Please, please help...vent | Autism PDD
I have not read what other people wrote... but did u consider having her watch u take a shower??? Or u taking a shower with her??? Or have her help u give Nina a shower?? Forexample..."Mommy will pour water on Nina", and now Sharlet will do it... I am just winging it...Hi Allegra,
First, I want to send you the biggest hug. You are such an inspiration to me and so many others here, it is hard to know you are going through something so difficult.
And, because I can't resist at least trying to help in some way, I will make this very stupid suggestion: Does Sharlet have a visual schedule? My thought is that if the bath is on her schedule she will at least know when it is coming and when it is going to end. I would also use a visual timer during the bath so she can see when it will be over. While it may not prevent her anxiety reaction (it does sound like medicine is a good idea) it may simply help her to know. Keep in mind that while Sharlet normally has quite good receptive language, her receptive language is likely to disappear when she is stressed, making her feel even more stress.
On a separate note, your video of Sharlet's speech really inspired me. I have been working with a little boy for a year who appears to be about 2 months behind Sharlet in developing language. Your videos of her development have been the single biggest influence on my teaching. Thank you.
Allegra,
I know exactly what you are going through. My son didn't take a bath in the bathroom until age 6. He took his baths in the kitchen sink and he still at age 10 refuses to take a shower. Maybe you need to try different temps as my son loves it very very hot but maybe she needs it luke warm or maybe even cool to be comfortable. It may be the sounds in the bathroom bouncing off the tile walls or it could be the sound of the water going down the drain, she may even think she will go down the drain with the water. Does she like to swim at the lake? If she does take along some tear free shampoo and do a quick surprise shampoo. Maybe an experienced OT could help you with this.
Contact me if you need or want to.
Best of luck to you with the doctor appt. It is hard when they are so little to give them something like that, but hopefully it will help her.
Maybe it's the temperature? It might be feeling more hot or cold than you'd think for her. Try adding some more cold first and making it quite tepid and then just letting her paddle in it.You poor dears.....
I feel so badly for her, so scared she is vomiting and for you and the pain you must feel to see your daughter suffer like that. I wish I had helpful suggestions, but just wanted to offer support.
I recently put my daughter on Risperdal for SIB's.
It is a heart-breaking decision to make while you are going through it, but for the 6 weeks that she has been on it, we have had a bit of peace at home. It is a blessing not to have her banging her head against windows and pulling her hair....I am grateful for the meds and I don't regret putting her on them or taking my time to make the correct choice to do it.
Big hugs here.
My son went through something similar when he was about 4 .He still won't have anything to do with showers but now he absolutely loves taking a bath.
We had to do this as a team though to help him with his fears about bathing. His Dad took over the actual job of doing it ( He made it into a game ) .His teachers developed social stories about bathtime and told them to him durring school. His OT helped him at school with sensory issues about water using a water table as part of her time with her. It took nearly a month or more of everyone doing this together but it worked.
Is is warm enough where you live to have a kiddie pool outside? Maybe giving her a bath that way will help. Maybe she'd prefer a shower. Maybe you two can shower together. Or maybe you can give her regular sponge baths. Sit her on the toilet and wash between her legs while she sits there. Pour warm water between her legs to rinse. I grew up in a cold water flat and we had true baths only once a week. The other nights, my mother would "bath" us this way. It felt nice. You can possibly wash her hair in the sink. If all else failes, use wipes to clean her. Also, if it's warm enough now, get a kiddie pool outside and get her used to "swimming" in the kiddie pool. Perhaps you can wash her off in there before the "swimming" is over.tzoya,She is terrified of kiddies pools, and I live on a mountain, on an island
relatively close to the antarctic...and it's winter
She is even more scared of spraying water such as a sprinkler or shower.
Putting her in the shower is akin to putting a feral cat in the shower
She will not let me wash her in the sink or go anywhere near her genitals
with a cloth.
And she has a separate toilet phobia
Trust me, I have tried everything. that's why I feel so lost....Good luck with the appointment about meds. This doesn't have to be a permanent solution, but from your description it sounds necessary right now so that anxiety doesn't become an obstacle to future progress. Hang in there.
I feel for you!!! My son went through bath phobias, that seem totaly mild in comparison. This was before we knew he was autistic. I thought he was going through a stage, so I would omit the bath, and do the shower and just hose him down as quick as I could. I used to thank God every time that he was a boy, and I didn't have to deal with the long hair issue. I used to think that I needed professional help and some happy pills to get through life. It took about three months before I figured out what worked for him.
