The length of the list of basic human rights I learn are denied to many never ceases to surprise me.

While I recognized a handful of these issues before motherhood, becoming a mom (specifically to children with disabilities) has caused both my awareness, anger, and action regarding these most important matters to grow exponentiality.

I am thankful for the parenting journey I am on and the situations I encounter because they grow my awareness of these injustices to a degree that never would have been reached had I not been so personally affected by them.

There are so many things much of the population takes for granted each day, often without even knowing it.

For instance, access to a restroom.

One of the frustrating barriers disabled individuals and their caretakers face is lack of accessibility to appropriate toileting accommodations.

While most of the world doesn’t think twice about the kind of bathrooms that may be available in public, my family and our precious children with medical needs must consider and plan around bathroom access each time we leave the house.

Easy access to toileting in a way that preserves privacy and dignity should not be something that has to be fought for. It should be common sense, automatic.

There should be no conversation to be had about it.

Yet, that is not our reality.

Many public places fail to have enough usable wheelchair accessible stalls if any at all.

Beyond that, there is the issue of space for changing.

As a mom to babies and small children, I have found myself frustrated by the fact that many public bathrooms don’t even have baby changing stations.

But at least I can usually lay my little baby or toddler across my lap or on a counter to have their diaper changed.

What about those who are older children, teens, and adults who use diapers, medical equipment, or physical assistance to meet their toileting needs?

While I know that inclusive bathrooms exist–offering adult-size changing areas, substantial room for wheelchairs, etc–I have never seen one in person despite having parented older children with disabilities for six years.

Rather, I have found myself changing and assisting my loved ones on the dirty floors of vehicles or avoiding certain travels and gatherings where I know accessibility will not be offered.

It seems that many businesses are hesitant or unwilling to do what it takes to offer truly inclusive toileting areas.

The need to use a restroom is not something individuals can simply choose not to have.

Every single person needs a safe, comfortable, usable space to take care of their toileting needs.

So why is the provision of such spaces not a greater priority to so many public places?

Maybe they have gotten by without it for so long they don’t think it matters.

Perhaps they truly have no idea how inaccessible their spaces are.

Whatever the reason, we must raise our voices and demand change in this area.

The voices of the disabled community are even more powerful when joined by other voices, by YOUR voice.

The more voices raised, the greater capacity we have to cause waves big enough to create true change.

We need YOU. So how can you help?

-Educate yourself.

One of the greatest causes of lack of accessibility is simply that people don’t know.

People who do not have certain needs don’t usually place themselves in the shoes of those who do.

Choose to be intentional about learning about the accessibility in public places near you.

Start taking mental notes of what places do or don’t offer appropriate accessibility.

-Speak up.

When you notice a business does not offer accessible toilet/changing spaces, mention your observation to the staff.

If you encounter a business that does offer accessible spaces, say something then too!

Make a point of mentioning how much you appreciate their inclusivity and tell others so the business can receive the support they deserve.

-Spread the word.

As you yourself come alongside disabled individuals as an advocate and ally, help make the issues known to those in your circles so they too can gain knowledge, understanding, and opportunities to advocate.

The fight for inclusivity and accessibility does not belong only to those needs are not being sufficiently met.

The fight belongs to every one of us.

When we battle on behalf of those around us, we become stronger as a whole and remind ourselves of who they are and who we are: simply human and simply kind.

Simply humankind.

When I think of my last five and a half years of being a parent, I don’t have many regrets.

There are a few things I would have done differently if I had had more information or experience.

One of those would be finding my mama bear growl sooner, especially on behalf of my autistic daughter.

She is brilliant, loving, gifted and I couldn’t be prouder of who she is.

As her mom, I am the protector of her wants, her needs, and really, everything that she is, especially when the communication of those things does not come easily to her.

I knew this when I became a mom.

I didn’t, however, know exactly how or to what degree I would need to roar on her behalf.

I certainly had no idea how often I would find her in need of my defence.

The world was a little more cruel and ignorant than I wanted to believe at the time.

In the early years, I thought inclusion meant taking her to every event, every gathering, every outing.

I truly believed that we could be a family who unashamedly showed up, participated, were who we were, and that this could eventually be successful and promote inclusivity.

I thought more exposure to the things that triggered my child would be helpful in the long-run.

