When my daughter was a baby, I vividly remember the sadness I felt in receiving the developmental milestones handouts at her routine pediatric checkups. Colorful sheets with indications of what children should be doing at certain stages were stark reminders of how far behind we were.

The expectations printed in black and white only brought me heartache and grief. Each item that we couldn’t check off felt like a firm punch to the gut.

Delays and possible “nevers” felt heavy in those early days. At each appointment, I would review the sheet given to me by the nurse, feeling that familiar sting, all over again.

Holding back tears, I would read all the behavioral and physical checkpoints at which my daughter had not arrived. Milestones like holding her head up, crawling, waving “bye-bye”, saying her first word, and taking her first independent steps seemed so very far out of reach. They were miles away.

Thankfully, as my daughter grew, I realized how unimportant those checklists were.

At every visit, I would quietly wish that the nurse would just forget and skip over the routine of handing me a copy. In time, I learned to simply fold that sheet of paper and tuck it away in our diaper bag. Numbers didn’t matter. The “shoulds” became irrelevant. I knew from her first breath that my child was a miracle and that her being here, with her family, was enough. We were on our own course, and she would follow her own path.

With early intervention, a plethora of dedicated therapies, and lots of love, she is a now a thriving 12-year-old.

She began learning to hold her head up at six months.

She amazed us and made us so proud when she crawled at two years. I cried happy tears when she waved “bye-bye” at age 11. It’s magical every time I hear her say “Hey Da-Da”; her first and only words that came many years after the toddler era.

She’s not yet taken her first independent steps, but it’s a goal that we’ll continue to work towards. In the meantime, she takes my breath away with every step she takes with her walker.

I’m in awe of all the incredible feats that she’s mastered. It doesn’t matter how long it has taken to get here.

I’m grateful for of every inch forward, no matter the pace.

Kids are all unique and they will do things in their own time. When my son was two, he wasn’t speaking in sentences or chewing. At 19, his vocabulary far surpasses mine, and he eats whole pizzas in one sitting. He did big things, on his own timeline.

There are many milestones that children with more complex disabilities, like my daughter, will have to work so much harder to meet. Some may not come at all, and I’ve learned that’s ok too. At 12, she’s working on potty training; I couldn’t be more thrilled! She is moving her own mountains daily and she astonishes us with her fierce tenacity and courage.

It’s genuinely a relief to no longer be weighed down and burdened by timelines. They are insignificant in our world. Looking back on the early days, I see how very far we’ve come. This life is not a sprint; it’s a marathon. We’re in it for the long haul. We’ll keep going, inch by inch, and I will never take any bit of progress for granted.

In most rooms that I find myself in, I always feel like I don’t quite belong.

When the conversation is steered towards parenting, no matter the company I’m in, I am always a bit out of place. Anytime I’m surrounded by other parents discussing all the “typical” childhood things, I can imagine what an alien who crash-landed on our planet would feel like. Everything is foreign and I’m lost.

Even when attending support groups with other parents of children with disabilities, I’m not entirely at home; I can’t completely relate. I realize that no matter the degree of a child’s disability, whether it be mild, or more severe like my daughter’s, all parents lose sleep and worry immensely about their child’s future.

We’re all akin in that way.

On the flip side, the medical diagnoses and host of disabilities that I know well are rare and uncommon, even in gatherings of support.

There is one place where I never feel unfamiliar; a place where I feel like my family truly belongs. At our incredible outpatient therapy center, Kidnetics, we are always amongst kindred spirits and people who just “get it.”

Once a week, for three hours, my daughter, Ryleigh, and I spend time enveloped in this joyful world where we genuinely fit in.

Things happen there that I never experience anywhere else.

Last week, as I was pulling into a van accessible parking spot, I noticed a familiar mom pulling into an adjacent one. Knowing that both of our children use wheelchairs, we instantly worried about each other’s convenience.

We simultaneously jumped out of our vehicles to make sure that neither of us had taken the parking spot that the other needed. I wanted to ensure there was room for her son’s wheelchair ramp, as she was concerned at the amount of room for my daughter’s. We both had the intention of exchanging parking spots if needed. Having both experienced the feeling of being in a “tight spot” before, neither of us wanted that for each other.

Mutual compassion was shared, and it was such a warm reception.

