Tuesday, March 31, 2015

Well, That's Awkward

Sometime last winter I was Skyping with Matt and Mary.  They were in Morocco for a year after we left and, truth be told, we Skyped almost daily.  No one else was around; it was just me.  We had been planning their move back to the States and four doors down from us for a few months.  I was sharing with them our struggles with Joshua/Baby A and how difficult it had been.  And I told them I just really needed them to be there in person.  And I'm crying.

You know what's super awkward?  Crying over Skype.  Because it's not like you can reach out and hug someone, get them a tissue, pat them on the back.  You just have to sit there and watch, maybe mumble an,"I'm so sorry", "It's going to be OK". And as much as he loves us, Matt's not very touchy-feely emotional, so I'm sure it was all he could do to keep from getting up and leaving the room.

But he didn't.  They stayed.

What I was trying to convey that day was that we needed some family to do life with.  We knew it was not a possibility that any of our family was moving to Reston, but the Stephensons are the next best thing.  We had become family in Morocco; everybody needs some nearby and ain't nobody got family in Morocco. Unless your Moroccan.  Ahem. Anyway,  I'm sure some of you have experienced that.  We needed someone to love Joshua like we do, to be able to go throw him in their care when we were desperate for a 30 minute break.  We needed encouragers and people we could totally be ourselves with.

We certainly have a few other friends up here that would fit that description, and definitely a great community at church, but this needed to be a stone's throw.  Walking distance.  10 minutes was just too far for this stage of life.

They moved in September and it has been better than we hoped.

In considering the Stephensons move we were mostly counting on the benefits for ourselves (Joe and me).  But the entire family (yes, even you William) has blessed us in unexpected ways.

As I've written before, G had been longing for a sibling peer.  Carolyn (3.5 years) has become that sibling.  Not only does he have a playmate that is almost always accessible, he is learning conflict resolution!  Oh yes, they fight like cats and dogs, but this too is a blessing.  We have watched G mature over the last 6 months; turn taking, compromising, and speaking kindly.  He has a ways to go on this, of course.

Carolyn and William have been a help for Joshua, too.  Because of years of indifference from Joshua, G has largely given up on them playing together.  He mainly just lets Joshua go his own way.  I don't blame him, and he doesn't do it unkindly.  However, Carolyn and William are younger and don't understand what's going on with Joshua.  So they are a great challenge to him.  They still attempt to entice him to play, they annoy him by trying to "share" toys, and they scream and shout.  Yes, even that is a good thing.  One of our current goals for Joshua is for him to tolerate many different situations.  Especially the ones that aren't necessarily his favorites. Recently, Joshua and William have begun playing together a bit.  There has been some giggling, and chasing with turn taking.  Joshua seems to really like and be most tolerant of William.  We're not sure if it's because they are closer developmentally (and Joshua can sense that) or something in William's personality.  But it warms my heart every time I hear William excitedly exclaim,"Jah-wa!" (Joshua)

And Baby A?  Well, she loves just everybody.  Especially Baby Thomas.  And Aunt Mary.  And you wouldn't believe the angst she is causing 2 year old William now that she is walking.  The way he reacts, you would think she is a big scary monster coming towards him to take ALL of his toys.  I think eventually these two will be best pals.

Joe and I have always thought we could live just about anywhere in the world, in about any circumstance, as long as we had good friends (or family) to laugh with at the end of the day.

Turns out it's true.

The only photo of our crew.  There are 2 new people since this one.

Monday, March 30, 2015

"I Don't Like Her"

It's funny, we thought that completing an overseas move while I was on bedrest (buying 2 cars, moving homes, registering folks for school, drs. appts, setting up the household) was about as stressful as it could get.  

The winter of 2014 heard about that and it LAUGHED IN OUR FACES.

I don't think any of us were under any grand illusions that Joshua would be a huge fan of baby, but things were harder than we thought they would be.

This illustrates nicely Joshua's meeting baby A for the first time. "What baby? We don't need a baby!"

