Tips on Using the Picture Exchange Communication System (PECS) On The Go

I previously wrote tips for setting up your home for the Picture Exchange Communication System (PECS), and now I'd like to share tips on using PECS when you travel.

The PECS manual recommends putting the PECS cards into a communication book that you tote around with you everywhere you go. For various reasons, I find this to be impractical for my family: The communication book is bulky and not ideal for traveling with, especially since we need to carry my son's meds, extra food for him due to his food allergies, etc. Plus, it's harder for my son to use than a fixed communication board.

So, I've experimented with different ways of using PECS when we travel. Based on my results, I present to you tips for using PECS when your child is riding in a stroller/buggy, going for a walk, or spending a night away from home.

1.) Using PECS in a Stroller/Buggy

After a lot of trial and error, this is the set-up that I've found works best for us:

To make the communication board, I started with inexpensive folders made of a vinyl-like material that would hold up in the rain:

I cut one of the folders into a rectangle using scissors, made some measurements using a ruler and pencil, made small holes using a single-hole punch, and attached adhesive-backed hook-and-loop fastener (e.g., VELCRO®) to one side:

To attach the board to the stroller, I decided to use a Chinese jump rope—made of a slender, stretchy rope-like material—for no other reasons than I came across it in a toy store, it was cheap, and it looked like it could work. I cut the Chinese jump rope into 3 long strands, which I threaded through the holes in the communication board:

Flipped vertically, it looked like this:

I secured the board to the stroller by threading the Chinese jump rope through the seat belt hole, wrapping it around one side of the stroller in various places, and tying it into 3 knots, like so:

An unexpected bonus: The stretchy Chinese jump rope is fun to play with, making for a nice hand-strengthening exercise!

I usually leave the most pertinent picture cards such as those for snack, drink, and "get out of stroller" on the communication board. Any additional picture cards that we might need while we're out, including duplicates, I bring in a zipper bag that I place in the back pocket of our stroller:

Here are some examples of picture cards that I keep in the zipper bag, most of which came from the Pics for PECS® Version 14 CD:

I'm guessing this stroller PECS set-up could also work for a wheelchair, though I haven't tried it.

2.) Using PECS on Walks

When my son and I go on walks, I like to bring this small PECS board:

(Don't mind the lint!)

I made this board similar to the one described here, just smaller.

Whenever we go out, I carry my son's little monkey backpack, which I use to store his emergency medications, diapering supplies, snacks, and a drink. Now that we're using PECS, I also include a PECS board and a zipper bag containing extra PECS cards:

I had some trouble figuring out how my son could request to see his communication board when we're on walks, but then it occurred to me that a PECS card for "communication book" could be attached to his shoes via hook-and-loop fastener since his shoes already contain hook-and-loop fastener. 

Now if my son needs something when we go out, he can reach down, take the card for "communication book" (we're using a board rather than a book, but close enough) off his shoe, and hand it to me. Then I show him his communication board, and he can let me know exactly what he wants.

3.) Using PECS on Vacation (or on a Family Visit or Hospital Stay)

My husband, son, and I recently went on vacation for my son's fall break, and we stayed in a small house/chalet at a park. For our PECS set-up there, I attached the small black communication board pictured above to a chair, using Chinese jump rope:

One nice thing about this set-up is that it's quick and easy to put the communication board up and take it back down. During our vacation, I would take the board down from the chair and put it in my son's monkey backpack to take on walks, and then when we returned, I would re-attach it to the chair.

Another nice thing about this set-up is that it's versatile: Almost anywhere you'd stay away from home would have a chair.

Also, if your child ever needs to stay in the hospital, like mine sometimes does, you could tie the Chinese jump rope (or other string/rope/ribbon/etc.) to the rails of the hospital bed.

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I hope you've found these tips useful. If you have any additional tips on how to use PECS on the go, please share them in the comments section below!

Finding a New Babysitter When Your Child Has Special Needs

© Katarzyna Bialasiewicz | Dreamstime

I recently had a babysitter disappear on us.

She just started working for my family in August, and we had gotten into a rhythm of her babysitting my 4-year-old son for a few hours every Saturday and/or Sunday morning while my husband and I went on "study dates"—what we call going to a cafe together to drink coffee as we work on our laptops.

My husband and I liked her: She had plenty of experience working as a babysitter, was unafraid of dealing with any seizures or allergic reactions that my son could potentially have, and mentioned on multiple occasions that she enjoyed babysitting him. She always seemed willing to babysit for us.

Until she didn't.

She mentioned a few weeks ago that she'd soon be working a few hours per week at a new job. Since then she has babysat for us at least once, two weekends ago, but then for the next 3 days that I asked about, she couldn't babysit because of being scheduled to work at her new job. That was understandable.

And then a week and a half ago, when I texted her about the possibility of babysitting this past Saturday and/or Sunday, she just...didn't respond. I sent her an email a couple of days later about a job opportunity I thought she might be interested in, and my husband sent her an email a few days later to follow up about babysitting this past Saturday and/or Sunday. But again, no response.

This experience has left my husband and me baffled. 

Is she too busy to babysit for us anymore? If so, why doesn't she just tell us that? Did we do something to offend her? Is something difficult going on in her personal life?

Without any contact from her, we can't know the answers. It sort of feels like a break-up where the other person just stops returning your phone calls. It's very confusing, but the only thing we can do is move on.

And so, we're moving on.

