SAILING AHEAD

A mom’s perspective of developing an independent housing  solution for her loved one.

Chartering the Course

Preface: The following journal has been written by a parent for parents.  It outlines finding a group of parents with which you can create a community for yourself and your loved one.  It is the hope that within the community you create and nurture, you will find the support your family’s needs to create a “right size” housing solution for your loved one. It identifies how to find and work with partner families.  It will provide you with some framework for tackling support hours, budgets and schedules.  

Each entry has a heading which identifies it’s relevant content.  You find find

1. PARENT GROUP/SAIL
2. PARTNER FAMILIES
3. SUPPORT
4. PARENT PERSPECTIVE/REFLECTIONS
5. ABOUT THE GIRLS
6. OUR DAUGHTER

Although this is not YOUR guide, I hope that the shared insights on my experience will be helpful, maybe a little humorous, and ultimately inspiring as you start a journey with your loved one.

PARENT GROUP

Spring 2019-With the assistance of a local church and a non-profit, 10  families met who shared the common goal of launching a loved one.  Plans are made to attend Center for Independent Futures, a non profit organization that educates families on how to become architects of their solution.  The  training took place  in Evanston, IL. There are 2 girls and 8 men represented in the group.  My daughter is one of the 2 girls. 

PARENT GROUP 

July 2019-The 10 families attend Center for Independent Futures  training in Evanston. (https://independentfutures.com) This is a structured 2 day course led by a team of experts that have helped other groups develop a variety of  housing solutions for their loved one.   We had an opportunity to get to know the other families a little better, have our  heads filled with an overwhelming amount of information, and most importantly, fill our hearts with hope that a solution is out there.  We will just have to put in the work.  

PARENT REFLECTION

As we toured the homes of differently abled adults in the  CIF community, I was struck by how independent these individuals were. They are working, taking public transportation (and in Chicago that is no small feat)  and engaging in their community.  It’s amazing how much of their lives are not managed by a parent.  Will there ever be a time, realistically, that I am not managing my daughter’s life and encouraging her to live my vision of her best life?  Time will tell.  I feel that if I am committed to the outcome and keep the eye on the prize of launching my daughter, much can be accomplished. 

(Picture is of one of the duplexes in Evanston that houses CIR participants)

PARENT GROUP/PARENT PARTNERSHIP

Sept. 2019 There are scheduled monthly meetings with families who attended training.  A variety of topics are discussed like developing a mission statement, our shared values, and meeting organization.  At our September meeting, D (the mom of the other young lady)  suggests getting our daughters together.

PARENT PARTNERSHIP

Oct. 5, 2019- Our plans for lunch for our daughters  ensue, and D and I are so excited. This is the first step in forming community within our group.  And low and behold, R and T have known each other for years through Camp Skyline.  We enjoyed a great lunch and T looks forward to our next get together. 

PARENT GROUP

Oct. 2019 We are still meeting monthly with families who attended the CIF  training. We have continued conversations about the group and the goals. We name our group SAIL, Solutions for Adult Interdependent Living. 

SAIL 

Nov. 2019 Part of our package with CIF includes a second training session in MIchigan.  This is a 1.5 day training. At this meeting, we share what we have accomplished since we left Evanston. 

PARENT PERSPECTIVE/REFLECTIONS

REFLECTION: Although I enjoy meeting with the families that attend the training and are part of SAIL, I wonder if the answer for our daughter is here. The other family with a daughter lives in another county so even if we were able to form a partnership, it can’t work because the girls live in different counties. So although I am learning a lot, and having a number of theoretical conversations, for me, the needle is not moving. My husband, who was not able to attend the Evanston training, has attended about half the meetings.  He doesn’t understand how families, who are committed to having their loved ones live close to the family house (and the families don’t live anywhere near each other)  and have varying timeframes, can create a common solution to housing. He continues to ask this question over and over and I don’t have an answer.  

SAIL 

Dec. 2019 Another monthly meeting with families who attended training. As a group, we do research on IDD housing models. We share information with the group about the benefits of each model 

AS A PARENT

REFLECTION: I am feeling a bit antsy.  I am not quite sure if we are getting T any closer to launching. This is probably due to the fact that when things happen quickly, it’s sometimes too slow for me.  

SAIL /A PARENT’S JOURNEY

Jan. 2020-Continuation of monthly meetings. I commit to the group at the meeting that I will move my daughter out in Fall of 2020.  To me, it seems when you put it out there, it becomes real and not just a hypothetical  event in the far off future.  So…it’s out there. I am asked if I have a plan?  Do I know where?  Do I know with whom?  And my answer is that  I have  no idea but I am committing to moving forward. 

SAIL  

Feb. 2020-Continuation of monthly meetings.

PANDEMIC 2020

March 2020-Covid hits.  Planning and meetings suspended.  It seems that at this point, the world is just praying to stay safe and  isolating to take care of themselves and their families. We are in a state of suspension without answers.

SAIL 

May 2020-Zoom, a  word used mostly to describe magnification up to this point, but it  is now the most used word in the world.  We are able, through zoom, reconnect with our group.  It is great to see everyone and hear that all are in good health.  As a group, we decide to restart our meeting via zoom. 

SAIL

June 2020-At the first Zoom meeting of the group in a few months, it was determined that geography would require us to pursue 3 separate neighborhoods…., Troy, Rochester, and Northville. We arrived at this conclusion based on our loved ones connection to their communities, programming, church, jobs, etc.  We elected officers for our group.  

We connected with Integrative Neighborhoods (I.N.) of Oakland County to discuss their model and the progress.  They have a few young men living in apartments and are pursuing a Community Builder for the residents who will oversee social activities for the boy.  We discussed possibly merging with the group. 

PARTNER FAMILY

June 2020-We begin discussions with the other family who have a daughter, about the girls living together in an apartment. (The M family has relocated to Oakland County thus making a partnership possible.) The location as to where the girls will live  is not determined and at this point, that’s not mission critical.  M’s live in a Troy Apartment and the options of having the girls be on the same campus is very attractive.  The M’s can be close to girls and possibly provide first response support. 

SAIL/PORTS/PARTNER FAMILY

July  2020 

The large group of 10 families begin to break out into separate geographical groups.  PORTS are established in the Rochester, Troy and Northville area.  Conversations with M’s and us  continue. The launch of our daughter  becomes much more real when you are actively working with other families.  The possibilities of the girls living together is truly exciting.  The fact that the parents have similar visions to launch their loved ones and the community at large makes the journey a little easier. 

As we meet as a PORT, we discuss ways to help each other and those that will come behind us.  We try to create documents and roadmaps and  journal or accomplishments. 

-Another family has decided that their loved one,  E would like to be a third roommate with the girls. All the girls know each other.  Woohoo!!!

Girls begin to socialize a bit, mini golf, lunch, zoo, nature walk but since we are still in the middle of a pandemic, getting the girls together and getting together with the parents is a challenge. Thankfully, the girls have a shared history with camp and some of the normal awkwardness that might take place with new friendships is nonexistent. 

SAIL

Fall 2020-The possibilities of our group merging with an existing 501C3 is discussed.  This partnership doesn’t develop. 

PORT

Oct. 2020 We take the time to talk about bringing new members on board and what that process will look like.  We continue to refine a roadmap for our group and edit as we go. 

