After years of raising two children with special needs, I find myself asking, “Why the heck are they so easy to prescribe to children?”

For several years, my son was on medications of this type for ADHD and Anxiety symptoms.  These drugs bring with them many unpleasant side effects and unknown long-term effects.

Looking back, I wish I would have researched more and found an alternative sooner to these harsh drugs.  When a doctor tells you that your child needs medication, you look to them as the expert and you want to trust in their plan.

An idea hit me like a ton of bricks this year, when a doctor emphasized to me that my son’s dose of stimulant ADHD meds needed to be increased.  Hearing that he needed to begin taking a second daily dose of these drugs made me finally see the light.

There had to be another way.

As a mother on a mission, I began reading everything I could find on alternative treatments for severe ADHD and Anxiety.

Essential oils, nutrition, acupuncture and Chinese herbs all came across my screen as I researched.

As I had been looking into CBD Oil (Cannabidiol, derived from hemp from the Cannabis plant) for my daughter with Epilepsy, I found numerous articles on the benefits it was proving with ADHD and Anxiety.

I was intrigued…could this really work?

After more research (A LOT MORE), we gave it a go.

Now, six months into our journey with CBD oil, we have experienced incredibly positive, measurable results.

Immediately, I watched my son’s appetite return…with a vengeance!

We dropped the ADHD meds and suddenly, his stomachaches went away; he told us right away that he felt BETTER.

This was reason enough to keep this new found treatment going.

He began sleeping well at night…this happily led to another medication being dropped!

His heart no longer felt as if it were beating out of his chest.

As months went by, we continued seeing improvements.

A child that could not walk outside without earplugs in his ears for fear of bees, was now running in the yard, fearlessly!

His grades in Math greatly improved.  He could sit and work through an on-line homeschool Math lesson by himself, absorb the material, and then ace the exam.

All of these wonderful benefits proved we were taking steps, FINALLY, in the right direction.

Recently, we went for a check-up with one of my son’s doctors.

To our sheer amazement, he had jumped in both the weight and height percentile categories, by 25%!

If we had any doubt that the money we were spending on this treatment was completely worth it, those statistics sealed the deal for us.

CBD oil is completely legal to purchase in the US, but doctors can’t yet prescribe it…Insurance will not cover it.

The cost is 100% out of pocket for the consumer.

As budgets are stretched past their limits already for many special needs parents, hopefully someday this will change.

For us, the oil has been more effective than any prescription medications, and without any side effects.

To continue seeing its benefits, and to have a happier, healthier, well-adjusted child – we’ll continue to use it.

It is a vital treatment for him and it is so very well worth it to us.  We only wish we would have learned about the wonders of CBD oil and had access to it years earlier.

I hate the way you take over my daughter’s tiny body without warning.

You wreak havoc on her.

I hate the way you slow her breathing down to a terrifyingly slow rhythm and how you make her muscles convulse to the point of total exhaustion.

I am dismayed watching her have no control, while you render her powerless.

I despise how time stands still and five minutes feels like an eternity when you are here.

I hate the heartbreak and helplessness that I feel while I’m forced to watch her go through this, and trying to keep myself calm.

I hate that her big brother has to help me get the oxygen tank to her, and that a twelve year old has to bear such worry for his little sister.

I loathe the terror that floods my thoughts as I beg you to leave her alone and give her back to me.

I can’t stand the fear and anxiety that rise up, making me fear the absolute worst. Every single time.

I hate that every time you strike, I curse at the universe. I am furious.

There is never any rhyme nor reason to your presence. I am mad and I wonder “why her?”

Each time you arrive, I want to scream from the rooftops how life is completely unfair.

She should not have to go through any of this. She didn’t ask for this.

You bring us great sadness, as we wish we could go through this in her place, and spare her from you.

I resent that you make us worry throughout the night for her safety. You rob us of sleep.

You take away our serenity and our ability to ever fully relax. You steal our family’s freedom.

After being confident and complacent for so long, we are now afraid to go anywhere far from home.

We know it will be a long time until we’re comfortable enough to leave her in someone else’s care again.

For all these reasons, I sincerely hate you.

I wish we never had made your acquaintance.

As a parent of a child with Epilepsy, I will fight this fight with my child against you.

We hold onto hope that someday a cure for you will exist, as we long to banish you from our daughter’s life.

The transition from elementary school to middle school is tough for any child.

When a student is on the Autism Spectrum and suffers with Anxiety, the hardship of change is greatly magnified. Going from an environment where he knew all of his classmates and the entire school staff, the transition was overwhelming for my son.

