In Praise of Progress

Surprise! Change can actually be good.

Another school year is in full swing in our household. I now have a fifth and second grader, a kindergartner, and a preschooler. Three of my kids are at the same school, and my special needs son is at a different school that offers the services he requires. This was not my initial choice, but circumstances beyond my control necessitated this decision.

Can I confess that I was so anxious about my son being in a different school than his sisters? We had talked extensively about how great it would be for them all to be in the same place every day, how they would pass each other in the hallway and such. For me, I felt comfort in thinking my son would have a built-in support system in them. He would have at least three advocates among his peers, and this both warmed my heart and eased my worries.

Imagine the disappointment when I realized he would spend his days elsewhere, without his siblings.

Now, the school he attends is a good one; the staff is fully stocked with special education caseworkers, therapists, and paraprofessionals. His teacher is enthusiastic, and his classmates seem very sweet and inclusive-minded. No doubt they’re encouraged to engage with my son by their teachers, which is fantastic.

And yet, my heart sank when I committed to him attending that school. Why? The objective facts – the proximity of the school to home, the dedicated staff, the small class size, etc. – weren’t the problem. My mixed emotions were. I was worried about how he would fit in, I was nervous about him making friends (or even being willing to socialize with his peers, something he’s struggled with in the past.

Maybe I can’t help worrying because I’m his mom. Maybe it’s because I know where his verbal skills have hindered him in this kind of setting. Maybe I’ve set too high a bar for his educators. Maybe I have a hard time seeing him do things independently (meaning, without me).

But maybe I should learn to trust my own kid a little bit more.

When I explained to my son why he’d be attending the other school, he was quiet but listened intently. I told him I was sorry he wouldn’t be with his sisters, but hopefully, he’d recognize some teachers or kids from his preschool class, or make some new friends. I assured him he’d learn lots of interesting things, have help with reading (he wants to learn so badly), and get to eat hot lunch. He grinned so big at that last revelation.

On his first day of school, my stomach was in knots. I dropped him off, spent way too much time explaining what was in his backpack to his para, and watched sadly as he went inside. As soon as I got in the car the tears started falling.

However, on his return later that day, I greeted him at the bus with a smile. I was determined to put a positive spin on whatever difficulty he had encountered. But the strangest, most unexpected thing happened when I asked him how it was. He simply said it was good. The teacher is nice. There is a kid at his table who also likes Batman. He got to have two snacks. And yes, he ate everything offered for hot lunch.

Turns out, there were no difficulties for me to positively spin. There were no rude questions or comments from peers to email the teacher about. My son had a pretty normal, fun day in kindergarten. I felt a little silly for having worried so much. This was a big change for both of us but like my son said, it was good. The change was good.

Disabling the Labels

Do we need to revisit the terms we apply to individuals with physical impairments?

There is a lot of online conversation currently regarding the “proper” labels to affix to our kids’ neurological or physical conditions. Even in typing that sentence, I’m struggling to find completely objective terminology! The debate seemed to start with whether the term “disabled” is still appropriate and acceptable universally, or whether “special needs” ought to replace it. From there, conversations spiral into the introduction of several terms – neurodivergent, additional needs, chromosomally atypical, and on. The concern of parents seems to be two-pronged: which label should be adopted for government services, and which should be used within society at large.

Let’s talk about the term “disabled” and why people prefer it, or not. This term has long been used to describe an individual’s gross motor impairments, whether they are neurologically or physically based. It is the term most used within government agencies (at least in the U.S.) that provide support and services to these people. Some would argue that this term – given its longevity and the general understanding of it by those outside of its scope – should continue to be used universally.

However, many people take offence at the term “disabled” because it implies that, based solely on physical facts, a person is not able to do what others can. Within our community, there is an understanding that this is false; our loved ones born differently are fully functioning and capable in many capacities. So, while their physical attributes might differ from the norm, there is a good reason not to pigeonhole them with a value-laden term.

Now onto “special needs” as the preferred language. Why do many people feel more comfortable with this terminology? For one, it is broader, covering many different types of needs: physical, emotional, social, educational, sensory, etc. The flip side is that if you start with a broad term, it necessitates more explanation. And this will occur nearly every time you use it. Also, many parents object to the word “special” because they feel that, since all humans have imperfections, their children really aren’t special at all. Rather, they are just like any other peer, with varying needs at different times of life. Furthermore, some believe “special needs” has a childlike connotation, and using it in one’s adulthood feels wrong. The final terms being discussed are more scientific: “neurotypical” and “neurodivergent.” But again we run into a problem here, namely that many individuals’ needs are not brain-based in nature, thus negating the universality of the words.

