Light It Up Blue

This post has probably been a long time coming.
However, I haven't written on this yet, mainly for myself. Brad and I both needed some time to process and figure out where to go from here. But considering what month it is, I felt it was only fitting to share now.
Y'all already know that Noah doesn't really talk much, if at all. He's certainly "chatty", but the majority of what he says is indiscernible.

A couple of weeks ago, we had a cognitive evaluation for him. This particular lady actually saw him for his original Early Intervention evaluation last year. She went through her regular routine, and Noah did amazingly well. He completed puzzles, found items under cups, fed a baby doll (without being prompted!), and other stuff like that. She was patient and gave him a couple of breaks when she could see him getting overwhelmed.

Here's the thing.
Up until very recently, under regular circumstances, Noah came across as a normally functioning two year old, just maybe with a few quirks (what toddler isn't quirky??) . He's social, smiles when you smile at him, has good eye contact, and virtually zero behavioral issues. However, when he's stressed out, tired, overwhelmed, or being pushed? Certain behaviors start coming out. He'll start studying random objects or stare off, flap his hands occasionally, tune people out, etc.

Before now, these things were just something to keep an eye on. The therapists weren't convinced that there was anything to worry about yet, because any of his quirky behaviors weren't very severe. Plus, he was still so young, they wanted to give him a chance to develop more... especially considering the developmental patterns of the males on my side.

Our concern was that most of his major signs or issues stem from sensory processing. He is SUPER sensory seeking. He's never bothered by certain textures or sounds. He loves to watch things spin, does a lot of visual play, and tactile learning. The reason we had yet to accept any kind of autism diagnosis is because we didn't want him mislabeled. The therapists weren't too concerned at the time, and every time I talked to other mothers, their kids were doing similar behaviors (not talking until 3 or just playing around other toddlers, not with) and kept reassuring me there was nothing to worry about. We were getting him the therapies he needed without a label, so at that point, it was silly to worry about that technicality. He's not in school yet, and therefore the resources available to him weren't really going to change as a result. I've seen way too many children (many in my own family) get misdiagnosed. They were labeled with ADD or Auditory Processing Disorder or something along those lines, when really? They're probably autistic. I've also seen kids get diagnosed with autism who, later on, were misdiagnosed and relabeled with something else. It's a funky disorder that can be difficult to pin down in some cases. So for us, we chose to wait. Wait and see what kind of progress he made, what characteristics seemed to develop/subside/stay-the-same, and what he needed additional help with.
This woman told us that there have definitely been major improvements since the last time she saw Noah. Even so, she said had this been a test for autism, she would have labeled him that day, with zero hesitation. He would certainly be considered "high functioning", but he has enough red flags to convince her of it. So as of right now, he's been unofficially diagnosed with autism.

Where we're headed at this point is still up in the air. We have a lot of decisions to make, people to meet, and enough acronyms to make our heads spin.

To be perfectly blunt, we simply can't afford all of the therapies he needs.
That may sound like a cop-out, but I promise it's not. Even if we cut out ALL "luxuries" (cell phones, cable, once a month trips to Panera, etc), it still wouldn't be enough. Our healthcare system is so screwed up. Those who pay insurance can't get the services they need (us). Those who don't, get them for free. Yes, they do give you an amount to pay, based on your income. However, we (and I'm sure many, many Americans at the moment) look much better on paper than in real life. There are so many external factors that affect finances... gas prices, car issues (which we kind of need for Brad to get to work), food, clothing (we only buy consigned, on sale, or incredibly inexpensive), and other things that are necessary for survival in the US. Our vacations that we may go on once or twice a year? They're free, except for the gas and food. Every piece of furniture we own is a hand-me-down or something we got for free/dirt-cheap. So it's definitely not an issue of "we just don't want to give up the things we like". It really is a "do we pay for occupational therapy or eat" type of circumstance.

For Noah to get any kind of progress? He'd need several of these therapies at least once a week, preferably more. Since that's not an option, this momma has been doing some research, working as much as I can with him at home. I'm so so appreciative of the pros out there who have made resources available through blogs/websites; for amazing SLP friends willing to help me; for moms who have been there to lend some encouragement; and for an incredible EI coordinator who is so understanding, has helped us tremendously, and has never ever made me feel like a terrible mom for not signing Noah up for every therapy under the sun (seriously, if you're in Gaston county, ask for Amy. She's the best!).

Thankfully, once Noah turns three in August, we'll be able to get everything he needs through the public school system. It'll be the same quality of care, but we won't go broke as a result.

How am I in all of this?
At this point, I'm actually doing really well. Usually when faced with a challenging situation, I cope in odd ways. Typically, I do the whole "rise to the occasion" type of thing where I ignore how I feel and do what needs to be done. If I dwell on the fact that I've only heard my boy call me "Momma" a handful of times, then I know I'll go to a bad place. I don't want to go there. I would rather choose joy in the situation than stew in negativity. Over the weekend after the news, I did notice myself feeling a little extra antsy. And for the first time in years, I bought some Cool Ranch Doritos. So that's probably how I'm dealing at the moment.
But honestly, I'm not sad or angry. I've only cried once over it. Of course, I tend to internalize my emotions, then explode in a random sobbing mess weeks later. But right now, I'm fine. If anything, I'm a little overwhelmed with all of the information and decisions to be made.

But God is in total control. My little guy is in His hands, and I know we're loved. God knows exactly what Noah is thinking, feeling, and trying to communicate. Jesus is the best advocate my little man will ever have... He is the voice that my baby has yet to find. I can't explain it, but without Noah ever having to utter a word, I know exactly what he's thinking, feeling, and trying to communicate. Everyone else is clueless as to what he wants but me. Call it mother's intuition, but I know better. God has given us, in some incredible way, this ability to communicate without words or gestures. All Noah has to do is look at me, and I know. Just that alone that gives me so much peace. The Lord has a plan for all of us, and this. So really, that's how I'm dealing, I guess. Trying to focus on God's promises.

Because really? It's just a label. Noah is still the same sweet, innocent, giggly little booger that he's always been. He just needs some help. The world is not ending, and there's a plan in place. We're all going to be just fine. :)
  

"And we know that in all things God works for the good of those who love him, 

who have been called according to his purpose." Romans 8:28 

For more info, visit Autism Speaks.

Last night, we decided to "Light It Up Blue" for our boy...