Moving to sixth grade meant no longer feeling comfortable in his surroundings. When his accommodation plan fell by the wayside and his new school was unprepared and uninformed, his world quickly became unraveled.

The move brought a new world of sensory overload and anxiety over social interactions. 

There was no familiar Principal, school nurse or Resource teacher to look after him each day.

He was no longer in a safe environment with people that knew his personality and understood how to best relate to him. I can only imagine how alienated this must have felt for him, as he tried his best to adapt.

After three weeks of trying to acclimate, behavioral issues stemming from elevated anxiety, and some serious meltdowns, we decided that enough was enough.

We decided to homeschool our child.

We are now two years into the homeschool experience. We chose an accredited on-line homeschool program.

Our schedule is flexible, and we can set our routine as we see fit. There are no crowded hallways, ringing bells, confusing lockers or noisy classrooms in our home. He isn’t tasked with completing his assignments without help. 

I act as his Shadow and he is not left to navigate alone, in anxiousness. 

If he needs ten energy breaks throughout the day to run outside and burn off extra energy, they are granted. 

If he needs to stand or even walk around the room while we study, that’s perfectly fine. 

He feels safe at home and I feel secure knowing that he’s getting a good education, without any outside stressors.

Has it been all unicorns and rainbows? Absolutely not.

We do have our struggles and sometimes I have to count to ten and practice my own coping skills.

I am having to relearn course material that my brain has long since forgot, and it’s very frustrating.

I have to remind myself daily to keep patience and to carefully choose my battles.

The bottom line is that he is thriving and for now, we have found a favorable solution to our middle school misadventure.

For any parent in our shoes that is considering this option, I offer these tips (and remind myself to do them daily) to maintain your sanity, and to help your child be successful:

Reach out for help when you feel overwhelmed.

Our homeschool program has certified teachers, tutors and counselors on hand, ready to assist.

Establish a consistent daily routine, but allow yourself and your child room to be flexible.

Take breaks for yourself and for your energetic child…use a 30 minute run together as your Physical Education activity!

Keeps plenty of strong coffee on hand for yourself.

Don’t throw in the towel when the going gets tough.

One day may be extremely difficult, but I guarantee, you’ll see plenty of positive days too.

Baby showers, wedding showers and even holiday dinners almost always leave me with a feeling of sadness and exclusion.

The stories shared of the perfect childbirth experiences, healthy beginnings and lives of normalcy turn me into someone visiting a foreign land or planet… with no translator.

I listened to a lady at a shower once explain how she went forward with having her tubes tied after childbirth, because her baby was, “normal”.

Thinking back on my own childbirth experience filled with unanswered questions, weeks in the NICU and scary diagnoses, I am desperately unable to relate.

The stories of the joys and wonders of breastfeeding are lost upon me.

Hearing how quickly babies transitioned to finger foods from purees leaves me speechless.

I shift in my seat uncomfortably when discussions shift to milestones and feats mastered by their little ones.

I have no place in the conversation, as we’ve yet to experience the first steps or the first word, after five years.

Achievements that I hope will come someday for my child, will be years later than all the other children being discussed.

Play dates and after-school sports are another topic that I escape from chatting about.

Smiling and nodding is all I can manage, all the while trying my hardest not to slither under the table.

No one else is bringing up social therapy groups or physical therapy sessions.

I hear no talk of bullies or the lack of adequate accommodations in school.

There is no mention of countless hours and dollars spent driving their children out of town for the best specialists.

If there was, I would participate and I would be the life of the party.

I would gracefully join in the conversation of motherhood being exhausting, if the others understood what it’s like to have a child with epilepsy….and endless nights filled with anxious worry.

I have two beautiful children. I could talk for hours about them and how wonderful they both are.

They complete me and they are my entire life; my absolute world.

Our life may be completely different and unfathomable to most, but it’s OUR life. It’s our NORMAL.

We celebrate great happiness and joy in our family, but we also shoulder much sadness. No one wants to sit and listen to a, “Negative Nellie”, at a party, so I shield most of the sad and difficult parts from others.

If I’m ever at a function and the discussion is geared towards children, I do genuinely want to listen to others’ experiences. On the inside, I have a whole lot to say.

I appreciate their stories, even when I can’t connect to them.

During these conversations, you’ll typically find me sitting quietly, and observing – feeling like the outsider.

The thing about special needs parents is that we have so much love and pride for our kids, our hearts would burst if we shared it all.

Sometimes, we sit and hold tightly to our experiences.

