Fast Forward about 5 yearsMay 12, 2020
During this pandemic under home lockdown, I decided to dig up the remnants of Teachhertofly a blog that was deleted about 5 years ago. Why was it deleted? Abigail stumbled upon it.. a screen left open, her life spilling out onto the pages. Teach-her-to-fly was a blog to journal what we were going through as a family. A blog that I found was helping other families too! But she did not see it that way. Even though I had changed her name and the names of others, she found it an intrusion on her privacy. In anger, knowing my commonly used password she deleted the blog. I was not angry, I was extremely sad! Sad that I lost her trust again, sad that she didn't understand why I felt it so important to share her story, and sad I had lost an outlet that was very helpful in processing how to help her. The publication of that blog taught me so much about Select Mutism, Social Anxiety and OCD. But more than anything it taught me to look at my daughter from a place of empathy, to be purposeful in my relationship, and to watch her grow.
Today is her 17th birthday and although she still did not want a cake with candles and the dreaded birthday song, we all ate Chinese food (take out order of course) and enjoyed a quiet evening at home. No drama, no tears, but also no big party, just stuck in the middle. I wish her "Happy Birthday".. was a bit more exciting for her like it is for others, but attention is something she still shies away from. This date still makes me pause to remember that she is not like most kids her age, but it's not JUST because she has anxiety, OCD, and SM. Abigail is Abigail, and with each passing year being her mom I learn more about who she is.
Abigail asks… “What’s select mutism?”
Two days into the new school year and Abigail was already starting to become
discouraged.
The first day of school was the only day she completed entirely. That night she expressed
her anxiety. Her words, "I'm stressed out!" "These are the same kids I remember from the
5th grade, and I don't like any of them."
The next morning I was hopeful that she was resolved to go, as she was dressed and
ready. However as soon as it was time to leave, I rounded the corner to the stairs and saw
her at the top curled into a ball. I climbed the stairs and her water works turned on. "I can't
go, I just hate it!" That day and each of the following, I understood she needed to slowly
work up (exposure therapy) to attending school full time.
On the second day upon returning home after attending a couple hours at school, Abigail
opened up. I had been explaining that everyone has to adjust at the beginning of the
school year. "How come everyone else doesn't get nervous when they have to talk?"
Now I'm betting most people who are following this blog assume my daughter knows that
she's been diagnosed with OCD, Social Anxiety, and Select Mutism. We have discussed
what it means to obsess (worry) and be compulsed to do certian things (excessive
showering, hand washing, ect.), but we had not brought up her history of select mutism.
WHY?? Because I did not want to label her and have her cling to that label. I made the
mistake of labeling her shy when she was younger, and that back fired big time! She then
clung to that label and I believe in her mind it her an excuse to not talk or interact with
people other than her family.
But considering her need to be seen as normal I decided she would NOT cling to this
label. However I was afraid telling her would make her upset, because like I said she was
striving to be like everyone else. A fine line I have to tread between advising her to accept
that she is having a hard time and working through it, and telling her there is NOTHING
wrong with her. We are all human with our many differences, strengths and weaknesses.
7/20/2018 Gmail - [New post] Abigail asks… “What’s select mutism?”
https://mail.google.com/mail/u/0/?ui=2&ik=48bb83572f&jsver=hICmByCRTiM.en.&cbl=gmail_fe_180711.12_p1&view=pt&q=teach%20her%20to%20fly… 2/3
"Abigail the reason you have a hard time talking is because you have anxiety when it
comes to talking. It's called Select Mutism."
"I have a disease!!"
She used a voice that was half worried, half joking.
"No, a disease is when something goes wrong with your body." "Select Mutism simply
means you have a hard time talking when your not around people you feel comfortable
with."
"How many other kids have this?"
"A lot of children, and adults." "There's a Youtube video that I think you may be able to
relate to."
She did not want to watch it, but I told her to just keyword search Select Mutism, and the
name of the author. About an hour later, she came to me and said... "At least I'm not that
bad, or that sad."
Yes, I am thankful she can and will talk when asked a question. However I would like her
to get to the point where she can express her needs, and wants. To be open and converse
with other kids and adults. To only use your voice when you absolutely have to, must be a
very hard existence. It's so easy to fall behind in school when you can't ask questions. So
easy to fall pray to peer pressure when you can't speak your values. So easy to loose your
dreams when you can't voice your wants!