So, essentially, we’re right back where we started. There are no true general terms to describe our community’s population. And in our attempt to find one, we can lose sight of why we’re looking in the first place. What we really desire is for our diverse community to be accepted despite their differences, not because they are easily understood by the labels we attach to them.

Personally, I go into a conversation with a curious stranger with no expectations. They may know little to nothing about the conditions affecting my child, and it is my duty (and pleasure) to educate them. It doesn’t really matter how I choose to explain my son’s physical or social abilities. The important outcome is that my son’s mere presence in the world as someone outside the norm is recognized and normalized.

So, use the terms you want. Don’t get hung up on how they are interpreted by that outside of our community. Don’t get hung up with other parents or caregivers on their preferred terms either. Do keep participating in the world, advocating, and educating. The labels will disable themselves.

Living Life to the Fullest

 What does this mean for a special needs person?

We live in a time when we’re told “Anything is possible” in regards to our life path. Our kids are often asked what their dream job is, and their answers are encouraged and nurtured – no matter how grandiose they are. You want to be an Astronaut, Circus Performer, Race Car Driver, President, Professional Athlete, or raise Kangaroos for a living? Well, baby, it will be a lot of work, we tell them, but you can do anything you set your mind to!

Then they start school and, within a few years, are being coerced into more practical positions: a nurse, a code writer, a mechanic. Or they’re set on a path by expectant parents toward perpetual education: go to university, then graduate school, then teach.

Though we start them off with best intentions, cheering them on in their chosen endeavors, it doesn’t take long for our kids to find out that they are simply not great at everything they try to do. This is true of all kids, not only those with additional needs. And of course, it is true of all humans in general. Simply put, we are not all going to be geniuses and multi-talented ingenues.

So what do we do as parents when our kids face this reality? After all, we’re responsible for telling them they could “do anything they set their minds to,” right? We tend to look like hypocrites if we agree with them, or liars if we don’t. It’s a merry-go-round of trying to nurture them emotionally while teaching them the hard truths about life. It’s our own fault, really, if we’ve raised them with an eye firmly fixed on “realizing their potential” within a career or vocation.

Now let’s contrast the encouragement given to a child with special needs. I’ll use my own experience with my son as an example.

My son has dyskinetic Cerebral Palsy and Hypotonia, both of which affect his core strength, coordination, speech and motor ability. This is a result of a brain injury at birth, so it’s the only way he’s ever been, or anyone has ever known him.

There have been teachers and the occasional well-wisher along the way that have asked, “What do you want to be when you grow up?” But, for the most part, people (including myself) avoid this kind of conversation with him. There are a multitude of reasons for that, but many boil down to the obvious fact that his motor impairments will likely exclude him from many of the more imaginative paths kids usually profess. Could he be a firefighter in some capacity? Maybe. But the kind that runs into a building and carries people to safety? Probably not (he doesn’t walk, for starters).

So how do I encourage him? It is vital that I do, and that it’s done with sensitivity and wisdom.

When we talk about the future, I focus the conversation on his character, not his apparent physical abilities. Could he do this or that in life, sure, but more importantly, what kind of person will he be? Will he take risks, be sincere, continue to persevere despite setbacks? Will he be a truth-seeking person, a diplomatic friend, an objective listener, be comfortable with humility, and have a love for others? These are the developments I care about.

Each of our children, regardless of their neurological or physical condition, has the potential to become the person described above. This is the potential we should encourage. Reaching for this is how they live a life to the fullest.

It’s Not Easier…But It Is Better

The diagnosis. The plans. The equipment. The routines. The compromises. Everything that comes along with your very special, neurodiverse child adds a degree of difficulty. Am I wrong for saying that? Bear with me. I know first hand that this life is more difficult, but I also know that it’s better.

From the moment you lay eyes on your child, you know you’re willing to sacrifice anything and everything of yourself for them. That is true of ALL our children, to be sure. And with our special needs kids, there is a twinge of knowledge, even from the very beginning of their lives, that they will need more, require more sacrifice from us, parents and caregivers.

I’m here to tell you, that is a wonderful blessing!

