Confession: I’ve been struggling.

I’m struggling to keep my head above water in an ocean filled with stress and worry.

I’m struggling to make choices that seem unpredictable and scary.

I’m struggling with being an empath and feeling everything that’s going on in the world.

I’m struggling to keep my composure and sometimes cry in front of my kids.

I’m struggling with the constant demands every day and I feel like I’m failing as a mom.

I’m struggling to answer questions from my children regarding school schedules and sports.

I’m struggling to find the balance between not doing enough and drowning in long to-do lists.

I’m struggling with the never ending days and the sleepless nights.

I’m struggling with the “what if’s” and the unknowns surrounding the future.

I’m struggling with anxiety that consumes my thoughts and will not allow me to focus on daily tasks.

I’m struggling to see the light at the end of the tunnel but praying that God will guide me through it.

Friends, if you’re struggling and feel like you’re ready to wave the white flag.

You are NOT alone.

I’m in the trenches with you desperately trying to find the way out.

And while I know it takes time to pull myself out of it, I’m stopping to breathe and asking for help.

I’m leaning on friends and allowing them to be there for me.

I struggle with accepting help and letting others support me the way that I support them.

But the truth is, we NEED to let our friends and family be there for us.

This is not competition to see who gets “best quarantine mom” or who has the best Pinterest worthy pictures.

This is real life.

And the struggles are hard.

I’m learning to accept the things I cannot change and take control of the things I can.

I’m learning to give myself grace as I navigate through these difficult times.

I’m learning to confide in friends and realizing that we don’t have to walk this path alone.

I know I’m not alone.

And friends, neither are you.

I’m working on my mental health and I hope you are too.

It’s ok if you’re struggling, but please remember this.

You are loved.

You are strong.

You are worthy.

And you matter.

You make a difference in this world just by being YOU.

His life.

A life worth celebrating every milestone accomplished and taking nothing for granted.

A life where love needs no words.

A life that has shaped me into the person and mother I am today.

A life that has brought our family so much joy and gratitude.

It’s not always easy.

It takes hard work and dedication.

To watch your child persevere and climb mountains you once thought weren’t possible.

The hardships and triumphs that come from raising a child with a disability is one that will change your life forever.

It’s a breathtaking and humbling experience.

It’s an extraordinary LIFE.

A life that some people think is less than.

Not good enough.

Not deserving.

The disrespectful comments that I’ve been reading in news articles and on social media are heart wrenching.

People sharing their honest feelings about children with disabilities in an uneducated and ableist manner.

How can anyone feel that my child’s life is not as important as their child?

How can anyone think that he doesn’t have a place at school like his siblings and peers?

How can anyone believe that he doesn’t deserve to be an active part of his community?

Ableism is still happening all around us and that will never change unless we continue to educate and speak up.

Discrimination in favor of able-bodied people is NOT OK.

NO life is greater than or less than.

Change starts with us my friends.

I will continue to speak up for our vulnerable population and for those who can’t.

I will continue to help educate others around me and encourage them to do the same.

I will fight for what is right and continue to advocate for my son until he is able to do that for himself.

And then, I will proudly stand beside him and pass the torch.

Giving him the courage and strength to stand up for himself.

And we will continue this journey together, creating a world that is more kind and accepting of EVERYONE.

I broke down last night.

All the thoughts and emotions came pouring out of me in a tearful episode on my bedroom floor.

As a parent of a child with a disability, I have to make difficult decisions more frequently than not.

But there is NOTHING that can prepare ANY parent to make the type of decisions we are all abruptly facing.

To weigh the pros and cons of our child’s health and safety AND the health and safety of everyone around them.

To send them to school or continue to teach them at home.

These decisions make me feel an unwavering amount of anxiety and guilt.

Decisions that seem wrong no matter what I choose to do.

What do you do when you have a child that doesn’t understand personal space let alone “social distance”?

What do you do when you have a child that explores the world around him by touching and feeling everything he sees?

What do you do when your child has a comprised immune system and gets sick easily?

What do you do when your child can not and will not wear a face mask or shield?

