A Chip on My Shoulder

Me and mom

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.

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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

The Beginning: Part 2

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Part 1 is here.

We had parent teacher conferences and things came up- “He can’t use a pincer grasp,” and “He’s always picking up tiny things off the floor,” and “He really likes to make this noise…”

One day, one of Toby’s teachers was sick, so a teacher from another class filled in. This teacher also “happened” to be a former speech therapist. (I say “happened” because I truly believe this was divinely orchestrated.)

She came up to me when I went to pick Toby up from school. She gently told me that she thought there might be more wrong than just a speech delay—she had a feeling something else was wrong, and whatever that was, caused the speech delay.

My heart sank. Suddenly all of those quirks Toby had seemed like symptoms of….something. Autism was never on my radar. I began to prepare myself for a diagnosis of a garden variety developmental delay, and made another appointment with a different pediatrician.

I sat there in the examination room with my husband and Toby. Elinor was with a relative. I watched the doctor give Toby various little tests to do and felt sicker and sicker as I saw him fail most of them. Finally, she came to the conclusion that he needed to see a specialist. She wasn’t comfortable diagnosing him herself.

I begged her for reassurance that he would be OK with just a little extra help to get him back on track (a thought I had used to comfort myself in my turmoil). She stopped, not sure what to say, and couldn’t meet my eye.

Then I knew she couldn’t give me that peace.

The weeks between that appointment and the appointment with the specialist were hellish. I alternated between denial of the doctor’s assessment and despair that he was intellectually disabled and would end up in a nursing home.

Thankfully, our doctor was kind enough to put a rush on our appointment. We were seen just a few weeks from our referral, which is unheard of with the practice we were going to.

My sister had agreed to watch Elinor in the waiting room while my husband and I took Toby to his appointment. Sitting down next to her, I whispered that that our pediatrician had briefly mentioned autism at our last appointment, thinking it was so far-fetched but at the same time shaking at the possibility. She wasn’t sure what to say. I wasn’t sure what I wanted her to say.

We were finally taken back to a room where we were grilled by a doctor about Toby. They asked us question after question and we tried to answer them as best we could. At one point the doctor asked me, “What makes you think he is intelligent?” A question I had never even asked myself.

“I don’t know,”  I said, “I just know he is.”

By the end of the visit, Toby had a diagnosis of mild-moderate autism. I was in complete and utter shock. We were given the famous (infamous?) 100 days packet and sent home with more appointments to follow up with later. I couldn’t bring myself to read more than a page or two.

At first, I was OK. I was sad but relieved. Finally we had a reason and a purpose. A goal.

I wore red lipstick for the first time and told myself I’d better get used to not caring what people thought about me or my son.

Eventually, I read the 100 days packet. All of it.

I finally broke down. I realized that our life would never be the same. All the information in the world couldn’t change the fact that Toby was different–and would be for the rest of his life. All the therapy in the world wouldn’t change the way his mind worked.

I was a wreck for a long time. I took on so much guilt and blame for not seeing it sooner. Toby was barely four years old when he was diagnosed. When I learned that the crucial window for autism intervention was before the age of four, I couldn’t let it go.

I obsessively went over our old pictures and videos, scouring it for what I now knew to be signs of autism. Hand flapping when he was a toddler. Dancing on tiptoes whenever he was excited. Playing with only the eyes or nose of Mr. Potato head while humming nonstop, and never putting the pieces all together.

And not a single video of him babbling.

I began to feel hungry for more information. I started reading everything I could find. I started analyzing everything Toby did. Not just him, either. I also studied every child I ever saw at the park, church or school.

Looking back, I see now that I was just hoping that I wasn’t the only mom to ever think their child was perfectly fine only to be shocked with an autism diagnosis.

I began to feel anxious all the time. I couldn’t rest. I couldn’t decide what I was supposed to do with all the facts swimming around my head, making my life a whirlpool of confusion.

Completely and utterly overwhelmed, I lost my ability to function in my life. One day, my husband came into the room when I was once again fact searching. I sputtered something about not being sure if Toby was orally hyposensitive or hypersensitive. He gently took the book out of my hand. Though I never would have put it down myself, once it was taken from me–I was glad it was gone.

I realized I desperately needed a break.

I decided to just take a step back, and eventually, to start over. This time, I went slowly. I went more by what other people could teach me from experience and less by pages and pages of facts, statistics and medical jargon.

