Lauren June D. - PA, Cardiomyopathy, Intellectual Disability & Autism (age 8)

Lauren was diagnosed with Autistic Disorder in October 2009.  This diagnosis is secondary to her metabolic disorder, Propionic Acidemia (PA); heart condition, Cardiomyopathy; and intellectual disability or developmental function level of age 2.  With the autism diagnosis came some funding for intervention or therapy.  We opted to use all of her autism funding for feeding intervention using the ABA model.  Lauren has a very busy schedule with her feeding intervention, Speech therapy, Occupational therapy, special needs soccer, medical appointments and regular blood work.  In addition, she attends Grade 3 full-time at MacKenzie Elementary in an inclusion class.  She has a one-to-one support worker, who has been with her since Grade 1.  Lauren’s teacher and classmates are very supportive of her special needs.  They make every effort to include her in regular class activities and give her space when she needs it.

At home, Lauren prefers to relax by watching t.v. or playing on the computer.  We try not to inundate her at home with more “work” because she deserves the down-time.  Actually, the state of our home is rarely quiet since Lauren has 3 siblings:  older sister, Jenna (age 11 also has PA); younger brother, Christopher (age 3) and baby sister, Genelle (newborn).  I truly believe Lauren’s social interaction improved dramatically since having younger siblings.

Lauren continues to be entirely tube-fed.  She gets her 3 bolus feeds in the day and continuous feeds at night via machine pump.  She is toilet-trained during the day, but still requires diaper at night.  We know there are still many challenges we will face in the future, but we also know Lauren has the tenacity to overcome them.  As a couple, my husband and I ensure we also make time for “us”, which really helps strengthen our relationship and ultimately, our ability to parent and handle the challenges that come our way.