I need to hear some success stories for kids with SI

[MmaBasotho]

Okay, here's the deal.

I'm so relieved these days that signing is increasing my ability to communicate with Paula that I'm so tempted to back off of getting OT for her (through ECI). She has sensory issues mainly revolving around:
1) She does NOT like to go to sleep, has a hard time staying asleep. I give her melatonin and it's still a big struggle.
2) Oral stim issues: grinding teeth, biting nails, eating all sorts of non-food items
3) Toe walking
4) Tactile stuff like she doesn't like loose cloth on her legs or feet - drives her crazy

There might be more but I learn to forget about whatever's not an issue at the moment!

Anyway, please remind me why OT can help! Have you all had success with brushing and other OT protocols? I need to see that this is going to be worth it - and I know it's going to be pretty intense for a while. Thanks, everyone!

[Krista]

Anika doesn't have the same SI issues as Paula, but OT has certainly helped her (though we've seemed to have hit a plateau in her progress). Anika's issues are that she has oral aversion (eats via g-tube), she is hyposensitive in her upper extremities (the usualy, doesn't like anything sticking to her hands- playdough, shaving cream, etc.- though this has gotten a LOT better), she is hypOsensitivein her lower extremities (she can walk on black top in 100 degree weather and not realize she's burning her feet, she can't feel when sheneeds to go to the bathroom or even when she's wet) and it's really difficult for her to "come back" once she's over stimulated. Brushing and joint compressions really helped her hyersensitivities in her upper extremities. That's the only progression though.

[ilovemysonforever2002]

hello my son went though some of the things that you both went though with your kids and yes an ot will be good for her
my did have an ot pt and a speech lady all come every week
and they did joint with his arms and legs and took there thum or figher and put on his cheeck because he was griding his teeth alot and brush him on his body and he sat there and got it done when he alot younger he all ways took off his cloth even his diaper and the first 10 months of his life he couldnt keep his milk down and the docotr or the er wouldnt do any thing but the wic did the nurse there at the wic office call him in for a new doctor and she put on new milk and he done real good with it and didnt have 2% milk until he was 2 years old and he couldnt talk or any thing but now hes 3 years old and 3 months he saying wroks every day he said email and few other words and he gets speech in school 5 days a week
april /mark jr

[MmaBasotho]

It's good to hear from other moms who've had the same stuff come up with their kids. I think I'm a little intimidated by the thought of having ST, OT and a DT for signing all in one week. The OT already told me once we start I'll be brushing Paula every two hours... Is this how you did it?

My SIL has worked for a ped OT for three years and seen a lot of kids with sensory issues. She says brushing is great and it will probably really help Paula. I hope so and I'm still scared of having to do it every two hours. Maybe I should just think of it as breastfeeding! You know, those nursing sessions can take a while and used to come along at least every two hours!

Thanks!

Juliet

[momgael]

My nine year old had/has sensory issues. He had an oral aversions (resulting in low oral tone), varying hypo-hypersensitivity in feet, mouth and, I guess everywhere. Won't give you the long laundry list of manifestations.

However, we had a consulation with an OT about every six weeks. We would bring Alex and our list of "Help us, please!" and she would prepare a list of things to help us during the day....and very, very long nights. For sleeping, we were made a weighted blanket. It was not a miracle cure, but the length of sleep did increase. She also gave us fun games to play with Alex before bed to help regulate his nervous system for sleep.

The brushing helped and was only temporary. I have to admit that we did not do it every 2 hours. My husband was in grad school, I was working from home, etc. etc. However, we did brush as part of our wake up and transition routines. Wake up and brush before putting those clothes on (always a battle), Brush before going out into any group activity (those were always an adventure), brush before nap, after bath. That was about all we got in, but it helped.

I'll wrap up this very long post by saying that Alex is in a 4th grade classroom for gifted children and eats food. He is still picky and we just convinced him last year not to tuck in every shirt, sweater or sweatshirt....but these are minor things.

Nickie, NC

[lovemy6sweeties]

and a lot of them have resolved themselves through PT, OT, and ST. He is still a very picky eater, and has a hard time with meats and stuff because he is both hypo and hyper sensitive in his mouth and has lower oral tone. My OT wanted to do the brushing thing when he was smaller, but Brady is the youngest of 6, and I just couldn't do it. We have a private OT now and she recommended it again, because when Brady gets all excited he stiffens up his arms and makes noises. Signing has helped with that because we say to him - oohhh - you're so excited, and he signs it and then goes on to other things. It made me question whether he had autism, but every professional I've asked has said no, that he is far too social and that it is just a sensory thing..... Anyway - I digress (I often do) - our current OT says we can just brush him in the morning, before we go to stressful or busy activities, then in the evening. It's such a committment, and not that I don't want to do everything I can for Brady, it's a matter of what I actually CAN do. So - we are trying that, and it seems to help some.

OT has been great for Brady's fine motor skills and self-help skills. We also used massage and rubbing different textures on Brady's feet to get him to stand on the carpet, crawl and such, since he had big texture issues like that when he was a baby.

