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

Small Victories

There I was, crouched on the floor in front of Emma with tears of pure joy streaming down my face. Did I mention she was sitting on the toilet? Pooping? No?

When I talk to others about the ecstasy of the small victory I’m not sure they get it. Right now it’s the most beautiful and important gift that autism has brought to my house; it cannot be underestimated. It brings me to my knees – and sometimes on a daily basis.

You know, other parents have to wait for successes. Their kids need to win something, exceed their peers in some way, show an amazing aptitude, keep their room clean for a month. (Hell. I can’t even do that!)

Not my girl. She just needs to sit there, legs swinging on the porcelain god, humming a little tune under her breath. It’s been six months since she would get within 5 feet of a toilet. I have renewed hope, and there are no gold or jewels that could compare to the preciousness of that.

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!

Because It’s True

I’m laid up. I had foot surgery last week. Everything went well, I’m in no pain, but I can only spend 15 minutes of every hour with my foot NOT elevated. And that 15 minutes includes no contact with the floor. It’s not easy to get around!

This whole time could have been an absolute nightmare, and it hasn’t been. My dear mother, who is ready at the drop of a hat to help her children whenever possible, came down to take me to the surgery and help with the ensuing chaos.

And believe me. My house is chaos. Between me being grumpy, Emma’s insistent nature and house-destroying abilities, and my incredibly messy house… I think we about did her in. 🙂 But she was here, with grace and [usually] patience, to ask me if I needed a drink or a kleenex, or a pill, or anything my heart desired.

If only everyone was so lucky!

Summertime and Dinnertime

Hmmmmm…..

I’ve spent the last two weeks transporting Em and myself [and my momma, that was kind and valiant enough to join us!] to and from Denver for her intensive feeding clinic. It had its ups and downs – but I tell you – she ate! If any of you out there have a child with restricted diets and eating issues, and would be interested in learning some of what we did, please let me know. I’d be happy to share! 

We also got to take her to the Zoo.  She enjoyed the animals for the first 30 seconds, and was then in total and complete awe of the strollers, babies, and curbs/sitting benches to climb and jump off of. 🙂 I took lots of pictures though, because she did SEE the animals, and might be really happy to look back and talk about it later. She has a really great memory, so we’ll see.

I’ve been cleaning my house and trying to get some semblance of normalcy before my foot surgery in < two weeks. Emma has been having a BLAST lately, in absolute heaven. We go outside, she plays in the mud and the kiddie pool. She helps water the flowers and plant new ones. She changes her clothes every 5 minutes. She runs outside to pee in the grass. {Yeah, I know, not the greatest thing} There are underwear and pull-ups all over the house and property right now.  Ha ha ha ha! 

She’s continuing to broaden her vocabulary and language ability, which is wonderful, mostly. It’s when we’re having dinner [or whatever] and she starts screaming at us to “STOP TALKING, BE QUIET!!!” over and over, until we eventually DO shut up that I wonder.  😀

Her play and imagination skills are also vastly improving. No, they still aren’t anywhere close to ‘normal’ or typical… but they do exist, and are rapidly increasing. What more could I ask for? [besides a mute button]

Sunshine is here. We’re all pretty happy…

On a last and final note, food for thought… would you give up your child’s disability? The chance for the same ‘chances’ as any other child? For reaching expectations? For more peace and security????  BUT, would you be willing to give up the incredible uniqueness of your child? The poignant lessons they bring to others? The fact that your child is never forgotten, never leaving a person untouched and unchanged? What would you ‘lose’ if you lost the ISSUE? 

I dont know, I don’t have any answers. I just found myself in a very very strange and confusing place [emotionally] when trying to consider this question.  I couldn’t say one way or the other. Isn’t that WEIRD?????

Any other parents out there that have a non-typical child, how do you feel about this?

Sweet Nothings

I have a secret.  It’s a guilty, sweet, delicious private joy of motherhood.  My little terror-snugglecakes daughter with autism does have a gift.

How many mothers remember and miss that precious snuggling baby? How many have forgotten or never known?  It’s one of the things that keeps parents going during long nights of crying and long days of dirty diapers.  It’s the tiniest arms that hardly reach around for a proper hug.

Emma, in all of her strangeness, loves babied affection like none other. She wants to be held, lotioned, rolled up in a blanket and rocked.  Sing to her, let her smell in my skin like a lilac bush… she is in heaven.  Wipe away her tears, stroke her cheek, more more more.  It’s never enough for her…

She doesn’t care how badly I sing, that I don’t know the words. She sure doesn’t know them either.  Her knees are tucked up under my arm and legs dangle awkwardly – she’s getting really big. But I can kiss her nose and her cheeks and hold her oh-so-tight. I think its about breathing in joy, you know?

Will she always be this way?  Maybe not.  But, the guilty part, is that she really might be.  Even if she’s 20, maybe I’ll sit her down on my lap and sing the songs we both dont know… and she’ll drink me in, and I’ll love every second of reprieve from what’s really going on.

And I do, love nearly every second of it.

There’s this disaster-mess of parenting that lies all around me, all the time.  It’s called ‘raising an autistic toddler’.  And in the middle of the mess of my life, I can take five and just rock my precious sweet girl.

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.]