[Hopester]

My daughter, who is 8, has SPD. The main manifestation is severe tactile defensiveness and oral aversions. There have been times when she couldn't even wear clothes, or the carpet beneath her feet, or furniture she was sitting on, was too much for her to bear. It's much better now. She can wear clothes, but only the same type of pants/shirts. We have multiple pairs. On days when we switch to a clean pair, it's very difficult for her.

She is currently in speech for the oral aversions. Her diet is *very* limited. Fortunately, most of it is healthy. PB&J, apples, bananas, milk....right now that's about it. We've tried gf/cf diet, but obviously that's near impossible with the variety of foods she eats.

We have tried numerous therapies...OT, interactive metronome, NAET, listening therapy, brushing, speech, vitamins, minerals, fish oils... I'm always looking or the next option. I'm also always looking for others who deal with the same/similar issues.

I forgot, we recently discovered that she has some discrepancies when it comes to expressing abstract language. In abstract language, she functions a little lower than her own age. Otherwise, she functions up to 5 years older than she actually is. That discrepancy causes major issues with frustration.

Anyway, I would love to talk to anyone dealing with this. Bounce ideas off of each other, commiserate...debrief.

 

[KimPM]

My DS has oral and tactile aversion, but he's only 3.3 years old. We started properly addressing them a little before age 2 with a speech therapist who also did feeding therapy. (Before that, he was in Early Intervention for about a year, and it was really no help at all.) I've been doing a lot of OT type stuff with him myself. It has tremendously helped.

I've also discovered that DHA/EPA supplement seems to help a little (but you say you've already done the fish oil). Whenever he gets sick, though, the sensitivities come back with a vengeance. So far, when he recovers the sensitivities dull back down. It seems his level of sensitivity varies each day, anyway. Getting enough sleep really helps, too. Lots of activity also helps. Time spent outside in the sun also helps.

It seems that the sensitivity in what he touches (hands and feet) is directly related to that in his mouth. Working with him to encourage him to try touching different textures, and working up to those he doesn't like, it seems to have helped him open up a bit on his eating. He's still not real great about trying new foods, but occasionally when he's having a good, low-sensitivity day, he surprises me and wants to try something new.

The brushing has helped desensitize him as well.

 

[homeschoolingmama]

What is brushing? I have SPD (tactile) and don't know much about it. I have a very hard time with touch. I can touch but things can't touch me lightly. . . including people. It is very hard to nurse or read with my children. I would love to desensitize myself!

 

[DaughterOfKali]

My son is in Feeding Therapy (through a SPL therapist). It's not helping much yet but I'm hopeful.

Ds is very sensory defensive. I wish I had some answers because he definitely needs extra help in school and in public.

 

[KimPM]

Quote:

Originally Posted by homeschoolingmama What is brushing? I have SPD (tactile) and don't know much about it. I have a very hard time with touch. I can touch but things can't touch me lightly. . . including people. It is very hard to nurse or read with my children. I would love to desensitize myself!

therapy brush:
http://www.beyondplay.com/ITEMS/E078.HTM
(you don't really need the handle, unless you want one)

it feels good! it's got super-soft plastic bristles and you brush your skin with it. you push down firmly into the skin, so it's not ticklish at all, yet since the brush is so soft it doesn't hurt. there are specific ways to do this wilbarger brushing protocol.

http://www.pbbkids.com/the_wilbarger...g_protocol.htm

It may help to have one visit with an OT who can show you how to do it.

 

[Hopester]

Quote:

Originally Posted by KimPM My DS has oral and tactile aversion, but he's only 3.3 years old. We started properly addressing them a little before age 2 with a speech therapist who also did feeding therapy. (Before that, he was in Early Intervention for about a year, and it was really no help at all.) I've been doing a lot of OT type stuff with him myself. It has tremendously helped. I've also discovered that DHA/EPA supplement seems to help a little (but you say you've already done the fish oil). Whenever he gets sick, though, the sensitivities come back with a vengeance. So far, when he recovers the sensitivities dull back down. It seems his level of sensitivity varies each day, anyway. Getting enough sleep really helps, too. Lots of activity also helps. Time spent outside in the sun also helps. It seems that the sensitivity in what he touches (hands and feet) is directly related to that in his mouth. Working with him to encourage him to try touching different textures, and working up to those he doesn't like, it seems to have helped him open up a bit on his eating. He's still not real great about trying new foods, but occasionally when he's having a good, low-sensitivity day, he surprises me and wants to try something new. The brushing has helped desensitize him as well.

I'm really glad you were able to get early intervention. I tried and tried w/my daughter, but everyone said it was just a phase or blamed it on bad parenting. It was beyond frustrating!

I do agree with you that sleep is so important. Whenever she isn't getting good sleep, things are bad! When things are bad, we do use melatonin and that seems to help. Now that we can be outside more, she is doing much better! And yes, the fish oil is DHA/EPA. I actually very surprised we could find anything to get down her!

For some reason, spring is really difficult. We haven't been able to pinpoint it yet. Is it allergies? A growth spurt? Change of season? Or maybe all of the above.

