A Beautiful Day

Special

I can't begin to tell you all how much our lives have turned around for the better since Smacky's return to the integrated preschool and onset of OT and PT services.  His disposition, energy, and outlook have improved so much in such a relatively short time.  Part of this we attribute to his newly-found eyesight, but I believe most came from the positive influence from his new school and friends. 

Last weekend we attended the birthday party of one of his classmates...all the students were invited along with their siblings.  Smacky is one of ten in his class and because it's so small, the parents all know each other and all the kids fairly well.  We've become a fairly tight group, us parents...as with our kids in the classroom, there is an unspoken policy of compassion and inclusion and it feels, well, special.  Parents of kids with needs have been down a different road than the mainstream, and therefore we get each other and connect quite easily.  Anyway, back to the party - as usual, I was inwardly dreading attending as historically, Smacky just hates loud rooms with too many people and colors and food and stuff going on, and I'm usually the parent on the sidelines with him while being asked a dozen times albeit very nicely what's wrong with him?  Is he okay?  And because there's no simple explanation, and because really, I'm under no obligation to explain anything anyway, and the first question itself implies his behavior as negative, I smile and wave while I hold him and assure him that soon, honey, soon it will be over and we can go home.  And for the most part, this party was no different in that respect, except for the fact that no one blinked an eye at his standoffishness.  Instead, I was asked if there was anything we can do to help him be more comfortable.  No one pressured him to "come sit" or "wear this hat"...they all knew - they've all been there in some vein.  And so some moms came over to join us, away from the loud table.  We parents talked about the spectrum, food allergies, sensory issues and delays without reservation nor judgment nor apology nor sanctimony.  We traded experiences and advice.  We talked about the emotions and challenges.  And for the first time in a long time, I felt safe to talk about my son to people other than my closest friends (or family) without fear - which frankly, mostly, is the fear of him being ostracized once people learn he is different or delayed or challenged or whatever he is.  And until I get over that - until I learn to handle that piece more confidently and effectively -  this group, these people, are a godsend.  Because they know that despite his issues, Smacky, like their sons and daughters, is just as beautiful and worthy as any typical kid.  Here, with them, we are safe to be who we are.  And that brings with it a breathtaking relief.  We are fortunate to have found a place, a tribe, a comfort zone, with people who are very cool and evolved.  Yay for us.

Tomorrow?  We've got a birthday party to attend (not involving his class but rather the son of an old friend) at a certain pizza facility with an indoor arcade whose logo involves a large mouse...I am honestly thinking of buying him earplugs to help him feel more at ease.  Whatever the case, we need to keep pushing gentle exposure to these situations to help him acclimate...and it will be good practice for me to remain calm and unflustered when he starts screaming bloody murder when they bring out the cake. S and the twins are coming, so that might help calm him.  We'll see.  Wish us luck.

Oh, and speaking of cake, we found out today that Smacky will now start seeing his very own eating specialist which will help us determine if his severely limited diet is rooted in behavior or neurology.  This kid's amassing quite a team. 

 

 

Random Moments

This morning we had a school team meeting about Smacky to get an update on the PT's assessment and progress. The meetings now are shorter and to the point - the psych, OT, PT, and coordinator were there.  His teacher's car broke down, so she couldn't make it, but we got a lot done. 

In short, they've all seen some improvement except for the psych, who asked if it would be okay to include Smacky in his social-skill groups to help him grow in that area.  Right now it appears as if he's doing very well with his peers, however because he has a tendency to be so impulsive lately (a huge switch from his former ubercautiousness), we want to watch to be sure he's not just acting out the motions in order to get to a result (i.e. charming the socks off the kids around the rice table so that he can get a place there to play, vs. enjoying sharing and real friendship).  I welcome this approach and am so glad Mr. M is on top of it.  We batted around the A word a bit today and all agreed that whatever a diagnosis (should there be one) brings, he's still the same Smacky and we wouldn't change much with respect to our current approach.  The OT is especially concerned as apparently he's been fairly uncooperative with her and slower to make progress, so any social reinforcement will be helpful.  

