GLOSSARY

WHAT DOES THAT MEAN?

USEFUL WORDS TO KNOW

Like ‘accessible’ this word has special meaning for people with challenges, who benefit from adaptive designs that make anything from a pencil to a computer easier to use.

Speaking up or taking action to support your child isn’t always as simple as it sounds. There is no one correct way to get what your child needs. When people talk about being a ‘good advocate’ they mean that the way you advocate is effective.

One of the types of Autism, referring to people who often have difficulties interacting and communicating but may have few of the other issues we usually find with ASD. Some call it ‘mild’ or ‘high functioning autism’. People with AS may have trouble understanding other people’s feelings and have repetitive behaviors.

This is actually a range of different conditions, which is why you also hear the name Autism Spectrum Disorders. There is a lot we don’t know, but the diagnosis is usually applied when three or more issues such as difficulty communicating, sleep, digestive and cognitive delays exist together The signs usually first appear in early childhood. People with this label may be very different from one another and about one in three are not verbal or have intellectual challenges.

Organizing patient care to meet the particular needs of an individual sounds like a simple idea, but it’s important to understand what it means in your state and your system of care.  Some kids with challenges may have many different providers, which makes coordination that much more important.

CP is not a disease but a group of disorders that lead to problems with movement. It is primarily associated with muscle activities. A baby unable to roll over or crawl by the expected age may be showing the first signs.  It is often linked with cognitive issues as well, but there is no such thing as a typical case of cerebral palsy.

A condition caused by an extra chromosome in a person’s genetic code that can cause cognitive disability. People with the condition can be very different from one another, and today many people with Down syndrome develop in many ways thanks to good supports.

When a baby or child is not learning and acquiring new abilities at the usual pace, the delay can be a sign that there may be a problem. That is one reason why regular checkups for children are so important. Not all babies make eye contact or start crawling at the same week of life and not all children start speaking at the same age.  But when a child is clearly behind in reaching milestones, it may be a sign that something is not right.

These are the behaviors that babies are typically expected to reach by a certain age, such as turning toward sounds (around 2 months) or sitting without support (6-9 months). Of course, not all children do new things at the exact same age,  but when a child is well behind in developing it can be a sign that something is not right.

Every baby cries when they have a stomach ache, but a child having problems that don’t get better needs to be helped.  There may be many different causes for digestive problems, and usually many ways to help. You should not ignore a child who is losing her appetite and having obvious issues with digestion: nutrition is important, and discomfort effects sleep and behavior and can make a child miserable.

Therapies and supports can make a real difference when they start at a very early age because babies and toddlers do a lot of growing in these first few years of life.  This can be as simple as glasses for a two-year-old or a full therapy program for a baby with cerebral palsy.  An Individual Family Service Plan (ISP) is needed to start these services.

Many kids are picky eaters, and sometimes parents worry when it is more of a nuisance than a real problem.  But when a child dislikes many foods or refuses to eat anything except the same two or three things, it is important to check in with a doctor.

A person may have a seizure once and never again, or have seizures easily controlled by medication, but epilepsy refers to a disorder where there are repeated seizures that are not easy to stop.  This can become a serious problem when it causes changes in the brain.  Even though there is a lot that experts still do not know about epilepsy, many people are successfully treated.

An expert can learn from carefully watching how a child walks, as an unusual gait can be a clue to other issues.

When a baby struggles to roll over, or a toddler cannot climb in the playground or pedal a bike, it is usually because of difficulty in coordinating how they move their arms and legs and torso. If ‘gross motor’ is about big movements, fine motor skills refer to how we use smaller muscles in fingers, toes, tongue etc.

Hearing loss is not always obvious and not all babies respond to sound in the same way. But it is important to see a doctor or hearing expert if you think there may be a problem with a child’s hearing. There are ways to help with this, and so it’s important to look into any issues with a child who seems to be having trouble hearing.

An IEP is for school age children, 5 years and older, who require specific kinds of supports and therapies that relate to their particular challenges. The key word is ‘individual’ as the goal is always to understand each child on her own terms.  A team helps with this—usually a pediatrician, therapists, social worker or teacher.  It is important to make your voice heard as well, as parents are the people who know the child best.

When a pre-school age child requires early intervention, the first step is an Individualized Family Service Plan. An IFSP details the child’s needs and the services they will be receiving.

Their goal is to offer the right supports for your child in the right setting.

If traditional medicine focuses mainly on managing diseases and correcting problems, Integrative Medicine is based on a broader idea of health that includes emotional, spiritual and social factors.  It is not a replacement for the medical care we are used to but broadens the goal of treatment to include wellness and happiness as well as the management of disease.

Conditions often related to lifestyle choices, such as diabetes and heart disease, are now responsible for a big share of the money we spend on health care. Lifestyle medicine centers on healthy habits that include a whole food diet, regular physical activity, good sleep habits and stress management.

A managed care system is one designed to keep people healthier while controlling costs.

How that is done can vary, but providers who meet quality standards and care for people at an agreed upon cost are often part of the system. So is the use of data, a key to effective, personalized care.

A group of diseases that cause muscle weakness that is progressive, meaning it can get worse over time. It is usually seen in boys, and the first signs generally show up in childhood. Many little kids are clumsy, but when a child seems to be falling a lot, walking oddly and having trouble running or jumping, it is important to have them checked out.

Another name for ‘personalized care’ that refers to medical care that carefully tailors treatments to the individual, for example based on their individual genetic makeup and health history.

Rett syndrome is usually first seen in infancy and almost always effects girls. It is a genetic disorder but caused by a mutation, which means it is not passed on from the parents. It can lead to a wide range of issues with physical development and mobility and also with cognitive functions.

A defect in the spine and spinal column that can take many different forms. Some babies are born with a gap in the vertebrae (the bones in the spine) that is so small they may never know about it as adults. In other forms there is an visible opening in the back, and this can be far more serious.  The problem is almost always spotted at birth or before.

Unusual brain activity can cause the whole body to shake, with arms and legs jerking uncontrollably. There are over 40 different kinds of seizures: some cause people to become unresponsive, others just a little confused or sleepy right afterwards. Not all are dangerous but a child who has a seizure for the first time should definitely be seen by a doctor.

If you think your child may not be seeing clearly it is important to have it checked right away. First, because not being able to see well affects everyday life and even safety. And second, even if sometimes all that is needed is glasses, you want to rule out any other problem.

               

@2022 START HERE