Hello. I hope no one minds if I post this here. I'm not sure I have a specific question (well, I have many, but none are the point of this post). Mostly, I have so much swirling around in my head about my daughter, and while I can share with real life friends, so far no one has any real understanding of what we deal with. This is long - kind of a data dump, but it feels good to get it out. Mostly I'm hoping someone will say they understand and maybe can give me some comfort so I can stop worrying so much.
People tend to react strongly to my daughter - they either are in awe of her and want to congratulate us (which makes it hard for them to understand why parenting her is not the easiest thing!) or think she is just stubborn and strong-willed and we are lax parents. The way I feel, and try to convey if I do talk about her, is that she is who she is, just like anyone else. She's no better or worse than anyone else, but she is different, and our challenges and experiences are so different from anyone else's.
I swear I knew her personality months before her birth - it was just so strong! I remember saying when I was pregnant that she would not be easy, but she would be a whole lot of fun. The difficulties started immediately with nursing. Day 1 she did great, day 2 my milk came in and she didn't like that it came out faster and refused to nurse. The lactation consultant told me there was nothing wrong and she was just stubborn - highly unhelpful but I do think completely accurate. Her instincts seemed at odds with survival skills for the longest time. To put it in metaphysical sense (not that I believe this but it's a fun way to articulate it), it was as if some powerful ancient spirit found itself in the body of a newborn and was all "you expect me to do what? Not happening." Eating, sleeping, pooping... nothing ever "just happens" for her. Her thinking level was so fully developed that there was never a time before full awareness of everything. At almost 5, she still refuses to go directly in the potty, #1 or #2. As of spring, she decided to wear underwear, but will still put on a pull-up every time she has to go to the bathroom. She just says she isn't ready, and that it feels different without a diaper. Mostly she's just terrified because it's different.
At the same time, she could spell her name (and recognize it in print) around 18 months, knew all her colors, shapes, letters, could count, as in count objects, not just recite numbers, all seemingly instantly without us doing anything other than what I would do with any kid. Yet, the strong will... I say almost without reservation that she could do pretty much anything she wanted to. However, the difference between what she can do and what she will do is huge. Her reading is getting stronger, but she tells me she doesn't like to read because sometimes she doesn't know the words. It's as if she runs from even the slightest bit of discomfort, be it in something being challenging, meeting new people (well, adults. She generally likes kids.) or trying new things. She had a big accomplishment at school last week because she tried the juice there, even though it's not the kind she has at home or the same kind of cups. I feel like others see that she's really smart, while in our day to day life, it's all about the struggle to do basic things that come so much easier to everyone else. Plus the intensity, and the anxiety. She's been very worried about both getting older/bigger and death. She keeps saying she wants to be littler or not get any bigger, and occasionally she announces that none of us are ever going to die, as if she could stop it through force of will. It's very upsetting to her and so hard to know what to say since I don't think there's anyone who doesn't struggle with mortality. It's just not usually at 4.
I have a friend with a Masters in Psychology who told me, at age 2, that my daughter absolutely has autism and needs to be treated and will probably need a special school. I realize the lack of professionalism in diagnosing a child, using no diagnostic tools, after an afternoon spent together, yet this has continued to haunt me. I know a diagnosis is not the end of the world, it's more that if it were true, I'm not getting her the help she needs. However, the more I research, the more her traits match up with gifted and not with autistic. Even though some anecdotal traits of people with autism are similar, any time I revisit the checklist of warning signs, they absolutely do not match up. Still, it keeps popping up in my head as another thing to worry about.
Over the summer we had her evaluated by an OT for the toileting issues and other sensory issues. While she does have some sensitivities, the overall conclusion was that "she's a challenge." Even her sensory issues are more "in her head" and context-driven than anything, and are all over the place, not consistent with SPD. They did a basic overall evaluation. She maxed out on the working memory test (where she had to repeat an increasingly longer set of numbers back) but otherwise nothing abnormal. While this test was not for autism, the OT said that is something that comes to mind with a really smart kid with sensory issues, but after the evaluation and time spent with her, they did not feel there was any reason to suspect it or to do further screening. The OT asked me if I was familiar with research around gifted kids and sensory issues and felt that was what we were seeing. We did do a few months of therapy, which she enjoyed, as a bridge to nursery school, but I don't think it did any good sensory-wise.
