Changing the Way Autism is Diagnosed

It's fascinating to see where science is taking us:

Tests, Tests, and More Tests

Today we took Karis to one of the smallish local children's hospitals for a neurology screen.  The doctor asked for her history, and we told the same story for the millionth time:  child developed normally, interacted appropriately, spoke magnificently, then child inexplicably lost all skills and regressed to the level of a 12 month old.  Child "checks out" frequently during the course of the day, could be attributed to autism, could be the sign of a seizure disorder or other condition.

The neurologist believes that a full neurology work-up is in order.  That means getting admitted to the hospital for a couple of days for an MRI, EEG, metabolic lab work, etc., etc., etc...  We are just waiting for the referral to go through, then we will call to schedule the procedures.

(Joe:  Why don't you just say "small" instead of "smallish?"  Me:  Because it isn't small; it's just smallish.)

Goals for Zachary 2014

Issue:  TEMPER

Solution:  Respond calmly and slowly.  

Don't jump up and respond either negatively or positively. In the past I've stood up suddenly with a stern look on my face, trying to let him know that I mean business. My new policy is to move slowly and calmly.

When he gets angry and lashes out verbally about something, say, "Ok, thanks for telling me you want a drink. Next time you can just say, 'I want water.'"  If he is lashing out in a way that harms other people or property, I just physically restrain him and explain that I can't allow him to to hurt others until he calms down.  While I'm holding him, I sometimes give him gentle squeeze on his arms, legs, and head, and he really likes this. It acts as a tension reliever or something.  I can't explain it, it just works.

Zach has a strong need for approval and affection, and heaping the love on him goes a long way in preventing any challenging behaviors.  Also, check out this video on intense energy by the good folks at the Autism Treatment Center of America (home of the Son-Rise Program):  

Issue:  Poor sleep leads to poor behavior during the day

Solution:  Make sure Z is getting enough exercise.  A couple hours at the playground each day help him sleep better at night.  Better sleep makes him a happier kiddo.

Issue:  Limited language

Solution:  encourage talking

When he gets angry and lashes out about something, say, "ok, thanks for telling [screaming at]me. Next time you can just say, 'I want water.'" This encourages talking.  

Zach generally talks with the sole goal of getting his needs met. He's almost 5, and it would be nice for him to branch out and talk about other things.  While playing and reading stories we can say, "which do you like better?  I like this one better because he's blue."  

He's not interested in reading stories right now, but it's ok to approach him once or twice a day with a story and see if he's interested.

Issue:  Doesn’t follow directions

Solution:  Use playtime to make “suggestions” that eventually will evolve into directions.

“Zach, let’s jump on the pillow instead of the sofa!”  “Can I have a turn?”  “How about if we...?”

Issue:  Learning patience

Solution: Make a game out of sitting quietly with the timer.  Start with one minute, then two, then three...

Other ideas??

Issue:  Rigid and inflexible, doesn’t like change

Solution:  This is the first week ever that Zach has voluntarily worn a shirt without a face on it.  We are getting there, I guess we'll just keep encouraging him to step outside his comfort zone.

Goals for Karis 2014

ENCOURAGE EYE CONTACT

Solution: offer cheers and praise whenever Karis looks at you. "I see you looking at me! Great job!" "I love it when I can see your pretty brown eyes! Thanks for looking." "Great job looking, Karis! Hooray!"  Be specific what the praise is for. Don't say, "good job" without saying why.

Also position yourself for optimal eye-contact:  in front of her and a little below.  

Be goofy, dance and prance and spin to get her to look at you.

Check out my blog articles on "Maximizing Eye Contact" for some great ideas by the Son-Rise Team.

ENCOURAGE SPEECH

Solution: praise speech attempts, encourage Karis to ask for what she wants (water, trains, etc.), use thomas and trains to talk about speech (can use names of trains, colors, numbers), play games to encourage speech---such as- tickle game (say "tickle" over and over as you tickle, vary tone, pitch, tempo, and expression, then when she wants more, ask for her to say "tickle." Ask once or twice, then tickle anyway, even if she doesn't perform. You want to be approachable and trustworthy.). Trying it with "dance," "spin," "swing."

Praise her like crazy when she speaks, even if you don't understand what she's saying.  Praise her like crazy on steroids when she uses speech appropriately, both prompted speech and spontaneous speech.

ENCOURAGE PRETEND PLAY

Solution: join, then introducing one more thing. E.g. Karis lines up her trains, you line up something else (she won't share the trains), or help her line the truisms if she'll let you. When she looks at you, praise eye contact, then introduce one more thing, "look! Thomas is going down the slide!" "Percy is dancing!"

Issue:  Potty training

Solutions:  I have lots of ideas on this one, but bigger fish to fry right now.

Maximizing eye contact I (videos)

One of our big goals for Karis is learning to make spontaneous and sustained eye contact.  Here are a few ideas for how to achieve this:

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!!!!

Weekend update September 20-21

This was the first weekend I really dedicated myself to full-time play therapy with Karis. I woke up, made breakfast, worked with K from 8:30-11:30, made lunch, worked with K from 1-4, ran to eg eggs, did some reading about autism in the car before heading home, made dinner, then worked with Karis from 6-8. It was a full 8 hour day.


Great things we've seen:  Karis played "catch" for perhaps the first time ever (or at least the first time since her regression last year. She also said a few new words:  "Gordo" and "express," both Thomas-related words of course. She's still isn't really saying meaningful words. She babbles about Thomas and Percy, but won't ask for food or water. But it's still a good sign that she's talking more.  Also-early this week I bumped into her in the hallway and said, "I'm sorry!"  Then she walked down the hallway saying, "I'm sorry, I'm sorry..." over and over. Echolalia is a classic sign of autism, but for now we'll take any gains in vocabulary  any way we can get it.  :)