Gina and the group home. (Life Planning).

Gina is a beautiful little girl with chestnut brown hair and big fawn eyes. When she smiles, her cheeks puff up like over-stuffed raviolis and her eyes twinkle. On her good days she will come up to me and wrap her arms around my waist or put her velvety hand to my cheek. Gina has been diagnosed with autism/PDD; she has developmental disabilities and no longer speaks. Now that she is almost 10, Gina requires all my attention. She has the mind of a 3-year-old with some abilities of a 7-year-old and the strength of a 10-year-old. She is obviously capable of planning and logic; she has proven this many times with her antics.

One morning in mid-1999, Gina's Service Coordinator and I sat at the kitchen table and talked about Gina. As I picked up my cup of coffee and began to take a sip, the Service Coordinator said, "I have exciting news. There is a group home that will be opening soon, sometime around January 1." I almost choked on my coffee and said, "Oh no, she's too young! We've considered this as a possibility for the future, but thought that she wouldn't go into any residence for at least eight to ten more years!"

"Well," she said, "Let me tell you what could happen." Should there be a crisis that includes the death of your husband, or you, or both of you, or an illness that is so serious that you can no longer care for Gina, then she could end up wherever there is an immediate placement available, or even in foster care. She could be placed 200 miles away! This home is about 10 miles away from here. The house has been purchased and now all that is left is renovation to accommodate the children. This is an opportunity for Gina and your family that you can't turn down. Since the house will not open for a few months yet, you have time to think about it. You can always change your mind, but if you don't put Gina's name on the list, the placement will be lost. You should know that this home will be the first of its kind in our county, so there will be much attention paid to the care that the children receive and to what goes on in the home. It is a major breakthrough for young people with developmental disabilities, and if Venture (the sponsoring, agency) is going to create more homes of its kind, this must work for everyone involved. It will not be another Willowbrook, where the children are mistreated or neglected. You will be involved in everything from the start. You will be able to see the house and meet with the staff before the house even opens! You will not give up parental rights, guardianship is still yours, and the staff cannot even cut Gina's hair without your permission! You can visit any time you wish and take her home at any time for as long as you'd like. Children who have been in group homes like this one have eventually told their parents that they didn't want to go home some weekends because they would miss bowling or visits to the park. They love the activities and friendships they develop. And because she is no longer in your home, Gina will qualify for SSI and will receive a monthly allowance."

When my husband Frank came home from work, I very carefully told him all the details that I could remember. Frank is a realist, and the thought of Gina being placed in a residence had been on his mind for a while. He knew that we couldn't wait much longer, since both of us were exhausted and worn out. We cannot turn our backs for more than a moment--and sometimes even that is too long. Every outing turned into a disaster. Gina would grab from other people's shopping carts, or run away from me if she saw something more interesting. She was an active, healthy child and I was aging much faster than my years. If we went to a park, it was hard to keep up with her. She was an excellent climber and we just couldn't scale those structures at the playground. Other times she would sit down at the top of the slide and not move for the longest time. Then there was the pain of seeing other people stare when Gina made noises or giggled non-stop. This was beginning to take its toll on us. Even though I didn't say it out loud, I knew that we would end up accepting the placement. Frank knew this too, and didn't hesitate to say so.

And so it began. Every time I thought of the placement, I would cry. We have three older girls: April, then 22; Laura, then 14; and Christine, who was 13. The very next morning they found me at the kitchen table, crying so hard that when they asked what was wrong I couldn't tell them. Each time I began to say it, I would sob.

I drove Christine to school and on the way managed to blubber a little bit out, enough for her to understand what I was saying. "No," she said. "Why do we have to do that?" But I didn't really have to tell her. After all, she lived in a house where all her nail polish was opened and painted on her clothes and on Gina's face, hands, clothes and shoes. She hid all her pens and pencils, only to have Gina find them and mark up her homework or pictures or books. Christine and Laura had no vacation time from school; they spent that time watching Gina while I worked part time. I got home from work at 3:30 p.m., so they couldn't go out until then. They couldn't stay out late the night before because they had to get up with Gina, who slept no more than 8 hours. I let Christine tell April and Laura since I knew that I couldn't tell them without sobbing again. My reactions were upsetting them, too, so I stopped talking about the placement until I could get a grip on myself.

