Autism and Marriage

Daniel recently sent me this picture.

Screen Shot 2018-05-26 at 11.44.18 AM

Such truth..  I absolutely loved (love) it.  It sums up our marriage in a beautiful nutshell.

We both wholeheartedly acknowledge that this marriage has been W-O-R-K.  We have both been, well, let’s just say, “imperfect” at times…  And to be quite honest, we have each given the other person some extremely good reason(s) to give up.

But we haven’t.

Tomorrow, June 30th, is our 17th wedding anniversary, and I am BEYOND proud of us for having pushed through so many of life’s challenges together.

This is especially true when all you read about in mainstream media is the doom and gloom when it comes to US divorce rates; sometimes 50%, 60%, etc. – and that’s if people choose to get married at all.  It’s incredibly disheartening.

For us though, what is even more upsetting is when we read about the God-awful divorce rates of parents of children with special needs, which is usually quoted around 80% (or more).

One quote I found by a doctor further explains this statistic:

In the work I’ve done with children with Autism, I’ve come across many couples who quote this 80 percent divorce rate to me. They don’t know what the future holds for their child, and feel a sense of hopelessness about the future of their marriage as well – almost like getting a diagnosis of autism and a diagnosis of divorce at the same time.

I’m happy to say that Daniel & I haven’t let this statistic bother us too much, but it’s been in the backs of our minds ever since we first learned that Gabriel was autistic.  Then, adding another child with special needs, and another, we multiplied the percentages by three and eventually deducted that – statistically speaking – we simply weren’t supposed to be married.

So what do you do when the cards are stacked against you?

What CAN you do?

You can make a choice.  You can choose to look at that cup Half Full.

You find truth like in this quote, internalize it, and use it as a mantra in your lives together.

Screen Shot 2018-06-29 at 6.29.43 PM

But here’s what’s interesting.  As I was initially writing this post, personally gloating over how Daniel & I have defied these impossible odds, I became curious about from where the 80% statistic actually originated.  (If I’m going to brag about beating a statistic, I better be able to back it up, right? 😉

I figured it must have come from a fairly reputable source (such as the US Department of Health & Human Services) or the equivalent – as this statistic has been quoted numerous times in all sorts of media.

Know what?  To my happy (and shocked) surprise, this is a completely false statistic.

It is a rumor that has been erroneously quoted and spread by associations as supposedly reputable as the National Autism Association.

(If you’re curious for more detailed info, read this):

What I also found was significant research debunking this statistic, from an extremely credible source – Dr. Brian Freedman with the Kennedy Kreiger Institute in Boston.

According to Dr. Freedman,

  • “64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.” (2010)

Whaaaaat?!

So according to this, we have as good a chance of remaining married as parents of children withOUT special needs?

**happy dance occurring as I type this 🙂 **

YES!!!!

Here’s another quote to support this idea:

  • “In short, evidence for increased marital discord and divorce rates among parents of children with disabilities is weak and inconsistent. Many more parents of children with disabilities report positive effects on their marriages than report negative effects, and many others recognize that having a child with a disability has little to do with the quality or durability of their marriage relationship.” (Sobsey, 2004).

Now I’m sorry, this one is hard to swallow – I have a v-e-r-y difficult time believing that Autism has had a “positive effect” on our marriage.  Maybe. Maybe it’s made us more resilient.

It’s kept it interesting, to say the least…

But at any rate, I’ll take the new (more accurate) marriage statistic any day.  Not that it changes anything about our marriage, but at the very least, it lends a new, happier, more optimistic perspective to our family’s future together.

Speaking of perspective, Paul, our amazing counselor, gave us a fun perspective to think about recently: he said that anniversaries – while often thought of as more of reflection days – should also (and perhaps more so) be thought of as a celebration of everything that is yet to come (much like New Year’s Day – complete with setting resolutions for the year ahead).

And so we have planned our anniversary to do just this – to celebrate (along with our precious children) our many memories together, and to spend some time designing what we would like our family’s future to look like.

