Experiencing Heartache and Solutions with Our Adult Special Needs Child

At times it's a roller coaster, but we make sure she always knows we're there for her.

Joy Lundberg September 10, 2014
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In my recent article about our adopted daughter Carol, “Facing the Future of your Adopted Adult Special Needs Child”, her challenges, triumphs, and joys as an adult were addressed. It was fun to recap her post high school graduation life, dating, surprising marriage, and the opportunities all of that brought into her life. It was humbling to realize how far she has come. And her journey is still ongoing.

Her Husband’s Death

Ten years after Carol and Kim moved to California we received a call that changed her whole life. Kim had died in his sleep. He had developed diabetes and was neglectful in properly caring for it, being unwilling to follow doctors’ orders. The autopsy showed he also had undiagnosed pneumonia.

My husband and I caught the next flight and flew immediately to be with Carol. Friends from church cared for her until we arrived. There was so much to do. So many decisions to be made. So much comfort to be given to our widowed daughter. It was a daunting task. Once again, I kept thinking, “Things will work out.” We prayed for extra guidance to know what steps to take in her behalf.

Kim’s mother had passed away a year earlier and was cremated. He had told Carol and us that when he died he wanted to be cremated like his mother. So we honored that request. Little did we know it would come so soon.

We decided the best action for the moment would be to bring her home for a few weeks. We held a small memorial service here where relatives and caring friends could come to give their condolences and express their love to her. It was a comforting service, reassuring her that she would be with her husband once again in the next life. It brought her a measure of peace.

Back to California

California had become her home. She wanted to stay there. We knew it was the best option for her because of the excellent programs provided for the mentally disabled. So we returned. We met with her case worker and went to work trying to choose a good roommate for Carol. This case worker was incredibly helpful and caring. Susan, also a special needs client, was chosen to be her roommate. It was decided that the best thing for them was to move into a new apartment so Carol would not be surrounded by memories of Kim’s death. The perfect apartment was available in the same complex, which helped since things were familiar to her there.

Carol lives on social security benefits, which are small but enough to pay for her rent and needs. I became her long-distance payee to be sure she was taken care of and that her money was used properly. For awhile she worked again in workshop programs and earned a little extra money. However, the same problem would raise its ugly head and she would be incorrigible and let go. She had her best experience working at a Good Will Thrift Store.

After a time, the same problem erupted and they could no longer employ her. Her case workers tried everything to find programs that would help her. She tried many. Some would work for awhile and then wouldn’t. We cannot say enough good about those patient workers, some whom she yelled at and called names, misunderstanding their desire to help her. We became close to those workers and had ongoing phone conversations with them.

We would visit Carol, meet with her workers, and show her a good time. A few summers ago we took her on a short vacation to San Francisco. Several days before we were to arrive she fell and broke her leg. We decided to take the trip anyway, thinking it would be a good diversion for her. With her in a wheelchair we were able to see most of the sights and do our best to spoil her with a good time. It seemed to work well.

Each year we would fly her home for Christmas so she could be with her siblings and enjoy her nieces and nephews. It was a good diversion for her, though difficult for us. We discovered that she was only pleasant for about five days, then she would shift into ornery and unworkable. We found out that week-long visits were the only way to go.

Members of our church (LDS) in Sacramento have been loving and caring. They are angels of mercy, never ceasing to reach out to her in ways that touch our hearts. During our visits there we have come to know them well and enjoyed the chance to express our appreciation to them.

After a time we had to move Carol out of the apartment with Susan. She was a poor influence on Carol. Without going into detail, I’ll just say we knew we had to get her into a different situation. This was also encouraged by her case workers. With their help we found a smaller apartment that was just right for her. She would live alone, but continue to be watched over by the case workers. It worked out much better for her. She seemed happier with this situation.

Susan was still very much in Carol’s life. They got together often. She seemed to be one of the few friends who tolerated Carol’s difficult outbursts. Still we were concerned because Susan, among other things, was trying to turn Carol against us, and all of her family, as well as against the case workers. We understood that this was part of Susan’s disability, but nonetheless it had to be addressed. Carol is easily led in unhealthy paths. We knew it was serious when she called us one day and said, “You are no longer my family. Susan is my family.”  Susan had lost both her parents and wanted Carol to be in this same boat with her.

My comment to Carol that day was, “Yes, we are your family. I am your mother and always will be, not matter what anyone else says. I love you.” She replied matter-of-factly, “Well, I don’t love you anymore. So goodbye.” I was crushed, as was my husband. He assured me it was temporary. Our decision was to stay in touch, which wasn’t difficult because I was still her payee and she liked calling me about her money.

During this time Susan did her best to disparage us to Carol. At one point she told Carol, “You’re a baby if you keep going to your parents’ church. We should choose our own church. We’re adults, so we can do what we want. Let’s go to the Catholic church.”  Carol said, “OK.” And with that she immediately stopped going to her church and decided to join the Catholic church with Susan, who had not been a member of any church previously, at least to our knowledge.

That was two years ago. Carol has remained a dedicated member of the Catholic church ever since. Members and leaders of our church still visit her and help her as needed. They are dear souls with understanding hearts.

On visits to be with Carol we have met the priests where she attends. They are very fine and caring men who do their best to make Carol feel welcomed. The secretaries and nuns have been additional angels of mercy in helping meet her emotional and physical needs. We are grateful for the love and patience they show her.

Right now she has one of the most amazing case workers we have known. She is so understanding of Carol’s needs, and has the ability to look beyond her quirks and insults. She’s a gift from heaven. Carol is flourishing under her care.

Also, Carol is back to being “our daughter” and expressing love to us. We have learned that our job is to be a steady anchor, not dissuaded by her actions. By doing this she knows our love is real and we are always here for her. Somehow it all works out. We are feeling blessed that so many caring people are in her life. Prayers do get answered and things do work out.

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Joy Lundberg

Joy Lundberg and her husband, Gary, are the parents of 5 children, all of whom were adopted. They are also the proud grandparents of 20 grandchildren. Joy is a prize-winning lyricist and has written/co-written several books and articles about marriage and families with her husband. Learn more about her on their website.


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