JuneBug

A jewel has been born!  7 pounds, 6 ounces of pure sugar – this tiny little bundle was handed down to us from the Lord.  Born 10 days late after 13 hours of intense labor, we were thrilled to not just be husband and wife, but daddy and mommy – a true family.

Newborn

She was such a funny little thing.  She would not fall asleep in my arms.  The only way to get her to go to sleep was to let her scream for 20 minutes.  Mid wail she would fall dead sound asleep.  With her fingers in her mouth and her blankie in her hand.

JuneBug had many ear infections.  She had an incredibly high pain tolerance and would ignore the pain, but we knew she had an ear infection because she would be up playing all night in her crib but be cranky the next morning from lack of sleep.

She sat up all by herself at 5 months and could use a pincer grasp at 5 months old.  She walked at 13 months old.  She was never a very adventurous little girl, she didn’t like the feel of the grass under her feet, didn’t like to climb, and usually played right in one spot (sometimes for hours, even as a toddler).

She gagged on everything, especially medications.  She had food texture aversions and would not eat mashed potatoes, rice or any type of leafy veggie.  Spaghetti had to be cut up into little tiny pieces or she would choke.

JuneBug had speech delays which included articulation, expressive and receptive language.  Speech therapy started by the time she was 2 and by the time she was three she said her first sentence: “moon, tree!” which in her mind meant – “look, the moon is behind the trees”.

JuneBug seemed to have severe judgement issues from a very young age – like when at 2 years old she fed her baby sister broken glass and stood there joyfully watching as the shrieking baby was chewing on the glass.

JuneBug had two ear tube surgeries – and her adenoids removed.  She had allergy testing which came back inconclusive.  She always had dark circles under her eyes.

Occupational therapists worked with her to minimize sensory aversions from the time she was 2 to the time she was 3 and aged out of their program.

JuneBug was a bit quirky as a preschooler.  She absolutely could not put Duplo blocks or puzzles away unless each and every piece was separated. It was one of those odd, unique things she did.  If she was asked to hand someone the red crayon while she was putting the crayons away she HAD to put each crayon away – even the ones that had fallen on the floor – before handing over that red crayon.  It was almost like a compulsion.  There were several times I spanked her thinking this was a defiance issue – that led to loss of eye contact, confusion and anger.  I didn’t know why at that time.

She got lost in her own little world sometimes.  If she was watching TV, she tuned out the world.  I had to get eye contact, give her a clear 10 minute then 5 minute warning before the TV was turned off so she wouldn’t panic hysterically.  Even then she would have a meltdown if she was intending to watch the credits or listen to the closing music and I turned it off 20 seconds too soon.  Same with finishing up any activity – if she was not warned 10 minutes, then 5 minutes prior, she would rant and scream and occasionally seek out people to hit.

She hated to get wet – the feeling of the wet clothes on her body would make her so uncomfortable that she would be angry and totally melt down unless allowed to change.  But it wasn’t as easy as just changing into dry clothing.  Every single bit of moisture had to be completely dried off her body in order to put on dry clothing.  This has always made bathing incredibly challenging for Julianna.

She had unusual skin sensitivities.  She craved deep hugs and would lean on and literally hang on mom or dad, but would totally freak out if someone touched her on accident.  When forced to wear shoes or socks of any type she would meltdown.  Tags in her clothing and any type of restrictive or tight clothing set her off.  Buttons.  Well, buttons are her nemesis.  She refused to look, wear, or even consider trying on anything with buttons because of their feel.  She would have a total cow if her hands got sticky.  Sometimes we would not even know why she was crying – we just figured it out through trial and error that she had a sticky spot on her hands.

She had an odd body position she called her ‘thinking position’ – basically her way of shutting the world out and de-stressing.  When not using the thinking position, she would chew on her fingers and bite her lips when stressed.

Like clockwork, it would take JuneBug about 3 minutes into breakfast to start yelling at her siblings to “quit smacking”.  She was upset because the chewing noises they made were very loud to her.  She covered her ears when she heard anything loud.  Small sounds like air conditioners distracted her. She also had a very highly developed sense of smell – and would always talk about the stinky smells wherever we were.

JuneBug was ALWAYS a helpful little girl.  She had a strong desire to please people.  She did not understand why this backfired on her sometimes.  Like when she did things for people when they wanted to do it themselves.  Or when she thought she was being helpful but should have asked first before touching whatever it was because it got ruined.

When she turned six she started having massive meltdowns every time she went into a large building such as a grocery store, mall or home depot.  While she truly enjoyed being in the AWANA program, she could not handle the noise and chaos of ‘game time’ where all the children were together in the sanctuary running and playing.  She preferred to stay behind in the classroom and be the teachers snack helper during game time.

One night at AWANA JuneBug had been denied access to snack helper duty.  She had gotten in the game circle in the sanctuary and a few minutes into the game, she crouched down into a ball and started shrieking like someone was killing her.  The leaders knew no one had touched her.  She was having the first of what I now believe were massive panic attacks.  She was hysterical and unable to focus on anything or anyone.  The kids were all really freaked out by her behavior.  It was one night after the AWANA incident when I finally gave up, threw in the towel and said “I don’t care what anyone thinks – this child needs help and it is NOT all in my active imagination!”

JuneBug was homeschooled from Kindergarten through Fourth Grade.  She learned to read at 4 ½ years old.  She understood pretty much all of what she read.  But sometimes when I talked to her, she just didn’t quite ‘get’ what I was saying.  Even when I said “Go get the shoe and put it on the shelf” and had her repeat it back to me she would sometimes not do what I wanted her to do.  It was a long road of misunderstandings and my believing she was truly being defiant and disobedient.  Oh how I wish I knew then what I know now!  I would try to tell people how she had a disordered language issue, but they didn’t understand.  Even my own husband didn’t believe me.  We’d be driving to WalMart and she would ask me “Where are we going?”  I would respond “We’re going to WalMart.”  She’s say “No, where are we going?” And I’d say “We’re going to go straight then turn left.  Then we will pull into the WalMart parking lot then go into the store.” She’d say “I know that, but where are we going?”  After 5 or 6 of those kind of questions in a row I would get so frustrated that I would tell her to look out her window and be silent.  It drove me nuts – I finally made a rule that she was not allowed to talk to me in the car.