Don't know if this helps or not :)

[Krista]

I agree, brushing every 2 hours is a big commitment. When Anika's OT started the brushing routines- I had a newborn who was attached to the breast 24/7, lol. We all know that each child is unique and a 2 hour brushing schedule couldn't possibly fit every child and every family. We usually brushed between activities and transitions too. That worked really well, but she also had a pacifier at the time that worked better for the screaming/stiffening/sleeping problems. We did the brushing every 2 hours (sometimes every 20 minutes) to get rid of the pacifier about 8 months ago. Somehow though, we lost our brush, and I never asked for a new one- and we've found other ways to help transition her. If those stop working, I'll get another one.
OH! The joint compressions still help before sleeping- I wish something would help with eating :/

[sandys148]

Ladies,

I am new to the world of SI and it's therapy. I have been using some techniques (spinning and swinging to ease transitions ~ which have not been working), but what is brushing in the therapy sense? What kind of brush do you use? Do you brush all over or in target spots? Hard or soft or a mixture?

Thanks a bunch!

[aligreat]

With Cassia we brush her with many different textures. We have a veggie brush, hair brush, and we even use both sides of my breast pads--one side is nylon mesh to keep leaking milk away from my skin, and the other is terry cloth to absorb the milk. I was instructed to do this each time I change her diaper. I brush her arms, legs, and even her tummy (but many kids don't like their tummy brushed.)

Cassia eats with a g-tube, but she has recently started taking food by mouth with the help of her OT. She takes up to 40% of her calories by mouth, but some days it is less. She doesn't have any oral aversions, which is unusual for a tube fed baby, but her OT says that she has her twin sister (and mom) to thank for that. Whenever I gave Alexandria a cracker I would give one to Cassia as well. If I was spoon feeding Alexandria, I would give Cassia a spoon to play with, too. Alexandria's favorite sign is "Brush Teeth," and she loves playing with her toothbrush. At the same time I was also giving Cassia a toothbrush, and so rather than toothbrushing time being a wrestling match it is play time. This has allowed Cassia to explore these items in her own way and in her own time.

Just my thoughts on the matter...

-AG

[Krista]

Ladies,

I am new to the world of SI and it's therapy. I have been using some techniques (spinning and swinging to ease transitions ~ which have not been working), but what is brushing in the therapy sense? What kind of brush do you use? Do you brush all over or in target spots? Hard or soft or a mixture?

Thanks a bunch!


We used a brush that our OT gave us. It's plastic with long soft bristles. We do a mixtre of hard and soft brushing all along her arms and legs. She would never let me brush her tummy. Anika can't stand vestibular motion, so the swining/spinning thing would never work here either.

[momgael]

Usually OT's recommend surgical brushes and to brush the whole body with the exception of the tummy. Finish with joint compressions. Body massaging works well, too. It doesn't have to be hard, just enough to regulate the nervous system providing the input needed.

Bedtime activities we used (which may not work for every child with SI) included baths. Brushing (with towel or surgical brush) Rolling both boys up in a blanket and dragging them around the family room....something we nick named the marshmallow squish (take a pillow over torso and apply soft pressure). The weighted blanket completed the routine. Ours was about 6 pounds.

For eating, we started by rubbing the gums and insides of the cheeks with firm (not hard though) pressure and finishing with joint compression for the jaw (have a therapist show you how to do this.) We started by offering a tiny bit of all the meal choices (making sure something was desirable)....step one was touching each food before getting refills on the desirable food...step two was smelling it...step three was touching it with the tongue....step four was chewing and attempting to swallow(spitting out was allowed)...step five (I thought we would never get here) is chewing and swallowing all foods! It took us until age 8 to get to step five. But well worth the patience.

Nickie, NC

[aligreat]

Cassia has times when she wants "more of" everything--to be stimulated, and she has other times where she doesn't want to be touched--she withdraws.

During her "more of" times she loves to be scratched and tickled all over. She will even sit on the floor and fold herself in half, exposing all of her back, to tell us it is time to scratch her back. If we don't get the hint she will move her little hands to her lower back and start scratching herself. She can only get them to about the top of her diaper, and it is so cute.

Sometimes during her "less of" times she still needs to be comforted. It is as if she wants to be held but not touched at the same time. During these times she loves it if we blow on her or have a fan blowing on her. I have even used a little hand held pump for inflating pool toys. We bought a little fan that fits in my purse; it keeps me from getting dizzy from blowing on her again and again.

[MmaBasotho]

I'm wondering about this. Paula used to eat anything, until a few months ago now, I guess. Gradually she started rejecting more foods, foods she had recently enjoyed. Now I feel like the foods I can consistently get her to eat are smoked sausages and plain pasta. She will take a couple of bites of another food if I'm lucky, but then she doesn't want any more.

When those of you with picky eaters talk about your picky eaters, you mean they won't try anything, right? Or is it something like this?

