Resources

Resources

Expectations for Your First Occupational Therapy Visit

Lacey OTR/L, an occupational therapist at Roots Therapy in Park City, UT shared some insights on what to expect before the first visit, during the first visit, and what to expect during subsequent sessions. She also shared what makes therapy successful for parents and kids.

Mariah: THAP12 Mutation

Mariah: THAP12 Mutation

Having the only two known cases of a genetic mutation called THAP12, Mariah has used her daughter's condition for good.  She is a fierce advocate by paving the way for future research to help others who may receive the same diagnosis. THAP12: The Only Two in The...

Resources by Topic

Prenatal Resources

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Resources for Infants, Toddlers & Kids

Toe Walking

Toe Walking

Often this pattern of walking becomes an “engrained motor pattern” or habit that needs to be broken. If stretching isn’t helping, they may require stretching braces for night time or Ankle Foot Orthoses (AFOs) braces for the daytime to help break the habit. Some orthopedic physicians or neurologists use a series of casts called serial casting to stretch the tight muscles and tendons.

Caregiver Resources

How Can I Help My Child Sleep at Night?

How Can I Help My Child Sleep at Night?

Although sleep issues can be common with many kids, children with autism spectrum disorder (ASD) can often have an especially hard time falling asleep and staying asleep. Chronic sleep problems not only negatively impact the learning ability of children and make challenging behaviors more likely to occur, but they can also increase stress in the home by making it more difficult for parents and siblings to rest at night.

Resources for Adults with Special Needs

How Can Your Child Practice Social Skills at Home?

How Can Your Child Practice Social Skills at Home?

If your child would benefit from continued social skills practice during this time at home, there are a variety of different activities that can be used to target social skills virtually via platforms such as Facetime, Skype, or Zoom. Many children who are currently working to improve their social skills require cues and reminders for appropriate body language, eye contact, and topic maintenance.

Resources

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Community Stories

Emma and Abby

Emma and Abby

Meet Emma and Abby...two sisters battling one Ultra-Rare disease! Emma, now four, had her first seizure when she was only 2 months ... ...read more

Shiloh

Shiloh

Our sweet daughter was born two months premature with a genetic condition called Cri Du Chat Syndrome. She is missing part of the ... ...read more

Sock Talk 

Sock Talk: A Doll Like Me with Amy Jandrisevits

Sock Talk: A Doll Like Me with Amy Jandrisevits

Amy Jandrisevits created A Doll Like Me, so kids with physical differences could love and cherish their very own doll that looked exactly like them. She personally makes each doll by hand, and to date she has raised more than $225,000 to help off set the financial burden for those who could not otherwise afford a doll.

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Sock Talk: Go Shout Love

Sock Talk: Go Shout Love

In this episode, Gerald talks with Josh Veach, the co-director for Go Shout Love. A cause-driven for-profit  business that raises funds and awareness for families on unique medical journeys.  Go Shout Love The Formation of Go Shout Love Go Should Love...

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Newsletter

Good news in your inbox

Every four and a half minutes a child is born or diagnosed with a condition parents never dreamed would be their reality. If this is you, you’re in the right place. You’re not alone.

September 2020 Newsletter

A couple years ago I had the opportunity to do an interview with Stephanie and Andy. Their story was both heartbreaking and inspiring. In the interview, they share their profound experience of having a child with a terminal diagnosis of anencephaly. Similar to...

August 2020 Newsletter

A couple years ago I had the opportunity to do an interview with Stephanie and Andy. Their story was both heartbreaking and inspiring. In the interview, they share their profound experience of having a child with a terminal diagnosis of anencephaly. Similar to...

July 2020 Newsletter

A nonprofit in Philadelphia, Pennsylvania, Pegasus , “[provides] therapeutic horseback riding programs and equine-assisted activities and therapies for children and adults with physical, developmental, and intellectual disabilities.” Not long ago, I did a...

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