We’ve been searching for answers for Leo for, oh, seems like forever, now.  Our pediatrician kept reassuring us that he was meeting milestones pretty much on time and that he seemed absolutely perfect, so we went with that for a while.  At the boys’ fifteen-month checkup, though, I wasn’t content to wait any more.

Leo had always been the yappier, more vocal of the two boys, but between nine and twelve months, he began getting quieter and quieter.  At the same time, he became a bit solitary–distant–and frequently preferred to spend his time alone, chewing on things, rather than playing with us.  He also seemed tired, worn out–not my pink-cheeked, excited little guy.  This wasn’t Leo.

So I had him brainmapped, and as I scanned the lists of possible diagnoses the next day when we went for results, I can honestly say that I’d never been as relieved as when I saw that the box for autism wasn’t checked.  But in the end, it doesn’t really make a difference.  Leo benefits from exactly the same therapies used to treat autism, as he presents with many symptoms typically seen in autistic kids.  In his case, the cause is just different.

He immediately began receiving speech and occupational therapy through our local Early Childhood Intervention program, which was enormously helpful, though not frequent enough.  But clearly, it had its limits, and as the extent of his speech delay became more obvious, we sought private speech therapy.  The therapist recommended to us, though, was based several states away, so everything needed to be done by video, including the initial evaluation.  Looking back, I feel he was improperly diagnosed because it’s truly not that he’s incapable of making the necessary sounds; he just hasn’t started using them as he primary mode of communication yet.  It’s such a subjective thing without the therapist being able to examine his mouth and see him in action for more than a few minutes at a time, or being able to try the prescribed exercises with him herself.  I was Leo’s primary therapist, and it was wearing me out.

But back to his diagnosis… the therapist felt that he presented with Pervasive Developmental Delay and Apraxia.  PDD, to me, is just another label and one more way of getting additional funding for schools, and I wasn’t about to see Leo having “PDD” stamped on his forehead when his delay is, in fact, extremely specific.  There are areas, actually, in which he’s more advanced than Luka, but therapists don’t seem to like hearing any sort of comparisons.  All that aside, I didn’t have a problem with Leo’s prescribed therapy, since it addressed appropriate issues, though perhaps not all of them.  My main problem was that at least some of the time, I felt the therapy needed to be administered and monitored by a professional; after a while, the “You’re his mom–you know him best,” business starts to sound like a really convenient therapist’s excuse for not having more answers than I do.

Once Leo began school–when he turned three, at which time his ECI services were terminated–we went through all of the evaluations, the ARDs, the IEPs, blah blah blah…  (How much longer until I start referring to myself as a MOONTKAHDDT *?)

Anyway, we saw a neurologist early this summer and Leo’s EEG was perfectly normal; we still have to do an MRI (easier said than done…) as well as a few standard blood tests that none of our docs expect to show anything out of the ordinary, and updated allergy testing.  Unfortunately, because of where we live, he’s needed Benadryl or Zyrtec intermittently all summer long, and I can’t schedule the blood testing until he’s off the stuff for two weeks straight.

Said neurologist agreed that we should intensify his therapy schedule, but now the poor kid’s just inundated.  Four hours a day at school, plus two bus rides and a ridealong to drop Luka off at his school, first.  And on top of that, he’s supposed to have two hour-long OT sessions and two half-hour ST sessions each week–and since school’s back in session, it’s absolutely wearing the little guy out.  Seriously, he came in from school yesterday and just crumpled in a little Leo-heap on the living floor.  It doesn’t help that our current therapists are half an hour away in traffic, either.

So, I love the therapists; I just hate the four hours of commuting to therapy each week (time lost for the kids, not me…), and the fact that twice a week, Leo has to go straight from the school bus into the car to therapy, with no time to just be a three-year-old.  Inevitably, on those days (and even the day after), he’s so tired that he just cries, and has hardly any regular-kid fun, which he clearly misses.

So now I’m on a search for other therapy options… maybe a place closer to home, or one that’s got appointments available at times that would work better for him.  Yeah, that…  Then, there’s also the fact that the neurologist wanted us to get him ABA therapy, and it’s taken me this long to locate a place that actually might be a possibility.  Oh, and I probably am a difficult parent, because I always want to know more than they want to tell me.  But he’s my kid.

 * Mother of One Neuro-Typical Kid and his Developmentally Delayed Twin… Does this give you any idea just how annoying I find this need some people have to label everyone?!  I was floored to find out that they weren’t happy to just label Leo as delayed, but Luka also needed his very own ‘neuro-typical’ designation.  Please!!!