Monday, May 31, 2010


We have decided we are going to Disney World next year. At first, we thought going in April during my break would be a good plan- it'd be cooler, and less crowded. Not so much- my break occurs either the week before or the week after Easter each year, and according to the book and the websites, that is one of the most heinously crowded times of the year to go! It's also much more expensive. Hm. So, it's back to summer now. We're thinking probably mid to late August, because kids in the south are back in school by then.

So, we're starting to look into things. We need to get a suite with a couple of bedrooms, and a kitchen, because neither of us is optimistic about Frank being able to sleep with us in the room with him or about him eating any regular breakfast food by then. Yes, we realize he'll be nearly five, it's well over a year away, much can change by then, but still.

There's much to consider in this plan. Like many in my family, Frank does not handle extreme heat all that well. *looks around innocently* Yes, okay, I admit it- he comes by it rightly!

Frank, like many kids with SPD, does not handle change well at all. And a Disney vacation is chock full of change, starting with his very first airplane ride. He'll be sleeping somewhere that's not his room, which is difficult for him, and eating and sleeping schedules will be a bit off. (At least Orlando is the same time zone as we are, so we won't have to add jet lag into the mix!)

Then there's the crowds...and the colors...and the bright lights...and the NOISE. Never mind the BO from all the other people there. The kid may need Valium. Hell, I may need Valium!

Frank is quite enthusiastic about this so far. He wants to ride the Dumbo ride, and says that as soon as he sees Mickey, he's going to run up to him and give him a hug, and he wants to eat dinner with Mickey one night. I'm trying to be cheerful and upbeat about this, to keep him in the spirit of it, but part of me is worried. Darrel is so looking forward to this- he loves Disney, too- and I'm afraid he'll be disappointed if it's too overwhelming for Frank and the kid does not have an amazing time.

Any other SPD parents out there done the Disney thing? How did it go for you? Do you have any tips for me?

Really? One case proves it doesn't exist??

This guy seems to think that because his method worked for this girl, that means SPD does not exist. Someone needs to explain a few things to him. (And I'd be happy to do so, except for the fact that the Leave A Comment function seems to be disabled. Hmmm...)

1. I'm not a scientist, but even I know that anecdote does not equal data. (Thank you to the smart folks at the messageboard for for teaching me this!)

2. Notice the girl was allowed to pick out her won clothing even after "discipline" was established.

3. Of course, kids are never misdiagnosed with anything. It's totally not a possibility that this ONE CHILD was misdiagnosed and the misdiagnosis happened to be SPD. Does this mean that because some kids are misdiagnosed as having ADHD that ADHD does not exist, too?

4. Also possible- maybe the girl was too visually stimulated by everything that had been in her room up until that point.

5. She could have just given up because she realized her parents were not going to tolerate her trying to communicate her sensory issues to them. This, to me, is the saddest possibility of all.

Monday, May 17, 2010

Questions, questions

So, after peeing like a champ in the potty for a couple of weeks, Frank simply...stopped. Why? I asked him, point-blank, if it was because we didn't have any more prizes, and he told me yes.

I was annoyed, but a bit unsure as to what to do: I mean, he'll eventually have to use the toilet without the promise of a reward at the end, and he does know what to do, and what that feeling of needing to go feels like now...but maybe it's too soon to wean him off prizes for it? Darrel made a decision:

"Frank, you are a big boy. You know how to use the potty now. You do not need prizes. You WILL go pee-pee in the potty every day from now on!"

Picture the above said by a six-foot-three-inch tall bald man, glaring down at a three-foot-two-inch tall preschooler. I expected tears. What my husband got for his tirade was a very meek, "Okay, Daddy, I'll do that." And he does.

The same went with the McDonald's Chicken McNuggets. Darrel informed Frank, in very no-nonsense tones, that he WOULD in fact be eating that chicken, and if he didn't eat it tonight, he'd get it for dinner tomorrow night, and so on. So, tonight, the third meal he was presented with the chicken, what did he do? Well, first, in a gesture tried by children who have pets in the house across the nation, he tried the "Oops, my food fell on the floor! Oh, look, the cat is eating it!" move. Let's just say, he needs to work on subtlty here- he basically pulled this right in front of us. Madison, the cat in question, reacted with glee and trotted right over, only to be thwarted by both of us yelling, "Frank, pick that up and eat it NOW!" in unison. Madison scrambled for cover. Frank sobbed and picked up the chicken and proceeded to nibble on it.

