On Sharing

I recognize that a small part of my hesitation in sharing these less-positive parts of my life come from the feeling that it’s like a horrible car accident people are driving by. MY car accident. I’m on the side of the road, my underwear shat in, my car is totaled, and no one driving by can tell if it’s my fault or not. My hair looks awful and everyone around is crying hysterically as papers, dirty laundry, and other belongings thrown from the wreck hang all out for passersby to see. It’s ugly, and it’s personal; I am on fire.

You can’t help but slow down to about 2 MPH and get a good look at the gong show as you drive by with your own little traveling circus, because mine is so rich with it’s own unique awfulness. That’s for the people whose lives have never been routinely and in-depth affected by a person with an emotional and developmental disability. “Wow. I had no idea that’s what [it] looks like.” Meanwhile, I’m still kind of trying to pretend that I know what I’m doing, and living a normal life.

That’s what blogging about my life and my shit feels like, in some ways. It’s extremely humbling. Yet I don’t want pity. And even though I don’t want anyone to talk to me about it, I’m dying of isolation – I want people to talk to me about it. All the time. I can’t win.

And for the people that read and do have some idea of the different levels of hell I deal with on a daily, weekly, or monthly basis [they have their own road-side car accident, and are on fire, too] I fear judgment. I fear that my hell is WAY better than their hell. I feel that no one can really understand, and so sometimes the idea that someone thinks they might understand is annoying and frustrating. It makes no sense. None of it.

When it comes to my family, same thing. I wish that they really knew what I was going through. What life with Emma was really like. The insanity of her sweetness combined with the hysterical demon-self that ravages our lives. Yet, when they really understand – I DON’T LIKE IT. I want them kept in ignorance: maybe things are okay. Maybe Daleth is okay. It’s almost as if I need my family to have that hopeful inkling that things will turn out ‘normal’ someday and keep that thought alive FOR ME, because there is no way that I can personally keep that hope alive right now. And if I fill them in about my life, they might lose that hope too — and then who will keep that torch burning?

One of the reasons I’ve avoided blogging and talking too much about my life with Emma is because I’ve worried it will affect my career. (insert laughter here, please.) Well, my career has been ended, at least for the moment, because of Emma’s needs. Another reason is because I worry that friends, family, and co-workers will pass judgment on my ability to function and be present for them. That they will …kind of… find the strange parenting life that I have and my stresses as too much of a delineation. That perhaps we just don’t have enough in common [because of my life with Emma]. This is probably an irrational fear, stemming from an experience as a pregnant teenager dealing with losing my high-school friends. I recognize. I process as I write this. That’s why I’m doing this.

It’s like, if people see how broken my home life and mental state with my daughter really is, they will think that I MUST be as broken as she is, and treat me like I am disabled too.

*hmmmm.

Well, this week, I feel a little bit that way. Ask my husband and my two sisters. I’ve been living in a war zone. I’m feeling damaged.

I promise that future posts might possibly have more of a point, and content, and something to be gained from reading. Thanks for being here.

 

This Blog Reborn: You Have a Choice

Greetings readers and followers from the past…I am back, and I’m here to stay. However, I’d like to make it clear that you have a choice to make about your mental involvement with this blog. I am not exactly the same person I was when this blog was created and you started following it (likely you are not exactly the same person, either). Also, this blog will not serve exactly the same purpose it did before.

I am not here to share multiple fruitful blessings and gains, celebrate successes, and share my cute little tricks on how I got my daughter to wear socks or eat some stew. I’m only here for me. Because I am the only one that CAN be here for me about this, and it is through writing that I can serve myself as a support. Times have been hard for my daughter, and – of course – this means that they are very hard for her parents and family as well. Part of the reason I stopped blogging is because I felt so down and negative about it all. I am NOT a happy camper. No one really wants to consistently hear about my shit. It’s not a way for other autism parents to move forward with a positive attitude. *but, again, I’m not here for anyone else anymore.

It’s me, and my sanity, in a warzone against the raging forces of Emma and her constant battle for happiness in her irrational, unpredictable world of pain and victimization.

Please read my disclaimer page and know that I really mean it. I curse, I vent. You may find yourself written about on here. That includes my family, friends, co-workers, ex-husband, sisters, mother, daughter, son, etc etc etc. You get it. It’s my life. I’m simply opening the door to exposure because I need people to read what I write. I can’t explain why it helps, but again, it’s all I’ve got.

Thank you for being here for me, I have many things to write about.

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!

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?

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.]

Momentary Delay

Ugh.

