I’m having a discussion with Kiddo#2 about rocks, the amazing feel of their varied textures, the reasons why he loves rocks. And me, the logophile, stopping to explain the difference between Geology and Geography…
We should be outside. We were outside enjoying the glorious weather (mid 80s instead of the past week’s 100+ weather). We were having a blast! Until Mom had to herd the kiddos back into the house, because Kiddo#3 was having a bad day, and bad days for Kiddo #3 are unlike anything you or my neighbors would expect.
Kiddo #3 has autism. Or not.
From day one, it’s been a ride. Born four weeks prematurely, spending 8 days in the NICU, unable to breathe on his own at first, from the very beginning DH & I knew he need an extra bit of attention. Mind you, all of our kiddos were born prematurely. None of the others had even the slightest of problems.
And from the start, there were “signs.” Kiddo #3 did not “take ” to anyone except Mom, clingy doesn’t even begin to describe it. Kiddo #3 does not like tags. Yes, tags. The kind that come on the back of almost every shirt we buy. He can’t stand them. All must be promptly cut out of his shirt or he won’t wear them. As a matter of fact, he gets angry simply at the sight of one. Kiddo #3 did not enjoy baths as an infant or a toddler. And I don’t mean he disliked them, I mean the mere sound of running a bath would cause him to scream bloody murder. It’s an awkward situation to have a child that refuses to go near a bathtub without screaming. They can’t go for years without a bath, after all. And, it was such a loud and piercing scream, lasting for so long, DH and I thought for sure someone would call Child Services on us at some point. Fortunately, no one ever did. And fortunately, he outgrew the bath aversion. Only to replace that with other aversions that led to more screaming fits. The pattern we run into when we move into a new home (we’ve moved three times since Kiddo #3 was born) goes something like this: We meet the neighbors. They’re fairly friendly, although sometimes not. They “adore” our children. Wave every day. The usual, neighborly stuff. And then six months later no one is speaking to us. Not a soul. I’m guessing they’re wondering what in the world is ALL that screaming about.
Screaming fits occur at least a dozen times a day. Sometimes more, occasionally less. As he gotten older, they have gotten somewhat better. He doesn’t yell or scream outside (on his good days) and he’s never picked a fight with friends or strangers. Siblings, of course, are another story.
Kiddo #3 took just a wee bit longer to develop the usual skills. No talking until the age of 3. No interest in potty training until the age of 5. None of the usual abilities to find coping mechanisms for his frustrations. Hence, the constant screaming.
First it was checking with the doctor. You don’t want to assume that something is wrong with your child. And he is such a sweet child when he’s not having a fit. Doctor said everything was fine, just a slow developer nothing to worry about. Then it was visits to an ENT and a Hearing & Speech clinic. Well, ok, maybe there’s a bit of a hearing problem in one ear. Yes, the speech delay is extreme but give it a few more months. And, voila, a few months later he was talking, but at three he talked like an 18 month old and at four he was talking like a three year old. Now he has the appropriate vocabulary for his age, but he still has not developed clarity in the pronunciation of his consonants, so friends of the kids will at times say (in the usual direct & to the point fashion of children) “I can’t understand what you’re trying to say.” Which, of course, hurts Kiddo #3 to the core, because 1. Mom is much better at discerning the meaning behind the phrase, and 2. He “thinks” he’s saying each word correctly, he doesn’t realize his pronunciation is a bit off.
At four, we took him to a Behavioral Psychologist. No, she said, nothing wrong with his behavior. Let’s try a Developmental Specialist. Off we went, next stop, Developmental Specialist and a grueling half day of testing. Well, it was grueling for me, I think for Kiddo #3 it was pretty fun, since it was all play-based testing. The upshot? He tested .5 into the Autistic Spectrum, less then half a point. But there it was. The doctor did say to bring him back in two years for retesting, since young children will fluctuate in the presentation of their abilities. That re-testing will occur later this year.
The good news is Kiddo #3 does not give any signs of being Autistic. He makes normal eye contact. He socializes and plays with other children. He’s happy to go out and do all the usual stuff. Last doc visit, they told us to stop referring to him as “Autistic.” And so we did, and we have.
And there’s always a but…
The fits of anger and screaming and sensory agitation continue. It’s hard to maintain friendships, let alone one’s sanity, when you never know from day to day if all will dissolve into a screaming web of disaster. It’s led us to a new lifestyle of rarely opening windows or doors to let fresh air in, because one never knows when a “fit” might arise. I used to be a throw the windows open kinda of gal, I grew up on the West Coast, after all.
We felt extremely slighted by one speech therapist who said to us, off the cuff, “He really should learn to blow his nose…” As if we wouldn’t have tried to teach a five year old to blow his nose. As if we were bad parents… as if he was a bad child. Which he’s not. He’s sweet, adorably sweet, and oh so caring. He just doesn’t take to instruction very well. Not because he doesn’t want to. Not because he can’t. But rather, because he doesn’t deal well with frustration, if he can’t do it perfectly he won’t do it at all.
So, today’s fit arose from a dispute between Kiddo #2 and Kiddo #3 over which side of the house to play on. No big deal right? Wrong. What should have been a normal dispute between siblings, erupted into a blood curdling scream that sent me running from the back porch to his side. Calmly, I said, you’ll have to go back into the house now. That led to more blood curdling screams. Ok, let’s move this in the house now. No one could really hear me since Kiddo #3 wouldn’t stop screaming and Kiddo #2 is already old enough to mosey on about his business and get out of harm’s way. Long story short, I had to do my usual last resort, which is to count from 5 backwards and point in the direction I want him to go. For some reason, this usually works, and it did today, but it didn’t stop the screaming. He headed up to his room, to his bed, and within 5 minutes he was asleep.
My next move is always to sit on the coach, breathe deeply and try to regroup. The whole process is always very unsettling, even though we’ve been through it time and again, year after year. And of course, there’s the guilt. My other kiddos are always waiting on the sidelines for the fun to continue, at some time, at some point. And their waiting breaks my heart. There’s no complaining. Everyone works together.
But it’s hard.
So I’m frazzled.
Hopefully, after the nap, we can go back outside and try again.
***This post was originally written in the summer of 2009, I’m happy to report that kiddo #3 turned out not to be autistic, he was just a sensory sensitive toddler who was late to speech, and now is a happy and social kiddo.***
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