Sensory Integration Disorder Support Group

I don't know if it will help, my daughter doesn't have clothing sensitivity, but I read in one of the texts our child psychologist recommended that sometimes with older sufferers, mostly kids about our childrens' age and older, to let them pick out their own clothes to purchase and to shop second hand stores as the clothes are often softer than new ones. Bonus: they usually look just fine and they will save you some $$!

I can't imagine how frustrating it must be to have this issue constantly. I am overwhelmed by my daughter's outbursts at school, but they are not every day and not happening at home, where she is not overwhelmed by the chaos. My heart goes out to you and I commiserate with the lost feeling of not sure you can take all of this but knowing you have no choice. It breaks my heart to think of what my daughter goes through, how overwhelmed she is regularly. I am scared that she won't enjoy her life, no matter what I do. I don't want her to merely live or survive- I want her to thrive. I hope you find something that will help your daughter. We are about to start equine therapy here.

A book I am reading right now is shedding some light on things we can do at home, maybe it would help you so you don't have to get her out of her comfy clothes to go somewhere... It is " The Out-of-Sync Child has fun". Another thought: instead of going out to eat- start collecting order in menus... at least until things take an upswing. Maybe you could have the girls help you set up the table and pretend you are in a fancy restaurant. My older daughter is also affected my my younger daughters' reactions, not as much as yours, but I see where you are coming from, feeling bad for one because of the other and not knowing what to do to make it better.

My daughter sounds much like yours, we can't take her out to eat, we can't go bowling, skating, and alot of other things. My daughter is 4 and she was diagnosed at about 18 months when she wasn't walking, attempting to talk, and still choking on things she shouldn't have been.
I take her shopping at second hand stores she likes the clothes from there much better she calls it the "soft" store :) I don't buy ANY clothing for her that she has not seen and approved because it usually is a waste of money if i do, and she prefers soft sloed moccasins to hard soled shoes, they still protect her feet but they are not as restricting, she cant wear them in the rain or mud, but she would rather deal with the hard soled shoes than have "squishy feet"
We used brushing with her in the beginning and from what i remember things got worse before they got better, and my daughter responded better to "heavy work" and "deep pressure" than the brushing. Try rubbing her roughly briskly all over (like your trying to warm her up) before she gets dressed, or "wheel barrow walk" around the room, or (and this was a great help) suck yougert, pudding or applesauce through a straw, give her the cup and a regular straw instead of a spoon. Some other things that were recommended was pushing a box with books in it, or a big basket of laundry, rolling tight in a blanket and playing burrito, or mushing her between 2 couch cushions to be a sandwich, your daughter might be a bit old for " com'mon hunny lets play burrito" lol but the concept is the same :)
as to eating out we use the drive through and "picnic" at home inside or outside depending on the whether, and my husband and i take turns taking our other 5 children places she can't go so they don't always have to do what Sissy does. the book " The Good-enough's Get in Sinc" helped our younger children understand there sister better, but she does still disrupt there lives and the older ones think we like her better sometimes because of the attention she requires, but they do know that we try very hard not to exclude them, and it is because she has probs and not because we don't love them when we have to cancel a trip to the movies occasionally.
I think it helps the other children to be more understanding and excepting to have there sister be the way she is :)
And as to her exaggerating i wonder about my little drama queen occasionally too, but i was told just because Sissy is different does not mean that she is exempt from the rules the other children live by, but in some cases we may have to make accommodations or or changes like Sissy has a very real fear of being confined so she times out to her room instead of a chair when she is in trouble,
Due to your daughters age i would encourage her to "use her words" and talk to you about what she is feeling and why and help her narrow down exactly what the problem is so you can find a way to help her with it, instead of howling (which i know my daughter does) For example, she starts to howl that her undies are hurting her, squeezing her and she can't possibly put them on, Have her take a deep breath blow like shes going to blow a candle out a couple time so she can talk instead of howl, and have her think about what part of the undies are bothering her, is it the tag? the seems in the sides? the elastic? are they riding up on her? tag.. cut it out, seems in the sides.... you can buy her seamless panties or take a bit of regular masking tape and stick it tight over the seams on her hips so it doesn't dig into her, elastic... if you cut the elastic in the middle of the front and back it will still hold he undies up but it will stop squeezing, riding up on her... buy a size bigger or if she likes the way they feel get her boys boxer briefs, or boy shorts, slow her down and try to find out exactly what the prob is then you can both work together to problem solve, and you will see a decrease in real or induced drama queening :)

Thank you both for your suggestions and words of encouragement. Sometimes it's just nice to hear some supportive words.

Sissysmomma, thank you for the advisce on the panties. She is sooo perticular about them. The ones she likes I could only find at JC Penny and they quit selling them so I can't get a bigger size without getting a whole new style. The elastic around her waiste and legs are what bothers her and I can't believe I didn't think to cut them. LOL! Simple enough solution, I will try that tonight with her. Thank you! I have an appointment with a behavorial therapist next Monday. Not sure if this is the right route, but I will try it. I have the "Out of sync child" but not the one you suggested so I might try that one.

What is equine therapy?

