Therapies

Therapists and Other Helpful Professionals

Developmental and physical delays are common in children with chromosome abnormalities.  There are many therapies available that can help you help your child.  We highly encourage you to seek out therapy at an early age.  While the developmental gaps may not seem large at first, by the time your child is ready for school, the gap may have widened and the opportunity for early intervention may have been lost.  It is important to remember that the therapist can perform an assessment and treat your child but they also make recommendations for home exercises that you can do with your child.  You are your child’s best therapist since you are the one that spends the most time with your child.  Therapy exercises work best when they are worked into the everyday activities and become part of your normal daily routine. 

Physical Therapy (PT)

A physical therapist is trained to assess and treat the gross motor functions of the body such as sitting, standing and walking.  The goal of physical therapy is to improve physical functioning. From infancy a child begins to develop their core muscles in preparation for learning these gross motor activities.  A physical therapist can teach you many ways to assist your child from an early age in order to shorten the developmental delay of these important motor functions.  

Occupational Therapy (OT)

Occupational therapy focuses on the activities of daily living such as feeding, dressing, and bathing. They specialize in adapting the environment to fit the person so that the child can live a good life to the best of their ability. They are very helpful with making recommendations for adaptive devices such as special scoop plates or big handled spoons for feeding, special seating or a bath lift for an older child. You should request occupational therapy services early on as there are many adaptive devices available for even infants that can assist your child.

Speech Therapy (ST) or Speech Language Pathologist (SLP)

A speech therapist is trained to assist with all aspects of communication and oral function from infancy through adulthood.  They assess and treat speech, language, cognitive communication as well as oral, feeding, and swallowing issues.  Many children with chromosome disorders have swallowing and feeding issues.  A speech therapist can even teach you exercises to help control excessive drooling.  If your child is not able to speak, they can assist you in developing a non-speech program for your child’s communication such as sign language or picture exchange or make recommendations and teach your child how to use an augmentative communication device.  

Some speech therapists have extra education in the area of feeding.  These are sometimes referred to as feeding therapists.  If your child is having difficulty with feeding, many children’s hospitals hold special feeding clinics on a regular basis that bring together pediatricians, ENT doctors, dieticians and feeding therapists to perform multidisciplinary assessments and make team recommendations.  You can ask your doctor for a referral to a feeding clinic near you.

Dietician

If your child has problems with feeding, it may be difficult for you to be sure that they are receiving adequate nutrition.  A dietician can evaluate your child’s feeding regimen and make dietary recommendations.  If your child needs a feeding tube, a dietician will make formula recommendations based on your child’s weight, activity level and medical conditions and also calculate the amount of fluid needed for proper hydration. 

Child Life Specialist

You might encounter these therapists in a hospital setting.  Sometimes also referred to as play therapists, these fun specialists assist children with dealing with stressful hospitalizations through play and distraction.  If you child is hospitalized or facing surgery, they can help to make your child feel more relaxed using specialized play techniques that can help normalize otherwise scary situations for your child.  Your child’s doctor might forget about this service, so be sure to ask!

Case Manager

It can be very overwhelming to manage all of the medical appointments, therapies, ordering of supplies, and other aspects of life-related to raising a child with chromosome differences.  This is especially true if you have no prior experience dealing with a medical problem or serious illness.  Case managers are nurses and social workers who specialize in assisting families with navigation in the medical world.  They can help find specialists, manage insurance obstacles, find community resources and even how to pay for them.  In the US you can request a nurse case manager from your insurance company to assist with medical appointments and supply issues. You can find a social worker case manager by contacting your local Department of Health and Human Services to assist with finding appropriate community services such as respite care and funding.  It is noteworthy that many community services have long waiting lists so you will want to be proactive and seek out these services sooner rather than later.