So here’s to you, Daniel, and to our future.

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

PS – We started the celebration early today.  Anyone that knows Daniel knows how incredibly sarcastic he is (a classic reason why I love him), and one of the cornerstones of our marriage is we are constantly making fun of each other…  (i.e. Ask him to say the word “socks” and try and keep a straight face..  His Wisconsin accent comes SCREAMING through… ;-)  So, we took turns trying to find the most sarcastic message possible to give one another for our anniversary.  I found three that I thought were great and couldn’t decide which one I liked best, so here they all are. (If you feel the need, let me know your opinion!)

Screen Shot 2018-06-29 at 8.37.53 PM

Screen Shot 2018-06-29 at 8.22.46 PM

Screen Shot 2018-06-29 at 6.08.56 PM

And this was the one he gave to me…

Screen Shot 2018-06-29 at 9.10.53 PM

 

https://www.kennedykrieger.org/overview/news/80-percent-autism-divorce-rate-debunked-first-its-kind-scientific-study

Sobsey, D. (2004). Marital stability and marital satisfaction in families of children with disabilities: Chicken or egg?. Developmental Disabilities Bulletin, 32(1), 62-83. Full text available at http://eric.ed.gov/ERICDocs/data/ericdocs2sql/content_storage_01/0000019b/80/44/c2/a5.pdf

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.

IMG_3723

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.

IMG_6561

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.

Screen Shot 2018-03-21 at 8.51.07 PM

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.

IMG_4062

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.

IMG_4077 3

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.

Screen Shot 2018-05-12 at 12.50.40 PM

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.

Screen Shot 2018-05-12 at 12.37.27 PM

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.

 

 

 

 

 

 

Six Years Away…

2023.

This year may seem a long time away, but it’s not – not if you are a parent of a child with Autism who is going to graduate from High School in this year.

It’s ONLY six years away.

At AISJ, students have their graduation year as part of their e-mail address, so I’ve been looking at Gabriel’s e-mail (Dotterweich.G.23@aisj.edu.sa) ever since he was in 1st grade.

Usually when I would see it, I would smile and shake my head and think,

2023 is soooo far away.”

But it’s not. And it never really hit me until this year.

I think what’s different now is the fact that two of my students (who I’ve worked with in Learning Support since I arrived in Jeddah in 2011) are graduating this June.

I call them “my babies,” because they were just entering 6th grade when I met them; and they were both so short, and so tiny, and fresh out of Elementary School, and sooooo very precious and innocent.

(They are STILL precious and innocent, don’t get me wrong! 😉

But, NOW they both tower over me in height, and are wearing Senior jackets, and…. yeah.  They’re full-on men now, not the “babies” I inherited when I arrived.  I’ve told them both that I am going to lose it at their graduation this year (lose it meaning “cry, hard, probably uncontrollably”), because I’ve never known AISJ without them, and I truly consider them family.

Anyways, this year, THE main topic of conversation with them has been what they are going to do next year when they leave.

And I can never have this conversation without ending up thinking about my own boys – especially Gabriel – since he is the oldest and closest to graduation.

What will Gabriel DO when he graduates?

  • Where is he going to live?
  • HOW is going to live?
  • Will he even be independent enough to live on his own?

A four-year university will probably not be an option, at least not at first.

This is pretty much a “given,” since he is on a modified curriculum – meaning he attends 7th grade classes but we simplify the content and allow him to access it on his reading/writing/comprehension level, which is around 4th/5th grade.

It would take several more years of high school beyond his Senior year for him to be able to access Freshman university level content – but I highly doubt he would be too excited about extending high school for a few more years.

I have to say though, that I am deeply encouraged by how many US and European universities are creating programs for students with Autism, so who knows…?!

But, even he if was to enroll in some type of university program, would he be able to survive on his own?

  • Drive?
  • Pay bills?
  • Cook food (or even buy food?)
  • Use an ATM?
  • Not burn the house down?