Yes, the feeding therapy is long, tedious, and frustrating. We are seeing some improvements. Not a lot, but some!

I'm glad OT is helping so much. It's really hit or miss with my daughter. Brushing did almost nothing. Swinging seems to help the most.

Have you been given a prognosis for your son? Since he's gotten help early, I bet the future looks good for him.

 

[Hopester]

Quote:

Originally Posted by homeschoolingmama What is brushing? I have SPD (tactile) and don't know much about it. I have a very hard time with touch. I can touch but things can't touch me lightly. . . including people. It is very hard to nurse or read with my children. I would love to desensitize myself!

I'm so sorry you've had to deal with this! Have you always known you were sensitive in this way? Have you found coping mechanisms? I could ask you a million questions b/c I've always wanted to talk to someone older who has dealt w/this to give me advice on how to best handle my daughter.

My husband has SPD too. Learning to deal has not been easy for him in the least. Unfortunately, we haven't been able to find any therapy for adults. He liked brushing, but it's not like I can come to his work every 2 hours and brush him.

I think hypnotherapy has the potential of really helping. Have you tried that? What about massage?

 

[Hopester]

Quote:

Originally Posted by DaughterOfKali My son is in Feeding Therapy (through a SPL therapist). It's not helping much yet but I'm hopeful. Ds is very sensory defensive. I wish I had some answers because he definitely needs extra help in school and in public.

FT is long and tedious and the results come slowly for sure. Mealtimes can be soooooooo frustrating! How long has he been in FT? I'm hopeful too. As long as we stick with it, I know the benefits will come.

We had to take dd out of school and homeschool. It was just too much for her. She would hold it together at school and then have complete meltdowns at home. She even ran away from school twice. Fortunately we lived right behind the school and she just came right home. It was a nightmare! I'm just glad we have the opportunity to be able to homeschool.

Is the school helping you at all? Do you have an official diagnosis? We had the hardest time getting help from the school. We almost filed under the ADA, but decided it just wasn't worth it. I can't wait for SPD to be in the DMV.

 

[KimPM]

Quote:

Originally Posted by Hopester I'm really glad you were able to get early intervention. I tried and tried w/my daughter, but everyone said it was just a phase or blamed it on bad parenting. It was beyond frustrating!

Oh wow, did the screening therapists tell you that? I can imagine just how frustrating it would be...imagining if they told me that about my DS. Oh, but I was often told that it was the extended breastfeeding that was causing the problem

.

Quote:

Originally Posted by Hopester For some reason, spring is really difficult. We haven't been able to pinpoint it yet. Is it allergies? A growth spurt? Change of season? Or maybe all of the above.

Have you had her tested for allergies and intolerances? My DS has not been tested, but I know of a handful of foods that he reacts to so far. Hmm, is she eating anything new since spring has sprung?

Quote:

Originally Posted by Hopester Yes, the feeding therapy is long, tedious, and frustrating. We are seeing some improvements. Not a lot, but some!

Keep with it...it's funny how it worked for my DS, very slow at first, wondering if it was doing any good, then a little progress, then a lot of progress.

Quote:

Originally Posted by Hopester I'm glad OT is helping so much. It's really hit or miss with my daughter. Brushing did almost nothing. Swinging seems to help the most.

Oh yes, I forgot that one...swinging really really calms him down. At one point, it used to be the only way to get him to sleep. He also has a little mini trampoline that he jumps on. That seems to help him get some of that nervous energy out.

I've noticed with my DS, that everything -but everything- works the same way:
new concept introduced => sensory overload and rejection
...but if I work toward the new concept ever.so.painfully.slowly we eventually get there. And I have to keep a certain amount of "traction" on him toward the new thing. I certainly can't expect him to ever just pick up those new things on his own. It seems like each new thing is such a huge hurdle for him that he just doesn't even try on his own.

I was wondering if your DD also has some level of anxiety. My DS seems to have a lot of that, likely because he is so sensitive. Though I wouldn't say it's anxiety about nothing...it just seems that his anxiety is out of proportion to the anxiety-producing stimulus.

Quote:

Originally Posted by Hopester Have you been given a prognosis for your son? Since he's gotten help early, I bet the future looks good for him.

Actually I haven't gotten an official prognosis for my DS. Not sure where I'd get that

. But I think he'd probably not be eating solid food at all if I hadn't found the great SLP that helped him. So even though his diet is still rather limited, I think it's got perhaps just enough variety for him to get by. And I do supplement him as well, otherwise the diet alone would definitely not be enough.

As far as schooling, it's a good thing I was planning on homeschooling him, because I don't think he'd work well at all in a typical school setting....for at least 10 different reasons (maybe more).

 

[katsam]

Therapeutic listening has helped my son immensely. He is almost five, and now I can say was very tactile defensive. He still is a little, but the difference has really been night and day. I can tell when he is having a bad day though, because those little tactile things do start to bother him again.

 

[DaughterOfKali]

Quote:

Originally Posted by Hopester How long has he been in FT?

This is his second round. It's only been a few months so far. Once a week.