How our Lives have Changed

There are a lot of autistic people out there who are high-functioning.  They think differently, and act differently, but they can still get their needs met and look after themselves. That's how Zachary (almost 5) is.  He has some definite issues, but I think with intervention and maturity he'll be able to come out of a lot of it and function well.

I was struck this week when I was lying on the floor with Karis (39 months) and Charlie (15 months) walked in.  The 5 minutes Charlie was in the room, he asked for a drink ("Deent!"), initiated a game of catch ("Ball!" he exclaimed, as he threw the ball towards me.), and got his shoes and requested to go bye-bye ("Ba-ba").  It hurt my heart a bit that my 1-year-old's verbal and non-verbal skills now exceeded my 3-year-old's skills.  While Charlie is learning new words and skills every day, Karis' growth has been pretty stagnant over the summer, after her major regression over the last school year.

If we were in the US, Karis would be getting 40 hours of behavioral therapy each week and Zachary would be getting 20-40 hours.  I knew when we received our diagnosis that our lives would change, but I didn't realize that the entire weight of this change would now be on my shoulders.  Parents have been trained to do behavioral therapy before, and done so very successfully.  I know we can do this if we really dedicate ourselves to learning and executing the program, it's just the logistics that are challenging.  I can spend an hour with Karis in our play-therapy room, or I can spend an hour reading a book about autism that will make me a more effective playroom facilitator in the long run-while I ignore Karis and she lies on the floor staring off into space.  Why does every decision I make seem like the wrong decision?

I get up at 5:30 to work out (but often end up blogging or making lists instead, since my head is always full of thoughts I need to put to paper).  I make breakfast around 7.  I try to spend time with Karis after that, but it seems that everyone needs something from me and keeps interrupting,  then I snap at the kids, and then I feel guilty for snapping at the kids when their needs are legitimate as well.*  At 10 Charlie goes down for a nap. I try to knock out Maggie and Paul's schoolwork then while an older child plays with Karis (or an older child supervises school while I keep working with K and Z).  At noon, Charlie wakes up and we eat lunch.  At some point in the morning usually I send an older child to the store to pick up eggs or milk or whatever.  

In the early afternoon we spend more time in the playroom, then we go to the park around 2 while Charlie goes down for nap #2.  I'm not sure what we'll do in the winter when it's too cold to comfortably go out, but I don't have time to worry about that now.  Usually around 4, Z and K are so hungry, so they eat and early dinner, and then we work some more.  Then they eat again around 7 and go to sleep around 8.  

Every activity that we do is designed to promote eye contact and speech, and it's hard to always bring my A-Game.  One of the principles of the Son-Rise program is the three E's:  energy, excitement, and enthusiasm in your interactions with your child, because you want to show them that our world is an exciting and wonderful place to be.  I'm not an enthusiastic person by nature, so it's hard to muster up that kind of zeal hour after hour after hour after hour....

We are staffed about half-way on volunteers, so I'm hoping that eventually I'll have 2 people coming each morning to work individually with Z and K so that I can do the mom-thing to my other 5 kiddos in the mornings, then dedicate myself more fully to Karis (and Zach somewhat) in the afternoons and evenings.  

Every night I make notes, I review notes, I write lists, I email volunteers.  It's exhausting, and I feel so inadequately equipped for this.  The last few days I've felt such a sense of fear:  fear that we're making the wrong choice by staying in Germany, fear that I won't be effective enough to help Karis, fear that she will regress worse than she already has...

I do think that I probably am expecting too much of myself, especially right in the beginning.  I simply cannot do it all,** so I need to prioritize until things start falling into place a little better.  Is working the program more important that troubleshooting the dietary issues?  Is working the program more important than spending lots of time recruiting and training volunteers?  Is working the program more important than washing the dinner dishes?

Once I said to Joe, "Autism will always be a part of our family, but we need to make sure it doesn't consume us to the point of neglecting everything else.  Let's put it to bed at 9:00 and just focus on our own relationship."  Somehow, in the midst of all the craziness, I've forgotten to take my own advice.  There will always be more to learn about autism, more to discuss, more things to try, but I don't want to forget all the terrific stuff that makes being a family so great.

*I may be sending M & P to school.  I haven't decided yet.  It would enable me to give more attention to K and Z, but I'm not sure if it will just create more work for me in the long run.

**But I want to do it all!!!!