Travel and Autism – update

What a difference.  Amazing, unbelievable, MAJOR difference.

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

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

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

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

He was H-A-P-P-Y.  

He didn’t get sick once.

He didn’t ask to go home once.

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

It was night and day from our Egypt trip.

Pleeeeease let me tell you what we did! 🙂

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

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

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

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

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

It worked beautifully.

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

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

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

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

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I then reminded him that he has been on many planes, again, trying to reassure him that this experience is not entirely new because he has done many of these things before.

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

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

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

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

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

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

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

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

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

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

A Special Needs Mom’s Rant: Inside Out Style

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

Joy, Fear, Anger / Disgust, and Sadness.

I’ve got them all this week.

Let’s start out nice.

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

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

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

For one, Samuel’s speech is exploding.

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

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

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

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

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

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

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

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

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

“Mommy, Daddy on airplane? Sleep here?”

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

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

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

And, Gabriel is rocking the trumpet.

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

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

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

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

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

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

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

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

Because I know it won’t last.

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

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

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

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

And I don’t mean that as a cliche.

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

THAT kind of half-empty just sucks.

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

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

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

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

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

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

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

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

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So, yeah.  This is life.

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

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

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

But I suppose it’s all connected.

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

But I hope it’s for the better.

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

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

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

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

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

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

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

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

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

Thank you for listening.

 

 

Travel and Autism

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

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

And, our sweet little Noah was terrified.

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

And truth be told, I share this fear.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He is such a little rockstar.  🙂

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

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Indeed you are, my little love.

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

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

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

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

Me: “Yes, baby, tomorrow we go home.”

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

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

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

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

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

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

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

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

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

One last thought.

(Classic soapbox moment ahead….)

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

With all due respect, we completely disagree.

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

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

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

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

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

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

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

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

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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.

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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.

 

Mommy, Why did Jesus make me Autism?

Hardest question I’ve ever been asked….

About two months ago, during school, I happened to see Gabriel during one of his breaks.

He was sitting outside on some bleachers, deep in the middle of a group of boys.

This both shocked and excited me, because this was different!  He usually spends his breaks either sitting by himself on the bleachers, or just kind of wanders around by himself, killing time until the next class.   

So, as I looked closer, not only was he sitting amongst a group of boys, he was talking!  Like, in a highly animated way, as if he was telling a story.

This was A-MAZ-ing!  

I came even closer as I wanted to see exactly who he was talking to, so I could make mental notes of who the boys were who were being so nice to him and listening to whatever he had to say.

And then, my heart dropped from out of the clouds.

No one was looking at him or paying attention to him.  He was having a full-on, highly animated conversation – with himself.

This was new; I’d never seen him do this before.

And not only had I never seen him talk to himself before, I most certainly never saw him do this while sitting in the middle of a group of boys.

–Oh my sweet angel, WHAT are you doing?  Are you SO longing for a friend that you’ve created an imaginary friend?  Or, have you become so desperate for others’ attention that you’re now behaving in a manner which you believe will give you attention?  AND, you must no longer care if that attention is negative?–

I fought back tears, felt my stomach sink, and just sat there awhile and watched him.  He couldn’t see me (and I was very thankful for this) as I didn’t want him to catch me watching him while I was undoubtedly looking so heartbroken.  (I was watching from inside our Middle School teachers’ lounge – which has dark tinted windows that prevents students from seeing in.)

I carefully studied the boys sitting around him, waiting for a side look from one of them, or a comment, or any minuscule hint of bullying – which would have automatically launched me off that couch and outside to deal with it in a second – but, they all seemed to be so engrossed in their own conversations that they either didn’t notice him, OR, they were all doing an excellent job of ignoring him.

I watched for a few more painful minutes, and he finally seemed to settle down a little, and then thankfully, the bell rang and they all got up and dispersed to their classes.

I knew he had dodged a massive bullet, and I started to plan out what I was going to say to him that evening about it.

So that night, I sat him down and gently said,

Me: “Gabriel, I saw you today during one of your breaks, when you were sitting with a group of boys.  Do you remember that break?”

Gabriel: “Yes.”

Me: “It looked like you were talking to someone.  Who were you talking to?”