What do you do when your child has difficulty communicating and needs to see your mouth for social cues and facial expressions?

What do you do when your child is part of the vulnerable population that is often forgotten about or overlooked?

The choices we are given surrounding school leave me feeling overwhelmed and exhausted.

I’m trying to stay strong but I’m tired.

I’m tired of being asked if we made a decision yet.

I’m tired of the unknown and unanswered questions.

I’m tired of worrying and losing sleep over it.

I am physically and emotionally drained from all of it.

Friends, if you’re feeling any of this – you are NOT alone.

I definitely don’t have the answers.

Or a magic wand to make this all go away.

But I do have hope.

I trust and believe that we will make the best decision for our family just as you will for yours.

We are all doing the best we can in one of the most challenging times we’ve ever experienced.

Let’s remember to give each other grace and be kind to one another while we are trying to figure this out.

I’m praying for strength and guidance as we all navigate these difficult decisions and prepare for the road ahead.

My arms were trembling and I could barely hold myself up.

Sweat was dripping down my face and it was getting harder to breathe.

I felt like the intensity of the movements were too much for me.

I thought to myself – there’s no way I can do this.

And then I heard my boys cheering me on and clapping for me to keep going.

I took a deep breath in.

I finished the last five minutes of my workout using every last ounce of energy inside of me.

I collapsed on the floor in pure exhaustion.

I rolled over and I say “oh shit that was hard”

I know, not the best choice of words in front of my nine year old twin boys – but, I’m human.

I quickly apologized for swearing and Bubba nodded his head “yes” and walked over to me.

I was expecting a little slap on my arm or a firm finger pointing “no” because he recognized I said a bad word.

Instead, he took my hand and without saying a word, wrapped his small pinky finger around mine to do “pinky promise.”

This is something that we do frequently with his twin brother and Ethan is always watching.

I looked at him and said “pinky promise” and he shook his head yes.

I pinky promised that I would try not to swear again like that in front of him.

He was smiling from ear to ear.

He knew I understood what he was asking of me.

He approached me and used a hand gesture to tell me that he didn’t like that .

He was asking me to reassure him that I wouldn’t do it again.

He communicated.

That is a HUGE accomplishment.

Communication does not have to be verbal words.

And Ethan proves that to us every single day.

A simple pinky promise left me in tears and feeling so incredibly proud that he found a way to express how he was feeling in that moment.

A pinky promise that I will try my hardest not to break.

Bubba ~ Mommy is not perfect.
I make mistakes and I am continually learning.

But I pinky promise to do better and try harder tomorrow.

I pinky promise to use kinder words when I’m feeling exhausted or overwhelmed.

I pinky promise to take a deep breath when I’m feeling anxious or worried.

I pinky promise to be the best mom I can be for you, your brother and your sister.

Life is tough Bubba, but so are we.

And I pinky promise to be here loving you through it each and every day.

The chips and salsa were being passed around our table of friends at our favorite restaurant.

It was girls night. Jokes were told, stories were shared and laughter probably echoed all the way to the kitchen.

And then it happened.

While everyone was making funny faces and taking pictures, I heard her say it.

“Omg, you look like a retard!”

The laughter continued from you and our friends for a brief moment.

Until you all glanced over at me.

I wasn’t laughing.

Tears began to fill my eyes and I could barely get the words out.

“Please don’t ever use that word again.”

As a mother of a son with an intellectual disability, it breaks my heart every time I hear an insensitive comment about someone’s IQ or cognitive ability.

The term “mental retardation” was replaced with “intellectual disability” for a variety of reasons.

So when I heard it said in front of me, among friends, it was hard to keep it together.

When I eventually gathered myself, we talked about why this word is so degrading and hurtful.

Why it’s disrespectful.

And offensive.

Not just to me and my son.

But to EVERYONE.

I also shared why it’s important to teach our children to never use this word.

There were apologies and more tears shed as we ended our night.

There was a valuable lesson learned that day over dinner.

Words are powerful my friends.

And it’s up to us how we choose to use them.

