Short Attention Span

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NathanAndJoeyToo long since I’ve written? Yes, yes…ever so too damn ass long! Over the course of the nearly 9 months (WHAT???) since I’ve last posted, Nathan finished first grade, Joey graduated from preschool, we moved from Maine to Texas, we spent nearly a month in California, both boys started at their new school, and I started back to work full time.

But all of these things are just excuses. When I don’t write in this blog for extended periods of time, it’s usually because I need a psychological break. And things have been, largely, much better with Nathan. He is still behind and slower when it comes to his motor development, sure, but it isn’t stunted completely. He makes progress. He reads slower than his peers, but he reads. His writing is like chicken-scratch, but so is mine. As long as we can teach the kid to type at some point, he should be able to stay up to speed in his later school years as far as that goes, because every high-school kid around here is issued a laptop, and I’m guessing that no matter where we are by the time he’s in high-school, that will be the standard.

Sunday, Monday, Happy Days

He has made friends this year, although the one he’s attached most too concerns us a little. This kid apparently picks things up from home and then brings them into school. I have a whole big thing about “bad words” and how dumb I feel they are – just another man-made concept that makes it harder for teachers to do their jobs. Seriously, take the power away from a bad word and it’s just another string of letters like any other I’ve typed here. Who decided that my kid can say “shoot” all he wants in the same exact context as “shit,” and yet one gets him sent to the principal’s office and the other is just fine? It’s so arbitrary!

That said, I’m not encouraging my kids, nor am I (in front of them) subscribing to a rebellious, cavalier lifestyle of sailor swearing to stick it to the man.  Though I have just come back from a “mama time” trip to Maine wherein I may have broken f-word records when no children were with in earshot. Especially freakin’. Just couldn’t get enough of freakin’ for some reason. Anyway…

Nathan and Joey are both pretty good when it comes to controlling their language. But man, some of the things that Nathan tells me about his pal “Potsy…!!”  Nothing like hearing your 7-year-old say, “you know what Potsy said at school today? He said, ‘I wanna have sex with my sweatshirt.'”

I turned into the Jewish mom from South Park when I heard that one:  “What-what-WHAT????”  (And, by-the-by, no, the kid’s name isn’t actually “Potsy”, but I’m changing it to protect the innocent; if by “innocent” you mean a kid that taught my second grader about having sex with a sweatshirt). Anyway, I asked Nathan if he knew what that meant, and he smiled, a little embarrassed, and said, “yeah…like…making out.”

Oh, there’s plenty of  innocence left in him, thank goodness.

We have discussed breaking away from this particular friend on many occasions, for a variety of reasons, including that fact that he is simply all that great of a pal to Nathan, but he can’t quite break away because Potsy cracks Nathan up and I think makes him feel cool. He’s hanging with a kinda bad kid. This is a lot different than hanging with another kid last year that got special services at our school in Maine and would cry if Nathan spoke to any other friends. I think Nathan’s starting to get to a place where he doesn’t always feel “normal,” and perhaps Potsy makes him feel a bit more normal.

Meanwhile, the ring of kinda bad/cool kids in Maine ousted Nathan from day one; made fun of his snacks, took his hat on the playground, never invited him to play with them, etc. To be a part of a “normal” crowd here in Texas has meant a lot to him. Unfortunately, it’s the Potsy gang, and so along with this screwed up “normalcy” comes exposure to the concept of fornication with clothing.

ADHD? Just the Label of the Month, or what?

As always, though, Nathan has a way with the grown ups. His teachers and care providers all seem to be genuinely fond of the kid. In fact, when I’ve dropped him off at school a few times, all kinds of people that I’ve never met are fondly saying hi to him by name. His report cards have been excellent – A’s and B’s; E’s and S’s (Excellent and Satisfactory). I’ve never been informed of behavior issues thus far.

However, there is that attention issue that they’ve all been talking about here in the big TX. Ever since we switched over to the new state and the new school, and had all new evaluations to update his IEP (or ARD, as Texas is apparently the only state in our country to call it) the consensus was that Nathan should be tested for ADHD.

Steve and I have had a mixed reaction. On one hand, we’re like: “not another label!” Especially one, just like the autism spectrum, that tends to get overused. I mean, we can now pretty much 100% say that Nathan was misdiagnosed with PDD-NOS. It’s still on his records to get him the services he needs, but every doctor and official at school that’s spent even 2 minutes with the kid agrees that his main issue is a fine/gross motor developmental “mystery delay.” The school psychologist predicted he’s going to be “one of those kids” that just doesn’t fit any one label, and that she’s quite interested to see how he turns out because he does have so many strengths countering the weaknesses.

However, one label they  all seem to agree is worth looking into is attention deficit. When I hear ADHD, I picture Mike Meyers on SNL hooked to a jungle gym by a leash, leaping around with his hyperactivity. Then someone gives him chocolate and he suddenly has superhuman strength and drags the entire jungle gym through the streets.

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Nathan’s not like that, but the possible hyperactive piece we do see is in his inability to just walk. He takes a few steps and then hops. He jumps more than he walks. We’re in a second floor apartment right now and we’ve been imploring him not to jump, for the sake of the neighbor below us. We were being pretty strict with him about it when we first moved in. There was one day where I saw him jump, and literally, like watching it in slow motion (Wile E. Coyote style) I saw his expression change in mid-air, like, “ohhhh shiiiiit!” I saw first hand, in front of me, that lack of impulse control – his brain catching up with his body only after the action was already started. So help me, I saw it.

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We’ve noticed this more in other ways too – pinching and hitting his brother, talking back, engaging in behaviors he knows are not okay. He’s really a good boy. I can tell you with the utmost non-bias (really; truly!) that he’s a good boy feeling frustrated with the way his body and mind aren’t working in the way he wants them to.

Is this ADHD? I don’t know. He’s never been able to just sit and play with toys. There’s only a very select few television shows that will keep his interest for longer than ten minutes. His activities of choice will always be ones that have him moving around from room to room – never sitting in one place. He’s intense and exhausting to spend time with. He would happily talk for hours as one of his favorite pastimes, and he loves talking so much that there’s times when he brings up topics and asks questions that we’ve already been over, just to keep talking. He gets this little smirk on his face when we call him out on it. He knows it’s a repeat. He just wants to keep talking and he’s run out of topics.

In terms of school, every person that evaluated him here in Texas said that he was “easily distracted,” and he would try to talk instead of doing the work at hand. Now, could this be more of a thing where the work is hard for him because of the developmental delay, and so he’s finding a way to avoid it? Or is this a sign of ADHD, wherein when you have a challenge and/or something you’re not interested in, you simply can’t focus?

Don’t Most of Us Have Short Attention Spans?