As I walk through the welcoming doors at Kidnetics, pushing my daughter, carrying a bulky swim bag, backpack, lunchbox, portable oxygen tank and communication device, I am completely weighted down. Someone always offers help; grabbing the door for us, and I do the very same for any caregiver that I see, trudging in my shoes.

When I haven’t had enough sleep (or coffee!) and I know the bags under my eyes are particularly evident, and I show up dressed in old leggings, no one cares. I glance around and see the equivalent in some of the other parents; we kindly meet each other’s glances in solidarity.

Conversations develop effortlessly there with other moms about adaptive equipment and assistive technology. Autism, Epilepsy, and genetic disorders – all topics of discussion that I’m well-versed in.

This is a place where I can share and reciprocate. The lobby isn’t filled with stares or whispers; it’s filled with acceptance and comradery. No one’s life is strange or weird there.

Children watch each other and it’s obvious that they possess a beautiful trait that most human beings lack.

They don’t see “different” or “less than.”

They only see each other as friends. They only know LOVE. Ryleigh smiles elatedly at every child she encounters. She gets handshakes and she gives high-fives.

They are free to be themselves, completely, and they are recognized and loved for who they are.

Our therapists there work together as a cohesive team to treat Ryleigh. They are an integral part of our village; they are an essential part of our tribe. They understand the highs and lows; they lend support and encouragement through our struggles and our wins. Our group of dedicated professionals puts forth great effort to know my daughter, and they are her cheerleaders.

They see me too.

Generously bestowing knowledge and sharing necessary tools with me to help her achieve success and gain independence.

Every family deserves a place where they can feel at home, like we do at Kidnetics. A comforting place where our children are not only accepted as the wonderful, unique individuals they are, but also CELEBRATED. All families need that special place, where we belong.

Summertime is here. Kids and parents everywhere are reveling in relaxed routines and all the exciting warm-weather activities that the season brings. School is out. A tremendous perk: evenings can finally be enjoyed without the stress and strain of completing HOMEWORK.

Well, at least for some of us.

Homework in my household doesn’t consist of the typical tasks that most 12-year-olds endure. It never has. And it NEVER stops.

My daughter hasn’t spent the past 10 months learning about dividing whole numbers, decimals, and fractions.

She hasn’t been burdened by memorizing grammar rules, parts of an atom, or the beginnings of civilization.

All throughout the school year, during every holiday, and over the course of the summer, we work on mastering subjects that literally impact every facet of her daily life.

While attending multiple weekly therapies, I diligently notate every session.

Her team and I discuss all the ways to implement activities at home to help in developing her skills. Children with multiple disabilities, like my daughter, labor tirelessly in learning to do things that most of us take for granted.

Our daily homework is all about learning the most important lessons; it continues into the months of June and July. We can’t afford to take a lengthy vacation from it.

Navigating her AAC device and modeling vocabulary so that she can have her own voice…

Completing sit-to-stand transfers for strengthening…

Donning her orthotics and using her gait trainer to practice walking…

Working toward the goal of someday walking independently…

Practicing core muscle exercises and OT blowing techniques in our quest to achieve some success with potty training…

This is just a portion of the assignments we tackle together, perseveringly.

My daughter keeps right on working hard and continues her learning into the hot days of summer vacation. I greatly admire her strength and her tenacity.

While the homework of gaining independence and mastering daily living skills continues, I remind myself that she also deserves to take breaks and to be a kid, too.

She needs time to just lounge in her PJs, watch her favorite YouTube videos, and snuggle up with her most cherished books.

These moments are equally vital, for both of us.

Some days, I feel weary and tired. I worry that I’m not doing enough. My back hurts, my brain hurts, and at times I feel inadequate in my carry-over methods. This work is critical, so I dig deep and we push on.

During one of our recent sessions, my daughter’s therapist nearly brought me to tears with words of encouragement, out of the blue.

“She’s doing so well and making tremendous progress. I’m proud of you both.”

It was a simple comment, but in an instant, I realized how important our homework truly is.

It can’t only happen once a week in a clinic. The lessons and the hard work must be carried over into real life. With my daughter, repetition is key. It may take us 500 tries. It may take us YEARS of practice. But we hold on tightly to hope because things will happen in her time. When her eyes light up and I see a method finally “click”…When things finally start to fall into place…When I witness a new skill unfolding before my eyes, it’s absolutely indescribable. It takes my breath away.