I Cannot rescue you
Seeing Abigail every morning when I implore her to wake up for school makes my heart
cringe. Blankets pulled over her head "I can't do it, please let me stay home!" I can feel
her anxiety, not wanting to get out of bed and start another day. I then have to walk a very
careful tightrope of being firm, but not send her over the edge. Getting upset with her will
cause her to pull inward and give up. So I work at easing her anxiety, and explain to her
that she has the ability to rise up and be strong. I know she can work through her angst,
and that I expect her to do what I know she can.
"You got through yesterday, you WILL get through today!"
"The more you do something hard, the easier it gets!"
"Now get out of bed, or you will lose your computer!"
"The school and I are bending over backwards to help you, now it's your turn to work with
us."
"The longer you lay here and worry, the harder it becomes to JUMP!"
"You have no idea what your day will bring."
"Now get up, or I will take your blanket!"
That last threat is a tricky one. Most parents would do just that. But in the past this has
backfired. I touched her blanket to pull it away, then I was not only dealing with her anxiety
to get up for school but also her OCD monster came out in full force. "Get out of my room,
take the blanket you touched it!" And then she would purge everything in her room that
she believed I touched.
Getting Abigail out of bed for school the past two weeks has become my hell. I believe it
would go faster and easier if I could focus only on her. But I have 2 other children that
need help getting ready and rides to school. My 2 yr old also demands a lot of attention!
So most mornings I march up the stairs 10+ times to give her those above pep talks. Well
at least I'm getting my exercise. Thank God for coffee!
by bmw0512
Thoughts on SA from Abigail's father -
Days, even weeks before a meeting I would start to worry. The pit of my stomach hurts
day and night. I can’t stop myself from thinking about this over and over again. I even
have nightmares about it. I can make myself physically ill thinking about it. This consumes
my life until the fateful date of the meeting. As the day draws closer my anxiety is through
the roof. I desperately try to think of a way, any way to get out of attending. I just want to
climb in a hole and hide.
Some of the things I worry about are:
will I be asked a question
what if I don’t know the answer
maybe my answer will sound dumb
people will think I’m stupid
what if my voice squeaks
what if I can't talk
what if I walk in late
will my clothes look all right
where will I sit
what if I have to sit next to someone
what if someone makes a joke
should I laugh at it
will my laugh sound funny
will I smell funny
will I have bad breathe
what if I have to go to the bathroom
what if someone wants to make small talk
should I have some predetermined topics to talk about
what if I don’t say anything
what if I trip when I walk in
what if the zipper on my pants is undone
what if I don't know anyone there
will it look bad if I sit at the back of the room
everyone will look at me when I walk in
don't make eye contact with anyone outside of your friends
As the day of the meeting arrives, I’m sick. I didn't sleep the night before, my anxiety
overwhelms me in every way. The sick feeling in my stomach spreads to the rest of my
body. I start to feel a strong tightness in my chest (I question if I’m dying). At least dying
would be better than going to the meeting. My body feels as if a floodgate has opened. My
hands become rivers, the sweat dripping. Only my throat remains dry, making it near
impossible to talk.
The 30 minute meeting feels like an eternity of time. I have spent countless hours thinking
and worrying about this meeting. Ok only 5 minutes left, so far so good, I can see the light
at the end of the tunnel. If needed I can excuse myself and go to the bathroom. That will
use up the last few minutes of the meeting.
Wow I made it. See that wasn't so bad. Oh wait this meeting happens once a month.
That means I only have 28 days until the next meeting.
Link below - Understand their children's avoidance behavior and safety seeking actions
induced by ongoing emotional unrest.
http://www.childhealth-explanation.com/social-anxiety-pg3.html
bmw0512
Hitting Rock Bottom (a second time)
Last year we saw Abigail go through depression, not leaving the house for over 3 weeks. I
dare say this time seems worse.
Hopeless words shared with me...
"I'm never going to be normal."
"You just don't understand how sad I feel."
"I can't stop these thoughts."
"I want to murder my brain!"
"Nothing/no one will ever make me feel better."
