Preserving Energy as a Parent of a Child with Special Needs

© Andrey Moisseyev | Dreamstime; modified by me

I've been saying "no" to a lot of things lately.

Last school year, I was a member of the Parent Committee (similar to a Parent-Teacher Association or Organization) at my son's school. At the beginning of this school year, I had to tell the school's director that I would no longer be a member.

Why? Because it was costing me energy. 

As a member of the Parent Committee, I was reviewing school policy documents and fielding questions about school policies from fellow parents. While the time commitment wasn't huge, I knew it would be more than I could comfortably handle this school year, especially considering that I need to plan for an upcoming move back to the United States. I'm glad I was able to help out on the committee for one school year, but now I'm happy to let someone else take a turn.

Last spring, I took my son to physiotherapy sessions after school once a week. In early September, I had to tell his physiotherapist that we would be quitting.

Why? Because it was costing both my son and me energy. 

The appointments were right after school, and my son was often tired. I would sit in on the sessions, and the physiotherapist would give me tips on exercises to try at home and toys to purchase that would promote my son's development. While she had nothing but good ideas, I was struggling to implement them at home. We have about 3-4 hours from the time we get home from school until my son goes to bed, and a lot of that time goes towards after-school down-time (because my son and I both need it), a walk or two outside (because my son needs it), dinner, and his bedtime routine. Any extra time usually goes towards working on language and fine-motor skills and having unscheduled let's-be-silly-together time, leaving little time for the physiotherapist's ideas. I'd then go to the physiotherapy appointments with a lot of guilt, which was eating into brain space that could have gone to something more productive.

And, yet another "no": One recent morning while my son was at school, I was sitting in a lobby that I frequent near his school, writing a blog post. A mom of one of his classmates approached me to chat. I said a quick "hello, how are you?" and then said I needed to get some more work done before picking up my son.

Why? Because I knew that chatting at that moment would cost me energy, whereas writing would give me energy.

Did I feel kind of bad saying "no" to these people?

Yes, I did. I genuinely like the director of my son's school and didn't like that I was putting her in the position of having to find someone else to sit on the Parent Committee. And I felt bad quitting our afternoon physiotherapy sessions because the director had put in time and effort to help set those up for my family, and because the physiotherapist was quite good and would now potentially need to fill our therapy spot. And I felt bad saying "no" to a chat with a fellow mom of a child with special-needs, because I know what it's like to be new to a school and new to the special-needs journey.

But who needs my time and energy more—them, or my 4-year-old son with cerebral palsy?

Of course the answer is my son.

If you've ever spent much time around a child with significant special needs, you know that taking care of them can take a lot of energy.

In my case, there's the physical work of carrying my son up and down the steep Dutch stairs in our house and of supporting him on walks when he gets too tired and his balance is off.

There's the mental work of trying to understand what he's trying to communicate to me and of managing all of the administrative work regarding his care: setting up appointments, filing health insurance claims, emailing therapists, applying for support...

There's the emotional work of processing difficult news and of dealing with each seizure as it comes.

I'm not saying all of this to complain.

I'm just saying that, as a parent of a child with special needs, I've learned that it's really important for me to preserve energy when I can, to say "no" when I can to things that cost me energy so that I have sufficient energy to give to my son. 

And, for this same reason, it's really important for me to prioritize (when I can) things that give me energy, like writing. And sleeping. And exercise.

I'm by no means perfect at this (see: exercise; see also: writing and sleeping). 

But, I'm trying.

***

What are some things that you've said "no" to recently? I'd love to hear your answer in the comments section below!

Setting Up Your Home for the Picture Exchange Communication System (PECS)

My 4-year-old son has cerebral palsy and struggles with communication. My husband and I and our son's therapy team have tried encouraging him to communicate via a variety of methods—speaking, using American Sign Language, and selecting pictures on an iPad—but ultimately the method that we've found works best for him right now is the Picture Exchange Communication System (PECS).

The idea behind PECS is simple: When a child wants something, he gives a picture of that item to someone, who in turn gives him that item.

My son's speech therapist did some initial PECS training with him at school back in the early spring, and then in April, she visited my family's home to show my husband and me how to further train him at home. (She'd continue training him at school as well.)

At that home session, we did PECS trials during snack time. I prepared a plate with small pieces of apple on one side and small pieces of cookie on the other. 

His speech therapist held the plate within my son's sight but out of his reach, and then presented him with 2 picture cards: one of apple and one of cookie.

