Wednesday, February 27, 2013

Six Months Post AIT: Progress still being made

Sensi's occupational therapist commented on how well she was doing on their latest endeavor and how much she though the AIT helped her over the past 6 months.  Then my husband asked in passing the other day if we were going to do another round of AIT this summer for Sensi.
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I haven't thought about Sensi's AIT in a couple of months. She has been making progress, but as I said in  4 month post AIT, it is harder to tell what is part of her regular developmental progress and what is from the AIT.
There is a study that proposes that it doesn't really matter which therapy you do for your ASD child, as long as you are actively putting in the hours of having them participate in therapy. At least that is what I take from reading it.  It says specifically " Of those four variables [age, number of hours per week, number of months of treatment, and total hours of treatment,] only the number of months of treatment was significantly related to amount of gain in language, cognitive, and social–emotional functioning across the treatment period." We have put in the hours each month with her various therapies, and we are seeing results.

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I checked in with Sensi's teacher and she reported that they are in the process of mainstreaming Sensi into the regular education class for the whole morning, not just writing or morning meeting. Who would have thought that she would be able to spend the whole morning in a regular classroom, even with supports? Her school is amazing, but I know that she is less sensitive to some sensory input than she was. Another one of her teachers was saying that she is also participating in gym now, not just playing with a balloon in the a corner of the gym or twirling a hula hoop, but actually participating in the class. 
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I know that we are hearing much more spontaneous speech. I have Sensi drawing pictures and telling me the stories. She actually has taken to writing comic strip style social stories of her own. The sequencing we were working so hard on last summer is starting to really take hold.
She is still a jumper and a figeter, but she is less likely to have a melt down as she was last year. She listens to directions and follows them more readily. Just this last weekend she was playing with the garlic cloves I had out for a recipe. She started to peel the garlic and I said" Oh, you are peeling the garlic for me, make sure to put the peels in the bowl on the counter." It helped to point to the bowl while I was saying it, but she did a great job of peeling the garlic and keeping the skins off the counter and the floor. I don't know if she would have checked in to the directions or stayed with the task if I would have given directions before.
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I asked her speech therapist what she thought of her progress after AIT and she replied:  "It is difficult to determine what progress is due to.  As much as I wish we could tell with 100%, I just can't.  I do think from my observations that the AIT perhaps helped [Sensi] organize her environment and better cope with stimulation in that environment.  When she is better organized and emotions are more regulated, she is better able to access her language skills and allows us to work on gaining new language skills and that is always a great thing."
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Was AIT like how it was portrayed in Sound of a Miracle? Not for us, but the progress we have made in the last 6 months makes me think that it was worth it. I recently talked with the AIT therapist and discussed a second round of AIT therapy for Sensi this upcoming summer. We considered iLs and I looked into some other therapies and I think since we could see a significant improvement after the AIT for Sensi after last summer, we will do it again this summer.

 Luiselli JK, Cannon BM, Ellis JT, Sisson RW. Home-based behavioral intervention for young children with autism/pervasive developmental disorder. Autism. 2000;4:426–438. [Ref list]

Tuesday, February 19, 2013

Wednesday, February 13, 2013

Using Social Stories in Emergencies

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 My Sensi had a dental emergency. She had an abscessed tooth and it had to be removed. Luckily since she had to take antibiotics for a few days before the procedure, we were able to work on a social story for her getting her teeth pulled under sedation in the hospital.
Sensi told me "tooth hurts" and was getting into the dental floss. We tried to floss the tooth that hurt and there wasn't anything stuck between her teeth. In fact that tooth was half loose. I looked at her gums, and I saw a angry purplish bruise of sorts on her upper gum. I called the dentist and I made her an appointment for the next morning.
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 We had been to this dental practice just a month prior to have her teeth cleaned. The dentist we saw had recommended crowns, spacers, removal of those crowded teeth, fillings and sealants.  This just seemed like lots of work for a little girl. So we got a second opinion and waited to hear back from our insurance. That dentist was out on maternity leave and we saw Dr. D instead.
The abscess caused the emergency. We couldn't wait; we did negotiate the dental work down to pulling the two problem teeth, fillings and sealants. We also arranged to have the work done in our nearby hospital, so we were somewhat familiar with the surroundings. 
We saw Sensi's speech therapist on Friday, so we shared with her that we were going to have to go to the hospital next week to have her teeth worked on under sedation. 
We heard back from the dentist and the hospital on Monday morning for Sensi to have her dental work done on Tuesday at noon. I arranged for a physical the next morning. We saw her speech therapist again on Monday afternoon. I asked her if she could work up a social story about going to the hospital to have her tooth pulled. This is a facsimile of what she worked on with Sensi Monday afternoon.