Later on I took Smacky to have his eyeglasses adjusted.  When leaving the opthamologist's office, while running down the long hallway and after falling twice, he turned a corner toward the elevators and randomly asked a man and his young son where are you two off to?  They of course starting laughing and told him UP.  He yelled back as he started running again: GOOD JOB!   Then, while in the parking garage, enjoying the echo his voice made, Smacky began randomly spelling words:  J-U-M-P JUMP!  B-L-U-E BLUE!  G-O GO GO GO!!!  He was happy, and it was cute.  And it made all the other stuff seem stupid to worry about.

Sigh.  I think today I realized that this has no end. There is no point in parenting when I will be able to sit back and say AH, done.  I mean, I always kind of knew that but living it gives it an entirely different nuance.   Like it or not, my world is pushing me toward one day at a time...teaching me, giving me exactly what I need to learn to live in and enjoy the moments as they come.  

State of the union

Have I mentioned lately that I'm still in therapy?  And that I'm making great strides in understanding what drives my mood and behavior?  The work we've been doing has been intense and, at times, very difficult, but I am quite better off for having processed it.  I have found a therapist who is truly an amazing, smart woman who is not only an accomplished professional but gets me (hell, she even sews and knits) and that really, really helps. She's opened my mind and encourages me to go deep - to really explore ideas and feelings - and also has me on a sort of 12-step program, only I don't drink or do drugs.  Instead, I am addicted to a semblance of control over things, and when there are things I can't "fix," I resort to my "original hurt."  Which, in short, means I can become super insecure and confused and feel unlovable when life forces me into situations where I'm not the one calling the shots or making things happen.  It has a lot to do with not being able to really trust people, which was hardwired into me when I was a little girl.

And I don't tell you this because I want you to feel sorry for me - oh no - I share rather because it may be helpful to some of you and I am quite happy that I'm making all these discoveries.  It's making me better...you can't change the past but you can change the way you deal with it.  This is long overdue.  

June is coming up in a few months and there is a small fear in me that the warmer weather - springtime - will trigger some postpartum PTSD flashbacks again, like last year.  These flashbacks are horrible - I can only liken them to perhaps a panic attack (which I've never had, but have witnessed and have several close friends who've suffered them) in that it really physically feels like I'm going through the delivery aftermath all over again.  The worst ones are ICU-related, though the one when I'm waking up from surgery too early runs a very close second.  Last week I had to have a CT scan for some shortness of breath (PNH makes me prone to clots so my hematologist errs on the side of caution whenever I have breathing complaints, especially to rule out a pulmonary embolism) - anyway, the scan itself mentally brought me back to THAT TIME, and I must say I did an excellent job of avoiding a meltdown.  I wanted to scream and resist but instead I breathed and thought of good things and made it through with a smile, and that says something because I frickin' HATE CT scans - if you've ever had to endure the dye, you know why ;-).  My lungs came back negative but sneaky Dr. Cutting Edge threw in a whole body scan while I was there and they found a softball-sized cyst on my ovary.  Long story short - one ultrasound later, the cyst was going down and is functional vs. complex, so it should go away on its own.  I feel better.  And I feel good knowing that I'm at the point where the smells/procedures/IVs/beeps of a hospital aren't freaking me out like they did perhaps less than a year ago.  I'm getting better.  

***

In other news, I received two orthopedic-related reports this week: one from Smacky's ortho who diagnosed the femoral anterversion, and the other from his physical therapist at the school.  It's amazing how differently two professionals can see the same situation, and, as far as I'm concerned, they're both on equal ground given the fact that the PT spends several hours a week with him and the doc, though more qualified to expound on medical issues, saw him once for a mere 15 minutes. 

