Moving On - Literally

 September 22, 2026

Our family is having a big life change and just thinking about writing about it makes me emotional. 

RJC is going to be moving out of our home and into a group setting. She is moving into a house with two housemates and 24/7 supervision. The actual move is currently scheduled for two weeks (or so) from today and there has been a great deal happening over the last few months to get us to this point. It is a process that is full of paperwork, conversations, and emotions. 

Making the decision that the time was right to place her in a residential setting was complicated. Emotionally, keeping her home forever is where my heart is. However real life requires us to take into account real life happenings in order to come up with what is best for RJC. 

That is always the most important question when faced with difficult decisions: What is best for RJC?

This process started quite a few months ago in terms of considering what was available for her. We are grateful that we have found an agency that aligns with our values and goals for RJC.

Once we had confirmation of the agency, we had opportunities to get RJC involved in some community events this agency hosted. That was helpful as we could get her used to hearing the name of the agency and meeting some of the staff and other individuals who are with the agency.

Of course, there has been plenty of paperwork (not on my "Favorite Things To Do" list), but the agency and our caseworker, have guided us through everything. 

It has been a very emotional time for me. Admittedly, some tears at random moments, lots of conversations with my husband who has been a rock throughout all of this, and many heartfelt conversations with a dear friend who has been through the process. We have not told many people because we do not want anyone to say anything to RJC yet, and to be honest, I am concerned about somebody saying something "judgy" to us about our decision. 

We recently went shopping for her bedroom furniture and that was a big, concrete step. We bought a pretty set that looks nothing like the one she has at home. That was a purposeful decision. When she does move, we want her to clearly understand that she has still has her own room at home. Perhaps there is some overthinking here, but we are trying to do whatever we can to set her up for success and make the transition for her as easy as possible. 

The furniture shopping was a trigger for my emotions at an incredibly inconvenient time. While we were shopping the salesperson asked who we were shopping for and I got all teary right there in the middle of this large furniture store and I could not answer her question. She was so kind and brought me to quiet spot and handed me a cold cup of water. We sat down together and chatted a bit about families and challenges in general, while the others continued to shop. 

Today there was a two hour meeting with the team members and our family. RJC came for the end just in time to say hi and nab a cookie, but she did not have any understanding of why we were all there. We spoke about so many issues and verified the things we needed to see in the house for her safety and comfort would be getting done (e.g. alarms on the doors, painting, kitchen safety issues etc.). I gave them the medication and insurance information that they needed. We had a ton of questions, and all were answered. We left there feeling comfortable and reassured.

More to come...

September 28, 2026

Time is flying by! Her furniture should be delivered tomorrow, and I was able to meet with some of the staff who will be working directly with her. They were all very positive and looking forward to the opening of the house. I was able to share some stories about RJC and to also express my own feelings of being both grateful and nervous. Everyone seemed to understand and I felt like we started to develop a rapport - an important part of making this a positive transition for RJC. 

One evening, my husband and I were talking about the move, and he made a very good point about her needing more opportunities to visit before the move. We then discussed some of the wording we might consider and landed on a general message of, "You have three places where you sleep. Sometimes you sleep at camp, and sometimes you sleep here, and now you have a new place you can sleep!"

So here we are, 8 days from the official move in. This is a big adjustment for our entire family. It is always difficult to trust new situations because we have absolutely no way to know how she will react. I am very happy to share that we can visit and/or take her home or on vacations with us whenever we'd like. When she first moves, we will need to find a balance, so she has the opportunity to adjust to her new house.

October 1, 2026

We explained as best as we could to RJC that she was going to have a new house with friends and still have a house with mommy and daddy. It is difficult to know what she got from that conversation, but we thought it was important to try and plant the seed.

Today was RJC's first visit to the new house. I met her there with her long-time aide who knows her very well. It was...bumpy and she was loud and anxious. The best move seemed to be for me to leave and to let her aide work try to work it through with her. I was getting emotional myself and she was feeding off my emotions. 

I knew this would be complicated and I expected bumps in the road, but I still felt sad for her. I knew she was confused and anxious. By the time I got home I was in tears. A while later I received a text that she had settled down and was saying "Try again on Monday." It was a relief for sure. 