Then again, as my mother-in-law aptly pointed out, “isn’t that all of us? When I’m not interested in something, I can’t focus on it, either.” Well, sure, that is true, and with all of these conditions, believe me, if you read up on them, you’d be like Steve and I and start going, “hey…I’ve got at least a slight case (as if it were a cold) of autism and a little ADHD!  I must!”

I mean,  for goodness sake, you should see me try to clean the house! I LOVE a clean house. I really, truly do. I’m also completely physically capable of cleaning a house, and I wouldn’t even say I “hate” doing it, as I think many people truly do.  The problem, for me, is it’s a never-ending story (with no weird flying dog or 80’s movie soundtrack anthem). It NEVER gets completely clean and uncluttered, or stays that way for longer than an hour, and it takes three times as long as it would anyone “normal.” Why?

Because I can’t just go, “okay, bedroom one:” and dig in until it’s finished and then move on to bedroom two, and finish that, and then the living room, kitchen, etc. I’m telling you, I can’t. This isn’t an excuse. This isn’t me wanting to be a little quirky and playing it up. When I clean my house, I start in on bedroom one, and I get maybe half way through the enormous pile of laundry that needs to be put away, and then, like that dog in “Up,” I see a squirrel, and I go chasing it to the next room.

Laundry’s not finished, but now I’m in the kitchen because one of the dishtowels (squirrel!) was in the laundry and once I’m in the kitchen putting that away, I start in on the dishes. I’m doing those, and then (squirrel!) I should go back and finish that laundry before I dig into the kitchen, right? Then my phone rings and I really should talk to my mom because I’ve been neglecting calling her because I have no attention span and life just always seems so busy and crazy, who has time for phone calls?

I put away a few more things while I finish the convo with my folks, slowing myself down because I’m holding the phone, and then (squirrel!) there’s an item of kids clothing in that load of Steve and I’s clothes that I’m now 3/4 of the way through putting away, although half of it needs to be rewashed or ironed, dammit, because we left it in the laundry basket too long and it’s all wrinkly. Well, great, more work! I take that one item of boy clothes all the way across the apartment to the kid’s room and hang it up.

Then I look around and see the state of their room. Holy freakin’ shit! Let me just get some of these toys picked up so there’s a pathway to walk, at least. I don’t wanna have to interrupt my cleaning by having to go to the ER with a broken ankle because Stinky the Garbage Truck tripped me.

I start in on the toys, but I can’t just put them in the bins randomly and get the room picked up expediently. I want to try and organize the bins into Star Wars toys, Legos, Playmobils, and miscellaneous so maybe the boys will be more likely to actually play with these great toys. Next thing you know I’ve dumped out every bin and there’s more mess than ever, but trust me, there’s a method to this madness because I am organizing! But, uh oh, (squirrel!) these kids don’t need all of these toys that they hardly ever play with!

Let me run to the kitchen and get a couple garbage bags – one for trashing and one for donating. While I’m in the kitchen, well, heck, the dishes are half-way done from earlier. Let me just finish those before I get back to the boys room, and check that off the list, since I’m gonna have to start making dinner soon, so I’ll need room in the sink for MORE dishes. But I still never finished the pile of laundry in our room. Aaahhhhhhhh!

Is that ADHD? Or just batshit crazy? Or just who I am, and freakin’ deal with it, Jen?

I have lots of incomplete projects. I have a really hard time doing things like thank you notes and Christmas cards. I’m not an organized person. But I can hold down and even excel at a job where my thoughts come out of my head and get typed onto a page in an organized fashion, in an articulate and grammatically correct way that’s not easy for everyone.

Are we just all different mind types with different strengths and weaknesses? Are we focusing on the wrong stuff – trying to find a “diagnosis” for this kid instead of celebrating his ever-so-many wonderful qualities? I wish I could just be hippy mom and hug him and love him the way he is, but when a team of people tell you they see an issue, and you think there could possibly be a way to make life a little easier for him, how can you not pursue it?

In part two of this blog, I shall go over the challenges of getting an ADHD evaluation in the state of Texas, and meeting possibly the coolest psychologist that has ever existed….coming soon, if I don’t see too many squirrels.

Frenectomies

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February 16th, at 9am, Nathan got his tongue “untied” in a little oral surgery procedure.

I suppose I should’ve been more nervous, but I guess a few things made it seem like not as big of a deal as some of our previous medical dramas.

One – He was super calm about it.  He was thrilled because I bought him a new Darth Maul double bladed light saber that he affectionately named “Dubbie,” and that seemed to be worth any potential pain.  He was also excited he didn’t have to go to school that day.

Two – We’re just talking laughing gas and novocaine.  Save for a few dissolvable stitches, it really wasn’t much bigger of a deal than getting a filling, I think.

Three – I’m getting conditioned for this shit.   Between all the tests and procedures, it does get easier every time, because you know what to expect and he knows what to expect and that takes 85% of the scary out of it.  Don’t get me wrong…I wasn’t excited.  I was a little tense.  I wished Steve was there.  But I wasn’t a complete wreck.

The name of the procedure he had is a “lingual frenectomy.”  This had me reflecting a little about 26 years in the past, when I had something called a “maxillary frenectomy.”

While Nathan’s frenectomy involved the thick skin under his tongue, my issue was the similar band of skin on the upper part of your mouth between your upper lip and gums.  In my case, the thickness of the skin was causing what I refer to as “the Lankford gap.”  Quite a few people in my family lineage have that space in between their two front teeth, but they weren’t handing out maxillary frenectomies on the farm in Tennessee, and honestly, I don’t even know if the procedure existed when my relatives or my dad were kids.

When I was in sixth grade, it became clear that I was going to require orthodontic help to create a smile that would not be visually distracting, in a bad way.  The dentist said I had my mom’s jaw with my dad’s teeth and that wasn’t the best combination, as luck would have it.

Everyone else in my immediate family has great teeth.  My dad’s got the gap in the front, but it’s cute on him.  On me, though, it was looking less Lauren Hutton and more Alfred E. Neuman, and the orthodontist said no amount of time with braces on my teeth would close it without this surgical procedure.  If they were going to pay that much money and put me through the physical pain of two years of braces, my folks, very wisely (even if I whined and complained at the time) wanted everything done right.

So, we were referred to an oral surgeon by the name of Dr. Waugh.  Dr. Waugh’s office gave my parents the choice of knocking me out completely, or doing a local anesthetic.   My parents grappled with this greatly, the poor things.  Full anesthesia was somewhat safe, but there were still those scary tales of rare cases where something went wrong.  My very careful parents thought “what if our baby never woke up because of a stupid little snip of the skin in her mouth?”   They figured that it wouldn’t be too painful and opted for the local anesthesia option.