Little by little Christine and Laura were leaning towards the group home for Gina. They began to realize that they would have "normal" lives again, and that I would be calmer and able to renew old friendships or even make new friends. April understood more than Christine and Laura. She had planned her wedding mostly without me, though she involved me when it was possible. Visiting the hall and tasting the cake were done during Gina's respite weekends. I spent my summer vacation running around for fittings and planning a last-minute bridal shower, and went back to work exhausted.

Venture, the organization opening the house, was good. Well known in this county, Venture was started by a woman who had a child with a disability born sometime around the late 1960s or early `70s. I had read her book about her son and the trials of raising a child with a disability without benefit of state aid. Although vague about the circumstances, I remember that at that time there was little help for this child and other children with disabilities. The woman had passed away two or three years before the home was started and one of her sons is now running Venture. The house was the first of its kind in the county and would be under close scrutiny. That made me feel a little more secure about Gina living there without us.

I have a friend in California who teaches children with autism, and I asked her about this home. She thought it would be extremely beneficial to Gina. I asked everyone I knew whom I thought might be helpful for their thoughts on group homes. I looked on the internet for a site about residences so that I could ask questions. I belong to two lists on the internet: both have members who are parents of children with autism/Asperger's syndrome, and I tossed the idea around on one of the lists. To my dismay I received some very nasty emails, so I didn't post again about residences. Two friends on line helped me through some nasty moments, reminding me of the good this would do for my other children, my husband and me. They gave me positives when all I could think of were negatives. They were two of the best friends I could ever have. A friend of my sister was running a group home and I asked her many questions. I never stopped trying to learn what I could about group homes now that Gina would be entering one. That was October 1999, the home opened in October 2001.

When the purchase of the house was final, we went to visit. Other parents were there too, but most barely spoke. I suspect we were all feeling somewhat unsure and maybe even a little guilty about the venture we were about to undertake. Possibly these people had heard the same kind of negative comments as I. The CEO of the agency was there, the Service Coordinators were there, the heads of other agencies were there and some of the children were there. We went on a tour, saw the bedrooms and basement, and were told of renovation plans. The basement was still being renovated; padding and carpeting were to be added to ensure that the most active and mobile children could play there safely. All measures were being taken and additional renovation would be done to assure the safety of the children. We left the house a little more at ease.

Because of red tape and protests from the neighbors, the house would not open in January as planned. More meetings, and the budget approval was re-scheduled. To the shock of the agency, it was not approved. The house would not open in April--the proposed budget was too high. Venture had found someone familiar with the state budget approval process to help create a new budget. One problem was a staff nurse. Everyone wanted a nurse at the home, so cuts had to be made elsewhere. I agreed 100 percent that someone had to be there for the children at all times. Another quandary was the renovation. This too had to be approved and inspected, and apparently there were some glitches that needed to be corrected.

With each cancellation of the opening, I breathed a sigh of relief; although we knew it was coming and was necessary, at the same time I just wasn't ready to let go of my little girl.

When the school bus came in the mornings, Gina would giggle and run towards it. She loved school. I would watch her sit down in her seat. There was that little face looking out the window, with those two big eyes that didn't focus on me or seem to recognize me when the bus would return at 3:30 p.m. Those were the moments when I knew Gina needed more than I was able to give her. Those moments would strengthen my resolve about moving her into the Residence, as it was now being called. I was being torn in two different directions. I need her with me, but I needed time for the rest of my family.

A child needs her parents more than anyone else. Who can love her as much, or better? My motherly instincts were frightening me. I had to remind myself repeatedly that Gina warms up to people almost immediately, and that she would be fine. We would visit often and have her come home to visit. Gina needed 24-hour therapy and care, and she would get that living in the Residence.

I had been asked to write a little about Gina's day so the staff would know what she was used to. In order to make her adjustment easier, I wanted to write about her likes and dislikes, her food preferences and which foods she could not eat. I began writing in May and by July my piece about Gina had grown to five pages! I gave it to the Service Coordinator for the Residence staff.