SAIL/PARTNER FAMILY

Oct. 2020 D has spent time creating some many wonderful useful tools for others to start a launch.  Ready to launch documents are circulated amongst the partner families to understand what is needed to prepare for a possible Spring move out.  We announce to the group that the M’s and the R’s and another family have plans to move forward and launch their daughters. 

-A Zoom call is scheduled for our partner  families to begin discussing steps forward. T’s health issues are discussed openly for families to understand her condition which requires food to be secure and not openly available.  At this time, we  allow for the possibility that one or both  of the girls may not be comfortable with food security and restrictions that may be placed on their daughter.  With grace, the families express no concern and no reservations about moving forward.  

-Families discuss a whole slew of topics.  

-Documents are developed that include schedules for the girls, when they are in and out of the apartment to understand support needs. 

AS A PARENT

REFLECTION: Feeling like the work needed to launch a loved one is being done on a port level.  The “HOW” to get something done is discussed and “WHAT” we can do to help others is a game changer.  It feels like we can get loved ones launched at this level.  

PORT/PARTNER FAMILIES

Nov. 2020 Port families Zoom with parents of a young lady who is currently living in her own apartment with her boyfriend.  The adults use On My Own for social activities. This meeting is beyond encouraging.  To see IDD adults living independently is inspiring.  We decide to see the apartment after the holidays.

The partner families decide to meet monthly to develop and work plans to launch their daughters. Families are committed to working together to launch the girls.  

Girls begin weekly zoom calls. 

PARTNER FAMILIES

Dec. 2020 The possibility that an apartment on the campus where the M’s live is discussed.  D provides us an update that the apartment directly across the hall may become available early summer.  How great would it be if the girls had parents across the hall for their first independent living experience.  And how great for the partner families that there is “In Case of Emergency Support”  20 feet away. 

As a group, we have many focuses.  One of those focuses is developing a  self funded model which includes encouraging parents to become certified support staff  to support the girls in the apartment.  The exception is that you are not able to support  your own child.  We are trying to achieve a fully staffed, self funded model and we believe encouraging volunteerism will help create this model and promote sustainability simultaneously.  

PARTNER FAMILIES/SUPPORT STAFF

Jan.10, 2021

Girls continue to Zoom every week. This is just a beautiful occurrence. My daughter sets up the calls and sends out invites.  It’s become part of their Sunday night routine. 

Parents meet to discuss support hours, and what is needed and  who needs what. We have started to talk about budgets as well.  These conversations are targeted but allow us all a chance to get to know each other better and understand their daughters and their needs.  Each meeting has an agenda.   Also discuss budgets.  We develop action plans. My goals before the next meeting are  

✓to connect with nearby Church Program supporting IDD

✓ to outline for the parents what is required to become certified support staff. 

All families work on health presentations and info about their daughters.  Next meeting is set for 1/31.

PARTNER FAMILIES/SUPPORT/TECHNOLOGY

Jan. 13, 2021 Simply Home (https://www.simply-home.com ) presentation about technology is attended by The R’s  and D. Using technology  could minimize staff for some and allow for maximum independence. 

AS A PARENT

REFLECTION: So many meetings, so much to discuss and plan.  In a very strange way, ZOOM  and google meet have allowed us to meet frequently and get things done in a very efficient manner.  Connections are created and the virtual meetings are strangely convenient. 

Jan. 18, 2021- Parents meet with Supports’ Coordinators for the first time.  Great meeting with R’s  and E’s coordinator (CLS) and T’s coordinator (MORC).  The supports coordinators were energetic, excited and whole heartedly willing to be part of the process.  The supports coordinators  will work together behind the scenes to review the Person Centered Plan (PCP)  to ensure that we identify  and include language for shared hours while preserving hours for each individual to work on goals.  We spent about an 1.5 hour together and the result was a feeling that we can do this because we have a plan.  One might think I was overwhelmed, but it was the opposite. Once I have a plan, I feel a sense of relief.  We will meet again in 3 weeks to discuss next steps.  This active planning and conversation is energizing…..need to find a another word for energizing….hopeful!!! 

At this meeting, the parents discussed how they plan to become support staff for the girls that are not their daughter.  The supports coordinators did not bat an eye with this suggestion.  

Discussed: support people, schedules, master book with info on girls, emergencies, food security. Supports coordinators had left meeting with tasks, a commitment to talk amongst themselves and to seek support from their supervisors when needed.  

AS A PARENT

REFLECTION:  It seems that so many of the tasks for our loved ones are complicated and we hit more walls than we thought possible. However, when you have a plan and you break things down, those things that were scary and insurmountable become manageable and actually triumphant.  Well….maybe triumphant is a little stretch but you do feel a sense of accomplishment.  

ABOUT THE GIRLS

Jan. 19, 2021 Parents are working on “All about____” power points and R’s mom has set the bar pretty high.  But in the spirit of not reinventing the wheel, we will use this format to present our daughter and include “like” information.  We won’t use R’s pictures but this was a great effort by R’s mom to get to know her daughter with realism, humor and grace.  Great job!!!!

PARTNER FAMILIES

Jan. 20-  As you can see, tasks are being identified and work is getting done more quickly and we are working on a plan,  and working the plan as swiftly as possible.  Today’s T’s dad is editing  T’s “All about T’s”  presentation.  

SAIL

Working on a simple overview for parents on Accessing Assistance and Caregiver Ideas.  These will not be complicated documents….just simple outlines for us to have on hand if and when people contact us about the process. This is great at the Port level as well  because it can help guide conversations with new families.  We are attempting to use an  approach which takes overwhelming tasks and makes them  bite size pieces. 

AS A PARENT

REFLECTION: Although we are moving quickly, I can’t help but wonder what our life will be like when T moves out. Because both our children are developmentally delayed, we have embraced, welcomed, loved every milestone because the occurrence, the event,   was the triumph, not the when. In those times of worry, apprehension, concern, for T and for us, I have to keep telling myself that we are doing everything to create as much success as possible. 

SAIL

Jan. 20, 2021-Caught up on all the Ports, and our SAIL group agreed  that we would become a non-profit. We invited Kathy from CIF Chicago to  attend this particular  meeting.  Kathy was very complimentary that the group has sustained and is continuing to work together in spite of pursuits of different solutions and Covid.

IDEA:  Can we change caregiver/support staff to SUPPORT COMPANION?  Need to come up with an alternate term than staff and caregiver…….

We should  come up with an Apartment name (just like a ship) and call our staff TEAM ____! That’s right…. We are a team.  Much more modern.  And our staff can be SUPPORT COMPANIONS  or something equally as inviting and modern.  

SAIL 

Jan. 23. Retreat. Group/regroup meeting.  We have had a few difficult meetings, as individual members’ vision for the group is diverging. We have focused so much energy and attention  on the organizational structure of the group that we have not spent as much time talking about the good we can do for each other and the community at large.  We decided that a Saturday retreat would help refocus the group.    SAIL decided on pursuing Friendship Connect and Housing Solutions Initiatives for the year. We have divided into 2 groups to focus on these initiatives.  

AS A PARENT

Jan. 29, 2021

T and I shopped for apartment goodies. We had a  great day and enjoyed picking up much needed things for the apartment.   So much fun atHome Goods. 

