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.

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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.

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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.

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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.

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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. 🙂

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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.

For Noah, On your 11th Birthday Eve

My precious Noah,

Tonight as I watch you sleep (a favorite pastime of mine…  I do love watching my boys sleep….), I find myself remembering the afternoon you were born, 11 years ago tomorrow.

It was one of the best afternoons of my life, followed by one of (if not THE) scariest nights of my life.

Before we knew about your peanut allergy, or your Autism, there was almost something else – a complication that could have resulted in you having a major surgery just days after you were born.

Here’s your story.

Your birth was to be a planned C-section (because you were going to be a BIG baby, already weighing 9 lbs @ 38 weeks!), so Daddy & I were able to have a relaxing morning before heading to the hospital that day.  We dropped your big brother off at his preschool (he was only 4 years old then!) and then strolled over to Al Noor Hospital in Abu Dhabi.  We even had time to snap a quick, last pic of you inside my tummy!

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Everything went well, and you were born at 3:40 PM (which is the EXACT same minute that Gabriel was born, by the way….) and I remember hearing you cry for the first time.  I was so happy to hear your voice that I started crying, to the point where I was shaking, and I remember the Anesthesiologist looking at me shocked & wide-eyed for a second (like he thought I was convulsing), until he realized I was just being super emotional.

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They brought you to my hospital room not long after, and I finally got to hold you and snuggle for awhile.  Daddy and Gabriel came to see you, we took some new family pictures, and then your brother and Daddy went home and the nurses took you away to the nursery.

A few hours went by, and I missed you, so I rang the nurses and asked them to bring you to me – and they said they would, but then they didn’t.

I tried to be patient, but you still didn’t come.  I started ringing the nurses almost every 10 minutes to ask where you were, and each time they would come in and say you were on your way, and then they would disappear and nothing would happen.

After a couple of hours of this, I was extremely (and visibly) angry and upset with them, and one of them finally said, “The doctor is coming back to the hospital and he will talk to you.”

By this time, it was about 2:00 AM, and for the doctor to be coming BACK to the hospital?  Meaning he was coming back because of, you?

What the HELL was happening?!?!  (er, or, What the heck?!?  –You won’t read this until you’re older anyways… )

I started ringing the nurses more and asking them what was wrong, and they wouldn’t tell me anything, but things weren’t adding up.  When I was holding you earlier, you were sleeping, breathing just fine (as far as I could tell), your color was good, and I didn’t detect that anything at ALL was wrong with you.

And now, I was all alone in this hospital room and I desperately wanted to call your Daddy, but – I didn’t want to wake him up in the middle of the night and scare him until I had something to tell him other than the feeling that all nurses at this hospital were mean, and incompetent, and were definitely hiding something from me…..

So I waited, and waited.  I’m pretty sure I started crying, and the saddest feeling of dread was washing over me.  And I was getting SO angry and frustrated.

WHY wouldn’t anyone tell me what was going on?!?!

After what truly seemed like an eternity, the doctor walked in.  He was wearing normal clothes, like he had just come from home, and he looked tired like he had just woken up.  He told me that you had a very swollen stomach (which I didn’t see because you were wrapped up in a blanket when I was holding you), but also that you had been throwing up bile all evening and you weren’t passing your meconium (your first baby poop).

So they did an x-ray on you, and when he showed me the screen, it showed your sweet, tiny little frame, and maybe 40-50 little air bubbles stacked on top of each other in your stomach.  Basically, you were blocked up and nothing (no milk) was getting through your little body.

The doctor was afraid that you might have a condition called Hirschsprung’s Disease; meaning, a part of your colon would’ve been diseased, and that might be what was preventing things from moving smoothly through your body.  It wasn’t life threatening, yet, but it could turn so very quickly if you weren’t able to, well, poop.  If you would poop, this would finally let all the air bubbles out of your stomach, and then you could drink some milk without throwing it up.

It was like a bad dream.  You may have some disease I’d never heard of before, and you might have to have surgery?!  I was so very sad, but I remember thinking that at least there was something we could do, and that it truly could’ve been worse.  The doctor also said that he wasn’t ready to call the surgeon just yet, because “all surgeons usually want to cut right away,” and he wanted to give you a little more time.

