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duel

“He’s got some, some, some, souped-up diesel.” Words that nightmares are made of. My sister and I grew up watching a horrible movie called “Duel”.  I always assumed it was called “Duel Game” and would’ve NEVER attributed such a terrible movie to Steven Spielberg, but alas–it was Spielberg’s directorial debut.  Maybe I would’ve liked this movie, had I not been forced to suffer through it as a tween.  And I wasn’t your “normal” tween–my favorite day of the week was Wednesday because that was “Law & Order” night.  So clearly, I didn’t watch age-appropriate shows.  But the movie “Duel” wasn’t just age-inappropriate; it was a “John movie”.  “John movies” are movies that my stepfather (John) watched.  Pretty self-explanatory. Included in this category are “Full Metal Jacket”, “Deliverance”, “Lawrence of Arabia”, and any movie and/or documentary about World War II. Surprisingly, even now I DO find World War II documentaries interesting, but if “Duel” is on TV . . . I recoil in horror. Not really, but I’d sooner watch a “Behind the Music” episode featuring One Direction. No doubt, you’d like to know more about “Duel”. Thankfully, I can sum up the movie in three words. Okay, maybe two words, a letter, and a punctuation mark. “Man v. Truck”. Yep. The ENTIRE movie is about a man being pursued by a tanker truck. Maybe “Duel” is the type of movie that hippies watch in underground coffee houses and then discuss how the plot is a representation of society and its barriers and “social norms” and “freedom of expression” and “Big Brother” and whatever other terms hippies use (Do they still “fight The Man”?). Whatever the case, “Duel” is excrutiatingly boring, and someday I hope to use the viewing of it as a form of punishment when Jack does something REEEEEALLY bad. Spoiler Alert: Man wins. And the truck drives off a cliff.

Maybe Man wins in a Spielberg-directed duel, but nobody wins in the painful dual in which I am involved. It’s not a battle I signed up for. This “dual” randomly chooses YOU, and your options are to 1) play the game, or 2) admit yourself to the nearest Psych unit (Sometimes both options may be warranted.).  And it’s impossible to win this dual; the best you can hope for is an acknowledgment that you participated. This “dual” that so overwhelms me is known in the Down syndrome community as “Dual Diagnosis”; more specifically, a child who has a diagnosis of both Down syndrome AND autism. Now let’s be honest here–EITHER diagnosis is overwhelming. Having a child with both? I’m not sure there is a word to describe it.  And if there is one, I’m sure it’s a word that’s flagged by Homeland Security, so it’s probably best to refrain from using it (I’ve already had enough trouble with government agencies lately, thank you very much.).  But the bottom line is, it’s a diagnosis that you wouldn’t wish upon any child.

It seems like most things in my life meet the criteria of “Baptism By Fire”; basically, when the worst-case scenario happens to you the first time you try something. Like, if you’re a divorce lawyer (or wedding planner) and your first client has the last name “Kardashian”.  The first time I remember hearing that expression was back in 1998. I had just been hired as a float medical secretary at Lahey Clinic. Being a “float” meant that I filled in wherever a medical secretary was needed in the hospital. If a secretary was out sick in Neurology, I may be asked to fill in for the day. If a secretary in General Internal Medicine was taking vacation for a week, I may be asked to fill in for the week. Rarely did you know where in the hospital you were going to be the next day. Most float secretaries tended to be in their 50’s so they weren’t anxious about being assigned to the busier departments. I, on the other hand, was 19 years old, so the busier the better! Or so I thought. On my very first day, without an ounce of training, I was assigned to the busiest department in the entire hospital–the dreaded General Internal Medicine. And one of the doctors I would be working for was SO difficult that she was literally asked to leave Lahey after a few years. She was nothing short of a nightmare–horrible to her patients, horrible to her staff, never returned phone calls, never gave patients their test results. She was a lawsuit waiting to happen. I’m sure she took one look at me and thought “Oh great, I’ve got a bimbo for a secretary today. Somebody send this tart back to the mall where she belongs.” (On a positive note, the woman training me on my first day back in 1998–Jen–is still a friend of mine to this day!) I remember being absolutely terrified to answer the phone. And believe me, it . . . never . . . stopped . . . ringing. Instead of asking: “How can I help you?”, I remember asking an elderly woman: “What’s your problem?” I did so politely, but I truly did not have the skills for this job. But with an immense amount of help from Jen, I made it through my first day as a medical secretary. The other secretaries were so encouraging and told me that being in GIM on your first day was definitely “baptism by fire”! Although it was an exhausting day, I felt invincible!

