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/

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.

My Child Did What?

image from: http://i.ehow.co.uk/images/a04/s3/10/write-progress-notes-substance-abusers-800X800.jpg

At Random Guy's recent IEP and 3 year review meeting I was told he was going to lose some services.  I was not surprised but I was a little nervous. He is doing so well he doesn't need the extra help from the occupational therapist and speech teacher. He will be in the classroom almost the whole day now. The only pull out he has left is his social skills group. The rest of the help he will be receiving in class or in informal pull outs to catch up on any class work that he is behind in.
The school social worker said that when she interviewed him for the 3 year review he gave her the best interview she ever had with a student. She said in all her years she will probably never see an interview like that again. She was so impressed with his speech and how well he conversed with her.  I was so glad to hear all these wonderful things about my Random Guy.  Usually he is kind of a taciturn kind of guy. I also know that he will still need some extra help socially, so we all agreed to continue with the education plan, but to change the amount of services needed. This is from Random Guy's hard work as well as all the hard work that the teachers put in for Random Guy at his school.  This probably wouldn't have happened as quickly if we had stayed at the neighborhood school.
We moved Random Guy when he was going into the 3rd grade. He had been having trouble with bullying. He was physically bullied in kindergarten, 1st grade and 2nd grade. In second grade the teacher and principal were saying that the bullying was a two way street and that Random Guy was doing some verbal bullying too. Considering that Random Guy was reacting to being bullied for years, it was not surprising that he was misbehaving at school. My problem was how the school was handling it. The principal had changed that year, and she was much different from the previous principal. She was very abrupt and did not handle these things well. I struggled with the teacher and the principal for months over this issue.
When the school choice catalog came in the mail one week, I realized that it was time to try something different. I called the next door school and asked questions about bullying and their program specialists. If there was a speech teacher and occupational therapist on hand, would there be a way to work on social skills and so on. I got some good answers, but the best answer I got was when the school social worker didn't know the answer to one of my questions about bullying and went to the principal and got back to me within a day with the answer. They have a way of working with the kids so that bullying is taken seriously and not tolerated.  I registered Random Guy for the next door school and waited to see what would happen. We got the slot. It is a very popular school with waiting lists to get in at the Kindergarten level. In 3rd grade there was room for my guy.

image from:http://parentingbehavior.com/wp-content/uploads/2012/02/NoBully.png

I had some work to do with the teachers and social workers, but all the educators in that building believed in Random Guy and understood what a fun kid he was.  The neighborhood school only saw his deficits;  the next door school saw his possibilities.  Thanks educators for your hard work and faith in my Random Guy.

She's So Sensitive

SensiGirl was born sensitive. She is a screamer, the kind of scream that vibrates your eardrums. I've been told she has the scream of a grown woman.  She really started screaming when I left her with the teachers in ECFE,(Early Childhood Family Educacion.) The other kids really didn't seem to mind when the mommies went to have a little coffee and sit down talk about child development. They would cry a little and then notice some cool toy or have a snack and they were over it. SensiGirl did mind. She minded so much that we had to work for months to get a chance for me to spend some time with Random Guy in the bigger kid classroom or to participate in parent group for a few minutes.
The screaming was one of the reasons they thought a special ed. preschool classroom was warranted. There was testing when she was 18 months old and every few months thereafter. She wasn't keeping up with the other kids in speech acquisition. She was too sensitive to her environment, she was too sensitive to everything.

When I saw this study at the Autism Speaks website it made sense to me.
http://www.autismspeaks.org/science/science-news/autism-risk-gene-linked-sensory-overload

We tried some different kinds of therapies but the one I think that has really helped her get over some of her reluctance to join us in our world was listening therapy. She was either checked out and spacey or she was screaming because something was too bright, too loud, too much.
When we started TherapeuticListening last year, I was hopeful, but didn't really know what to expect. Since we started Occupational Therapy and Speech Therapy all at once, (due to insurance changes,)  it is impossible to tell which one is having the most therapeutic effect, but I know she doesn't scream at family gatherings any more and she can now go into a gymnasium and not lose it.
This therapy is done in concert with other therapies recommended by her Occupational Therapist, so I warn you not to do this without professional input as some of the tracks can have unexpected or upsetting effects. They are trained specifically in how to do this therapy and it shouldn't be done on you own to just try it and see.

http://www.vitalsounds.com/CustServ.aspx

photo from: http://www.aitinstitute.org/AUDITORY_INTEGRATION_TRAINING/boy_white2.jpg

She is learning coping strategies that help her deal with uncomfortable situations. Last Thanksgiving instead of leaving early because she had been crying for a hour, she spent the first half hour at Grandma's house with her fingers in her ears. She chose to stay in a quiet part of the house and after a few hours told me she was ready to go home. That hadn't happened before. She can tell us things now, she has figured out sometimes life is too loud and how to do something about it.  I am thankful that she is making progress.