Now that we’re through the mess of a year that was 2015 and Hannah is through with her intensive chemotherapy treatment, we’ve had the chance to focus on some other areas that had gotten largely ignored for a while. One of these is my youngest daughter, Becca.
When Becca was younger, she was a pretty typical toddler and preschooler. She got along well with everyone and we were relieved that she didn’t seem to have the social issues that Abbi had struggled with at that age. However, as Becca has gotten older, we’ve begun to notice some things that she either hasn’t outgrown the way we thought she would, or that are more glaringly obvious when you compare her to other kids her age.
I’d always felt that Becca had some tendencies toward ADD – she finds it almost impossible to sit still unless she’s intensely focused on something, and even when sitting on our laps has always squirmed and wiggled. She is very unorganized and doesn’t pay attention to where she puts things down, so she is constantly losing items and has no idea where. When she was younger, we compensated for this with lots of reminders, labeling items, attaching her mittens to her coat – and I found out when she was in first grade that the bus driver would routinely run her lunch in to the office after Becca had left it on the bus in the mornings.
I also wondered if some of the social issues we noticed with Becca had to do with the fact that she spends a lot of time around Abbi, who we know is somewhere on the Asperger’s/Autism scale, albeit very high-functioning. I figured that Becca was simply picking up social cues from Abbi, but over the past year, we’ve noticed things that go too far beyond what that simple explanation would account for. Now that Becca’s in fourth grade, the gap between where she is at socially compared to the other kids her age is widening.
Last fall, as I was tucking Becca in to bed one night, she began to cry and began telling me that she has no friends, the other kids tease her, and she doesn’t know why. We knew that she doesn’t really have any close friends, but her third grade teacher last year said that she seemed to get along well with all of the kids. This year, that hasn’t been the case. With Hannah and Abbi already in therapy for chemo-related stress and issues (Hannah) and anxiety/panic attacks (Abbi), it wasn’t difficult to add Becca in, and she’s been seeing the therapist every 2 weeks since. She loves the therapist, and especially loves the hour of uninterrupted one-on-one time with an adult where she is the focus of attention. She craves attention, so this is right up her alley. The therapist has been working with her on role playing and trying to work through why she doesn’t seem to fit in with the other kids.
At Becca’s well-child checkup, we also began doing some of the initial screenings for ADD and other things. They referred us to a child psychologist and he had us complete additional screenings. After three visits with me and Becca, plus going through the screenings that Ron and I completed, along with Becca’s teacher, the psychologist feels that there are two things at play, either one or both.
First, she scores high on the autism screening for what used to be called Asperger’s and is now referred to as ‘Mild Autism’. This didn’t surprise me at all – although she does fit some aspects of Asperger’s, others don’t’ seem as close of a fit, especially when you compare her to Abbi. The second thing that the psychologist mentioned is something I’d never heard of before – it’s called NonVerbal Learning Disorder (or NonVerbal Learning Disability), other wise known as NLD.
I was confused at first – NonVerbal? She doesn’t have any trouble talking at all – in fact, sometimes it’s hard to get her to stop talking. But when it was explained to me, it made perfect sense. Kids with this disorder have difficulty in picking up on the nonverbal social cues that most of us take for granted. We can easily tell when someone is joking or being sarcastic or being silly, because we read their nonverbal cues without even realizing it. But a kid with NLD doesn’t know how to interpret those cues. This is why Becca takes everything we say very literally. She also isn’t able to easily take her experiences in one situation and generalize them to know how to behave in a different, but similar situation. This is why new situations make her nervous and why she can’t handle stressful or emotional situations in books and movies easily.
Now that Becca is older, she can see that she’s different – that other kids easily joke and laugh together, while she doesn’t. She knows there are these social cues and rules that she doesn’t understand, but she doesn’t know why she doesn’t understand them, and that makes her anxious and frustrated. At school this year, her teacher has tried putting her in seat groups with just about every combination of other kids but it wasn’t until she let Becca be a ‘loner’ and sit in a desk that’s not grouped with others that Becca has had an easier time at school with no meltdowns. She works better in groups when it’s only part of the time instead of being forced to socialize with other kids all day long.