I tried my best to give her tools to be successful in these settings, to help her settle in.

We did what we could to accommodate and help her cope.

But still, I asked big things of her…too big of things.

I knew what things were hard for her to be a part of and I knew that involvement in these things could cause her to struggle emotionally and physically for days.

Ultimately, I expected and asked her to be the one to adjust instead of those around her.

I am sorry that is the stance I took in my ignorance.

I have told her this and have committed to do better as I learn more of what she needs from me and how best to be an advocate.

These days, my mama bear roar has grown from a stifled whisper to a rumbling roar.

I hope to keep refining this roar of mine as I grow and learn over the years with my daughter, and others in the autism community, as my guide.

I will never stop having to learn because I am not one of them and cannot understand and advocate well unless I become their student.

I still have much to learn, but what I do know now is this:

I will no longer ask my daughter to be the only one required to adjust.

She is learning and adjusting and so must those around her.

It’s a two-way street.

If people will not respect my child’s autism and the accommodations, understanding, and flexibility that come with that, there is no room for us in their circle.

If individuals choose not to accommodate and adjust, based not only on the fact that she is autistic but also the simple fact that she is a human being, we have other places to be.

I will not ask her to be less autistic so that people might feel more comfortable.

I refuse to ask her to be someone she is not so that those around her do not have to step out of the pointless societal expectations that we consider to be the norm.

If people choose their curiosity over her comfort and sense of belonging, I will not subject her to that kind of scrutiny.

My daughter is autistic.

Autism is one of the greatest, most incredible things about her that makes her HER.

I will protect her and I will protect her right to be autistic, whenever and wherever possible.

I wish I had known then.

I wish I had fought harder.

I wish I knew I could give us permission to step out of the circles that made her feel less-than or didn’t take her preferences or triggers seriously.

I wish I would have given a louder “no” to those who saw her as a curiosity or puzzle to be solved instead of a precious little girl worthy of respect, consideration, and adjustment.

I cannot change the past, but I have changed the present and I am working to change the future.

Hear me roar.

Autism awareness is something I used to go all in for.

Not only in April–which holds World Autism Awareness Day–but every day of every year.

I have spent most of my life surrounded by people with Autism whom I dearly, dearly love.

Autism is dear to my heart in just about every way.

I have lived with, worked with, been teacher to, and parented people with Autism; and I am a better person because of it.  

So of course, when the day came each year when I could be extra loud about just how much I love these people and how we can better accept and include them, I was loud and proud.

I was all about sharing information, flashing the puzzle piece symbol, and telling the stories of *my* experiences regarding Autism.  

Over time, my mission to not only promote awareness/acceptance of Autism had to change, evolve, be broken down, and then be built back up again in a very different way.

I now know better and I therefore must do better.

I have learned much about how to step back and approach Autism awareness/acceptance in far more respectful, honorable, and truly inclusive ways.

Here are some of the things I have learned:

Just because I have experience living with and around people who have Autism, I am not and never will be the expert on Autism, nor is any other person who is not autistic.

Non-autistic individuals should never be the ones solely standing behind the megaphone, declaring what Autism acceptance should look like.

That megaphone belongs to autistic people and we must protect the space behind it that they deserve.

I am passionate about raising my voice alongside them, but I want to do that in a way that is respectful and effective, which means I must ask autistic people what *they* feel is the best way to implement this.

Autism awareness/acceptance tends to begin at awareness only and fail to ever achieve acceptance, as we seem to focus on learning the “facts” and projecting them on the Autistic Community rather than seeing individual human beings.

Autism awareness is so, so much more than studying information about Autism or paying special attention to an autistic person you may come across.

Simply seeking to learn “about” Autism without the input of autistic people only gives a tiny piece of a very, very large picture.

Why? Because autistic people are just that…people.

And just like every other person, they are all different.

There isn’t one answer, one description, one approach that fits all. Ever.

Their needs, desires, and what things help them feel the most respected differ from person to person, even when a diagnosis is shared.

For instance, I know some individuals who prefer to be called a person with autism…others who prefer to be called autistic…and still others prefer to be called an autistic.

How can we know how to respect these individuals best when our education comes from a random clinical internet article and not the person or people we are seeking to better honor?

Some people appreciate the puzzle piece symbol as a representation of Autism while others find it highly offensive.

