Attitude

I’m sure you all have seen this image. 

I remember my mom had it hanging up  at her office job years ago. I was maybe eight or nine but always found the way the frog is struggling for dear life absolutely terrifying; unsure if it was the intense grip Kermit had on the bird or that I can't see his face at all... but there it is. Admittedly, years later I still find it disturbing. 

After reading over past entries I came to one conclusion.  Man, I was a whiny bitch.  All I saw were things like "she was due" and "mandrake" written over and over again. Word after word about Evie screaming, crying and me having a bad night and aside from the most recent post, nothing very positive. 

I used to believe without question you if you're having a good day or a string of them in a row, most likely everything is going to hit the fan so prep yourself. Over the past few months I've slowly come to the belief that the every day attitude you have has a major affect on outcomes in your life. Don't mistake me for downplaying mental illness such as depression but for the mentally healthy individual, attitude really is everything. 

Secretly I've known this for a while but refused to practice it. Cynicism was my comfort food, it's safe. I'm familiar with it. Having a more positive attitude about things, not so much. Why be happy and enjoy the moment when something horrible will happen, right? Some challenge or unexpected life event will inevitably throw you through a loop and you'll just be right back to having a crap day. I had the biggest unexpected shake up of my life about six months ago which has changed the course of not only my life, but the lives of my children as well. Interestingly enough, around this time I started seeing things like this on social media:

Cheesy right? However I started to see what the Facebook gods were telling me. Yeah your life is complete shit right now but work on your attitude. It wasn't easy. In fact I hated waking up every morning and literally praying to be happy and have a better attitude. You know what though? I used to only be able to do three push ups. Now I can do two sets of fifteen. Having a more positive attitude takes practice and although I'm on my knees for my push ups and I still have a bad moment or two (usually at work- it's on my list,)  I've generally become more happy. Sure shits going to hit the fan but like those push ups, practicing a better attitude becomes easier thus really makes a difference on how you begin to see, interpret and deal with challenges. 

So what does this have to do with being the parent of an autistic kid?

Two nights ago, Evie was throwing her classic tantrum. Sure they've really become few and far between but it seems she's mentally about two and a half and as such, if she doesn't get what she wants, we all have to suffer.  These episodes don't last more than maybe ten minutes but during those ten minutes gouging your ears out with Q-tips or better yet a sharp knife starts to sound pretty good. Strangely enough though,  and for the first time, I didn't feel that way. I took a mental step back and had a good look at what was going on. 

This beautiful little girl who has no choice in being mute, and unlike most nonverbal autistic kids doesn't bite, hit or punch,  really just wants to watch more tv and was using this, what does her school call it, maladaptive behavior to communicate. Yeah it would have stopped the screaming had I put the tv on  but that would just reinforce her screaming for next time. Meanwhile, my fourteen year old was making dinner for the family, again. Without being asked. She not only makes dinner frequently but cleans up after too. My oldest was off working where she has begun to pitch in for bills, without being asked. My son was downstairs cleaning his room. Of course I had to ask him but he did it without complaint. 

I'm grateful for my kids. I'm grateful for the more positive attitude I've been able to develop because of what happened and all I can say to the next challenge, bring it!

Ten Best Things About Having a Non-Verbal Autistic Daughter

"Yes, there are ten," I reassured my husband over a breakfast of brownies early this morning. (I don't know about you but I'm all about feeding my feelings.)

1. You don't stress about teaching them things like how to tie their shoes or ride a two wheeler.
2. You can dress her however you want. No arguments about oversexed clothes, inevitably escalating to age appropriate discussions regarding our cultures expectation and the subsequent unfairness of female modesty.
3. You don't have to worry if they'll choose the right friends to hang out with or not.
4. Sibling rivalry with your other kids? She's above all that.
5. Tired of spending money on Polly Pockets only to vacuum them all up? No worries there.
6. Debates and/or negotiations over curfew? Nah, she loves being at home just as much as you do.
7. No need to buy a shotgun to scare her first date.
8. You know those awkward years when all you want to do is give your kid a hug but know if you do you'll risk them yelling, "MOOOOM!!!" only to feel ostracized by them in the days that follow? Yeah, she's all for parental hugs.
9. No sitting around the kitchen table, looking over their shoulder, struggling to understand how to help them with their homework without admitting that they may just be smarter than you.
10. No goodbyes.

My oldest daughter will be eighteen in just over six months. She has always been independent and stubborn which, if I'll be completely honest, she inherited from her mother. Lately I've been thinking back to every choice I made with her; curfews, friends, dating, school and the like. Was it the right choice? Should I have done things differently? What about in this situation or that? The stress of having a child who will soon have the choice to leave home I want to say is probably one of the worst kinds of stress you can have as a parent.

Aside from a few months here and there, I ultimately left home when I turned sixteen. I never had that official "goodbye" moment with my own parents until they retired a few years later. I was a single mom of this soon-to-be eighteen-year-old-of-mine-newborn, I was self-sufficient, and had my own apartment. I grew up very quick and had multiple rude awakenings that I never want my own children to experience. But I think ultimately I, along with any other parents reading this who may soon find themselves in the same position, need to take comfort in that you did the best you could in any given situation at that time. If that doesn't bring you peace, then just reach for the nearest batch of brownies.

Yes having a perpetual child for the rest of your life hinders any plans of extended backpacking and trips to Europe, but she's yours forever; stuck in the most literal version of Neverland that I could ever think of.

Sundowners

For the past couple of nights, Evie seems to be going through the Autism equivalent of sundowners. She’s sweet during the day, happily stomping around the house doing her own thing but after five, little Miss Hyde comes out. Dinner can’t be cooked fast enough and nothing can be done to keep her happy for even twenty minutes, making for twenty minutes of pure hell. (1200 seconds if you were wondering.)

She doesn’t scream per se, it’s more of an intermittent whine or stuttering cackle of varying decibels, something like those mandrake things in Chamber of Secrets would do before they let out the blood

curdling scream requiring earmuffs. While she’s doing this, she’ll move from myself to the hot stove with ceramic shards sticking out of it, to the fridge where she tries so hard to open it, shaking the appliance in the process. I’ll get her some milk, she’ll take a sip then throw the cup, spilling whatever leftovers everywhere then start again.

It went on for almost an hour tonight. At one point I had thought of filming it, but ultimately couldn’t. There are a couple things about autism that bothers me. The notions that 1. They’re all the same-that because your neighbors brothers kid has autism you somehow know what we go through and 2. All the happy feel good stories about autism; “Car wash employs autism only workers.”  and my personal favorite “Autistic girl competes in beautypageant.” (yeah I'm calling bullshit on that one.) Don’t get me wrong, I see some benefit from sharing such stories but it’s not real. Not for the majority of parents with severely autistic children who can’t do such tasks. Instead of inspiring they make you realize what your kid can’t do. 

A couple years ago, a New Jersey woman (I think) filmed how she calms her full grown autistic son while he’s having a meltdown. Twice her size, he was swinging his fists and banging his head on the ground. At first, seeing a parent physically sit on her child it’s easy to scream child abuse, but looking at the big picture, she did what needed to be done and no doubt later, she cried.  I applaud her for doing that as it paints a very realistic picture of what parents go through, with no fuzzy ending.