A significant goal of mine, as her mom, is to help her achieve some independence and to ultimately make life easier for her. Every second and all the energy poured into completing this meaningful homework is infinitely worth it.

Certain situations that I encounter really take restraint. A whole lot of restraint.

As a mother of a child with disabilities, some things just get me fired up. I can overlook many little things and take life in stride. However, it requires every ounce of self-control within me to remain cool, calm, and collected when people deliberately misuse accessible parking spaces.

These designated spaces exist for a reason; when they are used legitimately, they serve a MIGHTY purpose.

They provide individuals with disabilities access to their communities.

They provide freedom to safely exit a vehicle, at a close distance to a person’s destination.

When I am forced to repeatedly circle a parking lot in search of a spot to accommodate my child and her wheelchair, AND I see cars in them without a legally required disabled tag or placard, all my decorum is lost.

When I watch someone effortlessly hop out of their vehicle to “run in really quick” at Starbucks or Walmart, while taking up a space that someone genuinely needs, my blood boils. Some disabilities are more visible and obvious; some are more hidden. Some disabilities are temporary; some are permanent. In every circumstance, ALL individuals with disabilities have a right to those spaces. Non-disabled people who merely want to avoid crossing a busy parking lot to shop or to cut out a few extra steps to grab their latte do not.

In my town, I’ve seen it happen again and again. I’ve always known it to be an unlawful act, but I never realized the self-centeredness of it until it was my own child who needed the accommodation. I was blissfully unaware of how selfish our society can truly be.

I can really feel my blood pressure rise when people park directly in the blue stripes that accompany an accessible parking space. These lines are called “access aisles” and every precious inch of them is valuable to someone who needs them.

Access aisles are NOT meant for motorcycles to use.

They are NOT an area to conveniently abandon a shopping cart.

These painted stripes are designated for wheelchair accessible vehicles, and they provide space for an individual to transfer from their vehicle to their mobility device. They also give room for wheelchair users, like my daughter, to access their wheelchair ramp and safely exit. I sincerely hope that the majority of those who misuse this space are simply uninformed, and that they would never be so purposefully careless. Sadly, I’ve had people look me straight in the eye as they intentionally parked over into the lines, while I struggled to carefully lift and manoeuvre my child guardedly to the ground.

I have stickers plastered on my van that read “Please do not park within 8 feet.” Sometimes, I feel like they need to be posted in big, flashing neon lights. I have her placard that I hang on my rearview mirror every time we park. I would NEVER use it when she’s not with me. I don’t have the right to do that.

I wish people would understand how tricky and complicated things can become for individuals with disabilities, (and for their caregivers), when they misuse these spots. We must continue to educate and enforce; we hope that citizens take heed. It’s so very simple…Please think of others before you park.

Dear IEP Team,

We’re here to discuss my daughter today. We are grateful for the wisdom and expertise that you bring to the table. We realize that you know your jobs and you are well versed in them. You possess years of experience and advanced college degrees. Your names have distinguished titles following them. However, please remember…as you sit on the complete opposite side of this table from us, her Daddy and I are the unequivocal experts on HER.

You know our child on paper; you appreciate the numerical data reported from her evaluations. Some of you know her as a person, as you spend hours teaching her, interacting with her, and providing therapy services to her. You have extensive knowledge in the field of Special Education. We, her parents, have twelve years of comprehensive experience with this individual human being. While we respect each of your roles, there’s something we really wish you knew.

If you sat on our side of the table, you’d see this IEP meeting through a completely different set of eyes.

You recognize that she is twelve years old and you’ve reminded us, time and again, that she is many years behind her same-aged peers. But, did you know that her birth was a miracle and that she has overcome tremendous, countless obstacles in her life? Can you fathom the strength that she has shown against adversity?

You understand that because of her cognitive delays and orthopedic impairments, legally, you must make many accommodations for her. You surely feel that we ask you for A LOT, and we know that we can seem pushy and hard to please. Do you personally know what it’s like to have a child who depends on you to fight desperately for her? For ALL her needs to be met?

We are advocating for needs that parents of typically developing children couldn’t begin to comprehend.

Do you realize how wonderful she is, and how she spreads joy to all who meet her? Can you see that she is worth every single service and support that we ask for? We hope that you do. She’s truly worth them all, and so much more.