“That’s so retarded.”
“You look like a retard.”

Saying these kinds of things is NOT OK.

Calling ANYONE a retard is NOT OK.

Let’s choose to use words that spread love and not hate.

Let’s choose to be respectful and include others that may look or act differently than us.

Let’s be mindful of the words we use and realize the impact they can have on others.

Let’s promise to make a conscious effort when speaking and to not allow this word in our conversations or in our homes.

Let’s start a ripple effect of taking it completely out of the vocabulary we use.

Change starts with us.

And there’s no better time than now.

I notice the lump in my throat getting bigger and I feel like an elephant is sitting on my chest.

It seems as though the walls are caving in and I can’t find my way out.

It’s hard to breathe and I can feel my face start to flush.

Anxiety has a way of stopping me dead in my tracks.

Sometimes it creeps up slowly and I feel the internal struggle and the intense emotions it causes.

Fighting back the tears as my two young sons stare at me wide eyed wondering if I’m ok.

And then there are days where it hits fast and with unbearable force.

The weight takes my breath away and I find myself running to the bathroom to catch my breath and splash cold water over my face.

These moments are getting more frequent and more intense as the days go by.

It’s hard to take care of yourself when you’re always taking care of everyone else.

And I’m struggling to find the balance between keeping it all together without falling apart and realizing when I need a break.

I’m really good at the “I’m ok” act and have been doing it for years.

Truth is my friends, anxiety is real.

It can be debilitating and life alternating if not controlled.

I am working hard to gain that control back.

I know this rollercoaster all too well and I will continue to fight for better days ahead.

Days with less anxiety and fear.

Days with less panic attacks and more time enjoying things I love.

Days with less tears and more laughter and smiles.

Days filled with more time enjoying the little moments and less time worrying about things that are out of my control.

Life is too short to live with so much weight on our shoulders all the time.

Tonight, I’m throwing in the towel.

I’m praying and asking God to help me carry this weight.

And to give me the strength I need to take care of myself too.

It’s not all sunshine and rainbows.

Times are hard right now.

For everyone.

And if you’re a parent of a child with a disability, being off school isn’t as “cute” and “pretty” as it may seem across social media.

I’m not saying every minute of every day is hard, but it’s not all fun crafts and cookie baking either.

As I sit and reflect after a very difficult day, I want to express my feelings and the reality so many families are facing right now.

You see, cancelling school doesn’t just mean no school for a few weeks…

No school for our son means

-No speech therapy

-No physical therapy

-No occupational therapy

-No ABA

-No routine

-No structure

-No consistency

AND no school.

Sounds like a lot right?

It is.

Our son gets medically necessary supports and therapies every single day.

Some of them are multiple hours per day or all day long.

And when you take that away….

The fear of regression starts creeping in.

Our Bubba has worked so incredibly hard to be where he is today.

And he would not have the skills that he has WITHOUT all of the services I listed above.

This is more than just “social distancing”.

Trust me, we are pretty good at social distancing when we have to. We’ve been doing it for years because… well, autism.

But this is different.

This is life altering.

And it is now my job as his mom, to become

His Teacher

His Occupational Therapist

His Physical Therapist

His Speech Therapist

His ABA therapist

AND continue to be his mom, his caregiver and his advocate.

Oh and don’t forget we have 2 other children that need supported and loved through all of this too.

I am extremely grateful for our school district and the supports they are providing during this difficult time.

But this is HARD my friends.

And we are all doing the best we can.

I want you to know that you are NOT alone in this.

My anxiety is at an all time high and my fear of Ethan regressing is real.

It’s scary.

I know it.

You know it.

But what I’m trying to focus on is to control the controllable.

There are so many things out of our control right now and it makes things really intense.

If I allow myself to feel too overwhelmed and sink down into the rabbit hole, then my kids will too.

So instead, I take control.

I may not have the same education and experience as all of the wonderful people who work with Ethan every day…

But I what I CAN do for him is support him.

I can encourage him.

I can help him.

I can provide the tools that he needs to continue to learn.

I can teach him kindness, patience, and strength.

