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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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……….

 

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?

Big Changes

I can’t say that the road has been easy ladies and gentlemen, but I can say that SCHOOL IS OUT!!!!  This semester has been just a little too full for both Emma’s and my liking. She will miss her school and daycare, but it will sure be great to spend time at home together.

We took Emma to the dentist about 4 weeks ago [her first trip]. The dentist couldn’t get good xrays, and couldnt get a great look in her mouth, but found a ton of cavities. Of course, it’s all our fault. But we’ve been doing the best that we can with what we have and it will just have to do. Emma, who for the first 3 years of her life has refused to let me do more than just barely skim the front of her teeth with the brush, let the assistant do a full brushing on her mouth. I couldn’t believe it! I was just like, “Turn me into a big fat liar, why don’t you!” 

HERE IS SOME GOOD INFORMATION that would have been nice to know years ago. She told me that children with certain issues usually don’t like having their teeth brushed. She said to try laying her down on her bed, the floor, or in a recliner, with a cozy pillow and blanket. Then brush, and make sure that I use my finger to hold the corners of the mouth out so that the brush doesn’t pinch the edges when moving in/out.  Well, it hasn’t been perfect, but I have been getting much much much better results. My theory is that sitting or standing and having all this mouth stuff going on might make them feel like they are off balance or something [?] and perhaps laying down and being cozy helps with sensory issues too…

Who knows. Anyway, we are set up in July with surgery at The Childrens Hospital, where they will put her out and see what all they need to do. Maybe she’ll end up with a mouth of pretty, sparkly, silver “princess teeth”. 🙂  [everything sparkly is ‘princess’ around here].

The other good news x2.

One, Emma is starting to potty train. When at school, she uses their little toilet all the time. She went in underwear on her last day and didn’t have a single accident. The next day she went to my sister’s house to play, and didn’t have any accidents either. Yesterday [at home] there were two accidents, but honestly, it was totally my fault.  ACK.  I am not used to having to check in with her about having to go!  I totally forgot, and I guess she did too.

TWO. We have had two nights with no chocolate milk. No strawberry milk. No juice, milk, just a sippy cup full of water.  The first night sucked although not as much as it could have. She woke up at 1am and wanted her chocolate milk, and it took an hour+ for her to get back to sleep. Last night, she was a little upset at bedtime, but didn’t wake me up about it once. Yes! I know that I’m not really over the hurdle yet, but I’m feeling heartened and hopeful.

After Emma’s dentist appointment we went to visit one of my DH’s dear friends.  Emma and I took a walk outside, and she got to see her first worm. OH MY GOODNESS, it was the coolest thing she had ever laid eyes or hands on!!!  It was so cute and sooo funny how she acted with it.

We’ve got this next week to get the house clean and the laundry done, and then were off to The Childrens Hospital for her 2 week feeding clinic. I’m excited to see what kind of results we get. Anyway, I’d love to post more, but hopefully you will understand that after the end of the term I’m just all-writed-out.  ❤

On Losing Therapists

[Preface: This post does NOT mean that I do not reap benefit from the support and love that I do get from my family and existing friends.  I love and appreciate you all, for everything that you do have to offer. <3]

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I found out this morning that I am losing the second of Emma’s two original therapists, J1 and J2.  The first ‘left’ when Emma turned three, due to age requirements. The second one is moving to a different facility that will help immensely with her home and family life.

I found myself using all grains of mature and philosophical matter within my being to remain happy and understanding throughout the therapy appointment with J2 this morning. I had to move into a state of denial, at least for the 40 minutes or so after the news.  But after I had dropped Emma off at daycare I found myself sobbing in my car.  Looking for some healing, I bought a venti-cocoa cappuccino from SB and headed to the nearest school computer lab to write-myself-okay. Well, I still find myself in tears.

So Folks, here is a glimpse of my self talk and inner working, all live timed and personal.

I don’t think that I’m just dealing with the loss of J-2. J1 moving on sucked really bad, and I kind of just kept telling myself, “It’s okay, it’s okay, we’ve still got J2…”.  So, now I’m forcing myself to deal with both of them leaving, I guess.

For those that have not experienced this, I’m not crazy and I’m not pre-menstrual. I think the whole deal has to do with the isolating world of parenting a special needs child.  It’s an amazingly solitary act.  When you find yourself a mother of a SN child, you lose all manuals for motherhood.  You no longer have the network of typical child-rearing practices.  All the books, the magazines, TV shows, doctors?  Most of them are useless.  You no longer have satisfaction and trust in the advice and experiences of those around you either.  Your mother, aunts, grandparents, sisters, and friends have very very little to offer in the means of advice and true understanding. It’s what can make me, at times, feel like I’m an alien living on a planet of other people.  And at other times, its the same thing that makes that one or two people that live across oceans seem so close.  It’s true understanding and relating to this wild world of autism.

My therapists are the closest thing I have in my real-physical life to the book-doctor-mother-sister-aunt-manual for how to live my life with my autistic daughter.  I have an overwhelming need for them in my life; who wants to raise a child alone in the forest? Or in my case, in a dry, windy valley at 8,000 feet above sea level?

J1 and J2 stepped into my [at times, and especially then] miserable, confusing life with the grace and compassion of a goddess.  And now they are gone. They both have lives to live of their own, their jobs to do, and other beautiful people to help.

But, oh dear, what in the world am I going to do without them?

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.