Mountains and Valleys

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Life is lived in mountains and valleys.

Put aside the idea that a valley is flat and smooth and easy to walk. In life, it can be easy to feel trapped in the valley.

In a valley, you can’t see even a hint of your destination. Surrounded by high mountain peaks, you just have to keep walking, keep moving and hope that you’re headed in the right direction.

Despite the difficulty in getting there, being on top of the mountain brings strength and surety. From the top of the mountain, the view extends for miles. The lay of the land is clear, and sometimes even the destination is within sight. A plan can be made to find a way to get there.

On the top of the mountain, there is clarity and optimism.

In the valley, there is insecurity and doubt.

In raising Toby, I find myself often in the valley, while occasionally reaching the summit and getting clear view of the future.

Sometimes I feel confident. I feel assured. I feel certain that he will successfully reach his full potential, and live a happy life that is meaningful to him.

Other times, I feel stuck. Dealing with an obstacle or problem, I have to keep my head down and power through, hoping that we can make it. We walk through the night while a voice in the back of my mind wonders if we really ever stood a chance.

Yet in the valley, there is one thing I can cling to when the worries and doubts cloud my mind and press heavy on my heart.

I know we can get there. I know it can be done. I saw it. So clear, so tangible, so attainable.

I saw it from the mountain.

Bright and hopeful in the distance, I saw it. The road, though littered with obstacles, is passable.

And every day we walk we become stronger.

 

Special

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Lately, I’ve been feeling a deep-seated need to focus on the positive. There is so much sadness and difficulty that comes with having a child with autism. The heartbreak in the extra measure of challenge that your child faces that other children do not. The sorrow you feel sit heavily on your heart as you watch your child struggle to interact with other kids. The knot in your stomach when you hear another child say words that are unknowingly unkind.

Yet buried beneath this heaviness, is a special brand of joy.

There is a unique and indefinable quality that special needs kids have. Something that makes them such a pleasure to be around, to watch them as they learn and grow. Seeing a child with extra challenges beat the odds and learn a vital skill gives a joy and satisfaction that cannot be duplicated.

Our son Toby was blessed with a unique personality that draws people to him. He is likely the most enthusiastic little boy you will ever meet.

He gets so excited about the little things, like taking the dog for a walk, or pancakes for breakfast. It’s contagious too; most people that meet him can’t help but smile. Even if they don’t understand what he’s saying, they still pick up on his inner exhilaration.

Give my boy a Star Wars toy, and he will be over the moon with the kind of excitement that we only see in lottery winners and adrenaline junkies.

The distinct kind of happiness that comes from a child with autism or other special needs does not, however, diminish the enjoyment of children who are neurotypical. I have one child from each of these worlds in my home and I find that they complement each other wonderfully. They love, teach, and help each other.

Despite the hard things about having a child with autism, there is still much to be enjoyed. We are parents of special needs children– and they are truly, genuinely special.

Mr. Potato Head

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Mr. Potato Head is the toy I hate the most.

Never mind his ugly bulbous face and his stupid smirk. I have much deeper reason for my detestation of Mr. Potato Head.

Mr. Potato Head told me my son was autistic.

The way Toby played with Mr. Potato Head was non-functional. From a very young age, he would stim with the individual pieces. He’d wave them around while humming in monotone, and not put them into the face at all, let alone the right slots. Before his diagnosis, I didn’t know what he was doing. I thought he had some really interesting scenarios going on inside his head. I didn’t know he was getting lost in his own mind.

When we began to be concerned about Toby’s development, one of the doctors we saw asked me, “How does he play with toys?”

I thought of Mr. Potato Head.

The doctor frowned when I told her, and mentioned the word “autism” in relation to my son for the first time. When we finally got in to see a specialist, Mr. Potato Head came up again. Another tally against Toby. The final thing that put us over the cliff where we landed in a big fat pile of autism information packets.

