A Conversation With My Daughter

Do you ever have one of those conversations that just rip out your heart?  Last night, Mya and I talked, and I was slowly dying inside.  My heart ached for her, and I wanted so much to grab her up, and never let her go.  But, as you know, Mya won’t allow it. 

 When we have our “heart to hearts”, I have to be very careful, and not push anything.  If I ask too many questions, she will shut down, and the conversation is over.  I tread carefully, act casually, and hope to get a peek into her thoughts.

 Last night, I was successful, and it killed me inside.

 I had discovered earlier, that she had found a thumb tack at school, and used it on her hand.  At first she wouldn’t show me her hand.  She thought I was going to be mad, or disappointed in her.  After convincing her I was concerned, and needed to see, in case it needed to be cleaned and bandaged, she showed me.  As always, when she shows me her wounds, she looks at me and says, “I can’t help it, Momma”.  I know she can’t help it.  I told her we need to figure out a way to redirect.

 Our bedtime talk went like this:

 Me:  we really need to figure out a way to redirect, so that you have something with you, you can chew, or pick, instead of doing it to your body.  The problem is, we need to find something you can take to school with you, that won’t be a distraction, and cause you not to listen to the teacher.

Mya:  I know if I had something at school, I’m not going to listen. 

Me:  I know.  That’s why I need to think really hard about what we can use.

Mya:  I can’t help it, Momma.  I’m not perfect.

Me:  I know you can’t help it, and I don’t expect you to be perfect.  We all have flaws, and make mistakes.  No one is perfect.  That’s what makes us all unique.  I’m not perfect, and I would never expect you to be.

Mya:  I’m not unique.  I’m like Graci.  We both love dogs, we both have brown hair….

Me:  Yes, but Graci has brown eyes.

Mya:  I do too.

Me:  You do not.

Mya:  I can make mine turn brown.

Me:  You can’t make your eyes change colors.  we giggled

Mya:  What is special about me?

Me:  You’re very smart, you’re funny, and you’re full of energy.  It’s our uniqueness that makes people want to be around us, and be our friends.  If everyone was the same, it would be boring.  It’s much better to be who you are, than try to pretend to be someone else.

Mya:  I pretend I’m someone else, at school, all the time.

Me:  Why?  (I couldn’t help but ask why, but I know never to ask that question!)

Mya:  Because I don’t like who I am.

Me:  Why don’t you like who you are?

Mya:  I don’t know, but I don’t.  Can we go to sleep now?

 

Oh, how I wanted to ask so many more questions.  I know, when she’s finished talking, asking more questions only leads to frustration, and anger, on her part, so I didn’t push.

 I lay awake at night and think about her, and all she goes through.  I want to help her.  I crave to hug her tight and comfort her.

 This week has been a rough week for her.  We’ve had to bandage almost every day.  She comes home from school, completely exhausted.  Her lunch is hardly eaten, and she’s not hungry for dinner.

Just a glimpse into what I see most days.

 From the thumbtack she found at school:

 

 

 

Thankfully, this one was mild, compared to the time she used a lapel pin.  Nonetheless, it hurts to see your child hurting inside.

 She explained to me, when she did this, she had a really hard time picking off the little pices of skin sticking up, that’s why there’s still some left on there.

 I asked her if her teacher sees her do this.  She said, I think sometimes she peeks, and sees me.  Like today, I think she peeked and saw me, so I hid my hand under my desk real quick.  If she sees me, she will send me to the nurse, and I DO NOT want to go to the nurse, she’s mean.  She also added, sometimes I pick, and it bleeds, and my friends see it, and I tell them not to tell the teacher, but they do it anyway.

Several things to notice in this one.  First, notice the fingernails chewed off.  That’s the norm for her.  Second, notice the “tall man” fingertip being chewed.  And of course, the obvious one, the chewed place on her hand.

 

 

Here, she’s chewed the tip of her thumb.

 

 

 

These were all taken this week.  When she chews, she chews down far enough, she bleeds, and the places stay sore for several days.

 

This might explain why she's been exhausted this week.  The anxiety has surely been high.

 

We get by, and take it one day at a time.  I just hope, in the near future, we figure out something and move past this. 

 

 

Into Her Head

Into Her Head
Living with Anxiety and OCD

Imagine not sleeping at night. Dreams haunt your sleep, you reach out constantly for reassurance you’re not alone.




I don’t want to die.




Imagine waking up each morning, dreading the idea of facing the day ahead of you. The people, the noise, the chaos.