Earlier this week, I put up an ad for a babysitter on Care.com. I struggled a bit with how much to write about my son's special needs. I knew I needed to disclose his special needs because first of all, it was the right thing to do, and secondly, I wanted to hear only from candidates who would feel comfortable managing his special needs. But I didn't want to write so much that I would scare potential candidates away.

In the end, I opted to write a brief intro about my son being sweet, curious, and really into playing with toy vehicles and going on walks. Then I wrote about his most pertinent special needs: wearing braces (but being able to walk), needing to use gestures and pictures to communicate (but being able to understand most of what is said to him), and needing a caregiver who can administer emergency meds in case of a seizure or allergic reaction.

I haven't received replies from any promising candidates, but I feel hopeful that we'll find someone, one way or another.

We always have.

We've had several babysitters over the years, including one wonderful one who is still working for us, thank goodness. We just need some extra help on the weekends, when she isn't always available. 

Most of the babysitters we've found online using sites such as Care.com*, which allows you to view profiles and exchange messages. I know it can be scary using a new babysitter you've found on the internet, especially if your child has special needs, so if you're new to this, here are some tips I have for becoming more comfortable with a candidate babysitter:

1. For the first meeting, meet with the candidate babysitter at a neutral, kid-friendly location, such as a kid-friendly cafe or the children's section of the library. Bring your kid along, and see how the babysitter interacts with him. Is she warm towards him? Is she playful? Ask her questions about her babysitting and other work experience. Does she ask you questions, too? In my opinion, it's a good sign if she does. If you feel comfortable, schedule a trial babysitting session with her.
2. For the trial babysitting session, stay nearby. For example, if the babysitter is playing with your kid downstairs in your home, hang out upstairs and clean, rest, work on your computer, or whatever. That way, if the babysitter has questions, you can answer them on the spot, or if she needs to be trained in, say, how to feed your kid his snack, you can pop in at snack time, show her how it's done, and then go back to your hang-out place. Plus, you can listen to make sure your child is being kept safe. 
3. If the trial babysitting session goes well—you and the babysitter can decide what "goes well" means—then schedule another babysitting session. Continue staying nearby during babysitting sessions until both you and the babysitter feel comfortable with you leaving.

I hope you find these tips helpful. If you have any additional tips, please share them in the comments section below!

*Disclaimer: I'm not being paid by Care.com; I just like using their site.

Special-Needs Parenting Fantasy Vs. Reality #2

Parenting a kid with special needs doesn't always go as planned. For me, it didn't always go as planned back in the spring, and it hasn't always gone as planned this fall, as shown in these 5 scenarios:

Fantasy #1: I'll do some dishes, tidy up the house, and run some errands in the afternoon before picking kid up from school.

Reality: Kid's teacher calls at 1 p.m. and says that kid has been coughing a lot and is running a slight fever and could I please pick him up early? 

When I arrive at school, kid is sleeping, and assistant carefully transfers him into stroller. Ten minutes after we leave, kid wakes up, looks at me, and says "go," which means he wants to walk. He spends the next 30 minutes pushing stroller to store and speed-pushing a large shopping basket through store.

Was he just pretending to be sick?! 

(If so, I'm impressed.)

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Fantasy #2: I will clean kid's bedroom and the upstairs bathroom before the babysitter arrives.

Reality: Kid is whiny. He wants to go outside and watch buses and cars go by. I decide to give him the next best thing: I set him on a stool next to my bedroom window (2nd floor) so that he can look down at the buses and cars going by on our busy street. 

He watches the buses and cars while I clean. Having come up with this solution, I feel rather clever. (Reality: it was not all that clever.)

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Fantasy #3: I will give kid a receptive language test to see how well he can discriminate between different motor vehicles: I will place 6 types of toy vehicle within his reach on a side table and first ask him to give me the train, and then each of the other 5 vehicles. I will film him and send the video to his special education team.

Reality: I say "Give me train." Kid puts right (good) hand on train, but it is in 2 pieces and too difficult to pick up with one hand (parenting fail), so he plays with train and bus for 2 minutes while ignoring my repeated requests for train. 

(To his credit, he does pretty well on the test a bit later.)

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Fantasy #4: I will train kid further in the Picture Exchange Communication System (PECS) during afternoon snack time. He will sit in his special high-low chair, and I will give him a communication book containing detachable pictures of 3 highly desired foods. He will give me the picture of the food he wants most, and I will present him with a tray containing small pieces of all 3 foods and say "go ahead and take it." If he takes a piece of the food that matches the picture he gave me, he will be praised. And repeat.

Reality: I set up all of the materials for a PECS training session. Kid is playing with cars when I tell him it's time for snack. He complains, and I say, "Okay, play with cars more first, then snack." By the time he finally wants his snack, it's too close to dinner time to do a long PECS training session. Plus, he's fussy, so he ends up eating his snack seated on my lap.

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Fantasy #5: Kid and I will go to a Music & Movement class on Saturday morning. We will have a lovely train ride there and a lovely time at the class.

Reality: Guy sitting in front of us on train pukes into the aisle. Kid tries to grab onto back of guy's seat, while I try to block kid and say "Don't touch! That's yucky," which results in kid screaming.

We do have a lovely time at the music class, though. Kid especially enjoys playing with egg-shaped maracas and a triangle, which he plays with 2 hands. Two hands!

After we get home, kid goes to his play kitchen and is excited to find a pretend plum. He shows it to me and tries to shake it because it is egg-shaped and he thinks it is a maraca.

I feel proud...

...and he throws it on the floor.

Glad that wasn't really an egg.