Early Intervention and Special Education

  Early Intervention

“Early Intervention” is the process of identifying infants and young children who are at risk for problems with development, and providing them with services that can improve or prevent those difficulties.

Children with WAGR syndrome are at risk for problems in development because they are usually born with vision impairment, may have significant illness early in life, and may have cognitive impairment.   For these reasons, they may not crawl, walk, or talk at the same age as their peers. Early Intervention services can help them achieve these milestones more quickly than they could without such help.

Early Intervention Services typically include developmental evaluation, physical and speech therapies, and may also include assistive technology, family training, and respite services.

In the United States, Early Intervention services are free, and mandated by law. Children with disabling conditions are often referred by their pediatrician for these services shortly after birth. Parents can also contact local Early Intervention services directly.

To locate these services in your state, look here:
“Finding Help for Young Children with Disabilities” at http://www.nichcy.org

The Hadley School for the Blind is an online resource which offers free courses on parenting and Early Interventions for infants and young children with vision impairment or multiple disabilities: http://www.hadley-school.org

Sign Language for Infants and Young Children with WAGR syndrome

Many parents have found that sign language can be an effective way to facilitate speech and language in children with WAGR syndrome. Parents can easily learn a few basic signs, teach these to their child, and add to their vocabulary as the child grows and learns.
Sign language instruction, resources, and online videos (FREE):
http://www.babies-and-sign-language.com

Early Intervention Services outside the US:

Many countries have Early Intervention services for infants and young children. To find out if these services are available in your country, you may have to be persistent. Here are some suggestions:

1)   Go to http://www.google.com and type in “early intervention (your country)”

2)   Contact a local school, and ask them to refer you to programs for young children with special needs.

3)   Look for local or national support groups, such as those for people with blindness, and talk with the members.

4)   Ask other parents whose children have disabilities.
Other resources outside the US:

International Society on Early Intervention:
http://depts.washington.edu/isei/

The Hadley School for the Blind: http://www.hadley-school.org

The International Center for Rehabilitation: http://www.cirnetwork.org/info/aboutus.cfm

Finally, if the place where you live does not provide any services for young children with disabilities, do not despair. Early Intervention is simply an attempt to minimize the impact of a child’s difficulties, and to maximize their abilities. You can learn many interventions yourself, and accomplish a great deal with your child.

There are many good books to help you and excellent websites with ideas you can tailor to your child’s needs. For example, the Hesperian Foundation offers a booklet called, “Helping Children Who Are Blind.” This booklet is designed for families that do not have access to early intervention services.
You can download the entire booklet (FREE) at: http://www.hesperian.org

The Resources page of the International WAGR Syndrome Association website also lists many books and websites which offer activities parents can do to promote motor and cognitive development, cope with challenging behavior, and maximize your child’s learning: http://www.wagr.org/resources.html


Special Education

School-age children with WAGR syndrome often have multiple special educational needs. In addition to vision impairment, they may also have developmental delay or cognitive impairment, sensory integration disorders, behavioral disorders, and/or medical issues which impact their education. For these reasons, modifications in the classroom, teaching methods, or instructional materials are usually necessary to allow the child to reach their potential.

“Special education” is instruction designed to meet the learning needs of school-age children with disabilities. Depending on the child’s needs, specialized teaching and services may be given entirely in a regular school classroom (alongside non-disabled peers), or in a separate, “self-contained” classroom within a typical school, or in a special school (such as a school for the blind) with the child as a day or residential student.

Special Education resources outside the US:

The Council for Exceptional Children: http://www.cec.sped.org

Autism Center: http://www.patientcenters.com/autism/news/outside_us.html

Getting appropriate special education services for your child can be a confusing and sometimes frustrating challenge, no matter where you live. Learning how your local system works, and taking advantage of all available assistance can make this task much easier. The Resource page of the International WAGR Syndrome Association contains a list of websites, books, and organizations to help you: http://www.wagr.org/resources.html

 Teaching the Young Child with Motor Delays: A Guide for Parents and Professionals , by Marci Swanson and Susan Harris. This book is a useful guide in choosing development tasks to work on with your delayed child. It contains a lot of detail on breaking down large developmental goals into small, attainable steps. There is a large section devoted to outlining "objectives", giving suggestions on how to attain them, and examples of rewards. Uses clear and detailed examples.

 When Your Child Has a Disability: The Complete Sourcebook of Daily and Medical Care , Revised Edition, by Mark Batshaw. A useful book to read and keep as a reference. Covers a wide range of medical and educational issues, as well as daily and long-term care requirements of specific disabilities. Discusses parent concerns like behavior, medication, and potential complications. Also addresses issues such as prematurity, early intervention, legal rights, attention-deficit/hyperactivity disorder, learning disabilities, genetic syndromes, and changes in health

Here are some links to information you might find helpful:

 Developmental Milestones

http://www.med.umich.edu/1libr/yourchild/devmile.htm

 Non-verbal Learning Disorders

http://www.med.umich.edu/1libr/yourchild/nld.htm

 Speech and Language Delays and Disorders http://www.med.umich.edu/1libr/yourchild/speech.htm

 Learning Disabilities

http://www.med.umich.edu/1libr/yourchild/ld.htm

 Dyslexia and Reading Problems

http://www.med.umich.edu/1libr/yourchild/dyslexia.htm

 Genetic Syndromes

 Lead Poisoning