New Doctor to the Central New York Area

Calling all parents/caretakers/teachers/therapists/etc. to children who have behavioral issues with their child (autism/ADHD/whatever...):

A new clinic is now open at the Upstate: the Family Behavior Analysis Clinic headed by Dr. Henry Roane.

Dr. Roane received his Ph.D. in 2000 from Louisiana State University in Psychology with an emphasis on the assessment and treatment of behavior disorders in individuals with developmental disabilities. He completed a pre-doctoral internship in pediatrics and psychology at the Kennedy Krieger Institute and the Johns Hopkins University School of Medicine.

I had the chance to meet him and his wife, Heather, last week at a meet and greet luncheon sponsored by FEAT. His wife, also a part of the clinic, specializes in feeding issues. Dr. Roane does not refer to himself as an autism expert, but as a problem behavior specialist. His particular interest includes severe behaviors, in particular, self injury.

Dr. Roane presented some of his research to us, and it was very compelling. There was an overview of how the clinic runs, and he presented video of some of his work at his previous clinics. It appears that they first work with the family to get a description of the problem behaviors. They then bring the child into the clinic and attempt to bring out the behaviors using various possible antecedents. They have customized software that one of the clinicians uses to track various variables, such as the occurrences of problem behaviors, and other observables. The session is videorecodred. They analyze the data and then attempt a treatment plan. Their goal is to lessen the problem behaviors by 80% for each child - and according to the information he presented, he has been able to achieve that rate (and usually even better) for a majority of his patients. (I want to say 90% of his patients, but I am attempting to recall the presentation from memory and could be wrong.) Once the treatment plan has been tested for efficacy, it can then be documented for use in IEPs. The nice part of the program is that they teach family members how to use the techniques and give them the guidance they need to follow through.

Dr. Roane and his wife, also a clinician, have worked with some really tough cases. They provided pictures of patients who were self-injurious to the point of hospitalization (tantalizing to watch around lunchtime, eh?). One child had gouged his arm continually and the scars resembled that of a burn victim with grafting, another tore her retina (to the point of almost blindness), another client had pica and swallowed everything - he showed an X-ray in which the child had swallowed a safety pin that was closed, but opened while in the throat. These cases are so troubling for these families - and frequently insurance companies refuse coverage citing that it is not a medical condition. Dr. Roane has experience with handling insurance companies and school districts. In other words, he doesn't leave these families hanging with just a report and some ideas on how to manage. He appears to offer them the support they need beyond the treatment plan, with training, and help in resolving issues with IEP's and insurance companies. I do hope his work is as good as presented.

I cannot personally or anecdotally recommend him, but he seems to come with a very good reputation and good credentials. Hank had an aunt who was severely retarded and had self injurious behavior. His interest in the field began in college when taking a psychology course where they addressed such issues. I find that when people have a personal connection to an interest, they are just that much smarter and motivated about the issue.

The clinic officially opens in January, and they have begun a patient list already. For referrals please contact Kelly Martini at (315-464-3145). I am hoping this clinic can give hope to those parents who are struggling with issues with their babies. BTW - they handle ages 2-21.

Software

Last night I had the doctor next store come over and give the kids' lungs a listen. The cough they had sounds like it is getting worse, and I was nervous that it could be bronchitis, or something worse. he said they sound clear. That makes me feel better.

So, Zach put his mouth on my finger last evening, again, not out of anger. I was anticipating a bite, and he looked me in the eye, and then gave me a kiss. It was as if he had the urge to do it, and stopped himself. Phew.

With Zach getting some computer skills (more than Sophia had at this age I might add), we are now looking into software packages that could help him attain or bring out some of his skills. Zach grossly under-performs for people when in typical learning settings, but when given motivation, he can perform a lot more. Finding motivators for Zach has been difficult. What has been interesting to him one day, may not be the next. We run constant preference assessments on him to see what gets him going. Is it a toy? A video? A food item? A tickle? A bounce on the trampoline?

In the beginning, the therapists started with solely edibles, and in particular, candy to get him going. Zach did not care much about social praise at the time - remember this is a kid that would look right through you as if you didn't exist. The therapists carefully paired social praise with the edibles until the social praise was associated with something positive for Zach, and they were able to fade out the edibles. This is part of the design of ABA.