I didn’t film Evie because,  ultimately she isn’t that bad. Yes even being completely non verbal, screaming, pulling with all her might to open the fridge (doors are secured with a dog collar), screaming, dumping milk everywhere, screaming, not sleeping at night, screaming, and being unsafe on playsets she doesn’t get physically abusive which from what I understand is practically unheard of in a non-verbal/non-communicative child. I don’t know, maybe I should have. For empathy perhaps? Showing the interwebs my daughter isn't always sweet? I don’t know.

What I do know is over the summer she’s beginning to be more physically difficult in other ways. Since she is too long for the bathtub, she wont lay down. We don’t have a sprayer hose (thanks to her extremely active and imaginative older brother) which makes bathtime very difficult. Attempting to maintain good body mechanics  is near impossible when trying to keep a 7 year old kid in the bath. I still have to pull her out of the car and she’s staring to realize, if she death drops to the ground when her sibs try and bring her inside, they stop and she can run off. This leaves my husband or I to carry her in. For the past month or so I’ve started to get really bad back aches. I thought maybe it was due to not rotating my work shoes… And sleep. For a while she was sleeping through the night but now she’s back to being up laughing, playing, hosting Evies dance party, party of one from 3am till 6am. People wonder how I can work night shift. It’s because I get the best sleep during the day since Evies awake and out of the room.

I don’t know if she’s just getting older or she realizes that she wont be going back to her school anytime soon. Yes that school. The school we moved here for and essentially sacrificed the well being of another child for in moving here. Her schools program is changing due to fiscal reasons and although ultimately it’s for the better, unless your insurance covers ABA (the only evidenced based treatment of autism) the monthly cost is unmanageable. Of course here in Utah, location of the highest rate of autism in the country, the major Utah based insurance company doesn’t cover AB,  now giving us a slew of new hoops to jump through with the slight chance she’ll still make it before January.

In the meantime, she’ll be at home. Yeah we could put her in our local school but then it just brings it all home that we basically came to Utah for nothing. I know I need to have more faith things will work out but I’m tired. I’m exhausted. My family is exhausted and positivity seems to be a rare commodity that takes much longer to replenish after being used nowadays. 

We were due.

Passed my NCLEX this week and can officially say I an now a Registered Nurse. I still have eight classes to take until my bachelors but I am taking one at a time to give myself a well-deserved break. No more clinicals, no more labs, just 24 credits of literal BS. Nursing theory, nursing management, evidence based practice... At least with this program I can choose two nursing electives and I can't tell you how much I'm looking forward to NRSG 3070: Threats and Crises: Nursing Response. Terrorism, wars, and natural disasters here I come!

But I had just finished an assignment that is due tomorrow earlier this evening when Evie, who had been feeling off for the past couple days, had reached her point.

Normally, she is a very easy going little girl. When it was time for dinner, even before dinner, she was crying. I wish I could give you something to compare it to but the best I can is to that of a mandrake.  Not as high pitched but just as loud; best I can describe it is colic but with the lungs of a seven-year-old.

We took her temperature, offered varying episodes of Spongebob, she had pooped today but still she screamed. Now she ads hitting with her screaming. Not us fortunately, but whatever inanimate object is closest to her. (However, she did have a record eight attempts at biting us out of frustration.)

We tried to feed her one of her favorite meals. She wasn't having it. After ten minutes of even more screaming and pounding on the table we figured she was exhausted from not sleeping well last night and I decided to give her a bath.

I ran the water a little warmer than usual (she loves it at near hot tub temperature), stripped her down, put her in, and knelt beside the tub.

Her screams slowly turned into whimpers as I reached over and slowly poured water on her back, moving up to her hair.

There's a song in my religion that will bring a parent to tears particularly if there is something challenging with their children. I started to sing. Admittedly, I can't sing worth crap but it was more to calm myself than it was for Evie.

I am a Child of God,

And He has sent me here.
Has given me an earthly home,

With parents kind and dear.

Lead me, guide me,

Walk beside me. 

Help me find the way.

Teach me all that I must do, 

To live with him someday.

I am a Child of God,

And so my needs are great...

It was at this point I could not continue and became a hot emotional mess. However, Evie was now lying back in the water looking up at me, making a connection that I have not seen for a very long time.

So I continued...

Help me to understand His words,

Before it grows too late.

At this point I heard, "Pull up your pants. Your butt crack is showing" coming from my nine-year-old in the hallway.

Already upset and drained, I naturally yelled at him which, naturally, set Evie off again screaming.

I started to sing again and to my amazement, she made eye contact with me and settled down. Then I realized, she wasn't looking at me, but at the vanity light over my right shoulder. There wasn't any real connection, it was just my special little girl getting lost in the light. 

She sat up and began to pound the faucet so I ran the water for, quickly brushed her teeth, put on her pajamas and passed her off to my husband who had just finished cleaning up after dinner.

He is still trying to get her to sleep, granted I haven't heard her scream for a while. 

I hope she was just tired and tomorrow she will return to her happy self but for right now I'm going to be selfish and say I'm tired. I'm so very tired. 

The Answer to Life, the Universe, and Everything.

There’s one thing about having a special needs child that doesn’t really occur to you when you first find out about their diagnosis. Of course you morn for the child you expected to have but ultimately you change and adapt everything about your life to accommodate this little being. When your child grows up and still retains that lower level of cognition, what do you do?

Sure they still like to go to playgrounds, libraries and enjoy them to the extent that they can but what of the other children? Clearly the older that special needs children get, the more obvious it is to others that they are special or there is something wrong which makes the reactions of the norms more blatant and obvious.

We took our daughter to the library the other day. She loves it. There’s one particular spot in the storytime area she particularly loves. A muted eggplant ceiling with columns covered in colorful mosaic tile, a circular seating area recessed a few steps into the ground with a long with a very bright Ikea-looking chandelier makes for Evie heaven.  She shows this love and enjoyment by standing in place, stomping her feet while pumping her hands up and down while loudly exclaiming, “Aaahhheeeeehhaaaa“ and other variations.

 Naturally the other children in the area stopped immediately and stared. I know I should have asked them if they have any questions but I can’t trust myself to sound outright rude and I’d rather not emotionally scar children I don’t know over being curious. Instead I waited for their parents nearby to say something. Anything as did my husband when he overheard a child ask their parent repeatedly, “Why doesn’t that girl over there talk? What’s wrong with her?”

A similar thing happened this week which prompted this post. Evie went to sit down in her class and when she started her usual greeting of “Aaaa-eeehee eh-eh aheh,” the other children in her class shifted and even moved away from her. Of course, Evie being the princess that she is didn’t notice and continued to sit and be in her happy little world.  But my husband did, he told me about it and I soon forgot.  But later, he turned to me and said, “I keep thinking about it… but at least Evie doesn’t notice.”

It’s true you know. Why do we protect our kids so much, especially severely disabled ones? As parents I think it’s more to protect ourselves and the idea there really isn't much we can do about how others act towards our children. I have no doubt that my daughter has a sense of self-awareness on some cognitive level. She understands dangerous situations, she knows who her family is, she gives me more kisses when I’ve been gone. She understands who to go to when she needs something and understands if she runs by me with a lidless milk jug, I will immediately get up and run after her. It’s definitely something you don’t prepare for, how you are going to feel about certain situations not necessarily your child.

