Living with Autism

(I really don't know where I'm going with this. I just needed to write, vent, and process. It's hard being a source of strength 24/7. So this is me being real. Please be nice, because this is my heart.)

I rarely ever blog about how autism has affected our home.
I don't even go there most days. This is just life for us, and 90% of the time, I don't even think about Noah being "different" or "autistic". I try to embrace the quirks and unique challenges that come with the territory, firmly planting a smile on my face when people ask me about it. Of the two of us, Brad is the borderline pessimist realist, so I assume the role of cheerleader. He worries, and I reassure. That's just how we work.
Brad worries Noah will never do the whole, "Daddy, you're home!" thing when he walks in the door from work. I celebrate the tiny victories, like when Noah says "Momma" for the first time in almost a year. Or when, at almost 3, he finally gets the courage to climb up the ladder at the playground. It's just how our personalities click.

But some days?
Some days I don't feel like being the cheerleader.
Some days I listen to other moms complain about their typically developing toddler and the normal challenges that come with that age. Challenges like getting them to be quiet for 5 minutes. Or that they won't eat their broccoli. Or that they're almost 2 and "still not potty-trained".
And I think... seriously?
You have no clue.

Usually I'm okay. I don't get mad at the moms for whining that their kids "wwwooon't stttooop taaaalking!!" Their struggles are just as real as mine. Just different. Looking at it that way keeps me from getting down (and consequently wanting to throw things at the computer. haha).
However, being the age that I am, most of my friends have young kids now. My Facebook and blog feed are filled, daily, with the latest thing their baby has said or done. How cute it is that they pronounce words funny or say such witty things. Pictures of them blowing out their birthday candles and announcing what they want for gifts this year. Most of them much younger than Noah.

And I ache.

Many times I take breaks from reading blogs or status updates on Facebook. There are days when I just can't handle any more.
I don't delve into our daily struggles... hearing words like "low tone", "sensory processing disorder", or "poor eye contact". While most moms are worried about potty training, we're still trying to get Noah to respond to his name.

Noah won't blow bubbles, much less a birthday candle.
I go throughout my day, having a conversation with him... yet not. I talk and talk and talk, almost as if he actually does talk back. Like you would do with a baby, trying to encourage speech. Do you have any idea how old that gets? I've been talking to myself for three years straight. I'm going to be the crazy old lady who talks to herself at the grocery store.
I'll ask if he wants to watch Thomas or George. Or if he'd rather have an apple or a banana. Usually, all simple choice questions are met with a blank stare.
His diet is extremely limited. He refuses so many foods that I know he likes. Food he used to gobble down as a one-year-old. You think it's annoying when your 5-year-old refuses to eat broccoli? Try having them live off of goldfish crackers and a tomato, every day (not Noah, but another kid our coordinator works with).  That's life with a child with autism. Trying to do all kinds of ridiculous dances and techniques to get them to at least try typical kid favorites like watermelon or even chicken nuggets! 
Grocery shopping is a challenge, because I never know if he'll actually eat his normal staples or not. One week, he'll be obsessed with apples. The next? He tosses them like a baseball. Part of it is a normal toddler thing, declaring independence and all that. But some of it is sensory-based... suddenly he refuses all things cold, because he can't handle it anymore.

His sleep patterns are odd. I use to think I was doing something wrong, but now I understand. It's not a stubborn thing or my being a bad parent. It's total sensory stuff. He wakes up in the middle of the night and seeks that sensory input. Other nights he'll wake up crying for no apparent reason. The other night when this happened, I let him sleep in our bed for the first time since he was a baby. And while I don't plan to make this a habit (does any parent plan for it to be a habit?), it was really nice. 
You think it's tough when your kid won't go to bed at 8pm one night? Try 5:30 in the morning. 
I try not to plan appointments in the mornings, because I never know what Noah will do with his sleep. He may go to bed at 10pm, sleep all night, and wake up happy after 10-12 hours. Or? He could sleep 6 hours, wake up at an ungodly hour, and want to run around and jump, crashing around 10am. Or like last week, he could stay up ALL night and sleep till noon. There's no rhyme or reason.

Kids with autism have limited imaginations, so while other kids are pretending to be animals or their favorite superhero, I'm just happy if Noah is playing with a toy in its correct way (which he's doing now! woohoo!).
 
