Crisis living

Crisis living (Kristina's definition)- is when you feel like your entire day is spent "putting out fires" and at the end of the day you sit down (or fall over depending on your energy level) and stare at the wall for twenty minutes because you know as soon as you go to sleep it will start all over  again tomorrow morning.

I recognize that I spent a year of my life in this mode.  It was the spring of 2004 to the spring of 2005.  It was the most challenging year of my life.  I had been a "stay at home" mom for 3 years, had two of my own children (AnnaLisa 3, Andrew 1) as well as watching my sister's kids Isaiah 3 during the day and her girls after school (Sariah 9 and Rachel 7).  I was pregnant with my third kid and expecting in November.  

Now what was so hard about it?  I remember it slowly building.  At the time I still understood so little about what being a mom really is about that I felt that all I did a decent janitor could manage (changing stinky diapers, cooking, cleaning, etc).  To add to this (although I did not know it at the time) my oldest started her developmental regression.  It became startling at the beginning of summer when I stopped watching my sister's kids.  I noticed that AnnaLisa was not doing things she knew how to do.  She had virtually stopped talking (she had one phrase - Shut the door).  I have a very vivid memory of her standing in the kitchen repeating this phrase over and over to me.  I flashed to "Sixth Sense" to the kid who opened every cupboard door in the kitchen.  I am looking around and not a single door is open, the bedroom doors in the hallway are closed, I can't figure out what she wants and I am crying.  I finally open a door, just so I can close it for her.  Over the summer I had mentioned to my peditrician that I have concerns about her.  Pediatrician tells me to come back at three year check up (5 months) and she would look at it then. I remember thinking there are a lot of days between now and then.  Shortly after this I start having pre-term contractions (at 28 weeks), the nurses in the hospital start to recognize me because we went in so often.  Doctors put me to bed rest at 31 weeks.  My mom (thank heaven) comes and stays with us for a month to take care of my kids.  I finally hit 36 weeks, get off of bed rest and then don't have my baby until 40+ weeks (I actually broke down in the doctor's office on my due date when they told me to come back next week.  She decided to induce me that weekend).  But in the mean time, I finally get someone to listen to me about AnnaLisa and the local school district diagnosis her with autism (although they have no credentials to do so, so it is not "official").  I, totally naive to what autism is, say, "So what like in a year you re-evaluate her to see if she has learned what she needs to from this "special pre-school"?  The speech therapist gets this sad look on her face and says, "Oh, no it will be much longer than that".  [As a side note here, why didn't the speech therapist tell me this was a life long thing???!?]

Well, as if this was not enough, and it has only been six months so far, the baby comes a few weeks later.  I start reading about autism and all that can be involved with that, and I start to not only recognize my daughter in it, but also my 19 month old son.  At first I thought this book was loopy, but then I finally realize my kids are not "typical" kids.  While this relieves me (I seriously was doubting my own sanity and wondering why any mother would want to live like this and how any could be as happy as some of my friends were) I start to wonder what my children's lives are going to be like.  I wonder if my daughter will ever want a close, intimate relationship or if my son will ever stop slamming into people.  Being mom of my kids did not involve peek a boo, If you are happy and you know it, or "I love you, mom".  It involved kids that did not talk or look at me.  It meant me reading my kids moods and needs so that they did not have melt-downs.  I felt (and probably was) the comparable mommy version to a "battered housewife".  I felt no love or acceptance from my kids.  They did not try to make me smile and I had given up a while ago. When I kissed AnnaLisa she would always "rub it off" no matter how dry my lips were.  She never tried to kiss, hug, or anything to me.   

