heartbreak, triumph, and bird wings

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I am a mom. I am a lot of other things; wife, daughter, sister, friend, writer, music lover, student, teacher, and that lady that works at the cell phone store. But my most important identity is that of mother. I don’t know if that became true the moment both of my beautiful boys were born or sometime later in their lives, but as soon as my first son came into the world, being a mom became my favorite thing.

As any mother can attest to, I spent the first few years living with a small amount of fear; fear that any decision I made could somehow adversely affect the character of my child. But then I noticed the difference in the development of my youngest son Patrick from other kids. And he was diagnosed with autism, and I had so much more to worry about. We were told he had severe expressive and receptive delays in speech and communication.

Suddenly, I felt like a big clumsy child entrusted with the care of a delicate baby bird. It was my job to protect and nurture that bird until its wings were strong enough to fly on its own. But I was a big, clumsy child with big, clumsy hands capable of crushing that bird if I held on too tight.

Denial became my companion; I gripped its hand tight and carried it with me for months. I bought books for research and typed “autism” in my Google search bar, but I stared blankly at the words, refusing to believe. Then I realized how selfish I was being. I had other people that were also trying to maneuver through the diagnosis and I wasn’t supporting them as they were supporting me. Patrick never wavered. He was unfazed by any diagnosis; he was the exact same sweet child that he was before that day in November.

When you have a child with special needs, you feel like you must be a warrior and an advocate. You want understanding and acceptance, and realize that for many, you are the example of autism. I have to make daily decisions regarding the education and medical care of your child. I attend IEP meetings, therapy sessions, and appointments with specialists. I know the benefits of weighted vests, the sign for “more,” and the meaning of the phrase, “I get flappy when I’m happy.” I cringe whenever I hear someone flippantly use the word “retarded.” (That’s a completely separate topic, so I won’t even go there) I field random emails or texts telling you about some fascinating book or article someone has just read. I also know to take every one of those articles with a grain of salt; because there is still no definitive cause or cure for the disability my child lives with. Autism colors all my thoughts. I was in Target, following behind a teenager and her mother and noticed how the teenager walked on her tip toes and how her fingers flailed carelessly. I immediately wondered if she had been diagnosed, or if her mother had held onto that denial that I finally was able to let go of.

I straddle the line when in public between disclosing Patrick’s condition and just ignoring the stares. I want to spread awareness, but avoid labeling him. This past summer, I took both kids to a local fair, where both kids wanted to ride the swings. I helped them both and buckled them in and was then ushered behind the gate. Patrick, much to the ride operator’s chagrin, kept slouching in the swing. The operator pulled him up straight and then chastised him for a few seconds while I watched helplessly from outside the gate. Finally, through heated tears, I angrily spit out that he was autistic and didn’t understand what was being asked of him. I was then castigated for several minutes about the safety of my child. I bitterly retorted that if he started to slide, the operator was more than welcome to stop the ride and remove my child, but I wanted him to be able to experience something new. I anxiously watched as the ride started, expecting it to be stopped at any moment. Instead, I saw Patrick holding onto the chains just as he was supposed to, a huge, glorious smile on his face. I only shared that incident with a few people because I hate when people pity me because of Patrick, but it’s the perfect example of what being the mother of a child with autism is like. There a moments of heartbreak and moments of triumph, and sometimes they are only separated by seconds.

The first few years of motherhood, I was hypercritical of my own and everyone else’s parenting skills. But through Patrick, I have learned empathy and compassion. I am cognizant of the fact that I don’t know what other parents are living through. I am now not the person who glares at the mother whose child has a breakdown in the post office. I am also not the mother of a child who turns and stares when such a thing is happening. I am the mother of a child who doesn’t judge others for their actions, beliefs, or appearance. I am the mother who wants to be more like her child.

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It’s hard to write a thoughtful and cohesive story on what it’s like to be the mother of a child with autism, because it is so many different and unrelated things. And my experience is different than anyone else’s because my child is unlike anyone else’s. After my piece was published last year, I had so many people tell me that I was a strong and wonderful mother. The truth is, I’m neither of those things. I sometimes unintentionally neglect my oldest son because I’m so focused on Patrick and his needs. Brady has had to miss out on extracurricular activities because of our concern of how to keep Patrick occupied. He also spends most of his time playing alone at home because Patrick doesn’t share the same interests. We don’t host or attend many play dates because Patrick has no interest in socializing. I hover, especially in public, and I make assumptions about Patrick’s abilities that are many times without merit. Sometimes, the weight of what Patrick may have to face in his life becomes too much for me to bear that I feel like I’m drowning. I sometimes cry when I’m alone.

But, would I take away the autism if I could? I don’t know. Of course, I don’t want my child’s life to be difficult or lacking. I don’t want others to treat him differently or less because of one piece of whom he is. But I also know that I love this version of him so much that I don’t know what that love would be like if he were different. Patrick doesn’t speak, but every person who has the pleasure of knowing him falls in love with him. I don’t know the person Brady would be now if he was the big brother to someone else. He is one of the funniest, most thoughtful, and most creative people I’ve ever known. And if not for Patrick, would I be that mother that criticizes the parenting ability of that exasperated mother in the grocery store whose child cannot be consoled? Would I be the mother who isn’t grateful for all of the even small accomplishments of both of her children because they are sometimes the most important? Would I appreciate the kisses and hugs as much if Patrick hadn’t rejected them for so long? Would I be as grateful for my marriage and my amazing husband if I didn’t know the challenges that we have faced as a couple? Would I look as forward to coming home every night if I weren’t coming home to THIS family?
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Luckily, I won’t ever have to know.

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2 Responses to heartbreak, triumph, and bird wings

  1. Erin April 2, 2014 at 3:35 pm #

    Love this post, Kelly! Your boys are so lucky to have a mama like you. 🙂

  2. Linda Douglas April 3, 2014 at 10:43 am #

    Very nicely written, Kelly. I am proud of you!!!

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