Can We Choose Our Emotions?

I don’t think anything on Earth makes me more furious than when someone tries to hurt someone else – and when I say “hurt,” I mean any kind of hurt – mentally, emotionally, physically, etc.

When I detect anything like this happening, not only to me but to anyone around me (and especially to anyone in my family), I usually have no filter.  I get extremely angry, incensed, furious, irate, enter synonym here... that my adrenaline spikes to the point I shake and, well, yeah, I have had an extremely hard time controlling my emotions in the past when it came to this topic.

I guess I fail to understand why someone would intentionally, maliciouslyattempt to inflict emotional / mental / physical pain on another person – especially if that person has done nothing to deserve it.

I know and get all the reasons why people become malicious – jealousy, insecurities, etc. to the point they feel the need to do this in a feeble attempt to make themselves feel better – but damn, please, just OWN whatever issues you have, focus your attention inwards, and do whatever you need to do to Heal Thyself – WITHOUT trying to take others down with you.

Anyways, rant over….

So Paul, our Counselor/Life Guru 🙂 has been talking with me & Daniel lately about how people choose how they feel.

If they’re angry, they’re making a conscious choice to be angry.  Same with sad.  Same with happy.  Same with any emotion.

So if one is making a choice to feel a certain way, alternatively, they can then make the choice to NOT feel that way.

This is called emotional regulation, and for the longest time, I fought him on this idea.  I didn’t agree at ALL…..

After all, if someone intentionally tries to hurt you or your family, how can you NOT be angry with them?  Or at the very least, irritated?

If someone close to you dies, how can you not be sad?

How can you not be permanently bitter / sad / frustrated if you constantly see your children sitting by themselves at lunch?

Um, NO, this is not something you can control.

So I agree that emotions can indeed be regulated, but here is how you regulate your emotions….

  • The emotion hits you
  • You internalize and feel it
  • And THEN you regulate it – as in, you find the best way to deal with it in the healthiest way possible…

Um, so, that’s what I’ve believed for an extremely long time..  And so, that’s what I’ve preached to my colleagues, my students, and my children.

But…  As with most difficult, worthwhile ideas that take time to digest, the more I’ve thought about this and internalized this idea of controlling my emotions, and the more I’ve practiced itthe better at it I have become, and now, I think Paul might just be right.

(He always is, BTW….  It’s kind of infuriating…. 😉

So I’ve been working on this for awhile – and when I say “working on it,” there’s no set strategy other than constantly reminding myself that “I do have a choice” when I start to feel a certain way…

And not sure what happened – but maybe a month or so ago, all of a sudden, I started noticing a difference in the way I deal with my emotions.

It’s like I now observe them before they hit me, almost like a baseball of emotions moving towards me in slow motion.

I see them coming, and then I’m (usually) able to make a conscious choice about how I think I should deal with them.

And then I try to catch them, rather than be hit by them.

Then, I choose to either hold them, feel them, and be upset by them, or tell myself that these feelings are not serving me well, and then I make the conscious choice to drop them.

Here’s another way to think about it:

Screen Shot 2019-10-19 at 6.46.13 PM

And, Holy WOW, it works.  It really does.

It’s not perfect, by any means, but I can tell such a difference in how I feel, just in general.

So, once I learn a lesson, I am always very excited to share it with others – and right now I have a perfect opportunity, because Gabriel has been getting teased lately at school..

It probably seems harmless from the outside, as the teasing isn’t necessarily personal (it’s other kids constantly repeating a completely random phrase that he doesn’t like hearing) but it infuriates him to the point where he lashes out at them.

I’ve told him to ignore it, go with it, don’t get angry, CHOOSE not to let it bother him, but nope…  He can’t let it go.

And the point is: they keep doing it – because he keeps reacting to it – and they find his reaction funny…

So, they are bothering him for their own entertainment…  Maliciously.

And when things like this happen, here is my usual reaction…..

Polar Bear

However, I’m not furious.  I’m not unleashing on anyone, and/or high-tailing it to the HS office to ensure justice is swiftly served… as I probably would’ve done a year or so ago..

Instead, I am accepting that kids tease (an annoying fact of life), and I am more focused not on my own anger, but on trying to help my confused, frustrated teenager with Autism understand that HE can choose his emotions too.

