How Facebook Made Me Realize I’m Not A Superhero

A few years ago, my husband bought a tee shirt that read “May your life someday be as awesome as you pretend it is on Facebook!” We laughed, and laughed.

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Just about anyone with an active social media account can relate to that phrase, because we all have one or two friends whose posts seem out of touch with their actual lives. I still see the humor in the statement on that shirt, but lately, the truth behind those words really resonates in me.

Since joining the special needs community, my social network has grown exponentially. In an effort to find education and support following my daughter’s autism diagnosis, I have become an active member of several virtual communities. Where, before, I primarily used Facebook as a means to exchange casual updates with family and friends, now, I find that I utilize most of my time online engaging with other parents of children with special needs. These exchanges via social networking were what inspired me to share my journey through my blog.

I have committed myself to being very candid about the experiences I share. I’m open in sharing about the struggles my family has faced; I even named my blog ‘Driving the Struggle Bus’. However, there is underlying positivity in nearly everything I write. I use my voice to show others how each challenge has been an opportunity to learn more about myself, and a chance to find strengths I never realized I possessed. While my experiences are unique, my point of view is not. Most of the other parents I’ve connected with in special needs communities utilize social networking the same way-to encourage one another and build each other up.

Sometimes, though, we build each other up to a fault. When members of our communities express self-doubt, we rally together to remind them of the countless ways their struggles have made them stronger. While such vehement support is desperately needed at times, it can cause us to embrace a sort of “superhero” identity. When fifty people regularly remind us that “we’ve got this,” we tend to believe them.

The problem is, we’re not superheroes. We’re parents, and all parents, while they have children with special needs or not, are human. Sometimes we don’t “have this.” Sometime’s it’s all we can do to clean up and get our children to bed before we break down and cry. We spend so much time telling one another to “soldier on” that we start to forget that it’s perfectly acceptable to break down.

The other day, scrolling through my regular news feed on Facebook, I broke down. I dropped the façade of the superhero mother who is completely at peace with her child’s autism, and realized I was human.

All it took to bring me back to reality was a simple post, another mom describing, in detail how articulate her daughter (who is the same age as mine) is. I became angry and judgmental- the very things I have consciously tried to overcome. I said to myself “All she ever does is brag about her perfect life, and how advanced her daughter is!” I unfollowed her, because I couldn’t bear to see any more.  I texted a mutual friend, who commiserated with me. It’s what I needed, at that moment. I needed to realize that even though my daughter is amazing and I accept that she has delays,, sometimes it’s going to hurt like hell to see that other children her age function on a whole different level.

Once the moment had passed, I reflected about the raw emotion that post brought out in me. The mom who shared it isn’t one of my closest friends and I don’t see her regularly. It was easy for me to use her as a scapegoat. Was it fair of me to do so? Absolutely not. I recognized that, while the majority of her posts are centered around her daughter’s accomplishments, her intention was not to brag. She was proud, just like I am of my daughter’s achievements, which I frequently share.  It’s all about perception. 

What I gained from this experience was simple insight. Facebook is merely a highlight reel of one’s actual life, and should be viewed as such. In failing to remember this, we are approaching it defensively and inviting others to offend us. A person is no more at fault for sharing her daughter’s accomplishments than I am for blogging about my struggles.

What You Don’t See When I’m on My Phone Around My Children

 

 

There is so much talk, anymore, about parents and their overuse of smartphones while in the presence of their children. If I took the time to scroll through a day or two on my Facebook feed, it wouldn’t take long to find that one of my “mom friends” shared a piece like this one, titled “Dear Mom on the iPhone: Let me tell you what you don’t see.”

Now, I’m not for a second saying I’m perfect. I’ll be the first to admit I’m far from it! My phone is more of an appendage these days than it is a device. I am a mother of three young children. I work full-time. A significant portion of my non-working hours are spent facilitating the care of my youngest child, who has special needs. I write, and when an idea inspires me, I pick up my phone and transfer the idea to something concrete. Otherwise, amidst the shuffle of daily life, these moments that become the stories I share will be lost on me.

So, while you might look at me in those moments and think to yourself that I had ought to put my phone down and attend to my children, I would like to tell you what you don’t see.

