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Recently, Dr. Zetick discussed the challenges that parents raising a mentally challenged child will face and what resources are available:
"In my view, the most useful and consistent source of support for parents caring for a child with a disability has always been each other. From the moment a diagnosis is made, I have seen parents rush to each others' sides and stay there for a lifetime. I have always admired those bonds that I have seen develop among parents and guardians.
"Of course, that is not the only support needed. I would list the following:
physicians and health care specialists that will listen and respect the parents' input respite care, where someone comes into the home or in some models, the child goes to a facility, typically for less than 30 days, where the parents can be assured that the child is well cared for and that his/her special needs can be accommodated in-home nursing services for children who are ventilator-dependent or who have other chronic health conditions; the parents very much want to keep the child at home, but the physical demands can be draining teachers who believe in the child, try to include the child as much as possible with peers who are not disabled, and who learn any skills needed to accomodate the child, such as tube feeding or recognizing signs of physical distress neighbors and family who love and respect the child and see his/her abilities
The most difficult times:
getting the child established in an educational setting where the teacher responds positively to the child, the Individualized Education Program (IEP) is being carried out, and there are opportunities for inclusion with children without disabilities; the absence of this is painful to parents, and it continually changes so one year the child might have this setting and in a future year might not; the parent is continually on guard for these conditions to happen at age 21 the person with the disability is no longer eligible for public education, and there is no funding entitlement for other services; what happens now? This is every parent's nightmare. There are plenty of excellent models--group homes, job coaches, independent living--but the parent must find these services for their son/daughter and that is the rub. as the parent ages, the question always becomes, "What will happen to the son/daughter with a disability when the parent is no longer available?" This is the most pressing and challenging problem of all. Having the funds to set up a trust on behalf of the individual with a disability helps; what if the parent lacks funds to do that? This is a true fear and nightmare for parents.
"In many ways parenting a child with a disability isn't all that different, but not in all ways.
Day care centers scrutinize the special needs of children with disablities so parents know they can't just walk into any day care center and expect that this will work out for their child. Some children with disabilites have physical or behavioral challenges When a son/daughter reaches age 21 and doesn't have a disability, it may be a time of change and adjustment, but with the child with a disability, it can be an extremely upsetting situation if community services can't be identified. The individual can no longer attend school, so what do they do? Typically they need some supports to live independently and work, and it is challenging to put together a service package that will meet all their needs. The greatest difference of all is that as parents age, typically their adult sons/daughters help them; parents of individuals with disablilities often don't have that luxury. Their parenting role goes on, even though they're aging and facing their own challenges."