[ajberchielli]

Okay, here's the deal.
1) She does NOT like to go to sleep, has a hard time staying asleep. I give her melatonin and it's still a big struggle.
4) Tactile stuff like she doesn't like loose cloth on her legs or feet - drives her crazy!
Don't stop OT!!!! Especially if it's getting paid for by Early intervention. As for sleeping have you tried a weighted blanket? I just got our EI to vendor me to order one. Here is the website and more info on weighted blankets:
http://weightedblanket.net/
I have heard they help many kids sleep.



I need to see that this is going to be worth it - and I know it's going to be pretty intense for a while. Thanks, everyone!

I don't use the brushing technique yet on my son...we just started OT 2 weeks ago. But I have seen ++++ results on other children who do the brushing tecnique. It does take time to have the body register all this new imput.

Good Luck!!!!

[c01dunlap]

I'm wondering about this. Paula used to eat anything, until a few months ago now, I guess. Gradually she started rejecting more foods, foods she had recently enjoyed. Now I feel like the foods I can consistently get her to eat are smoked sausages and plain pasta. She will take a couple of bites of another food if I'm lucky, but then she doesn't want any more.

When those of you with picky eaters talk about your picky eaters, you mean they won't try anything, right? Or is it something like this?

You might want to look at the "General Signing Time Discussion" thread entitled "anyone else have a picky eater?" too.

[fivezenuff]

My daughter is 4 (verbal apraxia, SI and a few other weird things...). She is going into her third year of therapy, but it wasn't until this past July that her private therapist told us about weighted blankets and some other pressure/sensory activities. And what a lifesaver they have been. The first night with her weighted blanket she slept through the WHOLE night !!! This is a child who pretty much hadn't slept since birth. Had only slept through the night three times in her whole 3years and 10 months of life! We also started rolling her on a large therapy ball and I cannot believe the change. She even requests to be rolled now when she feels the need. We've incorporated it into her speech therapy as it seems to bring out more verbalization. so weird, but true. I guess it's all the sensory feedback she gets from it. Looking back on past events it all makes sense. Just wish I'd learned about it earlier. Order a catalog from ablations (?) online (probably google it, not sure of the website right now). They are expensive, but you can get all kinds of ideas from it, and I've found most of the stuff in it elsewhere for cheaper or made it.
Just a few thoughts, but I'm definately a believer,... she is so different from her older siblings.
:) RaKel (mom to 5 kids)

[MmaBasotho]

I'm so encouraged after hearing everyone's success stories of SI/OT. I have to say I'm intrigued that some people mention their child actually asks for the input. We have done foot massage with Paula and given her all kinds of safe things to chew on, but she doesn't ask for these things. I actually stopped the foot massage because she positively hates it. It did help with the toe walking, though.

I think once we get going with an OT and have regular meetings with her, we'll probably come up with things that Paula actually enjoys and help her. I'm interested in trying the weighted blankets.

Thanks so much!

Juliet

[ilovemysonforever2002]

hello i was told to use the brush on my 3 times a day not every two hours my son loved getting his body brush that he put out his arm to get brush and pull up his shirt or something
now since he in school and saying some words i dont use the brush on him any more hes getting better
april /mark jr

QUOTE=MmaBasotho]It's good to hear from other moms who've had the same stuff come up with their kids. I think I'm a little intimidated by the thought of having ST, OT and a DT for signing all in one week. The OT already told me once we start I'll be brushing Paula every two hours... Is this how you did it?

My SIL has worked for a ped OT for three years and seen a lot of kids with sensory issues. She says brushing is great and it will probably really help Paula. I hope so and I'm still scared of having to do it every two hours. Maybe I should just think of it as breastfeeding! You know, those nursing sessions can take a while and used to come along at least every two hours!

Thanks!

Juliet[/QUOTE]

[ilovemysonforever2002]

hello i got my brush for my son at the dollar general store for 2 dollars and its a soft brush and i use it to brush his arms legs front and back parts his legs and arms stomack and his back he loved it yes spinning swining and jumping on trampling and getting a sit and spin and push them on it around and helps something in there head that what i was told i have yahoo messenger if any one whats to get a hold of me its ilovemysonforever2002@yahoo.com


Ladies,

I am new to the world of SI and it's therapy. I have been using some techniques (spinning and swinging to ease transitions ~ which have not been working), but what is brushing in the therapy sense? What kind of brush do you use? Do you brush all over or in target spots? Hard or soft or a mixture?

Thanks a bunch!

[amiller]

With Anyka, she does not specifically have SI but because her palate was man-made, she had major sensory issues in her mouth as she adjutsted to haing a palate and then as the nerve endings in her palate grew in and became sensory (the sci-fi aspect of all this still freaks me out!). We used one of those vibrating teethers and let her chew on it at her own pace, encouraging her to use it - more forcefully at first, then gradually she took over and used it. Letting it go at her own pace was hard - we wanted her used to stuff in her mouth NOW - but she did do it, and we just accepted that she was going to eat mostly yogurt and Pediasure for a while - then we introduced other foods/textures as supplements to her liquid diet, and now she eats everything except very hard things (crunchy like chicken fingers) and tough meats (beef, pork). Hot dogs and chicken were major accomplishments but we got there!