One Second

Dear Addie,

While we've been making great strides recently, I promised to be truthful in telling you any and everything about our journey, even if that means the risk of negative judgment thrown my way because of my parenting skills. I hope in my heart that people won’t be quick to judge, because it's super easy to think how you would handle a situation until actually being faced with it, so here it is...

I turned away for what seemed like a second. And you were gone. While scenes like this have played out in my dreams (nightmares), this was no dream. This was for real.

One second before, you were on the deck - sitting happily drinking your gatorade, and laughing with your infectious giggle. Then, gone. No where in sight. I asked Clara and Gabe if you went upstairs - hoping and praying, but their answer of ”I'm not sure” somehow left a sickening feeling in my stomach. I just knew.

I sent them out back to look under the deck, on the side of the house, and behind the trees, and I ran upstairs - just to be sure. Before my foot even hit the first step, my phone rang. It was our friend and neighbor. Not our next door neighbor, or our neighbor across the street. No, the call was from our neighbor around the corner and down the street - and far too close to our neighborhood pool, and the woods. The pool for reference is surrounded by the same fence you just jumped to get out of our yard a second ago.

There was a calm, yet shakiness in her voice as she told me she had you in her backyard. My heart immediately sank deep into my stomach, and I wanted to throw up. I could tell she was trying her best to remain calm, but she knew in her heart this was not good, and surely was the beginning of something we weren’t ready for.

You are by definition officially a wanderer. Wandering, or as some call it “elopement”, is an all too real problem in our autism community.

Addie, we use to pride ourselves on our fort knox style security, but you're getting bigger, stronger, and are equipped with amazing problem solving skills for getting your needs met without language or help from others. I think it’s safe to say we were about to be put to the ultimate test on safety, and no joke this could be life or...I can't even utter the words.

Some would say we need to teach and be stern with you about what's right and wrong or even the severity and danger of such events. I'm here to tell you, it's not that simple. You jumped our fence, walked through our next door neighbor's yard, into their screened in porch, through their house...LITERALLY WALKED IN LIKE YOU OWNED IT, went straight to the front door, unlocked the deadbolt and out their front door, and continued walking down the street.

I can’t even imagine what our neighbor was possibly thinking. God bless him. Surely you startled him with your unexpected presence in his home. He tried talking and redirecting you with no such luck. You were on a one-track mind to get somewhere, and unfortunately, to you he was just white noise.

Addie there are no words to describe how grateful we are that A.) he was home! B.) he clearly knew something was wrong here, and C.) he followed you, tracking you until you reached your next destination, where our number was on speed dial.

It's pretty safe to say my anxiety has been thrusted into high gear.

Honestly my mind is still racing from all the ”what-ifs”, and while by the grace of God (I'm pretty sure He put people who knew you in your path that day) all ended well, it has blown open the doors to the next very scary chapter on this journey. Not a settling feeling.

The endless research begins yet again. Safety. Period. Alarms, gates, locks, fences. You make all this seem elementary.

In case you were wondering, there is no chapter in any parenting book that can adequately prepare you for the wandering child, or researching different GPS tracking devices for your sensory seeking, minimally verbal child. Yes, you, the same child who at 3 years old chewed the clasp off of your stainless steel identification bracelet to get it off because it was clearly bothering you.

So where do we start in this chapter?

I haven't felt prepared for so much of what this journey has thrown our way, but this really has me feeling amiss. Other than refusing to blink, for fear of missing a move you may make, I decided to start with awareness of the situation at hand.

This week I began the process of registering you with our local police department. An experience that brought equal parts a small sigh of relief, and sadness at the potential necessity of it all.

I sat that night at dinner thinking to myself how many mothers or fathers have thought ”Ill be right back...” as they answer a phone call, use the restroom, or help another sibling with something? Do they ever think in a millions years that their child would simply vanish in their absence? This is our new reality.

So many things just keep swirling around in my head.

You wanna know something Ad? I’ve never been drawn to live in a neighborhood. It's true. I admit I very much have my own social anxieties that come right along with that statement, and I always thought you'd be safer, or life would just be easier (for whatever that's worth) somewhere far away from the congestion of the typical neighborhood.

Daddy felt differently and found safety for us in numbers. Addie, daddy was right.

Kind of a funny thing that what's right doesn't always feel right...remember these letters were originally inspired by an incident with some of those ”numbers” making fun of you at the pool that one day. I wanted to move right then, but clearly that was me being emotional and dramatic. Thinking back on that now, and if this would've happened out in the middle of nowhere on our dream, county estate with all the land, the ending could've been drastically different.

I'll say it again, daddy was right. Baby girl, this week was one I didn't want to believe would ever happen on our journey. I wish this week’s letter was cute, and would maybe get a million hits on YouTube for some silly kid stuff, like a mom leaving to use the restroom only to come back to her house resembling a snow globe with flour her child had happily tossed about.

Nope. It wasn't cute, or funny, or even YouTube worthy - you were gone. And it scared the hell out of me. It still does.

Addie I'm scared, tired, and have literally been waiting to use the bathroom until you’re asleep at night now. Working up to get that bladder of steel!

We’re gonna figure this out baby girl. I promise.

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Love,

Mom

A Birthday Celebration

Dear Addie,

This week we celebrated your amazing big brother Gabe’s 11th birthday! I still cant believe he's 11 - where has the time gone?

Now I know I've written to you about, well...just about everyone's birthday in our family, so you're probably thinking, seriously mom, there can’t really be anything new here. Right?!

But here's the thing, you may have noticed now that birthdays come every year and our family being a party of 5 means we get to celebrate quite a bit. Lucky us!

Now with you being predictably reclusive to the whole overwhelming birthday charade, we’ve been surprised the last year or two that ironically the somewhat predictability of these special birthday events has brought us moments where we can see marked progress in your journey. Progress on a number of different things have been quite difficult dealing with in the past.

For instance tolerating an excessive amount of people in a space than you’re normally comfortable with. Being OK with (or dare I say even playing with) a balloon residing in the same room with you, or God forbid someone sniffling from these dreadful North Carolina allergies and needing a tissue! Anyone who knows you knows your mind is set that tissues are the devils work!

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When you have sensory & social challenges the list could go on and on on how something as simple as a birthday party could make for a very frustrating, anxiety ridden day, rather than one to celebrate. But I'm happy to report that marked progress has most definitely been seen over time in all these areas! Kudos my love.

Now with big brother Gabe turning 11 we thought a small gathering - with a very few close friends on his actual birthday would be fun! (Lord knows I struggle with getting a traditional birthday party with friends, invites and goodie bags organized and executed on or near actual birthdays - the struggle is real.)

Let me tell you there are many things that make Gabe awesome, but his love and relationship with you is truly a beautiful sight to witness. As much as he’d want his friends with him to celebrate, he wants you there too.

You see Ad, even in your nonverbal years, and heck even now when language can be somewhat challenging, he gets you on a level not only a big brother would understand, but a best friend would as well.

He's always thinking of new ways to get you to laugh (the deep belly laugh kind of happy) and is eager to share your accomplishments or any autism information he may have come across with others.

He's super proud of you.

Most recently he discovered that the person who holds the world record for solving a rubik cube has autism! He thought this was pretty awesome because it was very much a hybrid of both you and him. With his love and insane talent of solving rubik cubes, and your autism - I'm pretty sure he’ll be trying to teach you in no time, so fair warning my dear.

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So with your rubik cube loving, big brother Gabe’s birthday here, we were excited to celebrate and see what new progress you would bring along with you.

Now Addie, with all the positive improvements we’ve seen, its important to keep in mind this didn't come without a lot of hard work and dedication from you. We see this, recognize this, and are amazingly proud of all you have done and continue to do. We’re seeing progress everyday and have seen notable difference in many aspects of our day to day functions and in family activities. Now don't get me wrong, we still have our fair share of bad days. Sensory meltdowns or tantrums (yes, tantrums) are still part of this journey whether we like it or not. In fact, just an hour before this small birthday gathering was to start, you had an epic episode that resulting in a much needed ”cool down” walk around the block. Not gonna lie, after this I was a little worried for how the rest of our evening was going to go.

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Luck seemed to be on our side and after a walk, all was right in your world again. Phew!

Guests arrived and it didn't take long for birthday-fun-chaos to commence.

For those who have never been to our house - it’s loud. Always. Instead of shying away from the chaos - you happily jumped right in and I mean literally, jumping and stimming nonstop throughout the night.

You played with the big kids, shared your swing & new fort, even played with baby Austin - who in my mind has definitely proven to be your baby muse! ...but that's a whole other blog ;)

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At one point I realized I wasn't tip toeing around your next move and there was just a sense of calm. It was Gabe’s day and that's where our focus was. You were happy and not irritated, even engaging in your own way with our guests.

When it came time for cake, you promptly got up to shut off all the lights as daddy lit the candles, quickly finding your seat back next to Gabe because surely he’d need your assistance blowing out his candles. Not to mention your little finger needed to take a swipe at the frosting - you know... to ensure it was safe for everyone to eat ;)

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So this weekend we celebrated Gabe and you were happily part of his special day. This meant a great deal to all of us, but was really extra special for your big brother who adores you so much.

Great job Ad.

Love,

Mom

I Want More

Dear Addie,

Do you remember the book, “If you give a mouse a cookie...”? You know, the one where he goes on to need milk, and a straw, then more, and more, and more?

I feel very much like the mouse on this journey. Yes I feel like the mouse.

Sounds kinda silly right?! But here's why...

I often here parents say (and I too have said this before) “I wish I could slow down time.” It’s a way of saying that we feel that our children are growing up too fast. It’s funny when I think about that phrase now, and where we are in our life.

