pms family tips and tricks resource guide · you know your child best, so use your own judgment on...

PMS Family Tips and Tricks Resource Guide

Phelan-McDermid Syndrome Foundation 200 Capri Isles Blvd, Suite 7F pmsf.org

Venice, FL 34292 (941) 485-8500

2 6/27/2018

PMS Family Tips and Tricks Resource Guide

By families, for families, this guide shares real life solutions. Some are creative "Life Hacks" and others are favorite products that work for challenges facing many families of children and adults with PMS.

Every person diagnosed with Phelan-McDermid Syndrome is different, so what works for one may not for another. You know your child best, so use your own judgment on these suggestions from fellow parents.

If you have a tip you would like to share with other parents, please contact Meghan Howie at [email protected].


Venice, FL 34292 (941) 485-8500

mailto:[email protected]

3 6/27/2018

Table of Contents

Category Starts on Page

Car 4

Clothing 4

Communication 6

Community essentials 7

Cooling 8

Diapers & Toileting 9

Eating & Drinking 11

Essentials 15

Fine motor 16

Fleece hacks 17

Gross motor skills 19

Haircuts 20

Hygiene 20

Medicine 21

Safety 21

Seating 24

Sensory 25

Shoes 26

Sleeping 27

Travel 29

Wheelchairs 29


Venice, FL 34292 (941) 485-8500

4 6/27/2018

Tip or Trick Category Product Link Photos

Use a seat buckle guard to prevent your PMSers from unbuckling in the car - like this one from BuckleBoss. Car Buckle Boss (Amazon)

Use a boat cushion in the car to protect the car seat from accidents. Attach using LATCH anchors in the backseat. Car

When we don't have the car harness, we use all three seatbelts in the back as a substitute harness. Car

Little Keeper Sleepers - sleepers that zip up the back to prevent disrobing and diaper diving. Clothing http://littlekeepersleeper.com/

Canvas bibs can redirect chewing on shirt collars and protect clothing from drool Clothing

Plain leotards from Wal-Mart also keep hands out of diapers. Cheaper, comes in long sleeve and tank top too. Clothing walmart.com

Add a loop of string or key ring to the zipper pull to help make zipping easier. Clothing


Venice, FL 34292 (941) 485-8500

http://a.co/cV92PLT

http://littlekeepersleeper.com/

https://www.walmart.com/ip/Danskin-Now-Girls-Long-Sleeve-Dance-Leotards-2-Pack-Set/14540406

5 6/27/2018


Wear sweat wicking headbands around neck to redirect chewing on shirt collars. Clothing shop.lululemon.com

Use a zip tie to replace a broken zipper pull or prevent chewing on the existing zipper pull. Clothing

To keep clothes on, try having a zipper installed in shorts and pants sewn together. Clothing

Wearing a wrestling singlet underneath clothes helps keep clothes on and prevents diaper diving. Clothing

Trim chewed sleeves to turn long sleeve shirts into short sleeves Clothing

Draw small hearts on the inside of shoes. Hearts will be facing when shoes are put on the right way. Clothing


Venice, FL 34292 (941) 485-8500

https://shop.lululemon.com/p/wome-headbands-hats/Fly-Away-Tamer-Headband-II/_/prod8260025?rcnt=6&N=8bu&cnt=13&color=LW9AA1S_028758

6 6/27/2018


Use voice recording button as a cheap alternative to recordable switches. Use to read a book by recording repeating phrases. Or mount in doorways to request opening a door, for example. Communication Voice recorder (amazon.com)


Venice, FL 34292 (941) 485-8500

http://a.co/hRUIWZ9

7 6/27/2018

Hack Category Product Link Photos

Community - ready bag. This is a three-compartment handbag. It serves many purposes: 1. A visual/object that means “I want to go out in the community” or “get ready to go out” 2. It is a weighted sensory support. Carrying it provides stability. 3. It contains personal effects like ID, medical card, iPad, iPod headphones, house keys, medical release and care forms, receipts from community outings, meds, parking placard, personal care supplies, and change of clothes. 4. It’s always ready to go, making it easy to be out and about! A backpack could be a good choice for some people too.

