Every evening, following, dinner, and Therapy- After the hustle and bustle of the day finally comes to a close, Andy, Leo, and I head upstairs to unwind before bed time.

As is the case with many children with Autism, Leo has his routine and remains closely tied to that familiarity…

I chuckle as my boy searches the room for my pajamas, handing them over to me with eager anticipation, intently prompting me to change so that snuggle time with Mommy and Daddy can commence.

Barreling in between Andy and I in our bed, Leo giggles with a sense of contentment and relief from all expectations of the day.

Holding out his hands for “scratches,” or simply lying between us, watching his tablet, he revels in the safety and comfort of Mom and Dad…

After a shower, and teeth brushing, Leo heads to his room, glancing over his shoulder, making certain both Andy and I are following him in close proximity.

A few more “scratches” ensue before Andy kisses Leo’s cheek-

“I love you Best Buddy. Sweet dreams. See you in the morning,” Andy recites…Leo sweetly echoing each phrase…

I stay behind a little longer, until Leo has fully entered dreamland…

In a few short months, or less, we will have a new little one to include in our nightly routine. There is worry…anxiety…guilt associated with changes that will inevitably occur, and how it will all affect Leo.

Routine is such a huge part of Leo’s daily life- at times, I don’t even realize how much we rely on routine, until I stop and truly examine the ins and outs of our day, and how much consistency is incorporated simply by way of habit, and learning what works and what doesn’t for our boy.

We will continue to learn and grow as a family of 4- it will undoubtedly take time, patience, and a whole lot of trial and error, but one thing is for certain, there will be no shortage of snuggles, and “I love you’s” to go around.630CCF09-D456-4734-A07A-4857256B7368.jpeg

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“I pray she’s okay…that she doesn’t face the same challenges as Leo,” I expressed to my Mom, a couple of months ago, as we were driving.

Pausing for a moment, silence palpable as I bit my lip, hesitant to continue on…Afraid to allow my thought a voice…

“And if she is okay,” I said, my words already cemented in guilt…

“If she’s okay…maybe she can take care of her brother when they are older.”

“I know,” my Mom responded quietly. “I know.”

My sister, Victoria, has special needs. Growing up, as my parents became aware of her challenges, and the extent of her medical impairments, I knew early on that part of my purpose was to help in some way- eventually understanding that later in life, I’d assume responsibility for her care.

There was never a conversation, or pressures by my parents to cajole me into taking on this role. This reality, was simply always inherently built into what I saw for my future, void of any alternative…

But, as my Mom and I drove down the road, I could sense the depth of her understanding, while I expressed fears I had for Leo, for this baby…of never wanting to impose that expectation on her, or place pressures on her to assume a caregiver role.

That her life…Her future…and what she will come to view as her purpose may not mirror my own.

My parents, I know now, felt these same fears…that same guilt.

And my mom’s gentle murmurs of acknowledgement yielded a sense of solidarity between us, cradled in that fear…and doubt…and guilt…

Our experiences as parents of special needs children, all vastly different, yet so boldly similar.

Some may find it a bit premature to even consider the possibility that Leo will require a caregiver as he enters adulthood…But this reality, however painful, approaches quicker than one might imagine…

Not long before speaking with my Mom, Andy and I had a conversation about guardianship- about how many parents with disabled children have to apply for guardianship of their own child so as to ensure that they will be able to make decisions on their behalf, if the child is unable to do so on their own, once they turn the legal age of 18…

I expressed to Andy that we may have to do the same for Leo as the time neared, and we should expect that he will be living with us well into adulthood.

“That is a possibility,” Andy agreed, before continuing on…

“But, he’s only 8. A lot can happen in 10 years. We don’t know yet…maybe he will be more independent than we think.”

Sighing deeply, I turned my head in bitter defiance of what I perceived as his naive, and unrealistic optimism…

Yet, all the while knowing he was right…

Knowing that Leo’s story hasn’t been written yet, and that preparing for what could be, doesn’t mean shutting out challenging goals, and existing hopes and dreams for Leo.

As I am quickly nearing the 3rd trimester of this pregnancy, I hold onto so many hopes and dreams for both of my children…

Although grandiose, somewhat superficial dreams, such as one of them “becoming president” or “an astrophysicist” May have long since passed…

For my girl, I hope that she grows up loving her brother. That she is kind…empathetic…

I hope she understands and appreciates how special and unique he is…

And I hope that she will always follow her dreams…whatever they may be.

