Receiving a diagnosis that your child has a disability can feel overwhelming. Ann Arbor Family talked to local experts about the most common disabilities seen in children, what they mean and how parents and loved ones can understand and accomodate special needs.
Down syndrome is a chromosomal condition in which people have an increased risk for congenital heart defects, respiratory and hearing problems, thyroid conditions and more. According to Elaine Luther, president of the Down Syndrome Support Team in Washtenaw County, a parent volunteer run organization, “The most important thing for new parents to know is that a child with Down syndrome is first and foremost just a child. They have strengths and weaknesses, triumphs and challenges just like any other child. They have a full range of emotions and are fully able to interact with their communities.”
Physical traits of those with Down syndrome include small stature, an upward slant to the eyes, and low muscle tone. People with Down syndrome usually experience cognitive delays.
Because children with Down syndrome often face delays in certain areas of development, early intervention is highly recommended. That includes physical therapy, occupational therapy, and speech and language therapy as well as exercises and activities designed to address developmental delays. Anyone expecting a baby who is diagnosed prenatally with Down syndrome, or anyone with a child with Down syndrome is invited to contact the Down Syndrome Support Team at www.downsyndromesupportteam.com.
Learn more about Down syndrome from the National Down Syndrome Society at www.ndss.org.
Autism Spectrum Disorder
Autism is defined by behavior analysts in terms of developmentally important behavioral deficits and excesses. There are deficits in both understanding and speaking language, social skills like eye contact, and paying attention to the surrounding environment.
“Children with autism do not play appropriately with their toys,” said Ben Wessels of Comprehensive Early Autism Services. “Parents often tell me their children communicate their needs by standing next to a desired item, crying or tantruming, or pulling the parent to what they want.” He says that children with autism engage in repetitive behavior like hand flapping, excessive tantruming and may be noncompliant.
Jenny Galamaga, Board Certified Behavior Analyst and the lead clinician at Comprehensive Early Autism Services, says that with appropriate intervention, parents can expect their child to learn new skills and show measurable improvement. She recommends that parents who suspect that their child may have autism should get a complete diagnostic evaluation as soon as possible. Galamaga and Wessels advise parents to educate themselves on the treatment options available. “When at all possible, treatment should begin early and be provided intensively,” said Wessels.
Comprehensive Early Autism Services
P.O. Box 7386, Ann Arbor
Intellectual disability is now the preferred name for mental retardation. It involves how the brain works and means that intellectual functioning, the ability to learn, reason, solve problems and make decisions, is limited. It also means that a person has difficulty learning skills necessary for everyday life, including taking care of oneself and interacting with others.
Signs of intellectual disability can appear as early as infancy with delays in activities such as rolling over, sitting, crawling or walking, trouble with talking, behavior problems, and difficulty mastering things like feeding themselves, dressing themselves and potty training. Alicia Kruk, supervisor of Early On and Family Services at the Washtenaw Intermediate School District, says that the term used in school systems for mental retardation is cognitive delay or deficit.
“If your child isn’t reaching those milestones, make a referral,” said Kruk. “Don’t worry, but don’t wait. Every child is entitled to an evaluation if there is a concern.” Kruk suggests a website to identify developmental milestones:www.michiganallianceforfamilies.org/eo2/infants-panel.html.
Parents can also do an assessment at www.washtenawsuccessby6.org.
1819 S. Wagner Rd., Ann Arbor
“Most children make mistakes when they are first learning to say new words,” said Pam McClure, Hanen Speech-Language Pathologist at the Washtenaw Intermediate School District. “However, when the mistakes (sound substitutions, omissions, deletions) or the pattern of sound errors (i.e. reducing sounds in blends-poon=spoon) continue beyond an expected period of time, that becomes an articulation or phonological disorder. A good resource is www.talkingchild.com/speechchart.html. McClure says that a child’s speech is considered to be disfluent when he or she repeats the beginning sounds or prolongs sounds in a word. A good resource is the Stuttering Foundation at www.stutteringhelp.org.
Some of the indicators that a child has a speech disorder include a toddler that is only saying a few words by 18 months, not putting two words together to form sentences by age two and difficulty imitating sounds and words by age two. Other warning signs include a parent’s inability to understand at least 50 percent of what their child says at age two, and if a child stutters on more than 10 percent of their speech.
Children with speech disorders may express frustration over not being able to communicate effectively, and it may impact their ability to interact with peers, as well as their literacy, spelling and writing skills. “If parents have any concerns about their child’s speech and language development, they should not wait,” warns McClure. “The research tells us that early intervention leads to better outcomes.” Parents can call 1-800-EARLYON or contact their local school district to access a free speech-language evaluation and services.
1819 S. Wagner Rd., Ann Arbor
Dyslexia means difficulty in learning the sounds of language and mapping those sounds to the letters of the language. It results in difficulty learning to decode and comprehend text. Joanne Pierson is the project manager of dyslexia help- www.dyslexiahelp.umich.edu- at the University of Michigan.
She says that like any disorder, dyslexia can range from mild to severe. “It’s worth investing in these children early,” said Pierson. “We need to keep their self-esteem strong. Intensive intervention works.” Pierson says that many dyslexic children are of average and above average intelligence. “They have strengths in areas that are non-linguistic and many don’t become readers until they’re in high school. Intervention needs to be ongoing depending on the level of severity.”
She says that initially parents should get a good assessment done on their child to design a good therapy program. She advises working with schools to see if the child qualifies for special education services due to a learning disability. “Continue to foster these kids’ strengths and interests,” said Pierson. “When motivated to read content, kids read, and the more you read, the better you become.”
The University of Michigan
500 S. State St., Ann Arbor
Attention Deficit Hyperactivity Disorder
ADD and ADHD, attention deficit disorder and attention deficit hyperactivity disorder, often present as behavior issues. According to Alicia Kruk, parents are often concerned because a child’s behavior doesn’t seem age appropriate.
“Early signs of ADD and ADHD include young children who can’t sit still and also talk all the time as if they are driven by a motor. Children with ADD or ADHD may be unable to focus, and may have more difficulty than other children finishing homework and chores as well as sharing and taking turns. A child may be accident prone because he or she may act without thinking, and may be more emotional than other children because he or she is more easily frustrated.
“If parents suspect a social or emotional delay or a coping delay, we look at developing a plan in the home,” said Kruk.
1819 S. Wagner Rd., Ann Arbor
Most impairments are first discovered at the doctor’s office. “If the child’s hearing or vision deficits are impacting their development and education, then we get involved,” said Alicia Kruk, supervisor of Early On and Family Services at the Washtenaw Intermediate School District. Vision impairment often changes how a child understands the world and can affect his or her cognitive, emotional, neurological and physical development.
Nearly two-thirds of children with vision impairment have additional developmental disabilities such as mental retardation and hearing loss. Hearing loss affects a child’s ability to hear speech which delays language development so it is important to begin intervention services as soon as possible.
Parents can encourage their child’s pediatrician to do screenings that test their child’s hearing and vision. Technical assistance and resources for young children with visual impairment or hearing loss can be found at Low Incidence Outreach, part of the Michigan Department of Education, at mde-lio.cenmi.org. Sound Support is a local resource through the University of Michigan Health System, www.med.umich.edu/childhearinginfo/index.htm for more information.
1819 S. Wagner Rd., Ann Arbor