I’m not feeling eloquent, folks.

This week:

-I destroyed next semester’s school schedule

-Found out no school has room for my daughter, so I don’t know if she’ll be getting any therapy after February [without a f.ing lawsuit, at least]

-Had social services calling me to see if a young man from my son’s school could come live with us for the rest of the school semester

-Found out Emma has severe eczema, and we’re now suddenly sans-frangrance

-Burned my chest and right arm [minor – thank goodness] with hot caramel while inverting caramel rolls

-Dealt with a DD two year old on steroid cream, having an allergic reaction to steroid cream, all day

-Just got done listening to a close relative tell me that Emma is doing just great, and that young people just expect too much from children these days [lots of inferrence here as well]

-And more.

I just can’t seem to sit down and really write anything worthwhile to read about all of this, I don’t know why.  I’ve tried probably four times. >>sigh<<

I’m sure I’ll be back,

Daleth

A Holiday Done, Gone, Finished

Well here I am, sitting at the dining room table on a Friday night. The kitchen is kind-of cleaned, Emma is sleeping, R. has a friend over and they’re gaming-out upstairs, Bob is watching a Letterman re-run, and friends, it’s COLD outside!

Being that this is a blog about my autistic daughter, I’m sure that you are wondering when I’ll tell you the juicy tidbits about having a DD (developmentally disabled) toddler during mass-insanity.  First, a little soapboxing: I don’t care anymore whether it’s my “autistic daughter” or “daughter with autism”.  The whole people-first-speech thing really gets in the way of my brain flow.  OF COURSE it’s my daughter first and her DSM-IV lable second. Give me a break.  We’re nearing the second decade of the 21st century… honestly: autistic kids, or kids with autism; people that fear the disability will put their emotional impact on the autistic part no matter WHERE you put it in the sentence.

There.  Phew.  Thanks for lasting through that little rant, and now we’re on to the holiday…

Emma was in fine spirits.  The excitement of the fresh, new meat to charm-to-death was nearly intoxicating. She was a butterfly on crack, and we all had a blast. The crescendo of the holiday week came on Thanksgiving day.  I had been up past 3am the night before cooking apple pies, fresh rolls, and shelling those $#%^@* chestnuts for my dear husband’s only TDay wish (chestnut stuffing).  That morning we were both tired and I foolishly told him that he could slip back to bed for a little bit. Somewhere around then is when hell started blowing, gently at first, and rising to some sort of full-gale around noon.  Emma was a crying, head-banging, attention-needing, stubborn, dish-washing toddler. I was a solitary woman attempting to prepare a large thanksgiving dinner all on her own.  It was a BAD, BAD combination.  Somewhere along this path I managed to royally twerk a few of my relatives off, hence destroying the mood of the holiday for everyone.  Ugh. It’s so hard to remain perfectly pleasant after struggling through the hours before.

Emma was wound very tight, no nap and picking up on the local tension.  She refused to eat anything we put before her, and went on to scream hysterically (while we were sitting down trying to eat) because she wanted the pretty dress off, and the swimsuit she’d found ON. (I hide all the fairy dresses and swimsuits, and thought I’d thrown this one away. I have NO idea where she found it!)  For the peace of mind of my guests, I finally just gave in.  The size 18 months (she’s in size 4T) Dora swimsuit was donned.  It dug in her flesh and barely covered her nipples, but it made her momentarily happy.  We rejoined the dinner table. About 4 minutes later Emma wanted to sit on my lap.  About 2 minutes later she wanted to sit on my dinner plate.  (No, I’m not joking.) She wanted to sit on the table, plate or no plate, potatoes or no potatoes.  She was screaming, I was holding her up a bit to prevent the mis-hap.  Her swimsuited butt was pointed out at the entire lineup of guests across from us at the table, dangling dangerously toward my chestnut stuffing.  I was a little red from embarrassment but couldn’t help giggling; the struggle went on and on as I attempted to convince her that she really should sit on my lap.  This was all just a little bit too much;  there was no negotiating or distracting. Finally I stood up and we struggled more as she turned into jelly girl, attempting to slip down through my arms like a puddle to the floor. 

Emma went to bed and screamed while we finished our meal.

There were lots of dishes, leftovers, and still-strange currents from my early frustration.  On a good note, later in the evening with Emma in bed, my dear husband and I had a heart to heart about family and ourselves, and how perspective helps in dealing with both.  It was one of those times that left me feeling very close to him, a feeling that hasn’t been around very much lately.  It was a beautiful end to an interesting day.