The trick for him was getting a shower handle that detached from the wall that he could hold and controll with help. We did this only in a shower stall, with either my husband or I in there with him. I took time, but we got though it.
What ever method works for you, be it meds or otherwise, God Bless ya for trying. "What ever works" is our policy.
We went through this on and off from 1 1/2-3. I bathed him about 3 times a week and supplemented with sponge baths or a wipe down with baby wipes. With OT and time he now loves taking baths. This too shall pass, just hang on. You'll find a way.well, I have bitten the bullet and made n appointment with her doctor to
discuss my options with medicating for the anxiety. It's by far our biggest
issue with Sharlet. everything else seems to be slowly improving (motor
delays, speech etc) but anxiety and obsessions/phobias are getting worse.
worse, WORSE! they are constant, they do cycle around, but she always has
at least three present EXTREME phobias. And the anxiety is holding her
back in everything. I talked to her GP on the phone about what it's been like
lately and she said that she thinks it would be a very good idea to sedate her
for baths, even if only for a while. So her appointment is on Thursday, wish
me luck... I wish I didn't have to medicate, but I don't know what else to do
I don't have anyone who is consistent and dedicated to working with
her on these issues. (well except me, but I need professionals) Hi guys,
I am just feeling so out of it at the moment. The bathing issue is so bad
that I just don't know what to do and where to turn. She has been getting
infections from not bathing, it had been two weeks since she had a bath,
so I had to force her yesterday, her hair still hasn't been washed.
She screamed so hard I thought someone would call the cops, she
grabbed everything she could to stop me getting her there, she vomited
until her throat was raw and burnt (still is today). And all this before she
even got in the water!! Once in the water, she just shook in fear,
screamed and
writhed and continued to vomit. I wasn't even considering trying to wash
her hair, this phobia just keeps getting worse and worse.
Keep in mind I did ALL the things suggested, I had her dolly to wash, her
favorite CD playing, all her fave toys in the water. I was in the bath
blowing bubbles, the heaters on, I covered the plug and had bubbles in
the water...
All of the strategies we came up with were to slowly introduce hair
washing, but now that is the least of my problems, I can't even get her in
the water to wash her bottom anymore...
I can't use any of the strategies I was taught if I can't even get her to the
bathroom without this EXTREME fear reaction...
What on earth am i supposed to do????????
Please help, or just hug...
Big, big hugs for you..... I can't even imagine what you're going through. It sounds like it's time to consult a professional. Is Sharlet seeing an OT? Can he/she help with any of this? What about psychiatric help? One of my next steps if going through this with my son would be that he had some kind of extreme fear/phobia or OCD thing going on that might be helped by some meds. I know meds are a last resort but it sounds like her health is starting to suffer here, so this is starting to qualify as a last resort situation, KWIM?
In the meantime, are you giving her sponge baths? What about bathing her in a small tub or bucket, something with only a couple inches of water, not in the bathroom...like possibly an inflatable pool in the backyard. Does she like to play in the sprinkler? Let her run through it and get wet, and then lather her up and let her run through until she's rinsed off. I'm not sure how extreme her fear is here, if it's focused on just the bathroom, or just liquids in general. Although I seem to remember you posting a while back about Sharlet refusing to drink....so..... if this problem is related to that you really should probably break down and seek psychiatric or some other kind of professional help. You're only human, NOT superwoman, and it sounds like you've given it your all and your stretched to your limits.
Oh, Allegra! I feel for you. I have been there with some random phobias thatare just non-negotioble. It's really stressful. I guess sponge baths would
only work for so long... Poor Sharlet and Poor You. I wish I had better
advice, but no---Just a hug
I'm so sorry. That must be so hard. My dd went through that phase for a week or two when she was little. :hugs: I hope it get easier for you. Grammasusie sounds like she has some good ideas. Maybe just clean her with wipes for a little while? Maybe talk to her dr. ?She has an OT (had) she left the hospital, There is occasionally one in her
group she goes to at EL, I have tried all her suggestions and NOT working.
I have no idea when I will see her again. Her teacher is taking a month off,
and it seems the phobia extends to being washed in a tub/bucjet. She has
never been willing to get in a wading pool and is terrified of spraying water
(such as sprinklers) Also it is the middle of winter and I live on a mountain
on the closest land mass to the antarctic, so that rules out doing it outside
(((HUGS))) As a geriatric nurse we would give bed bath on our most fragile patients..one of mine was 106 years old!