"I'm the worst person in the world, I can't do ANYTHING!"
All she wants to do is cry to me about all of her sadness. She has ceased trying to do
anything! School is at a halt, although we are in the process of enrolling her in an
alternative online school program. She has not gone to horseback ridding lessons in
weeks due to scheduling conflicts. We have a lesson today, but she says she will not go.
She is worried that the instructor will ask how she is doing and how school is going.
Every night she complains that she can't sleep. Hourly she comes to me saying she can't
stop her worries. I AM EXHAUSTED!
Over and over for the past year I have discussed with her what we all believe is going on
scientifically inside her brain. The deficiantcy of seritonin can cause all of this misery she
is going through. Therapy (CBT) often times can not work until anxiety is lowered. Parents
who have witnessed similar situations that their kids are battling know exactly what I mean
when I've explained to her...
"There is something that can help your brain to receive that needed serotonin."
"If your tummy aches from hunger, you feed yourself."
"If your skin is itchy and dry, you moisturize."
But even with all the logic this mama could delve out, she would refuse this help I was
referring to. Saying that step would PROVE that she was not normal. "Normal people don't
have to do that." "You'll just tell everyone!"
Yesterday after having yet another conversation about needing more serotonin she said
something that made me realize she was coming around to the idea. "But it would take 2
weeks until it would work, and your just going to tell everyone."
And even more so last night. "Why do we have to wait till next week to talk to the doctor?"
"No one cares!"
This mama does!! I insisted on a phone appointment ASAP! Her doctor emailed me and
agreed to get "Operation more serotonin in Abigail's brain" started before the upcoming
weekend! I wish the 2 week wait was more like 2 hours because this Friday is Halloween.
Her first Halloween that she will be going as.... Nothing :( I hope she changes her mind
and will at least try to go trick or treating!
I miss sleep
For Abigail it's a vicious cycle of being selfish, then feeling guilty. I understand when she is
being anxious about something, she gets so wrapped up in how the anxiety is making her
feel, that she fails to see how it is affecting others. Still at 2 o'clock in the morning when
she opens my door letting in bright light from the hallway, I have a hard time being
empathetic to her anxious, OCD thoughts.
"Mom I can't sleep."
No she did not think about lowering her voice, so as not to wake her baby sister. Or think
about the fact that I have to be up in a few hours and desperately need my sleep in order
to put my happy face on in the morning. No, she thinks only of herself!
"Mom I can't get to sleep without Fluffy (her cat), I've looked everywhere for him".
Not the cat ritual again. She often seeks out Fluffy to stay in her room at night to help her
sleep. Knowing that she surely has been looking for a while, I know what awaits me
downstairs. All the lights will be on (she never turns them off behind her), and both the
front and back door will be unlocked (after she opened them both and called out to the
cat). Tempted to just let it go, and hope the robbers will take all the kids' toys left on the
floor, I roll over and pull the blanket over my head blocking out the hallway light that she
left on with my door wide open.
"Mom I can't sleep, I just can't stop thinking"
"About what?"
"I'm not normal and I never will be again."
This is her main OCD thought that takes over her mind at night forcing her to stay awake.
Along with other random thoughts, which just fuels her "not normal" thought. "Normal" kids
don't worry about trees falling on their house, teeth falling out, contracting a disease and
dying, or that everyone will turn against her and murder her.
With a heavy sigh I quietly ninja my way out of bed, praying the baby will not wake.
Downstairs our house is lit up, cupboards are all open, and just as suspected the front
door is unlocked and the back door is wide open letting in freezing air. On a good note the
stupid cat has returned.
Back in her room, she is typing away on the laptop. Yep she's on the computer at 2 am,
once again we're gonna have to have the talk about her computer being on past 10 pm.
We will surely have the tantrums that will come tomorrow when we have to remove the
computer (aka her avoidance from anxiety). We've had so many discussions.. "If you can't
turn the computer off and keep it off at night, then we will help you."
"Abigail you can't get to sleep if you are on the computer, turn it off and go to sleep."
"I can't!" "I just can't stop thinking about these thoughts, I'm not normal."
Keys still flying, she starts to tear up. I look down at the screen, Minecraft again. Her
character is just wandering around mindlessly in the game.
