Parenting is complicated no matter the ability, disability, or ‘normal.’ After almost 21 years of parenting, I feel like I can say that with some authority. But this post isn’t about how well we have done; this post is a little woe is me and a lot of brain dumping as I need a place to process, and there doesn’t seem to be much for parents in a world like mine. It’s sad because I know there have to be many parents raising children like my girls, but there are so few resources and no tangible help.
To begin, I have always known that my girls were on the spectrum. I taught public school for almost 25 years and taught every age, stage, and development level. It didn’t matter that the schools didn’t recognize their uniqueness. My husband, Doug, and I did, and we managed. The schools did recognize the girl’s giftedness, almost immediately, but would not acknowledge their disabilities. It wasn’t a surprise. The girls functioned at school and passed their classes, and seemed fine. In parent/teacher meetings, their unique abilities were always dismissed as “quirky” or some other cute descriptor.
And so we were always at an impasse. What we saw (and see) at home and what we knew to be true has been a different world than what was on display at school and what the teachers were trained to see. And let me be clear, I do not fault the teachers at all. Unless you are a special education teacher, you do not have autism and learning disabilities training beyond the “big ones” like Dyslexia. Even then, it is a crapshoot at best. But what has bugged me the absolute most over the last couple of decades is that since the educational system itself does not know what to do with twice-exceptional (2e or 2E) kids, they ignore their needs and pretend like there isn’t an educational obligation to reach these kids.
But there is one. If the goal of education is that all students work at their ability, then ignoring the needs of twice-exceptional students is a failure. The safeguards for special education students are ignored for twice-exceptional kids; worse, twice-exceptional kids like mine can’t even get an authentic evaluation! Instead of offering evaluation and services, we have been told time after time that our girls didn’t need anything (since they passed the state grade level tests at the highest level..) and that we needed to adjust our expectations. We have literally had to threaten legal action to get 504 evaluations and meetings, even though we had documented medical expert advice.
So what do we do?
We walk on a tightrope covered in eggshells buffeted by swirling winds. Okay, I’m dramatic. But dang, I am tired. Every day is different. As a medical mama for almost 21 years, I know that life. I learned early what Maddie’s medical signals were and knew how to fight, when to step in, why she was struggling, and where to take her for help. But understanding the world of autism and learning disabilities, autism and anxiety, autism and ADHD, autism and depression, to put it mildly, is different. One of the best blogs on 2E kids I’ve read discusses how twice-exceptional kids are developmentally asynchronous. This is the absolute truth. Asynchronous development means that intellectual development is at one place while the social-emotional level is at another place. The greater the disparity, the harder it is to find a balanced approach to life (and parenting)!
My youngest daughter, Kylie who is eleven is a great example of this. In kindergarten she was tested for the gifted program. She scored one of the highest scores the district had seen for her age. But she refused to participate in any game, circle or classroom group activity whenever possible. She learned to read at some point before pre-k, (I don’t know when, has she always read?), has a memory in the 99th percentile, but she has a slow processing speed and a disability in math. From an educational standpoint, when I pushed to have her evaluated for autism, I was told that since she was passing all of her classes and wasn’t a discipline problem, there wasn’t a need. When I took the test results in and demanded that she have a 504 because the math homework load was causing nightly meltdowns, screaming fits and horrible evenings, the math teacher was shocked. She “seemed to be fine in class.”
And that is our greatest struggle.
Just because the world sees a child/teenager that seems to be fine, doesn’t mean that is the reality. What we have learned in the last couple of decades is that when kids like ours feel so deeply and process everything in such detail, that they have to have a chance for it to come out at night. And guess what? That means the parents get the junk. I am so thankful that we are a safe place for our girls to process life with, but I’m tired.
I’m not writing this for your sympathy or trying to sound like a martyr. Raising our girls is an amazing experience, a joy, and a privilege. But it is hard. And 95% of that hard is never seen.
So a glimpse into our world.
Obsessions have included:
- A three year fixation on the Fibonacci sequence, hand written in a notebook out to the quadrillions.. or maybe it was the septillions.
- Reading and AR points, earning over 100 in a single six weeks (in 3rd grade!)
- Building things out of hot glue and cardboard
- Money. The counting, the saving, the considering, the wondering… on and on. But no real understanding of how money works.
- Television series, movies made by the same actress, movies in the same genre
Refusals have included:
- Will not attend anything without mom/dad/sisters there, will not stay at an event without said family, will not spend the night anywhere without said family
- Took a zero on AR for a grading period because she didn’t want to test on a book that she had read
- Would not complete a project because it would come with a public award
- Will not take a class that would enjoy because others might see/know
- Will not participate in a group activity.. but refuses one on one lessons as well
Daily issues have included:
- Autoimmune disease and autoinflammatory responses
- Food sensitivity/allergies
- Extreme, yet inconsistent, food aversions and limited meal options
- Textures, noise and stimulation
- Shredding paper
- Not having an awareness of bodily needs such as being hungry or needing to use the restroom
- Crippling anxiety
And these are the easy and simple things.
I don’t wish for my girls to be any different than they are. I love them, their quirks, their passions and their ideals. But along the way, if anyone could have welcomed us into this crazy twice exceptional.. okay THRICE exceptional world, it would have been nice. Autism Spectrum Disorder is not so unheard of these days, but most diagnosis information is based on how ASD presents in boys. Therefore, our twice (thrice) exceptional girls are rare!
Research articles should you be interested in reading more:
- Click to access ED535140.pdf
- 10.1177/0016986208330565 http://gcq.sagepub.com