3 Questions Every Special Needs Parent Faces

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Donning the title of “Special Needs Parent” inevitably means there will be questions from family, friends, neighbors, educators, and complete strangers; questions that you never imagined encountering. Although frequently good-intentioned and largely benign, these 3 questions completely stopped me in my tracks, and could send me reeling for hours. After reflecting upon these questions and my reactions to them, I can safely say I face them with ease; time and perspective really were my friends here.

1. “Do they know what causes it?”

Nothing killed me more than this question. Concerned, well-meaning friends and family members would ask this at some point during our conversation when I broke the news of my son’s diagnosis. This question just, hurt. It wasn’t meant to hurt. When something happens, people want to know why. I think that by asking what caused his affliction, there is an implication that there was something that could have prevented it. Clearly, every disease/disorder process has a root etiology, whether it is known or unknown. In the case of seizure disorder, certain types can be traced to a very specific part of the brain, and epilepsy itself is typically a result of some type of neurological “misfire” in the brain. Now, the “cause” or, “why” this occurs is slightly less understood. I think this question may come from a place of fear (if there is a known “cause” that can be ruled out from their life, their child is safe) or genuine curiosity. At this point, I’ve come to understand that my own feelings of hurt and confusion were projected upon the people asking me this question. Deep down, I wish there was something I could have done to prevent my son’s disorder. I realize now how flawed and fruitless that type of thinking was, but at the time, this question essentially opened up a wound for me.

2. “Is there a cure?”

Given question 1, question 2 seems to flow quite naturally. But as a child of a special needs parent knows, there is rarely a “cure.” If there was, we wouldn’t be a special needs parent. Typically, we are provided with some array of treatment options. In our case, our son needed medication to treat his seizures, and we were extremely lucky in finding a medication that completely controlled seizure activity. While we realize how fortunate we are, seizure medication can come with a whole host of side effects. Drowsiness, changes in appetite, slower processing, and mood changes are issues my family deals with on daily basis. While my son looks “fine,” he is working harder to remain awake and alert than other children his age. When I try to imagine how that feels, I feel agitated just thinking about it. So many of our loved ones were relieved to hear our son wasn’t having seizures anymore (as were we, of course), but that wasn’t the only battle my son had to face, and I found that many just did not understand, or truly consider that factor. So, although medication is a great treatment option, it wasn’t a “cure.”

3. “Will he get better?”

There are many variations of this question (e.g., “Will he always have seizures?”). Generally speaking, each of these questions sort of leads into the next one. This particular type of question never bothered me, but I found it tricky to answer. I found myself rambling on and on, and stumbling over my words. I finally found my “go to” answer, which is typically along the lines of: “His neurologist told us that approximately 70% of children with this type of epilepsy outgrow it, so we are optimistic.” Our son has also been diagnosed with ADHD most recently, and definitely has a greater chance of being something that may have to be managed throughout his lifespan.

Each one of these questions has been part of our innermost thoughts. But when someone else is the one asking, it makes everything more real. In the midst of a diagnosis, we are feeling vulnerable, confused, drained, shattered- the list goes on. Among all of these emotions, the last thing we want to feel is judged.

https://quotesgram.com/judgement-quotes/

 

The Best Mom

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My mom is the best. No, really. Don’t a lot of us feel that way?

Some of us were lucky to have a fantastic Mom. Yes, Mom with a capital M. She deserves that capital letter, doesn’t she?

From my Mom, I learned the infinite strength of a woman. An unwavering pillar through the many storms of life, she was able to get through everything, even when there wasn’t anyone else to lean on. My needs and the needs of my brothers were always put before her own, no matter what. We always had clothes on our backs, food on the table, and a listening ear to hear the highs and lows of our days.

Does this sound like your Mom? Maybe. Maybe not. Maybe the narrative you would write about your Mom would sound different from mine.  Now, I could dive into the minutia of day-to-day living, which would probably serve to highlight the fact that all of our Moms are/were different from each other in some way or another.  The bottom line is that many of us feel our Mom is best.