The photos above were taken early on a Sunday morning on a weekend trip to the beach. This was on a “date”, to which I was invited by my six-year-old son. He has earned the nickname “Rooster” because no matter how late we keep him up, he awakens with the sunrise, ready to take on the day. On this particular morning, we set out early to walk the shoreline and collect shells. These particular photos were taken just moments before my phone slipped out of the pocket of my sweatshirt and into the ocean water.

That Sunday morning, I lamented the loss of that phone, but it wasn’t because it meant I’d be disconnected from the world around me. I was saddened, because the loss of that device meant the loss of a weekend’s worth of family photographs. In particular, I was upset about the loss of the simple photos above.

What you didn’t see when you saw me pull out my phone on the beach was Cameron, asking me on that date, with sincerity in his big blue eyes, pleading for some time alone with his Mommy. You didn’t see the afternoon trip to the aquarium the day before, cut short by  the meltdown of his little sister, who has autism. You didn’t see that we almost didn’t make it into the aquarium at all, or his frustration as I couldn’t stop to talk about the sharks, which are his favorite. You didn’t see a little boy who tells me a lot, lately, that we don’t get to spend enough time together. You didn’t see him at my bedside that morning, as he took my hand in his and led me to the door.

I take photos of my children, and in moments when they seem to feel less than special, I pull them out and we retell the stories within them. I use them as a tool to help them remember the details of those moments. These stories stop time, and make them realize that while they don’t always get enough of me, the moments I do get with them are dear to my heart.

Our date to collect shells didn’t end when my phone slipped beneath the waves. In fact, we walked for over an hour, his hand in mine, inspecting and discussing all that had washed ashore after the storm the night before. I may have my phone in hand more than you deem necessary, but I don’t rely on it as I enjoy the company of my child. Just being with him is enough.

If you see me out with my children and I pull my phone out of my pocket, I’m more than likely just making an effort to capture a precious moment. Spare your judgement in those situations. If you choose to judge, anyway, ask yourself this – How many of you are reading this on your phone, right now, in the presence of your children?

Today, that phone came back to life long enough for me to upload those memories.  Tomorrow morning, I will show my son these pictures and spend a few minutes remembering. He will start off his day with a little extra love in his heart, because of what that device afforded me to do on that walk alone on the beach. As the days turn into months, then years, I will get asked out on far less dates. If using my phone in the presence of my children means that I can keep them little a bit longer in my heart, perhaps I’m not the negligent mother you saw at first glance. Perhaps before you choose to judge me, you should realize that you don’t know me, at all.

Why It’s Okay to Make Mountains Out Of Molehills

Today, like every Monday and Tuesday, I picked Piper up from school to take her to therapy. I’ve grown to love this routine for many reasons. I love the one-on-one time we share in the car. I love how proud she is when she finishes each session with Kate, her speech therapist. More than anything, I cherish the look of elation on her face when she spots me walking toward her. She hugs me with every ounce of love inside of her, and leaves her friends and teachers with a smile, an emphatic wave, and a heartfelt “Goodbye!” She brings light and pure, innocent happiness whenever she goes.

 

Today, though, something just felt “off” as soon as I laid eyes on her. Almost immediately, guilt set in. A rainstorm had slowed my drive. I was five minutes behind, and instead of sitting in her normal spot by the front entrance, she was with her teacher, loading her friends into the vehicle that takes them home. Her teacher reported that she’d had another fantastic day, but I could see she was hurting. I assumed that by being a few minutes late, I had thrown off her routine and had been the cause of her melancholy spirit. She didn’t say goodbye to anyone. She clung to me, and stared over my shoulder at the school.

As I carried her towards the car, she let out a whimper that I’d never heard before. I stopped walking, and attempted to meet her gaze. “I’m sorry, sweetheart,” I said. “Are you sad because you didn’t get to ride home with her friends?”

Her eyes were still fixed on the school. “No. I don’t want that.”

With a heavy heart, I buckled her into her seat. It was when I fastened the last clip that I saw large tears rolling down her cheeks. My sweet child was crying, silently. She looked completely heartbroken. I tried to hide my own heartbreak and once again asked her what was bothering her. Because she still struggles to consistently carry on conversation, her direct response stopped me in my tracks.

“I want my MiMi, and I can’t get her!” (MiMi is her baby blanket- her security.)

Not fully expecting her to further respond, I asked if she had left MiMi in the car, with her friends.