AS A PARENT

REFLECTION:  Having never sent a child off to college, the experience of helping to plan for a dorm room or anything necessary to prepare for independence was unavailable to me. I truly enjoy planning and shopping and creating beautiful spaces so to spend this time with T to plan and prepare is a precious gift.   

THE GIRLS/PARTNER FAMILIES

Jan. 31, 2021

We had our monthly meeting with parents to discuss safety and security.  Included in our discussion was 

1. Grant applications with MORC/CLS and other possibilities to support technology in the apartment.  Reviewed Grand Care and it’s offering. https://www.grandcare.com
2. D created a “WHAT IF….” document that preps the girls for situations.  Love this! Post meeting, we ran some of the”what if….”  scenarios by our daughter and we were really encouraged by her answers. We had fun with T and we realized that   she  learned a lot through post high and other training. 
3. One of our SAIL/PORT members has offered to work with the girls on house guidelines.  She will pop in to one of the upcoming Zoom calls and introduce herself.  We will  set up a more formal meeting to discuss guidelines  for the apartment.  

THE GIRLS

Feb. 1-Watched a GrandCare video.  It’s exciting to see all the possibilities that this company and companies like this can provide.  

 We are optimistic that we can use technology in some way in the apartment to promote maximum independence. 

Worked on “What if…”  with T and she knows a lot about how to manage situations.  She wasn’t quite sure what a land shark was when her dad introduced it but she now knows to not let a landshark into the apt!  T did a great job troubleshooting power outages, tornado plan, unplanned repairman, strange smell.  More What if’s to come but this was an awesome document. 

OUR DAUGHTER

Feb. 2-Groundhog  Day and more winter. 

It was recommended to me to reach out to Adult Home Health, which I did  today and all services are complementary to those services that would be outlined  on your PCP, meaning you cannot overlap services. It does not appear that  any of the girls would be an appropriate  candidate for these services as you need to be unable to bathe, or eat, or dress without assistance. I was under the impression that individuals that are providing these types of services are more skilled and as such, are paid more.  Such is not the case.  These high skilled individuals are paid the same as other caregivers, which is not a living wage.…. so sad. 

I am connecting with someone who can educate me on training to become support staff. It is  a relatively simple process to become a certified caregiver for an unlicensed type situation which is not high need, 24/7.  The girls will need support, but not round the clock.  More on that later.   

I also have a few leads on support staff that I will reach out to today. 

UPDATE:  Support staff person has an interest in continued conversation.  

SAIL 

Feb. 3-We met  last night to discuss SAIL’s Friendship Connect.  There was no shortage of great ideas and great conversation.  It is so heartwarming that the group wants to connect people to people and  foster community.  We are looking at platforms that are already established, like Facebook, that can help us with proof of concept. We discussed how kids can get together socially.  It was observed that we have many organizations that host community events.  We will explore the possibility that the SAIL families could meet as a group at one of these community activities and SAIL  could plan our own events. 

THE GIRLS

I spent some time buying a few things for the girls apt.  D put an apt.checklist together for the girls which is another great tool.  As parents, we can check off things as we go.  

THE GIRLS/SUPPORTS

Feb. 4. Upcoming Meeting with Supports Coordinators  We are planning an agenda today and reviewing notes from the Jan. 18 meeting.  At this point, we are trusting the supports coordinators to figure out how shared hours will be billed as the girls use different agencies for support services.  We will need to ask about the referrals  the supports coordinators have sent to staffing agencies for support for the girls. Although we are willing partners in recruiting staff,  we need to explore all avenues in order to always be staffed up, including asking supports coordinators for their assistance and referrals. 

AS A PARENT

REFLECTION:  A friend asked what the plan will be if this doesn’t work? I have never thought about an unsuccessful launch. We have tweaked so many things for T  at school and for activities and at camp and at work, that adjustments are just part of our process. Have to, have to, have to keep it in mind that we will have periods of adjustment, cohesiveness, dissent and bliss!!! The goal is to have more bliss than dissent!!!

SUPPORT

Feb. 8-Supports Coordinators  Mtg. 

We discussed technology quite a bit and the need to identify what problems/areas of concerns we are trying to address/fix with technology.  The girls will all need to revisit IPOS/PCP to access more hours for independent living, identify additional areas of support required and what technology can address. 

As parents, we  have spent time identifying those things that are most concerning (and I use the word concerning instead of terrifying) and how technology can address these concerns. 

THE GIRLS/PARTNER FAMILIES

Feb. 21-Parent Meeting

Our conversations continue to be honest and thoughtful.  Everytime we finish a call, the confidence and willingness to be solution driven is energizing. As each of the girls have different “abilities”,  we look to capitalize on those abilities to help the others where they might need help. A couple of action items from the meeting are: 

a.) timeline for apartment launch

b.) an agenda for Girls’ Zoom calls

AS A PARENT

REFLECTION: I realized after a conversation this week, I have spent a lot of time talking about my vision for my daughter and what I think she needs.  Rarely, have I engaged her in the process.   The reframing of this perspective began this week with our daughter telling us what she wants and thinks she needs. There will always be some “Illusions of grandeur” when it comes to my daughter, but we will strike the balance.

THE GIRLS

Feb. 24-Move Out Date Set

⭐⭐⭐Game on!  This is no longer theoretical!  We have a date of July 1. Much to get done but we have used the lockdown time effectively and we will be ready, rather the girls will be ready.  Finding the team members is now front and center.  I am emailing all my friends and all our family in hopes that someone knows a student, a teacher, a nutritionist, or just someone hoping to be part of something good to work with the girls 4 nights a week during the dinner hour.  We are continuing to discuss how we can use modern technology to help the girls live the fullest, most independent life possible without compromising safety and security and while avoiding the feeling of isolation. ⭐⭐⭐

SUPPORT

Feb. 25-Support Coordinator conversation

Although our supports coordinators  are able to meet with us as a group, there are questions that our supports coordinators have for the girls that are unique to each of the girls.  You think adding a piece of technology to the apartment is as easy as  going to Home Depot and picking up a keyless entry, but nope! Nothing is easy!  A behavior plan has to be developed to install certain technology and you have to make sure you are not infringing on the rights of your  roommates to live their fullest, most independent life with a piece of technology. And, objectively this all makes sense but when you actually have to wait for more meetings and more paperwork. It’s frustrating. 

TECHNOLOGY

February 28, 2021-  We spent time talking to D’s sons who are computer engineers to discuss technology in the girls apartment.  Our conversations leads to  with the following options:

1. Use a company like GranCare or Simply Home
2. Buy an off the shelf HUB and compatible devices like motion sensors and ring doorbells and “Do-It-Yourself.” 

We will do the research on the DIY option which is a bit exciting. 

THE GIRLS

Feb. 28-Girls Zoom with Mentor

This could not be any more awesome.  The Girls have a Course they can follow. They have some structure to their calls.  Mentor says the girls are awesome.  

PARTNER FAMILIES

March 1-Review of Parent Timeline

In order to continue the momentum, as parents, we have action items which we have assumed to stay on our course.  We need to make sure that we are getting our assigned action items done.  Also, we need to have continued conversations with supports coordinator on behalf of our daughter. 

I finally sent out an email to friends and family looking for a person to work a few hours every evening with the girls in the kitchen.  Food safety, kitchen safety, and food security are  areas of concern for the parents.  I am casting a large net here to see if anyone knows anyone who knows anyone.  We will consider hiring someone through an agency but sadly, I am not super optimistic about this avenue. 