Do you ever wonder how the words you deliver to us in this IEP meeting can sting?Or consider how crushing it is for us to listen to all the ways our child falls short? We know that it’s your duty to relay the cold statistics to us. You share with the group that she cognitively functions on the level of a toddler.

Can you see the tears we’re fighting back? We hope you view us with some compassion. She is our world, and we love her more than you can imagine. We are well aware of all these facts that are neatly typed up in detail, but it still hurts to have to digest them all over again.

Thank you to the team members who are very familiar with her for making us smile.

You help us swallow the lumps in our throats by sharing all the AMAZING things she CAN do. You make sure to tell the whole team about her abilities. You love telling the group how much she loves Taylor Swift and how well she responds to music. Your eyes light up when you contribute that she is very sociable and happy. We know all these incredible things too, and we truly appreciate you noticing.

IEP Team, after this meeting ends, we’re going to continue pushing, requesting, and fighting for all the things our child needs to be successful; everything she needs to THRIVE. We will be diplomatic. We will never back down. Please don’t think that we’re trying to do your job; we’re merely doing OUR job. Our job is to be the very best parents for her and to give her a voice. Please know that we will strive to work WITH you to make school a safe, happy and wonderful place for her.

We know in our hearts that you would gain a whole new perspective, and that you’d do the very same, if you sat on our side of the table.

Sincerely,

IEP Parents

There is a monster that lurks in the shadows, always just one step behind.

It crouches and stalks, silently preparing to strike when you least expect it. You always know it’s there, and you do everything in your power to stay two steps ahead of it.

Epilepsy is a beast that will turn everything upside down in an instant. It is a thief of peace, and it leaves fear, heartbreak, and total chaos in its wake.

November is Epilepsy Awareness Month; families like mine are painfully aware of its existence EVERY DAY. We must remain vigilant, never letting our guard down.

When your child has a stretch of seizure freedom, it is truly something joyous to be celebrated.

With the celebration always comes cautious optimism. “How long will this season of peace last?”

We’re always aware that the monster could be right around the corner, and we can’t become complacent in our efforts to keep it at bay.

My daughter’s routine has rigid rules built in that we follow strictly.

We are aware of her many triggers, and we constantly battle to keep them under control. Meds must be administered on time. Always.

She needs plenty of sleep and hydration. We stay away from crowds and try to avoid illness as best as possible.

She is nonverbal and unable to communicate to us when something is “off” or just not right, so we take her temperature frequently.

Sometimes, there is no rhyme or reason when the stalker shows up. Painfully, we’re aware that’s just part of its nature.

Every single time Epilepsy rears its ugly head, our entire family is left reeling in its aftermath.

We’d give anything to shield her from going through it; to protect her from its wrath. It has a way of traumatizing us all, each time, and it never, ever gets easier.

We desperately try to stay calm as we pray for her to break free from its grasp. Every member of our household knows their part on the team when it happens, and we work together as a cohesive unit to help our warrior girl fight through.

We have her back in this fight, and we always will.

We’ll share information with others and advocate for her in November, and in every other month of the year, too. We’re painfully aware of Epilepsy and all that it brings with it.

Aware of the toll it takes. Someday, we hope a cure will exist and the monster can be defeated. In the meantime, we trudge on and continuously watch over our shoulders.  

For parents, the first day of school is typically fueled by varied emotions.

Excitement, anxiety, and hopefulness are often accompanied by a bit of retrospection.

Summer has ended and our children are a whole year older.

For some, there is a great sense of relief, as the return to routine commences.

As a mom, I’m enthusiastic each year for a fresh new beginning. As a mom to a child with multiple disabilities and special needs, I’m also TERRIFIED.

The anticipation of dropping her off and being away from her fills my thoughts with worry.

Will all her needs be understood and met? What if she has a medical emergency and I’m not there? Will everyone show her kindness and compassion? What hurdles and fights will we encounter this school year?

On the first day of sixth grade, as we head out the door, her brand new, pretty, pink bookbag is overflowing.

“Ordinary” school supplies aren’t causing it to burst at the seams.

There are no pencils tucked inside.

There is no ruler or pair of scissors.

She won’t require notebook paper or a calculator.

Her heavy bookbag hangs off the back of her wheelchair, holding more vital, necessary items.

It contains pieces of her life that must travel with her, everywhere she goes.