For Leo, I hope that he loves his sister…that he always holds onto his sweet spirit…that he continues to teach the world about the importance of diversity among us…

And I hope that he will always follow his dreams…

Whatever they may be.1FA4AB42-03BB-448A-9823-AF6E74B8DD1D.jpeg

Following a difficult week for my Leo, I waited anxiously at pick-up yesterday, hoping for some confirmation that we were moving in a positive direction.

“I had a good day, Mom,” Ms. T prompted, before turning towards me-

“We all have those days,” she stated, referring to Leo’s challenges the previous week…

“We work through it…that’s why we’re a team.”

As a special needs parent, the words, “we are a team,” provides so much necessary reassurance, as we strive to have the ability to work collaboratively with the school, and teachers to create the best possible environment for our children…

Friday afternoon, as we were driving home from school, we had yet to exit the school’s parking lot when I noticed Leo’s eyelids flutter, quickly succumbing to sleep. Gently waking him as we arrived home, he stumbled sleepily into the house. And rather than hearing the immediate sound of the refrigerator door opening, as it is customary for Leo to seek out a snack upon returning home from school, instead were the sounds of his little feet, heading up the stairs to his room- a trail of socks, shoes, and clothing strewn along the hallway as I quietly followed, and found my boy, curled up underneath his covers, fast asleep.

And so he slept. And slept…and slept some more. He slept through dinner, which is nearly unheard of for leo.

He woke up late that night, requesting a snack, some tablet time…

And returned to sleep.

Waking the following morning with a sense of calm, which seemed to have replaced the tension and uneasiness of the week.

Irregular sleep patterns are common in children with Autism, but had become increasingly inconsistent this past week, even by our standards.

It had been a challenging week for my boy, for a variety of reasons, I’d surmise. But, I’m grateful his body allowed him the chance to gain the rest he so obviously needed.

Hoping that sense of calm follows Leo into this new week…A561A364-9F4E-4062-A4E0-50B904E9CC27.jpeg

One of our main goals, especially as Leo becomes older, is to promote and encourage his independence in a variety of areas, such as self-help and self-care skills…

In the last year or so I’ve noticed enormous growth in Leos ability to initiate in these areas, and in doing so assert and advocate for this newfound independence.

There are still many areas that are indeed a challenge but that initiative shines through, often times when we least expect it.

“Shoes on.” Leo requested, this past weekend, staring intently at me while handing me his shoes and socks he had proudly fetched.

Responding to his adamant plea- “Yes, babe. You’re going to the store with daddy in a little bit…you need to get dressed first, though.”

Skipping up the stairs, shoes and socks still in toe, I assumed Leo was heading to his room to wait for me to come dress him for his outing.

Yet, to my surprise and glee, he re-emerged, nonchalantly, a few minutes later, dressed from head to toe, as if he had been doing so on his own for years.

He remembered everything- underwear, shorts, a shirt, socks and shoes…even grabbing his hoodie once downstairs, and with a few trial and error attempts, successfully put it on himself…

A few pieces of clothing were backwards or inside out, but, in the grand scheme of things, does it matter? He dressed himself! A full ensemble from top to bottom. By himself!

Not only did he dress himself on his own, but his receptive language as well as problem solving skills were also hard at work in this situation, fully understand the First Then scenario- First, you need to get dressed, and Then, you can go to the store…

Leo is 8, but as many parents of children with special needs understand, there is an innate part of you always, that is inclined to step in…to lessen the challenges for them…to make things easier in a world where so many elements can be a struggle.

But, I’m learning, from Leo, that there are moments when it’s okay to hold back…to allow him the opportunity to stumble along the way to success, or “failure” (although we never view it as such)…to ease my grip just a tad in order to give him the chance at more independence.

It’s not always easy. But, moments such as these make it oh so worth it.19092C5A-729B-448C-BDC2-3BBED013A803.jpeg

Happy 65th Birthday, Dad…

Mom found this photo, yesterday…of Gladys and I, 30 something years ago. I know how much your Grandmother meant to you here on earth, and although I wish we could celebrate with you today, I take comfort in knowing that she, and others who have since passed away, surround you in Heaven on your Birthday. Love you, always.2C909343-B1AF-4F94-8959-6C96752291D4.jpeg

Sunday smiles from Mr. Leo, as he helped Mommy and Daddy run errands, followed by lunch, and a trip to a local amusement park.

