Thursday, December 30, 2010

Going to the dentist

I took Frank to the dentist Tuesday morning. This is only the third time he's gone, and it went no better than the forst two times. Actually, it was somewhat worse this time, because he's getting to be too strong for me to hold down! I laid down on the chair, with him on top of me, both my legs crossed, locking his legs into place, my left arm across his chest, like a straitjacket, and my right hand on his forehead, holding his head back. Even so, he managed to wiggle away from my grip several times, screaming his head off the whole time.

I have to say, none of the people at this practice ever blink an eyelash at his behavior. Either screaming bloody murder during a cleaning is par for the course for his age, or they have so many special needs patients (I know they have a lot of autistic kids and kids who have Down Syndrome in their practice) that Frank is easy in comparison. I do know that, after our first visit, the hygenist told me, "Hey, he didn't bite, kick, or punch me, so he was a pretty good patient. As long as he was screaming, his mouth was wide open, so I could do what I had to do!" Better her than me- I'm really quite glad I did not go into pediatric dentistry!

The good news is, we apparently are doing an excellent job with brushing his teeth- no cavities, no spots even close to needing to worry about. The kid's teeth should be pristine- he doesn't eat anything with sugar in it!

Frank, of course, each time behaves as if he's the conquering hero, showing off the new toothbrush and the prizes he got. He also, of course, spends much of that day reminding me that, "We don't need to go back to the dentist for a long time, right Mommy?"

Oh, and with food? Tonight, he took a bite of carrot, chewed, and swallowed. And he only gagged on it once.

Sunday, December 26, 2010

Been a while...

Frank is now using the toilet at school to urinate. The catch is, he uses the adult toilet because the kids' toilets don't have doors, and therefore no privacy. But he's quite content to use the adult toilet, and his teachers seem to be fine with having to escort him down the hall to the bathroom, and he hasn't had an accident yet at school since he started using the adult bathroom, so I'll take it.

The catch is, he still refuses to use the toilet at all anywhere to defacate. So, at the suggestion of someone at school, he now tells us when he has to poop, we put a pullup on him, he hides in the closet (yes, I'm serious) for about five minutes, we clean him up and then put the underwear back on.

It's better than cleaning crap out of underwear.

He actually asks for mac and cheese for dinner a few times a week now.

There's a website that you can use to make a video from Santa for your child. You go and answer a bunch of questions about your kid, and they send you the video on email. I played it for him Christmas Eve morning. He seemed a little freaked out to find that Santa knows so much about him! His eyes got huge, too, when Santa said that he knows Frank's been working very hard, but he needs to work a little harder at trying new foods. It was hard for me not to laugh. A little while later he told me he was going to try a lot harder with carrots because, "Santa wants me to."

So, in the last couple of days, we have gotten from zero to 60, really. Yesterday he took two bites (that I let him spit out immediately) of a raw carrot, and today he actually took a bite and chewed it twice before spitting it out.

Bless you, Santa.

Friday, November 12, 2010


I got the paperwork from the Child Development Center. I have to get his teachers at school to fill out a form, his pediatrician has to fill out a form, and his OT needs to fill out a form. And I have about five pages to fill out.

Nobody told me, when my son was 17 months old, that a diagnosis of Sensory Processing Disorder would bring so much freaking paperwork. I thought, at the time, that it was going to be something more like a personality quirk- he'd get some OT, and be much better, and would just have little things pop up once in a while. I never in my wildest dreams thought it would affect everything we do with him, and every aspect of his life.

In other news, he's decided he likes the Dodgers. Why the Dodgers, you ask? "I think it would be really exciting to watch them." He then hastened to add, "I still really like the Yankees, too, though." Shades of his grandfather, my father in law. When FIL was a child, his whole family were Dodgers fans, only back then it was the Brooklyn Dodgers. FIL one day up and decided he liked the Yankees. My husband thinks it was just to piss off his father. So now, in a family filled with Yankees fans, and several generations of Yankees fans on my side, my four-year-old son has decided he likes the Dodgers.

Sometimes, life really is a circle.

Thursday, November 11, 2010


My son refuses to use a blanket to sleep. He'll curl up under one to watch cartoons, or to listen to a story, but he refuses to sue one at night, and doesn't seem to be able to articulate why. Up until this point, I haven't been all that concerned about it; we put him in thick footsie pjs during the winter, as well as a layer underneath on really cold nights, and the kid is way more warm-blooded than I am, anyway, so it wasn't a big deal.

But now he's wearing 5T shirts, and 4T pants. I'm having a hard time finding footsie pjs that fit him AND that feel good and don't have any "lines" (seams) to bother him. So, we've been trying to get him to use a blanket at night.

Epic Fail.

He even freaks out when we try and leave a blanket folded at the foot of his bed...or anywhere else in the room, for that matter. I KNOW it's because of his knee-jerk "anything different is bad" thing, but have no clue, short of forcing him to keep the blanket in there with him, to break him of his aversion to using the blanket at night. We've tried several different blankets, all to no avail.

Meanwhile, the kid HAS to be freezing at night. I know I am, and it's only November. I worry about him freezing his little butt off at 2am, but have no idea what to do to change this.