I know some people on both sides.

Some find the descriptions of placement on the spectrum insightful, and many others find it demeaning and degrading.

We must choose to be the students of those who live Autism—truly live it—each and every day.

Allow yourself to be challenged, listen well, and better as you learn to know better.

I think ultimately, the greatest thing I am learning is that awareness days, months, and symbols of any kind can never ever stop on the doorstep of whatever cause it is we are advocating for.

The truth is, Autism awareness/acceptance is really HUMAN awareness and acceptance.

The bottom line is that everyone is diverse, distinctive in the thoughts, opinions, and feelings that make them themselves.

So perhaps, it has little to do with Autism and everything to do with treasuring every single human being simply because they are…well…human.

If we can take authentically take this approach, we will naturally find ourselves handing the spotlight back to autistic people.

For when we honor human beings for who they are, we seek to learn from their experiences, better understand their needs and desires, and move mountains in order to show them the respect and honor their deserve.

I was recently talking with my son about one of his diagnoses.

Together, we were making a list of things that this particular diagnosis cannot take from him.

At one point, I said “Well what about friends? Your diagnosis isn’t able to take away friends and your chance to make friends, right?”

To my surprise, he said yes, it does take away friends.

Since our conversation, I have thought often about my son feeling that this piece of him—a diagnosis—has the power to take friends from him.

His feelings are valid.

His words and his perspectives are worthy of being heard and honored.

I am thankful he shared his thoughts with me and chose to collaborate with me and give permission for others to hear his experiences.

While our conversation about what this diagnosis means to him and for him was lengthy, it was the comment about friends that has continued to stand out to me.

When I place myself in the shoes of my son, I must admit that he is right.

According to much of what he experiences, he has every reason to believe that his diagnosis takes friendly relationships from him.

For years, he has watched people avoid him, misunderstand him, underestimate him, and not try to include him.

He has seen those who should have been on the front lines of knowing him and loving him—those who should have been his built-in friends—turn the other way.

He has also seen me relentlessly advocate and speak up, though it has not been enough to guard him from the ignorance and at times, straight-up cruelty he encounters.

Many times, ignorance is chosen. That is nothing short of cruel.

The thing is, all of this really has little to do with his diagnosis.

He may have very few friends, but it is not his diagnosis that has that kind of power.

While it may appear that his diagnosis is what steals from him the opportunities to have connections, play dates, and precious, close relationships, a diagnosis is nothing more than that—a diagnosis.

My son remains a complete and remarkable human being that any soul would be all the better for knowing.

So, if not his diagnosis, what are the actual thieves of these relationships my son aches for?

 Ignorance.

 Prejudice.

Unwillingness to change and grow.

Judgement.

Fear of the unknown.

Selfishness.

Comfort over compassion.

My son’s diagnosis is a powerful thing and an aspect of him that is worthy of being noticed, learned about, and considered.

But it is not—nor will it ever be—mighty enough to steal way relationships.

It breaks my heart and makes me angry that he has been made to feel this way.

The truth is, those who know—and I mean truly, truly know—my son adore him.

They find him to be one of the friendliest, most delightful people in their world.

They are keenly aware of his presence, they allow him to beautifully take up his intended space without apologizing for it, and they feel a constant attraction to him intermingled with a consuming desire to include him. 

They make changes on his behalf to make things more accessible.

They make time for, ask for, and honor his thoughts, words, and opinions.

Those who know him, love him.

Those who know him have also taken the time to earn this privilege by embracing a willingness to learn, a slaying of prejudices and judgements, and a desire to step out of their own comfort zone for something (someone) beyond than selves.

The rewards they both reap and gift in return are priceless.

I apologized to my son on behalf of every person who has ever made him feel that a diagnosis—rather than their own failures—keeps friendships away from him.

I am so thankful for the friends, the irreplaceable relationships my son does have, few as they may be.

We have found friends in the most expected places and family where DNA is not shared.

For this, we couldn’t be more thankful.

As an advocate and a mom, I will never stop fighting to open eyes and smash down barriers.

I will—without apology—embrace opportunities and place my son in the midst of circles where he will be himself unashamedly while extending an invitation for the opportunity of a lifetime—his friendship.

At times, we will together feel the hurt of rejection and ignorance.