Remember how I mentioned in the last post that while I was on bed rest, I didn't do much caregiving for Joshua for about 3 months? Tack on another couple weeks postpartum, and we'd had quite a break from each other. At that time we didn't fully realize how important quality time is with Joshua.  Because he doesn't know how to engage and communicate with people, WE have to be very diligent to be in relationship with him.  You have to really work at it.  And a lot of the time it looks like you are standing there talking to a wall that gives you no feedback.  But if you're not in there, plugging away at it every day, your relationship will really fade with him.  And then he REALLY won't give you the time of day.  

Joshua was probably really hurt.  Not just that, in his mind, Mommy hadn't been spending much time with him, but then on top of it she's holding someone ELSE all the time now.  And I knew he was mad at me, but also, if he could have talked, this is what Joshua would have said,

"I don't like her."

"Her" being new baby sister A.

While I began working to repair my relationship with Joshua, I had to hand A off a lot to Joe, my Mom, or the bouncy seat.  And even though Joshua and I eventually got back on good footing, he was still not pleased with baby.  And thus followed some of the darkest times of our life.  

Truly, I'm not sure I'll be able to adequately describe those months, but I can give you a snapshot into my day.  This happened too many times to count:

I would be home alone with all 3 kids.  Between illness and snow days last winter we spent A LOT of time in our small place together.  It would start like this: Baby A would sneeze or make some other small noise.  Joshua would go from completely calm to an ALL OUT SCREAMING tantrum within a second.  And here's the problem with Joshua's tantrums: 8/10 times it involves head banging.  As in, he throws himself on the floor, crawls off the cushy area rug (stinker), and proceeds to bang his head AS HARD AS HE CAN on the floor.  I run to him to stop his head banging.  By now, Baby is upset and crying.  I leave Joshua, grab her and take her upstairs so that he can't hear her and put her in a safe place.  For the next 20-30 minutes I rotate between upstairs and downstairs to make sure everyone is safe and hopefully calming down.  Of course, Baby A at any moment may get upset, because she's a baby after all, and the whole cycle will start again.  Joshua's trying to hurt himself and will continue until baby is quiet.  But which child do you grab first? 

On an anxiety/adrenaline scale from 1 to 10; 1 being completely chilled out and calm, 10 being that feeling you have when you have a near miss with a semi-truck; I lived for months at an 8. Months. Just thinking about it right now makes me a little ill.  

And then, while this is going on and on, I was trying to continue to make Joshua feel very special any way I could because I couldn't explain to him verbally about his new sister and my love for HIM.  And to be honest, this was exhausting.  I clearly remember telling Joe that I just wanted to go off somewhere for a week with Baby A to get to know her and spend time with her.  Much of the time I felt like I wasn't able to enjoy her because I was worried about Joshua watching us. And it was probably magnified in my mind (and hormone-filled body) because I knew this was most likely my last baby.  

But we just kind of hung in there until it got warmer and Baby A got older.  I went to counseling, our Moms visited, our small group prayed, and then one day, at our prompting, Joshua gave Baby a KISS.  

KATIE BAR THE DOOR (Shout out to Dr. E), I texted just about everyone I knew and told them. And it was so sweet for our friends and family to rejoice with us.  

Sure, 20 minutes later her was mad at her again, but it was a sweet little glimpse into what could be.  

Tonight, almost exactly a year later, Joshua showed lots of excitement when she got into the bath with him.  They took turns splashing and giggling and he was gentle with her.  This is a very recent change for him, but like I've mentioned before, A has always thought Joshua hung the moon, so she is more than ready to play with this brother.  

And lest you guys think that surely I'm running out of topics to discuss by now, sorry, I'm just getting started.  

Friday, March 27, 2015

Off to School

We got back to Northern Virginia in mid- August of 2013.  For the first month we would be staying at an extended stay while our renters moved out and we got the house back up to snuff.  It was the beginning of my third trimester with A, and within a day of Joe going back to work I started contractions and was put on modified bed rest.