The older I get the more I feel that the question, THE question is not the ultimate answer to life, the universe, and everything (brownie points if you thought 42), but it is how can we teach sincere empathy to our children?  Can it be taught? I think about how I was as a kid and I probably would have done the same to be honest. I would have told my parents I saw some strange girl and they, at least my mom, would have guilt tripped me into being nice so the next time I saw them, I would sit closer. Yes as teachers and parents we can talk and even show through our actions how to be accepting but what happens when you’re not there? I’ve had parents come up to me and tell me how much their children enjoy being around Evie, perhaps more so at times when adults and teachers are around. I don’t doubt as Evie and her normal peers get older there will be more staring and unintentional musical chairs and I suppose as much as I would like her to be more cognitively aware, I fear it.

 So what can parents of normal children do? If you see your child staring or if your child asks a question like “Why does that person walk funny?” or “Why doesn’t’ that girl talk?”Answer it. Even if they answer is “I don’t know,” it’s okay. Children love it when we admit we don’t know something.  I’d like to think more often than not my brothers and sisters in the special needs parental universe would welcome a parent who came up and politely asked about their child. They want you to ask. They want you to know what’s wrong with your child so you can teach your own. This may not be the case with parents of younger children but I tell you if they have a severely disabled child, by the time that child is school age, those parents have heard possibly every offensive comment under the sun that a simple, “What’s wrong with your kid?" wont phase them. Then the normal child would see that we should not be afraid of peers who are different and know that it’s okay to ask questions. 

Crepes

Evie was due. I should have known tonight would be it. A family crisis that occurred earlier last week was finally subsiding, the other kids were getting along, and I was looking forward to a night of just one homework assignment and maybe sneak in a bit of knitting before starting my own crazy week tomorrow.

Her teacher told me Evie had a day full of "mood swings." She'd be smiling one minute, the next crying and upset. As she had a runny nose for the past couple of days she was going to call me but decided against it.

(Last time Evie acted like this, she perked up and was perfectly fine after I picked her up early.)

Knowing that she wasn't feeling well, I prepared for an afternoon of Evie watching tv while I worked on a few things that had to get done. Two minutes in, she screams. Not just a wimper but a full on wail.

"You don't like this episode? Okay I'll change it."

Start another... then WAIIIIIIILLLLL!!!!!

"Evie if you keep screaming I'm going to turn off the tv."

Few minutes later WAIIIILLLLL!!!!! I turn off the TV. She somehow manages to cry even harder. After about thirty minutes I cave.

"Fine. You win."

Screams continue and I choose to ignore her after making sure she wasn't wet, hungry, or had some massive thorn somewhere.

(I honestly wish I could record her crying for you. I did it once but thought against it as it truly sounds as though she is being tortured.)

Cue older kids trying to help her to no avail then choose to make even more noise. Not normal kid noises but sit in a chair and obnoxiously scoot across the floor noise. Making noise for the sake of making noise. Somehow humming the exact tune that will cause your other sibling to scream, "MMMOOOOOOMMM!!!!!!"

I breathe. Just make crepes. That's all you have to do right now, is make crepes. I tell myself. They're cheap, easy and Evie loves them. Eight crepes later, she seems to be full but starts mooching off her siblings. She'll see them eat, walk over, stand there. Get closer, stand there expectantly like some small bird only her mouth isn't open.

"Don't give her any!" I tell my other children as an image of a twenty-something Evie doing the same thing crosses my mind while I tell myself after eight crepes she's full.

By this time Evie realizes crepes are still coming out of the kitchen and decides to personally tell me she wants more by yanking on my arm while I flip.
"You've had enough" and I scootch her out in the living room. She comes back. Seeing where this is headed I move our kitchen table at an angle, a feeble attempt to keep her out while I cook. It works for a while until her brother thinks it's okay to let her in. Frustrated I tell him to make his own while I get Evie cleaned up. He's only too happy to oblige since I am very possessive cook.

While getting Evie into the tub I feel something rather warm close to my back. I turn around only to see my boy standing there in the bathroom... with the hot skillet.

"Do I flip it now?"

He had already done this once before and in fact took it upon himself to frolic through the house with the skillet, trying to help me out by flipping it but wanting it to be perfect needed my approval. We had the "hot skillets don't leave the kitchen stove talk", why is he... ugh!!!

"What did I tell you?!?!"

I'll spare you the details of the you didn't tell me/I did tell you conversation/argument we had.

At any rate, Evie's asleep and I'm winding myself down. It's nights like these that I can understand where those parents come from that do horrible things to their children. Seriously. There's a certain level of stress that comes from not only having an autistic child, but having one that has absolutely no way to have two way communication. If she was normal, I could have very easily asked her what's wrong, fixed it to the best of my ability and be on with it. But instead I play a guessing game while an almost seven-year-old screams at the top of their lungs all evening, meanwhile there are other kids who, through their own individual ways, vie for attention.

However, I knew there would be an end to this. I knew that if I could only make it to 6:45, she could have her medicine and hopefully sleep off whatever it is she needs to sleep off. After 7 I lay down with her and she grabbed my hand. She loves to have her hands rubbed and held. It was during this time I congratulated myself for surviving another night and began to reflect on how grateful I am.

1. Nights like this used to be constant, at least a few times per week.
2. Evie loves to snuggle. Some parents of autistic kiddos don't have that luxury.
3. Evie has no other medical problems.
4. She didn't discover the open second story bedroom window that I forgot to close


I think ultimately what got me upset is yeah, Evie is different but we're used to that and that's our normal so when nights like this come up I'm reminded of the unknown; of where she'll live in 50 years, who she'll live with, will she ever be potty trained, will she consistently eat with a fork? Although those worries are valid, over time I've been able to put them way back in the deep recesses of my mind. After all, that's how parents like me are able to function.

Siblings

I have been meaning to do a post addressing the siblings of autistic kiddos for quite some time but I already know this post will not be the one I had originally intended to write.

Being the youngest of six children, I pretty much had my mother to myself growing up. Although she worked full time,after work we would often go out to eat somewhere, just me and her. My father could never find work where we lived and he was gone to what I thought were exotic locations at the time (ie. Wyoming) and I didn't see him very much until I was older. With the closest sibling six years older than I am, it's safe to say I was a spoiled kid and had all the attention I ever needed. I can't imagine what a child would feel if their mom worked, went to school and had another child that needed near constant one to one supervision, not to mention other siblings close in age to contend with.

Although he is amazing with his younger sister, my son acts out towards his older ones quite a bit and multiple times per day does why-on-earth-would-you-do-that things to get attention. My favorite a couple weeks ago was dumping the last bit of milk I was saving for his sisters nightime cup only to claim the carton had been empty all along. My middle daughter is probably the smartest kid I know. Seriously. She's going into a "gifted" program this fall and I often find copies of Shakespeare and various selections of 19th century literature down in her bathroom that were taken from my bookshelf. Because she's so smart  she debates. She could be completely wrong about something but will not let it drop and will argue to the death. I tell her she'll make an amazing lawyer. My oldest... she's battling something head-on that usually isn't addressed until adulthood and most I know with it have a very difficult time even acknowledging it. Many also tragically succumb to it. Here is one of my babies that I wish I could do everything I could to switch places with but can't. I can only sit on the sidelines and hope there may be a chance for me to alleviate any pain felt.

Almost two weeks ago, I recognized there needed to be some change at home. I knew my kids needed more of my attention and I knew that I needed to actively charge my soul as I was utterly exhausted. After some thought I came up with this list.