Gabriel: Silence

Me: “Can you tell me?”

Gabriel: Confused and afraid glance

Me: “Gabriel, were you talking to yourself?”

Gabriel: “Yes.”

Me: “Do you know why?”

Gabriel: “No.”

Me: “Gabriel, it’s OK to talk to yourself.  People do it all the time – but they do it when they’re by themselves, in private.  Like when you’re at home in your room.  But, when we’re around other people, like at school, if we have thoughts in our heads, we need to try and keep them in our heads and not let them come out of our mouths – unless we are talking to another person. “

Gabriel: Nods head, “Ok.”

*Long Pause*

Gabriel: “Mommy, maybe my Autism made me do it?”

Me: “You might be right, Gabriel, and that’s OK.  Remember we said that Autism is a brain difference?  This might be one of those differences, and again, that’s OK.  You can control this.  When you’re at home or by yourself, you can definitely talk aloud to yourself if it makes you feel better.  OK?

Gabriel: Silence, thinking.

Gabriel: “Mommy, why did Jesus make me Autism?”

Oh my God.

–I catch my breath and pray a three-second prayer for the right words–

Me: “Gabriel, Jesus loves you, and He made you in a very special way.  There’s no one in the entire world the same as you.  Jesus created you just the way you are, and He wants you to do wonderful things.

Your autism is what makes you, you.  Please remember it’s not a bad thing; it’s a difference.  And there are many ways that your Autism helps you.  You know how you can remember so many things?  So many details of all the places we’ve been and the things we’ve seen?  You know how you can remember so many of the world’s different currencies and how you know all of the different “Wonders of the World” structures and where they are?  How you can remember so many of the different flight times between all the places we’ve been?  

Your autism helps you remember all of these wonderful things, and it’s going to continue to help you learn as you get older.  What we have to do is use your autism for the good things, and control it when it wants you to do things that might actually be a little too different – like what happened today with talking to yourself.”

Long Pause

Me: “Do you understand what I’ve said?”

Gabriel: “Yes.”

Me: “Can you tell me what I just said?”  (which I have to do because any time I ask him if he understands something I’ve said, his default answer is always “Yes.”)

Gabriel: gives me a pretty good, abbreviated version, hitting the important points of how he’s special and he can remember  a lot of things, and how Jesus loves him.

I was relieved with his answer, but he still didn’t seem completely convinced.  At this point, he kept trying to leave the room, so we took a break from the conversation.

And I believe it worked, because I haven’t seen him talk to himself since.

But, in true autism fashion, Gabriel still tends to repeat questions – so I’ve had to re-answer the question, “Why did Jesus make me Autism?” probably 8-10 more times.

And every time, I try to remind him of the fact that Jesus loves him, he was created exactly the way Jesus intended, and that he can use his autism for good.

But the problem is (and I’ll never tell Gabriel/ Noah/Samuel this) that I’ve asked Jesus the same thing a million times.

Jesus, WHY did you make my children autism?

Because I hate autism.  With every fiber of my being.

I don’t want it around.  I want it out of our lives.  I don’t want to figure out how to use it for good – I just want it to disappear and stop clouding my children’s (and my students’) minds.  

And believe me, I want to believe everything I’ve said to Gabriel – that Jesus made him exactly how He intended.  But this is where I don’t understand Jesus’ reasoning.  

The negative effects resulting from autism have, by and large, outweighed the positive effects.  

So again, why????  Why our children?  And why us?

Anyways, this is my daily struggle – asking questions to which I’ll probably never know the answers.

So honestly, it’s here to stay, so why fight it, I guess?  

Just turn that fight into a fight for inclusion and acceptance, constantly try to help those with special needs improve their lives, and continuously search for new ways to use autism for the good.  

About all I can do.

Navigating the Perfect “Autism” Storm

Most people with Autism need a high level of structure and clear-cut routines.  

Familiar people, familiar places, they know what’s coming, no surprises, etc.

This makes them feel comfortable and secure, and in Autism research, there is overwhelming proof that people with Autism thrive more in every way when you place them in a very stable environment.

So sure – this is great in theory, but highly unrealistic.  

Life doesn’t work this way.

So, what do you do when you have a child with Autism who is about to go through a situation that is completely new, and potentially painful, in a strange place with strange people?

