ABA Meeting

Last week was busy for us, and we got a lot of new information from two meetings.  Every year Tucker has an Individual Education Plan (IEP) meeting with his teacher, principal, and all therapists.  Chris and I also met the ABA therapist Wednesday night, and talked to her for over 2 hours about Tucker, our frustrations, and our goals for the summer.  He slept through most of it, but Amy got a little bit of time to show us the way we need to start interacting with him.

So first about the ABA meeting:  we have TONS of work ahead of us!  And when I say "us", I don't just mean Tucker, Chris, and myself, I mean everyone of our family members.  The therapist explained that Tucker views all of us as a slot machine.....he pulls on our levers a bunch of times, and while most of the time he gets a "no" from us, all it takes is one more pull to get a "yes" to whatever it is he wants.  For example, he asks me to play in the trucks outside 95 times, and 95 times I say "no" (which is an actual problem we have), but then on the 96th time I might say "yes." Well I just taught Tucker that if he bothers us enough, a no becomes a yes.  Another scenario is if he asks nicely and we say "no", then he throws a fit, and someone else can't stand it and gives in.  Well, then, he just learned that asking nicely gets him nowhere, but throwing a fit in front of that person gets him whatever he wants.  This is just like any other kid; however, Tucker has absolutely NO skills to deal with hearing "no" or "wait" or other negative things that everyone has to deal with in life.

So viewing Tucker's behavior from this analogy of the slot machine helped both Chris and me make a lot more sense out of things.  And with the amount of money, time, energy, and effort we are putting into ABA this summer, there will be hell to pay for whoever messes with our new behavior plan! Just saying, you have all been warned :-) And that includes Chris and me, by the way. 

Amy (which is going to get confusing as Tucker's teacher is also named Amy) listened to all of our concerns and issues (rubbing legs, running for escalators, playing in trucks, turning on all lamps in the house, not being able to transition, not being able to take turns or share), and said that they all come down to two problems:  Tucker does not have the skills to accept the word "wait" and Tucker does not have the skills to accept the word "no".  Which apparently are two different sets of skills.  I told Amy my goal of having Tucker be able to wait 15 minutes in the therapy waiting room, while other kids are around and ladies with shorts on are nearby.   Amy said we are very very far from that goal, as from what she observed, Tucker can barely wait a few seconds for something he really wants.  So that will be a hard skill for him to learn, and we have to get waiting under control before we can move on to hearing "no."  It is all a little overwhelming, but Amy promises us that Tucker shows great potential for this kind of therapy.

Our first thing to work on is "manding" or requesting. A mand is when Tucker would spontaneously come up to me or Chris, and request something.  Not when I say "do you want ____" or "point to what you want."  The goal is for Tucker to spontaneously mand 100 times per hour.  We estimate that right now he mands about 15 times per hour, we can not count repetitive manding, like if he asks for chips 10 times in a row.  I bought pitch counters from the baseball section of Academy, and Chris and I will keep the counters in our pockets so that we aren't carrying around a clipboard with us at all times.  So we will count the mands for one hour a day, for seven days, then we will meet back with Amy to talk about Tucker's baseline data.

We (or I, really) are also completing ABC behavior charts, meaning we write down the problem behavior:  Throwing tantrums, hitting when told "no", etc.  We write down the Antecedent (what happened to trigger the bad behavior), the Behavior (what actually happened) and the Consequence (did we give in to the bad behavior, did he get ignored?), and finally the result....so far one of the results was a 2 hour tantrum :-/ But, we did NOT give in, so as exhausting as it was, hopefully we made some progress.

So anyways, there is a lot to work on, and once the therapists gain instructional control of Tucker (hopefully in the first few weeks) we will start working on potty training. I can not stress to you all how TIRED I am of diapers!  And Tucker is finally starting to show me that he is tired of them, too, yay! :) He pulls on them a lot, and he much prefers running around free of anything, haha. So we keep telling him that we potty like big kids, and we let him watch us (Chris has a real privacy issue with this, haha), and tell him how all the big kids and all of his friends and cousins use the potty.  We need his manding rate to be super-high for pottying, as right now he would never tell us if he has to go, and of course a kid has to be able to tell when he has to use the potty, be able to communicate that feeling, and be able to get his pants off and make it to the potty on time in order for it to all work.  So we are a very long way away, but hopefully we will be working on it soon.

