Author Archives: Laura Matheos

Dec 19

You Matter

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MC900434914-1If you’re reading this, chances are you are mourning the lives lost in Newtown, Connecticut.  As the nation begins to emerge from shock and horror, as we pass into a phase of soul searching and debate over gun control and mental health care, dozens of teachers from Sandy Hook Elementary School will start the new year by walking into a school in the neighboring town of Monroe and do something unfathomably courageous. They will greet the hundreds of children who must return to school for the first time since the shooting. They will give reassuring hugs, they will keep a keen eye out for both physical and emotional well-being, they will dedicate every ounce of their being toward making the world right again for those in their care. They will fight the tears that threaten to gush forth, they will suppress their own sorrow and fears so that their children might eventually learn to feel safe again.

I cannot imagine the courage these teachers will have to muster. But I can imagine the love and commitment that drives them. It is the same love and commitment all caregivers have for those who need us.

There have been numerous calls to action to honor those whose lives have been forever altered by this nightmare, most notably Ann Curry’s call for everyone to perform Acts of Kindness for those around us as a way to pay tribute to those who’ve been lost to us. One act I’m going to do is to write thank you notes  and deliver them to the Newtown Superintendent, asking her to deliver them to the school staff. Here’s what I want to say:

Thank you for your courage. Thank you for the love you give every day. Thank you for giving the gift of yourself no matter how hard it is sometimes. The people in your world are richer because you are here. You make a difference. You matter.

I read this to myself over and over, wanting it to be concise yet wanting it to speak volumes. Then something occurred to me. This is the same note I want to send to a few of my friends who struggle with depression. With the dark and cold months ahead, I worry that they’ll forget how important they are to their kids, to their grandkids, to me. This is the same note I want to give to my husband to make up for all the times I get too busy to make the time to show him how much I love him. This is the note I want to give myself because I’m trying to be a good friend to me. This is the note I want to give to my son and to my daughter. No matter how often I tell them, they can’t truly comprehend how rich they have made my life, how much they inspire and teach me, how deeply I love them. I want to indelibly write this into their brains so they never, ever doubt just how much they matter. This is the note I want to send to every child who feels disconnected, who feels that no matter how hard he or she tries, (s)he is just too different to ever fit in, to ever be understood.

You matter.

I care.

And so I send you a note today, as a caregiver of children who really, really need you:

Thank you for your courage. Thank you for the love you give every day. Thank you for giving the gift of yourself no matter how hard it is sometimes. The people in your world are richer because you are here. You make a difference. You matter.

 

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Dec 12

Holy MTHFR!

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surprise1If I say MTHFR, then Methylenetetrahydrofolate Reductase are the two words that pop into your brain, right? No? Well, hopefully after reading this, you’ll see more than that swear word that caught your attention.

If I next mention bipolar struggles, rapid mood swings, depression, anxiety, heart disease, strokes, macular degeneration, miscarriages – and any of these issues hit home for you, then read on, because you might just want to know about MethyleneTetraHydroFolate Reductase – better known by its abbreviation – MTHFR.

MTHFR is a gene and like all genes, it acts as a light switch – turning on or turning off various body processes. In this case, MTHFR takes folate (vitamin B9) and methylates (converts) it into methylfolate (5-methylTHF). Hardly seems like a big deal, does it? Yet, if you belong to an autism, Pandas, Lyme or chronic fatigue group, you’ve probably noticed a big buzz around this thing called methylation. While the past decade has seen MTHFR studied in terms of cardiovascular disease and cancer, it turns out it might also be a very big deal for those raising kids with developmental, neurological or behavioral symptoms and for those fighting chronic infections.

Methylwhat?

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Nov 30

On Being Judged

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Throughout the year, there are obligatory events that make parents of an “easy to love but hard to raise” child cringe – birthday parties, vacations, trips to see relatives, the start of the school year and the double-whammy of Thanksgiving and the gift-frenzies of December. These are the events we dread because they come with a generous helping of judgment. Every year, you see magazine articles and blogs helpfully entitled “How to Start the School Year Off Right” or “How to Survive the Holidays with Family.”  You roll your eyes, knowing there’s no hope for you and your offspring. But you read them anyway. Maybe you’ll glean a smidgeon of insight or at least be reminded that you’re not alone in your dread of gatherings.

The general theme of these essays is that 1. Your child is bound to draw unwelcomed judgment upon him/herself and (guilt by association) you and 2. You can do damage control. I now totally disagree – at least on Point #2.

Recently, my extended family gathered to mark an event (pick any event – they all have the same story). Inevitably, someone made a casual comment about a relative who wasn’t there. That was followed up with a story about the last family event this relative attended where words/actions bypassed someone’s brain filter and led to hurt feelings. Before long, the whole extended family was on Freud’s couch, being analyzed, poked, prodded – and judged. Not all judgments were harsh. There were some nods to noble qualities and thanks for support given in a needy moment. But unkind sentiments weren’t exactly on the endangered list. My overall reaction was to clam up, to move away from a conversation that could become toxic. I’d like to imply this was because I’m above all that, that I don’t have a catty bone in my body. But you’d probably know better.