I can demonstrate how we get through hard times as a family and especially when things are scary and unknown.

And I can be here to love him through it all.

Bubba- I will probably fail at something every day, but I promise you that I am doing the best I can for you and your brother and sister.

And we will get through this TOGETHER.

Dear Mama,

I know you’re probably feeling every single emotion flooding through your body right now..

And I wish that I was there to wrap my arms around you and give you the big loving hug you so desperately need.

I may not physically be there with you, but please know that I am here.. along with an army of fierce mamas who have been exactly where you are.

I’ve been on this journey for almost 9 years now and there are a few things I’ve learned along the way.

Many of them I’ve had to learn the hard way…

And if there’s even just one thing or one moment that I might be able to make a little easier for you…

Then it’s worth me sharing.

I know hearing the words “your child has autism” can be heart wrenching. .

Scary.

Confusing.

But I’m here to say that it’s going to be OK.

FEEL the emotions.

All of them.

And don’t let anyone dismiss what you are experiencing or tell you that it’s wrong.

Because It’s not.

There will be moments that feel unbearable.

Moments that you feel broken.

But you WILL get through it mama.

I promise.

I believe it’s part of the process of accepting and moving forward.

And these moments of feeling strong emotions will come and go throughout your journey over the years.

It fuels us.

It motivates us.

It inspires us to do more. ..

To be more.

It’s overwhelming to hear your child has autism and then the question still remains…

Now what?

Resources.

Search.

Learn.

Educate yourself.

Connect with other families in the community that have been there. It’s up to us to find supports that will help our children become the best version of themselves.

And I’m sure you’ll agree, our kids are amazing aren’t they?

It’s important to choose what you think will be best for your family and your child.

Everyone will have an opinion.

Everyone.

“Try this therapy. “

“Do this diet.”

“Have you heard of this therapeutic approach? “

“Don’t do that one, it’s harmful to our kids.”

I’d be lying to you if I didn’t say this bothered me years ago.

I truly believe that most (not all) but most people are trying to be helpful and they genuinely care.

But no matter what mama, you choose and make decisions on what therapies to do and what not to do based on what you want for YOUR child.

YOU know your child best.

Always Remember that.

Doctors will try to share statistics …

And numbers…

what they’ve seen or read over the years…

And I’m begging you, please don’t believe that is what your child’s future will be.

They are not speaking about your child and they have no idea how they will be as they get old or what they are capable of.

Most of the scary numbers and facts they told us about our son have been proven wrong over and over again because we refused to give up.

We didn’t let a diagnosis, a number or a statistic define our son.

And my wish for you is that you find the strength to do the same.

I know it’s in there mama.

I know it might not seem like it right now but you are stronger than you think my friend.

Life is going to look a little different now…

You’ll find your schedule consisting of therapies, doctor appointments and countless phone calls.

You’re going to wonder how you’ll to do it all.

How to make it all work.

How to cook, provide for your family, work and give your child everything they need. ..

The truth is, it’s messy.

It’s kind of chaotic.

And most people will not be able to relate to the life that you’re living.

But please believe me when I say, you are NOT alone.

There are thousands of us who are on the autism journey with you and we are still trying to figure it out.

We take it day by day.

And things will change over the years …

My son is a completely different boy than he was just a few years ago.

Our children are ALWAYS learning.

If they can’t do something today, that doesn’t mean it’s forever.

It just means not right now.

Never give up mama.

Believe in your child so much that others look at you like your crazy.

Your child needs YOU.

You are their voice and they’re advocate until they can speak for themselves.

I can honestly say that I am not the same woman I was before our son was diagnosed.

You will learn and grow and change over the years just as your child will.

But I promise you, you will be so darn proud of how far they will come and how far YOU have come.

We are all in this together mama.

Find your tribe of friends that “get it”.

Be there for each other through all of it.

The good, the bad and the ugly.

You will need them and they will need you.

And if you’re feeling a little down or can’t find your way…

Please know that this mama right here is just an email or message away.

Stay hopeful mama.

You’ve got this.

Love,

Christina