Namely, a dental surgery?

AND, couple this with the fact that Gabriel was just five years old, and had a serious receptive and expressive speech delay that allowed him to communicate like a two-year-old.

Meaning, yes, we could try and tell him what was about to happen and the reasons for it, but we wouldn’t have any guarantees that he would understand anything we were saying.  

There was no such ability to have the following conversation:

Mom: “Gabriel, you have some teeth that need to be fixed, so we’re going to take you to the hospital and they’ll put you under, they’ll fix your teeth, and then you’ll wake up and be a little groggy but you’ll be fine.”

Gabriel: “OK Mom, got it.  I’ll be fine.  Thanks.

In my dreams.

We had the makings of a perfect storm ahead of us, with the potential of a truly traumatic experience for our little boy.

While it was an outpatient procedure and he wouldn’t have to spend the night in the hospital, he was still going to have to go through a million, different tiny procedures (each of which would be difficult for him to do, and any number of these could potentially cause a meltdown):

  • Smelling the air in the hospital
    • He and many with Autism are super sensitive to any different smells
  • Waiting, and waiting, and waiting….
    • Tough for any kid but this was certain to just heighten the anxiety
    • (I had the iPad fully charged and ready to go…)
  • Putting on a surgical gown
    • He might not like the texture or feel of the gown against his skin
  • Having blood pressure taken
    • I’m sure he’ll be thinking, “Why is this thing squeezing my arm and WHY is Mom allowing it?!”
  • Mask on his face to put him under with anesthesia
    • Again, scary for any kid, but a mask on his face?  He’ll probably freak out and try to rip it off.
      • This is the same kid who screams bloody murder if someone tries to cut his hair..
  • Waking up in a strange place with strange people, in PAIN
    • In the past he’s refused to take medicine..  How will we get him to take his pain killers?

How could I prepare him for ALL of these new experiences in a nonverbal way?!?!  

How could I cushion each little blow so that he wouldn’t be completely terrified and traumatized the entire time…??

(insert deep breath here…)

Well, looking back, I truly think that God intervened, because it was right at this time that I was taking an Assistive Technology course through my Special Education MSEd program, and one thing we were studying was “Social Stories.”  

Telling stories through pictures.

Not a novel idea, to be sure, but this kind of story is highly individualized and is designed to provide the child with a very specific, play-by-play of what is going to happen.  And when you’re dealing with kids with speech delays, incorporating visuals is one of the most valuable things you can do.  

Not only do you tell them what is going to happen, they can “see” it.  It made perfect sense.  

I took the idea and  created a very simple “social story” for him, to show him a step-by-step playbook of what was about to happen, and ALSO, to show him what he had to look forward to after the surgery was over….

A PRESENT!

So Daniel and I sat down with Gabriel the day before the surgery, showed him this story (below), and very slowly – and very simply – talked our way through it, picture by picture.

Gabriel, tonight you’re going to go sleep, then wake up tomorrow, you’ll have a bath, and then we’ll go to place called a hospital.  You’ll put on a hospital gown, and lie down in a bed.  Mommy will be there and I’ll put a mask on my face, and Gabriel, you will put a mask on your face.  Then you’re going to hold Mommy’s hand, look in Mommy’s eyes, you’ll start to feel sleepy, and you will go to sleep. Then the dentist will fix your teeth.  Then you’ll wake up, and Mommy will have a present waiting for you!  Then we’ll take you home and you can sleep.

screen-shot-2016-12-02-at-12-14-58-pm

Now.  I don’t want to brag (but I admit I AM about to brag a little… 🙂

It worked.  And it worked SO well…!

Truthfully, when he saw “present,” that was it.  After that moment, he talked about nothing else.

“Present?!  Present?!  Present!!!”

Not about the anxiety of going to the hospital, or a mask on his face, or having his teeth fixed, etc.

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

So, the next morning came, and we were ready for the worst, but he gave us his best.

ZERO meltdowns.

He was happy, calm, and compliant throughout the entire day.

A pure dream.

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I brought the story with us, and showed it to him multiple times throughout the morning – just to keep it fresh in his mind – but I think I ended up being more nervous than he ever was.  

