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.

image via: http://www.familyachievement.com/Services/spec_therapy/ait.htm

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.

image via: http://www.thegrid.org.uk/learning/sen/research/goodpractice/casestudies/progression_guidance.shtml

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. 

image via: http://www.activity-mom.com/2012/10/sequencing-cards-printable.html

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.

image via: http://www.pdd.co.uk/blog/2011/11/consumer-electronics-and-the-future-of-engaging-the-senses-an-ergonomists-perspective/

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."

image via: http://www.theplaydoctors.co.uk/Pages/January13Newsletter.aspx

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.



Resources:
 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]

 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2943764/

Three Months Post AIT

image via: http://thefirstgradeparade.blogspot.com/2012_08_01_archive.html

Things have started to normalize with school. Sensi has a new speech teacher in school and we had a meeting and hopefully we have an understanding now. 
We have had no more ear infections or waxy buildup causing pain in her ears. So I am hoping the cue to use flat hands to protect her ears is doing the trick. She is still giving herself wet willies when I am not prompting her. She picked out the fluffiest, puffiest pair of earmuffs last time we went to the store and wears them around the house.

image via: http://ll5.ecnns.ddns.org.in/

I asked her teacher how she is doing and she reported improvements. Some of the improvements have been variable, but she related that to our going on vacation for a week last month. There has been some regression in her behavior in her writing class.
She reported Sensi has improved in participating in the mainstream classroom, but has had some back sliding with our trip and her helper being ill these past weeks.  She is able to follow directions with prompts from her helper, stay relatively still and quiet and stay seated during class. When we returned they had started writing a letter for the next assignment. Since Sensi started on the assignment late and wasn't there for the initial instruction, she is lacking in enthusiasm for the project.

image via: http://exchange.smarttech.com/details.html?id=63b9b61b-55a2-4cfd-af6a-3c5f8e3e47dd

 I got a report from her other classroom helper that she is able to participate in calandar math and has been doing well. He is thinking of moving her up to the next level with another student. She was upset when it came to change the month over to November. That one is a mystery, aside from November contains Thanksgiving, one of Sensi's least favorite holidays. He also accompanies her to lunch. He said she has eaten pizza and chicken with rice. Aside from those meals she puts her tray on the table and turns her back on the food. We decided that he is going to prompt her to take one bite of her lunch before she can get up and go back to class. We will see if that works out, if it is explained as a rule, we might get some cooperation.

image via: https://www.facebook.com/SaintPaulPublicSchools/photos_stream?ref=t

One of Sensi's favorite paraprofessionals in class is Ms. E. She was in class last year when Sensi started kindergarten at her new school. Ms. E. says that the difference from last year is like she is another child. She reported that Sensi will sit with her during circle time, and even lean on her while they are listening. She isn't screaming, she isn't upset and she actually listens to what the teacher is saying.  Part of it is just a function of growing up, but I think part is due to her being less defensive sensory-wise in class. 

image via: http://www.skyangelestore.com/images/321Penguins/Penguin%20walpaper4_1024.jpg

Her speech continues to improve. Our tutor came for a visit to test out some apps with Sensi. Sensi was involved with one app and her tutor wanted her to stop and try another. Sensi said" Give me a minute!" and pushed tutor's hand away.  I am so impressed with her spontaneous response. She is also correcting her Qubo show promo scripts. There was one line that went "We should hide." For the last month she had been saying "Wish I..." This morning waiting for the bus we were following the promo script and she said it correctly this time. Little victories.
Her Speech Language Pathologist reported that when doing her assessment for the insurance company that for the first time Sensi tried to  answer almost all the questions. She only had some trouble with synonyms.  Overall, Sensi continues to improve, with some set backs. I am still pleased with the progress. Her speech is getting better all the time.