If he gave the speech therapist the apple card, he was presented with the side of the plate containing apple, thus encouraging him to take a piece of apple. If he gave her the cookie card, he was presented with the side of the plate containing cookie.

My husband and I continued using the communication book at snack time every day, expanding to include pictures of a wider variety of snack items (but only 2 in a given PECS trial). That went reasonably well. But I was having difficulty figuring out how to branch out to use PECS in other parts of our lives.

In more advanced stages of PECS, the child goes to the book himself, pulls off a picture card, and then goes and finds a "communication partner" to give the picture card to. My big question was: How would my son be able to independently pull the picture cards off the communication book? Doing so would require using his non-dominant, left hand to stabilize the book and his right hand to pull the card off. Using his left hand in this way is difficult because of his cerebral palsy, so I wanted to find a way to eliminate this step, i.e., this barrier to his ability to communicate. I decided we needed a communication board mounted to a wall. Then my son would need only to pull a picture card off with his right hand, without needing to use his left hand at all. 

I had remembered seeing cheap desk mats in a local store that I thought would make good communications boards:

front of desk mat

back of desk mat

Each desk mat is basically a piece of cardboard and a paper insert of an image from the movie Cars, in a sleeve made of clear plastic on one side and black vinyl on the other. 

I purchased one of these mats. It was larger than I needed it to be, so I cut one side off with scissors. I then made some measurements on the vinyl side of the mat with a ruler and a pencil and stuck down 6 strips of adhesive-backed hook-and-loop fastener (e.g., VELCRO®). I affixed the other side of the board to a wall (actually, a window) in a central location of our first floor using double-sided foam tape.

Next, I created picture cards for items that interest my son and/or would be useful for him to ask for, like his toy train, animal figurines, potty, and apple. Most of the pictures came from the Pics for PECS® Version 14 CD, but some are photographs I took. I printed out all of the images at home, laminated them, and put a small piece of adhesive-backed hook-and-loop fastener on the back of each one. Then I attached them to the board.

I soon learned that in order to effectively teach my son how to use PECS, I needed not only to introduce a communication board to him but also to reorganize his toys. Let me illustrate with an example.

Sometimes my son reaches for a container of toys that is too high for him and then looks at me. This is a good opportunity for me to teach him a better way of communicating that he wants those toys. For example, I can lead him to his communication board, show him the picture card of the toys he wants, and hold out my hand to encourage him to give me that card.

But in order to lead him to the correct picture card, I need to know exactly what he wants; i.e., any container of toys that he reaches for needs to have only one type of toy in it. That way, it's clear to me what he wants, and I can lead him to the correct picture card. After some reorganization, his toys are now organized by category—e.g., "cars and trucks," "blocks," "animals," and "balls."

My son now freely goes to his communication board and, if he wants something badly enough, will come find me in another room and hand me the picture card of interest. These are his favorite picture cards:

In fact, he was requesting to go outside and watch videos so much that I'm now limiting his access to these 2 cards. Per his speech therapist's advice, I put these cards on his communication board only at times when I'm able to take him outside or when I'm okay with him watching a short video. That way, I'm not having to say "no" in his early attempts at using PECS, which could potentially discourage him from making further attempts. Saying "no" will come in a later phase of PECS training. (By the way, if you're training your child to use PECS, I highly recommend purchasing The PECS Training Manual, which discusses in detail how to train your child in each of the 6 phases of PECS.)

After my son became more adept at using his communication board downstairs, we expanded his PECS usage to other areas of our home. For example, I created another communication board and placed it at the top of our stairs. Now, when my son wants to go downstairs—which he often does since there's more to do down there—he can hand me the "go downstairs" card.

our PECS set-up upstairs

close-up of our "go downstairs" PECS card

We were running into a recurring problem at meal time or snack time where my son, strapped into his high chair, sometimes wanted something but I couldn't figure out what, making him very upset. For times like these, I now give him his PECS communication book open to a "menu" of available food options, which has helped.

our "menu"

We've also branched out to using PECS outside of our home, which I'll write about in a separate post.

I hope this post gives you some helpful ideas for how to set up your own home for PECS. If you have any additional ideas, please leave them in the comments section below!

Disclaimer: I am not a speech therapist, and I was not paid to write this post. I just wanted to share some ideas that have been working for my family as I train my son to use PECS. 