Hotel bedrest.
What followed was roughly 3 months of everyone BUT me taking care of Joshua.  He would come visit me in bed and wallow around (his favorite) and sit on my lap downstairs.

What I did do for him during that time was get all his paperwork and evaluations completed so that he would be eligible for special education preschool in Fairfax County.  Anyone who has ever done this knows that the whole process is a bummer.  Not only are you running this toddler around to assessments, but you're digging through mountains of junk to find a specific paper from your mortgage closing 5 years ago...in the middle of moving.  And it takes a long time.  From start to finish it took 3 months to get Joshua in that classroom.  Meanwhile, he's sitting at home everyday losing valuable teaching time.  I'm not dogging the county, they actually do a great job, it just is what it is.  

During this time we crossed our fingers that he would qualify for a lot of services. No, you don't want your child to be severe, but you do want as much help as early on as possible. Also, we were really hoping to get him in the classroom before A was born.  We didn't want him to think that because she came home he was shipped off to school everyday.  Thankfully, he started about 2 weeks before her birth day.  

Joshua qualified for the Preschool Autism Class or PAC, which is what we were hoping for. Even though there was a PAC class at the school I taught in before having G, I still didn't know much about it.  Oh dear, it's wonderful.  Joshua goes to school 5 days/week: 3 full days, 2 half.  He rides on a school bus with seat belts with his classmates.  A wonderful lady helps him get on the bus and buckle up.  Seeing his bus drivers are a favorite part of my day.  PAC classes are in regular elementary schools, in normal classrooms.  They typically have 3 teachers and only 6 kids.  It's amazing!  Joshua's class has always been all boys and they are just the sweetest.  It's a very structured day, but I'm sure most of it seems like play to him. He gets lots of one-on-one attention from his teachers and has learned so much. By the time he goes to Kindergarten, he will have been in the same classroom for almost 3 years.  

I'll never forget dropping him off for school that first day.  It was in late October, just after the 2 week government shutdown, which is why I'm guessing Joe wasn't with us.  (He had to go back to work sometime!) We had focused so much on wanting to get Joshua out of the house and into the program that we hadn't thought about what that actually meant.  

It basically meant that I was dropping my 2.5 year old off for Kindergarten.  

Starting preschool can make you a little weepy, but in my experience, Kindergarten is the biggie.  They go ALL day, 5 days a week.  And it's the start of a journey that ends in them leaving for college.  UGH.  

Joshua's first day of school. Oh my word.  He was such a baby.

When we pulled up to school that day, I had to tell myself very firmly that it wasn't about me and my needs to have my baby home with me longer.  I had to put aside my emotions and desires to do the best thing for Joshua.  

He was thrilled, of course.  He loves school! And don't think there wasn't part of me that was relieved for him to go to school.  Oh yes.  Any toddler is a challenge, but Joshua is difficult to keep engaged at home, and again, I couldn't communicate with him.  So those hours every week are surely a blessing. 

I'm sure I will write lots more about school in the future, but for today I'll leave you with the picture of Joshua after school for at least the first few weeks.  

Back on Monday...which is the start of Spring Break.  Lord help me.

Wednesday, March 25, 2015

"I Don't Like Him"

We returned to the States in the summer and began home leave.  After completing a foreign post,  foreign service officers usually get an extended time off to see family and become re-acquainted with America.  We spent over a month in Texas seeing all our family and lots of friends.  Joe and our parents carried us through this time as my body is less than stellar with pregnancies, but it all worked out.

Joshua did a fantastic job of transitioning from house to house.  He was probably thrilled to have so many people around playing with him.  And having Daddy 24/7 is always a bonus.  I was worried that he would have a hard time leaving our house, yard, and most of all Khadija.  He was truly her boy. But he didn't show it, and the summer went by.

It was at some point in Texas that I overheard 4 year old G telling Joe, "I don't like Joshua."  