“No, Mommy. In Rachel’s room .”

Relief washed over me. I quickly unbuckled her and reassured her. “Come on, P. We’ll go get her.”

We didn’t even reach the door before her teacher rushed up to us and offered her apology for not packing the blanket in her backpack. Another teacher overheard our conversation and offered an apology of her own. She explained to me that Piper had tried to tell her she needed to take MiMi home, she had mistakenly thought it was just a blanket for rest time, and had denied her request.

“She really did try to tell me, over and over. She’s a smart little girl. I’m sorry, Piper.” Her apology was heartfelt.

With that. MiMi was returned. Piper relaxed and offered up the goodbyes she had withheld just moments earlier. Just like that, my child’s sweet demeanor returned. I got her situated in the car one last time and we set off to therapy.

It was while I waited in the therapist’s office, or ‘Kate’s house,’ as Piper would say,  that I had my “Ah-ha” moment.

To many moms, the above exchange might have been received in a whole different way. Instead of feeling guilt over throwing off my child’s schedule, I might have been annoyed that my own timeline had been interrupted. I say this not to pass judgement; I say it, because I’ve been that mom in the same type of situation with my older children. In my head, I might have said to myself “Are you kidding me? We’re running late to begin with, and now we have to go all the way back into the school for a blanket!”

Not this time, though. This time, as I sat there, the significance about what had unfolded at school that afternoon washed over me. That small exchange left me in complete awe of my little girl and all she has accomplished.

Six months ago, a moment like that would have been a complete disaster, because six months ago, my daughter could barely communicate basic needs. She would have felt lost and scared without MiMi, and would have had no way to let me know. I wouldn’t have realized MiMi wasn’t in her bag. The further away we got from school, the more terror she would have felt. Undoubtedly, it would have quickly turned into a full-on meltdown.

Not long ago, Piper could barely find the words to tell me she was thirsty. Today, we made a true connection, She was able to show me that she was upset, and using the words that were trapped inside of her head for so long, she clearly and concisely communicated to me what the problem was. Even more, she had communicated it to her teacher! I’m sure that I can’t even begin to imagine the relief she must have felt.

It’s amazing how empowering an exchange like the one we had today can be! It’s something truly worth celebrating. She’s had to work incredibly hard, hours on end, just to get to this point, and I’m not ashamed to tell the world how proud I am.

When you have a child with autism, like Piper, these are the exact victories that demand to be celebrated! In failing to do so, we would be failing to recognize the hard work and sheer determination of our children. If we didn’t celebrate these breakthroughs, we would be failing to recognize the therapists who dedicate their lives to helping our children find their voices, and in turn, change our lives, as well.

There is no shame in making mountains out of molehills. In doing so, we are showing our gratitude and building the confidence of our children, who will undoubtedly move those mountains, someday.

A Child Doesn’t Need Words to Say “I Love You”

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(This post was originally featured on The Huffington Post)

Another Mother’s Day has come and gone. My children have long-since drifted off to sleep, and I’m quietly reflecting on the many ways they brought joy to me today. Some of this joy was the result of intentional acts of kindness, including a beautiful bracelet made by my oldest daughter, and a heartwarming “All About Mom” book, filled in by my kindergarten-aged son.

These were gifts that my children made in advance and gave to me with great anticipation. They knew it was to be a special day for me. From the moment their feet hit the floor, they were active participants on a mission to make Mom feel extra-loved! Their mission was a great success, and I took every opportunity I had to let them know it.

My youngest daughter, on the other hand, has no clue what Mother’s Day is, or that it even exists. She’s three years old, and on the autism spectrum. To her, today was just another day. Still, she, too, managed to make me feel loved beyond measure.

There are so many ways in which every child on the autism spectrum, verbal or non-verbal, is capable of saying “I love you.” What they need is for us to realize that we can listen with more than just our ears!

Many moms of other children with autism have opened up to me and have shared their stories. I’ve heard the heartbreak in their words as they have described how it feels to know they may never hear the voices of their non-verbal children. It’s humbling, to say the least. I’m incredibly fortunate that my little girl is able to speak. I have heard her little voice say “Goodnight! I love you!” From mothers who don’t have that luxury, I have learned that children with autism express love in a multitude of ways, often without ever uttering a word.