Some of us will never see our former plans come to fruition, whether that means with a career, travel, starting a business, solving a global issue, whatever it is. And that’s ok. In fact, it’s better than ok; it’s both necessary and inspiring.

Do you know what this world needs more of? People who are willing to sacrifice their own needs for those of others. And when you’ve already gotten a taste of this mindset in an immediate way, you begin to see how you can convey it on a larger scale.

Every time you cancel a plan or reroute a decision to accommodate our most fragile and complex human beings – our kids – you are becoming more empathetic, more selfless, and more compassionate. These are cherished gifts we should all seek to practice being thankful for!

In the past couple of years, there has been a social movement to encourage more “kindness” in the world. We’ve all been encouraged to practice “random acts of kindness” toward strangers. That is a good place to start with practicing sacrifice, but we can go further. What if we practice intentional acts of sacrifice? If we intentionally look for opportunities to be sacrificial, we will find them.

We can commit to making long-term connections with other neurodiverse families. We can gently educate neurotypical acquaintances on inclusion. We can encourage local businesses to make small changes that increase accessibility. When we put our own comfort on the line initially, which can be stressful and scary, we will become more comfortable with doing so.

That is not an easy way to live, but it is better, more rewarding, and very much loving to our kids.

Who Knew?

Who knew I’d choose to have a third baby? Who knew the pregnancy would be lovely and enjoyable? And who knew your birth would be complicated, require equipment that failed, and as a result you’d have HIE, a brain injury and, later on, cerebral palsy and epilepsy?

Who knew you’d have such delightfully, chubby cheeks and a glowing, wide smile?

Who knew your head would always hang to the right side because of torticollis?

Who knew you’d start therapy at a mere two weeks old? I didn’t know you’d have careful, skilled, gentle therapists right from the start. I didn’t know you’d be so cooperative. I didn’t know you would work so hard for me to see tiny steps of progress, things you didn’t, you couldn’t have noticed at all.

Who knew you’d smile every day, belly laugh, and play with other kids with reckless abandon? Who knew your sisters, especially the one closest in age, would love you so tremendously? We couldn’t know you two would become best friends. We couldn’t know you’d teach her, and her you, and that it would happen unconsciously and organically, without persuasion from parents.

Little did you know that doctors said you wouldn’t sit up, crawl, stand, move independently, be able to do 1/10th of all you can do now. You don’t know how many hours I prayed for you to grow strong, or for the strength to help you.

You will never know how many tears of pain, joy, relief, and bitter-sweetness have been shed on your behalf.

Who knew you’d be nearly six when you learned to stand on your own?

Who knew you’d still be in therapy, cracking jokes and having a blast, or sometimes throwing toys and screaming ‘no’?

Who could have known how darn persistent you are (and how I used to call you stubborn, then switched to this more positive term)?

Who knows how long you’ll be in therapy, but I do know you’ll never stop challenging yourself.

Who would have known you’d give my life meaning, in every way and in every day?

Do you know how much I cherish you? Well, now you know.

Nonverbal But Still Outspoken

  • An ode to all the kids using atypical forms of communication

Do you have a child who is nonverbal, or uses an atypical form of communication? Chances are, they are one of the the loudest in the room! I don’t mean by decibels – although some of our kiddos definitely use volume to express themselves, too. I’m talking about how they use every method and mode available to speak what’s on their minds to the rest of us. They are nonverbal, but outspoken!

My son Henry does talk, however due to cerebral palsy and low muscle tone in his core, his speaking ability is impaired. So he also uses a communication tablet (also called a “talker” because it essentially talks for him) to fill in the gaps with vocabulary or concepts when he’s not being understood verbally. But communicating non verbally is so much more than using a tablet.

Henry uses his hearing skills to such a high functioning degree, it can be alarming.

If I’ve said it once, even if I was in the other room “out of earshot,” but the conversation concerns him, you can bet he heard me. He also listens intently, in a way others don’t. I tend to babble on and talk to myself, but my son acts like it’s always a conversation with him. He pays attention to inflection, tone, the anxiety in my voice. He can tell if I’m upset, if I’m excited about something, or if I’m trying to talk out a solution to an issue we’re facing. The type of listener he is says a lot about his personality. Henry is an active listener and, once he’s processed what he heard, he responds accordingly. He’s a compassionate soul, being joyous with the joyful and mournful with those mourning.