TECHNOLOGY

March 2-Connected with Simply Home today to investigate technology that is available through them for the apartment.  An intake form is required and an interview for Simply Home to  make an assessment on what technology might be appropriate.  This will take place in the weeks to come. 

THE GIRLS

March 10- Individual conversations are taking place with the girls supports coordinator.  As the girls receive support from different agencies, the question of shared hours and how to bill becomes a question.   Supports coordinators are working to find an agency who might have staff for the needs of the apartment.  We will continue to put a great deal of energy into finding appropriate staff.   No response from family and friends.  

THE GIRLS

March 14- Sunday night and it must be Girl Power Zoom Call.  Girls present “all about me” presentations and our friend helps them chat about house guidelines.  

PARTNER FAMILIES

March  15-Meeting with Supports coordinators and Staffing agency.  It was Productive meeting tonight. The owner of the staffing agency,  with whom the Supports Coordinator have connected,  feels confident that he can address the shared hours.  We will, however, cover all bases and continue to look for staff. . The staffing agency will ensure there is staff available even in the event that someone does not show. It was flagged at the meeting that when hiring staff on your own, should someone not show up, we don’t have a plan b.  Our plan B  or  safety net will be to have parents become certified support staff. For someone to become certified, the following certifications must be obtained. 

CPR

First Aid

Recipients Rights Class (Oakland)

Bloodborne Pathogens

Cultural Competence/Diversity

Limited English Proficiency

Criminal Record Check (GT Independence)

Proof of Auto Insurance (GT Independence)

Drivers License Check (GT Independence)

THE GIRLS

March 19-We continue to evaluate technology for the apartment.  A friend of mine set up a meeting  with some thought leaders in the field of automation and home technology,  who strongly discouraged us from buying an off the shelf HUB and programming ourselves. They strongly recommended using a company like Simply Home to program and update and manage the system.  Although you may save a little money in the end, a parent or guardian would be spending a great deal of time to monitor and to update and to program the off the shelf technology.  

THE GIRLS

March 21-The girls Zoom and each week, one of them presents their “All about me” presentation each week. This is really such a great tool which can be used for the Support Team.  I think, at least for our daughter, it gives her a sense of control and an opportunity to talk about all the things she loves in life.  She can ask her roommates to help her instead of someone else telling her when she needs help.  This gives the girls a sense of empowerment. 

AS A PARENT

REFLECTION: I think the parents in our group would agree, the ABOUT ME is a great project  to work on with your loved one!  So often, we are focused on where and when and how much support our loved one needs that we don’t take the time to celebrate all their gifts and what their positive impact is on the world around them.  

PARTNER FAMILIES

March 28-Parent Meeting- We discussed the kitchen schedule and when we think we might  need staff.  We agreed that we would pursue Simply Home for the girls. We also discussed the need to identify when we really need Support Staff as we will meet with the Staffing Agency in the weeks to come and we need to lock down a schedule. 

The girls have a friend that is currently living in the same complex and this friend has offered the girls an opportunity to tour their apartment. We will plan on touring her apartment in the next few weeks. 

GOALS FOR THE  WEEK AHEAD: 

1. Letter of Medical Necessity
2. One on one convo with SC. 
3. Connect with potential support team members
4. Use Cozi more

THE GIRLS

March 29-I spoke with our supports coordinators at MORC today about staffing agency and next steps.  As a group, we are interested in finding out if we can all be Employers of Record for shared hours.  Although optimistic that the staffing agency can be a solution, we are not leaving anything to chance and looking at all options to support the girls. Our supports coordinator advised us to have our daughter begin to work as independently as possible in the home and  take care of as much of her daily routine as  possible.  We need to really understand how much support she will need. Our supports coordinators wants to ensure we are requesting the appropriate amount of support and not cutting ourselves short. 

AS A PARENT

REFLECTION:  It seems like if you try to pay attention to launching your loved one a little every day, the process to launch your loved one is not so overwhelming.  No question, there is a lot of heavy lifting here and it will take an enormous leap of faith but we all left our parents home at one time…and whether you didn’t know how to do laundry or pay a bill or follow a bus route, you figured it out. Once you decide to take the first step, you’ve taken the hardest one!

THE GIRLS

March 30-Pretty good start to the week!  I am meeting today with a young lady who may be interested in working with our daughter for one on one hours.  And March 1, I sent a letter to family and friends asking for help finding a support person for the girls or for our daughter that yielded a lead. 

Will be working with our physician to help with Letter of Medical Necessity.  This may take a few weeks to get all the information needed to our doctor, but committing to getting this done. 

Need to start:

✔ Discuss with our physician

✔  Appt with Dr. 

✔ Develop list of technology or devices to support living independently

There are several templates and examples online. 

http://www.medben.com/wp-content/uploads/2019/06/mednec.pdf

AS A PARENT

REFLECTION: At dinner last night, it dawned on me that we do a lot for our kids and of, course, they help out a lot.  But I announced to my daughter that she would be making her dinner on Mondays and Thursdays, in addition to her daily breakfast and lunch.  I fought the urge to ask her what the workout plan would  be for the following day. (I did ask her brother to ask, but I’m going to try to thoughtfully back away from reminding and planning for her. We have the Cozi app so I will try to have a plan for the week each Sunday    !

April 1 This is a busy work week as I am prepping for a project that starts the day after Easter. Sometimes life, work or family, can take you off your game temporarily and that’s ok.  As long as you get back to it and keep moving forward.  

UPDATE ON GOALS FOR THE PAST WEEK: 

April 4- Easter Day!  What a gloriously beautiful day. It feels like everything is renewed on Easter and possibilities are endless.

OUR DAUGHTER

April 6-I had an intake with Psychologist with my loved one today. This is to amend the Person Center Plan.   There are some complications with regards to 3 individuals living together. For example, if a challenge for one causes restrictions for another, additional conversations need to take place to determine how to best not restrict others while protecting the one that requires restrictions.  This is not insurmountable……just requires planning and stick-to-itiveness! And although parents and roommates have signed off on restrictions, the county needs documentation and boxes checked to make sure that all individuals have access to the least restrictive life. 

AS A PARENT

April 8-I had lunch with girlfriends today, one of whom I haven’t seen in quite awhile.  I was catching her up on the adventure that lies ahead for our daughter, and the encouragement and excitement that my friends felt for my daughter and for our family was very much appreciated.  

AS A PARENT

REFLECTION: When speaking with my friends, it dawned on me that our loved one has reached the ceiling in our home. She has pretty much experienced as much growth as she can when four people in our family work together to get things done.  We definitely have a “many hands make little work” family where all  bills are paid by me, and my son does everyone’s laundry, and my husband does everyone’s grocery shopping, and I buy Target essentials and everyone’s clothes, and it’s not that my daughter doesn’t participate.  She for sure helps when we are out in the yard or cleaning, but day to day, she is not burdened with many responsibilities. It’s time….really time for her to experience life outside the home. It’s like a senior year of high school for another family.  It’s time. 

THE GIRLS

April 9-And it’s a good thing that the “IT’S TIME” revelation came to me today, because the apartment for the girls’ is officially available and the girls will fill out an application the following day.  AND THE MOVE OUT DAY IS JUNE 1. The plan is to head to the space the next day and scope out the apartment and do the application. 