Wednesday, November 10, 2010


So, I called the Child Development Center at Big Area Hospital Frank was born at and made an appointment for him to see a developmental pediatrician. This is different from a regular pediatrician because this kind of doctor is a specialist in stuff that affects child development. The center wants him to have a full evaluation (And you should see the amount of paperwork they want before the appointment! They'll end up knowing him and his history better than I, who carried him inside my body for nine months, do!) before they decide what kind of therapy he needs, to rule out any physical issues. It's an approach that makes sense, I guess, but...the next available appointment isn't until MARCH 31ST! That's five months away!

I've looked around for a therapist for him, but there's not a single one in my plan within a 25 mile radius of my house who's taking new patients and treats kids as young as he is. So, this means I either have to go farther afield, a displeasign prospect during after-school rush hours, which is when I'd be bringing him to therapy, or go outside the plan and pay extra money, which is equally displeasing.

So frustrating.

Also, at an appointment with his pediatrician last week, she and I noticed a red thingie on the side of his chin. She thinks it's a blood blister type thing, but isn't sure, and because he's a fair-skinned child, and it's a sudden thing that wasn't there before, she wants him to see a dermatologist.

Great. Just what I wanted to be doing- schlepping around to more doctors.

I sure hope what people say is true- that one day I'll look back on all this and laugh- because I am not laughing now.

Monday, October 11, 2010

So, I haven't posted in a while...

There's not much good to report.

He got over the ear infection, only to get some kind of virus a couple of days after the ear infection diagnosis that the doctor thought could be MONO. (My reaction? "He's four. He only kisses ME!") Apparently it's not unheard of for kids his age to get mono, so on his birthday, no less, we went to the pediatrician and then to LabCorp to get blood drawn for testing. The good news with that is that it turned to be Not Mono, and he eventually recovered from what turned out to be one of those ugly little-kid viruses.

I took him to the allergist to get tested last week, because I wanted to know what the hell was causing his constantly runny nose since about April. He mentioned casually to me on the way there that his ear hurt a little. Sure enough, he had an ear infection in his left ear this time. SIGH. Yet another antibiotic. If he gets another one soon, I am going back to the ENT and raising holy hell. The tubes are supposed to be taking care of this, for crap's sake!!

The toilet issue is still a huge issue. We eventually gave up on the underwear for school- he never uses the potty, and screams hysterically at the mere suggestion of it. He also screams at the thought of pooping in any potty.

No new exciting news with food, either.

I am just so damn tired, all the time. Thinking about anything, let alone trying to fight him on potty issues or food issues, sucks the life out of me. I just can't do this anymore, I can't. I just don't know what to do. Everyone has a suggestion, none of which work, and I know, because I have tried EVERYTHING. I spend hours at night, tossing a turning, and thinking about everything...I just don't have the strength for this, any of it. I know I'm failing him, but I just can't do it.

Thursday, September 16, 2010

Getting there

So, Frank has settled in fairly well to Pre-K. His first day of not crying when I dropped him off was Monday, his fourth day of pre-K. I fully expected to almost start at square one after having the weekend off, so this was quite a pleasant surprise. Maybe switching to a totally new school for kindergarten next year won't be as much of a trauma as I fear it will be?

He's been wearing underwear to school, too. Not that he's actually using the potty, yet, but, as his teacher, J, said, "His accidents are getting closer to the toilet each day!" Today he actually held it until it was an emergency, and peed on the floor in front of the toilet because he simply couldn't hold it any more. His pants were off and everything. He still insists that toilet is not private enough, and asked Darrel the other day if he could build a door to put on there.

He greeted me after school the other day with the words, "Mommy, my ear hurts." Okay, this is the kid whose head has hit the driveway, and slid down a flight of stairs on his butt and laughed both incidents off, so the fact that he was complaining of pain would have alarmed me, anyway, but we had just been to the ENT three weeks ago to check on his tubes, and they are "still lodged in there pretty firmly." So I was quite freaked.

When we got home, it was too late to call the doctor- the office was closed for the day. He didn't have a fever, but I gave him Tylenol, and a half hour later, he told me his ear didn't hurt anymore. The next morning, we dosed him with Tylenol again, and sent him to school. (This early in the school year, I cannot be calling in sick, and Darrel just started a new job two weeks ago, so that would look pretty bad to be calling in sick or asking to work from home one day this early on.) Because I interpret stright through in the mornings, I told Darrel to call the pediatrician and make an appointment for immediately after school. I took Frank in, and sure enough, he has an ear infection, a bad one. Is that tube not working anymore? Not sure. He got an oral antibiotic and ear drops. He's going back in two weeks, anyway, for his yearly exam, and she said if his ear wasn't markedly better, she was sending us back to the ENT.

She also, because of his drippy nose the past few weeks, advised me to give him Calritin for the next few weeks, because seasonal allergies are really bad for a lot of people right now, and she thinks that's what's causing the drippy nose. Yay, not only do we have to put ear drops in, give him an oral (liquid) antibiotic once daily, we now have to give him liquid Claritin as well.

All of the above are going over with the boy as well as you might imagine. I had to sit on him and use my legs to pin his arms down this evening to put the ear drops in. As for the liquid meds? I bribe him with extra juice boxes. He is normally allowed to have only two of the tiny-sized juice boxes a day, and knowing this, he hoards them and reserves them for late in the day. I told him he could have one extra juice box per dosage if he took it without incident, and this evening that actually seemed to work.

There are days, weeks, even, when I feel like all I am doing is treading water. This has been one of those weeks.

Thursday, September 9, 2010

Make it stop!

