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.
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.
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?
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.