When she came home that afternoon, she spent a great deal of time with me and my husband trying to process everything. Language is difficult for her, and she worked hard to make it known that if she was going to this other house then she wanted me to go with her. We kept going over the concept of having two houses. We had to find the correct language to use and eventually she seemed to grasp the idea that at one house she had mommy and daddy, and at the other house she had her new friends. One thing that was really helpful was to remind her that "RJC goes to camp and mommy and daddy stay home." It was the best we had to offer and we have stuck with that explanation for the sake of consistency. 

It was important to her that we put some dates on the calendar showing when she would sleep at the house with mom and dad. This was tricky. We did not want to commit to anything. We had spoken with the professionals and other friends who had been through this process, and we understood that she needed time to stay at the house and get used to a new routine and new people. We picked Thanksgiving weekend as the first time she would sleep at home because over the years we have developed a routine for that entire weekend. It made her very happy to see that our plans for the weekend remained unchanged, and I could see her relaxing just a tiny bit. Our goal is for her to feel settled and used to her new routine and then we will bring her home with us for an overnight. Our hope is that in the future, we will be able to have her go back and forth between the two houses seamlessly.  That will take some time, and we will need to be patient.

Clearly, this is going to be a process. 

It is uncomfortable to think about their own mortality, but having an adult child who needs 24/7 supervision, who has never in her life been left alone, we need to think about it and plan for it. It brings us peace of mind to know that RJC will be well cared for when we can no longer care for her ourselves. We have two children and we want both of them to have fulfilling and meaningful lives. RJC is blessed with a sibling who is willing and ready to step in and care for her. As parents to both of them, we feel it is our responsibility to put a plan in place so that both our children have the support needed in the future.

There are so many emotions and so many details to consider during this transition. We have given so much thought to every decision, every step of the way. This is a new way of life for all of us. We need to find that sweet spot between letting her go and holding on, so that she knows without a doubt that we are always here for her. 

October 3, 2026 

It is almost 4am and I am in the living room. I have been awake since about 2am trying to read some silly story that does not take much brain power to read. RJC came out to the living room, and I sent her back to bed. She is now back in the living room and has turned on the television to check to be sure it is on the PBS channel, with the volume at 0 and that mute is on. Now that she has reassured herself that all is as it should be, she has headed back to bed. She did not acknowledge me at all. Simply had to verify that her world was as she expected it to be.

I have struggled with sleep for quite a while now, but these last few weeks have been especially difficult. I think about my gal and I try to imagine how this all feels for her and what we can do to ease the way. Things are happening that she cannot grasp. While she is now understanding the gist of it - that she will have two houses - she will never understand why.

One of the biggest pros during this time has been that she has had the experience of going off to overnight camp for two weeks at a time in the summer, and spending weekends there as well. When she started going to camp there were challenges. The first night she was there, she woke up sometime in the middle of the night and packed up her suitcase, ready to go home. I remember feeling both horrified and amused when we heard this. Horrified because I was concerned that she felt abandoned, amused because my gal takes charge of her own life and while she may not have the words to share, she is a take action kind of gal. When I think back to that moment, it reminds me that she is resilient and resourceful and that she will let us know, one way or another, if she is ok or not ok. The key is that the counselors gently helped her through this moment and not only did she stay at camp, but it was the beginning of many years of wonderful experiences. She now looks forward to going to camp and while it may have taken time to get to that point, I am so glad we did not give up. It is now a part of her life that she looks forward to, and I feel strongly that it has helped her know that she can have new experiences and adjust to new circumstances and new people, and that it can be a positive in her life. 

We've learned through the years that we cannot give up at the first sign of her expressing rejection or frustration or anger. New things are difficult for her partly because we cannot explain "why" certain things may be happening. How scary and confusing is that? But experience tells us that when she sticks it out and it is the right situation with the right people, good things happen. She makes connections, she has fun, she learns things, she grows in her independence, and she picks up new skills. 

As a mom, this is the most difficult thing for me to do. I want everything to be comfortable for her all the time. I hate to watch her struggle, and I have huge mom guilt when she wants me to be with her 24/7. At various times throughout the years, we have thought about residential placement. We knew it was going to need to happen at some point, and now, here we are. While I may be nervous and jittery, I am also so happy for my gal that she has this opportunity to grow and start to live a life that is more independent yet still fully supported. 