I was the one who was nervous when they asked him to put on the gown, but it went off without a hitch.  And I was the one who started crying when he was looking in my eyes and falling asleep under anesthesia.  

He was just peaceful and brave.  Pure grace.

And he woke up with the same grace with which he fell asleep.  Groggy, to be sure, but not angry, cranky or even irritable.

So yes, the present was the cherry on the top, but I still deeply believe that it helped him knowing and seeing what was going to happen, so there were no surprises.

And, he LOVED his present!  (a Wii game he’d been wanting).  

Very well-deserved, my love.

Since then, we’ve used similar-style social stories for many things, such as before we jet off for a summer vacation, but I’ve never had a social story work as well as it did for Gabriel and his dental surgery.

Highly recommended strategy for navigating the potential, perfect “Autism” storm. 🙂

screen-shot-2016-12-02-at-1-01-23-pm

Thankful for Inclusive Teachers

Tomorrow is Thanksgiving, and I am deeply thankful for many things, but something happened this past week that made me exceptionally thankful for my children’s teachers – and for ALL the wonderful teachers out there who work so hard to promote the inclusion of children with special needs.

There was a video that went viral of a teacher in West Virginia forcibly removing the microphone from a boy with Autism’s hand when it appeared it was his turn to speak in a Thanksgiving play – and thereby consequently, visibly devastating him.

(If you haven’t seen it, here is a link for reference): http://ktla.com/2016/11/21/boy-with-autism-brought-to-tears-as-teacher-snatches-mic-at-thanksgiving-play/

Needless to say, Daniel and I were both furious when we watched it. We each made simultaneous comments to the effect of, “I don’t know WHAT I’d do if I saw that happen to one of our boys,” etc.

My eternal sympathy goes out to that sweet boy (Caleb), his poor mother who had to witness it (Amanda), his family – and to every other special needs parent out there who watched it in horror.  I hope the amazing outpouring of love for him somehow makes up for that despicable situation.

Anyways, that video was the impetus for this week’s post, as I have a shining example of a polar opposite situation – a situation in which an autistic boy’s teachers believed in him and gave him an amazing opportunity to shine in a concert – when they most definitely could have placed him in the back – or even made the plausible argument that it would be too overwhelming for him to perform.

It’s like I feel the need to talk about this pure act of kindness to counteract the unintended (or intended) malice displayed in that video.

So when Noah was four years old, he was in a small concert with his class, and he did his best to stand in front of people and attempt to take part in the songs and moves, but it ended up being pretty overwhelming for him, and he cried through most of it.

(Here’s a happy picture of him before he went on stage and turned on the water works.  They performed the nursery rhyme, “Hey Diddle Diddle,” and he played “the little dog who laughed to see such sport“).

screen-shot-2016-11-23-at-7-14-25-pm

So the following year, Noah was five, only speaking maybe 20 words, stimming (shaking) all the time, and very, very shy.

The concert came around again, and Daniel and I were hopeful that he would be able to perform as well (if not better) than the year before.

Baby, just stand up with the other kids, try your best to sing, (and if no singing, just try and mouth some of the words…) maybe participate in a couple of movements with the other kids, and a little less crying would be the BEST bonus!  🙂

So Daniel and I show up to his concert, and watch as all the other PK4 (4 and 5 year olds) classes sing their songs, do their dances, etc.  Precious as always.

Then Noah’s class comes out in front.

Daniel and I slink our way up through the crowd to try and see better. As we’re walking up, we see all the children in Noah’s class nicely lined up in a straight line parallel to the crowd, quiet and ready to perform, some sitting in a row of chairs and others standing behind the chairs.

BUT, Noah is standing up out in front of them all, BY HIMSELF!

Daniel & I freeze.

What the HELL?!

We exchange horrified glances.

I begin screaming in my mind.  “WHY IS he out in front by himself, and WHERE is his shadow teacher?

WHY is she allowing him to be standing up like this, out in FRONT, sticking out like a SORE THUMB?!?!

He must be so scared, or stunned, or embarrassed by being in front of so many people that he doesn’t remember what to do or where to go..

Poor sweetheart.  This was too much for him..

I’m actually on the verge of quickly walking around the back of the crowd and moving closer to where he is to try and fix this situation, since his teacher and shadow teacher seem oblivious.