I kind of feel like for us, it’s a little backwards. While we certainly cherish the moments and milestones, and know we’ll look back someday and think how fast everything went, I often think about wanting things to move along a little faster so we can see what’s next! Crazy right?!

I still remember the first time the nonverbal version of you took my hand and showed me that you wanted a sippy cup of milk. You were guiding me in your world, communicating in a way I wasn't accustom to, but communicating nevertheless. The excitement was overwhelming and indescribable. It was like I had just won the lotto, and very much left me wanting more.

You're a big 2nd grader now. You go to school 5 days a week, can find your classroom all on your own, have reading, writing, and math homework even! You're doing an amazing job, but I find myself wanting more. I still long for the “How was your day at school?” conversation, where you’ll tell me who snorted milk out of their nose from laughing to hard at lunch. Heck I’d even take “It was fine.”

We’ll get there one day. More will come.

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The past few weeks you have been more present with us. Spending less time alone, and more time not necessarily overly engaged, but “with us.”

These moments have spoiled me for once again wanting more.

As you sit on a stool in the kitchen watching me cook I want to hear your input on what to buy your big brother for his birthday? Where you would like to go on vacation? What we should or shouldn't eat for dinner?! Of course these things aren’t said. I know I should be content to have you choose to sit by me, but I want more.

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You were spending time with us, not screaming or crying just observing and being present. It's no secret we’ve had our fair share of troubling months, and now that we finally have a sense of calm (other than you finding any and everything you can to climb on) it’s funny, but I want more.

You gave me this delicious cookie of a moment, but now all I could think of was that I wanted some milk. I mean the cookie is good, but I want more.

Why do I want the milk so badly? Why can't I shake this feeling of wanting more and more and more? This is starting to bring on some serious mom guilt for me. No joke!

Some say I should appreciate the small triumphs and moments in life, and I do. I really do, but... I want more.

I still get misty eyed everytime I think back to your 5yr old self drinking from a cup for the first time ever at the Mason Jar Tavern.

That was almost 3 years ago, and I still can feel every emotion of that moment!

Am I just being greedy to want more from and for you?

I recently learned that there's a reason for feeling all this way, and it's not greed (phew!), but a form of happiness.

A professor from Cornell University named Thomas Gilovich has done numerous studies on what brings us the most meaningful happiness.

His conclusion? Happiness is derived from experiences, not things.

You might think, what does that mean?

A lot of things bring us happiness, but it's the experiences that give us the most lasting, and meaningful kind.

For example...mommy and daddy may be really excited to buy a new dining room table. We’ll save up for months and finally purchase the perfect one. We’ll show it off to who ever comes over, and feel happiness from our purchase.

Time goes on, and inevitably the excitement wears off. We remember less about how we felt looking for, saving up, and purchasing the table, but more about the experiences that we’ve shared around it.

The feeling of happiness we had when we purchased the table ended up being temporary, but the experiences that came from having it will stay with us forever. The laughter, the tears, the stories - all that is what we will remember.

It's not only the experience that brings so much happiness, but also the anticipation of the experience - or the ”wanting more” that also is proven to provide great lasting joy.

The ”anticipation” on this journey definitely comes with a healthy dose of patience. If something amazing happens, we build ourselves up for the next great thing, wanting more and more, but that might be weeks, months, or even years from now. We just don’t know. We will find happiness in the wait, because we know that one day the ”more” will come.

So in other words, we’ll gladly keep taking the cookies, but that glass of milk may still be roaming in a pasture somewhere (in a cow!).

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So my dear, on a journey that can make us feel a whirlwind of emotions, sometimes daily, it’s these cookies you give us that bring so much happiness, and leave us the lasting joy of wanting more.

Love,

Mom

The Trade

Dear Addie,

Part of adding new players to our team requires very in depth discussions of where we have been and where we should go from here. Where should we begin? ...again.

It didn’t take us long to find ourselves on the same page thinking your anxiety might be the perfect place to start.

You see baby girl, your hypersensitive auditory system has been a relentless enemy for as long as we can remember. Unpredictable sounds in unfamiliar places. Anticipation of auditory assaults not only outside of our home, but also present in what is to be your safe space of our home. All this resorting to and struggling with uncomfortable headphones just to go to the store, church, or drive to school...seemingly effortless tasks for most. The wrong sound or anticipation of such could result in fight or flight in a matter of just seconds.

It’s all so much for your young self to manage, and a real heart breaking struggle (to say the least) for us, as your family, to try and help you with.

Your reclusiveness to your room was becoming more and more. This being one of the few places you could find control of your anxiety and fear. It is here that predictability is present for you.

We felt that “exposure is key” advice growing not only even more difficult than it already was to execute, but the realistic possibility of carrying it out slowly slipping away.

Yep, we’d like to start there, anxiety.

Like I had mentioned before, every new step also involves a waiting period to see if this new step is in the right direction.

While I’m happy to report we’ve made marked positive progress in the right direction relating to your anxiety - we may have fallen into a vicious cycle of trading “this for that.”

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Allow me to explain.

At roughly 18 months old we received your first diagnosis of sensory processing disorder or SPD for short. This involved many aspects not only from basic auditory or tactile senses but also proprioceptive and vestibular senses. Those big fancy words are all in relation to your body’s ability to move through your environment effectively and stay balanced.

You my dear are hypersensitive with your auditory senses and just about everything else - hyposensitive, meaning you need more and more and will continuously seek it out until the need is met.

Proprioceptive is related to anything with pressure to your muscles and joints, so things like squeezing, hanging, climbing, and jumping, all of these meet this need.

Vestibular involves anything with movement, like spinning, swinging, or climbing something high - really high in your case.

With your anxiety beginning to be more manageable, you emerged from your reclusion of your room and your exploration and sensory seeking have gone into overdrive!

Insert Addie “Evel Knievel” Menzo!

That’s right Addie, You seem to have graciously passed your anxiety on to us as we struggle to stay a few steps ahead of you and your love of death defying heights attempting to get the sensory needs met.

You are a climber, which makes things extra fun around here these days. *Insert a healthy dose of sarcasm in that last statement.

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“Addie proofing” our house is exhausting and requires a great deal of creativity to accomplish any of it.

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I miss the days of “baby proofing” our houses when each of you were young. Looking back that seemed so easy and uncomplicated to where we are at now. Door locks, outlet covers, baby gates - ah yes, the simple stuff. It all seems so elementary for you at this point.

We need something more along the lines of trapeze netting and 12 in gymnastic mats everywhere in our house to keep you safe! Oh how I wish that was actually an acceptable or realistic option.

Maybe move a 12th time? Perhaps we just need a sprawling ranch sans window sills? Ha! But who am I kidding you’d surely find your way to the roof in no time.

So with anxiety at bay for you, operation keep sensory seeking Addie safe has begun for the rest of us.

The past week or two has been filled with researching and creatively modifying our house on a nightly basis. That’s 1000% not even an exaggeration!

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Balcony banisters have been adjusted to make them higher,

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window guards have been put in your windows to keep you from standing and perching there and we even set up scaffolding in your room to create a safe climbing structure that doubles as a sensory friendly fort.

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With your lack of fear, add in an abnormally high pain tolerance equals mamas heart skipping a beat far to frequently for my comfort!

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So while we may have traded anxiety induced screaming and fight or flight for dare devil stunts, I’m hoping (& praying) this is just a surge in new excitement of living with less anxiety.

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If there’s one thing I have been enjoying (other than “less” screaming) your proprioceptive senses have been seeking extra cuddly squeezes from mama :)

I love you baby girl!

Love,

Mom

One Day

Dear Addie,

This week it was all about our One Team, One Dream family motto, and while we were supporting those within our autism community this was only indirectly about you my dear.

Allow me to explain.

It started with our beloved autism camp, Camp Bluebird, which is part of 3 Bluebird’s Farm in Holly Springs, NC. Not only do they host an amazing summer camp for you (even track-out camps for others), but they are also home to a group called the “Take Flight Club” consisting of teens with autism. This particular group gives autistic teens opportunities to get together in different settings, not only to have fun as friends or give back to our community, but also to work on those all important social skills that so many individuals with autism struggle with. Remember that whole ”exposure is key” advice ;)? Well that's lifelong advice for this journey.

Now you might be thinking, what does a teen autism group have to do with you at 8 years old? The answer is nothing... yet.

You see Ad, you may one day be part of this amazing group. Traveling within our community making friends, having fun, working on your social skills - surely stealing hearts with your infectious smile, and while you’re not there yet, others are. Which brings me to our family and how we ended up with this amazing group of teens and spending time with them over the weekend.

Now it's easy to identify you as the the MVP of our journey, but the fact remains we are one team and are all walking this path together. The special needs community is now woven into all of us. Whether we are directly affected or not, our hearts will always be ever present here. So when we heard that volunteers were needed to assist 3 Bluebird’s Farm Take Flight Club with an event at the Windsor Point Retirement Community - we didn’t hesitate to offer our help with whatever was needed!

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Now seeing you were too young to join this time, you stayed back for a little daddy/Addie day, while Clara, Gabe and I went ahead to help out.

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Eager and ready to help, we wasted no time jumping straight to work! (But seriously it was hardly work and more fun than anything else). We assisted in making flower arrangements for everyone,

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and supported take flight members in delivering flowers & sugar-free candy to the residents while working on proper social greetings and even making some small conversation.

You know what Ad, they did awesome!

This my dear was truly an amazing amazing day and we even made a few new friends in the retirement community that we have already been back to see!

So how is this about you my sweets?

Well...

One day (far too soon) you will be a teenager.