Now, to this day, I don’t know if Dr. Waugh was pissed because he didn’t get more money from being able to put me under, or if her was irritated because it made the process more difficult on him, or if he was just one of the biggest ever lovin’ pricks you’ve ever met, but this man walked into the exam room where my 11-year-old self sat, nervously eyeing the metallic platter of truly enormous needles the nurse had set next to me, and didn’t say so much as hello.  No introduction.  No smile.  No eye contact.  Walked in aggressively towards me, and, almost in an angry way, grabbed the first foot long syringe and jammed it into the roof of my mouth.  I remember gripping the arms of the dentist chair as tightly as possible to keep myself from a fight-or-flight response.  I wanted to be a good little patient, but this was truly brutal.

I mean, maybe it had nothing to do with me.  Maybe he was having a crappy day.  Maybe somebody died.  Maybe his wife dumped him.  I don’t know.  But he was taking something out on the kid in the chair as one after the other he shoved 5 or 6 shots deeply and forcefully into the most sensitive parts of my mouth, including the front gums.

I’ve had two c-sections, an anterior cruciate ligament reconstruction, and a host of other painful things throughout my life, and those shots might have been the worst, or certainly in the top two or three.  It’s hard to say, because the memory of the actual pain has faded, but I remember truly feeling tortured in that moment.  It was awful, and his lack of compassion was very upsetting.  The only respite was that it was quick, and then the numbing medication took the pain away.

I recall that my mouth was about completely numb almost immediately, but I could taste and feel blood in my mouth and on my face.  I asked my mom if I was bleeding and she looked at me and got a little pale, but did the mom thing that I now understand where she lightly said, “oh, just a little, honey.”  That jerk, Dr. Waugh, hadn’t even bothered to wipe the blood off my face.

I didn’t feel the procedure itself, but I remember feeling like a slab of meet.  He never once spoke to me.  I’m sure the nurses said something, but don’t remember them being terribly warm and fuzzy, either.  I remember he continued to be rough, at one point doing something that was almost like he was sawing at me and I think he barked at me to stay still even though it was his over aggressive motion that was moving my head.

Anyway, the whole thing was just horrifying, and my poor mom and dad have always felt awful about it, but they only did what the dentist told them they had to do.  The scary thing is this guy came recommended.  Over the years, I told my tale to others and collected a handful of equally disconcerting stories about  Dr. Waugh.  One girl, while getting her wisdom teeth out under anesthesia woke up in the middle, opened her eyes, felt the pain, and then saw Dr. Waugh look at her in a panic and yell, “oh shit!”  Someone else said there were teeth on the floor when they were in the office.

Needless to say, I was extra discerning in choosing a doc for Nathan’s frenectomy.   I really lucked out, too, as the first guy I went to was amazing.  Dr. Bossong interacted with Nathan, joked with him, connected with him over “Star Wars,” and even took an extra 5 minutes at the end of the initial appointment to show Nathan the mask he’d be using and let him smell the different scents he could “flavor” the mask with.  I don’t know why some doctors that work with kids have no ability whatsoever to connect with them, but it’s amazing what a difference the simple act of making a young one feel understood and respected will do in taking away the scariness of these things.

The actual procedure was even more impressive than the consultation.  We were in and out in probably 20 minutes.  No joke.

Nathan LOVED his laughing gas.  He was chillin’ like a villain.  He had his hands up behind his head and was just looking around, relaxed and content.

I felt a brief bit of panic when I saw those novocaine needles – enormous just like I remembered them.  Why do they have to be so big??  But Dr. Bossong had patience and finesse, and with the help of the gas, Nathan didn’t even realize he’d gotten a couple shots under his tongue.

Joey and I were able to stay in the room for the whole surgery.  There was a little bit of blood, but Nathan was so chilled out, it didn’t bother me, and Joey was buried in his DS.

Dr. Bossong talked to Nathan throughout, in reassuring tones, and I think all of us were quite pleased with how fantastically smooth it went.

 

Frenectomy redemption!!!

When it was completely over, Nathan laid there, looking like he’d just smoked some Maui-Wowie or somethin’, and said, “can we do it again?”

Then he asked if we could take some laughing gas home with us.  Oh, if only, Nathan.  If on we could have ordered some “to go.”

We stopped at a 7-11 on the way home and I bought Nathan a cinnamon roll and a cherry sprite so big he could barely hold it.

We had about a 20 minute period on the way home where all gas and novocaine wore off, and Nathan became aware of the discomfort of the stitches and freaked out a little.  He was really emotional and I wonder if that had to do with coming down from the gas.  He begged me to take him back to the doctor so he could take the stitches out.  That was a little upsetting, but it was brief, and with some ibuprofen, he seemed to bounce back.

In fact, that kid didn’t have a second of downtime for the rest of the day.  At home, he proceeded to play with “Dubbie” and his collection of action figures, acting out all six “Star Wars” episodes with no seeming pain.  He was ready for regular food by dinner time.

Unfortunately, he was under the impression that this was to be a miracle procedure that would turn his slightly challenged speech around completely, with one little snip.  At one point he said “wabbit” for “rabbit” and then looked at me in frustration and said, “hey!  I thought I was supposed to be able to talk right, now!”

I explained the tongue untying might make it easier for him to tackle his “s” and “th” sounds, but he’d still need to work with Tom, his speech therapist.  He didn’t mind that idea too much.  He adores Tom!

So, that’s the jam on the lingual frenectomy.  Another “procedure” under my little brave boy’s belt, and hopefully the last for a little while.

Aside

On my first day of kindergarten, Ashley Horning shoved me out of the bike line and said, “out of my way, fatso.”  Being called fat, fatty, fatso, fatass, and any other such horizontally challenged slurs was a fairly regular thing through my entire school career, and the sting of those words always managed to give me a hard, painful lump in my throat, at the very least, if not a full out break down.

But at least I was the funny fat kid, right?  Except I didn’t always have the best filter (still a challenge to this day) so my wannabe stand up routines would sometimes result in gales of laughter and other times result in dirty looks and the feeling that certain people just wished I’d go away.  My best friend’s sister once told her she didn’t want me to come over anymore because I was so obnoxious and embarrassed her in front of her friends.

That one hurt.

In 6th grade, I was part of what was called GATE in our school district (Gifted and Talented Education).  Could they have come up with a more alienating and conceited sounding acronym, particularly, since most of us were just a little smart, but far from “gifted” and there were plenty of talented kids that didn’t qualify for GATE.    The result of segregating us into one classroom and giving us the task of producing the school-wide televised daily newscast was that the other two classes in the same grade HATED us.  They nicknamed us “The Brady Bunch.”  I know, ouch, right?  But, seriously, it was the venom and frequency with which they said it that made us all feel like losers when we should have felt accomplished.

I was sitting on the bus in 7th grade and one of the “popular” boys wanted to sit in that seat and said, “move, you fat, ugly, bitch!”

