We’ll Never Know.

About a month ago, Daniel started experiencing pains in his lower back, which felt like he was being stabbed repeatedly with a knife.  These pains became so severe that he could barely breathe, so we grabbed Samuel, jumped in a taxi (as there was no way that Daniel could drive himself) and sped to the ER.

They checked him out, did the normal blood work, gave him a CT scan, and found out that he had a kidney stone.

This didn’t seem too bad (except for the imminent, “child-labor-like” pains that everyone describes when passing a kidney stone), and they promised they would give him two days off and some hard-core pain medication.

After the doctor delivered the news and left the room, I was trying to cheer Daniel up, saying things like, “We can handle this,” and “This is very doable,” and… “at least it’s not permanent.”

The “Not Permanent” words still hung in the air as the doctor walked back in – this time looking much more serious and somber than before.

He said, “I have something else to tell you. Your blood sugar level is 300, and that is extremely high; dangerously high.  –Do you have diabetes?”

Daniel and I both scoffed (simultaneously, I think...) and looked at each other in disbelief.

“NO, of course I don’t,” Daniel said.

“Do you have any history of diabetes in your family?”

“No – No one.”

“Well, you need to see an Endocrinologist immediately, and I’ve already made an appointment for you later today,” the doctor replied.

Immediately, I’m on my phone Googling “Blood sugar 300” and yep, everything I see comes up in the Red / Danger zone / Type 2 Diabetes, etc.

But we were both in absolute disbelief.  Daniel is ONLY 43.  And self admittedly, was maybe 10-15 pounds overweight, but he eats REALLY well most of the time (or so we thought, more on that later).

The doctor didn’t stop there though..  He dropped another bomb.  “And, I’m sorry to be the one telling you this, but your blood pressure is also extremely high.  145/92.”

Again, I go to Google: 145/92 is in the orange/red range; Hypertension, Stage 2.

Stunned, we just sit there, while the guilty-looking ER doctor is repeatedly apologizing for having to be the one to tell us this news.

So we headed home and looked up everything having to do with the word “Diabetes,” and made some important discoveries.

First off, he wasn’t sleeping well.  He was getting an average of, at best, 5 hours of sleep a night – mostly, we thought, due to the stress of his upcoming trip to New York with 22 students.  Lack of sleep can lead to, well, practically every health problem you can think of – diabetes included.

Second, diet.  Turns out his diet wasn’t as great as we thought, especially when it came to sugar.  Two large tablespoons of sugar in each cup of coffee (x 3 cups of coffee a day).  And even though he had been consuming “fruit/spinach smoothies” on a daily basis, we realized that even though we thought these smoothies were healthy, they actually had an enormous amount of sugar in them (i.e. the natural sugar found in oranges and pineapples) + sugar found in strawberry yogurt that we would add in for taste & texture.

So, another significant contributor to diabetes.

AND, third, and probably the biggest one of all: STRESS.  The same stress that was causing him not to sleep.  The doctor told him that stress was probably the single biggest contributor to his diabetes.

Yes, he had the NY trip coming up, but from the blood tests that were done, this had been going on awhile.  Your blood sugar & blood pressure don’t usually just shoot up that high for a few weeks when things get crazy, and then fall right back down when things get back to normal.  The blood test he took gave him an “average” blood sugar score spanning a two month period – and it was still extremely high – meaning we couldn’t dismiss this as a temporary thing.

So we could change the diet, no problem.  But simply “eliminating stress” is a different animal.

Together with our online counselor, we started unpacking our lives and trying to figure out what might be causing him so much stress.

And one of the things we asked ourselves was,

“What kind of stress is caused by being the parents of three children with special needs?”

And it is an impossible question to answer.

We’ll never know.

With every one of our children having Autism, we will never know (unless we adopt in the future) what it is like to raise a neurotypical child.

Autism affects e-v-e-r-y-t-h-i-n-g; every single solitary aspect of our lives:

  • Where we live
    • must have inclusive schools with Special Education services
  • What we eat and where we eat
    • food sensory issues and peanut allergies which are often related to Autism
      • must avoid restaurants like Texas Roadhouse and Five Guys
  • Where we travel
    • must always be on the lookout for heavy use of peanuts in local cuisine
    • must have access to familiar, foreign foods or else our kids will go on hunger strikes
    • must worry about anything/anywhere that will be too loud or overstimulating 
  • Money and Retirement decisions
    • Special education fees x 3 kids aren’t cheap…
    • Will our children be able to buy their own homes in the future – and/or live on their own in the future? 
    • Will we have to spend our entire retirement savings to support them?

