.  I feel like we are just stagnant waiting for him to show us what to do next.

Right now, I still want the autism to go away.  I want my baby boy to express who he is, what he wants, what he likes, all that is him with out the struggles in the way.  I just want to be with my boy.  I want to find what he is best at and promote it, help it, support it.  I want him to find true happiness and continue to seek it and work with it.  One day, he will be the best at SOMETHING.  I just want him to be the best at something.  His something-his anything.   I want the challenges to making my boy a superstar to go away.  Why does it have to be so hard to find what my child loves and makes him happy.

He is going to be things.  He is going to love things.  He is going to excel at things.  He will have those things he is best at.  Today we are stuck at the autism.  Until we can get through these hurdles (with therapy which we are doing and growth we are seeing) I see his autism.  I see him held back.  I see him challenged.  I hurt.  I want more than anything to make his life happy and him successful.  You can bet as soon as I find anything he likes I run with it.  One day his autism will help enhance all that he is, will make his life more colorful, will make all that he is more special. Right now all that I feel is hidden in a colorful fog.

In my head I picture those color runs.  You know where they run through the clouds of chalk dust (imagine seeing all the colors and possibilities but having trouble seeing the path/where you are going, but when you finish the race and make it though you are covered in all these colors, they make the run all the more exciting and you have a sense of accomplishment--you earned each of those colors.  That is how I picture Nolan, his journey with autism.  We will get to the end of the race with all our colors and each one earned....but right now I am stuck in the fog.  Right now I am really struggling with helping him.

I am writing this because I want other parents who are struggling to feel ok for struggling.  Because every blog I read is after the run I want to know it is ok to feel cloudy.  I just hate feeling so foreign with my feelings (again here is my personal social anxiety of feeling like an outlier).  I want it to be ok to be angry with this. I want it to be ok that I cry every day that I just want to help my baby shine and be happy and I have no clue what he likes.  I want to feel like I am still his advocate, his mama bear, and I am still fighting like hell for autism awareness and acceptance while still being sad right now.  I want to know I can be both.  I am trying to get to those quotes. We, as a family, will get to those quotes...but we aren't there yet.

Different ways to Learn Language

Nolan learns language in a special kind of way.  He learns a script, memorizes it, uses it a lot, uses it in context, and then eventually learns what it actually means.  This  (in my simple understanding of things) is called echolalia.

I read Ten Things Your Student with Autism Wishes you Knew (I have this book if you want to borrow it!  It is a good read!) and that is when I got my best understanding of exactly how this works.  Here is the excerpt.

Here, Nolan fell on the trampoline.  We go through this script fairly often when he slides on the trampoline.  He is starting to fall (on purpose) on the hardwood or snow and do the same script. He is doing it for attention (which is a good thing for him!  He's seeking our attention!) and using it in context.  He says sorry because one time we bumped him and said "whoops, sorry!" and now that is all connected.

Other phrases he currently learned this way:
"awww, I got you" when he wants comfort or is giving it.  Basically any time he gives or wants a hug

"get out" when he is angry (when he would play in the dog water I would be angry and sternly tell him to "get out" so now he says it when he's angry.

"Wait" when he is frustrated.  When every he would be frustrated we would say "waiiit, we will help you."  Now he associates wait with frustration.

"Be nice" whenever hes anxious/doesnt want you to do that.  Mostly, whenever
Stella comes by.  This is basically a I have to be nice and I want her to be nice and she is getting to close kind of thing.  This originated from us telling BOTH of them to be nice to the other when ever they would get close.

We are working on changing up the script when he does something to expand the vocabulary and make the connection.  Example: when he falls, instead of whoops its slippery, I say, "Wow! did you crash down?" We are also working on naming the emotion and what is happening vs the phrases.  "I see you are angry that we turned off Paw Patrol, but it is time to be done.  I know it makes you angry but we are going to find something new to do." etc, etc.

It is very tricky to talk for you child.  Speaking how you want him to copy (saying I want a hug when you are giving him one, saying I am feeling angry when he is, etc) but we are seeing it pay off.  He will eventually learn it and know what the meaning of these words are, we are just taking a very interesting path there!

It is very difficult to me to not have a conversation with my child.  I want to know how his day was, what he thinks is funny, what he wants, what he did today, what he wants to do today.  I want him to be excited about things and want me to know about them.  I want to hear silly stories.  I have hope we will get there.  I dont know what this journey will look like, I dont know how long it will be but I have faith it will happen.  Most days I feel like I am running on my faith, but, in all honesty, aren't we all?

The Husband's View

I never fully understood why my wife blogged. I'd say things like "Oh darling, my dearest sweetheart (that’s how I always greet her), people have their own s*** to worry about… they don't need to hear about our issues, too" and "Who even reads that stuff anyway? Isn't Facebook for pictures of babies, attention-seeking people at gyms, and dinners made by people you don’t care about?" Other than during Packer games, I've never been one to speak my feelings much (I can hear Siraya screaming “You don’t say!”) especially on social media, so this is all seemed odd to me. But then I'd hear her talk about the people that message her after she posts. Friends of friends she didn’t even know reaching out to her thanking her for saying things they can't/won't. Thanking her for making them feel like they aren't alone, for giving them a voice. Thanking her for being unafraid...fearless even. I see now that she is serving as not only a wonderful mom to an equally wonderful boy (who just happens to have autism), a therapist, an educator, and an advocate, but also a role model to others in similar situations. That is a lot of hats to wear. Many of her pages have had over 1,000 views, one has over 10,000 and counting! Since she started being a stay at home mom instead of being a 4K teacher, I can tell she has been searching for more meaning, a way to help others outside her family. She started selling books, which is a passion to her for obvious reasons with her education background. She is darn good at it too (no surprise). However, she is making a difference with her words now, too.

