When is it okay to ask about someone's disability?

In honor of Cerebral Palsy Awareness Month, I'd like to share a little bit about my son's cerebral palsy and what it's like as a parent to field questions about it.

I met up with a relatively new friend for coffee a while back. She already knew that my 3-year-old son has cerebral palsy and that he recently started attending a special preschool, but she didn't know many details about him. She was curious and started to ask questions.

Would he have cerebral palsy forever? Would he be able to drive a car someday?

Then she backtracked, with a concerned look on her face. "I hope you don't mind that I'm asking these questions."

"Oh, no, I don't mind," I said, because the truth is, I didn't. I told her that yes, he'd have cerebral palsy forever (there is no cure) but that he would continue to gain new skills.

For example, he's currently learning to walk more steadily and to go up and down stairs. His cerebral palsy is in the mild-to-moderate range and is expected to stay in that range, which for him might mean that he'll master the stairs but will always need to hold onto a handrail.

As for whether or not he'll be able to drive someday, to be honest I don't know. What I do know is that I want to teach him how to take public transportation so that when he's more independent, he'll have that as a viable option.

He’s already learning, in fact.

Oliver on a train

Oliver at an elevator at a train station

The conversation with my friend got me thinking about when it’s okay to ask questions about someone's disability and when it’s not.

For me, personally, the answer is simple: Establish an emotional connection with me first, and then ask your question. 

If you’re a stranger on a train and the first thing you say to me is, “Is your son ill? He's far too old to be riding in a stroller," I’m not going to be open to talking with you. 

(This really happened. And my son was wearing visible ankle-foot orthoses, a.k.a. braces or splints, at the time, so it should have been obvious why he might need a stroller, without questions asked.)

If you're a friend or family member, though, or even a stranger who's made an effort to get to know Oliver and me a bit, and you ask about Oliver's disabilities with kindness, then I'm often happy to answer you. I like the idea of spreading awareness about disabilities and of helping people get to know Oliver a little better.

And when I'd rather not answer—because sometimes I need a break from thinking about his developmental delays and special needs and so forth, which often weigh so heavily on my mind—then I realize I can politely say, "I'd prefer not to talk about that right now."

(My poor mom has probably gotten this answer more times than she'd like!) 

Of course, I'm writing all of this from the perspective of a parent of a child with disabilities rather than a person with disabilities herself. I'd love to hear from those of you who have disabilities and from other parents of children with disabilities: 

When, if ever, is it okay for someone to ask you about your disability or your child's disability? 

Please answer in the comments below!

The playground blues

It was a sunny day and reasonably warm outside—the first such day after a cold, wet winter. I had just picked Oliver up from preschool and decided we’d stop at a nearby playground before heading home. As usual, Oliver headed straight for the set of 3 “bicycles” that go in a circle when pedaled (a.k.a. the spinny bicycle thingy).

Oliver at the spinny bicycle thingy, on a less warm day

He especially likes to stand in front of the handle bars and push them around and around. That’s often perfectly fine with me, but it can become a problem when other kids want to join in and use the equipment as intended.

Since it was such a beautiful day, the playground quickly filled up with other children. A friend of Oliver’s from preschool approached the spinny bicycle thingy and got on one of the seats. I picked Oliver up and tried putting him on one of the other seats. As a result of his cerebral palsy, he doesn’t yet have the strength to pedal the bicycle into action, but his balance is good enough that he can stay on if another kid pedals at a not-too-fast pace.

He made it clear to me, though, that he did NOT want to be on the seat, so I took him back off and asked his friend if she minded riding backwards while Oliver pushed. That seemed okay with her, so they played well like that for a bit as I stood nearby. 

After a while, though, the equipment got to spinning too fast for Oliver, and he looked like he was about to stumble. I stepped in and pulled him to safety.

Later in our playground time, after I had convinced Oliver to play on some other pieces of equipment, we were back at the spinny bicycle thingy, with Oliver once again walking and pushing the equipment around and around.

An older kid climbed onto one of the seats. He said, “I want to go fast!” and immediately started to pedal. I quickly snatched Oliver up and moved him out of the way. Shortly thereafter, some other kids approached, and I decided it was time for Oliver to let them have a turn and move onto something else.

I felt a twinge of sadness for Oliver, though. As these scenarios illustrate, it can be difficult for him to play at the playground with other kids, especially when their gross motor skills are more advanced than his. 