(I'll spare you the trouble of trying to decipher my handwriting)
"Key to sanity and renewal?"
1. Pray/mediate. 30 day challenge?
2. Write (journal 10 min)
3. It's okay to have a messy house
4. Move all unnecessary furniture out of room
5. Let kids do more
6. Keep an Evie sleep journal/activity log
7. Make sleep routine (starting at 2000)
    i. walk around block
   ii. bath
   iii. medicine
   iv. teeth brushed/lotion pjs
   v. story
   vi. lights out in own bed with music
      (Tell Joe about schedule)
8. Do one thing the kids want to do

Can you guess how many days I followed this?

Same day I wrote this we had a family emergency I wish no family has to go through. So yeah, none. The list continues to stand vigil on the front of the fridge.

Last week our replacement sitter gave notice she could no longer help us. Not knowing this beforehand or any hint it was coming, I signed up for extra shifts. On one hand it's a good thing as due to the emergency, I had to cancel five shifts. On the other hand a bad thing since that leaves a gap from when I go to work and when my husband comes home, a way for me to travel an hour to take an exam without children, and try to figure out how I can take one child to an appointment that specifically states to leave other children at home.  I risk losing my job if I cancel any more shifts anytime soon. With things between my other children either being calm one minute to fireworks the next, they can't be home alone. Only one person has answered my ad for a replacement and I'm getting the feeling it wont work.

Today I've been thinking a lot about my role as their mother.* If you grew up in my religious culture, you'd know that mothers are responsible for nurturing and most of the emotional support and stability children need. How does my role as their mother rate when I have so much on my plate?

A few weeks ago in church, our lesson was on womanhood or something to that nature. A sister made a comment about how grateful she was that she chose to be a stay at home mom and be there for her children. How frustrated she was with a family member that he feels she missed out on educational opportunities because she chose to be a stay-at-home mom and how women in general need to be there more for their children.

I spoke up. Honestly I was going to make a comment anyway, my hand going up the same time as this other woman she just happened to be picked first. I wont repeat what I said. I'd like to think I was as diplomatic as possible, speaking on the importance of getting an education to help support the family financially.  What I didn't say was not every woman has that chose to stay home.

My husband, bless his heart, never went to college. He had an amazing union job in Seattle that paid well and had extraordinary health and dental. We move here to a job where he still has decent benefits but makes $7 per hour less. He's a hard worker, gets overtime when he can and has often lamented not going to college while he was making the money he did.

Every mothering instinct I have right now is telling me to quit my job. My children need me. I know they do. I know without a doubt in my mind things would be better if I stayed home... But I did the math. On one salary we would pay rent and maybe three monthly bills leaving car insurance, car payment, my overinflated university tuition, and Evie's tuition for her school- the reason we moved here in the first place, unpaid. (Not to mention animal food, people food, gas, car maintenance, clothes, medicines, co-pays... you get the idea).

Lately I've been thinking of one of my best friends whom I miss terribly. She's an amazing mom. Having five kids in four years (set of twins) would be enough to drive any woman crazy. Not her. (At least whenever I saw her ;) I've known her for almost nine years now and to this day she is the most giving and selfless person I know. We have the type of friendship where you could just walk into each others house unannounced, dirty dishes in sink, Lord knows what in the bathroom and you wouldn't blink an eye. I could vent and talk with her about anything anytime and know I wasn't being judged or the things I was saying, thought out or not, weren't being misconstrued in any way.

I'll admit, needing someone to watch the kids while I go to followup appointments or have unexpected needs most likely made me think of her. I  There were a lot of times, especially when Evie was first diagnosed with autism, that I needed someone to help. Evie had genetic appointments, neurology appointments, cardiology appointments, occupational therapy, speech therapy and she was always there if we couldn't find someone. I knew I could ask her for help and she wouldn't hesitate. Our other children would play and literally run amok together. The type of relationship I have with her only comes over time and a chance meeting. She also had a great way of reassuring  you, telling you things will be okay.

Like I said, this wasn't going to be like the post I intended to write.

Side note: I googled "helps for siblings of autistic children" and saw a Family Support Tool Kit link from the Autism Speaks foundation. "Oh neat!" I go to click and find this blip under the "A Siblings Guide to Autism" description,

The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. 


Funny.



*Complete and utter generalization. Not looking for any gender role argument

One Year Later...

A year ago after driving three and a half hours for a job interview only to find out the interviewer completely forgot about me and without so much as a phone call was told the position had already been filled. Irritated and angry, I realized another position I had barely applied for the day before was only a couple miles away and thought to followup in person. On the way I saw this:

It may not look like much, but after 18 months of living in Idaho I thought, "They're so green!" and really felt like I was coming home.

I interviewed on the spot and a couple hours out of town I was told I have a new job but had to start in two weeks which didn't leave a lot of time to save up. Fortunately we already had a bit, just enough for a deposit, first months, and a uhaul. The kids and I would move ahead leaving my husband behind to await a transfer to a plant 15 minutes away. All would be good.

I was wrong. My husband never did get that transfer and after a month of being single mom in a new area, placing the psyche of my oldest daughter at risk, and receiving the run around about a transfer we felt it best if he just quit and move. His medical benefits ran out so I had to take on a permanent position at work causing a $5 pay cut so we could have benefits. With four children, one special needs, you need insurance and even with my pay cut we didn't qualify for medicaid since my husband willingly quit his job; regardless if it was best for our family and his commute time at that point was just over three hours.

After a few months, he was rehired at the local plant but no longer qualified as a rehire as it had been too long. He was a new employee and stripped of his pay increase, seniority and sick leave.

In Washington, we both made good money. Four years later I have yet to make the amount of money I did when I started out as a new nurse in Seattle. Cost of living was high but you had options. In Idaho, we both had jobs that paid a decent wage for the area. Cost of living was low, were able to start paying off credit but our older children suffered from isolation and we couldn't imagine being comfortable having our autistic child in their public school. In Utah, cost of living is high. Sure taxes may be cheaper but gas, clothing, supplies are the same as in Washington and you don't have the same options. Back in WA we were frequent flyers at Fred Meyer. We received rewards points that would translate into gas savings and even store credit once a quarter. My friend posted this earlier this week:

See that? Eighty cents off per gallon all because she shops at FM. Unfortunately the closest one to me is just over 200 miles leaving one stop savings/shopping options very limited, surprising as I live in what has arguably the greatest concentration of families in America.  Lately I've found myself asking people at work, people I know make less than I do how they survive on one income as many wives do stay at home. The answer? A shrug. It just works. But everything here seems to be more complicated as well. Take registering your car for example. The inspection is not simply a double check the VIN number inspection. Your vehicle has to pass a ten point inspection test just to be licensed and registered. So say for example your car needs new breaks, windshield wipers, tail light, and has a crack in the windshield, you have to get them all fixed before registration can happen. There is no contingency plan you either get it all done or you're out of luck. (Funnily enough next time you're in Utah and see an out of state licence plate that doesn't belong to a college student, count how many tabs are expired.)

This past year I found myself really thinking more negatively than I had for quite sometime. My husband and I both had the feeling that we had to move when we did to ensure Evie had the best opportunities in the safest environment possible. We had this blind faith, if you will, that things will work out. So why was/is it so hard?