I don’t want the world to burn in fire.



Imagine being afraid of what people are thinking of you. Why are they laughing, are they making fun of me? I can’t choose this outfit, someone might think I’m a boy. Or maybe they will think I’m too prissy. What if they think I’m not good enough? What if they think I’m a bad person? Why are they looking at me? How can I hide? I need to change the way I behave so I am more like them. Or, maybe if I act like someone or something completely different, they won’t see me.




I want to live forever.


Imagine you are not worthy of love. You won’t let anyone close to you. You won’t accept love and friendship from others. Never let them see you.




But, what if I die.




Imagine being in a crowd of people, scared someone will touch you, talk to you, or look at you.



I’m never good at anything.



Imagine wanting to speak, but your mind won’t allow your lips to move. You’re frozen.



I hate my life.


Imagine your every move is being monitored, and judged. All eyes are on you, and your actions. What if you say the wrong thing? What if you behave in a way that’s not appropriate for the situation? What if they don’t like you?



Do you think I’m weird?




Why am I different?


Now, imagine your 9 years old. You’re not able to understand, let alone deal, with these thoughts and emotions.





Mental health issues in children are very real. Anxiety and OCD are very real.

It has taken us years of pushing doctors, teachers, and mental health professionals, to get her tested, and to get a diagnosis.

Mya knows how to camouflage herself, and will go into role play so she can fit in with her peers. No one knows the internal struggles because she’s learned to hide it well. Except when it comes out, as shown in the pictures above.

We decided to medicate a year or so ago. That was one of the most difficult decisions we’ve ever had to make.

My recent discussions with the doctor involved the use of Benadryl to calm her, and help her sleep. I’ve bought the Benadryl, but I can’t bring myself to give it to her.

When I was buying the Benadryl, I also had to buy more Band-Aids. It all hit me like a truck. Instead of buying my daughter Hello Kitty lip gloss, or nail polish, I’m buying her Benadryl to calm her so she can sleep, and Band-Aids to cover her self-inflicted wounds.

Most kids love to be hugged and snuggled. Our daughter doesn’t want to be touched or comforted.

Most kids jump right in during a party or play date. Our daughter only chooses to play with the ones that know the real her. No outsiders are allowed in.

Mya is quite the chameleon. She observes her surroundings, and adapts. But that’s not the real Mya.

The real Mya is smart, talented, beautiful, and funny. Her smile can light the night. But you won’t see that, unless you’ve been invited into her world. Into her way of thinking. Into her head.

You Should Really Stay Away From Google

When I took Mya to the doctor last week, that’s what he told me. I get it. There are people (you know who you are) that can Google something small and suddenly feel like they have the black plague, and will die at any moment. When I Google, I try my very best to do it with an open mind.

I’ve spent the past 5 years Googling more things than any parent should ever have to Google. Why? Because no one else can answer my questions. Why? Because they don’t see it, and no one will listen to me.

I kindly told the doctor that I will continue to use Google to find the answers I’m searching for. In my opinion, information is knowledge.

When I received the letter from the Weisskopf Center that showed their latest findings, after spending 30 minutes with Mya, there were words listed I had never heard. What did I do? I Googled them. What did I learn? The lady that did the evaluation didn’t hear one word I was saying. It’s in these times where information is knowledge. Now that these 3 items are on Mya’s record, when I take her to the doctor, or to see therapists, I can explain to them, this is not what’s happening. This is not the problem at all.

I’ve Googled every little thing I can think of, and I’ve Googled behavior combinations. I also observe those around me, and this isn’t my first child, so I know when something isn’t quite right. I know which behaviors should have stopped years ago, which behaviors demand attention from a professional, and which behaviors are typical in a 9 year old.

Google can be a great thing for someone searching for answers, and the appropriate place to have concerns addressed.

If only someone would listen. If only someone would open their eyes and see.

I’m very thankful our family doctor was able to see the real Mya, and not the girl she portrays when in a tense situation. Had he not seen it, we wouldn’t be as far along as we are today.

I’m sure, now what we’re seeing a new therapist, I will get more information to Google. Like OCD, the latest to be added to her diagnosis.

I’ve only Googled OCD one time, and to be honest, when the doctor was explaining certain behaviors, it made sense, but the things I’ve found online haven’t been so clear.

When I’m faced with these things, I know then, it’s time to ask the doctor, or therapist. That’s when I stop “Googling”, and seek the advice of a professional.

See, I can Google responsibly!

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