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Aug 10

To Med or Not To Med?

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Recently, I witnesed a debate about medicating kids with invisible disabilities. Predictably, sadly, it got a little heated on both sides. Now, I have strong opinions on this as it relates to my own kids but let me state upfront that I do not feel that my opinions should be held by anyone but me. I’ve lived through moments where it took every ounce of self control, every molecule of patience, just to get to the next moment in time without losing my mind. I’ve had days where I’ve wished with all my heart for a pill that would make it all go away. I’ve also had days where I’m grateful that no such pill existed because walking a different path brought unexpected gifts.

Sometimes the decision to use a medication – for any illness – is a slam dunk. Other times, it comes only after an agonizing internal conflict. Sometimes it doesn’t come at all and you choose to slug through med-free. I think the reason many parents decide to give a child a pill – by prescription or an over the counter supplement – is because that particular medication just might give the body and brain something that’s missing. It’s a decision driven by the desire to give your child – and your entire family – a better quality of life; to provide freedom from hell on earth. It is not “taking the easy way out,” using “mother’s little helper” to shirk the hard work of parenting. It is choosing, each in our own way, to be a responsible, nurturing parent who’s trying everything possible to do the right thing. But there is no “right” thing in a way that’s “right” for everyone. Or even “right” forever. There is only “right” for right now.

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Jul 24

A Glimpse of Normal

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When you raise a child with “challenges,” you can spend a lot of time measuring your life against a “normal” ruler – some imagined gauge to see just how abnormal your life is compared to other families. Some days, you look around and decide you’re not doing so bad. Other days, you feel like your family life is so off-the-charts insane that you may never find your way back.

Having kids with PANS (pediatric acute-onset neuropsychiatric syndrome) means our normal-o-meter goes up and down based on health. When illness blows through the house, Normal becomes a place on the other side of the globe.

It’s a rare event to have both kids healthy at the same time.  But bucking tradition, both started this summer in a good place. After years of medical battles, I felt like I was finally getting a date with Normal. This is the story of how the date went.

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Jun 15

Gripped by Fear

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I had the strangest experience the other day. I became totally overwhelmed with anxiety. Not your run of the mill worries. Not an “Oh man, this sucks, I wish I didn’t have to face this” kind of worry. I’m talking about an “OMG, the world is closing in around me, I can’t breathe or scream for help and no one seems to be noticing” kind of worry.

It didn’t matter that what I was worried about was being hugely exaggerated in my head. That if my fears ever did come true, it would be eons in the future. It didn’t matter that I knew many things would change in the coming years that could make all this wasted energy irrelevant. It didn’t help when I reminded myself that there were many people and backup plans to support me if my fears did happen to come true. I was gripped by unrelenting, dark, suffocating, paralyzing fear. I felt like I was being buried alive, watching the light disappear as dirt fell around me, squeezing away the air pockets that would keep me alive. I was utterly alone, isolated, terrified. It took enormous energy to get through each moment, feeling like the activities swirling around me – kids playing, dog barking, neighbors mowing the lawn – were actions in a movie. I was only watching. I wasn’t part of the life going on around me. I was instead held hostage inside my own head. A tightness gripped my chest, so tight that when I tried to take a deep breath, it only confirmed that I was suffocating, because no matter how much air I tried to suck in, no matter which relaxation trick I tried, it only left me feeling more deprived of air, more desperate, now even further from the calm I so urgently craved.

When my husband came home that night, I told him what I was feeling. He showed concern but there wasn’t much he could do. It was all in my head and I was the only one who could fix this. That experience – of trying to reach out for help, for connection – only made me feel worse, because it reinforced just how alone I was. I was the only one who could change this and since I felt powerless to conquer this overwhelming fear, I was truly, totally, completely screwed. Impotent. Doomed. Continue reading →

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May 24

Doing What Doesn’t Come Naturally

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Perhaps one of the greatest gifts you can give someone is to help him feel understood. As a parent, it’s the biggest goal I have when it comes to my interactions with our school – to help my kids be understood by their teachers. Of course they’ll have issues, conflicts, misunderstandings, maybe some tears. They have those things at home, despite living with their perfectly understanding and unflappable parents (ha!). So there’s no way to think they won’t encounter bumps everywhere else too.  But if those issues can be framed in the context of their unique challenges, if the “why” of their behaviors are at least considered when consequences are meted out or proactive plans are hatched, I’m a happy camper.

