This post goes all over the place, but it’s all inter-related.
Having a child on the autism spectrum makes your mommy radar go a little crazy. Add to that having a “helper personality” and it kicks up a notch. Stir in a little desire to compensate (hopefully not OVERcompensate) for my own mother’s narcicism and lack of empathy by making sure it doesn’t happen with me and MY kid adds another lovely layer to mix.
We’re lucky. DS has PDD-NOS and is on the “mild” end of the spectrum. He has great language skills (still working on the Pragmatics). I’ve read other blogs from both moms and Autistic individuals and have seen how important communication is – I credit the infrequency of meltdowns we’ve had to my son having a shared language with me. If something bothers him or is too much for him, he can usually tell me. I thank my lucky stars every day for that!
DS is a sensory seeker. He doesn’t have sensory sensitivities – at least not in a way that is obvious. He seems to revel in sensation. Sound and light are not a problem – we can shop and run errands without meltdowns. We don’t have to worry about going somewhere new because he enjoys the input. I’ve read other blogs from both moms and Autistic individuals and know that this isn’t the case for many people on the spectrum – they experience pain, confusion, disorientation, and worse. I hear of the struggles they go through and my heart breaks a little for what they deal with just leaving their homes. It’s one less challenge that’s on my plate, and again I thank my lucky stars.
The “shallow end of the Autism pool” is a place that some might also consider “not Autistic enough”. I read about this attitude in the Loud Hands Anthology. Some NT (neurotypical) people brush aside the experiences of those who can speak/interract/communicate their experience clearly so an NT can understand it as “not Autistic enough”, as though being able to put into words the challenges you face makes them go away. It doesn’t, it just lets you talk about them. They’re still there.
Though we can “pass” in the NT world sometimes, things are different here in the shallow end. DS is kicking butt academically (so far – he’s just in 1st grade). He reads like a charm, and has a huge vocabulary. He has an amazing memory, and is very interested in science, animals, etc. But he’s different from his peers.
EMOTIONS: He feels SO strongly, and is so sensitive. And that’s a problem, partly because he’s a boy and society wants our boys to “suck it up” and “have a thick skin”. I’ve also noticed that DEEP feeling starts to get muted as toddlers grow into young children. It’s called emotional regulation, and he has challenges with that.
Joy – Honestly, when he’s having fun, I just sit and let the waves of enjoyment that flow from him wash over me. He’s affectionate (one of the reasons I didn’t rush to get him evaluated) – huggy, kissy, lovey. The words “I love you, mom” fall easily from his lips (they fall every day from mine into his ears). His basic state is contentment – he’s a restful kid to be around.His laugh fills my heart. He says hi to bugs and lizards – pretty much any creature he comes across (human or not) – LOL! Joy – he has SO much of it. But…there’s a flipside.
Sadness/Sensitivity – when sad hits, it hits fast, like a switch flipping. He judges himself too harshly when he doesn’t listen at school. “I’m NEVER good” he says, even though he got a sticker every other day that week, the no-sticker day = bad. I have to remind him of the reality – and luckily it usually works. But if he feels like he’s messed up too badly (even if he hasn’t really), he will get stuck in the sad; all he’ll be able to say is “no” while he cries, and it doesn’t matter what you try to tell him. I have to wait it out, be an island of calm for him until he can get off the “no” and hear me. I love that he cares so much, but I feel bad for him when his sad feelings are so intense. That deep pool of sadness is the flipside of the joy.
Peers: One word, awkward. So far, socially he’s doing OK. He has friendly relationships with most kids. He doesn’t talk about a “best” friend – I’m not sure he has that concept. He will play with ANYONE – young, old – if they want to play with him, he’s ready to roll. He does really well with kids a bit younger and older, but with his direct peer group, sometimes things gets “iffy”. He can play too hard – he’s bigger than others his age, so when he gets excited, he moves too quickly or too hard and doesn’t realize it. Then the kids get mad. When playing with friends, he gets focused on the enjoyment of what he is playing with and has trouble transitioning quickly. So when the other kids want to move on and he doesn’t, he thinks they don’t want to play with HIM. He doesn’t understand that they just want to play with something else. He doesn’t really get rough pretend play. When boys play rough, they can seem a bit scary and to him and he thinks they are trying to hurt him. I’ve watched it happen – they aren’t doing or saying anything “wrong”, but the pretend aspect just doesn’t compute and he panics. It’s as though he’s a 4 year old in a 6 year olds body when this happens. And the kids don’t get it…
I worry a lot, about how he will do in school as it gets harder to navigate. About how he will do with making friends. He is SO social, and loves people – but what happens when your peer group doesn’t “get” you? I worry about what will happen beyond school. I’m dedicated to helping him figure out what his passion might be so he can turn it into something that he can enjoy and that he can make a living at. But I don’t know what his level of function will be independence-wise. Will he fall between the cracks of supportive services? Will he find his niche, a place in the NT world where people “get” him? Will I be able to give him the tools he needs to thrive?
We walk in the shallow end of the Autism pool. We walk on the edge of the spectrum. We do our best and hope the world is kind enough so he can make it through in one piece and with as few scars as possible.