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.

 

“Why are we still HERE?”

Gabriel’s favorite question.

Allow me to explain.

This year marks the beginning of our family’s seventh year in Jeddah; by far, the longest Daniel & I have ever lived in one place (as a married couple, that is).

In our 18-year relationship, we’ve lived in six countries and moved homes 10 (soon to be 11) times.

But I’ve been perfectly happy with it, as I had my fair share of stability growing up. I lived in Oklahoma until I was 23: same house, same school district K-12, university was only 1 hour away from home, etc.

I think this is why moving around so much (meaning moving countries) hasn’t bothered me, and Daniel’s situation was the very same, but in Wisconsin, and he is so easy-going and eager to see the world, home is wherever his family is.

But if you look at research, people with Autism (especially children with Autism) crave stability and structure.  Yep, two things Daniel & I dearly lacked early on in our marriage (geographically-speaking, that is…) as we happily hopped the globe, on a mission to see the world.

Our sweet Gabriel was the first to hop around with us, and honestly, I think we produced some good stability for him in Abu Dhabi (he lived there ages 1-5) but then we went a little crazy – trying to figure out life – and moved four times in two years, spanning three continents, between his ages of 5-7:

  • Abu Dhabi to Lima
  • Lima to Norman (Oklahoma)
  • Norman to Colorado Springs
  • Colorado Springs to Jeddah

Of course, we had Noah with us as well during this uber-nomadic period, but he was a baby, and he was only three when we arrived here in Jeddah, so Saudi is really the only home he’s ever known.

And same with Samuel, for obvious reasons. He was born here in Jeddah, & truly has AISJ Falcon blood flowing through his veins.

But, Gabriel.

We will never know what those two years of our moving around did to him.

Although I believe we had him enrolled at good (or at least decent) schools, he had some rough experiences (and these are only the ones that we know of).

We know he was bullied in Peru; at one point, his face was shoved in the sand by another child – and to this day he still remembers the feeling of sand going up his nose.

He wasn’t able to talk very well back then, but in his broken up speech, he knew enough to tell us these words in this order: “Boy, Push, Face, Sand, Nose, Hurt.”

In Oklahoma, he was subjected to a very NON-inclusive, self-contained program in school.

***Disclaimer: In my defense, I hadn’t started my Special Education courses yet, so I didn’t yet understand the importance of inclusion; knowing what I know now, we would never have enrolled him at that school

And although he had a wonderful Special Education teacher, we knew something was off with both him and the school.

One day, a couple of weeks or so into school, I went in to see him and he was going to visit the “neurotypical” classroom to which he was assigned.

When we got to the doorway, he didn’t want to go in.

That right there told me that he was uncomfortable, and that he didn’t feel like it was “his” classroom.

He also refused to allow us to put his class picture up on our refrigerator, because all of his classmates had either Autism or Down Syndrome, and we’re guessing (because he couldn’t tell us) that he didn’t like being in a picture that exclusively featured kids with disabilities.

We tried multiple times to put the picture up so he could see it, and every time, he would pull it off the refrigerator and it would end up on the ground.

His school in Colorado Springs seemed to be a little more inclusive, but then by chance, Daniel discovered he was being bullied again.

Daniel was dropping him off mid-day during lunch following a doctor’s appointment: Gabriel sat down at a lunch table, and as soon as Daniel walked away, another boy stood up, raised his hand up, and acted like he was going to hit Gabriel (with the Vice Principal standing about five feet away but he was too busy talking to another teacher to notice what was happening). Gabriel, upon seeing this, just laid his head down on the table.

Daniel just happened to turn around right at that moment and saw what was happening (and if you ever want to see Daniel get furious, just ask him about this incident). Daniel walked back over to the boy and quietly stared him down (and I wasn’t there to see it but it sounds like the boy promptly backed off and grew eyes the size of quarters).

Daniel took Gabriel’s hand, and led him out of the cafeteria, and Gabriel never went back to that school.

Now, that sounds a little dramatic, I realize, but by this time, we already had our jobs at AISJ and we were only two weeks away from leaving Colorado for Saudi – so Gabriel missed a couple of weeks but we didn’t care – better to homeschool him for a couple of weeks and keep him safe and happy.

In February 2011, I wrote a Facebook post saying that Daniel & I were off to a Search Associates job fair in Boston, and if/when we secured jobs, we were going to move there and stay there F-O-R-E-V-E-R.

Two days later, we were hired at AISJ, and we were ready for the long haul.

So here we are, nearly seven years later, still at AISJ, most certainly in the thick of the long haul.

But Gabriel, in spite of the Autism and usual longing for structure and stability…  It’s not the same for him.

He is used to moving around the globe, and now, even after all this time, still hasn’t adjusted to staying in one place.