Using Unproven Therapies

image via: http://thegospelcoalition.org/blogs/tullian/2012/10/24/politics-is-not-a-cure-all/

The subject of using unproven therapies has come up at our home. Sensi has had some toileting regression this past month. Both with constipation and with soiling her pants. I talked with her Theraplay therapist about options. We can't use Mozart for Modulation as we have done in the past, since she is supposed to refrain from listening therapies after AIT.  We decided to try a two week brushing/joint compression trial.

image via: http://cafebonnie.blogspot.com/2009/10/what-is-wilbarger-protocol-or-brushing.html

I have looked and I have found no proven studies that brushing works. When it was suggested by her Occupational Therapist (OT) the first time, way back almost a year ago, I just ignored the suggestion. I figured we had other things to spend our time on, rather than trying to fit another therapeutic program in our schedule. Sensi's tutor and I have talked at length about unproven therapies and how many people still try them anyway. AIT and brushing are both unproven, but when I look at the idea behind the therapies they both made sense for Sensi at the time.

image via: http://www.especialneeds.com/sensory-motor-vibra-derm-massager-therapy-brush.html

I chose to try brushing since our choices are limited by the previous AIT and the trial is limited.  I figure it can't hurt and if it does help it is worth the time. I also know that there are very strict guidelines on using a brushing protocol for sensory defensiveness. We are not following those guidelines. We are doing what works for Sensi and our family. This entails twice daily brushing her body with a soft brush and then following that with joint compressions. I have both the deluxe brush and the cheap "nail" brush that is found at discount and dollar stores. Sensi has shown no preference for one over the other, but I do give her a choice of brushes before we start. That choice makes her more open to being brushed. I talked with her OT in school and they said that in the course of the school day the staff could fit in a daily brushing session too.

image via: http://ecx.images-amazon.com/images/I/311crxcgsiL._SL500_AA300_.jpg

The aim is to make Sensi more aware of her body so that she pays attention to the need to go and uses the bathroom promptly when this occurs. She has had a history of ignoring her body's needs to void and has been a variable eater. She has no set pattern to her toileting, like some other children. It has been very difficult to toilet train her mostly due to this inattention to her insides. This sensation of your internal organs and awareness of them is called interoception. Apparently, she has a lack in this area and we are trying to help her be more aware. 
We are a week into the two week trial, and I can say that there have been days that I missed a brushing session here and there. That being said, I have seen an improvement in her toileting. I will let you know if there are any huge breakthroughs. Although as you all may know, many of the gains our children make are small and slow. It is when you look back over a month or a year that you see the real progress being made.



resources:

Jessica Davich U of Wisc. Stout studies:
An Examination of Brushing Program for a Child with Sensory Sensitivity
A Comparison of Interventions for Children with Tactile Defensiveness


The_SPD_Companion-Wilbarger-Protocol.html
www.spdbloggernetwork.com/2011/05/18/the-poop-on-interoception/

Post AIT - Two Months

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I was talking to Sensi's Occupational Therapist (OT) and we were discussing Sensi's presence in her surroundings. It has become apparent that she is "here" more often then checked out and in her head. She is paying more attention to what others are saying and responding to it. She was trying to fasten her shoe and someone said something about her having a hard time doing that, she replied "I'm learning..."  She also has been saving up things she wants to say to use at an appropriate time, and is finding those moments more and more. 

image via: http://jasonrenshaw.typepad.com/jason_renshaws_web_log/2010/05/without-reflection-we-may-be-planning-to-stand-still.html

One windy day we were outside waiting for the bus.  We agreed on blowing bubbles while we were waiting. The bubbles blew up and away, fast and furious. She came up to me, looked at me and the bubble bottle and said "Jeepers, that's a lot of fun!" The "Jeepers" comes from her Franny's Feet show, but she used it at the right time and gave it the right emphasis and meaning.  I also find it interesting that the day after her school teacher and I were discussing where her iPad cover could have gone, it appeared suddenly in her bedroom.  All these things could have happened on their own as part of her normal development, but it really does seem, even if it is because of expectations being met that she is continuing to make progress.
She has still been having some issues with toileting. She had been dry at night for the most part since this summer.  Now she is only dry about 50% of the time. I am not sure what is causing this, but it is something I have noticed. 

