One mother shares what the other kids in class are asking about your special needs child—and reveals how she handled answering them after her child experienced a very embarrassing incident at recess.
As I made my way to my son* James's school on Friday afternoon I tried to imagine what magic spell I could recite to his classmates to make them all forget about Wednesday's incident (description to follow). Do you ever wonder what other kids think about your special needs child? This is not actually something I dwell on often, but standing in front of 22 very curious faces I wondered what questions were about to come my way, and hoped that I would be able to answer them both honestly and appropriately (I really didn't want to say "poop" or "megacolon" in front of a bunch of fourth graders).
I started off by explaining why I was there—I told James's class that he didn't know I had come but that I was worried about sending James back to school after what happened on Wednesday and wanted to make sure it was safe for him to come back. I told the kids that I was concerned about what might be said to James and that I didn't want him to be made fun of for something that was outside of his control. I gave a brief explanation of James's disability and related medical issues that led to Wednesday's disaster, and also talked with them about James's past surgeries and his history with intestinal issues. Then, I opened up the floor for questions—regarding Wednesday or James in general. Here are just a few of the questions I was asked:
Q. What happened Wednesday? Why did James not know what to do?
A. James may not have been able to tell you, but as his mom I know what was going on inside of him. James had an extremely busy week with you guys—NDI performances, field day, field trips, testing—and because of his crazy schedule his medication didn't work properly, and James was not able to go to the bathroom for nearly 2 weeks [there was a collective gasp at this pronouncement, especially from the boys]. On Wednesday his body did not cooperate with him and James couldn't make it to a bathroom in time. He didn't know what to do because he was outside and far away from a bathroom.
Q. Is James upset at home?
A. Not really. Thankfully, James forgot about what happened by the time we got home—he forgets about things very quickly sometimes. I am hoping you will help him forget about it.
Q. Why does James make weird faces and tip his head sometimes?
A. James's brain works differently than yours or mine, and sometimes he is thinking about something and acting it out in his mind. You know how you can keep your thoughts secret from people if you want to? James can't do that sometimes.
Q. What kind of surgery did James have?
A. He has had a lot of surgeries—on his eyes, stomach, teeth, legs.
Q. Did it hurt when they did surgery?
A. No, because they gave him a shot that made him sleep through all of them, kind of like when you go to the dentist.
Q. Why does James spin in circles a lot?
A. Sometimes when it is really chaotic or loud James likes to spin in circles to deal with all of the noise. Other times he likes to spin because it feels good to him.
Q. I had that same kind of surgery and sometimes my eyes get tired and they go like "this."
A. That's what happens when James's eyes get tired, too.
Q. Why does James get mad when I say "good job"? Why does James get mad when I try to help him?
A. James may have not been able to tell you, but as his mom I am pretty sure that he isn't usually mad, even if he looks like he is. When James gets mad he is usually one of 3 things—scared, frustrated, or embarrassed. Sometimes when you say "good job," James is feeling frustrated or embarrassed that he can't do whatever you guys are doing—NDI, gym, math-as well as you, and he thinks you are teasing him or just feels upset that he can't do those things. He is embarrassed to have you help him because he wants to do it himself.
Q. What can we do to make him not feel embarrassed?
A. Act like you don't notice that he is not doing it the same as you—all he wants is to fit in with the group.
Q. Is it serious?
A. [After some clarification from the teacher:] As long as James takes his medicine and sees his doctors he should be just fine.
Q. Why does James make noises like "this"?
A. James sometimes doesn't realize he is making noises, and other times he can't help it. Sometimes when he is stressed out or excited he makes noises—the noises help calm him down. It is better if you just ignore them.
Q. Why does James cry at popping noises?
A. This is a very serious thing I want to address [I spoke to the whole class but everyone knew I was really talking to a handful of kids in the class]. I understand that there have been some popping incidents during lunch, where people are popping chip bags at James. This must stop. James's ears are shaped differently on the inside and popping noises scare him because they really hurt his head on the inside. They hurt James like he is being hit [I made some good eye contact here]. If James were given a million dollars inside of bubble wrap he would throw it in the garbage [there was a huge gasp from the class at this revelation] because popping is so horrible to him. We can't have balloons or anything else that might pop in our house because we don't want to hurt or scare him. When something pops near James it feels like he was hit in the head—that's how much it hurts. So if you are popping chip bags at James, it is the same as if you hit him. Popping is hitting.