One day this may be exposure you will greatly benefit from.

One day there may be another mother of a young son or daughter with autism volunteering her time. She may show up with her anxiety and fear hidden behind a smile of the uncertain future for her child that seems to come with the territory of this journey. One day that mother may be just as excited as I was that this opportunity exists and hopeful at the potential progress her child will make after watching how amazing all these young adults did.

One day Ad, one day.

For places like 3 Bluebird's Farm we and so many others are forever grateful not only for everything they do - from education, to fighting for the future of our autism community, but also for giving us the opportunity to help out and gain a glimpse of what ”one day” might look like for us.

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One day Ad, one day.

Love,

Mom

Two Sips Forward, One Step Back

Dear Addie,

Here we are, same journey just reading a new playbook.

With every new change it’s hard not to hold our breath while we sit just waiting to see, good or even bad, what will come of it. An all to familiar place for us.

Well, much to our delight Addie, we didn’t have to wait long! We saw noticeable changes this week with your anxiety and behavior moving in a very positive direction! Way sooner than we or anyone else had expected.

While I’m confident stimming, consistent movements and random sounds will always be part of your makeup, the anxiety we’d grown so accustom to was noticeably diminishing, leaving us all (including you) breathing a much needed sigh of relief.

With this new demeanor we thought no better time than now to jump into working through some sensory anxieties. And what better place to start than the common social outings of Sunday church, and perhaps lunch at a restaurant - we got this!

Here’s the thing Ad, there’s a laundry list of things I’ve learned from this journey, but one very important thing being that everything we do has an opportunity for growth and learning. There’s education all around!

With that in mind, it was time for our first outing of the day - church. We took headphones, a pull-up, but no bag of tricks for distraction. No snacks, no flash cards, no fidget spinners, nothing. I’d be lying if I said that even I had to take a deep breath for this one.

Today we were determined to begin working through sensory distresses (if they arose) and really focus on taking in your surroundings. Feeling less anxiety, our hope was for you to see this was a place of comfort and peace, not the house of sensory assaults your anxiety had lead you to believe.

We sat in the lobby, as we normally do and you stimmed, flapped, jumped as usual - only this time you also took notice and sat, stood and kneeled with the rest of us as well.

You only requested the potty three times (you're smart and knew this would require a walk and change of scenery), and still gave a solid attempt at splashing in the baptismal font on your way by during your Communion blessing. Avoiding the temptation of what looks like a pool in the middle of church is crazy tough!

For our first outing sans bag of tricks, this was a great success! Our next thought...let’s keep this momentum going!

Lunch anyone?!

After a quick trip to see dads new office downtown, we headed back uptown to our favorite local pizza place. A place we had been frequenting since you were in my tummy :).

It’s here that they know us well, kind of our own version of “Cheers” only it’s in Apex, not Boston and it’s a pizzeria not a bar, but you get the point.

Not wanting to push our luck to much, I put a few pink squares (strawberry starburst) in my pockets and grabbed a “white drink” or ice punch Gatorade (your favorite) to bring along.

We sat down and wasted no time in placing our order. With the day going so well we thought we’d try our luck once again and order you a drink with a straw. A straw? Luck? Sounds weird right?!? Well, using a straw isn’t exactly a concept you’d grasped up until now. In fact, we were just talking about adding it to your list of OT goals.

It didn’t take long before our whole table was pursing their lips, sucking up air, and trying to show you how to use a straw! One team, one dream - and we may have looked (& sounded) ridiculous.

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Our ridiculousness paid off when you wrapped your lips around the straw and giggling and bouncing somehow sucked air in enough to get a little drink too. One up! You had a look on your face like “what just happened?!” We all cheered with excitement!

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Pleased with your new found skill you went back in for a few more sips before abandoning it for the remainder of our lunch.

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Even the simplest of new skills can be exciting, but exhausting all in the same breath.

With all of our excitement it was hard not to take notice of our table to which one 20 something year old and her family did. Only taking notice in not our excitement of your new found skill and our amazing day of progress, nope, but the fact you had slipped your shoes off and she made her disgust of such quite known.

It was then I was reminded that with all the education and advocacy out there, it will never reach everyone. They will never know how hard just going out to eat as a family is for us. How hard and long it has taken to get you to use a straw. How excited we were with this new skill.

My initial feelings were anger, then hurt and sadness, but then I remembered we just had an amazing day and I couldn’t let this judgmental person ruin this for our family. Nope.

Addie, we were so unbelievably proud of you this week. You are doing an amazing job! Keep it up!

Love you!

Mom

The Quarterback

Dear Addie,

The time had come. It was time to meet our new quarterback. Although you had no idea where we were going, you seemed to find enjoyment in driving along on a day date with mommy and daddy. Surely your mind was swirling with plenty of fun possibilities of what today would hold! Mommy and daddy were excited too after all, so maybe our mood was infectious.

We had arrived at our destination and almost on cue your demeanor started to change. Just the sight of what appeared to be medical buildings lead the anxiety to creep in. There’s no fooling you, you’re super smart Addie. I slipped your headphones on and you knew, nope, we officially weren’t going to the park to swing and eat “banella” (vanilla) ice cream! At this point you were probably thinking “I’ve been duped! Flag on the play! Where’s the penalty?!”

Headphones on, dad's hand in yours, mom holding our bag of tricks and an encyclopedia of paperwork - we entered the building...

One step in, and you completely froze. Your shoulders shot up to you ears, readjusting your headphones, and you began to shake. You didn’t run or scream, you just stood shaking like a stiff leaf.

With reassurance from mom and dad that it was OK, we were able to move closer to the elevator. As the elevator doors opened you were still unsure, you bent forward leaning your head in first to ensure there were no hidden surprises of distress before entering.

You clung tight to daddy and up we went. Lucky for us it was only one floor.

The doors opened and daddy whisked you off to a small corner of the waiting room where some books and small toys were located. You ditched your jacket and headphones almost immediately before snuggling in close to dad to read a book as I checked us in.

All was going well until your name was called and right on cue you began to cry. Crying in such a way to let us know that you were not pleased with whatever was about to happen, but also not fighting us on moving forward because you were still very unclear about where we even were.

With our triage of the standard height, weight, blood pressure yada yada completed, we were ushered into a room where you took one look at your surroundings and the crying ensued only a little louder.

You see Ad, you have a love/hate relationship with the typical doctors office medical tables. You know, the ones covered in paper?! The paper is crunchy and ever so fun, but if you have to sit on it, that means the doctor is going to invade your personal space, and let’s be honest there’s still very few people that you’ll even give a hug to because it’s invasive to you these days. A lot of autistic individuals feel threatened if their personal space is invaded, but on the flip side, think nothing of being a space invader themselves.

So safely sitting between mom and dad (in chairs) the doctor gave a soft knock and slowly opened the door. He emerged in an almost delicate manner smiling and gently (in a very none startling way) grabbed a chair before sitting down on our level to introduce himself.

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His approach couldn’t have been more perfect for you! Clearly this was not his first rodeo. Your demeanor started to relax. You didn’t seem to be feeling threatened or teetering on the edge of fight or flight.

This seemed to be going quite well already!

Now, I need to back up just a bit for this next part. Prior to our quarterback visit, I had filled out and faxed over 30 pages of medical history and recent evaluations to the office. Yes, 30 pages! Starting from my pregnancy with you until present day.

Side note: I’ve been to my fair share of doctors who I’ve done similar due diligence for and it seems when they’ve walked into the room that they only spent the last 30 seconds before seeing us looking at anything!

Now back to the visit.

The doctor introduced himself and started by saying “before we get started, let me tell you what I know about Addie - would that be ok?”

I remember thinking - ummmmm OK?!

He proceeded to rattle off, in great detail, without looking at a single piece of paper your entire history. My mouth may have dropped. I knew right then we were in good hands.

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As the appointment went on you eventually mustered up enough courage to give a few solid attempts back and forth of sitting on that crunchy paper table all on your own before actually doing so. With this act alone and the amazing conversation of our new potential game plan, we were feeling even more optimistic that we were on our way to finding relief for you (and us)!

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We left that day feeling as if we had just drafted Drew Brees to our team and we were equally excited about our new game plan!

Let’s do this Ad!

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Love,

Mom

Guiding Light

Dear Addie,

So there we were. Dad and I sitting next to each other, holding hands as I was telling the story of you aloud. Across from dad was a young woman eagerly taking notes, and across from me was a woman that we were so anxious to meet. A woman we’ve affectionately been referring to as the beacon. That’s right my love, we were actually meeting with her and sharing our story.

I was practically shaking with excitement feeling very optimistic, but anxious and nervous all in the same breath.

I wonder if she knew how much our “complicated case” needed her.

After some brief introductions, her simple words “how can I help you?” nearly sent my waterworks into action (seriously mama we just got here! Get it together!) As I sat clutching a folder thick with countless evaluations and test results, ready to share if asked, daddy began to speak of the roadblock we’d seemed to stumble upon recently, and our need for fresh eyes and guidance on our journey.

You see Ad, when we are in the thick of some of the harder parts of Autism (the behavioral issues & developmental delays etc.) it’s hard to take a break or a step back and look at the big picture. Everything we do from therapy, medication, techniques and the like, they all take time - 30 days, 6 weeks, 6 months, everything has a time in which you ”should” see improvements.

There are days when you question yourself - whether sticking it out on these timelines are worth it. You always try to stay optimistic. Then there's the defeat when you've made it to the suggested finish line and nothing’s changed or worse - regression sets in…

Anyway, back to the meeting. She asked us to walk through your story. The WHOLE story – from pregnancy all the way through present day. Complications, milestone, lack of milestones, evaluations, any diagnosis’, therapies, medications - all of it. Little known fact about mommy, I've filled out so many sets of paperwork involving history reports that I have your life memorized. For real baby.