July was our next tentative date. Our minds were now racing; we were caught in a storm of emotions. We wanted the time that this change would afford us but didn't want to say goodbye to Gina. Because she was non-verbal, I could not get any feedback from her. I told her about the house every chance I had, and about how she would be going out and doing things and have someone to care for her every minute of the day. I kept explaining it to her over and over, praying that she was getting the message. One day, while I was telling her of the activities she would participate in, she smiled at me. It was a tiny answer to all my prayers. She seemed to understand, and listened without any sign of sorrow. I had learned to read Gina's expressions and body language and felt comfortable with my instincts about her feelings. Just as I began to feel more secure about the move, though, I would remember that this was different, and I feared that my instincts were protecting me instead of Gina.

In early July we were invited to the house to sign papers and speak with the staff. We had arrived early so we toured the newly renovated house.

The front room was now a recreation room decorated in red, yellow and blue, and the walls were painted with figures from "The Lion King" and "Cinderella." Colorful buckets filled with toys were placed around the room, and a blue table and red chairs were set in the middle. "Pikachu" and "Blue's Clues" pillows adorned a glider in the corner. String, with colored clothespins to hold the drawings and schoolwork of the children, looped around the three connecting windows. An adorable pink bunny hung in the corner. It was beautiful, and welcoming to young children. Smoke alarms and sprinkler systems were in place in each room. The stone ledge of the fireplace this was covered in foam to protect the children from possible harm.

Then we went to see Gina's bedroom. The walls were painted light lavender and, golden oak furniture had been partly stained a grass green. Over the windows were little picket fences with ivy woven around them. Curtains had been vetoed since Gina pulls on them. All aspects of the personalities of the children who would be living there were taken into consideration. Every thing matched and it was beautiful.

The dining room held two oak tables and that is where we gathered for our meeting. The staff congratulated me on the most extensive paper ever written by a parent about his/her child. I was embarrassed but felt the need to have these strangers know every little thing about Gina so that she would be understood and properly cared for. Ten years of parenting Gina gave me a unique perspective on her, and I didn't want anyone to misunderstand her wants or needs. The people running the house told me they were extremely pleased with my paper--I had left no stone unturned! I, in turn, was pleased that they all took notes when we spoke and were jotting down what I myself considered important information about Gina. We sat for about 45 minutes telling stories about Gina, answering questions from the nurse and other staff members, and then the meeting was over.

Once again I felt a little more at ease. The staff would visit us at our house and we would sign a few more papers. I appreciated the way they watched Gina and listened intently when we spoke about her strengths and weaknesses.

This time it seemed possible that the home would open. I was scared and excited because by this time I was really exhausted. My schedule was tight and there was no time for anything other than Gina. The Service Coordinator took care of more legwork and paperwork so that Gina would be ready for the opening.

Around July 20 I received a call from the Service Coordinator telling me the home would not open. Although at the previous meeting we were told that "barring any major disaster" the house was ready, and although they had told us that the budget was approved, the check was still not in hand. We were more than a little confused; this was not the feeling I needed to have about the very people who would be responsible for Gina. They did not give me another date.

Laurie and Christine continued to watch Gina daily throughout the summer vacation, leaving to meet with friends only after I arrived home from work. They began taking turns with her so that they could have full days of vacation time, but she was getting to be too much for the girls.. I would come home to find that Gina had gotten hold of some nail polish, or a pencil, or opened the window and tossed out a block. Gina would run to me and grab my hand dragging me to get snacks and a drink, and would just cling to me.

School, and my rigorous morning routine, began again: up at 6 a.m., get myself together, get Gina up, get Gina fed and dressed, prepare my thermos, and get Gina's snack in her backpack. Go outside and wait for the bus, which came 10 minutes before I was due at work. Run to my car and race off to work.

With the September 11 disaster pre-occupying the Governor, papers had still not been signed, and the house could not open. This time it was understandable; but to my surprise, I was disappointed and disgusted. This was my sign that it was "time."

Then I received another set of dates, October 27, 28 or 29, and was told to choose one of the three days. I didn't want to move Gina in on Sunday, because I needed a day at home to fall apart. I needed to adjust to the emptiness, the quiet that would permeate the house, so I chose Saturday. Frank works on Saturdays but this day he took off.

We really didn't believe it was going to happen; still, after being given hundreds of little name tags, I began the job of ironing them onto every piece of clothing she had, including socks, and even some doll dresses. I couldn't think about why I was doing this ironing; I was afraid. Frank didn't call his boss about Saturday, although he had warned him. He too just felt it wouldn't happen on schedule. By Thursday, we had no cancellation call and I began to realize that the Residence just might open on the scheduled date.