He is by FAR the most vocal in our family about wanting to leave. He’s effectively spent 10 years of his life in the Middle East (four in Abu Dhabi, and almost seven here in Jeddah) so he is ALWAYS craving cold weather, rain, snow, doesn’t like palm trees, etc…

Everything that is the polar opposite of here.

He also remarked that every single classroom teacher he had in Elementary (Grades 1-5) has left Jeddah since he’s been here, and he’s right. He’s also lost friends he grew up with to Lebanon, South Africa, Switzerland, the UK, and the US – so while there is indeed longevity and stability, there’s also the transient nature of the international school community around him that has been hard on him.

And so, hence, his favorite question is…..

  • Mom, WHY ARE WE STILL HERE?
    • WHY ARE WE STILL HERE WHEN EVERYONE ELSE has LEFT?!?

Gabriel, we are still here because you have exactly what you need at this point in your life, even though you cannot see it: you have stability and structure.

You are not EXcluded here.

You are not bullied here.

You have known many of these kids since 1st grade, and the kids here respect you for who you are.

**And……  It doesn’t hurt that all the kids know that Mommy, Daddy, and all our wonderfully supportive teaching colleagues are always watching you to make sure you’re OK… 😉

You also have opportunities you might not have had if we lived anywhere else: you learn Arabic, you’ve walked inside the Pyramids, you’ve eaten Nasi Goreng on a beach in Bali.

And, you are safe.  Quite honestly, you are safer living here, going to this school, than you would be in the United States (and don’t get me going on that issue…  I’d never shut up).

AISJ is a family.  We have a wonderful community and you are loved and supported in ways you will never know.

We want you and your brothers to focus on growing, learning, playing, and experiencing the world.  There is no need to worry about adjusting to new places and new people, even though we know you are strong and are able to do it, because you’ve proved you can do it, on multiple occasions in your life.

You do not comprehend this now, and that’s OK.  But I pray that one day you will understand why we have chosen this path for you and your brothers.

 

 

 

 

 

 

Travel and Autism – update

What a difference.  Amazing, unbelievable, MAJOR difference.

In my “Travel and Autism” post from March 3rd, I wrote about how nervous and basically traumatized Noah was during our recent, three-day hiatus to Egypt, which included his…

  • fear of flying
  • general refusal to eat anything new and unfamiliar
  • vomiting multiple times before and during the trip
  • constant crying about missing home and his two best friends
  • his almost hourly reminders to us of how many sleeps we had until we went home

I also wrote about how we (Daniel and I, and his Learning Support team) were all going to work together to try to mentally prepare Noah for our upcoming spring break trip to Greece and Cyprus – which I anticipated would be much more difficult for him, given that we were taking more flights and would be away from home twice as long as our Egypt trip.

Well, we returned home, and I think we can all call this an unqualified success!

He was H-A-P-P-Y.  

He didn’t get sick once.

He didn’t ask to go home once.

He still got nervous on the plane and refused to eat, but he knew we we had his familiar, “comfort” food with us and ready for him, and he requested it often.

It was night and day from our Egypt trip.

Pleeeeease let me tell you what we did! 🙂

In Noah’s Learning Support classes and Speech Language sessions, in the weeks leading up to spring break, they worked with him on acknowledging and expressing his feelings – and then talked about strategies he can use when he is experiencing these different emotions.

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They also had him read books about traveling, which could help him relate to the characters in the stories who are also going on trips, and they even did some role plays about traveling, even creating a fake passport for a future trip he might take.

For me, I created a highly individualized and visual social story, and showed it to him about five days before the trip.

Finding a good time and location to show it to him was important, because I didn’t want him to be upset before watching it (which might set a negative precedent), so I needed to find a time / place when I wouldn’t be taking him away from any of his preferred activities (i.e. iPad, TV, or while he was shaking / perseverating).  Had I done so, it might have set me up for failure from the get-go.

So, I decided to show it to him while he was in the bathtub.  I knew I would have his full attention and no other of his usual distractions would be available.

It worked beautifully.

So the social story started out by showing him that this story was ALL about him, and trying to explain the definition of “traveling.”

To make it super personal, I tried to include him in every picture.

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I then tried to build some confidence by showing him that he’s already been to many different places.

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I also tried to show him what it means to take a vacation, since different people use different words when they talk about going away, i.e. travelling, vacation, and for some reason, in the international realm, a common term used is “going on holiday” (although growing up, this phrase was never used in my area of the world; I never heard it until I moved abroad).

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I then reminded him that he has been on many planes, again, trying to reassure him that this experience is not entirely new because he has done many of these things before.

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And then, of course, I needed to remind him that he would see his friends again very soon!

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**This slide marked the first time he seemed upset.  Up until this point, he really seemed OK; I think he liked seeing himself in all the pictures, and he acted like he was understanding the point of the story.