This was my cue.

As I rattled off your history from NC, to NY, to TX and back here to NC again, I officially started to cry. We had been so many places in your young 8 years seeking advice from so many people - yet here I was. Completely broken. She was quick to hand me a box of tissues with a soft, sympathetic look. Somehow I felt like I wasn't the first mama in her office crying.

As I gathered myself together, she began to give us her thoughts. She was professional, careful with her words about our path traveled and decisions we’ve made along the way so far, all while staying compassionate in her response.

She agreed a clean slate evaluation would be best, and had a new quarterback in mind already tailor fit for our family and most importantly – for you. As simple as it sounds, this basic and sage guidance already made dad and I start to feel encouraged.

“Yes, a new quarterback…” I could see the wheels turning in dad’s head – but then needed to remind him that we were talking about you, not the Lions…

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We were on our way baby.

Love,

Mom

The Beacon (Part 2)

Dear Addie,

Now where was I? Oh yes, we had just left the doctor’s office with a piece of paper that he gave us. On the piece of paper was the name of another professional that he said would be a “beacon” for us if there was any way to get in to see her, which was going to be quite a trick since she was no longer seeing patients.

So, as we walked to the car I had a massive swirl of emotions – on one hand, I felt excitement that there was a glimmer of hope that there was someone who our current “quarterback” felt could help guide us, and yet on the other, I felt guarded against that hope because there was so much risk that we wouldn’t ever get to meet her, and even if we did, would she really be able to provide us with any new guidance?

We sat in the car. Choking back tears I called daddy to tell him how it all went.

*** Side note: if you haven’t figured it out yet I’m emotional, I cry a lot, especially when it involves my children, I'm tired and frustrated.

Ok, back to the call.

I was excited to tell dad that the doctor had a new recommendation of someone we should try and see – a “beacon” as she was described. But getting to see this person was going to be no easy task, as she wasn’t seeing patients anymore, and as one of the world’s leading researchers in the area of Autism and Developmental Delays, she is nearly impossible to get an appointment even if she was.

As I was rehashing the story to dad, hearing my own words, I began to get more and more discouraged, and by the end I was crying (again… my goodness momma – get it together!). I didn’t even say her name. I just said it’s not even worth getting our hopes up, because it’s not like we’ll ever get to see her anyway.

Here’s the truth baby girl, you were struggling. Struggling with just being. You were becoming more and more isolated, and having to constantly decompress in your room. We could hear your swing bounce from wall to wall for hours as you tried to ground and comfort yourself. You were struggling at school, acting out like we’ve never seen before. Throwing tantrums (and chairs!), and just really anxious and upset wherever we went.

Why couldn’t I make this better? I wasn’t looking for a magic “fix” (you’re not broken, I didn’t need to fix you), but I just desperately wanted guidance on how to help ease your struggles, help you swim to the surface for some air.

So while I sat broken, and telling daddy how I was feeling, he was in a faraway place having a very different kind of day than we were…

---------

Hi Ad -

Its dad – you know the guy who makes elephant sounds on command, and chases you around the house playing Frankenstein and tickling you? Yep, that guy.

I know the past several months (years really) have been really tough, and that in your bubble, your mind is working overtime to figure out how to exist in this place that you don’t quite get.

I know it’s tough not to be able to tell us what you want or think, I know you are sad and anxious and frustrated not to feel comfortable in your own skin, and especially the sadness you feel after you lose your shit “shoot” and then feel remorse afterwards. I can’t imagine how it feels to be you, and I am so proud of you for trying to figure it out.

As mom has been telling you in her letters, the past few months have been especially tough, and now that you are a big 8 year old kid, everything seems to be tougher and more intense. So the day that you and mom were at the doctors, I know it was a real disheartening message to hear that there may be an expert who could help guide us in a new direction, only to get discouraged about actually ever getting to meet her.

Well, the story takes a very different twist.

Because it so happened that that very day that you and mom were here in NC at the doctors, I was in New York meeting with some very special people. Let me explain…

You see my love, daddy gets to do something very special for his job. He gets to work for an incredible organization that is full of amazing people who are working hard every day to find cures for blindness. There are thousands of people going blind and we are working super hard to help them. The man who started my organization, who has gone blind himself, also helped support the start of another very special organization called… Autism Speaks. True story.

This special man has been very kind to our family, and knowing our story invited me to a meeting with some of the world’s experts in New York, on the same day that you and mom were at the doctor’s.

So while mom was telling me on the phone how defeated she was feeling, I was biting my tongue with excitement that I had news to share… one of the people I had met with in New York knew a world class expert that happened to be really close to us in North Carolina. “She is just amazing” they said, “She would be such a guide for you – a beacon!” (Ok, truth be told they didn’t use the word beacon, but I am taking creative liberty…). The only problem (you guessed it) is that she wasn’t seeing patients anymore, but they were going to see if she would meet us as a favor.

“Her name is…”

As I told the great news to mom, I wasn’t sure what happened. Did the call drop? There was no response. “Honey? Are you still there?”

----------

I could hardly speak. Did that really just happen? Dad just said the name I had written on the piece of paper. What just seconds before felt so impossible, was now undoubtedly going to happen. God works in mysterious ways my dear. Really and truly.

The stars aligning, a God wink, unbelievable coincidence, fate? Whatever it was, we were so ready to happily accept this gift of light! I would fall apart a hundred times over for a moment like this. It was as if we had won our own personal lottery.

We were going to meet the beacon…

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I love you.

Mom

“Even a glow stick has to break before it can shine.”

The Beacon (Part 1)

Dear Addie,

A couple months ago I found myself in a doctors office exhausted, frustrated and completely spent. Tears streaming down my face as I sat in front of a doctor intended for you. I think it was safe to say he didn’t see me melting down coming. We all have our moments my love.

It was a regularly scheduled appointment with a very good doctor at that we’ve been seeing for almost 3 years. Our “quarterback” in our journey if you will. A doctor who has seen your ups and downs, and on this day you just happen to be in a manageable mood; accepting of your surroundings and giving minimal push back. A good day in our books.

We were led back into a room, not like a typical doctor’s stark white sterile fluorescent lite setting - no, it was a carpeted, dim small room with toys and a coloring table to help ease your anxieties.

You sat sorting crayons by color, scribbling each one on a piece of paper before it was strategically placed in a row next to the others before it. I sat with the doctor discussing the concerns I had, as my emotions slowly rose to the surface. Next thing you know, I was a full blown water feature. Seemingly unaware of my meltdown, you continued to sort your crayons.

I felt lost.

We had done anything and everything possible in terms of care and treatment, but we were still in complete disarray. Growth spurt? Hormones? Change in schedule from the holidays? Your fight or flight mode was heightened these days, potty training was in complete regression and the screaming was worse than ever. I had no idea what was going on, and quite frankly we needed someone to throw us a lifeline at this point.

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I’m pretty sure this was the point when he looked at me like I was having a nervous breakdown - and I probably was, or at least riding the edge of one. Then he said in the calmest most sincere manner, if we could get into see this one person, she may be our beacon that we so desperately needed. A person he tremendously respected professionally. A set of fresh eyes to our journey.

Only catch (of course there was a catch right?) was that this so called “beacon” was no longer seeing patients. Ah, that almost felt like something there, but then very quickly felt like nothing.

But how did we get to this point?

Addie, this journey no doubt has brought some of the most joyous moments I’ve ever felt. Blessings run wild, but they come with another side that not many talk about.

It’s really, really hard, and there’s no such thing as a rest day. Every single day is a full plate of education for us, learning something drastically different than the day before.

Your struggles are 100% real.

The outward distress of you tensing up, screaming, crying, hitting over a sensory assault of some sort - I can’t even begin to fathom the pain that causes you internally. As a parent it’s heart wrenching and very stressful.

I cry. A lot. Now I’m not a sobbing mess everywhere I go (I can pull myself together), but alone in our home I cry.

I cry because there are so many times when this mama, who like most, would claim they have a PhD in their child knowing any and everything about them, and yet I have exhausted my ideas on how to give you the help you so desperately need. Clearly I’m still working on my post doctorate now.

We’re armed with an extraordinary amount of knowledge (it comes with the territory), but with a spectrum disorder it’s a giant hybrid game of life and chance.

Honestly one of the toughest things we’ve experienced is when doctors say “she’s a complicated case.” This phrase has been uttered by numerous doctors and therapist on a number of occasions over the years. Those we look to for the most guidance. (Side note: this is not an anti-doctor or medical field statement. Even holistic approaches had opposite effects than we expected for you). Now kudos to you for being unique baby girl, but those are probably the last words anyone looking for guidance is hoping to hear.

So there we were leaving the doctors office still “a complicated case” only now with a long shot of our potential beacon seeing us.

Feeling defeated I called daddy, emotional and sobbing. You see that particular day daddy was out of town at a very special meeting that could fit a few important pieces of our puzzle together.

In a million years you would never believe what happened next...

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To be continued.

Love,

Mom

Practice Makes Progress

Dear Addie,

There are hundreds, probably thousands of parenting books out there, but if there's anything I've learned from any number of those books, it's that parenting is a learn as you go journey and truly your very own journey at that.

Parenting a child with a significant amount of sensory distress can seem like you're trying to parent in the most unfamiliar place -- like Mars!  You have an idea of where you need to go, but you can't get your feet firmly planted on the ground long enough to take off in the right direction at any significant pace.