Over the next two days, you stayed in the NICU, in a little incubator, with IVs in your hand and tubes draped over your precious little body.  I came to see you and held you, and admired how beautiful you were.  I wanted nothing more on Earth than for you to be OK and to take you home with us.

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And then came the time for me to leave the hospital, but we couldn’t take you home with us.  You had to stay, and we had to go home, and that wasn’t right.  You were supposed to come home with us…  We had your crib ready.  We had plastered your room with Winnie the Pooh decorations.  We even had a mile-high stack of diapers awaiting you….  There was nothing but love, comfort, cuddles and kisses waiting for you at home – but we couldn’t take you with us.  Your little tummy was still bloated and filled with bubbles, and so you had to stay at the hospital until you were able to pass everything through.

I cried when we left the hospital, and I cried when we got home.  It was one of the saddest experiences of my life.  But some good news was that the doctor said you appeared to be doing better, but they still wanted to monitor you, and he would call us if you threw up again.  That night, I prayed so hard for the phone to remain silent – for it NOT to ring, and God answered my prayer.  It didn’t ring.

The next morning, your Daddy and I went to see you at the hospital, not knowing if we were going to be able to bring you home – but when we saw your doctor and he saw us, he started smiling.  He happily told us that you had your first “poop,” and the bubbles in your tummy were gone, and that we could take you home.   I was so happy I started crying and asked the doctor if I could give him a hug and he said, “Yes,” so I practically jumped on him and gave him a HUGE hug and then skipped through the maternity ward to where they were keeping you.  We gently wrapped you up in your brand new blue baby blanket (the one with the baseballs and footballs that your Grandma Karen sent you) and we brought you home.

I spent that afternoon feeding you, kissing you, snuggling with you, taking endless amounts of pictures of you, and watching you sleep (just as I am right now).

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And here you are, 11 years later.  You have grown into such a sweet little boy with the purest heart.  Daddy and I call you our family’s “Border Collie,” which means that you are always checking on everyone to make sure they are OK.  You are the first one to let us know if someone isn’t OK – like if someone is hurt, or sad, and you’re always asking if everything is all right.  You love Doritos and Chocolate Milk.  You love your iPad. And you are really GOOD at math! 🙂

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You have blessed our lives in countless ways, my love.  Thank you for being you.  Daddy and I are so lucky to have you as our son.

Happy 11th Birthday, Noah Christian.

“Can Surgery Remove my Autism?”

Damn, kid.

Gabriel never fails to ask the really tough questions.

To provide context, he had a sore throat not too long ago, and as it didn’t seem to be going away anytime soon, we went to the doctor.

It was a new doctor, so when we went in, they asked him the standard “new patient” questions, like “Do you have any allergies, what medications are you on, etc.”

So we went through all that, and then they asked if there was any further medical information they needed to know.

I whispered to Gabriel, “Do you want to tell them about the Autism?”

This seemed to irritate him a little, but he replied to them (in a slightly exasperated tone), “YES, I have Autism.

To this, the nurse didn’t bat an eye but just smiled and said, “OK, thank you for telling us.”

(I was so grateful to her for that – the professionalism and automaticity with which she responded to him).

Then he and I went back out to the waiting room and he went quiet.  I asked him if he was OK and he quietly said, “Yes,” but I could tell he wasn’t.  I started to second-guess myself and think that maybe I shouldn’t have mentioned the Autism – but in hindsight, I’m glad I did. Medically speaking, it’s necessary for them to know; even though he’s 14, he still has a considerable speech delay that could potentially impair his ability to express himself in the future – say if he’s hurt, or on medication, but can’t tell them exactly what or why.  At least they would know.

I also think I wanted to try and normalize the Autism…  although I’m not sure what I mean by this.  I guess really normalizing it would’ve been to NOT mention it, but I do feel very strongly that the Autism is something he needs to own.  I’ve seen enough student/parent denial in my time as an educator to know that denying and/or ignoring a disability does NO good.  Trying to pretend it doesn’t exist is SO harmful and counterproductive.  Much better to hit it head on, own it, figure out how best to deal with it, and move on.

Anyways, we sat there a few minutes quiet, and then he asked, “Mom, can I have a surgery to remove the Autism from my brain?”

My heart dropped into my stomach and I immediately started praying for the right things to say.

