Mostly, I'm writing this post to remember things. I want to keep a record of what's on my mind.
Jack has me worried. His quirky nature is really kicking in and becoming pretty pronounced and the "ghost of autism" still lives here. Last year, they
said it was anxiety. His former therapists (speech, occupational, and developmental) all said it was sensory processing disorder. Others tell me to just let him mature; maybe he'll be different in another six months. So, my heart is heavy. I've chosen not to put him in preschool to give him a chance to mature a bit more because I'd hate to set him up for failure. I like to put him in situations where he'll succeed because it's good for his self-esteem and I just don't think he's ready for preschool right now. Maybe in a few months it'll be different. Instead, Jack and Livie will both go to classes at the park down the street from our home, twice a week. It'll be good for them.
I do know one thing. If Jack is autistic, he's very, very high functioning. And an outsider would probably never know. Aside from his quirks, he's a pretty cool kid. On the outside, people would see him as a handful, but I prefer to call him "spirited."
1. His memory is impeccable. Remember how I used to say he'd memorized the words to over a hundred books and over six hundred songs? Yeah, well, now he's taken to memorizing entire episodes of his favorite shows (Wow Wow Wubbzy, Max and Ruby, etc.). And he "acts" out the scenes at home, as if he's in the show. And he'll rehearse until he gets it perfect.
2. His sensory integration issues are more pronounced. Where I thought he'd learn how to compensate for them and cope with it, he's not. When he was two, he didn't speak and would scream out of frustration, which would then bring out all the sensory issues. Now, he speaks just fine, but his sensory stuff interferes with his ability to speak his thoughts when he's upset. He's completely flip-flopped now. For example, he'll fall and get hurt and shout out something strange like, "Popsicle!" It has nothing to do with being hurt, but he says it because he can't find the right word to express his feelings.
3. His perfect pitch, his ability to identify each drum in a drum set, his remarkable rhythm...he's definitely musically talented, if not gifted. His ear is amazing.
4. He won't write. I've seen him hold a pen the right way, but as soon as he sees me noticing, he stops and throws it. I can't give him chalk, crayons, or pencils with erasers because he eats them the minute I turn my back. Then, again, so does Livie. They really like to double-team me. It's not the eating of the writing implements that bothers me; it's the lack of interest in wanting to write or color at all.
5. He repeats what we say. Sure, he'll say things on his own, lots of the time. It's those times when he's saying something that we know he's heard before. His speech therapist says that Jack's an auditory learner and he tends to repeat things we say so that he can understand it. She said it makes perfect sense to her that he does that and it's only odd if he doesn't ever change the wording or uses the phrases out of context. He doesn't do that, but it still bothers me that he does it at all. Although, come to think of it, Livie does that, too, to understand what we're saying, but that's normal for her age. And with Jack, I have to remember that he didn't even begin talking until he was two.
6. He has no fear. He would think nothing of running away when his sensory systems have shut down. He just runs and becomes reckless. He'll briefly look back to see if we're coming, which makes me think he's playing me, but it's hard to tell.
7. His meltdowns are fierce. Sometimes he flips out because he's not getting his way. Other times, it happens because he's just too overwhelmed by his environment. We try not to do that to him, but there's no way to know what will set him off and when it'll happen. Believe me, we can tell the difference between the two types of tantrums. The word, "no," sets him off, but it does that to most 3 year olds, I think.
8. When he's angry, he bites his fingers. I think he does this because he knows I don't want him to do it. Although, sometimes I wonder if he even feels it at all. He does it and tells me, "That's going to hurt," or "That hurts." He knows what he's doing is not right, but he does it anyway.
He can be the most amazing kid I've ever seen, watching after his sister (when he's not beating her up) when she gets hurt. Most of the time, he listens well. He has chores that he loves to do, is eating a variety of foods, is becoming much more social, and tells jokes that show he has a sense of humor. He understands right from wrong and usually tells me when he's done something wrong. He tells us exactly what he wants or needs all the time. Cognitively, he's right on the mark. Socially, he's anxious and doesn't know what to do. He has days where he's as "normal" (for lack of a better word) as any other kid. And there are days when I just don't know what's going on with him. Sometimes I look at him and wonder
if he's autistic and sometimes I look at him and know
he's not autistic. Jack lies in the gray area between being on the spectrum and not being on the spectrum. He probably wouldn't get a diagnosis because socially and cognitively one could never tell. If, however, his sensory issues were in full swing, he'd test out as an autistic. This tells me that his sensory integration issues are making him appear to have symptoms of autism and that he's not "classically" autistic. And sensory issues have a way of masking what one can truly do. Picture yourself in a crowded room where everyone is wearing heavy perfume, the music is too loud, and the room is too bright. Tell me, how are you going to do if someone is testing you in that environment? To a kid with sensory issues, environment is everything. And Jack would never do well on any test if his sensory stuff was getting in the way and he did not feel safe.
He has anxiety issues. He's my little worry-wart. He's an intense child that loves you more, jumps higher, kicks harder, sings louder, dances crazier...he's like having two children inside the same body. He's Jack and I love him. There's nothing more challenging or more rewarding than being his Mom because I'm learning from
of him. I honestly do not know where to go from here. I'd hate to put him in school because his issues may impede his or others' progress. If I don't, he's not getting practice in socialization. Damned if I do, damned if I don't. So, I enrolled him and Livie in two classes at the park to make up for not putting him in preschool, hoping that some is better than none.
I don't know that I want to call his pediatrician and tell him this stuff, either. He sees Jack once a year for check-ups only because the kid doesn't get sick enough to go in. I like Jack's doctor, but he's one of those staunch believers in the idea that the ungodly number of vaccines kids get (36!) don't cause autism. However, Jack was fine until he has his MMR at 15 months. That's when he changed. And he originally didn't want to sign off on Jack's weighted vest or trampoline provided by Early Intervention because he didn't believe it would help. And I made him do it because I had to advocate for Jack. He also didn't want to put Jack through allergy testing if we didn't have to. And now I'm thinking that maybe I really should check into that approach. I know allergies have a way of manifesting themselves in strange ways in children. Perhaps he's being exposed to something that just isn't good for his system.
There are a million things going through my head right now. All I know is that my son lies in that gray area and could go either way...on or off the spectrum. On good days, he's off the spectrum. On bad days, he's on it. So, what do I do? Put him through more evaluations with strangers who freak him out? Or let him mature a bit more and see where he is in another few months, all the while wondering if I'm doing the right thing? Sometimes he puzzles me and he makes me second guess myself or he does something so brilliant and wonderful that I kick myself for ever thinking he was on the spectrum. And then there are days when I just sob because my gut tells me he is. If he is on the spectrum, would it be bad if I didn't want to know? I wouldn't want him to be recognized as "autistic" before he's recognized as "Jack." Does that make sense? However, I wouldn't want to deny him any services that might help him, but there's no guarantee that he would actually qualify for services. Like I said, he's in that gray area and kids in that area don't get help. Jack may have his foot in the autism pool, but he's not deep enough in the water to be saved from drowning. You know what I mean? And he'll probably grow into a very "normal" adult just like the rest of us, but he'll still be quirky.
After all, my own pediatrician thought I was autistic because I was a head-banger...for years. Could Jack really just be quirky? I am, so I guess it's possible. And who knows? Maybe I've masked my own sensory stuff over the years so that it appears that I, myself, am not autistic. Aren't we all on the spectrum to a certain degree?
This post will soon be cross-posted on Chicago Moms Blog