Community Essentials


Venice, FL 34292 (941) 485-8500

8 6/27/2018


Put ice packs in the car seat on days to keep seat cool. Cooling

Use Evian water spray to cool down when out and about. Or do it yourself by carrying water in a spray bottle. Cooling Evian water spray (Amazon)

A stroller umbrella works well as a sun shade for a wheelchair. Cooling


Venice, FL 34292 (941) 485-8500

http://a.co/5jTcHtY

9 6/27/2018


A cooling vest can help keep your PMSer comfortable and safe outside - like this one from Polar Products Cooling www.polarproducts.com

Set a pet cooling mat inside your child’s stroller/wheelchair/seat/ bed sheets to keep cool in warm temperatures Cooling

Double diaper to prevent leaks Diapers & Toileting


Venice, FL 34292 (941) 485-8500

http://www.polarproducts.com/polarshop/pc/Cool-Kids-Cooling-Vest-p1906.htm

10 6/27/2018


Put incontinence (like Poise, Depends) pads or maxi pads inside diapers to prevent leaks.

Diapers & Toileting

DIY potty training pants: line underpants with cloth towel

Diapers & Toileting

Instead of a diaper bag, carry a zippered makeup bag and tote for essentials (think Vera Bradley).

Diapers & Toileting www.verabradley.com

Instead of a diaper bag, carry a backpack (L.L. Bean is a favorite)

Diapers & Toileting www.llbean.com


Venice, FL 34292 (941) 485-8500

http://www.verabradley.com/

http://www.llbean.com/

11 6/27/2018


We use reusable waterproof diapers on top of the regular diapers at night and it’s been working amazing. No more wet sheets in the morning. I did have to buy a few of the waterproof diapers cause those end up getting wet.

Diapers & Toileting www.especialneeds.com

Install a quick shut-off valve for the toilet.

Diapers & Toileting

Place a contrasting color square of dycem (non slip material) on the dining room table as a target to place the sippy cup.

Eating & Drinking Dycem (Amazon)


Venice, FL 34292 (941) 485-8500

https://www.especialneeds.com/shop/bath-toilet-incontinence/diapers-and-incontinence-products/swim-diapers.html

http://a.co/0oae1yl

12 6/27/2018


Ceramic egg holders make great snack trays. Out OT told us it helps develop fine motor skills. Get color that contrasts with placemat.

Eating & Drinking Egg holder (Kohl's)

Use non-slip grip shelf liner as a placemat to help keep things from sliding off counter. It is washable and does not pick up extra stuff like the solid Dycem. Use a color that contrasts with counter and dinnerware to provide improved visual field.

Eating & Drinking Shelf Liner (Dollar General)


Venice, FL 34292 (941) 485-8500

https://m.kohls.com/product/prd-966669/rachael-ray-sittin-pretty-egg-carton-tray.jsp?ci_mcc=ci&utm_campaign=TABLEWARE&utm_medium=CSE&utm_source=google&utm_product=92355862&CID=shopping15&utm_campaignid=196835012&gclid=EAIaIQobChMIs9u05pn02QIVkIuzCh1kjA7zE

https://www.dollargeneral.com/griprite-non-slip-shelf-liner-natural.html?gclid=EAIaIQobChMIsu7nzpf02QIVB4zICh1htAw9EAQYBiABEgIFhPD_BwE

13 6/27/2018


Copco cup decent to reduce spills with kids who can hold a cup. Works without or with straws. These are expensive, but maybe not as expensive as kiddie cups: Can sometimes find on sale in supermarkets for $3.99. We only use one brand to avoid the ‘lost cover syndrome’

Eating & Drinking copco.com

Use binder clip with a kitchen towel while eating to create a bib. Throw the binder clip in your bag to create a bib on the go with restaurant napkins.

Eating & Drinking


Venice, FL 34292 (941) 485-8500

http://copco.com/product/the-original-to-go-cup/

14 6/27/2018


PUL fabric can be purchased by the yard to be used under chairs to catch spills and crumbs.

Eating & Drinking

Use a condiment bottle to deliver liquids if a child is refusing to drink

Eating & Drinking

Fill an empty juicebox with water for times when a child is drinking juice but refusing water.

Eating & Drinking `

We have found that the spoons from Menchies frozen yogurt are the perfect size and weight for [my son] to use for meals.

Eating & Drinking http://www.menchies.com/


Venice, FL 34292 (941) 485-8500

http://www.menchies.com/

15 6/27/2018


Making bibs in matching material to outfits makes them less obvious once your child is past a bib appropriate age.

Eating & Drinking

We added a piece of plywood to the top of our dining table and cut out a space for [our son's] Keekaroo chair. Makes feeding much easier for him and us!