And then we will stand back up, move forward, and pour our energy into finding and delighting over the rare gems along the way.

The month of March is a heavy one for me.

In March 2014, I lost my big brother who I was incredibly close to.

My brother lived with Epilepsy from the time he was very young.

I grew up waking to the sounds of the brother who shared a room with my brother who had epilepsy yelling for help with a Tonic Clonic seizure.

I have many memories of feeling helpless as my brother seized and we wondered what the damage would be this time.

I feel like I have always known the names of Epilepsy medications and the steps of seizure protocols.

It was just a part of life. Epilepsy is what ultimately took the life of my brother.

While March brings me back to the memories of losing my brother, it also is the month that holds Purple Day—a day set aside for growing awareness and support for those who live with Epilepsy.

My experiences with Epilepsy did not end with those of my brother.

I went on to become a special education teacher to students with Epilepsy and then a mother through foster care and adoption to many children who have Epilepsy.

Epilepsy, in many forms and severities, has been a part of every single day of my life.

 If my brother were here today, I would call him up on the phone and ask him to share what he thinks the world ought to know about Epilepsy.

Since I can’t do that, I will do my best to honor his legacy and share my perspective as a sister and caregiver to those who have Epilepsy.

I have often said that while awareness days can be incredible, educational, empowering experiences, they are worthless unless a growth in awareness leads to action.

I have compiled a list of simple steps anyone can take to grow in both their awareness and actions associated with Epilepsy.

–Listen to those with Epilepsy. Ideally, those who are diagnosed with Epilepsy should be the ones standing behind the megaphone during awareness months.

Make a point to seek out someone with Epilepsy and ask them what they wish you knew.

–Stop using comments about seizures casually. It is all too common for people to toss around casual remarks related to Epilepsy: “Oh man, turn off that crazy light or I might have a seizure!” “Dude what are you doing? We couldn’t tell if you were dancing or having a seizure!”

Phrases like these are offensive, hurtful, and encourage a mindset that portrays Epilepsy (a life-threatening condition for many) in a way that is demeaning and disrespectful.

–Pause before jumping to conclusions when you hear the word Epilepsy. Epilepsy comes in many forms and severities. For many, it is life-interrupting and life-threatening.

For others, it may be less disruptive and may come in the form of occasional absent seizures or be fully managed by medication or other treatments.

Do not assume that if someone has Epilepsy, their life is in immediate danger.

Also don’t assume they might just space out sometimes or have everything under control with medication.

They are the teacher, you are student. Seek to be educated, do not assume.

-Never choose fear or avoidance first. Perhaps you are a teacher or scout leader and have a child with Epilepsy placed in your class or troop.

Maybe you have had a new employee joining you at the office and learn that she has Epilepsy.

Whatever the situation, suppress the urge to ask for different circumstances (a transfer, etc) or declare yourself unfit to be the guardian/co-worker, etc for someone with Epilepsy.

Push the brakes and choose first to be educated and then to accept this as an opportunity to learn something new and help a human being be loved, accepted, and safe.

-Learn basic seizure care so you can help if you ever encounter a situation. While taking a class about Epilepsy/seizure response (this is included in many First-Aid classes) can be incredibly helpful, you can also easily do an online search to learn the basic steps to responding when someone has a seizure.

Take a few minutes to learn these steps and then stay refreshed on them so that if you ever find yourself in a situation with someone who has a seizure, whether you know them or now, you may be better prepared to assist.

-Don’t ever, ever tease. Never make fun of someone who has a seizure of any kind. If you do so truly unknowingly, give a heartfelt apology and learn from your mistake.

-Ask how you can accommodate. If you have the opportunity to be associated to any degree with someone who has Epilepsy, ask how you can make the environment more accommodating.

For example, if you are a supervisor and hire on someone who has Epilepsy, ask to be educated about potential triggers, rest needs, seizure response needs, and other accommodations.

Then follow through with those and require others do to.

The bottom line for Epilepsy awareness comes down to this: Kindness goes a longer way than anything else and gives birth to humility, education, and change for the better of all people.

Choose to learn from those who have Epilepsy and then adjust your thinking and actions accordingly.

As Cerebral Palsy awareness month grew near this year, it was something I thought about often.

As an adoptive parent and specialized foster parent, I have cared for a number of children who live with Cerebral Palsy to all different degrees.