But, when he saw this one, he nearly started crying.  So, I reiterated that it would only be 10 sleeps, and then quickly rushed to the next slide.

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Then I showed him a series of pictures including what our hotels would look like, the food we would eat (his preferred foods) and that we would sleep.Screen Shot 2017-04-09 at 12.47.14 AM

So, at the risk of becoming repetitive, this was the main gist of the slide show.

In total it was 34 slides long, and consisted of much of the same idea as shown here – showing him pictures of the resort we would be staying at, castles we would be visiting, and – most importantly for him… the play areas we would visit!

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This was the best, because while he understood what was about to happen and wasn’t necessarily thrilled by the idea of going to a castle, THIS got him excited.  And in the days leading up to the trip, this picture was what he talked about the most.  (He loves playing in ball pits!)

Sooo…  it was magic.  We were so happy, he was happy, and now we know what to do before trips.  And it was beneficial for Gabriel as well; he became very interested in the slide show when I was showing it to Noah, and although he didn’t necessarily need the visuals of what was yet to come, I do think this helped him feel more comfortable and prepared too.

And now, on to creating the next social story.  Our summer break is rapidly approaching (Hallelujah!) and we have two months of travel ahead of us throughout SE Asia.

*May the travel Gods smile on us and pleeeease let the social stories continue to work their magic on our sweet boys!*

A Special Needs Mom’s Rant: Inside Out Style

I hope those who are reading this have seen this movie.  It will make so much more sense.

Joy, Fear, Anger / Disgust, and Sadness.

I’ve got them all this week.

Let’s start out nice.

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In one of my past posts, I talked about the “Autism waiting game,” and how we as special needs parents wait much longer for things to happen than most parents (i.e. first words, first bike rides, etc).

But when that progress f-i-n-a-l-l-y happens, how beautiful and sweet it is.

So for some reason, Daniel and I have been super blessed with a nice dose of PROGRESS lately on all levels.

For one, Samuel’s speech is exploding.

Just in the past week, for the first time ever, I saw him point to Noah and say “NO-AH,” and in the same day, he said the name of one of Noah’s little friends, “HEN-REE.”

Then last week in the morning, I asked him where Daddy was, and he replied – with speech just as clear as day – “I don’t know.”   Another first. If I hadn’t been sitting down I would have fallen over.

He’s also inquiring, and trying to show when he’s wondering something.

Case in point: Daniel usually picks him up at the end of the day from the Pre-K playground, but Daniel had been in the New York for that past week. So one of my colleagues came through the door of the playground to pick up her daughter and saw Samuel sitting on a tricycle, watching who came through the door. She went over to him and said, Hi Samuel, and he held up his hands as if to question something, and asked, “Daddy?”

That in itself is amazing (and preciously heartbreaking…) – but he was actually able to communicate that he was wondering where Daddy was.

We’re also hearing things out of Noah that we’ve never heard before – almost on a daily basis now. He’s speaking in full sentences, when we are so used to one-two word phrases.

For example, the night after Daniel left for New York, Noah came in and said, verbatim,

“Mommy, Daddy is in New York City. Can I sleep in the bed with you?”

What I would usually have expected to hear would be something like,

“Mommy, Daddy on airplane? Sleep here?”

But NO – I enjoyed hearing two full, BEAUTIFUL, grammatically-correct sentences.

It’s amazing what kinds of things can excite you as a special needs parent.

Our nine year old can finally speak in full sentences…!  Break out the wine! 🙂 🙂

And, Gabriel is rocking the trumpet.

In his class, his Band teacher has a fun way to keep track of her students’ progress – using a Karate belt color system – so if you’re a White belt, you have mastered the very basics of holding the trumpet correctly, being able to play a few notes, etc.  If you’re a Yellow Belt, you’ve gained some new, more difficult skills, etc.

She has large pieces of paper on the wall of her classroom, each in a different belt color, and so if you have mastered the “White belt” skills, your name goes on the White Belt piece of paper.

So for the first nine weeks or so of classes, Gabriel refused to participate in this competition, and his name was nowhere to be found on the wall – while his classmates’ names were not only there but were progressing up the colors.  I can’t imagine how sad that must have been for him, but he’s so afraid to put himself in any type of position where others might have a chance to make fun of him that I can see why he didn’t want to do it.

Once I heard he refused to be part of this, we stepped up his practices, found a fantastic private tutor for him once a week, and we encouraged him to start trying to be part of it. He wasn’t near as resistant as I thought he would be.  Actually, he didn’t resist at all; he just needed a loving push. 🙂

So I’m proud to say that he has worked hard, and has improved so much that he’s gone through the White belt… and the Yellow belt…. AND the Orange Belt… and just today he told me his name is now on the Green Belt!