But I don’t move because just then, the music starts.

I now know I’m too late – it’s too late to do anything about it without causing a scene.

I catch a side view of Daniel – he’s covered his mouth with his hand, and seems to be bracing himself.  He’s as mortified as I am.

I’m FURIOUS. And we work with his teachers. They’re our colleagues – and before this moment – I loved them dearly and deeply respected them.

I start strategizing how I’m going to handle this diplomatically. Maybe a carefully worded email to the Elementary principal?  Or better yet, a face-to-face meeting with the principal.  Yep, this requires face to face, and I’ll open it with my usual, highly-practiced, soap-box rant about the importance of special needs inclusion.

So before I know it, Noah starts spinning around with his hands out.

This is weird. This isn’t usual. But what I also see is that while he is still definitely out in front, his classmates have stood up from their chairs and are spinning around too.

I watch in confusion.

Then Noah stops spinning, walks over and clocks one of his fellow classmates over the head, and both he and the boy fall to the ground.

Nothing in the world makes sense at this moment.

Before I have time to begin praying, both Noah and the boy pop up to their feet, the boy runs off around the back of the group, and everyone stands up and starts spinning again, Noah included.  And Noah is STILL in front.

Wait a minute. There’s a pattern to this.

The air around me is completely still.

Noah finishes spinning, then hits another classmate on the head and they both fall to the ground. Then they both pop up, the classmate runs around the back, and Noah stays out in front.

Daniel and I exchange glances again, but now our expressions have turned from those of horror and anger to surprise and disbelief.

This is real. This is on purpose. Noah is literally dancing, and following a choreographed routine. In front of people. LOTS of people.

He repeats this cycle over and over, and it gets cuter and more miraculous each time.

I’m absolutely stunned, and my eyes fill up with tears.

His teachers believed in him. They included him. And not only did they include him, they gave him the LEAD ROLE in this song.

In one year, he went from not being able to stand and “sing” in front of a small, crowded room without becoming overwhelmed and crying – to this proudly and boldly performing in front of a large gymnasium filled with people, AND having successfully memorized a series of repetitive moves.

Yep, you’re damn right I’m going to have a meeting with the Elementary principal – but now I plan on complimenting her on how absolutely AMAZING and wonderfully inclusive her teachers are.

So now I’m floating, my vision blurred through my tears, and Noah gets down to the very last little girl still sitting in a chair. The only one in the row who has escaped his cute wrath of being clocked over the head and falling out of his/her chair.

And all of a sudden, he turns around and runs as fast as he can towards the end of the row of chairs.

Daniel and I both belt out laughing (because the way he runs is so freaking cute…) and we both assume he’s forgotten to “clock” the last little girl.   (If you watch the video, you’ll actually hear Daniel laugh and say, “He forgot one!”)

But Noah didn’t forget anything. He did exactly what he was supposed to do.

The last little girl wasn’t supposed to fall out of her chair – she was meant to stay in her chair and lie down and fall asleep.

Perfection.

Needless to say, I felt deeply ashamed for having doubted Noah’s teachers – and I have never been so happy in my life to have been proven wrong.

Noah was glowing when we saw him afterwards, and we couldn’t hug and kiss and praise him enough.

He was so puffed up and proud of himself – it was awesome.

And even though he couldn’t really tell us how he was feeling, we could see it in his eyes.

So this is dedicated to Rania, Sarah, Diana, and to ALL the teachers out there who love their students as if they were their own, and believe in them enough to give them chances to shine.

And to Amanda, the mother of Caleb (the sweet little boy shown in that video in West Virginia) I don’t know if you’ll ever read this, but if you do, please know that this is certainly not meant to gloat about my child’s experience when you’ve both just gone through such a horrible and traumatic ordeal.

It is sincerely intended to send out hope to ALL parents of children with special needs.

There are so many teachers out here in the world who will treat your little boy with the love and respect he deserves, and I pray with every fiber of my being that he encounters those teachers soon. I pray that they make him the star of the next show, and believe he is capable of great things, because he is.

Wishing everyone near and far a very Happy Thanksgiving, and if you’d like to see something that might make you smile, here’s Noah’s video: