Following a Rett Syndrome diagnosis, you may find yourself navigating a maze of different therapies. It can feel overwhelming at times, but know that you are not alone. At RMRA, we’re more than just a resource—we’re your village, here to walk alongside you and support you through this journey. In this blog, we’ve gathered insights from many Rett families, all to make life a little easier for those new to this path.

The therapies your loved one will need will vary, and their type and intensity should be discussed with your healthcare provider based on their progression. Core therapies often include:

Speech Therapy: Assisting with communication through non-verbal cues or augmentative and alternative communication (AAC).
Physical Therapy: Focusing on gross motor skills.
Occupational Therapy: Helping with daily living skills.

In addition to these core therapies, you might explore complementary treatments like nutritional/feeding, music, swimming, equine, hippo, and behavioral therapies. These can benefit your child’s overall development and well-being.

Heidi Hedges, Rett mom, explains what her daughter Ellie is doing on a regular basis: “In Fort Collins, we go to Integrated Pediatric Therapy for OT, TheraSwim for swim therapy, Iron Horse Therapeutic Farm for Hippo Therapy and Oasis Pediatric Therapy for PT. We haven’t found a speech-language specialist for Rett, but Summit Speech Therapy is one we have used. Also, Elevate Music Therapy!”

Managing all these therapies can be tough, and that’s why we encourage families to take advantage of services offering in-home support to ease the time burden. We also want to remind you that programs like the Colorado Medicaid waiver, especially the Children's Extensive Support (CES) waiver, can help cover many of these therapies if they’re included in the health plan.

Below, we’ve provided detailed information on different therapy approaches and providers available along the Front Range in Colorado. Know that we’re here for you, and together, we can make this journey just a little easier. If you know of any therapies outside of Colorado, please let us know. We would love to add them to our Rett Resources list.

Core Therapies for Rett Syndrome Children

Speech Therapy:

Speech therapy can be beneficial for those who have some speech or for those who use augmentative and alternative communication (AAC) devices. Across the Front Range, there are a few specialists who have experience in AAC-specific speech therapy. Inspiring Talkers, Children's Hospital - Audiology Speech Learning Department, and Jill Tullman and Associates. As expressive language is a common deficit in Rett Syndrome, it is best to start with an AAC evaluation to determine which device best fits you and your loved one. Consider consulting with Rett University to discuss the AAC world with consultants who understand the complexities of Rett Syndrome before committing to an AAC device.

Physical Therapy:

Physical therapy focuses on improving mobility and strength. As our Rett doctors say, “It is not always about gaining new skills with therapy but maintaining the skills they already have.” For individuals who are mobile, supported walking can help maintain their muscles and joints, while immobile individuals will benefit from spinal mobility and range of motion exercises in order to maintain their muscle tone. Using in-home visits for PT can help turn daily activities like standing and stairs into a therapy session. Along the Front Range, Solace is a good option for home visits. Rett mom Tonya Lynn Cooley-Wells recommended them highly when we asked for input: “Solace for OT and SLP! We love our therapists so much!”

Occupational Therapy:

Occupational therapy helps with activities of daily living, sensory processing, and even feeding therapies. Regular sessions are often recommended.

Add-On Therapies:

There are lots of options for add-on therapies, and we’ll keep adding new ones to this list!

Nutritional/Feeding Therapy:

Nutritional therapy can address dietary concerns and specific nutritional needs involving eating, swallowing, and digestion. While feeding, therapists can help with motor skills associated with chewing, swallowing, and lip and tongue placement. It is common for individuals with Rett Syndrome to be underweight and obtain a gastric feeding tube, but to aid in mealtime obstacles, therapists can provide assistance to the individual with Rett. This therapist can be either an occupational or speech therapist that specializes in this subfield.

Equine/Hippotherapy:

Equine therapy and hippotherapy are both therapeutic approaches that involve horses, but they differ in their methods, goals, and the professionals who oversee them.

Equine Therapy focuses on emotional and social growth, while hippotherapy focuses on medical and therapeutic outcomes. In equine therapy, the goal is to build confidence, self-esteem, and social skills through riding. In hippotherapy, the goal is to improve physical functions like motor control and balance using the horse’s movement. It's often part of a broader therapy plan aimed at improving a child's overall function in daily life.

Hippotherapy, on the other hand, is a medical treatment that uses the horse's movement as a tool in a formal therapeutic setting. It’s usually directed by a licensed therapist (such as a physical therapist, occupational therapist, or speech-language pathologist), who uses the horse’s natural gait to influence the child’s posture, balance, coordination, strength, and communication. The rhythmical movement of the horse simulates the way human bodies naturally move, which helps the child improve their motor control and sensory processing. Unlike equine therapy, the goal isn’t to teach the child how to ride the horse but to use the horse's movement as a way to achieve therapeutic goals.

There are many great horse therapies across the Front Range: such as Sundance Outdoor Therapy, located south/east of Denver or like Heidi mentioned above, Iron Horse Therapeutic Farm for Hippo Therapy in the Fort Collins area.

Music Therapy:

Music therapy can be an effective clinical intervention in the development of any child. Specifically with Rett, evidence suggests that music therapy can improve expressive, receptive, and socialization communication skills, along with decreasing hand stereotypies (clapping, tapping, rubbing, wringing etc.) and modification to the autonomic nervous system. Sessions may be weekly, and specialists can usually come to your house, which has the benefit of including siblings in some situations. One such group is Vital Care, serving clients along the Front Range.

Hydrotherapy (Water Therapy):

Hydrotherapy can promote relaxation, help with muscle tone, improve circulation and provide sensory input. This is a useful therapy to help those who suffer from dystonia (for example, involuntary muscle contractions). Sessions may be weekly or as needed.

Massage Therapy:

Like hydrotherapy, massage therapy can help with relaxation and pain relief coming from dystonia.

Behavioral Therapy:

Behavioral interventions, otherwise known as Applied Behavioral Analysis (ABA), can help manage challenging behaviors as well as develop new skills. There is some controversy regarding this therapy, so it is important to find the right therapist for your loved one. Child-led ABA practices will focus on your loved ones' interests and tailor goals for learning around them. There are both in-home and center-based services. Find one that best suits your loved one.

Respite Care:

This is not a therapy but can provide essential support for caregivers. Respite care allows caregivers to take a break while ensuring the individual is well cared for. Depending on your waiver, you can designate and hire a trusted individual (including a grandparent or even a sibling) to care for your loved one while you take time for yourself. Self-care will allow you to be present and dedicated to this challenging road. We have a list of Respite Care options for you on our Rett Resources page.

Therapy camps:

Conductive Education Colorado is working with individuals who have motor disabilities in a motivating social setting, a unique methodology encompassing motor, social, emotional and cognitive development. Check out the Colorado Foundation Conductive Education (CFCE) in Loveland and Arvada.

At Adam’s Camp, unique therapy and adventure programs are designed and delivered by dedicated therapists and counselors who help children, youth and adults with intellectual and developmental disabilities reach for the stars. These programs are combined with sibling and parent offerings that address the needs of the entire family and have created an amazing and supportive community for our participant families, our partners, and our sponsors. Join us for a therapeutic camp experience unlike anything else! To learn more, check out their website at www.adamscamp.org. The following images were provided by the Adams Camp:

Consult with healthcare professionals at the Rett Clinic to create a personalized therapy plan based on the individual's unique strengths and challenges. Therapy frequency and duration should be adjusted as needed to address the changing needs of someone with Rett Syndrome. Regular evaluations and communication with the therapy team are crucial to ensure the most effective treatment plan.

Therapies for individuals with Rett Syndrome