Back to School and Reminiscing About Summer

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To be honest, I was somewhat dreading this summer. When my son is in school, it's easier for me to take care of myself and to be productive—make appointments, get some of my freelance medical writing and editing work done, and maybe even do some personal writing. When he's out of school, unless I can find a babysitter, I'm typically his full-time (morning to evening) caregiver. This can be pretty hands-on and exhausting considering that he's young (just turned 4) and has cerebral palsy. As of the week before summer break started, I wasn't yet sure I'd have child care.

Our summer turned out to be nice, though.

First of all, I did end up finding child care. It was somewhat sporadic, but I took what I could get and that certainly helped my sanity.

The week after school let out, I bought my son a 1-year pass to our local Monkey Town, which if you're not familiar, is an indoor playground. We spent many an afternoon running around together in Monkey Town, playing with colored balls, and going down slides. He even climbed up one, which I was super-impressed by. It was only about 4-5 feet long, but still.

We also went on many leisurely walks—to a park near our house, for example, where we watched the ducks and played at a playground.

We had fun playing in the rain one day.

At home, we played with trains and read books.

And at the end of July, we flew to Munich, Germany. (As a side note, I recently wrote a post on tips for flying with your disabled child.) We spent a week there with my parents and brother, and had fun visiting the Neuschwanstein Castle...

being carried by Grandpa

...and the Deutsches Museum (of science and technology).

pushing a button to make the hot air balloon go up

building a track with Daddy

Other nice things about this summer:

1. Our mornings were usually relaxed. There was no morning get-ready-for-school rush or travel back and forth to school.
2. We had a 6-week break from all therapies: physical, occupational, and speech. While I appreciate the advice I get from my son's therapists on how to help him at home, it can sometimes feel overwhelming, so it was nice to have a break from that. I'm sure my son was also happy to have a break from therapy. It's hard work!
3. No therapy over the summer meant fewer therapy bills to pay!
4. This is the first summer where I've really gotten to just enjoy my son. He was born 12 weeks prematurely, and his first full summer I spent taking him to lots of doctor and therapy appointments and fiercely protecting him from respiratory illnesses (because with his prematurity came chronic lung disease, which put him at increased risk of respiratory infection and rehospitalization). His second full summer was right after we moved to the Netherlands, so we were busy settling in. His third full summer, we moved to a different house in our town. Finally, this summer I was able to focus more fully on Oliver—on playing with him and helping him grow.

So, all in all, we had a nice summer. School started back up 2 weeks ago, and we're getting back into the groove.

riding the train home on his 1st day of school

I hope you had a lovely summer, too, and if you have kids, I wish them all the best in this new school year.

Tips on Flying With Your Disabled Child

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"Chance favors the prepared mind."

This is one of my favorite quotes. It's by scientist Louis Pasteur, and it's especially true when it comes to flying with your disabled child: The more prepared you are, the better chance you have of a smooth experience.

My 4-year-old son, who has cerebral palsy, first flew on a commercial airline at 20 months old, when my family moved from the United States to the Netherlands. In the 2 years since then, we've flown to the United States twice, to London once, and just a few weeks ago, to Munich, Germany. With several flights now under my belt, I'd like to share with you my tips for flying with a disabled child.

One Week Before Departure

© Feverpitched | Dreamstime

1.) Take inventory of your child's daily and emergency medications. 

Do you have enough to last the whole trip, plus a few extra days just in case? Also, is the expiration date on all of the meds at least a few days after you're scheduled to get back? If the answer to either of these is "no," then now would be a good time to order more medication. 

Are any of the medications liquid? If so, then when you get the medication, I suggest keeping the prescription bottle or box, with the label intact, to take in your carry-on as proof of your child's need for that medication. (The same goes for prescribed liquid nutrition.) You might also want to bring medical records indicating that your child takes that medication. Having brought both, I've never had a problem flying with my son's liquid epilepsy medication. I've only been asked for proof once, but I sure was glad I had it.

2.) Gather all medical documents that could be needed in case of emergency while on the trip. 

My son has food allergies, epilepsy, and hydrocephalus, all of which have the potential to land him in an emergency room. (The latter two, in fact, have.) I have a folder that has 4 clear pockets, which I use to separately store relevant allergy records, diet records, epilepsy records, and reports on brain scans. In the back, it has a sturdy zipper bag where I keep a CD of my son's brain scans. 

our medical records folder for travel, purchased at HEMA

To be honest, it took me some time to gather medical documents, figure out which ones I really needed to bring, and even get a few missing ones from his pediatrician's office. But the good thing is, I only needed to prepare this folder once, and I've now used it for multiple trips. I may need to update it periodically, but the bulk of the work has already been done.