I also felt a twinge of sadness for myself. There were several moms of other kids in Oliver’s class who were sitting on park benches, relaxing and chatting while their kids played. For me, this wasn’t an option. Oliver needs help getting onto equipment, and he needs me to stay nearby for safety reasons. When Oliver falls, he can’t get back up very quickly, which can make for a dangerous situation if, say, he’s fallen in front of the spinny bicycle thingy and another kid starts pedaling. 

On the flip side, I feel immense pride. Just a few short months ago, Oliver would have been tethered to my hand the whole time we were at the playground, too unsure of his balance to let go.

Now, though he still needs me close by, I can sometimes let him wander off a little ways. And when I do, you should just hear that boy’s giggles of pure glee.

That's what I call some beautiful progress.

Baby Signing Time—not just for babies!

As I’ve mentioned before, my 3.5-year-old son Oliver has spastic quadriplegic cerebral palsy and some difficulty with communication. He isn’t completely nonverbal, but his speech is limited to just a few words—“go,” “yeah,” and occasionally “no” and “ma”—so we’ve tried encouraging additional means of communication, particularly sign language.

Back in the fall, Oliver’s speech therapist lent us four Baby Signing Time DVDs—to use indefinitely since Oliver is her only patient who currently needs them.

I couldn’t say enough positive things about them.

The DVDs feature Emmy-nominated host Rachel Coleman, a singer who has a daughter who’s deaf. During most of the show time, Rachel wears a yellow jacket with orange elbow pads, and has blue tape wrapped around the end of each index finger and thumb, and orange tape around her other fingers. This color coding makes it easy to see the position of her elbows, fingers, and thumbs when she introduces new signs.

Each DVD introduces approximately 25 new signs in American Sign Language and consists of several chapters. For example, the "Here I Go" DVD introduces 24 ASL signs and has 8 chapters, including "One Shoe," "Here I Go," and "I Wash My Hands." In the chapter "One Shoe," Rachel begins by showing the sign for shoe, explaining "Tap your fists together, like a pair of shoes." Then she repeats the sign and the word "shoes," and she smiles and says "Your turn." The background is plain white, except for a cartoon image labeled with the word "shoes" in the upper right, making it easy to focus on the sign and its meaning.

Then the camera shifts to a young child making the sign for "shoes," and then to another, and yet another—to a total of 7 kids. I think it's fantastic that the producer chose to do this, for several reasons: (1) The repetition is helpful for learning the signs. (2) Seeing other children make a sign can be a good motivator for your child to try it. (3) The way young children make signs is different from the way adults make them. Young children are less precise in the positioning of their elbows, fingers, and thumbs. By showing many young children approximating the same sign, the DVD highlights the variability in the way the sign can look, thus showing parents what it might look like when their child tries it.

Throughout each chapter there is a song. In the "One Shoe" chapter, while Rachel and the children are showing the sign for "shoe," the song is just background music. Then Rachel sings a simple tune that incorporates the sign, providing further repetition and opportunity for learning. She repeats this framework for each new sign: introducing a sign, having young children make the sign, and then incorporating the sign into the chapter's song, with some playful animation sprinkled in. In the "One Shoe" chapter, in addition to the sign for "shoe" she introduces signs for "socks," "hat," and "coat" and, at the end, incorporates all four signs into the chapter's song, as a review.

These DVDs are approved not only by me, a parent. My son absolutely LOVES them.

Oliver watching Baby Signing Time

And, importantly, he's slowly learning new signs from them. In his case, my husband and I have found that the DVDs must be supplemented with us showing Oliver the signs and helping him at first to make them, by placing our hands over his and doing the motions for him. I suspect that this is because of Oliver's difficulty with motor planning, meaning that as a consequence of his cerebral palsy, his brain has difficulty telling his hands how to move.

Thankfully, with practice, he's learned to make a variety of signs, including those for "more," "all done," "wash hands," and (most importantly in his mind) "cookie."

Baby Signing Time DVDs can be purchased through the Signing Time website, and rented or purchased through Amazon. I'm in no way affiliated with either of these websites; I'm just wanting to share a resource that has been helpful for my family.

