Liam-Jacques Bissonnette
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Additional and increased costs of having a child or young adult with Angelman Syndrome

If you're an angel parent like me, you'll look at this list and think "Holy cows, we also spend money on almost all of that list!"

Thank you to my extended Angelman Syndrome family on Facebook for the help in expanding this list.
Not all families will experience these costs, but for many, a very large percentage of them are a common and every day fact of life.

  1. Additional food (from wastage due to messy eating, food thrown about, knocked off table, etc)
  2. Increased laundry costs due to sheer volume of cleaning (soap, softener, water, electricity)
        Additional costs if living location requires pay laundry (apartments, condominiums, etc)
  3. Increased washer and dryer maintenance and replacement costs due to excessively high laundry use
  4. Increased household cleaning costs (floor cleaner, window cleaner, bathroom cleaner)
  5. Increased carpet & furniture cleaning costs from steam cleaning (diaper leaks, vomiting, G/GJ tube leaks, food messes, drool)
  6. Increased frequency of carpet replacement
  7. Increased replacement cost of cups, bowls, plates, mugs (thrown from table, counter, etc)
  8. Increased cost & loss of wages from frequent doctors and specialist visits (fuel, parking, vehicle wear & tear)
  9. Increased clothing replacement cost from excessive washing (diaper leaks, vomit, G/GJ tube leaks, food messes, drooling, tearing, etc)
        Additional winter clothing replacement costs, such as jackets, snow pants, mittens, hats from both excessive washing and loss/damage from angel
  10. Lifelong diaper costs (Liam's is ~$300/month)
  11. Sanitary/hygiene costs for school caregivers, respite caregivers (gloves, wipes, sanitary gel)
  12. Medication costs (sleep, seizure, behaviour, illness medications)
  13. Increased health insurance/co-pay costs due to severity of disability and frequency of medical visits (for US residents)
  14. Increased furniture replacement costs (mattresses, couches, chairs)
  15. Additional household safety costs (door locks, alarms, fridge/cabinet locks, child gates)
  16. Specialized bedding costs (secure beds/hospital style beds, low profile beds)
  17. Increased linen costs (sheets, fitted sheets, quilts/blankets & towels) from massively higher frequency of washing
  18. Wheelchair acquisition costs
  19. Wheelchair maintenance & repair costs
  20. Specialized equipment, such as gait trainers, walkers, adaptive tricycles, strollers, standing frames + maintenance & repair
  21. Specialized lift equipment for bath and/or changing (ex: track systems, hydraulic lifts, etc)
  22. Increased childcare costs due to additional training often required by babysitters, respite providers
  23. Respite costs, both in and out of home
  24. Specilized educational costs, such as PECS, communications boards, computer communication applications, teaching aides
  25. Increased household damage costs, such as windows, walls, moulding, curtains, trim, from angel damage
  26. Increased household item/electronic replacement costs, such as televisions, telephones, stereos, computers, radios, & other appliances from angel damage
  27. Car safety equipment, such as specialized car seats & restraints, which become increasingly expensive as the child grows
  28. Loss of wages from frequent need to attend to child emergencies, special care, school issues
  29. Specialized equipment such as glasses, AFOs, back braces
  30. Additional costs for therapy/counselling for parents! (Ex: Grief, stress, burn out, etc)
  31. Cost of divorce, given the frequency of divorce amongst parents of handicapped children is anywhere from 50% - 80% higher than the national average (numbers vary by study and disability)
  32. Increased costs for chiropractic/back care for parents, due to frequent lifting of increasingly heavy (and often non-cooperative) child
  33. Therapies such as hippotherapy, water therapy, (therapies that help with fine and gross motor control, sensory improvement and the like)
  34. Day programs and drivers, as it is not uncommon for schools to refuse transport or care of angels who are particularly disruptive or unruly, which often results in the extra costs for the transit and daycare, and/or lost wages while parent accomodates the school
  35. Therapies that are not covered after certain age (usually 16-18, varying per state/province)... ie speech therapy, occupational therapist, physical therapist, behavioural therapist, psychiatry.
  36. Additional costs for handicap advocates, which are often needed to assert the rights of the child within a school, day care or residential program
  37. Additional medical costs for the caregiver/parent due to injury such as cuts, broken bones, punctures, falls, back injuries, broken noses (head smashes to the caregivers face are not uncommon)
  38. Legal costs for advocacy/fights for childs' needs/rights within the school, community or living environment.
  39. Additional insurance costs against damage to the home and household items from Angel damage
  40. Assisted living/group home costs, after Angel leaves home

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