Many parents of children with congenital hyperinsulinism (HI) have concerns about child development– with good reason. Children born with the condition are at risk for developmental issues due to the potential for neurological damage resulting from prolonged hypoglycemia. Fortunately, with the right interventions many children with developmental lags make tremendous strides.
At the Congenital Hyperinsulinism Family Conference sponsored by Congenital Hyperinsulinism International (CHI) and the Children’s Hospital of Philadelphia (CHOP) held on March 17th and March 18, 2012, Rosemary Eikov, a developmental nurse practitioner at CHOP gave a comprehensive presentation on child development and HI. In this presentation (the PowerPoint will be posted on the CHI website soon) Eikov shared how to identify issues in order to help children develop to their fullest potential.
Eikov strongly recommends identifying problems as early as possible and the importance of trusting parental intuition. If a problem is suspected, it is best to have it checked out. In the presentation, Eikov discussed the process by which developmental issues are uncovered and remedied from birth through the school years.
Eikov shared with parents some important areas of child development. These areas are language, fine and gross motor skills, social and cognitive development. She also spoke about developmental milestones that are expected between birth and two years of age. When development is an issue, it is important to discuss concerns and seek out help from the appropriate professional. The list of professionals to turn to is long and includes primary care physicians, developmental pediatricians, neurologists, and speech, physical, and occupational therapists.
Working with these specialists, services for the child can be put into place including speech therapy, occupational and/or physical therapy. Often these services are also available at pre-schools when the child is old enough to attend.
When a child is old enough to attend primary school, these services can be continued, if necessary, in the school setting. Sometimes additional testing is necessary to determine if cognitive and social development is on track, if a child has specific learning disabilities, or if there continue to be lags in fine or gross motor, or speech.
Eikov listed indicators of learning differences for school-aged children including:
- Any kind of consistent learning or behavioral issues at school
- Frequent absences, aggression at school, boredom at school, or chronic tardiness
- Problems in the classroom including difficulty learning letters, trouble organizing, the struggle to remember or retrieve information, and being slow to finish or missing the big picture.
- Difficulty learning new words, understanding questions, following directions, finding the right words, spelling, telling time, learning addition, subtraction, or times tables, problems with writing.
Difficulties in any of the above areas could suggest learning differences in the following areas:
- A reading disorders
- Writing difficulties
- Math issues
- Non Verbal Learning Disorder
- Attention Deficit Hyperactivity Disorder
- The autism spectrum
If problems are suspected, school districts are there to help uncover the issues and provide services. Educational and psychological testing can be conducted. Parents can and should initiate a request if there is a concern. This process will find underlying issues and parents and schools can work together to put a plan in place to address the issues. These plans are call IEPs (Individualized Educational Plan) or a 504 plan. If there is agreement between family and school, these plans will be put into place. Often there is very good communication between families and schools but in some cases families have worked with advocates or attorneys on plans for children with learning differences.
Eikov shared with us techniques for the best kind of instruction for students with learning differences including:
- Breaking down a task into small steps
- Giving feedback repeatedly
- Providing pictorial or diagram presentations
- Allowing for independent practice and individually paced instruction
- Breaking instruction into simpler phases
- Instructing in a small group
- Modeling of skills by the teacher
- Providing individual instruction
In addition to teaching strategies, students with learning differences need to develop their own learning strategies so that they can learn together with their peers. They may also need accommodations and modifications in the classroom and at home when doing homework. The list may include:
- In class support or a smaller special education setting
- Homework accommodations and modified assignments
- Testing accommodations
- Use of technology : computers that read text, books on tape, computers, talking calculators, computer programs, programs that type when you speak , graphic organizers
- Class note takers, scribes, readers, proofreaders
In conclusion, Eikov shared some good resources that can be found online:
- International Dyslexia Association – www.interdys.org
- LD Online – www.ldonline.org
- Learning Disabilities Association of America – www.ldanatl.org
- National Center for Learning Disabilities – www.ncld.org
- Learning Ally(formerly Reading for the Blind and Dyslexia) – www.learningally.org
Eikov stressed throughout her talk the importance of early intervention and parental involvement in the educational process. She was very positive about the potential for children with learning differences to develop and achieve along with their peers. She pointed out that learning disabilities are actually quite common, from 5% to 15% of the general population, which is an indication that it is common for many students in any given community to receive services. The take away for HI parents is to be as vigilant about development as we are about blood sugar levels.