Pushing the cart…Placing items on the belt…Waiting…Not wandering…Tolerating crowds/loud noises, etc…

Leo has worked so hard through the years in order to reach this point- I have to remind myself on days like today, when he appears to be at such ease, that the challenges he has overcome still linger amidst his sweet smiles…

That progress is sometimes masked by those challenges…

But for today, his progress, and beautiful smiles shone bright- and I am grateful.

FD7E1FE9-52D9-45DB-A37F-0F54333A00FE.jpeg

For every parent with a child on the spectrum, I think there’s a moment of realization that occurs along the way…

A moment of clarity that hits you, despite any nagging pings of denial attempting to creep in.

For Leo, there were signs…probably from the beginning- some were small, and more easily brushed aside, and others infinitely more obvious.

But that moment for me- that moment of clarity came in the form of something so mundane, most parents of typically developing children may not give it a second thought.

My sweet boy, age 3, language/speech all but vanished, sat happily on the carpet with his toy cars. He loved these little cars, especially the Sesame Street themed vehicles with characters attached. I sat with him that morning, attempting to play alongside him…modeling the sounds, “vroom vroom” as I moved the cars back and forth…

As quickly as he could manage, Leo swept the cars away, returning them to his meticulous line he had created with such care. No interest in “appropriate” play as some might refer to it- only in his pattern of lining up each car…scooping each one up individually, placing them back into their bin, and repeating the process, each toy vehicle landing in the identical spot as before…over and over again, the repetition was glaring…

And I knew…in that moment, I knew.

Yesterday, during afternoon pickup, Leo’s teacher left me with a sweet anecdote from the day; explaining that during structured play, she’d proudly observed him playing with toy cars, manipulating their movement in a driving motion as he vocalized, “ready, set, go.”

Little did I know 5 years ago, when I allowed the tears to admittedly fall, that there would be moments on this journey, equally as powerful…and that the joy, and hope embedded in these moments would far surpass any sadness and worry I felt that day…which seems a lifetime ago.

(Photo is of Leo and his teacher, working together to help paint his school’s mural).

The day I was scheduled to take Leo home from the hospital following his birth I was informed that he in fact, had not passed the Hospital’s car seat test, which is generally administered on preterm babies to ensure that they can travel safely upon discharge.

Having not anticipated Leo’s arrival 5 weeks early, I was advised to purchase a different type of car seat, more suitable, and safe for Leo’s small stature.

My mom, who stood beside me, holding my hand during my c-section- and who’d spent the past 3 nights in the hospital with me, taking turns feeding and soothing my boy who’d already decided he was none too fond of sleeping, grabbed her purse and headed out, exhausted, in search of an appropriate car seat for her grandson.

A few hours later, she returned, visibly fatigued, but car seat in tow, along with a Babies “R” Us shopping bag.

“I saw this cute outfit for the boy,” she stated, handing me the bag for further inspection.

Pulling the tiny garment out I stared longingly for a moment…letters printed neatly across the onesie portion of the ensemble…forming the words…

“I love Daddy.”

A few moments of quiet passed, until my mom, eyes widening, looked towards me.

“I was just so tired…I grabbed it without noticing what it said,” she explained, apologetically.

Smiling understandingly, I set the outfit to the side, as we both let out a brief chuckle…a bit of relief, in a way, I suppose, from the stress and exhaustion which had consumed us over the previous days.

With time, the infamous onesie was packed away, occasionally resurfacing, along with that oh so familiar “sting”…one that dissipated over time as what was once a negative reminder, became one of gratitude and love for the incredible support system which had stepped up and filled that particular void…

My Mom, and Dad…siblings…and an abundance of family and friends who simply adored Leo from the very beginning…

When Andy and I learned about this pregnancy, I spent one particular morning soon after scouring the aisles of Target, searching for a very specific item, disappointment lingering as I left empty handed.

“Look what I found,” Andy proudly professed the following day, as he returned home, holding a onesie…just like the one I’d been searching for the day before.

He knew from the beginning she was a girl. No doubts in his mind…While I’d assumed, erroneously, our baby would be a boy…

And when I mentioned to him one day, before we knew for sure, that I’d hoped he wouldn’t be disappointed…that some men might prefer a son, he quickly responded,

“I already have a son. She’s a little girl…we are supposed to have a girl.”

It’s fitting I suppose, this is the very first piece of clothing purchased for her…

As I watch him put together her crib…as I watch him love our Leo…our son…his boy…

Leo wasn’t able to wear a onesie like this one, at the time…

But he has a Daddy now who loves him, and who he adores.

The way it was supposed to be…