Kaylee is living in Richmond with her mother, Trish, and maternal grandparents, Richard and Jody Morris. Trish decided to drop out of college at James Madison University after her first year of college. Brody dropped out of James Madison University to live at home in Midlothian to be closer to Kaylee as well following his freshman year. He takes classes at a local community college at the request of his wealthy parents and works part time at a family friend's law firm. He is paid well at his job and contributes around 75% of his pay checks every week to Trish and Kaylee. Brody's parents also contribute gifts for Kaylee and financial gifts to the Morris's and Kaylee each month.
Trish's depression following Kaylee's birth has only grown worse. She feels extreme guilt for causing Kaylee's disability and feels that the insecure attachment Kaylee has for her is her own fault. Studies show that mothers are more likely than fathers to experience depression following the birth of a child with a disability. Kaylee's maternal grandmother is her primary caretaker both physically and financially simply because Trish is very depressed and not financially secure enough to be on her own. Brody does contribute around $1500 a month to take care of Kaylee as well. Kaylee is well taken care of, even though her parents are very young and not completely financially stable. Because Kaylee is fairly spoiled by her grandparents, this tends to lead to a lack of discipline and therefore more behavior problems.
Kaylee's physical development moves slowly. Kaylee is still much smaller than her peers at age 5. She only weighs 30 pounds and is 30 inches tall. She has a very small head with noticeably small, yet wide, eyes. The results for the vision test showed that Kaylee needs special glasses to correct her Strabismus, also known as cross-eyedness, and minor near-sightedness. Insurance will cover most of the medical expenses for these glasses. Kaylee also has a very indistinct philtrum between her nose and upper lip. Most babies learn to walk between 9 and 12 months but Kaylee first sat up on her own at 12 months and learned to walk at the age of 2. Although Kaylee was developmentally delayed, Jody was very determined to keep faith in Kaylee and tries every day to make new strides with Kaylee's walking and physical development.
At the age of 5, Kaylee can walk and run like a typical 5 year old but her small stature and extremely slim frame is very weak and tires easily. She also has very poor coordination and is known for being "accident-prone." Although Kaylee loves to draw and paint, she has very poor fine motor skills and gets distracted quickly, once her hands tire. Jody feels extreme frustration when caring for Kaylee because of her own increasing age and lack of energy. Even though Kaylee is not as physically strong as the average five year old, Kaylee has extreme hyperactivity and can't ever seem to sit still or listen to instructions. She squirms and fidgets often at the dinner table and sometimes walks aimlessly around the house instead of following simple instructions like putting away her toys or putting on her pajamas. Most recently, usually following her frequent temper tantrums, she has been found banging her head against the couch. This self-destructive behavior is a red flag for Jody because of her own daughter's depression and causes lots of anxiety and fear for all members of Kaylee's family.
Kaylee's inattention and impulsivity continues to be a growing problem. She often interrupts Jody or Trish while they are giving instruction and when asked to answer a question, she makes quick, thoughtless guesses instead of taking the time to come up with a reasonable response. Because her impulsivity leads her to react to unpleasant circumstances more dramatically, she throws tantrums daily and without warning. These tantrums put more stress on her aging grandparents and depressed mother. Although Brody does not see his daughter as often due to his busy schedule working and taking classes, he has often noticed that she is hard to soothe and comfort when she cries. Social gatherings are also very difficult to attend with Kaylee because she is easily aggravated when she is withheld from running around aimlessly at her leisure. Jody suspects ADHD and asks her doctor to test Kaylee for the disorder at one of her routine check-ups. The doctor determines that Kaylee does in fact have all the qualifications to receive services for ADHD once she starts Kindergarten in the fall. Because of her tiny stature and low weight, the doctor does not want to prescribe any of the common stimulants that treat ADHD such as methylphenidate hydrochloride, dextroamphetamine sulfate, dextroamphetamine/amphetamine formulation, or methylphenidate. All four stimulants have side effects that can cause loss of weight or appetite and this could be extremely dangerous for Kaylee. Instead, the doctors opt for guanfacine. Inuniv is the brand name for guanfacine, which is an antihypertensive that decreases fidgeting and restlessness, and increases attention and a child's ability to tolerate frustration. The doctor recommends that Kaylee takes Tenex instead for her first year of elementary school because Inuniv is not recommended for children under the age of 6. Tenex acts the same way as Inuniv but is known as the "short-term" version of the medication. The medication does seem to help in the mornings but wears off later in the evening around dinner time. This takes some stress off Jody, Trish, Brody, and Richard but dealing with Kaylee's disorder still causes a lot of anxiety and financial stress on the Morris's.
Kaylee still has trouble with her language development and is seeing a Speech Language Pathologist for duel receptive and expressive language disorders. While most children are focusing on learning how to read, Kaylee is still struggling with pronouncing words correctly and understanding spoken speech. A receptive disorder means that a child has difficulties understanding what is said to them. An expressive disorder means that a child has difficulty using spoken language. They are both neurologically based and can be treated by seeing an SLP. The symptoms include not seeming to listen when spoken to, inability to understand complex sentences, language skills below the expected level for their age, and inability to follow verbal instructions. Her moderate conductive hearing loss and ADHD diagnosis both contribute greatly to her delayed language developments. She sees her SLP twice a week and makes slow but gradual progress there. She has not yet learned to read at all but is making bigger strides in comprehending verbal stories and pronouncing compound and complex sentences coherently and accurately.
Brody's parents begin to feel guilty for their lack of support and presence in Kaylee's life once Jody is diagnosed with early onset breast cancer and must shift her main focus back to her own health and surgical removal of the tumor. Trish has become more present in Kaylee's life after receiving treatment therapy (provided by her insurance) for mothers with children with disabilities. The financial situation for the Morris's is quickly jeopardized once Jody is diagnosed with early onset breast cancer because the expenses for Kaylee's treatments (SLP, Audiologist, ADHD treatments) are relentlessly piling up. Brody's parents offer to pay for respite care and behavioral therapy for Kaylee while the Morris's deal with Jody's health condition.
Decision Point:
Does the Morris family accept the Adam's offering for respite care and behavioral therapy?
Questions:
1. How much annually does respite care cost for children with disabilities in Virginia?
2. What side effects might Kaylee face while taking Tenex/Intuniv?
3. Are self-destructive habits or violent outbursts norm for children with Fetal Alcohol Syndrome?
4. How might Kaylee perform in an academic setting once she starts Kindergarten in the fall?
5. Will Kaylee's doctors eventually have to find a new medication to treat her ADHD and behavioral problems, as she gets older? If so, why?
