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Family & Professional Resource Fair this Thursday 11/29 – not to be missed!

November 27, 2012 Leave a comment

 

The Family & Professional Resource Fair for parents, family members, people with developmental disabilities and professionals.
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Thursday, November 29, 2012
10:00 am – 2:00 pm
Church of St. Paul the Apostle
405 West 59th Street at 9th Ave.
Free Admission!
Info from over 90 service providers
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8 invaluable workshops
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free Manhattan Family Support  Directory
5-minute massage for caregivers and caregiver gift bag
Spanish and Chinese interpretation at the workshops
free cash raffles

Monday Minute: A Cloudy Day (aka The Dark Side Of The Foorce)

It’s good that May is over so I can stop acting like I deserve a “mother of the year” pin and go back to my whiny, rotten self. My rant this evening has to do with the end of James’s school year. That being said, I want to make sure that nobody reads this as a complaint about James’s specific school when I say that the end of year school schedule (or lack of one) is ruining the last two months of fifth grade for us.

Let me give you some examples: this week, Monday was field day (except it rained so it wasn’t), tomorrow is a half day, Wednesday is now field day make up (unless they bump it to next Tuesday), Thursday is a day off and Friday is “Friday Fun Day,” as have been the last several Fridays of fifth grade. Next week includes field day makeups (maybe), another half day and the 5th grade class trip. Until recently, James had only lost his ipod privileges on 3 mornings since Christmas. Over the last month he has earned it 1-2 times per week at the most.

I feel like schools have become so centered around standardized testing (which James is exempt from) that once the tests are over it’s almost like, okay, what now? In the case of James’s school, what now = parties, field trips, field days, fun days, concerts, ice cream socials, class trips, graduation parties, award ceremonies, half days and days off. Really? We couldn’t just call it a year 4 weeks early?

Like I said, I know that this is not specific to James’s school (where we have had many positive experiences over the last 4 years), but it is so frustrating to watch James, who is absolutely at his best with a (somewhat) predictable, calm schedule, deteriorating before my eyes. Spacey, tired, moody, emotional, defiant, and did I mention spacey? Like a rocket ship? He desperately wants to do everything everyone else in his class does (except for the loud stuff) but as you can tell from last week’s accident, keeping up is not going well for him. Every Friday “fun day,” I come to the school yard to observe James standing off to the side of a kickball game by himself (with his para), or even worse, by himself and looking upset because the music is “too loud” or because some of the kids brought “snaps” to school (man, I used to love snaps).

99% of you who know James would classify him as mild-mannered, well-mannered, and generally an obedient, sweet child. Well, I’m here to let you in on a little secret – that well behaved child is the result of very carefully orchestrated efforts by this entire family (fine, mostly me). I think with the craziness of school over the past weeks, the throng of family members (whom James loved seeing) in town this weekend for the Central Park challenge was the proverbial straw in a camel’s back of a week. And it’s only Monday.

But I digress – here’s an insider’s glimpse at the dark side of the foorce (come on, it was just glaring me in the face). This is one minute of James’s record 7 time outs this afternoon – and remember, he got home at 3:30 and went to bed at 7:30.

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James is in italics, my responses are in bold (they should be in flames tonight)

Margaret, what are you reading?

M: Harold and the purple crayon.

Do you want me to read this truck book to you? Say yes.

M: No thanks.

Say yes.

James, what did I ask you to do?

No.

What are you supposed to be doing right now?

I don’t want to.

Go get your pajamas on right now, it’s getting late.

(James groans loudly in frustration, turns around and throws the truck book across the room)

You’re mean!

And you’re in time out.

no!

Yes, go right now. Go to time out and don’t come out until you are in pajamas and ready to apologize for throwing that book.

No. I don’t want to.

Then just go to time out – right now!

(James sits on the couch defiantly)

James do not make me come get you off the couch.

You’re the problem! You’re a bully! It’s not time for pajamas yet!

(I stand up. James storms into his room and slams the door. Three times.)

James stop it right now, you’re going to pinch someone’s fingers in the door!

(Door stays closed, instead James screams at the top of his lungs and items start hitting the door – I open the door a crack)

James, we are going to start our family movie – you may not come out until you are in pajamas and have apologized. You will miss the movie if your behavior doesn’t change. Right. Now. And you have to pick up all of these books that you just threw. 

10 minutes later:

Margaret I’m sorry for screaming. Adam I’m sorry for slamming the door. Can I please sit down?

How about, Mom, I’m sorry for talking back and not following instructions all evening?

Sooorrrrrry. (face crumples) I’m really tired and it’s hard to follow instructions.

You still have to do it. You may join us if you can be peaceful and quiet.

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Which he was, until 20 minutes later when I announced it was time to pause the movie until tomorrow and get ready for bed.

I think I’d better hang on tight – it’s going to be a bumpy ride until June 27th.

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.

To Bus or Not to Bus…. please help answer the question!

April 13, 2011 8 comments

The wheels on the bus go round and round and round and round…. or sometimes not at all if you are taking a bus in NYC. Often times the right school for your child is not walking distance, and in some cases an hour commute twice a day isn’t going to work out for one reason or another. When you are in the city, and when your child has special needs, they probably aren’t going to walk or bike or subway back and forth on their own.

I have been very fortunate so far and have not had to put James on a bus. When I lived in Ohio I drove him back and forth each way on my way to school, and in VA when I worked much longer hours I had a lot of help from Ryan getting James to and from school. In NYC we have been fortunate enough to live 7 blocks or less from James’s school, so it has been an easy decision to spend a little extra time walking with James and getting some exercise, too. Except on the days when I have 1, 2 or 3 whiny kids and a stroller full of groceries. And it’s raining.

We are currently considering moving north by 30+ more blocks. Not walking distance anymore. Totally doable by subway, but much less convenient for Ryan and I. Ryan would have a much longer commute so stopping to drop off James would add even more time to it. I don’t anticipate dragging two toddlers downtown on the subway once or twice a day to get James would be pleasant either, though I haven’t ruled it out. That leaves me to struggle with the bus issue.

I admit it. I have a “bus issue.” Not without reason, though I may sound like a hypochondriac to some people, including my own family. The pros to having James take the bus are obvious: less effort and time on our part in getting James where he needs to go. The cons I am sure of: a much longer trip to and from school for James, resulting in a longer day away from home. Then there are the potential cons: falling up or down bus steps and injuring himself or others, getting bullied on the bus, not getting off at the right stop one way or the other, having an accident on the bus because the trip is too long and nobody made him go to the bathroom before leaving school, less face to face time with teachers because we don’t do drop off or pick up anymore, a more tired child arriving at home to start homework, resulting in more tantrums and more stress at home.

The potential cons, as with many issues, are what really scare me. Many of the potential cons need only to happen once in order for something really bad to have happened, and with a special needs child the likelihood of them happening more than once is much greater. Also, other people’s stories. I have heard so many stories, mostly of the horror variety, about special needs children and buses I cannot even count them. As my husband likes to point out, most people don’t walk around talking about the nice bus ride their child took to school that day, so I am asking you to. Please share with me your stories and opinions, good or bad, regarding NYC school buses. I am especially interested in hearing from people who have had direct experience in putting their special needs child on a bus for special needs students in Manhattan, but welcome any related stories and comments.

I would love to be able to make a rational, educated decision about the bus. So please, share your bus stories in the comments section. Every bit of information is helpful, and I plan to post my findings as I look further into the “bus issue.”

To bus or not to bus?