For some of them, it is a slight condition that barely affects their daily living.

For others, it is a much stronger force in their lives.

As I pondered what I could share for Cerebral Palsy awareness month as a mother and caregiver, I kept coming back to this idea that if I truly want to grow awareness in a new capacity.

I must find a way to place the awareness megaphone in front of those who are more aware than any: Those who have been diagnosed with Cerebral Palsy.

I presented to idea to my eight-year old son who has Cerebral Palsy and he was thrilled.

While he lives with a long list of medical conditions, Cerebral Palsy is one of his diagnoses and something we speak of often.

He—more than anyone else I know—can give us valuable insight into what it means to live with Cerebral Palsy.

Using his eye-gaze operated communication device, he and I came up with and talked through a number of questions that he answered beautifully and thoughtfully.

Some of his answers surprised me. Some of them didn’t.

All of them were fully, completely his and worthy of being listened to. The bold words in the writing below were spoken by my son in response to my questions and prompts.

I am: funny

I am: Important

I am: Smart, and (his name)

And I also have Cerebral Palsy.

Cerebral Palsy makes me feel: hurt, lazy, alone, trapped

Cerebral Palsy cannot take: My voice, jokes, God—talk to

Takes friends

I wish people were aware that Cerebral Palsy: is bossy, join (I want to be included), pain, my body not my mind

I don’t like it when people: Baby (talk to me), rude, (comment on the) Noises I make, ignore me

People say you are brave a lot. Do you like that? Do you think you are brave?

Yes. Yes. Yes. Yes.

Do you think Cerebral Palsy is part of what makes you who you are?

Yes.

My son is made up of a million wonderful, unique, incredible aspects.

He has Cerebral Palsy. He is so much more than only Cerebral Palsy.

He also knows and wants others to know that his Cerebral Palsy—as well as his other diagnoses—shouldn’t be ignored, overlooked, or avoided, as they are huge, important parts of him just like his favorite movie or his sense of humor.

He feels many things about the conditions he lives with.

He also knows they are just one piece of the incredible human being he is.

Thank you, sweet son, for writing this post with me.

Multiple times a week, I am asked about the skills, accomplishments, and abilities of my children who have disabilities and medical conditions.

Medical professionals, therapists, respite providers, social workers, etc, must know this information in order to give us the best care and resources available.

I know this.

However, these inquiries never fail to give my stomach a twist.

My children are absolutely amazing and CAN do a million things.

They are intelligent, kind, unique, talented, miraculous humans and world-changers.

They also have disabilities and medical conditions that change what their lists of physical and cognitive abilities may look like compared to others.

When doctors are asking about my children, they aren’t asking about how kind they are, how funny they are, how unique they are (although I never let someone walk away without letting them see or hear about those things in my children).

They are wondering if they can walk, if they can swallow, if they can breathe independently, or if they can perform tasks listed as standard for their age group.

When I first became a mama to these sweet children several years ago, it made my heart sink to rattle off no after no in response to the lists of questions.

Over time I realized I had to approach these encounters differently so I began doing three simple things each time someone asked about my children’s abilities:

1. Even if the professional doesn’t ask, I list as many ways as I can think of that my children are wonderful that have nothing to do with physical abilities or medical conditions.
2. If my child is present, I direct the questions to them as much as possible. “What do you think, honey? Are you able to eat by mouth? Yes or no?” Simply including my child in the conversation-whether they can verbally answer or not-reminds the asker that they are speaking about a real, living human who has thoughts and feelings of their own.
3. I learned and implemented the power of the word yet.

It is one thing to answer a question with the word no.

“Is your child able to walk without assistance?” “No.”

Adding one simple, three-letter word, however, evaporates the finality and lack of hope in both the question and answer.

“Is you child able to walk without assistance?” “No, not YET.”

I add the word yet to just about every question asked, even the ones that will likely never be answered with a yes.

Adding a yet to my answers reminds me, my child, and the professional that we don’t get to decide what my child is capable of and there is always hope for improvement or mastery in the future.

It represents my commitment to never stop encouraging and challenging my children to grow, develop, and be the best they can be in whatever ways fit their unique personhoods.

Yet: I think it is a concept the world needs much more of.

