Yet, even though my life isn’t filled with these typical moments of celebration like I once imagined, I have learned that there is great beauty in recognizing and celebrating the little things.

In fact, the little things are what I now truly live for.

Being a special needs parent requires reassessing situations continuously and never giving up.

My daughter is five and a half and she is unable to walk or talk. Making connections takes a great deal of repetition for her. 

Instead of days or weeks being poured into learning a new skill, we will put in years. 

We started working on sit to stand transfers three years ago.  For three years we diligently practiced this, having her pull up to a standing position from sitting on a bench. 

I was overcome with pride when I finally had the privilege of watching my daughter stand upright, holding onto her walker for four whole minutes!

This accomplishment took my breath away and solidified the fact that hard work eventually leads to incredible rewards. 

Seeing the look of joy on her face as she stood there, asserting her independence, was a moment of true celebration.

She is filled with love and light.

She adores being held and cuddled tightly.

There have been times when I have felt great sadness over never hearing her speak the words, “I love you.”

Thankfully, over time I’ve learned to open my eyes and my heart to see and embrace the little things.

This year, she has started to display affection with us in the most beautiful way. When I give her kisses and tell her, “I love you”, she reciprocates by taking my hand with her tiny hands and pulling it to her face.

She will cradle my hand to her face, holding it there sweetly against her cheek. The only way to describe it is magical.

There are so many little things that I now live for…

Watching her small fingers move as I sing, “The Itsy Bitsy Spider”…

Seeing her initiate steps while harnessed atop a treadmill during Physical Therapy…

Laughing as she grins and claps in excitement when she sees her reflection in a mirror, or when I ask if she wants to read her favorite book. 

They say that life isn’t measured in the number of breaths that we take, but in the moments that leave us breathless. She has taught me how true this is. 

Graciously, I have encountered countless moments like this with my daughter. 

I would compare them to watching a sunrise; I am captivated by them and feel such an appreciation for them. 

Life is even better when you live for the little things. 

These statements are all unwarranted bits of advice that we have been given, having a child with feeding issues.

When your child can eat by mouth, but physically can NOT tolerate textures in food or lumps of any size, feeding becomes a slippery slope. 

In disagreement of these words of advice we’ve been given too often:

She would NOT just magically eat a cracker or a chip if we were to simply let her get seriously hungry.

She is NOT lazy.  She is the hardest working person I have ever witnessed.

She is NOT picky; I’m sure she would gladly devour a slice of pizza if she could.

Baby food does not contain the fat and caloric amounts that she needs to maintain her body weight, and for growth.

If there is ONE lump in her food, it will NOT be OK. She will detect it and she will gag until she makes herself sick. Then, a feeding aversion will follow.

Thanks for these tips that have worked for your typical child, but no thanks.

My daughter LOVES to eat. She is five years old and has multiple cognitive and physical disabilities that make chewing an impossible feat.

Therefore, we have big issues with feeding.

She enjoys casseroles, spaghetti, asparagus, roast beef and potatoes, and much more… as long as her meals are smoothly pureed so that she can tolerate them.

I have often said that our Ninja blending system is our saving grace. It’s amazing what you can puree with the right blending system and the right amount of liquid!

I honestly do not know what we would do without it, as her ability to eat depends on it.

We’ve learned the tricks of the trade (adding heavy cream, milk and water to her meals) for achieving the perfect consistency.

While chewing is a goal we continuously work towards, we are grateful that we are able to feed her in this manner.

Our pantry is also well stocked with high calorie pudding, yogurt and applesauce that are easy for her to manage.

Travel is always tricky and dining out requires very careful planning, but we manage to make it work.

Feeding issues can be absolutely stressful, and it’s hard for parents who haven’t walked this path to fully understand.

No matter which method Special Needs parents employ to feed our children….whether it be a feeding tube, bottle feeding or pureeing everything, we are all doing what is best for our children and providing them with the necessary nourishment they need to survive and thrive.

Instead of giving us tips that are not constructive or productive, just offer an encouraging word.

We truly appreciate kindness and understanding.