When I became a Mom, I began my own quest to become the best Mom to my own child (now children).  As many new Moms do, I (subconsciously or otherwise) did what I knew from my own Mom. Sure, I read, I researched, and we all have things we want to do differently. But, as those of us who have the best Mom know, we also use that barometer that we grew up with as some sort of gauge as to how we might be doing at this new role of Mom.

I found myself falling short. Quite often.  I had so many expectations based on how I was raised, that I never felt I could measure up.

You see, I had always been an independent person. Self-directed, self-motivated, and out to conquer the world.  The sky was the limit, and I was driven throughout my life to succeed.  I did well academically, and pursued a very rewarding and challenging career. How could I be the best Mom if I had all of this going on in my life? How could I push all of this aside to raise this tiny human I was now responsible for?

So I put things on hold to a large degree. My career took a back seat to being home with my son. I stayed home, but honestly couldn’t wait to get back to work in some capacity.  I received praise and encouragement from family and friends, which further solidified the notion that I was doing the “right” thing. Speaking with my Mom, she revealed that her happiest years were when she was able to be a stay at home Mom. I couldn’t help but feel an incredible sense of guilt.

I wouldn’t say my happiest months/years were the portions of time I was mostly a stay at home Mom. Not because there weren’t incredibly happy times, or countless moments when I realized that life is fleeting and I wouldn’t get these years back. There were so many wonderful moments during those times, and I don’t regret them at all. I just wouldn’t characterize them as my “happiest.” It took me a long time to be able to admit that.

But I feel compelled to admit it. I am someone who doesn’t just enjoy working, I thrive in that environment. I just don’t feel whole unless I am using my professional knowledge and skills, and constantly adding to that skill set.  I can finally admit that this is the way I am wired, instead of feeling that there is something wrong with me.

My children still occupy my thoughts countless times a day. Their health, education, and overall well being are my priority, so much so that I tend to overanalyze it at times.  I enjoy cooking for them (most nights), reading to them, taking them fun places, and just being with them. I enjoy it more tenfold now that I am leaning back into my career.

Many of us feel we have the best Mom.

So who’s right?

We all are.

Our Moms are all so very different, and yet they are the best. They come in all shapes, sizes, and colors; all different backgrounds, personalities, and habits.

I think if we stop trying to fill the shoes of other best Moms, and take good care of our very own shoes, we can all be the best Mom.

The Elephant in the Room

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“So, he is having seizures?”

“Yes, those are seizures,” says the neurologist reviewing my four-year-old son’s video EEG. He continues to look at the screen, clicking on certain areas after a couple of seconds.

“You see those?”

He points to squiggly lines (wave patterns) that appear to peak very high. “Those waves are seizure activity, they are irregular.”

Seizure activity. Irregular. I replay these words over in my mind. An odd sense of relief washes over me. Confirmation. Something is going on with my son, and that something is seizures. The elephant that has been sitting on my chest for the past few months has momentarily gotten up to allow me to breathe- but it doesn’t last long.

“He needs medication,” the neurologist says. The elephant sits back down.

“What kind of medication?” I ask. I look at my son, dozens of electrodes hanging from his gauze-wrapped head, watching T.V.; so young, so healthy before all this happened. What happened?

The neurologist recommends a medication, which will be the second medication my son will try. About one month prior to this hospitalization, it was suspected my son was having seizures. He began having strange episodes of head and neck twitching paired with being unresponsive. We took him to the emergency room, as we couldn’t get a consultation with a pediatric neurologist in less than six weeks otherwise. In the emergency room, a nurse witnessed one of the aforementioned episodes, and a one-hour EEG was ordered. Although the test came back normal, the neurologist on call believed that our son was having seizures, and prescribed medication.