Bills, bills, reimbursements (???), and bills

© Ocusfocus | Dreamstime.com

Lately I’ve been trying to catch up on some financial tasks related to healthcare for my 3.5-year-old son, Oliver, who has cerebral palsy, and I’m struck by how much paper- and e-work caring for a special-needs child can involve. Last week alone, I…

• Emailed a new (to Oliver) physical therapist (because our current one isn’t covered by our health insurance), asking when she’s available to start
• Paid a bill for speech therapy
• Emailed our health insurance company, asking for an update on a request for reimbursement for a speech therapy evaluation
• Compared documents detailing reimbursements expected from our insurance company against our bank records, to verify that we did in fact receive those reimbursements
• Prepared an Excel file of Oliver’s medical expenses in 2016 that were not reimbursed by insurance, for tax-return–filing (and, hopefully, -saving) purposes
• Researched how to get reimbursed by travel insurance for Oliver’s hospitalization abroad back in late December 2015
• Worked on gathering documents that I’ll need in order to file a medical claim for that hospitalization to the travel insurance company (bills, plus documentation of what our health insurance company has already paid)
• Rummaged through a bunch of papers looking for a bill that I’ll probably need to send to that travel insurance company, realized I don’t have it, and then emailed our health insurance company asking if they can send it to me
• Contemplated sending a “Physician Statement Form,” which is necessary for reimbursement from that travel insurance company, to a physician who saw Oliver during that hospitalization back in December 2015, and decided that was going to be too much work for now, I’ll do that later
• Thought about making a list of documents needed for an application for “dubbele kinderbijslag” (double the usual quarterly child benefit available to children in Holland, available by application for those with significant enough disabilities), and then looking for those documents and scanning them into my computer, but decided that was going to be too much work for now, too, I’ll do that later
• Considered making a list of documents to send to our accountant, including a list of Oliver’s unreimbursed medical expenses in 2016, but decided that was also going to be too much work for now, I’ll do that later (I’m sensing a theme here…)
• Filed therapy bills and various other medical documents into Oliver’s box of medical files. (Yes, he has his own box of medical files. And it’s just about full.)

Oliver's medical files

I’m not saying all of this to brag about myself. 

(This is a larger-than-typical volume of financial work for me, to be honest, spurred on in part by the tax-return–filing season. Plus, my mom and brother have been in town, so I had lots of childcare last week—and thus more “free” time.)

I just wanted to highlight the types of things we parents of special-needs children have to do in order to help keep our families as financially afloat as possible.

And to remind us that basically, we’re awesome.

How do I discipline my special-needs child

I had a set of experiences recently that made me think hard about how I discipline my 3.5-year-old son, Oliver, who has cerebral palsy and speaks only a handful of words.

His preschool recently had an event where parents could come to the school for 45 minutes late one morning and learn about technology used in the classroom. There were several stations set up: a couple of tables with iPads, where the students could take photos of themselves; an area on the floor where students could play with a Code-a-pillar^TM; and another area on the floor, out in the lobby, where students could play with a Bee-Bot.

Code-a-pillar (photo from Fisher Price)

Bee-Bot (photo from Bee-Bot.us)

My son chose to go to the iPad station first. I fiddled with an iPad for a couple of minutes, trying unsuccessfully to access the camera program. A teaching assistant came over to help us, but by that point, my son was restless and fussing.

 

“He’s been fine all morning. I don’t know what’s wrong,” she said, concerned.

"I think he needs a nap today," I said.

Oliver and I moved on to the front of the room, where the head teacher was kneeling on the floor with the Code-a-pillar^TM. We sat down, and more fussing ensued. I tried to calm Oliver down by placing him on my lap, but as I recall, he continued to fuss.

The teacher asked individual students to add a new segment of “caterpillar thorax" to the back of the Code-a-pillar. When it was Oliver’s turn, she helped him connect the new segment and then asked him to press the button on the Code-a-pillar to make it “go.” He enjoyed this and remained engaged with the toy for a few minutes, even following it around a bit before returning to me and fussing some more.

“Guh,” he said to me. That means he wants to “go,” i.e., walk.

We walked out into the lobby and, along with several other kids and their parents, sat down in front of the BeeBot toy. His personal aide began to demonstrate how it works.

That’s when Oliver’s crankiness escalated.

As I held him, he arched his back and screamed. He bent backwards with such force that he almost hit his head on the floor and I had to struggle to hold onto him.

This was embarrassing and a part of me wanted to leave, but school wasn’t yet finished for the day. I was thinking What should I do? when his aide turned to me and said kindly, “Michelle, you can take him over to the library to help him calm down.”