Those are things we will thank you for.

As a parent of children with special needs, this new world has replaced the old world that I lived in.

Life once entailed going to work, bringing home a steady paycheck, and spending, “free time”, with friends.

Once, I went on dates with my wonderful husband regularly and we even spent a night away, from time to time.

It’s hard to remember that world; that previous life. My children are now my world, and they are my life. I love them with every fiber of my being and I would have that no other way.

However, something happened recently that reminded me of who I used to be before this life….I found myself again.

Years overdue for a night out together, my husband and I ordered tickets to a concert on a whim. Our long-time  favorite band, Pearl Jam, was playing one hour from our home.

We heard on the radio that they would be performing and without hesitation, we immediately purchased tickets.

“On-a-whim”, and, “without hesitation”, are words that we thought had vanished from our vocabularies.

Our life is filled with routines, planning, and a reluctance to schedule date night in fear that events beyond our control will force us to have to cancel.

Ordering tickets for a concert, two months in advance, travelling an hour from home, and staying out past midnight had become ideas unheard of!

Leaving home alone together in recent years had become so rare, it had become a special occasion to just grab a quick coffee together, by ourselves. That is just the way it is.

When our date night arrived, we were like two ecstatic teenagers!

Feeling the excitement as the lights went out and the reminiscent music started, I felt renewed.

Seeing the band on stage, while my husband and I danced and sang along to all of our old favorite songs, I sensed the old me resurfacing.

Hearing the familiar music from our youth, and feeling it loudly vibrate down into our souls, we were finding US again.

For a moment in time…there were no meds, no therapies and no meltdowns. There was only the two of US, having our ultimate date night.

While we rushed home after the amazing show ended and we couldn’t wait to kiss our babies goodnight, we made a vow to make time to just be US more often.

When we listen to all those songs now, they have new meaning. They remind us of a simpler time, while simultaneously reinforcing the fact that the old version of US hasn’t disappeared. 

The old me is still in there somewhere, and in most ways, I’m better than I once was. I know now that finding ourselves again and reconnecting from time to time is imperative to stay afloat in this life.

One small piece of advice I offer to other parents and couples in our shoes… Do things for YOU.

Do those things that make you deliriously happy.

Go see that that bucket-list concert, have coffee, go for a long run, hit the gym, go on amazing dates with your spouse.

When you are like us and can’t always find the time – sometimes you just have to MAKE the time!

These are all words that were spoken to me when I was eight months pregnant.  I was eagerly awaiting my second child.

She had a name, a pretty pink nursery, and a family that was already in love with her.

After an ultrasound picked up birth defects and restricted growth, a doctor will little compassion smashed all of my dreams and hopes by telling me these harsh things.

No matter how grim a situation may appear, there has to be a better approach.  

These words caused me and my husband days of heartbreaking sadness and horrible sleepless nights.

The intervention of a wonderful, compassionate Geneticist ruled out the disorder that our baby was thought to have had.

While questions still loomed and we were four weeks from knowing her exact fate, we had reason to hope.

“We may have to just let nature take its course.”

More agonizing words from yet another doctor, one week before our daughter’s birth.

For a mother that was feeling her baby’s kicks and cartwheels from inside, I didn’t want to hear that.  I refused to digest her words.

We were on pins and needles and wouldn’t know anything definite until her birth, but one thing we did know…. as long as our baby was alive and we could hold and love her, we would have the world.

We would take anything else that came along with her.

Fast forward four years….my daughter is a beautiful, miraculous girl that reminds us daily to hold onto hope.

She has a rare genetic disorder that causes her multiple physical and intellectual disabilities, and she holds our hearts in her tiny hands.

We’re blessed to have her here and she is PERFECT.

Even though our life has taken a different path and our journey is different than we ever expected, we embrace it. We are truly lucky.

We still hear those words from time to time that doctors should never say.

“If a child doesn’t walk by the age of four, the chances are very slim.”

We have met many special needs parents that have children that walked at eight, ten and even twelve years old.  We’ve learned to let words like these roll off of our backs.