After edibles, videos came next for Zach. He would even request "mooeee" for "movie". Once he could say movie spontaneously, they actually had him qualify which movie: "Blues Clues"? "Thomas?", "Dora?". He did it. Of course, this was a skill he had at the peak of his summer sessions when he was receiving 35-40 hours of intense therapy a week. Hopefully, we will get there again.

Anyhow, one therapist that Zach really took to was Ali. We privately hired her for the summer to work with Zach, and she would do "her work" with Zach (usually running the discrete trials and programs the lead therapist would leave for her) and then she would end the session on a positive note by going into his bedroom and turning on the computer and playing with him on the computer. Did I happen to mention he mastered more programs during this time period when she was around than at any other time? While we could give all the credit to Ali, I feel like I should have picked up on the fact that she was smart enough to realize the reinforcing quality of that computer. The other therapists didn't quite have the knack of using the computer that Ali did so it was not continued to the extent it was used when she was here.

Light bulb moment recently. So Steve and I were actually considering whipping out some software that would be a game/skill builder and design it to match the skills he has and ones we would like to work on. It is so nice having a master programmer for a husband - and yes, he is probably one of the best programmers out there. Being a geek, I can tell you it was one of the things that attracted me to him. (BTW - he's not just good, he's Google-good - yes, Google contemplated him for a position, but Steve backed out once he saw the cost of living in the areas we would have to move to.)

Ahh, but wouldn't you know, there are already packages out there for kids on the spectrum. A few of them even have an ABA approach! This, of course, makes sense to me, since ABA is methodological and scientific in its approach.

So now we have to choose which program we think we will go with. They are not cheap, so I don't want to just throw money away.

There's Fast For Word at $1300. ( YIKES!)
Discrete Trail Trainer Bundle at $150, a little easier to swallow.
Teachtown, $10 up front, and $40 a month.

These packages in particular are interesting, because they track progress and actually even have an intelligent feature that automatically scales the levels of actitivies and type of activities to the levels the child demonstrates. The other thing I like about this software, versus traditional typical learning software, is that incorrect answers are not rewarded only correct answers. One of Zach's current games will allow you to hit buttons that are non-functional relative to the goal of the game he is playing, but still do something goofy, like make a funny noise or face on a character, which is a reward for him. Sometimes he will play with these little Easter eggs rather than the game, which makes the game last a little longer with nothing gained. In other words, it wastes time.

One thing I have read that I need to be acutely aware of is that we need to limit the time on the computer. There are a lot of children on the spectrum who become addicted to it, and won't leave the computer, when asked to (OK let's be real here, when forced to.) Some children will actually become combative. So glad I could talk to and read some of the veterans experiences before going down this journey - hopefully I will avoid a few land mines now. Some of this software has built in timers to help you with this. I am also looking to see if there is a built in timer function we can add to our computer generically to do the same thing - Sophia could use it, and let's face it, so could I! Once in awhile, I just can't seem to get off facebook. :)

There is a plethora of gaming software out there. Still need to go through it some more and talk to teachers, therapists, and other parents on their opinions of it. If anyone has used something- I would love to learn what you think - so send your comments in!

uugghh

He couldn't just let me have a good day now, could he?

Zach bit me tonight. Twice. Only me. He wasn't mad. He was acting spazzy; running around, jumping, jumping on me, kissing me, and then whammo he tagged me. Later on, was just about the same thing, he was running around, jumped on me, pulled my hair, and went for it.

Oh please please please please may this not be a new behavior. And please please please, may he not do this to anyone else!

Mouse Leg Balloon

Hot off the press:

Zach has learned to move a mouse independently. I am still in shock. He still has to learn how to fine tune his movements, but he definitely gets it and that is step one. The game he was using doesn't require him to click, so that will be the next step. He still has more fine tuning when it comes to how much to move the mouse around, however, he is proficient enough to play this particular game independently ~85% of the time. Lesson learned: when motivated, he will learn.

