Sunday, April 2, 2017

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,

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