A Question about Samuel

When a couple gives birth to a child with Autism, the presence of Autism is not evident right away.   It is impossible to predict before birth, as at present, there is no test that can be done to detect Autism in utero (as with Down Syndrome).

Of course, individual children vary in when they begin to show signs of Autism, and with our boys (particularly Noah and Samuel), once they reached about a year and a half and weren’t speaking any words, we knew.  We had each of them assessed at two years old – and with Noah, an iron-clad diagnosis was confirmed in his assessment report.

But with Samuel, it wasn’t exactly “confirmed.”

Samuel’s assessment specifically states that Autism is “suspected,” based on our family history and his significant speech delay.  It recommended that he be reassessed in 2-3 years to re-evaluate, and perhaps a diagnosis of Autism would be found at that time.

So, when I said that Samuel didn’t talk at a year and a half, and we “knew” he was Autistic, I should say, we THOUGHT we knew.  In any case, we strongly assumed that he had followed in his brothers’ paths.

Case closed, move on, begin the early intervention…

But a month or so ago, one of our dear friends – who is an Elementary Learning Support teacher and who has had numerous chances to observe Samuel both in the classroom and at our house – brought something to our attention.

She asked, “Is Samuel really, really Autistic?  I’m not sure I see it.  I don’t see a lot of the signs.”

My knee-jerk reaction was, “Um, OF COURSE he is…..”

The possibility of Samuel not being autistic had honestly, never entered our minds since Samuel’s assessment at two years old.

But, we listened and talked about it more.

Samuel…..

  • has an uber-loving and highly social personality – and is extremely outgoing with his family, friends AND even strangers
  • is operating at an age-appropriate academic level
    • except for verbal expression (due to his speech delay)
  • demonstrates excellent eye contact with others
  • comprehends and follows oral directions such as walking in a line or sitting on a carpet with his peers
    • for the most part…
  • is very perceptive of others’ emotions and shows extreme empathy
    • especially towards his big brother, Noah…  If Noah is upset, Samuel gets upset – and then does everything under the sun to try and cheer Noah up
  • shows good joint attention
    • i.e. when you point to something like the moon, and say, “Look!” and he looks at the moon with you
  • engages in appropriate use of imaginative play with toys
    • i.e. using a toy car as a car and not as something random like a hair brush
  • is pretty easy going and flexible
  • has minimal issues with transitions – even when moving to non-preferred activities
  • shows no outward, physical signs of Autism
    • no stereotypical, repetitive motor movements
      • similar to Noah and his “shaking” of the strings/leaves or Gabriel and his occasional “jumping and flapping” when he gets excited
    • no obsessions with toys, foods, etc.
    • no echolalia
      • i.e. pervasive repeating of phrases, such as lines from movies, spoken completely out of context

And that is a long list of characteristics that don’t point to Autism.

To double check myself, I went through the DSM V (Diagnostic and Statistical Manual – 5) which is the “bible,” so to speak, when it comes to listing specific characteristics of Autism, and honestly, most of what was listed didn’t match Samuel.

However…..

The overwhelming characteristic that Samuel displays that makes him a candidate for Autism is his severe speech delay – and his difficulty with articulating his sounds/words.

This, in and of itself, contributes to significant delays in his ability to socialize with his peers, communicate his thoughts during class and at home, and is largely the reason he receives such a significant amount of extra support at school.

He also seems to have hyper-sensitive hearing and needs noise-cancelling earphones whenever he is in a loud environment (such as a school assembly) – which is also a common characteristic of Autism.

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And above, I mentioned that he usually follows verbal directions in class; well, yes and no.

He is MUCH better than he used to be with following directions.  He used to not be able to sit on a carpet and listen to a story, but now he can – and he will ask questions and engage in the story.

So, is he Autistic?  Is he REALLY on the Spectrum?

My guess – probably, but on a mild scale.  OR, he could have a new diagnosis called “Social Communication Disorder” or SCD – which is a form of “Autism Lite,” if you will; people with this disorder display some characteristics of Autism but not enough of them to be diagnosed with full-on Autism.

In fact, when Gabriel and Noah were diagnosed, way back when, both boys were officially diagnosed with Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS) – which falls along the same lines as SCD – Autistic traits, but not enough of them to be considered Autism.

However, PDD-NOS and Aspergers Syndrome no longer exist; they are no longer valid diagnoses in the DSM V.  Now, anyone who had those diagnoses come under the large umbrella of Autism Spectrum Disorder, and there are now three levels of severity:

  • Level 1: Requiring Support
  • Level 2: Requiring Substantial Support
  • Level 3: Requiring Very Substantial Support

Anyways, we are having Samuel reassessed in the fall and should finally have a definitive answer to this question, but again, my guess is that he will be officially diagnosed with either SCD or Level 1 Autism.

In the meantime, we couldn’t be more pleased with his progress, which we completely attribute to the inquiry-based, hands-on, student-driven instruction he’s received from the amazing Elementary educators at AISJ.

