Being Ahead. Being Behind. Wishing To Be In The Middle Or At Least Stay In Denial.

It’s been one of those weeks.  Those weeks where a lot comes at you and processing it all takes a toll.   I am, the overwhelming majority of the time, what the Myers-Briggs Indicator would call a thinker.   I function by thinking, versus feeling.  Everything is analyzed and thought out, decisions are never ever made rashly, my mind moves a mile a minute scanning and processing data and then acting accordingly.   But every now and then a little bit of feeler kicks in.  It’s rare, and when it happens, it’s always about my girls.  Because I’m such a thinker, the flood of feelings is never easy for me.

I started the week with a report from B’s school, giving her current reading comprehension level, which falls about five years ahead of her age.  I don’t give it too much thought, though it certainly is something that I know will bring increasing issues with finding age appropriate content at her reading level.    For the most part it’s B, it’s pretty much what I expect such a report to say.  It’s not good, it’s not bad, it’s just a bit of info.

A day later, I received an updated progress report for G from her speech therapist.  She was kind enough to write up a very detailed report for us to take to G’s neurologist consult next week.   And there in black and white I see those numbers that I know are true, but I don’t want to see.   Ones that weigh so heavy.   My sweet girl who will be two next week falls in the 9-12 month level expressive and receptive speech as well as cognitive skills.   My growing toddler is still a baby in so many ways.   Well, except for climbing.  Little sister’s gross motor skills are a thing to behold (which creates a whole other issue – we can jump, run and climb up everything, but we don’t understand what can happen and can’t understand mommy’s warnings).

All I can think is why can’t I give some of B’s “ahead” to G to help even out some of G’s “behind”???   Who do I see about a bit of a trade???  How do I make this happen???    I’m sure B would be happy to read a year lower if it allowed her sister to communicate a year ahead of where she is now.  Heck, B may willingly give up two years to be able to communicate with her little sister.  Sure, she’d probably demand a trip to Build A Bear as part of the deal, but I can do that!

Obviously that’s not an actual option, but it hangs heavily in my mind.   Two sides of the curve.  I’m sure normal or average isn’t some place of nothing but blissful nirvana, but I realize I may never know what it’s like there.  And sometimes I just want to sit firmly in a place of denial and ignore the fact that I really don’t know what “normal” would be like.

The older G gets, the harder the delays become.  I put a smile on my face and try and take her to toddler activities, try and remain light and carefree as she throws massive tantrums and children half her age participate in ways she’s not even close to.  I try and act like it doesn’t bother me in the slightest and clench my teeth and try with all my might to get through whatever 30 minutes activity we are at, and wonder how 30 minutes can feel like six hours.  And then there are weeks like this one where I just say f-it, I’m too old for this, scoop her up, throw in the towel and call it a day.

Of course then comes the regret.  She needs the activities. She needs the socialization.   I need to suck it up and deal with the public tantrums, her hitting and kicking me because I’m trying in even the smallest way to involve her in an age appropriate way in the task at hand.   I struggle with thinking “well, she’s not “age appropriate” so her activities won’t be either and I shouldn’t frustrate us both in trying” against the thoughts of  “I don’t want to handicap her further by treating her as though she can’t, and I don’t want to deprive her of these activities”.   Part of me feels like it’s so much easier when we aren’t in settings with other toddlers.   The expectations are gone, the comparisons are none.   I know that is pretty much being in denial, and some days I think denial (as long as we are getting her the treatment she needs) isn’t the worst place to hang out.

Next week we finally have our pediatric neurology consult.   As our pediatrician warned us, this could either be a great start to a path to finding answers, or a total waste of time.   I try not to dwell on the later, but keep thinking that’s probably what it will be.

We’ve recently started to suspect that G is having absence/petite mal seizures.  She’s had moments of spacing out regularly, for a long time.  She goes into almost a trance like state where talking to her, making noise or touching her do not seem to reach her – she just stares blankly into space, and then all the sudden she’s right back with us, usually slightly (or moderately) agitated.