While I may currently have sleepless nights and lots of ice cream, I know that this is the right step at the right time with the right people for the right reason. This is not a decision made lightly. It is a culmination of years of conversations and listening to other people's stories. It is an act of love and concern for our gal. We are putting aside our own egos and our own inclination to keep her in our little bubble, because the fact is that she needs 24/7 support and someday, we may not be here on earth to be the ones to provide that. With this move, when that day comes, she will already be in a place where she is settled and comfortable while also having the support of a caring and loving sibling. The thought of that eases mind considerably.

So, on we go. She'll be officially moving to her new primary home in four days. There have been many meetings, phone calls and emails, as we have tried to prepare things for her as best as we can.

Now this mama needs to pull herself together because there are still things that need to be done.

Bring on the ice cream!

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October 13, 2026

The furniture was delivered with no issues and RJC moved into her new house six days ago. So far, it is all is well. I realize this may be the "honeymoon period" but I choose to be optimistic as she does appear to be quite relaxed and comfortable. The agency has been very thoughtful throughout this process. One of the main things she does at home to relax is to sit in "her" spot, put her feet up and spend time on her iPad watching various videos and endlessly updating her calendar. The house has a "spot" for RJC where she can do just that. She is a happy gal. She also still has her Day Program with her aide. I believe that this consistency has been a major key to her success so far. We are so grateful for everything that is coming together for her.

On the third day she was there, we picked her up and took her bowling in the morning and then we were out and about in the afternoon. I was nervous about bringing her out in the community and then back to her new house, but she hopped out of the car, went into her house and that was that.

This weekend we will again pick her up on Saturday for a few hours. On Sunday the plan is for her and one of her housemates to go to a community event. My husband and I will be there at well, but she will be with her staff and housemate. I am excited to see how she does out in the community.

October 21, 2026

The two week mark. RJC is doing great! She is happy and relaxed and the agency and staff have done all they can to continue her involvement in the various activities that she enjoys. We have taken her out for a few hours at a time and each time we take her back to her house, she is all smiles. 

It has been an adjustment for me. 

Example 1:The other day I had dropped her off at her house and I was driving home. Usually when RJC is in the car with me, she is my tour guide. She will narrate what she sees. "Oh, look, it's a fire truck." "There is a big green truck." "I see a boy holding a chicken" (that is an actual quote and when I looked, there was indeed a boy holding a chicken). In any case, I was close to home and I realized that is was very quiet in the car. 

Me: "RJC, are you ok?" No response. "RJC, are you ok?" (a little louder) but still no response. I'm nervous now as I readjust my car mirror to be able to see her in the back. She isn't there and I have a moment of panic while I go through the morning in my head, and I remember that I dropped her off at her house. Jeez. I was so relieved. 

Example 2: My husband and I are in the kitchen. He uses a knife and leaves it on the counter.

Me: "Babe, you need to put the knife away." Husband (kindly):"Actually I don't." I pause and then, "Oh. Right." And I had to laugh. 

So yes, this will be an adjustment for all of us. 

It has been over thirty years of advocating, paperwork, making changes, appointments, lack of sleep...the list goes on. We have found ourselves in difficult and frustrating situations, but we have also experienced incredible joy and relief when we navigated those situations successfully. We managed to stick together as a family and to stay true to the path we wanted to take, which meant balancing hope and optimism with reality. We learned who to trust and when to make a quick exit, how and when to speak up, and the importance of trying new things a few times even if the first time did not go well. We grew as parents, we grew as a couple, we grew as individuals. Along the way we met so many amazing, resilient families and individuals, we had many interactions with strangers, some that went well and others not so well. We became active in various special needs organizations both as participants and as volunteers. All of those experiences contributed to the growth of RJC and we are so very grateful. 

This is a new chapter for our whole family.

RJC is ready to fly, and we will be cheering her on.

Hope you'll join us :)

A Hard Won Communication Win

This morning I was having a conversation (well, more like a brief verbal interaction) with RJC.

She clearly wanted to tell me something, but I was not understanding. I asked a question for clarification, but she didn’t understand me. I rephrased my question and she stared at me for a minute and hesitantly and slowly responded, carefully choosing her words and I could literally see her concentration. I gave it a minute to think it through and then repeated back to her what she told me in my own simple wording.

She was so happy.

She shared something that happened and I understood and acknowledged her.

A reminder that while she’s come so far, communication is truly a huge struggle.

