A Shameful Confession

Dear readers, I regularly engage in Gallows Humor as a coping mechanism, so if this tends to be offensive to you, you might want to move on and end this relationship before someone gets hurt. (In fact, Wikipedia just informed me Gallows Humor is part of my heritage, so I really can't help it). I probably will cry if you write a comment about your child's very real tumor or syndrome and how it's no joking matter. I deeply realize this. I apologize in advance.

I just got good news from my daughter's doctor...news that any sane person would celebrate. But I had a disturbing reaction. I was sorta/kinda disappointed. Just a little, teeny-tiny bit, I promise, but when I heard that her MRI results were "completely normal," my stomach actually lurched for a brief moment before the relief kicked in.

Some background: The reason for the MRI was to rule out any serious medical cause for her recent precocious breast development and equally disturbing increase in prolactin levels. She's 7, people! While a tumor on her pituitary gland was unlikely and the culprit was almost definitely Risperdal, I was all for an MRI because: 1) unlikely occurrences are my specialty; 2) "wait and see" has rarely worked out well for us before; and 3) something is definitely amiss in that girl's head!

So, while I'm glad to avoid yet another brain surgery in the family, I can't help but be a wee bit disappointed - and skeptical - that all is "completely normal" in that gorgeous head of hers. It's just not.

I know I'm not alone in my warped sense of reality. You see, I bumped into a friend yesterday, and traded autism war stories... filling each other in at our usual breakneck speed on schools, therapies, and anecdotes about whose kids were nuttier this week.

So I told her about the MRI and that I was anxiously awaiting THE phone call with the results. She said exactly the right thing to comfort me:

"You might have a tumor? No fair! Why can't we have a tumor!"

"Oh, not only that," I added. "We might even have a new SYNDROME!"

"What? What syndrome?"

I explained that my doctor thoughtfully posited this week that my daughter's behaviors sounded more and more like another of his patient's...who was recently diagnosed with Smith-Magenis Syndrome. Again, it's a long shot since genetic testing years ago probably would have caught it, but it was something to potentially explore.

Before I'd even finished my explanation, my friend was on Google.

Of course we don't want our children to have tumors and syndromes. But boy do we want explanations, answers and real treatment options with predictable outcomes. It should go without saying, but it might not, so please know that we love our children and accept them the way they are and will be. But as parents, we also want to give them any tools and resources within our reach that could help them develop, learn and grow to their own best potential.

In our jaded way of thinking, theoretically, a tumor - and correlating symptoms if you ask House - could be removed. Many narrower diagnoses come with a library of medical research, literature and clinical data. But this label autism? It's a spectrum, alright. A broad, broad spectrum. It's a big bucket of unknown! In fact, as we speak, the American Psychiatric Association is rewriting its criteria.

We have to wonder how ASD can describe so many children who present with so many different affects. We all know that "if you've met one child with autism, you've met one child with autism." As a parent seeking answers, that doesn't do much for me.

And what the hell is PDD-NOS anyway? (Okay, I notoriously have said it's a lame diagnosis given when a doctor doesn't want to break your heart with the A word. Sorry.) "High functioning," really? If you're a school, shame on you for using that lazy term on your website. It's autism, damn it. If you don't want my kid there, just tell me.

Sometimes, I am lucky enough to have people ask me, "Are you sure she has autism?" (Inexplicably, it makes me angry though...because any "non-autistic" behavior is due to years of  blood, sweat, tears and therapy - and her constant hard work.) I realize I really have no idea what she "has."

So when this friend and I consider our own children on the spectrum - often way, way on one side of  the spectrum - we do have a little "disability envy." We're kind of jealous of any medically sound explanation; ideally one that is verified by objective medical data like a chromosomal variation, medical lab test or even (not really) a tumor.

Recently, a father of a newly diagnosed "syndrome" child unknowingly validated our shameful feelings. He said that finally getting a diagnosis did not necessarily bring with it any major revisions to his kid's treatment, but it brought explanations and reassurance. It helped guide realistic expectations of their child's capabilities and challenges. He said it made him more patient, understanding and confident in their actions, and even helped their child feel more comfortable with themselves.

It gave him a road map. So, we won't always like the destination (and I am a firm believer in relocating if necessary - screw you, Holland), but I can't help it: I would really, really love a road map.

It Could Always Be Worse

When you think things are bad, when you feel sour and blue,when you start to get mad…you should do what I do!

Just tell yourself, Duckie, you’re really quite lucky!
Some people are much more…
oh, ever so much more…
oh, muchly much-much more

unlucky than you!

 ---Dr. Seuss, Did I Ever Tell You How Lucky You Are?