But Autism doesn’t lend itself to emotional regulation. The Obsessive Compulsive (OCD) aspect of Autism can be really strong – and he most certainly has that component; so you can’t just tell him, “Ignore it,” or “Just choose to not let it bother you.”

Does.  Not.  Work.

I need a plan; something structured; something where he can have help with:

1) understanding the emotions he is feeling, and

2) crystal-clear instructions for how to deal with them

This led me to do some online research and I found this really nice 5-Point Scale from the Autism Awareness Centre, Inc., which is meant to basically spell out what is happening and the different choices he has in terms of how he can deal with the situation.

5 Point Scale

As the website states,

“The first step in using the scale to support emotional regulation is to identify problem areas for this person.  The next step is to break the problem area into 5 parts clearly illustrating the degrees of the situation and putting this information onto a visual scale.”

Then, after going over the scale (and role playing the differences in reactions with him), I will print this out, laminate it, and he will be able to keep it in his pocket and refer to it if/when he needs it – maybe right at the moment he is dealing with this issue, or maybe immediately after.

The idea is to provide him with a tool that reminds him of coping techniques – right then and there – so he will be more likely to remember them and use them – even if/when he is angry and flustered.

This also helps him rank where he is in terms of his reactions (from 5-1) and so we can use that information to help him plan for the next time.

If the first time he realizes he reached a 5, and sets a goal for a 4 next time, maybe he will be more likely to react in a 4 manner – and so on down the scale.

It’s worth a shot! 🙂

So please cross your fingers for him – as well as for me & Daniel to help him with his emotional regulation.

Also, it is my sincere hope that anyone who is reading this & who might be struggling with your feelings, I pray that you consider the possibility that you can choose your emotions.  It’s a mindset, and it does not happen overnight…  I’m still actively working on it, but the progress is there.  It might work for you too. ❤️

Screen Shot 2019-10-19 at 6.47.50 PM

 

Dunn Buron, Kari. “The 5-Point Scale and Emotional Regulation.” Autism Awareness, 15 Oct. 2015, autismawarenesscentre.com/5-point-scale-emotional-regulation/.

When an Autism Mom Needs Hugs…

SQU-eeeeeeeeeeeeeeeee-ZE!!!!!!”

–This is what I lovingly order Gabriel to do, every single time I hug him.

(Actually, it’s more of a loud beg than an order.) 

Gabriel gives what I call “shell” hugs.  His arms surround me, but barely touch me.

Meanwhile, I’m squeezing the stuffing out of him and soaking up every milli-second of it, because I know it won’t last.

Poor kid…   He got stuck with a Mommy who grew up in a very touchy-feely family and is always craving a hug. 🙂  I have a Mother who gives multiple, unsolicited, amazing MAMA-BEAR hugs and who is never the first one to let go, so I suppose hugs are in my DNA and I know no different.

Screen Shot 2019-07-13 at 2.41.07 AM

This is not to say that Gabriel doesn’t want to hug me (or anyone else), but with Autism usually comes loads of different sensory issues, and one of his is he doesn’t particularly like to be touched.  Any of his former/current teachers will back me up on this – there have been many a time we have all tried to get him to give high fives and he absolutely won’t have it.  He prefers to engage in the less, sensory-invasive greeting of a gentle fist-bump.  And he refuses to wrestle, HATES to be tickled, and in general, guards his personal space with a vengeance.

This is completely his right, and on the one hand I’m proud of him for being clear about his personal boundaries.  But on the other hand, I desperately need him to hug me.

He will do it though – because he has a such a sweet heart and I think he knows I need it.  Now that he is so much taller than I am, my strategy is to sneak in, attack the body, and clutch on to him before he knows what’s happening.  The response is always the same….  He sweetly (but reluctantly) cradles me, and I know full well he’s totally tolerating me and patiently waiting for me to back off.

Then I yell my usual, “Squeeze!” and he exasperatingly replies, “OKAY!” and his arms move in maybe 1 mm…..  And then…., I finally back off and remind him of how much I love him, and he gives me a goofy grin and says something like, “Yeah, I know….” and then quickly retreats and vanishes before I can do it again.