I wish I had better answers for you..Sharlet is such an angel:)
I am SO sorry Allegra! I cannot imagine how upset this must make you.
I want to share with you our story in the hopes it may help......our ds was a little like this and to this DAY the only way we get him to bathe is by putting a mat down in the tub and a chair on the mat, and he literally sits in the chair, NOT IN THE TUB. We let the water run gently, and DO NOT fill the tub. We of course have his few favorite things, but mostly we have an ICE POP - assorted flavors colors textrues, etc, he gets to pick which kind, and the ONLY time he gets those is during these 'bathing' times. We have a set schedule and only have him 'bathe' on the same two days every week, no more, no less.I am hoping this may help you.{{{{{{{{{{ALLEGRA}}}}}}}}}}}}
Oh Allegra... big hugs, I really don't have any practical advice as to how to get her to bathe and I have no experience dealing with phobias. However, I have some ideas for how to keep her clean while you work through this. I do alot of backcountry camping and have some products that I use to keep clean in situations where bathing is not an option.
Here is a link to norinse shampoo: http://www.rei.com/product/746099
Here is a link to norinse body bath: http://www.rei.com/product/746098
Here is a link to bath wipes: http://www.rei.com/product/750942
Here is another brand of bath wipes: http://www.drugstore.com/products/prod.asp?pid=38907&cat id=64338&trx=GFI-0-PLP&trxp1=64338&trxp2=38907&a mp;trxp3=1&trxp4=1&btrx=BUY-GFI-0-PLP
And another brand of bath wipes, this is the one I used on my last hiking trip: http://www.joediveramerica.com/page/JDA/PROD/aemed/0170-0300
I've never used the norise products on the kids (I've used them myself though), but I have used the bath wipes on them with excellent results. We occasionally have a long day outdoors with the kids where we have a long drive home and know we'll get home too late for baths. What I do is clean them with these wipes and then put their pjs on before we get in the car. It is amazing how clean the wipes can get them. Anyone who looked at them or smelled them would think they had a bath. You might want to give some of these things a shot.
Best of luck. I hope this gets better soon.
Thanks so much Kristy :) That could really help us in the meantime.this may sound like a silly question, but have you ever tried the shower? my sons sensory issues are as bad as they get, he hates/hated water on his head, loud noises, etc. however, i tried putting him in the shower.......the water angled more up front and he in the back, and i have to hold him the whole time, but it turns out he loves it and likes the water running on his face and the front of his head. its hard to get hime out. just a suggestion because i was going thru the same thing to the point that i had to keep his hair super short to keep it from being matted and fight like the dickons just for a quick clean in the bath.Mega mega mega hugs Thanks so much everyone for all your advice and hugs it means so much to
me.
Karolysgirl, thank you for your comments, It's people like you that are my
inspiration for making the video's. A cycle that is healthy for a change
Allegra, it sounds like you've gotten some good advice here. I kinda sorta agree that the anxiety meds sound appropriate for this situation. It must be really tough for you both - sorry.Allegra:
I don't want to give you redundant information, but do have a sensory
diet for Scharlet? If not, I can give you tips that I used to get my ds over
his sensory phobias. I have heard that, for some of our kids, that a bath
or water can feel like little knife stabs all over the body. I can't imagine
that, but I believe it's true. We were just really, really lucky to have a
great OT who believe in Sensory Integration. Even though are ped. didn't
think much of it, he took note of the differences it made.
I was wondering the following. I know there's a lot of anxiety around
bath-taking, so I was wondering if a sensory bucket was something you
tried. You can first fill a small bucket with sand or rice and hide some
favorite small toys in it (we did Nemo characters). Then gradually wet the
sand/rice little by little until her senses are OK with the new textures. If
you'd like more of these type suggestions, just let me know. I wish I lived
closer to you.
Lots of prayers...
Hi Allegra,
Lachlan goes through this stage on a regular basis. When he is is in the 'stage' (as he is now) I limit the times I bathe him per week and use 2 warm soapy washers (with elmo on them) to give him a good sponge bath every morning.
When there is no geeting around him needing a bath I fill the bath up only slightly and have a bowl in the bath ready and waiting for a quick rinse off. He absolutely hates water at the moment so it's literally in and out. I have the facewasher already soaped up and I keep one hand hold of his body ( I totally get the feral cat reference) whilst soaping with the other hand. I then give him a towel to dry to his face while I do a quick rinse off. I get as wet as he does, but he is slowly getting better.