Okay, so we have one child. About six months after Frank was born, I was seriously ill, ill enough that the surgeon who put chest tubes in me told me that if I had walked around in that condition another couple of days, I could have died. Tha doctor and another both told me that another pregnancy was not a good idea, because they "could not guarantee a positive outcome". Darrel and I easily read the handwriting on the wall and said okay, we're done. We had been leaning towards only having one child at that point, anyway, so it was a pretty easy decision for us all around.

Lately, I am surrounded by pregnant women. One coworker just gave birth to her second child two weeks ago, another one just announced her first pregnancy two days ago, my sister in law is pregnant with her second child, Darrel's cousin's wife is due in a few weeks with her first child, and three teachers at school gave birth over the summer.

I am finding, since I am being bombarded with pregnancy all around me, that I am jealous. And there's really no reason for me to be, because, as I said, before Mother Nature essentially made the decision for us, we were leaning towards that very decision, anyway.

I find myself wondering what a daughter of ours would look like, what she would be interested in, would she and I have a close relationship or an adversarial one. I find myself feeling like I want to be pregnant again, which is the stupidest part of all, because I HATED being pregnant. You know that feeling you get when you're getting sick? You don't have a sore throat or anything yet, you just feel yucky? That's how I felt the entire pregnancy. Add in morning sickness the first 14 weeks, and shortness of breath for most of the rest of it, and I was not happy for nine months. And I suspect, although he's never said anything, that Darrel wasn't really happy, either, because I'm sure I was a tiny bit difficult to be around sometimes.

So, why these twinges of wanting another baby? I don't know why, but please, God, make them stop!!

Wednesday, September 8, 2010

Red-shirting kindergarteners?

So, this article, appeared earlier this week:

It's really got me thinking more about this whole parenting thing in general, and my own child in particular. Frank's birthday is September 20th. The cutoff date in our district is October 1st. Most people in this position, especially with a boy, would "hold back" their child until the September he turns six. We plan on sending him when he turns five, next year. The amount of crap we are getting for this decision is incredible. Everyone from my mother ("This is one of the worst possible educational decisions you could make for him. He will struggle for his entire educational career.") to coworkers ("I held back my son. It was the right decision. I'd do it again.") has an opinion on my son's education, or rather, when that education will officially start.

You're really damned if you do, and damned if you don't when it comes to parenting, I've found. It starts before birth, even: What kind of birth are you planning? You do have a birth plan, right? And, then, the birth itself: Really, you had a c-section? There are entirely too many c-sections in this country. They're not neccessary. Our ancestors gave birth in between working crops and humanity has turned out just fine. Then: What do you mean you're not breastfeeding??? Breast is best! It'll keep your kid from having ear infections! And so on.

I was prepared for a lot of things when I decided I wanted children. I was prepared to lose a lot of sleep, for starters, although, as an insomniac, I haven't noticed much difference from before baby to after. I was prepared to constantly worry about the child. I even knew there'd be a constant roller coaster of emotions that went with motherhood. (When you work in a field that is dominated by women, you learn stuff just by listening at the lunch table.)

I never thought I'd feel like I have to explain every decision I make for my child to people in my life who are not my child's other parent. No, I should not feel like I have to explain things to others, but in real life, I am incredibly nonconfrontational, and telling people to butt out is still a skill I have not yet developed fully.

As for the future kindergartener? Well, my husband and I have taken into account everything about him, his personality, his skills, and his physical development. The only thing that concerns me is the kids who will be a year or sometimes more older than he will be. My concern is that his behavior, which should be age-appropriate for chronological age five years zero months will look not as good compared to age appropriate behavior displayed by kids who are chronological age six years and zero months.

First Day of Pre-K

Summer is over. Mr "I don't like change" had been visiting his pre-k class a few times over the last couple of weeks, and told me the other day, "You know, Mommy, pre-k is nice, but I really like my preschool class better." (Nice place to visit but I wouldn't want to live there?)

So, I didn't really have a huge amount of optimism for how today, the first full day of pre-k, would go. Call it a self-fullfilling prophecy, but it went pretty much as I had expected. He sobbed at home to each of us in turn, telling us how much he liked his preschool class and that he really didn't want to go to pre-k. No matter how much we tried to rationalize ("You didn't like preschool when you started last year! Mommy was nervous on her first day of school last week, and it's fine now! Daddy was nervous on his first day of his new job last week, and it's fine now!"), he's three going on four, and therefore incapable of rational thought.

I had to carry him into the building, and hold him, as he sobbed that he really didn't want to be there, and could I please not leave him there. I left to the sound of him sobbing, which, may I tell you, is not an awesome way to start one's day. But when I called later, around 9:30am, I discovered that he only cried for about five minutes after I left, and he was thrilled because he was the Helper of the Day. (All we have been able to get as explanation for what this entails is, "I held the door open for everyone!" Apparently this is a Very Big Deal when you are four, or nearly so.)

Anyway, he greeted me when I arrived to pick him up with, "I had a super day!" However, "Tomorrow I would really like to go back to my other class." Um, I hate to tell you, kid, but that is not how this whole school thing works...

Monday, August 2, 2010

Ladies and Gentlemen...

He ate a bite of mac and cheese, chewed, and swallowed it, all without crying or fussing.

I feel like I won the NY Marathon.

Sunday, August 1, 2010

Good News and Bad News

Good news: He's taking mac and cheese more easily. He even chewed it instead of swallowed it whole tonight.

