1,460 Days

It’s been 1,460 days since we met. Well…technically not until tonight at 9:02 because you were an obstinate 24 hour labor, but who’s keeping score šŸ˜‰ ?

I didn’t know 1,460 days ago when you made me a mom that I was also becoming a special needs mom. I didn’t realize the journey that was ahead of us, the emotions that would come when I knew “something wasn’t right”, or the heartache I would feel when my suspicions were confirmed.
1,460 days ago, I also didn’t know that I could love another human being as much as I love you. I didn’t realize that a kid could be so quiet yet have so much to say, that someone who doesn’t like to socialize would be so affectionate, and that I would want so desperately to eat each and every single one of your toes.
My love for you is a different kind of love. It has components of fear of the unknown that make me check on you several times each night. It’s tangled up in an affectionate web of worry that has you on my mind almost all day long. It has me clinging to our good days and cringing when we have bad ones. I love you hard.Ā And a love that intense comes with a vast array of emotions.
But I’d like to thank you, my love. Over the last 1,460 days you have taught me that I can handle more than I ever thought. That I can take the bad with the good and remain optimistic, and how to prioritize my time. You’ve also given me the confidence to take on the world with you by my side and not give a you-know-what about anything anyone thinks or says about us.
I love your sister an incredible amount. And any future siblings you may one day have. But when it is all said and done, when I leave this place, I will leave here having loved you the longest and that counts for something.
Ā 
Happy Birthday, my love. Know that there aren’t enough words for me to accurately describe how incredible I think you are or that would capture just how much I care about you. Because I love you so much more than simply to the moon and back.
May the next 1,460 days be as amazing as these have been.
Love and Autism,
Mama

Happy Father’s Day

The first child you ever met with Autism was your son.

That’s a circumstance that you met with a steady hand, calm brow, and pocket full of patience.

I know you were excited when we found out that our first child would be a son. I know that you looked forward to playing catch and talking about dinosaurs together. I know also, that it’s probably disappointing that you haven’t been able to do those things yet.

What I know more than that, though, is that the grace that you have displayed in not having tossed a ball back and forth with our son or had an exchange about velociraptors versus t-rexes is to be commended. I know we speak often that we do not deserve praise or special attention for anything we do with our son because we’re his parents- we’re simply doing what we are supposed to do as those people in his life and it just happens that our situation calls for a little extra effort with him. You should understand, at least, that I notice you. I notice that you don’t force a ball in his hands because it’s something you want him to do, but that rather, you sit beside him nicely as he lines up rocks when we go outside. I notice that just because he doesn’t talk back to you, that you still continue to tell him everything about your days together and how proud you are of him every night when you tuck him into bed. And one day, I know the dino talk will come. In one way or another.

Today, on your 4th Father’s Day, I want you to know that you’ve been doing an extraordinary job being Caleb’s dad. His confidence, intelligence, and perseverance all come from you.

Happy Father’s Day, my love. Caleb won’t understand what today is. But know, anyways, that he wouldn’t be the incredible, amazing child that he is without you.

Love,

Erin and Caleb. May one year he find the voice to tell you all these things himself.

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The Decision to Pursue AAC

I got a new car in April that came with 3 months free of XM radio which I’ve been listening to exclusively as I have a guilty pleasure sort of love for bad pop songs. King of guilty pleasure pop songs? Justin Bieber. Duh.

I’ve read enough Buzz Feed pop culture lists to know he’s turned out to be kind of a punk. (Did I just lose some die hard Beliebers as followers? It’s a blog. I say what I want). BUT….ever since “Baby, baby, baby, oh” came out I’ve been hooked on the kid, I’m not gonna lie.

So he’s got this song out called “Despacito.” I don’t know what that means but I know I’m obsessed with the song anyways (please don’t hold it against me as I would like to give the disclaimer that I have NOT looked up the English translation to the lyrics but DO know I can get down with that beat down). I’m listening to it and because I’m a mom and everything in one twisted way or another makes me think of my kids…I automatically start bawling on the way to work and crying out loud that “Caleb is never going to speak Spanish.”