"I just want to be able to do things, but I can't"
"Why not?"
"Because I'm always scared and worried."
We've had this talk so many times. She is bored, and wants to have activities like her
friends, but when I suggest a sport or group she always turns them down.
What is there for anxious kids to do? Logically I know that once she faces her fears and
gains confidence she would succeed at anything she wants to do, but getting her to start
is the problem we face. In the mean time she is bored, I'm always game to take her to the
mall, or some other thing to get her out of the house. But it's always on her terms. When
she wants to go, who in the family can come with us, ect. Some of these requests I bend
to, knowing how uncomfortable it is for her to be around family (she does not tolerate her
6 yr old brother). But other times I have to twist her arm (no not literally) to do what I want,
like go to family functions, or grocery shopping. Yes she is selfish, it is my job to figure out
when it is because her anxiety is high or when she is just being defiant.
What a messy room!
And I couldn't be happier! Lately I've seen a big change in Abigail, she seems morecontent and hopeful. Although she complains that she still feels "not normal", her father
and I have seen a lot of behaviors that used to be challenging or non-existent.
She started playing w/ her little sister again, which she says is out of boredom... but hey I'll
take that! Before when her sister would try to play w/ her, she'd slink away like she was
some sort of gross alien she didn't know how to interact with. Abigail would be sitting in
front of our heater register warming up, her sister would come over to sit by her.. and
she'd move away."Mom.. she's looking at me." Her sister (2) actually thought it was funny
to try and touch her, because she knew Abigail didn't want to be touched.
Last week she asked me to help her use the hair straightener. I haven't touched her hair in
over a year. Which ok, I get that doesn't really sound like a big deal. But there have been
so many times in the past year when her hair has gotten so knotted because she just
didn't care to brush it. She'd say what's the point it's only hair, I don't care what it looks
like. So that day that she asked for my help, I was truly shocked! But didn't show it.. nope!
Nonchalantly, "sure give me a sec." After using the straightener herself for a while she got
frustrated. "Can you just do it for me." It had been so long since I touched her hair, I was
shocked to feel how thick and healthy it felt. And yes I had to fight back tears, emotions
are not her thing.
Biggest shocker of all....Today Abigail expressed she's actually looking forward to going
back to school after the break. I asked are you nervous? "No, I just want to get it over
with." Now I'm not getting my hopes up that come Monday morning things will go smooth
sailing, because I've heard her high intentions 40 umpteenth times. But after seeing these
changes, I have more confidence that this time she can follow through and push back her
debilitating anxiety.
Although the medicine I'm sure is helping bring down her anxiety enough to cope, I can
also tell she is just fed up with letting anxiety ruler her life. I think she realizes that giving
into anxiety limits your life, and your left with BOREDOM!
I can not begin to explain how proud I am of my daughter after today. She attended an
entire day of school, bell to bell! I did not have to beg her, ground her, bribe her or drag
her out of her room. She was up at 5 am ready for school! Yes, 5 am... nervous much?!
So what changed in her?
Well, aside from her serotonin imbalance that we worked on improving, I know she worked
hard for this accomplishment. Abigail was sick of the life that anxiety was forcing her to
lead. She knew logically in her head how anxiety worked, but that logic gets kicked to the
curb when she's in fight or flight mode. I've had many conversations with her on how you
can either let anxiety rule your life or you can challenge it.
I would say to her, "Remember how you felt when you thought you couldn't walk into
science class?"
This was the first class we had her try. The class she chose as the easiest to start out
with. Why I'm not sure, probably because it's the last class of the day and it's not math.
"You were so scared, but after you jumped it was no big thing."
But just attending one class a day was stressing her out too, not because the class was
hard to endure, but because she didn't want other kids questioning her as to why she
didn't go the whole day. EVERYDAY she would state that she wanted to go to all of her
classes, like "NORMAL" kids do. Her need for feeling normal was pushing her to the end
goal. So every morning I would wake her up early, but she just could not make the jump,
and then later she would feel terrible and defeated. Yesterday morning was no different. I
woke her, she rolled over in bed, said to give her 5 more minutes. After a few more climbs
of our stairs...
"YOU said to wake you up early, YOU resolved yourself yesterday to go, YOU can do
this." ect, ect, ect, ect, ect, ect, ect, ect, ect (I'm sure you all know of the different pep
talks).