Saturday came and I was numb. By packing boxes the night before, I kept myself too busy to think. We had breakfast and I stared at Gina even harder, watching her every move, trying to keep all those images inside my mind. I had been doing this since I was told of the home opening all those years back, but today was different. This was the day it would really happen.

We drove to the house in two cars, and when we arrived I was still pretty numb. We went inside and watched Gina run around playing in the rec room. We went into her bedroom to talk to the staff while they unpacked her clothes. They let Gina choose her bed and we laughed as she lay down on it, giggling. Gina took the hand of one of the aides and looked up at her with a little smile. We seemed to be in the way, since most parents had chosen Sunday as the day they would arrive and the staff still had much work to do. I was glad we had picked Saturday, because Gina would not have handled the chaos well. This way, she could acclimate herself to the staff and the house in peace. I finally turned to my family and said, "Maybe we should leave now?" I didn't feel any emotion and, I suppose now, I still wasn't accepting what was happening. The longer we stayed, the harder it would be for me to leave. Gina tried to go with the girls by taking their hands and heading for the door, and that upset them. I explained again to her that she would stay, and we would be back to visit.

Frank bolted and drove home alone. Christine was teary-eyed and Laura was quiet; there wasn't a sound in the car all the way home. April was waiting as we backed into the driveway. I looked over at Frank and saw him holding up Gina's cup; he had forgotten it and left it in the car. He was red-faced, and I burst into tears. Laura and Christine ran upstairs and ever-bubbly April chattered away, trying to cheer us as much as possible.

I didn't know what to do with myself. That day was the worst in my life. I sat at the kitchen table trying not to think but seeing images in my mind's eye, images of Gina watching her favorite Barney video or playing with her Lego blocks. All the good memories were there; none of the bad ones surfaced. This led to more feelings of guilt and remorse, more questioning of the decision to move Gina to the group home. I knew that we had the option of bringing her home, but I also knew that we would never have any kind of life if Gina were living here.

Every day after Gina moved, I got up, dressed and went to work. I would go to a store, and would see something that would remind me of Gina. I would think "What am I doing here?," then run out to the car and go home. This went on for at least a month. Daily, I cried--for Gina, and for what I perceived as the terrible thing that I had done to her. It was getting harder and harder to deal with and I didn't know what to do.

About a week after Gina moved to the Residence, I came home and looked around the yard: Gina's playground, pretty much the only world she had previously known. Her empty swing set and her trampoline. There was the little blow-up wading pool sitting under her swing just where she left it. I couldn't stand being on the deck where I used to put snacks and a drink for Gina after school. I remembered sitting and watching her play, as she would run from the swings to the trampoline. I had hung old CD's in the trees to scare the animals away from the garden, and when Gina discovered those flashing little orbs, she ran around giggling, and would swing them back and forth.

I thought, "Where is she? What is she doing now? Is she happy, sad, frightened?" I knew that I myself was feeling all of those things. Rather than stand there and fall apart, I grabbed a rake, and began raking the entire back yard. I raked for hours, yet the guilt was growing stronger and I raked on. I raked until I couldn't rake anymore, and realized it was dark. I went inside, exhausted, and started to cook supper. I noticed that a blister had grown and broken without my knowing it or feeling it. Episodes like this occurred sporadically. I would begin to feel sad, guilty, or frightened, and I would get up and clean until I couldn't clean anymore. I would mow the lawn, prune the bushes, deadhead the flowers--any job that required mindless hard work. I couldn't let myself think.

Then I went to visit Gina. It was only a week since she had moved to the Residence, but I missed her terribly. Just deciding to visit her made me feel happier. I went up to the house just after work, and waited at the window, excited that the bus would come and I would see Gina. She got off the school bus looking tired, and headed for the door. In my mind, I had blocked out Gina's autism and somehow fantasized that she would run to me, arms out, and fling herself at me. As Gina walked in the door the aide said, "Gina, look who's here!," but she barely responded. She was hungry--that was never the right time to get Gina's attention. The house was bustling now, with all the children coming in, and I was surprised at how quickly the noise and commotion died down. Gina came to me, and I hugged her.