When a child with autism has a great day, socially, yet breaks down the moment she is in the safety of her own home, she is saying “I love you enough to let you see this. I feel safe with you.”

When that same child clings to you and sobs over the most seemingly trivial change in routine, she recognizes security in you. She isn’t just being difficult or finicky. She is saying “I love you, and I’m not letting go, because right now, you’re the only one who I know can make it better.”

When a child with autism smacks you in the face as you pretend to cry during play, he isn’t being cruel. He is expressing distress over seeing you distraught. He is saying “I love you, and I can’t stand to see you sad, Mommy.”

Yes, my daughter can speak, but she also does each of the things mentioned above. Instead of being hurt by her behavior, I’ve learned that I need to look beyond the surface and listen to what she’s telling me with her actions. They’re all rooted in love. This is not always easy to do. I’m far from perfect and often become frustrated during these outbursts, but I am learning to hear the things she’s not saying in times like these.

My daughter speaks, but she’s not yet able to understand the significance of days like today. Sure, she takes cues from her older siblings and repeats the phrase “Happy Mother’s Day.” She is intelligent, and knows that these words get a positive response, but she has no idea what they mean.

Tonight, her actions said “I love you” incrementally louder than any words she’s ever spoken.

I put a different spin on Mother’s Day, this year. Since my children are what make me me “Mommy,” I gave each of them a gift- a small wooden photo of them with me. At bedtime, I found my youngest daughter in her bed, snuggling with hers.

In so many situations, you can feel an overwhelming expression of love without having to hear it expressed verbally. There is no greater feeling than looking at my little girl and knowing that I am loved and adored, just for being me.

 

Faith and the Waiting Room

Today, the Struggle Bus is taking a detour and stopping at a new and (thankfully) foreign place. I bring this update to you from a hospital’s surgical waiting room.

Just a few minutes ago, I kissed my husband goodbye and watched two nurses wheel him back to the operating room. I should see him in about three hours’ time. At 34 years old, this is his first surgery. In an effort to keep the mood light, I teased him as we waited in the holding area- when we do something in this family, we do it with style! It couldn’t have been his tonsils, or even his gallbladder…he had to go all out and go for the spine! Years of being rough on his body as a teenager through athletics and other crazy adventures have caught up to him, and without getting technical, a disc or two in his spine have caused him around-the-clock pain for the past several weeks. He has a phenomenal surgeon, and the surgery, a Microdiscectomy, is certainly not the worst thing he could be facing. Still, I’d rather be pretty much anywhere else right now and I’m sure he’d concur!

At 34 years old myself, I’ve never been in this position. I’ve never been alone in a surgical waiting room. David’s case has been given a number, which it appears on an LCD screen now and again. The number is color-coded to correspond with the progress of his surgery. At the moment, this number on a screen is the only real connection I have to the man I love.

A minute or two ago, a page came across, and I abruptly stopped twirling his wedding ring around my thumb.

“Will a member of the Smith family please approach the desk for consultation?”

I felt my heart speed up instantaneously. He’d only been back there for fifteen minutes! What could have happened already? I approached the desk, and the woman behind it simply stated “The surgeon just wanted to let you know he’s begun operating, and everything is going fine.” I stood in silence, very awkward silence, until she said to me “That’s all, honey. You can go back to what you were doing”.

What I was doing was just non-productive worrying. I decided putting my thoughts into words would be better than continuing to count the minutes he’s been back there.

I looked around me as I walked back to my seat in the corner, and observed people in what appeared to be a variety of different emotional states. Some are sleeping. Some are staring at the LCD screen. Others, like me are on their laptops, probably making a similar effort to escape from the reality at hand. One thing we all have in common is the momentary look of panic when our names are called. I have my back to the door, because I don’t think I could bear to see anyone get bad news.

Simultaneously, I’m glad I’m alone and wish that I wasn’t. Notoriously a talker, I can honestly say that this is one time where I’d rather not have to make small talk with anyone. However, I know it must be difficult for David’s mom not to be here waiting, as well, so a part of me wishes she was.

I feel strangely calm, at this point. This is out of the norm for me. Anyone close to me can attest to the fact that lack of control over a situation is not my strong point. Perhaps I’m in a better place because the last several months have been a repeat demonstration of unpredictability. Furthermore, perhaps I’m just having faith.