I count to 20 saying he can get out at that number. Sometimes I really have to drag it out because he is still soapy, but I always get him out on that number. We are going to aim for '30' this week.
Talcum powder sprinkled through Sharlets hair will help if her hair is a little oily between washes.
Mysh
Hi my oriy she also hass bin there i let her screem it did not bothere me i told here if you fill like screeming then its ok .wen she whas at age 3 years it wass less screeming .than wen she whas 7 it stopd but some tims until this day she says im not going to shuwer. so i take her and say or my way or yours?.but it can pass you shoold let her have her fits.. you shoold allways bathe her. and wen you bath with her its good to. and let her whach you shuwer or wen you in the bath.or with her freinds her age that workt for me. the hair wass the hard ting to whash. now she loves washing her hair . so it will pass .good luck. with here.
For the hair, I just wet the cloth really well and put 1 squirt of shampoo or baby wash on it (about the size of a dime) and rub it in his hair thoroughly (he has rather long hair). Then I rinse the soap out of the cloth and attempt to wipe the shampoo out of his hair. It probably takes 10 rinses to get all the soap out. It's not a great hair wash, but it does better than you'd think. His hair comes out nice and shiny.
HTH and hugs to you!
Oh, how sad and stressful for you both!
You are getting a ton of suggestions here. I do think this siutation would be a good use of meds. And I was thinking, my pharmacy even carries a store-brand version of no-water, no-rinse cleanser -- ask around and see if you can find it -- it is pretty inexpensive for us, and my mom got hooked on it after her surgery!
I imagine Sharlet, even medicated, will require very cautious and gradual desensitization. Will she let you massage her? If you can make it seem like the massaging had nothing to do with bathing, that might be a start. And working with the more "public" areas, the first times, then gradually buildign her trust. The no-rinse cleanser, warmed, would be a good massage lubricant to start.
She must be terrified! And you must feel SO stressed! <<<HUGS>>> from a not-so-huggy person, and I hope it gets better.
Payne was starting down that road before we started the Prozac for another reason...It did seem to help that we showered with him and counted when washing his face.Allegra...I'm sorry to hear how frustrating this is for both you and Sharlet. I have to second the wipes suggestion. My son is still in diapers, so we "wash" that area during diaper changes. The face gets wiped down after dinner. Hands get washed before bed. Etc, etc, etc. Sometime not all body parts get washed at the same time!
Not by choice, but I have gone without bathing for weeks at a time. Ask anyone who's been in the military and deployed and they can tell you how to bathe with a bottle of water or a wet wipe!
I hope your dr appt goes well and I hope this phase passes. Good luck.
(((BIG HUGS)))
Hope the appt w/ the doc goes well & if you try meds they relieve some of
those anxieities & phobias. Our little one has them too, and I really hope
they get better with time, but so far, they are not. I can feel for you.
We've had a hard time w/ bathing. We used those wipes ShelleyR spoke
of, as well as a liquid shampoo & body wash that didn't need to be rinsed
off. We still use those on bad days, bought in a hospital pharmacy. She
now is okay most times in the tub, we have to have everything just so.
Earplugs help, as she doesn't like the sound of the water and getting
water in her ears. We have a picture schedule posted too, so she sees
what the order of the bath is (for us: get in, play, wash body, wash hair,
get out as she screams, I rock her while I dry her to help calm her). I
found a new pitcher with a soft end, developed to rinse kids' hair, this has
helped too (visit www.leapsandbounds.com, found mine at WalMart, but
know you are not in U.S.). We also have a social story on cleaning. Our
dd gets MRSA (staph) & yeast infections, and w/ her gtube, we have to
keep her as clean as possible. So, I feel your pain & know how difficult it
can be. I really hope the meds help and you are able to re-introduce the
bath to her, hopefully soon it will be a time of fun & relaxation for her.
Take care. (((HUGS)))Allegra I haven't been on the boards for awhile but just read this about your dear girl
I hope the doc can help!
That must be so hard you are an incredible mom to stick through all this and you make sure you give yourself a pat on the back!! You deserve the #1 Mom award 
Oh that has to be so frustrating and heartbreaking. I really hope you can find some solution soon as Im sure she would feel better after a bath and You wouldnt want a stinky child. (((((HUG))))) I had her pee tested a few days ago actually, all clear....
