“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.

image

 

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.

IMG_20160327_124432

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!

image.jpeg

 

Music to my ears!

Follow my blog with Bloglovin

Tonight, I wanted to share a sweet little snippet of Piper singing with me as she played tonight.

It’s almost impossible to wrap my head around where she is today compared to six months ago. As I sit here, I can vividly recall a very dark and emotionally raw moment, in which I held my crying child, trying to soothe her at bedtime. In that moment, her little body shook with frustration; her tears spilled onto my  shoulder, seemingly burning me to the core. She was just coming out of her most monumental meltdown, the result of simply being unable to communicate to me that her sippy cup was broken, and she was unable to drink. The problem of the moment had finally been solved, but that night came a realization that hit me like a ton of bricks. As her eyes finally closed for sleep, my eyes were opened to the fact that  Piper had true challenges…challenges I had no clue how to help her overcome on my own.

As she settled into sleep, I said to her, out loud, “Baby, I just want to make it better, and I don’t know how. I am so sorry I can’t fix this for you. There is   nothing I want more than to hear your little voice and to talk to you. But if you can never talk to me with words, sweetheart, I want you to know it’s okay. I could never love you less. I am your Mommy, and I will give everything I have to help you through this, words or no words. I love you exactly how you are. I hope you always know this”.

I would swear that with those words, her little body relaxed, and her whimpering was immediately replaced with soft snores. But for a minute, try to imagine the raw emotion of a mother, resigned to the fact that she might never talk with her child. My heart shattered that night, but that low was what it took me to finally reach out for help.

Fast forward to tonight. She’s singing with me! On the outside, you might see her as distracted…but I encourage you to look again and see what I see- a little girl whose brain has developed so much that she can carry on song, while jumping and playing. To me, it’s nothing short of a miracle.

I made a wish on my darkest of nights…I wished to hear the voice of my little girl… For a way to get through to her. That wish has been granted, and this song, our bedtime song, is one of the greatest gifts I’ve received to date.

Here is the link, for anyone who wants to share in this moment!

Piper Sings the Elephant Song

 

One Week Down, a Lifetime To Go

Do you know how sometimes, even though you know in your heart you are making the right decision, you still lose sleep at night over whether it’s ABSOLUTELY the right decision? One week ago tonight, I was in that very place. That place of limbo between an end point and a new beginning.

I can tell you now, beyond the shadow of a doubt, placement in full-time preschool was 100% the right decision for Piper!

Certainly, David and I know in the long run that this was what she needs,  and that ultimately, Piper will benefit immensely from the new structure and the overall experience. A week ago tonight, the big picture wasn’t what was keeping me up at night. The worries that were causing me to lose sleep were more immediate fears. Would she cry when we left her? Would she feel abandoned? Would she shut down and go off on her own and be lonely? Would she eat? Would she sleep? How horribly cranky would she be when we picked her up each day, having never been in school for more than three hours at a time? Ultimately, I knew we were doing the right thing, but in doing so, we were shaking up the life of an Autistic toddler-a very slippery slope.

Apparently, I didn’t need to lose sleep at all. Piper didn’t ease her way into her first week at her new school. She didn’t even put a toe in the water to test the temperature, first. She approached her new reality by doing one of her very favorite things-a cannonball. She fully submerged herself into the whole thing, and the little person that surfaced at the end of it all was a brighter, smarter, happier version of Piper than I have ever seen!

Each day, we’re provided a detailed sheet that covers everything about her day, from how many times she sat on the potty, if she napped (which she did every day, so I know she felt safe and comfortable), what toys and activities were her favorites, all the way down to how much she had eaten of each part of her lunch. My expressing a desire to know these minute details might seem like overkill to some, but this stage in her life is all about finding what kinds of things work into HER routine. If it works for her at school, we can learn from it and make it work for her at home, too. This kind of feedback is helpful beyond measure. Her teacher and assistants have told us daily, and genuinely,  how much they enjoy her and how thrilled they are to have her as part of the class. Simply stated, we could not feel any better than we do about where she ended up.

The biggest victory of the week was one I learned of Friday afternoon,and is one which moved me to tears. When Piper was observed at her original preschool about a month ago, she was observed to have virtually no social interaction with any of her peers. She had two interactions of less than ten seconds each,and they were with her cousin. This broke my heart, and was a major reason we knew she needed the extra help. On Friday, we learned that in her first week in her new class, Piper has already made connections with two or three little boys, who she plays with regularly and refers to by name. As we were eating our pizza Friday night, I said “I hear you play a lot with a little boy named Matty.” She looked up from her food, smiled, and said “I like him. Matty my friend!” My heart just about exploded with joy.

I know this post is a lot of sunshine and lollipops, but for now that’s okay. We need those sometimes! I’m a realist, as well. I know Piper is going to have some bad days, maybe even rough weeks. To get off to such a beautiful start, though, makes this experience and all of these changes so much less stressful, and so much more positive and exciting.