A few years ago, I got this small tattoo on my right wrist:IMG_20160427_140117
When the tattoo artist was about to begin, he asked me if I wanted the writing facing me, or facing outward. Without hesitation, I told him I wanted it to face me. Its message was intended to serve as a reminder to me on days when the struggle seemed overwhelming. Today is such a day.

I’ve been asked many times “What does it stand for?” Or “What does that mean to you? Is it because you work in healthcare?” Yes, part of it is fitting due to the nature of my profession. But the message that resonates in me is as follows: As long as your heart is beating, and you can find it within yourself to have faith, beautiful things lie ahead.

For me, the beauty in this stressful and scary day is the opportunity to see my husband live free of the pain that’s taken over his life as of late.  I’ve probably said before that one of the most heartbreaking feelings is to see someone you love struggle. Over the past few weeks, I’ve watched pain frustrate and exhaust him. He’s never complained; it’s just not his nature. But his quality of life is going to improve incrementally after this surgery.

For the next few hours, I know I’ll continue to be nervous. I want nothing more than to see him again right now.  I know this is for the best and I will continue to have faith. For the record, I don’t think “faith” has to have a religious connotation. It can be as simple as just believing in something, some meaning bigger than oneself.

To anyone who has reminded on the Struggle Bus this far into the detour, thank you for affording me the chance to put my nervous energy to use!

Our Daughter’s Diagnosis Changed How I See My Husband

Routine can make a person blind to incredible beauty. It’s something that slowly happens, over time. You can drive the same route to work day after day, but it isn’t until you are in the passenger seat that you notice the old farmhouse hidden just behind the trees. There, stopped at the same very same traffic light for which you normally have very little patience, you are able to take in the true beauty of that old property-the way it sits on the small pond, the character of the tin roof. Being a passenger can afford you the chance to truly take in the vibrance and sights that are otherwise muted by your focus on the destination instead of the journey.

Raising young children with your spouse can have a similar effect. It’s not that you forget that he is wonderful. You’re married to him, after all, and part of marriage is choosing that person again, day after day. But the days become months, and then years. Your children grow, and you settle into a routine. Though it is far more rewarding than your morning commute, it is a routine nonetheless. Together, you master the basics of the parenting thing. Without even realizing it, each of you take on different roles. They become second nature, and you find yourself going through the motions of getting ready for the day, not without care, but more like a well-oiled machine. It just flows.

Until something rocks your world.

For David and I, this was Piper’s autism diagnosis. Piper is our three-year-old firecracker. Born in July and the youngest of our three children, she entered the world full of spunk and joy. Somewhere between the ages of 2 and 3, her bright, contagious laughter dimmed. The words and giggles stopped coming, and tantrums and isolation took their place. Great concern led us to her Pediatrian this past August, and that day set off a chain of events that threw our routine out the window.

For a while, it was terrifying. I felt that while the rest of the world carried on, time for us had come to a screeching halt. I was scared for Piper, and what her future might hold. I was worried about Kaydence and Cameron-riddled with guilt that we were robbing them of quality time because so much of our time was invested in getting their sister the help she desperately needed. I was worried about how this would affect David, and how he might internalize his feelings in such a situation. I was even more worried about the impact our new reality would have on our marriage.

There were some dark days, for sure. Watching your child struggle will inevitably cause a strain on any relationship. Sheer exhaustion broke us down at times and exposed our children to a more stressful environment than we’d have liked. Then, things started to come around. With an incredible support system and remarkable therapists and teachers, Piper started communicating. It was a thing of great beauty to see her light shine back through as the frustration left her body and mind. We certainly put in some hard labor, but the well-oiled machine got a much-needed upgrade to meet the added demands to our routine. With a few hiccups here and there, we worked together and caught onto this parenting thing again.

What happened next was nothing short of incredible.  I deliberately took a step back and became the “passenger” again. I forced myself to actually observe our new routine instead of focusing on where we needed to be next. In doing so, I was given one of the greatest gifts in a decade of marriage; I am now able to see my husband in an entirely different light.