We tackle challenges as they come at us and we take what doctors say with a grain of salt.  They clearly don’t know everything.

When I look at my daughter, I see a child that THRIVES, and a girl that is very COMPATIBLE WITH LIFE.

In fact, she gives life new meaning.

If only doctors could put themselves in the shoes of the parents, and fill their vocabulary with more compassionate words.

Parents would not have to hear the words that doctors should never say.

When you finally have a firm diagnosis on paper, after waiting anxiously and patiently for it, you think that things will easily fall into place.

The missing piece to your child’s puzzle has been found, and services will magically open up and be made available, right?

WRONG.

Hundreds of phone calls to service coordinators, government agencies, insurance companies and mental health and behavioral specialists have left me with the wind knocked out of me.

A school system that places more importance on the COST of school services for your child than the child’s actual well-being….accommodations that are written as a plan to be followed for your child but fall by the wayside: these things force us Autism Moms to FIGHT.

When an IEP is changed and your child loses invaluable services, the battle within you wages on.

When a Shadow is denied for your child because it’s too, “costly”, you make more phone calls, write emails and letters, securing your place in boxing ring.

You learn to fight for your child at all costs.

I have been in matches and gone round and round with different agencies, school officials, and insurance companies.

My son is eleven years old.

I am a seasoned fighter.

I have pulled my son from school, and turned our dining room into a home-school learning environment.

I have painstakingly sought out Autism Spectrum Disorder groups for him, argued with doctors about needed medications and begged the system for help with expensive, necessary therapies.

I have given dirty looks to strangers when I felt them staring at us in public – times when life was overwhelming for my child – when the movie theatre was too loud, the circus was too crowded and the restaurant’s smells were too pungent.

I have fought for him, and with every breath in me, I will continue to fight for him.

The fight is one thing that has remained constant over time.

I won’t be retiring from the ring anytime soon.

He is worth every blow, every punch and every swing that comes our way.

Strength is a characteristic that my daughter has displayed since before her birth. 

With many odds against her, she entered the world as a fighter. 

A rare genetic disorder, accompanied by an array of medical issues and disabilities, has taken many things away from her. 

While she is unable to speak, walk or participate in most activities that other five year olds enjoy, she has an abundance of STRENGTH. 

Instead of fixating on her disabilities, I am amazed by her limitless ABILITIES. 

She has the ability to light up a room and melt every heart with her sweet, innocent smile.

She overcomes obstacles everyday with grace and determination.

She has the ability to fight, without losing spirit.

With no intention of surrendering, she is able to tenaciously work towards colossal goals.

She has the ability to teach others of courage and bravery.

She has the ability to inspire.

Without verbalization, she is able to communicate a love greater than most people can begin to imagine.

She has the ability to cause others to want to do better, and to be better.

I was terrified last year when she underwent a major surgical procedure.

To hopefully prevent early onset arthritis, she had two major hip surgeries, Dega and VDRO Osteotomies.

With this experience, for the first time in a long time, my strength waivered considerably.

Seeing her hooked up to monitors, incapacitated and completely immobilized weakened me.

Watching her suffer a seizure after remaining seizure-free for twenty-two months felt defeating.

Thankfully, she emerged victoriously from all the stress that her little body endured, and she began the road to recovery. 

With every passing day, she became stronger. 

I was reminded of how well she takes all things in stride, even the hardest challenges that life throws her way. 

She helped me find my own strength again.    

Watching her sail through intensive rehab therapy, eight weeks after surgery, I saw a true warrior.

A little girl with a fight in her soul, up against the adversity of learning to crawl again.

She had the mighty courage to meet that challenge.

She didn’t cry or wince; she worked diligently and pushed her way through.

The great struggle of physical therapy after being immobile for eight weeks brought out the great toughness in her.

The love that I have for this little girl gives me strength to move mountains.

Whatever it takes…Because of her, I have the ability to charge ahead and to find hope in every situation.

Buildings would have fewer and less noisy fire alarms. 

There would be no such thing as bullies. 

