Children with Smith-Magenis syndrome typically face delays in specific development areas. Early intervention is highly recommended and has proven successful for many individuals with SMS and their families.

What is Early Intervention?

Early intervention is a systematic program of therapy, exercises and activities designed to address developmental delays that may be experienced by children with Smith-Magenis syndrome or other disabilities. Research shows that early intervention treatment services can greatly improve a child with Smith-Magenis syndrome’s development. Services include therapy to help children talk, walk, and interact with others. For example, many SMS families have benefited from using sign language with their child before his or her speech developed.

The most common early intervention services for infants and toddlers with Smith-Magenis syndrome are speech and language therapy, occupational therapy, and physical therapy.

The Individuals with Disabilities Education Act (IDEA) states that children under the age of 3, who are at risk of having developmental delays, may be eligible for services.

“The Program for Infants and Toddlers with Disabilities (Part C of IDEA) is a federal grant program that assists states in operating a comprehensive statewide program of early intervention services for infants and toddlers with disabilities, ages birth through age 2 years and their families. In order for a state to participate in the program, it must assure that early intervention will be available to every child and its family”.

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When Should Early Intervention Begin?

Early intervention should begin any time shortly after birth. Early intervention typically continues until the age of three.

In 2004, IDEA was amended to allow states to provide early intervention programs that continue until the child is eligible to enter kindergarten. Some states provide this ongoing intervention.

While early intervention is extremely important, intervention at any age can be helpful.

What is the Benefit of Early Intervention for an Infant or Toddler with SMS?

A diagnosis of SMS opens the doors to a network of information and support from professionals and other families dealing with the syndrome. It is important to talk to your child’s doctor as soon as possible if you think your child has Smith-Magenis syndrome or other developmental delays to ensure you take full advantage of your local early intervention service programs.

Development is a continuous process that begins at conception and proceeds stage by stage in a sequential order. Most children are expected to meet each milestone at a specific age. Smith-Magenis syndrome presents specific challenges causing many children with SMS to experience delays in certain areas of development.

Early intervention can prevent children with SMS from reaching a plateau at some point in their development. The predominant goal of early intervention programs is to enhance development by building on a child’s strengths and strengthening skills that may be weaker.

Note: In children with SMS, it is most useful to monitor the sequence of milestones achieved, rather than the age at which the milestone is met.

Early Intervention for Individuals with SMS

There is a vast array of early intervention services that may be available to you and your family including assistive technology, audiology or hearing services, nutritional services, family counseling, psychological services and more. Individuals with SMS may benefit most from specific early intervention in the following disciplines:

Speech and Language Therapy

Occupational Therapy

Physical Therapy

Speech and Language Therapy

Onset of speech is often delayed in children with Smith-Magenis syndrome and articulation can be affected by muscle tone. Once speech as been acquired, children often experience difficulties with processing information.

Please visit our Speech and Language page for more information.

Occupational Therapy

Children with Smith-Magenis syndrome often have visual-spatial deficits and difficulty with fine muscle control. Occupational therapy focuses on fine motor skill development in children and can be a source of help with feeding issues and sensitivity to textures.

Please visit the American Occupational Therapy Association for more information.

Physical Therapy

Children with Smith-Magenis syndrome can exhibit issues with balance and weak muscle tone. Physical therapy addresses gross motor skill development.

Please visit the American Physical Therapy Association for more information.

How Do I Access Early intervention Services?

Each state has its own set of laws governing its early intervention services. The first step in accessing services is to obtain a referral. Your child’s physician can help you determine the need for therapy or you can have your child evaluated by a therapeutic service provider. Evaluation is provided free of charge, and you can request an evaluation through your local program directly.

Visit the Early Childhood Technical Assistance Center for a list of contacts by state.

Beyond IDEA…

For most school-aged children, therapy services will be provided by your school district if included in your child’s Individual Education Plan (IEP). Services may be provided as direct consultation services, depending on school policy. It is important to note that schools will provide therapies only if your child’s delays are seen as “affects their ability to learn”.

For some delays, private services are the only answer.

Living with SMS