Our little girl doesn’t even know it yet, but she’s a fighter and a champion. We are so grateful for early intervention, and the opportunity to change her life for the better with the support of family and friends and the guidance of the amazing team of people she has working with and for her.  One week down, a lifetime to go!

 

Turbulence

“Ladies and gentlemen- fasten your seatbelts. The sky may look clear, blue, and beautiful, but the ride is about to get very bumpy.”

If parenting a child with an autism spectrum disorder actually came with directions, the specific instructions above would be referred to daily!  You see, to parent such a child is to understand what it is like to have your heart swell with so much pride over her accomplishments that you feel it might explode, and then have your heart hurt so badly when you see the world melt her down that it practically brings you to your knees…all within an hour’s time. Today was a perfect example of such turbulence.

Piper started her new school program on Monday. Previously, she attended her private  preschool for three half-days a week. As part of her IEP, she is now enrolled in one of our county elementary school’s Pre-K programs, which runs full-time, five days a week. (This means she now attends school for the same hours as her brother and sister, just at a different elementary school). The past two days have been a complete change to her routine, and she has been a champion! When I picked her up today to take her to speech therapy, even her teacher was beaming with pride! She couldn’t get over how well she had taken to the classroom, how quickly she had become involved in activities, and said she’s even seemed to make some new friends already. (She didn’t really interact with any of the other children when observed at her preschool previously, so this is a HUGE accomplishment). The school’s occupational therapist had come to observe her today, and was full of compliments on her abilities, as well. To sum it up, when we left school today, we all looked like this:

image

Then, she had a FANTASTIC speech therapy session. Afterwards, she began playing with a little boy in the hallway as I spoke to her therapist. “Ready, set, GO! Come on little boy! Run Faster!” We both just sat back and watched, hearts full of joy, knowing how far this little girl has come. Piper seemed to feel the elation, too. She pranced out to the car, greeting everyone along the way.

A quick trip to the grocery store on the way home changed everything. Usually, this doesn’t bother her a bit. Perhaps the new schedule with long days, and therapy today on top of it made it all too much for her. Whatever it was, I could literally feel her anxiety as soon as we walked in the door. I really needed a few things, though, so I tried to talk her through it. And wouldn’t you know it- Harris Teeter moved their free cookie display. My one saving grace was nowhere to be found. This was where her little world crumbled. The shoes came off. When the shoes come off, all hell is sure to break loose shortly thereafter. Waffles, almond milk, and orange juice. I made a beeline to the back of the store (of course they couldn’t be by the door), and the screaming started. No matter how many times it happens, you feel like you’re in the spotlight. There is always a kind mother who says she’s been there, and maybe she has. I love that mother, because it takes a kind person to express empathy. I try to be that mother every time I can. (That mother actually approached me at checkout and asked me if I needed her help, so she was of the exceptionally kind variety!) But no matter how many times it happens, there are the people who look at you with disgust. Their looks all but say “How dare you continue to buy breakfast food so that your other children can eat breakfast before school tomorrow instead of removing that screaming, thrashing child immediately?”. They actually look mortified when I comfort Piper, rather than correct her.

Well, I finished my shopping. I made it through checkout. And I found the cookies. They are now located on the way out of the store. As I reached in to grab one for my still-crying child, a woman actually asked me if I was sure I should give in to her after the way she carried on. I’m fairly certain some very unkind words were forming in my mouth, when one of the young men who works there offered to take my groceries to my car. I thanked him, and explained that I didn’t have much, and was in the very first spot. He has accepted that answer from me many times when I’ve been alone, but tonight, he said “I know, but at least I can get them into the car and you can take care of getting your little one buckled in”. This was very true, and I thanked him and accepted his help. As I buckled Piper in, he put my two small bags in the trunk and said “Ma’am, here’s your receipt. But mostly, I just wanted to tell you I’m sorry about that. There is a lot of ignorance, but so many of us see what you are doing, and that you are handling it wonderfully, and the best you can.” I could barely manage a thank you, and thankfully he walked away before the tears started to fall. I sat for five or ten minutes in the backseat with Piper, who relaxed the minute she returned to her car seat, her safe place. We ventured home from there, where she refused her hot dog for supper, and instead, ate most of my shrimp and grits.

Tonight, Dave put her to bed as I dried and straightened Kaydie’s hair. (She donated ten inches last week, and we have to style it the night before now). Then, I went in to kiss Cam goodnight, and he wanted to talk for a while. He asked if we could get a puppy after “Clover Day” (St. Patrick’s Day) and if he could name it. He really wants a Dalmatian. We discussed how this is not the right time, but someday. By the time I got to Piper’s room, I fully expected that she’d be asleep.