For those wondering, she was apparently getting a glass from the cupboard and knocked it over but caught it.

Kind and Thoughtful

 This morning was a complicated one. Every Sunday we go to do our weekly grocery shopping. As there was a big winter storm headed this way, we did most of our shopping on Saturday. We saved a few things to get today, Sunday, so RJC would still be in her routine and so that she had the opportunity to be out of the house before being snowed in.

We got to the grocery store quite early, as the news showed that the snow would not begin until 11 AM. 

Side note: the snow came earlier than expected and it was snowing when we left the store. A reminder that Mother Nature does her thing when she's ready.

Back to our story - the store was not particularly crowded but there were other customers there and only one register had an Associate working. I am not a huge fan of self-checkout and while I will use it occasionally for a very small order, we had a few items, so we decided to wait in line. 

The line was moving along but too slowly for RJC who was getting antsy and loud. That happens much less than it used to, but I think she was feeling anxious, probably picking up on my own anxiety about the snowstorm. So, she would yell, then hold her hands over her ears and say, "too loud." In general, she says that because she knows she shouldn't be yelling and she's self-correcting. She will get into a cycle of yelling and self-correcting, then apologizing to me. She will do this quite a few times and eventually, once I have reassured her enough times, saying "It's ok, RJC" she will calm down. So here we were, stuck in the screaming cycle.

A few minutes later, RJC calmed down. Shortly after, an employee at the store told me that she went to the front desk and asked them to lower the music, as she thought it may be bothering RJC.

How kind and thoughtful is that!  

I was so touched and impressed that she recognized this behavior and acted to shut down a possible trigger.  For sure, sometimes when music is too loud, it does trigger this behavior. Though I am not sure that was the case in this situation, I simply thanked her and reinforced her kindness. Though it may or may not have been the case in this particular situation, clearly it could be in a different situation and//or with a different individual. She also let me know that any time we were in this store, if the music is too loud, we could go to the front desk and ask them to turn the volume down.

It is people like this, who cross our paths, that we are grateful for. It is complicated enough to be out and about and never be completely sure what will be.  To have somebody proactively come up with a possible solution to a difficult situation, instead of making a judgement or doing the "stare and glare" that we have experienced more often than we should have, is such a relief. Truly a load off of our shoulders.

I hope you all are enjoying the day wherever you are, and that if the time should come that you need a bit of grace, it will be granted. 

AND you will recognize it for what it is.

A Last Minute Change of Plans

We live in an area where winter includes snow. This means that sometimes we are stuck indoors, as driving in freezing rain or snowy weather is not comfortable for me. I do not even like being a passenger. Unfortunately, the ramifications are that we may have something scheduled that we cannot attend, requiring us to cancel or change the date. My original plan was to try to put off the decision until I saw what the weather would actually be as we got closer to the time we needed to leave the house.

It was quite a long morning of back-and-forth conversation, with me using terms like, "maybe" and "let's wait." RJC came to sit next to me on the couch where she could focus soley on me and not be distracted by her iPad. This was a very intense exchange. Eventually I could see she had gone from trying to understand, to feeling agitated as she was moving closer to me, and at that point I realized that it was kinder to simply cancel and reschedule. For her, even when I had her look out the window and I called her attention to the snow piling up, the terms "maybe" and "let's wait" were too abstract.

I give her huge credit for not getting loud and that she did not hit her arms or face. She was really trying to understand and trying to get me to understand her. 

I told her she could pick a new date, and she chose one in the summer. That took me aback for a moment as I thought she would want to go as soon as possible. Then it dawned on me that in the summer there is no chance of snow, and my gal was not going to take the chance of being disappointed again due to winter weather. 

RJC is both logical and smart, and it is always an amazing pleasure to watch her figure things out on her own and handle change and disappointment in a more appropriate way than in the past. 

Never Know What to Expect

We never know what to expect from our gal when something new is happening in her world.

We are having both of our bathroom showers and tub replaced. We did the small shower stall in our room first, which is in the back of the house. RJC doesn’t use that bathroom, so though it took a bit of time for her to get used to the comings and goings of those working on the bathroom, it did not directly affect her routines. She was also out of the house for the bulk of the work though there were days that she was home for a few hours while work was going on.

It took about 7 business days to complete the work (give or take) so it was important that she was able to tolerate the noise and the general tumult. She had her headphones on when they were here and that was very helpful. They also always said hi to her and if she said something first, they always acknowledged her. It was a very positive experience.

