Marlena -Dup15q Family Story

June 12, 2020
 How Time Flies….


I remember writing my first article about Marlena and the problems we were encountering. Marlena is now 21 and in a residential group home on a school campus in Oconomowoc, Wisc.  She is smiling and developing her independence even during these uncertain and trying Covid-19 times.


Let’s take a step back in time and start with her first few months of placement.  Once the honeymoon phase was over, Marlena struggled to adjust to living away from home.  As Marlena was in the school residential, her visits took place in a visitation room.  Sometimes the visits were long, sometimes 5 minutes.  She could get aggressive as she missed family life. The supervisor would always tell me that is normal and to just give it time.  Marlena had a counselor who would work with her on understanding her emotions. Eventually she adjusted and visits became more pleasant.  The school is very strict about protecting everyone’s privacy, so I was hardly ever allowed on her unit.  A stranger on the unit would also disrupt the other kid’s routines.  That was a big adjustment for me.  Every now and then they would let me up to check Marlena’s belongings and clothes and swap out her belongings. I was allowed to go off campus with her and even take her home.


During the first year, she became a resident on all 3 girl units.  Her first unit was too high functioning, the second unit, too low functioning and the third unit, she functioned her best.  Last July, I was told they would not have a bed for Marlena in their group home and that the school building residential ages out at age 21.  They would need to send her home April 2020.  Magically, in October, a room opened up in the campus group home and she moved into the group home in December 2019.  She can stay there and attend school until the day before her 22nd birthday.  I personally think I was just too demanding and being that dreaded parent always asking questions and wanting things done.  It was just a coincidence that my own job became tough and was demanding.  I was just too busy and too stressed to keep up.


Marlena attends school, and receives all the therapy and vocational training at the school.  They tried job training with the goats and chickens, but in true Marlena fashion, she was just too social with the animals and would get too distracted to complete the tasks.  Prior to Covid-19 lockdown, she was car detailing the school’s many vans.  She would wipe and vacuum the interiors. The school has a very large green house and she was also involved in much of the plant prep work like filling containers with dirt.


BehaviorMarlena’s behavior improved tremendously at the school.  Please look at the report and see just how great the residential program has been for Marlena.  The reports from the school are excellent and I get a weekly unit summary and a daily school note and well as behavior summaries. 


Since moving to the group home in December, she has had more fun.  She resides with 5 other girls, 3 of which are her age. The staffing ratio is 3 girls to 1 staff.  There is greater freedom in the group home.  They were going to the YMCA, going out shopping for their groceries and doing more trips and activities building on skills necessary for the next transition at age 22.  In the group home, she has access to the internet and her own television and electronic devices.  She is able to call and Skype very often.


When Covid-19 restrictions hit, she could only go for car rides and walks on campus.  The school is unique in that she never stopped learning.  While she wasn’t allowed into the actual school, a teacher came to the group home and provided education and some structure for ½ the day.  They were still able to go to the green house and see the animals too. Parents have not been allowed to visit; however, they have allowed me to drop off groceries and supplies and they will let her come to the door and say Hi.  Every now and then she struggles with not being able to come home, as of now, she can come home for 2 weeks but I must prove she is Covid free.  I am not sure Marlena would tolerate the nasal swap so I hesitate to bring her home. In a few weeks, they will let a parent visit on campus for 90 minutes. We are looking forward to riding her tandem bike together.


MArlena 21Marlena celebrated her 21st birthday in April.  Just look how happy she is at her party! The photo speaks volumes for how happy Marlena is in having her own life.  She smiles more and has friends.  What more could I want!    


Now comes the difficult part in deciding Marlena’s future. It has always been my dream to live by a lake and over the next couple of months; I need to decide where the best location for us truly is.  Can another state provide Marlena better services for this next transitional point in her life?  Illinois already is low ranking for disability services.  The state is in worse financial shape now that Covid-19 hit. I’m a state employee, we already know there is no pay increase this year and there is a hiring and buying freeze. Marlena has group home placement funding in Illinois already, and if I moved her to another state when she is officially discharged at age 22, she is emergency placement and will get funding in any state.  Such a tough decision.  Her school also became part of a larger company called MyPath and they do have other schools and other group homes and services.  There are possibilities!!!!


Life has been an adjustment living without Marlena but it has also been fun.  Having the freedom to come and go is something that I will never take for granted.  I take each day as a gift and try to make the most out of my free time while still working 2 jobs.  It’s been a blessing to not constantly worry about how I am going to care for her, how I am going to make it to work, get her medicines, get her to all appointments and then also have to worry about what her behavior.  There is so much less stress and anxiety.


My goal for Marlena has always been independence. I am very happy she was accepted at Genesse Lake School and that her IEP team agreed that a residential education was the most appropriate placement. There have been a few bumps and kinks along this journey, but remember, no residential is perfect.  One of the best things from living residential now before age 22 is that she has learned to live away. That huge adjustment will not happen on a trial visit to a new residential.  Her prior trials to a group home before residential placement were a disaster which disqualified for a spot in the group home. I don’t have to worry about that now. She will want another “home” away from home as she has thrived, she is happy, she has friends and life is good. 

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