I see a man who has committed every fiber of his being to keeping our family together. It suddenly occurred to me that my heart wasn’t the only one that ached over the past few months. His did, too. Despite that, he has carried on with the calm, steady manner that I always recognized, but never realized was so vital to our relationship. On Piper’s toughest days, I still tend to break down. It is David that reassures me, allows me a reprieve, and steps up to the challenge without fail. I has always been David who gets the children off to school each morning, yet until I sat in that passenger seat and observed his routine, I never considered that he’s used this time all along to learn each of the children inside and out. I see now that this has provided Kaydence and Cameron with the consistency and nurturing they’ve needed to weather this storm with us.

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While I’ve never known David to be anything but a loving father, I now see that learning to be a father to a child with autism has made him so much stronger. I’ve thanked so many people along this journey for their support, but the greatest of thanks is truly owed to my husband, a man who never for a second let us lose our way.

I Never Wanted to Need So Much

Some life lessons are just more difficult to understand than others.

Life’s balance, as I know it, has completely shifted over the past six months. The independent, dependable person I once was seems to be a distant memory-replaced, instead, by what often feels like a scattered shell of my former being. The woman who never turned down a request for help has become someone who feels like she’s constantly asking for the graces of others. Simply stated, the giver has become the taker, and it’s terrifying.

I am fairly new to the community of special-needs parenting. Six months ago, the only “special need” I had was to leave work for a few hours when my son fell off of his new bike and broke his nose! My reality now is stretching FMLA leave to cover Piper’s visits to the developmental pediatrician, the pediatric neurologist, and multiple weekly therapy sessions, just for starters.

Presently, I find myself overwhelmed and anxious over the mere thought of what my daughter’s care means for my personal and professional life, alike. There’s a lesson in here somewhere, and I feel like the only way to find it is to reach out and ask those in my professional life to consider ME, the  person hidden behind all of the requests.

I ask you, please, to understand how scary all of this is for me. We’ve only known each other a little over a year, and that makes all of this so much harder! You barely got a chance to know me professionally before my life became so demanding, so I’ll explain the best way I know how. I was YOU. I was ever present, driven, and reliable. I was the person who filled in without question when “life happened” to someone on my team.

With the exception of needing regular time off to coordinate my daughter’s care, I am still those things. Because of my needs, I feel like my performance is frequently overshadowed by my need for accommodation. I give all I have each day I work beside you, yet my sense of personal responsibility causes me to feel like a liability. Unless you have walked this path, you cannot understand how indescribably heart wrenching that feeling is.

I want you to know, also, that I see YOU. Honestly speaking,  that is what makes this reality hardest of all. I see how it affects you when I leave you short-handed. Not only do I see you, I care about you. I am mature enough to realize you don’t harbor resentment towards me, personally. Still, I internalize your frustration in this situation, and I feel tremendous guilt over the fact that my needs regularly come at your expense. If I didn’t value you as much as I do, this wouldn’t be so hard.

I ask you to understand that besides being a special-needs parent, I’m human, just like you. There will be times where I will be sick, need surgery or lose a loved one. Like you, I will need occasional time off to take care of my own needs. Please fight the immediate instinct to be annoyed by this, due to the fact that I already ask for so much. I never wanted to be needy. I wouldn’t change a thing about my daughter, but the gravity of the situation regularly sits heavily on my shoulders.

Lastly, I wish for you to understand how much I appreciate your continued support. No one but me is responsible for the feelings I’ve expressed. Life hasn’t been easy as of late, and though I may seem like an open book, what I share with you often doesn’t scratch the surface. Collectively, you seem to accept that, and continue to embrace me, even with all of the needs I never wished for.

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“I’m Sorry”

It took me a while to be able to say the words “My daughter is autistic”. For a while, even when I said them to myself, they sat like lead on my tongue. When they did come out, it sounded like a stranger’s voice, or an awkward attempt at speaking a foreign language.

It took even longer for me to be able to use those words in everyday conversation. Piper had a diagnosis for months before I even hinted at it on social media. Beyond a small group of friends and immediate family, the information was on a need-to-know basis. This wasn’t because I was ashamed or sad; it was more of a motherly attempt to protect her. What I feared the most was that once those words were out there, people wouldn’t see “Piper” anymore. They’d see autism first.

After a while, I realized that saying those words wouldn’t change how my friends looked at Piper. I realized that if it did, then perhaps friendships would be re-evaluated, and the circle would get a little smaller. When I finally decided to share, I did so casually, and received a warm, genuinely supportive response-the kind you would expect to receive from true friends.

