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Parenting Children With Special Needs: Incontinence

Many children with special needs have difficulty with toileting. Some are just a few years delayed and some will never achieve independence. Here are some resources to help parents cope.

Cleaning up after a child's toileting mishaps is one of the most disgusting and aggravating tasks for any parent. For many parents of children with special needs,  the situations they face range from cleaning a few wet pants now and then, to repairing walls and furniture destroyed by smeared feces and sprayed urine.  For some children with developmental disabilities, it just takes a longer time than their typical peers, but eventually, they learn to stay dry.

However, for some other children, there is no finish line. The marathon never ends. Toddler training pants make way for big kid bed wetting pants, then adult diapers.  Caregivers pick up increasingly heavy children who become young adults who mess themselves around the clock. There comes a time when parents become unable to handle diapering a large child. Then the anguished dilemma is: who can we trust to take care of our child? How will we know he or she is not abusive?  Of course you check references, but the fear eats away at you.  To say the least, it can make a parent want to cry and/or scream.

Check with your service coordinator to see how you can get some financial assistance for paying for incontinence products and professional caregivers. If you don't have a service coordinator, check with Parent to Parent of Long Island (Phone: 1-800-559-1729 or 631-434-6196).  That organization can direct you to available service coordinators.

Please feel free to comment with suggestions or questions.  Thank you for taking the time to read this blog.

Resources:

National Institute of Health: http://kidney.niddk.nih.gov/kudiseases/pubs/uichildren/

Center for Disease Control: http://www.cdc.gov/family/specialneeds/

Parent to Parent Long Island can lead you to support groups and other resources:http://parenttoparentnys.org/offices/long-island/

Long Island Parent Center: http://www.autismspeaks.org/resource/long-island-parent-center

Autism Speaks Resource Library: http://www.autismspeaks.org/family-services/resource-library/websites-families

Nassau County: http://www.nassaucountyny.gov/agencies/dss/DSSHome.htm

Suffolk County: http://www.suffolkcountyny.gov/Departments/CountyExecutive/PeoplewithDisabilities.aspx

Respite and Caregiver Information:

Article: http://www.families.com/blog/give-me-a-break-finding-a-babysitter-for-your-special-needs-child

Article: http://suite101.com/article/respite-for-parents-of-special-needs-children-a136242

Article: http://www.sheknows.com/parenting/articles/815313/choosing-a-caregiver-for-your-special-needs-child-1

Tips on finding a caregiver (I have no data or experience with them but they are BBB accredited): http://www.care4hire.com/tips/22-finding-a-caregiver-for-your-special-needs-child/

A web site that helps match families with caregivers (I have no data or experience with them but they are BBB accredited): http://www.care.com/special-needs

Support Groups:

Suffolk County: http://suffolk.nymetroparents.com/article/Suffolk-CountyLong-Island-Support-Groups-for-Parents-of-Children-with-Special-Needs

Nassau County: http://nassau.nymetroparents.com/article/Nassau-CountyLong-Island-Support-Groups-for-Parents-of-Children-with-Special-Needs

Meetup: http://www.meetup.com/SpecialKids-SpecialNeeds-LongIsland-ParentGroup/

North Shore Long Island Jewish: http://www.northshorelij.com/NSLIJ/Support+Services+Available+for+Adults+with+Autism+Spectrum+Diso

Long Island Parent Online: http://liparentonline.com/family_resource_guide_family_support2.html

Incontinence Supplies: (I am not endorsing these products.  I have neither data nor experience with these.)

Soap.com: http://www.soap.com/buy?freetext=incontinence

HDIS (a home delivery on line service)http://www.hdis.com/specials/specials.html

Security Products Swim Diaper: http://www.sosecureproducts.com/incontinence-swim-diapers

North Shore (Chicago) Care: http://www.northshorecare.com/pullonsyouth1.html

 

 

 

 

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