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!  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.]


good days, and not-so-good-days

Today wasn’t an especially good day with Miss Em.  I left this morning before she woke up and headed over to my sister’s office.  It was empty, quiet, and perfect to get my Autism Presentation finished.  I have my first actual presentation scheduled this week [holy cow!]  Anyway, apparently she was mostly normal for DH and R while I was gone.  Then, I got home, and the damn dam broke.

She spent nearly the entire waking day screaming, clinging, desiring ridiculous things.  She wanted her blanky, there, now.  No, now she doesn’t want cereal, and she’s going to SCREAM about it.  What the heck are those dogs doing near her?  [scream, hit, scream, hit].  Pull on mommy’s hair, pants, shirt.  Oh, lets bite mommy’s shoulder now.  She wants the park, she wants Dora, she wants Spongebob, she needs a new diaper NOW [we just changed it 2 seconds, literally, prior.]  Ugh.  She wants the dishwasher soap.  She wants the OTHER lotion.  [scream, cry, scream, cry.]  Cry. Cry. Cry. Scream. Throw. Cry.

Did you ever know that a child could be so incredibly unhappy?

She needs me to hold her, ALLL the time [she weighs 45 lbs].  She wants to wear the bra that I’M wearing.  Why the HELL is that dog chewing on it’s bone across the room???? [SCREAM, SCREAM, “NOOOOOOOOOOOO ZEUS!!!!”  For godsake.  I was NOT about to get up and punish the poor dog this time.  Scream, scream, she wants soda.  juice.  chocolate milk.  a lollypop.  cereal.  chips.  chocolate.  NO, she doesn’t want ANY OF THAT.  Cry, cry cry.  OH WAIT, the little blanket she went to sit on had a FOLD IN THE CORNER.  She went ballistic.  UGH.

Are you guys getting the point?  I’m actually not making this up.

And these are only the parts that I wasn’t able to put out of my head.  I think my ears are bleeding.  Why does she save this all for me?  Why?  I mean, ultimately I’m glad that she’s so much more contained and happy for other people.  But the poor mom needs some love too, you know????

[this is emma last week, when her poor nose/upper lip was sore from blowing her nose so much.  She HAD to have a bandaid on it.  It was interesting watching her eat a grilled cheese sandwich like this…]

Emma’s Third Birthday

Emma turned 3 years old on Valentine’s Day.  Our little sweetheart had a wonderful time…  Lots of balloons, a train cake, pretty dresses [notice her outfit change partway through the photos], family, etc.  It was a really nice day, and overall she did very well.  No meltdowns or anything!  She did go to sleep at about 4pm….  That’s what I’d call worn out!

Well, try this instead:

A few things about Emma.

She’s been sick, forever, like all of us here.  Oh, here’s a new one!  Emma is now chewing gum!  I am pretty excited about this.  I mean, aside from cleaning gum out of hair, upholstery, pockets, and god-knows-what-else [It will all happen eventually], I hope that it can be another inexpensive trick for my tool-box.  She loves it, it’s great sensory input, she needs help with chewing skills, blah blah blah.  🙂  Yae.

Her preschool was just so impressed the other week.  Apparently somewhere they had a play-doctor kit.  Well, Emma took charge, and quickly found herself doctoring the entire class – including the teacher.  Ha ha!  She was checking blood pressure, looking in ears, listening to heartbeats, and taking temperature.  I told her teacher, “Lets just sum it up to the many, many doctor’s visits that she’s had over the last year.”

She has now gone from screaming and hitting our two dogs, to screaming at them, “GO WAY DOWN!!!!!! WAY DOWN NOW!!!”  [lay down]  Well.  At least its more verbal, although still somewhat abusive.  Everyone seems to talk about how animals [ie, the dogs for autism etc] have been so amazing for their child.  NOT EMMA.  I don’t know what it is, but she just won’t bond with dogs at all.  Fish?  Now, fish are a-okay.

OCD has been emerging a bit, I can’t say that’s fun.  She had me ripping off her dress in the Goodwill parking lot the other weekend, she swore [screamed, i guess] that it was dirty.  That was after 10+ minutes of me trying every trick in the book to distract her, or get her to realize that her dress was actually still clean.  Ugh!  Her hands are very raw and sore from hand washing.  I broke down and got some super-mild oil of olay facewash for her to use as hand soap.  I guess I shouldn’t complain, some people have real issues getting their SN kids to clean at all.  At least Emma wont stink [yet].

She has taken up a little bit with orange soda.  I can’t say I’m EXCITED about that, but, a little bit of variety away from the chocolate milk is nice.  At least she will free up a little bit of her drinking away from a food-like liquid, and maybe have more of an appetite for food.

Well, that’s enough rambling for today… I’ll leave you with one last Emma:

Emma loves putting playdough into the garlic press and making long, pretty colored POOP.  Ha ha ha ha!  I keep calling it hair, but she just won’t buy it.