image via: http://1063thebuzz.com/april-fools-prank-video-contest/

Her other quirk that has had some odd results is she has been plugging her ears with her fingers to keep the noise out. Several weeks ago she added wetting her fingers in her mouth and then putting her fingers in her ears to keep the sound out. The sensitivity to noise is something I expected and accepted. The giving herself wet willies all the time, not so much. She has had one ear infection and I had to take her to Urgent Care last weekend for ear pain. She had a plug of wax the size of a pencil eraser blocking her ear canal. I talked with her OT about writing a social story for her to have at Theraplay, home and school about not sticking her fingers in her ears. 

image via: https://www.facebook.com/SaintPaulPublicSchools/photos_stream?ref=ts

She is still snubbing her lunch for the most part. But apparently she is three for three with the chicken drumstick meal. I have taken to keeping the big carton of goldfish and some breakfast bars in the car for after school snacks when I pick her up for her therapies. She is still 97% in height and 95% in weight, so I am not terribly concerned about her missing a few meals. She will eventually adjust to school lunch again and we will forget all about her snubbing her food at school.  She is doing better and better, and that is all I have been hoping for.

Back to School: Getting to Know You Letters

image via:  http://prek-8.com/holiday/backtoschool/backtoschool_invitation.php 

I have a letter that I edit and adapt for each of my children for their new teachers when they start a new grade. I have talked about it here: that's-what-happens
This year, SensiGirl has the same teacher as last year. WunderTeacher gets it. She is very intrigued by Sensi's various skills and is a pro at handling difficult behaviors. She plans and thinks ahead, so luckily our collaboration on SensiGirl's Getting to Know You letter for ESY makes writing a new one unnecessary. I do need to update her IEP since she participated in AIT therapy this summer and she will need her hearing protected during fire drills and keep listening headphones off for at least 6 months.
We have to make sure to attend the Open House for Random Guy. I send his father, the Atomic Punk, along since I don't do crowds very well and he doesn't seem to mind too much. That way he and the teacher get to meet, since they usually won't see each other again during the school year due to Atomic Punk's work schedule. It's helpful that they meet him so that when I refer to similarities between Random Guy and his father that they have seen the grown up version and can make connections about where things are going in Random's development.

image via:  http://cheezburger.com/2582425088

Random Guy is going to be getting a full update for his letter as there have been quite a few changes for him this last year. He is still having trouble socially and will need some help with navigating the 5th grade social scene. We have cemented most of his basic math facts this summer, but he still has trouble with the spiraling and looping that is Everyday Math. I have more work to do to change his math curriculum in his IEP. Luckily at his school I have allies in both the school social worker and the principal.

image via:  http://www.buzzle.com/articles/getting-to-know-you-activities-for-the-first-week-of-school.html 

The letter goes something like this:

                        Getting to Know Random Guy

I just wanted to share some information about Random Guy with you. He started wearing glasses for nearsightedness this summer. He prefers to be called Randy now rather than Random. R. is a great builder and has a wonderful visual memory.  He is interested in American History, Geography and Social Studies, (he’s really good with dates.) R. does well with spelling and is very proud of learning to cursive write. He loves all kinds of Legos themes, Pokemon and Dr. Who. He is a fan of the Wimpy Kid Books and of the Avengers.

He may not look at you or make eye contact while you are talking, but he is usually listening.  It sometimes is easier for him to concentrate when he isn’t looking directly at the speaker. He doesn’t like those unfamiliar to him to touch him or get in his space. We have found that he does better with getting to class on time if he has a locker or coat hook at the end of the row, otherwise he stands back and waits and waits for the others to finish up.

He has an IEP with the disability label of autism, please read it if you can.  In it there is a testing adaptation, R. is supposed to sit apart from the other children when he takes tests. R. likes to know the daily routine and will most likely memorize it. It helps if it is written somewhere he can refer to at first.  R. doesn’t like to be singled out for discipline in front of the class, he would prefer that you take him aside and talk to him privately or at least quietly.  He also has some trouble with reading facial expressions or understanding when someone is being mean to him right away, and sometimes has trouble with bullies because of that.

He will not report a bullying incident immediately, but will tell me or his father later that day, or the next day. If you see Random upset, this may be the reason.

