Posts Tagged ‘patience and fortitude’

Patience And Foortitude, Part whatever: A Special Needs Brainteaser – Can You Find The Dumpling?

December 9, 2011 Leave a comment

“Mom, I’m done.”

“But you hardly ate anything.”

“I’m full. I feel sick.”

“Okay then just sit here with me for a minute.”

“Could I have more dumplings?”

“If you want more dumplings you need to eat 3 more bites of chicken.”


James is motivated by dumplings to eat anything. I really hate to divulge my secret recipe (passed down from my own mother) but there is little more than flour and water to it. James has never been a picky eater – in fact up until recently it was just the opposite. But his new meds have really diminished his appetite and sometimes getting him to eat anything these days – ice cream, ramen noodles, lasagna – is impossible. Unless it’s dumplings, or something that will be rewarded with dumplings.

Despite James’s numerous medical, developmental, and social issues, we have been very lucky to have an affectionate, loving, generally well-behaved child. But since Thanksgiving break (more appropriately dubbed Thanksgiving breakdown) James has been having a rough time (to put it mildly). For lack of a more graceful adjective, he has been acting “more disabled.”  He has been more short-tempered when his siblings are being noisy, more obsessive about his handwriting being just so, more defiant about beginning everyday tasks before he is “ready” (shower, homework), and more prone to making random noises, talking to himself, and dramatic tears. His para has also noticed some changes at school.

The morning routine tragedy is manifesting itself as a pit of anxiety in my stomach every morning and a bout of insomnia in the evenings. A while ago I wrote a “thank you note” post for James’s new alarm clock, which reset a difficult morning ritual into a fresh, effective wake-up call. Then last month James decided that he could no longer tolerate the “scary, loud” car noises his alarm made (the Hot Wheels alarm he had carefully selected), so we switched it to the traditional radio station wake up. Since Thanksgiving break even the radio alarm has become a source of misery, and there have only been 3 peaceful mornings (including last Saturday and Sunday when James was allowed to sleep in).

I’ve been hesitant to write this post because I don’t want the stigma of “behavior problems” to follow (or precede) a child with such an unblemished behavioral record, so let me say right off the bat that what you are about to read has in no way carried over to James’s school life (and believe me, I’ve asked). I’ve also been hesitant because I’m just not sure I can do justice to the trauma that is becoming the first 20 minutes of every morning.

There are a few variations on the morning theme, because I sincerely believe that I have tried everything short of screaming and corporal punishment at this point. But in general, the morning starts off with the alarm clock playing music. James gets out of bed to turn the alarm off – this involves stomping over to it, shouting at the “bad” alarm clock, or sometimes just slamming it off and going back to bed. About 5% of the time James actually remains out of bed and goes to the bathroom, where he sits groggily for as long as I let him – 15 minutes would not be unusual if I was in the kitchen packing lunches. The other 95% of the time James gets back into bed and goes back to sleep or pulls the covers over his head and waits for me to come into the room.

Upon entering the room James is either sleeping or sees me come in and immediately says “It’s not morning” or “No, I’m too tired.” I have come bearing pills, gifts, bribes, threats, songs, tickles, hugs, stories, surprises, breakfast menus – it is no use. He refuses to get out of the bed to get dressed. After about 5 minutes of futility I finally pull the covers off of the bed, to which he responds with screaming. It gets even better if I have to lift him out of the bed and carry him to the clothes – though he has lost a significant amount of weight it is still quite a sight to see me wrestle a flailing, yelling, 5-foot tall boy to a standing position.

Once finally out of bed and realizing that the morning is in fact here, James resigns himself to putting his clothes on while talking back, slamming doors, or throwing toys around. Or, on less dramatic mornings (about 50% of the time) he sits on the side of his bed with one leg in his underwear, where he remains frozen in place as I check in every 5 minutes to encourage progress and dish out strikes.

Yep, strikes. The “strike system” has been effective for a long time in our household – 3 strikes and you lose a privilege or 3 strikes and you go to timeout, depending on what is realistic in the moment. James’s three main privileges are Wii, computer time and TV time. A strike can be issued for anything from talking back to not following directions (the fifth time) to fighting with siblings, you get the drift. James has lost the Wii and computer every morning since Thanksgiving weekend, and has lost TV more than 3 times in two weeks, which is highly unusual. That is a total of 6-9 strikes per morning (and my husband feels like I am being kind).

Now though I am usually able to issue strikes and get James moving without raising my voice, the ordeal is nothing if not noisy. By the time James is dressed, strikes have been issued, threats have been made, and James has fallen into full blown hysteria. Loud hysteria that sometimes wakes my two sleeping toddlers. When my two sleeping toddlers wake, my husband usually follows suit. Needless to say, nobody is happy about being woken up this early (especially my husband).