What you can’t predict, however, is the response you’ll get from strangers or acquaintances. The worst of which is simply “I’m sorry”.

“I’m sorry” is something you say to someone when they’ve experienced a loss.  Nothing about my child being autisic is a loss to me. The day she was given her diagnosis, we didn’t lose a “normal” child. To the contrary, we gained so much! We gained affirmation that there was a solid reason for her delays. We gained a plan for treatment and intervention. We gained an incredible support system in the autism community, and most of all, we gained insight and perspective into our child’s beautiful mind.

I won’t be angry with you if you respond with “I’m sorry”, because I realize that the intention is not a negative one.  Most of the time, it’s just a knee-jerk reaction. Perhaps what you were trying to say is that you are sorry that I’m dealing with so much, right now. Please, don’t feel that way. It may be overwhelming at times, but I’m not sorry.

When I am brave enough to say the words “My daughter has autism” and you respond by saying “I’m sorry”, please know that it does make me sad. It hurts me that you might think that I view my daughter’s condition as a burden. It is not. To the contrary, the countless appointments and therapy sessions over the past several months have been a blessing. They have given me extra time to bond with a pretty amazing person!

Don’t be sorry for me, for there is no reason. In this situation, I am sorry for you. I’m sorry that you don’t know her like I do.

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When I Stopped Bracing Myself, and Started Embracing My Child For Who She Is

Little things will break you down if you let them.

Yesterday was a perfect example. It was Easter morning. Excitement was in the air as the children woke up to find that the Easter Bunny had stopped by while they slept!  True to tradition, empty baskets were set outside of each child’s bedroom door. Next to each was a single, candy-filled egg, strategically placed to let them know that an egg-hunt awaited them downstairs.

I awakened to choruses of “The bunny came!!” and “Look! We got baskets and eggs!” from my older two. Piper, however, was less than thrilled. She sat at the top of the stairs and cried. “No! No! I want my purple basket!” The bunny had slipped up and left a pink one in its place. 

My drowsiness lifted, and I immediately shifted into crisis-aversion mode. How could I have forgotten that last year, she held onto a purple, plastic bucket as she collected Easter eggs? My husband and I led them downstairs, and though I swiftly replaced her pink basket with the purple bucket, with that one small change (an entire year later), the damage was already done. She threw the bucket with disgust and sat on the floor with all  the makings of an impending meltdown.

There we were in the kitchen, eggs everywhere, just waiting to be scooped up. But I could feel the fun-filled event I had pictured in my head the night before  quickly turning into tension for everyone.

“Why do your always have to make so many RULES because of her?” one of my older two protested, because I asked them to wait until she calmed down.

At that moment, my gaze met Dave’s, and we turned them loose to hunt their eggs. With no words necessary, we had both realized that collectively standing there waiting for her, bracing ourselves for the meltdown was not going to accomplish anything.

The funny thing is, once we stopped bracing ourselves for the “inevitable” and relinquished control of the situation as a whole, Piper stood up and walked over to some eggs that had been left in her Minnie Mouse slippers. The meltdown never happened. Sure, she became preoccupied with those two eggs and stopped “hunting”, but she was happy. All of the kids were happy. It might not have played out exactly how I imagined it would, but it was good enough and we embraced it.

Though that experience was but a drop in the bucket of parenting a small child with Autism, a valuable lesson was hidden in those few moments. I learned that finding our way through each day is a lot more bearable and positive when we stop bracing ourselves for the fallout and start embracing Piper for who she is and how she views the world and on a smaller scale, each experience.

Certainly, it can be a lot more difficult to parent her at times in comparison to our experiences with Kaydie and Cam. However, by embracing her exactly the way she is, I’m able to reflect on many ways her Autism makes it EASIER to parent her at other times! Particularly, reflecting on yesterday- Piper being who she is made the whole day easier.

Hyperfocus is often a point of frustration in Autism parenting, because a child becomes so involved in an activity, it can be extremely difficult to transition her to another activity. Yesterday, instead of seeing it as a negative, I embraced the heck out of it! Given three crayons and a $1 coloring book, Piper was the quietest, most well behaved child in church.

