Scar

As you may have figured out by now, we have daily struggles with Mya, and her anxieties, and OCD.  Every day, when I pick her up, I’m always drawn to her hands.  The reason being, every day, she had a new place where she’s picked or chewed.  I don’t think there’s a day in the week where we don’t have to apply Neosporin and a Band-Aid.  It has become a part of our life.

On Facebook, I recently posted some pictures from a themed photo shoot, where Mya was dressed as Scar, from the Lion King.  I knew she would want to be Scar, because any time she can get an opportunity to portray an animal, she’s all in. 

The other day, the photographer posted another of Mya’s pictures, and I immediately saved it to my files.  Since all of my family and friends don’t have Facebook, I always send out a bulk e-mail to include them in our day to day lives.

Here’s the picture that was most recently posted.

 

I immediately shared it, via e-mail, with those who aren’t on Facebook.  Never in a million years did I expect this response from my Aunt:

 “While other people will get caught up in how beautiful she is, the expression on her face, the look in her eyes, her fabulous hair, etc….

I was immediately drawn to her fingers.

How many people will notice how ‘worn’ her cuticles are?

To me, her fingers reveal more of the spirit of ‘Scar’ than the make-up on her face.

The struggles, the life and death situations, the toughness, are hidden behind the mask so beautifully painted and portrayed.

But, beneath the character in the photograph, lies a child who deals with the untold struggles of a child with an anxiety disorder.”

I have read it a million times, and haven't stopped thinking about it.  I couldn’t believe I wasn’t the only one that immediately noticed the places on her fingers.  Someone who can relate, who has lived it, and who understands the struggle.  While sad to think about, it was a breath of fresh air.  I’m not alone in this.  I have the love and support of so many.  And for that, I’m very thankful.

Later she responded again, with this:

“A scar is born out of weakness.

The delicate skin is torn.

It heals, from the inside out.

Almost impossible to tear, a scar is tougher than the original skin.

 

While others see the scar and realize that you’ve been hurt,

You can look at the scar and appreciate that you are stronger than you used to be!”

 

I’m in awe.

 

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

All Aboard

I’m going off the rails on a crazy train…..

As you likely already know, Joe, my brother, isn’t doing well. He continues to lose weight, and every time I see him, he looks weaker and weaker.

I don’t think I’ve blogged about my brother. About 8 years ago he had a very large melanoma removed from the side of his head. He went through a partial chemo treatment, and then life happened. He didn’t finish his treatments. For the past couple of years, he’s not felt quite right, and made numerous trips to various doctors, hoping to find one that would run a PET scan and check for cancer. Last year he went to the Brown Cancer Center, supposedly one of the best in the Country, and they assured him if the melanoma had no returned by now, it wasn’t going to return. They sent him on his way, and told him he would be fine. This summer, he continued trying to get a doctor to listen, and actually do some tests to see what’s going on. It wasn’t until he got sick and went to the ER, thinking he had pneumonia, and got a chest X-ray, and a mass was found on his lung. That was a little over 2 months ago. Since then, we’ve learned that the cancer is Melanoma, it’s Stage IV, and it has spread to various bones, including 7 spots on the spine, his lymph nodes, and various other parts of his body.

Last week he went for a scan so he could be marked for radiation. They said it may be up to 2 weeks before he can start radiation. He goes to the cancer doctor this week to see if they’ve determined which chemo will respond best and help slow the progression. Here we are, over 2 months in, and nothing has been done. I see him gradually decline with each passing week. Sure, he has medication to help with the pain, but right now the best pain therapy would be radiation. While we’re all quite aware there’s so cure for Joe, and this can’t be fixed, we would like to see him live out the rest of his life as pain free as possible. So far, it’s not going so well. Why is everything so difficult?

On the other side, I’m still fighting to get Mya evaluated. I ended up scheduling a meeting with the Superintendent of the school system. It wasn’t until that meeting was scheduled that I finally received a call from the lady over the department that handles the evaluations. Why has it taken 6 months, and a meeting with the Super, to get someone to return my call? When I go for my meeting, I will make it very clear to him that there’s a major gap in the system that needs to be addressed.

I’ve been at this since Mya started Kindergarten, and things are not getting any better. Of course, the anxiety medication has made some major improvements in some areas, but there are other areas where we continue to struggle, and those are only getting worse.

