The Wilbarger Protocol For Sensory Defensiveness
breezy0629
member
I know this has been discussed before. I feel like I even commented on the post, but via search I can't find it.
OT wants us to try the Wilbarger Brushing Protocol now. DS has had a lot of extra anxiety recently. His biggest thing is acting out when it's time to change clothes, get dressed, or leave the house. I just can't remember it ever being THIS difficult to get him to attend to me calling his name or put on a shirt or just WALK OUT THE DOOR!!! The OT has also called my attention to how he hugs, claps, and just how he moves to avoid having to touch or be touched in certain ways. I do agree with her.
I hit the wall today - just lost it (on the inside) when I got a call from a lady at that exact moment who has a child, 8, with autism and we had a really good chat. It calmed me down enough to get his clothes on, head out, and make it to OT. Thank GOD!!!
The friend mentioned the brushing, and then the OT mentioned it. I just think it's time to try it. It really can't hurt anything - but if it can bring down his notch of anxiety just a little.... I'll go for it.
So, here's my question to anyone who has tried it (or at least knows anything about it).... We've got a few things right now that might warrant me waiting to start. It is every 2 hours for 2 weeks. When do you think you would start, given the circumstances?
#1. DS tracks out from his first quarter Friday. Thus, Monday his world changes for 3 weeks.
#2. DS is going to stay with grandma for 4 days end of next week (mid-protocol if I start now). I do think she'd be on board to do this, though I haven't asked her yet.
#3. DS has been potty 'training', but it's a long time before he's going to be 'trained'. He's going about 1 hour between potty visits & I DO believe this is a source of anxiety for him as well.
#4. We have been doing it every 2 hours today since OT... he really seemed to like it, but he has 2 days of school left and with only 2 days left, I'd be out of my mind to try and get them to do this tomorrow and friday.
Re: The Wilbarger Protocol For Sensory Defensiveness
Auntie --I hear a lot of what you're saying. Some stuff is TOO CrAzY to try, but this one is certainly one that I think for the little effort it will take (since he loves it) it's worth a try.
If I hadn't participated in some of the calming techniques re: sensory diet, I would have NEVER understood how and why they work. It's definitely NOT common sense stuff & certainly does not work for every child. But Heavy work, obstacle courses, joint compressions, blankets, swings, crash pads, etc... all have worked wonders with my boy. Now, I can say that there are periods of time that I check-out and don't do this stuff. Now is probably a time that Im doing that more - but the truth is that I just don't have as much time WITH him to be doing all this stuff anymore.
So, that's where I am with the brushing. It feels GOOD to me, and I imagine the stimulation on the skin (the largest organ in the body) increasing blood flow would generate a calming effect (whether thats why they think it works or not). SO, as crazy as it may seem...I really think it's time to try it.
Our OT just flat out said it is anxiety. I agree with her. I mean, of course she went with what she knows and said that she thinks some of the tactile defensiveness is fueling it.... but even as I mentioned above... the little guy has a lot going on.
There won't be a perfect time, huh?? I guess I'll just see if MIL will do it and if she will, I'll just start Sat.
Hi all,
I'm lurking here and haven't posted here before. I don't have a child with ASD but have a nephew that we are raising with PDD-NOS after my sister passed. I'm also an occupational therapist licensed in the state of NY. I'm not sure if these thoughts are going to be helpful, if not just ignore me but here are my thoughts after working with children on the spectrum for more than 10 years.
A child on the spectrum typcially needs a sense of stability and a sense of routine. Otherwise anxiety presents itself, as many of you well know. So the brushing provides an activity that "feels good", gives the child a sense of calmness and most importantly is Routine!! It is felt that children on the spectrum have difficulties understanding sensory input, for example, a child might feel the light brush of clothing as uncomfortable. A normal functioning sensory system can take those light touches and eventually you don't feel them any more. Think about wearing clothing, you eventually don't feel the clothes against your skin any longer. The brushing actually triggers several sensory endings in the skin in a ritualistic pattern making those light touches more bareable. Or another example, you are in a restaurant and you can "tune out" all the other voices eventually even though it might have been loud when you first arrived. A child with ASD struggles with this. BTW my nephew HATES brushing and i can't bring them into the house so I keep them away.
As for "heavy work" or proprioceptive input, It has been shown to decrease the child's need to seek out input by banging into objects, jumping or climbing on high objects etc. Giving the child these opportunities on a continuous basis tends to show an increase in attention, especially during group activities.
As for the "sensory diet", everyone has the need for sensory input. Therefore everyone seeks sensory stimulation. But children with ASD or related disorders tend to need sensory input on a more ritualistic basis and in a routine that they can understand (picture schedules work nice). Providing this tends to decrease the non-functional or dangerous sensory seeking activities that a child might do (ie. jumping off high places, spinning or self injurious behaviors).
Please remember that each kid is different and that you should NEVER push an activity on a child that they find uncomfortable or they don't like. I can tell you, it will NEVER work. But there are several different strategies out there (weighted vests, brushing, sensory diets etc). Good luck with the brushing!