Bad news: He sobs more when Darrel's home and we do feeding than when it's just the two of us. I think he knows how much the screaming and crying sets Darrel off.

Good news: He's been (pee) accident-free at home, five days now?

Bad news: We sent him to daycare in underwear both days last week. What. A. Fiasco. He still refuses to use the potty there, and we cannot figure out why. He's willingly used the toilets at Target, three different diners, two different doctors' offices, my mother's, and a mechanic's, but he won't use the potty in the building he's gone to since he was five months old.

Good news: He hasn't soiled any underwear since Thursday.

Bad News: He hasn't pooped at all since Friday.

I blame this child for all my grey hairs.

Tuesday, July 27, 2010

I feel like I am at war.

We keep Frank in underwear so long as we're home and he's awake. He gets a pullup for naptime and bedtime. Yesterday he kept his underwear dry all day long (yay!) but his naptime pullup was soaked through when he got up after an hour and a half (boo!). Today, he was dry all day long...until 5:45pm. Between 5:45pm and when Darrel got home at about 7pm, he wet or soiled five PAIRS of underwear. FIVE. The last pair was so heinous, I threw it out. I'm sorry, honey, poop is the one bodily thing I simply cannot handle without retching. A lot. I can (and have) catch vomit with my bare hands and not blink an eyelash, but I CANNOT handle poop. I could not handle it when he was a newborn, and now that there's more of it (and more stink to it), it's even worse.

Anyway, so we were on pair number five when I started yelling. Now, I worry about being a yeller, but I don't actually think I do it very often. For one thing, it seems to really get his attention. For another, he always sobs hysterically when I do yell at him. Once I'd calmed down, I apologized to him for yelling, cuddled him, and told him that even if I was angry and yelling, I still loved him, that I would always love him no matter what happened, etc.

We are both firmly convinced that he has the physical knowledge of when he needs to go, before he actually goes. He has tells, and he's a lousy liar, so when you ask him if he has to go poop, he gets a panicked look on his fac and says, "No!" I've tried putting him on the potty when I see this, but...yes, you guessed it, he holds it in until I take him off the potty and put pants on him!!! No one can tell me this kid does not have bowel control, that's for sure. I mean, not within the last week or so, but I've sat him on the toilet for a half hour at a time, and he holds it in until he's got pants on.

I make him help me clean his underwear when he wets or soils it, as per the suggestion of a college friend, I make him stand there and watch, him still in the wet-soiled pants, both of us silent, while I clean the mess from the floor, we've had stickers, we've had prizes, we've praised lavishly when he pees in the potty, we've called Grandma when there's a Big Potty Milestone, we've talked about ALL of his friends at school use the potty ful time...nothing seems to work.

So, after some quick private discussion, Darrel came up with an ultimatum: Tomorrow, the kid has to put some poop in the potty, or the TV gets turned off. Frabk looked horrified at this, and said he'd "try"...which he's been promising for months now, so I will believe it when I see it.

If I were a drinker, I would be well on my way to drunken bliss right now, that's how emotionally exhausting the day has been.

The only bright spot is, after only a couple of days of trying it, he seems somewhat intrigued by macaroni and cheese. He's thrown nowhere near the fits over this than he has for other foods. He loves salty foods, so we are hoping he takes to mac and cheese. *crosses fingers* It would make my month if we added a new food to his diet, even if it's not a fruit or veggie.

Thursday, July 22, 2010

1000 Books, 1000 miles

I read and post on a messageboard. One of the other posters on that board, C, is a teacher in Missouri. They had a flood at her school, and many of thier books were destroyed. I told her I'd ask around, and see if anyone here had any children's books they wanted to get rid of. I posted a plea for books on my school district's email board, and got a response back: a teacher at the middle school had had a book drive, the places she was supposed to donate the books to fell through, and did my friend in Missouri want about 1000 children's books?

The result? 1000 Books, 1000 Miles: The Project.

As of now, we still have some parts of the journey between Philly and eastern Ohio that are not yet covered. Once we get all legs of the journey covered, the books will start making their way from Somerset County, NJ, to Missouri.

Please repost to your blogs/Facebook pages/Twitter feed, etc. Even if you can only do a couple of miles, that will help tremendously. Many thanks!

Monday, July 12, 2010


We had a family party Saturday. It was at Darrel's aunt and uncle's house, which is about ten minutes from here. I brought fish sticks for Frank's dinner, but nothing else, because I figured there'd be plenty of crackers or chips he'd be willing to eat. Well, I wasn't letting him eat potato chips- he's been having diarrhea again, and I think the oil in the chips makes it worse- but I thought there'd be enough other things he could eat that it wouldn't be an issue.

Well, it was an issue. Yes, they had Doritoes, but they didn't have the exact kind of Doritoes (Cool Ranch) that Darrel gets, so they looked different, so Frank wouldn't eat them. They had crackers but they weren't a kind Frank had ever eaten before, so he wouldn't eat them. They did have potato chips, but, again, I wasn't letting him eat those. I wanted to cry. Aunt had a box of Wheat Thins, so after Frank finished his fish sticks (comment from Aunt: "Oh, you're moving up in the world, Frank- eating more than just chicken nuggets now!"), I let him have all the Wheat Thins he wanted to have.

For dinner, they had burgers and dogs, mac and cheese, potato salad, etc- typical summer grill party type food. Frank doesn't eat any of those kinds of things. (Well, he couldn't eat potato salad or macaroni salad, because they have mayo in them, and mayo is made from eggs, which he's still allergic to.) There was another three-year-old there. not only was this kid fully potty trained, he played in the pool (which Frank doesn't like), and he ate whatever his parents put in front of him.

