Six Years Away…

2023.

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

It’s ONLY six years away.

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

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

2023 is soooo far away.”

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

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

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

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

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

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

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

What will Gabriel DO when he graduates?

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

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

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

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

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

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

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

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

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

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

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

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

Screen Shot 2017-11-17 at 8.31.37 PM

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

Screen Shot 2017-11-17 at 8.34.07 PM

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

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

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

Screen Shot 2017-11-17 at 8.32.49 PM

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

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

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

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

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

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

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

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

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

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

He’s scared, though.

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

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

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

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

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

Screen Shot 2017-11-17 at 9.56.59 PM

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

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

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

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

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

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

Screen Shot 2017-11-17 at 10.02.39 PM

 

How Autism Could Save our Sons’ Lives

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

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

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

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

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

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

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

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

Us: “Um, no. Should he have?”

Doc: “Do you have an Epi-pen??!!”

Us: “Um, what’s an Epi-pen?”

Screen Shot 2017-07-25 at 10.14.35 PM

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

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

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

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

But very quickly, back to that despicable pediatrician.

ARE YOU KIDDING ME?!

Keep him away from peanuts.”

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

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

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

Ok, soapbox over.

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

So WHERE did these allergies come from?!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

References

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

 

 

Accepting Differences

Check out Samuel.  Yep, the one on the right – striking the yoga pose – while he’s supposed to be in position with his classmates for a song, during his recent spring PK3 concert.

Geez.  Such a perfectly symbolic picture for my life as a mom with Autistic children.

And I think that 10 years ago, sitting front row at my child’s concert and watching my child do this?  It probably would’ve mortified me.  

(Oh wait, it did.  Gabriel did things just like this.  So did Noah.)

And even 5 years ago, I think I would’ve still been pretty embarrassed.

(Yes, I was...)

I used to be very shallow and insecure (probably still am, but I hope not….) but I grew up caring very deeply about what others thought, and had an overwhelming desire to conform to what I thought society expected of me.

I’ve been working on shedding this mentality for a very long time, and I’m ecstatic to say – that on the day of Samuel’s concert – maybe I’ve finally grown out of it.

I walked into Samuel’s classroom that day knowing full well that he’d stick out.  I knew that he’d be bouncing off the walls, and not doing the same moves as the other kids.  

And he performed (or rather, didn’t perform) exactly as I expected.

He was all over the place.  Jumping when they were standing.  Standing when they were jumping.  Silent when they were singing.  Singing when they were silent.  It was like he was intentionally doing everything the opposite of what he was supposed to do.

And for the first time ever, this happened:

I laughed, and laughed, and laughed some more.  I gave him a thumbs up.  I shook my head, took a deep breath, shrugged it off when his shadow teacher shot me an “I’m so sorry!” look, and then took pictures and videos of everything so I could remember it forever.

I wholeheartedly embraced his cute, crazy differences!

It was an a-MAZing, liberating feeling.  

And it came out of the blue.  It surprised me.  I couldn’t believe how OK I was with what was happening.

And I walked out of there happy, and grateful, and honestly, more peaceful than I’ve felt in a long time.

So afterwards, I really reflected.  What made this experience so different from all of my prior experiences with the boys’ very public displays of their differences?  

Experiences such as when Gabriel was expected to walk across a stage for his KG graduation and instead threw himself to the floor in a screaming tantrum?  

Screen Shot 2017-06-02 at 10.16.52 PM

Experiences such as when Noah just stood there like an obvious statue when the entire 1st grade class was smiling, singing, and waving their arms in song around him?

Or, when Noah and I are supposed to be decorating cupcakes with his classmates and parents, and he decides to dump an entire container of sprinkles on top and then proceeds to try and inhale them with a straw?

IMG_2160

OR, when Samuel is perfectly fine, but the second he sets foot on the PK playground, he decides to throw his toys, then when I sternly tell him to pick them up, instead he throws himself to the ground and just lies there while kids are stepping over him, trying to play?

I’ve had m-a-n-y such experiences – and most of which, in the presence of parents and teachers (most of whom are my colleagues) – who sometimes shoot me judgmental looks of pity, disapproval (or both), or embarrassed smiles, OR, who are so embarrassed for me that they look away or politely flee the scene.

And yep, this used to really bother me.  

Not only the awkwardness of this happening in front of other people, but just the repetitiveness of experiencing difference.

I would think, “They are SO different than other kids!  EVERYTHING they do is different.

I’M SO !@#$%! TIRED OF THEM BEING SO DIFFERENT!!!!!!!!!

And I don’t know – maybe it’s age, maturity, tired of caring, and/or accepting the inevitable – but I think I’m finally in a place where I can let it roll off.

There is no cure for Autism.  They will always have it.  They will ALWAYS be different.

Might as well soak it up.

It’s not that I’ve lowered my expectations for what I’m expecting from my children.  I don’t want to say that.  I think I’ve just altered my expectations.