Advice from other parents can be quite helpful, and if I'm being honest there probably isn't anything we haven’t tried via suggestion, but when it comes to autism or sensory processing disorders (you have both), no one child is the same. To manage each sensory distressor can get challenging. Rub an oil here, put your left sock on inside out, put pants on right leg first, eat this not that - we’ll try it all, but at the end of the day the fact remains there's no one size fits all approach here.

Everyday places from school carpool, the grocery store, birthday parties, a doctor office waiting room, to the gas station - yes the gas station (you have separation anxiety as soon as I step out of the car), can be stressful for you to say the least.

Just the thought of taking you somewhere which may cause a sensory assault on your processing system is enough to make me want to resort to being full on introverts and never leave the house! But then there's that whole ”exposure is key” thing. Ugh.

Some days I want to find who blessed us all with this piece of advice for autistic families and say ”seriously - you got anything else, because this exposure thing is for the birds!”

Daddy was out of town this weekend and it was Sunday which meant we would be heading to church. Mark it - mama was adulting solo. There would be no divide and conquer if things went awry, just a bag of tricks, a deep breath and a quick prayer.

Our faith is important to us, and with that comes my relationship with it.  It's a healthy dose of questioning, and yet I depend heavily on it.

There's a sense of peace we enjoy from going to church and sharing fellowship with others, but church is hard on you. There's auditory distress in every room we go in, and headphones only do so much. We don't have a special needs mass at our parish, but they really try to bring home the ”all are welcome” mentality. While we appreciate that sentiment, you stim and make (loud) noises every 25-30 seconds and with your most recent go-to noises sounding much like a tornado siren or howling wolf (not entirely church appropriate), so the lobby where we reside.


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Through much trial and error we've learned if we lay out a number of flashcards on the ground they are a good focal point for you. If you become agitated we will start asking you simple questions about the cards or switch a few out to create distraction. While this has been a blessing, even with this, our time is limited.

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On this day it was crazy loud with crying babies and giggling toddlers - two of your least favorite sounds.

I was just waiting for the shoe to drop and a full blow meltdown to rear its ugly self, triggering my anxiety of people staring at you like an exhibit and the guilt that I've brought you to this place of distress to come bubbling to the surface.

It can be emotionally and physically exhausting not only on you, but all of us.

But this day was different. The shoe never dropped. Predictably unpredictable.

Your flashcards were out, you stood when we stood,

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sat when we sat, and when we kneeled, well, you laid down.

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I'm pretty sure you saw other children much younger and smaller doing such and thought - yep I like their style! I'm positive people didn't think much of the toddlers crashing to the floor, but a giant 8 year old - surely we got a few second glances.

No meltdowns though, so this was a good day indeed!

At about the 45 minute mark, you had had enough. You started gathering your cards and putting them bag in the bag repeating ”a bye byes” louder and louder. We could visible see your body stifffing up where your stimming takes over nonstop and your legs start losing their bending ability - you're like an angry, stiff board. And that's our cue! We’re done here.

We proceeded to gather the rest of our things and head to the van. Once you were buckled in, I could see the relief as you relaxed and took a breath. It was as if you held it together for as long as you could, but you were finally ready to erupt and you knew it!

You know what my dear, I was so unbelievably proud of you this week. This was hard! While we didn't quite get to the finish line, we got pretty darn close and that counts all the same in my book!

Practice makes progress, and from the looks of it we were headed in the right direction.

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Keep it up Ad!

Love,

Mom

365 Opportunities

Dear Addie,

This week we welcomed another new beginning to our journey! That’s right baby girl - It’s 2019! Happy New Year!

With all the excitement of what’s to come, it’s always nice to look back on what was.

We had another amazing year. Filled with familiar endless research on my part - surely I should be a scholar by now? Successes, milestones and struggles all seemingly peppered with lessons along the way.

Between Clara, Gabe and yourself, you all stumbled into some sort of 2018 growth spurt! Clearly I missed the memo here and I’m quite sure I’m on track to be the shortest in the family now. Big sister Clara even has to reach things on high shelves for me these days! Can you believe that?!?! But it’s all good, while I may have missed the growth memo I did however win a new set of fancy luggage! It’s perfectly stored under each of my eyes (insert a healthy dose of sarcasm) - yep we’re all a bit tired.

All joking aside, I feel blessed that I can give so much to you all (even if it means being a little... ok a lot tired)! My family, my friends, my job, I love it all. One day I will be far less needed and relish in taking a mid-afternoon nap, which I will happily do. It’s all good sweet girl, mama's tired it comes with the territory, but I’m happy.

With a new year comes New Year's resolutions. Kind of a big word huh?! Resolutions.

Well, not only is it a big word, but it’s kind of a big thing for a lot of people. In definition it’s a firm decision to do or not to do something. People will put all their eggs in one basket on something to carry through for 365 days. Most often those eggs (or resolutions) look like self-awareness, losing weight, or eating healthy. All great things no doubt! Now fast forward to the end of January and they’ve cheated or somehow failed in their resolution inevitably deciding scrambled eggs taste great and maybe next year it’ll all work out. Num num num num num.

Here’s the thing Ad, wherever your story began, New Year's always seems like a great spot to turn the page for a new chapter. A fresh start, if you will. Hence the resolutions.

I read something the other day that welcomed the new year as 365 new opportunities - I thought that was such a cool way to look at it. Even if you decide to scramble your eggs, forgive yourself and fill your basket again. Give yourself another opportunity to succeed! How often do we remind each other that life is not a competition or race, but your very own journey.

Whatever your resolution may be, take a deep breath every single day and give it your best shot! Who knows it might turn out perfect, but if it doesn’t - don’t give up! Sometimes we fail (we all do, we are human) and doors will close only for new ones to open. Promise. It’s not the end. Try again!

So what do you say we relax this year baby girl?! Let’s find the joy in the 365 opportunities we get. Stress less and maybe sleep a little more ;). I wouldn’t be sad if you decided you were done with diapers either- just sayin'.

Whatever this year holds for you and us, we have 365 opportunities to make it work to truly be what we want.

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Happy New Year Addie!

Bring on 2019!

Love,

Mom

8 Is Great!

Dear Addie,

This week you turned 8. Gulp. You’re such a big kid now. 8 years old - where does the time go? I know that might sound cliché, but seriously it sneaks up on me every year, and not just because it’s the day after Christmas!

I know what you're thinking - it’s a birthday, it literally happens every year! Get with the program mama!

But here’s the deal my sweets, in this journey, I for one, can easily get caught up in the predictably unpredictable ridgetity (that's a mouthful right?!) of the day to day, and before I know it the years creep faster and faster! Weren't you 4 just yesterday?!

It's crazy how everytime I think of your birthday, I’m somehow stuck in the memories of your actual lightning fast delivery the day you were born. And then the 5 year old version of you who was just learning to successfully blow out your candles. Everything else just seems like a blur. Gosh that sounds horrible to say out loud, but it's true.

You see Ad, birthdays are a whole lot of sensory craziness. Balloons, extra people, singing, overall increase in noise level - it’s an intense experience. A far cry from the norm, unless you’re a clown. Kiddos like yourself tend to shy away from such a scene for fear of potential distress.

Now you’d be hard pressed to find a mama that doesn't recall just about every painstaking detail of the birth of their children, and each birthday milestone. But for us 5, yes 5 was extra special because it held a new first. This was the first time you figured out how to blow out your birthday candles.

You’d hardly know it now, for these days if you’re in attendance at a party, and the guest of honor isn’t fast enough getting those candles out, you will without question swoop in and take care of it for them! Your kind of a wish thief ;).

But what most people don’t know is it took a long time, and a lot of therapy just to be able to accomplish such a task (although you seemed to master the art of snorted out candles quite well. Maybe save that talent in your back pocket as a future party trick ;)).

Back to the present day - you're 8. Clearly I've not been successful at stopping time, so there you stand only moments away from being taller than I. Side note: You don’t get your height from me!

Last week I received a school transportation card for the 2019/2020 school year - It had your listed grade printed in bold right at the top - 3rd grade. Insert mommy now feeling old and getting far too misty eyed for looking at a bus schedule, it's really official your not a baby anymore!

With this big kid version of you, we decided maybe it was time for another first, or at least time for a good solid attempt at one for that matter. With years of sensory issues and the lack of communication not necessarily making you the most popular kid at the table, we decided to give it a go on hosting a birthday party outside of our home. This obviously could only go two ways, so with the 50/50 shot we were all in!

With our Florida cousins in town, sister, brother and your good friend Lil all ready to party, the invite list was set! Now on to location!

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Having just experienced how well you handled big sister Clara’s birthday party at the DIY Knack Craft Studio in Raleigh, we thought this might be a great place to host 8 being so great!

As luck would have it, the owner was more than graciously willing to make some modifications to the same party we had for Clara creating a little more fine motor and sensory friendly party. Yay for us!

Seriously Addie they really went above and beyond for us!

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We arrived and couldn't help but notice all the love and dedication that the studio put into this event. The whole place all to ourselves, music low, all projects set up at the lower tables for easier access, no-handle “easy to use” sponges, and plenty of happy, eager volunteers to help!

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Let’s do this!

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After taking some time to stand up all your new found ”like-object” sponges, you gave it a solid attempt at stenciling your birthday party pillow cover.

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Honestly Ad, you did great, only taking about 9 breaks for ”a chaklets (m&m’s)” and 2 Gatorade drinks. Well done!

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Next up was a homemade chocolate cake that brother Gabe decorated with his new piping tools he got for Christmas.

Gabe’s first attempt at piping a cake. He did Great!

Gabe’s first attempt at piping a cake. He did Great!