In short, the doc mentioned autism three times in his report...though not all gloom and doom, he basically deferred the issue as one that needs the attention of developmental experts.  The PT, on the other hand, raved about how Smacky loves Gross Motor Group and is a quick study.  She clearly adores him and is very optimistic about his prognosis, even if he were to receive only minimal intervention.  She feels that he is the type of kid who, with the right attention, can easily overcome his developmental deficits.  She is so darn rosy about his future I sincerely want to HUG her and let her come live here and stay in the guest room.  I'd cook for her while she kept telling me how Smacky is usually the first to volunteer to try new therapy activities and I'd bake her her favorite cake as she raved about his remarkable ability to JUMP (with two feet! at the same time!) on his own or how he's THIS CLOSE to alternating feet while descending stairs. This PT has done wonders for him in a relatively short time and therefore, she's got some street cred with me.  I'm learning that the school, for legal and financial reasons, certainly leans toward minimalizing developmental issues so I need to take what she says with some salt, but damn if Ms. PT isn't the bright spot in my day lately.  She's got me so pumped that I up and signed Mr. Smacky up for some swimming lessons.  And before you think I'm dumber than a bag of hammers, know that long ago I nominated the hubs to be The One in Charge of Teaching the Boys to Swim...what better way to indoctrinate him than with sensory-challenged Mr. Smacky?  Heh.  I'm kidding...they'll have a ball (I hope).

***

J now says "butterfly" and "go downstairs."  Z has been throwing A LOT of hissy fits involving purple-faced screaming when he doesn't get his way.  And Smacky is urgently trying to master the art of the knock knock joke.  If you have any good ones, please leave a comment!

Happy weekend!

The only way out is through

Now and then I look at Smacky and find it hard to believe how fast he's growing.  Since the acquisition of his eyeglasses, he's seemed to emerge from his proverbial shell and is regaling us with language...and by that I don't mean he hasn't been speaking all along, because he has.  What's happened is that his syntax - his ability to differentiate tenses - along with overall pronunciation, has suddenly and dramatically improved. He's also demonstrating far more involvement and investment in conversations than ever before.  What I'm guessing is that one or two things has happened : 1) his newfound ability to see has allowed him to observe our lips and mouths forming sounds more clearly, and 2) since he now can see without effort, he can relax on the vision front and developmentally work on other areas, such as communication.  Whatever the case, we are enjoying it immensely...in a way, we are getting to know his true personality, which apparently is far more unencumbered and social than we previously believed.  In light of all that's been going on with him, this brings us joy.

Two days ago I received in the mail a confirmation letter from the developmental pediatric team who will be screening Smacky for autism and developmental issues (it turned out to be a four and a half month wait).  The appointment dates are April 20th and the 27th and are expected to last for 5 hours each...I've been asked to bring food and drinks for him.  I'm excited that it's finally here and that perhaps we'll finally nail down everything we need to be doing for our guy.  Along with talking to friends with firsthand knowledge, I've been doing quite a bit of on-line research on autism and I'll be honest - with what's going on with him, it's hard to believe he doesn't have it.  It's been a bitter pill, this potential diagnosis...deep down I know he's got something, and I've known for quite some time now.  Lots of future scenarios play out in my mind; most involve him feeling hurt and awkward immersed in a society that doesn't understand him.  It makes me heartsick to think about.  Where I take comfort though is that whatever it is, it's mild, and the fact that he's been making friends at his new school and hugging his brothers are very good signs.  Even last week, when he caught me wiping a tear in a moment of frustration, he asked Mommy, what's wrong?   That's good, right? 

If I had to guess what's going on with him, it's either hyperlexia or Aspbergers or somewhere in between. 

Don't get me wrong- I would LOVE to be told he's just got a few developmental delays and should be right as rain in a few years...believe me.  But just when I begin to think eh, I'm worrying for nothing, he ignores being spoken to.  Or freaks out about a noise.  Or refuses to join other kids at a birthday party. Or flaps his hands and hums.  And I'm back to square one.