Early high school, I had these gladiator sandals that I loved, and my hair was kind of curly and unkempt.  Let’s be honest…I had more than my fair share of “awkward years.”  I remember seeing some cute boys on a cruise ship one time and as they passed me, one of them said, “she looked like Andre the Giant!”

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All through high school, I felt like a social relic.  A handful of students appreciated my unique wit, but the majority thought I was a big old weirdo and would call me “Woody Allen Lover,” and say, “Woody Allen sucks” every time they’d pass me, because I was obsessed with the Wood-man.    I can even pull out my yearbooks to this day and see multiple signatures that say, “Have a rad summer!  Woody Allen sucks!”

I got the chance to co-MC the annual lip sync at the end of the year, because I pulled a Sylvester Stallone and said, “if you want me to write the script, I have to star in the movie.”  This was a post that was usually manned by the popular and outgoing, so I was going to end my senior year with a bang – no more weirdo – and be accepted as a cool kid.   I wrote a script with variety hour/awards show style jokes and it was on.

I set up my parent’s video camera on a tripod in a prime spot at the bottom of the bleachers so that I could look back on this hey of days for the rest of my life; show my kids and grandkids my moment of glory.  When I got the tape in the VCR that night, my heart broke.  Every joke I told was responded to with loud jeers and boos from directly behind the camera.  The football player boys, several of whom I’d harbored unrequited crushes on for the previous four years, actually got in front of my camera at several points and said, “you suck!!  Woody Allen sucks!!”

I mean, I could go on.  Couldn’t we all?  Some people are less scathed, and some much more, sure, but we all get picked on by someone for something.  And let’s be honest.  We do the picking at times.  There were people who just annoyed me, got in my personal space, and I let them know through body language or actual words that I wasn’t a fan.  I made fun of a kid’s sandwich once, and he looked so hurt.  I remember saying to myself, “why am I doing this?” but I was on the train and I did it.  It’s that trickle down effect.

But for the most part, I was more of an activist for the picked on, and always had trouble understanding how and why people were so mean to each other.  I remember in middle school, I stood up to a group of people that were picking on this guy, Jack Hatfield, calling him “retard” and such.  Looking back, he was probably on the autism spectrum.  The bullies stopped and looked at me in surprise when I told them to leave him alone.  But Jack Hatfield broke the silence by turning to me and saying, “shut up, zit face.”  So much for that…

Now I get to watch the social dynamics unfold with my own children and I find myself thinking back to those instances when I felt bullied, and asking the question, “did this make me stronger?  Am I better for having had to endure these social trials?  Did it make me more resilient, thicker skinned, and more compassionate to my fellow man?”

Or…”if everyone had left me the fuck alone, would I be polishing my Oscar right now?”

Take out any personal pity or pride, and it is an interesting thing to ponder.  There are always these social hierarchies.  What makes one kid have this alpha status and the rest of the kids want to please him or her?  What makes the alphas and the pleasers have a need to keep the middle of the roaders and geeks in their place by putting them down?  Are they really afraid that their status is threatened, and the only defense is to make sure that others know they’ll never be cool enough to take over?

I admit, I’m wired a little more kum-bay-ya than that, and though I try to step out of my feelings in pontificating upon these great sociological puzzles, I do find myself getting a little cliché, in spite of myself, and Rodney King-ing it a bit:  “Can’t we all just get along?”

It’s a whole new thing when you’re watching your kids start to navigate these social situations, though the dynamics seem the same at the core.  This might be a simplification from someone who felt more often on the victim side than the assailant side, but it appears that  the meanest kids are still the coolest and other kids seem to want to bend over backwards to be in their good graces.

Nathan is a lot like me.  He seems to be looking around and saying, “what the heck is the deal here?”  He doesn’t understand why the nasty kids have more friends, and why the nasty kids are nasty, and why the nasty kids don’t want to be his friend.

Just about every day, he comes home with these stories of being wronged.  He isn’t constantly bereft and broken spirited, or anything.  He’s only cried on a few occasions.  But he is definitely bothered as he tells me things like one kid called him gross and pointed it out to the other kids when a little food accidentally fell out of his mouth at lunch, another kid ran away screaming from him on the playground when he said hi, another kid took his glove and threw it on the top of the gazebo on the playground, out of his reach, and the kids have taken to calling him “slow poke” as he struggles to keep up.

Up until recently, I’ve tried to quell Nathan’s consistent complaints by hearing him out, but keeping in mind the whole “your side, their side, the real side” adage.

Recently, my Maine BFF, Monica, and her husband, went out of town and we were watching her son, Antonio, for the week.  Now, Antonio’s a good kid, really, but we have had some issues with him being a little inconsistent in his friendship with Nathan.  It’s kind of like a John Hughs movie, or something.  They pal around like nobody’s business behind closed doors, but then Antonio gets out in public and he suddenly doesn’t want his rich friends to see him with this kid, Nathan, who’s traipsing around in his second hand/homemade clothes.  (“Pretty In Pink” analogy…did I really just cast my son as Molly Ringwald?  In actuality, I’d definitely see him as more of a future Duckie.)

Anyway, over the weekend, we were having a blast with Antonio, going to the skate park, the pet store, Cabela’s, renting movies, eating yummy food.  Antonio even commented in an unusually exuberant fashion, for him, that we were having fun!  It seemed that he and Nathan were bonding to an even deeper level.

And then Monday came along and I had to drop the boys off at school together.  Antonio jumped out of the car and ran off as fast as he could, looking back every 10 feet or so, clearly not wanting to be seen walking in with Nathan.

I was incensed, appalled and greatly pained for my little boy.  There was no other side to this.  This was a horrible diss  that I saw play out right in front of my own eyes, and it did not go unnoticed by Nathan, as he struggled to put his backpack on and get out of the car, physically unable to keep up with his buddy who wasn’t acting like much of a friend at the time.

As Nathan slowly made his way towards the school building, still trying to get his backpack on correctly, looking straight up hurt, I decided I needed a little help sorting this out and dealing with it.

I penned (or, rather, keyed) an email to Julie Nickerson, Nathan’s teacher. Julie’s absolutely fabulous, supportive, wonderful and I’ve developed a really good bond with her.  She’s also got two kids that are similar ages to mine, so she isn’t just insightful from the teacher’s perspective but really gets what it’s like to be a mom at this stage.   And did I mention she’s British?    I tried to petition the school board to let me re-enter 1st grade, myself, so I could listen to her read stories with that accent, but my request was denied in spite of the fact that my penmanship and art skills were confirmed to be at a six-year-old level.  But I digress…

I also CC’d  Chip Babineau, the social worker that see’s Nathan on a regular basis, as per his original IEP that was created when they thought he was autistic.  Fortunately, they didn’t pull this service from him, as I think it’s really helped Nathan in being able to communicate his feelings and deal with it when he’s picked.