Screen Shot 2018-12-05 at 2.35.01 PM

The last time I remember him giving me a hug – a REAL hug I could feel in my bones – was in 2009 when he was six.  We were in Oklahoma City and went on a Ferris Wheel together – and I think it was more than he bargained for because when we started moving up, he became scared.  He latched on to me and would not let me go, and I remember how wonderful it felt.  I never wanted that ride to end.  I did feel bad that he was scared, but at the same time I absolutely savored that five-minute bear hug from my sweet baby.  It fed my soul to the point that I still remember it, 10 years later.

I consider myself very lucky though.  Very lucky, as Special Needs Mommies go.  Many kiddos with Autism will not let you hug, or even really touch them – at ALL.  Again, it’s not necessarily that they don’t want touch – but in some cases, they absolutely can’t handle it.  The brain and nervous system have trouble processing, or integrating sensory stimulus – to the point where a light touch to an arm could actually feel like a slap.

This condition is called Sensory Processing Disorder (SPD), which is:

a neurophysiological condition in which sensory input – either from the environment or from one’s body – is poorly detected, or interpreted and (or) to which atypical responses are observed 

From autismawarenesscentre.com/does-my-child-have-sensory-processing-disorder/

For a child with SPD or SPD-symptoms, processing the feelings of hot or cold, fatigue, hunger, lights, smells, sounds and tastes can be challenging and overwhelming.

How else does this affect our boys, beyond touch?

SOUNDS.  This is one reason why all three of our boys often plug their ears up and/or need to wear noise-cancelling headphones during school assemblies and/or at movie theaters. What may sound somewhat loud to most of us might actually sound DEAFENING to them.

IMG_3723

TASTES: This is also why all of our boys are such picky eaters and have specific tastes…  Gabriel prefer softer, sweeter foods and would solely subsist on ice cream if we would allow it.  Noah leans more towards salty and crunchy and his drugs (er, foods 🙂 ) of choice are french fries, Nacho Cheese Doritos and Captain Crunch cereal.

screen shot 2019-01-07 at 11.13.05 pm

Samuel is a little more adventurous will cross sweet/salty with little issues – but with Gabriel and Noah, when it comes to food, the sensory lines are very clear and extremely difficult for them to cross.  If/when we attempt to get them to try new foods, severe resistance in the form of crying, arguing, and ultimately dry heaving is usually involved.

This is when we have to remember that they are not necessarily being picky by choice – it all falls under their sensory perception abilities.  So, we try very hard not to force new foods, and if they ever want to try something new on their own, we praise the hell out of them and flood them with so much positive feedback that we hope they will become more encouraged to go for it the next time they feel like trying something new.

Not all kiddos with Autism have SPD.  SPD exists on a spectrum and can affect only one sense like hearing, or taste, or all of them, however, it is clear that Autism and symptoms of SPD can and do definitely overlap.  None of our boys have officially been diagnosed with SPD, but again, symptoms are certainly present.

So…… With all this in mind, I truly count my blessings that I can at least get “shell hugs” from Gabriel.  I have asked him countless times if my hugs “hurt” him and he has always told me, “No.”  If they did hurt him, of course I would’ve stopped asking for them – and I know I would’ve had to have found some other way to get my “love fix” from my biggest baby – but again, God bless him for being tolerant of his hug-happy Mom. 

And, I also thank God that my other two babies are absolute lover-bugs and have zero problems with my hugs.  Actually, the hugs get bigger and stronger the younger the kids go.  Noah gives extremely decent hugs and even initiates them himself (Score!!) but Samuel goes in for the attack…!  He wraps his arms and legs around me and will not let me go, and then my Mommy Hug-O-Meter flies off the charts and I am about as happy as I can get. 🙂

Screen Shot 2019-07-13 at 12.57.33 AM

My Inner Battle with Homework

Daniel and I have never been fans of homework.  Never.  We both grew up in the 80s and 90s, back when the memorization of facts was valued over conceptual understanding and critical thinking, and you earned your stripes by bragging about “how many HOURS of homework you spent doing last night!”  The ONLY thing I remember about homework was how repetitive and annoying it was and how I wished I could be doing anything else BUT.   I don’t remember ever appreciating it or feeling like it helped me.