3.) Go to the airline's website and check out their policies on bringing medical equipment on board.

If your child has special medical equipment, it's a good idea to check out the website of the airline you'll be flying to see what their policy is on flying with medical equipment. What can you take on board? What must you check at the gate?

My son has been wearing ankle-foot orthoses for the past 2 years. These have never been a problem for us. In fact, he's always been allowed to keep both his AFOs and shoes on when going through security.

A Few Days Before Departure

© Paul Herbert | Dreamstime

1.) Print out any itineraries, reservations, and directions to any important places you'll need to get to soon after arriving at your destination.

This includes the flight itinerary, reservations for accommodations and/or a rental car, and directions to your accommodations and perhaps even a grocery store. I know from experience that it's a good idea to have print-outs of these things just in case you get to your destination and the internet isn't working. 

My son is allergic to nuts, peanuts, and sesame, which makes eating out a not-so-easy option for us. When my family went to London back in February, my plan for our first night there was to cook dinner in the apartment we'd be renting: We'd arrive at the apartment in the afternoon, search online for a nearby grocery store, and walk to the grocery store to pick up ingredients for dinner. 

Well, due to a long line for customs at the airport in London and then a delayed bus trip due to traffic, we ended up getting to the apartment much later than expected. By the time we got there, it was practically dinner time, and we soon discovered that the wifi in the apartment wasn't working. We had only a vague idea of where grocery stores and restaurants might be, so we ended up walking around until we found something and, in the meantime, eating what few snacks we had left. This was stressful. Thankfully, we found a mini-mart, and then a McDonald's that had food my son could safely eat.

It worked out okay in the end, but I'd rather not go through the unnecessary stress again. Before we flew to Munich this summer, I made sure to print out directions to a grocery store close to where we'd be staying.

2.) Plan meals and snacks.

If your child has dietary restrictions and you'll be on a long flight that serves meals, you might need to order a special meal—a dairy-free one, for example—from the airline. Depending on your airline, you may be able to place the order online, or you may need to call. In my experience, I've needed to place an order at least 24 hours in advance, but be sure to check the website of the airline you'll be flying for their policy on special meals.

Options of special meals will be limited, so you may need to bring your child's meal instead. That's what I do for my son. I've brought things like jars of baked beans, a grilled cheese sandwich I prepared in advance, chips, raisins, and bananas. It's always a good idea to bring more food than you think you'll need, including snacks.

If your child has a peanut allergy, sometimes you can notify the airline of this in advance via their website. I've done this prior to 2 international flights on Delta. However, while I appreciate that Delta made it easy for me to notify them of my son's peanut allergy, in practice it meant that after we boarded the plane, multiple flight attendants approached us and asked us questions about his peanut allergy. On the one hand, I understand their need to know what, if anything, they need to do to help prevent an allergic reaction, but on the other hand, the questions felt invasive and awkward since we were already seated on the plane and other passengers could hear us.

My husband and I no longer notify the airline of our son's peanut allergy. We simply seat our son in between the two of us; wipe down our seats, trays, and the window with baby wipes or antibacterial wipes; and eat only foods that are free of peanuts, nuts, and sesame. For us, these steps are sufficient.

3.) If you're going to a foreign country, look up that country's phone number for medical emergencies.

In other words, look up their version of the U.S.'s "911." Write it down in a place you'll remember it, or save it as a contact on your cell phone.

The Day Before Departure

© Francesco Scatena | Dreamstime

1.) Check in online for your flight, and print your boarding passes.

I highly recommend that you check in online the day before departure rather than waiting until you get to the airport. Last Christmas break my family had a bad experience: 

We were flying from the Netherlands to the United States. In the days leading up to the trip, I was frantically trying to sort out an issue concerning my family's emergency anti-seizure plan for my son, and checking in online didn't seem like a top priority. And so I didn't do it. (This was my fault.)

We got to the airport not quite 3 hours early and stood in a long, slow-moving line at the airline check-in desk. When we finally got to the desk, the lady helping us was able to check my husband and son in but not me. She said there was a problem with my ticket and that I needed to call Expedia, where I had purchased the tickets.