As I said in my email to Julie and Chip:

I’m not oblivious to the fact that Nathan has those differences that will make him easy prey to kids that choose to be unkind, throughout his life.  I guess that’s why I’m coming to you both for advice.  Asking for the picking to stop completely would be very naive of me.  What I’m asking is how can Steve and I empower him through the advice we give him and the way we react to these stories?

I feel like we have a little window here where Steve and I are still somewhat omnipotent in Nathan’s eyes, and can impart wisdom that will actually help form the kind of person he’ll be, and stay with him forever.  In a few years, he’ll start to see our fallibility, as adolescents do, and our “wisdom” will surely fall on deaf ears.  We want to strike while the iron’s hot to give Nathan a leg up in the confidence department, and be able to weather the inevitable storms of growing up a little “different.”

Julie and Chip both jumped right in, and arranged a meeting.  Fortunately, Steve was able to take a Friday off and join us.  They both gave lots of insight in how we can tackle these things when Nathan comes to us, and also some good perspective on the fact that, as I suspected, Nathan’s personality has him making mountains out of molehills at times.  In fact, Julie even relayed a story of a kid excitedly sharing, “look Nathan!  I wrote number 248!” and Nathan responding with, “You’re being mean!”

At the same time, the social challenges facing Nathan that aren’t anything he can help were also acknowledged.   One of the things I really like about the curriculum that Chip uses is that he teaches about distinguishing the differences between friends, acquaintances and kids who aren’t friends, and that it’s perfectly alright to not be friends with everyone.  He’s like, “some kids aren’t nice to you, and if they’re not, you should stay far away from them.”  Right on.

I also know that both Julie and Chip have talked to the class and to individuals when warranted, regarding things done towards Nathan.  There’s no “kids will be kids and we’re too busy trying to deal with a million things so your kid’s going to have to toughen up.” They stay on top of the nonsense, and really have both gone to bat for Nathan on several occasions.  At the end of the meeting, they both said that they wanted me to definitely email them if Nathan comes home and relays any stories of real concern, so that they can follow up and investigate if it’s something they didn’t directly see.

It’s just really cool to know that I’m heard and respected, by these educational professionals that I quite look up to.  It’s been clear since Nathan started school that they’re all genuinely fond of him, but that has extended to me.  I mean, who isn’t comforted by the feeling of being liked?  And isn’t that the very essence of what makes being picked on so painful – the feeling of not being liked?

For my purposes as a mom, at this stage in my life, the team that supports Nathan at school are the ultimate “cool kids.”  They’re good people with good hearts and good intentions, and I feel like they genuinely like me and my son.  I’ve gotta say,  that makes the inner obnoxious, Woody Allen loving, fat kid in me feel like I turned out okay, and  my offspring will as well.

The Cool Kids

Is it gonna hurt?

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More computer issues thwarted my intentions to update immediately after Nathan’s EMG test at Boston Children’s Hospital.  And then came the whirlwind of the holidays, where we went to my sister, Michelle’s, house, and had a magical week and a half, filled with wonderful food, laughter, ice sculptures, baths in hot cocoa, and tremendous family bonding between the Hausmans, my parents, Steve, me and the boys.   My sister called it the “LaLoHa Christmas.”

Even the joint trip my father and I made to urgent care one night – he for bronchitis and me for an upper respiratory infection – had it’s laughs.  I’ll never forget the two of us coughing, moaning and groaning in our mutual misery as we tried to fill out the forms on the new fangled individual computers they passed out at this place, with my mom and sister giggling on the sidelines. 

As Dean Martin sang, “memories are made of this.”

But before that, we had Nathan’s EMG.   Joey seemed to be fathoming that his brother was going to have to go through something unpleasant that day, but he couldn’t mask his excitement at having a day trip ahead of us.  Nathan was nervous, but also, like me, has mixed feelings in these situations.  They’re scary and painful, yes, but it’s also fascinating to be in a medical environment and ask questions and interact with doctors and other medical professionals.  

Nathan’s main question on this particular day, to anyone he could ask a question to, from the receptionist, to the nurse, to the doctor, was:  “Is it gonna hurt?” 

He’d already asked me the same question about 45 times from the moment we woke up and while we drove the two hours to the hospital.  I couldn’t lie.  I said that it would probably hurt briefly, but not as bad as a shot because the needles were smaller.

We had a bit of good distracting excitement in the waiting room on the twelfth floor where the EMG’s were administered.  We looked out the window, with a view of many high-rise buildings, one of which was being worked on.  There was a big crane, or some such construction apparatus moving over the tops of the buildings.  Hanging from it was a four foot stuffed Santa Claus – obviously some construction worker’s amusing take on Christmas spirit.  The boys were thrilled!

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A Greek doctor with a fairly thick accent, but very pleasant demeanor, came and got us from the waiting room.

“Hi Nathan.  How are you doing today?”  he said.

“Is it gonna hurt?” Nathan replied.

We went into a small room with a reclining chair covered with a sheet for Nathan to sit on.  Joey sat in one of the chairs on the side, still and quiet as could be.  I think he was afraid if he made a peep, he’d become the patient.

Dr. Baklava (okay, that wasn’t his name, but I forgot it) offered me some coffee, which I think he was surprised I said “yes” to.  When he came back with it, it was ice cold.  He said, “it’s not fresh.”  Ya think?  But still, a nice gesture.

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“Okay, I’m just going to pull up your pant leg,” he said to Nathan.

“Is it gonna hurt?” Nathan said.

“No.  I’m just looking right now.”

An Asian woman came in with quite broken English, but a broad, friendly smile, and a clear interest in making Nathan comfortable.   I’m not exactly sure what her position was – if she was another doctor, or technician of some sort, but she basically just tried to keep Nathan still and answer his questions.  Of course, he only had one question.

“Is it gonna hurt?”

“No.  It-a not gonna hut?” she said.  “It like-a massage.  But only if you still.  If-a you move, it might hut.”

Well, this was not like-a any massage.  It appeared that the current they were putting through my little man’s body elicited in his muscles the equivalent of a cramp.  You could see the muscles contracting quick and hard, and he was clearly uncomfortable.

Meanwhile, this woman, gotta lover her, was trying to keep Nathan focused and calm, so she attempted to explain that if he was still, the signal would come up on the screen quickly and the test would be over that much faster.

To cheer Nathan on, every time the doctor placed the current giving instrument on Nathan’s leg, this woman would enthusiastically chant a slow building, “coming…coming…coming…coming…COMING!”

Dr. Baklava and I shared a silent discomfort.  It felt like we were listening to the soundtrack of an adult film entitled “The China Skindrome” or something.

This was all lost on the boys, of course, and Nathan continued to say only one thing every time something new was presented to him, through his grimaces and tears.

