Saturday, May 12, 2007

SOS feeding program

We did it! We launched our offensive on the food issue. We're armed and ready for battle!

For those of you who don't want to go read about Jacob's food issues in detail, I'll give you a quick summary here. Jacob finds food extremely aversive. For many years, he couldn't even be in the same room with food (other than the dozen plus things he'll eat). This all has to do with his Sensory Processing Disorder (and a little bit with his Autism, but I think we can blame the vast majority of this issue on SID). His extremely limited diet and severe food aversion was reason enough for his Sensory Integration Therapist to want to make a feeding program a top priority. At the time (more than a year ago), I just didn't have the energy to invest in undertaking yet another thing. Jacob's diet was balanced, despite being quite limited, and I felt that this could wait.

Of course, as a result of his brother's poor eating habits, Zoo Boy has developed a pretty limited food repertoir himself. Despite having his own sensory issues, Zoo Boy's eating habits seem to be mostly a learned behavior rather than a sensory issue in and of themselves. I'll use an example below to demonstrate what I mean. But in any case, both boys will be involved in the feeding program that we have just started using.

The program is called the SOS (Sequential Oral Sensory) approach, and a concise description of it (and why it would be used) can be found here. Basically, it takes the understanding that these kids' feeding problems are based on sensory issues, and works on slowly desensitizing them to the overwhelming effect that food has on their senses. In a nutshell, you start by getting them to tolerate being near food, then progress to getting them to touch it, smell it, and eventually taste it. From looking at it to taste is a pretty long road, taken at micro-steps, but in the end should result in a child without an eating disorder, and without any trauma induced by the method. I've long known that this would be our feeding program of choice, I've just been lacking in energy to undertake it. But given that I'm feeling comfortable at the moment with our RDI program, and that the food thing is our last battle to surmount, I decided that the time was ripe to get moving with it. My hope is that by fall, we'll actually be able to concentrate on homeschooling and leave the therapies in the dust of our memories.

So above is a photo of our very first SOS session. I served lunch -- cheese and crackers -- as usual. Then I brought over a plate with a few of the same crackers, but with peanut butter on them. And a bowl with a few baby carrots in it. And a bowl with a small handful of raisins in it. As I set the bowls between the kids, I explained that they do not have to try them, but that I was setting them there in case they wanted to. Both kids panicked upon seeing me set the food down. I reiterated that they did NOT have to try them. Zoo Boy immediately settled down, with a happy sigh, repeating happily "we don't have to try them". Jacob burst into tears and told me to take them away. I explained again, patiently, that he did not have to try them. He moved to the edge of his seat to get as far away from them as possible, and he kept throwing nervous glances at them, but he eventually settled down and started eating his food. (A year ago he would have ran screaming for his room and refused to eat the rest of the day, so I'm REALLY glad I waited to start this program until now, when he's actually ready to accept more difficult things!) Eventually he ate everything on his plate and asked for more, but quickly followed it up with "but not those!" pointing anxiously in the direction of the peanut butter and crackers. I just smiled and made him some more cheese and crackers. When both boys were done eating and had left the table (with the new items entirely untouched), I put the food on my plate and ate it without making mention of it again.

Step one. Of one million, maybe, but at least we've begun. We'll continue at this level, presenting a variety of foods at meal and snack times in close proximity to where they are seated, until they are no longer stressed about the extra foods. Then the next step will be to actually put them on the same plate with the foods they WILL eat. I don't anticipate getting beyond that step anytime soon!


At 9:33 PM, Anonymous Anonymous said...

You may not ever see this comment, but I thought I'd try anyway. I just found your blog and have been reading through it. I'm finding it fascinating and inspiring. Anyway, I wanted to let you know that I completely understand about how Jacob feels about peanut butter. I don't have food issues, but just the smell makes me feel sick. He may have the same feeling. Reading your post I could totally sympathize with him!

At 2:58 PM, Anonymous Michelle said...

I have an adopted 18-month-old son who is also very small and losing weight, and he is very food-averse, taking only bottles. I need help desperately. Someone recommended this SOS program, but I need an outline of what to do. Do you have more information?

At 12:37 AM, Anonymous Anonymous said...

So much of what you have experienced is familiar to our family. We are at our wits end trying to solve feeding aversions with our 10 year old daughter. Having gone through the usual routes, I am interested in the SOS program and wondered if you are doing the program yourself or with the help of a therapist. I see you live in New England - we live in Vermont - and would be very grateful if you could refer us to a therapist.

In the meantime, keep up the good work - you are amazing! And Jacob seems to be progressing so well.

