My 10-year-old daughter, the amazing and awesome Pork Lo Maniac, has been officially diagnosed with Asperger Syndrome.
The process of requesting her evaluation, being evaluated by the school district and then by a private psychiatrist, and developing an education plan for her, has taken almost a full year.
And we're still not done.
We're not done with the evaluations; a follow-up Occupational Therapy eval is scheduled for sensory issues, fine motor delay, and motor planning deficit. We're not done with the IEP. We're not done hashing out the details, like whether an FBA (Functional Behavioral Analysis, which in this case would help identify anxiety triggers, for example) is appropriate. Or details like exactly what kinds of therapies she needs, and will receive. Important stuff.
We are fortunate. The Pork Lo Maniac's teachers are amazing, and have been going above and beyond the call (and above and beyond the accommodations in her 504 Plan for ADHD) all year long. The school social worker got her into a social skills group before the evaluation was even complete. And the principal, who is in fact a God Among Educators, has backed our entire family 100 percent.
We are fortunate. We already know a lot about Asperger. We've spent the last two years navigating the world of special education and the remarkable quantity of acronyms associated with special needs.
We've also spent the last two years praising Little Dude's awesomeness, and crediting his Asperger as a huge part of what makes him the awesome Little Dude he is. We talk daily about how we are each unique, and how everyone in our family has things they struggle with, as well as things that come easily to them. We talk about the benefits of ADHD (hyperfocusing for the win) and the benefits of Asperger (narrow, focused interest for the win) all. the. time.
We talk about how we don't want to fix Little Dude, but rather to help him find the world less stressful.
So we're going into this in a completely different way than we were
when Little Dude was diagnosed at age four.
But it's still hard. No matter how well-prepared you think you are to hear the diagnosis, there's a certain amount of soul-crushing pain that comes along with hearing "
your child has autism." There just is.
One thing I can't emphasize enough is the thorough nature of her evaluation. The careful decisions made by multiple clinicians. The vast amount of input taken from not just her parents, but from her teachers and even her Girl Scout troop leader. The observations: in-home, in-school, and in a clinical setting with a "novel peer."
It was thorough. And the diagnosis is accurate. We have known in our hearts and in our guts, for nearly a year, that the Pork Lo Maniac has Asperger. She has been a part of the process all along. She wanted this evaluation. She wanted an understanding of how her mind works, and to know that she isn't "stupid" or "a monster," as she was growing to believe.
So right now, the overarching feeling is one of relief. Our daughter is relieved to know that there is a reason for her social difficulties. A reason she feels like the rest of us are speaking a different language. A reason she sometimes needs to shut out the world. And also, a reason for her consuming passion for all things Chinese, which has lead to her teaching herself Mandarin.
As parents, we have relief that the evaluation process is coming to a close, and we're going to be able to support our daughter in a way we couldn't without the diagnosis. We're going to receive parent training on better ways for us to help her with her meltdowns. She's going to get more support in school, and hopefully, a greater measure of understanding from everyone in her life.
One of the most challenging parts of this situation right now is helping her siblings process this, and in particular, the Pork Lo Maniac's twin sister, Cookie. Over the last year, we've had to entirely shift the way we parent the PLM, and Cookie has had to, in many ways, shift her thinking about her twin. The diagnosis ultimately helps Cookie
understand her twin more. But as a twin, there are ways in which this impacts her, in which it can never impact anyone else.
I'll write more about our epiphany about the PLM's Asperger Syndrome, and about the process of her evaluation, soon. It's common for girls to be diagnosed later than boys, and it's important to look at why that is, and how autism, especially in its higher-functioning forms, manifests in girls.
In the mean time, I leave you with this: as I said in a recent post on Strollerderby, anyone who thinks the autism or Asperger diagnosis is being handed out like candy, can
suck it, suck it, suck it.
I also had The Top 9 Lies I Have Told My Children. Because frankly if I didn't have lying and bribery to fall back on, I don't know how I'd get anything done.