Over and over, I nervously review my mental checklist of things she will need:

Diapers, wipes, diaper cream, extra clothes…

Seizure medication, syringes, seizure rescue medicine, portable blow-by oxygen tank…

Seizure emergency plan, medical diagnosis forms, medication administration forms…

In place of the cute, one-page “All about Me” info sheet that young children take to their teachers on the first day, my daughter has an extensively organized BINDER.

It is a bulky, three-ringed notebook, complete with a breakdown of her diagnoses and how they affect her day-to-day life and learning.

It is jam-packed with information on her strict diet, sensory needs, seizure triggers and interventions.

Along with the overstuffed bookbag and the ample binder, our van is also teeming with a plethora of other essential daily items…

Ankle-Foot Orthotics, Knee-Ankle-Foot Orthotics, Speech Generating Device, a lunchbox adorned with unicorns and filled with pureed, dairy-free, and gluten-free foods.

As we get ready to leave home, I can see the happiness in her eyes when I ask her if she wants to go to her “Big School.” She claps her little hands emphatically and a sweet grin stretches across her face.

I squash down my fears for the moment and relish in the pure joy that she radiates.

When we arrive, I summon the courage and work hard to hold back the tears.

I am sending my non-verbal child with complex medical needs out into the world again, and it is scary.

As I push her chair up the walkway and watch her delight, I remind myself that her very competent team is in place and her education and medical plans are solid.

She needs this…I need this.

We greet her wonderful teachers; they offer me much empathy and ensure me that my child will be well-loved, and in good hands.

A few minutes later, I have a quick cry in my van, and realize I didn’t even capture the occasion with a photo!

I then dash directly to Starbucks for a stress-reducing reward of espresso and chocolate. It will all be ok.

The hours of day one will tick by, ever so slowly, but we’ve ultimately tackled this initial feat of going back to school.

Thankfully, it doesn’t take long for our new routine to set in.

After only a couple of days, I am reminded of how beneficial school is for my girl.

Parents of children with disabilities and special needs, we’ve got this.

Every year, our “Back to School” may look a little different; it may be a bit more challenging, but we get through it and push forward.

We have great big goals to achieve!

When my son became a big brother at age six, he also became so much more.

He instantly transformed into a protector, a doting role model, an empathetic helper, and the best buddy to his baby sister.

He has stood proud in these roles from the very beginning.

When our tiny, four-pound miracle girl came into the world, little did we know that her brother would also become a hero.

We had no clue as to the lessons he’d be forced to learn, at a very young age. As a sibling to his sister with complex medical needs and disabilities, he has carried a lot on his shoulders over the past 12 years.

He has timed innumerable seizures and called 9-1-1.

During a recent, very scary grand mal seizure, I heard him calmly relate to a dispatcher that we had been waiting on an ambulance for twenty minutes and his sister needed help, immediately.

He knows to open the door and step outside to flag down an ambulance as it drives up. A child shouldn’t have to know such a burden as that.

He has felt a sense of crushing worry that a sibling should never have to feel.

He has become a pro at securing his sister’s wheelchair into our van. He unhooks the latches and jumps out to let her ramp down whenever we park, without being asked.

When she shakes her head “no” and refuses to take her medicine for me, he willingly steps in and easily administers it, without any questions. It’s all second nature to him.

When she’s sick and running a fever, he will pop into the room repeatedly to check on her.

Every day when she gets home from school, he instinctively asks how her day was and he promptly puts on her favorite TV show.

My son has tagged along to countless therapies and specialist appointments. Offering to lend a hand to carry things and hold doors open for me, he NEVER complains about it.

He’s missed out on planned outings due to her being ill and he’s made sacrifices that most siblings couldn’t imagine.

When he was 11, he once told me that he would take care of his sister when I became too old.

That was a defining moment I’ll never forget; my heart felt as if it exploded with his profound statement.

I also worry about him too, and I wish for his life to be fulfilling and happy.

He’s eighteen now and has his own agenda, but I know that he will always make sure that his sister is well cared for.

Even though he’s older, and they don’t read books together or play together quite as much these days, the bond between them is still obvious.

He makes me prouder than he’ll ever comprehend.

Siblings like him, who walk in these similar shoes, are so very strong and resilient.

In my eyes, he’s a Superhero. I’m pretty sure his sister sees him that way to