What a world it would be if we could all view ourselves and others as mountains of possibility, beacons of hope, and exceptional human beings crafted with the ability to never run out of ways to gain, grow, and rise closer to our God-given potential.

As a mom to multiple little ones who have medical needs and disabilities, I like to think that I never give up.

I have become a fighter—a mama bear—and I am willing to stand up to anyone and everyone who tries to put unfair limits on my children and their abilities, opportunities, and quality of life.

I do not accept no as an answer when it comes to my children and what they want, need, and are entitled to as human beings full of priceless worth.

However, in the midst of all this persevering and advocating, a difficult question I have come face-to-face with recently is this: What do I do when the answer really *is* no and I cannot change it no matter how much I, or my child, may ache to?

This kind of scenario is painful to even allow my mind to think about.

And yet, it is very much a part of reality at times for me, my children, and our family.

As much as I wish I could change absolutely anything for my children, there are certain situations or circumstance I simply cannot alter—at least not at the current time–no matter how hard I fight or how committed I am.

So what is left to do? My therapist (if you are a caregiver and do not see a therapist of counselor, I cannot recommend it enough) recently shared some perspective about acceptance with me.

He explained how acceptance is just that—simply accepting that which we cannot change.

The essential realization when it comes to acceptance is everything that acceptance is not and cannot be.

It is not approval of what is happening. It is not giving in. It is not agreement.

As a mom I must step into the unique and sacred role of modeling acceptance for my children while also leading them onward without giving up or giving in.

Together, we accept their diagnoses as best we can.

Together, we sometimes have to accept lack of options available for healthcare or therapies, even if just for a season of life.

Other times we must accept the inconvenience of adaptions that don’t quite measure up to the experience my child deserved. 

At the same time, acceptance is never our habit or our norm.

Acceptance is not something we take on lightly or without full exploration of options.

But sometimes, acceptance cannot be avoided if we wish to keep moving forward.

My precious children must face some agonizing realities about their bodies, about their comfort, about society, about their futures…about many things.

But for each difficulty we cannot change and therefore must accept, there are hundreds of things we do have the privilege of refusing to accept and working for until the change comes.

It takes wisdom to discern when acceptance is the single remaining option and when it is not.

May we as caregivers be willing to never accept that which we or others can change and gracefully accept that which we cannot—perhaps coupled with the hope that someday, we can.

Recently, my son and I were at a doctor’s appointment during which a couple surgeries were discussed and scheduled for my son.

Of course, surgeries are never a fun or preferred event for any child.

As the surgeon discussed what would take place during the surgeries and then had me sign consent, my son became withdrawn and angry with me.

He heard the surgeon describing surgeries that will be painful.

Then my boy heard me—his mama—say that I agree and we should go ahead and schedule these scary procedures.

My son voiced his disapproval using his communication device.

He told me to leave him alone. He told me he didn’t like this.

He refused to look at me and repeatedly asked for his daddy.

Throughout our entire discussion, the surgeon and I included my son the best we could in the explanations and questions.

However, when it came down to it, my son would have said no to surgeries that as his mother, I had to say yes to.

When the surgeon left the room, I turned to my son: “I’m sorry buddy. I know this isn’t something you want to go through. This has to happen though, and I believe it will be better in the long-run. I heard you disagreeing and I’m sorry you had to lose your voice for this particular decision.”

As soon as I said the last sentence, I caught myself.

My son had not lost his voice. Not a single ounce of it.

Throughout the discussion, my son was included.

We heard his disapproval. We could empathize with his frustration and anxiety.

His anger toward me was heard throughout his communication loud and clear.

My son has every right to feel and express each one of these emotions and thoughts.

It made me so very thankful for the device my son has and the hard work we have put in to make sure his voice (which he has always had, device or not) has a way to be heard by all.

Even though my son was not given a choice about surgery, his voice remained and was still heard and valued.

In all of our lives, there will always be times where having opinions and the ability to voice them cannot change an outcome.

There are often times that we as humans have to swallow hard, grit our teeth, and press on into situations we wouldn’t prefer.

That’s where bravery is found. It’s simply part of life.

One of the most beautiful things about being human is that everyone of us still has a voice.

The ability to share anger, disagreement, fear, frustration—all those things—is an absolute right that we are all entitled to.

It really is a beautiful thing.