Emotions Part 5 – Extended Family

The immediate family (parents and siblings) of a child with disabilities are generally the people we think are the most impacted by a child’s handicapping condition, aside from the child him- or herself. But, as with a pebble tossed into calm waters, there are ripples that travel outward in every direction, disturbing the calm of whoever is in their paths.

One of the challenges I’ve encountered as an advocate over the last 17+ years has been grandparents and other older extended family members who don’t understand or believe in learning disabilities. Largely, what has really been going on is very powerful denial. These elders don’t want to believe that such things exist because that could mean that the child could really have them and they don’t want to believe that, so they decide that the whole idea of learning disabilities is hogwash. I haven’t seen so much of this mentality lately. It was really prevalent in the late 1980s and early 1990s.

You have to bear in mind that, back in the day, no one knew about learning disabilities?or a whole lot of other disabilities that can compromise children’s success in school for that matter. If you looked okay, then you must be capable of achieving in school. Otherwise, you were just lazy. 

Older folks sometimes limit their comprehension of what it means to have a disability to physically observable things, such as being in a wheelchair or having obvious physical attributes as with Down’s Syndrome. When told that their grandchild has ADHD, they might respond that he’s just undisciplined. When told that their grandchild has dyslexia, he just isn’t trying hard enough. What is often really going on beneath the surface is that they take labels like “learning disabled” and translate them to mean “retarded.”

Getting through to them that the disorders are in no way alike (and even if they are, so what?) depends on who they are as people. Some folks are just stubborn and aren’t going to hear anything you say. Others just need to be educated on the subject and are totally open to new information.

As with parents when they first find out that their child has a disability, extended family members can first go into a stage of denial. There has to be a mistake! Each person moves through the phases at their own rate. Some get stuck at a phase and never quite move out of it. Eventually, those who move through all the phases without getting stuck will arrive at acceptance and start to recognize the symptoms and behaviors that make it clear that the child does have some kind of disability. At that point, these extended family members are in a position to respond to the situation most appropriately.

Family feuds can erupt over a child with special needs. Disagreements can arise not over just whether or not the child is disabled, but what to do about it.? Some family members may say “Don’t make waves!” while others may say “Give ’em hell!” Some extended family members may choose to shun the child and his/her immediate family because they feel uncomfortable around the child with special needs, while others embrace the child with open arms. 

Some extended family members will commit personal resources to addressing the child’s needs. I can’t tell you how many grandparents I’ve encountered who have personally financed private tutors and therapies and given hours and hours a week of their time shuttling their grandchildren with special needs to appointments and sessions. That goes for aunts, uncles, and close family friends, as well.

But, I’ve seen nuclear families pretty much going it alone, as well. Their extended families are not that close and don’t feel comfortable getting involved. This is particularly heartbreaking with single parent households where just the one parent is the only adult in the child’s life looking out to see that the child gets what he/she needs.

Extended family members who do get involved experience a wide variety of emotions. This is particularly the case with older extended family members who worry if the family will be able to collectively support the child’s needs, including covering the costs of things that should be, but have not been, provided by publicly funded agencies and programs.

Just babysitting for a child with severe autism, for example, can be exhausting. For older family members who may not be as healthy or physically fit as they once were, it is physically and emotionally draining to experience and witness just how much work is required to parent and educate a child with such demanding needs. For those with declining health, this can lead to a sense of powerlessness or even hopelessness, particularly if they are watching the younger, less-experienced-in-life parents of the child struggling to achieve appropriate services from the responsible agencies. Most often, the prevailing emotion on the part of these older family members is worry.

But, extended family isn’t limited to older family members. It also includes aunts, uncles, and cousins who collectively range in age from infancy to elderliness. For extended family members the same age as a child’s parents, these people are often raising families of their own and/or pursuing careers. Their plates are already full. They can easily become emotionally as well as physically unavailable to help out the parents of the child with disability. But, some families are stronger than others. I’ve seen the rallying together that can still happen in an extended family of the busiest people you can imagine. They can be very efficient in their division of the labor with everyone doing what they can in a way that creates a really solid support system.

All extended families are different, to be sure. Public education professionals need to pay a mindful eye to the type of support system a family has. While children with disabilities are entitled to a wide variety of services and supports, each child’s programming based on his/her unique needs, there is nothing that obligates a family to accept all that it is entitled to. I work with families who decline county mental health medication management services even though they were offered because they already have a prescribing psychiatrist who has been working with their child for years under their private insurance and don’t want to start over after all those years with someone new who doesn’t know their child. But, some nuclear families have little to no support from their extended families and are of limited means. They are, therefore, almost entirely dependent upon the public funded agencies and programs that exist to provide services to their children. 

Public school personnel should never take it for granted that just because a family may seem able to privately finance services, that doesn’t mean that it actually can or will. I’ve gone into school districts in affluent neighborhoods where special education is spoken of by school personnel as though it is a welfare program for the poor and severely handicapped. Parents of children with learning disabilities and the like are told their children are not eligible for special education and parents are given a list of tutors they can hire at private expense to help their kids on the side, which they do. My problem with that is not that wealthy people are paying for tutors they can usually well afford, but that they were put in that position through deceit and manipulation by people collecting paychecks from the taxpaying public. When it comes to special education, a citizen is a citizen and the system is supposed to be there for everyone, regardless of socio-economic status.

When families are able to offer, knowing they don’t have to, to provide a portion of a child’s entitled program at private expense, the involved public agencies are usually pretty appreciative and will do all they can to fill in the remaining holes. It’s when public agencies mislead families into thinking that such services can only be obtained privately or simply refuse to pay for them regardless of what the families know of their rights, particularly when those families don’t have the resources to pay for them, that I’m in hot pursuit of reimbursement and/or the public funding of such programs.

It’s important for families to support each other as best as they can. For those of you who are parents of children with special needs, take some time to think about your own extended family and the type of support system you have and where it could be strengthened. The more emotionally healthy your family is, the better the support system in place for your child with special needs and you. The better your personal support system is, the more you are able to contend with any challenges you encounter along the way as you parent and advocate for your child.

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