I don't know. I wish I did. I wish I had some kind of infinite vision of what lies ahead to know that things will work out. I did find out the more I despaired the less time I had set aside for personal prayer/meditation. Instead of thinking of all the things that I missed in Washington, (family, moss, Fred Meyer) I started to t list the things I'm grateful for such as:

Evies school. I can't imagine her being anywhere else. For the first time ever, her IEP meetings were positive. They know how to reach her so that she made most of her goals this year. Although her communication is still lacking she's been able to do things I never thought possible. Help dress herself, ride a scooter with assistance, go on a balance beam, go pick something up shes thrown. I wish all autism parents could be this lucky.

Frontrunner. I love the transit system they have here. I'm grateful to be close to mass transit so I can teach my kids a valuable skill they will undoubtedly utilize when they're older.

Watching the progress of the Provo City Center Temple. For me, our temples are the one of the few places I can find comfort and peace and it's been so exciting to see how far they've come to transform a burned out historical building into one of them.

A great person to watch our kids. She is simply amazing and I'm so grateful for the little things she does for our children when she watches them. Whether it's how she recognizes their birthdays or tries to find ways for the older ones to get along, she's just... amazing. (BTW: This isn't her and these aren't my kids.)

Great music scene. Provo, who knew? But in all reality I'm grateful my daughters have local venues to go to and even go into SLC on occasion to experience live music and have that outlet.

Our church community. We happened to move into a community that has at least four other autistic children just in the immediate area. Despite Evie's echoing screams when she goes in, I've never felt unwelcome. Even when a gentleman sitting in front of us after a meeting turned and asked,"Whats wrong with your kid?" I didn't feel irritated. He asked with a sense of honesty and openness that I appreciated and I tried to answer likewise. On another occasion outside of church I had a member come up to me, tattoos showing and all, introduce herself and ask me how I was. And she meant it. We made small talk but I really appreciated her willingness to say hi outside of the church environment. And I'm grateful for the assistant Evie has during her classes. She is also an amazing woman who goes above and beyond her calling to help Evie and I am so very grateful for that. 

I could go on and on and although I miss my friends and family in both Washington and Idaho, for better or worse, Utah is not at all what I expected. Through this experience so far I've learned to be more patient and develop more gratitude. With my husband and I both employed and despite having to pay out of pocket for University books and tuition, here's to a year filled with more positive thoughts and new experiences, so long as I remain grateful. 

Community service #2

This week we went to Wheeler Farms, a 75 acre historical farm that aims to preserve the traditions of old farming from the late 19th century. There are many kinds of farm animals and outbuildings to explore along with guided tours and demonstrations of blacksmithing and yarn spinning from wool shorn from sheep on site.

This field trip was different in that we were split into two groups for guided tours. It was interesting to watch the tour guides at first be very animated, directing questions and comments towards all the kids but as soon as they figured out two of our group (my daughter included) wasn't very interactive with what was being said, their attention and questions went to the younger brother of a student. Like any "typical" three year old he showed the excitement responsiveness that one would expect from any child. At one point during the "smithy" presentation the other child in our group who I think is mostly non verbal but around ten dropped to the ground and started screaming. Like a pro, his mom took care of him and distracted him by offering to push the stroller that had his little brother in it.

After about a half hour we went on a wagon ride with a grandmother and her two-year-old who just happened to be visiting the farm that day. She asked if the kids went to a special school and we were able to talk briefly about it. It was refreshing as she didn't add the "my friends cousins sisters best friends daughter/son has autism" comment. I know people mean well but one thing is for certain, no two autistic children are the same. I don't feel I can relate on a personal level with anyone that has an autistic child if they can talk. Not having a solid means of communication I feel is the biggest hinderance to any child. You don't know why they're having a bad day, you don't know if someone has done something to them or neglected them which is the major reason why we moved out of state so she can go to this school.

Community Service

My brief respite from nursing classes currently consists of a semester of core education courses this summer, including an American Institutions requiring 20 hours of some type of community service. What better way to help satisfy this requirement by volunteering at Evies school?

As expected, being a chaperone on a field trip for an autistic school is different. There are no school buses, the staff to student ratio is excellent, and quite a few times, not all of the students attend.

As she hasn't found a solid way to communicate, Evie is in what's considered the low functioning *classroom so it's very easy to tell when there are other children, especially girls absent. The other girl in her class wasn't there at the field trip which was disappointing for me because it's much easier to compare her to my own child. Not to see whose child is better or more advanced but I've become fascinated by other girls with autism since I don't see them as often and it's easier for me to relate to their parents. Having autistic girls bring on a whole other slew of parental worries**.

The field trip was to the BYU duck pond to float boats they decorated down a small stream, followed by a trip to a small playground nearby. I'm not sure if it's because it's more cost effective or there's a greater chance of meltdowns, students are transported by private vehicle either by their own volunteering parents or staff members. Evie was happy to go on a car ride, when the weather warms up she loves it when I crack open a window and has her hand out in the breeze.

Of course her feelings of contentment quickly ended when we got to the pond...

For whatever reason she seems to cycle in adaptability with new surroundings. One month, she goes with the flow no problem. Another month she screams bloody murder which is what she seems to be doing now. The peacefulness of the wooded area was broken by screams of my daughter, oblivious to the charms of little ducklings clamoring below for old bread. A well-put together mom nearby with her equally well-put together young girls and their perfect pinterest hair glared a bit, her well-put together picnic being interrupted by some screaming kid who appears to be old enough to know better. I resisted all temptation to chuck old bread at her, knowing she'd feel differently if she was lucky enough to know someone like my child.

Through the magical powers of Ringo Starr on my phone, Evie eventually settled and ended up having a great day. We walked up above the pond where the stream was and let me help her put her little blue boat in the water. She later led me to a bench to sit until it was time to go to the park.

This was when the meltdowns began. Two other children became upset they had to leave the wooded area, not understanding we were going to a place to have snacks, swing, and slide. It was interesting though to watch the staff members interact with them. They understood you can't simply reason with them. They can merely explain to the best of their ability to help transition, despite being kicked or bit. Admittedly, I was happy it wasn't my kid and that Evie despite, being non-verbal, doesn't hit or kick (remind me next time she's screaming like mandrake.) Watching them interact with the children, all of them, reaffirmed how lucky we are to have our daughter at a school like this.

Evie had a blast at the park. She loves play structures and was running from bench to bench, pounding on the table for sensory stimulation. Even taking my hand over to join her. All and all it was a great experience and I'm looking forward to volunteering more.

*I still struggle to classify her as low-functioning but that's for a later post.
** another topic for a future blog post.

Faith

In the final few weeks of this semester I learned about spinal cord injuries: How they’re treated… The difference  flexion-rotation vs an extension rotation injury...  What autonomic and somatic function is lost after breaks at specific points in the vertebral column…

A break at L-3, one may still have upper leg function but still lose control over leg and foot. A break in the thoracic region you still may have full control of upper body but poor trunk balance.  A break at C-5, you are quadriplegic but still have control over your diaphragm. Injury above C-3 causes respiratory distress leading to arrest and death if you’re not put on a ventilator. Cervical spine injuries are most common among children. (WSU NRSG 2500 Unit 13 powerpoint slide 8 :/ )

This is a picture of Evies second story window. 

I was doing dishes earlier tonight when I realized I had not heard her for a few minutes. Typically, she would be in our room scaling up an IKEA cubby filled with my husbands clothes, hanging on the closet rod waiting for us to come get her (only after she pushes over the floor lamp and throws everything on a chest of drawers off- we've learned to not bother with pictures anymore) but we've removed the knob of the door so you can only open it by replacing the knob back on the... nub? 