He eventually ate all the chicken tonight.

His OT, D, told me several months ago that quite freqently, food issues like his often become a behavioral issue as opposed to just the physical issue we started out with. It seems this is what is happening now. I am so torn by this- I don't want to force him to do something that is physically painful/unpleasant/whatever for him, but at the same time, if it's something he can handle, and needs to be pushed, well, he needs to be pushed. But how do you know which is which? How do you know when he's using his history to manipulate things, and when something is truly not right for him?

Sunday, May 16, 2010

Sleep and food

Okay, so we've put him to bed at 8pm, instead of 7:30pm, the last two nights, and have limited his naptime to one hour. The result so far is that he's awakened at about 6:30am instead of 5:30am. An improvement, I guess, but not enough for either one of us. (Edited to add: It is now 8:30pm, and he is still singing to himself.)

Darrel went out last night and got McDonald's for us. He bought a four-pack of chicken McNuggets, and gave them to Frank at lunchtime today. Frank has not eaten any of them. I told Frank that was fine if he wasn't hungry at lunchtime; he could eat them for dinner. (He's eaten McDonald's nuggets before, which is why we are digging our heels in on this issue.) He's announced he is not hungry for dinner. *sighs* That's fine- he'll have them for dinner tomorrow night.

It's like this with everything food-related, it seems like. If he doesn't eat something at least every other day, it's like we're introducing something totally new again. It's incredibly frustrating, especially so when we KNOW he's happily eaten the object before.

Still working on the vitamins, too...

Friday, May 14, 2010


Oh my word, I am tired. Bone tired, where your arms and legs feel like they weigh about a thousand pounds each.

I worked last night, strictly volunteer. It was for a fundraiser connected with the district I work in. The fundraiser was very successful- there was an Anonymous Donor who gave a Ton of Money for something specific, in addition to all the much smaller checks that were written. (Oh, and I met a Famous Deaf Person, too- if you know me in real life, check out my Facebook page for a picture with said Famous Deaf Person.)

I got home at shortly after 10pm, but didn't fall asleep until after 11pm, because I simply cannot wind down that quickly. Now, in between school and the fundraiser, I had come home and showered, specifically so I wouldn't have to do that this mo9rning, which would have worked out awesomely- when I shower in the morning, I get up at 5:45am, and when I don't have to, I get up usually around 6:10am. However. My husband had to go to Philadelphia this morning for a daylong meeting with the company he does consulting work for. This meeting started at 8am. We live a good two and a half hours from Philly on a good traffic day. You do the math.

Yes, Darrel was awake and getting ready by about 4:30am, and left at about 5am. I, the insomniac, never really went back to sleep after that. Not his fault, obviously, that the two things happened to be within twelve hours of each other, but telling myself that didn't help much as I lay there at 5:15am, trying to will myself back to sleep for another 45 minutes or so.

What does this have to do with my son, you ask me? The little bugger, who rises with the sun each morning, (I wish I were making that up, I really do, especially since, according to my local weatherman, it's rising at about 5:35am these days.) was wide awake and talking to my husband as my husband got ready to leave. At 5am.


And, he didn't seem that tired this evening when we put him down. I mean, sure, he went down easily enough, because it's the same time we put him down each night, but right now, it's nearly 8:30pm, and he's still singing to himself. When does this kid sleep? Why does he have so much energy and we both feel like we've been hit by Mack trucks? And does anyone have any advice for getting a three-year-old to sleep past the buttcrack of dawn???

Tuesday, May 11, 2010

At last!

Frank has peed in the potty at school, the last frontier for him! He was very pleased to show me his new toy he picked out of the prize bag I got for him at school, and yet seemed kind of embarrassed when I made a bigger deal out of the peeing than I did the toy. He was definitely proud of himself when we got home and I told Darrel all about it, though.

It's hard to say who was more excited by this development, me or his head teacher, N. She ran over to me when I walked in the door and gleefully told me all the details of what happened. Of course, he'll probably completely master this skill by the time June ends and it's time for him to leave for the summer, anyway...