“Is it gonna hurt?”

Finally, the needle part came.  Fortunately, they only had to use one needle for one part of the test.  I was under the impression that there would be many needles, so this was a relief.  However, he jabbed that sucker right into Nathan’s shin and the answer to Nathan’s question “is it gonna hurt?” was clearly YES! 

They were having trouble getting the signal, so, as Nathan would later describe it, the doctor, “moved that needle around in my leg like it was a shifter on a car!”  That’s exactly what it looked like.  When he had no luck, he had to take the needle out and poke him again.  This was the worst moment – screams and tears and I couldn’t really physically comfort Nathan too much because I’d interfere with the test.  I held his hand and told him it was almost over, and before long, it was.

The whole test, which I was told would take an hour, couldn’t have been more than 15 minutes.

Dr. Kang, the neurologist was then called, and came to see us.  He said there was nothing wrong as far as that test saw, and now he was a little stuck.   He started talking about some deeper genetic tests we could do, but said they were very expensive, and it was a reach that they would turn anything up for us.  He asked if Nathan was improving at all and I told him, “always.” 

He was pleasantly surprised.

I said, “that’s the thing.  There’s nothing progressive about this.  He only gets better with his continued efforts, therapies and just general development.”

Dr. Kang said, “well, sometimes that’s what we need to focus on.  In the end, continued improvement is much more important than a diagnosis.”

I think I like this guy.

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I told him my story about Nathan’s pediatrician bragging about his abilities to predict the diseases on “Mystery Diagnosis,” but having no idea what was up with Nathan.

Both doctors chuckled in disbelief at Dr. Britton’s egotistical audacity, and I felt very heard and respected.  Dr. Kang said, “well, I don’t mind telling you, I really don’t know what’s going on.  But if he’s improving, why don’t we give it another 6 months and then we’ll see you back here then, and figure out where we want to go from there.”

So, we have a half a year reprieve with no tests, procedures or appointments.

But wait, what’s this?   Nathan went to the dentist two days ago for a check up, and as she’s examining his mouth, she says, “he’s tongue tied!”  I didn’t know that was an actual medical condition. 

Apparently, the skin underneath his tongue is extra thick, making it difficult to stick his tongue all the way out, which is, according to the dentist, likely the cause of any speech challenges that he’s been having.  He has a fairly strong lisp, and difficulties with several sounds that he goes to a speech therapist for.  The dentist seemed to think with a lingual frenectomy, where they thin out that skin, his speech issues will clear right up.

Who knew?

Steve and I aren’t excited about  more pain for our boy, and a sure barrage of “is it gonna hurts?” to which I can only answer, yes, it is gonna hurt a little.  But as Steve said, “finally…something.”  Finally a solution to something that will make life a little easier for Nathan.

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EMG Day

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Feeling a bit alone this morning.

This is the reality that Steve and I chose.  We came to our decision mutually, and quickly, but not lightly.   Steve had to move for work, but temporarily, to the place he was going to be.  The groundwork laid at Nathan’s school with the amazing team of people that know and love him – teachers, ed techs, specialists – as we continue to try and figure out the scope of what his needs are going to be, long term, would be unlikely to duplicate in the course of one school year, only to move him again.  We agreed to the great challenge of a physical separation from Steve for this reason.

My loneliness is nothing of my husband’s fault, and if you were in my house at this very moment, you’d see that it has nothing to do with quiet or solitude.  My house is only still when the children are sleeping, and even then, they twitch, toss, turn and make noise throughout the night.    I’m very rarely alone, but lonely right now, nevertheless.

I have to take Nathan toBostonthis morning, with Joey in tow, to get an EMG.

Here’s the description of the procedure from Wikipedia:

To perform intramuscular EMG, a needle electrode or a needle containing two fine-wire electrodes is inserted through the skin into the muscle tissue. A trained professional (such as a neurologist,physiatristchiropractor, or physical therapist) observes the electrical activity while inserting the electrode. The insertional activity provides valuable information about the state of the muscle and its innervating nerve. Normal muscles at rest make certain, normal electrical signals when the needle is inserted into them. Then the electrical activity when the muscle is at rest is studied. Abnormal spontaneous activity might indicate some nerve and/or muscle damage. Then the patient is asked to contract the muscle smoothly. The shape, size, and frequency of the resulting motor unit potentials are judged. Then the electrode is retracted a few millimeters, and again the activity is analyzed until at least 10–20 units have been collected. Each electrode track gives only a very local picture of the activity of the whole muscle. Because skeletal muscles differ in the inner structure, the electrode has to be placed at various locations to obtain an accurate study.

Sounds like a party, right?

Well, Nathan is aware of the basics of what is happening, and he’s acting out.  He’s also acting out as he always does after Steve has visited for the weekend.  The times with Steve, which end up being about every other weekend,  are amazing for all of us.  We enjoy every second.  I’m not saying absence has made our hearts grow fonder, but the preciousness of our time together is definitely enhancing our enjoyment of one another’s company.

But the goodbyes are so hard.

So I have one kid acting like an animal, disrespecting me, pig penning up my house, smacking around his brother, and I’m trying to hold it together and do my mom job, knowing what I’m going to be watching him go through in a few hours.

I’ve got another kid that loves his brother and, at 4 ½, is starting to put stuff together much more, and is both fascinated and concerned about Nathan’s pending test.

Two kids to keep calm.  Trying to stay calm myself.  These are the moments when having your spouse in the same room, or even the same state, are a real bonus.

I miss my husband!!  Lexapro and Ativan will help, but he’s a better hugger.

Back

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Where the heck have I been?

A part of me wants to default to the usual excuses – been super busy, crazy life changes (Steve is working in NY for the year but I stayed here in Maine with the boys so Nathan could continue the great services he gets at his school),  computer issues, blah blah blah…

Yes, all these things happened, but they’re not why I haven’t written a blog in 5 months!  Oh gosh, has it been that long?

I guess I just needed some time off from reflecting on this.  We got the results on the Freidreich’s Ataxia  –  negative, so that was a relief.  We’ve had more tests, but are no closer to a diagnosis.  Nathan continues to develop, doing well in first grade, still a little behind the majority of his peers, but seemingly catching up, and certainly making forward progress.

We spent a big part of our summer at my sister Michelle’s house inMaryland, as Steve started training with the new gig.  Nathan and Joey both spent hours upon hours jumping on the big trampoline, playing Nerf guns with their cousin Ben and even playing videogames.

Nathan wasn’t necessarily keeping up with Tommy and Ben on the XBox, but watching my kid push those buttons and levers, having a sense of what the cause and effect of the game was, and comprehending and enjoying all of that fine motor activity, was really cool to see.

Ben also introduced us to the Kinect game called “Fruit Ninja” where the boys used their full bodies to slice fruit in half.  Nathan was doing it.  He got it.

