It has been fascinating to see the changes in Iain since begining this protocol. We have had some rough patches, but now he seems to love it every bit as much as we love the effects it has on him.

On Saturday evening, I was busy with the other boys upstairs cleaning their room and Iain dumped himself on the floor in front of Bill in the living room, pulled up his shirt and said "bwa-shnnnn" (brushing). Bill was astonished as Iain categorizes people for the function they provide him and Bill sure is not the one he would associated with therapy. So, Bill complied and Iain was a mush afterwards, almost glazed over again and definately very quiet. I think Bill uses a bit more force than I do so it affects Iain a bit more.

So far we have noticed several of the daily battles are either way less intense or non-existant. The "shoe" battle is over it seems as we have not had one single meltdown since begining the protocol. Also, he always has a hairy hissy fit for transitioning out of the bathtub and the last two nights he has simply come out when asked with no fuss, no muss. Washing his hair is still loads of fun, but not so bad as to make our hair stand on end as usual. Transitiions in general are much, MUCH better, he has not pitched epic fits at all. In fact, his protestations are pretty laid back now. His focus seems a bit better and last night his feeding was great! His speech is exploding. Just absolutely exploding. He is singing and I am losing track of all the "new" words he seems to be using and I am positive it is not all echolalia. For whatever reason, he is singing up a storm shortly after we do the compressions on him and then begins talking like he has years of communication to catch up on.

Last night he blew me away when he grabbed my hand and dragged me from the kitchen into the dining area. He pulled me to the floor and put his face under the buffet. I looked and way in the back corner were two of his cars. Not a word out of him, but he non-verbally got me to do what he wanted! :yahoo: This is an incredible accomplishment as this kid normally stands in the middle of the room (and not necessarily the room his needs have to be addressed in) and shrieks. No way in a million years would I have ever guessed to look for cars under the buffet.

Yesterday, we went to a park in the afternoon and I forgot to bring his brush. We missed a session and by the time we left the park we had a Mr. Crankypants starting to emerge with some of the little battles starting again. When we got home I immediately did the brushing and he was calm and relaxed again. I cannot see in any way where this is co-incidence as he has just been an absolute joy to deal with since we began this. He is at daycare today so we shall see how it goes as I did the brushing this morning and will do it after daycare this afternoon and before bed (about 1.5 hours before as it now seems to energize him after he has his relax time). The teacher noticed the difference right away as Iain was in a great mood and transitioned into the room right away. Also, he did not scream when addressed. :smt041

There are just so many "little" and big things that have changed. I just can not believe how much of a relief it is not to have my head pounding first thing in the morning due to meltdown number 325.

This morning when I did it, he laid down on the floor happily and presented his legs, arms and back. He does much better with this in the morning, but does not make me chase him down in the afternoon the last two days. He now LOVES to have his back done. I am so fast with the compressions now and he just loves that last "squish". He belly laughs and you can just see the release when you do it. He still mushes for a bit and then gets up and goes back to doing whatever. It is kind of funny, but he staggers a bit when he gets up now. He always has a songfest as well. lol

There are just so many things happening and it has all come about since we began Wilbarger. I know we are supposed to do it intensely for only 2 weeks and then begin to pull back, but I wonder how that will work in the long run as we are seeing so much coming out of this. I think I will call our OT today and give her an update as I know she was worried about his intense reaction to it when we began.

Right now, I am a huge fan of this (mind you, I do not think we have gone throught that rough adjustment stage she warned me about yet) and am guarding that brush as if it were my lifeline.

That is awesome!! I am not familiar with any of this. What exactly is "brushing" ? This is the technique working on the SI?

That is awesome!! I am not familiar with any of this. What exactly is "brushing" ? This is the technique working on the SI?

Yes, it is working on dealing with Iain's sensory issues. The idea is to "reset" his nervous system through a protocol of brushing with a silicone surgical brush in a set pattern and then following up with joint compressions, also in a set pattern. The brushing floods his system with information and then the compressions help to relax him and reset him again. We are doing this through therapy with our OT. Once we get this straightened out the plan is to work on specifics such as his oral aversion, etc. so this is a stepping stone to his other goals.