I had been asking him a few times recently to "read" one of his books to me, and he'd always responded with, "I don't know how." This afternoon, I got him to "read" two of his books to me, and then Darrel got him to "read" a third. Darrel was quite amazed at how many sentences Frank knows verbatim from the Curious George book. He should- Darrel's read that book to him almost every night for going on three weeks now.

Sunday, May 9, 2010

Mothers' Day

Nearly four years into this gig as mommy, and I'm still taken aback when people wish me happy mothers' day. I always have this moment of *blink*, oh, they mean me! I mean, yes, Frank calls me Mommy every day of his life. ("Mommy? Mommy! Mommy...") But I have this vision in my head of what a Mommy really is, and I feel most of the time like I don't live up to that. Yes, I care for him, and cuddle him, and teach him, and fight for him, but still...there's this thing that we have about mothers, putting them on pedestels, almost, and I certainly am not worthy of that!

I think about my own mother. My mother, those who know her will agree, is not a warm fuzzy mommy. My mother in years past would have been called a Tough Broad. She's an RN, retired now, forced into early retirement by ALS. At age 63, she has lived in assisted living for almost two years, and is still by about ten years the youngest person who lives in her building. This June, it will have been seven years since her ALS diagnosis; she was having trouble with her feet for several years before she received the diagnosis. When she leaves her room at the home, she is almost completely wheelchair-bound now, a state which I know must infuriate this woman who has spent so much time taking care of others, both professionally and personally, as well as herself. For me, her oldest child, watching this slow deterioration, the thing that hurts the most is knowing that such a strong, independent woman cannot take care of herself anymore, and cannot fix this, no matter how much she wants to.

It's the not being able to fix it, I think, that gets me. I have many health problems. When I was little, and I was in an out of hospitals for well over a year, there was even some question I know now, as to whether I would live to adulthood. For a while it was thought I had cystic fibrosis, as well as other illnesses. It turns out what I had was something different- bronchiectasis, a lung disorder that at the time was mostly found in old people, and msot of them died within ten years of receiving their diagnosis. (It has since been discovered more and more in younger people who go on to live normal lifespans. Indeed, it seems that the reason prognosis was so poor for it in 1978 was because most of the old people being diagnosed with it at the time would have died within ten years anyway, because they were old!) I also have a Primary Immune Deficiency.

What all of this means is I get sick a LOT. (It also means that choosing to make a career of working with kids may not be the most intelligent career choice I could have made!) One year I was absent from school for 30 days. I was the kid whose attendence you look at and say, "I don't understand how this kid is passing, because she's never here!"

The answer is simple: I passed because of my mother. In a time before IDEA, my mother established an agreement with teachers at the beginning of each school year. Not only would I be able to excuse myself to get some water any time I wanted, without asking the teacher, but any time I was absent, they got all my work together and sent it to the main office. Mom would pick it up, and make sure I did it all. This meant that when I got back to school, whether a day or a week later (or, in the case of chicken pox, two and a half weeks later), the only things I generally needed to make up were tests.

My mother never let me feel sorry for myself, or use my physical limitations as an excuse. I took regular Gym classes. (I kinda would have liked an excuse note or two there, Mom.) I sang in choirs from fourth grade right on up through senior year of high school. I fenced for four years on my high school's fencing team, and went to fencing day camp during the hot 90+ degree summers. I was never, ever allowed to use one of my absences as an excuse for not doing homework or not getting something. "If you don't get it," she said. "It's your repsonsibility to go to the teacher and ask for help."

Mom drilled me all of fourth grade on my times tables. She quizzed me on spelling words. She never proofread essays for me, because she freely admitted that my writing skills were better than hers by the time I was in the sixth grade. That year, I tested as reading at the college level. (I always had a very sophisticated vocabulary as a child. I have a feeling that was at least partly because of all the time I spent in the compay of medical people.) But she made sure my homework and projects were completed on time.

Now I am 38 years old. I am married and a mother. I have a job I enjoy (when not overrun by beaurocracy) and two college degrees, both of which I essentially paid for myself. I got the second one while working three jobs and going to school at night. I have had the courage to travel overseas, and speak a foreign language with native users of that language. I now fight for my child, who also has special needs, albeit needs much different than mine.

All that I am today, I am because of my mother. She is feisty, argumentative, stubborn, loyal, devoted, and loving. She is Mom, and I love her. Happy Mothers' Day, Mom.