I went to her room to find my child halfway out of the window, that window above. A second story window. She had managed to push out just enough screen to put her head and trunk out, dangling down. She wasn't crying, just barely moving. I ran to grab her, yelling at her, "NO! That's not safe!" I pull her out (by this time she's screaming), do my best to pull the screen in and slam the window shut all with a strange mix of that blurb of medical nonsense with Tears In Heaven running through my head. Funny how time seems to stop during an emergency.

My daughter is a now one to one; a "patient" needing constant supervision to protect themselves or others.  Unless I want her to be a zombie in front of the tv she is now to the point where she needs someone constantly watching her. As I sit here writing I'm amazed at how long I've gone without thinking what the future will hold for her. It used to be a constant thought but after I moved into the acceptance stage of having a special needs child, it's just not something you think about or try to dwell on too much.  Having three older siblings, I would hope they would take turns after my husband and I are gone. But how can they? How can anyone? 

I briefly worked at a residential care facility, basically a place that Evie could end up in. There were about 50 residents and five staff, three or four one to ones. How does that work? It doesn't. It was exactly the place I never want my sweet girl to end up. As crazy as it was, I love those guys. Even though I haven't seen them for a couple months and may never see them, I think about them often because they are someones child. They came from families that, for whatever reason, could no longer take care of them or keep them safe.  

I have done full on rescue breathing CPR on my sweet girl three times in her short life and tonight was the scariest thing I've seen because I knew without a doubt in my mind what would have happened had I not checked in on her. Her spine would have broken and my girl who loves to climb and swing would be bound to a chair or even dead. 

It's funny because up to that point in my day, I had begun to really stress over funding for school these upcoming semesters. I have applied to a couple scholarships and still wont know for a while. Almost a year ago, my husband and I felt we should move to provide the best possible opportunity for Evie to learn to be as functional as possible. Even though we were able to pay our own bills, pay off past debts, and were on track to possibly qualifying for a home loan after a year, we both felt strongly we had to move before she started kindergarten that fall. Unlike our move from Washington to Idaho, we had no savings and he didn't have a job. But still, we knew if we had faith things would be taken care of.

To say our situation this past year has been rough is an understatement. My husband was unable to get hired on with the same company which would have been same amount of pay. He was finally hired, however instead of having transfer status, he lost  his seniority and started at new hire pay. I had to take a full time position sacrificing pay for benefits. It was at this time Evie was hospitalized and we acquired more debt in the form of unpaid medical bills thanks to a high deductible. 

Faith is funny thing. At least for me. I remember the days when I first had my faith and I swear every prayer was promptly answered. I remember being an overwhelmed single mom, praying on my knees begging for relief or someone to talk to when the phone rang. I remember unexpected checks in the mail coming from random places; rebate for something I forgot about or accidentally overpaying for something I was sure was correct. I remember knowing, without a doubt, my Father in Heaven was there for me and having the intense, strong trust of believing my life was in His hands and He would take care of me no matter what.

It seems these past few months I've been quick to doubt if maybe He just is, I don't know, too busy. After all, my life isn't so bad. Both cars are working. We're not in the hospital. No one has died. We have a roof over our heads (for now anyway.) I've just had a hard time with not KNOWING without a doubt in my mind things will we okay and I've missed the peace that comes with that knowledge.

But for whatever reason, I stopped washing dishes to check on Evie after only seeing her moments before. I didn't hear a voice tell me. I didn't think I heard her only to turn and see her gone. I just knew to check and as I sat, stroking her little hand while she fell asleep tonight I thought of what could have happened had we ignored the prompting to move here.

She would have been bused across town to go to a typical school to be one of the special ed kids. The school wouldn't have the alarmed doors. The school would undoubtedly not have the low ratios her current school does... and I remembered a room upstairs on the second story. My oldest daughter had accidentally pushed the screen out. Perhaps Evie would have fallen out of there at some point. 

I still don't have a strong conviction things will be taken care of. However, I know without a doubt that my mind that  Father in Heaven is watching over us, especially Evie. 

Colic at 6 years.

That is the best I can describe it. The formidable stage between precious newborn and sweet baby where an otherwise perfect being in all aspects... screams. From my experience, colic wasn't just slight whimpering it was all-out-mandrake-like inconsolable shrieks of which one could not fathom the source of. No matter what you did, whether it be vacuuming or putting the poor thing on a running dryer, the screams came.  "Is there a demon in my baby?" "Damien, is that you?" A colic-y baby is the best way I can describe my child and her screaming only the source is not a newborn diaphragm, lungs, or pharynx...

For the past couple of weeks, perhaps even a month, she has started to scream bloody murder.

She screams when I drop her off at school, screams when we go to church, screams at the store; gone for now is my sweet child that I could formally boast "yeah she doesn't speak but she has no behavior issues whatsoever."

Is it a phase? Is it circumstantial? I think it's a little of both. This morning for instance, she's fine driving to school, whimpers a bit, but the second I pull into her school? Screams. This afternoon, I let her watch one cartoon, I turn it off wail. Not wail, SCREAM! I explain to her "okay you can watch one more while I make dinner then you're all done okay?" She stops crying. I give her a five minute warning, then one minute, then 'click.' Three... two... one... SCREAM!!!

I wanted to turn it back on, I did. I knew if I did she would stop and all would be right but how is that helping her? How is that helping her development to reinforce that 1. If I scream I get what I want? and 2. Well, I can do what I want. So I kept it off.  From 1810 to 1950 she screamed. Red in the face, blotchy crocodile tears. I do have to acknowledge she did give me some respite around 1900 which was kind as someone came by the house but the second they left... SCREAM!!!!!!!  And of course she would do this when its my husbands night rotation at work...

 At the forty minute mark, I attempted to record her screams just because I'm a sharing, caring person. Unfortunately they sounded quite muffled as I was covering the camera with my finger. (I just remembered I have a voice memo app on my phone... duh.)  It was so bad that it honestly sounded as though I was personally muffling her with a pillow-which for the record I would never, ever do. The greatest skill a parent can have is knowing when to walk away and give yourself a break, even if it is just to run out to the farthest corner of your backyard for a moment.

At the start I thought,  "What would I do if she was normal? Would I give in to a nuclear grade tantrum?" Never! Instead I tried to find a happy mental place while figuring this out. I know it's her way to communicate. I knew she wasn't physically hurt, so what to do? With my other kids, I would tell them to go to their room to calm down. I walked her back to my room (she prefers it) and told her you need to calm down it's not your turn. And sat with her she continued to walk out of the room. So I put her back (repeat for 20 minutes). I went to go check on dinner so I left her (with the door ajar so she could open it) and as expected she came out screaming walking up to the TV then something miraculous happened, she stopped!

And what would this super mom do to any other child that calmed down? Give positive reinforcement! I ran over and gave her a hug and said I was so proud she calmed herself down. What did she do? SCREAM!!!!!!!!!

 She eventually calmed herself down and went to bed. In hindsight I should have given in. I was so focused on her and trying to find a way for her to communicate or find some kind of alternate activity I forgot that in less than 48 hours, I have two comprehensive final exams.