Wishing you a peaceful holiday season!

At 7:17 AM, Blogger Harvest Mom said...

I got information and guidance on the SOS feeding program from our Occupational Therapist at Children's Therapy Specialists, in Windsor, CT. The information she used for us she got from attending a workshop by Kay A. Toomey, PhD, at Toomey and Associates, Inc, 1780 South Bellaire Street, Suite #515, Denver, CO 80222. My suggestion for anyone interested in this program is to contact Dr. Toomey directly.

I hope that's helpful!

At 12:31 PM, Blogger Rona said...

I'm an occupational therapist who utilizes the SOS program and has taken Kay Toomey's course. It is an excellent program that takes the terror out of eating. I've seen many children such as the children of yours that you so articulately describe, and things do get better with time.

I, too, am inspired by your understanding and patience that exhibit with your children. I do believe that you are on track. Hang in there.

At 9:34 AM, Anonymous marti said...

I am an OT working with an 11 year old who is tube fed due to his aversion to food. They have ruled out any physical issues. I have looked on-line for direction and am excited to hear about Kay Toomey's SOS program. Are there any written references i.e. books on the subject? I don't seen any local conferences or I'd attend one in a heartbeat. Any resources?

At 7:45 PM, Blogger Nicole said...

Your story is so inspiring. I am a brand new Special Education teacher and I am struggling with a student who has the same sensory problems you describe with your son. I am just beginning to explore the SOS Approach and I am considering trying it with him. I am concerned on being able to obtain information on the program, but I am going to try contacting Kay Toomey like you said. Thanks!

At 11:12 AM, Blogger Harvest Mom said...

I wanted to post a quick update here, as this seems to be the topic I get lots of feedback on, even now a couple years after I posted about it.

My kids diets have NOT expanded in manner I had hoped they would by now, but in most cases, they can sit at the table with most foods,even those they don't like, especially Jacob who can sit down and eat a meal with other folks just like any other kid. Zoo Boy has more issues surrounding food -- the way it looks mostly. He's actually more game to try eating new things than Jacob is, although both boys pretty much take my word for it that a bite of something won't kill them, and WILL try just about anything I ask them to. We make a habit of making sure they try at least one new food a day, and once in a rare while, somebody likes something and adds it to their food repertoire. For instance, Jacob has discovered that he likes pumpkin muffins, pumpkin pancakes, and cinnamon french toast sticks. When your kids' diet is as limited as mine are, every new food is a victory! :)

Both boys are still taking the Brainchild Spectrum Support vitamins (you can google them) to make sure they are getting enought vitamins and minerals, and I'm careful to make sure both are gettign plenthy of protein, and 3 to 4 servings of fruits (veggies are still a bust) a day. They are both growing and thriving and are healthy as can be, so what we're doing is working.

So I would say SOS has been a success for us, although not a TOTAL succes. (In other words, my kids are still not eating normally, but at least they don't have as much challenge around food as they used to.)

Best of luck to all the parents and OTs out there working to overcome these difficult issues!

At 5:59 PM, Anonymous Anonymous said...

I am new to autism as my jacob is nearly three - allergic to every thing possible - we have just started the sos program here in brisbane australia and i recomened it to anyone - six weeks ago he would not even be in the same room as some of the first 7 foods - now he will have them on his plate or even touch them - he has eaten 2 new foods in 6 weeks - so what does the next six weeks of the course bring? - only good things. We are looking forward to going back after the holidays and trying the therapy meals at home - they have warned me he may have to do another 12 week course - but to any parent in the same boat - any change is worth it.

At 9:45 AM, Blogger Janis said...

So this is many years later but we are working with the SOS program for our daughter. We have seen many improvements - mainly ones that allow her to tolerate the food on the table. We are "taking a break" for now and working on some other issues - we've added a few foods but no longer have tantrums and vomiting at the sight of certain foods. yay! I highly recommend this program to anyone with children with eating disorders.

At 2:14 AM, Anonymous Anonymous said...

Just reading through your posts, i have a 3.5 year old that eats, Plain bread, RIce cakes and milk arrowroot biscuits no meat fruit or veg... we have tried every where in Australia that we can find, we do the SOS feeding program through his Sensory OT still nothing and have been quoted $50,000 to take him to America...

At 1:55 AM, Blogger katie said...

to anonymous in australia, I am in brisbane, my son has many issues with food, our doctor referred us to a dietition who we saw today, she has suggested this soso program for him and is making some enquiries as to how we can access it here when i find out more i can post again


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