Embracing moments of immense pride in what might seem like everyday situations to others is another example. I know everyone in the family was holding their breath when Piper followed her sister to the front of the church for the Childrens’ Moment. She’d never done that before. No one knew if she’d wander or freak out. But she sat there with her sister, in front of the entire congregation, and when it was done, returned to her seat just like everyone else. Embracing her progress and growth enabled us to witness her shine in a totally unfamiliar social situation. To everyone watching, she was just like all of the other kids. To me, that was the most amazing thing I felt all day.

Embracing her happy nature and love of music allowed us to enjoy her dancing innocently in the aisle as we slowly filed out of the service.

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Embracing her patience allowed us to enjoy brunch at a fancy restaurant. Even though the service was slow, at best, not once did she complain and leave her seat.

The routine that is so necessary to maintain sanity also paid off big-time, as she went down for a nap shortly after 2PM, because that’s what she does every single day in Pre-K. It afforded me the joy of an uninterrupted hour of play time with Cam, a connection which he desperately needed from Mommy.

There are so many moments in our journey when I get frustrated and lament “This is not how it’s supposed to be.” Reflecting on yesterday has opened my eyes, literally, as Piper’s mom. What she needs from me when she begins to struggle is not for me to brace for the next blow. She needs me to get on her level and try my hardest to see the world as she sees it at that moment. In doing so, I am embracing her being.

Sure, yesterday started with a struggle. But it ended with a smile, many laughs, and a promise for more joy, today.

 

 

 

 

 

 

 

 

Happy “Clover Day”

I’ve been talking about puppies a lot, lately. Not that we’re ready to get one, but the idea of picking one out together as a family in the future has brought the topic to the table a few times. The kids have enjoyed talking about puppies, and what breed they might like to have.

The other night, as I snuggled in bed with Cameron, we were enjoying our regular night-time banter. (Bed time always brings out the best conversations!) As my little buddy’s ever-churning mind slowed down for sleep, he blurted out “Mommy, can we get a puppy after Clover Day? A Dalmatian? Can I name him?”

So many things about that made me giggle! It reminded me that to kids, once you put an idea into words , it becomes a contract. While to me, a the idea of a new puppy is a hazy dream for the future, to him, it’s important enough to be the last thing he thinks of before he goes to sleep. 

And then… “Clover Day”! It took me a few moments to figure out that he was referring to St. Patrick’s Day. You see, he just turned six. He’s learning to read, and part of that process for him is using pictures for context. This week, all of the seven-day weather forecasts have included a shamrock, or clover, for March 17th. And so, in our home,  because of the sheer innocence of Cameron’s sweet mind, good old St. Patrick’s day has become known as “Clover Day”.

Kid-isms are one of my favorite parts of being a parent! They are a sweet and simple reminder of a child’s mind. To those of us who have mastered the better part of the English language, as part of everyday conversation, we label items, or in this case holidays, without even giving them a second thought. Perhaps you have to be a parent to truly appreciate these little moments, but these kid-isms remind us that even at six, a child’s brain works so differently. There’s something sweet and refreshing about the way they innocently re-name or mispronounce words and phrases that are commonplace to adults. Perhaps I’m soft of heart, but I cherish these priceless little quirks, because they bring me back to the level of the child’s mind, and allow me to see everyday things the way I think I must have many years ago!

Over the years, a few of my favorites have been “baby soup” instead of “bathing suit” (all of our children used this one!), “popsickocle” instead of “popsicle”,  “Minnie house” instead of “Minnie Mouse”,  “Dizzy World” instead of “Disney World” , “Grail” instead of “Girl” and “Cup-up-older” instead of “cup holder”. Kaydence also had a very cute way of saying “ornament” that I cannot photenitcally describe, but will never forget and will always hold dear in my heart.

I know that Cam’s little kid-isms are growing fewer and farther between as he grows. Perhaps this is why I still can’t bring myself to correct him when he occasionally says things like “Look at him’s shoes!” Secretly, they make me smile. They remind me that even though he’s getting bigger by the minute, in the grand picture of life, he’s still a baby, my baby, and something about that just warms my heart.

I know this is probably the one and only year he’ll sincerely believe that today was “Clover Day”, but the name will live on with our family, because with it will always be the memory of Cameron’s sweet innocence at age six.

So, from my little buddy to all of you, I hope this was your happiest Clover Day so far!

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