Posts Tagged ‘sensory issues 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.

There are more balloon vendors in Central Park than Starbucks in Manhattan

June 1, 2011 1 comment

Let me start off by saying that most of the weekend was great – beautiful weather, lots of outdoor time, picnics with friends, sprinklers, sand, tired but happy kids – overall a lot of fun and time together as a family. But, as often is the case on Monday holidays, my husband went to work yesterday and I decided to adventure out again with the kids. After all, Saturday and Sunday had been so pleasant and I was feeling optimistic with the sunny warm weather.

Below are the two emails that I sent upon my return from Central Park on Monday.

To my husband:

Subject: There are more balloon vendors in Central Park than Starbucks in Manhattan

Finally back from our hellacious trip. Amazingly hellacious. I never want to see a balloon again. But we made it to Heckscher park come hell or high water and played for 20 minutes to make the surrounding hours of misery seem more worth it. And I got a good workout with both babies strapped on in 90 degree heat. And the kids are exhausted so bedtime should be quick and painless tonight.

How is your day going? I’m making taco salad for dinner.
Love you,
To the woman I was meeting for a day at the CP zoo and playground:
Subject: today
Good evening,
Things have finally calmed down around here and I wanted to send you a note before bed. I’m sorry about earlier – I don’t know what I was thinking bringing the kids into such ridiculous crowds, heat and chaos by myself today!
It was really hard to stay in one place for too long with all three kids – each of them wanted to get moving to a new section of zoo at a different time and they were hot and hungry to top it off. Then getting something quick to eat at the cafe turned into a noisy mess thanks to some screaming, tantruming kids at the table next to us. After James was on edge about all of the noise (with his hands over his ears the entire meal instead of eating anything), we kept running into balloon vendors on our way to the playground, several who approached us and tried to get us to take free balloons. James totally lost it by the 3rd vendor, and there were at least a dozen more on our windy trip through Central Park. It took over an hour to navigate a way from the zoo to Heckscher that didn’t involve balloons and by that time the kids (and I) were sweaty, stressed messes – James from the balloons and the rest of us from James’s terrified screaming. We played at Heckscher in the water for 20 minutes to cool down, calm down and for me to rest my back since I was carrying both babies – plus, I wanted my hours of heavy labor to result in something pleasant for the poor kids at that point. Of course afterward it took another hour to walk to CPW and hail a cab – on the way M found a little balloon and she and James fought about it all the way out of the park. So, meeting you at the next playground wasn’t even a remote possibility, though I would’ve liked to visit and catch up!
I spent the day alone – much of the trip very unpleasant though none of my kids were being “bad.” This may sound crazy to some of you, but I am actually glad I was by myself. Would it have been easier with my husband there for company, to help carry a kid or man children at the zoo or playground? Of course. Am I glad he was spared the stress of the “epic balloon frenzy?” You bet. Would it have been easier to seek help from the friends I was supposed to be hanging out with in the same park? Perhaps. Was I worried about offending my friends or making them uncomfortable with James’s behavior? Actually, no. By method of natural selection we tend not to have friends who are made easily uncomfortable by a disabled child. In fact, I was probably more likely to have offended them by leaving without any notice. But, as I always say, having kids is not just a way to be popular.
The truth is that James needed the smallest audience possible if we were to leave Central Park alive. Balloons, or anything that could potentially make a popping noise (bubble wrap, plastic bags, fireworks, bonfires), are the number one phobia on James’s rather extensive list. And they are number one by a landslide – in fact, this phobia seems to be getting worse as James gets older, though many other fears have gotten a lot better. Now I know some of you are probably wondering why I brought him to the zoo if there are so many freaking balloon vendors. I swear, I have never seen anything like it, and we go to the zoo all the time. Usually there are one or two guys at the south entrance of the zoo and one to the north – I know to move quickly while distracting James and my toddler, one from flipping out and one from wanting a balloon very much.
On Monday there were clusters of them, every 10 yards or so. Several of the balloon-wielding lunatics approached us despite my death stares (I guess I need to brush up on that) and offered us free ones, which just about killed my daughter every time I turned them down. In between vendors, there were all of the kids with balloons – squeezing them, hitting each other with them, wearing them, improperly holding them – James pointed each child out by crying, telling me loudly about the balloon crime taking place, or my personal favorite, yelling at the child holding the balloon to “get away from me with that balloon, you!” and then crying. Sometimes his scream would be so loud and sudden that he would scare one or both babies, and then they would join him in crying.
Two hours after the zoo and many, many, many windy paths later, I gave up and decided to get to a street, any street, and find a cab – there is truly no place like home. I felt so bad for my children that the day had so little fun in it for all of our effort, felt sorry for James, felt frustrated with James, felt exhausted and hot and sweaty, and felt no small amount of loathing toward those balloon-wielding, plotting, devious maniacs that seemed to be more present than Nuts for Nuts carts. This is of course when we walked by Heckscher playground, our original destination.
James perked up. “Oh, good, we found it,” he said tearily. My daughter was sleeping on my back. After a moment’s hesitation, I woke her up and sent her and James racing into the playground sprinklers. 20 minutes later, wet, dirty and happy, we headed for home.
When I heard James scream this time, I turned around just in time to see my daughter gleefully running down the path with, what else. It was a very small, squishy, half-deflated purple balloon that she had apparently picked up off the ground and in her effort to keep it she was squeezing it very hard, sending James into a total frenzy. But she wasn’t ready to give up her prize without a fight – ironically my daughter just loves balloons. I thought quickly about how to best diffuse the situation without one of the kids totally flipping out.
Thank goodness for vendors. Two ice creams later we finally made it out of the park and into a taxi, where James talked about the fun sprinklers and my daughter talked about the penguins all the way home.

Special Education Meetup Group in NYC

I have been a member of various groups for all of my kids, but I wanted to share with you the most recent group I joined, the New York Special Education Meetup Group. Below is the group description taken from their site:

Our Community is made up of Parents, Educators, Caregivers and Students who want to share best practices, network, talk, share stories, and lend support to each other through the sharing of information. The group meets regularly. Anyone is welcome to attend these informative meetings which provide opportunities to: 

• hear from speakers 
• learn about resources in the community 
• network with other parents 
• keep updated on issues affecting children with special needs

Meet with other local Special Education parents, care givers, case workers and educators. Gather to discuss issues facing special education students and programs. Education Through Adventure is dedicated to experiential education and the students, educators and practitioners who utilize its philosophy. We are based in Orange County New York.

You can join the group for free to see photos of their activities, participate in related discussions and be updated about meetings around the city by going to and clicking Join Us.

Their next meeting is on June 1 at 7:15pm and is about equipping your home or classroom for the sensory child. I look forward to finding out more about this group and sharing my experience with you!

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