Still, I tried not to hold it against Mr. Potato Head. After all, it wasn’t personal. We kept him. For over a year after Toby’s diagnosis I kept him, trying and hoping that he would learn to play with him appropriately. I wanted victory over his vegetable face. But one day, I snapped.

I gathered up all of those staring eyes, seriously rude stuck-out tongues, oval noses and black bowler hats. And I put them in a plastic bag and sent them to Goodwill.

Why should I keep such a painful reminder in my home when it only breaks my heart all over again, every time I see Toby playing with him the same way he always has? The habit to stim with those toys was a very, very powerful habit. Even though I was trying to help him overcome that pattern, I decided it just wasn’t worth it. There are plenty of small-scale toys in this world that I can use to teach Toby to play with, instead of stim with. I just couldn’t look at those dumb potato parts that told the world my son was different anymore. And you know what?

Nobody misses him. Not at all.

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UPDATE: Toby’s daily notes from school

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Literally, in your face Mr. Potato Head.

I still hate you.

The Black Sheep

"Recue of the Lost Lamb" by Minerva Teichert
“Recue of the Lost Lamb” by Minerva Teichert

Note: A non-denominational version of this post was also published on FamilyShare.com

This past summer, my husband and I had the blessed opportunity to fly out to Utah for my sister’s wedding. Unfortunately, summertime isn’t our autistic son’s easiest time.

Keeping structure and a routine during a summer break is especially challenging, and Toby’s ability to function at his highest level depends heavily on those two things. The stress of the relaxed summer schedule (despite spending a good portion of the summer in school) had prompted Toby to “self-injure.” Basically, a dangerous combination of frustration and boredom ended in Toby pulling a still firmly-planted baby tooth clean out of his mouth. Right before my husband and I left for Utah.

Traveling is stressful. Leaving your children, no matter how much you trust those you leave them with, is stressful. Leaving your children when one of them has expressed extreme annoyance with life by ripping a tooth out of his mouth is stressful to the max.

I spent the majority of my time on the airplane praying for Toby and for my dear in-laws who were watching the kids for us while we were gone.

When we arrived in Utah, a whirlwind of the most beautiful chaos engulfed us as we helped my sister with her last minute to-dos. Though very jet-lagged and very worried about how many teeth Toby would have left when we got back, it was a special and wonderful time so full of love that I will never forget.

Walking into the Bountiful temple the morning of my sister’s sealing, I was intending to go upstairs with my mom and the lovely bride to help her get dressed and with any other final touches she might need.

As we turned a corner in the foyer, I stopped dead in my tracks. I barely heard the sweet temple worker gently tell me that only one person could go up to help my sister get dressed to avoid overcrowding the brides’ room. All I could see was the painting.

Hanging on the wall was a colossal painting of the Savior, in His role as the Good Shepherd. He was on a beautiful hillside surrounded by a large herd of white sheep. I have no doubt the Savior loves and knows each of those sheep, regardless of their walk in life. Yet, what struck me about this image was that, lovingly cradled in His arms, was a black lamb.

The different one. The lamb not quite like the rest. The lamb that might be a little odd, or need a little extra help with some things. Like my little black lamb.

My heart was flooded with the love and reassurance of the Savior. In that moment, I felt the Lord tell me He would always love and take care of my different little boy, whatever challenges he might face. I felt His promise that His loving arms would always be open to my little black lamb, no matter what.

I’ve thought a lot about this painting, and I’ve thought a lot about this day. Through the rest of our time in the temple I felt over and over again the reassurance that the Lord would always be there for my son, for my family and for me. Watching my sister get married to the love of her life was an even more powerful confirmation that He knows us and wants the best for us. My sister received that truth in the temple that day when she was married for time and eternity to a man that the Lord had saved specifically for her. And she for him, as well.

The black sheep is something almost everyone can relate to. The uncomfortable and sometimes even depressing feeling that we are “different” or that no one could truly understand us may happen at one time or another. I know I’ve felt that way many times in various stages of my life. Despite the fact that this blessed moment of clarity happened months ago, recently I’ve felt like I needed to testify of this:

The Savior always understands us, loves us and will be a constant presence for us if we let Him. No matter the struggle, no matter our differences, and no matter who we are or what path we’ve walked. He will be there, His loving heart and loving arms open to carry us safely home.