Zero-tolerance policies for bullying would actually be enforced – to the utmost degree. 

Kindness and understanding would reside in the hearts of everyone. 

There would be more sensory-friendly activities to participate in.

There would be more video games available for and geared towards individuals with Autism.

There would be a texture-free food that is packed with vitamins and tastes just like vanilla ice cream.

It would be served in every restaurant and sold in grocery stores all over the globe!

All automatic doors would open only by a switch that you control, and they would only close when you again hit the switch.

No doors would open or close too fast – they would all operate slowly.

At sporting events, air horns would not be permitted to signal the start of the event. They would be replaced with a quieter alternative.

Headphones or earplugs would be acceptable accessories, anytime. People wouldn’t judge or stare because someone wears them out in public.

Educational films to enlighten the public about Autism would be shown in movie theatres everywhere for FREE.

There would be meeting facilities in every town where kids and adults on the Autism Spectrum could interact. There would be video games to play there and everyone would accept each other.

Everyone would be treated as a best friend.

People wouldn’t judge or form an opinion of others, based on a diagnosis.

They wouldn’t assume that someone is any less of a person because of their disorder.

Wonderful schools would exist and be easily accessible to individuals with Autism.

These schools would have massive sensory rooms, trampolines and flexible schedules. There would be long periods for recess.

Learning would be facilitated with computers and iPads.

Any person of any age, at any place on the Autism Spectrum would be invited to attend.

We wouldn’t have to fight so hard to gain access to necessary therapies and programs.

Therapies would be more affordable so that no one would have to go without them.

The excruciating waiting periods for them would disappear.

Twenty-one years of age would no longer be the cut-off for individuals with Autism to receive services.

Autism does not magically vanish at 21, so the beneficial schooling and services shouldn’t either.

These ideals would make for a more perfect world….to an eleven year boy on the Autism Spectrum, and his Mom.

Certain days, it would be nice to sit with my coffee and snuggle with my kids WITHOUT feeling the twinge of guilt that I always feel.

There is just so much to be done, and my mind won’t allow me to wind down.

There may be a great movie on television that our family could be watching together and taking time out for, together.

Instead, all the while, I am thinking of the numerous therapy methods I should be facilitating for my daughter.

Sometimes, I just want to cuddle and relax with her;

sometimes I just want to be Mom.

Today I don’t particularly feel like spending twenty minutes wrestling my headstrong daughter into her orthotic therapy suit, knee-ankle-foot orthotics, and making her walk in her gait trainer.

This is an integral part of our routine, but today, I honestly wish we could just skip it.

I know in my heart of hearts how therapeutic it is for her.

I know that every minute spent in her orthotics, in an upright position, is beneficial for development.

It is essential to work on her coordination, core strength, muscle development and digestion.

I also remind myself that she needs time in her standing frame later on in the day.

We must work on hand-eye coordination, so I really should get up and charge her iPad.

Installing some new cause and effect apps on it also must be done.

Before lunch time, I need to employ her Nuk brush and work on motor sensory therapy.

Her cheeks and tongue need a good massage so that we can strengthen the muscles in her mouth, and hopefully someday, she’ll learn to chew.

Everyone is comfortable and in a state of repose on the sofa; my brain is telling me to get up and get to work!

I want to ignore it and continue resting and cuddling.

I don’t want to be her therapist today.  

Today, I just want to shower my beautiful, amazing child with affection.

Today, I just want to be her Mom.

Today, I think I will do just that.

Will it come easy? No.

Will the guilt get to me? Most definitely.

But, as hard as it is to relax when I know how important these things are, she deserves to just be a kid sometimes.  She deserves to just hang out and laugh with her brother.

She shouldn’t have to work perpetually.

Although all these activities on our checklist are aiding in her progress, I remind myself:

One day of rest will not make or break us.

It will not be detrimental if we leave a few boxes unchecked today.

Someday, I will be able to take a day “off” with my husband and my kids without feeling like an inadequate mom.

I will sit and enjoy our family time together and just be Mom.

Allowing myself to give kisses and cuddles and letting go of my worries for a while.