Not So Perfect

This is Mya. Mya will soon turn 9, and has asked for motorcycles, dragons, Pokemon toys, and Transformers for her birthday. Mya loves to play with Paw Patrol toys, but has a fascinating interest, and love, for her dragons. Mya is my not so perfect, super smart, silly, artistic daughter. I was going to use the term imperfect, but that means defective, and she is not defective, she just lives her life differently than you and me. In a nut shell, we think she’s pretty awesome, and couldn’t love her more.

In the past 5 years, I’ve noticed Mya is “different”, and put it off that she is being raised by maternally aged parents (yes, that’s what they call it), and was used to being around adults, more than her peers. I thought it would get better when she started Kindergarten. I thought 1st grade would be better, 2nd grade was a complete nightmare, and now that 3rd grade is coming to an end, Mya has a deep dislike of school, and anything educational. In the school testing, she scored superior in reading, and I was told she reads on a high school level. I struggle every night to get her to read for her reading log. She has no interest. We’ve bought book after book, hoping to find something that would peak her interest in reading. Nothing. Give her a picture book, and she will look at pictures all day, but don’t ask her to read anything. Instead of forcing her to read 20 minutes each night, and making her dislike reading more than she already does, I let her choose her childrens books for her reading log.

Mya thinks she has the soul of a dog. She plays like a dog most of the time. She has begged us to buy her a dog bone, and collar. I discovered one day she had hidden dog treats in her room. The treats hadn’t been bitten, but I don’t guarantee they weren’t licked. When she was 5, I put this off as imaginative play. She will be 9 in a month, and acts more like a dog now than she did when she was five. She will lick herself to “clean” her arm, or to “soothe” something that may hurt. She will crawl all over the yard, playing like a dog, even rooting her nose in the ground as if she’s sniffing and digging.

Mya has officially been diagnosed with general and social anxiety. A little over a year ago we started her on medication for the anxiety. The medication has helped the general anxiety tremendously. We no longer lay awake at night worrying about Every. Little. Thing. We no longer answer a million “but what if” questions. We no longer have nightmares. It has truly helped the anxiety. I hesitated to use medication, but it started to affect her health. Her hair started falling out. She lost 13 pounds. She slept A LOT. At that point in time, I had no other choice.

I’ve asked doctors for years to help me. I’ve told them all the things that were concerning. Everyone had the same answer. She seems fine to me. Every year, we get more, new behaviors to add to the growing list. Self-harm, hoarding, pulling her eyelashes, to name a few. Again, she’s fine. Or, it’s the anxiety.

I’m at a loss. If the medication helped the anxiety so much, why are we still seeing all these behaviors? Why does she not have friends, or work to maintain a friendship? The one girl she calls her friend is mean to her, and Mya thinks that is okay. It’s not! Why does she decide to become mute when someone speaks to her? Why is she fidgeting in class? Why is she scared of the vacuum cleaner? Why does she not like hugs, or affection? Why does she act like a 5 year old, instead of a soon to be 9 year old? Why can’t she tie her shoes, ride a bike, button her pants? Why? Why? Why? No one will answer my questions. Do you know why? Because when Mya is one on one, she sits quietly and politely answers questions. She’s not swinging from the ceiling, acting like a beast. She makes the honor roll. She’s the perfect student, so no one pay attention. Because the school doesn’t see it, and the psychologists rely heavily on the schools input, I get nowhere.

I have secretly suspected Aspergers for a couple of years now. When I would search Aspergers, and read the traits, it just didn’t fit. I recently found an article telling how researchers are finding that girls exhibit different traits. I searched traits in girls. I was convinced this is what we’re dealing with. When we recently had her evaluated, I showed the lady the traits, and was immediately told “we no longer diagnose Aspergers”. I knew that, but exhibiting the traits puts her somewhere on the spectrum. “Since Mya can carry a conversation, she’s not on the spectrum”. It’s all anxiety. This was determined after meeting with Mya for 30 minutes. I was so disappointed. Another school year gone, and we’re no further along than we were when I started questioning 5 years ago. Here’s a few things from the Aspergers article:

Girls often use constructive coping and adjustment strategies to effectively camouflage their confusion in social situations and may achieve superficial social success by imitating others or avoiding engagement in interpersonal situations. A girl with AS can become an avid observer of other children and intellectually determine what to do in social situations: learning to imitate other girls, adopting an alternative persona, and acting as someone who can succeed in social situations (in effect becoming a social chameleon). They constructively avoid social interactions with other children, choosing instead to engage in creative solitary play, read fiction, or spend time with animals.

There can be aspects of sensory sensitivity, especially tactile and auditory sensitivity, resistance to change.

Parents notice that their daughter may not identify or want to play cooperatively with her female peers. She may consider that the play of other girls is beneath her—boring and inexplicable—and prefer to play alone so that she can do things her own way. Her interests can be different from those of other girls

She may prefer nongender specific toys such as Lego or playing with toys associated with boys, such as construction sets and vehicles.