As all this is happening, the girls are on a Zoom call with both their supports coordinators and they are doing the “What if’s” and  it cannot be more awesome for many reasons.  The supports coordinators  are part of this launch.  They have invested time and energy. I have heard people complain about supports coordinators through the years.  I am sure that being a supports coordinators is not an easy job managing expectations of families with an IDD loved one and wanting to do good work all while wading through government bureaucracy.  I am so impressed with the team spirit of our supports coordinators and the willingness to engage with the girls and the parents. 

THE GIRLS

April 10-We leave the lease signing party needing to finish the application at home.  We tell our daughter to try on her own and she does.  Everything seems to be good and docs have been uploaded and employment info has been entered and swoosh……SUBMIT.  Oops, somehow my daughter’s supervisor’s name is on the application and not hers.  What a bummer and my daughter was frustrated and disappointed and I can’t say I wouldn’t be too.  She wanted to see her name with her roommates and the suggestion of waiting until Monday to talk to the leasing office was not well received.  Remember how this is like senior year…amazing what turns into a thing.  But as my friend says “learning by doing”!

AS A PARENT

April 10- The meeting at the apartment and Lease Application

The REALITY of our daughters launch comes in waves and we were hit with the biggest wave to date as the girls  actually put pen to paper (or key strokes into a digital form) and all singularly worked on the application for their apartment. We had lunch and shared time together. Since Covid, we have been meeting virtually and it was so good to be physically with people. 

AS A PARENT

April 11-First thing this morning, I made a list.  And this is just a fraction of the list but hoping that the lists in the weeks to come will derail any anxiety!  For sure there is a lot to do, but we have planned and prepped and we have worked hard to get to this place.  I feel that the launch is like planning any event….there’s some big commitments to start and then there’s work along the way and then……. you’re 8 WEEKS out and it’s crunch time.  What will be a challenge (for me)  is to not sweat little things.  To be focused on the girls and their independence and their happiness and their safety is a MUST.  And with the execution of any event, there are audibles that need to be called  and problems that will need to be solved but when you realize that solutions are available and this is a milestone in the life of these 3 young women, you’ll put in all the work that is required to make this a success. 

Oh yes….and need to get to becoming a certified caregiver. Not panicked…..just focused. 

AS A PARENT/OUR DAUGHTER

April 12-Starting tomorrow’s list today. 

1. Call leasing office
2. Follow up with supports coordinators regarding EOR shared hours
3. Notify supports coordinators that move out date may be beginning of June and not July. *****Forgot to mention that there’s a possibility that the timeframe has been moved up a bit.  And not panicked….just keep making lists. 

SUPPORT

April 13-I found someone who is interested in working with the girls a few days a week.  This is a referral from the letter I sent to our friends and family.  We were informed at last night’s meeting with  supports coordinators that we can do EOR with shared hours.  This is a breakthrough. We are strongly encouraged by supports coordinators to use an agency and God willing, the agency will have the support staff to provide the right support at the right time for our roommates, but just like the girls are doing their “what if’s”….. I am doing my same “what if’s”.  What if the staff’s not right?  What if the hours the staff wants to work are not in line with the girl’s needs?  How open will staff be to adjustments in schedules?  Just making sure we assemble the “A Team” for the girls with regards to support. 

AS A PARENT

April 15-As parents, we will need to guarantee the rent for the girls.  This isn’t surprising for any of the parents as the girl’s income might not meet the threshold to approve an application.  

AS A PARENT/OUR DAUGHTER

April 17-We had a  family sit down with our daughter to review the work done to date behind the scenes.  We share schedules, and projected support hours and how we can use technology in the apartment.  There is some push back, some heightened emotions and resistance.  We did  not get  “thanks mom and dad! You have done a ton of work and I am so appreciative!” However, as is the case so many times with our daughter, a little time to process and acceptance starts to set in. This was not an easy conversation for any of us as I think, in my daughter’s mind, the apartment was going to be like a camp …..with a chance to come home frequently.  I have one of the other mom’s to thank for giving me the strength to envision this launch as independence and not camp.  I am sure my daughter was picking up a bit of what I envisioned when she asked if she was coming home on the weekends. It’s time to jump into the deep end and try with all we have to create success. 

OUR DAUGHTER

April 18-After a good night’s sleep, our daughter is open to reviewing the schedule and starting Monday, the following day, she will execute the schedule as if she is living in the apartment. A key to our plan is to have our daughter make her lunch for the following day the night before.  Additionally,  all of her breakfast ingredients  are measured out and placed in tupperware and in a cooler for the following day. 

PARTNER FAMILIES/THE GIRLS

April 18- Parents and girls meet again. We have an opportunity to tour another apartment at the apartment complex for 2 differently abled adults.  This is so inspiring to see these adults live and thrive.  

We met after the tour to discuss support staff.  We agree that the next step is to meet with a direct care  worker and determine if she is a good fit for the girls.  Since my daughter has a medical issue, I will meet with DCW first and the other parents will interview after or at another time. 

OUR DAUGHTER/SUPPORT

April 19-DAY 1 of Apartment schedule…..SUCCESS! Out early, breakfast made and dishes cleaned and at her desk working on schedule! This was great to see.   Our daughter has plans this evening so to get home, eat and prep food for the next day may be a little too much for the day but we can only learn by doing!  

I followed up with our  supports coordinators today.  I am trying to really keep us  “front of mind” with supports coordinators  and keep things moving. We need to interview potential DCW and want to stay in front of this.  

OUR DAUGHTER

April 20- DAY 2 of Apartment Schedule

Last night, our daughter did very well with prepping meals for today.  This is not surprising and I don’t know why I doubted it.  It’s generally the case that the newer something is, the more focused our daughter is.  It’s like the school year always started out great and three weeks in, at least one wheel came off the bus. 

THE GIRLS

I am  meeting tonight with moms to discuss apartment furniture and essentials.  More to follow……

AS A PARENT

REFLECTION: As much as one can prepare, there will be a lot of “learn by doing” for our daughter and for us.  There will be a time where control is relinquished and that will be hard for me.  So much of our families’ life has been either dictated by my daughters’ abilities and challenges or my need to create schedules and structure and routines to keep these challenges at bay.  

OUR DAUGHTER/THE GIRLS

April 23-Our daughter is still adhering to the new schedule.  Feels like a big accomplishment.  In my mind, the adjustment is going to be enormous but if we can start to simulate a schedule pretty close to one that she will follow in the apartment, it’s one less enormous change.  

We have been approved for the apartment with a move out day in early June.  We have connected with Simply Home who will install and program technology in the apartment.  This process will take a few weeks to program and install.  The hope would be that the SImply Home System would be installed on or around move out day.  We have been told it should only take one day to install.

THE GIRLS

April 24-The girls met for a community activity, yoga in the park.  So awesome.  The families gathered on Saturday night to share a meal, conversation and community.  It was such a beautiful night.  The woman,  who has been coaching the girls, and her wife were part of the evening as well.  It was a blessing to have our friend step up to coach the girls.  She’s been honest, dynamic, optimistic, encouraging and has worked with the women….not the parents but as a mentor.  What a gift to the girls…. to be looked at as adults and not as the  children of parents who are making life decisions for them.  A huge thanks you to our friend!!!!