He’s also had several other critical areas work in his favor: because we were on guard for Autism when he was a baby, Samuel received very early intervention, which is deeply important in helping children with ANY disability start off on the right path.  He has had the stability and structure of living in one place his whole life, has grown up with the same peers, and has been blessed to have two big brothers to watch and mimic, and help guide him.

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We are praying that his wonderful progress continues. 🙂

“B is for Break”

When Gabriel was in Kindergarten, we were living in Norman, Oklahoma, and he had a fantastic Special Education teacher named Mrs. Jennifer Book.  One thing Mrs. Book did with her students was teach them sign language; not the whole language, just some basics, such as the alphabet and some key words such as “more,” “stop,” “play,” “be nice,” and “thank you.”

Many of these signs really stuck with Gabriel, and he used them heavily with us.  Even though he could verbalize most of words he was signing, he would sign them while speaking them, which seemed to make him feel better; more confident that he was getting his point across, I suppose.  We didn’t mind; we were thrilled at ANY kind of communication coming from him, verbal OR nonverbal.

Signing has even helped us communicate across a long distance, at times.  For instance, Gabriel and I signed to each other while he was on stage during a choral concert back when he was in 2nd grade.  I was SO proud of him for standing up there and attempting to sing with his classmates that I signed to him the words, “I’m happy,” and he signed back, “Thank you.”  Needless to say, some of the signs have worked so well that we started using them with Noah, and then with Samuel.  To this day, we have between 10-20 different signs that we use with our boys almost daily.

But the one I have used the most, both personally and professionally, is the letter B.  Mrs. Book taught Gabriel to use this single sign with her and other teachers if he ever needed a “break.”  B is for Break.

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For some reason, I latched onto this idea (thinking it was brilliant in its simplicity) and I have both taught and used this sign hundreds of times in the past eight years – both personally and professionally.

I thought the B sign was a quiet, inconspicuous way for students to let me or the classroom teacher know if they were feeling overwhelmed and needed to excuse themselves from the classroom.  All they would have to do is catch my or the teacher’s eyes, hold this sign up close to their chest (no need to do the full on arm extension high in the air and attract other students’ attention) and then we could slowly and quietly nod our heads “yes,” and they could get up and leave the classroom.  They could go get a drink, walk around outside, literally run a lap around the building if they had too much energy (very common for kiddos with ADHD), do WHATEVER they needed to do to clear their heads, and then they could come back to class and be able to get back on task.

In the Learning Support world (well, truth be told, in the whole Education world), breaks (often called “brain breaks”) are an absolute necessity.  They should be taken freely and often, with ZERO guilt attached.

It’s the “Work Smarter Not Harder” mentality.  If you have a student diagnosed with ADHD and he tells you he studied five STRAIGHT hours for a test last night (true story), I believe the best reply to him would be, “Amazing effort!  However, let me help you with how to meet your individual learning needs in studying for your next test.  Not only did you study too long, you didn’t give yourself enough breaks.”

Our brains canNOT sustain good attention like that for that long, and especially kiddos with brain differences such as Autism or ADHD.  If you look at ANY peer-reviewed literature on attention and memory, you will see that after maybe 10-15 minutes, attention drops significantly and never recovers UNTIL you take a break and come back (see diagram).Screen Shot 2018-04-01 at 5.28.44 AM

So, give yourself and your students (and your own children) breaks!  More does not always equal better! 🙂

AND, along these same lines, I recently took my own advice, and took maybe the most significant “break” of my life.  In mid-March, I made the decision to take two weeks of unpaid leave and fly home, by myself, to Oklahoma.

In a nutshell, a recent and highly coincidental chain of events led me into a “crisis of conscience….(otherwise known as a Mid-Life Crisis – so says our counselor, Paul…  And Daniel & I believe and heed every word that man says).

The main questions that hit me were….

  • Am I really a good person?  Wife?  Mother?  Daughter?  Teacher?  Friend?
  • How long should I (or anyone) allow past mistakes to define who I am?
  • How much guilt should I allow myself to feel for not doing more for my children with Autism?
  • What can I do at this point in my life to improve who I am, and in turn, the lives of those around me, particularly my family?

One of the main things that threw me into this frame of mind was the impending surgery of my beautiful mother; the woman who has been my “rock,” forever.  I hadn’t seen her in nearly two years; before that, I went four years without seeing her, as well as my sweet Dad.

Living abroad becomes a way of life, and you get used (maybe even calloused) to not talking to or seeing members of your family for months, and sometimes, years on end.

And it hit me that this is NOT OK..  Family should equal time.  If you love someone, you need to spend time with them – as much time as possible.

TIME

And with the prospect of my mother going through health issues, combined with the overwhelming guilt of not doing enough for my children, combined with Daniel and his recent, out of NOwhere diabetes diagnosis, combined with some other miscellaneous personal issues…  -It all just put me over the top.

It’s like I hit a metaphorical wall; or a large 2X4 to the side of the head – and I couldn’t just get back up, brush myself off, collect my thoughts, and move forward as I usually do.

