One Family's Journey to Residential Care

In 1974, God blessed the McMillan family with a beautiful baby girl.  For the first twelve months of her life, Maggie met every developmental milestone.  Then it happened:  She started regressing for no apparent reason.  The doctors had no answers -- just a lot of possibilities.  Their guesses ranged from mental retardation, autism, aphasia, epilepsy, to name just a few.  To put it mildly she was a mystery to the medical profession.  Finally, in 1984 the family discovered that Maggie had Rett Syndrome.  Maggie's mom had read an article about the Syndrome in a newspaper and brought it to Maggie’s neurologist; who just happened to come back from a conference about the very same Syndrome.   At that time Maggie was one of only 250 world-wide documented cases with Rett Syndrome.

As Maggie approached the end of her high school years, her family realized they would have to make some pretty tough decisions.   What was available for a severe and profound adult?  According to the school system, she didn’t qualify for the local vocational center.  The McMillan’s wanted her to continue to develop to her fullest potential whatever that may be, but how? And where? 

 After doing much reading and research, they started to consider a residential home as an option for Maggie.  The more they read, the more it made sense.  Timing is very important.  According to their research, the best time to move a young lady into a residential home is before the school bus stops coming.  Then Mrs. McMillan heard about a children’s home called Carobell.  She thought certainly they could give her some information that would point her in the right direction.  The Program Director was so kind and understanding and invited the parents for a walk through the facilities.  The appearance was cheerful and homey.  The care providers were dedicated individuals, who you immediately felt were carrying out their passion in life rather than just doing a job.  The residents have their own Individualized Habilitation Plan (IHP).  The goals are integrated throughout the day at Carobell's non-public school (if they're under 21) or the Vocational program as well as at their house.  Just because an individual is 21 doesn’t mean their education stops.  No matter how old the resident, they are never too old to learn.  This seemed to be the answer to Maggie's family's prayers.

The truth hurt but it was quite obvious after weighing the pros and cons that a residential setting was the answer.  If Maggie were a typically developing young adult it would be her time to leave the nest, they rationalized.  Just because Maggie was an individual with special needs, it did not mean she couldn't have the same freedoms as her siblings and peers.   So at age nineteen Maggie moved into  her own home at Carobell.

The McMillan’s feel very blessed to have found a residential center that will go that extra mile to ensure their residents have the best care available.  Maggie was the first individual at Carobell that had Rett Syndrome.  When the Directors at Carobell found out that they would soon have a new resident diagnosed with Rhett Syndrome, the Syndrome was researched and the staff was well-trained.  The workers at Carobell are problem solvers.  If they don’t have the answer they are always searching for a better solution.  The McMillan’s have been very pleased with Maggie’s medical care.  If they have any concerns about her health it is always addressed.

It is not so lonely out there anymore for Mrs. McMillan.  She has a lot of support and love from a wonderful group of care-givers that is more like an extended family.  Since Maggie has been at Carobell her weight has increased from 70 to a healthy 115 pounds.  Her seizure activity is under control, and she no longer has behavior problems.  She is also enrolled in prevocational training.  Maggie is learning to stuff dog beds and make dog and kitty biscuits.

Carobell has truly been a Godsend to the entire McMillan family!

For more information about Rett Syndrome, visit the website of the International Rett Syndrome Foundation


About the Author:

The elated emotions Mrs. Kathleen McMillan felt as she gazed into her first-born baby girl’s eyes, were worth the 43 weeks of gestation and 22 hours of labor.  These joyous feelings prompted dreams of an optimistic and successful future. She foresaw dance classes, cheerleading, proms, Ivy League colleges, an up and coming career, and a beautiful wedding.  To her Maggie, was perfect in every way.  Little did Mrs. McMillan know at the time, that her life would lead her down a road very few people traveled.  At the age of ten Maggie was diagnosed with Rett Syndrome. She was only one out of 250 known cases in the United States.  Fast forward nineteen years; and then came Carobell!

Mrs. McMillan is an advocate for all children with disabilities.  She became a member of ARC, the Mayors Committee for Persons with Disabilities and volunteered for Special Olympics. Mrs. McMillan is a mother of three daughters, Maggie the oldest, and the wife of Retired USMC officer.

Though the journey of raising a special needs child may have been rocky, Mrs. McMillan does not regret a moment.  She has met so many incredible people along the way. To her, being a mother of a special child is a blessing.  It’s the highest honor she can claim!