Basically, everything I thought I knew about raising kids? HAHAHA.
I thought I had it all figured out. Everything I used successfully on my younger siblings, nieces and nephews, and kids I babysat for? Doesn't apply. Special needs laughs in the face of expert parenting techniques and books. Because they're all different. Each child, especially with autism, is different. They're affected differently, and therefore each technique may or may not work.

Life is filled with questions.
Will this type of therapy work? Should I go private, public, or home school? Why won't he eat his favorite foods anymore? How will I get him over his cold-food aversion? How are we going to afford this therapy bill? Will he ever talk? Will he have friends? What if he can't live independently when he's older? How will this all look when he's 18?

And don't even get me started on his therapies and education. Things that come naturally for most children, we have to spend an insane amount of money to help him achieve. The majority of insurance companies don't cover therapies, even though it's essential. The photography business I started? It's not because I was bored at home. It's a passion of mine, yes. But it's also a form of income for us. I use it to pay bills. It's not frivolous, fun money that I use to go shopping with. It's going towards my son's chances of living a normal, productive life.
We found a Christian school (incidentally, one connected to the same one I graduated from) that specializes in kids with autism, implementing ABA therapy as part of their curriculum. To have that in our area, where TEACCH rules (it's based out of Chapel Hill, so TEACCH is pushed heavily here), as part of the school is amazing. The only problem is that one year's tuition cost more than in-state college tuition. More than quadruple the rate of regular tuition. Yeah. We don't make that kind of money. Not yet at least. So those questions and worries flood my mind. Can I handle homeschooling him? Can we afford normal ABA therapy? Will they accept our application? Will it even help him? I spend countless hours researching, reading, talking to experts and other experienced moms... searching for answers and hope.
We throw what money we do have at people, in hopes that they'll be able to help our baby.
Our daily routine with Noah involves therapy techniques from sun-up to sun-down. Anything I learn from therapists or the good 'ol internet (reliable websites), I put to practice.

Everyone has an opinion about my child. What he should be eating, what therapy we should be implementing, what type of education he should receive... it's endless. I have a million different opinions flying at me from all sides, and it's not easy silencing them in order to figure out what's best for him.
While strangers and acquaintances are automatically drawn to him, they still look to me when he doesn't respond to them. They try to talk to him, and sometimes they think he's deaf. Especially if they see us signing to him.

Imagine having something different about your child, yet there's no definitive why. There's no cure. Treatments and successes vary with each child. There are no guarantees. You have no idea how thankful I am that Noah is at least healthy. That this is nothing fatal. I bow down to those strong mommas who deal with that kind of diagnosis every day. I have friends that deal with so much worse. And I'm sure they look at my struggles and think, "Seriously?" It's all so relative.

Don't get me wrong. I don't envy others' children. I adore my boy, inside and out, quirks and all. His attitude inspires me daily. It must be so frustrating not being able to communicate, yet he remains the most upbeat, sweet-hearted little guy.
He is my heart and soul, and that is why I plaster the smile on my face, even when I don't feel like it. Every minute spent in therapy sessions, every tear shed (by all of us), every nosey question answered... all of it has been worth it. I've grown so much as a person through all of this. He's taught me how to truly choose joy in challenging circumstances. I've learned how to be a true advocate for my him. How to love beyond words and the obvious actions. How to stretch my patience out just a teeny bit further. Because I know he doesn't understand. He doesn't understand that he lives in a different world than we do. He has no idea how much we worry and pray for him. All he knows is that he wants to watch Curious George, play with his Thomas railway, and be tickled and held by his mommy and daddy. His innocence is refreshing, and his smile? Contagious.
I just want to freeze him like this, so I can hold him forever. Prevent him from ever being lonely. Protect him from others who won't understand. But all I can do is help him learn and grow, and to model the character qualities I want him to pick up. And then hand the rest over to God. Trust that He'll do a much better job of loving and protecting him than I ever will. As fiercely as I love my baby, I know he's loved even more by Another. One who will never leave him.
I'm so so thankful for Noah.
And, yes, I have my moments where I need to vent. Where I come off a tad selfish and emotional. But ultimately? This has been one of the biggest blessings of my life.

                                                                      Source: s936.photobucket.com via Amanda on Pinterest