What? What WAS that? Who DOES that? For whatever reason, when The Biebs started singing Despacito in Spanish, I became so incredibly sad because I had this defeat flash before me that Caleb would never sing whatever inappropriate lyrics he was singing in a foreign language. Ok, ok, I know my meltdown is clearly representative of a bigger picture- a picture that when painted looks something like I don’t feel as confident about our verbal prognosis as I did this time last year. Because now we’re almost four…..and we do not have language that is functional enough to be utilized without any other communication modality in conjunction. And if we barely have English, and I don’t know when we’ll get it, is there the potential for us to ever have anything else with it?

I remember when I was pregnant with Caleb I was visiting my best friend in Alabama who was pregnant at the same time with her daughter. There was a very distinct conversation I remember having at this fair trade coffee shop over bagels and lattes about how I wanted Caleb to learn Mandarin because no matter what life and educational decisions he made, he could always make bank being hired as a consultant to business firms, banks, etc. interpreting for Hong Kong businessmen affiliates. She called me out on my Tiger Mom moment, told me I was cray- cause I was- and I hadn’t thought about it in years.

Until Despacito. I think what has been happening lately is that I’ve become resentful. Not towards Autism- I found acceptance awhile ago with that. But I maybe have been having a pity party about the fact that this incredibly intelligent, affectionate child not only has a developmental disorder that severely impairs his verbal communication but he ALSO has a neurologically based motor planning speech disorder so even when Autism wants to stand down sometimes and give this child his voice, Apraxia pops up all “Hold my beer- I’ll see about this…” and makes itĀ almost physically impossibleĀ for my child to speak.

The pediatric speech pathologist who has the quietest kid on the block. The irony is painful.

Ok….even after that angry outburst and “woe is me” moment…I still have a good handle on optimism and acknowledgement of the fact that he isĀ too youngĀ for me to know what he’ll be doing a decade from now. My highest of hopes is that he’ll be reading this and say “Mom, you’ve always been a spaz, haven’t you?” and that he’ll say it in whatever language he dang well chooses. But, until we get there- until we reach the point of crooning to young ladies on the other side of the mountain by singing an acoustic cover of Despacito (which will be on the oldies station)- we’re going to let a communication app help us tell our story. Because this kid has too much to say to not have functional access to a voice- even if it’s a modulated one for now. And he can’t be denied the right to that because I’m a crazy lady who cries about if he’s gonna be conducting international business deals in China or not. Like…really, Erin?

But, there it is for you. An open and honest (and partially irrational) Autism fear laid out for you. I know you have them too. And I promise you- whatever it is- you’ll get zero judgement here about it.

And Justin- if all the moons and stars collide and the universe sends this your way and you one day find yourself reading this, know that you helped me help my son find his way in the world for now. Because that day your song came on my trial XM, during a peaceful morning drive into Patrick County where I was the only one on the road, my heart opened up enough to realize the decision I needed to make for my son. 3 minutes and 49 seconds of your pop hit made me certain that it was time for AAC. And helped me remember to take my own advice and remember that there is no defeat when weĀ redefine our expectations.

Caleb- if it’s 10 years from now, I hope you’re reading this in whatever communication modality you’ve found works best for you and that you’ve grown up to be whatever you want. Except for Justin Bieber. If you’re gonna be a Justin, Timberlake is 100% the way to go. šŸ˜‰

Love and Autism,

Erin

To Not Be Left Behind

Maybe you thought that click bait of a teaser title would make this article about Caleb. Being left behind academically, with peer relationships, with his own family….and while those are all certainly fears and worries I have on my mind, this article is about his sister and a mistake I have come to realize I’m making in leaving her behind.