SUPPORT

April 26- We are trying to arrange a meeting/interview with the potential support person for the girls.  It’s been a week and we are trying to ensure that we continue to move forward as we are now 6 weeks away and counting.  

SUPPORT

April 27-We really need to get a meeting on the books with this potential support person.  We have reached out to our supports coordinators and nothing is scheduled as of now. Truth be told, I am getting a little nervous.  

REFLECTION: If at this point you are saying to yourself “this parent seems so calm”, don’t be fooled. Know that you can do everything you can to prepare your child for a move away to college, or life with a partner, or  life in another part of the world, but you will always be a parent worrying about them.  Flat out, no questions asked…..most parents worry about their kids until the day they die.  Some parents are better hiding that they worry, but we all worry….that’s parenting 101.  

My brother said to me the other day that we prepare our kids for life changes throughout their life. Doing your best to raise your child  to be a good  person, with solid values, a sense of discipline and an understanding of responsibilities,  and the desire to be the best version of themselves that prepares them for life.  

SUPPORT

April 27, 2021-We have a meeting scheduled with the young lady who is interested in working with the girls.  May 1. 

TECHNOLOGY

April 28, 2021- We are meeting to discuss the technology for the apartment and how we would like the sensors and motion detectors to speak to each other and how we would like to receive alerts. D and I spend over an hour outlining how we expect the technology to work and be programmed.  

TECHNOLOGY

April 29, 2021 We have a meeting today with Simply Home and we share our notes from our meeting the day prior. The representative from Simply Home, with whom I have been impressed from the start, does a masterful job using our input to develop a plan that will work for the girls. Essentially, when the sensor detects a certain event  taking place, it will notify the girls or the parents that the event is occurring. WHen it notifies the girls, it allows them to self correct.  When the parents are notified, it will be a more urgent matter that requires us to speak to the girls to make sure all is good. 

SUPPORT

April 30, 2021-I have a meeting with our supports coordinator to discuss the needs of our daughter within her new environment. This is  a pre-planning meeting to adjust support when our daughter moves out.  

I had an opportunity today to buy an ottoman and couch for the girls today.  A few friends have asked about buying a little something for our daughter for her apartment so I sent them a few items that would help make their apartment warm and comfortable. 

SUPPORT

May 1, 2021- Zoom call today with the potential staffing person. Sadly, the woman was a “No Show”.  We are hoping this was just a communication snafu and that the meeting will be rescheduled.  It was a bit disappointing to say the least.  

As parents, we took a few minutes to have an impromptu meeting about furniture, loose ends, and utilities. 

THE GIRLS

May 2, 2021- My daughter and I were out and about and she saw a few pieces of artwork she liked for the apartment.  We purchased the art and our daughter asked the roommates to weigh in and if they like them, we will keep it and if anyone doesn’t like it, we will return it.  No worries. 

TECHNOLOGY

May 3, 2021-We have homework for Simply Home.  We need to provide SH with a script for verbal prompts that the girls will hear in the apartments.  We need to get all the contact info for each of us and the girls and a few “in case of emergency” numbers.  

TECHNOLOGY

May 4, 2021-I had a meeting today with our Supports’ Coordinator and a Psychologist from the county and a Clinical Services Manager.  Apparently, the requests I have made to have technology installed in the apartment and have these items be funded  Medicaid requires a committee review.  

My impression was that the group of people on this call would help frame the conversation so that when we are in front of the review committee, they can explain why the requests are being made and how they will allow my daughter to live the fullest, least restrictive, least intrusive life.  Such was not the case!

Medicaid will only allow for Medicaid dollars to be used for approved Medicaid expenditures.  Since technology is not part of the approved items Medicaid will fund, the committee cannot be asked to approve anything that isn’t on the list of approved items.  I am not quite sure why we had to meet because they could’ve explained to me over the phone that I have hit a brick wall and won’t be charging through it anytime soon.  

I thought that saving money would help nudge my case along.  On this particular call I was told that the state is not interested in saving money and that the state is about using people.  I commented that there really aren’t enough people (DCW) to meet the needs of all the individuals and the wages at which support staff is paid does not attract many people to this profession.  I mentioned that it’s great to have an ideology that people are better than using technology , but there is a reality about trying to find the right staff for $12.48 an hour.  Apparently, many in the DCW world feel that technology is surveillance and monitoring, neither of which is a philosophy embraced by  staffing agencies or the state.  However, if we are talking about least restrictive, how is a person working in your personal  living space less intrusive than a sensor placed on say a front door to alert an off site support person  that the entry to the home has been compromised?  Sensors in the home can be set up to promote person centered learning as alerts can be sent to the clients.  

In a nutshell, the state is interested in having clients use staff, of which there is a nationwide shortage, to be in a home in a client’s personal space as opposed to using some technology used efficiently and economically  in addition to appropriate DCW support.  It truly defies logic.  

And let’s not forget that the county is not providing housing solutions to the masses because there are no caregivers. 

SUPPORT

May 4, 2021-I had an opportunity today to meet someone who is interested in supporting the women.  This was a great meeting after a morning filled with disappointment.  This individual is upbeat, energetic and very compassionate.  I explained that we were considering a staffing agency and would be making a decision within a week on our direction.  

REFLECTION: Although the morning meeting was emotional and disappointing, the afternoon meeting was the complete opposite.  It feels now as if we have options when it comes to finding and using support for the women.  FInding and meeting a person with whom I met at the end of the day gave me hope that there are people who want to see 3 differently abled women succeed because they have good hearts and compassion. 

THE APARTMENT

May 6, 2021- The apartment is vacant and we were able to sneak a peek. The refrigerator is not going to work.  We need a side by side refrigerator based on medical necessity.  There is no microwave and very little counter space.  Good to know since we never had an apartment tour.  

Since we require a few modifications to the apartment based on medical necessity, we will need a doctor’s note and a form from the complex is required to identify what modifications are requested and the reason for the request. This was a simple task since I was prepared for such a request and the letter was readily available.  

SUPPORT

May 7, 2021-Connected with our Supports Cooridictor today who indicated that the NoShow interview had an emergency with a client, which is why she was unable to attend the interview.  Apparently, she had reached out but the message was never received.  We have a meeting rescheduled for Sat. May. 10. 

SUPPORT

May 10, 2021- We interviewed the candidate from the staffing agency who was unable to attend last week’s interview.  I spent 15 minutes on the phone with her individually to discuss my daughter’s medical condition and she was familiar with the syndrome. THe other moms joined and we asked several questions over the course of about 45 minutes.  The candidate was pleasant and seemed to be committed and passionate about her profession. 

After evaluating the needs of our daughters, and some direct hires that had surfaced, we collectively decided to staff the apartment without an agency and on our own.  This is not a decision that we took lightly or think is going to be easy.  The onus falls on us should someone have a conflict or an emergency or not be a good fit. After weighing the pro’s and con’s, we are committed to staffing this ourselves.  We can always change course, but this feels like the right decision right now. 

SUPPORT

May 12, 2020-Another individual was recommended to us as a possible support person.  We arranged for a meeting and today’s the day.  This young lady was awesome.  She was energetic and happy and proved that we can staff the apartment on our own. 

SUPPORT

May 14, 2021-Parent meeting to discuss staffing.  I invited the woman with whom I had been meeting to our zoom call in order for the other moms to meet her.  That went very well.  The young woman with whom my daughter has been working is also interested in working with the girls.  She, too, was brought onto our zoom call so that the moms could meet her. 

