Into the unknown

I haven’t had too much to say since we’ve been enjoying the summer–at least, the summer, such as it is in Northern England. But briefly, I’d like to say a word about parental instinct.

For a host of reasons that I’ve been gathering, tracking, and as of today actively journaling over the last few weeks and trying inadequately to describe to far-away family members, we’re bringing Maggie to the pediatrician for a referral to whatever the UK’s version of Early Intervention is. Whatever…this…is, if it is anything at all, I am not sure. I’ve had nothing to go on but a few incidents and a nagging feeling in my gut that something was not…quite…right.

There’s something about the way Maggie processes the world that makes me wonder. Hating the feel of the hairbrush and toothbrush or the feeling of water coming out of the faucet. Becoming upset and repeating “Loud noises don’t hurt” over and over to reassure herself when she hears an unpleasant sound. Most heartbreaking of all is backing away from children her own age in a defensive posture, hands up, visibly nervous that they may engage further. It doesn’t happen that way every time; she’s been able to play with some friends’ kids. But most of the time it’s “hands up, back away.”

And most recently, today: a full-blown panic attack (body locked, hyperventilating, sobbing, begging to go to the car) at a baby ballet class that until now she’s made a few attempts to endure, if not happily. This is not the first meltdown in class or the first one that forced us to leave and find a dark corner to calm down; it was the first time we had to leave almost as soon as the class started. It was thirty minutes before I could calm her down enough to even attempt to figure out what might have triggered her reaction. She calmed down enough to agree to go into the adjoining kid’s gym play area, where she buried herself to the neck in the plastic ball pit and remained as motionless as a lawn ornament for twenty minutes before she requested to go home.

I’ve read the literature and I’m quite confident this is not autism. I’m also feeling good that it’s not full-blown sensory processing disorder; she likes to fingerpaint with her yogurt as much as the next toddler, adores the sea and sand, and would eat rebar if only we covered it in tomato sauce. Nobody is going to be more excited than I am to hear that this is nothing; just a phase (albeit a long, protracted, well-predating our move to England phase) or something easily dealt with. I’ve hesitated even saying anything when all I have are a few hunches and a couple incidents that make me say “Hmm…”

I hope I’m overreacting and that we are not about to leap over the edge into an unknown world. I really do. But our instincts say that we need to talk to someone. And so we are.

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14 thoughts on “Into the unknown

  1. We were dealing with this recently ourselves. It’s really quite terrifying. We took Jack to a specialist because he was showing signs of autism. This really f’ed me up for a couple days. I had a hard time processing that my child might be developmentally disabled in some fashion. I got angry, too. How is this happening when we did everything right, and my brother’s girlfriend smoked meth when she was pregnant and their baby is fine?

    Jack was having trouble interacting with other kids, too. Especially large groups. He became a terror at his daycare so much to where we were actually kicked out of it. He had trouble with loud noises. He’d clamp his hands over his ears in pain during music time at school. Soccer time was a nightmare. He seemed to be the only kid there that wasn’t following directions.

    In the meantime, I’m thisclose to being in full blown panic mode. I felt terrible because I didn’t want a special needs kid, yet I love my son more than anything so how do I handle this? Chris was worried that I’d leave the family even though I had never said anything or done anything to intimate that. Her way of coping was to worry that she’d have to do it alone.

    We were real touch and go for about five months. I looked at everything as though it was a sign of autism or Asperger’s. Eventually things started to work out. He started playing with other kids once we moved him to a school with smaller class sizes. We had his hearing checked and then new t-tubes were put in (he had had them previously but they had fallen out). After our second visit with the specialist from Kansas City, we were told that Jack was not in the spectrum at all. He was just extremely bright, and very, very strong willed. Ok, so my kid can be an asshole. God, what a relief.

    I wish I had some sort of advice that would make you feel better, but recently being in your shoes I know that there really isn’t any. Just wanted you guys to know you weren’t alone out there. Much love from the three of us to the three (four) of you.

  2. Thank you. This is pretty much exactly what I’m hoping will happen–that there is something wonky about, but it’s related to the fact that Maggie is simply a Super Sensitive Snowflake. But then I feel like an asshole for thinking “Oh my GOD, NOT A SPECTRUM DISORDER NOOOOO!” because it isn’t the end of the world. Tom was worried about going to a doctor and having Maggie “become” a diagnosis, if there was one, and of course I got angry and said that if this was a harelip we wouldn’t even be discussing “if” we should see someone. But of course, I have my own hearty helping of denial about what the worst-case scenario could be so who am I to be angry?

    And there’s this: she’s a loving, sweet, caring, imaginative and creative child regardless of any kinks in the wiring–and we all have those. She’s actually exactly like her mother: a little tightly wound, sensitive, a bit of a loner (talk about “blame”, oof) and I just know how hard the road gets when you get a little older and you feel like everyone knows how to navigate the road because they got a map you don’t have.