And, I can’t believe how well is he playing compared to when he first started – and how quickly he has picked up sight reading musical notes and catching onto the rhythm.

So Samuel and Noah’s speech / language has improved dramatically, and Gabriel is blowing up the trumpet.

And I’m trying SO hard to embrace it, but it’s tough to do so.

Because I know it won’t last.

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We as special needs parents wait for those positives and little successes for SO long, and then they come, but it’s like, I can’t enjoy it because I know it won’t last, and I’m afraid of the hurt that will follow.

Noah and Samuel’s speech-expanding bonanza will slow down, and Gabriel’s quick rise through the trumpet-karate-color-wheel is certain to start tapering off.

And then, the hurtful, long, drawn-out waiting game for the next taste of success continues.

Yes, I know, I’m talking like the glass is half-empty.

And I don’t mean that as a cliche.

It’s literally that sinking-in-the-pit-of-your-stomach-feeling you get when your wine glass is half empty and you know you can’t have anymore beyond that glass because you’re a lightweight and won’t remember the rest of the night if you drink anymore…

THAT kind of half-empty just sucks.

And I’m so afraid to feel that kind of disappointment that it stops me from fully enjoying the happiness that should accompany such nice success in my children.

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And, maybe it goes along with the pessimism, anger, and negativity of being a special needs parent in general.

Because sometimes, it feels like a disgusting, cruel joke.

It’s like this: you have a special needs child(ren), which is in itself, VERY difficult.  I don’t believe I need to outline all the reasons why.

Then, guess what you get to look forward to?  It becomes much, much tougher to find a school that will even accept your child(ren) because of his/her special needs (and I’m specifically talking about the international schools realm, not US public schools).

Then, guess what the next perk is?  If/when your child(ren) gets accepted, that school is going to make you pay much more money than the parent of a neurotypical child, because your child(ren) has special needs.  (This I get – more services means more money, but it still hurts..)

THEN, you have no idea what is going to happen to your child(ren) when he/she leaves High School, because he/she/they may not be able to live on their own, and university is a far-off, very possibly-unrealistic dream.

PS – Don’t ever complain about empty nest syndrome around a special needs parent.  Special needs parents would kill to feel that empty nest syndrome.  That means your child is independent enough to make it on their own.  Yeah, we want that too.

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So, yeah.  This is life.

I suppose, sometimes, Moms just need to vent, rant, whatever.  And this is it – a full blown rant if I’ve ever ranted.

And, I’m really, really sad this week – for several reasons (none of which have to do with Daniel or the boys, thank goodness) – other than the quiet, ever-present sadness of being a special needs parent that tends to ebb and flow.

PS – When I’m brave enough to start writing about my own issues outside of being a special needs Mom, I’ll open up about other reasons that I’m sad, but I’m not quite there yet.

But I suppose it’s all connected.

I wonder what kind of person I would be if I weren’t a special needs parent.  I know it’s changed me, and I don’t know if it’s for the better or worse.

But I hope it’s for the better.

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So, there is no Inside Out character for the emotion of HOPE, so I’ll use the picture of Julia, who is the first Autistic character to be featured on Sesame Street.

Because this amazing act of promoting autism awareness by Sesame Street is unmatched, and it fills me with hope.

And, I also refuse to end this post with sadness.

I have hope, because I must.  Without hope, what’s the point?

AND, I have gratitude.  I love my children with all my heart and I wouldn’t trade them or who they are for anything on Earth.

And maybe Gabriel will end up being first trumpet at Lincoln Center.  Maybe Noah will be a broadway actor with beautiful articulation in his speech.  Maybe Samuel will be Science Professor, a plumber, an author, a physical trainer, w-h-a-t-e-v-e-r he wants to be.

I want my beautiful boys to be whatever they want to be: independent and confident enough to live how they would choose to live.

**************************

When I started this blog last year, the very first thing I ever said was that sometimes I feel sorry for myself.  So anyone reading this has had a front-row seat to my pity party.

But it made me feel better to write it, so at least something good came out of it.

Thank you for listening.

 

 

Travel and Autism

Gabriel turned 13 years old a couple of weeks ago, and we took him and his brothers on a “bucket list trip” to Cairo, Egypt to see the Pyramids and Sphinx – to mark his official entrance into manhood!

This trip necessitated a very short, two-hour flight between Jeddah & Cairo – and three days away from home.

And, our sweet little Noah was terrified.

In spite of our international lifestyle, including Noah being born in Abu Dhabi and our literally flying all over the world with him from birth on, Noah has been nervous on airplanes as early as he was old enough to know what was going on.

And truth be told, I share this fear.

I make it a point to sit next to Noah during our flights, because I know that during every take off, any turbulence, and every landing, his hand will be squeezing the fire out of mine, and his head will be firmly buried in my chest, with my arm tightly fastened securely around his body.