No, honey, the Autism isn’t something that can be removed.  It’s part of you and your personality.  It’s part of what makes you the wonderful person that you are.”

He replied, “But I want to be intelligent.  And I don’t want to be different.”

And here’s where I was immediately grateful for my Special Education background, because I’ve had this conversation countless times with students in Learning Support – as for our students, it’s VERY important that we constantly convey the message that there are MANY kinds of intelligent.

Sweetheart, do you know what “intelligent” means?  It means that you are capable of doing SO many different things!”

And I rattled for at least two straight minutes…

“You can take care of yourself and help take care of our family, like always doing the dishes for our family, or boiling chicken for yourself, or fixing your little brothers a bowl of cereal!  You can keep yourself safe like remembering the house keys and always making sure our doors are locked; you can read music and play the trumpet, you can remember things that happened when you were three years old and tell stories about all places you’ve been, you can find absolutely anything you want to on the Internet faster than Daddy or I can (and that is 100% true!). LOOK at everything you can do!”

I actually said a lot more than this, but you get the point…

He seemed to ease up and acted like he felt better after my rant (or, maybe he just wanted me to shut up… 😉

But then, he gave me a shy smile and said, “Yes, but I can’t drive yet…

Oh Dear God.  So it begins…..👀

Anyways, that particular conversation ended, and I can’t necessarily claim success, but he hasn’t mentioned this again, or asked me anything remotely like this since (this happened a few weeks ago), and I do feel like he would keep asking if it were bugging him, so I’m hoping that what I said made him feel better about himself.

But the comments still come.

Random comments every so often about how he doesn’t like to be “different.”  He’s also starting to talk about girlfriends. “Mom, when will I have a girlfriend?”

And this one breaks my heart – as I’ve seen / heard this comment from some of my older students with Autism as well.

I tell him the only thing I know to say, “Gabriel, you’re so young, please don’t worry about this.  It’ll happen someday; you’ll meet someone, just like Daddy and I met each other.”

I pray I’m right; I hope he will find someone, with or without Autism, who will love him and accept him for who he is.

—His growing up is honestly tough to handle, and it’s not getting any easier.

Daniel & I have a dear friend who is a Pediatrician in Wisconsin, and he was the one who detected Gabriel’s Autism before anyone else.  He told us, way back when Gabriel was three, that the Autism would really rear its “ugly head” when Gabriel hit his teenage years.

Well, we’re here, and I’m honestly scared..  He’s so sensitive and self-conscious.  I hope we can keep finding the “right” or “semi-right” things to say or do when Gabriel hits us with these tough questions…

And to end on a lighter note (but still along the same lines), Gabriel and I were recently looking a picture of me when I was pregnant with him, and he asked me, “Mom, how did I get IN there?”

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Me screaming inside: !@#$%!”

**BIG BREATH**

“Um, well, (imagine me stuttering and stumbling over my words….) I had an egg inside of me, and, um… you grew from the egg.”

Gabriel: “So, HOW did the egg get inside of you?  Did you EAT the egg?

…….

OMG…  I can’t imagine how many shades of red my face turned while I was trying not to scream with laughter…!

My mind sort of went blank at this point, but I think I said something to the effect of, “No, sweetheart, I already had the egg inside of me.”  And I stopped right there and immediately changed the subject before he could ask me about Daddy’s role in the egg fertilizing process.

Um, yeah.  He’s at the age of questions. Tough questions.  Some questions that I would never EVER anticipate (although, to be fair, I should’ve anticipated the pregnancy question at some point….).

Such is the parenting life in general, I guess, but throw Autism into the mix and it literally turns into a Forrest Gump situation: “It’s like a box of chocolates, you never know WHAT you’re going to get.”

So please pray for me to be able to think on my feet quickly, restrain my laughter when necessary, and no matter how much a question throws me, enable me to find the words to help him realize that he is exactly the way God intended him to be, Autism and all.

Autism and Marriage

Daniel recently sent me this picture.

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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.

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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.

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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!)

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And this was the one he gave to me…

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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.

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

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

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

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

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

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

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

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

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

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

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We are praying that his wonderful progress continues. 🙂

“B is for Break”

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

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

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

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

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

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

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

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

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

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

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

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

The main questions that hit me were….

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

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

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

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

TIME

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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