I did that, and sat down with him and tried to read him a book. The sitting-down part seemed to help, but he wanted nothing to do with the book and soon stood up and said “Guh.”

“Okay, fine, we’ll go.”

He was calmer now, so we walked hand-in-hand around an unoccupied area of the lobby for a bit before returning to the Bee-Bot. Yet again, he began to fuss and cry, and nothing I, nor the teaching assistant who was now there, did could make him happy.

Finally I decided we needed to just go home. I carried him to just outside of the classroom door to gather his things when he screamed at me and, in a fit of rage, yanked my glasses off of my face. It was at that moment that his teacher appeared.

I was embarrassed that she had probably just witnessed this awful moment, and without looking her in the eye, I said defeatedly, “We’re going home.”

“Let me help,” she said calmly. She bent down and faced Oliver, who was now standing on the floor, and said calmly, “Oliver, we need to put your coat on, and then you can go.” She helped him into his coat, and she asked me if I was okay.

I said “yes.” 

But we weren’t out of the school long before I was fighting back tears.

********

When I dropped Oliver off at school the next morning, his teacher asked to speak with me. Usually she and I will just have a little chat right outside the classroom, within easy hearing distance of other parents, but this time she led me upstairs to a private room and closed the door.

“What was going on with Oliver yesterday?” she asked, concerned. “We just don’t see that kind of behavior from him when you’re not at school.”

As much as I hate to admit it, this wasn’t the first time he had thrown a tantrum in front of me at school. He’s typically in a good mood at school drop-off and pick-up, but when I go to school for special events such as the recent parents’ morning, there’s a pattern of him acting out, I was beginning to recognize.

I speculated out loud whether maybe when Oliver sees me at these infrequent special events, he assumes it’s time to go home, since when he sees me at school, it usually is in fact time to go home. Or maybe he finds the events to be overwhelming, with all the people and the break from his routine.

His teacher agreed that these could be possibilities but also wondered out loud, “Does he act like that with you because he knows he can get away with it?”

This was a difficult question for me to hear, and I left the meeting feeling like a bad parent. Also, I felt angry with his teacher for insinuating that he was acting out with me not simply because I’m his mother but because I was doing something wrong. A part of me said it wasn’t her place to question how I deal with Oliver’s tantrums when they’re not affecting his learning at school. Plus, as a special-needs parent, didn’t I already have enough to worry about as it was?

But then I spent the next few days thinking a lot about Oliver’s tantrums and talking with my husband about them, and I came to realize (although I think I subconsciously already knew it) that we’re softies with him. 

And that we're that way in large part because of his special needs.

Oliver has difficulty using his left hand due to an early brain injury. My husband and I used to jokingly say, “He’s allowed to do anything he wants, as long as he does it with his left hand.”

Oliver’s had 6 surgeries, 7 if you count a major heart catheterization procedure that he had. After all he’s been through, we felt we couldn’t be strict with him.

A little over a year ago, it wasn’t clear how much language Oliver understood. How could we discipline a child who we weren’t sure understood what we were saying to him? I didn’t think we could.

Furthermore, until a few months ago, Oliver couldn’t walk without holding onto something (or someone, as he preferred), so we were used to constantly being near him and, since we were so physically close to him, to attending to most of his grievances, however small.

But now that his understanding of language and his gross motor skills have vastly improved, it’s time for my husband and me to change our approach to tantrums, and I’m now thankful, rather than angry, that Oliver’s teacher has brought this to our attention.

At home we’ve started focusing more on our reactions to Oliver’s tantrums as they come, and asking ourselves, “Can we ignore this one?”

This past weekend Oliver threw a tantrum when I carried him downstairs. He wanted to keep opening and closing doors upstairs, and now he stood at the bottom of the stairs crying and screaming. I had already calmly told him that we needed to be downstairs, and I was about to attend to him again when my husband quietly said to me, “I think we should just ignore this one.”

Of course, there are some tantrums that we can’t ignore. Since Oliver’s ability to communicate is limited, we must attend to any tantrum that doesn’t have a clear-cut reason. By trial and error, we have to figure out if he’s thirsty, hungry, tired, or in pain. It’s especially critical to know if he’s in pain since that can be a sign that his shunt for hydrocephalus is malfunctioning, which would require emergency surgery on his head.

It’s complex, figuring out how to discipline our special-needs child. 

But we’re working on it.