To add even more sweetness to this cake your friend Lil asked if she could put your candles on. Then requested we pretend the pink candles were red so it could be NC state colors ;) - she loves NC State! To top it off she added one blue for good luck and we were ready to sing!

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Candles lit, good friend Lil close by “in case you were scared” - in her words, and a very quiet version of happy birthday was sung. Cue mommy & daddy tearing up, and with a couple of tries at blowing out candles - 8 year wishes were made! Yay!

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So this week we celebrated a big girl version of you sweet girl. We were so proud of how well you did at your first “out and about” birthday party! Not to mention how very grateful we were to The Knack for helping us make such an event possible. Great job!

Here’s to 8 Addie! I just know it’s gonna be a good year!

We love you!

Love,

Mom

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The Hustle And Bustle

Twas getting close to Christmas,
and all through our schedule,
was filled with the hustle and bustle
of much that was special...

Bring on the busyness!

That’s right Addie, every year as the year winds down there is always plenty to see and do. Between school, birthdays, parties, etc. this leaves no room for mommy to suddenly fall ill - oops I must’ve missed that memo this year, but this is a happy story I promise!

It’s true Ad, it didn’t start off well with mommy waking up very ill on Friday morning. So much so that I couldn’t even leave my bedroom - but God bless our dream team rallying into action to get it all done! Daddy woke everyone up, breakfast was made, lunches packed (your big brother Gabe even packed yours to perfection - yep that could’ve made my heart explode from the sweetness overload!).

With all the differences in this morning routine, I think we can safely say you weren’t exactly the happiest of kids, but life goes on, and daddy needed to get all three of you to school, so there was no time to sit around and listen to you voice your displeasure in this current disruption of your routine. To the car Addie!

Now with all this craziness in the morning, I would’ve put money down that the rest of the day would’ve been a downward spiral for you.

Side note - it’s a good thing I work in a cafeteria and am not a professional gambler Addie.

We picked you up, and lo and behold, you had an amazing day at school! Wait - what?!?! I mean that’s great, but what?!? All I can think of, is that the morning was so incredibly off, that you welcomed your consistent school routine with open arms. Whatever it may have been, we’ll take it!

Predictably unpredictable - check!
Mama slowly rallying (God bless Zofran)- check!

Next up, a surprise visit from papa and grandma Menzo! Whoop! Whoop!

A little birdie caught wind that grandma and papa made a quick stop at Target before arriving to our house, so you and daddy decided to reciprocate the surprise and meet them there! Success! With your good mood still lingering, you wasted no time dragging Grandma around the store stimming and showing her all of your favorite things! You may have scored some toys as well ;).

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With your mood still manageable, mommy still rallying, and grandma and papa having arrived safely, next up was big sister Clara’s art show and holiday chorus gathering at her school.

Not gonna lie, I waivered back and forth on whether this was something we should take you to (there is such thing as pushing our luck) but in the end we decided to just divide and conquer if there was an issue. So it was our usual OTOD plus grandma and papa all together, and away we went!

You held it together pretty well with only mild irritability during the open art show portion. The distress you displayed seemed to stem from the amount of people present being a bit overwhelming (large crowds are hard), and the normal overall look of everything was different than you were used to seeing.

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While it was clear you were irritated, your communication was spot on as you said “I want cats please.” 

Yes, Clara’s school is amazing and has two very loving cats (sensory pets) that are normally roaming about, but today they were housed in their safe space adjacent to Clara’s classroom. With so much looking quite different, you were trying to calm yourself by seeking something familiar. Great job baby girl! And to the find the cats we all went! Here kitty, kitty, kitty.

With a quick cat visit complete, it was time to return back to the main room for a small holiday chorus performance. Not feeling super comfortable in the main room, we found a nice spot in the adjoining room where all the snacks and drinks were laid out (well played Ad) and we had a really good view of Clara to boot!

As the performance began, you sat on the floor, back to the crowd, slowly rocking side to side and calmly listened to the instruments, and kids singing. It wasn’t until people would applaud that you’d scream - and LOUD! With headphones on! Clearly you’re more of a fan in the ASL version of applauding by shaking your hands in the air. Duly noted.

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With the show coming to a end, you were all grins and giggles in the car, as you were in a comfortable surrounding and we were headed home for the night to prepare for tomorrow’s activities.

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Next up Clara’s Crafting Birthday Party!

Now having not been to this place before (and hosting a bunch of Clara’s friends), Clara, Gabe, grandma and mommy went ahead early to scoop out the scene.  You stayed behind to ride separate with dad and papa. We all reconnected just in time!

Addie, It was awesome! I can already tell you we will be coming back here again!

With a little explanation of your abilities, they were super accommodating and able to set up your own little station to do the same craft (with a little more room) as the big kids were doing.

You were immediately “all in” on painting your hand (clearly we do a lot of finger painting),

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so daddy jumped in to assist you.

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But truthfully with very little assistance, you were able to complete the project beautifully. Well done baby girl!

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With projects done, cake eaten (funny side note: you hilariously swooped in and blew out Clara’s candles - she really didn’t mind and thought it was kinda funny too) the party was a success and you once again did a great job.

So as the hustle and bustle wound down, and an awesome visit from grandma and papa in the books, we can look back and say we did it Addie, and more importantly, we did it ALL together. One Team, One Dream.

Merry Christmas to all and to all a good night.

Love,
Mom


Elf

Dear Addie, 

This week we had yet another “first” in our family, we all headed out to see a musical theater performance at a real deal theater! Being very big supporters of the arts, this was something dad and I had been looking forward to for quite some time, and what better show to see than our favorite Christmas movie on the stage - Elf!

Now with your extreme sensory issues being even a bit more escalated (I know who knew that was even possible?!) as of late, we knew this was probably an unobtainable vision under normal circumstances, but since it was an Autism-friendly performance, we scored!

You see Addie, autism or sensory- friendly performances are a fairly new (and awesome) concept. They are designed to create a genuine performing arts experience that is welcoming to all families with autistic children, or other disabilities with sensory sensitivities.

This particular event was sponsored by the autism society of NC and UNC Health Care, and if I do say so myself, this dynamic duo did an amazing job!

In our little autism world, just the thought of a new situation can cause great anxiety and distress. The more information we have to prepare ourselves ahead of time dramatically helps increase our odds of a successful outcome. It doesn’t guarantee success, there’s still that whole predictably unpredictable lifestyle you embrace, but it can help greatly.

So, you can imagine my delight after purchasing the tickets when I received an email with a guide to making our autism friendly performance the “best possible experience” for you and our family. Normally if I had purchased tickets for a show maybe daddy and I were going to see, I might get emailed a receipt. Here’s a thought, maybe they should start sending out “best possible experience” emails for each and every show! I can see it now - thank you for purchasing tickets! For your best possible experience, you should use Uber and enjoy a nice dinner with your spouse before the show. Ah yes great suggestion DPAC!

Anyway, back to my email.

This email contained a social narrative story for the day of the event, explaining the process with pictures from start to finish! Literally from driving to the theater to applauding at the end of the show. Super helpful for kids that have never been to a theater!

As if that wasn’t awesome enough, it also included a video guide of the theater, character guide of the musical, and the cast sound track. Preparation at its finest!

Let’s do this!

Dressed in our best fun, yet comfortable Christmas attire, backpack full of snacks, and no diapers or pull-ups (yes, I only realized this gem of information after we had arrived), we were off to the theater and eventually praying this one pull-up was going to last us through the whole show! Here goes nothing! 

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After an easy (well relatively easy, you still complained a bit because we had to enter the facility in one line and couldn’t just rush past everyone like you were some VIP celebrity and the bouncer knew your name) and quick check in, we were each handed a small bag with complimentary sensory friendly fidgets toys - Clara and Gabe were excited that they even scored a bag as well. I mean seriously ALL kids love fidget spinners right?!

So far, so good!

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The whole theater was swarming with very calm and friendly staff as well as trained volunteers, many of whom were professional autism specialists assisting the event and house staff. As if that wasn’t already awesome in such an environment, the DPAC even went above and beyond and held sensitivity training sessions for the theater staff and the cast! How cool is that?!

Maybe we are VIP after all?!

Feeling like we had already climbed a mountain making it in the building, it was time to find our seats.

Ok now having been to the DPAC myself a few times I only noticed today how incredibly close the rows of seats were together. I think that was only the case because on this day I was with you and you were taking in all your surrounding, stimming with excitement, causing you to continuously jump up and down like a Mexican jumping bean - kicking the chair in front of you repeatedly.

As a side note: I honestly felt bad for the lady in front of us, but she never said anything. Perhaps she closed her eyes and envision she was in one of those vibrating pedicure massage chairs?! Or more likely, she just understood because clearly we were all at the same show for a reason.

At this point we decided to break open the bag of fidget toys to attempt calming some of your jumpiness. I reached in and pulled out the fidget spinner, held it in my fingers and gave it a good spin! Then I said “Look Addie! Spin! Spin! Spin!”

Let’s just say mission accomplished, we traded the jumping for spinning as you immediately popped up from your chair and began spinning in circles (shockingly well if I do say so myself, especially for such a cramped amount of space). I reached into my bag of tricks from home and pulled out a few pink squares (starburst) to redirect your attention to sitting again. Pink squares for the win!

We were finally seated and somewhat still just in time because the show was ready to start! Not like any other show, the lights were only just dimmed and there was a good amount of chatter and noises that could be heard all around.