It is to help him deal with his sensory needs and to bring about behaviour changes such as:

-increase focus and attention
-easier transitions
- decreased discomfort during tactile activities such as dressing, washing, hair brushing…
-a more calm approach to coping in busy environments
- enhance self-regulation
-improved sleep
-improved eating habits (increase repertoire of foods)
- less defensive/anxious/ overwhelmed/ controlling…
- decreased frustration
- improved organization
- less irritable
- more appropriate interactions with people
- less rigid behavior….

We have also noticed his need for heavy work has decreased as has his pacing/running, thus definately helping him with self regulation.

We are still new to this, but OMGosh what a difference already! It began on day one and is still continuing. I am praying this will continue to be a success.

My bf's son is 4 and he has everything you just described in Iain. She's in denial though. Her dh actually had a vasectomy recently b/c they think their son is just the most wild child and can't imagine having another one. I have been around him a lot and it's just so odd to hear you mention some of the things like how Iain would just scream instaed of helping you get something. Her son's hair is super long because he will not get a haircut. He was over the other day and quite aggressive with Sam b/c he didn't want Sam touching him, his toys (which were Sams), or is territory. He yelled and hit Sam and it was something for sure. When I mentioned it to her she was like no nothings wrong he's just high strung. The thing is he had surgery at 2 days old b/c of a HUGE hemangeloia that jeapordized his keeping his arm. He gets speech and OT (I think) but she does thinks by catering to him he will get over it. I have learned a lot by being on here about SI but before and to most people her reactions to him make him seem like just a highly unruly child. I can't help but think they are missing something and his behavior is not "bad"

My bf's son is 4 and he has everything you just described in Iain. She's in denial though. Her dh actually had a vasectomy recently b/c they think their son is just the most wild child and can't imagine having another one. I have been around him a lot and it's just so odd to hear you mention some of the things like how Iain would just scream instaed of helping you get something. Her son's hair is super long because he will not get a haircut. He was over the other day and quite aggressive with Sam b/c he didn't want Sam touching him, his toys (which were Sams), or is territory. He yelled and hit Sam and it was something for sure. When I mentioned it to her she was like no nothings wrong he's just high strung. The thing is he had surgery at 2 days old b/c of a HUGE hemangeloia that jeapordized his keeping his arm. He gets speech and OT (I think) but she does thinks by catering to him he will get over it. I have learned a lot by being on here about SI but before and to most people her reactions to him make him seem like just a highly unruly child. I can't help but think they are missing something and his behavior is not "bad"

Has your friend had him screened by a developmental pediatrcian? Since he is in OT and speech I would imagine that they would take a look at his behaviour and sensory needs and suggest having him screened. Having said that, I do also know we are way early for diagnosis with Iain as typically here they do not seem to catch PDD NOS until they are age 5 or more. I would tell your friend to look into it and let them know it can really help to get a diagnosis (even if it just turns out to be straight behavioural) as you can get the appropriate help. Our relief is immeasurable. Ask her if the OT mentioned Wilbarger. It is not for everybody, though and your friends OT would be the best judge for this.

Funny you mention hair cuts as I told the OT Iain is overdue to have one since he is begining to resemble cousin "It" from the Addams family and she told me to wait it out until we have a few weeks of Wilbarger under our belt. He has only had two haircuts in his life thus far and for good reason. :hairpull:

Iain is so severely delayed in speech and language that his frustration has been off the charts. His PDD NOS has prevented him from developing coping mechanisms such as non-verbal communication as we saw last night when he "asked" me to help him get his cars. It is a huge breakthrough for him.

Many parents are in denial when their child has developmental issues. We were for a time and put it down to his lack of nutrition, poor start, etc. and yet we still knew something was going on. Most times I look at him and do not see the PDD NOS as it is a part of him and we have pretty much accepted it. Through therapy, we are moving forward and I can see my little fella as the perfect little Iain he is.

Talk to your friend and tell her it never hurts to check things out.

Leigh I am so happy it is working out for you. I hope it continues.

This is so great Leigh!!! So do you think he can feel the difference in himself and so he'll request the brushing then?

Leigh,

I am so elated to read this post!!!