Thanks to heaven’s blessings and diligent, caring grandparents Toby didn’t mess with his teeth the whole time we were gone. I was so relieved when we got back. However, the very next week, Toby pulled another tooth. This time, I took a deep breath and reminded myself of what I learned in the beautiful Bountiful temple on my beautiful sister’s wedding day.

Though my little black lamb may have difficult paths to trod, he will always have the Good Shepherd to watch over him.

A Chip on My Shoulder

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Sometimes I feel like I have a chip on my shoulder. Like I’m a “martyr”.

How could anyone with “regular” kids possibly know what I go through?  All those other normal moms of normal kids have it so easy. They don’t understand how difficult my world is.

I’m beginning to see that may not be true.

I’ve come to the realization that I’ve been walking around, subconsciously putting myself above others because I have a child with a disability.

It shouldn’t be that way. How did I get that way?

The fact of the matter is, we all have challenges. We all have difficulties. No one is the same and neither are our obstacles.

Just because Toby has autism, doesn’t mean that my trials are more difficult than anyone elses. All kids have their own different personalities and issues. Even if a parent has healthy, neurotypical children, it doesn’t mean that there isn’t something else in their life that is equally as difficult as having a child on the spectrum.

I shouldn’t feel like my trials, although they are hard to me, are worse than anyone else’s. My life is actually full of blessings and wonderful things. Some of which I wouldn’t even have if it weren’t for Toby’s autism. There are good friends I would never have made. Empathy I never would have developed. Growth I never would have had.

I also know it could be so much harder. Despite Toby’s autism, he will still likely be an independent adult. He can learn to do most things for himself. He won’t need to be in a “facility”, or need constant care. His mind is perfect, just wired differently.

Toby is here, in my arms. Many parents cannot say the same for their child.

It’s time for me to stop comparing trials. Everyone has a battle, a struggle, or a weight on their shoulders. There is no need to hold my head any higher than anyone else’s.

I deal with what I am given. Just like everyone else.

Everyone has their unique set of challenges. The set of challenges we are given, are hard to us. They are specifically designed to mold us into the person we are meant to be.

I admit, I thought that having a child with autism would help me learn to be less self-centered. Now I think I’ve just become a different kind of self-centered: My child and his disability aren’t the most important thing in the world. It should be important in my world, but there is no reason for me to believe (however subconsciously) that everyone should have sympathy for my family, or that they know nothing of struggle and despair.

This realization has a lot to do with a phone call.

My sweet, patient mom, who has done nothing but be there for me through every hard time in my life, called me. I spent so much time venting and complaining to her that she couldn’t get a word in. I quickly said goodbye and hung up when I had another colossal mess to clean up and yet another time out to give. The next day, she called me. I was too “busy” to pick up. The next day, I finally called her back. For three days she had been trying to tell me that she had received some very bad medical news about my aging grandmother, her mother. My grandmother had been diagnosed with Alzheimers,  and I was too focused on my own troubles to hear her.

Of all people, the woman who has been the most constant source of support and love in my life, and I couldn’t even take the time to hear her.

It seems clear now that my world needs just a little less “I” and a little more “We”. We are all in this together. Whether we are connected by autism or depression or family trouble or loss or whatever difficulty; we are all universally connected by struggle and pain.

We all have things to deal with. Let’s focus on how we can help each other. Not who has it worse.

And I say that, adamantly, to myself. I must’ve turned inward somewhere along our autism journey.

Now it’s time to turn outward.

Remember those days?

This was written when Toby’s behaviors were much more severe than they are right now. He no longer has outbursts of this degree. 