The visit was a strange experience. I would look at the people at the Residence and know that they were Gina's caregivers now. I was just a visitor in this house. Whether this is true or not doesn't matter. My emotions totally controlled me, and my thoughts were jumbled. I realized that Gina was doing well. When I had to leave, she willingly went into the arms of another aide, and waved goodbye to me in her silly way. It broke my heart, because she wasn't acknowledging me as I had expected her to. I went home and had more crying jags. I thought to myself that I was acting stupid: Gina was happy, and that was what I wanted. I didn't understand myself anymore. All I ever wanted was to know that Gina wasn't frightened or felt deserted and now that I'd gotten my wish, I was still miserable. I seemed to be the only one in my family feeling this way. I realize now that this may not be true; Frank never asked me why I was so upset or why I was crying constantly, yet he seemed to understand.

The following Sunday, Frank could not take my crying anymore, so he picked up Gina and brought her home for a four-hour visit. I was in heaven, and enjoyed watching her play on her swings again. When it was time for her to go she didn't seem upset at all. Although I could not, and still cannot, bring her "home," Frank tells me she's happy when she gets there. Everyone greets her and she runs into the living room to sit and watch television. In retrospect I think that I was jealous of Gina's "new" family.

Each time I visit Gina at the house it gets a little easier to leave without crying I believe that she hadn't understood what I meant about her living there permanently, that maybe she thought that it was just another respite house. I see sorrow in her eyes, but I don't believe the sorrow is totally for her; I believe that she knows I'm sad about her leaving us. The staff takes her grocery shopping and feeds her on schedule, with snacks waiting as she arrives home. She is happy, although she misses us. She knows that she can't have the Residence, and all its activities, and us as well. Gina goes swimming weekly, to lunch at the local mall, to an indoor amusement park, the movies and the park, weather permitting. There isn't a weekend that some exciting trip isn't planned. We have Gina's visits scheduled so that she doesn't miss any of these trips.

Now when we visit the house she runs to us. She is more aware, and signing on her own! Although it is minimal, she is signing on her own! She comes home happy, and yet when it's time to go back, she is not sad. She is mellow and solemn but not sad. I think that when I learn to accept this strange and unusual situation and stop being sad for myself, Gina will be happy.

Gina has a friend at the house now. Another child with autism, a little boy around Gina's age, follows her everywhere! Gina normally does not like anyone following her, but doesn't complain about this boy. On a recent visit Gina interacted with us much more. When I visit I always bring Christine with me. This time Christine had brought Pringles, for herself and to share with Gina. Gina put out her hand and Christine gave her a chip. Gina's friend Jerry put out his hand and Christine put a chip into his hand too. On the floor was a little child who has cerebral palsy and does not speak or walk. I was on the sofa so all I could see was Christine, Gina and Jerry. Suddenly a little hand shot up, palm out, Gina flicked her hand at his and the aide said, "Jack wants one too!" This was important, because I had never seen Gina acknowledge any of the other children until this moment.

After the Pringles were gone Gina headed into another girl's room. This girl likes to watch videos and she had Disney songs on the VCR. Gina was enjoying the Disney songs--and the companionship of the girl! I watched as she rocked to the music and looked towards the other child. When I called out to her that she should come and visit with me, she waved bye and took me to the door!

I hope that someday I see the full benefit of Gina living at the Residence; it's only been three months. I do see changes in Gina, positive changes that make me feel, despite my sadness, as if we've done the right thing.

When Gina comes home now, there is no need to correct her or complain that she's taking over the living room. Everyone is happy to see her and patient with her. This is what we were no longer able to do with Gina when she still lived with us. Our fortitude was gone. The other family members, who also needed me, resented Gina's constant demands. I resented the lack of time to sit and relax. Gina now comes home and plays with her toys, watches television, and barely clings to me anymore. No more pulling me around because she's bored. She is so scheduled and active at the Residence that she appreciates just sitting here with us. We enjoy each other's company. During Gina's last visit I sang a little song to her as I used to do and she broke out in a huge smile, came to me and climbed onto my lap. Gina stayed on my lap and I continued singing until she got up.

Gina still comes up to me and puts her cheek against mine, or her lips to my cheek to kiss me. She touches my neck with her hand as she used to do, and I talk to her. She is not angry or hurt; she loves us. She's proven that she loves us, and knows us, and that is important to the entire extended family.

The Donovans live in the New York metropolitan area.