It's hard for me to decide what frustrates me the most- that my son won't eat many different types of foods, that he still is not nearly potty trained, that he doesn't want to do normal stuff like run through a sprinkler or play in a pool, fighting with insurance, or that I feel like I always have to make excuses for him to people who think we are entirely too permissive and let our kid run his life. I am starting to feel really drained by dealing with all this, and I feel sometimes like I just cannot handle it anymore. Darrel is getting so annoyed again about Frank's food issues, and I am unsure whether playing good cop/bad cop is a good thing, and will get Frank to try different things, or whether it is damaging to him. I'm just so confused and angry and frustrated- I was emotionally prepared for my kid to have lung problems, or immune problems, but never in my life did I even think there was a possibility he'd have a disorder that most of society has never heard of, and many who have heard of think it's BS.

Friday, June 25, 2010

Steel Magnolias

I'm watching this movie, which I love and hadn't watched in...well, years. It's still near the beginning, just after when Shelby (Julia Roberst) starts to have insulin shock at the beauty parlor. While I have always cried at various parts in this movie, this is the first tiem I was moved to tears by this scene, specifically by Sally Fields' character, Shelby's mother, M'Lynn. (I'm not sure if I spelled the name right, but anyway.)


When people talk about this movie, I've never heard them talk about Shelby as having grown up as a special needs child, with the obviously serious Type I diabetes. Her diabetes is so serious, the doctor has told her that pregnancy would endanger her health, a fact that is later proven to be true, when Shelby's kidneys fail after she has her son.

M'Lynn, as shown in this scene, obviously has spent Shelby's life being the pointman when it comes to her daughter's health. When Dolly Parton's character first realizes that Shelby is having a problem, she immediately calls for M'Lynn, who comes over to Shelby and begins to talk her through the episode, while their friends get orange juice and candy. In this dialogue between the two, you can see the long history they have- Shelby with her health issues, and fighting so desparately to be normal, and M'Lynn leading the charge in that fight.

It's very interesting- most people who look at Frank would never realize he's a special needs child, and, indeed, as compared to a lot of kids with SPD, he's really quite well off. The movie has made me think- how many kids do we see every day while out and about look "normal", but really have special needs?

Tuesday, June 22, 2010

Still got...something!

He still has the stomach virus, or whatever this is. Today is Tuesday. Thursday will be two weeks. The doctor told me when I brought him last week that if he was not better by this Wednesday, to bring him back in. Guess what we're doing tomorrow morning.

He tracked poop all over his bedroom this evening.

I sure hope I laugh about this one day, because I am nowhere near laughing about this now.

Monday, June 21, 2010


That'd be d for dentist.

The good news is, he has no cavities. The bad news is, he sobbed and screamed throughout the entire thing. "Please stop! Please don't do that! Please stop!!!" It broke my heart having to lie there in the chair, with him on top of me, and hold him down, with my left arm across his chest and my right hand clamped down on his forehead. I'm amazed I didn't cry, to be honest.

He had some iron deposits along the front of his front bottom teeth, so she had to use the scraper thingie. His screams during this part were bloodcurdling. I can't really blame him- I hate that part, too!

I really wish these things were easier for him. I wish I could make it all better.

By the time I got him to daycare, he was pretty much okay, though, and ready to show off the prizes and stickers he got at the dentist's office. I guess it's good he seems to be pretty resilient in that regard- once the sensory assault is over, he usually snaps back to normal pretty easily.

He was pleased to hear we wouldn't have to do this again until after Christmas, "After Santa comes and brings me presents. That's a long time away, isn't it, Mommy?"

Saturday, June 19, 2010


I work in a high school. Last night was Graduation. The graduates sit on the stage, in rows, girls on one side and boys on the other. When we interpret for Graduation, we need six people, always- two in front, for the audience, and two on the girls' side, facing the graduates, and two on the boys' side, also facing the graduates. Last night, I was backstage, on the boys' side, with coworker P. One deaf boy who graduted, J, I have known since he was about five years old. I interpreted for him at church and Sunday School for many years. His dad does contracting work for us sometimes, too.

So, at practice yesterday morning, J told me, I thought, that he wanted "an interpreter" to stand near the principal when they were awarding diplomas- he wanted the interpreter to let him and the other boys know when their names were said, so they would know when to start walking. I told him, "Okay, when Mrs P and I get here tonight, we'll figure out who's doing what, and it'll be taken care of."

"No," J said. "I want you to do it. You interpreted church, my baptism, confirmation, everything all those years, I've known you since I was five, I want you to do it."

I was a bit taken aback. J typically is not what you'd call a sentimental kid. He's a nice kid, to be sure, but he has Some Issues that I won't go into here, and high school for him has, on more than one occasion, been a rough road. But I was very touched, and told him, "Okay, I'll do it."

And I did. And it went well, the whole ceremony...even though this class (hearing and deaf) is, overall, kind of rowdy, so much so that for the first time in my memory, the principal assigned staff members to sit backstage to keep an eye on them. I've grown fond of some of the hearing kids, too, as always happens, and made sure to wish them luck and all that as well.

I made sure that J's parents took a picture of me with him after Graduation was all done. They promised they'd email it to me. I'm going to miss that kid.