Then I was DONE! Patience, energy, hope, (ugh trying to think of all the other nouns I can
use here), I just felt like I had no more in me. Yes, I knew those feelings would come back
later, but at that point I was just done. I simply took my youngest up on my hip, poked my
head in her door, and said..
"I'm putting your sister down for a nap."
For Abigail this meant I was done arguing and pleading for her to get to school. I wasn't
even going to try for science class in the afternoon. As I was laying her sister down for a
nap, she came in to ask me if she was grounded (she loses computer privileges if she
doesn't at least get to school everyday). One class a day is what we expected of her at
this point, she overcame a lot of anxieties to get to that one class, and we expected her to
keep it up.
Rewind back to those first days....
Abigail's first days back in school consisted of dipping her toe in the water. Everyday the
vice principle would patiently push her a little further. First with walks down the 6th grade
hall, next she had her meet with one of her teachers, then we added her science class.
The day she attended that first class was a feat just to get her out of the car. Abigail had
just found out that morning that they couldn't put her with the same group of kids she was
with before (6th grade students attend different classes within the same group). After I had
tried for several minutes to talk her out of the car with no success, I asked the VP to come
out and give it a go. I knew this would make her upset, but I also knew it would be harder
for her to say no. The VP was brilliant, having a lot of experience with anxious kids. The
VP promised that she would not force Abigail to do anything which was not comfortable
doing. However, she knew she could make it to her office to talk about a solution. During
this car conversation Abigail was mute, when the VP would ask a question she would look
at me, pleading for me to help her out. She wasn't going to budge, but neither were we. I
think what got her feet moving was when the VP (again saying she won't push her to do
anything Abigail thought she couldn't do) asked her to first undo her seat belt, and walk to
the front of the building.
"If you get there and just feel you can't go in, I won't make you."
I don't think she wanted to be treated as a china doll that would break. So she bucked up,
unbuckled her seat belt, hoped out of the car, and walked into school. Once in the office,
we came up with a plan where she could attend her old science class, but eventually
would need to join the other group of kids and classes. Apparently while she had been
gone her old class had been filled to max occupancy.
I'm not sure she was ready for this next part.
"So that science class starts in about 30 minutes" said the VP, continuing "since your're
here and we have our plan in place, I'll have you just hang out in my office and let your
mom get going. Then I'll walk you down to your class."
I couldn't have asked for a better situation! Knowing that going the first time was going to
be the hardest, she had plenty of time to get warmed up to the idea. If we had been home,
she would use the time to get herself worked up because she'd have only me to talk too.
I later learned that they filled up that time before class started with a tour of the school.
She walked Abigail all around the school mainly in silence. The VP later told me that she
knew Abigail didn't like small talk, so she didn't push it. Brilliant!
When I picked her up that afternoon she was in a great mood! And she kept it up, she
attended the class several more times that week, with only a few hiccups. Note to self:
Anxiety does not care about being on time, but being tardy will cause extreme anxiety.
But attending one class was making Abigail feel like that china doll. Like I said at the
beginning of this post, she wanted to attend the whole day like "normal" kids do. She
complained (errrr like it was my fault) that she wanted to wake up early and just go to all
her classes. So I'd wake her up early, and then she would voice her worries.
"I don't know any of them."
"What if I have the kids in my class that I hate, that happened to me before and I just
couldn't stand the entire day with them."
I would always answer...
"What ifs, what ifs, what ifs, what if it's just fine? You won't know till you know!"
However, yesterday I was just done! Her resolve seemed to get stronger and stronger, but
her anxieties just wouldn't back down. I was sick and tired of the yo-yo feelings I was
having. Every afternoon/evening she would have the determination, but once morning
came, it was replaced with worries and self-doubt. I didn't know the answer!
"Am I grounded?"
"I really don't want to talk right now, I need to get your sister to sleep."
"I'm sorry!!! I know, I'm the worst person in the world."
With her exit from the room, I turned my head into my little one's pillow and cried.