Recently it dawned on me that it could be more than spacing out, and right about that time her speech therapist witnessed it.   We both strongly suspect that there are seizures going on.   She was kind enough to write a very persuasive letter for us to take to the neurologist, hoping that adding her professional opinion will help the neurologist take us seriously.    My husband and I have agreed that we will not leave the office without plans for an EEG.   I keep trying to catch her “episodes” on video, but of course the quickest way to end one is to fumble with my camera or phone long enough to get it set to record.   Heck, I’m starting to think that trying to catch a possible seizure on video may be an actual cure. 

While I don’t exactly hope she is having seizures, in many ways, it would actually be a relief to hear, for a variety of reasons…

1.  It would possibly explain some delays.   I’ve done quite a bit of research on kids with these types of seizures, and many were delayed, and started to catch up like crazy when the seizures were controlled.  It would probably not change the issues which we think are apraxia, but who knows.

2.  It appears to be a form of epilepsy that is very commonly outgrown (my brother had a different form as a child, and by his teenage years it was part of history, with no ill effect – he’s now a high school teacher and an actual Ironman!).

3.  And, to be honest, it would change the game when it comes to insurance coverage.   Our insurance, which currently pays for no treatments for G at all, would have no choice but to pony up.    G would also possibly qualify for the Long Term Care system in AZ, which would provide her additional insurance and open a lot of doors as to the therapies available to her.

Of course in my typical “realist” fashion, I’m preparing to hear that it’s NOT seizures.   I don’t want false hope, I’m not a fan of it.   I just hope we can get something.  Even if it’s just ruling things out.   I just want to feel like I’m one step closer to knowing something.   Knowing nothing sucks.   I know she’s behind in communication.  I know she’s behind in understanding.  I know she can’t point to anything.  I know she doesn’t know what her nose is.  But I also know she can find any object you hide.  I know that she has an amazing memory – when someone comes over she will go and find the same toy she played with last time they were here, even if it was a month earlier.  I know that if you hum a few bars of a song, she will find one of her many musical toys, and push the button that makes the toy play that same song you are humming.   I know she totally gets humor and displays a great sense of it.  I know she remembers routines extremely well.   I know her gross motor skills with things like climbing and running rock.  I know her gross motor skills with things like using her hands for puzzles or sorters is lacking.  Yet her fine motor skills using her fingers are fabulous.  Many things don’t fit neatly into check boxes with G.  Everyone who has worked with or evaluated her has said that – a lot of things don’t quite make sense with her.  I just wish I knew a bit more of why.  Or of how this will all play out.   One crystal ball please!

In other news, G has an occupational therapy eval this week.  As I suspected, she has major sensory issues – she’s seeking sensory input at all times.   The evaluator was great and said what while she could come do in home therapy, she’d actually recommend that we go to another company with a clinic near our house that has an entire sensory program – ball pits, swings, zip lines – sensory sensory sensory!  I got so excited.  Then I called.  Yeah, no openings.  I’m still not sure if there are no openings or no openings if you are through DDD (vs private pay or insurance).   I’m waiting for a call back, and if private pay will get us in, then we will make it work.

On the possible good news, we have found a speech therapist up in our area who specializes in Apraxia and unintelligible toddlers.    If we can work it out schedule wise, we can hopefully see her twice a week for 30 min, versus once for 60 (the preferred method when working with apraxia).   I’m trying to not get too excited until we talk schedule.  Between drop off and pick up for B, G’s napping in the morning and B’s afternoon activities, it can be challenging to work out one appointment a week, so two?   Just hoping we can make it happen, and if it’s in my power, I will.  It breaks my heart to think of leaving our current speech therapist.  I really feel like she is my lifeline in this journey, my one real support who gets this, and is there to tell me it’ll be okay and to celebrate the little victories.  But I know she wants to get back to being a mommy full time, and I can totally respect that.

So the beat goes on.  I hope, so desperately, that our visit with the neurologist next week, that we’ve waited months for, will bring us something.  Some news.  Some possibilities.   Some things to exclude.   Some paths to learn more.  Hoping hoping hoping.