Need Suggestions @ diapers for my Autistic son.......HELP!

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Amyk
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19 Sep 2011, 12:59 pm

Hello,

My name is Amy and I am a brand new memeber. I discovered this forum while searching for some information about diapers for my 11 yo son who has Fragile X syndrome and Autism.

Until recently, diapers were just an expense we have always had. Last Spring, after trying jsut about every diaper out there on the market, I discovered "GoodNites" XL diapers that were PERFECT for us. Now, with puberty beating at our door, I need to find a new incontenence solution FAST.

My little darling is active, and though most days he is great about getting on the tiolet very often, the diaper is usually also wet. I tried some adult ones this weekend but found that with a little urine, he had a large sagging wet lump in his sweats.

Can anyone reccomend a good diaper? We have little to no $$$ but I learned early spending on a quality diaper is no luxury so.........

Any suggestions are appriciated...



DW_a_mom
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19 Sep 2011, 10:25 pm

I have no ideas or suggestions, but do want to welcome you to Wrong Planet.

Most of our families with these types of issues post in the Classic Austism, PDD-NOS, etc. thread, but I think the current regulars there have younger children than yours, so they probably have not confronted this issue yet.


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gramirez
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19 Sep 2011, 10:41 pm

Are you looking for a pull-up or a tape-on diaper? Have you tried Attends brand?


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Amyk
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20 Sep 2011, 8:25 am

I like the pull ups as I still haven't given up on toilet training him and they are more like "underwear" and no, I have not tried that brand.

Thank you for the welcome, no one posted anything in so long, I thought perhaps this wasn't so much a community as a club....I was going to post in the introduce yourself thread but that looked kind of involved so, having my own neuro issues, I just skipped to conversation.

I belonged to several sites when he was younger and first dx. The middle school is pushing me away with both hands ("for his independance") and there really isn't much here in the way of support groups. I am sure I will figure it out, I always do.



DW_a_mom
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20 Sep 2011, 10:21 am

I hope we're not clubbish, I don't think we are, but most of us are not good at knowing what to say if we don't have something solid to recommend. Posts that don't seek advice can stump people, too. Posters tend to respond where they see need they have ideas for.

Many of the posters are ASD themselves, which provides a unique resource, but it does change the tone of talk.


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missykrissy
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20 Sep 2011, 12:29 pm

i know there is one brand of adult diapers that look very much like the goodnights but are bigger. they might have been attends, i am not sure though.



claudia
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20 Sep 2011, 3:17 pm

DW_a_mom wrote:
I hope we're not clubbish, I don't think we are, but most of us are not good at knowing what to say if we don't have something solid to recommend.


Hello Amyk, DW_a_mom is right... welcome :)



Amyk
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20 Sep 2011, 7:05 pm

Of course, I thought of the people on the board after I posted. I may not be AS, but I do have enough neuro issues that between that and trying beyond my scope of ability to be the best parent I can be to my kiddo....my frustration bubbles over more than I would like.

I did try a RiteAid brand (like depends) they are too elastic and those were the sagging ones when wet. I purchased some Depends brand today and they are a little better but still not quite the fit like the goodnites.

I also bought some of the Assurance, but same thing, there is just a TON of elastic around both the waist and the legs which present 2 issues: One being it is already a struggle to fit clothes around his rapidly changing waist line & the other being with our hormones now kicking in, trying to keep his hands out of the very accesable legs to stim himself.

Ah...and the new obsession with his boy parts. He's always touched it a lot and I know it's normal to increase that now, but attempting to make him understand WHERE and WHEN since he is nonverbal....ah, that is another issue all together :)

Thank you for your input though, I appriciate it!



momsparky
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20 Sep 2011, 7:16 pm

I've no personal experience, but I can google with the best of 'em - this site at least appears to have ratings available, plus it's got a lot of options including washable diapers, underpants liners, etc. http://www.parentgiving.com/buyer-guide ... -products/

Hopefully somebody will chime in and help you out.



azurecrayon
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20 Sep 2011, 7:26 pm

i cant help with brand suggestions, since our autie is only 5 and we are lucky in that he still fits into size 6 diapers.

for the cost tho, i am not sure where you are and your insurance coverage, but you may want to check your insurance if you havent already. we live in the US, our son gets medicaid because of autism and they usually cover diapers. we had his physician write a prescription for incontinence and we get diapers delivered every month. it was a huge relief when i got that set up as paying for diapers every month was getting expensive.


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C - 8 yrs NT
N - 15 yrs school dx AS


Amyk
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20 Sep 2011, 8:45 pm

Oregon has it's own health plan which superceeds Federal medicaid only it is MUCH worse if you can imagine....we did try it once but could only order from Norco and all they had were for bed ridden patients. They had a thin diaper center and a super thin plastic shell that tore as soon as he did anything but sit.

I will go check out that website now. I have googled it before but only found Diapers dot com and they only carry the little one items for more than you can buy them at Walmart.



gramirez
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20 Sep 2011, 9:12 pm

Amyk wrote:
I did try a RiteAid brand (like depends) they are too elastic and those were the sagging ones when wet. I purchased some Depends brand today and they are a little better but still not quite the fit like the goodnites.

I also bought some of the Assurance, but same thing, there is just a TON of elastic around both the waist and the legs which present 2 issues: One being it is already a struggle to fit clothes around his rapidly changing waist line & the other being with our hormones now kicking in, trying to keep his hands out of the very accesable legs to stim himself.

For this reason, tape-on diapers might be better. There are more options, have better absorbency, and a more custom fit.

Check out sites like Amazon, XP Medical [link], NorthShore Care Supply [link], and even Walmart.com has more options with great prices. Many offer free shipping.