Ari goes to a weekly gymnastics class. We don’t go to learn back flips and handstands. We’re 2. We go because it’s more of a multidisciplinary developmental program- preschool in padded rooms. She has her own delays outside of her brother’s Autism. You can read about our initial concerns with her and where those concerns ended up here. So we go to be around typically developing peers and learn and grow. In the 9 months we’ve been attending classes, this child has never held onto the bars hung independently. It’s 100% a matter of gravitational insecurity. She’ll hang from my hands, climb up my legs, and flip backwards….but will NOT hang from the bars at class. There have been weeks when the skill on the bars was fancy stuff like independently putting their knees on the bars, flipping, dropping and landing, etc. And every single time one of those skills came up to be practiced, I would say to her teacher, “we know she’s not there yet but can we please just practice hanging?”. We’d put her up there, she’d let go, and so for 9 months we held our hands over her hands so she was doing SOMETHING during bar time. And every time she’d let go the instant we did.
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Until one day when she didn’t.
Two Sundays ago it was a bar skills day. And, just like every other bar skills day for 9 months, I took her over and asked if- once again- we could just practice hanging. We put her up there, her teacher held her hands on, and then suddenly- the strangest thing happened. She held on! I let out a spastic squeal of excitement and clapped and told her what a brave girl she was about 4985739875389 times. Her teacher took her off and put her back on again to test if it was a fluke- it wasn’t! There, as the other parents probably looked up expecting to see Olympic worthy floor exercises happening on our side of the gym, my daughter hung still and simply, with the proudest grin on her face. Her teacher and I gave ourselves high 5’s because when it takes 37 weeks for a kid to learn a skill, YOU CELEBRATE IT.
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You may say to yourself, “Erin- what’s the big deal? What do you feel guilty about?”. Let me tell you.
Before that, I don’t remember the last time I celebrated her like that. Being an Autism parent means that more often than not, the little things are all we’ve got. So when Caleb does virtually ANYTHING unprompted- be it a spontaneous word, a new play skill, a social exchange- we’re so excited….and admittedly relieved…..to see progress that we party like it’s 1999. But, what I realize in hindsight is that we have a different set of expectations for Ari. Which on one note is fair, because she’s a different kid with a different set of needs. But what I think may not be fair of us; however, is that we’re expecting her at 2 years old to do all these things she doesn’t see her brother do and that she’s not getting praised for. If Caleb came up to me and said “more bubble pop” I’d order fireworks and arrange a parade through Henry County.
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If Ari came up to me and said “more bubble pop” I’d make her tell me “pop more bubbles” and raise my eyebrow for a “please” on the end. Which she would do and receive a bubble, but no parade. And while different needs and abilities may warrant different sets of expectations, I need to be better at being aware that she needs her moments in the sun as well. Like when she hung from uneven bars as if she had been born pure orangutan.

Upon my reflection, I’ve also noticed that the different set of expectations has transferred to expecting her to give up things sometimes too in the name of being the sister to a brother with Autism. Maybe Ari got up first one day and got to watch a little Sofia the First but then brother got up and the tv automatically went to PJ Masks because brother’s here and he likes what he likes. I think the universe knew that because the rigidity associated with having Autism was going to make Caleb’s flexibility intermittentĀ so I got a go-with-the-flow baby the second time around to even my playing field. I have to be sure that her willingness to flow instead of fuss, to simply find a new toy if one is taken from her, and to not bat an eye when she sees mom and dad giving brother attention (both positive and negative), doesn’t result in her getting left behind.
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So, here I am, to reflect upon my flaws and move forward with more emphasis on doing a better job at evenly distributing praise while maintaining, at least for now, a different set of expectations for both of them. To understand that growing up the sibling of someone with special needs is going to put more on her plate than other children’s and that it is my job to mold her to be the sister that defends and stands by her brother, not to resent him for anything. Because how tragic it would be if this little spitfire of a girl didn’t fully know the depth of my love for her because I was busy giving sensory input to her brother and forgot to give her a love squeeze afterwards also? So, my little one, we’ll do better. We’ll do better celebrating everything there is to celebrate about you and making sure you know how incredibly proud of you we are. Because what will you two have if not each other?
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Love and Ari,
Erin