Q. How can we help James? What can we do when he is upset?
A. You can help him by being his friend, and by acting like he is just one of the group. You can pretend not to notice the ways he is different from you, the noises he makes, or the "weird faces." Instead of asking what's wrong you can act like you don't know he's about to cry and let him recover by himself so that he doesn't feel embarrassed. You can protect him from other children at lunch and recess if he is having trouble understanding the rules to a game or if they are making fun of him for doing unusual things by inviting him to hang out with you.
Q. One time I fell off the stage and had an accident in front of everyone.
A. I bet you felt scared and embarrassed too. [Nod.] So you especially know how James felt last week at recess. [Nod.]
Q. Why couldn't James walk to the bathroom on Wednesday? Was he paralyzed?
A. He wasn't paralyzed but his insides kind of were. James couldn't get to the bathroom because his stomach hurt so badly he couldn't walk. You know how your insides hold everything inside for you so you have time to get to the bathroom without an accident? Sometimes James's body doesn't do that for him, and there is nothing he can do about it. Can you imagine how much it would hurt if you couldn't go to the bathroom for 2 weeks? [Lots of nods.]
Q. What can we do to help on Monday when he comes back?
[This was asked about 15 different times and ways, and I answered the same way with slight variations each time.]
A. The best thing you can do for James is to pretend like nothing ever happened, because James has already forgotten about it. All James needs to be happy is a bunch of good friends. James is not worried about coming back Monday because he doesn't know what happened is such a big deal anymore. I am worried as his mom that he will be made fun of, so I need your promise that you will not mention what happened on Wednesday and that you will tell a teacher if you hear anyone giving James a hard time, especially at lunch or recess. [A classroom full of thumbs up went into the air.]
It was 3:00 and almost every child still had their hand in the air though I had been answering questions for an hour. The minute the session was "closed" I was swarmed by children who were eager to touch my 8 month old, who I had brought along for the meeting. Children were touching his cheeks and holding his hands, while others were bringing up classwork and pictures to show me. I could barely get out of the room for them to pack up-I must admit, I felt like the popular kid (it was probably the baby) and I hoped that I could pass off some of my popularity onto James.
Yesterday I sent James to school with one change of clothes and no small amount of anxiety. I felt that my meeting with the children had gone well. The teachers and administration had been nothing short of supportive, amazing, kind, helpful, wonderful, and amazing (seriously, this does not even begin to do justice to how amazing they were). BUT, James had not "gone to the bathroom" since the incident. Even with the new meds. Ugh.
Despite my worrying, there were no calls during the day, and when I came to get him after school he looked relaxed and happy. The teachers said he had a great day and James came up to inform me that "Kasia was his best friend today." Other children said hi to the babies and all was well. I instantly felt about 10 pounds lighter.
It looks like I underestimated the kids. So, fourth graders everywhere but especially in class 318, please accept my apology for not giving you enough credit to take information and use it for good. I hope one of you gets to read this at some point a few years from now-no matter what else you have done up to that point, I hope that you will be able to find out what a difference you made in someone else's life. James may not have been able to tell you, but as his mom I am telling you how grateful we both are for your help, support, and kindness.
Michaela Searfoorce is the never-stay-at-home mother of 3 exceptional children ages 10, 2, and 8 months old. She and her husband live on the UWS in Manhattan. After finding schools, services, and activities for her special needs son the long and hard way, she decided to help connect others with the many available resources in the NYC area via her website Thefoorce.com. Though her degrees and career have been in music performance and education, she has found a new kind of fulfillment in motherhood and advocating for people with disabilities, especially her son.
*James is an amazing 10-year-old boy in a CTT class (4th grade when the above was written; now in 5th). His main diagnosis is a rare chromosome defect which has resulted in numerous medical issues, global developmental and physical delays, and labels such as PDD-NOS, Sensory Integration Dysfunction, and ADD. Despite multiple surgeries since birth and new challenges every year, James is generally a very happy, affectionate child and brings a smile to the faces of nearly everyone he meets.
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