Monday, June 14, 2010


Frank has an appointment with his dentist next week. I am already dreading it. I am not the calmest dental patient you will ever meet, and bringing him to the dentist was worse when I brought him for the first time last November, because I had to pretend to be calm and happy. (At least with my dentist, I can let the fear fly!)

Oh, Lord, please let him not have any cavities. If he does, he is going to need to be sedated for the fillings, because I do not think I have enough physical and emotional strength to hold him down while they shoot Novacain into him and then drill his tooth.

Sunday, June 6, 2010

Walk to Defeat ALS

My coworker, P, and I walked today in Saddle Brook County Park. It was sketchy at first as to whether we'd even walk today, because there were predictions for thunderstorms all weekend. Like always, though, the weathermen were wrong- it was hot, and cloudy, and muggy, but no storms.

Together P and I raised $790. Nowhere near last year's high of roughly $1300, but it was still a pretty good amount. We did well on the walk, too- we walked the 5K in under an hour, and were one of the first groups to finish.

While we were eating and chatting with some other groups, a little girl wandered around our table. When I say little, I mean that- she was probably about 14 or 15 months old, old enough to walk, but not old enough to talk. P and I looked around and asked her where her mommy was. She looked around, chewed on the cookie she was carrying, and looked around again. P said, "You keep an eye on her- I'll get a cop." The little girl chose that moment to wander towards the swings, so I followed her.

She poked at the swings and I asked her again, "Where's your mommy? Show me your mommy." She looked around, and this time began to give me what we in my family call "boo-boo lip"- you know, when the lower lip starts quivering, just before they start crying? So I picked her up and started to the walk and jiggle- bounced her up and down on my hip while crooning, "It'll be okay, we'll find mommy." It was at this moment that P came back with the cop. The little girl burst into tears as he came close- he didn't seem at all surprised and told me, "It's the uniform- you keep holding her and follow me." So I did.

He walked all over the playground area, with me right behind him, asking different groups if they knew who she was. No one did for several minutes, and then a woman who looked to be about 50 said, "Oh, my God!" She came running over to us, and the little girl, who was crying by that point, reached her arms out to the woman. The woman babbled to the cop, "She was with her mom, they were over by the face-painting, oh my God!" The girl definitely knew her- as I said, she reached out to her, and stopped crying immediately as the woman took her- so I had no problem handing her over to her. The cop and the woman thanked me and P for our help, and he stayed to ask her some questions.

I really try not to judge people...but, okay, I will. I mean, when I am out anywhere in public with Frank, I am a lunatic. When I lose sight of him for two seconds on a playground, I immediately begin to freak out. When we go to Target, or the Library, he has to hold my hand or hold onto the shopping cart; when he was younger, he was in a stroller or the shopping cart.

Based on where the face painting was, as compared to where the playground was, the girl had to have wandered by herself for several minutes. There was a PA system set up- if a mother was looking for her child, we would have heard an announcement. How do you not keep track of a child that tiny in such a huge crowd for long enough for the kid to wander off that far??

I think the whole thing disturbed me so much (I mean, anyone could have picked that girl up and wandered off with her in that crowd) because she had such beautiful blue eyes, exactly like Niece #3, Little Brother's daughter. I keep picturing N#3 in that kind of situation.

In other news, Frank peed in the potty enough, and earned enough stickers on his chart, to win one of his Big Prizes this evening. He picked a Cars...thing. Some assembly required. Ugh. He still hasn't pooed in a potty yet, and now I hear he's giving them a hard time about sitting on the potty at school again. *sigh*

Wednesday, June 2, 2010

Buzz cut!

We went for a haircut today. Haircuts for Frank consist of advanced warnings, beginning two days in advance: "Wednesday after school, we are going to get a haircut."

"But I don't like haircuts!"

"I know, but it needs to be done."

I decided that, it being hot, and because the poor child sadly has inherited my thin, fine hair, which makes it impossible to keep neat-looking, he was going to get a buzz cut. *waits for the groans from all the other SPD mommies* Yes, kids, he was going to get a cut that would require use of the electric trimmer for the entire haircut.

Frank, as noted above, does not like haircuts. He cringes when the stylist uses the electric trimmer (the buzzer, he calls it) to do his sideburns. (He has gotten pretty good with the scissors portion of the program, though- he sits there with a suffering in silence look on his face the whole time, but he no longer sobs hysterically through the whole thing like he used to.)

So, we got to the place we like to go. They are a children's haircut place, a chain, and they're walk-in. Sometimes we can go right in, and sometimes it's an hour wait. I prefer about 20 minutes or so- it's enough time for Frank to get himself accilmated to the sounds, smells, etc of the place, but not so long that he starts getting squirrely. When we got there today, they informed me it'd be about 15 minutes. Awesome. Cars was on the flatscreen, so all was right with the world. He sat on my lap, watched the movie, and I did squeezes on his body, head, and scratched his head a lot.

30 minutes later (yes, he was in fact getting squirrely. Lovely.) we got ushered in. The stylist has done his hair several times before, so she's somewhat familiar with his issues. She also speaks with a very sptrong Spanish accent, so when she talks to him, he always looks at me for translation. I told her that today I wanted a buzz cut, and pointed out another kid who was just leaving. "Buzzed, but not too short- like that kid."

Frank immediately piped up with something that had been on his mind for the last day or so, since I'd told him he'd be getting a buzz cut: "I don't want it to look like Daddy's!" The stylist has never met my husband, so she looked at me. "My husband has no hair," I told her. She stifled a laugh and said, "Okay, honey, it won't look like Daddy's. Promise!"