Now as educators, we have read study after study talking about how homework results in zero academic benefits (this particular article written by Alfie Kohn, Rethinking Homework, had the greatest impact on me).  We’ve also sat through many a professional development session delivered by our Principals who have openly and vehemently discouraged the practice of homework.

We also both worked in Korea – where many children leave their schools and immediately go to after-school institutes (called hogwans) – and end up studying 16-18+ hours every day.  We worked at one of these hogwans for two years, and saw first-hand what it did to those students.  Children as young as 6 or 7 years old would come to our institute and study English until as late as 9 or 10 pm – multiple nights a week.  (AND, when they weren’t with us learning English, they were at other specialized hogwans – practicing violins or learning gymnastics).

Then they would go home, eat, sleep, and wake up to continue studying.  These kids were usually quite tired, but, God bless them – they always tried and had good attitudes about being there with us.  I’m guessing they knew no differently and had some serious mental stamina built up, even from a young age.

We also witnessed the tremendous pressure Korean high school students were under to gain entrance to a university.  They would study to the point of mental exhaustion.  In fact, high stakes testing is so “high” that they change the flight patterns of airplanes during university entrance exams so the students won’t get distracted by the sound of planes flying overhead.  (Think I’m kidding?  Read this).

NOW…  **here’s my disclaimer** we LOVE Korea (it’s Gabriel’s birthplace, after all….) and we know many, many Korean students and their parents who are kind, wonderful, well-adjusted people – and we wholeheartedly appreciate the importance that the Korean society places on education.  (Believe me, some other societies we are well acquainted with could learn a thing or two from Korea).

My point in bringing up Seoul was that we saw some extreme examples of what can happen when children and young adults are bombarded with homework and put under severe pressure to succeed academically, while being denied ample opportunities to play, explore, rest.

The above factors resonated so strongly with us that we made the decision that we would not push homework on our own children.  We opted to let their home time be their time.  After all, they just worked between 8-9 hours at school, and they need to play and let their brains rest.

We are also both acutely aware that over the years, this mentality has not made us popular amongst many of our children’s teachers.

  • We’ve had polite notes sent home to us from time to time (i.e. Please remind Gabriel to do his homework!)
  • We’ve felt the occasional cold shoulder at parent-teacher conferences when we’ve voiced our opinions about homework
  • We’ve received the sometimes-not-so-subtle comments (i.e. Noah’s reading level might be higher if he were reading his required 30 minutes a night)
  • Etc., etc.

Daniel is much better at brushing off these kinds of comments than I am.  He doesn’t give more than two-seconds thought about what others think of him.  (Wish I could do that – he’s amazing at it…)  I admit these comments have bothered me…  But any time I would second-guess myself, this was my rationale:

“Well, if they’d read what I’ve read, or if they’ve seen what I’ve seen, or, if they would realize that it’s counter-productive to just do things because that’s the way it’s always been done…..” they wouldn’t be making such a big deal about homework.  The boys are receiving upwards of 9 hours of academic instruction every day….  They’re FINE.”

I think I’ve also told myself that because of the Autism, this was all the more reason that they needed breaks at home.  Their brains are having to work harder at school than their peers – and that is a fact.

Most of their peers have built-in social skills that they don’t automatically have, so they have to use ALL of their brain power just to hold a simple conversation with someone, as well as…..

  • make/maintain eye contact
  • remember not to repeat themselves
  • listen to what others are saying
  • remember that they can’t just talk about what they want to talk about all the time
  • try not to stim during the wrong times (i.e. in class, and/or in front of others during non-socially acceptable times)

And academics in general is just harder: reading, writing, comprehending, listening, and making sense of the world around them.

All of these factors would help me dispel any guilt I felt, and I would sleep soundly at night – living in a pressure-free, no homework environment.


But recently, something happened that I couldn’t ignore, or blow off, or rationalize with thoughts of Korean culture or Alfie Kohn’s research.

Noah came up to me one night and in the sweetest voice ever, asked, “Mommy, will you pleeeeease help me with my homework?  My teachers will be happy to me!”  (Yes, he meant happy “with” me).

