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Your Pearls of Wisdom – Advice From Parents

Pearls shared at the conference:

Do you have other pearls of wisdom to share with other families?

  • Starting therapy (PT, OT, etc) early. (We don’t have much experience at 11 months)
  • Medical marijuana infused oil stops seizures. Also caregiver CNA program in Colorado
  • One major game changer for KoKo was taking hippotherapy. She loved riding the horse 
  • Good support system, eg. Team at school and family
  • Keto diet. Seizure free for 3 years!
  • ABA
  • Baby Delight Go with me chair = great chair to take on the go up to 75lbs
  • The 6 F-words in childhood disability: Function, Fitness, Fun, Family, Friendships, and Future www.canchild.ca/en/research-in-practice/f-words-in-childhood-disability/f-words-footprint
  • McMaster University in Canada-CanChild Dr. Peter Rosenbaum
  • Hippotherapy and AAC sign language
  • Obtaining the diagnosis has been a game changer for us. Knowing the culprit behind our sons condition gave us a target to concentrate our energy. Finding STXBP1 facebook community and now the STX BP1 Disorders foundation gives us hope and energy. 
  • Communication device – we use PODD (through school) 
  • Sarah Loving SLP Collier Center at University of Texas at Dallas, helped establish a program for assistive technology. Got Morgan on Words for Life LAMP. 
  • FODMAP diet (reducing/eliminating certain sugars) 
  • Music (Disney movie soundtracks cures times of frustration- keep favorite songs downloaded on your phone)
  • Music has been our best motivator. We hold chimes to motivate her to propel her gait trainer to using music as a calming agent when she is upset. 
  • Just knowing that so many people are
    • 1. Affected by STXBP1
    • 2. That this group has done so much to help families 
  • Self care- its ok to feel overwhelmed at times. I have found that therapy and medication have helped me as a parent 
  • Programs/services/items as a benefit through insurance, especially medical assistance. Look deeper into yours: WIC for under 5yo, ½ price Amazon prime, diapers and wipes are covered, Y memberships with some insurance 
  • Weighted vest (homemade) helps his ataxia and seems to improve gross and fine motor practice
  • Intense therapists have made all the difference. PT makes no excuses and has high expectations. ST is very hands on and uses prompt method which he receives very well. 

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