Quietly, I opened the door and approached her bed. I leaned in to kiss her sweet cheeks, and was surprised by a big smile and bright eyes. “What are you doing up?” I asked.

“Under-nee the moon!” (Our song.) She was waiting for me to sing with her. “I love you in the morning, and in the afternoon. I love you in the evening, and underneath the moon! Skittamarinky dinky dink, skittamarinky do- I LOVE YOU!” And so my heart swelled with pride once again.

That’s the thing about turbulence. It doesn’t last forever. It shakes you up, sure. It’s unsettling.  But it makes you really appreciate the moments where everything flows smoothly.

If the shoe fits…shine it!

As individuals, we all have some small way that we dress or accessorize so regularly that it becomes a part of our identity. My husband, for example, never goes without an undershirt, even when he’s wearing just a basic tee shirt. I’ve come to lovingly refer to it as his “shell”. Similarly, I’m known for my brightly-colored sneakers. I started wearing them to liven up my mandatory uniform of dark scrubs. My collection grew as I noticed the favorable reaction of the patients I encounter on a daily basis. I work with chronic pain patients, and nearly every one of them starts a conversation about my choice of footwear. Somewhere along the line, I realized that if by being known for wearing crazy shoes, I am able to take their minds off of their pain, even if for just moments at a time, perhaps I’m bringing something good to their day. And so I’ve embraced that identity, and with it, I’ve grown my collection of eclectic footwear (often to my husband’s dismay)!

More recently, though, a seed was planted into my mind. Some recent life-changing and enlightening experiences as they pertain to friendship have grown that seed into a fun little revelation that I’m now ready to share. From the depths of my ever-churning brain, I present to you the many ways I believe friendship is like a pair of shoes!

  • In childhood, your caretaker will pick your shoes out for you until you are deemed old enough to choose for yourself. This selection will be based on their potential for comfort, durability, and overall good fit for your lifestyle. With this guidance, you may be lucky enough to find a few early on that you continue to invest in through the years, without fail, because they are tried and true. You may also “stick it to the man” and end up with a pair of combat boots that, while people just don’t understand, stick with you season after season. You may accumulate a plethora, each one fantastic in a different way. You may also prefer to go barefoot at some stage in your life.
  • You will try on a LOT of different shoes until you find the perfect fit. Some will fit “okay”, but will never leave you feeling just right. Then, there will be shoes that you want so desperately to fit, but they will leave you blistered and sore. The time will come when you finally realize you have to stop forcing what just isn’t a good fit for you.
  • It doesn’t matter who you are, how successful you’ve become, or how much money you’ve got in the bank to go shopping- not even the fanciest, most top-of-the-line shoe is necessarily right for your fit and lifestyle.
  • Are you familiar with the saying about “a reason, a season, or a lifetime”?  Some shoes are appropriate for certain occasions. It’s okay to enjoy them, but wear them sparingly. Moreover, don’t expect them to remain practical once the occasion has come and gone.
  • Other people will wear and love the same shoes that you wear and love, and you have to understand that that’s okay. If they are truly the best fit for you, someone else loving them as well doesn’t make them any less perfect for you. Besides, you can’t wear the same shoes day in and day out. It’s just not healthy for your feet. They need to breathe.
  • On the flip side, sometimes you will loan a pair of shoes to someone, and when you get them back (if you get them back, because sometimes you won’t), they’re just not the same. Maybe there’s a hole somewhere that wasn’t there before. Maybe they’re stretched out into the shape of another foot, and just don’t seem to form back to your feet the way they once did. Say goodbye with grace, my friend. They just weren’t the perfect shoe you always thought they were.
  • Should you have children, you might find that the shoes that seemed so perfect before may make your feet feel cramped and uncomfortable. They just aren’t practical. They’re still ready for you to drop everything and head to the club, and you’re over here like “where are my flip flops? I can’t even bend over and tie sneakers with this screaming baby pulling my hair!” Don’t write those shoes off just yet. Though it doesn’t feel like it, those days of being constantly needed will pass, or at least become less frequent. I have a feeling you will squeeze into those shoes for more than a few more good nights once all the chaos dies down!
  • New shoes always seem shiny, bright, and exciting. However, the stains and frays from the journey become more telling than the out of the box condition.
  • You will always have one or two pair of shoes that feel just right, no matter what the occasion, or how long it has been since you have worn them.
  • Your choice of shoes is a direct reflection of you, and one that people will notice. Be proud of your choice, and all that went into making it.MY LAST TWO THOUGHTS ON THIS MATTER ARE MY MOST PROFOUND!
  • If you don’t take care of your shoes, they will not take care of you. If you treat them like they are cheap and expendable, their lifespan will be short.
  • Most importantly, all shoes aside, you really have to take care of the feet wearing them. After all, they are irreplaceable.