Of course, my heart melted.  Gabriel had never asked me that before, and so it was the very first time one of my children had ever asked me to help him with “homework.”

Well, of course, every “homework is the devil” thought completely evaporated and I heard myself almost screaming, “Yesssssss! Of courssssssse!” in my super-annoying, high-pitched Mommy voice – and I couldn’t sit down with him fast enough to start helping him with his multiplication.

  • PS – I want to be clear – this is not to say that we have never read with our boys or never took notice in what they were learning in school – quite the opposite – we’re always looking at the work that comes home, and asking the boys to tell us what they’re learning in Science, etc.  Whenever the occasional project is due, we help the boys finish whatever they need help with – but I guess what I’m saying is we never established a hard-core, “dedicated, you-will-do-nothing-else time for homework” in their evening routines, or constantly chased them to make sure they had “done their homework.”   

Meaning, “homework” was never before invited into our home as a permanent guest.

But when I sat down with Noah and we worked through his math homework together, it was wonderful.  It was so fun watching his brain work – watching his thought processes take shape – and I realized it wasn’t hurting him, or taking anything away from him – or stressing him out..  It ended up being bonding time between us, and he puffed up out of pride when he finished.

And the next morning, as we were walking into school, out of nowhere he exclaimed, “I finished my homework!”  He was happier about the completion of it than anything else, but that was enough for me.

So that night, I forced myself to ask, “Noah, do you want to do some homework?” and I was totally ready for him to say “No,” and that would’ve been the end of it.

But he happily replied, “Yes!  Let me go get my backpack!

And thus, Noah and I officially started a fun, nightly, bonding routine – that includes some thinking practice – called, “Homework.”

This was maybe two months ago, and we’re still at it!

But it’s evolved..

Now we do nightly reading and usually some math, but as an educator, it is VERY important to me that the homework is not ROTE..  I try to present whatever content he is learning in such a way that it is as authentic as possible (i.e. if we are reading about ice, we are also holding actual ice in our hands….).  It’s not always possible, but I am always asking myself: How could he use this information in real life?

And of COURSE, Not one to EVER be excluded 🙂 Samuel always jumps up and joins in, and has started bringing his backpack to me as well.

Gabriel has often done any homework he had on his own, but even HE is now interested in reading a book together.

Anyways, something has happened.  Something has changed in me.  It’s like a black cloud that I didn’t even know was there has started to evaporate.

Something has also changed in the boys.  They all seem happier – in subtle ways.  I can detect some progress in their academics, but that’s not my main focus.   I am much more concerned with confidence and independence, and Daniel and I are both seeing baby step-improvements in both areas.

So thanks to Noah, I’ve taken “homework” off my personal blacklist and realized it doesn’t have to be a death sentence – and I believe I’ve actually turned into a happier and more fulfilled Mommy because of it.

Going even deeper though, I think the boys’ Autism had more to do with this than I wanted to admit.  I think maybe, subconsciously, it’s been hard for me to consistently work with them on academics at home – because then I have to come face-to-face, every day, with the fact that they are multiple grade levels below where they should be – and that fact hurts.

In a way, maybe it’s like seeing Noah play alone every day, or see Gabriel walk around alone every day during breaks.  If I don’t go to the playground, I won’t see Noah.  If I don’t go over to the Middle School, I don’t have to see Gabriel walking alone.  –I know it’s happening, but it hurts less if I don’t see it.  Maybe I’ve talked myself out of homework all these years to save myself more pain.

It’s probably a combination of all of the above.

I also want to say that it’s very hard for me to talk about this; most of the people who will read this are also educators, and it’s like I can already smell the silent judgment….   That’s OK though – I suppose that’s what this blog is for – to share the thoughts and experiences (right or wrong) of life as a special needs parent – and potentially help provide insight or perspective for other special needs parents (and/or for those who deal with special needs parents).

At any rate, in spite of all the research and all my past experiences, I now see the potential value in this practice – as long as it is delivered in an authentic, stress-free manner that inspires inquiry and enhances understanding (vs. promoting rote memorization of mindless facts).

I am deeply grateful to our precious Noah for pushing me out of my comfort zone and helping me give these new, home-based learning experiences (aka – homework) a chance.

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.