http://www.yoursocialworker.com/articles.htm
An Interview with Gary Direnfeld: On Parental Guilt
Wednesday, November 30, 2005
EducationNews.org
Suzi Cottrell
Michael F. Shaughnessy
Eastern New Mexico University
Portales, New Mexico
Gary Direnfeld is a social worker who works with families, children and parents. Courts in Ontario, Canada, consider him an expert on child development, parent-child relations, marital and family therapy, custody and access recommendations, social work and an expert for the purpose of giving a critique on a Section 112 (social work) report. His latest book is Raising Kids Without Raising Cane. In this interview, he discusses some of the issues faced by parents who have children with special needs and the challenges that confront these parents.
1. Why do parents of special needs children suffer such guilt?
Not all parents do suffer guilt per se, but virtually all parents hope for their children to be well. When their children are not well, most will go to great lengths to make things as good as possible. If you consider this from a Darwinian perspective, guilt and wanting what’s best for your child leads to their care and hence survival. So guilt isn’t necessarily a bad thing, but if it is overwhelming and gets in the way of proper care, then it must be managed.
2. What are some positive ways to overcome this kind of guilt?
The best antidote for guilt is taking appropriate action with regard to the needs of your children - even if that means counseling for the caregiver too. Appropriate action provides a mechanism to overcome. Further, parents should take delight in their child’s achievements. This is good for the child and parent alike.
3. You discuss two possible ways parents try to deal with guilt.
The first is a “heroic effort to meet the child’s needs.” What are the dangers of this type of effort?
By heroic efforts I am referring to the parent who may place inordinately high expectations of the child in an effort to make the child normal. If the child is unable to meet expectations, yet the expectations remain, you have a set-up for failure. Failure leads to poor self-esteem and at times behaviour problems. So in other words, heroic efforts can backfire and paradoxically lead to further distress.
4. The second way parents deal with guilt discussed in your article “Parental Guilt and Kids with Special Needs” is by placing minimal expectations on their child. What are the dangers of this type of effort?
Minimal expectations are kind of the opposite of heroic actions. Here the parent does not place adequate expectations on the child. In a sense the parent sees the child as disabled and takes over functions the child could otherwise perform. Taken further, some parents will look to assuage their guilt by spoiling their child with privileges beyond what would be appropriate, such as eating junk food, sitting at home all day long, poor grooming, etc. Treating a child as disabled actually can disable them further. Parents are advised to help children take appropriate care of themselves. Parents must maintain reasonable, age appropriate expectations with regard to abilities as opposed to thinking just in terms of disabilities.
5. What are some practical ways parents can help their special
needs child without falling into one of the danger areas?
A behavioural model for helping children follows this paradigm:
Model; lead; test; reinforce. In other words, show your child what to do, help them through it, see if they can do it on their own, give feedback in the form of praise and hugs for achievements or efforts.
6. Why does dealing with children with special needs take such a hard toll on marriages?
The care of all children demands time and attention. The care of
children with special needs requires inordinately more time and attention This in and of itself is a stressor for any contemporary family - especially for single parent or two income families where time as a resource, is limited. Add to that the feelings of the parent(s), the needs of other children and the idiosyncratic needs of the child with special needs, the parental resources, time, energy and emotions. resources get stretched. Further, we haven’t even touched how in this scenario the parents have time for themselves and each other!
7. What are some practical ways couples can strengthen their
marriage when they have a special needs child?
Parents must recognize that if they do not meet each other’s needs from time to time, they lose touch with each other. As such, parents need a chance to stay connected and must re-charge themselves. Put simply, parents need a break too. To the degree they take a break, they actually have more to give to their children. This is why from a social policy or social service point of view, we advocate for things like parental leave and respite care. Some parents can rely on extended family or friends and some parents, sadly do not have access to resources to enable them to have a break. In any event, parents are cautioned against burning themselves out, otherwise they will have nothing left for their kids or marriage.
8. Many parents indicate that when they go to IEP (Individual
Educational Plan) meetings that they feel overwhelmed and that all the professionals seem to ” gang up ” on them. Is it that some professionals are insensitive? Or is the paperwork more important than cordial, congenial relations?
A child with special needs can present with a vast array of problems. To address those problems a vast array of professionals may be assembled. The professionals are generally used to each other, what they all do, how to work together, etc. They may forget how overwhelming and intimidating they may be as a group to the parents. When a parent meets with such a group, the parent is advised to ask for each persons name and profession. They should ask specifically what they do and how they help their child. Further they should enquire as to what each professional expects of them - the parents. If a parent has difficulty with this, they should then first speak with the social worker in the group. The social worker is likely the best person to help the parents with all those specific questions. Further the social worker can speak on behalf or the parents or at least help the parent determine the questions they need answered.
9. At what point do you as a social worker say “You guys need to be in counseling”?
I tell folks they could benefit from counseling if it appears they are unable to resolve matters between themselves or if they could benefit from additional information, or education, or guidance that might ease stress or distress.
10. In this stress filled world what resources do parents of special needs kids have at their disposal?
Resources may depend on jurisdiction. Each school board and in some cases, each school has different resources. As such, parents should meet and chat about matters with the school social worker or principal. Further there are a good many social service agencies in virtually every community. Parents may have to search for these themselves or again consult with the social worker who may direct them.
Further, depending on the special need, there may be a community support group specific to that need. Community support groups offer access to information and at times meetings wherein parents can confer with other parents to trade information and strategies and thus gain support.
11. In your estimation, are our Senators and Congressmen and women in touch with the reality of the difficulties that parents face?
The issues faced by parents whose children have special needs are not well understood by the general population. To that end, politicians are like the general population. These issues must be brought to their attention and hence we find that groups of parents do band together to educate and lobby legislators to then provide funding and services to help support these families and children. We cannot blame others for that which they do not know. So first we educate, then we advocate.
12. Many years ago, children with autism, mental retardation and
deaf/blind children were all institutionalized.
Now, the “current thinking” is to educate these children in the schools and have them live at home. On one hand, we have minimized institutionalization, but on the other hand, we are asking parents to pay a tremendous price in terms of raising children that were institutionalized in the past. What are your thoughts on this?
Welcome to the swinging pendulum. The controversy has been previously framed as institutionalization versus de-institutionalization, or now, institutional care versus community care or even segregation versus integration.
As we as a society learn more, we change what we do. Earlier thinking was that kids with certain of these special needs would never amount to anything, that they could never function independently and that they must be fully cared for. Hence they were institutionalized. Then we learned two things: Firstly, institutional life-long care is expensive and secondly, many of these persons were actually capable of much more independent living than we gave them credit for. In other would institutional care was contributing to their dysfunction.
So, the pendulum has swung the other way. We discharged these persons to the care of community services and back to parents and many of these children are now contributing members of society. However, as a society, we failed to build in all the necessary community supports to help and we are learning that some families break down under the demands.
Over a period of 20 to 30 years, social services has been playing
catch-up to help support these children in the care of their parents and communities. The pendulum is beginning to come back and we are recognizing that parents cannot in all cases fully meet the needs of all children either. Whereas before we didn’t help children to fully function, now in some cases we overburden parents and hence contribute to family breakdown which in turn leads to other necessary services to pick up the pieces.
Social policy is beginning to catch up with the notion that we need a menu of services and that parents and children should be able to select from that menu according to their needs. This struggle continues though and is ongoing. As a society, we continue to learn. and hopefully grow in our understanding and appreciation of these issues.
Gary Direnfeld, MSW, RSW
(http://www.yoursocialworker.com/)