TTC since 6/2003. m/c 9/14/03 8 weeks, 5 chemical pregnancies, mmc 6/04 12 weeks, Michael born sleeping 5/25/05 at 22weeks always our angel, fought ovarian cancer and won, m/c 4/06 5.2 weeks and 7/07 6.6 weeks,Our Miracle baby girl born 4/8/10,mc 12/18/11 at 5.3 weeks, BFP 10/26/12 dating u/s on 11/8/12 showing a strong heartbeat!EDD July 4,2013. RCS on 6/27. Baby boy in NICU for 8 long and scary days before he was able to come home. We are now a happy family of 4
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~~missyjg~~
Thank you for your input. I would like your thoughts on the issue of routines though.
Life is full of CHANGE. I do understand that DS needs routines *sometimes* and yes, when he is on a predictable routine or even a written routine that brings about a change, he does better. I CAN get him to immediately attend to what needs to be done - most of the time - which I think parallels what I would expect of typical 3 year olds. But, then how does he learn to interact with someone who doesn't do that for him?
In my experience, he get TOO dependent on the routine.It's like it FEEDS his anxiety in a way. An example is the written schedule. He understands better if I give him a list. So, I will write 1. eat lunch, 2. read 1 book, 3. get in the bed, 4. nap. So, when he is finished eating, he needs to erase.... and then all the way to getting in the bed - he wants to ERASE..... and you can see where this is headed.... the MOMENT he wakes up 'I NEED ERASER!!!' or else!
It just seems a little TOO supportive.
Our DT (no longer seeing her), our current OT, and speech all feel that our goal is to get him OUT of these routines... so when we can support him without - to do it that way.
I am really at a loss. He DOES have a lot more anxiety now. I think things are changing on him fairly often because I don't always go home after he gets out of school, or its not always the same time when he goes to bed, he doesnt always eat the same stuff. Maybe I am causing the anxiety by not giving him SOME of that stability. I can't decide what I hate worse...... all the routines driving his day and his addiction to it.... or all the inconsistency and anxiety.
The best answer I can come up with for myself is this: It's just hard. Ugh.
Your therapists are absolutely right in decreasing the routine and his dependency on routine. But what you need to do is watch for triggers in anxiety. Is it throughout the entire day or does it typically happen at more specific times during the day. I'm going to give you my personal experience with scheduling with my nephew. He is now 6 and in 1st grade and I took custody of him 4 years ago. After his PDD-NOS diagnosis, he could not function without his picture schedule. He'd become very upset and actually began to hit his head on the floor and scratch his arm raw if his routine changed. It sucked and I was a professional who couldn't seem to help him.
But I stepped back and looked at the situation clinically. What me and DH ended up doing is jotting down in a notebook when these severe issues in anxiety arose that we couldn't redirect. For my nephew, it was in the afternoons before dinner and just before bed. So we kept the picture schedule very vauge in the morning and afternoon "ie: a picture with morning routine, and a picture with a bus, etc". Then we made the pictures more indebth when he was having those issues with anxiety. We eventually were able to remove the morning routine pictures and just used pictures during the times that he had the most severe issues. As he got older, he was able to understand "you need a calming activity". We actually hung a swing and put a trampoline and a big air mattress/ball pit in our basement. It was a life saver! It gives him an alternate way to redirect his anxiety behavior that consistent but not a necessity.
He is now in first grade and he is no longer dependent on visual cues/picture schedules. He responds to verbal responses b/c he is now more mature and able to understand the "this...then... statements".
As for your written schedule, maybe you are pulling too fast. By his reactions, it's working for him and right now it's an anxiety relief for him. So try and figure out when his anxiety is the worst and attempt remove steps from the times that he is less dependent on them. But every child is different. Work closely with your speech/OT. And I've been there! It's aweful to see a child go through this but be persistent and you will figure it out. Your DH is most likely unable to voice his difficulties right now so watch his behavior before it gets to a point of major meltdowns etc.
I attempted to answer your questions but I know there are so many unknown's about this condition. I sincerely wish you the best of luck!
TTC since 6/2003. m/c 9/14/03 8 weeks, 5 chemical pregnancies, mmc 6/04 12 weeks, Michael born sleeping 5/25/05 at 22weeks always our angel, fought ovarian cancer and won, m/c 4/06 5.2 weeks and 7/07 6.6 weeks,Our Miracle baby girl born 4/8/10,mc 12/18/11 at 5.3 weeks, BFP 10/26/12 dating u/s on 11/8/12 showing a strong heartbeat!EDD July 4,2013. RCS on 6/27. Baby boy in NICU for 8 long and scary days before he was able to come home. We are now a happy family of 4
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Thanks.... I was merely looking for another opinion. It's always nice to hear how someone else did things. Thanks for that.
We are currently working on more visual schedules surrounding the potty (potty steps and washing hands) so he can be more independant with it. It is amazing how DIFFICULT it can be to just say "Pull your step stool out, now, turn on the water, get soap' ..... you know all the steps..... but then when I gave him little flaps to close as he does the PECS washing hands schedule, he is EXCITED to do it. I guess it's really freeing for him to be ABLE to do it on his own.
Thank you for your thoughts.