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draelynn
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20 Sep 2011, 9:18 pm

Hi Amyk!

My 9yo only needs them for nighttimes and she is in adult sizes. She also is a very active sleeper - regular diapers would gap and leak. She outgrew kids sizes about a year ago so we've been experimenting quite a bit. Most of the nighttime pullup diapers are designed for holding capacity while remaining somewhat invisible under clothing. I would recommend trying the nigttime specific adult diapers. Most of your drug stores have store brands that are cheaper than the national brands and I have found no difference in performance. It would seem to me if these can contain my nighttime gymnast, they may work well for daytimes too. Don't know if that will help but it is about an $8-9 experiment. Good luck.



Amyk
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21 Sep 2011, 9:10 am

Tape on won't work. He takes himself to the potty all day and this is one of the VERY FEW things he can do independantly. However, his teacher and I just discussed switching him over to elastic waist pants to make it easier on him toileting so there is no way he can manage more than a pull up....

When Mason was little I also didn't see a difference in off brand diapers but I woudl say when he was, maybe 5 or so (2005) there was an abrupt and dramatic change in them. We had been using ?DriBottoms? from Walmart and they were so awesome, I had all my friends using them. Then, like I said, one day the quality just took a nose dive and never got better.

Last Spring when I was searching for diapers, I tried everything I could get my hands on and I can tell you that IMO the larger size"off brand" diapers were just junk. Again, maybe ok for little ones but I wouldn't recommend for a bigger kid who is as "busy"or who drinks as much water as mine...

I don't mean to sound rude (at all) but I often come across that way, Draelynn, your 9yo weighs more than 125 lbs? I know that it is possible but I think because my little chunky monkey was a bean pole for so long that I am having a hard time adjusting to normal kid weight ranges? I still pick up sz 8-10 clothes and really think it should fit, maybe it's denial? lol

I will investigate the night time diapers in the youth/adult sizes.



draelynn
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21 Sep 2011, 2:09 pm

Amyk wrote:
Tape on won't work. He takes himself to the potty all day and this is one of the VERY FEW things he can do independantly. However, his teacher and I just discussed switching him over to elastic waist pants to make it easier on him toileting so there is no way he can manage more than a pull up....

When Mason was little I also didn't see a difference in off brand diapers but I woudl say when he was, maybe 5 or so (2005) there was an abrupt and dramatic change in them. We had been using ?DriBottoms? from Walmart and they were so awesome, I had all my friends using them. Then, like I said, one day the quality just took a nose dive and never got better.

Last Spring when I was searching for diapers, I tried everything I could get my hands on and I can tell you that IMO the larger size"off brand" diapers were just junk. Again, maybe ok for little ones but I wouldn't recommend for a bigger kid who is as "busy"or who drinks as much water as mine...

I don't mean to sound rude (at all) but I often come across that way, Draelynn, your 9yo weighs more than 125 lbs? I know that it is possible but I think because my little chunky monkey was a bean pole for so long that I am having a hard time adjusting to normal kid weight ranges? I still pick up sz 8-10 clothes and really think it should fit, maybe it's denial? lol

I will investigate the night time diapers in the youth/adult sizes.


My 9yo is a viking princess. She's been in the 110-120% percentile inheight and weight since 3 months old. She has a daddy who's 6'6" and she been growing like a weed since the day she was born. She's in 4-5 shoes (womens), she's 4'10" (only 4" shorter than me) and she weighs just over 100lbs. She is overweight but doesn't SHOW it the way you'd imagine. She truly has big bone structure and dense muscles - just like her daddy and his viking genes. And she is hard on shoes, clothes (new waredrobes every three months without fail) and nighttimes she tears her bed up with some much too animated sleeping.

We've used CVS, RiteAid and Walgreens store brands with her and have had better success than with national brands. We switched to adult sizes because kids sizes are cut for - well -chunky kids. She's built more like a chubby teen. Not so familiar with Walmarts store brand. But, again, my kid isn't in daytime diapers - just nighttime. I can only asset to how they hold up with her thrashing and the volume. We have also never had her in any type of pants other than elastic band types. Buttons and snaps were too big an obstacle when she was potty training and we never went back. She is still working on the dexterity skills on buttons and such but we limit those to shirts and jackets. Anything to streamline the potty process is a big plus.



zenmaster
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13 Nov 2011, 1:07 am

Hello, "Zenmaster" here.. I see your dilemma.. you want a product that he can get on and off easily.. but you want to make sure that it absorbs well and to keep his boy parts out of there. thats a tricky one. I have PDD-NOS myself, and have had fisthand expereince dealing with past incontience issues not related to PDD. I tried using pullups, but found them not to be practical. as they did not offer adequate padding coverage. I found that the diaper style worked best for me. I s till used the toilet however. Now that i no longer have inconteince issues thanks to treatement, i like to see if i can help others in the same spot anyway i can.
What is your son's waist size? I definetly would stay away from the store brand pullups if you can help it. I would recommend Tranquility, Abena or attends or tena for pullups. Also, something to consider is this.. when i had to wear diapers, i wore tena ultra. They recently changed their design so that the tabs were velcro like and finely refasten able. It would be a simple matter for him to get them up and down if you loosen a tab and then reattach it. I hear what your'e saying about hand in his pants.. that could be remided by wearing a bodysuit..aka a onesie... asl. I am a subsitute teacher and subsitute paraprofessional and my work this year has included paraproassigments where i worked with a nonverbal autie who had issue keeping his hand out of his pants.. its a constant battle. Hang in there. This site isnt letting me post links.. but google easy access clothing, and XP Medical. That should get you started on finding top quality stuff.

Hope ive been helpful.

Zenmaster