Oh dear. I panicked and got really upset.  (What do you mean you don't like Joshua???!) Which is why it's good that Joe was handling the conversation.  

What it boiled down to was that G was deeply hurt.  He didn't understand at that age why Joshua wouldn't play with him.  G was desperate for a peer.  And Joshua, being his brother, was supposed to be that playmate.  I think it hit home for him after he spent a week with his same-age cousin.  Why didn't Joshua talk to him?  Why didn't they chase each other or play cars?

When I got pregnant with Joshua, I was hoping he would be a boy because they would be close in age and thus, great friends.  Of course G didn't pay much attention to him as a baby, but as time went on he tried to get Joshua involved in what he was doing.  

The only time they played together was when we facilitated it.  (Or back in Morocco, Khadija and M'Barek)  They had a great time together, when Joshua was on board with it, and would laugh and giggle.  But the adult has to be there; Joshua just doesn't know how to initiate and sustain play.  

We were able to explain to G the best we could about Joshua.  And also had G start praying every night for Joshua and his specific struggles.  That has certainly helped.  And he does really, really love his brother.  In the past several months, as G has matured, he has become a great protector of Joshua.  Recently, Joshua has begun to let G hold his hand to take him places: across the street, through a parking lot, and he takes GREAT pride in this.  I'm sure he's still disappointed; I know he is.  Ansley has been a great gift for G.  I think he loves her all the more because she interacts with him.  Even if it's a "No! No!",  like recently.

But Joshua has his own hurt.  G is very extroverted and demanding of our attention.  Looking back, in the early years especially, we gave G more attention during playtime due to his personality.  Couple that with a child that again, is playing quietly in the corner, and it gets tricky.  Especially before his diagnosis.  We know now that Joshua notices most everything, even though he may not acknowledge it.  (You can catch him giving a quick flick of the eyes around the room.)  It was so bad, that Khadija, very respectfully, brought it up to me once.  She, in her limited knowledge, thought our lack of attention to Joshua was what caused his autism.  We know that's not true, but it was still a punch in the gut.  Even now, if Joshua is engaged in play with us and G comes up to get in front of him, he doesn't fight back, he just slinks off.  Now that we're aware of this, we can be diligent about including him and having G wait for his turn.  


Though it's tough now, I fully expect for Joshua and G to develop a special friendship as they grow older.  I don't know what it will look like, but God does.  And that's more than enough for me.

(It should be noted that A worships Joshua.  She has no clue that she is pretty much the bane of his existence. That's for another post.)

Be back Friday.

Monday, March 23, 2015

Joshua, Part Six

Part 1 Here
Part 2 Here
Part 3 Here
Part 4 Here
Part 5 Here

The reason I started writing these posts was for others.  When I said I don't talk about this stuff, I really meant it.  Sweet friends and family members ask often how Joshua is, or how they can pray for us and 9 times out of 10 I give a VERY short answer.  Not because I don't want them to know or understand what's going on with him, but because I'm exhausted.  You would have to catch me at just the right time to get the goods.  And I don't like that at all!

You see, for some reason it is enormously taxing to really discuss all of this.  My thoughts, feelings, questions, and even what he's up to these days.  And I know I HAVE to talk about it with someone.  But I spend that energy with Joe, and with my longtime counselor, Gail.  (God bless her)  I also talk some with cousins and dear friends of mine that have a son Joshua's age on the spectrum.  I'm pretty sure my priorities are right on this one.  However, when I recently realized the lack of information out there, I knew I needed to fill everyone else in.  People investing in our lives should know what's up.  We desire to live in community with others, whether near or far. And we want to hear the good, along with the hard things that our friends are walking through.

But here's the thing, I KEEP writing for me.  After writing the first post a week or so ago I came away feeling really free.  Really, really good.  The process of thinking through our journey and writing it out has been so therapeutic.  I was surprised- I had never experienced that through writing.

But I'll take it.