I was so concerned about the inflexibility, explosive temper, panic episodes, unusual language use and extreme sensory issues that I took her to a licensed mental health councilor and said “I just don’t know what to do with her anymore! Tell me what to do!”  She set me up with a strict schedule and some helpful hints on how to transition without a fight and sent us to see a psychologist for testing because she did hear the unusual way Julianna spoke.  During testing, she was seen to have what the doctor explained was a possible seizure.

Trips to a neurologist and subsequent MRI and EEG testing revealed that she did have partial complex seizure disorder (AKA Epilepsy – but the doc didn’t call it that because he didn’t want me to freak out).  She started on anti-epiepileptic medications.

When JuneBug was seven, she was sitting on the bottom bunk bed.  Her 2 year old sister slipped between the mattress and the ladder.  RoseBud’s neck was stuck, she was being suffocated and screaming hysterically.  JuneBug just sat there and continued to read her book ignoring the screams and RoseBud’s arms flailing out to hit her.  It did not occur to her to help get RoseBud unstuck, go get help or even to see what she was screaming about.   She was, as typical, in her own little world.

JuneBug was diagnosed with auditory processing disorder and specific learning disabilities in math and reading when she was 7.  Numerous interventions, teaching strategies, strict schedules and modifications were put into place to help JuneBug succeed.  They helped, but the diagnoses didn’t seem to encompass ALL of her issues.

During her fourth grade year the educational material was becoming too complex for her to comprehend.  The vocabulary was getting much harder and when the words got past 2 syllables she could not pronounce them or remember them, so she was beginning to skip over words and completely lose the context of the passage.  She started tutoring to help with the learning issues, and at the same time started intensive speech therapy to help with her auditory processing disorder.

By the end of her fourth grade year, JuneBug was not progressing at all in her studies.  We had no more money to pay for the tutoring or therapist, so it was either let her education degrade to the point where she was stuck in fourth grade forever or put her in school.  She was enrolled at the local public school, but in third grade.  In her IEP, she was afforded special accommodations in her school classroom routine (front row seating, extra time to get her work done) and special pull out classes to help with her studies.  She was also enrolled in the speech program.  JuneBug found it incredibly hard to make friends due to her language issues, and she had several meltdowns at school because she could not understand what teachers and peers had said to her.

It was also at this time when Junebug completely stopped going to church, stores, the mall, parks and anywhere where she would feel uncomfortable and most likely produce feelings of panic and uncertainty.  If forced to go she would have a hard time being civil because of all the stimuli that was bombarding her system.  She missed out on many fun outings because of this.

JuneBug was enrolled in a social skills class.  She met a few friends who were amazingly similar to her, although they did not have the same language delay.  She participated in this group for about a year and still keeps in contact with them.

By the middle of her fifth grade year, JuneBug was despondent when even thinking about going to school.  She was working extremely hard to complete all her lessons on time and with accuracy and she was starting to get good grades.  But not having friends and feeling like she was ‘different’ were taking a toll on her self esteem.  She constantly said “Everyone thinks there is something wrong with me” when she got upset.  She loved her teachers, but had no real friends.  She lived in her own little shell, and when she tried to come out of it, her interactions were not received well by peers.

It was at this time when I decided that with all of my struggles with her, fighting with her over taking her seizure medication was just not worth it.  I weaned her off the medication and she hasn’t had any recurrent seizures since.

I enrolled JuneBug in a small private Christian school.  Because of its incredibly small class sizes the teachers plan for each child as an individual.  JuneBug is working on curriculum based on her skill level.  Her teachers constantly encourage her and work with her on school goals as well as personal goals (keeping a hygiene routine, a morning routine, and encouraging her to express herself and make friends – even calling her when she will not get out of bed in the morning!).  This has been an incredible help – she has become more comfortable with herself and her surroundings.  She is not as anxious at school, and has started making friends and is starting to make more age appropriate choices.

JuneBug was officially diagnosed as High Functioning at 13 years old.  Before this, she was diagnosed with all sorts of things that ‘sort of’ fit, but ‘sort of’ didn’t.  JuneBug is on medications to help her cope with the anxieties and overstimulation in her daily life.  We work closely with a specialist to make sure the meds are doing what they are supposed to.

The key to Julianna’s success so far has been my planning everything, getting her to follow that plan, and rarely taking her outside of her comfort zone.  She rarely goes to new places, she rarely goes to familiar places like the mall, grocery store, church or anywhere that has a large open spaces.  She still has sensory issues – she needs to be warned before someone touches her.  She has learned to ask permission before hugging people.  She still hates taking medication and getting wet but she is progressing.

She still tries to be helpful, but misunderstands things just enough that she gets it wrong.  Like when her sister said “don’t touch the computer” as she got up to get a drink.  When the timer went off, instead of not touching (thus respecting her sister), she said “oh, the timer went off, I’m going to be helpful and turn off the computer because my sister isn’t in here”.  She truly had no idea why her sis was upset.  This seems like such a little thing, but over time it seems to those on the receiving end of JuneBug’s helpfulness as if she is being selfish or disrespectful.  She still has a hard time putting herself into other peoples frame of mind.

This is JuneBug’s life so far.  Bare bones, diamond in the rough, she is a true jewel and I love her – quirks and all!

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