Today they started in the main bathroom in the hall, which is the bathroom she uses. Last night I took her to our bathroom and showed her the new shower and said, “Now it’s Rachael’s turn for a new bathtub and shower.” At first she said, “No thank you” but we explained it would be pretty and new. Not sure she really understood.

This morning, I reminded her that “her friends" are coming to work on the new bathtub and shower. Luckily when they arrived today, they were the same people who were here for the other shower, and she showed no signs of anxiety. I had moved her personal toiletries to our room and amazingly she was completely cooperative this morning, following me into the small bathroom without an issue.

I admittedly stressed a bit over this last night but our gal rose to the occasion like a champ!

All we can do is prepare her as best we can and then - we hope.

Today was a win!

s

A Few RJC Moments

 Life with RJC is unpredictable. She is so funny and smart and definitely has her own way of thinking. Conversation can be tricky as she has her own unique way of expressing herself (grammar is challenging and limited vocabulary) and she struggles with receptive language (abstract concepts are especially difficult and again, limited vocabulary).

 But in the end, we get there.

So here is a look at a few of our interactions that occurred over the year: 

1. RJC is on her iPad this morning.

RJC: “Can we go on a Safari Brazil?”

Me: Um, no. Sorry.”

RJC: “Grandma’s house!”

Me: “Yes. That we can do.”

She doesn’t acknowledge my response - just goes back to her iPad.

RJC loves large animals.

She will randomly list them off: cheetah, jaguar, elephant, giraffe, alligator etc. She often mentions “Safari” which she learned about from videos and from her multiple experiences on the Safari ride at Disney World (which I think she thinks was an actual Safari). She is drawn to traditional African clothing and likes to play bongo drums.

I am glad that she has enough skills to find videos related to Africa and safaris. An actual safari trip to Africa, with the long airplane trip, heat, and unfamiliar foods, loud noises and smells, would be stressful and would not fulfill her imagined version of what it would be. Add to that the dangers of being outdoors with large, wild animals. I shudder at the thought of her getting excited and trying to pet one. Yikes!

It is fun to catch glimpses of things that bring her joy. There is a bit of sadness for me that this is not an adventure she’ll have in real life, but I am happy that she is quite content with her internet visits.

2. We have been going to the same bagel store for many years and RJC is a favorite customer there. Weve known the owners for over 25 years so they know our family well.

She’s off to camp this afternoon so we stopped by the bagel store to pick up bagels to bring with her.

She finished her bagel, then got up from our table. She went up to counter, shook one of the gal’s hands and said, “See you on August 17!”

When we got to the car to head home, she insisted that we put the bagel store on our calendar for August 17th.

Our gal is a planner!

3. RJC was super excited to get new white shoelaces.

RJC: Mommy, take a picture of shoelaces please.

I get my phone and have her stand up. I lean over a bit so I can point my phone directly down at her shoes.

RJC: CHEEESE!

I couldn’t help it - I literally laughed out loud.

*******************************************************************************

 

Sigrid Bruk

Flexibility Success

 Every morning for many many years, RJC enjoys a plain bagel for breakfast. She used to like it toasted with cream cheese, but recently we bought a new toaster that she does not like, so she switched to not toasting her bagel and using butter.

Today we were supposed to go to the bagel store to pick up a fresh new batch of plain bagels for her, however my car is being looked at today (UG) so I preferred not to take her in it. I decided I was going to explain to her that we could not go to the bagel store today. I was not looking forward to this conversation.

We almost always have some bagels in the freezer. Hal keeps his bagels there but he did not have any plain ones. 

Sometimes RJC has plain bagels in the freezer. They are there because for whatever RJC reason, they have some perceived flaw. Most often they have too many air bubbles.

After a conversation with her about the car being broken (along with exaggerated sad faces on my part to help her understand) and a great deal of very close inspection on her part, of the bagels in the freezer, she was willing to take one from the freezer! 

We now have the bagel store on our calendar for tomorrow and she is currently back to her morning routine, and not obsessing over the issue. 

A major step in flexibility! I cannot stress how amazing this is for her to work at understanding what I was telling her and then to problem solve on her own - with NO negative behaviors! Not a one! 

A big step forward in receptive language and problem solving. 

So proud of my gal this morning!