Also, I am desperate to learn something through this.  I believe that trials are the catalyst for maturity and wisdom.  Not to mention humility and hopefully a kinder heart. Since I've been in survival mode for two years I haven't felt like I've been able to pinpoint what I'm learning, but hope through the writing process, I will.

And of course the messages, texts, emails and prayers from y'all for our boy and us have been so, so encouraging.  It is so appreciated and we are feeling dearly loved. Thank you for reading.

You're too cute.  Stop it.
I'm feeling bad that I haven't mentioned Joe and where he is in all of this.  It's a little overdue, because he is the real hero in this situation.  He is the one who is endlessly patient with Joshua....and me.  Oh, and I need the patience.  And the grace.  Joe is constantly thinking of ways to teach Joshua, play with him, pray for him more specifically.  I don't think it's any coincidence that Joshua's only spontaneous word so far is "Daddy."  As for me, Joe looks for new ways to serve me, take more off my plate, and encourage me.  There is no question that I'm receiving the better end of this deal. Don't get me wrong, he is human too, and I know he gets frustrated and discouraged, but he has stepped up to the plate in a beautiful way for this family.

I'll pick back up Wednesday with our return back to the States and our new normal.

Friday, March 20, 2015

Joshua, Part Five

Part 1 Here
Part 2 Here
Part 3 Here
Part 4 Here

At a month to the day we flew back to Morocco with an arsenal of ideas to help Joshua in the coming months.

I had my first Mama Bear of a special needs child moment before we even boarded our first flight.

Coming through Paris on the way to the States, the airline did not give me our stroller during our layover.  This is something we take for granted in the States: you walk up to the gate, fold your stroller and get on.  Upon arriving at your destination they hand it to you as you get off the plane.  NOT ALWAYS THE CASE OVERSEAS. I spent 5 miserable hours at Charles De Gaulle airport corralling a 2 year old who didn't understand a word I said.  And was already quite heavy. I was ticked.

So there was no way I was going to do that again.  While boarding I had it out with the gate agents and Air France flight attendants, insisting that I HAD to have access to that stroller in Paris; getting it in Rabat was not going to cut it.  They kept pushing back, Joshua's throwing a fit, a VIP African Ambassador is trying to board along with the Secret Service, and no one knows how to translate "autistic" into French.  We finally got the idea of "special needs" across and they begrudgingly tried to find a space for it on the plane.  I all but got out my screwdriver and pliers to break that thing down into small enough pieces to store on the plane.  Parts of it were scattered in places from tip to tail.

Once at home I plopped Joe in front of the therapist's videos and we began implementing the games into our play.  Joshua responded really, really well.  He learned very quickly that adults are VERY fun to play with and are accessible if you just ask.

(He wasn't talking at this point; he would request things by physical touch. Oh wait, that makes it sound like he's talking now.  He's not.)

Back in Morocco

This is where Matt and Mary really enter the picture.  They had arrived at post the past summer, and having mutual friends, we struck up a close relationship quite quickly.  As a bonus they lived on the same street as us so we spent some time with them almost every day.  But it really broke my heart when they sat us down and asked us to teach them how to play with Joshua; how to meet his needs.  They love him (and us) so much.  Matt is generally preferred as Joshua has figured out that men are usually more fun than women because they wrestle/tickle/throw him around.  His very favorite!!  But Joshua knows that Mary is there too and it makes me so happy to see him communicate with her as he does me.  Matt created his own games with Joshua that they enjoyed for the duration of our time in Morocco.

Matt and Joshua on his birthday.

Coming back, though, was not all fun and games.  About 2 months into it, right when we were getting in a groove, we found out we were pregnant with A.  

I'm not sure if this is something you write about in a blog, but make no mistake, the timing of A was NOT PLANNED.  We had always, always wanted a third child, but probably wouldn't have chosen a time when we were dealing with so much unknown and feeling so vulnerable.  Not to mention an international move in the big middle of my third trimester.  

