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Defying the Odds: Succeeding academically while battling hydrocephalus


My son Drake has a neurological condition called hydrocephalus. He has had 17 brain surgeries to date. At the starting line of my his educational journey, I knew there would be some pit stops that would energize his success and others that would require pulling off the road and analyzing the way forward.

Hydrocephalus — the buildup of fluid in the cavities (ventricles) deep within the brain that causes pressure on the brain — affects about one or two of every 1,000 children born. It is caused by a wide variety of medical problems, and the circumstances of each child’s condition are unique. There is no standard profile of “the child with hydrocephalus,” just as there is no standard profile of “the typical child.”

With Drake’s neurological diagnosis, we wanted to be proactive in paving the way forward in his education. When he was three years old, we brought up at a well-visit that Drake was not talking very well. He communicated minimally, and we could interpret what he was trying to convey. Our pediatrician sent a referral for early intervention.

Early intervention services, for children from birth to age 3, are provided under the Individuals with Disabilities Education Act (IDEA). Through grants to each state from the federal government, children who qualify may receive services free of charge or at low cost. To be eligible, your child must have either a significant developmental delay or a specific health condition that will most likely lead to a delay.

Drake was evaluated by Lincoln Intermediate Unit from York County because that is where we resided. At the evaluation, they conducted a variety of testing to look at Drake’s overall development.  At the conclusion, they went over all the areas where Drake needed assistance. They also discussed the areas that he excelled in (which were minimal). We were determined to find the help Drake needed, and took the driver’s seat in his development despite his neurological condition. Our son, meanwhile, was just trying to survive Hydrocephalus.

Early intervention was very helpful because it helped lay a foundation of skills to help mold him into a young learner. They taught us ways to help our son identify what he wanted to say to enhance his vocabulary. Through physical therapy, Drake gained strength in his legs and core. He also was fortunate to have occupational therapy that helped him understand and learn how to button shirts and turn door knobs. Because of this important intervention, Drake was moving forward and took part in early intervention classes in a formal classroom setting.

As our son approached kindergarten, we were eager to see him integrate into a general education setting. Right out of the gate, the school approached us about having Drake tested; then they wanted to develop an Individual Education Plan. An IEP helps ensure that special education services are provided as planned, and that their appropriateness is evaluated regularly.

When Drake’s first marking period in Kindergarten ended, we were invited to a parent-teacher conference.  There, his teacher told us that she was unsure that Drake would make it out of kindergarten. He was not meeting the mark in comparison to his peers. At the end of this meeting, I reached out to our neurosurgeon at Johns Hopkins Hospital, Dr. Benjamin Carson, about this issue of concern.

“If Drake is not learning, that means the teachers are not teaching to allow Drake to learn,” Dr. Carson told us. This was one of the moments in my son’s educational journey that empowered me as a special needs mother to learn how to advocate for my son. I was determined to show educators that my son may have hydrocephalus, but hydrocephalus will never have my son. His condition does not define his ability; to the contrary, most children with hydrocephalus have average or above-average intelligence and are eager and willing to learn and succeed.

Dr. Carson referred us to Baltimore’s Kennedy Krieger Institute; more specifically, he referred us to its Neuropsychology department for a comprehensive evaluation for Drake. The Outpatient Neuropsychology Service works with individuals from infancy through young adulthood, offering comprehensive services through a Diagnostic Intake Clinic and specialty clinics focused on developmental psychological and neuropsychological assessment. All department services apply professional expertise to the understanding of development and functioning, with an emphasis on fostering understanding and providing recommendations to families, schools and other professionals to maximize each child’s potential. Formal testing may include measures of intellectual functioning; adaptive skills; attention/executive functions; language and language-related processes; academic/pre-academic achievement; nonverbal/visual processing; learning and memory; motor skills; personality; and emotional functioning. Drake’s neuropsychological evaluation helped enhance his IEP to guide his teacher and paraprofessionals on how he learns and what it will take to help him be successful in his education.

So, Drake went onto first grade, and then to second. Unfortunately, during that school year he needed a shunt revision. A shunt is a hollow tube surgically placed in the brain (or occasionally in the spine) to help drain cerebrospinal fluid and redirect it to another location in the body where it can be reabsorbed. Shunt procedures can address pressure on the brain caused by hydrocephalus and relieve its symptoms — including gait difficulty, mild dementia and lack of bladder control. With every shunt revision, something changes neurologically.

Despite the surgery, Drake completed second grade and then went on to third, fourth and fifth grades. We counted all those years as victories in his educational journey. When he approached middle school, we were concerned because we knew that the expectations for learning would increase.

At the start of sixth grade, Drake had to undergo another shunt revision. Hydrocephalus symptoms may improve within days of shunt surgery; they may also take weeks to months to get better. Other neurological or medical conditions can affect recovery. If symptoms are mostly due to normal pressure hydrocephalus as opposed to other conditions, the shunt is likely to help alleviate them. About 10 percent of patients show some improvement soon after a shunt is placed but show less of a long-term response. The reasons for this are not well understood.

Again, despite the surgery, despite the odds, Drake’s first marking period in middle school ended in success. He achieved honor roll. And he earned it again for his second marking period. During his third marking period, Drake was admitted to Johns Hopkins Hospital for an intercranial pressure monitor due to increased headaches. The monitoring of intracranial pressure is used in treating severe traumatic brain injury patients. It is an invasive procedure, and involves various transducer systems (most used is insertion of a catheter into the cranium).

Despite tremendous odds due to his neurological condition, Drake yet again achieved honor roll. And at the end of the final marking period, after all of his medical battles, our son made distinguished honor roll.

Hydrocephalus is a life-long condition that presents risks to both cognitive and physical development. But with therapies and interventions, some of those potential delays or limitations can be avoided. That kindergarten teacher expressed doubt in our son’s ability to ever make it to first grade, much less make distinguished honor roll in sixth grade.

My son Drake is proof that a child with hydrocephalus can defy the odds in their education.

 

Ashley Mantheiy has two sons with hydrocephalus, Drake and Benjamin. Combined, the boys have endured nearly 40 operations in their battle with the condition.

 

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