I needed something serious.  Something more than a personal day, or even a weekend away.  AND I needed to go see my family, now.

So the next morning, I talked to my Admin, and they could all clearly see that I was drowning.  There were no questions or second-guesses on their part; just love and support.  And I will never be able to thank them enough for allowing me the opportunity to take this break.

12 hours later, I was kissing my husband and my children Goodbye, and I was on a plane – with ZERO guilt attached.

When taking breaks, it’s important to do something that you enjoy, or something that relaxes you – and for some reason, on this break, I needed to DRIVE.  (I’ve no doubt that living in Saudi had something to do with that….. ;-) AND, I knew that as much as I needed to be with family, I would also need some time alone.  So I built two, very long road trips into this break.  I knew that driving alone would help relax me and clear my mind – so I flew into Chicago, rented myself an SUV, and first drove two hours over to Wisconsin to visit Daniel’s family.

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I cannot describe what amazing soul food it was to see them again (as the last time I saw them was at Daniel’s grandmother’s funeral in March 2015).  Daniel’s family IS my family (after 19 years together, understandably so…) and even though I wasn’t in Wisconsin long, I can’t express how wonderful it was to spend some time with them – and we also worked out ways and plans to keep in closer contact in the future.

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Then, high on Starbucks, I hopped in the car and drove 13 hours to Oklahoma, happily blasting the stereo (in a way I can’t with kids in the car), and alternating between the 70s, 80s, and 90s Sirius radio stations (which would otherwise drive Daniel crazy), while absolutely soaking up the beauty of my homeland.

And I realized, while driving, that I couldn’t even remember the last time I was totally and completely ALONE.

Part of the benefits of taking a break is having time to clear your head; creating some empty space that wouldn’t otherwise be there, and then allowing it to fill up with whatever thoughts are necessary to help you heal.

And it wasn’t until I got away and on my own that I realized how I am truly, never alone.  (Not that this is necessarily a bad thing…) but when you need to think, I mean, REALLY think and reflect, alone is good.  And the amount of solitude I experienced during this two-week break (even with spending a good amount of the time with my family) was more than I have experienced in, well, at least 19 years.

I had 10 days in Oklahoma, and I soaked it up like a sponge.  I had time.  I reconnected with my parents, my grandparents, my uncle, my childhood home, my childhood best friend, my high school, my university town, and my hometown in general.  I also changed my diet, stopped drinking alcohol, and made the life-long decision to fill my body and mind with nothing but pure, healthy substances.  To date, I have lost 22 pounds, and am still losing.

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And in the end, this break was the best thing I could have ever done for myself.  It did exactly what I needed it to do.

I established an inner peace that had not been there before, and found some tentative answers to the questions I had posed to myself before the break:

Am I really a good person?  Wife?  Mother?  Daughter?  Teacher?  Friend?

  • Yes, I am.  Am I perfect?  NO.  Far from it.  But in spite of all my past mistakes, my heart was, and still IS, in the right place.  My mission as a person is to help others, do no harm, and live by the golden rule.  As long as this remains true, I will believe I am a good person. 

How long should I (or anyone) allow past mistakes to define who I am?

  • This is done.  If I (or anyone) is truly sorry for their past mistakes and have taken every step  necessary to change and move forward in a good and positive way, I will not feel any further guilt for those mistakes – and in no way do they define who I am.

How much guilt should I allow myself to feel for not doing more for my children with Autism?

  • None, but I need help with this one.  As long as my husband, our counselor and I set realistic expectations for what needs to be done for our children and I do those things to the very best of my ability, I will feel zero guilt.

What can I do at this point in my life to improve who I am, and in turn, the lives of those around me, particularly my family?

  • A million things – but it all goes back to time. 

Dedicate time to improving myself, and spend time (quality time) with the ones I love..  Following Paul’s advice, Daniel and I have vastly improved our marriage and the closeness with our children by almost becoming scripted with the time we spend together (which has felt a bit unnatural, but can’t argue with it because it’s working..).  Daniel & I now spend as much time as we can together at school, and when we get home, we try to set a purpose and a goal for the time we spend together as a family (i.e. playing board games, improving reading, role playing to practice social skills, etc.).  And we have started to carefully schedule our weekends to ensure that we make time to keep in closer contact with our family back home.

  • Second, but no less important than time, is feeling and expressing gratitude.

I found that leaving my immediate surroundings and taking a break also helped me appreciate what I have – and not take anything for granted.  For instance, I never knew how badly I could miss Daniel & our boys.  This was the longest I had ever been away from any of them.  Absence did indeed make the heart grow fonder.

And by extension, this break created more gratitude in me than I ever believed possible.  Gratitude for absolutely everything: food, shelter, air conditioning (especially in Saudi!), my health, my husband, (my husband’s health…), my children, (my children’s health), my desk, the computer I’m typing this on, you get the point… Paul has also been driving this point home with both of us lately; he always talks about how people focus so much on what they don’t have vs. what they DO have, and he’s absolutely right.

So take breaks.  Make time for what’s important.  And be grateful for everything (and everyone) you have.

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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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