I’ve stopped expecting them – all three of them – to be the same as other kids.  

And, I’ve started anticipating and expecting the differences.  In some cases, even looking forward to them.

And as I said, it has given me peace.  A certain peace that I don’t think I’ve felt since before we noticed that Gabriel wasn’t talking.

I’m not on the verge of tears anymore when I see Gabriel or Noah wandering by themselves at lunch, as was the case for the last few years, or when I see how Samuel is the only student in an entire sea of children who is wearing big goofy red earphones during an assembly because of his sensitivity to sound.

IMG_3723

And it’s not that I don’t still feel a small amount of emptiness when I see them being ostracised or somehow singled out.  

I don’t think this feeling will ever go away completely.

Autism is still not a very welcomed guest in our family, but it’s not the mean, hateful intruder that I once perceived it to be.

And I know that if I can’t accept the fact that they will act or behave differently in many of life’s situations – then I’ve got a whole lot of emotional pain ahead of me – pain that might not be necessary – if I can just channel that same mentality as I experienced during Samuel’s concert.

And in the grand scheme, I should never forget how blessed I am to have these precious, little differences in my life.  I’m honestly ashamed for ever having felt embarrassed by them, or sorry for them (or for myself) that they can’t completely conform to society’s standards.

Seriously, shame on me.  😦

But I’m human and flawed, so I’ll keep praying and trying, and will never give up on them, or myself, or our family.

So, OK Autism.  Bring on your differences.  I think I’m finally ready for you.

 

Travel and Autism – update

What a difference.  Amazing, unbelievable, MAJOR difference.

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

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

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

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

He was H-A-P-P-Y.  

He didn’t get sick once.

He didn’t ask to go home once.

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

It was night and day from our Egypt trip.

Pleeeeease let me tell you what we did! 🙂

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

Screen Shot 2017-04-08 at 11.43.02 PM

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

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

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

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

It worked beautifully.

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

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

Screen Shot 2017-04-09 at 12.10.28 AMScreen Shot 2017-04-09 at 12.10.38 AM

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

Screen Shot 2017-04-08 at 11.56.35 PMScreen Shot 2017-04-08 at 11.56.57 PMScreen Shot 2017-04-08 at 11.57.05 PMScreen Shot 2017-04-08 at 11.57.14 PMScreen Shot 2017-04-08 at 11.57.36 PM

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

Screen Shot 2017-04-09 at 12.16.19 AMScreen Shot 2017-04-09 at 12.16.29 AM
I then reminded him that he has been on many planes, again, trying to reassure him that this experience is not entirely new because he has done many of these things before.

Screen Shot 2017-04-09 at 12.38.50 AM

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

Screen Shot 2017-04-09 at 12.39.18 AM

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

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

Screen Shot 2017-04-09 at 12.39.29 AM

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

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

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

Screen Shot 2017-05-16 at 3.06.16 PM

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

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

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

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

A Special Needs Mom’s Rant: Inside Out Style

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

Joy, Fear, Anger / Disgust, and Sadness.

I’ve got them all this week.

Let’s start out nice.

Screen Shot 2017-03-22 at 6.54.39 PM

 

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

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

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

For one, Samuel’s speech is exploding.

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

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

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

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

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

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

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

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

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

“Mommy, Daddy on airplane? Sleep here?”

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

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

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

And, Gabriel is rocking the trumpet.

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

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

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

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

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

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

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

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

Because I know it won’t last.

Screen Shot 2017-03-22 at 6.55.47 PM

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

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

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

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

And I don’t mean that as a cliche.

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

THAT kind of half-empty just sucks.

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

Screen Shot 2017-03-22 at 7.05.44 PM

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

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

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

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

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

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

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

Screen Shot 2017-03-22 at 7.13.26 PM

So, yeah.  This is life.

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

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

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

But I suppose it’s all connected.

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

But I hope it’s for the better.

Screen Shot 2017-03-22 at 7.33.05 PM

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

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

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

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

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

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

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

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

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

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

Thank you for listening.

 

 

Travel and Autism

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

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

And, our sweet little Noah was terrified.

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

And truth be told, I share this fear.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He is such a little rockstar.  🙂

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

img_2482

Indeed you are, my little love.

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

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

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

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

Me: “Yes, baby, tomorrow we go home.”

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

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

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

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

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

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

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

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

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

One last thought.

(Classic soapbox moment ahead….)

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

With all due respect, we completely disagree.

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

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

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

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

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

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

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

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

screen-shot-2017-03-03-at-7-03-33-pm

Playing the Autism Waiting Game

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

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

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

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

Gabriel learned to ride a bike.

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

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

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

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

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

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

Because milestones are important to parents.

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

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

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

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

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

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

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

Defense mechanism, I get it.

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

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

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

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

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

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

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

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

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

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

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

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

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

Best sounds I’d ever heard.

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

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

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

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

screen-shot-2017-01-26-at-11-04-37-am

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

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

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

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

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

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

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

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

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

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

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

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