Oh, where to begin. . .
It's been a little under two months since Henry was diagnosed as having an Autism Spectrum Disorder, and since then lots has happened. If you haven't read the rest of this blog, I'll give you a short-
ish synopsis: Henry was a train wreck for a while, his pediatrician recommended we see the local developmental pediatrician (aka the Autism
diagnoser), he got tubes in his ears (based on urging from his speech therapist), he made some huge improvements, we were warned by the speech therapist that this particular developmental pediatrician (hereafter DP) tends to diagnose Autism A LOT, we went anyway, said DP diagnosed Autism. Not only diagnosed Autism, but said that despite the improvements we had seen and Henry being an absolute angel during the 2 hour appointment, "EVERYTHING I've seen today and everything you've reported is consistent with Autism." She gave us no hope and was very vague about what we could expect for Henry. And she gave us an application for a handicap parking decal. I hate her.
With the advice and support of family, friends and colleagues/professionals who have worked with (or at the very least met) Henry, we are now on a waiting list for a second opinion at a highly regarded institute in Baltimore. And now we're just sitting and waiting and watching and hoping that Henry continues to improve.
Henry started preschool a few weeks ago, and after an initial
freakout the first time he got on the bus, he seems to like it. Everyday he wakes up saying, "School bus! School bus!" and is excited to put on his backpack and run to the bus stop. I'm relieved that he likes it, I really am, but I'd be dishonest if I didn't say I hoped for results that we're just not seeing. . .at least not yet. Although Henry has made significant improvements in practically every possible way since April (when he (coincidentally?) got ear tubes), it feels to me like he's
plateaued. He's saying lots of words, but they're mostly unclear and he rarely says more than one word at a time. Not sure if it's out of laziness, eagerness to get the words out, regression or what but if we don't stay on him about saying every word of a sentence, he'll condense the sentence to the fewest possible words/sounds. For example, "I want more please" will become "more please" or "more" or (if we try to get him to say the whole thing) "want more". And not sure if it's out of frustration from us making him say it over and over again or if he never really knew what the words meant to begin with, but a lot of times he'll start adding other words, like "more yes" (instead of "more please"). It's incredibly frustrating and time-consuming for us (his parents) and him.
Eye contact and interest in others is sporadic. Henry's guaranteed to be interested in you if you're going to tickle or chase him or if you're going to snuggle with him at bedtime. Occasionally, he's interested in others at other times, but that's not a guarantee. It's often difficult to get his attention, he still sometimes screams in frustration, and lately out of nowhere he started lining up his trains (a symptom of Autism). What's very sad and scary is we're getting to a point where friends' children who are younger than Henry are surpassing him in speech, interest in others, etc. I feel so helpless, watching our kid stay stuck in whatever it is he's stuck in.
I've tried staying very involved with Henry's preschool teacher (she's actually a special ed teacher), but her feedback seems purposefully vague, which worries me. I want her to be saying, "Henry's doing great! He's making friends, having fun, doing well and is obviously very smart!" Instead her only real feedback has been, "Henry has transitioned smoothly."
Oooookay.
So, here we are. Just waiting and hoping. And
everyone is telling me, "You've got to love him no matter what" and of course that isn't even a question. I will love him more than anyone in the world forever, but that doesn't mean I'm not disappointed, and scared, and heartbroken at the prospect of my son being unhappy, relentlessly teased, unapproachable, unintelligent, unable to communicate or disengaged from and/or disinterested in others.
Henry's meltdowns are so draining (just like every other kid's meltdowns are draining to their parents); but the responses I get from others are especially upsetting. It doesn't help that Henry's the size of an average 5 year old; but he's getting to an age where a certain type of behavior is expected of him. Of course I'm used to it because I see it everyday, but I get that it's alarming to hear a kid who looks like he's 4 or 5 babble incoherently or scream in frustration. And boy oh boy do people LOVE to express themselves about it! Last week a kindly (truly no sarcasm intended; she's very sweet)
WalMart greeter asked us Henry's age. When we said he'd be three at Halloween she replied, "Oh, that explains it. I thought he was about five and that he was Autistic or something." Sigh. This lady really seemed to mean well. What can you do but give a nod and a tight smile in that situation? The more upsetting situations are like today when I brought Henry to the doctor to check on his ear tubes. Henry, Sam and I were in the waiting room for about 20 minutes before Henry tried to push his stroller into a crowded area. I stopped him and told him he could push it in the empty area. Cue primal scream. Two older women (
BWB fans, you know my record with them) who had been chatting nearby shot me a disgusted look and made a "
tsk" sound. I calmly told Henry that was not acceptable. Cue second (albeit softer) primal scream. Now they were completely disgusted. I ignored them; but at that moment the nurse came to escort us to the doctor's office. Henry jumped onto a chair, hid his face, and started crying. I told him he could walk or get in the stroller, and he melted to the floor moaning. Exasperated, I apologized to the nurse, removed Sam from our Baby Bjorn knockoff and put Sam in the stroller (at which point, Sam started crying), picked up Henry and maneuvered them both into the office. During the entirety of this experience, the two old ladies were laughing (yes, LAUGHING!) at me. To my face. I gave them both the 20 second glare that's meant to imply "You want to say something to me, you ugly twat? 'Cause I'm ready" which obviously made them uncomfortable but did not stop their laughing. This is what I contend with. I hate this kind of situation so much. I do not want to be the person with the screaming, freaking out kid who everyone thinks is a brat. I don't want to be that person! Likewise, I do NOT want every nasty, nosy, self-righteous old hag on the east coast "giving me the business", as my Grandma would say. But it feels like that's what's happening, and it feels totally out of my control.
Meanwhile the confusion regarding Henry and what's going on with him continues. His
ENT (who, upon entering the room, didn't know if Henry or Sam was the patient and BARELY speaks English despite getting his MD in 1978 from the University of Kentucky) couldn't find Henry's left ear tube, then could, then said, "It's probably there" regarding his right ear tube, although he couldn't see it. When I asked why he couldn't see it, he replied, "lot of wax". I asked if that could affect his hearing, and he said "no". (Um, I realize I'm not a doctor, but I'm pretty sure he's full of shit. Especially since
NIH's website says, "Wax blockage is one of the most common causes of hearing loss.") I mentioned that when I was a kid, I often had to get wax removed from my ears, and he said, "Okay,
byebye, see you at Christmastime!"
Jesusfuckingchrist.
Again, so here we are. I don't know what to say about any of it. Sometimes just use this blog as a form of therapy and communication to whoever takes the time to read it. I just love my kids so damn much. I know it's totally a cliche and sappy, but I really did not know I could love anyone like this until I had them. And I don't mean that in an entirely positive way: It makes things complicated, it makes me feel
incredibly vulnerable because here is this PERSON who I would in a second give my life for, and this person operates completely independently of me. If Henry has Autism, or gets cancer, or gets in a car wreck, there is nothing I can do about that fact. Of course, I can react to any of those situations, I can get him help. But I can't stop anything bad from ever happening to him or Sam. And that is so scary.