Even before the diagnosis, Siraya and I talked through everything and knew we wanted to take autism head on. We have thrown ourselves into everything we could. We signed up with birth to 3 for OT and speech, we got the ball rolling on ABA, we went out and got literature to learn everything we could, we even purchased toys and swings that could help with his therapy. Our thinking is we are never going to regret trying too hard to help him be all he can be. But I'd be lying if there aren't times of trial, sadness, grief especially with sleepless nights (because of him AND Stella). We do our best to talk through these feelings to get through hard times. Like I tell her from Finding Nemo "just keep swimming." Seeing everyone wearing blue today and posting pictures about Autism awareness really meant a lot for us today. Autism is part of our life every single day. The good, the bad, the ugly and the ridiculous. Seeing others recognize that and support us means a lot.

I have always made an effort in my life to not complain. I try to remember there are always others who have it worse. That being said, there have been nights I have sat by Nolan’s bed and asked God "Why this kid? Why does he have to struggle?" I prayed for God to change my son. We went through the stages of grief; denial, anger, bargaining, depression, and are now trying to embrace acceptance. At first, I’d wish for this different, better child to come out from hiding behind this autism disease. I have learned to celebrate my “wild child” and his quirks, encourage all the strengths, and do everything I can to improve his weaknesses.  I also try to see autism as a challenge instead of a disease. We believe we have an attainable goal of ultimately having him be in a regular classroom without support. With the support of our family and friends, the in-home therapy, and of course of remarkable background my wife has in educating young kids, I am supremely confident about Nolan making every goal we set for him and he sets for himself.

To me, the three hardest things about Nolan being on the spectrum are 1. Not being able to enjoy those milestones that other neurotypical (NT) seem to, 2. The fact that he seems to not care to interact with his (way too beautiful) sister Stella, and 3. Not being able to communicate with him normally. My wonderful wife has taught me to appreciate the small little miracles each day. No, he can't play pretend like other NT kids, but the other day he pushed a train and said “Choo-Choo.” This evening he bumped his head on a side table (an everyday occurrence, except this time he was naked, not getting into that) but he came up to me, sought comfort, said “ouch.” Then when I asked him where he said “head” and pointed. WOW, him pointing and verbalizing gave me goosebumps. Some things I wouldn't think twice about for the average kid, but for us it is an absolutely huge deal. His lack of interest in his sister might have been the biggest red flag for me before his diagnosis. I mean there was another human in our house for weeks and months and I literally don’t think he noticed. He is getting better at playing alongside of her but I don’t want her to feel left out or unloved by him, this still causes me to worry for her. The other big struggle is with language. Nolan’s language is mostly echolalia meaning he copies things we say to him like a parrot and tries to relate to how he's feeling. He says "got you" when he needs comfort "be nice" when Stella is in his bubble, etc. Basic feelings are hard for him to communicate and it can be really frustrating having that barrier between us, especially when he feels frustrated and melts down. Him being cold can ruin our time at a parade. Him feeing hungry can cause an absolute meltdown inside the children's museum. "Why didn't you tell us you were hungry Nolan?" But, at the same time we feel very blessed. Nolan has the ability to speak, albeit limited, whereas one third of people with autism are non-verbal.

The universe works in mysterious ways. In the months since the diagnosis, I have stumbled across more thing about autism than the first 29 years of my life combined. Sesame street is adding a character with Autism. Tons of people have shown support in person or online by wearing blue for World Autism awareness day. The other day on my drive from work which is only about 15 minutes, I was thinking about how excited I was to spend a few hours with my family after a long work day. Usually when I get home I can tell Siraya needs a break. Our kids are wonderful, but sometimes there is only so much crying, poop, and stimming a person can take. I turn on my radio and heard two songs back to back that I've heard a dozen times and thought nothing of it. Now they take on a new meaning with Nolan’s diagnosis.  All of me by John Legend was the first one, this is the part that hit home for me.

What's going on in that beautiful mind
I'm on your magical mystery ride
And I'm so dizzy, don't know what hit me, but I'll be alright

My head’s under water but I’m breathing fine

You're crazy and I'm out of my mind

'Cause all of me Loves all of you
Love your curves and all your edges
All your perfect imperfections
Give your all to me, I'll give my all to you
You're my end and my beginning
Even when I lose I'm winning

Next was True colors from the movie Trolls by Justin Timberlake and Anna Kendrick.

I see your true colors shining through

I see your true colors and that's why I love you
So don't be afraid to let them show your true colors
True colors are beautiful

Many times, Nolan seems to live in his own little world. We are going to do everything we can to try and live in it with him. He is our sweet boy, albeit a little crazy sometimes… like my wife (that’s gonna put me back in the doghouse). At my high school graduation, I made a speech about how during our lives our view of superheroes changes. It starts out as mommy and daddy, then batman and superman or whatever princess girls these days like (I’ll learn soon with Stella I’m sure). Ultimately, we can all be superheroes whether you’re a doctor, or lawyer, a plumber (have you ever tried living without running water?), or salesman giving somebody that needs a break a good deal. At this point in my life, Nolan is a super hero. My wife is my super hero. I put my kids down with my wife tonight, and I can’t help but feel so incredibly blessed. Nolan is not the kid we imagined. But what in life goes as planned? The unexpected twists and turns keep us busy. I always expected parenthood to be a learning experience for all of us, but I never thought Nolan could teach me all he has in his 31 months on this Earth. Because of him, when I pray tonight, it won’t be to change my child. It will be to change me…to be a better dad to Nolan and Stella, a better husband to my smoking hot wife.

Thanks for reading my words. I hope this proves to my wife and the world that I do in fact have feelings.

Go Pack Go,

Alex