In general, “dwarf” simply refers to something that is much smaller than average. Technically, people who are 4’10” and under (and shorter than the norm for their ethnic background and family history), once they’ve attained their adult height, are considered short-statured, or a “dwarf” person. If the short-stature is caused by a genetic condition where it is the major characteristic, then it is probably a form of dwarfism. There are over 200 different forms of dwarfism. For this reason it is very important that you find out as much as possible about your child’s specific type of dwarfism. This is what you will learn as a member of ABLE TOO. In general, there are two classes of dwarfism – those who are in proportion compared to average stature people and those who are not (i.e., who have “disproportionate short stature”). Proportionate dwarfism is generally related to hormone production. This accounts for their small yet proportionate stature. Other medical conditions or simply having short parents may also cause proportionate short-stature. Persons with “disproportionate dwarfism” come in all shapes and sizes, short arms and legs with an average torso, shorter torso with longer arms and legs, etc. Most of these types of dwarfism are in the family of skeletal dysplasias. In the past, people with proportionate dwarfism were referred to as “midgets”, and people with disproportionate dwarfism were referred to as “dwarfs”. Midget is generally considered to be an old-fashioned slang term and is not considered correct or preferable by most in the dwarfism community.
A baby born with dwarfism occurs in 1 in 10,000 births. A baby born with achondroplasia occurs 1 in every 25,000 births, making achondroplasia the most common form of dwarfism. It is important for physicians to distinguish between achondroplasia and other forms of dwarfism. Every form of dwarfism has some medical complications associated with it. These range from mild to significant and vary in frequency, even within a specific type of dwarfism. Only a few rare types have an effect on intelligence. Because dwarfism in general is fairly rare, parents have to educate themselves and find appropriate medical care when needed. You will need to become your child’s best advocate.
Most people, whether they have a skeletal dysplasia or are proportionately short, prefer the terms “short-stature,” or “little person,” or “dwarf”. Although it may be a little hard for you to use the term “dwarf” at first, it is an acceptable term to most of the short statured community. Some people prefer to be acknowledged as a “person with dwarfism.” The difference is using “dwarf” as descriptive (as in “person with dwarfism”) vs. a defining and declarative statement (such as “He is a dwarf.”). It is also good to think about the use of the word “normal” – as in “normal height”. “Average” is the word most commonly used and preferred. For example; I am average-height. My daughter has achondroplasia. My son is average-height. Sometimes the words we don’t say are as powerful as the words we do say.
CONCERNS ABOUT YOUR CHILD’S FUTURE
Perhaps you may be concerned with what your child will be like as an adult. Little people do virtually everything average-statured people do. They grow up and live independently of their parents. They get married, have children, go to college, work in any number of careers. They drive cars, fly airplanes, ride horses, participate in sports. T hey can also be students, lawyers, teachers, business persons, accountants, ministers, artists, musicians, mothers, fathers, engineers, journalists, authors, nurses, doctors, and secretaries.
As children begin to understand they are little (around ages 4-5), and will always be little, a friend with dwarfism or role model can help tremendously as they integrate the information into their personality. Knowing and seeing others will help your child handle the dwarfism, and alleviate a feeling of aloneness. When you, as a parent, can look your child in the eye and say “I know you are going to have a great future. I know you are a wonderful person. Yes, things may be hard sometimes, but I know in my heart that you have a great life ahead of you”, then you will know that everything will be OK and that together you and your child will weather the rough patches and be just fine. So always feel free to check any conference on people with dwarfism. Knowing others that ae successful will help you in knowing how the future is bright for them.
CONCERNS ABOUT SCHOOL
A common question parents ask is whether or not their child needs to attend a “special” school. The answer is emphatically “no.” As to public vs. private, you should make that decision as you would for any other child. Each type of school has its merits. Luckily, if you are new parents, you will have quite a while before you face that decision. Whichever school you choose for your child, be prepared to educate the staff and administration about your child before school starts. This education should be done in daycare and preschools as well. Most schools are very cooperative in adapting the environment so that your child can maintain his or her independence and not be unduly physically stressed. It is a good idea to have Individualized Educational Plan (IEP) or “504 Plan” on file with your school. An IEP or 504 can help guarantee your child’s educational success and comfort and safety in the classroom. The Resource Director (or Special Education Professional – the terms vary from state to state) for your school or district will be able to tell you more. A few well-placed stools are generally all that is necessary in the early years. The extent of the adaptation is up to you and the school. Be aware that there are certain legal avenues that you can use to require adaptations in the school if the administration is less than cooperative. These include Section 504 of the Rehabilitation Act and the Individuals with Disabilities Education Act. There is agood chance that your school has never worked with a little person before. Keep in mind that you must be partners in your child’s education and be willing to help the school get to know your child and his or her own special needs. You are your child’s best advocate. Most children with dwarfism fall under the “orthopedically concerned” area. That designation should be able to let the school apply for funding for any particular equipment, if necessary.
Other common questions concern how a short-statured child will handle their height with classmates. Before your child starts their first day of school, plan a brief informational session with the teacher and principal so they learn how to answer questions in line with your terminology and philosophy. “The Family Corner,” a newsletter published in the 1990’s for parents by LPA members, which is now on LPA’s Website (www.lpaonline.org), has some excellent examples of letters for school staff and other kids’ parents. There is also a sample letter in the back of this booklet. Some local charitable foundations, such as the Shriners, offer a puppet show called “The Kids on the Block” with has some puppets with dwarfism. They are often available to do presentations to classes or schools. There is a videotape, “What Children Want to Know About Little People,” available through LPA designed for presentations to grade-school children. Also an LPA member may be willing to come and speak to your child’s class or school. (Check with your child first.) It will be up to you and your child how far to take the education. What happens in any given classroom is the same phenomenon that happens in the world at large. Initially, your child may be singled out and noticed for being different. After a brief adjustment period, your child should be just fine. Like any difference, once the person is better known, the difference takes second place to personality and making friends.