Since it is inevitable that there will be times when she has to engage with other children, the girl with AS may well prefer to play with boys, whose play is more constructive and adventurous rather than emotional and conversational. Many girls who have AS have described to psychologists and in autobiographies how they sometimes think they have a male rather than a female brain, having a greater understanding and appreciation of the interests, thinking, and humor of boys. The girl may be described as a tomboy, eager to join in the activities and conversations of boys rather than that of girls

The adolescent girl with AS may not follow society’s expectations of femininity; for example, she may prefer to wear practical, comfortable, somewhat masculine clothing rather than dressing in a fashionable or feminine way.

During their adolescence some girls with AS are known at school for their good behavior. A strategy often used is to be extremely well behaved and compliant in class so as not to be noticed or recognized as different by the teacher.

However, the girl with AS increasingly recognizes her own social confusion and frequent faux pas. She may react by trying to stay on the periphery of social situations (to not be noticed in a group) so that others remain unaware of her social confusion. She may develop a pathological fear of making a social mistake, and intense performance anxiety in social situations with peers can lead to selective mutism, an inability to speak when talking is expected.

A girl with AS may suffer her social confusion in silence and isolation on the playground yet be a very different person at home. The “mask” is removed, and she may use passive-aggressive behavior to control her family and social experiences—the opposite of the cooperative and compliant child at school. The confusion, tension, and suppressed emotions that occurred during the school day are released with some ferocity, such that she has almost two personalities: the meek school girl and the defiant, argumentative, and emotionally volatile daughter at home.

Imitation. Some girls with AS adapt to being different by engaging in imitation. The girl may identify someone who is socially successful and popular, either a peer or a character in a soap opera, and adopt that person’s persona by mimicking speech patterns, phrases, body language, and even clothing and interests. She becomes someone else—someone who would be accepted and not classified as different. She learns how to act in specific situations, a strategy so successful that people may not be aware that the social abilities were a performance achieved by intellect and imitation rather than intuition and inspiration.

Girls who have AS can be like chameleons, changing personas according to the situation, with no one knowing the genuine person. Often the girl believes that the real person must remain secret because she fears that person is defective and must never be revealed. However, this coping strategy leaves her exhausted, and like Cinderella at the ball at midnight, she cannot keep up the social charade indefinitely. When she returns home from school, she cannot tolerate any more social experiences—even with family members.

Imagination. Some girls with AS may not seek integration but instead escape into imagination. The girl might feel that if she cannot be successful with her peers, she can try to find an alternative world where she is valued and appreciated. She may identify with a fictional character such as Hermione Granger of the Harry Potter series, who faces adversity but has special powers and friends. If she feels lonely, then talking to imaginary friends can provide companionship, support, and comfort. Alternatively she may develop an interest in ancient civilizations to find an old world where she can feel at home. Or she might acquire a fascination with another country, such as Japan, where she might be accepted and among people of like mind. She may develop an intense interest in science fiction or in the fantasy worlds of fairies or mythology. Many typical children occasionally enjoy escaping into imagination, but for the girl with AS, the reasons are qualitatively different. This is not evidence of the potential to develop a psychosis but rather the fantasy world becomes a constructive means of avoiding (not distorting) reality and experiencing a relatively safe, successful, and alternative social life.

What I’ve listed here is the majority of the article. This is what we see and live every day.

It took a few visits to our family doctor before she became comfortable enough to be herself at his office. Until she shows her true self, you don’t see it, and you won’t understand. It’s there. Anyone that’s in her “comfort zone” sees it. Why can’t the professionals listen to what I’m telling them? It’s my daughter, and I know her more than anyone else.

One of the new things we’ve seen recently is unexplained bathroom accidents. Mya doesn’t realize she’s doing it. And I know one incident, she didn’t realize it, even after the fact. We recently had a sleep deprived EEG to rule out seizures. The EEG was normal. Again, one more unanswered question to add to the list.

My last hope is the appointment with the pediatric Neurologist. I hope we’re able to get some answers there. I’m not sure what the extent of diagnosis will be, but I’m hoping we get more than we currently have.

People don’t understand why I don’t just accept what is, and move on. I will tell you. Mya struggles, both inwardly and outwardly. Without a diagnosis, I can’t get her help. I can’t get her what she needs at school. I can’t get her what she needs as far as therapies to help with anxiety, the self-harm, the accidents. I can only continue to ask questions and hope someone will one day see what I see.

Our most recent “episode” with Mya happened at school, and I think it shocked us all. She threatened a girl in her class. The kind of threat the schools frown upon, and had she been in a larger school, say in Chicago, she would likely have been suspended. We dealt with it at home, and I gave the school permission to deal with it as they see fit. Of course, since this was the first time she’s ever been in trouble, she didn’t get in a lot of trouble. It will, however, go on her school record. It’s policy. I hope this was a one-time incident, and she’s learned her lesson. Time will tell.

My last meeting at the school was to implement a 504 plan, which would allow Mya certain accommodations. While I'm okay with it, most of the items listed, are listed “as needed”. If she gets a teacher that doesn’t want to bother, it worries me it won’t be needed. I worry we will have another year down the drain.

At what point do people stop, and look, and say, “so that’s why her grades are slipping”, or “that’s why she fidgets at her desk all day”. Why am I the only one seeing with my eyes open.

Wish us luck in finding help. We need it.

Signed,
Desperate Mom