As the opening scene began, a love/hate relationship was born with you and this experience. You wanted to hear all the music, but the speaking segments still presented a auditory distress when a singular voice was heard and nothing else. Unfortunately, not even headphones seem to be helping with this today. You made your displeasure very well-known and started kicking the chair in front of you again. Fully aware we were in a safe environment to work through such distress, there is also a fine line on how far to push before meltdown mode would commence. Daddy asked you if you wanted to go for a walk and you said “walk - yes” so out you went having only made it about 10 minutes and one song into the show. Hey, baby steps Addie, baby steps.

Now lucky for us, in the lobby there were numerous quiet activity areas set up for exactly this type of situation. Daddy said you guys hung out in those areas for a bit before asking for “Santa Clause” which meant you wanted to go back in. You came in and out a few more times (standing in the back by the door) and this was all very acceptable activity for this particular show.

We had made it to the intermission and so far, we labeled this a success. I mean we were still here so that was good, and your pull-up wasn't sagging between your knees - additionally positive!

Now speaking of that pull-up, it was time to use the potty! It’s funny sometimes the most random things remind us of how far you’ve come. Addie there was a time you wouldn’t dare use a public restroom because it was far too loud, and the flushes of the toilet would obviously come unpredictably. I mean seriously is it really too much to ask for synchronized flushing people?! Another life lesson here kiddo - the world doesn’t necessarily cater to your every need, so I’m glad we’re over that! Now if we could be over the pull-up thing sometime soon that’d be cool too Ad, just saying...

 With using the potty behind us, it was time for washing our hands. Not to disappoint (predictably unpredictable) you decided - hey why not wash my face as well?! As you suds up your hands then proceeded to rub the soap all over your nose and cheeks. Ah yes, nothing like a quick bath at intermission. Isn’t that what the ladies mean when the say they are going to the ladies’ room to “freshen up a bit?” Clearly that’s code for take a tubby, right?!?

Ok so good news, now your super clean and the pull-up is still holding strong! Score! We were ready for the second half! Let’s try this again, round two!

Once we headed back in, we noticed the top row had a few extra empty seats. The significance to this? It seemed that the top row was handicap accessible and contained more room between the rows which, for us, could result in less seat kicking. I know it’s crazy to think not everyone is interested your version of a massage chair, but this seemed like an opportunity we shouldn’t pass up! So with confirmation that these seats were empty we relocated here for the second half.

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With much of the same love/hate relationship in the second half you were in and out, but collectively stayed about 20 min. Another success in our book.

So, this week we conquered another first of seeing a musical theater performance, as a family, in some place other than a school auditorium. While it wasn’t without some challenges for you, everyone had a great time and without question we’d do this again! Christmas miracle? Perhaps. It truly is the most wonderful time of the year.

Great job Addie!

Love,

Mom

That Kid

Dear Addie,

 

This week I waited patiently, as I do every day, for your teachers to bring you out of school at the end of the day. One by one, your classmates slowly emerged from the building, but on this day you didn’t follow.

Hmmmmm, confused yes, but then I thought maybe it was simply that you needed a change of clothes as a result of a potty issue - that wouldn’t necessarily be out of the norm. Unfortunately, today that wasn’t the case. I made eye contact with our beloved Teacher Assistant Ms. Heather, and her face said it all. She motioned me closer and said it’d be best if maybe I went inside because you were having a pretty rough day.

Addie today was not a good day, today you were unfortunately “that kid.” 

My heart sunk as I made my way into the school passing all the kids carrying their backpacks happily chatting with their friends as they headed out to the buses. The thought of listening to you have a conversation with a friend or effortlessly jumping onto a bus to get home - these are things we hope one day will happen for you too, but not today.

While you are never less than anyone else my dear, we are always surrounded by constant reminders that you are different.

I turned down your classroom hallway to see your teacher, with a flushed faced, teary eyed version of you making your way towards me. Today was not a good day indeed.

You looked completely spent. Your behavior today was so out of the ordinary for even “MADdie,” that the teachers recorded it for us to see. To say you were struggling would be putting it lightly! The agitation escalated as the day went on, and by the time afternoon came and you were asked to simply color a number 5 on a worksheet, you had finally had enough. You erupted with anger and frustration.

Screaming, crying, throwing and pushing your chair to the ground, your whole body was tense and ridged. All this over a number 5? What was going on? They knew you weren’t hurt, not hungry either - you had just eaten lunch, something was angering you but super sleuthing was getting everyone nowhere. You were exhausting yourself by the minute with rage type behavior. Truly heartbreaking to watch. At the end of the video my heart officially broke as you simply laid your head down on your desk defeated by your own emotions as Ms. Heather gently comforted you by stroking your hair. While this was all very sad and difficult to watch, you couldn’t help but take notice to the calmness and patience your teachers seem to possess in all this. If we can find beauty even in the worst situations, that was simply beautiful and very reassuring as a parent (and to you too I’m sure).

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While I was surprised by your extreme actions on this day, it’s definitely no surprise that you've been struggling now for quite some time.

You see Addie, this journey is like a giant game of chance or trial and error, but the scary part is that it’s not a game, it’s your life, and mommy and daddy are moving all the pieces. No pressure, right?!

The education is endless, the nights are often sleepless, we try anything and everything because as parents we do whatever we need to do to help our children. Different diets, medications, oils, therapies anything from holistic to medical because we just want you to live your best life with ease and not struggle in your own skin. Is that really asking too much?!

It’s moments like these that I feel like someone kicked my feet out from under me and pushed me into a dark hole where I’m trying to climb out of again. Things we were working towards - airplane trips, restaurant dinners, family movie nights at a real theater - it suddenly seems unobtainable. Simply out of reach in our dark hole.

You were “that kid.” The one that just needed more. More attention from your teachers, more space, more reassurance, more in so many ways. The worst part, I didn’t have any answers for them as to why this was happening and more importantly, how to make it better. I had nothing. 

We came home and you spent the next hour decompressing on the swing in the backyard. You knew what you needed, but we still had no idea how we got here today.

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You see Addie, this journey tests us almost daily. Someone blowing their nose, or the seam of a sock can send the whole day down the drain in a matter of seconds. While many will show up on this journey and claim that they have the answer to fix it all, the truth is there is no one size fits all approach to easing the stresses of the journey we walk.

Ironically, I read an article recently about “that kid.”  You know, the one that the other kids come home and say “XYZ was naughty in school again today,” or describe how socially awkward they are. It went on to talk about how we shouldn’t be quick to judge “that kid” because they are probably trying really hard and are struggling with not only outward distresses but internal ones as well.

I’m sorry this was how this week played out for you baby girl, but we will continue to take deep breaths, and find grace in the fact that tomorrow is a new day, while mommy and daddy will continue to look for those much-needed answers.

Remember Addie, Menzo’s don’t give up!

While I question myself quite often, there are a few things I know for sure. Even when you are “that kid” we still love you the whole world full. Even when you are “that kid” you have a whole team of dedicated teachers that are fiercely committed to helping you work through it. Even when you are “that kid” we all know that sweet, smart, amazing, funny girl that is still inside you.

We all have bad days, sometimes even weeks Addie, but we should never let those moments define who we are.

Deep breaths baby girl. We love you. We’ll get through this together. 

 

Love,

Mom

 

 

Say "Cheese"burger!

Dear Addie,

This week we dove head first into the Christmas holiday season!

Ok, so we’ve actually had the tree up for a couple of weeks now, but we we’re all in on everything else! Funny gnomes and elves adorning our tree, stocking are hung, lights outside! You even proved your great memory association by asking for snow as soon as the tree was up - “make a snowman?”

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Addie while I love that you think I’m the most magical person on earth, and it was also a very welcomed change from hearing “make a shicken” or “make a taco”, the truth of the matter is I really can’t make snow just appear (nor would I want it to for that matter - although I’m sure there’s some fancy Pinterest recipe but still?!) just to make you a snowman. Soon Addie, soon! Surely it will snow at least one day this year.

With the house all set in the festive Christmas spirit, next up was one of my favorite things to do - our annual holiday photos! The time of year when we document everyone’s cuteness and attempt to capture a good snap shot of just how much everyone has grown in the past year.

Operation Christmas card photo... and go!

Let’s just say you didn’t share the same excitement for this day. Your commitment level to this whole process was pretty non existent, and having to get a good hair brushing in made you all sorts of angry - cue MADdie paying a visit, and we haven’t even left the house yet!

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You were so angry that even our “go to” bag of tricks did absolutely nothing. Dad decided it’d be best if he drove you around the block while I finished getting Clara and Gabe ready.

With one quick trip around the block, the rest of us were ready to go, and all met up with you and daddy in the van. Still pretty noticeably mad, daddy thought maybe you just needed to eat (or maybe he was just hungry?) and said “Addie do you want a cheeseburger?” to which you quickly replied “a cheeseburger, yes!”

Mark it Ad, you were “hangry!” I mean clearly that’s the snack of choice any parent would give their child who is all clean getting ready for photos - I suppose ketchup is red so it does look somewhat festive right?!

Cue Operation Wendy’s... and go!

Three cheeseburgers down, covered in breadcrumbs and ketchup, you were way happier now! Success! Now to get cleaned up (again) and get these pictures done!

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The sun was perfect so we went to a beautiful park not far from our house.

We walked a ways out, and I laid a blanket down instructing everyone to sit and smile. I was a little worried about snakes creeping in on us next to the tall grass, but I’m happy to report this didn’t happen. After few minutes of trying to get ourselves together,

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Clara sniffed her nose due to allergies. You were not pleased, and lashed out (Clara was ready to defend herself, and did - this was not her first rodeo).

I love Gabe. Clueless of what’s happening behind him.

I love Gabe. Clueless of what’s happening behind him.

That’s when we realized we needed to move on to another location.

