home-again, home-again, jiggety-jig!

Christmas. 

 >sigh<

You know?  There were some really sweet things about Christmas this year. First and foremost, it was probably the most peaceful and happy family gathering we [my siblings, parents, and I] have had to date.  It was nice, fun, wonderful to spend time together. Despite the increased stress levels there was no drama or problems to diffuse.  It was really amazing – I think we may be – [[gulp]] – GROWING UP. . . .   I’ve heard that can happen sometimes, and I’m pleasantly surprised.

Emma was relatively good, all things considered.  She was really just barely on the mend from her horrible bout with the croup.  Meanwhile, I came down with the flu.  I mean, the real deal, influenza.  You know what’s pretty silly?  It turned into the croup for me too.  Second time as an adult to have that happen.  I must have some sort of perpetually inflamed throat/bronchial area or something, and it just gets set off. Ugh.  I was pretty much uber-sick through the entire visit, but I’m on the mend now. 

And back to Emma, the reason I write here.  She seemed to oscillate between cute-hyper-bundle of joy and a vicious wild animal caught in a snare.  Overall, I was impressed.  She had a few horrible meltdowns, but it could have been so much worse.

What really sticks in my mind is sitting in the back of the room, watching while all the kids opened their gifts.  Her cousins, and brother, and other adults watching and helping, were all so INVOLVED and excited.  Emma was very happy, and was enjoying a gift she received, but she was so ISOLATED.  She really didn’t notice or care what the other kids were doing, or the adults either.  She was in her own little world, in which others enter and leave upon her discretion.  Everyone ran downstairs to see the cousin’s big presents in the garage, she?  Doesn’t listen.  Care.  Notice. Anything.  They come back?  Whatever.  She’s looking at her baby doll, pushing it around in a stroller, telling everyone, “Baby! Baby! Baby!”.

She was sweet and happy, and I received great pleasure watching the interactions she did have with her family members [usually the adults].  But I also caught my first full-monte of her very unique world, and it’s limited vision and involvement with others, especially other children.  I found it kind of sad and melancholic.  But not overwhelmingly.  I guess I’ve had too many other realizations about her lately, and this was just another drop in the bucket.  It’s something that we can work on as she gets older, within her own comfort levels.  I think.  Whatever makes her happiest, I guess.

By the end of Saturday she was pretty well cooked.  I think my mother and step-dad were too.  I decided against throwing her in the car and leaving abruptly at 7pm, and took her to bed for a good storytelling instead.  One half-book and two sippy cups later she was asleep, and I was dreaming of sleeping in my own bed.

And guess what, my dream came true!  I’m back at home, coughing and hacking into my own sweet-sweet pillow.  🙂

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…no rest for the wicked

I kind of feel like I got hit by a truck and I’ve been laying by the side of the road for a few weeks.

While I was in the ditch, a few good events passed me by…  Finals for semester three came and went, leaving me with a 4.0 GPA.  My hard work and dedication will hopefully pay off, literally, when I appy for some scholarships next semester.

We were able to get in with the developmental specialists at Children’s Hospital on Jan. 5th.  With the short notice and our schedule demands, this was very unexpected.  We meet with the metabolic specialist on the 4th, and will hopefully get some more definite results on what is going on with Emma’s mitochondria/etc.  Having the developmental appointment the day after is great; if we have new information from the metabolic clinic, we can put it to good use.

Also, it appears that even though the pricipal so rudely told me that they “absolutely will NOT” pay for out of district placement for Emma in a preschool, they WILL.  Ha ha ha.  It’s called STATE LAW, and I’m so glad that we aren’t going to have to hire an attorney.  Emma starts preschool the week of January 10th… Let’s keep our fingers crossed for a happy transition!

On a not-so great note, last Friday Emma came down with a horrible flu.  She has spent the last 4 days/nights feverish, no food, little drink.  Sunday we ended up taking her to the ER due to a very sudden and aggressive cough with labored breathing.  The verdict was croup, to our dismay.  She hasn’t been sleeping hardly at all, and last night she had a HORRIBLE night-terror attack.  It took us hours to get her to snap out of it.

You know what’s weird?  It doesn’t matter what is going on – Emma is never lethargic.  In fact, she is nothing but uber-energetic all the time.  Here she is, not having eaten in four days, dehydrated, sick as a dog, and literally bouncing off the walls of the doctor’s office today.  Do you get it?  I DONT.  Now, please keep in mind friends, that I didn’t say she was happy all the time.  That hyperactivity can definitely be put to some very frustrating and ear-splitting use, my sweet little girl…   she’s such a handfull.  Her latest trick this weekend is telling me, “STOP IT, MOMMA!!!”  >>sigh<<

Have any of you readers out there dealt with this non-stop hyperactivity levels?  It’s not that she can’t sit on my lap and read a book with me, she can.  Sometimes.  If she really really wants to.  But I mean, she NEVER stops…   ??????????????????????