But now James is dressed. And happy. He comes to the kitchen to tell me he’s sorry and he’s going to be good today. I give him his medication (which will conveniently take effect as he goes to school). He starts his rambling chitchat about breakfast food and what day it is and what he will do at school today. He says “I love you” half a dozen times. I look at the clock – it’s been anywhere from 20-45 minutes since he was woken up. I’ve been up for an hour and already feel drained and exhausted, but am also relieved that the worst is over.

Unless he woke everyone else up. In that case the babies are up and crying and my husband is up and angry. Angry that James woke everyone up and angry that James was screaming at me. And frustrated that my disciplinary approach is obviously not working. I’m not complaining about my husband, I’m frustrated too. But if my husband is upset, chances are that James will soon be upset again too. At this point I would do almost anything to keep the peace.

So where, I ask you, is the dumpling?

Before you come up with an answer to this riddle that would probably work on a typical child, consider these clues:

1) James doesn’t seem to care if he loses his privileges anymore – he is perfectly happy (alot of the time) to read a book, play with toys, or just to stare at the ceiling and make noises in his room when he doesn’t have the Wii, computer or TV available to him. So strikes and privileges have lost a lot of their effect over the last couple of weeks.

2) James is pre-medication when he is woken. One of his pills must be taken in the morning and lasts for around 10 hours to get him through the school day. It is hard to know if he is unresponsive to direction because he is so out of it when he wakes up or because he is being defiant (probably a mixture of both).

3) I have tried both negative and positive reinforcement. I have issued strikes and offered gold stars toward a big prize. I have offered small prizes like wonton soup for breakfast or doing a Mad Lib together before school if he gets ready quickly enough. I have threatened that Santa is watching and that I will drop him off at the police station instead of school if he doesn’t get dressed and stop talking back. I have stood in his room while he screams at me and hugged him as if I didn’t notice, hoping he would give up.

4) I have put him to bed anywhere from 6:30pm to 9:30pm for a total of 10-13 hours of rest/sleep. James is allowed to read for a while with a dim light on in his room because he is afraid of the dark. Sometimes he reads for an hour, sometimes for 2-3 hours. The amount of sleep he gets has not seemed to affect his willingness to wake up – he seems more concerned with the fact that “it is dark and therefore not morning” when I come to get him out of bed.

5) I don’t usually raise my voice. Even if I thought that would work it is usually early in the morning and everyone else is still asleep, so I’m trying really hard to keep things quiet.

Someone recently suggested that I threaten to pop a balloon (his #1 phobia) if he isn’t dressed in five minutes. Another suggestion was to make a loud noise like snapping a belt to startle him into moving. I understand the theory behind both (completely independent) suggestions (made days apart) but feel uncomfortable with frightening him into getting ready. Additionally, if James is frightened and then still upset upon arriving at school, he will dwell on it for half of the day. Example: someone different than usual met him at the school doors one morning last week and he worried about it all day and was still telling me about it on the way home.

I should probably ask an expert about this, but to be perfectly honest I don’t have time to go to the bathroom by myself let alone set aside time to meet with a professional, especially in the throes of touring every last middle school on earth. And besides, what better advisors to consult than other special needs parents who may be reading this and thinking, Been there, done that, or I found the dumpling!

What do you think? What is the motivation James needs to make the morning go better? Should I carry around a bag of dumplings with me at all times?

Patience and Foortitude, Part 5: Machine Gun Mouth

October 17, 2011 1 comment

It’s hard to believe James didn’t speak until he was four and a half years old.

Sometimes I have to reach deep within myself for a bit of that initial indescribable excitement I felt when he said “up,” “pluh” (please), and “muh” (more). Mere months later, after we had started to give up hope and were looking into assistive communication and teaching sign language, he was stringing words together and was well on his way to being what we refer to as “Machine Gun Mouth.”

I don’t know much about guns, but whenever I envision a machine gun I think of a blast of ammunition spraying out and random bullets hitting whatever people fall into their path. Replace “ammunition” with “conversation” and “bullets” with “words” and you have Machine Gun Mouth, aka my son James.

You probably think I’m exaggerating, or at the very least being a little bit mean. Unless, of course, you’re one of the people who spend a lot of time with James in which case I am willing to bet you chuckling at the accuracy of the above description.

I’m often walking 3 kids back and forth to school, so I’m not going to go to the effort of taping our conversations. But recently one morning my husband stayed home with the babies while I walked James and I was finally able to record about 6 minutes worth of an actual trip to school on my cell phone voicemail.