On Tuesday morning, we went to Sensi's regular doctor for the physical, then ran an errand and off to the hospital. I showed the social story to the hospital staff, the anesthesiologist and the dental surgeon. Sensi and I had reviewed the social story several times the night before and that morning. She paid attention when I showed it to the doctors and nurses. 
I am happy to say that everything turned out okay. Sensi was excited about being at the hospital and was relaxed and happy up until the mask for the anesthesia being put over her face. Luckily she was asleep pretty quickly. They worked on her for a little over two hours and I made sure that the staff knew that I needed to be close by when Sensi woke up. Coming to from the anesthesia was tough for Sensi, she struggled a bit and we just gave her time, we didn't rush her. She was still a bit out of it for the rest of the day, but she was back to her normal self as soon as she could eat solid food.

Sensi has been thinking about what happened to her quite a bit. I know this because I have been seeing her do her own version of our dental emergency social story:

It is good to know that she understood what was going to happen, so she wasn't as scared as she could have been. I know that even though we did all we could to prepare her and the staff, it was still a difficult experience for her.  You don't need a special app or program, all you need is some paper and pencil, and a reasonable idea of the steps in the upcoming event to illustrate to your child what is going to happen. I am hoping that we won't ever have another emergency like the one we had, but it is good for everyone to know that social stories can be very helpful to your child and to the hospital staff to explain what the expectations are and to confirm the course of events.

Tuesday, February 12, 2013

Taciturn Tuesday: A New Look at Things

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 Art by Pete Goldlust

Wednesday, February 6, 2013

What I have been doing: Part II

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Preparing to face the school board was not something I took lightly. I am not the best public speaker. Saving Sensi's autism program was so important to me that I did it. I prepared myself with a fresh haircut and a new blouse. I wanted to feel confident standing in front of everyone. I practiced my talking points, and felt that I was comfortable with them.
It was good another parent talked to one of the school board administrators and got the scoop on how it works. I had an idea of what to expect. Knowing I would be standing up in front of the school board and an audience of parents and teachers was something I needed to prepare for. Knowing I would be standing at a podium with a light display telling me how long I had to talk helped; green went on when you started speaking, a yellow warning light next, then when it turned red you may finish your sentence then stop speaking. I would only have 3 minutes to talk, it made it seem not as bad as previous public speaking I have done.
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The parents all met before the open comments section at the meeting. We signed up in the order we wanted to speak and waited. We were introduced to the executive of title one funded programs who gathered us up to tell us that we may not want to speak after we heard the news he wanted to relate to us.
The news was that the children currently enrolled in the autism program could stay there, except area E. That is my neighborhood, the one with the problematic special education program that I have mentioned before. I told the administrator it was an unacceptable offer. I wanted to know why our children from area E would be excluded from this plan? He did not have an answer. We gathered after this news and decided that we would still stand up and respectfully state our grievances.

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I had volunteered to cover the second part of our talking points list about what makes the autism program so special. I finished my list and seeing that the light was still green, I added my own ad lib about Sensi's progress from being reluctantly verbal to being the narrator of the winter show. I must say that it was gratifying to see that the stories we told the school board moved them emotionally. I am even more gratified to say that they sent us a letter saying that the current students will be grandfathered in to the program and it will stay in its current location and format for now.
There are still some issues to be ironed out with the school district for children in special education, and we will continue to work on those concerns. For now I will say thank you to all of you who listened and cared.

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