Long story short(er): Expedia had accidentally issued 2 tickets in my husband's name and none in mine. They were very reluctant to admit that they had made a mistake, and they didn't seem to know how to fix it. It took 11 hours (!) of me and a kind—and patient!—airport staff member being on and off the phone with Expedia before Expedia finally agreed to put my family up in a hotel near the airport for the night and get us a flight to the U.S. for the next day.

The moral of the story is: check in online the day before your flight. That way, if there are any problems with your tickets, you'll hopefully be able to sort them out well in advance of your flight.

And:

DO NOT EVER PURCHASE TICKETS THROUGH EXPEDIA!!!

2.) Pack your carry-on bag.

Items to include in your carry-on:

• All medication (If your checked luggage gets lost, you'll rest assured that your child will still be able to get his/her medication.)
• Proof of the need for any liquid medications
• Any medical documents that might be needed in case of emergency
• Any medical equipment your child needs on board
• A child safety seat or harness for your child to use on board—e.g., an FAA-approved car seat or the FAA-approved CARES safety harness (Please note: The image below is an Amazon affiliate link, meaning that if you purchase the CARES safety harness via this link, I will receive a small percentage of the sales.)
• Any device or pictures that your child needs in order to communicate
• Identification—e.g., passport, driver's license, and/or residence permit card
• Health insurance card
• Print-outs of itineraries, reservations, and directions
• Diapers and wipes, if your child uses them
• Sanitizing wipes to wipe down arm rests and pull-down food trays on the plane
• Hand sanitizer (travel size)
• Snacks and/or meals—make sure you pack extra!
• Utensils and cups that your child can use (The disposable ones typically offered on flights don't work well for my child; they might not work for yours, either.)
• Extra clothes for your child—and for you! At the very least, I suggest bringing a shirt for yourself in case of spills.
• Items that calm and/or entertain your child. Books, a coloring book, markers, an iPad, headphones, small wrapped presents (e.g., Matchbox car, yo-yo, animal figurine, small sensory ball, etc.)
• Items that calm and/or entertain you!

Write a list of items you'll need to pack the day of the trip—e.g., toothbrushes.

The Day of Departure

© Daniel Jędzura | Dreamstime

1.) Pack any last-minute items.

This will include items needed the morning of the flight, such as liquid medications, toothbrushes and toothpaste, etc.

2.) Get to the airport plenty early. 

A general rule of thumb is to get to the airport at least 2 hours prior to departure for a domestic flight, or at least 3 hours for an international flight. This is a good idea for anyone, but especially for families of children with special needs. It can sometimes take longer to go through security when you have liquid medications, liquid nutrition, and/or medical equipment that the security staff needs to assess the safety of.

In my experience, I've had to open a bottle of liquid nutrition once at security for it to be tested. (I threw that one away afterwards; thankfully, I had extra bottles on hand.) As for liquid medications, those have always gone through the x-ray machine, and sometimes they've also undergone additional testing afterwards (e.g., using a special hand wand).

As I mentioned earlier, we've never had a problem going through security with my son's AFOs. But if you have any medical equipment, it's always a good idea to be prepared for the possibility of the security check taking longer, as some medical equipment may need to be checked by hand before, or instead of, going through a scanner.

Also, you want to make sure you allow time to use the bathroom before boarding; eat, if necessary; and further mentally prepare your child for the flight, if necessary.

3.) Prepare your child for a potential pat-down at security.

My son is unable to do the pose that's required in the full-body scanner: hands above head, feet spread slightly. So instead, he walks through the scanner with my husband or me, without being scanned. Sometimes that's all he's had to do, but there were a couple of times when he was patted down by a security staff member. Right before the pat-down, I knelt down in front of him and said something like, "This man is going to touch you, but it's going to be okay." Thankfully, he hasn't had a problem with it.

You know your child best, so do whatever feels right to you in terms of preparing your child for a potential pat-down.

Additional things to consider

Some airports have a designated area where services are provided for disabled people. I know this is the case at the Amsterdam Schiphol Airport. You might want to check your airport's website in advance to see if it has such an area and/or special services for people with disabilities.

Families with young children can often board first. If your child is older but would benefit from early boarding, you could always ask the flight attendants at the departure gate for your flight.

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I hope these tips will help your trip with your disabled child go smoothly. You won't be able to plan everything, though, of course. Sometimes you'll just have to go with the flow.

my husband and son on our way home from Munich

Do you have additional tips on traveling with a disabled child? If so, please share them in the comments below!