My son also depends on his eyesight to communicate. If he glances at someone and turns his eyes down, I know he’s uncomfortable. If his gaze lingers on a person, building, game, toy, friend, he is sizing them up, and deciding how he wants to interact. Henry is an expert at rolling his eyes back and giving side eye, it’s hilarious! I can even tell which of his respite workers he thinks are particularly pretty; he is not shy about giving puppy dog eyes at them!

Henry even uses his memory to communicate what he thinks was worth recalling.

If I ask him to remember an event from school or something a family member said to us two years ago, his memory starts working on the question like a supercomputer. I can only imagine what treasures of memories he’s got locked away. He communicates his love for family, friends, teachers by remembering little things about them, about their character.

And he remembers everything; sometimes this is a blessing, sometimes a curse! Heaven help me if I’ve suggested an outing he’d enjoy and then forgotten about it. Trust me, the boy will remind me!

Personally, I think my son – and everyone’s child with speech impairments – is amazing with how he perseveres every day in order to be understood. Henry is patient, persistent, and can melt you with a smile. It’s both what he says out loud and without words that make him so lovable.

Can a depressed caregiver really care?

Last month was Mental Health Awareness month, it’s important to talk about how caregivers live with their own mental health issues.

In the interest of transparency, I want to share my own struggles with depression, in the hopes my experience might speak to other parents in a similar situation.

Long before I was a parent, let alone that of a special needs son, I have lived with chronic depression.

It started in my teen years, out of the blue, and despite the efforts of well-intentioned parents and psychologists, I never got a handle on how to cope with it.

Later, in college, I suffered a severe bout of situational depression for which I was prescribed both an anti-depressant and anti-anxiety medication, the former of which made me numb to any emotion, and the latter gave me terrific nightmares.

After about a year, I weaned off the anti-depressant and was fairly high functioning, though not under the care of any medical professional.

I thought I had “beat” my illness.

Allow me to pause here and acknowledge that the stigma of mental illness is still very real and present in modern society.

Recent years have seen an uptick in awareness and acceptance of them within certain communities.

But, awash in free society is the notion that mental disorders are atypical, foreign, tandem with odd behaviors, and generally inconvenient.

And, despite our self confidence that we are not influenced by societal beliefs, the reality is they play a part in our decision making whether we like it or not.

Back to my story.

I was in my early twenties, living with my sister, and working as a caregiver for children and adults with disabilities.

My clients ranged from “developmental disorder” to autism to PTSD to ADHD and so on.

I loved my clients and tried my best to give them each what they needed in me: a companion, a taskmaster, a teacher, etc, and tried harder not to get attached to them (spoiler: I failed).

My job was challenging and sometimes heartbreaking, but I loved it and cherished being able to help my clients for as long as I could.

About eight months into this job, my depression started to eat at me again.

No doubt the combined stress of my job and being an empathetic person by nature was contributing.

Around my 25th birthday my hair started falling out.

Within a month I was bald, and this sent me into another downward spiral, thinking my value was in something as superficial as my appearance.

Funny how life’s earlier events seem to have been pieces to a bigger puzzle I couldn’t see at the time.

This cycle of being pretty functional, then experiencing an event I couldn’t cope with, leading into several months of hopelessness, slowly climbing out of it, functioning, then crashing down again happened many times over my young adult life.

I still didn’t believe that I was really ill, and in need of professional care, as well as self care (like eating well, sleeping normally, journaling my thoughts).

It wasn’t until just before my 40th birthday that I sought medical treatment for my ongoing depression, finally acknowledging that it wasn’t going away by itself, or with time, or with my willpower.

Now let me draw a parallel, that these statements are true of our dear ones’ conditions as well: the disabilities won’t going away by themselves.

Our kids won’t “grow out of it” as some might suggest. And all the love and desire we as loving caregivers have for them won’t make them wake up neurotypical one day.

But in the end, none of that really matters, does it?

What society at large thinks about our special needs fellows doesn’t matter either.

We are who we are, and we’re not who we’re not.

We can suffer, we can have pain, we can not succeed in certain measures, we can be seen as atypical, odd, and inconvenient.

We live our lives, and love the ones we care for, fragile that we both are. That is what matters.

So, can a depressed caregiver really care? Resoundingly, loudly, I assert yes.

