What can I say?

I’ve been ignoring this blog, but it hasn’t felt good. There are so many times that I want to share the latest challenge or victory, and I feel like I just don’t have the time to give the posting what it deserves. So I don’t do anything.

Isn’t that just a gauzy-flakout?

I know, you all can see right through it…

I need to write anyway, because it helps me to process and it also helps others to understand. Instead of spending so much time surfing Facebook about the latest atrocity or victory, maybe I could dial it in a little more close to home.

Thanks for being here, everyone. I graduate with my BA in three weeks; I hope that part of my pre-graduate school life can include sharing in here and reading more of my favorites listed in my blogroll as well.

love*love*love

LoveABLE News, and really loveable kids…

THERE. I did it. I edited, created, worked over and otherwise single-handedly brought the A-Teams newsletter to life. There are some great women in the group that came up with a number of the to-be-regular columns. I really enjoy how each person’s character comes through in the writing, it really was a joy to work on. It was also challenging; I have never worked with Adobe InDesign, and also felt hindered by the CS edition limitations. Regardless, it’s a beautiful thing, and it moves me closer to my personal goals of transformation.

The newsletter is at: www.dalethmccoy.com/loveable_news .  I hope you will take the time to read through the articles, and I also hope you will ignore my ridiculous error in my “letter from the editor”.  Isn’t it amazing what missing one little word can do?

And on to my extremely loveable kids. R took his “alive at 25″ class, and now we just need to get him in to take the test for his driver’s permit. I find that tremendously exciting. Terrifying, yes, he has some real challenges. But how could I possibly let his enthusiasm go unappreciated? I think that we will have fun with this.  He wants to join the Cross Country running team this fall. I’m impressed, it’s the first time he’s shown interest in any school sport. I’m hoping that he really explores and benefits from it.

He’s 5’10”, a full 2 inches taller than me. Taller than his biological father, and it makes me wonder just how tall he is going to get! His step-dad’s genes must be rubbing off on him a little bit. 

And Emma, little [huge-47lbs] Emma.  She’s really taken off this summer. Her teachers and therapists will be so impressed when she starts working with them again. Her language ability has jumped tremendously. She is a little more interactive verbally than she was in the spring. Her mega-meltdowns have decreased a bit, and she is becoming a little better able to express what she wants/needs/etc. before escalating to tantrum. How wonderful!

But as natural as the human condition is, you can’t expect it all to be good. The potty training is getting downright depressing. I thought that it was going well, but it ends up that there are times where she just doesn’t care. She’ll pee on me, the couch, floor, bed, bean-bag, whatever. She just doesn’t notice or care. She has also been developing a strange dislike for using the toilet (big or small) and will hold it in. I have to force/bribe her to go to the bathroom (and that’s on a good day). Other days, it’s just one accident after another.  Needless to say, we are using pull-ups more regularly now than 3 months ago. Maybe when she goes back to school she’ll get into a better mindset about it.

One thing that drives me crazy about myself, is this “ROAMING STATUS” that I seem to have set up for myself. It’s a never-ending mental status search to figure out exactly how high-low functioning she really is. Emma is such a little anomaly. And I know that this quest is meaningless, but I just can’t seem to stop.  She does many things that “Low” (termed by their parents) functioning children do not do. And yet, there are things that “High” (termed by their parents) functioning children do that she has no interest in.

It’s just me. I just want to KNOW. I want to be able to gauge her capacity, like I am my thyroid. It’s at 3.9, therefore, ingest 75 mcg. every morning.  You know what to expect. I hate getting my hopes up about how normal/typical she might be becoming, only to have her turn around and be a complete-total-pissing-weirdo. (said with love, folks) And yet, I will not sell her short – she might have amazing capabilities that we just haven’t tapped into yet. I WANT to give her the chance to be typical in every way she can/wants to be.

All I can do is love her, and try to tune out my Roaming Status as much as possible. It’s expensive, and wastes brain-power. 😉

Anyway, back to the mundane. I’m cleaning my house, getting ready for my in-laws to come visit with us and then take care of the kids while DH and I take our belated honeymoon in Monterey, California. OH, yes, and it’s also for my super-amazing art seminar I am going to, “Weekend With the Masters”. School starts in 5 days. And I would love to just sit here and write……….

 

Can I Catch My Breath?

[[pre-reading-note:  For some reason, I’ve used about 100 exclamation points in this post.  I’m not sure why I’m so excited about everything, but it’s really showing through my punctuation.  I apologize in advance if by the time you are done reading this post, you feel like you’ve been yelled at. ❤ ]]

Well, well, well…  It’s been over three weeks since my last post.  Bad-Daleth!