Eating & Drinking

Amazon Subscribe and Save for regular delivery of essentials, like antibacterial cleaning wipes. Essentials amazon.com

Use Fax Zero for faxing doctors and schools. Free if under 3 pages and includes an email confirmation. Essentials http://www.faxzero.com


Venice, FL 34292 (941) 485-8500

https://www.amazon.com/b/ref=rcxsubs_details?ie=UTF8&node=15283820011

https://l.facebook.com/l.php?u=http%3A%2F%2Fwww.faxzero.com%2F&h=ATOlBWv8jhvqWS2EPK8YdUA7D-z6yfbkecxltMWQBRIWMvtqRVsVlnEM7DaqfLDoF5hgyhW56CO8tDK6eyGgRA7nw4b4vbM8tKnOmbRWQ9YifpQPyBc9m649nJGFmBxrYA

16 6/27/2018


Fine motor activity: pull ribbons through holes in a box. Fine motor

Binder clips on a puzzle helps those with fine motor challenges grab the pieces Fine motor


Venice, FL 34292 (941) 485-8500

17 6/27/2018


Put clothes pins on book pages to make them easier to grip and turn. Fine motor

Fleece hacks! Use pieces of fleece fabric and Velcro tape to tie down toys.

Fleece hacks

Use a strip of fleece fabric to tie down cups or objects on the counter. “He can still get a drink but he can't run off with it and throw it, or spit it on my rug”

Fleece hacks


Venice, FL 34292 (941) 485-8500

18 6/27/2018


Fleece tie a tablet to the bottom of an ottoman so it can't be thrown.

Fleece hacks

Use fleece fabric strips to tie chewies everywhere: car seat, stroller, high chairs, play areas.

Fleece hacks


Venice, FL 34292 (941) 485-8500

19 6/27/2018


Use a fleece tie plus round chewy as a drink holder in the stroller. Drink stays attached, even when thrown.

Fleece hacks

Add a platform to adapt baby bouncers, jumparoo for larger kids

Gross motor skills

Use PVC pipe to make a frame to dangle toys, bells, mirrors, iPad, etc. during floortime

Gross motor skills

Add PVC pipe to a swing frame to make it tall enough as your child gets larger

Gross motor skills


Venice, FL 34292 (941) 485-8500

20 6/27/2018


My husband recently bought a Flowbee so he could cut [my son's]s hair himself. I was opposed, but I admit it worked pretty well. Not a bad haircut and MUCH quicker than having a professional work around his constant movements. Haircuts https://www.flowbee.com/

Use a bite block to prop mouth open safely while brushing teeth. Hygiene Bite block (Amazon)

For teeth brushing, we lay our daughter back down with her head towards us and place her arms under our legs. This really makes for a lot less fighting. Hygiene

When brushing your child’s teeth, use two brushes. One to keep mouth open and the other to brush with. Hygiene


Venice, FL 34292 (941) 485-8500

https://www.flowbee.com/

https://www.amazon.com/gp/aw/d/B01M0Q8ALR/ref=mp_s_a_1_7?ie=UTF8&qid=1522970364&sr=8-7&pi=AC_SX236_SY340_QL65&keywords=bite+block&dpPl=1&dpID=41jPLuSab3L&ref=plSrch

21 6/27/2018


Floss picks can be faster than brushing teeth or standard floss. Hygiene

Mix crushed or broken pills with juice using a frother to liquefy meds that only come in pill form. The frother listed can mix in a small cup, like a protein powder scoop - great for travel. Medicine Milk frother (Amazon)

Put pills in applesauce, yogurt, Cool Whip or other soft food if they can’t be swallowed on their own. Fruit may also work - like grapes or mandarin orange segments. Medicine

Cut blind cords short to prevent blinds from being pulled down. Safety


Venice, FL 34292 (941) 485-8500

https://www.amazon.com/Vremi-Milk-Frother-Stainless-Automatic/dp/B01H0A3YAU/ref=sr_1_2?s=kitchen

22 6/27/2018


Attach stuffed animals to sharp furniture corners/edges with zip ties to protect PMSers from injuring themselves. Safety

Use a pinch dog collar to hold side-by-side fridge handles together to prevent easy access. Safety

Call your local police department to see if they have a program that automatically sends first responders when a call comes from your home without having to talk. This has saved a life in our house. Safety

Use a marine lock refrigerator lock- it locks with a keyed padlock. Safety marinelock.com

Use pool alarms for any door (inside or outside) to notify you if people are where they shouldn't be. Safety


