My Autism Diary

I got a note home from Taylor’s teacher today that said he was saying no more often to them and it was always at appropriate times to answer with a no.  Praise Jesus!

Today as I pointed to a picture of Nemo I asked Taylor, without any high hopes he would answer, who that was.  He said Nemo!  I am so excited that he is not only listening to what I say at least some of the time, but that he actually answered my question and it wasn’t a yes or no question.  That’s big in Taylor world.  It’s great to have at least that communication with him.  I am going to try to work more on his colors, numbers, and letters with him.  I have been discouraged lately with reports from school about his ability reports in math, reading, and language that said he was below level.  I wasn’t surprised by the reports, but I had hope that he might be doing better than I thought.  After he answered my questions, I received more hope and strength to try more with him.

Taylor wet the bed again today.  I went to get him up and I found the door was locked.  We used to have to lock him in at night, after he went to sleep because he would get up at night and wander.  Not wander as if in a trance, but with little understanding of boundaries and danger.  Or maybe he has too much trust that no matter where he is someone he knows will find him.  We don’t use the lock anymore because we were able to acquire double-sided combination locks for all the doors leading to the outside.  Unfortunately if you even bump the lock portion of his door it will sometimes lock without us knowing it.  I told Ryan today and finally he agreed that we should replace the lock sooner than later.  I know some people would be mortified that we would lock our son in his room, but I would rather have to bust his door down in a much less likely emergency than have to go searching for him in the morning because of the much more likely situation that he gets out at night.  It’s upsetting that Taylor has been wetting the bed.  About two months ago we started a new medicine and instantly he was having accidents and wetting the bed.  Even though we stopped the medicine,he is still having the wetting the bed problems.  I know it bothers him.

I have to admit it.  Besides getting my son to the bus in warm up pants (in my defense they are Nike pants and not generic sweatpants – I went through a phase where I thought I wanted to teach aerobics so I thought I would buy stylish clothes.  But they are still sweatpants) I got home and decided to sleep in.  My daughter slept long  so it was great for me.  Besides feeling lazy, I feel a little more rested.  Yesterday the kids were particularly active, and now that Taylor has developed more of a social interest in his sister I have to follow them around and make sure he plays nicely since he doesn’t understand that his playing rough isn’t a way to play with his sister.  I also have to try to explain to a two-year old whose brother just pushed her why it wasn’t meant to be mean and that Taylor is sorry.  I don’t know if she  fully grasps accident and even if she did, it really wasn’t an accident; he just doesn’t understand.  I know he feels bad.  His face shows he knows he did something to upset his sister; he just doesn’t know what or why.

Big day today.  I stayed up till 2am painting touch ups on projects and deep cleaning since the kids went to Grandma’s and Papa’s house for the night.  I woke up before 7am to rush out to teach a cake class (at the Woodburn Art Center.  Great place to take classes!!!) from 9-11 am, rush home to prepare for possessing a bsf fellowship meeting.  Then kids came home earlier than expected Emma fell off the trampoline.  We think that Taylor pushed her.  We used to play a game like that with him but we always made sure he wasn’t going to fall off the trampoline.  He doesn’t grasp that concept yet and is a little confused why people keep crying or getting mad at him.  Poor guy.  I have decided to become a nonprofit organization so i can raise money to donate to grant funds who give to those with disabilities.  The main plan of income would come from Recitals I would give and in these recitals I will be laid bare.  Each song will be selected as a representative of a feeling I had, an event that happened, my faith journey, relationships, you get the point.  The goal of the recital is to open up a sliver of time into the life of a family dealing with autism and how our faith was a part of it through the whole process big or small.  We want to create an “I hear ya”  from parents that know what that’s like and for parents who are non Christians and suffering, a reason why we are still standing.  I also want the music community, really the community in general, to see just how difficult this life is and the challenges and decisions that need to be made.  I want it to be a voice for all the parents and children who may have none.

It’s late and I’m still up, a scene not unfamiliar with my life.  Night time is when all is quiet kids are sleeping and I am left to myself to think, read, play, pray, and more.  I have started this blog to create a snapshot into my life as I go through the challenges of parenting a child with Autism.  I plan on speaking as openly as I can, while respecting family members’ privacy.  I will use this as if it were a public diary that talks about the joys, stresses, pain, spiritual struggles and lessons, relationships, and treatment issues, work stresses, and more.  That being said;  It’s not time to meet me…

When I graduated college, I was planning my wedding that August.  In the next year I got called back to the final audition for Indiana University, the top 3 school for music/opera.  I became very ill the night before and Ryan almost took me to the hospital because we weren’t sure black was supposed to be a color that comes up from your stomach.  Actually we probably really should have gone, but I didn’t want to miss my audition in the morning.  I miraculously was just well enough that i might be able to audition, but that decision wasn’t made until about 10 minutes before my time.  I wanted to bring a bucket on stage just in case, but we decided that probably wasn’t the best idea.  Well I went out there and auditioned, knowing I was nowhere near in good voice.  I just wanted to make it through.  Needless to say, I didn’t make the final cut.  SO close!!!  Months later I learned I was pregnant.  My whole life view changed in an instant.  How was I to continue my goal to become a successful opera singer with the added responsibility.  I entered into Bel Canto Institute when I was 3 months pregnant.  I was surrounded by people just like me who were wanting to make it in this business.  But as the days went on, my heart was burdened.  I was unsure if this path was what I really wanted.  This disturbed me greatly and caused daily tears as i tried to understand why I would fall away from a dream I had for over6 years.  I saw the competition, fake friendships, people to watch out for because we are all trying to claw to the top.  When I thought about being in that profession I felt loneliness, sadness, stress,emptiness, fear of failing.  I wanted the profession, but not with all that, so I came away from it all very conflicted, trying to hold on.  Then my son was born; a beautiful boy in perfect health.  At around two years I was concerned that his language hadn’t moved beyond dada that he said just before  1 year. Doctors said to wait for six months and see because boys are usually a little behind.  At 2 1/2 I went back and was told to see the ESD.  THey tested Taylor and with no tact or compassion told me my son was autistic.  I left esd immediately very angry at how rudely I was told my son has autism for the first time.  Then we changed doctors and he recommended trying it again.  We did and the experience was a little better but the manner they talked about all our son’s deficiencies and him having autism was so uncompassionate at any level.  THis time we signed him up to receive services.  I cried that whole day.  My life as I knew it and thought it would be was over.  All the major events in life would not be the same for us.  Taylor may never speak, keep up knowledge wise, date, marry, have grandkids,…have the ability to understand and accept Christ.  Fear, severe desperate fear immediately invaded my heart.  I spent the nest couple years in shock and defense, and then we made the risky decision to try for a second child.  All this time I am still trying to hold onto this dream even though the dissatisfaction was still nagging my soul.  We got pregnant and soon Emma Grace was here on August 15th 2007 at about 5 in the morning.  She is completely autism free.  God had given us a peace about her from the moment she was born and we made eye contact.  We knew she would be okay.  That doesn’t mean i didn’t have my fear here and there.  But God provided relational relief through her and a never-ending friend and loving sister to Taylor.  She is his personal cheerleader.  Life has been hard for us with periods of enlightenment and peace.  We have learned so much.  THis wasn’t the life I planned on living.  I was supposed to be in New York somewhere singing successfully, but this is the way it turned and it has taken me three years of working through this to realize my dream wasn’t going to happen; it would change.  Now i dream of hearing my son talk to me.