My optimistic prediction: Yes, in six years, he will be able to live independently.

The thing about Gabriel is, he can be incredibly responsible and independent when he wants to be (meaning, if there’s something in it for him), meaning, a reward.

It’s a-MAZing how quickly he will move, or how hard he will work on a non-preferred task – IF he knows he’s going to get something he wants in return.

So, I created a behavior system for him (which I call a “Responsibility Chart, see below”) that gives him points for doing things he should do, and when he collects enough points, he can “spend” them on things like Xbox games, renting or buying movies on iTunes, etc.  This is essentially an allowance system, without handing over actual money.

It is Gabriel’s responsibility to log on every day and document his points for the tasks he has completed.

Screen Shot 2017-11-17 at 8.31.37 PM

Many of these tasks are super simple and deal with hygiene, and I have to say that for the most part, he is pretty good about taking care of his hygiene needs.

Screen Shot 2017-11-17 at 8.34.07 PM

BUT, then he also has tasks such as homework, chores, trumpet practice, etc., – not as preferred…

So, to incentivize the more important things (or the tasks which take longer or take more effort (such as reading for 20 minutes every night), he receives more points.

And, as all parents know, it’s necessary for children to pay consequences for poor choices in behavior, so it is also possible for him to become grounded and/or to lose points.

Screen Shot 2017-11-17 at 8.32.49 PM

AND, I realize there are people/parents who don’t believe in giving kids rewards.

Some people view rewards as “bribes,” and think that kids should be intrinsically motivated to do such things as brush their teeth, use deodorant, do their homework, etc…

  • You want to have clean teeth?  Brush ’em!
  • Want to smell nice?  Shower & deodorant, please….
  • Want to learn?  Do your own research!

Common sense?  Of course. To a 40-year-old, yes, but not necessarily to a 13-year-old (with or without Autism...)

13-year-olds would much rather play their XBox for 8 straight hours and smell like a locker room than waste 15 minutes of that precious time taking a shower.

To those who don’t believe in giving rewards, I say, if you think about it, there are very few things in life where people do not expect to be extrinsically rewarded in some sort of way, no matter their age.

I teach because I love it.  I am highly, intrinsically motivated to go to school every day and collaborate with my colleagues, in order to help improve the lives of our students.  HOWEVER, you better believe that I expect to be paid for what I do (as does every other teacher I’ve ever known).  Payment is my extrinsic reward.

So, of course, Gabriel’s points won’t last forever, and after awhile, I intend to make him work harder or longer for the points, until he becomes mostly intrinsically motivated to take a shower or do his homework (or at least, that’s the plan...).

And, beyond the points, I’m proud to say that Gabriel can already do many responsible and independent tasks on his own!

He can cook!  He boils his own chicken, washes his own grapes, blends his own chocolate milkshakes, washes dishes, helps his little brothers pour their bowls of cereal, rides the bus home alone with Noah on our early-release school days, has his own phone, carries house keys and lets himself into our house, etc., etc.

He’s scared, though.

Any time we talk about the future, you can see the fear in his eyes.  He’s even said some really insightful things like:

  • “I don’t know how to make money.”
  • “I don’t know how to pay for things.”
  • “I don’t know how to travel on airplanes by myself.”

And I appreciate his honesty, and admire him for it.

I always reassure him that we will teach him (and we ARE teaching him; more about that in a future blog post); but we make sure he knows that he will never be alone if he doesn’t want to be.  He will always be welcomed to stay and live with us, but I really don’t think he wants that.

His current obsession is to live in London, and we visited several Hard Rock Cafe restaurants this past summer in Asia (which he LOVED), so his current dream is to go be a waiter at the Hard Rock Cafe in London.

Screen Shot 2017-11-17 at 9.56.59 PM

*I can’t lie; I have slightly higher aspirations for him than a waiter – and I don’t think he understands how SOCIAL a waiter has to be in dealing with the general public… (this is coming from someone who waited on thousands of tables all throughout her HS and university career….)