Unfortunately, like so many parents, I find goals and realities don’t always walk hand in hand. Awhile back, I wrote about the disappointment of some teacher conferences I’ve had (http://www.easytolovebut.com/?cat=361) and how I wished all teachers had to attend a course that helped them understand what it felt like to have ADHD, OCD, anxiety, sensory issues, Tourette’s, bi-polar or any of a dozen other challenges. The feedback from parents was overwhelmingly positive. But privately, I received emails from friends who are professionals in school systems. Their enthusiasm was far more muted. Even though they themselves struggle with anxiety or their own kids have 504s or they work with students with special needs, they let me know that while sometimes teachers don’t “get it,” sometimes parents don’t “get it” either. Continue reading →

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Apr 04

Someone Has Some Explaining To Do

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Another parent-teacher conference has come and gone and this year, I find myself a changed woman. You see, in years past, I have always seen conference time as an opportunity to advocate for my children. It’s been my time to check in to make sure their teachers understand what makes them tick. I’ve enthusiastically shared tips for reading the body language of anxiety, patiently tried to explain how OCD can look like ADD, and pleaded for an email at the first sign of any behavior changes (which for my kids can mean a PANDAS relapse is on the horizon). Over four years, my audience has sometimes indulged me and sometimes even been genuinely interested in learning and sharing. Sometimes, I’ve been met by that polite yet pained smile that tells me I’ve just been labeled “the neurotic mom who clearly needs a valium.”

 This year, spring conference found me jaded. Whether it’s me who’s changed or just an unfortunate failure to connect, I haven’t been able to click with my kids’ teachers. Instead of wanting to use my fifteen minutes to foster understanding, I just followed the typical script, heard how my kids were making progress and made a timely exit.

Where did that naïve, driven, committed mother go? Could my passion for wanting to change hearts and minds really dry up in only four short years? Or am I just past the point of having the energy to re-explain everything year after year? When I first learned about OCD, I was eager to share what I knew. Now, after so many failures to reach my audience, when I hear “Gee, he doesn’t seem to wash his hands any more than the other kids. I really don’t see any OCD,” I should realize that this isn’t said to be hurtful. It’s a sign that OCD remains poorly understood and that teachers aren’t being given the training that could help. But in that moment, after being on the receiving end of so many similar comments, I just want to stand on top of the desk and shout “You ninny – not everyone with OCD washes their hands!” How I wish I could find a way to explain that long goodbyes in the school lobby do not make me a helicopter mom but instead allow my child to slowly disengage at her own pace; give her the power to start the day with a small sense of control instead of having the noise and chaos of a bus trip overwhelm her before she’s even set foot in the building. I guess I’m not losing my passion so much as I’m getting discouraged. Continue reading →

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Mar 02

Leave Nothing To Chance

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The other day, I sent an email to the parents of my seven year old’s BFF, Anna, arranging a play date for our girls. We traded emails and finally settled on a date and time. But at the end of the reply came this “Thank you for thinking of us at this time. I’m trying hard to be both parents and keep her life the same as usual. So it’s very nice of you to set up the play date… it will help her keep her mind busy.”

Trying to be both parents? Keep her mind busy? What?!

I’m not close to Anna’s parents. We’ve chatted a few times at the start of a birthday party or a pick up from a play date. But I’m certainly not privy to intimate details. So I’m scratching my head. Did the parents split up? They both came to my house a few weeks ago to pick up Anna after a visit. They seemed comfortable and friendly with each other. Not that you can’t put on a good face, but it sure didn’t seem like there was any strain between them.

So I take the plunge into the cold deep end, asking what could be an over the line question. I reply, “Umm…please tell me if I’m being too personal, but did something happen? Do you need some emotional support?” As I hit the send button, I wonder if I’m going to offend, or worse, if I have just stepped into a pile of personal poo that I do not want to be in the middle of. And then I wait. And I hear nothing. Until the next day, when I learn that Anna’s dad has died – very suddenly, very unexpectedly. He was 49. Continue reading →

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Feb 16

The Burden of Silence

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I never really knew my grandmother. When she died, I was fourteen; she was 81. But since she’d suffered a stroke before I was born, I remember a woman confined to a wheelchair, partially paralyzed; a woman who slurred her words and needed help eating. I knew of Elsie, but I never knew who she was inside or what made her tick.

Elsie was 32 at the start of the Depression, raising five kids in a 3 bedroom railroad flat, when her son Arthur was born with mental retardation. If we think having a child with disabilities is tough now, well, it doesn’t even hold a candle to how hard it was in 1928. Three years later, child #7, Robert, was born with hydroencephalitis. My father says Elsie faithfully visited Robert in the hospital, but she probably never saw him babble and probably never saw him smile at her. He might have been blind and was probably inconsolable , no matter how hard Elise might have tried to make him feel better. He died sixteen days after his first birthday, having never left a hospital crib. Elsie was four months pregnant with her eighth child. Continue reading →

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