So – needless to say – momma hasn’t been sleeping at all either.  It’s finally caught up with me, as I am starting to have a sore throat and feel achy too.  Ugh!  Finals week running straight into sick toddler is no fun at all.  Now I’m worried that our plans for Christmas with my family might be cancelled…  keep a few fingers crossed for us.  🙂

A Tight Grasp

What is it?  What is wrong with me?  I stare at the screen and start counting out the points from individual assignments, tallying in my head…  “What?!  Only 96 out of 100?  That can’t be right!”  I stare at my grade in my child development class.  99.1%.  I could have gotten a better grade, you know, “If Only”.

You can roll your eyes to high heaven – but it’s true – I have an issue.  I call it “over-achievers-anonymous”.  School has become a safe haven of mental sanity amidst the craziness of autism, teenagers, and new-marriage.

I feel that I cannot control my house, the weather, cleanliness of anything in my possession [including clothes – heaven forbid I stay clean for over 30 minutes], my weight, my diet, my marriage, my hair, my son’s friends, my son, his schooling, my schedule, my dogs, my neighbors, other drivers, the local wildlife, my extended family, my memory, my age, my health, our finances, and CERTAINLY not anything regarding Emma and her behavior or needs [need I go on further?]

These are just my feelings, some are ‘true’ and some are not.  Regardless.  Thank GOD for school!

I control my schedule, and what classes I take.  I show up, and there are general expectations that are generally met.  I do my work.  I put in the energy and brainpower, I give it everything that I have left to give it, and you know what folks?  I GET BACK OUT OF IT EXACTLY WHAT I DESERVE.  Isn’t that a beautiful thing?  How many areas in life do you really get that, really really?  I get this huge pat on the back.  I have TANGIBLE evidence of my efforts, striving to do the best that I possibly can.  I get an A, or a B, or a C, or a D, or an F.  [Heaven forbid.]

I completely control the outcome of my schooling.  Just me, myself and I.  Of course I have my husband to thank for homework time and making dinners for us, and much more.  He’s very supportive.  But when it comes down to IT – It’s all me.

Folks, can you see what a beautiful thing this is?  This SCHOOL thing?  It’s a force of sanity for me in what feels like a rocket-whirling-dashing world of unknown.

I haven’t always had the need for something so concrete.  I don’t think I used to be a control-freak in the past, pre-Emma that is… 

I guess I’m just thankful and lucky that I have this thing to cling to during these times that I find so frustrating.  Perhaps by the time I graduate I’ll have these issues worked out or I will no longer have the need. [[Hey, we can always hope, right?]]

Anyway, on the update level:  I took Friday off from everything just to relax at home with Emma.  We didn’t even do arts and crafts or etc, I really felt that we needed to have the most un-stimulating day ever.  It was really good, and she even napped for 2 hours.  The weekend was all right, better than the previous week.  Therapy on Monday wasn’t very good, and we are definitely still having meltdown problems.  BUT – the horrendous crazy cycle of last week appears to have ended.  Language levels are up, bad behavior levels are up as well.  What can I say?

Funny little story that just KILLS me:

Saturday morning I was hanging around in bed, doing my best to catch a few more zzzzz’s in between Emma’s “Moooo–mmmmy!”  yells from her bed.  Finally I call out to her, “I’ll be there in just a minute, Emma”.

I hear her in her room.  She says, “No.  Get up now.  No, mommy!  BAD MOMMY!”

I just couldn’t believe it!  It was so funny, and abnormally spontaneous.  I still laugh when I think about it, “BAD MOMMY!”  Ha ha ha!!!  Hugs to all of you, and thanks for reading.  You keep me sane, too!

Moving right along…

I gave Emma the melatonin last night, and it still didn’t seem to do anything.  She woke up once where I had to help her get back to sleep, and another two times where I just let her fuss a while to see if she’d just go back to sleep on her own.  She did [go back to sleep].

I had to get up early today; 5am just popped right out of a dream, like moon in the middle of the night.  That might not make sense, but, it’s what it felt like.  I walked into the bathroom hoping to douse my brain cells into some form of alertness.  That’s when I heard the ‘peep’ from Emma.  “Mommy!” <all grins and standing up> I couldn’t believe it!  What in the WORLD was she doing awake?

