Four phrases that work lately!

It would seem to stand to reason that when we find something that works well with Janey, we'd use it over and over---that we would remember it.  But that's one of the tough things about autism in reality versus autism in theory.  In the middle of tantrums, screaming, lashing out, hours of crying, we tend to forget what has worked in the past, or if we remember, are just too burnt out to break old ways of doing things and insert the new ways.  As a way of reminding myself,  and to see if anyone else finds these useful, here's four phrases that have worked well lately.....

"Great job!"

Praise in general has almost been a breakthrough lately.  I don't think I ever realized how much Janey needs praise, and I would have said I praised her plenty.  But lately, I have just been laying the praise on extremely thickly, and it is amazingly motivating to her!  I'll find the smallest thing to praise, and will lavishly tell her what a great job she's done, give her high fives, thumbs up, A-Okay, the whole bit.  From putting her clothes in the hamper to not freaking out when we say no to asking nicely to take a ride---we can usually find something to praise.  I think Janey is partly just happy when we are happy, and if we are praising her, we use a happy and upbeat voice.  I've always heard you should praise kids at least 10 times more often than you criticize them, and with Janey, the 10 almost needs to be multiplied by 10---100 praises a day!


"Here's the plan for today"

This is something I really need to say every single morning.  I forget often that Janey wakes up unsure what the day will bring.  School is sometimes five days a week, sometimes four, sometimes not at all.  Daddy is home sometimes, not home sometimes, and William and Freddy are the same.  We might be going in the car a lot some days, and not at all other days.  When you really don't understand the patterns, I'm sure it's scary.  This morning, Janey woke up much earlier than she has been.  Usually, she's been waking up just a little before the bus comes for summer school, but today, there was a lot of spare morning time, and I could see her getting more and more nervous.  Finally, I remembered, and said "Here's the plan for today.  It's a school day.  The bus will come and take you to school.  Then you will come home, and then Daddy and William and Freddy will come home.  Daddy will take you for a ride in the car."  Almost instantly, Janey relaxed.  For some kids, visual calendars work, but for Janey, who I am realizing is a very good listener, just running down the day like that works best.


"Let me know when you decide"

There are times it feels like I spend half my life giving Janey choices.  She'll say "Want to watch Angelina!" and she always, always has a specific show in mind, but never is able to quite tell me which one.  I'll go through all the episodes, she'll not give me much of a hint what she wants, I'll put on the wrong one, she'll scream---it's not fun.  Or she'll open the fridge, wanting something to eat, and not finding it, and I'll go through everything I can think of to offer her.  What has worked lately, though, is to just say something like "I know you are hungry, but you're not telling me what you want.  Let me know when you decide" and then walking away.  Sometimes, that works in that Janey comes over and finds a way to tell me what she wants, but other times, it just works to break the cycle---Janey picks something on her own, or changes her mind and asks for something else more specific.  It seems like she likes having the ball in her court, and it's certainly more relaxing for me.



"I'll be so proud when you calm down!"

This is the phrase that's blown my mind lately a few times with effectiveness!  Janey has been screaming, lashing out, having a fit, and I have stepped back and said "I'll be so proud when you calm down!"  It's the kind of thing that if someone had suggested it to me, I'd have said (mentally) "Yeah, right.  THAT will work"  But it does, a lot of times.  I think it gives Janey a moment to back down and a simple goal to work on.  The SECOND she shows signs of calming, I give her a huge hug and tell her how proud I am.  Sometimes, she stays calm, and sometimes, I have to do it a few times, but even if it only works partially, I think it's a good exercise, because ultimately, the only way to really help Janey not lash out and scream is to have her figure out how to calm herself, on her own.  This way, I'm not telling her how to calm down, I'm just giving her a chance to do so.


Now, of course, lots of times none of these work.  And Janey has been in a good mood for a few weeks, so they might not work at all when her mood changes.  But while I am feeling like there are a few things that actually do work, I wanted to get them down on paper (or on computer, actually).  And here's a picture of Janey this morning, just after me being proud she calmed down!

Why I am thankful for medication

I don't write a whole lot here about medication.  This is maybe because it's not something I ever wanted to be part of Janey's life.  If I had never had Janey, never been witness to her life, I'd be someone who, although I'd be too polite to say so, would judge people a little for giving their kids medication for what I'd call in my mind "non-medical problems"  So if you have had that thought, don't feel bad about it.

Tonight, though, I realized anew how very, very thankful I am to medication.  Let me tell you about the evening.  Tony took Freddy to a college fair at his school.  Before he left, he asked me if I wanted him to give Janey her evening medication.  I said no, because I figured he'd be back fairly early and could do it then, and I thought she'd be okay.  Well, the minute Tony left, Janey started crying.  It wasn't severe crying at first, and I mistakenly tried talking to my parents on the phone a little.  That set her off more, and the crying turned into screaming.  I got off the phone, but the damage was done.  Janey spent an hour screaming.  By this, I mean hysterical screaming, screaming like you'd hear if someone was being tortured or in agony of the worst type.  I tried every trick I had to calm her down---food, a bath, a backrub, calm talking, snuggling, TV---but none worked, not a single little bit.  She continued to scream so loudly that my eyes were ringing.  I tried looking right in her eyes and saying "You need to calm down.  You need to stop screaming"  She tried, poor girl, she tried.  She tried to take a deep breath, but her hysteria was such that she just couldn't.

Finally, I gave in.  I don't usually prepare her medication, but I know how to.  We crush pills in a mortar and pestle and dissolve them in water, as Janey can't swallow pills.  I got them ready.  Janey never, ever resists her medication.  In fact, she often asks for it.  Tonight, even though I'm not usually the one to give it to her and even though she was so upset, she took it eagerly.  I'm sure it doesn't taste great, but she just has a drink afterward.

Janey calmed down within minutes of taking the medication.  I am pretty sure there's a little bit of a placebo effect there, as I don't think it works that fast, but in a way, it's not really a placebo effect.  She knows the medication is going to work.  It does.  She knows she will be able to get control, to calm down, and anticipating that lets her use her own rudimentary self-soothing skills along with the help I can offer to calm down some even before the medication kicks in.  Once it fully kicked in, she very happily snuggled with me, played with her iPad some, sang to herself and then within 45 minutes, fell asleep.

I said at the start of this how I would have judged people for giving their kids medication for "non-medical problems".  Well, I think anyone who had seen Janey tonight would see that how she was acting was in a lot of ways a medical problem.  She can't function when she is hysterical.  She can't talk, she can't eat, she can barely breath well.  She can't certainly learn anything, or go anyplace, or enjoy life a single bit.  The medication that allows her to get through the days---still not easily, but to be able to learn a little, talk a little, enjoy food and playing and going places at times---is necessary.  It's completely necessary for her.  I think something clicked in me tonight.  The little part of me that still hated to give her medication, that still thought that I should be able to make her happier on my own, was converted. I am thankful for the medication, as I am thankful for anything that truly helps my girl.