He did GREAT! I mean, he cringed a lot, and looked at one point like he was maybe getting a little teary-eyed, but my little man soldiered on and got himself through it with flying colors. The stylist gave him a couple of handheld toys to play with, and she played the dumb little movie on the screen by her station they always play for the kids during a haircut, and he made a huge effort to focus on the movie and the toys. I was really proud of him, and told him so. He's not crazy about the haircut, and told me that. I smiled and said, "I really like it, but if you still don't like it by the time we come here next time, you won't get it cut this short again."

As we always do, we walked to Target afterwards and I let him pick a small prize out. He picked out this obnoxious Cars Chick Hicks thing that makes a lot of noise, and is very repetitive. He loves it. I already want to throw it in the backyard- maybe it'll keep the bears away! (For a kid for whom loud sudden noises can be upsetting sometimes, he sure does like the noisiest, most obnoxious toys!)

Tuesday, June 1, 2010

I am not ready for this.

Okay, he's three.

And today he asked me, on the way into daycare, "So, Mommy, how did the baby get into Aunt M's tummy?" (Aunt M is my brother's wife. She's pregnant. I told Frank last week.)

I said "after hemming and hawing for a few seconds, "We'll talk about it after school, honey. It's a little too complicated to talk about now." He cheerfully accepted that, buying me some time. (I also prayed he'd actually forget he asked the question.)

When I got to school, I asked a whole bunch of coworkers, experienced parents all, what exactly you tell a three-year-old who asks that question. Consensus overwhelmingly went with, "God did it."

So, when I picked him up after school, and he remembered to ask again, I was ready. "God put the baby there, honey," I told him. Much to my surprise, he actually accepted that without asking anymore questions. Bullet dodged for today!

Next time he asks the Question, though, my answer is going to be, "Go ask Daddy."

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. ;)

Wednesday, April 28, 2010

Differing views

My husband thinks I worry too much. I worry about Frank's nutrition. (Well, obsess on it is probably slightly more accurate.) I worry about him wearing the appropriate coat for the weather...even though time and again he has proven to me that he is in fact far warmer blooded than I am in situations where I've been huddled up in a coat and he's been gleefully running around in jeans and a long-sleeved t-shirt. (I believe this is a male thing and not a sensory thing, because my husband, my brother, and...well, yeah, every man I know, is always warmer than I am.) Frank also flat-out refuses to use a blanket at night to sleep, even in the depths of winter. I worry about what will happen if I lose against my insurance company and we can't get him OT regularly anymore. I also worry about kindergarten. Should I ask for an IEP? 504 Plan? Wait and see? Should we start him when he's five (his birthday is in September) or when he's six? What food will he be eating by then? Will he fit in, or will his classmates make fun of him for his quirks?

I should remind you that the boy in question is three, and will be four in September...which reminds me of another worry: what will happen if he doesn't potty train by then? Will he be able to still go into pre-K? And what if he's not toilet trained by age five- will they give us a hard time about kindergarten?

My husband, on the other hand, doesn't seem at all worried about any of these things. He's sure that time will sort through all these things. He thinks that I worry too much about how he'll be in kindergarten: "It's not like he's got the huge body problems that some kids with the disorder have." No, but we don't know what'll happen once he has to sit in one chair a lot during the day.

How about the rest of you with kids who have special needs- do you find that fathers have different (lower) levels of worry than mothers do?

Monday, April 26, 2010


The daycare Frank attends provides lunch each day as part of tuition, something we have seldom taken advantage of because of Frank's SPD. Now, however, he eats chicken fingers, and I am determined he will eat the pizza. (He eats pizza bagel here at home.) So, today was pizza day at daycare, and on my lunch period, which blessedly coincides with his, I went over to daycare to put a small piece of pizza in his mouth.

It went better than I expected- he didn't scream bloody murder. He did cry a lot, though, and mash his lips together. I had him touch the piece, then I touched the piece to his lips, and then I got it in his mouth. He held it there, with his mouth gaping open, as he does whenever he has something new- to have it touch as little of his mouth cavity as possible, I think. I let him keep it there for about 30 seconds, and then, time being what it was, I okayed him spitting it out into a napkin. (Usually, we tell him the new food has to stay in his mouth until he chews and swallows it- normally, that takes about 15-20 minutes, involves much drooling, and he cries throughout, and I didn't feel like dealing with that in the limited time I had before my next class.

I told Darrel about it this evening, and we've decided to get more aggressive with food. Much of SPD, his OT told me, can become behavioral rather than actual physical sensation- he's sure it'll be horrible, and it therefore is. He eats pizza bagel here at home, he eats fish sticks here at home, he eats chicken nuggets here at home. Well, he now eats chicken fingers almost anywhere we go out to eat, which is nice, but I want to expand his dining out palate now.

We are still spinning our wheels with toileting- no further successes since that one time. *sigh*

Thursday, April 22, 2010

Insurance sucks and blows at the same time.

So, every three months for the last two years, I've had to call my insurance company up and harrass them into approving another 12 visits of OT for Frank. No, the SPD has not been cured. Yes, he still needs OT. Well, a few weeks ago I got a letter from the Evil Empire saying that they are denying payment for any further visits because, essentially, my insurace plan does not cover OT services for developmental issues unless the issue comes from an accident or illness. In other words, if Frank got SPD from being in a car accident, we'd be golden. A disorder he's had since birth? Yeah, not so much.