One saturday morning last year, a neighbor surprised me at my house on a day when Toby was losing it. She sweetly offered to watch him for me, but for whatever reason his fit had ended when she walked in and I knew the “switch” had flipped back off and he would be fine until my husband came home from helping someone move. I sincerely appreciated her offer and her concern.

What bothered me was this: She said to me “I remember those days….”

No you don’t. You’ve likely never had to lock your young daughter in her bedroom to keep her safe from her out of control brother. How often did you have to fend off a scratching, hitting, kicking and biting little boy? Most likely not as often as I do, at least every other day. I have scars from the scratches, on my arms and on my heart.

Nothing hurts as much as being physically harmed by your own child.

I experienced so much stress and tension in the years prior to my son’s diagnosis, and every mother I knew assured me it was “normal” for him to do some of the things he did , and that I should try this method or that method. To be fair, Toby is mild (verbal, social etc), and not everyone can tell that he has autism, but he is also very small for his age and sometimes people think that he is younger than his three year old neurotypical sister. Once he was diagnosed, it became all too clear to me that everyone but me knew something was different about him. But no one wanted to make me feel bad so they acted like it was normal.

I know that the young years are not easy for any mother. But I think that in an effort to make me feel like a “normal” mom by empathizing with me saying “Oh, we’ve been there. We’ve had that problem,” they are minimizing the extra measure of difficulty I’ve faced as a mother of a child with autism.

It took me forty minutes in a closed room with 100% of my attention to get my son to put on 5 items of clothing. Tell me that you’ve had to do that with your neurotypical five year old.

I know some might think this is an ungrateful thing to say. I only wish that people would stop trying to empathize with something if they don’t really understand it.

I’m not going to just sit there and tell them how wrong they are. That would be horrible. I just want other moms to understand that what I deal with is NOT the same as what most other moms deal with. What is baseline normal for moms of kids with autism is not the same as what is baseline for moms of neurotypical kids.

So yes, this dear lady did endure those toddler years, the high energy, go go go, tantrum-for-no-real-reason years.

But the days I have are not the same ones she remembers.

On Staring

This was written as a cathartic exercise last year. Toby has made major improvements and no longer has these behaviors on a regular basis. I wrote this to get some of the weight off my shoulders, and I thought I’d share it now.

Dear Stranger,

I know my child is screaming. I know he’s kicking, hitting, scratching, biting me and practically ripping my shirt. I know it looks strange, that I keep pushing my cart, despite the noise and the little boy pushing my cart from the other end, trying to prevent me from finishing my shopping trip.

To the stranger who is judging me or my child: I don’t care.

You most likely don’t know that he doesn’t need more discipline. Or a good spanking. Or that he isn’t stupid, or a bad kid.

Autism doesn’t usually cross your mind, I think.

So how could you know that what he needs are not punishments, but skills? That he needs to know how to go the grocery store and, (despite the sensory assault of smells, lights, voices and all sorts of unfamiliar things), get the job done?

Here’s the thing: I don’t know your story, and you don’t know mine.

I just wish I could tell everyone who watched my child acting this way, that even though the little boy you see is drifting into uncontrollable confusion and anger, he is still the sweetest, smartest, most loving and special boy in the world. He is my world.

I like to think that if I could personally take each person who stares aside and explain to them the whole story, starting at the first sign something was wrong with my darling, chubby-cheeked little boy, and going until we get to our commitment of helping him fulfill his absolute maximum potential, the unflinching glare would surely melt away and the judgement would flee and we would part ways with an understanding that the scene he is making is a necessary part of that goal.

That may not be true, yet I have to believe it is.

And to the stranger who lovingly looks at me and sends me a smile of encouragement: Thank you. I can’t tell you how much your positive energy boosts me.

And to the kind, well-meaning stranger who asks him “What’s wrong?”: Thank you. No, you’re not really helping. Yes, you might set him off even more. And you might even force me to make you feel uncomfortable by telling you about his disability. But thanks for caring that something is wrong.

Thanks for noticing he’s having a tough day, and that yes, I am too.

Sincerely, (truly)

A mother of a child with autism