And while Autism affects everything, we don’t know how MUCH or to what extent it basically rules our lives (consciously or subconsciously).

  • How much does it affect us to see Gabriel sitting by himself during every single break because he can’t muster up the courage to engage anyone around him in conversation – no matter what kind of social interventions you’ve tried?
  • Or, to see Noah walking around by himself every day at lunch, shaking a leaf and talking to himself – while other kids politely ignore him?
  • Or, to see Samuel try to talk to his classmates (who appear to love him dearly) but, who you are afraid will ultimately lose interest and shun him in the future because he will not be able to keep up with them during conversations?
  • Or, to see Gabriel growing taller than you and know that in about five years, we will have to have a Plan B, C, and D for his future because university will not yet (if ever) be an option?
    • Then the same for Noah, and Samuel…

We don’t know how all of this affects us.  Either of us.  And we often wonder if being special needs parents has actually changed us.

  • Are we the same people we would be if we had neurotypical children?

I think it must have changed us, because when I think about a life without Autism, it’s a life I don’t recognize.  It almost strikes me as a life that would be, for a lack of a better term, “too easy.”

**And I hope no one takes offense to that statement; I am well aware life is difficult, even without Autism.  But if we had that cloud of Autism lifted from our family, I just can’t imagine how blue the sky would look.

What would it be like to not have to worry about everything listed above?  Plus the countless other things about Autism that I didn’t list?

We also wonder if being Autistic parents actually affects how we project ourselves towards others.

For instance, we both sometimes worry that we come across as conceded, or stuck up, to others, especially since we mostly tend to keep to ourselves and don’t join in a lot of social events.

And WHY are we like this?

For me personally, this is coming from someone who was an over-the-top, crazy, in-your-face, couldn’t-get-enough-of-people, attention-seeking Cheerleader EXtrovert when I was growing up.

Daniel was also quite social, but from what we can compare, not near the socializer that I was.

But now, sometimes, I don’t leave the house at all on weekends.

I’ll go for weeks without inviting anyone over, or being invited to anything – or attending any kind of social gathering.  (And I’m not trying to feel sorry for myself, mind you – I realize this is 100% self-imposed).

So what has changed?

In our 18+years together, I believe Daniel and I have been very blessed, in so many ways: we’ve both been able to remain in relatively good health, no major accidents or tragedies (knock on wood!), nothing to seriously traumatize us – except this.  Except Autism.

It must be the Autism.  Right?

Do we knowingly (or unknowingly) exclude ourselves and our family in general from others, because it just makes life easier, or less stressful?

Because then we don’t have to worry about our kids stimming in front of others (and the kind, embarrassed parent smiles and polite ignoring that goes along with it), or we don’t have to worry about our kids asking others nonsense questions, or being mortified when our 14-year-old son walks around in boxers in front of house guests after being told 100+ times that this is inappropriate?

Have all the thousands of little Autism aspects taken their toll on us?

Well, we’ll never know. 

*big sigh*

But I will say this.

In spite of everything, we love our beautiful boys (Autism and all) with every fiber of our being, and I think we are resilient.

For instance, Daniel has bounced back brilliantly and lost an incredible 18 pounds in one month.

His blood sugar levels?  Normal. 🙂  And that’s with ZERO medication.

His blood pressure levels?  Lower, but still working on it.

His diet?  1000 times better.

Stress levels?  New York trip is finished and we are improving ourselves and our marriage daily with the help of open communication and the guidance of counseling.

We are also recognizing that maybe, we let the Autism get the best of us for awhile.  (I know I have.)

But Daniel’s health scare served as a stark wake-up call for both of us, and we are trying to change.

Our diets are improving; we’re exercising more.  We are trying to branch out; we are getting out of the house more, and trying to be more social. 🙂

So, yep, Autism is a rough road.  So much of it, frankly, sucks.

But we continue to fight the good fight and try very hard to focus on the positives of life.

We are also blessed to be surrounded by deeply good people who know our fight and help us with it every day.

The glass is truly half full, and we are thankful for it.


2 thoughts on “We’ll Never Know.

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