Thursday, May 6, 2010


Frank continues to do well with the toilet here at home. The phrase that seems to be evolving as his catchphrase is, "I need to do something in the potty." Each time he goes, he really only squeezes out a few drops, but I guess he's learning to identify that feeling, and eventually he'll learn to be able to hold it a bit and let out more than a few drops at a time. He has yet to pee in the toilet at school, though. He sits quite nicely for them now, several times a day (thank you, Cars potty seat!). His teacher, N, tells me that he'll sit for twenty minutes, singing to himself, smiling and chatting with the other kids as they come and go, and really seems quite relaxed about it all now.

This morning in the car, he told me he wants to wear Big Boy underwear to school Monday. "Okay, honey," I told him. "But that means you have to go pee pee and poo poo in the potty at school, and you haven't done that yet. When you do that, then you can wear the underwear to school." He seemed to accept that, and assured me he would do that. I have a feeling that was his motivation for sitting on the potty, no lie, for a half hour today immediately after nap- I think he was trying to squeeze out something, anything! He also has a prize bag at school, too, for when he starts going there- I wanted to make sure he gets instant gratification when he starts producing there.

I only hope I said the right thing, in telling him he's not allowed to wear it until he starts peeing in the potty at school. I wanted to try and make it seem alluring to him, like something to shoot for. Maybe I should have said okay, and let him wet himself a few times Monday, anyway? We'll see. We'll try him out Saturday during the day in underwear and see how he does.

They had "muffins with Mom" at daycare today, too. They made the muffins, and the kids also made little flower pots with different-colored cutouts of their hands as the flowers. It's really cute. He also made me a card on construction paper. On the front is his handprint. His handprint! In bright red paint! Six months ago, getting his hand covered in bright red paint would have sent him into hysterics!! And N told me he was really into it, and was very calm about the whole thing.

We're still working on getting him to eat a chewable vitamin, and he still eats a godawful diet, but he fingerpaints! And gets his hands dirty in the name of art! To me, these things, so ordinary to others, are miracles.

Tuesday, May 4, 2010

Three times!

He peed three times in the potty this afternoon, and all three of them were self initiated! We are so excited. It's crazy- it's like this switch just went on in his head.

Oh, and he actually ASKED to fingerpaint in school today. "Blue fingerpaint. It's a good fingerpaint color," he told me proudly. The daycare director told me about it, and she was as excited and proud as I was!

Sunday, May 2, 2010

It was his idea this time!

So, this evening, Frank and Darrel were in the living room, watching TV. (I was upstairs.) Frank went over to Darrel, who was sitting in the recliner, and said something like, "I think I have to do something...but I'm holding it." So Darrel brought him upstairs and sat him on the potty.

He read three Curious George books, and then Frank told him, "I think I want to be alone for a while." So, Darrel left him in there, after reminding him that, if he does anything, Mommy and Daddy have to see the pee pee or poo poo in the potty for him to get a prize, so don't flush.

A minute later, Frank sang out, "I think I'm done!" Darrel went in to check, and sure enough, there was pee in the toilet (and on the floor)! We praised him lavishly and let him pick a prize, and then we called Darrel's mom, who also praised him lavishly. He's quite pleased with himself, and informed me that he is bringing the Disney figurine he picked out of the bucket to school to show his teachers tomorrow. was his idea this time...that must mean he's really ready to do it, right? Right?

Saturday, May 1, 2010

My son is displeased with me.

The Knetucky Derby is on today. It's on right now, actually. Well, right now is what we in my house call the "pre-game show". I love horses. I love horse racing. This event is my Super Bowl. This event is on my list of things to do in person before I die. I am taping it and watching at the same time.

Anyway, the boy. He just came upstairs, and tried to wheedle his way onto the computer. "No, I am doing Mommy things on the computer now," I told him.

"Okay," he said, pulling out my desk chair and sitting on it. "Then can you turn on a Frankie show?"

"Nope," I told him. When he gave me a shocked look, I explained. "Do you see those horsies on TV?" I asked him. When he nodded, I told him, "This horse race is very very important to Mommy. Mommy will watch it. Mommy will listen to it. You can watch with me, but you have to be quiet."

He went downstairs to watch his shows and play with his toys. ;)