Academically, she’s doing well, which is a great thing, but we are starting to see her grades fall slightly. Our school doesn’t start using letter grades until fourth grade, so we don’t have previous years to compare her grades to. For the first trimester this year, she got all A’s and A-‘s. The second trimester just ended and she brought home an even mix of A’s and B’s. Still good grades, but we don’t want to see that downward pattern continue. Becca is one of those kids that rushes through her work to get it down and considers ‘done’ good enough, rather than done well. She doesn’t seem to understand what the point is – it’s either ‘done’ or it isn’t. Her thinking is very concrete and black-and-white, with no greys, which is also typical of NLD, I’m discovering.
The traits of a person with NLD are (I’m quoting directly from this page, except for my comments in bold):
- Has trouble recognizing nonverbal cues such as facial expression or body language Yes, this fits Becca very well.
- Shows poor psycho-motor coordination; clumsy; seems to be constantly “getting in the way,” bumping into people and objects I don’t trust her to drink from an uncovered cup at a restaurant still at age 10 – she doesn’t seem to understand where her body is in space or pay attention to what’s around her.
- Using fine motor skills a challenge: tying shoes, writing, using scissors She doesn’t have much of a problem with these, other than that it took her longer than ‘normal’ to master them.
- Needs to verbally label everything that happens to comprehend circumstances, spatial orientation, directional concepts and coordination; often lost or tardy I see some of this in her, but not to a high degree. She does label or ‘correct’ things that she hears someone say that’s incorrect or she wants to make sure they understand what the ‘correct’ thing is. This comes across as being disrespectful to adults or those in authority but it’s more a matter of her need to make sure her world is in order.
- Has difficulty coping with changes in routing and transitions Yes, but not to a high degree
- Has difficulty generalizing previously learned information Yes, very much so
- Has difficulty following multi-step instructions Yes, this has been a struggle since she was small. We have to break everything down into small tasks and be extremely specific. The example that I always give is that I can’t just tell her to ‘go wash your hands’ – I have to not only specify that she needs to use soap, but I have to also tell her to use water too, or she’ll just wipe her hands on the towel and think that’s good enough.
- Make very literal translations Yes. Very specific and literal.
- Asks too many questions, may be repetitive and inappropriately interrupt the flow of a lesson Yes, she doesn’t understand the ‘ebb and flow’ of conversation and interrupts a lot. If she’s thinking or feeling something, she can’t let it go and will ask incessantly or complain over and over, even if there’s nothing we can do right then to fix the situation.
- Imparts the “illusion of competence” because of the student’s strong verbal skills I wouldn’t call her verbal skills ‘strong’ – she does have speech issues as well. And she tends to speak quickly and slur her words together so that she’s difficult to understand. If you’re defining ‘strong’ verbal skills by quantity rather than quality, this fits her to a T.
Essentially, she does well enough to get along ‘well enough’ in most cases, other than socially. I see her with kids her own age at school and at Girls on the Run practice, and she does stand out to me there. She wants to fit in so badly, but just has no idea how.
I see a lot of reading and research in my future – the psychologist gave us a book to get started, and I’ve been looking up information online too. We have one more appointment with the psychologist next week, and he’ll give us his recommendations then. That may include a referral to the hospital’s ASD (autism) program too, for further screening and possible diagnosis there. Many times NLD and autism (of varying degrees) co-exist in the same kid – there are so many similarities between a high-functioning person with autism and one with NLD, which is probably one reason that we see Becca having a lot in common with Abbi, but not fitting exactly quite into that description.
Becca’s 10th birthday was in January. After 2 months of delaying, we finally held her birthday party last weekend. We delayed in part for financial reasons, but more so for the fact that there weren’t any clear cut ideas of who to invite – she really doesn’t have any close friends. We finally ended up inviting one little girl from down the street along with two girls from school (who are in the other fourth grade class, not Becca’s class) and took them to an indoor trampoline park. They jumped and ran and ate pizza and it seemed to go really well, which was awesome to see. Becca had a blast.
Hopefully with all of this testing and determining, we can come up with some strategies and solutions, so that next January there won’t be any question of who to invite to her 11th birthday party.