On the occasions when I do stumble across other parents in my shoes, I find relief in no longer being the outsider.

Within five minutes of our excursion, I had become agitated.

The cord holding the seat upright on the already broken wheelchair snapped as we entered the store.

After sweating and cursing under my breath for what seemed like an eternity, it was fixed, and the seat was holding my daughter upright again.

Shortly thereafter, my son was pushing her round and round, to her sheer delight.

The store was busy and my blood pressure was slowly rising.

It wasn’t long before I was wondering, “For Pete’s sake, why did I try this today?!!”

My twelve year old is kind-hearted and witty, and he is also on the Autism Spectrum.

He is in a few words, full of energy.

My daughter is five years old, full of love and giggles, and has multiple disabilities.

On this day, the three of us continued on our trek and made our way to the baking aisle.

I stood waiting on my son to meticulously pick out a packet of sugar cookie dough.

At last, he chose the same cookie dough that he always chooses.

During this time, a lady tried to pass by us, as we were blocking the entire aisle.

I gently nudged my son, and using very nice manners, he quickly moved to the side and said, “Excuse us, ma’am.”

She smiled and continued on her way.

When I felt like I couldn’t take another second in the crowded store, the lady turned around and approached us.

She gave me a warm smile and said to me, “Honey, I’m a mom just like you.”

I must have looked puzzled because she smiled and told me that seeing my daughter in her wheelchair reminded her of her own son.

She told me that my son’s hurried actions to move his sister out of the way, clearing the aisle was unnecessary.

She said that she understands exactly how it is.

She asked me if I’d like to see a picture of her son.

She proudly pulled out her phone and showed me several photos of a handsome young man in a wheelchair.

She shared that he was twenty years old, and that he had special needs too.

We stood there like old friends, instead of strangers, complimenting each other on how beautiful our children were.

For a moment in time, the world stopped moving, and I found myself in an unexpected, magical moment.

There was a bond taking place that most people could not comprehend.

Our encounter was brief, and as she started to walk away she said something to me that I will NEVER forget.

She said, “You are my sister and I love you.”

I choked back the lump in my throat and told her the same.

It dawned on me that while I was focusing on surviving a complicated shopping trip, I wasn’t alone.

I was part of a sisterhood that is bigger than me.

While I was worrying about our inconveniencing other shoppers, it escaped me how wonderful my son was for watching over his sister.

He was entertaining her; playing with her in a way that he knew she loved.

I felt extremely proud of him and I then regretted all of the stressing I had done during our trip.

I received a great blessing that day, from a sister in my shoes.

When your child receives a diagnosis, you become fluent in a whole new language and soak up every bit of information that is available.

One of the symptoms of my son’s disorder is defined as:

“A preoccupation with only one or few interests, which he or she may be very knowledgeable about.”

This is such a completely perfect way to put it.

As parents, my husband and I have learned to embrace his interests and to immerse ourselves in them as well.

Over the years the topics of interest have changed, but his passion for them has not.

Instead of trying to change our son to fit into our world, one bit of parenting that we feel we’ve gotten right is this….we must learn to live in his world.

I am terrified of snakes.

When our son began memorizing the scientific names of snakes and recognizing hundreds of photos of snakes from around the world, it lead to us becoming the owners of a pet snake.

Then came pet snake number two and three.

Finally the snake fascination ended (and after a few years, they sadly passed away.)

I must admit a little feeling of relief when this preoccupation concluded.

With new vigor, the fascination with bearded dragons and geckos quickly emerged.

We are currently the proud owners of three bearded dragons and several brilliantly colorful geckos.

While a year ago, he would tell anyone that would listen EVERYTHING about the habitats and diets of these animals, the obsession with them has now faded away.

My husband inherited his child’s love for these animals, so they are still a part of our household.

From reptiles, the compulsion for Minecraft became prevalent.

This has been the longest lasting one, as we’re going on our third year as Minecraft connoisseurs.

Most of his clothing depicts his favorite characters and his room is filled with books and figurines pertaining to the game.

He becomes fixated on watching YouTube videos of other gamers documenting their gameplay, and his dream is to someday do what they do.

While we do encourage our child to take up other interests, like running or playing outside, we understand his primary focus.

We won’t force him to play football or other sports that he’s not interested in.

We do want him to be a well-rounded person, and we’ll strive to incorporate other facets into his life.

However, we want him to grow up knowing that we appreciate his individuality; and we’ll work hard to nurture his passions.

Because of him, we’ve learned to love things that we never would have imagined.

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.