I’m grateful I have six years to help him understand that.

But I’ll tell you what – I believe the very definition of happiness is being independent.

Free and able to do what you want; live where you want, live how you want.

So, my love, if you want to be a waiter in 2023, we have six years to make it happen.

Your Daddy and I will do everything in our power to help you gain the skills and knowledge you will need to succeed on your own, and to become the best damn waiter in London.

Screen Shot 2017-11-17 at 10.02.39 PM

 

How Autism Could Save our Sons’ Lives

In November 2004, Gabriel was nine months old, and we were still more than two years away from learning about his Autism diagnosis.  But we learned something else about our little boy’s health that was equally as concerning (sometimes more so) and, quite frankly, terrifies me every day.

I was sitting on the floor at my mother-in-law’s house in Wisconsin, eating a bagel topped with honey-roasted peanut butter, and watching Gabriel perfect his crawling skills.  He saw that I was eating, so he crawled over to me and gave me a precious, “I want some, Mommy” look.  Without a second thought in my mind, I dipped the tip of my finger in the peanut butter and let him taste it.  He acted like he wanted more, so I repeated this one more time.  Then he crawled away and I continued eating.

I can’t remember who saw it first; I think it was Daniel. But what I do remember is he had turned a very bright red in about 30 seconds, and he had made fists with his hands and was repeatedly and quickly rubbing them up and down on his face. I took his top off and his entire torso had turned red, as if he has suffered a brutal sunburn. He wasn’t crying but quietly whimpering, and while I was very scared and beyond confused at what was happening, Daniel was the one to put two and two together first. He said, “Maybe he’s allergic to peanuts.”

I was in shock, but deducted that Daniel might be right. Gabriel wasn’t having trouble breathing (thank GOD), but beyond the discoloration, he had suddenly become extremely lethargic and wanted to lie down. We put him in bed, and called our pediatrician, who couldn’t see him until 2:00 PM that day (it was around 10 AM) so he told us to come in then. (I have SO much to say about this incompetent doctor’s reaction, but more on that later….)

So not knowing any better, we obeyed, gave Gabriel a lukewarm bath, and put him to bed for a nap.

We took him into the doctor at 2:00 PM and he took a quick look at Gabriel, checked vitals, and calmly announced, “Yes, he appears to be allergic to peanuts. Just make sure he doesn’t eat them.” -A quick $200 for him to tell us that.

Well, for the next few months, we did just that, until we spoke with a friend of Daniel’s from college who was also a doctor, and upon hearing our story, our friend nearly lost it.

Doc: “Didn’t that doctor order any blood tests on Gabriel to determine the severity of the allergy?”

Us: “Um, no. Should he have?”

Doc: “Do you have an Epi-pen??!!”

Us: “Um, what’s an Epi-pen?”

Screen Shot 2017-07-25 at 10.14.35 PM

Thanks to our doctor friend (who, BTW, was also the doctor friend who eventually told us that Gabriel had Autism – this guy is our family’s Angel, truly….) but he referred us to a different pediatrician (one who knew his head from his… yeah, you know) and we were quickly referred to an allergist, who conducted the appropriate tests and told us that Gabriel was not just allergic to peanuts, he was deathly allergic to them.

He said the only reason Gabriel didn’t go into anaphylactic shock (when your windpipe closes and you can’t breathe) when I gave him the peanut butter was because I gave him such a little amount.

He said his RAST levels (blood test levels) were “through the roof,” and he would need to have an Epipen near him at all times for now, and more than likely for the rest of his life.

Luckily, he also told us that the allergy was ONLY for peanuts (which is not actually a nut but a legume) so Gabriel was cleared for all other nuts. Some good news….

But very quickly, back to that despicable pediatrician.

ARE YOU KIDDING ME?!

Keep him away from peanuts.”