What's been evolving is my public response to it all - sometimes, especially when I get the quizzical looks from other moms, especially when he's being extreme, I have to fight the urge to explain...he's just having a bad day, I'll say.  Inside I'm saying DEAR LORD please stop this insane meltdown over being asked to put on a party hat and sing happy birthday to Timmy and it would really help if you could get him to at least sit up or at least not hit me in the face when I'm holding his writing, hurting, scared and confused body while the entire birthday party is watching us with their mouths wide open because no one here has quite seen a tantrum like this before and they don't understand why a stupid hat and a colorful, crowded, loud room would freak him out so much.  And while you're at it, could you see if you couldn't get him to just try a piece of cake?  Because he hasn't eaten anything but waffles and peanut butter in, well, years.  Oh, and when we go to put on our coats at the end, could you make sure he isn't bumped or forced to walk on the "hard" floor without his shoes?  Because that will only start this all over again. Thanks.

I understand though.  I get it now.  I just need to get us through it.  Robert Frost once said, the only way out is through it.  And I am deep in the through people.  Deep.  Whether there's an out is anyone's guess at this point, but we'll see.  And what I'm finding most interesting of all is that despite all this - despite all the worry, the inconvenience, the struggle - I find my son to be absolutely perfect the way he is.  I look at him when he's sleeping, with his his long thick eyelashes and porcelain skin, with his thick shiny duck-hair and perfectly shaped-eyebrows - peaceful, curled up in the crook of my arm, and all I think is God, baby, I'm going to make this as right as I can for you and won't ever stop. 

Things we're learning

Who knew?  When Smacky complained that he was dizzy (or, more precisely, that he feels "dangerous") and that the walls were closing in on him, I thought about anemia.  Or inner-ear balance/coordination problems.  As unlikely as it seems, it turns out his vision could be the culprit.  On Tuesday we found out that he needs eyeglasses - S and I sat in the exam room with him and listened attentively as he read the letters on the wall aloud as they were presented.  When his right eye was covered, he consistently tried to move the patch away.  When the doctor resisted and kept the patch there, he couldn't read the letters.  His left eye is markedly weaker than the right, and because of that, his depth perception isn't where it should be. 

DUH.  No wonder he's afraid of stairs...or heights...or moving too quickly.  Poor guy hasn't been able to see.

Photo of the bespectacled Mr. Handsome forthcoming, once he lets me take it.  

below (taken with the Blackberry).

One step forward, one step back

Hearing test yesterday?  No hearing issues, need follow up with ENT.  Check

Moving right along, today we had an orthopedic consult.  Back in the day we had Smacky's hips tested for alignment and we passed with flying colors.  I figured today we'd get the usual "developmental delay" diagnosis and receive a script for a course of PT to address the toe-walking.  We went in today's appointment feeling good - even cocky - Smacky alternated feet on two of the steps on the walk to the hospital from the parking garage and even let his heel touch the ground a few times.  I was positive this meeting would likely reaffirm what we already knew and get us that much closer to more therapies.

Ah, yes.  If only.

As it turns out, Smacky's got a fairly strong case of femoral anteversion going on -  it will correct somewhat as he gets older but with the degree of rotation he's got going on right now,  it is likely he will need continual corrective therapy throughout his life.  Surgery will be considered later if it doesn't lessen enough to allow him some stability.  We talked about braces and casts and that they may be considered (was also informed that an old-school ortho would send him for braces today), but for now it's full-speed ahead with a stringent PT program.   The ortho's other recommendation us as parents? Enroll him in ballet class. 

Interestingly, this condition, along with all of Smacky's other quirks and gut issues and hand flapping and anxiety, is a classic sign of autism.  The ortho informed me of such and began explaining that yes, Smacky's social skills are apparently strong, but, was I aware that the spectrum is rather large?  And that physicians generally like to have one diagnosis with which to explain a host of seemingly dissimilar symptoms and in our case, autism certainly stands out.  NOT THAT HE THINKS HE HAS IT, he was quick to explain, but it would explain a lot. 

F*ck.  There's that damn A word again.  

I informed Dr. Ortho that Smacky has indeed been screened and that his current medical providers and therapists have been placed on high alert to watch for anything that might push any more of his test results into the red zone.  Dr. Ortho was satisfied with this and asked that we return in 4 months.  

My poor little guy... no wonder he hobbles.  After we left the appointment I broke into a sob for a bit - and now I'm simply trying to convince S that ballet wouldn't be so bad.