She may not be able to keep all her emotions about caregiving to herself, she might cry more, or need more verbal assurance, or to have things repeated (often).

But does she care about who she’s caring for? Absolutely.

(Note: I’m now under the care of a good physician, whose approach to my mental health is holistic and measured; he urges me often to go easy on myself, do a little at a time, take breaks, adhere to schedules as best I can, and not get too wrapped up in always performing a certain way. I think this is good advice for all caregivers, too.)

Special needs families: Social Media Overhaul

In this social media obsessed day, it’s easy to get caught up on someone’s Instagram feed or Pinterest page and question everything about your parenting technique (and, do I even have a technique?) because someone else is making beautiful crafts and baking and taking their kids to all the best museums.

Am I failing my kids by not making their lunches into picture-worthy Bento box treats?

Frankly, I’m more concerned that they eat fruit most days, and my aspirating son doesn’t have anything too dry to eat.

Am I failing my kids because they aren’t seeing where every single culture around the world is at right now?

I’m more concerned that they learn to love and help the kids in their own neighborhood and city.

Am I a failure of a mom because I didn’t shower in a couple days, and my perfect seasonal outfit is sweatpants and an oversize sweater?

Do I sound a little bitter? Maybe I am.

Maybe I am a tiny bit jealous of the Instagram moms who can accomplish all these things.

Maybe I am jealous of the excess time I had before my son was born with cerebral palsy. Maybe I wish I could do everything, be everything to all my kids.

The reality is that there is only so much time in a day.

I try to spend a little quality time with each of my children daily, but sometimes I fall flat.

My son gets extra attention by default; he needs me to listen longer because he is trying so hard to be verbal.

It often takes me six times hearing it before I process what he’s saying.

He also needs extra time to go up the stairs, to be put in and out of a structural vest, his AFOs, his wheelchair.

Sometimes it’s all I can do to promise them that “maybe tomorrow” we will sit down together to do that puzzle, to color in a book, to paint our nails.

Or I try to do one of those things while putting someone to bed, or reading a story, or feeding my son.

I’m honestly not the best at multitasking though. Someone always feels slighted.

I’m sure my kids wish they could go to all the museums, too, and do all the crafts, and bake all the beautiful Pinterest-pinned desserts.

I’m sad I can’t give them those things, but the truth is I cannot be all things to all people, all the time. It’s not realistic!

So what’s a modern mom to do?

The crucial thing is to stop comparing our lives to someone else’s.

Sounds easy, but it isn’t (especially in the U.S.). It’s in our nature to compare to one another, but just because something is in your nature does not mean it should be given into.

We simply must reject the idea that we need to be like someone else.

We need to embrace our differences and proudly jump into the social waters, ten minutes late, with all our extra equipment, and post about that.

The more posts about our reality are out there, the more they are seen and read. A

bove all else, our community is strengthened by seeing our stories published, and that is powerful!

Getting Everyone Involved

Creating a more inclusive world is everyone’s job.

Some of us chose to do it, some of us didn’t, and others need persuading that they should.

For those who chose to make inclusivity a priority they’ve brought on themselves a difficult task.

They don’t necessarily have the personal experience to draw upon, which can make their arguments less emotionally appealing.

On the other hand, those of us with a special needs family member can be overwhelmed by our emotional ties, often making others feel uncomfortable when we talk about issues on the subject.

And without an intentional choice to learn about special needs nor a personal connection to them, it can be challenging to be on the receiving end of an education on the issues.

None of us has an easy time learning how to advocate. But we can get better at it.

As a special needs professional, such as a therapist or special ed teacher, you can use your knowledge to educate parents of other students or speak directly to children about the physical differences of people.

Your expertise can be very helpful to those outside of the special needs community, especially when you prioritize acceptance of physical differences and the value of every person, no matter what they can or can’t do.

As a special needs parent or caregiver, your experience is your strength.

Tell stories, of every kind: Stories of struggle. Stories of plateaus or goals met. Stories of pure joy. Stories of the mundane. Tell them all.

If we share more of our world with the world at large they will see that we are an important part of it and that we’re not going anywhere.

If you are in the third group, those who need pure education about inclusivity and the special needs community, please be patient and try to listen.

Just as you desire to be acknowledged and accepted, so do we.

Above all else, do not pity us.

We do not see our belonging to this community as a burden, we view it as a gift.

You don’t have to understand that, but we appreciate when you hear us say it.