He did fall down the long stairs into the basement once.  But, gotta love that kid as he went into a stuntman quality relaxed roll, landed at the bottom, and started laughing and saying “that was cool!  I wanna do that again!”

We made an appointment with a neurologist at Boston Children’s Hospital once the Maine guy ran out of ideas.  We went there in August.  What a place!!  It looked like a really nice airport or something.  It was bright and colorful, with a huge sprawling lobby full of fun artwork and big, beautiful fish tanks, stairs, escalators, glass elevators, a CVS right when you walk in, as well as a Au Bon Pain restaurant filling the air with comforting smells of coffee and decadent pastries.  It’s not an unpleasant place to be.  There’s nothing sterile or scary about it.

And in going to a place like that, a mom like me that might get down from time to time, gets perspective.  When you see really, really, really sick kids, and you look over at your little boy who is strong, sturdy, has no physical deformations, can eat food without a feeding tube, can go to the bathroom by himself, can walk, can run  and can jump, even if it looks a little different than  most kids his age, can write and draw even if it’s not terribly legible…I’m not trying to demean my own challenges as a mom watching her child struggle to be like the norm, but there are levels of difficulty in this life, and walking through that hospital made me realize we are at a pretty minimal level of difficulty at this point.

The neurologist we saw, Dr. Kang, was nice and thorough.  He took a complete history and typed everything I said.  A week later he sent us a report in the mail, and he really was paying attention.  He got it all.  I was impressed.

He did a full exam of Nathan, checking muscle tone, having him do things like touching the doctors finger then touching his own nose over and over.  Dr. Kang got him off the table, and had him run down the hall.  At that point, the doc turned to me and said, “does he always run like that?”  Yes, doctor, that odd sideways twinkle-toesy gallop is a big reason why we’re here.

This doctor noticed some lack of feeling on the bottom of Nathan’s feet, so he decided to order a spinal MRI to check for a tethered spinal cord.  Once again, Steve and I found ourselves hoping for something that ordinarily parents wouldn’t hope for.  Tethered spinal cord meant a little minor arthroscopic surgery and we were set – done with this whole thing.  Nathan would, in a sense, be “fixed” with a little point of a laser.  How amazing would that be?

Still, I think our instincts told us it would not be that simple and that this had nothing to do with his spine.  I woke up at 3:30am the morning of the MRI, drove my boy the two hours toBoston, leaving Joey with my friend Monica, and got him checked in.  He was to be sedated again, because kids can’t stay still that long, and that tube they keep you in is enough to make the coolest of cucumbers feel a little claustrophobic.

Nathan has a way with the older ladies.  He’s very inquisitive in a kind of neat way.  He likes to share stories and he makes an effort to connect on some level.  The nurses loved him.

He started to get a little tense, though, as we got further in on the process and found out they were going to start with an IV instead of gas.  The last MRI we had started with the gas so he never even knew he had an IV.  AtBoston, the idea was to use as little medication as possible, so they were trying avoid the gas altogether.  Unfortunately, the nurse that was already very fond of him, had trouble getting the IV in.  Tears pooling in her eyes, she went to get the other nurse.  “I won’t stick him twice!” she said, poor thing.  “I refuse!”

The other nurse came in, assuring us that the first nurse is awesome at IV’s and this was just a fluke thing.  And then, she stuck him, and nothing couldn’t get flow either.  Nathan was wailing  The new nurse was crying now.  I was crying.  What a scene!!

They brought the anesthesiologist in and he kind of reminded me of  Hugh Laurie.  He goes, “alright.  Let’s stop this madness!”

Gas it was.  Nathan was up on the table in his little gown, and I was instructed to look at him and help hold him up.  We stared at each other and I gave him smiles and words of encouragement as they kept turning the gas up a little at a time.  Finally, his eyes started to droop and his body went limp, and he was out.

“Start slow with food,” they instructed me in the recovery room as they got ready to release him.  “Clear liquids and maybe some crackers today, and then slowly introduce solid food tomorrow morning.”

We were in the Sonic drive thru 45 minutes later, and after a cheeseburger and fries, Nathan said, “still hungry, mom!”  Thankfully, there were no issues with him keeping that down and eating lots more the rest of the day, my little bottomless pit.  He also had none of the tiredness and lethargy they predicted and was just normal old energetic Nathan.  He’s a resilient boy.

Two days later I got a voicemail:  “Everything’s fine, but we did want to talk to you about the MRI for Nathan.”

Everything’s fine?  Then why do you need to talk to me??

As it turned out, they found something but say it has nothing to do with the ataxia.  He has slight degenerative disc disease of the cervical spine.  When pressed further, she read directly from the report, “mild tears and bulges in the discs” and said Dr. Kang would be sending a copy to Nathan’s pediatrician.

What????

So now we have to take him to an orthopedist for this whole separate issue, as neither the neurolologist, nor Nathan’s pediatrician had much to offer in the way of an answer, but they both agreed that disc issues in a 6-year-old boy are unusual.

I would counter, 6-year-olds getting spinal MRI’s is unusual as well, so could this new issue be something that might be found on more 6-year-olds that will end up having disc issues in their teens and 20’s, the way my sister randomly did?  Just a thought.  He doesn’t have any pain, so we never would have pursued a spinal MRI if not for the other issue, so who knows?

Or could this fall under the umbrella of something?  I’m always looking for that umbrella ella ella,  like I’m Rihanna.  Does my son have a cluster of symptoms pointing to one thing?  Or several unrelated issues?

I’ll tell you what ticked me off royally, though…when I was talking to said pediatrician about the spinal results, he had a resident working with him that day.  Cute, cute young doctor, that looked like he was in high school.  Have I gotten that old??

Nathan’s doctor was acting big and bad in front of the new dog, though he had nothing to offer about the MRI results other than to say that it would be highly unlikely that the degeneration was a result of injuries sustained from the ataxia (i.e. falling down the stairs and such, over the years).  I mentioned that Nathan’s case was like an episode of “Mystery Diagnosis.”  He turned to the young doc and said, “I love that show.  I always get the diagnosis within the first 3 minutes.  I turn to my wife and say ‘it’s gonna be such and such’ and I’m always right.’”

He turned back to me and I said, “well, then…if that’s the case…what’s Nathan’s diagnosis?”

He got a little pale and stuttered, “well, I-I-I’m not sure…I’d have to look at the…”  blah blah blah.  Subject change.  Awkward shift in the vibe of the room.  Sorry dude, but seriously?  Had to call you out.  We’ve been seeing you for 3 plus years now; way more than 3 minutes.

But I digress.

