Posts Tagged ‘encopresis in special needs children’

Are You Smarter Than a Fourth Grader: what the other kids are asking about your special needs child

As I made my way to 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. 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 was 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.

Airing the dirty laundry

Attention: This post is slightly graphic, and kind of gross. If you don’t want to read about megacolon or related issues, stop here!

Still with me, you brave soul? Okay, well one of my worst fears was realized today. As you know from previous posts (My #2 Career) James suffers from encopresis/megacolon, and when I say “suffers” I mean with as much grace as he can muster considering the graceless subject. Just so we’re all on the same page here, James often goes 1-2 weeks without a bowel movement, even with large doses of laxative medications. I will spare you details (if you want them, go see my other post!) but you can imagine the pain and discomfort that come with biweekly B.M.s. In between these enormous B.M.s, as more poop builds up in the colon, it creates a blockage while also stretching out the colon. Some poop leaks around the blockage, resulting in what seem to be accidents, but are really incidents that James is unaware of until he, or more often we, smell or otherwise notice them. Add to that a special needs child who knows enough to be mortified but not enough to clean himself up or to assert himself enough to get to a bathroom quickly and a recipe is brewing. A gross one.

Again, I will spare you the details (though Christmas Eve 2009 will eventually be a post) but we have had dozens of “accidents,” leaks, and full blown disasters over the years while entertaining dinner guests, working with tutors, visiting with family, and especially when traveling to new places. My experience in dealing with these “situations” has grown considerably, and I consider myself somewhat of an expert on James’s colon adventures. I can tell from a facial expression or a slight shift in body language when I need to get James to a toilet, fast. Sometimes we go months without an accident, then a change in schedule, a house guest, or a trip will bring on 10+ accidents a day for a week.

Thankfully, miraculously, James has never had an accident at school. I was incredibly anxious about this through 2nd grade – plenty of children have had accidents at school, but not too many have had “accidents.” James already had such a hard time fitting in with his peers, and one misplaced B.M. could do some serious damage to his already-weak image.

I got to find that out firsthand today. Today marks the end of 5 clean years and the beginning of an anxiety renaissance, for me and for James. James went down in a spectacular explosion of flames, having the single worst accident I can remember since he was old enough to go to school. This is my understanding of how it all happened, though I am piecing it together from half a dozen sources. Try to read the story without wincing, feeling sick in your stomach for James, or at least wanting to help James run far, far away – I dare you.

The horrific incident went down during recess, outside, where lots of kids were available to notice. His para sent him to the bathroom to clean himself up. James tried valiantly to do just that, only the accident must have been much larger than usual. Much larger. How else did he end up with poop covering his hands, arms, legs, back, shirt, shorts, even his socks? In fact, James ended up with poop all over the boys bathroom toilet and floor, where more kids came in and witnessed his worst nightmare coming true. He was then taken back outside, away from everyone as the principal called me and asked me to come quickly.

I couldn’t have prepared myself for this no matter how many years I had agonized over it. Thankfully, I was with a friend when I got “the call” who generously accompanied me to school and watched the babies as I ventured inside, fresh change of clothing in hand. When I got to James, I could barely look at him – my heart hurt to see his sad little face. He looked so ashamed of himself, and I wanted to give him a big hug, but he was really pretty gross. James’s para indicated that a bathroom had already been shut down and that I could use it to change him while she guarded the door. We went in and I quickly realized it was much worse than I thought – the bathroom had already been through one cleaning, and I could see huge wet areas where poop had presumably been a few minutes before. I started to undress James, and with each layer that came off, more poop fell onto the floor, got onto his clothes, got onto my clothes – it was everywhere. I asked him, “Why, James, didn’t you go to the bathroom? Why didn’t you tell someone you needed to go once you started to have an accident? How did it get this bad?” James replied, “My tummy hurt too much to walk to the bathroom.” I felt so sad for James, all of his amazing effort and progress this year with the kids in his class, erased in one fell swoop. This sentiment was confirmed as I heard some boys from his class out in the hall talking to James’s para – “Why can’t we go in the bathroom? Is it because James is in there? James messed up the whole bathroom, didn’t he?” There was glee in their voices. If I hadn’t been up to my elbows… now that I look back, maybe I should’ve gone out there anyway.

About 30 minutes later James was “clean” and in new clothes I had picked up at TJ Maxx on my way over to school. He walked out of the bathroom and casually headed down the hall toward gym class, as if he were going to attend. His para raced after him to make sure the other kids didn’t see and taunt him, and to keep an eye on him while I spoke to the principal, guidance counselor, and teacher about what would happen next.

Though humor has been a very successful coping method for me, today there was nothing funny about the situation. I could barely keep it together as I asked, “How am I ever supposed to send James back to school here ever again?” Everyone kind of looked at each other. I wanted someone to protest, but they were all thinking along the same lines I was. I felt sick to my stomach. After 3 awesome years at this school James had shown academic progress in class but more importantly huge leaps and bounds socially, and they were all being wiped out before my eyes over something totally beyond his control.

“What if I talk to the class?” I asked. “Let me field the questions that James would otherwise have to deal with when he comes back to school.” The guidance counselor decided she would assess the students Thursday and I would come in Friday in the hopes that James could return Monday with less trauma, in the hopes that the two days at school and a weekend would bring some other incident that would be more interesting than James pooping his pants at recess and destroying the bathroom on the first floor.

I was sick about it all the way home, just totally overwhelmed. When we got back I put James in the shower and lathered him up with about a cup of liquid soap and left him there to soak. I tended to two very grumpy babies, whom I had neglected for the last 2 hours. I called my husband, mother and mother-in-law to talk to them about what had happened. I talked to James’s doctor and discussed a new course of action, aka different medication dosages. But I was calm. By the time we sat down to dinner, all of the children were being pleasant, eating their food, using their manners and listening to some soft music in the background. It was peaceful and enjoyable, which are not the words I often use to describe our family dinners. I think James was on his best behavior because he was unconsciously waiting to get “in trouble” for the fiasco at school, and he was confused as to why I wasn’t acting angry or upset with him. Without discussing it aloud and upsetting a perfectly good meal, I was letting James know that we were all on his team, and that this family was going to get him through the next steps in one piece, and that no matter how many more hundreds of accidents he has I will always go to bat for him.

So tomorrow James “is staying home to help me with his sister at the playground.” And Friday we “get to stay home to visit family coming in for the Central Park Challenge.” Perfectly logical reasons to skip school. And after a weekend full of races and confirmations and baseball games, James will have forgotten all about this mess.

But everyone else will not have forgotten, so I am working on what to say to James’s classmates. I want to tell them that everyone has dirty laundry.  Nobody is perfect and everyone has issues, problems, secrets. Some of us can’t hide our issues because we can’t control them. It is cruel to make someone feel bad, scared or sad over things they cannot control.

Sometimes it is liberating to air your dirty laundry, to let go of the anxiety that comes from keeping it all bottled up. Other times it’s even better to just throw it away. I aired my dirty laundry, but I threw James’s away.

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