The way that ABA works is that there is a Master's level, certified BCBA consultant (Amy in our case) that runs the program.  She comes in a lot at first, then as the program takes off, she comes in on a weekly or less basis.  Trained therapists come in for 2-3 hours at a time, 5 days a week, for a total of about 15 hours per week, to do the one-on-one sessions that Amy has planned for Tucker. At first, it will be a lot of playing and getting Tucker used to the therapists. ABA is really a lot of fun for the kid, as the child is learning skills that help him or her to understand and interact with the world better.  Tucker craves structure and order, which is why he does well with a set schedule. As we progress, we will be able to be more flexible with his schedule, and mix things up, which right now has about a 70% chance of a tantrum.  Tucker also tries so hard to play with other kids, but he just doesn't have the skills for so much in his daily life.  He still hits kids when he's excited to see them, which of course doesn't make him many friends. 

So he will hopefully be excited and wait by the door for his therapists each day, the way he does right now for Mrs. Joy, his speech therapist.   Once the therapists get the program going, they will take him outside and do more real-life things to work on Tucker's skills in different environments.

Amy was very impressed by Tucker's current therapists and teacher at school, and we all think that this is the perfect time to be starting ABA with Tucker. Please pray that we all do well with the change, as it is just so easy to give in and spoil Tucker, and this change will be hard for us.  Chris and I are moving Tucker towards more and more independence, as much as possible, so this is the necessary next step for him.  Hopefully by the end of the summer we will all look back and see a huge change, and a less frustrated Tucker.

Glimpses of Tucker

It is very hard to figure out what Tucker knows, what he is thinking, what he wants, or even how he is feeling a lot of the time. He has autism, is very speech delayed, and is quite the puzzle, so most of the time with him is a guessing game. If he cries out in the middle of the night, I don't know if he is hurt, having a nightmare, or whatever else could be going on with him. The other day Chris and I found him crying his eyes out on the floor saying "Ow, Ow, Ow" and we still have not figured out what was actually hurting him. In a lot of ways, he is like a baby-figuring out his grunts and cries, and interpreting them as happy or sad, never really sure if you got it right. We try to give Tucker many experiences, we like to watch his face as he sees new things or people. The way he feels could be evident by a smile or tears, but a lot of the time we get the "Tucker glance," which is staring off into space or even tilting his head to think about things. Oh, what I would give to know what he is thinking at those times!! Tucker's speech has been steadily improving, and every so often, I get a glimpse into my sweet boy's mind. A lot of the time, I wonder if he even notices the things we do, or treats and things like that; he does, he just chooses to show me what he knows on his own terms. Yesterday, Tucker came home early from school because he had diarrhea.....I was a little upset as he generally takes days to get rid of this particular symptom. So far, it's been okay, though, and we are hoping to be good and healthy for Christmas and the Dreams Come True trip on Monday. So anyways, Tucker was home early, and we picked up Gina and her friend Jenee at school. I drove to the bank, and along the way we passed Wal Mart. Tucker pointed and called out "Go to stoy (store), Buy some eggs!" Tucker watches things like a little hawk, and keeps it all stored up in his head. We laughed so hard at him, and told him we were not going to the store. He was pretty mad! Tucker also has started to "control" the car radio. Tucker and I spend a lot of time in the car, on the way to various appointments, and the conversation is obviously one-sided. I hate to just play the music and ignore him, but I think he really prefers that, haha. Well lately he has several phrases "shage da shannel" (change the channel) "put it lodder" (put it louder) and "music" which could mean either to change the channel or to put it louder...the meaning changes with his mood! He definitely prefers rap music, but he is even picky about what type of rap music. He seems to love Boom Boom Pow, and of course Chamillionare. It is a very nice change to have him interacting with me in the car. I am very late with my Christmas shopping and wrapping this year. Well yesterday I wrapped a few small gifts, and Tucker was very interested in helping. I let him put the labels on, then I put the roll of wrapping paper in the back room. Tucker ran in there and closed the door (never a good sign) and a few minutes later we heard him talking. He had unrolled the rest of the paper and was talking through the empty roll like a megaphone. It was so cute! I asked him "what do you think you're doing??" He looked at us and said, "wappin' pesents". Seriously, Chris and I were very surprised. Usually when you ask him "who is it?" he answers "who is it?" If you ask him "what are you doing" he answers "what u doin' " So to get an actual answer was a huge deal. I told him he was not wrapping presents, he was making a mess! He just grinned:) Every once in awhile Tucker shows us a little more of his personality and thoughts, I hope he becomes more and more expressive. I would really like to get to know my little guy better:)