That's the thing about autism. There is no happy ending. Autism is a spectrum, a blanket diagnosis for thousands of individuals with varying degrees of abilities and impairments. Unlike other disorders, there is no clear diagnosis or prognosis. What may work for one kid, may just do the opposite in another. And as aware as I know she is of people and things around her, so long as she has no real set way to communicate or express herself, she will always be considered low functioning and that breaks this tough stubborn Dane.

Its times like these I try to focus on how far she's come. She's willing to touch and explore the backyard more... She helps get dressed a bit... She's doing better with feeding herself... She stopped hitting the unsecured flatscreen when she wanted tv because we redirected her... She doesn't bite... She has no feeding issues...She doesn't run off (anymore.) I used to think of the wonderful Carly Fleishmann. A non-verbal autistic child who at the age of eleven began out of the blue use a keyboard to communicate. Now she's written a book, attends college, and last I checked is actively trying to get herself on Oprah.

But then again, she had the benefit of multiple therapists coming to her home in addition to going to a special school. There's no way we can provide that kind of intervention. The best we could do was become more in debt by moving 300 miles so she could be in the safest school possible when she started her kindergarten year, giving what we thought would be the best start instead of staying in a school district with a sub-par special education program.

I wish I had some type of conclusion to this entry, a great paragraph filled with hope and optimism that ties everything together but I don't- and I probably wont for a very long time.

Although it's spring break I apparently have 226 pages of a novel to read this week for English. Not bad right? If you know me at all you know I tend to run away from novels with the Oprah seal of approval like the plague but apparently my English teacher feels otherwise. But hey, at least it's not about something like intracranial regulation.

The Poisonwood Bible  is set in 1959 and is about a Southern Baptist preacher that goes on a mission to the Congo with his wife and four girls, one of which, Adah Price, is disabled and non-verbal. The doctors didn't give her the greatest prognosis, basically saying she will always have issues and problems in her life. 

So far the author pulls a GRR Martin (my favorite pervy author) with each chapter in the first person narrative. While reading the following passage of Miss Adah I naturally thought of my girl and although I could go on afterwards how often we are quick to judge or mistakenly assume children like my daughter will not ever be able to have a higher quality of life, I wont. 

"I am prone to let the doctors' prophecy rest and keep my thoughts to myself. Silence has many advantages. When you do not speak, other people presume you to be deaf or feeble-minded and promptly make a show of their own limitations. Only occasionally do I find I have to break my peace: shout  or be lost in the shuffle... 

It is true I do not speak as well as I can think. But that is true of most people, as nearly as I can tell."

To medicate or not to medicate?

To say we're fortunate our daughter has virtually no behavior issues doesn't even begin to describe the deep-felt and intense gratitude I feel whenever I look at her. We have a non-verbal autistic six-year-old that doesn't bang her head, thrash about, or pull her hair. I once had her evaluated for behavioral therapy and was told that "I've never seen a non-verbal child act so calm." She does bite at times however, it tends to be completely circumstantial; mostly when I'm busy cooking and her previous attempts at tapping my arm or pulling my shirt did not give her my immediate and undivided attention.

So why medicate? Since last fall, she has woken up on occasion between the hours of 0100 and 0200 in a fabulous mood, stomping, giggling laughing... we call it her playtime with her "friends". As cute as it is, this playtime is very inconvenient if you have to work in the morning or, more recently for me, have clinicals and have to be a somewhat functional human being.  On these occasions, we have been crushing melatonin into a sippy cup and she'll fall back to sleep... eventually only to wake up again between 0600 and 0700 ready to start the day.

This system worked fairly well however as the months have passed these play dates have increased in frequency to the point for the past two weeks neither my husband or I have had four hours of sleep in a row. That's fourteen nights of play dates and endless stomping with giggling. Only now she has added a midnight snack to her routine.

She'll stomp into the kitchen and literally forage for any food she can find. Rest assured we feed her well, she just happened to inherit genes on both sides that love to eat. On more than one occasion I have woken up drenched in milk from an open gallon she dropped on me. Her non-verbal way of saying, "Mom, get your lazy butt up and get me some milk!" Using an apron, we've made sure the side by side doors of the fridge are tied shut before we go to bed. Unfortunately this doesn't prevent her older brother from getting into the fridge for a midnight snack before she has her party. After 14 nights of this, a room smelling of sour milk, and waking up to jam, yes, a trail of jam smeared in my bed leading to a very sticky sleeping beauty, we felt it was time.

After listening to my concerns her doctor agreed we could all benefit from something to help her stay asleep, clonodine. Of course the psych nurse inside thought of all the patients I've given clonodine and start to future trip that this is where it begins. She'll have side effects requiring more meds. She'll never be able to sleep without it. But weighing the small chance of that with not having any sleep tonight before I have to get up at 0430 and be somewhat functional, not to mention how lack of sleep could be affecting her development... it was time. We started her on a half dose to see how she does and will increase to a full dose in three days if needed. I felt pretty good about it. Besides, I have quite a few friends who are parents to other autistic children or kiddos with ADHD and they swear by it.

Unfortunately right before she fell asleep she started screaming bloody murder. My husband swore her upper lip was swollen. I went in to asses and her breathing was fine, but her upper lip was very, very slightly swollen. So of course this RN student who should be delving into the wonderful world of ECG interpretation is finding her ability to focus greatly waning and is instead blogging, wishing she she could be home tomorrow morning to make sure her daughter is okay.

"Utah!? Really?"

Day by day, I have found myself becoming increasingly anxious over Evies impending enrollment in kindergarten next fall. Why? Aside from the borderline disturbing treatment of a special child while chaperoning my sons field trip I saw from a school district employee, there is something in having a non verbal child away from you for a lengthy period of time that can be unsettling; especially one as cute as Evie.
(I am not being biased, she actually is pretty darn cute.) I would like to say, however, that although I have mentioned more than once abuses that occur in special ed classroom, I am in no way saying they are all evil and public school is horrible for special needs children. I am just saying that between my husband and I, we just are not too comfortable with the setup they have in our current school district and feel, for Evie, there has to be something better out there for her.

In a perfect world, she would be able to attend the special needs program at my other childrens charter school which we absolutely love and we wouldn't have to leave my parents whom my children have truly enjoyed being around now that we're closer.  However, on two occasions from two different staff members, I was told that not only are the children in their program verbal, they are also high functioning. You mention your daughter is non verbal autistic, my only guess is it's assumed she has many issues- go figure. What I have observed about Evie is if she were verbal or at the very least have some constant method of communication, she would be much higher functioning with some sensory issues.

She has shown over and over that she does understand everything, her responsiveness to her name has greatly improved as well as her eye contact and ability to stop at the end of the driveway or wait by the car if we're going somewhere. (Traits I may mention that really only began to develop after I began to treat her more like a "normal" kid.) She has also begun to feed herself with a spoon- something I never thought she would ever do and bring important things to you, such as the remote control.

I really believe as parents to special needs children, despite what experts may tell you, you are the only ones that know your child enough to really know their prognosis. Evie, like other children, has the potential to do great  things but unlike other children, she requires the right key to truly unleash it which would be finding a method of communication that works for her.

I came across an article yesterday regarding the Mariposa School in North Carolina while reading articles about teaching autistic children how to sign. Children who were previously thought to be nonverbal through intensive therapy and a supportive environment began to communicate over a short period of time. This great program whose methods include signing everything, the floortime method, and 1:1 intensive ratios costs at least $5,000 per month. Being in North Carolina, I knew this was out of the question (not to mention the 5K tuition) but I wondering if there was anything remotely like it here.