Nursery school started this Fall. Going in, the only thing I said to the teachers was a little about the sensory issues and toileting issues, since normally it is a no pull-up school. Sensory-wise, I let them know she gets uncomfortable in group settings and they may see her cover her ears for noise or just feeling like she needs to block something out. That's it, though. I didn't want to say anything about being gifted because I wanted to see what someone neutral saw without putting any ideas out there, and I'm just sensitive to that being something that can be touchy. Last week I spent a class with her for the first time, and observed how she did and didn't participate. She definitely stands out in a group of kids for doing her own thing... But absolutely paying attention because I could see that even when if she seemed to be doing her own thing, she'd suddenly join in when there was something she liked. After class, I asked the teacher if what I observed was pretty typical for her. The teacher got a little nervous, then said that in 20 years of teaching, she's never told a parent their child was gifted until my daughter. She said they've come to an unspoken understanding - there are hard rules about behavior such as not being disruptive, hitting, etc, but other than that they don't force her to do anything. She usually does participate, but often in her own way. In the teacher's words "she is thinking on a whole different level and we don't want to get in her way." Wow. I was floored. First, that they are so amazing with her, and for that I am so very grateful, but mostly because the way she talked about her is pretty much how I say it. So it's not just me. This was huge for me, but when I told my husband, his response was pretty much, "So? We already know all that." I don't know why I need that validation, but somehow I'm still insecure that she's difficult because we are bad parents and don't set enough limits. Not that we don't try!
I feel so lucky that her first intro to school is so positive. She loves it! However, we specifically wanted a non-academic school, and I think that's why. She's learning to operate in a group setting, play with other kids, enjoy time away from her family, etc. All things she needed badly and was so ready for. But what happens next year? I don't know that all teachers are going to see her that way, or that it's even realistic to expect her to be allowed to do her own thing in a large class of kids needing to learn. I'm obsessing over school, and I don't know what I can do to make it better. My experience with school was not good. I tended to be an under-the-radar kid so I just drifted through, and didn't feel engaged until my AP classes in the last two years of high school. My husband and my mother-in-law both had off the charts IQs as kids and much worse experiences with school - they are both more confrontational so I'm sure that's why it was more contentious. So my expectations are not good. Thinking back to myself, and what I would have wanted, I think it's either 1. a class of kids like me learning at my level or 2. to be left alone to read and learn because I was interested in everything. I feel like 1 is not likely - no schools for the gifted here. There is a gifted program at our elementary school, but honestly I'm not sure if that's even the answer. Even if there is more/harder work, I can't see my daughter doing well in a overly structured setting. She learns seemingly by osmosis - by exposure with a gentle nudge here and there, and really resists any kind of learning that's at too basic a level. I love the unschooling idea, except I don't know how we'd pull it off. Plus, she really needs time with peers and enjoys playing with other kids. I don't know what that will be like in a few years and especially once the differences become more clear, but the last thing I want is for her to be stuck at home and isolated. I wish she could stay in nursery school for play time and just continue to pick things up as she's been doing!
I think some of my anxieties are related to unresolved issues from my childhood - I find myself tearing up when I read about gifted kids and their needs, and thinking how much it would have helped me as a kid to know I wasn't the only one. I pretty much always was told how smart I was, as if that was something I should be commended for rather than something I was born with and couldn't control, while my own experience was that I was struggling with things no one else even thought about and couldn't understand. I felt I was on my own. I hope that my daughter will never feel that but I also don't want my anxieties and experience to color hers.
So, if you made it this far, thanks for letting me get this out. If anyone can tell me gently to chill out because it really isn't so bad, that would help, too :)