Perkins School for the Blind Transition Center

A “Heroed Generation” The Challenge of Caring for Both a Child with an ASD and Aging Parents

It has been fairly common to hear about the “sandwiched generation.” This refers to those who are caring for young children or who are helping young adults navigate the waters of college applications and starting a career path toward their own independent life while at the same time helping their aging parents who are starting to become physically or mentally frail and are in need of assistance. This is a very real challenge faced by a whole generation of middle-aged people. It is indeed a very daunting road to travel.

What of the parents whose young or adult child has Autism, Asperger’s Syndrome, and/or mild, moderate, or severe mental retardation? Perhaps they are not only the “sandwiched generation” but, in this age of supersizing, it would be more appropriate to refer to them as a “heroed generation.” Indeed, fast forwarding 20-25 years, what happens when they find themselves getting older with more health concerns and find it increasingly difficult to meet the needs of their child who is now 30 – 40 years old?

In some cases, these parents have cared for their adult child virtually on their own in the family home. Others have chosen placement in a group home for their son or daughter. In either case it continues to be a very big challenge. It becomes increasingly difficult to meet all the needs of the adult child or family member as they have done all their lives. It is simply physically and emotionally draining for these older parents. Yet there are some things that can make things a little less stressful and overwhelming.

The first thing is to develop and utilize a network or support system. Speak to other parents in the same situation. This not only offers emotional support, but also a sharing of knowledge about medical specialists, programs, and community resources. In particular, parents who are caring for their child in the home should be made aware of respite programs. These are opportunities for temporary care in a group home. This would be useful in cases of emergency, if the parents will be away from home, or if they simply need a day or two for a break. Utilizing a respite program also helps everyone become more comfortable with an increased level of independence from each other. It is often desirable to participate in respite care as a way to transition to group home placement if this is an eventual goal.

It is also important to reach out to family, friends, etc. who have a relationship with the family member and to let them help. If they can take over or assist with even one aspect of care, it can make a great difference. It will also be very gratifying to the family member that other people want to spend time with them and participate in their lives.

It is also critical to keep an open line of communication with the professionals that work with the family member. This is a good opportunity to compare notes. It is also a chance to see what could be carried over from the program or residence that parents can utilize at home. This would be especially true if there are behavioral issues and a behavior intervention program is utilized. A program in place in a residence or day program can often be of some help when the family member is at home with parents and family. Parents should be aware what behaviors are targeted and what interventions work or don’t work as the case may be. It is important to know what reinforcers and rewards are utilized. It is also a good idea to talk with residential staff after a weekend home visit for example as this would be a good opportunity to recap what went well and what didn’t. It is also helpful to keep in mind that schedules are fluid and can always be adapted or changed. Just because parents always picked their son or daughter up from the residence on Friday and brought him or her back on Sunday doesn’t mean it can’t change. This schedule may cease to be convenient and it simply could be time to revamp the time schedule. A simple thing like this can alleviate a great deal of stress.

Behavior is probably one of the biggest concerns that parents have. It can often make a long planned and much anticipated outing or trip a disaster. Unfortunately, this is not something that can ever be completely avoided. Yet being aware of certain things like noise level, the size of a venue, or how much walking is involved can help in planning and may eliminate a few potential problems.

Along with planning and positive behavioral intervention, it is crucial to be in communication with medical experts. This includes exploring the possibility of medication to help intervene with significant behavioral issues. Parents should be very comfortable with consulting with a psychiatrist and getting a clear indication of the risks, side effects and potential benefits of a medication being recommended.

By building this network, developing an open line of communication with the professionals in their child’s life, and realizing that it is okay to change things, it is hoped that these parents can relax. It is hoped they can realize that their decades of caring and advocacy have produced great results and, perhaps most importantly, that they can have peace of mind as both they and their children grow older.

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