When I started to learn this way, I retained a lot more information. Because I was learning piece by piece instead of all at once, I was able to emotionally as well as intellectually process the things I was learning.

The most important thing I learned about autism during this time was that EVERY child with autism is different. Not every single thing I read or hear about autism will apply to my child. The variations of people on the autism spectrum are endless.

This is my story.

Will you share yours?

The Beginning: Part 1

smiley toby 2008

The Beginning

This is how we entered with world of Autism.

My firstborn, my son Toby, was born in 2008. He was a happy, smiley little baby with big dark eyes and curl in the middle of his forehead, Superman style.  My adjustment to motherhood was tough. I was young, and had a solid hit from post-partum depression. My husband was a full-time student and worked as well. Even though he made valiant efforts,  he was unable to help me as much as I needed. Toby was not a good sleeper, and I was beyond exhausted the majority of his first year.

Since he was my first child, I had nothing to compare him to. The early signs of autism were there, but I didn’t see them. I also had a fierce desire not to be one of “those” moms. I promised myself I would not be the kind of mom that  pushes their child to be the first to check off that developmental checklist. I was determined to let him go at his own pace.

I didn’t realize exactly how slow his pace was.

One day, a childhood friend of mine posted a video on her personal blog. It was of her son, the same age as Toby, bouncing in his saucer, babbling up a storm.

“Ba-ba-ba-ba-ba-ba-ba-ba.”

Out of nowhere, an absolute fury overcame me and I was seeing red. I thought, “I can’t believe how pathetic some people are, that they think they need to brag about their child all the time.” My face heated up with anger. “Every child goes at their own pace. This doesn’t mean her kid is any better or smarter than other kids!”

While I was somewhat shocked at how emotional I became over something that was so trivial, I pushed my overreaction to the back of my mind. Toby will babble when he is ready.

Ready.

That was what I constantly told myself, whenever the developmental checklist came up short.

“When he’s ready…”

Once Toby started sleeping better, my depression subsided and we felt confident enough to have another child.  Elinor was born in 2010. Finally, when Toby was two and a half, and still wasn’t talking other than a few words here and there, I decided to take him to the pediatrician.

She told me he was likely just speech delayed (very common in boys), and might (although she doubted it) qualify for speech therapy through our area’s early intervention program.

I took him to be assessed. He failed with flying colors. He was not just speech delayed (a full year behind schedule), he was also testing behind developmentally.

But even then I put on the brakes and reassured myself with thoughts like, “Well, he just doesn’t know how to pull his pants up because I haven’t taught him how…” and “Some of these goals sound a little lofty…”

So we got the speech therapy. And for almost two years I felt sure that he was fine, that he just needed a little extra help. He aged out of the early intervention program, and when it came time to write his IEP [Individual Education Plan, a set of goals done by the school system] I was all too eager to agree with the school system that all he needed was thirty minutes of speech therapy a week.

I was wrong.

I didn’t know.

I had so little faith in myself, I assumed that any of his problems were due to my various failures as a mother. I thought I had done something wrong, that the reason he couldn’t transition from activities was because I wasn’t stern enough with him. The reason he wouldn’t hold still for diaper changes was because he was naughty or wild or stubborn.

And I continued to heap those feelings onto myself for a long time. I was so weighed down and so frustrated.

I began to feel like I’d never be the successful, happy mother I once thought I could be.

In my desperation, I turned to a church leader for help. He saw my depression had returned and was keeping me down, and tenderly suggested that I put Toby in preschool for a few days a week so that I could have a break from the constant stress.

For some reason I had the misguided notion that if I put my three year old in preschool, I was not a good mother. I had wanted to keep him home with me until he was ready for a real pre-kindergarten classroom. But the idea of 9 hours of relief a week was too good to pass up and I enrolled him in a three day a week preschool at a nearby church. Looking back, I realize that a good mother isn’t all self-sacrificing to the point of running herself down; she recognizes her limits and makes changes accordingly.

The break was all too welcome, but sending Toby to that preschool was the decision that finally put us on the path to those answers we needed.

To be continued…

Introductions

001Who I am:

I am a mother to two beautiful children-Toby and Elinor Toby is six years old and was diagnosed with autism spectrum disorder in 2012. Elinor is four and neurotypical. I am a part time student, writer and mom!

I felt like I needed an outlet, so I created this blog. If anyone can commiserate, be validated, or feel hope by reading my experiences; that’s all the better.