small circles

One thing I’ve recently absorbed, is that nearly everything really does change. With the exception of lack of sleep (which is a big deal), many of Emma’s challenges have morphed. Even slight change leads to new feelings of elation and at times desperation. But hey – at least its a new desperation.

It’s forcing me to come to new alignments with parenting, patience, positivity and hope. I mean – to really internally register that “XYZ” won’t be  in its exact same form forever is liberating. I know that there are certain actions that we, as parents of a child with autism, may have to deal with on a long-term basis. But I’m focusing on all of those other things…

I think the trick to “the allowing” is to do your best to SHHHHHH- fear responses. I’ve found that I try to protect myself from further disappointment by fearing the worst. That “XYZ” will NEVER change, that it will get worse, that it will be bigger and heavier and stronger than ever. This same protective fear doesn’t allow me to appreciate when things lighten in a certain area. I sometimes don’t even see my little reprieves, because I’m fearful of it changing back – or turning into something WORSE.

Here’s a funny example: Emma went from wearing only dresses and sometimes pants, to suddenly only wearing stretchpants (leggings). This has become very problematic. After about 6 months of this, I went ahead and got rid of a bunch of new jeans I’d gotten her. Why wait? Several weeks later, she suddenly wanted to wear JEANS. Of course, right?!?! I found myself just fearing that she’d go to ONLY wearing jeans, and not any of the 900 new pairs of leggings we’d gotten her. I saw $$$, I saw fits, I saw my daughter refusing to wear another pretty dress.

But this new little voice speaking let me know that it’s all right – – It’s okay to enjoy progress. It’s okay to celebrate her victories. It’s okay to take a big, HUGE  >>sigh<< of relief that a behavior might be going away, however momentary.  There are always new challenges. But I’m discovering that preparing myself for future challenges by NOT enjoying current victories is really short-changing and ineffective.

NOT that any of you ever do that, with your autistic child, typical child, or any other part of your life. Heh-heh!

Anyway. Enough introspection. Whatsup here????? Well, I’ve been very bad at posting, obviously. For those that don’t know, I’m working towards my bachelors degree at a local state college. This last semester I had to take 6 classes at once, four of them studio classes. Translation = CRAZYTOWN. I’ve also been working hard with some very impressive and dedicated women in Oregon on our new non-profit, The “A” Team Justice League, AKA “The A Team” (You can find this group on Facebook). Lots of details we are still working out, etc. I’d love for you all to check out and befriend our website at www.theateamtoday.org. I’ve also edited and produced our second publication of LoveABLE News. ‘Folks with autism in your lives (and those that don’t!) PLEASE check out this newsletter. It has so many hysterical articles, and some wonderful perspectives, reviews, etc. You don’t have to live in Oregon to enjoy and participate; I live in Colorado!

I was working a bit on the website, and decided to throw all of my blogroll on there. They’re all great, wonderful, articulate people dealing with autism in their own or kid’s lives. It suddenly made me SO homesick! I miss reading everyone’s words, and lives, and used to feel like I knew what was going on with the peeps. But it’s okay. I’ll be a loyal reader/commenter again, hopefully soon.

Emma is just growing like mint. 🙂 She’s cute, cuddly, and as non-negotiable as ever! She’s really making some great progress. She can write her name sometimes, and has started drawing some figures. She also made up her first song last week, it goes:

“Momma likes peanut butter, Emma doesn’t.” (refrain)

So cute. Two days ago she started switching Momma and Emma around, for humor effect, I was really impressed and have to tickle the stuffing out of her when she does it.

Her anxiety and OCD issues have increased drastically, but hey, that’s for another post. We’re sticking to the positive right now. Right???? Lots of love to my loyal readers. Love you all!

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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.]

Realizations About the ‘Why Me’ Syndrome (AKA: Killing Bad Thoughts)

It was the beginning of June.  Here in my neck of the woods, the leaves were just beginning to explode in full green-gloss.  The sun did shine.  My first semester of school was over and the grades posted so that I could pat myself on the back a little. The semester had been difficult, it had been 15 years since HS and my first time in college. We were also dealing with the initial evaluations on Emma, the possible need for speech therapy, investigating referrals for service.  And we received the first main batch of tests back for Emma.

PDD-NOS?  A disability? Therapy? Developmental? I felt myself moving a bit towards the mental range… among all of the thoughts that cut, fester and circulate during times like this, it was one of the selfish-selfish ones that provoked the most tears.  It was a self-centered, self-loathing, and obnoxiously whiny.  It wasn’t just “WHY ME????”  It was “Why me?  I ALREADY DID the whole “I have a challenged child”.  I was SUPPOSED to get to enjoy having a normal parenthood.  I was SUPPOSED to have a non-special-needs child.  THIS CAN’T BE HAPPENING!” (for those of you that have a disorder or etc, please don’t take this wrong… it’s just that as a parent I was feeling selfish and a loss of my certainty of the future.)

There are all sorts of mental frames we can put our mind and hearts in, and I’ve been racing through them as fast as possible.  I realize that I can have greater understanding for others through this.  And expand my self and knowledge.  And perhaps gain clarification for my future career, with a certain new passion for helping others.  There is a world out there that I was mostly unaware and ignorant of, and I want to not only get over it – I want to feel blessed by it.

But I have to admit that almost 6 months later, that original horrible thought pattern still comes around every once in a while. Until.  Yesterday.

There was bad-thought-blood and triumph all over the shower, I think I killed it…

It began as a spark of ‘what if’.  Which led to the realization that my son’s (now seemingly minor) issues really were just a precursor.  A break-in. A method of adjusting my parenting and self to what was coming my way. Not everyone gets that, you know.  I have qualities that my friends and family could say are good, but I have to admit that before I had my son I was very impatient and somewhat self-centered. R. is truly an amazing kid, as he made it through my struggle as a young un-married mother. And helped me come out of it a much better person, and certainly 1,000,000 times more fit a mother for a delicate and challenged girl like Emma.

I’m ready to take on the world.  I rally for therapy and support in a very unsupportive environment (speaking of location in the state, etc.).  I am an old pro with the IEP, and schools, and teachers, and all the misc. crap in between. I am as patient with her as I think a person could get, and I have to put so many of her needs before my own.

In essence, I guess Emma should be thanking R. too.

How many parents get a test-run first?