I experienced those same range of emotions when I was pregnant with Jack. Nearly every moment of my pregnancy was miserable. Dreadful morning sickness during my first trimester. Aversions to strawberries, tomatoes, peanut butter, amongst other things. Then during my second trimester–phrases like “Level 2 Ultrasound”, “thickened nuchal fold”, “possible Trisomy 18”, “possible Trisomy 21”, “amniocentesis”, “we insert a long needle into your abdomen”, and finally the heartbreaking “The results were positive for Trisomy 21.”–in other words, ‘Your son has Down syndrome’. I remember that phone call SO clearly. A Friday afternoon around 3:00 pm. Trying to guage the tone of the doctor’s voice before he gave me the results. Hoping beyond hope that he had good news for us. But he didn’t. Fast-forward to my 3rd trimester and I was in AGONY. Emotionally, Dave and I had come to terms with the diagnosis fairly quickly. But physically, I was pretty much in constant pain. The swelling in my feet prevented me from wearing shoes other than flip flops. Carpal tunnel in my wrists made writing painful. Sitting was one hair shy of excrutiating, due to an intense pain under the right side of my rib cage that my mother also experienced in all three of her pregnancies. Standing in place would cause me to feel faint and short of breath, so I had to sit on a stool in the shower and while doing dishes. And then the coup de grace–labor that started on a Monday and lasted until Thursday. Asking–no, PLEADING–for an epidural and not getting one until I was fully dilated (Believe me, I know what you’re thinking–that’s not even possible. They would never give an epidural to a woman who was fully dilated. Well guess what? They did. Because I’d been asking for it since I was 5 cm and apparently my doctor was nowhere to be found. A “natural birth” was NEVER part of my plan so I don’t know what the problem was.). Then, Jack Henry McGann made his entrance into this world and I quickly eyed my “escape route options”. Could I fit out that window? I mean, how much thinner am I at this point? How could I undo the IV and leap out the window without them catching me? Basically, the sight of my newborn son didn’t make me feel overwhelmed with love. Instead, I was overcome by absolute terror. Terror that quickly abated once I had some crackers and ginger ale in me. I was SO relieved to learn that I absolutely DID love my baby; I just happened to have extremely low blood sugar that was essentially making me delusional. So let me tell you–my pregnancy would ABSOLUTELY meet the criteria of “Baptism by Fire”!