And I have to admit, this comforts me. Not only in the “I’m being the best Mommy EVER! sense,” but, in the fact that I need this physical comfort too.

And, personal note here: I’m mentally working on this fear of flying issue; it’s not fun and I want to be over it… But in the meantime, valium and wine (not necessarily in that order..) help tremendously.  😉

But back to Noah: what also hits him hard is the fact that he is an UBER picky eater, and he shuts down on flights. Won’t eat, won’t drink, etc.

He’s gotten better though; in past years, on 15-30 hour trans-Atlantic marathons (i.e. Tampa-Atlanta-Dubai-Jeddah), after we finally reached Jeddah, Noah was so sick and dehydrated that we had to take him to the ER and get him on a saline drip for a few hours.

PS – We don’t do this anymore; we definitely learned our lesson. Any time we take massive trips, we break them up and take daylong layovers to give the boys (and us) time to recoup.

Anyways, fear of flying is certainly not always synonymous with Autism, but I’ve no doubt his Autism contributes to his anxiety – along with the plane ride itself, the lack of familiar food, and especially the bigger, overall concept of the unknown.

Travelling, by definition, is an all-encompassing series of NEW experiences, and Autism doesn’t sit well with “NEW.”

Consequently, as Noah has gotten older, he has become a serious homebody.

Case in point: We arrived in Cairo, and the very next morning, he started crying and saying, “I want to go home.”

**BTW, this is new for us; Gabriel is perfectly fine on planes, loves going to new places, and when we’re gone, NEVER asks to come home…**

It’s also new in the fact that this is the first time Noah has displayed this heightened level of anxiety – probably because he is now old enough to know and understand what is coming; he knows if we say, “Noah, we’re leaving on an airplane in three days,” he comprehends it, internalizes it, and then obsesses on it.

So in the week leading up to the trip, Noah started vomiting in the mornings. Not because he was “ill” with a virus or infection, but because of anxiety.

And he vomited multiple times the morning of the flight, on the flight, and even the morning we went to the pyramids. We were literally standing at the foot of the Great Pyramid of Khufu, and I had Daniel, Gabriel and our kind tour guide making a human shield around us while Noah threw up into a plastic bag I was holding.

But then once he got it out of his system, he was fine.  We rode camels about 30 minutes afterwards, and a camel ride is NOT a smooth ride – were all thrown around, shaken up, etc. – and he was stellar.

He is such a little rockstar.  🙂

He even posed for this pic right after the finishing the camel ride, and while he was posing, said in the cutest voice, “I am STRONG!”

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Indeed you are, my little love.

So it’s the mornings, the uncertainty of what’s coming next, and the obsessive desire to be back in familiar surroundings.

We still saw what we wanted to see, but cut the morning short – and once we got back to the hotel and he had his iPad, he was fine. Except, still asking every hour or so, “Mommy, can we go home?”

What was very interesting was the night before we left, he actually became excited for the airplane.

Noah: “Mommy! Tomorrow, sleep, wake up, go to airplane, and go HOME!!!!” with a big, beautiful smile.

Me: “Yes, baby, tomorrow we go home.”

Noah: “Oh, THANK YOU MOMMY, thank you so much!!” followed by a kiss for Mommy, which Mommy always loves, of course.

What Mommy does NOT love is the fact that in one month, we are leaving again on another short trip (Oh wait, definitely, Mommy loves that fact! 🙂 but it’s the attached fact that Mommy doesn’t love – that Noah is probably going to go through this again, and this time it will be worse (i.e. 7-day, spring break trip to Greece and Cyprus: more flights, longer flights, and longer overall duration of trip).

However, this is where I am grateful for my Special Education training, as I will be more prepared this time with a picture-filled social story, detailing every step of the trip for Noah so that he knows, within reason, exactly what is coming:

And, thank God Noah has a hands-down, aMAZing Learning Support team who is going to work with us on getting him ready.  Collectively, we will be:

  • teaching him breathing / relaxation strategies
  • soliciting help from some of his little friends to make him videos of encouragement that he can watch while he’s away
  • tasking him with taking pictures and making a little picture book (or video blog, not sure which yet) to show his friends when we get back
  • role playing going on a trip with him; packing a bag, going to the airport, taking pictures of new sights, etc. to try and get him used to the idea of seeing new things, while still feeling safe and secure in a familiar environment
  • any other ideas are welcomed…!

And, because he pretty much refuses to eat anything but very familiar foods, Daniel and I are going to prepare and take a massive “familiar food” care package with us.

So…… This is the plan.  No idea if it will work, but I’m hopeful.  If you’re failing to plan, you’re planning to fail, right?