We tried this with Allie, but saw no difference at all. However, she transitions just fine and doesn't mind change in routines, etc. She also does not do the shrieiking that you describe. I think they wanted us to try it to help with her feeding, but no such luck!

Robynne would love to read this post, and I bet she would want Lesley to read it and try it on Catherine!!!! Maybe you can tell her about it? I have read such positive things about the protocol, that's why we tried it with Allie. Unfortuantely, they say if you don't see results in 2 weeks, then it won't work, so we quit.

In any event, I can see how excited you are to have Iain communicating with you to get his cars! That is awesome!!!

Leigh, that's AWESOME! That's what we've been doing in OT, too! Less of the brushing at home, she still hates it, but the joint compressions are magic, aren't they?!?!?!

So glad to come back and see a good post from you!!!:hug:

Leigh, my heart is singing for Iain! What a tremendous step forward! I can feel the excitement in your post. I am so thankful that you are finding the routine that works for Iain. I am certain there are calm carefree days in your future!

Thanks, everyone. We are elated. It has been such a great change and I am so hoping we can start taking some things for granted again instead of developing a migrane each time we do something with him.

My OT just called to check up on him as she was worried about his initial reaction and found it to be "scary". :hairpull: She is so astounded at how he has responded and mentioned again how gelatinous he was after she did it on him the first time (she has hoped he was like that because he was sick, not because he was so sensitive to it). Since we have pulled back a bit all we have is a bit of jello legs and one happy Iain, so we are LOOKING GOOD! I told her some of the changes and she is also thrilled. She thinks that instead of stopping in 2 weeks we will pull back and continue for a bit and perhaps see if Iain will be self regulating for this. We go to see her on July 12th now and she just informed me that my SLP is looking for me (they work side by side lol).

Debbie, the hope is that Iain will end up requesting it when he needs it as she finds he does self regulate already by doing heavy work, pacing, climbing, running, etc. It is his coping mechanism. Since he seems to be liking this so much he may end up "requesting" it in addition to his deep massage requests. I sure hope so and we have seen him ask for it once already and with words, no less! I know he feels different, much more relaxed when we do it. You can literally see the tension drain from him. Our OT says it takes away his "fight or flight" (adrenaline) response he works on. I even know when it is most effective on him as he is most open minded to it in the morning and by the end of day after loads of stimulation he gets sort of "energized" by it. It is fascinating to see, especially the patterns which are emerging. I asked her WHY it works and she says they have no idea. lol Good to know and I am willing to go on blind faith here, which is very unlike me.

Christyn, I have already told Lesley about this and she has apparently boxed Catherine and she is being shipped to me as we speak. *waits for doorbell ring and Purolator drop off* :haha: I have no doubt that Catherine would benefit from this, too and I trust Lesley to make her own judgement on this as every child is different. Right now, I am a convert! And I would hope that it would work for others as well as it has us, thus far.

Maybe I should let Robynne know how it has affected Iain. I know she loves Wilbarger, too!

I do wonder what the difference is and why it does not work for everybody. :( Why did it not work for KC and Aliie? And why did we see such a difference literally immediately with Iain? I have no idea on that and I wish it had of worked for you both, too. Maybe try it again in the future? I asked my OT today why on earth we were not told to do this a year ago and she does not know. Then again, we were not with her back then and hindsight is always 20-20. Who knows, maybe we would not have had the success we are seeing right now as a year ago we had so much else going on.

I will keep you updated on how things are going with this. It should be interesting to see how he does today after daycare as he has now missed a few sessions. **biting fingernails to the knuckles**

WOW Leigh, what a change in such a short time, I am crossing everything for you that it continues so well.

This is a new thing to me too, I know that KC was doing it, but not really sure what it was. Would this be considered an alternative therapy? Like how chiro aligns them? Or more medical based with the nerve impulses etc? (sorry if that is a really dumb question, I really am wondering)

Maybe Iain is doing so well because he is such a touch monger in the first place, I know you say you always have to rub and massage him, cause he loves it so much.

Keep us updated!

How exciting! I am so glad it is working so well for him. It must be wonderful to be able to enjoy your little boy and not have to be all stressed out from the constant battles.