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.