We will give it our best go to try and help him decrease his anxiety, while trying to heighten his enjoyment of the trip, and hopefully expanding his confidence if/when he overcomes this fear.

I just deeply hope that in time, same as with Gabriel, Noah will learn to look forward to and appreciate new experiences: including heading out there into the unknown to see the world.

One last thought.

(Classic soapbox moment ahead….)

There may be people reading this who don’t value travel the way Daniel and I do.  You may believe that we should move home to the US and cater to Noah’s wishes because of his Autism.

With all due respect, we completely disagree.

First of all, we can’t shelter Noah from change (even in the US), and it would be highly unhealthy to even attempt to do so.

Second, Noah is very stable here in Jeddah; we’ve been here six years, with no immediate plans to leave, and he has (I believe I mentioned this before) an absolutely amazing (over the top, freaking AMAZING) team of Learning Support professionals who love him as their own and take care of him at school. Personalized care I’m certain we would never get in the states.

Third, Daniel and I live where we do and the way we do because we believe there is too much beauty and diversity in the world to not go out and experience it to the greatest extent possible.

And we want our boys to see this world.  We want to give them the world.

We ask others to open their minds and include our boys in their lives, in spite of their disabilities, but it’s equally important for our boys to have open minds and be open to others’ differences, cultures, etc.

And for us, this ex-pat lifestyle is the most authentic way to show them how different, and beautiful, we all are.

Noah knows he’s loved.  No question there.  And if we truly believed we were hurting him or his brothers, we would adopt a different lifestyle.

But in our heart of hearts, as parents, we believe he will be just fine.  Even more than fine, hopefully.

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Playing the Autism Waiting Game

Happy New Year! (about a month late, I know)

This past month, I spent some time reflecting on all that happened last year – especially with how our boys grew and changed.

And I have to say, some truly amazing things happened in 2016 with our boys – some major milestones were met.

Samuel became potty trained, and our family said farewell to a decade of buying diapers.

Gabriel learned to ride a bike.

Noah started having play dates with friends (and his first sleepover).

But, it also occurred to me how much later in life these milestones happened for our kids than for neurotypical (or “normal”) children.

Autism creates all sorts of delays in social and emotional development, and in some cases, these delays take years.

  • Samuel became potty trained – at age 4 (usual age for potty training: 2-3)
  • Gabriel learned to ride a bike – at age 12 (usual age to learn: 3-8)
  • Noah had his first sleepover– at age 9 (usual age for boys: 4-5)

Of course, these milestones vary and sometimes depend on your culture, but looking up some reputable American sources, these were around the usual ages.

For anyone who has seen my Facebook posts, I’ve happily screamed about all three of these events on my timeline for anyone who would listen.

Because milestones are important to parents.

They help us mark the occasion that change is actually happening – that all of the work we’re doing as parents can actually produce a positive result – which – in the midst of all that hard work, is often hard to see.

While Daniel and I were both ecstatic to have Samuel finally independent enough to use the potty on his own, and while we are super proud of Gabriel finally becoming brave enough to try the bike on his own – the fact that Noah had a sleepover for his 9th birthday earlier this month was especially profound for our family.

Daniel and I can’t stop talking about it – because it is literally the first sleepover our family has ever hosted – as Gabriel has never had a sleepover in his life.

Now, this may seem to most like a very simple thing that we could easily control, and you’ll probably think it’s our own fault as parents that we haven’t hosted a sleepover.

But the thing is, Gabriel never had any friends who wanted to come over to our house and spend time with him (things are looking up however… – I’ll keep you posted).

In truth though, it has been the rare occurrence that Gabriel has been invited to any birthday parties, and he himself has never been invited to any sleepovers. He continues to sit by himself every day at lunch, and wanders around by himself during breaks between classes.

In honesty, a lot of his isolation is self-inflicted. Kids have tried to reach out to him on multiple occasions, and he’s been out & out rude to them.

Defense mechanism, I get it.

Daniel and I even offer to sit with him at lunch (which, yes – that would probably be very uncool for a teenager to have his parents sit with him at lunch) but getting back to my point – we’ve yet to really have the opportunity to host his friends at our home, the way that other parents do with their children’s friends.

And Noah has been no exception to the Autism exclusion factor: he’s definitely had his share of kids ostracizing him in the past. I want to hang my head and cry when I think of some of the things I’ve heard kids say to him.

But now, for some wonderful reason, the stars have magically aligned and Noah has not one, but two – really good friends. And for the first time, after being parents for nearly 13 years, we as a family finally felt like the conditions were right to host a sleepover for one of our boys.

For Noah’s 9th birthday, we took him and his two friends, along with Gabriel and Samuel, to the massive, world’s largest (literally) Chuck E. Cheese here in Jeddah, and watched our birthday boy run around playing and screaming with his “friends.” His friends.

