When You Have to Say Goodbye

Patricia Leonard-Toomey

“Goodbye Granddad’s house.
It is me, Devon
I am really going to miss you.”
So began the end of an era.
My Mother passed away suddenly eleven years ago.
My Father passed away quite suddenly after excessive shoveling during the winter storms of 2015.
Nothing has been the same since then. For those of you who have been around for a while, and remember some of the discussions on whether or not people with ASD exhibit grief and understand when someone has died and they will not see them again, please let me put in my two cents. In my house, the grieving process for two of the most important people in Devon’s life carries on to this day. There are weekly discussions about whether or not my mother and father will “come back” for Christmas, or Thanksgiving, or Devon’s birthday. There are episodes of crying because she misses them so much. As difficult as it is to hear how upset she is about this loss, I think it is wonderful that she is able to express herself so clearly and we can talk about all of the good memories we have and how much she and her sister meant to them.
And now for the house. There are only two places in the world that Devon has felt truly comfortable and less anxious. When she is at our home with her family and all of her “things,” and when she was at my parent’s house. It has never really been just a place we would visit; it has been more of a second home. We have never had Thanksgiving, Christmas, Birthday parties, Graduation Parties, etc. anywhere else. Their home was a more central location, could accommodate more people, and it was just a wonderful place to be. For almost all of Devon’s life, we would go there every Saturday to see Nini and Granddad. This was her place, and these were certainly her people.
After my father died, my sister, brother and I were able to have the house updated before we put it on the market for sale. The changes inside were pretty substantial. When we took Devon for what would turn out to be her last visit to Quincy, she initially refused to go past the front hall because she said this was not Granddad’s house, this house was broken. She sat on the front porch for most of the afternoon. It is a great front porch and she always enjoyed sitting there.
When I was finally able to get her into the house, we went upstairs to see the bedrooms and that was when she told the house she would miss it. This was what I had been dreading all along. This was not just the fact that now my parents were gone, or that the house would go on the market and we would no longer be able to visit. This is a total change of a way of life. This means that our options are now more limited than they were before. If you only have two places where you are comfortable, and one is gone, there is no way that could be considered a good thing. I am certain that some people would be able to adapt and make new opportunities. Life is not that easy for us, and I struggle to see this as a way to create new memories. The old memories were working.
We closed on the house September 29th. It is no longer our family home.
I am concerned about Thanksgiving. This will be the first real test of how the rest of our lives will go. It will be interesting.
Goodbye Nini and Granddad’s house. We will all miss you, forever and ever.

A New Chapter…

 

            In July our family began a new chapter in our lives…my 32 year old son with Autism moved from our family home into a group home. We knew it was time but the thought of it was difficult to contemplate… How would he react… would he think we were pushing him out??? How would we help him to understand and support him in seeing this as a positive move for him? Thought and emotions were flooding in…

We had begun to accept the need for our son to move from our home many months before the move. It is a process of coming to terms with this. It was hard to contemplate not having him at home with us. There had been no natural life progression, such as going to college, which leads to a son or daughter moving out of the family home. Beyond that, he will continue to need significant support throughout his life. It is a different journey when a son or daughter has a significant disability.

Once we accepted the need, we began the preparation process with a story about adulthood which was developed with the support of his counselor. My son has always done well with stories that have pictures to highlight the ideas presented in the story.   The pictures really help to draw his attention and keep him engaged as the story is reviewed.

We began the story with pictures of him as a baby, then a young child, then a older child, then a “big guy”, and then as an adult man. Seeing his growth visually helped him to understand the process of growing into adulthood. The story went on to describe what adults do..some have jobs, some volunteer, and they have various leisure interests. Then we introduced the idea that at some point, adults move out of the house that they have lived in with Mom and Dad. We described various living arrangements…some people live in a house, others live in an apartment or condo. Some people live alone, others live with roommates. Some people live alone but have staff that help them with things such as shopping, cooking and cleaning, and going for a haircut. All these were depicted using people he knew. Some live in a home with others and they have staff that are with them at all times. We related this to his knowledge of a group home he was familiar with. We gave the assurance that when an adult moves out of their family home, he or she still see their Mom and Dad, they will come to visit, and the adult will go home to visit also. They still celebrated holidays and birthdays together. Mom and Dad still love their adult son or daughter and that would not change.

Once we found a group home that would be appropriate and we received final approval from the state for his placement, he began to visit there. He already knew some of the people who lived in the group home, which was great! He had many visits which increased his familiarity and gave the staff there some opportunity to see his current staff interact with him. Pictures of the visits were taken, including pictures of visits to the local YMCA where he exercised on the treadmill. Exercising at the Y fitness room is something that he has been doing and so brought in an aspect of familiarity. Using these pictures, we created another story about visiting the group home. This story was reviewed with his counselor over several sessions. Repetition of the information with someone he had developed a trusting relationship with was very supportive to the process.

Once we had a move-in date, we created a story about the move, again with pictures of where he would be living. His room had been set up with a new bed that he tried out in the store before we purchased it. He loves it! He had the things that we know he enjoys and we felt would give him comfort as well as adding some familiarity in this new environment. This story was read with his counselor to help him process the move.

Meanwhile I had developed an extensive list of things to know about my son that would facilitate the transition. There are so many little things that needed to be communicated, things that we knew and that were very important for the staff that would be supporting him to know. I started the list and went back to it many times to add things as I thought of them. It was definitely a work in progress.

As his speech is difficult to understand for people who do not know him and have not spent time with him, I made visual icons of foods he liked and requested. I also created a visual schedule as his routines would be different in this new environment. A visual schedule would allow him to understand what was going to happen and to give some input to activities he would like to do. . I knew it would be important to give him as much information as possible in the format he could best access and understand (visual vs. auditory).Visuals he uses to communicate how he was feeling, if anything was hurting are crucial as we knew he would not verbally be able to accurately share this information

Several meetings were set up to facilitate the transition. My son was already known to other staff in the agency as the group home is run by the agency that had been working with him for many years. They read him well, understand his needs and know how to successfully support him. It was crucial that their knowledge be shared with staff that would be new to my son. There were so many little things that the new staff needed to know as he would not be able to tell them. Although he is somewhat verbal, his ability to communicate verbally for purposes beyond requesting specific things, mostly food, is limited. If he became anxious or had physical discomfort and they did not know how to read the signs and give him the visual supports that had been created to communicate physical pain or did not pick up his need to use sensory strategies to help him feel calmer, he would be left to communicate behaviorally.

All of the planning did indeed support a smooth transition. He has adjusted well, is comfortable and happy in his new home, and he has the support he needs to help him enjoy the good times and to safely navigate the challenging times.