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.