I just keep wanting to repeat it: my son has f-r-i-e-n-d-s!!!!!

Daniel and I watched Noah (while also scrambling around to keep up with Samuel, who was definitely getting his fill of fun) and every few minutes, Daniel and I would exchange quick, Mommy/Daddy glances filled with amazement, surprise, and pure, PURE happiness.

As parents, we have gone for so very long watching our little boys be excluded and wander around full playgrounds by themselves.

I think that takes a toll, emotionally. It must, as we don’t know (and will never know) what it’s like to have a “normal” child who easily makes friends.

But at this moment, we actually got to watch our boy be INcluded. To have fun with others, not merely exist in the midst of others.

We became “sponges” – because Daniel and I soaked up that experience unlike anything else in our lives.

However, my heart still hurt because Gabriel seemed lost. He’s almost 13 so he’s pretty much grown out of Chuck E. Cheese, and he wandered around by himself for most of the evening. The saving grace for him was near the end of the night when we got everyone together for a couple of games of bowling; then he came alive and loved it.

On the drive home, our SUV was absolutely weighted down, filled to the brim with boys (and me. 🙂

Simultaneous loud chatter, laughter, fighting over who gets to use the iPad next, etc.

Best sounds I’d ever heard.

I was so incredibly happy. I was floating and fighting back tears at the same time.

We’d waited a very long time for this; a milestone that usually takes 3-4 years as a parent took us 12 years – but it was worth the wait.

And the actual sleepover was amazing. We were so happy to feed them cake and ice cream and make sure they had their sleeping bags situated and a fun movie to fall asleep to and plenty of pillows and etc., etc., etc.

Things that other parents might find annoying or commonplace – we relished in every little detail.

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So now, I’m addicted…!   I’m becoming that “annoying Mom” to my boys’ friends’ Moms, and setting up play dates as often as I can.

But I’m also nervous. I’m afraid it’s too good to be true.

Dynamics change, and what if Noah loses his friends?   What if they get tired of him? What if he goes from playing with others at recess back to sitting on the picnic table by himself, head down?

I’m bracing myself because I know this is a very real possibility – and make no mistake – if and when it happens, it will hurt like hell.

But this is life, and that’s OK. This even happens to neurotypical kids. And I know now that I’ve been too complacent with expecting my boys to do all the social legwork on their own. I need to try and facilitate more opportunities for them to interact with other kids, even if it isn’t perfect and even if in the midst of a play date or sleepover they are excluded, at least we’re trying.

This is especially true with Gabriel. While he’s probably too old for sleepovers now (not sure; is 12 too old?), I’m working on facilitating situations where he can interact with others his age. If he won’t initiate friendships on his own, I know I can’t force it, but I can sure try and set the stage.

And Samuel….?  He is the most aggressive and social of our boys.

I worry about him because I’m afraid that being ostracized by others will hurt him the most, as he already displays such a deep desire to be included in everything around him (a character trait that makes me so happy, but also terrifies me at the same time). I pray he doesn’t lose that drive, and that we are able to provide the interventions that he needs to be able to make and keep friends.

So, frankly, playing the Autism waiting game sucks. It’s not fun.

I suppose it makes us as parents feel left out too – to see other parents enjoying their children’s milestones so much earlier in life.

But I’ll tell you this – the waiting (even waiting for years…) makes the actual, eventual occurrence of the milestone very, very wonderful.

Even though the progress is slow, as long as my boys get there and eventually reach those milestones, I can certainly wait.

 

Mommy, Why did Jesus make me Autism?

Hardest question I’ve ever been asked….

About two months ago, during school, I happened to see Gabriel during one of his breaks.

He was sitting outside on some bleachers, deep in the middle of a group of boys.

This both shocked and excited me, because this was different!  He usually spends his breaks either sitting by himself on the bleachers, or just kind of wanders around by himself, killing time until the next class.   

So, as I looked closer, not only was he sitting amongst a group of boys, he was talking!  Like, in a highly animated way, as if he was telling a story.

This was A-MAZ-ing!  

I came even closer as I wanted to see exactly who he was talking to, so I could make mental notes of who the boys were who were being so nice to him and listening to whatever he had to say.

And then, my heart dropped from out of the clouds.

No one was looking at him or paying attention to him.  He was having a full-on, highly animated conversation – with himself.

This was new; I’d never seen him do this before.

And not only had I never seen him talk to himself before, I most certainly never saw him do this while sitting in the middle of a group of boys.

–Oh my sweet angel, WHAT are you doing?  Are you SO longing for a friend that you’ve created an imaginary friend?  Or, have you become so desperate for others’ attention that you’re now behaving in a manner which you believe will give you attention?  AND, you must no longer care if that attention is negative?–

I fought back tears, felt my stomach sink, and just sat there awhile and watched him.  He couldn’t see me (and I was very thankful for this) as I didn’t want him to catch me watching him while I was undoubtedly looking so heartbroken.  (I was watching from inside our Middle School teachers’ lounge – which has dark tinted windows that prevents students from seeing in.)