We have a behavior therapist for sissy, i wouldn't know what to do with out her. Sis is so different than the other kids in her reactions and understanding of things sometimes and our therapist had been a big help they will be able to help you understand how your girl sees things and some times the answer is so simple you wanna smack yourself for not thinking of it lol but she REALLY helped us. My daughter is very visual (i suppose she'd have to be when her ears and skin don't work right, lol) and sticking up little pictures to remind her of things, or picture that show her schedule help her wait, the behaviorist helped with all this. ssssh! we like the behaviorist better than the OT :)

My daughter loves it then she doesnt thier bodies are always changing, I know with my daughter the joint compressions and the brushing worked wonders then she went through a phase where you cant touch her for the joint compressions or the brushing so we offer more OT stuff like swinging, and bouncing on a ball,, We have a behavior therapist and I dont know what we would do without her, they will help tons.. hugs and good luck

I wish I could get an answer for this, too. My dd is almost nine, and despite having to wait more than a YEAR for an OT, then have the OT REFUSE to do any brushing, compression, oral desensitization therapy, and being "let go" when my dh and I started question the LACK of real therapy (mostly the OT would eat up the food I brought for Hilli to try, saying, "Yummy, this is good. Let's pretend we're dinosaurs eating all this yummy food." (she was SEVEN year old with an IQ over 150 at the time.) While Hilli just STARED at her and mumbled "uh huh" (this OT went as far as to TAKE HOME some of the food we were supposed to use for therapy, to her HUSBAND telling me "Oh, Hilli won't eat it anyway. My husband will eat anything."

We were then "let go" when I begged for a new therapist. I was told, after several years of being told she was "Classic SID, possible Auspies, etc" by the "Director" of the Easter Seals Center "this is probably a Psychiatric Issue, so you'll have to go take her to a Psychiatrist." It took them TWO YEARS to tell me that? (This was after several THOUSAND dollars of MORE testing, which they said she "required" to continue therapy. Although the testing showed potential problems, they "assessed" that it was "no longer a sensory issue" (What? After NO real therapy for 2 years, she cured herself? Despite the fact that her issues were WORSE?) All because I started asking questions about "Why aren't you doing brushing" (I was told, when she was SIX that she was "too old.") "Why aren't you doing oral aversion therapy?" I was told "The window on that therapy has closed at her age." (THEN WHY THE &$&* wasn't it done earlier?) NO "heavy work" (which I asked about BEFORE she even began therapy) no weigh vests (which I asked about BEFORE therapy started) NOTHING but "games" about food.

My child is almost nine, is experiencing precocious puberty, overweight, and increasing irritable mood. We have been out of therapy for over a year (after being sent packing my Easter Seals despite knowing that our insurance was accepted by Easter Seals, they decided they "didn't like" the terms of our insurance, (after a YEAR of the insurance paying then less than their stated $140.00 per "therapy" session" and we ended up paying EVERY CENT ourselves.)

I also would like to know if a child who is nine is "too old" to start brushing therapy. Easter Seals scared me away from it, saying "if it isn't done right, you can ruin the child" Well, THEY RUINED my child by NOT doing a damn thing for 2 years. Now, we are on our own, NOTHING has "resolved itself" (as Easter Seals said it would) and I need somewhere to turn as well.

How old is "Too old?" And what can one do about a terribly BOTCHED Occupational Therapy disaster where the prime age that our child could have received help was wasted by this most UNHELPFUL place?

Sorry for the ranting, but things are getting very bad here, and with encroaching puberty, school being out for the summer (and a child who doesn't initiate social contact, although WILL play appropriately with children her age or older if placed in with them) we are about to lose our minds.

Also, I have a chronic pain disorder and fibromyalgia, and have been very ill since Thanksgiving (it's getting better, I think) and this is the first summer I have actually dreaded with this child. My husband and I are older (this was a "change of life baby" I was nearly 40 when she was born, and we don't have the energy of parents in their 20s, my dh has Tourette and mild Asperger's (despite a high IQ and being very functional, being a good a Senior Staff Engineer. THAT is Auspies, HF at it's best, I think.) and is he nearly 50, and we need help this summer and beyond.

I didn't mean to hijack your thread......but we are beside ourselves.

I was reading so many of these comments and they have been wonderful. We aren't getting much feedback from our OT after our son's sessions and one of my questions has been, does it get worse before it gets better? Thank you all for sharing that. In any of your experiences, how long does the "worse" last before it gets better. We have considered seeing a child psychologist along with the OT, has anyone done this before?

Our son has such profound fears and they keep getting worse. We have recently purchased the headphones with the CD's and look forward to starting that at home. He has been doing this at the OT's and we want to help by doing anything we can at home.

Any other suggestions would be so helpful to me, I feel at such a loss as NO one I know has a child going through these things, thanks!~

Hi Teethfan,

Welcome to the board. As an adult w/ SID from my experience it does get a lot worse before it gets better. Even as an adult there are still a lot of issues that can be a struggle too. Since SID is different for everyone, its really hard to gauge when things will be much better. For some its a few months and others it can be one or two years or more depending on how long they've been in therapy and how old the child is.

For example, some children adjust to routine change better as they get older and for others its still a struggle.

I've also, heard of the CDs and head phones. From what my OT says I think its supposed to help desensitize you from overreacting to noise. But we've never tried it though. I have also tried the brushing too but it didn't work since my skin is just way too sensitive. So I just use an extra cap of liquid fabric softener in the washer and also extra dryer sheets which helps me a bit.

Lastly, I do think it is a good idea to use a psychologist along w/ OT. Not sure if your DS has visual fears of certain textures and images like I do but, w/ the constant emotional highs and lows that come having SID, I know first hand how he feels and how hard it is to overcome these anxieties. Hopefully his psychologist will have a lot of great coping techniques. :D.

Good Luck w/ using the CDs I hope they help. :D