Hi. I have a six year old DD with hypotonia and apraxia (severe, she is non-verbal) but with no formal diagnosis. She wears diapers or pull ups, but is close to growing out of her Pampers size 7's. I have a few questions:
1) Where do you get diapers for your children after they are to big for regular diapers and/or Pull Ups?
2) Any suggestions or advice on potty training non-verbal children? She will go on the potty if we take her, but it is hit or miss and depends if she has to go right then, we haven't figured out a way for her to tell us. Her fine motor skills are not at the point where she can do sign language. Her ST is helping us with a large potty icon and seeing if she will give it to us when she has to use the bathroom.
3) What do you do if you are out of the house and you need to change a dirty diaper? It is really difficult with larger children. Yesterday at the therapy center where DD gets her therapy twice a week, I had to change her and they have NOTHING for older children, just a tiny changing table for babies. I asked if there was an empty room to change her in and (every time this happens this is an issue) the office manager acted super irritated by it. I asked her what other parents do and she said they change their kids standing up! I told her that was impossible and they should have something for older kids. It is a therapy center for children with SN, and I just can't get over that they have nothing for this type of situation.
I used to have an older daycare boy and he used depends. I think he was in X-smalls after he outgrew size 6 diapers?
Oh, I just remembered, Goodnights come in pretty big sizes, and they hold a good amount so if she waits until her bladder is full to eliminated you should still be okay. They are a bit pricey though.
Hey mama, my dd2 is 5.5 years old and just now starting to be able to control and anticipate her bowels (it took her nearly 4 years to get peeing down). Once she grew out of diapers we switched to Goodnights (or a generic) size small. They are pricey, but I bet you can find them in bulk cheaper. Since she does get most of her pees into the potty (except at night) she usually only goes through one or two a day.
She is verbal and I don't have any experience with non verbal children (I used to do respite for father of a non verbal adult, but that's it!) so I can't give any advice there.
I can't believe her pediatric therapy acted like that! Is there someone you can complain to? I just change dd2 on the floor if I have to (I try to bring some kind of blanket just in case so she doesn't have to lay on the dirty floor). I can't imagine trying to change a poopy diaper with her standing up. How bizarre that they couldn't give you someplace private to change your dd.
I second the Goodnights and/or adult depends--depending on the size of your DD. I know that our insurance would cover pull-ups/depends after my daughter turns six and still has a medical need for them. Right now, we also order them bulk off Amazon for a lot less than at the stores.
My DD is verbal, but I agree with the use of a large icon to bring you or a gesture (in leu of a true sign language, you could still do a specific movement).
I have a 5 yr old DD that wears Pull-ups, but she is small and still wears a 3T so we can get away with using them for a while longer yet.
As for the therapy case---WoW! That is amazingly insensitive. My DD had 3 years of therapy and they were very kind about Pull/Up- diaper changes. They had a large yoga mat in the restroom for 'bigger' children to be laid upon (and sanitizing wipes to clean it afterward). There was also a sign saying that a raised therapy mat is available for children that needed to be elevated and/or lifted from a wheelchair.
I am shocked that a SN therapy center was so not SN friendly! I would complain!
don't have a sn child myself, but my mom's friend ended up getting some XL fuzzibunz for her older sn dd after seeing how easy they were while i was vsiting with ds. not sure that would work, but maybe worth a try? how odd that they don't provide a place for changing older children since they should be familiar with the added needs. hopefully they'll take it into consideration.
Hi! Thank you so much for your help/answers. I did do fuzzi bunz with her when she was younger and I am not up to doing cloth again (I also have a newborn) esp. because they don't have the absorption she needs. I did look at the Depends on Amazon and will try that. Thank you for the yoga mat suggestion. I think I will just buy one and use that in the bathroom, it should be big enough for her to lay on and me to put my knees down on. It really makes me so angry and upset that I even have to ask for an empty room. Plus if I am in there cleaning her up, there might be someone waiting to use the only bathroom. So frustrating. I am going to bring it up next week. We have been going to this place for over four years and it was never an issue until the last few months. DD never used to even need a diaper change and for some reason now she seems to about a 1/2 hour into her first therapy and I rarely can time it right and get her into the bathroom on time.
Can you come up with your own signal for her - it likely won't be the ASL sign for potty, but is there some kind of "thing" she can do to show you? And of course it would have to be something reserved for having to use the potty. It would be helpful if it can be done with just her body because having to keep and find a card at the last minute probably won't work long-term. I suppose it would also be nice if it's not too um, suggestive, in case you're out in public and she has to go LOL.
Kim mama to DS 12/2005, Pepper kitty , and 10/03, 1/05;
My ds1 is 8 and we're in a similar situation. He has state services for therapies and after he turned 3, we found out that because of the disability, it's no longer 'potty training', but medical incontinence. We have insurance pay for our pull ups. We get a shipment once a month, after we received an rx from a doctor. My other son, who is younger but larger, was into good nights for a while before I was able to get the pull ups for him also. My younger son eventually trained, but my 8yo is not that close yet. The goodnights get pretty expensive! I still have to buy wipes, but not having the expense of pull ups as well is a HUGE financial help.