I carefully studied the boys sitting around him, waiting for a side look from one of them, or a comment, or any minuscule hint of bullying – which would have automatically launched me off that couch and outside to deal with it in a second – but, they all seemed to be so engrossed in their own conversations that they either didn’t notice him, OR, they were all doing an excellent job of ignoring him.

I watched for a few more painful minutes, and he finally seemed to settle down a little, and then thankfully, the bell rang and they all got up and dispersed to their classes.

I knew he had dodged a massive bullet, and I started to plan out what I was going to say to him that evening about it.

So that night, I sat him down and gently said,

Me: “Gabriel, I saw you today during one of your breaks, when you were sitting with a group of boys.  Do you remember that break?”

Gabriel: “Yes.”

Me: “It looked like you were talking to someone.  Who were you talking to?”

Gabriel: Silence

Me: “Can you tell me?”

Gabriel: Confused and afraid glance

Me: “Gabriel, were you talking to yourself?”

Gabriel: “Yes.”

Me: “Do you know why?”

Gabriel: “No.”

Me: “Gabriel, it’s OK to talk to yourself.  People do it all the time – but they do it when they’re by themselves, in private.  Like when you’re at home in your room.  But, when we’re around other people, like at school, if we have thoughts in our heads, we need to try and keep them in our heads and not let them come out of our mouths – unless we are talking to another person. “

Gabriel: Nods head, “Ok.”

*Long Pause*

Gabriel: “Mommy, maybe my Autism made me do it?”

Me: “You might be right, Gabriel, and that’s OK.  Remember we said that Autism is a brain difference?  This might be one of those differences, and again, that’s OK.  You can control this.  When you’re at home or by yourself, you can definitely talk aloud to yourself if it makes you feel better.  OK?

Gabriel: Silence, thinking.

Gabriel: “Mommy, why did Jesus make me Autism?”

Oh my God.

–I catch my breath and pray a three-second prayer for the right words–

Me: “Gabriel, Jesus loves you, and He made you in a very special way.  There’s no one in the entire world the same as you.  Jesus created you just the way you are, and He wants you to do wonderful things.

Your autism is what makes you, you.  Please remember it’s not a bad thing; it’s a difference.  And there are many ways that your Autism helps you.  You know how you can remember so many things?  So many details of all the places we’ve been and the things we’ve seen?  You know how you can remember so many of the world’s different currencies and how you know all of the different “Wonders of the World” structures and where they are?  How you can remember so many of the different flight times between all the places we’ve been?  

Your autism helps you remember all of these wonderful things, and it’s going to continue to help you learn as you get older.  What we have to do is use your autism for the good things, and control it when it wants you to do things that might actually be a little too different – like what happened today with talking to yourself.”

Long Pause

Me: “Do you understand what I’ve said?”

Gabriel: “Yes.”

Me: “Can you tell me what I just said?”  (which I have to do because any time I ask him if he understands something I’ve said, his default answer is always “Yes.”)

Gabriel: gives me a pretty good, abbreviated version, hitting the important points of how he’s special and he can remember  a lot of things, and how Jesus loves him.

I was relieved with his answer, but he still didn’t seem completely convinced.  At this point, he kept trying to leave the room, so we took a break from the conversation.

And I believe it worked, because I haven’t seen him talk to himself since.

But, in true autism fashion, Gabriel still tends to repeat questions – so I’ve had to re-answer the question, “Why did Jesus make me Autism?” probably 8-10 more times.

And every time, I try to remind him of the fact that Jesus loves him, he was created exactly the way Jesus intended, and that he can use his autism for good.

But the problem is (and I’ll never tell Gabriel/ Noah/Samuel this) that I’ve asked Jesus the same thing a million times.

Jesus, WHY did you make my children autism?

Because I hate autism.  With every fiber of my being.

I don’t want it around.  I want it out of our lives.  I don’t want to figure out how to use it for good – I just want it to disappear and stop clouding my children’s (and my students’) minds.  

And believe me, I want to believe everything I’ve said to Gabriel – that Jesus made him exactly how He intended.  But this is where I don’t understand Jesus’ reasoning.  

The negative effects resulting from autism have, by and large, outweighed the positive effects.  

So again, why????  Why our children?  And why us?

Anyways, this is my daily struggle – asking questions to which I’ll probably never know the answers.

So honestly, it’s here to stay, so why fight it, I guess?  

Just turn that fight into a fight for inclusion and acceptance, constantly try to help those with special needs improve their lives, and continuously search for new ways to use autism for the good.  

About all I can do.