Verbally, we noticed he is spontaneously saying words more frequently. His old words of banana and apple are most obvious, although he referred to an orange as an apple which I had to correct. Problem is - orange is a hard word for him to say. It will come in time I am sure. He has also said cracker, chip, ting, milk, juice, bubble, ball, tickle, spontaneously although when referring to an object, is was usually within sight or sometimes visually prompted by holding the object before him to make a choice. But not always. A few evenings ago, while he was sitting near me, he said "leg" and gestured for me to rub his leg. Last night, we were at Wegmans and they gave us balloons. Before we said anything, Zach said "aboon" without any other prompt. What is particularly interesting is the leg and balloon are not things we are working on, they again were just highly motivating.

As for his school program, good things happening there, although I feel that in some areas he is doing less for them than he can do at home. His OT reported that he needed help completing puzzles and simple shape sorters - and we were really surprised by this. He was given one shape sorter with about a dozen different shapes last Christmas, he had it figured out on hiw own within 3 days. But then again, the PT wrote that he had ridden his tricycle independently across level pavement for ~ 20 feet, and we haven't seen that at home!

We were able to get candy canes that are GFCF, no artificial dyes, and organic. At $3.25 a box - I have to shudder a bit, but they are one of his favorite food items right now, and I am thrilled that I could find them at all! A highly motivating item that will be sent to his school. Let us see if that creates any results.

But right n0w, all I can say is something is going down with this little boy, and it looks good.

Never Give Up

 

I found this tonight amongst a bunch of scrap paper that Sophia had scribbled on. Sophia never used to like to color. Never used to like to draw. She avoided it at all costs and became irritated when anyone tried to help her - teachers, therapists, sitters, but mostly me. Writing was the thing we noticed that she was so behind in that led us to her evaluation, and then we really learned a lot about what was going on with her. She has had therapy 2x a week since September of 2008, she had preschool where teachers worked with her, we hired an OT major to work with her for 10 hours a week this past summer, and still, she struggled to trace the letters in her name, let alone independently draw them. One day a few weeks ago, I gave Sophie an old notepad, half used. And then there it was. Something clicked. She drew things on every page and then came and asked me for another notepad. She all the sudden had a voracious appetite for sketching. She brings notepads in the car with her and sits at the kitchen table, drawing, sketching, writing. When I saw this piece above, unsolicited, a piece of scrap paper with all 26 letters in order on it, some correct, some not so much; my heart filled with joy. It has come to her. Was it the therapy? Was it a teacher? Was it her time? Yes. Lately I have become concerned that Zach may have a cognitive disability. A close relative insinuated recently that it was wishful thinking on my part that I don't believe that Zach has cognitive challenges. Mind you, I love him so much, and no matter what label anyone sticks to him, I will never love him less. I asked a therapist to comment, and she quickly diverted the conversation. I am sure it is an uncomfortable topic. I am not sure if she did this on purpose or not. But I began to question this more. This unknowing seems to take the wind out of my sails. Then there was tonight. I was hastily cleaning up, found the pile of scrap paper with scribbles, with the alphabet hidden in the middle. I was just about to dump the whole pile of scribbled scrap in to the recycling bin, when something made me stop and look through it. I had begun to think after all we have done with Sophia that nothing would ever get her to write. I remember thanking God for the keyboard, knowing how proficient she was becoming using it to play games. And voila. Last week Zach uttered a decent number of words spontaneously that we have never heard him say before .... and haven't heard since. Zach does not understand the concept of exchanging ideas or thoughts, but that doesn't mean he doesn't think. He doesn't say much, but that doesn't mean he is not understanding the information being presented to him. Sometimes all this therapy doesn't feel like it is doing much because of my perception which might not be reality. It's easy to feel like it might not be worth it. I am glad I have Sophia as a reference. She is writing! More importantly, she is trying to write. I often wondered if the reason she wouldn't even try was out of fear, knowing that it was so difficult for her. Could this translate to Zach? I think so. I am glad that the Big Guy upstairs sent me this little wake up call to see that indeed, all things are possible. I just need to keep my eyes and ears open. Oh yeah... and never give up. And I will gladly accept scrap paper or notepads if anyone wants to make a donation. We are beginning to run short!

Manding and Tacting

Manding and Tacting (nerd speek for requesting and labeling)
A quick and dirty look over the past week.