I'm about to go through the hell in a moment, I need to bath her and film
the chaos for her doctor to see at the appointment tomorrow. They need to
see exactly what they are dealing with. Poor Sharlet, poor me That sounds like a great idea...the therapists are always telling me to do that with my 10 yr old, but I never get around to it!!! He gets me so overwhelmed when he is throwing his fits!!! Good Luck with the dr!!! well, I may have had a minor break through.
This time was not so bad, she didn't vomit and I was able to hold her in the
bath, she still screamed and cried and resisted but not uncontrollably. She
has had 2 lots of panadol and Dimatap for the flu today and that seemed to
take the edge of the anxiety, That tells me that a medication that will have a
similar effect that she can take an hour before the bath might make it more
bearable. I am going to ask the doctor if I could potentially give her a dose
of dimatap before a bath, perhaps that would be better than a more serious
drug....
What do yall think?She has trouble ALL the time with anxiety, but bath times and in the car and
changes in routine or if we run out of something etc, thats when thigs go to
the extremes. I will ask the doctor about Risperdal.
We went through a similar time about a year ago. (Not as severe as you described but Drew screamed when we tried to get him in the bath). He eventually got over it. I did buy him a bunch of new bath toys and the one that did the trick was an Ernie in a boat (sesame street) He loves that boat to this day. He still hates to have his hair washed but he does tolerate it sort of.
Anyway, I hope this gets easier soon! Maybe try a glass of wine and a bath for you. (I know easier said than done) The last time I took a bath instead of a shower was when I was in labor :)
Laurie
Allerga:Good Luck tomorrow with the dr..it sounds like what my 10 struggles with...we are now off meds and it's hard...I used to give my now 10 yr old Benadryl for his massive tantrums!!! He was taking Risperdal at the time as well...it worked to alleviate the anxiety but over time I needed to give him more as his body got used to the medicine!! Does your daughter have trouble during the day or is it just at bathtime??? Risperdal (FDA approved for autism) helps the brain think more clearly and helps with sensory issues...my dr explained to me that instead of hearing every noise in the room, they can focus on one thing at a time!!!Thanks everyone. Well I have been able to use dry shampoo and brush it
through which was good (still would not dare attempt bath)
I have been using wipes to wash her, but that can be difficult when she
gets
feces inside her genitals
I am going to get someone from EL to come to my house and witness this
because I'm not sure they really get how extreme it is. Or I might video it
so
I can show the doctor at the appointment on Thursday. She is quite sick
at
the moment (again she just got over gastro) with the flu, so I hope she is
feeling better by the time I have to attempt it again. screaming and
vomiting
with an already sore throat would not be good
When she is better I'm going to attempt relatives houses for a bath,
because occasionally she will do things at other peoples houses. I doubt
it and it's a long shot, but worth a go.I was going to suggest the kiddie pool but see it was already suggested. Also the rain, for whatever reason showers bring huge meltdowns but the rain is a treat. I can't hardly get them to come inside. Being in an area that is cold all the time kind of rules that out though. Have you ever just put a bucket with a little bit of water on the kitchen floor or somewhere easy to clean up and then walk away and see what she does? Maybe just start with an unbreakable bowl of water. Maybe with a couple of toys in it? It might be a way to get her use to water on her terms to help get her over her phobia of water. Will she wash her hands or play in the sink with water and toys? I hope you get some help with this soon. I can understand not wanting to do meds but it is sounding like your only option. Good luck Allegra.Allegra, I am so sorry you are both going through this. This might sound weird, but could she have a bladder infection or something like that? The water could have made it feel bad and that could have set it off to where the thoiught of the tub equals pain? When I was little I bloved bubble baths but I got chronic bladder infections and the soap was not hypoallergenic and it was irritating, which nade everything worse. Just a thought ...Good luck with the meds issue. It is scarey, I know, I have been thier. Cis almost 4, but without meds, he is out of control no matter how hard I try. He is just so hyper he doesnt know what to do with himself. THe weird thing is how autism changes. The older he gets, the more I see anxiety in C, an I never saw it before. It makes me sad. Good luck with everything! Heidi
[QUOTE=dbcmom]Allegra, I am so sorry you are both going through this. This might sound weird, but could she have a bladder infection or something like that? [/QUOTE]
I would definitely look into that!!! I had them a lot as a kid too and man they can be painful and external tissue irritation goes with it.
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