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Be there for them, spend time with them, get to know them, support em through the good and the bad, try to understand what they're going through.
Here's a few things that have helped us with this disease:
Heating blankets Helps Their Aches And Helps Them Sleep
Air Conditioners
Sensory Items (Fidgets), They are often squishy balls that feel different helps with sensory and strengthens hands
Bed Surround So They Don't Bang Against Bed Rails Or Fall Out Of Bed
Walker
Balls From Ball Pits Often Calm Them
Body Sox Calm Them
Pressurized Vests Or Weighted Item Clam Them
Stroller/ Wheelchair
Bath Chair/ Potty Chair
Cups That Monitor The Amounts That Come Out Of It
Special Socks For When They Rub Against Things
DVD Players or Music Players for when they get upset or overwhelmed, they now have 'kid tough' dvd players, music players with big buttons and that don't break easily
Televisions yup those help alot
There's alot of games out there that help with speaking, memory, etc like guess who
Rocking Chair helps with the calming and movements
Straws very helpful when it comes to drinking but sometimes doesn't work due to the work it takes to suck the liquid up the straws
Ispy books
Pads of all sorts for the falls, knee pads, elbow pads, pads for under tables, around beds, pretty much anywhere that you think should be padded
Balancing Boards
Wii Fit helps improve balance, movement, hand eye coordination, and it's just plain out fun
Excersize Balls
If they can't drive and want to get around try a golf cart, scooter, go kart they don't require licences
Hand Braces
Foot Braces
Therapy Putty helps strengthen hands and counts as a fidget
Flat Shoes that supports whole foot and can even find some called high tops that support the ankle too
There's page turners where you press a button and they can turn the page that way
Dynavox/ speaking device
Noise Reduction Headphones for when they listen to music or watch dvd or anything to reduce stimulation and they don't fall off as easy with movement disorder
Non- spill cups they don't spill over when dropped
Diaper Genie keeps the house smelling good and holds messes easily
Milkshakes/ puddings/ jellos/ wafers help when they get low on calories and have a hard time with intake
Shower Head With Detachable Sprayer
Ceiling things like star shadow or anything to decorate the ceiling when they get advanced
Ice Pack Rolls/ Gel Ice Packs
Tag-less ,seamles clothing
incline board
carnation instant breakfast, or scandi shake suplement juice boxes/by boost,ensure,water bottle at school
padded seatting in school
spirometer
alternating preasure mattress
nuk/oral exercises
memory foam pads
5 point harness booster seat on chair
special needs carseat
versaform cushion
breastfeeding pillow for positioning,pillows of all sizes
cotton beeding,bathblankets
bandanas for clothing protection
sheepskin covers
pulse ox with ekg reading and recording ability and core oxegyn sensor
B.Preasure cup
stethascope
thermometer
baby moniotors
future phone/programable
wheelchair ramp
fingertip crayons and paintbrushes
sand tray
moonsand
magnetic games
puzzels
large button remote
daily medication organizers
heated mattress pad
cooling mat
punching bag,for agression
balloons,balls of all sizes shapes textures
button and seashell collection
beadding sets
lots of HUMOR
hammock swing/ airwalk swing/ platform swing
Food Grinder
Use calenders to organize nurses, doctors, anything you need to remember it helps alot trust me, you can even use them to write down events that happened that day to help with memory
Make lists of things to remember for doctors or new symptoms, what date they happened, and things that helped them, or if they do chores keep a list of what chores
Post up little reminders when they need them about closing doors, how to wash dishes, how to shower, how to get dressed etc always get copies of medical tests and consults for helping to coordinate medical care
What i've found to help anxiety wise is progressive muscle relaxation http://www.anxietybc.com/resources/pdfs/MuscleRelaxation.pdf and calm breathing http://www.anxietybc.com/resources/pdfs/CalmBreathing.pdf if they get angry it usually helps to have them walk away and calm down
behavioral modification therapy
art therapy
massage therapy
water therapy
music therapy
Tichi
Yoga is good for hd
Physical Therapy
Occupational Therapy
Speech Therapy
clapping therapy/pulminary therapy
Please email me so we can keep the list and information growing on here! jacecat_99@hotmail.com