Thanks to my dear friend google, I found this handy look up site for a state by state listing of autism schools. Big surprise, none in Idaho, but there are three, THREE in Northern Utah- little over three hours away. Fortunately my husbands company has a plant twenty minutes away from one of them, not to mention there are loads more on call job opportunities for myself. The school itself is fairly new and the program looks promising thanks to their sliding scale tuition. Does this mean we're off to Utah, homeland of my ancestors?

No but it gives alot to mull over, the first being my parents. One of the major reasons why we moved here was to be closer, enabling them to have a good relationship with my children that consisted more than a twice a year visit at best. I briefly mentioned the slight possibility of moving to my mother this morning, although she wasn't upset, she wasn't happy to say the least. However, if we were to have the good fortune of securing a loan we could easily purchase a six bedroom home for not much which would not only give everyone their own room, but leave a spare one for company. Even still, I would miss them terribly and my son would miss being able to tinker frequently in his grandpas workshop.

The second reason why we relocated was for school. My husband has been going to our local two year college to get prerqs out of the way but at one point would need to transfer to a university which does not exist here so in essence, we would have had to relocate. There are quite a few Universities in the N Utah region so that wouldn't be an issue.

Third, my other children. One could argue it wouldn't be fair to up and move for the second time in what would be a little over three years at that point just for the sake of a better situation for my youngest.  I ran it by my oldest who, for the record, is exited at the prospect of being near a big city with actual mass transit again. My other two children love their school but they're honestly always up for an adventure. My other children have truly always been good when it came to Evie.

My final hesitation would be the simple fact that it is Utah. Although being so close to the mountains is beautiful, I've always been very self conscious of the visible tattoos on my arms which tends to have  the more sheltered Mormons assume the worst of me, and when it's known that I'm a very eccentric liberal, Lord help me. However, I don't think it would be much different than living here in that respect. I feel that if it were a smaller town like the one I'm in and just as isolating, then it wouldn't work. To be honest, as much as I like the idea of a farm with horses and goats, I am a city girl at heart and having a metropolis (even if it is Salt Lake City) within an hours drive would bevery freeing

Here We Go Again

After a wait that has lasted all summer, Evie is going to finally have her vision checked tomorrow and here I sit, having massive flashbacks of hope, similar to her sedated hearing screen which inspired this bit of writing. I never would have thought that her vision was an issue, slightly impaired maybe but not horrible. Then I heard of this little girl who suffered developmental delays and was thought to be autistic. Turns out, she was just suffering from poor eyesight and has since become the youngest member of Mensa with an IQ of 135 after receiving the appropriate prescription for eyeglasses.

 I started to think about it and Evie does like to watch her Spongebob up close and if I am standing in a darkened hallway calling her name, she will look towards the sound of my voice but ultimately go the other way. However, if we go to a park she will immediately run to the play structure which leads me to believe she has some form of farsightedness. But again, I was searching for similar signs of deafness two years ago which brought me temporary comfort, thinking all my child needed was a cochlear implant.

Don't get me wrong, I am happy for little Emmelyn and her parents. I can't imagine the joy they must have felt to find out that not only all her daughter needed was some glasses, but that she has an insane IQ for a toddler. However it does give me that fateful sense of false hope, the second time, for tomorrow.

Extraordinary

Extraordinary-a word not to be taken lightly. In fact, I don't recall ever using it in my entire life and yet it is a word that popped into my mind earlier this evening after putting Evie to bed.

Two months ago my oldest daughter came to me and respectfully requested her own room. At fourteen, it had been 12 years since she had her own room and, for the most part, had been a very good roommate to her siblings. She reminded me that as she is going into high school she felt the need to have her own space to focus on her studies, not to mention, the twin bed she shared with Evie had become increasingly cramped over the past couple of years.

The next day she moved out of that room and traded with my six-year-old who for the record has never slept through the night. Despite the fact she was ecstatic to finally have her own room, this situation did not sit well with Evie.

For the most part,  Evie has never had any sleep issues or disturbances that commonly plague autistic children aside from hating her room for the simple fact going into it meant bedtime. She would instantly become uncomfortable no matter what time of day if she were brought there. And although she really had no bedtime routine at that point, she was fairly consistent to fall asleep with a cup after a few minutes. My oldest had never reported any crying through the night and if Evie had ever woken up, she would snuggle in with her sister and fall back to sleep. Her sister, being as caring as she is with Evie, would make any necessary adjustments in her sleeping position to accommodate Evies comfort even if it meant a very sore back in the morning. Her brother, however, was not so accommodating.

It was clear halfway through the first week this arrangement wasn't going to work. My son would commonly wake up shortly after Evie was put to bed or Evie would wake up screaming as he, being the older brother, was resistant to change his sleeping position as they both like to sleep sprawled across any surface space of the mattress. Initially I tried to set up a good routine for Evie consisting of a bath followed by one episode of Spongebob when I would braid her hair and make every attempt to brush her teeth. I would then "read" her a very short story with the hope the routine would make for an easier time falling asleep. It seemed to have the opposite effect as the time from me tucking her in to her falling asleep was increasing every night. It became common for her to wake up around 11pm and stay up until 3 or 4 in the morning multiple nights per week. It was clear this situation was not working.

I soon approached my oldest, intending to ask her to switch back to the old room with the promise of a bigger bed as it was clear, Evie missed her sister. But something occurred to me. Something I try very hard not to think of. The future.

I pictured a much older Evie in some group home, never sleeping because she didn't have her older sister to sleep with. No. This situation was going to work.

My son kept his things in with Evie and began to sleep in his other sisters room (I'll spare you the drama). I continued the routine, despite Evies protests by running the other direction whenever I said, "Time for a tub" and screaming while I read "Goodnight Moon." But sure enough, after a few weeks the screaming stopped and I began catching her quickly glancing at the pages while I read. Now I'm happy to report, she'll lay on her back and playfully hide in the covers while I read to her most nights. It has been two weeks since she woke up during the night, which brings me to earlier this evening.

Tomorrow my oldest will be visiting family for a few days. We told Evie this a few times over the past few days but of course, she being who she is, went about her days with a business as usual attitude until tonight. After her bath, she willingly went into her room and ran over to the bed when she looked at me briefly and patted the spot next to her. I ran over to her and sat down, surprised as usually after getting pajamas on she quickly bolts out of the room. Evie began to giggle. Seeing this, my other daughter (Evies former roommate) was on my laptop in the same room at the time stopped what she was doing to go play peek-a-boo with Evie in the blankets. When one of us would get up to leave, Evie would quickly take our hand, lead us back to the bed, walk over to the door, promptly close it and return to the bed to play some more. This continued for well over thirty minutes.

I honestly wish I had the words to describe Evie when she giggles and gets excited. Her whole face seems to light up as she gets the biggest grin, puts her hands together then pulls them apart and does this funky thing with her arms that isn't unlike a chicken flapping its wings, all with that contagious giggle which is usually followed up with a kiss and one of the very few sounds she makes, "ummmmm."

One major thing I have learned with having a child on the spectrum is you truly know what it is like to appreciate and find joy in the little things. I can't imagine ever with my other children getting excited because they willingly went into their room. That was never an issue with them. Tonight was a breakthrough in the sense that Evie knew her older sister was leaving and she willingly played in her room with us. And that is extraordinary.