As I got a handle on what autism was and started taking a few classes to help me understand how to work with kids that have autism, I started seeing a different side of AnnaLisa.  She occasionally showed delight in things.  I occasionally saw her smile (she stopped smiling around age 6 months - I remember this because we thought that professional photographers sucked because they could never get her smiling and I had pictures of her smiling.  My apologies professional photographers).  I started seeing people being able to get her to do things (part of the class was a professional working with AnnaLisa to do basic activities with us watching via closed circuit TV).  As I started learning how to teach my kids and have success (I had not really been able to teach anything for more than a year to them) I realized it was awesome.  I wanted my kids to learn (and to some degree my job as mom was getting easier.  You have to realize I had two kids that were basically on a 16 month level and 4 month old at the time - I dressed everyone, diapered everyone, cut up everyone's food, etc).  I was thrilled when AnnaLisa started dressing herself (mind you MaggieMae, my typical developing child, is dressing a majority of herself at 20 months).  AnnaLisa was 4 before she ever told me that she loved me.

I had a calling in my church working with the 12 and 13 year old girls.  I finally came to the realization that I had to ask to be released (for those not LDS, you do not generally ask to be released from a calling.  In my life this was the only time I ever have).  It was difficult for me to request such a thing.  It took me about three months to finally accept this was what I needed to do.

The last thing that was the hardest of this year was my marriage.  I think to some extent Jeff was living in Crisis mode as well.  As we started learning about how to teach kids with autism, Jeff frustrated me more and more.  I would work on things with the kids and be real consistent with them all day, to have Jeff (unknowingly) come home from work and undo it.  I really came very frustrated with him.  Poor Jeff was still trying to come to grips with the whole diagnosis and what that really meant.  I was off fighting the war thinking he was right there beside me only to see him frustrating and undoing my work.  An added "perk" to this whole thing was that quite often kids with autism have sleep issues (their melatonin, a naturally occurring hormone in our bodies that helps us fall asleep, was insufficient to help them fall asleep).  So in addition to not being on the same page as far as our children go, my husband would not get to bed at night with me until well after 10:00 (We would put AnnaLisa to bed at 7:00, consistent nighttime routine, doing all the "right things" that parents are suppose to do for getting kids to go to sleep).  Well, a year of my husband laying down with my daughter all evening really wears on a marriage as well.  I remember at this time I started thinking about divorce.  I felt like he was just making my job harder and if that was going to be how it was, I'd prefer less interference.  I told this to a friend of mine, who wisely told me, "You are being selfish and are only looking at how this situation affects you.  It would be bad for your kids and you in the long run to get divorced".  It made me stop and really look at why I was thinking what I was, and realized that Jeff has been the best thing for me and my family.

Well, reality is that this post does not even due justice to the frustration I felt.  I hated living like that.  After about another 6 months I started to feel like life was manageable.  AnnaLisa and Andrew showed a lot of progress and were starting to learn and be able to communicate to me.  After about a year I started feeling good about our families' progress (we tackled it very aggressively and our kids just have had a lot of success).  Shortly after this we started noticing JJ's lack of progress.  But that is for another post.

I look back on this and think about what it was that helped me.  The main two things that helped me were that I was called as Gospel doctrine teacher and that I started to really learn about how to teach my children.  Being the Gospel doctrine teacher (Sunday school teacher for the adults in my church) in a way "forced me" to read the scriptures on a daily basis.  It helped me to turn to God in my struggles.  The other blessing that came to me was learning that while a lot of the techniques that you use to work with kids with autism are very similar to "basic good parenting techniques" that any individual could use, I had to learn a deeper level than most.   I have a friend who has a child with physical special needs.  She laughs when people use the work "consistent" around me, because she has seen me with my kids and knows that compared to what I do with my kids, consistent by most peoples standards is around 60% of what I consider consistent.  Maybe consistent will be a later blog point for me or not, but it is never optional in real life.

Now, 4 years later, I shutter to think of what life was like for me (and my family) back then.  When I have bad days, as we all seem to, I just remind myself that it is a day, not a year.  I am a bit more selfish than I was back then in the sense that I will not let myself get overwhelmed or overtired like that.  I recognize when I need a mommy time-out or a nap.  I try to always read my scriptures and pray (because I know these help to center me as well as keep me humble) daily.  I am a bit less selfish, I don't think about how this makes my life harder when I am faced with family struggles, I simply try to figure out the best way to support whatever needs to change, happen, etc.

I am thankful for trials, but I am also thankful for quiet times to reflect on past trials and appreciate what they taught you and hopefully, how I have grown.