While waiting for the school to call me back, I’ve also had her to the doctor, talked in depth about my concerns, and asked for another referral to the Weisskopf Center. I had to call the office again when I hadn’t heard anything from anyone. And then, when I happened to be in the office for blood work, I asked if she could look and see if anything had been done. Apparently it hadn’t. Go out another 2 to 3 weeks, and I’ve still not heard anything, I try my luck contacting the Weisskopf Center direct. It wasn’t until today that I finally learned her referral was received and processed yesterday. I should be receiving the packet that has to be completed and returned. Once they receive the packet, we will go on a waiting list. I asked about the wait time. 6 months. After 6 months of trying, I get to wait another 6 months.

My daughter is hurting herself, and I can’t get her help. My daughter has so many other things going on, but I can’t get anyone to hear me.

Why does a person have to scream from the rooftop to be heard?

Bob is having some issues that we’re trying to address. Tests ran, more to be done today. He goes for a follow up in 3 months. I’m quite shocked his doctor doesn’t want to see him sooner to go over the results in person. No, his doctor lets the nurse call you with the results. But, what if I have questions that the nurse can’t answer? I have to wait another 2 or 3 days to get the answers? Or, do I do the most logical thing and Google it? There’s fuel for the fire.

This is life we’re talking about. Not a broken bone that can be casted, but hard core serious life issues. Why do I feel like it’s not as important to those that can truly help?

So, this has been my mind clutter for the past 6 months. I think I should probably go ahead and make an appointment for that rubber room. With the paperwork, office visits and wait time I would likely face, I’ll be ready for it by the time the red tape has cleared. 

TTFN!

Michelle Obama Can Shove Her Broccoli

Last year the school starting giving kids “healthy eating” talks, as part of the “Let’s Move” campaign. While I’m a firm believer in healthy eating, I do not think it’s the schools place to put our children on diets. I feel it is my responsibility to raise my children; the school is there to educate my children so they can be productive members of society. I know that sounds hypocritical, but as a parent, isn’t it my responsibility to feed, clothe and assure their safety and well being? Then why does the school feel the need to step in to my area of responsibilities?

My daughter started hearing the lectures in 1st grade. Now, there are ways to go about teaching children to be healthy and active, but reinforcing the word FAT is not one of them. In 1st grade, my daughter started refusing to wear certain clothes “because they make her look fat”. Mind you, my daughter is anything but fat!

Let’s skip ahead to 2nd grade, where my daughter is leaner than she was in 1st. A week or so ago, I attended a healthy eating lecture at the school. Again, it’s great they want the kids to be healthy, but the way they’re throwing this out to the kids, is in no way healthy for developing minds. Fat is a bad word. It’s bad to be fat. Those were the ideas I was left with when the lecture was over.

My daughter has told me the cucumbers she eats all the time are going to make her fat. About a week later, she told me she shouldn’t be drinking milk, because it is making her fat. She will show me her belly and comment on how fat it is. Notice the word fat being thrown around so freely? Just this week, she showed my Mom her belly and told her “look how fat it is”. My Mom showed her the ribs sticking out, both on her sides, as well as on her chest.

MY CHILD IS NOT FAT! PLEASE STOP WITH THE LECTURES THAT MAKE HER FEEL THIS WAY ABOUT HER BODY!

Not only are the lectures putting body image issues in her mind at an early age (that will come soon enough, thank you very much), it’s also teaching her that overweight people are bad. I don’t want her to think overweight people are bad people. There are people with health issues, beyond their control, that cause them to keep extra weight. I don’t want her to look at people, and judge them, based on their size.

My daughter doesn’t always eat healthy, but, for the most part, she does very well. On the flip side of that, and this seems to be an “after thought” in the lectures, she’s very active. She’s not ADHD active, but she has been known to climb a few walls. When I went to the lecture at the school, they briefly mentioned activity being part of a healthy lifestyle. I know diet and exercise are the key to a healthy lifestyle. If the schools are so head strong on making sure our kids aren’t FAT, then why did they take away P.E.? When I was in school, from 1st through 8th grade, we had P.E. every day, for an hour. AND!!! we also got 10 to 15 minutes of recess every single day of the week. We had the FAT laden food the cafeteria served, we weren’t obese. Now, the kids get P.E. once a week, and recess is not ever guaranteed. What happened there?

I want my kids to be healthy, but I don’t want my kids to be unhealthy. When my already thin 7 year old thinks she’s fat, we’re not heading in the right direction. At this rate, she will be anorexic by the time she’s 10. I think we need to rethink our goals and training for a “healthy lifestyle” for our future. In my opinion, the first step should be eliminating the word FAT from the lesson.