We’ve had a really amazing, busy, and stressful month.  School has been moving forward, faster than ever.  Homework, research projects, and papers are piling up as I speak!  🙂  I love every class.  I’ve been fighting to get R. his passport before his big class trip, we are anxiously waiting for the final verdict.  DH has been busy as ever, making his own mining equipment, testing his skills at pottery and tile-making, and of course, WORKING.  Thanks for paying the bills and feeding us, hunny!  And Emma?

Dear Emma.  She’s been making some incredible progress.  There are a few new things that she is doing that bring me such great joy.  This last month she has started singing more.  Now, she doesn’t really know many songs, but she kind of hums around, or repeats a word while she plays [in tune], or hums along a few notes to Old McDonald/etc.  It’s just so sweet and joyful, and such a beautiful ‘typical’ thing.  It’s a sign of her being happy, at least for a small period.  I really like it when she is happy. 🙂  She is also using her imagination more… today, she put a new jeanskirt on her head, and ran up to me smiling saying, “CROWN!  crown! Crown!”  I say, “Yes, princess Emma has a very pretty crown!”  🙂  The other day my DH put an old box on his head and said, “Hi Emma.”  Emma pointed at him and shouted, “ROBOT! ROBOT! ROBOT!”  I was delighted.  New positives also include easy transitions into her car seat, and being able to get pants on her most days of the week. 

Other more strange qualities and behaviors are becoming more apparent, some are disturbing.  But for the last few weeks I’ve been getting some sort of reprieve from the incessant blows.  I am resolved to not take a single moment for granted!  My mom has been here for the past few days.  Emma’s daycare/school has been closed for spring break and we are lucky enough for Mom to come spend time with Emma so that I could attend school classes. I’m jealous of Emma, I wish I could have spent the last four days with her.

I’ve had three other really big and amazing things happen this month.  FIRST: I gave my first AVA presentation!  AVA stands for A Vision of Autism, and it’s my little operation I have going on.  Mainly I’m advocating for autism education, and sharing to the community what it’s like to parent a special needs child.  Anyway, I gave the presentation to a class on the Exceptional Learner at our local community college.  It was a great success!  I got great feedback, and felt that I had really passed on some parts of my experience to others in a beneficial way.  I can’t believe I actually did it!  I’m really, really looking forward to giving the presentation throughout the region.  I will be doing my second performance at the end of April for Adams State College, where I am going to school. 

SECOND, I attended my first meeting about the Walk About Work Project.  I’m so excited and grateful to be a part of such an exciting venture!  It’s been quite a while in the making, but some parents and community members have gotten together and started a beautiful, mobile concession stand.  It will be run by special needs adults, giving them valuable work experience, and giving our community a great experience in appreciating these wonderful people!  It’s only a matter of weeks away from being complete and operating.  It’s through his project and it’s home-base that I am able to put together the Toy Bank.  I’ll be housing it in their location, and sharing some other options with them as well. 

THIRD: We went on our first family vacation!  We spent a week in sunny, beautiful Arizona.  It was incredible!  What a trip, I tell ya’.  Lots of interesting times with Em, but overall, really good.

FOURTH: Last but not least, I’ve launched yet another project.  Yeah, I just don’t have enough to do.  🙂  Anyway, here it is folks!  www.dalethmccoy.com  I’m doing custom oil portraiture.  My sister has put together a wonderful website, I’m such a lucky girl!

Oh yeah – I also had a birthday.  😀

[[[sigh]]]  Well, dear readers, I can’t leave you on such a mundane note.  So here’s some deeper thought for the day…  I’ve noticed that I hesitate greatly when it comes to sharing Emma’s progress and positive notes.  I want to share and roll around in it – yet – I am scared.  I fear false hope and well-meant ignorance from others.  I worry that other people will read and think that maybe Emma will turn out normal.  Maybe she’s cured.  Maybe Daleth doesn’t really struggle anymore, and her life as a mother is as typical as could be.  I worry that in sharing the boosts of progress I’ll be forced to having to convince people, yet again, that she really does have a disorder. 

I’ve been thinking about this reaction of mine, trying to analyze it and understand.  I think one of the more difficult and frustrating parts of the initial diagnosis period was in dealing with other people’s disbelief of her disability.  It was like a nightmare, having to negotiate conversations nicely and tactfully, when I wanted to scream and curse and cut someone up.  How dare someone doubt the reality of our pain and trauma we were experiencing?   —it was very challenging.  So, I guess I’m just protecting myself.  Interesting, eh?  🙂 

[note: I posted positive changes today.  I figure that’s the best way to move through this little thing.]

…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!