Unfortunately, every aspect of raising Jack–from fetus to 6 year-old–also falls into the category of “Baptism by Fire”.  The food allergies, the rashes, the colitis, the hospitalizations, the sinus infections, the prescriptions, doctors, specialists, and specialized clinics, fighting with MassHealth.  NEVER-ENDING PAPERWORK.  And despite ALL of this, seeing very little progress. NEVER did I blame his lack of progress on his teachers or his therapists. This was “just Jack”. In hindsight, we should’ve realized that there was a REASON for his lack of progress. I had no problems telling people that Jack was, mentally, about 18 months old. But I’d been saying this for years.  I just never bothered to ask myself “WHY?”.  “Why” has Jack been stuck at the mental age of 18 months for about 4 years now?  But when you’re in the eye of the hurricane, your main concern is “survival”.  You’re not planning your child’s high school education; you’re not thinking about middle school, you’re not thinking about elementary school.  Need I go on?  You’re just thinking about getting through the day.  Did Jack get his doses of antibiotics?  Did he get his thyroid medication?  Did he get a sinus rinse?  Does he have clean clothes?  Do we need more diapers?  What packet of paperwork do I have to fill out this week?  What doctor’s appointment does he have this week?  Pretty much ANYTHING beyond those “basics” is too much for me to handle.  Making dinner?  Hilarious!  Cleaning the house?  Why bother. Changing into clean clothes?  Hmmmmm, where did I put my pink sweatpants? Brushing my teeth?  Did I do that today . . . ?  Sound familiar?  Yep . . . when you have a newborn!   And that’s essentially what we have.  You may think I’m exaggerating, but if you’ve been to my house you can see for yourself that I’m completely serious.  In fact yes, I am wearing the pink sweatpants right now and no, I have not brushed my teeth yet today (It’s 9:15 pm).

I know what autism looks like.  At least I thought I did.  I guess I knew what the extremes of autism look like.  There’s my brother, Jake, who has Asperger’s–a mild form of autism–and then on the other end of the spectrum there are the kids who rock back and forth in the corner of the room, screaming, biting, and hitting.  Jack is neither of those extremes.  So how could he have autism?  I would reason to myself that maybe he’s just a low-functioning child with Down syndrome.  But he’s not low-functioning!  He’s actually a very smart kid!  I’m not in denial–I know he’s never going to be studying Calculus.  He’s not going to become a Nuclear Physicist.  But he’s a lot smarter than most people know.  Since he’s essentially non-verbal, it’s easy to assume that he can’t speak, that he has no desire to speak, and that he can’t understand you.  None of those things are true.

Jack was seen by the Down Syndrome Clinic at Children’s Hospital in June 2011.  At that time, it was recommended that he see the Behavioral Specialist at Children’s.  I was told that the appointments were difficult to get and that there was quite a waiting list to be seen, but that the Ds Clinic would put the request in and I should wait for their coordinator to call me.  Fast-forward to March 2012.  Still no call about a Behavioral appointment.  So I contacted them to see how much longer they expected the wait to be.  “Well there’s only 1 other child ahead of him on the waiting list so I’d say by the end of April.”  Wow, great.  Only a month to go.  April comes and goes.  So does May, June, July . . . Lo and behold, we’re given an appointment for OCTOBER.  Well over a year from the initial appointment request.  The doctor who saw Jack was absolutely wonderful and wanted to do more testing on him to rule-out autism and ADD.  The first available test date?  JANUARY 2013.  Now try to wrap your heads around that, folks–the initial appointment request was put in June 2011 . . . and the testing date was January 2013.  Does that strike you as slightly problematic?!  When you have a child who is making hardly any progress in school, and who is climbing the walls at home?  And in the interim, Jack’s been diagnosed with Hashimoto’s thyroiditis and was given a daily medication to regulate his thyroid, he’s had two sinus surgeries (an adenoidectomy and FESS) that failed to reduce the number of sinus infections that he gets, he’s been on a high dose of antibiotics and a steroid nasal spray for over a year and a half straight, he’s ALWAYS sick.  (In fact, he’s sick right now.)  And now, we’re about to receive a diagnosis of Autism.  As much as a diagnosis of Autism HURTS, it also explains SO many things.  It makes sense of all those perplexing issues that “Oh, well he’s got Down syndrome” didn’t seem to sufficiently explain.  The sensory issues, the lack of progress in school, the behavioral issues.  Autism explains them all.  What I want people to understand, for our sake, is that Down syndrome and Autism are not the same thing, just as cake and ice cream are not the same thing.  Yes, cake and ice cream both contain some of the same ingredients–like eggs and dairy, the same way Down syndrome and Autism may also share some of the same “ingredients”, or components.  But despite the fact that some of the components are the same, they still remain two very separate and distinct diagnoses.   It’s important to me that people really get the sense of what a dual diagnosis entails so they can really appreciate what Dave and I go through.  Down syndrome comes with its own unique set of challenges.  Autism comes with its own unique set of challenges.  When you combine the two, you don’t get cake and ice cream.  You get something so overwhelming that it can be hard to breathe.  There are special clinics for children with Down syndrome, but there are also special clinics for children with Autism.  Jack is already being followed by the special clinics for children with Down syndrome.  But now I’ve got to book him appointments for the special clinics for children with Autism.  Overwhelming.  Disheartening.  Exhausting.

