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A learning disability is a disorder that interferes with a person's ability to master a skill (such as reading, writing, arithmetic concepts, etc.). Learning disabilities can show up in many ways such as, specific difficulties with spoken and written language, coordination, self-control, or attention.

Learning disabilities can be lifelong conditions that, in some cases, affect many parts of a person's life: school or work, daily routines, family and social life. Some people, may have overlapping learning disabilities. Other people may have a single, isolated learning problem that has little or no impact on other areas of their lives. Also, some individuals can manage, or even overcome, learning diabilities with focused therapy or specialized instruction, and/or medication.

It is important to know that not all learning problems are necessarily learning disabilities. Many children are simply slower in developing certain skills. Because children show natural differences in their rate of development, sometimes what seems to be a learning disability may simply be a delay in maturation. By law, learning disability is defined as a significant gap between a person's intelligence and the skills the person has achieved at each age.

(Source: NIMH -National Institute of Mental Health - for more information see their web page at www.nimh.nih.gov/publicat/learndis.htm)

Although know one really knows exactly why, there have been some specific learning disabilities associated with classic galactosemia. (note - there have been no learning disabilities positively associated with Duarte Galactosemia). Even some children who were diagnosed relatively quickly after birth and who are following the "restricted diet" have developed learning disabilities. Some of the learning disabilities associated with galactosemia include: speech and language difficulties, fine and/or gross motor difficulties, and difficulty with math or reading in school. Unfortunately, there are no firm numbers to quantify the percentage of galactosemics who experience learning disabilites.

It is important to know that not all children with galactosemia have learning disabilities. Because many galactosemic children do have problems, it is something very important to be aware of in observing a child's development.

One aspect of learning disabilities and galactosemia that is important for parents to keep in mind is that neurological impairments (e.g. fine motor difficulties) can sometimes present themselves "disguised" as a learning disability. For example, a child with trouble writing numerals or pointing may appear to have a learning disability with regard to arithmetic concepts, when the case may well be that the child understands the math concept just fine, but simply cannot control his/her writing sufficiently well enough to demonstrate mastery of the concept. It is important to note that a child may in fact have both problems.

How do I know if my child has a learning disability? (Ages 0 - 3)

Because every child develops differently, this can be a difficult question to answer. Your child's pediatrician should be your first source of information. He or she should be able to, with your input, notice any signs of problems in your child's development. Be sure to inform your doctor of the types of problems that have been associated with galactosemia. (Because galactosemia is very rare, your doctor may know very little, if anything, about galactosemia). If he/she knows what to "look for", it can be very helpful to him/her. Also, sometimes parents know best, so if you suspect a problem, and your doctor does not agree with you, get a second opinion. Research shows that the earlier a problem is treated, the better it is for the child. Remember to keep in mind that children develop at different rates - learning disability is defined as a significant gap between a person's intelligence and the skills the person has achieved at each age.

What kind of services should I get for my child if I suspect a developmental problem or learning disability?

Many local school systems offer free programs for young children (infants and toddlers) as well as for older children. You can call your local school system to ask for an evaluation for your child and/or to ask that your child be put into a program that would be appropriate for him. If you are unable to get services form you local school system, try a private therapist/teacher or institution. Some medical insurance companies may pay for all or part of these services. Check with your own policy.