And Now We Know

Some of y’all who have been following this blog over the past few years know that our parenting experience with Baby Girl has been challenging in ways. We kept waiting for her to outgrow certain behaviors (I can’t tell you how many times we were told it was all a phase), but that never happened. At the end of last year, BG’s pediatrician referred her to a specialist. We saw a family PA prior, and she always brushed us off about BG’s issues. The pediatrician found the behaviors alarming, so she referred her to a specialist and also got the ball rolling to start speech therapy and occupational therapy. The specialist didn’t seem very concerned about the meltdowns, though, and thought she has ADHD. The appointment was very short, though, and when LM was diagnosed with ADHD, his doctor took several appointments to come to that.

We decided to get a second opinion. We wanted to meet up with the folks from her school before summer ends with a better idea of what was going on so we could all be on the same page and develop a game plan.  We expressed our concerns with the new doctor in the initial appointment, and he said he wanted to do a thorough evaluation to look at different possibilities for what was going on with her, but that he was primarily concerned about autism. 

Over the past couple of months, BG saw the psychologist several times, we did a shit ton of questionnaires, and he talked to her preschool teacher. On Friday, we got the results. First, he agreed with the other specialist and said she does have ADHD. He came to that conclusion after spending more than 10-15 minutes with her (which is what the other specialist did, sigh), so we were comfortable with that. Next, he said that she also has high functioning autism. He spent about an hour going over the tests and stuff and showed us how everything supports his diagnosis. The doctor said that it can be tough to diagnose in gifted younger girls, but that she was a textbook case of a little kid with HFA.

I was surprised. I knew autism was a possibility, of course, but still didn’t expect it. And I was flabbergasted at first on how she would be considered a textbook case. She can be very outgoing and chatty when she wants to be, she can be very charming, she doesn’t stim (or so I thought), she made a couple of friends at preschool last year, and she isn’t terrible with making eye contact. She has such a feisty and mischievous little personality, too. BG just has a real spark to her.

Granted, there are “buts” to some of those things. Like, she can be outgoing and chatty, BUT it’s usually her talking on and on about the stuff she’s into. And with her friends, she told me how she doesn’t play with them at the same time, but switches up depending on who will do what she wants. As far as eye contact goes, sometimes she does okay and sometimes she doesn’t make it at all. Like last week when she and I met with her teacher, BG talked excitedly about her birthday for a few minutes, and then wouldn’t make eye contact with her teacher at all, would barely speak outside of “yes” or “no” questions, and talked in the flattest voice ever. It was like someone flipped a light switch. She can be in her own little world a lot, though, so it’s hard to say that when she doesn’t make eye contact (or doesn’t maintain it well) that it’s because of a specific reason.

Aside from not having any of the severe behavioral issues that BG has, LM seemed to be a better fit for that when he was tested around age 7 or 8. My husband, on the other hand, later told me he wasn’t surprised at all and said he knew she had autism, that it’s obvious, and it was just a matter of getting it diagnosed. I don’t remember him ever saying that before, but okay. He also pointed out that LM was also chatty and charming when he was younger, which I guess I had forgotten since he is now a moody tween. At his theater camp, he wouldn’t even sit with the other kids…he wanted to sit by himself and look at his Pokemon cards. I asked why and he said, “None of those kids will be in my class next year, so why should I try to be friendly with them when it doesn’t matter?” As an introvert, I can relate so hard, but as a mom, c’mon, kid!

When I brought up that non-textbook stuff with the doctor, he reminded me that it’s a spectrum disorder and that girls with it present differently from boys. Being outgoing can be normal, he said she does stim (but it isn’t obvious like hand flapping would be, but he considers the nail biting, skin picking, and licking stuff to be stimming). He also said girls like her are excellent as masking and can come off as being “normal,” which is part of why it can be tough to diagnose.

All righty, then.

This has been quite a year for her. She was diagnosed with a rare neurological disorder this year, she has been in speech and occupational therapy all year, and now this. It has been a lot, but I am SO glad we are figuring things out and getting her help. She’ll also start therapies for social skills and helping her learn to cope better (thereby reducing the meltdowns, I hope). The doctor said doing diagnosing her early and adding in those extra therapies now will make a world of difference down the road.

And, oh…remember how BG often acts like she can spell or read a lot? She didn’t hold back for the doctor, who said she tested as reading on a second grade level.

Yeah.

This is long enough, but I have a lot more to say — especially regarding the stuff the diagnosis explains the hell out of — so I’ll tackle that in the coming days/weeks.

15 thoughts on “And Now We Know”

  1. I will offend people, but oh well: I have never had a good experience from a PA as either a patient or working in the same department. So there’s that. One of my favorite bloggers is a high-functioning autistic (you’d never know it until he posts about it every so often). Busy year, I guess. I can’t imagine the stress it all is, but it must be feeling a bit better getting to know more about what she has and ways to work with it. Uncertainty, about anything, is just crazy-making.

    Liked by 2 people

    1. Me neither (as a patient). I had a nasty ear infection last summer, and the same PA told me that ear drops aren’t prescribed anymore for infections. After three weeks, I saw an ENT who gave me…ear drops, and I felt better in a couple days. Sigh.

      It is for sure. I swear, between that PA saying it’s a phase (a three year phase) and certain people acting like we’re just bad parents who don’t know how to handle our kid, i felt like I was going crazy. I’m glad we are in a place where we know what’s going on so we can make a good plan on how to handle things.

      Liked by 1 person

  2. This is one of those…. moments. It’s great, it sucks, it’s a relief, it’s worrisome, it’s wonderful, it’s terrible. I know.
    Y’all will be ok. Y’all will be better than ok. BG is absolutely amazeballs. I love watching her on IG. You have a beautiful and quirky and hilarious and INTERESTING family. ❤️❤️❤️

    Liked by 1 person

  3. Wow, I’m new to the blog but it sounds like you’ve had your lives busy for the past 3 years. I’m glad there is a light at the end of the tunnel. HFA kids are amazing. I was blessed to have 2 students during my years in the classroom. Luckily, they were diagnosed early on and their parents were already in the works of getting them therapy and strategies to work with them. You’re doing great mama! Good thing you followed your gut and got a second opinion.

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  4. Glad you got some answers. I have no neurotypical children. Oh for four on neurotypical. They all have good and interesting brains and they lead typicalish lives. Your kids have great support — you are resourceful and capable.

    Liked by 1 person

    1. As batty as the screaming and meltdowns makes me, I can’t imagine living in a world where I’m not constantly saying things like, “Get your stomach out of the floor” or “You left your uterus in the bathroom.” 😀

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  5. OMG, I can relate to SO VERY VERY MUCH in this post.
    My youngest has ADHD and Anxiety as well.
    Social skills are so hard and so is being a girl because girl friendships get cutthroat.
    The drama was a big trigger for my daughter and she still struggles with it as an almost 12-year-old.
    So much I could write about but I just want to say you aren’t alone.
    Neither is your daughter. 🙂

    Liked by 1 person

    1. Oof, it’s amazing how much drama kids have this young! My son (who also has ADHD) about went nuts with all the drama in his 5th grade class. I told him it’d only get worse from there!

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