Next up – an EMG at Boston Children’s and an appointment with an orthopedist.  The EMG will consist of acupuncture sized needles and electrodes stimulating the skeletal muscles to test their response.  Nathan will be fully awake, and surely fully freaked out for this one.  At this point, I have no expectations of findings.  I’m not even sure what they’re looking for.  The doctor mentioned something about “atypical Freidrich’s Ataxia” in his report.  Forget that noise, doc.  Not sure what all that entails, but I’m pretty sure we’re not interested in anything Mr. Freidrich has to offer, and since “typical” was already ruled out, hopefully we can cross “atypical” off the list, as that would likely be a worst case diagnosis.

Meanwhile, Nathan is doing well in school, but the rate at which he grows and changes and becomes aware of himself and those around him is astounding.  Last year, in kindergarten, he seemed kind of clueless.  He was fine and doing fine in spite of being a little behind.

Tonight, he had homework.  He had to write something that reminded him of night.  He chose “owls” and wrote it on his own, with a little help on the spelling for me, but his reading and spelling skills are coming along quite well.  He wrote his name in the upper left corner when I asked him to.  Then I told him how to write the date.

He got really frustrated.  His eleven wasn’t right in his mind, though I thought it was legible.  He kept trying to rewrite it to make it perfect, but then he had four 11’s in a row, and his space cadet mom had handed him a pen, so there was no erasing.  I told him he should stop rewriting and stick with what he had and write the rest of the date.  At that point, between my telling him to stop and the fact that he had no more room to write the rest, he melted down.  He was tired and hungry, which contributed to the sensitivity, but he was also so aware of his deficiencies and so frustrated.  I was surprised.  I hadn’t seen this from him before.

It made me remember that feeling that I was lucky enough to only have a handful of times in my school career.  It was how I felt sometimes with 8th grade algebra, or geometry in 10th grade, taught by a pervy, stinky, thick accented Italian priest with the most astoundingly ridiculous wrap around comb over you’ve ever seen.  Frustration!  A feeling of being trapped.  Not knowing what to do and wanting nothing more than to not. be where you are doing what you’re doing.  Stuck.  Lost.

I wonder how much more of that Nathan will face in his school career.  I don’t feel sorry for him or anything, because I know he’s got parents that will work with him, and make sure he’s always getting whatever extra help he’ll need.  We’ll always fight to make sure he’s getting all the services possible from whatever school he’s in.   And now that I’ve been volunteering in his classroom, I can see the gamut these kids run.  Some have better penmanship than me.  Some are about at the same place as Nathan.

It was just more interesting to have that moment of revisiting a feeling, through my son, that I hadn’t felt in so many years.

I hugged him as he cried in frustration, and I said, “have you seen my writing, Nathan?  I’m afraid I didn’t give you the best penmanship genes.  That’s why I learned to type at a young age and you can do that, too.”  He blinked through his tears, calming down, realization on his face.  “Really?”

“And you have lots of strengths, kiddo,” I continued.

“Like what?” he asked.

“Like storytelling.  Your penmanship might be a struggle, but you’re going to be an amazing writer.  You’re smart and funny and you pay attention to all the details.”

He lit up, and tackled me with a hard hug.

“Thanks mom,” he said.

I don’t think it’s always going to be that easy to talk him out of a moment like that, but it just illustrates Nathan’s nature.  He’s a happy kid and he’s never wallowed in his challenges.   What a great role model he is for me!

I continue to learn at least as much from being a mom as I can possibly teach my children as a mom.

Lost

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The MRI went off without a hitch.  It was an intense day, with them putting Nathan under full anesthesia so that he wouldn’t move.  We did the whole drill – no food or drink after midnight, checked into the hospital early, waited, consulted with a nurse, then an anesthesiologist.  Nathan was crazy nervous until they gave him this magic potion called verced that I wish I could carry in my purse.  It made him all loosey goosey and funny, kind of like a happy little drunk.  All was well from that point on.  When he woke up, he couldn’t believe it was over.   He perseverated for a good half hour, asking, “did I get the xray yet?” over and over and over again, as if for the first time.  But by 3pm that afternoon, he was pretty much back to himself.

So, nearly a week later, the results are in.  Nathan’s MRI is normal.

Normal?  This is good, right?  So why do Steve and I both feel like crying?

Because we were ready.  We were ready for that answer.  Cerebral palsy started to make sense to us.  We started looking at this MRI as just a formality to confirm what we were sure was going to be true.

No, CP isn’t something a parent generally hopes for, but the alternatives the neurologist had to offer were worse, and it just seemed such a better match than autism.  With a diagnosis, it  felt like we could move forward – do more research, join support groups if we wanted to.  Learn.  Help our son get better.  Maybe never cure him, but we’d know how to help, or where to go to get help.

Now, the neurologist is ready to kick us to the curb.  “With a normal MRI,” the nurse said to me, “the doctor doesn’t think a follow up is necessary?”

Are you kidding me?  You’re not going to give us any other possibilities?  My son has intention tremors when he attempts fine motor tasks and falls when a light wind blows on him.  How is this not somehow under the umbrella of neurology?  You’ve got nothing for me?

They still have some labs they’re waiting on for Friedreich’s Ataxia, the super scary disease that he said was most likely not the case with Nathan because there’s almost always a family history.

Here’s the symptoms, as seen on Wikipedia:

Symptoms typically begin sometime between the ages of 5 to 15 years, but in Late Onset FA may occur in the 20s or 30s. Symptoms include any combination, but not necessarily all, of the following:

 

Wikipedia goes on to say the median death with this disease is 35 years of age.   Of course, now that CP is out, I am considering this for the first time, and it’s scary as hell.  However, when I look at those symptoms, I don’t see much of a match.  Nathan’s symptoms have been from birth – no sudden recent onset.    He is said to have low muscle tone, but he’s not weak.   He doesn’t have slurred speech, vision or hearing impairments, and there was never a loss in coordination, since there was such little coordination to begin with.  Rather, his skills have gotten better over the years with practice and therapy.  No curvature of the spine.  I don’t believe he has high plantar arches.  No diabetes and no heart disorders.  I wouldn’t be me if I didn’t at least prepare myself for this possibility by doing the little research I have so there is some awareness, but I will still be floored if he has this, as I don’t see anything of Nathan when I look at that list.

The nurse was unaware of where we were in our process, and basically started suggesting I look into physical therapy or something, and consult with the pediatrician.  In other words, square one.  I explained to her we’ve been doing that for years, spent the last year thinking he was autistic, and now were going down the neurological route.  I said that I really felt that we needed to at least get in to see the doctor so that he could recommend where we go from here.  “I’m feeling a little lost,” I told her.  She seemed to get it.  She’s going to talk to him and call me back.  But I’m now losing hope that he’ll have much to offer me beyond “developmental delay,” “the brain is very complex and we really know very little about it,” and “keep doing what you’re doing.”

We have become a walking, talking, real life episode of “Mystery Diagnosis.”