• Zach has been spontaneously manding for milk, apple, pretzels, and chips (potato chips) at home this last week when the item was present (sitting on a counter or table).
• He also manded for "tickles" after a prompt.
• He has had a lot of spontaneous tacting this past week to include: penguin, square, circle, blue, green, Thomas (and a few others I didn't document nor can I recall) as well as the phrase: "wake up", and "boo" (wanting to play a peek a boo type game).
• He has shown us that he is able to play another game on his computer that we did not realize he could play. (That makes 2 new games this month) It is a sort of shape-sorter game.
• He also has responded to some 1-step directions: sit (when standing on his chair), lift your dupa (when getting dressed while laying down in an effort to get pants up), give me your foot (when putting shoes on), pick up and put in after being prompted.

The Meeting

I believe that we may have had success. We met with the lawyer before the meeting. I was a Nervous Nelly and spent most of this pre-meeting time rambling. I said a prayer that I got it out of my system before the meeting. Then there was the meeting. I kept on reminding myself to "listen, don't speak, listen, don't speak". I did.

I found out as entering into the room to have the meeting that the school district was not notified that we were bringing a lawyer. They dealt with that very well, and said if we came to an impasse, they would halt the meeting, and reschedule until their lawyer was there. I appreciated that.

We had asked our previous BCBA to conduct a VB-MAPP on Zach a few weeks ago. She ran this tool, which indicates levels of verbal skills, problem behaviors, and transition abilities. Transition abilities indicate if the child is progressing in a pattern that is successively more independent in an effort to get them in the least restrictive environment educationally. This same tool was used in May and in August.

The results of the VB-MAPP indicated that Zach has shown a regression of skills since entering the school program. When I first reviewed these results, I was shocked at the level of regression. I was deeply saddened about this and actually considered if we were doing the right thing by having him in the school at all. We reviewed all of the options again to see if there was a more appropriate fit. I consulted with the "experts/specialists" to indicate what the best option was. The combined school with itinerant services seems the best option. A school option alone is not meeting all his needs, a home program in practice was not fully effective in our experience, Zach was resistant to therapists at home and the home environment was becoming an aversive.

Zach loves going to school. He is getting the idea of structure and routine. He is accepting other individuals into his life. These are all important.

During the course of the meeting I did review Zach's schedule at the school. The county representative actually requested an additional session of speech a week ( he will now be receiving speech 5 times a week). I was surprised by this - but actually OK with it. What I feared was that they would reduce anything else we requested by the this time.

The school then asked the director of the ABA program at Zach's school what she recommended to get Zach back to his progression of this summer. She deferred the question to me. I hated this. I really wanted her to speak to this. I was a little flustered since I oh so intentionally was trying to keep my trap shut. Had I gone in there expecting to speak to this, I would have probably unintentionally rehearsed some key phrases. But here I was having to respond on-the-fly. I stumbled a bit, but the gist of my request was that I wanted 2 hours a day of in the home ABA on top of the school program. I did not request a 1:1 aid in the classroom. Although I think this is a good idea, it wasn't top priority. However, I am in the process of trying to devise a strategy that would in effect do this. I will be attempting to find a few interns at SU or LeMoyne who are looking for internships for next semester and hoping that SPICE can add them in?? BTW - if you know of anyone, let me know! PLEASE!

We then discussed the "who" of this matter. I basically stated that H. our EI BCBA therapist would be a good fit: 1) because she was familiar with the case, 2) because she used the same approach and had a similar philosophy to Dr. P (the ABA director at Zach's school), and 3) because she was available.

There are some major contractual issues (hoops that need to be jumped) in order to get things in place. The problem is, they can only bill a speech person for 1 hour a day - this is the goofiness of how contracts work - they have nothing to do with the reality of the situation. I hate when protocol/policy/process dictate how to do something and one has to retrofit what makes sense into some limited scope. Uugghh. Saw this at work, read Dilbert cartoons about it, and now have to deal with it with my kid. I pray that we receive good news by the end of the week that this can be worked out somehow. 1 hour a day saves us roughly $12,000, 2 hours will save us $24,000. (I am not going to lie to you - I still have hope that we can one day redo our kitchen as we intended when we bought our house... I am trying to keep that dream alive. LOL)

So there you have it - good news, but not smooth sailing. Please say a prayer that they can finagle a way to handle this situation. I keep on thinking that we are set until May, and then what? Take each day as it comes....