The emotions of an autism parent

I suppose only if you have autism affecting your life can you fully appreciate the full range of emotions you can be put through.  The closest thing I can equate it to is being pregnant.  I remember pregnancy well, even 10+ years later....the feeling of joy, the feeling of fear, being so sad, then so happy...slipping from one extreme to another within a matter of moments.  Back then I blamed hormones.  Now...my child is the catalyst.

No one else can put me through the full gamut of emotions that Eli can.  Take last week for example.  The first week of school.  I started the weekend out with so much ANXIETY about how Eli would handle fifth grade.  Would his teachers accept him?  Would they find me annoying as I tried to help them understand my child?  Would they be willing to work with him and meet him where he is?

Then after the first day went so well for E, I felt so much HAPPINESS and HOPE!  But at the same time I've been PENSIVE and WATCHFUL...WARY even, waiting for the meltdown to happen because of the strain of keeping his behavior together all throughout the day.  Make no mistake...he did very well in school the first week.  But I knew what was to come eventually.

Open House was Thursday night.  I got to meet his teachers and then I was EXCITED for him because they were all so sweet and wonderful!  But then later in the evening my emotions swung to WORRY as he could not sleep Thursday night.  In addition to the worry comes the HELPLESSNESS and the sense of Flailing About, not knowing what to do or how to fix the problem.  How can you make your child sleep when his little body won't still and his busy mind just won't shut down?

Friday morning brought a little RELIEF when I realized he had ended up sleeping for a few hours!  But then there was great DESPAIR and SADNESS as I arrived home Friday after work to hear the screams of my child, lost in the throes of a full-blown meltdown...because by 5 o'clock on the Friday of the first week of school, with only three hours of sleep under his belt, my baby had had enough.

I was overwhelmed with so much LOVE, PITY and FEAR all at the same time, watching Eli stand on the edge of the yard as anger and rage gripped and coursed through him.  Actually fear is not strong enough....I was TERRIFIED he was about to bolt.  He looked so primal, standing there at the edge of our property...refusing to promise me that he would stay in the yard.  Refusing to come to the porch.  Refusing to let me come near.  I knew if I tried to approach, he would run, so I stayed where I was with Ben's car between us, to give Eli the sense of separation, the sense of a barrier, that he seemed to need.

Eli stood there with his shoulders hunched, folding in on himself, with his head cocked to the right at an odd angle... it was a defensive posture, a cornered animal stance, and my fear was that he would suddenly bolt into the road, or the woods, and I wouldn't be able to catch him or protect him.  That I might lose him!

As terrified as I was, I kept my voice calm and my tone lighthearted, and tried to make my words soothing, comforting and reassuring to him.  I knew what he needed right then was time.  Time to come back.  Time to calm down.  Eli could not be rushed or pushed.  This was his world we were both currently lost in, and I was going to have to wait him out.

I got a book and sat on the porch swing.  I invited him several times to join me.  My voice pleasant.  My smile warm.  My words inviting.  My heart broken and screaming Why!?.  This poor little boy, who has currently barricaded himself behind a tree trunk...this precious angel of mine, who has kept it together in his classrooms all week....is finally releasing the stress that's been building all week.  But why does he have to go through this?  Why is it so hard for him?

I kept reminding myself to be patient...to wait him out.

Finally he began to crawl toward me.  Creeping.  Silently.  Slowly. Trying not to be seen.  But I saw him.  And I waited.  I let him inch his way toward me in his own time.  You could see the battle going on behind his face.... did he really want to give up the anger to come read a book with mom?  Little by little he kept creeping until he got to the last tree between us.  He peeked out at me several times, always ducking behind the tree trunk again.

When at last I caught his eye, I smiled.  "You want to come read this book with me?"  Only then did he stand up and walk across the yard to me.  And we read.  We talked.  And he was okay again.  It had been nearly an hour at this point since I had arrived home to the screaming, and I finally got to go inside.  My reward was that Eli came inside with me.  I was feeling not only RELIEF again, but also GRATITUDE and THANKFULNESS that I'd been able to help my son.

Later I would cry and the SAD and FEAR would once again overwhelm me.  The meltdowns have been few and far between all summer....we have not missed them.  But now the stress and strain of school is upon us.  The meltdowns seem much more intense.  I've never been AFRAID that Eli would run away from the house before, so this is a new concern.  I cried and screamed out to God later when I was alone that I can't do this!  I can't even share it with anyone because who would really understand?  And thank goodness no one really does!  But then I calmed down and realized that I would do this, because I had to.  And I supposed that's why I write...to purge it from me.  To reach out to those who actually do understand and live it and maybe it will help them to know they aren't actually alone either.  There are a lot of us out here who do know, firsthand, all the emotions we're going through.

We WILL do this....because we have to.