my 3.5 year old son has PUV and I catheter him every 3 hrs. He just has a hard time holding his urine and has to wear diapers still. He used to dribble every few minutes so the fact he is no longer constantly dribbling is a wonderful healing already!
I’m curious what other mommies are doing with their kiddos if they have similar symptoms ie….he cannot go to preschool and most programs like gymnastics lessons won’t take him in a diaper.
I would really like for him to be able to participate in programs with other kiddos but how do I get around the diaper thing?
interested in how other mommies have handled this challenge…
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MotherofBarbearians
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Where are you located? In the US, the Americans with Disabilities act is on your side. Public schools (so, public preschool) are legally required to accommodate children with disabilities, and private facilities can not ban access based on disability.
Step one would be coordinating with his care team (doctors, therapists, etc.) to get a formal disability established. Once you have that paperwork in place, a lot unfolds from there.
If you’re not in the US, talk to his care team and mention “access” and “disability” - his incontinence should not hold him back from participating in activities and/or school.
we are in Arizona…. There is a public program for children w disabilities that is available, however, I just didn’t like the facility and I don’t want him in a public program where our family income and other details are scrutinized.
What I am hearing from private programs and gymnastics and other class programs like day camp in summers- is that it’s the licensing for programs that allow for a changing table in the room or not. Apparently, once kiddos hit 3 there is no changing table and no licensing.
That is what I’m being told . As for gymnastics- it’s a 60 minute class with a diaper and they will not let him participate again because of the diaper.
I will look into getting him started for disabilities paperwork - perhaps this will make a difference. Good advice. But I was told directly that his disability makes no difference because preschool is not mandatory and the licensing is a local county based license.
Hi, maybe things are different in my state & school district. Where I live, at age 3, a child with any developmental delays (and a medical issue leading to delayed urinary continence would count, I would hope) can be evaluated through a program called Child Find. This is done through the district’s Special Education Department. There is zero requirement to submit family income information, etc, at least for our district, because your child, if he meets criteria and qualifies for Special Education support (an IEP and therefore a preschool spot), is qualifying because of a medical/developmental issue. He is not among the children entering public school preschool because they are from low income families who have to submit family income documentation to prove that information. For example, our daughter with kidney disease also has autism & global developmental delays. She qualified for an IEP & got excellent preschool support. It was a great experience. I’m a physician and my husband is a computer engineer & wouldn’t have qualified income-wise anyway. I hope this helps!!!
PS Private or parochial schools, whether preschool, or higher level schools, are in general much less equipped to manage any complex (or even straightforward) medical, learning, developmental, or psychological issues for students than are public schools. They are generally not trained, staffed, etc, and unfortunately it’s very disappointing for parents sometimes. I know this as a parent of 2 kids with autism & ADHD and as a pediatrician who has seen many families navigate different situations. Some are awesome and real gems. Others cherry pick the students they’ll accept. However, it really depends on the school.
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Other diagnoses
Suprapubic Catheter
15 and Stage 4 CKD