A few weeks ago, I thought that the only people who could truly understand what Dave and I go through on a daily basis were people who also have children with a dual diagnosis, but I’ve learned the hard way that there is NOTHING FARTHER from the truth.  People who are naturally empathetic are going to be empathetic to our situation.  People who are naturally judgmental are going to judge us as if we’re never doing enough (As if any parent ever feels that they’re doing enough.).  And people who take themselves too seriously are also going to take you too seriously.  I’m having a hard time letting go of that one because the wound is still so fresh and the repercussions were so immense.  I read a lot of classical literature in high school and I remember next to none of it.  But one line just popped into my mind and it really summed up how meaningless this investigation has been:

“it is a tale

Told by an idiot, full of sound and fury,

Signifying nothing.”

I’m completely using the line out of context, but it really sums up how I feel about this whole experience.  All of these complaints, so full of sound and fury, signified nothing.  I have to wonder just exactly how concerned about our situation any of these people truly were when none of them approached us personally.  Instead, we were completely blindsided on two separate occasions.  And due to all of the “concern” shown by these particular people, our situation has not changed in the least.  Except that our house is (temporarily) a lot cleaner because I wanted it to look perfect for our visit with DCFS.  Oh, and I cried a lot.  But beyond the IMMENSE amount of stress that goes along with a visit from DCFS, and the barrage of tears I shed out of confusion and frustration, in the end life is still very much the same.  Just a bit more jaded.  The human tendency is to gossip.  None of us have freeness of speech in this area, myself included.  But if a piece of gossip leads you to believe that someone you care about is in trouble, why not give them a call to see how they’re doing?  Why not offer to help, even if that means just providing a shoulder to cry on?  Do you know how painful it is when people treat you as nothing more than a piece of gossip?  It hurts.  It takes the wind out of you.  At a time when you need a pat on the back, to get a slap on the wrist will crush your spirit.  It will also make you distrustful and suspicious of people.  I once heard a speaker say that we have the opportunity to be the answer to someone’s prayers.  It’s disheartening to think that some people have chosen to be the cause of the prayers I’ve cried to Jehovah.  For all of my incredible friends who have been so generous with their praise and support–I am so appreciative.  Each of your messages meant SO much to me.  And to those of you who chose to do otherwise, I’ll leave you with this thought: At this very moment, it is 12:55 am.  Jack woke up about 20 minutes ago with a croupy cough and severe congestion.  I put him in the shower to let the steam loosen everything, then gave him a sinus rinse.  Yes, a sinus rinse.  After putting a dry diaper on him and a pair of pajamas, I gave him 2 tsp. of Sudafed and his steroid nasal spray.  He’s back in bed at the moment, but he is too sick to go to school tomorrow.  On Wednesday, he has his 2nd appointment with the Behavioral Specialist at Children’s in Boston to continue his autism assessment, and on Thursday he has an appointment at Mass General to see a new Gastroenterologist because he’s been spontaneously vomitting at school almost every day for the past few weeks, despite being on a daily medication for reflux.  If you are concerned about my coping skills or my stress level, by all means–call me up and offer to accompany me on one of Jack’s appointments.  Or stop by the house while Jack is home sick and watch him for a few hours so I can get some rest.  Then you’ll be able to see firsthand that although coping with my circumstances is not easy, I am coping.

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