Most of my fear (is anyone else sensing a theme here?), stemmed from simple logistics.  How was I supposed to take care of a newborn and Joshua (who in many ways was still very much a baby), at the same time?  The thing that stuck out the most in my mind, still not sure why, was how to get them all in and out of the car.  Joshua couldn't follow any directions at the time and the whole idea of 3 kids, when I hadn't figured out 2, was overwhelming.  So the first decision made was that a minivan with electric doors would be purchased upon arriving stateside.  (Sigh)

Upon learning of my pregnancy, I slipped right back into my state of shock and numbness.  Except this time it continued for several months.  Looking back, it may have lasted an entire year.  I went from loving, caring and serving other people to being completely insular. I was a terrible friend and know that I hurt many during that time.  Not because of anything I did, but what I didn't do. I just wasn't there for anyone: mentally, physically, or emotionally.  

Maybe you're wondering why a pregnancy, one that I was excited about, though surprised, would bend me so out of shape.  I should mention here that I have suffered from anxiety and depression for 13 years and my margins are just not as wide as some people's may be.  And that's OK.  But sometimes, things are going to spill outside the margins, and you're going to have to deal.  

I was able to go about daily life in Morocco: work, be a mom, wife, travel, attend social functions.  But I'm sure I was just skimming the surface; surviving.  

We finished our tour, said many sad goodbyes (the emotions made a brief appearance), and headed home. 

Saying goodbye to our Khadija.

See you on Monday!

Thursday, March 19, 2015

Joshua, Part Four

Part 1 Here
Part 2 Here
Part 3 Here

I guess I should explain why the diagnosis of autism was so fearful to me.  Because of course, OF COURSE, there are worse things.  Harder things. Much more complicated and tragic things. And I am certainly not the first mother to hear those words. However, in my very limited knowledge of autism I assumed that it meant he would not be able to have meaningful interactions and relationships with people, most selfishly me. Or even if he were able to, he wouldn't care to.  Not being able to have a connection with my child was something that I couldn't even fathom.  And my biggest fear.

I know now that this isn't true.  The autism spectrum is wide and varied and though their relationships may look different to an outsider, people with autism can have great ones.  I should have known from the first time the label was applied to Joshua that we would continue to have a sweet relationship with him.  In both evaluations I heard over and over again how great of a relationship Joshua and I had, physically and emotionally; he would check in with me with his eyes, and physically with hugs as he played, and happily held my hand coming into the office.

To give you a picture of Joshua at the time of his initial diagnosis; His strengths: calm, happy demeanor, some eye contact, good motor skills, emerging ability to imitate behaviors of others, and able to participate in some back and forth exchanges with others.  His challenges: lack of reciprocity (non-verbal turn-taking), communication (expressive and receptive), and disinterest in understanding and  participating in the world of ideas.

One of the reasons we loved Family Compass (the second place he was evaluated and where he continues to get private therapy today) was because not only did they work with Joshua, but specialize in teaching the entire family at the same time.  They come alongside us as parents to meet Joshua's needs and support us in this journey. Some days, like yesterday actually, it's more of a counseling session for us as parents.

After the two evaluations were finished we had been in DC for a little over 2 weeks.  Together with Family Compass and the State Department, we decided that Joshua and I would stay on for 2 weeks longer for me to learn how to work with him during the last few months of our stay in Morocco.  During that time we would do Skype sessions with the therapist and then pick up where we left off once we moved back to Virginia.

(Side note: If there are any State Dept folks out there that are having any kind of push back with Med regarding this kind of thing with your kids, holler at me.)

Around this time my mom came and spent a week with us.  It was a great comfort to me and she got lots of uninterrupted time to bond with Joshua.  (I'm looking at you, G)  We attended sessions to lay out the foundations of how we would play and interact with Joshua at home.  The therapist taped all these sessions so that Joe (and Khadija, our helper in Morocco) could also learn.  We came up with a few games to show Joshua how to reciprocate in play and in turn show him how fun it is to engage in play with people.  This in contrast to going off for an hour by himself and playing.