Venice, FL 34292 (941) 485-8500

https://marinelock.3dcartstores.com/mobile/Black-Refrigerator-Lock_p_16.html

23 6/27/2018


Secure drawers or closet doors by removing the knobs. Safety

Quirky Bands: Use as a cabinet lock. Screw an eye hook under cabinet frame, clip on Quirky Hook and use the bungee to hook over cabinet knobs. Looks much better than child locks especially as PMS child grows to adulthood. Safety Quirky Bands (Amazon)

When my daughter went through a door swinging/slamming stage we took a foam pool "noodle" cut a slit through it and wrapped it on to the door. The behavior vanished within a day! Safety


Venice, FL 34292 (941) 485-8500

http://a.co/dpYDHVR

24 6/27/2018


Custom refrigerator lock my husband came up with! (All the plastic 'kiddie proofing' locks were broken)It works great when you remember to set it! Safety

I cut out the bottom of a Tupperware container to put my old phone in, taped it shut and put a piece of fleece to tie onto his stroller so he can have videos to look at while we were at the doctor's office. This was a temporary replacement until I got his tablet replaced without him eating my phone. Safety

Put Dycem on the chair so the child won't slip/slump! Seating Dycem (amazom.com)

Use a back support belt to keep child upright while eating. Seating

We collect old (expired) car seats and attach them everywhere, couch, porch swing, golf cart etc. Seating


Venice, FL 34292 (941) 485-8500

http://a.co/0oae1yl

25 6/27/2018


Use a Boppy pillow as a seating support. Seating www.boppy.com

Car seat bolted to lazy susan makes an awesome sensory chair Sensory

Sensory room ideas:

Use a playpen/kiddie pool as a ball pit

Glow in the dark stars

Switch activated disco ball, bubble machine, and/or music

DIY crash pad: duvet cover filled with pillows, cushions, foam pieces

Peanut ball

Weighted blankets

Vibrating pillow

Mini trampoline

Sensory board: board mounted with different objects to manipulate and feel. Sensory

We use a mouth guard as a chew when needed Sensory


Venice, FL 34292 (941) 485-8500

https://shop.boppy.com/b2c/product/boppy-classic-feeding-infant-support-pillow

26 6/27/2018


Create a musical toy that lasts or provide protection for an iPhone by putting an iPhone with playlist inside a Beanie Baby. Sew back up or secure with packing tape Sensory

Zubits are magnetic shoe closures that make it super easy to get shoes on and off with AFOs. Shoes https://zubits.com/


Venice, FL 34292 (941) 485-8500

https://zubits.com/

27 6/27/2018


Kneehigh converse (with side zip) shoes are easy for caregivers to take on and off, but too much of a challenge for {my PMSer} to remove quickly Shoes Converse (journeys.com)

Use a single doona cover or comforter instead of many layers of bedclothes. Easier to make the bed if your child tends to strip the bed. Sleeping

I make my own water proof mattress protectors. I can make with sheet materials and fun waterproof fabric. I make them all sizes. I like larger ones for his bed. If he soils the bed at night, I'm just changing the protector and not the sheets. I also make a smaller one for his stroller to protect it from accidents and one for the car to protect the seat. Sleeping


Venice, FL 34292 (941) 485-8500

https://www.journeys.com/kidz/product?id=385072

28 6/27/2018


Privacy Pop bed tent for safe sleeping. Sleeping www.privacypop.com

Use binder clips to keep the curtains together and eliminate gaps for sunlight. Sleeping

Ensure complete darkness in the bedroom by attaching strong magnets to blackout curtains (sew in or use gorilla tape). Use magnets to hold curtain flush to metal blinds or window frame. Sleeping

Iron curtains together using iron-on hem tape to block light from coming in between curtains. Sleeping

Hold curtains together with pegs. Sleeping

Put tinfoil on windows to keep light out. Sleeping


Venice, FL 34292 (941) 485-8500

https://www.privacypop.com/

29 6/27/2018


If you are travelling with your PMSer by air, contact TSA Cares at least 72 hours before your flights. A TSA agent will call you and meet you at the security check in and escort you through. You will not have to wait in line at security check point. They will help you through and make the security as smooth as possible (which may include a practice run through security or boarding!). Travel www.tsa.gov

Attach stroller caddy to wheelchair back to carry essentials (drink, diapers, wipes, snacks) Wheelchairs

For a wheelchair without ankle straps, tie shoelaces to the footrests to prevent feet scooting or dragging Wheelchairs


Venice, FL 34292 (941) 485-8500

https://www.tsa.gov/travel/passenger-support

pms family tips and tricks resource guide · you know your child best, so use your own judgment on...

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