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The Surprising Way My Parenting Expectations Changed for My Child With Special Needs

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Lanna and her kids
Lanna and her children.

Narcolepsy is a hideous disorder that can turn your world upside-down. It can forever change your loved ones, alter family dynamics and create a new normal that is anything but “normal.” At first, I was overwhelmed with grief. I kept imagining a detective dra%%pkMDojxMXv%%arcolepsy, played by a miscreant short man with an inferiority complex and a thick German accent, had kidnapped my Dylan. I envisioned a mysterious, hyper-intelligent Ryan Gosling-type suddenly solving the mystery in a moment of clarity and heroically returning a healthy D back to me. Sadly, these were all just hypnogogic hallucinations. Eventually I had to come to terms with Dylan’s new reality.

When Dylan changed, life changed. We had to adapt to a new way of living. I’m not declaring that life as we knew it was over, because it wasn’t. It had just become harder and far more unpredictable. Defining the new “normal” was the toughest part. For me, there is comfort in consistency. Having expectations fulfilled, even negative ones, gives me some semblance of control in an otherwise uncontrollable world. Dylan’s predictable morning medicine struggles, while frustrating, give me an odd sense of solace.

So what’s our “new normal”? This is a question I’m asked frequently. Certainly there have been changes to our daily routines. For instance, since the stimulants suppress Dylan’s appetite, he doesn’t eat for most of the day. As a result, he wakes up early in the morning, we’re talking 4:45 a.m. early, famished and parched. Breakfast is now served on demand. Logistical considerations are also required. Dylan needs a bed to sleep on in class. We must always sit in a booth at a restaurant. And now, we bring a blanket with us pretty much everywhere we go. All things considered though, these are fairly minor and easy to implement changes. The most challenging change was re-calibrating our expectations.

Parents have all sorts of expectations for their children — sometimes, even before they’re born. In my opinion, there are three distinct types of expectations parents have for their children:

1. Grand expectations, which are sometimes confused for delusions of grandeur. These would include things like expecting your son to one day be a famous NHL player or expecting your daughter to be the next prime minister. Grand expectations are the pipe dream fantasies we secretly have for our children.

2. Realistic expectations are distinct from grand expectations, in that they are often more reasonable, achievable and usually involve typical milestones that kids progress through. This category of expectations would include things such as expecting your children to drive, expecting them to date, and expecting them to attend university. Realistic expectations are often ones you share with your children and help them prepare for. A classic example of a realistic expectation is one that many Jewish parents share and most Jewish kids know too well — that they will grow up to be a doctor, lawyer or dentist. I expect both my children will be lawyers because of their deep appreciation for the art of arguing.

3. Mundane expectations are ones you probably don’t even realize you have. They’re not “sexy” expectations like grand expectations and they’re not rites of passage like realistic expectations. Mundane expectations are usually taken for granted. Most parents expect their children will eat three meals a day, watch movies, attend birthday parties and run around with the other kids at recesses. We don’t give these expectations much thought because we just assume they will occur. These expectations are so ordinary, that even when they are fulfilled, they can go unnoticed.

It is the mundane expectations that have changed for us since Dylan’s diagnosis. I still have wildly silly grand expectations for Dylan, like winning the Nobel Peace Prize for curing %%vBs88x8CDm%%, or marrying an heir to a fortune. And I still have many realistic expectations for Dylan, like learning how to play guitar, going to overnight camp, and fully expecting him to one day fail an assignment he decides to write from the perspective of a Colombian drug lord for no reason other than to entertain himself. I expect these will all happen (particularly the last one if history repeats itself from one generation to the next).

But the mundane expectations are the ones that have drastically altered. Things we never thought about before are now front and center. We no longer expect Dylan to eat three meals per day — one or two meals, if we’re lucky, will have to suffice. We no longer expect him to sit through a movie without needing a nap so now we take two cars to the movie theater (or better yet we watch movies at the Newman theater where he can fully recline should he need to snooze). Our expectations have certainly changed with respect to birthday parties, both his and his friends’. An RSVP from Dylan is about as reliable as a Range Rover. Even Dylan’s own birthday party is a gamble. This past June for his fourth birthday, he slept or screamed through the entirety of his party and eventually ended up leaving early after begging to go home.

Running around with his friends comes with another new expectation. My delicious little man loves running so much that he often has a cataplexy attack from laughing so boisterously. As a result, instead of expecting him to pee in his pants a little like the rest of us do when we laugh or run, we’re now on guard for a potential collapse.

There are many other expectations I consciously think about that I might never have otherwise. Will Dylan drive? Will he play sports? Will he suffer from depression? Will he be able to watch “The Lord of the Rings” without falling asleep (an impossibility for my dad and I)?

I’ve learned expecting the worst and hoping for the best can sometimes be pleasantly surprising.

This past summer, Dylan went to his friend’s birthday party at an indoor playground. Just going to the party was pretty unexpected. Not only did he make it, he ran and jumped and laughed and played without incident and left the party a sweaty mess. Last week Dylan ran the Terry Fox run at school. I never would have guessed he would have had the energy, but he exceeded all expectations by running the whole (kindergarten) route. And probably most unexpected of all, was his dental appointment this past week. Dylan had to have a cavity filled, but unlike all of his previous experiences with the dentist, he was polite, agreeable, talkative and exceedingly well-behaved. My little anti-dentite did not cry and never once whined. This was completely unpredictable and truth be told, a little unsettling to my change-averse sensibilities. What happened to my “wailing and flailing” boy? It was so odd and unexpected.

In many ways, this experience has changed me, dare I say, for the better. As cliché as it may sound, Dylan’s illness helped put things into perspective. I no longer find nearly as much happiness in materialistic things. Instead, I find my joy in Dylan’s everyday accomplishments. Small wins become World Series championships. Little victories that might otherwise go unnoticed are now celebrated. Something as simple as seeing a sweaty Dylan after an active birthday party is pure bliss. While sweating is a mere mundane expectation for most, Dylan is often too tired to be active enough to ever break a sweat. My son’s perspiration is my new Louis Vuitton purse. Listening to Dylan say “hello” to a house guest and then willingly engage in pleasant conversation is my new North 44 dinner. Watching Dylan put himself to bed instead of throwing a fit is my new Las Vegas vacation.

Life has changed, and so have I.

Follow this journey onFollow this journey on Wake Up Dylan

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Originally published: June 1, 2016
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