Without further adieu, here is James aka Machine Gun Mouth (my responses are in italics):

So do you love me? I love you so much. You’re the best mom (hand up for high five).

James I love you but I want you to change it up today – you can’t wake up so grumpy every morning.

I’ll change it up. See? (big smile) See? I changed it up. Okay, good.

See mom? I changed it up? Mom, look I changed it up. Yes I see James – thank you.

Mom? I’m going to change it up. Good, now stop repeating yourself please.

Oh, that’s cool. What? I don’t know. What’s cool? I don’t know.

I love you so much. Thank you. Do you love me so much? You know I always do because I’m your mom.

So, you know what my mind is thinking? No, what? How good I’m going to be today.

It’s a beautiful day today.

James, keep up. You don’t want to be late.

Mom, you’re so pretty. You’re the prettiest mom. Thank you. What do you say to me? What do I say? That I’m the most famous boy. Oh, really? Yeah, I’m the famous boy and you’re the prettiest mom.

Call of duty 4 the lethal war. What? Call of duty 4 you know, for ipod. No, what about it? Its call of duty 4, you know? The lethal war. What about it James? Why are you talking about it? Noah plays it in Schenectady (distant cousin seen once every few years) and its a shooting game. Shooting games are bad. Why are you thinking about this? Call of duty 4 is for ipod. ipad or ipod? ipod. Look at that cute black dog. Yeah that is a cute dog. Remember hally tosis and he breathed on the robbers and knocked them out with his tongue (book we read, last year)? Yeah, good old hally tosis. it was so gross, right? and the robbers went “blah” right?

Look, there’s a baseball. Baseball, huh? See it, mom? Mom – baseball is cool, huh? yep. you know, baseball. I play baseball like this (throws a pretend ball) on my team, right? Right, mom? James, look where you’re going! Don’t walk until you see the white walking man. Where do Dad and I play baseball? James, stop talking while you’re in the street – right now. Where? Do we play at Riverside Park? No talking just walking! James eyesontheroadrightnow!! Okay.

Oh, we can start talking again. Whew, we made it across the street!

Mom. mom.  yes? mom. what? mom. James spit it out. Um… I love you.

So today is a nice day right? yep.

I love you so much, do you love me so much? Yep.

It’s a nice sunny day. right mom? right? yes James.

Treat ’em right this Halloween night! (said while pointing at a passing stranger with a small dog who looked at us strangely and hurried away) What did you say? You should treat ’em right this Halloween night. Right, mom? (starting to laugh despite myself) Where did you ever think of such a thing? I learned that from Duane Reade.

So, what do you do on Halloween? Do you trick or treat? trick or treat, right? you know? what do you need? need? you know? oh, to bring a bag for candy? and what do people give you? mom? what do people give you? mom, do they give you candy? James, stop at the corner. James, right now! You need to look where you’re going – do you see the orange hand?

Now, this conversation is when it’s just James and me and yes, that was really only about 6 minutes worth of a 15 minute walk to school. Okay, go back and try to read all of the following while singing “Wheels on the Bus” and “If You’re Happy and You Know It” and you will be able to experience a tiny bit of what it’s like twice a day for me when I have the other two kids as well. If you can add your own screaming baby track in the background that’s an added bonus about 25% of the time.

Transcribing this conversation was eye-opening for me in some ways. I only said “I love you” back sometimes. I bet that looks terrible! But at what point is it okay not to say “I love you” back? The fifth time? The twentieth time? How about the fiftieth time – in one day? When you consider that James said “I love you” at least three times in six minutes you will realize that this is absolutely no exaggeration. I also noticed that many of my responses were 1-2 words, the way I respond when distracted (or trying to get out of a conversation…).

I know, I know – this is my child, for crying out loud! I’m supposed to say I love you and simultaneously be thrilled at what an affectionate little boy I’ve raised. I should also be extremely grateful because there are plenty of children who did not start talking at 4 years and are still not able to talk at 24 years old. And most of the time I am grateful, or at least cognizant of that fact, truly. But sometimes, I long for a quiet, peaceful minute, or at the very least a conversation that I can follow and be engaged in.

I’m not saying there is anything to be done about this “issue,” but a little venting goes a long way toward refilling the Patience Tank, right? As it often goes with family and loved ones, we all do things that annoy the others from time to time – biting nails, leaving dirty socks on the floor, dumping out ALL of the legos. My husband, who loves me dearly, would probably tell me not to cast the first stone regarding excessive talking.

Or should I say spray the first bullets?

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