The meetings with the 2 candidates went very well and we turned our attention to the schedule and hours.  We decided that each support person would focus on one of the  shared goals and that we would ask for the supports coordinators to help with communication and calendars and scheduling.  

SUPPORT

May 16, 2021-The ladies zoomed this afternoon and one of the support team met with the girls to introduce herself and give the ladies a chance to ask questions.  This seems to be a good approach instead of having everyone walk in blind. We have shared the “All About Me’ presentations with the support staff and everything is moving along at a nice clip. 

SUPPORT

May 18, 2021-Meeting with the Supports Coordinator and a Supervisor from one of the agencies.  We have communicated to all that we are going to staff the apartment ourselves.  D has created a job description for the support staff and a calendar for the support team that we are sharing with the group.  We had a difficult start to the meeting because we were getting the impression that the method by which  shared hours between agencies would be billed had not been defined.  To sense that we thought was defined is now not defined was aggravating.  However, after some communication between the supports coordinators it was defined and all systems are a go.  Now we just need to get everyone trained in the next few weeks which is already in process. 

OUR DAUGHTER/SUPPORT

May 21, 2021-We are so very blessed to have a loving close family and dear friends who have supported us throughout our lives. Two such dear friends planned a surprise lunch for T.  It was so beautiful to see Taylor light up as my friends  acknowledged this enormous step and all the effort Taylor has put into making this happen.  

So excited for our time together but as we are in the car, a call comes in from the payroll company who will be the fiduciary partner for the ladies.  This woman is awesome and friendly and patient.  It is important to recognize when you meet someone like this in your efforts to launch someone because not everyone with whom you have contact is able to embrace these qualities.  The process to onboard takes about two weeks and can be started even if all the training is not complete.  

Because we are hiring our own staff, each employee will need to be hired by each girl.  We have three people on our team, and three ladies living together,  so each roommate will need to hire each staff member.  Albeit confusing to start, the medicaid dollars need be assigned to each girl and since support hours will be shared, the fiscal intermediary will divide up the medicaid pocket of money according to the entitlement guidelines to pay the support staff. 

May 23, 2021

REFLECTION: I attended mass today by myself. It was the first time in 17 months that our church did not require masks.  It was Pentecost Sunday, and much to do about the Holy Spirit.  As I sat in the quiet before mass began, it struck me that life will be very different in the weeks to come.  A sadness came over me as I felt the tears well up.  I will miss my daughter. So much of my life, half my life in fact, has been about our daughter and her needs and her challenges.  

We were unaware that our daughter has a rare genetic condition until she was 5 years old.  I remember speaking to my mom and expressing to her that I couldn’t do it….I was ill equipped to raise a special child. My mom said “God only gives us what we can handle.” And my response was “I think God misread my resume because I don’t have what it takes and I don’t think I can do this.”  My mom’s answer was “You do and you will.” 

It might not take a lot to be a mom or a dad  but it takes a lot to be a parent! You need to know when to push and when to let be,  when to support and  discipline, when to show compassion and when to be stern, and when to hold on for dear life and when to let go.  

As the journey to let go has taken almost two years, you would think  I would have had time to process this transition. I think that the acts of planning and doing and meeting and organizing have filled so much space in my life that the emotional part of this journey has fallen through the cracks. I pray for our daughter, for the other girls, for the parents and those to follow.  And I thank God for giving me the opportunity to “Do it’.  I hope for the most part, I have done it in a manner and with grace that would make my mom proud. . 

OUR DAUGHTER/PARTNER FAMILIES

The moms zoom to talk about the schedule and discuss last minute items for staff like training of staff (when and how and who), calendars and onboarding.  

SUPPORT

May 24, 2021-One of my goals with regards to this launch was to have staff up and running and prepared early.  Such is not the case as much is being done in the final weeks to fill out paperwork, provide training documentation and finish training.  Supports Coordinators are doing their best to keep us moving forward.  My thought was if we could simultaneously  travel down the road of direct hires and using a staffing agency, we would not lose ground.  Ultimately, everything will turn out but it is definitely a scramble in the 10th hour.  (We still have 2 weeks left so we are not at the 11th hour…but cutting it close!)

SUPPORT/ABOUT THE GIRLS

May 25, 201-This is NOT a good day. 

My daughter’s agency requires in-person training for First Aid and CPR.  The other agency requires a virtual class at this time due to Covid.  Pursuing live FA/CPR training  classes on behalf of our team members through my agency has hit a wall.  The first available class is in four weeks.  My agency will not reimburse an individual or a family should you be in crisis or in need to complete the training elsewhere.  There are classes between now and 4 weeks out, the classes are full.  Hard to not understand why the need to sign up for classes early was not highlighted by someone within my daughters’ agency.  

This afternoon, we had an impromptu meeting with the management at the apartment complex to discuss the modification request and the letters of medical necessity.  The meeting, which I thought would be a “How can we Help” meeting turned into “Here’s what we can do and here’s what we won’t do.”  Thankfully, D and my husband were with me as the meeting went sideways quickly.  I was definitely set off when a modification that is medically necessary for my daughter was turned down because the management felt that they have many other people to worry about who are paying a lot of money to live at the complex and this modification was too intrusive.  It was not up to Management  to find solutions, but it was up to us.  I asked “How do I come up with solutions if I don’t know what solutions you will allow?”  I thought we came up with a pretty good solution but management turned it down because it was an inconvenience to other tenants in the building and an inconvenience for future tenants as well.  

If I haven’t said it, having D in a partner in all of this is a blessing, and that doesn’t even feel like a big enough word. It was she that came up with solutions that Management felt they could consider but would need to review with upper management.  Still standing by. 

.

REFLECTION: Why does it always feel like you are peeling back layers when you embark on a journey?  Why is it always up to a parent to seek answers to questions that you don’t even know to ask? Is this how every parent feels or just those of the differently abled?  

 By nature, I trust that everyone has good intentions and has a good heart.  And although my meetings throughout the day today were disappointing, after some time away, you realize that maybe when you encounter a person, they are not having a great day.  

In life, we see the best in humanity and sadly,the worst.  But those who personify the best of humanity are the people you want close.  These are the people with whom you chose to do life.  These are the people who can help find answers to the questions you don’t know to ask.  

ABOUT THE GIRLS

May 27, 2021-I found out today that our daughter was given a grant for her apartment for a router and a keyless lock and a ring doorbell for the front door.  This was a nice way to end a week that didn’t start off on a high note.  

THE APARTMENT 

May 28, 2021-Furniture is getting delivered and it is all coming together.  In a week, we will begin the process of “The Move”. I pray for patience in the week to come so as to not get overwhelmed.  There will be lots to get done but if something doesn’t get done, we will figure it out.  

SUPPORT

May 29, 2021-There have been some complications due to multiple agencies providing support to the ladies.  As indicated throughout the journal, the supports coordinators from the separate have worked well together.  They have done their best to collaborate and work through the unique processes their agencies have in place.  However, I have decided to move our daughter’s case over to the same service provider that the roommates use.  This will streamline quite a few of the processes.  The other roommates  have the same supports coordinator and this coordinator has expressed a willingness to take on our daughter and her case.