    Bottom line: my heart and soul is out walking around with something out of whack and I don’t know how to fix it. Is there any worse feeling as a parent?

    • Yeah, my little sister died as a kid. I still cry about it. I can’t imagine how that feels as a parent- I can’t imagine it. My entire identity is wrapped up in the fact that I am Jack’s father- I would imagine that it’s similar for you.

      Tom is absolutely right. We were so worried that all people would see is “autistic kid” and not the loving, happy, sweet, innocent child we know him to be. There is a real fear that with that kind of diagnosis (or any other, for that matter) that your child stops being a kid and becomes a label. And you, the nurturer, the provider, the protector- are helpless to stop it.

      The way I finally got a grip on our situation and outcome was to adopt the mindset of, “nothing changes, except my approach.” This gave me power and the confidence that I needed to adapt to this new possibility. I realized that in a way, even with autism or Asperger’s or god knows what else, Jack was still like every other human on the planet. He had certain strengths and weaknesses. Our approach became to build upon his strengths and address his weaknesses.

      When we began to look at it that way, it certainly wasn’t as though everything was all better and we were no longer scared, but at least got rid of the helpless feeling and put us in a position to take action.

      • I figure we all have hurdles. Some have labels, some don’t, but nobody gets off scott-free–we all have something we need to work on but we’re all capable of using our good and bad gifts to positive effect. It changes nothing about who she IS, and what she is is a pretty damn funny and loving kiddo. 🙂

  3. Deanna, after 17 1/2 years of parenting, I can tell you that you are smart to listen to your instincts and at least talk to someone about your concerns. I hope you like the person to whom you’re directed and find some answers. You are VERY fortunate in that you’re a full-time mom and have the time, energy and wherewithall to devote to whatever Maggie’s needs may be. I thank God that I was in the same situation when my son needed speech therapy. I’m sure we would have worked out “something” if I’d been working, but being able to take him to appointments (doctors, hearing specialists – he just needed tubes, come to find out, therapy sessions, etc.) was such a blessing.

    (This was supposed to be at the end but your Comments are extremely messed up – the box refuses to advance and is jumping around like mad. Very frustrating) I was trying to say, “Just so you know, Maggie is a pretty terrific kid with some terrific parents.” 🙂

    I find it very interesting that Maggie buried herself in the ball pit. It’s like she anxiety-wrapped/swaddled herself. I will be thinking of you and hoping for the best! Your readers who don’t even “know” you think she’s a pretty terrific kid, with some terrific parents

    • How odd about the comments; I haven’t had any trouble but let me know if it keeps up. I don’t know if I can do anything about it since I am functionally computer-illiterate, but I’m sure I can email someone at WordPress! 😀

      Thanks for the kind words and encouragement. I really, really hope that I am making a big deal over nothing. My gut feeling is that she’s just a sensitive, finely-wired kid who needs a few coping techniques to get her over the hump and not any kind of long-term intervention, but we’ll see what the doctor says. If it’s nothing and can be conquered with a few adjustments and exercises, good. If it’s something, we caught it early! Good news all around.

  4. i don’t remember much of it, but when my sister was about your lil’ ninja’s age my parents had her in testing and counseling. she had a lot of those sensitivity issues, not the sleep issues or social issues, but horrifying tantrums. she scratched at the doorknob to her room.

    and she’s been high-strung since. i know ulcers aren’t really supposed to be caused by stress but she had them in junior high sooooo… but she was never diagnosed with anything in particular, my parents kept up their patience and every year she got a little better and less prone to upset. she’s still sensitive, can get angry or hurt more easily than the rest of us, but she copes and we cope and she’s a very smart and happy woman today.

    which is all to say – who the hell knows? listen, watch, do your best and so will she. it’s all we can ever do for each other. 🙂

    • Boiled down to its essence, that’s my whole parenting philosophy in a nutshell. Listen, watch, do my best. 🙂 I mentioned in the follow-up post that right now I don’t think we’re dealing with a full-blown anything; just that she is a finely-wired kid who needs a little extra help learning to manage the hurdles. I think the primary benefit from a doctor visit (scheduled for next week) and any following specialist appointments (if needed) would be for me and Tom; learning more about how Maggie’s brain works at a technical level is never bad information for a parent to have and maybe we’ll get some new strategies in our toolbox.

  5. Oh, honey.

    I … Well, crap. I have no idea what to say. I’m not a mom. I’m not even an aunt. I have no frame of reference whatsoever, so my words will sound presumptuous and haughty and arrogant.

    So I’ll just say that I love you guys to pieces and I’m sending positive vibes your way.

    • Thank you. 😀 I genuinely think we’re just dealing with a sensitive little person; I’m hoping we’ll be told she just needs to build her confidence a little more to deal with certain scenarios.

      BTW–we taught Maggie when putting her United States of America puzzle together that “Washington is where Auntie Geraldine lives.”

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