(This was another red flag I missed, I thought he was just really good at independent play and an easy baby.  Looking back, it was excessive, and he was a little too happy to be in his own little world.)

I was slowly coming out of my shock of the diagnosis and feeling much more optimistic about the situation.  I attribute this to several things.  One, Joshua was the same sweet boy as ever, nothing had changed about him.  Two, all of the professionals we spoke to were extremely positive about Joshua's future.  And three, I was naive.  There were so many things to come and process and all I could see was the tip of the iceberg.

Which was good.  It was the Lord's grace.

With my boy. Tricia, if you're reading this, those are your hot legs in the background. 

More tomorrow...

Wednesday, March 18, 2015

Joshua, Part Three

Part 1 Here
Part 2 Here

The end of that last post was pretty dramatic, I realize.  But I don't think I can ever express what I was feeling that day.

Mainly shock.

I will never forget walking around Tyson's Corner Mall late that afternoon.  Joshua and I were meeting my dear friend Hope, who had come from California to spend the week with us, for dinner.  I've been coming back to this paragraph for days trying to put words to how I felt. I'm sure many people can relate to this after receiving different types of life-changing diagnoses.  An out of body experience?  Floating? Disconnected from my body? Definitely numb in a way I had never felt before.

When we got back to the hotel that night I ran into our friend Nick in the parking lot.  He and his family happened to be staying in the same hotel suites as us, another gift from the Lord, and they had been providing great support.  As we were exchanging pleasantries, he was expressing some frustrations in his day.  And do you know what I said?  What my big, black, ugly heart said?

"Well, at least your son wasn't diagnosed with autism today!"

It should be noted I didn't say it in the nicest tone either.

Oh my word.  That's something else I'll never forget.  Thankfully, Nick had so much grace for me.  And I've apologized many times since then.  (But I'm still so sorry Nick!)

I had a hard time talking about the diagnosis, even then.  Poor Joe was back in Morocco desperate for information.  So we struggled to communicate; I couldn't remember details, didn't have any desire to share them anyway.  We knew it would be a hard trip for me to do alone, but not knowing what the month held, couldn't realize how difficult it would be.

Moving forward, we had already decided to have a second assessment done at the recommendation of a local friend in the medical field.  She pointed us towards an EXCELLENT group of developmental specialists right around the corner from our house in Reston.  I don't think we believed they would tell us anything hugely different from the first psychologist, but I was not a huge fan of her, and from what I knew of Family Compass, I would feel more comfortable working with them for the long haul.  That same friend, Nicole, made a personal call to the head of the group and got us in within a couple of days.  Amazing. Then, she accompanied me to the appointment to help me ask questions and take notes.  I needed A LOT of hand holding in my shock, especially without Joe.  And then, to really serve me, she called both Joe and my Mom and gave them a complete rundown.  So, so helpful for us all.

It was around this time that I got a reality check from God.  My main goal for all of my children is that they know the joy of the Lord.  Because really, if they have that, no matter what their circumstances, they will be at peace.  Now I'm not one to literally "hear God's voice" very often, if ever, but one day when I was wallowing in self-pity, this wisdom was spoken to my heart:

"I know what you dream for your child, but you don't get to choose how he gets there."

Well, dang. Isn't that the truth?

It was really a kindness from God.  Because once I accepted that, I felt like I had a new perspective.

One of my favorite pictures of Joshua.
See you tomorrow...

Tuesday, March 17, 2015

Joshua, Part Two

Part 1 Here

I'm guessing you've never secretly wished that your child is deaf.

Along with not talking, Joshua did not seem to hear us, or understand what we were saying.  Right before our trip back to the States we had dear friends that visited (and observed Joshua) for 3 weeks.  They thought he acted like a deaf child might.  I was starting to get scared about the situation.  What were the doctors going to find?  We didn't think he was deaf ONLY because he would come running from 2 rooms away when Mickey Mouse came on the TV.

Could he BE more precious?