As a follow-up to my recent "Why Me?" post, I must share this nugget from a favorite childhood book of mine. Of course, re-reading it to my son 20-odd years later in my own chaotic household would prove even more meaningful.

Based on a beloved Yiddish folktale, Margot Zemach's It Could Always Be Worse comes straight out of the "old country." It starts out with a very poor man lamenting about his oh-so-hard life, living in a crowded, one-room hut with a large, noisy family. He can't take it anymore, so he consults the village rabbi for advice on how to stop the insanity!

The esoteric rabbi has fabulous ideas. First, he advises him to bring all of his chickens into the house, as well. Oy Vey! The man is somewhat skeptical, but he complies. Turns out - don't be shocked - the chickens did not help matters at all. So, a few days later, the downtrodden man revisited his rabbi for more advice, only to be told by him - the wisest man in the village - that the family should also bring the goat inside to live with them. He sure does, and a few days later, the cycle is repeated and in comes the cow. 

Most households don't actually look like this,
but on many days, they might feel exactly like this.
We don't know what goes on behind closed doors! 

The man has come to the end of his rope, and begs the rabbi for help (mercy), once again. Finally, the sage spiritual leader advises the poor guy to release all of the animals back to their outdoor homes, leaving only the man and his human family in the small shack - right back where he started.

But guess what? That night, the grateful man slept more peacefully than ever. His home felt like the village mansion! Yes, boys and girls, he learned an oft-forgotten lesson:

It could always be worse.

Inevitably, some of you out there have it better than I, and some of you sadly not. However, no matter how full your plate or how heavy your heart, we have to remember to appreciate what we do have because it really could always be worse. 

If we don't believe that, I'm afraid, life has a way of proving it over and over again.

It’s a troublesome world. 

All the people who’re in it
are troubled with troubles almost every minute.
You ought to be thankful, a whole heaping lot,
for the places and people you’re lucky you’re not!

-- Dr. Seuss

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Why Me? Of Course Me.

"Why me?" is an almost universal question asked by many parents of children with special needs. These are two powerful words that can spur strong responses of spirituality, admiration, self-pity and sometimes hate. They can launch an introspective journey of self-improvement, or trigger a downward spiral into depression.

For better or worse, I have avoided those two words for many, many years. I tried not to ask "why me" when my first child was diagnosed with a medical disorder in utero, nor did I ask it when my second child was diagnosed with autism (seemingly overnight) when she was 15 months old.

In fact, quite the opposite. I never really expect things to go well. I feel like I'm often waiting breathlessly for something to go wrong. If all is well, THAT'S the time I ask, "why me?" and "why now?"

I do believe myself to be a genuinely good person. I like helping others when I can; I try not to hurt people; and I have never been convicted of a crime beyond a parking infraction. However, I often can be self-critical and will take things personally way more than I reveal. So, if I really wanted to ask myself, "why me?" I am sure I could come up with many, many, many reasons - most of them completely nuts.

However, I am too busy and too practical to head down this path. I am solutions-driven, and the "why me" exercise would be quite the opposite. Not only do I not have the time to dwell on that, I recognize the danger in it. It is seductive, yes, but somewhat self-indulgent, and I know I am weak. I sometimes joke that I would suffer from depression if I had the time. I am secretly envious of rock stars who get to check into hospitals to recover from "exhaustion." To me, that sounds like a luxury vacation!

But really, as the parent of a child (or children) with special needs, what's the point of asking "why me?" (Of course, I mean this in the spiritual sense. I absolutely encourage people to see geneticists, neurologists, endocrinologists and internists if there are actually medical answers to this question!). We have too much else to occupy our minds, bodies and hearts.

However, I heard something last week that has completely changed my perspective. I was at the funeral of a child. The first and hopefully last. It wasn't necessarily an "unexpected" death. She was diagnosed with a degenerative, genetic disease at age 2, and lived far beyond all expectations, to the age of 9. However, that certainly didn't diminish the gravity or tragedy of the moment. An older brother spoke, as well as both parents. Keep in mind that this child has been completely dependent on her family for years, unable to do anything - except love them - without assistance.

Here, I will paraphrase what her grieving father said in his eulogy, commenting publicly on the "Why us?" question we all dread.

"Why us? Of course us. Because who would love her more than us?"

Those simple words touched me deeply. Perhaps someone else could manage these kids of mine better than I. Perhaps you, on the outside, might look in and judge my actions...or whisper among yourselves while my daughter tantrums in the parking lot. But I assure you, I am the right parent for these kids. Because I know, with my heart and soul, no one would love them more than I.

Which leads me right back to...Why me...why should I be so lucky?