Clara sweetly offered to grab the blanket then all of a sudden she let’s out a big scream! Ahhhhhhhhh! I immediately thought it was the snakes! Nope. Under our blanket was a dead turtle - no we didn’t kill it (it looked to have passed on a while before), but you’d think I would’ve seen that when I put the blanket down. Insert my tunnel vision to get this done! RIP turtle.

This being our 8th year of coordinating outfits and mommy and daddy making silly faces, noises and perhaps a few bribes to document just how far you have all grown each holiday season, I have to admit this year was noticeably different. In the past, we would place you in the middle of Clara and Gabe and someone would be holding you still and in place so we might snap the perfect picture. This year nobody held you in place, instead you grabbed onto Gabe. Clearly you thought he was the one who needed help sitting still this year!

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But in all seriousness, you were in your element, nature. And you proved to be very much a big kid this year. Yes, we were all being goofy, but you followed direction far better than years past and nobody had to pin you down, so everyone won there. Yay!

After sifting through about 800 photos, we managed to get a handful of funny, beautiful, and precious memories that we will surely tell our grandkids about one day.

So the day didn’t start off super great, but say “cheese”burgers and it all turned around!

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Great job big girl!

Love,

Mom

Time For Us

Dear Addie,

 Parenting is hard. Whether you’re raising neurotypical or special needs children, there really is no go-to manual on how it’s all done. You can read all the books, look up every parenting website out there, and accept all the advice given from other parents, and still not even come close to being prepared for how it’s all done.

Why? Well, no two children are exactly the same.

We all have these amazing visions of just how relaxed, cool, and fun we will be as parents (in our pre-parenting days). We may have even uttered to others “when I have kids, they will never do...” (side note: my advice to anyone preparing themselves for parenthood - don’t be this person!).

Eventually you come to realize (especially if you have multiple children) that no two children are the same, and your kids just might do all those things you swore they never would. Kids are fun that way.

In addition to that, if you have special needs children, the stress and complexity of simple care and everyday needs takes things to a whole new level. You will learn (practically overnight) a dictionary worth of big fancy words that correlate to your special needs in some way or another. You will even learn words that correlate to those that don’t have special needs like neurotypical (never thought in a million years that I would use that word as much as I do in conversation now).

With our brains and our bodies stuck in overdrive all day, every day ends with complete and utter exhaustion. Just to add a little more fun to this parenting journey, comes a healthy dose of free, unwanted judgement from people everywhere we look related to decisions we make - never mind that we have spent literally endless hours researching the subject. Yes, I’m sure you, random Target lady absolutely know more than I do about what’s best for my kid. Thank you.  Your dirty looks and heavy judgmental signs are super helpful. 

It’s safe to say anxiety is high, and we can hit every emotion from happy, sad or down right mad on a daily basis.

Now don’t get me wrong there is an amazing love and joy that comes with parenthood as a whole, but the special needs journey holds some scary statistics that can haunt us if we let them. The divorce rate is notably higher among special needs families. The demands are more, the difference of opinion is more prevalent, and money can seem as if it's being stacked up in front of a window with a fan on high for therapies not covered by insurance, along with special diets and equipment just to name a few.

Time for ourselves almost permanently takes a back seat. We slowly begin to lose sight of our once full of life ready to take on the world selves. We may catch a glimpse in the mirror not even recognize our own reflections. Growing old together was always mommy and daddy’s intention - it just sometimes feels as if we’ve made it here faster than we planned!

When burning the candle at both ends, with work and life, it can feel like mommy and daddy haven’t had a conversation of anything but being parents in a long time.

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While this is and will always be our greatest and most important accomplishment (bringing all three of you into this world), there is certainly more that used to define us.

Addie, we refuse to become a negative marriage statistic, so we give it our best shot at carving out mommy and daddy time whenever possible. Let me tell ya Ad, that’s way easier said than done because it takes a village of very willing participants to keep our controlled chaos moving!

Well, much to our surprise the universe must’ve known it was time for us to take a parental break and sent some luck our way. Daddy won contest! I know crazy right!? A Four Seasons Scottsdale Arizona Golf trip! Yep I think even daddy didn’t really believe it and thought it was spam when they announced he was the winner! So exciting!

A side note: the universe must put a cap on winnings because we tried the lottery and that didn’t pan out the same ;).

And for that matter, for as many years and multiple times a week I've been shopping at target, not once have I ever won a $5000 gift card from taking a survey. Hmmm yet I keep shopping there...well played target.

Back to the trip...

Having won this amazing trip back in April, the way our life goes, it was like choreographing a well-orchestrated concerto to actually pull this off in November. Yes, November. In all, this includes a team of loving, willing and able people to manage the chaos for us while we were away.

With about 8000 reminders and notes of schedules, pickups, drop offs, medications, food likes and dislikes and etc...

We were ready!

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Scottsdale Arizona here we come!

We spent the next four days just mommy and daddy. We missed everyone like crazy, but it was nice to have a little break from changing diapers, driving people from here to there, barking dogs or preparing dinners.

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We filled our time instead with mimosas,

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fancier dinners than Chili’s,

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massages and outdoor adventures.

You see Addie, in our life, schedules and structure is very important. It can get so scheduled though, that it feels like mommy and daddy just high five each other in passing as we move from one thing to the next. So, this break gave us time for each other, uninterrupted, undivided attention to one another.

While I know this isn’t the norm of getaways for parents that might need a break, I’ll admit we truly enjoyed every second of it!

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We returned refreshed, rejuvenated, and reminded that our love is strong and we can weather through the tough stuff together for as long as we both shall live. Because the dream team once started with just us.

 

Love,

Mom

20 Years Or So

Dear Addie,

 Before we found ourselves on this journey, a once younger version of myself never thought about some of the things that now consume my days. Like how many days can you really efficiently function without sleep, or can a kid survive solely on tacos and popcorn? For that matter, is popcorn considered a vegetable?

Once we became parents, our lives changed. We found a new, deeper -almost indescribable love for all of you. We learned rather quickly the strength of patience (and how it is tested almost daily), and a deep sense of responsibility combined with a heavy dose of worry. We worry about many things, but mostly about guiding you all in the right direction to learn what you need to know to become happy, healthy and one day independent adults in our society.

Welcome to parenthood - no pressure.

You see Addie while most parents can relate to all these things, our journey includes a path that not many have to follow. It can sometimes seem rather dark as we often don’t understand exactly what we are looking for. The author of Autism From a Dads Eye View explains it quite perfectly...

“Every parent plans to raise their child for 18 years. Set them free for 30 years, and then hope they come back to help them face the final years of their own life.”

“A special needs parent plans to raise their child for 60 years, and while doing so also has to prepare for the other 20 years or so after they themselves are long gone...”

Hit the nail on the head there!

So while we navigate our day to day challenges like sleep, behavior, and sensory distress, it’s never far from our minds of how you as adult Addie will navigate the world when mommy and daddy and no longer here and able to help.

Luckily for us, and I say this a lot, you have hands down the very best siblings anyone could ever ask for! Clara and Gabe (if I’m being honest, it makes me a little sad that our 12 and 10 year old can sense this anxiety in me, because they should be just enjoying childhood) have promised that they will always be ready to help you however possible if you should ever require or need anything as you get older. While that makes my heart soar with love and happiness, naturally as we all grow older we look forward to a life of independence and who’s to say you won’t want and deserve that too?

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Which brings us to today, trying to balance life in the present and the future. Where is that dang crystal ball? For as daunting as this seems and is, there is hope.

We were blessed last year to stumble upon this amazing little camp called 3 Bluebirds Farm (formerly 3 Irish Jewels Farm), and it was here that we met an amazing woman (the director of the program) that understood us to our core. We also were introduced to a wonderful summer camp program that you truly enjoy. But that’s not all, it also houses a vision that softens the worry and brings light to that distant dark path.

The goal here at 3 Bluebirds Farm will offer a person-centered home to adults with autism where they can thrive and continue to grow and learn. The tranquil agricultural setting will provide a well structured residence with safety, cohesiveness and serenity. Well trained staff who are familiar with the resident farmers’ special needs will assist the farmers in learning and discovering new skills, encouraging them to reach their fullest potential. In turn, the resident farmers will experience appropriate and rewarding work, along with organized leisure time and social activities.

As a community within a larger community, 3 Bluebirds Farm will strive to educate the general public about autism awareness and will invite community members to volunteer in farming activities and special events. 3 Bluebirds Farm will collaborate with the many universities and schools around the Triangle and provide internships, classes, volunteer opportunities, as well as educational workshops and support groups to the general public.

Their long-term goal is to create a pilot program in the Triangle of NC, nurture it and grow it to the best it can possibly be, and then open more around the state, and then around the country. Because they know that they will be at capacity within just moments of opening, and there is a need for hundreds more of 3BBFs around the country.

I think it’s pretty safe to say we support this vision 100%, but with this comes the need for funding to make it all happen.

Insert the annual Bluebird Ball and a bonus night out for mommy and daddy - yes please!

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It’s here that mommy dresses like a princess (if only for one night) and our loving community raises money through auction artwork - created by all of you and your teachers at camp. Side note: We were once again the lucky recipients of some one of a kind art pieces for our home!

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It is a night where those of us living this journey come together with those who passionately support our community and raise money in an effort to make a better future for our loved ones like yourself. Truly a beautiful evening.

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I’m happy to report it was once again a wildly successful night of education, funding, laughter and love - and I got to wear a princess dress :).

So Addie, while we find ourselves thinking of things we thought we never would, we enjoy it because it’s all for you.

We love you so much.

 

Love,

Mom