The one thing I was certain of was that he was NOT on the Autism Spectrum.  He made eye contact with us all the time and he was very affectionate.  I also didn't think he had an intellectual disability.  We had observed him doing many things, such as problem solving in various situations, for that to have been a major issue.  I assumed that he had a processing disorder or something along those lines.

However, something in the back of my mind was telling me it could be big.  And scary.  And I think that's why, as I drove him to the audiologist, just hours after landing in DC, I prayed that he was deaf.  That may sound crazy to you.  But if he was deaf, he could still learn to communicate, perhaps get an implant, and live a "normal" life.  He would have challenges and it would be hard work, yes, but I felt we could deal with that.  (If anyone reading this has a deaf child, I am in no way trying to minimize this disability, I am just being honest about my thought process, wrong as it may have been.)

But don't you know he passed that hearing test with flying colors.  Or in the audiologist's words, "That boy can definitely hear."

So it was on to a child psychologist to do a full developmental evaluation. We spent 3 full mornings with her while she observed Joshua, seeming to him like lots of play and games, and I really started seeing the deficits.  My degree is in early childhood education.  Though it's been more than 10 years, I had all sorts of classes on just this thing.  I'm no specialist, but there were lots of things I should have noticed.  Mommy blinders, I guess.

As the hours went by, I got more nervous, more stressed out at what the diagnosis would be.  When it came time, a former Kindergarten colleague/dear friend took off work and came with me to the appointment.  Doing all of this an ocean away from Joe was not ideal. She came to take notes and ask questions that I might not have the wherewithal to ask.  What a gift.  Because really, the only thing I heard during the hour and a half meeting that morning was this:


Part three tomorrow....

Monday, March 16, 2015

Joshua, Part One

I've always struggled with whether I should write about this or not.  It's not a secret; if you've seen us face to face in the past two years you know about what follows.  But I've come to a place that I feel the need to share about our son.  A place to talk about the goings on in our family that I often don't feel like talking about face to face.  If you know me well, you might be shocked that I withhold in daily conversations.  I'm a pretty open book about anything and everything, but when I recently realized that I don't even share with Mary, my close friend and neighbor whom I spend every day with, about most of this, I was surprised.  But she wants to know.  I think most of our close friends do.  And the task seems more surmountable on the "page".

I'll start at the beginning.

From the time he was born we never worried about Joshua.  He ate great, he slept great, he GREW, he hit all his early developmental milestones.  He never got sick.  We just knew he would be the easy one, medically speaking.  This compared to G, who by the age of 2 had 6 specialists trying to figure out why he wouldn't eat, grow, stay well, and meet those developmental milestones.  (All of that was fixed at age 3 by starting a daily injection of human growth hormone. Turns out he has an ectopic pituitary gland and can't make it on his own.)

Joshua, 6 months old, days after arriving in Morocco.
However, while worrying about G and trying to figure him out, Joshua started slipping.  We looked up at 18 months and realized he wasn't talking.  Only babbling. He had no words.  Not Mama, not Dada, not "no." G was a very late talker, so we thought maybe he was just a little behind. He interacted with us, was affectionate, and laid back.  So we weren't too worried and he got pushed to the back burner as we traveled home to the States for a month of R&R, the family dog bit G and he had plastic surgery, we found out about the growth hormone issue, I had skin cancer removed, etc, etc.

By 21 months, back in Morocco, I knew something was wrong.  He still wasn't talking.  We took a trip to Brussels. We figured out G's new medical stuff.   We re-potty trained G after his trauma with the dog. Along with Joe, I was busy working at the Embassy.

21 months. 
At 22 months, he still wasn't talking.  It makes me a little sick right now writing out this timeline.
Looking back, I can't believe we let it go on this long.  But at the time, everything else was screaming at us while Joshua played quietly and sweetly in the corner. I took him in to the Embassy medical unit when the doctor was at post doing visits and I think it's fair to say he was alarmed.  He made plans to send Joshua back to the States for a full work up.  We would leave after Christmas.

To be continued tomorrow...