THE APARTMENT

June 2, 2021-3 days to move out.  Lots of last minute things to get and errands to run.  It seems like I’ve been preparing for months but there are so many last minute items to get.  We are confirmed to have the technology installed during the first full week in the apartment.  So very excited to see this technology work!

Received information from the apartment complex that all of the modifications requests have been approved.  This is a weight off my shoulders.  Knowing that the basic need to keep my daughter safe with regards to food security has been addressed is very reassuring. 

THE APARTMENT

June 3, 2021- 2 days to move out and still more running around. R’s parents have allowed all the deliveries of beds and furniture to be sent to their apartment which is close to the girls place so that we are renting trucks on move in day.  

THE APARTMENT 

June 4, 2021-We actually get keys later today, one day early. We can move a couple of big things in so that we can hit the ground running on move-in day.  Lots of excitement.  The apartment looks great, clean and empty.  Imagining that in a few short weeks the apartment will be filled with life and laughter and three differently abled women will start a brand new chapter in their lives. 

THE APARTMENT

June 5, 2021 OFFICIAL MOVE IN DAY 

Furniture is being assembled, the kitchen is getting organized, pictures are being hung and this is all super exciting! 

THE APARTMENT

June 6, 2021-R spends her first night in the apartment and there are no  issues whatsoever.  How confident R is to spend the night by herself, no roommates, just herself.  Way to go! 

THE APARTMENT

June 7, 2021-R is up and at ‘em and ready to go to work and live her life in the new apartment. T heads over after work to eat and spend time with R.  Our staff starts tonight and D and I spend time training the staff on what’s needed to help the girls achieve success.  We train on food safety and security and the individual needs of the ladies.  We train on supporting the girls with clean-up and storing food.  The ladies did an awesome job stepping up to make dinner and clean up after dinner.  So very proud of T and R. 

THE APARTMENT

June 8, 2021-The installation of the technology takes place today. Sadly, the mattress that was due to arrive yesterday did not arrive.  I have to run and buy a mattress in a box!?!? Who ever heard of a mattress in a box….but I get a mattress and can now set up T’s room.  The technician is in the home and we have opted for a keyless entry system, a video ring doorbell and some additional security measures in the home like a panic button and an extra smoke detector.  The installation takes 9 hours to complete.  In the meantime the girls are coming in from work, caregivers are arriving, D is managing the installation, I am training the new staff person and by 7:00, D and I are physically and mentally exhausted. But excited to see how everything works. 

We worked on getting a grocery delivery system set up for the ladies.  This is a big experiment but I think this will work out nicely for the ladies. 

T is  back at the apartment for dinner and staff training.  We have a new staff person this evening and she needs to be trained.  D had made a training checklist to make sure the support team has our calendar app and  the ring doorbell app and has had  food training, payroll training and cleanup training.  Thank God for D’s organizational prowess.  

Part of the evening routine for T is to portion out her breakfast into miniature tupperware containers and to make her lunch.  All of these items will be placed in a cooler for T to access in the morning.  This is because we have opted to not have morning support and Taylor will not be able to access the refrigerator.  She is very capable of making her breakfast and using a stove without supervision. 

THE APARTMENT

June 9, 2021-Ran a few errands to get some items for the apartment. For someone who has been a professional shopper, I am literally getting shopping fatigue. But it’s little  stuff…batteries, and chip clips, and misc. 

Tonight will be T’s first night in the apartment and I plan to stay the night.  This is fun…it’s a mom and daughter sleepover.  I want to walk through the morning routine with T and see what holes need to be plugged.  I can already see a few things that require attention or at least need to be re-emphasized.  All things are doable…nothing needs a total redo….just tweeks. 

THE APARTMENT

June 10, 2021-Morning time and T is up and ready to run on the treadmill.  We don’t have to rush out as T’s schedule today is slightly altered and she is not working so we can ease into this morning routine. 

T runs for 45 minutes and showers.  Only one roommate, R,  is in the apartment right now and she manages the refrigerator and her breakfast with ease.  Great job!  T now has the kitchen and manages to make her breakfast and clean up without missing a beat.  

REFLECTION: As I observe the girls living into their solution, it is so gratifying to see them manage without parents.  Sometimes you have to wonder if you actually stand in the way of your child achieving greatness.  Certainly, without question, differently abled individuals require a different level of care and patience and love, not necessarily more….just different.  Hope and expectations and limits are managed by parents of differently abled individuals with realism and great deal of  grace.  How do you encourage or push individuals that do have known  limits but let them achieve greatness within those limits?  I guess no child comes with a set of instructions and as parents, we all do the very best we can to support our children to become the best version of themselves. 

THE APARTMENT

June 10, 2021 Evening and back at the apartment for a meal and clean up. We have another new team member starting today and it’s training and getting them up to speed and again, I am exhausted. I had loosely planned on staying with T tonight, but I didn’t even have time to pack a bag today.  I am amazed at how flexible T is and her ability to be fluid.  If it were me, and I was moving out, I would be nowhere near as patient as my daughter. 

THE APARTMENT

June 11, 2021-A few of the pieces of technology are not working as planned.  We need to get to someone on the tech team of Simply Home to identify problems, potential workarounds and realistic solutions. There seems to be a sensor missing from one of our pieces, we are missing login in emails for our parent group, and there are a few other glitches.  I am having  lunch with one of my nieces today but I am elsewhere as I am in touch with SImply Home to come up with solutions because I am struggling with the idea that the very sensors I need to provide me with a sense of comfort and security are not working.  

Sadly, as discussions ensue throughout the day, these issues are not going to be resolved today.  The girls have a movie night planned and all of the girls are planning to stay the night.  I cannot disappoint my daughter and tell her that technology is not working. So I don’t tell her it’s not working.

At 6:00 pm, I leave T and pray that she will be fine.  I think I need deprogramming!  Spending as much time and energy on T for the past 27 years will require me to back off incrementally.  I have a blood oath with D that by July 15, T will be managing her life and not her mom managing T.  

At 9:00, I am texting a bit with T to make sure all is well. And she is beyond happy.  She is actually glowing and I know this because she sent me a photo of the roommates watching their movie. I pray that she is safe but now is the time to trust my work and our parenting and T and God. 

OUR DAUGHTER

June 12, 2021-It’s 7:15 am and the plan is for T’s dad and brother to meet her at the apartment and go for a run.  And, at 7:10 am, T’s outside waiting for her dad and her brother to go for their traditional Saturday morning run. She’s back at the apartment after the run and she is showering and making breakfast  and getting ready for one of the staff to take them out into the community.  

REFLECTION:  At the beginning of this journey, I was impressed with the individuals we met in Evanston and all that they were able to accomplish when  given the opportunity. I am in awe of the three ladies  and I am honored to have been given the opportunity to help them arrive at this point.  Although much has been accomplished by the parents and the girls, the ultimate journey begins now as the girls work to achieve the independence of which they have dreamed.  

Much like a wedding, there is so much preparation and then the big day arrives.  There are centerpieces, and placecards, and speeches, and cake and and and.  But the wedding is just the kick-off.  The real fun and work and accomplishments are in the marriage itself.  

We have done the prep and executed the launch and now, it’s time for the ladies to live their best fullest life.  And not the best life we as parents have imagined, but a full life that our daughters envision for themselves.  I am exceptionally proud of these ladies and look forward to seeing them create and live their best fullest life.  

~The End of Charting the Course~

~Sailing Away~