 Please contact me if you need any other insights or information about Random.

Savvy Advocate Mom

h. 523-0966

c. 432-8605

So that is the gist of it. Let them know the good things, warn them about the things that might be issues in school and make sure they know that you are aware of them needing to read the IEP. I also usually call a meeting in October to make sure that any problems are ironed out early.  Good luck with your own "Getting to Know" letter. They are a tremendous help. 

AIT, Berard Ear Training: Week One

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We started SensiGirl's AIT listening training. It has been eventful from the get go. Sensi was okay with wearing the headphones, since she had done other listening therapy in the past. Everything started well, at around the 20 minute mark she started screaming and took the headphones off and refused to put them back on. There were many screaming refusals and we finally gave up after about 5 long minutes of trying to convince her that  she needed to complete the session.

image via:  http://www.ehow.com/how_4788335_stop-tantrum-using-positive-parenting.html 

Our listening therapist gave me a social story to read to SensiGirl about some of the possible effects of the therapy. They had explained to me before we started the therapy that there might be some regressions in toileting and behavior otherwise. What I didn't expect was the Sensi party in the wee hours of the morning. She was up singing and bouncing at 4:30 and I think stayed up until I arose at 7:30. I can't be sure though because I think I fell back asleep around 6:00. We completed the second day; saying that she would be extra sensitive is a bit of an understatement. She plugged her ears at the TV, at the sound of the mailbox clanging open and shut and the squeak in the door. She was also extra bouncy and silly and spent some time just screaming because she could.

image via:  http://www.newsline.dot.state.mn.us/archive/10/feb/24.html 

The third day, Wednesday, was tough. She was compliant enough about wearing the headphones and listening, but she was having trouble with transitions. It didn't help that we had a few extra since her brother went to his auntie's for fun and games. She also wouldn't leave the building after her afternoon session. She kept telling me "A boat, a train!" I finally made the connection that she felt sort of seasick. So I picked her up off the floor, put her in the car and headed across town to pick up Random Guy from his visit at his auntie's house. There has been a lot of screaming but when I asked her if she felt scared or sad or sick she could answer me. She said she felt sick. That is a huge step.

image: http://loscuatroojos.com/2008/06/01/still-in-hospital-dizzy-and-itchy/

Then on Thursday we had no trouble with listening or feeling sick, she was popping out 5 and 6 word sentences here and there and playing hand clapping games with her brother. The down side to the day was the gigantic melt down at bed time with flopping on the floor and kicking and screaming. She was mad that she didn't get to finish watching the Angelina Ballerina special she picked for her Netflix turn. She eventually settled down but we had to compromise on nightclothes. She kept her dress on from the day and she let me put on her p.j. pants. She went to bed singing sad melodies; eventually she cheered up and went to sleep.
Friday, we made it through the last sessions of the week. I have noticed she was tired and a bit crabby, well a lot crabby. When we picked her daddy up at the airport she said "Hi Daddy," in response to his greeting. She usually has to be prompted. She fell asleep at her usual time.

image via:  http://www.scientificamerican.com/gallery_directory.cfm?photo_id=70669B02-9E06-A500-D55E65529708E864 

Over the weekend, the Atomic Punk (DH) noticed she is speaking more, and is more apt to answer questions now. She did request to be spun in the office chair for a good half hour on Saturday. She still plugs her ears at certain songs and sounds, but she is talking more about her feelings, she said she felt fidgety.
Sunday morning she slept in, which she will do from time to time. She was much more interactive with us. She had more to say about what she watched on TV and what she was drawing. In general she was sharing her thoughts with us more.
We have one more week to go. I will write the next update after next week is over. If you have had an experience with AIT listening therapy, it would be interesting to hear how things went for you.



resources: http://www.kidsenabled.org/articles/index.php/200603/the-power-of-sound-a-therapy-worth-listening-to/
http://www.autism.com/index.php/understanding_ait_summary
http://itunes.apple.com/gb/podcast/ait-institute-podcast
http://www.drguyberard.com/
http://www.georgianainstitute.org/