I was just exhausted. I have been putting her first for so long, and neglecting my own
feelings and self. I needed a good cry, an extensive nap, and time to myself. I didn't come
out of this with any great epiphanies or new strategies, but I did feel better. I have been on
this roller coaster journey of getting her back in school for over a year now. I just needed
to remind myself we WERE making progress and being discouraged was a very
pessimistic attitude. The very attitude that I DID NOT want her to have!
I did not have any more conversations about school with her, but did help her set the
alarm clock for 7 am. Can you imagine how shocked I was to find her downstairs wide
awake the next morning. Likewise the look on my husbands face....
When he woke to take the puppy out, she was just sitting in the kitchen. Just sitting by the
heater, waiting in the dark.
"Hey Dad."
My husband later told me he thought he was still dreaming, as he NEVER sees her up at
this time, unless she's stayed up all night (which thankfully hasn't happened in a long
time).
Curious he asked, "Why aren't you sleeping it's not even 6 am?"
"I couldn't get back to sleep, so I just decided to stay up."
She apparently was waiting for him or I to wake up and turn the internet back on (we set
our router to have time limits for obvious reasons). I turned it back on for her and let her
chill while the rest of us got ready.
Her older brother I'm sure felt like he was in the Twilight Zone. He made it to the car first
and while waiting for his sister who was still inside primping her hair. He asked, "is she
seriously going the whole day?" I told him NOT to make it a big deal when she got in the
car. And he didn't, he knows how hard this has been for her. I just hope he doesn't pick
that scab later like older brothers sometimes do! He gets jealous of all the attention and
exceptions we make for her, and rightly so. He's a great kid who always does what's
expected of him, it just doesn't seem fair to him.
As I drove them to school that morning, the only worry she voiced was about lunch time.
"Don't forget to pick me up for lunch!"
Like I would forget, I've heard many times all her worries she has about lunch. Eating in
front of others, where to sit, how loud the cafeteria is, food getting caught in her braces,
etc.. All worries she will have to deal with, but not today! Today was her day to jump with
confidence, and try out her wings.
Just mom
It's hard being the only one Abigail will talk to when she needs something. The whole
family knows the "come here mom" wave. She'll do this when she wants to get me in
another room so she can talk and others can't hear. I get frustrated though when she does
this. Feels like I'm a puppy being summoned.
"What Abigail?"
Then she'll give the big eyes implying she will not speak in front of everyone else, and the
hand wave gets more impatient. And yes, there have been times I will not give in. Those
times she'll huff and walk away pissed. I can usually tell though if it's something important,
but that intuition is sometimes wrong.
Alone. "Yes, what is it?"
"I'm starving can you make me some soup."
Really! That is what she couldn't say in front of her dad and siblings! Sigh.
She wasn't always this uncomfortable speaking around family. Abigail used to love
staying up late on weekends watching movies with her dad and brother.
My husband never got sick of watching this over and over...
"Oh no kissing part, look away! AHHH!"
And she used to love dad's favorite...
Her father also misses his shopping buddy. I, on the other hand try to avoid the mall like
the plague but those two loved to shop! And she had him wrapped around her little finger.
She knew that if she spent a little time letting him pick out polos and jeans, showing
enthusiasm with his choices, she'd get her turn... Claire's, Justice, and Jamba Juice. The fashion sense those two have! And patience! He'd stand at the front of Claire's as
she'd bring him jewelry, lip gloss and other unknown trinkets. She'd ask his opinion on everything,
because dad apparently knew what was considered cool for a 10 yr old girl.
When her school refusal started last year, she shut us both out. She wouldn't express at
all why she was unhappy, other than "I HATE MY LIFE!"
After spending a lot of time together (therapy appointments, horseback ridding lessons,
mall trips, and the many times discussing school worries) she's finally comfortable sharing
with me again, but not her father. If Abigail and I are having a talk in her room about the
upcoming day and he pokes his head in to say good night, she stops talking or says, "GO
AWAY!"
It breaks his heart. Not only does he miss his little girl, but also feels so helpless. He hears
and see's everyday how much stress I am under trying to keep this family afloat. But
when it comes to Abigail, right now for the most part I'm on my own. I am the only one she
feels comfortable opening up to. I'll take that though considering at her low point she
closed up completely. I'm grateful that she trusts me enough to share her feelings again. And
I've learned instead dismissing those feelings, to help her work through them.