No tests ordered, no other advice, no other cause for concern, etc. THAT was his advice. He didn’t even bother to tell us that allergies can increase in severity over time, and that Gabriel’s life could potentially be more in danger as he grew older (which has indeed turned out to be the case).

Knowing what I know now, I wish we would have turned this guy in, sued him, exposed his incompetence in a very public way, etc.  I’d gladly do it now but we have no proof, and there’s probably some sort of statute of limitations clause against bringing legal grievances against doctors.

But, 13 years later and I am STILL on fire at this guy.  Let me just say, if you are in Janesville, Wisconsin and you are looking for a pediatrician, do your homework and thoroughly shop around – because this guy is still practicing.

Ok, soapbox over.

Reflecting, Daniel and I were as ignorant about food allergies as we were about Autism. Neither of us had prior food allergies in our families, so we knew nothing and suspected nothing, until this slapped us in the face.

So WHERE did these allergies come from?!

Same place Autism came from, I suppose. Who knows….?

However, studies have been conducted which compared the prevalence of health conditions associated with children with ASD and found that allergies, particularly food allergies, were more prevalent in children with ASD than those without (Gurney, McPheeters & Davis, 2006).

When Noah was born, not only were we on the lookout for Autism but also for the peanut allergy. It was very easy to keep peanuts out of the house and Gabriel’s daycare was on alert, so we weren’t too worried – except for one thing: we could not buy Epipens in Abu Dhabi…!  They literally did not sell them there. The incidence of food allergies was so scarce there that there wasn’t enough of a demand for them.

(Quick jump to present day: This is an issue we are still dealing with. We can’t get them in Jeddah either…). Our Wisconsin allergist told us that eastern-Asian countries such as China boil their peanuts, while western countries such as the US roast them.  When we roast them, certain proteins are brought out, and somehow, the fact that we ingest those proteins contributes to the increased incidence of peanut allergies.

Living abroad doesn’t help our case either.  Peanut allergies are not widely recognized and are largely not taken seriously, and especially here in SE Asia (where we are currently vacationing), peanuts are in EVERYTHING.  Scary..  😦

Anyways, we kept Noah away from peanuts until we could get him tested (usually done at two years old), and sadly, yes, he followed in his big brother’s footsteps as with the Autism diagnosis. Noah’s allergy levels are also dangerously high, and he too must have an Epipen near him – but his levels aren’t as high as Gabriel’s.

Thank goodness (and I’m fiercely knocking on wood as I type this) but we have thus far been successful in keeping Noah peanut-free (except for some peanut-infested birdseed we found him playing with when he was two; a quick bath and some Benadryl solved that without incident.

And just last year, we had Samuel tested – and while we were fully expecting him to follow in both of his big brothers’ footsteps, as with the Autism, God decided Samuel would be spared any food allergies.

I’ve never had happy tears flow as quickly and forcefully as they did when I learned that news.

And here is where Autism comes in, as a potentially positive thing.

Yes, Samuel has Autism, the same as his brothers, but he is NOWHERE NEAR as picky an eater as his brothers.  He’ll try anything, which makes the prospect of Samuel having a peanut allergy downright horrifying.

If a random child were to offer Samuel a peanut butter cookie, he would try it.

Same thing with Gabriel or Noah? – There’s no way would they touch it.

There are not many instances when I am thankful my sons have Autism, but if one of the symptoms of Autism is food aversions – causing kids to be picky eaters – then in this case, I am thankful for Autism.

Because here’s the paradox: although it’s probably because of the Autism that Gabriel and Noah have the peanut allergies, it might just be the Autism that ultimately helps them avoid peanuts and thus, saves their lives.

 

References

Gurney JG, McPheeters ML, Davis MM., (2006). Parental report of health conditions and health care use among children with and without autism: national survey of children’s health. Archive of Pediatric Adolescent Medicine. 160(8):825-830. doi:10.1001/archpedi.160.8.825. http://www.ncbi.nlm.nih.gov/pubmed/16894082