I waited a minute to see if more green pea-soup would spew out of her mouth or if her head would start spinning around.  No, no no, it appeared that she was feeling rather happy.  I’ve found that when she’s in a good mood, I’m emotionally holding my breath, and this morning was no different.  Regardless. I scooped her up and gave her all the hugs and kisses I possibly could, making up for lost loving-time during the fits over the last few days. It might have been my imagination, but I felt like she was soaking it up like she had missed wanting to be loving with me.  I put her in bed with daddy and her baby [a stuffed rudolph that plays the song loudly when you press its ear] and covered her up to cuddle in bed. I was even able to get dressed and ready for work while she lied in bed talking softly to herself with rudolph. 

She was fine until daddy’s alarm went off.  That sound is particularly alarming [no pun intended] for her and it scared her to death.  BUT, the recovery was swift and soon she was back to smiles.  She even let me put pants and a clean shirt on her today… 

I’m SOOOOOO thankful, I really needed a break. Even if I pick her up from daycare and the screaming begins, I have refilled my reservoir just a little bit.

PS: In my last post, for some unknown reason I said that Emma was 4…  Ha ha!  She’s 2.  I actually woke up in the middle of the night thinking, “OMG, I wrote in a post that Emma was 4, didn’t I!!!!”   ‘Have no clue where that came from.

The Saddest Violin in the Orchestra

I have to know, for those that have been dealing with a special needs child longer than me, does the grief ever go away? Or does it follow in some form or another as life’s milestones continue to pass by differently than you expected [before diagnosis]?

This week has been excruciating. I have no idea why, but Emma’s behavior has suddenly spiraled down into the pits of despair.  The last four days have been filled with anger and tears beyond belief.  She’s having these horrible meltdowns that turn into absolute insanity as she hits herself, slaps her face, pulls her hair, and bangs her head while screaming like she’s on fire.  They last for a looooong time, and happen multiple times a day.  That makes the horrible angry screaming fits seem like good behavior, and the times like now [happily watching sesame street as she plays with a straw] seem positively ANGELIC.

The last 20 minutes of the ride home today were filled with that.  She wanted the Elmo movie on.  I HAD it on.  She melted down, and under the screams I just had to listen to the sound of her slapping herself in the face and banging her head back on the car seat.  ???  I tell you what, it’s torture.  The last month has been mother abuse, but she’s only 2, and I wouldn’t press charges anyway.  But damn. I’m reaching a point where I feel like I’m stuck living in a nightmare.

The doctor on Monday said she probably has vocal cord damage [scar tissue?  Polyps or something] from screaming and yelling/crying so much, so loud, for so long.  Talk about breaking my heart. While we were there, we heard other kids throwing horrible fits in the other examination rooms; they sounded just like Emma.  Except, they were 8 or 9 or 10 years old.  It was overly sobering.  I try to be positive and think that things will improve for us – maybe these things are all just a phase.  But to be completely honest, the future is so vastly unknown that it’s absolutely terrifying.

The doctor also told us to try melatonin before bedtime.  I guess that it has extraordinarily positive effects on children with an ASD.  We bought some on our way home from Denver.  I was SOOOO excited to try it!  Last night was her first night, and it didn’t work.  She still woke up twice. I know that may not seem like a big deal – but I was disappointed anyway. I’m very ready to begin sleeping through the night.

Today Emma even threw her fits during therapy, which has never happened before.  She loves J & J so much that sessions are usually great, despite how bad of a day she’s having.

I’m also broke, heading into finals week, and had my last painting class today – none of which help with my feelings of discouragement.

Momentary Delay

Ugh.

I’m not feeling eloquent, folks.

This week:

-I destroyed next semester’s school schedule

-Found out no school has room for my daughter, so I don’t know if she’ll be getting any therapy after February [without a f.ing lawsuit, at least]

-Had social services calling me to see if a young man from my son’s school could come live with us for the rest of the school semester

-Found out Emma has severe eczema, and we’re now suddenly sans-frangrance

-Burned my chest and right arm [minor – thank goodness] with hot caramel while inverting caramel rolls

-Dealt with a DD two year old on steroid cream, having an allergic reaction to steroid cream, all day

-Just got done listening to a close relative tell me that Emma is doing just great, and that young people just expect too much from children these days [lots of inferrence here as well]

-And more.

I just can’t seem to sit down and really write anything worthwhile to read about all of this, I don’t know why.  I’ve tried probably four times. >>sigh<<

I’m sure I’ll be back,

Daleth