Returning home from the hospital the first time was…frustrating. My son continued to have- what we believed to be seizures- everyday, despite the medication. We diligently kept a log, which included medication time and dosage, and described the episodes in depth to the best of our ability. As per the neurologist’s recommendation, we made several frantic attempts to record the episodes. Although we were doing that right thing by collecting data, it was simultaneously heartbreaking. It felt wrong. One of us would be holding and comforting our son while the other would be grabbing our phone to try and record it before it ended. Each dose of medicine made me feel like I was conducting a science experiment. Would it work this time? Every time he had an episode, no matter how calm we forced ourselves to appear, our world stopped. The air was sucked out of the room in an instant and all that was happening was my son suffering. It was all-encompassing, overwhelming, and draining.

When we were able to see a neurologist for an office visit, he was not convinced that my son was having seizures. “Why aren’t they motor tics?” he asked. My puzzled look gained further explanation. “Some children experience motor tics, and they don’t need to be medicated unless they are severe.”

We left the office so confused that day. Does my son have Tourette’s? Will he get better? We were instructed on how to wean him off the previously prescribed medication and we scheduled a 48 hour EEG.

Each minute waiting for an EEG was an eternity. My son continued to have episodes and we became increasingly worried. Why did they come on so suddenly? What if he had some type of virus? What damage was being done? What is he missing each time he has an episode? We made the decision to take our son to the ER again.

A million questions to answer all over again. This time, an ER doctor witnessed an episode and ordered a battery of tests. Spinal tap, sedated MRI, blood tests, and 48 hour EEG. This was the visit where we got confirmation that my son was, in fact, having seizures.

The type of seizures my son was experiencing are called “myoclonic seizures,” which are generalized (“whole brain”) seizures that involve muscle twitching. We were told that there is a good chance my son will grow out of these seizures as he gets older, but he will have to be medicated for at least two years.

Leaving the hospital the second time felt like a fog had been lifted, but someone was waiting there to punch me in the gut. Every morning, I would get up, elephant firmly planted on my chest, waiting for the next seizure to occur. How long would it be from now? Five minutes? Five hours? How long would it last? Will this new medication stop my son’s seizures?

What will make this elephant get up?

“I Can’t See Without my Coffee”

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Do you remember the first time you tasted coffee? It might have gone something like this:

“Mom, can I have some coffee?”

“No.”

“Dad, can I have some coffee?”

“Here.”

Or, at least, that’s what happened at my house.  At last, I got to taste the most coveted (daytime) beverage in my entire household.  Children weren’t allowed to speak in the morning until Mom and Dad (or at least Mom, or Dad) had consumed a minimum of 1 cup of coffee. If we did speak, all responses were some form of grunt or comment along the lines of, “I haven’t even had a coffee yet,” “Let me have my coffee,” or my personal favorite: “I can’t see without my coffee.”

As I took a sip of the warm, magical potion that transformed my parents into functional human beings, I was sorely disappointed.

“So?” Dad asked.

“Yuck,” I answered.

Dad smiled and finally got me off his back.  I vowed never to drink coffee, like we all did.

Then, life happened.  Jobs, college, grad school; going out all night and needing to be awake for jobs, college, and/or grad school. Kids, children, special snowflakes, spawn, those tiny creatures for whom coffee was invented.  Now, coffee is my plasma.  I owe coffee my life. It is the only thing that I can legally consume that allows me to safely operate a motor vehicle before 8 AM.  That bitter, brown liquid is now very much a part of who I am.

Here come the disclaimers, as well as the purposes of this blog:

1. I am NOT a coffee connoisseur.  I am an average female working professional with 2 kids, a husband, a house, a cat, and whole lot of issues.  Any opinion I give is just that – an opinion.  I am not a qualified expert. Which brings me to #2…

2. Why read this blog? Because I’m funny, I’m real, and I want to bring a blog to my fellow 20- and 30-somethings (I’m 29 and 1/2, so I’m playing both sides of the fence here) that is comforting and keeps us going, just like a good cup of coffee (awwww).

3.  I want to give back and spread positivity.  Big or small, I want to make a difference.

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My husband’s portrayal of me at the moment.  He is being kind.

Please comment, question, or share a random thought.  Bonus points if it’s funny, makes me think, or makes me cry.  We all need a good cry sometimes.

I can't see without my coffee