I called and asked, politely, WTF was this about??? The first woman I spoke with there said that maybe it was because of the code the provider entered in when they sent the paperwork to insurance, and to resubmit everything. I called the provider and relayed this info.

I would like to take this moment to say that A, the woman who handles all this crap for the provider, is a saint. Anyone who can deal with Evil Empires of all sizes all day long and still smile has to be a saint. A thought it was rather odd, especially since she'd used all the codes she'd been using for the last two years, but resubmitted it. I called today to find out if she'd heard anything, and as it happens, they'd just gotten info back from the Evil Empire today- denied.

So I called the Evil Empire. Representative number 1, after listening to my story, thought it was odd, too. She passed me along to Claims- "Maybe they can figure out what's going on." Claims lady, after looking over my file, said my plan didn't cover this type of OT.

"But you've been covering it for two years!" I said.

"Did your plan change recently?"

"Not that I'm aware of," I snapped.

She passed me along to Appeals, which is the next step. The voicemail at Appeals said that their office hours are 9-5, Monday-Friday, and to leave a detailed message, along with my ID number, and my call would be returned as soon as possible. I looked at my watch while I waited for the beep: 4:15pm. Last tiem I checked, that is 45 minutes before 5pm, which means they should have been answering their freaking phone.

I left the required detailed message, hung up, went to get my kid, bring him home, and told the latest chapter to my husband...and ended up crying out of frustration. (Side note: I am a cryer. I cry with sadness, happiness, at sappy movies, while reading the last Harry Potter book, and with rage and frustration. Poor Darrel sometimes is not quite sure what to make of this.)

They better get back to me and get this sorted out. It's one thing for them to try and screw with me and my health (which they have done in the past, and I almost died as a result), but Do. Not. Screw. With. My. Kid!

In the meantime, since we cannot afford to pay for OT ourselves, we've suspended it until we do get it sorted out. Which sucks, because he really needs it, and I need to talk to D, the OT, about things that come up with the kid.

Monday, April 19, 2010

Cape May weekend

We spend a weekend in Cape May, NJ every spring. Before Frank was born, Darrel and I stayed at a B&B, the Victorian Lace Inn. The same people who own the Inn also own a small condo building across the street (two condos), so we stay there now that we have Frank. It has two bedrooms, and basically anything we'd need. Last year, Frank did okay with walking across the sand at first, but tired very quickly, and he had a very hard time sleeping because it wasn't his room at home.

This year, there was some improvement. He fell asleep very easily, although he was awake between five and six am each morning. I suspect that's because the blinds there let in far more light than the blinds in his room at home. Also, there's no clock in the room there, something we'll have to remember for future vacations- we've been showing him different times on his clock, and I have a picture of his clock taped below the real clock, showing 7:30, to show him when is a good time to call out to us he's ready to wake up. (If he wakes up before that, he's supposed to play quietly in his room until then, which he usually does fairly well.) Darrel had moved the mattress from the twin bed in Frank's room to the floor, too, which helped Frank to feel more comfortable, too.

We weren't terribly organized about getting him on the potty, so there were no further potty successes. However, he had a good time playing in the sand. April is far too cold in NJ to go swimming, but we brought his beach toys, and he spent well over an hour building a volcano with us and pouring water over it. He didn't get tired of walking on the sand until we were done and walking back, but I think even a perfectly normal three-year-old would have tired somewhat at that point, too.

We ate out a few times, and ordered chicken fingers at each place for him, and he actually ate those pretty well, too. Usually he tends to become more regimented on trips, and will only eat something from "our" kitchen, so this was a pleasure for both of us to see. (He didn't eat the leftovers, though- we always get doggie bags for whatever he doesn't finish- but you can't have everything, right?)

He was quite relieved to get home and into his own bathtub and bed last night, and fell asleep easily. He talks about the trip like he had a good time, though, which is very different from our vacation in Delaware last summer- the whole time, he kept asking when we were going home, and afterwards, if someone asked him if he liked the beach house, and did he have fun, he always said no. With this past weekend's trip, though, when his daycare teachers asked him this morning if it was fun, he beamed and said yes...which warmed his mommy's heart.

Thursday, April 15, 2010

Ladies and gentlemen... long last, we have pee pee in the potty! And there was much rejoicing and celebration throughout the land.

This evening, Darrel had to go out, and I did all the bath and bedtime stuff. When Frank and i came upstairs, I told him to disrobe and put his clothing in the hamper and his diaper in the garbage, which he does every night. I cleaned his rear off, and then we went into the bathroom to start his bath. I turned the water on and said, "Okay, while we're waiting, let's sit on the potty for a minute." He sat there for about two minutes, then he got up and said, "I need to flush." He enjoys flushing the toilet, even when there's nothing in there, so I looked in the bowl, and this time, the water was indeed a bit yellow. Just to be sure, I checked the underside of the potty seat, and it wa sin fact wet! So, I asked, with a big grin on my face, "Did you go pee pee?" he shrugged and nodded and said, "Yeah, I guess so."

I promptly began to celebrate. I congratulated him and told him how proud I was and let him flush. I also told him he could pick a toy out of his prize bucket as soon as he was done with his bath. His face lit up- he's been looking longingly at those little prizes in the bucket for months! I called Darrel and told him, and called my mother in law and left her a message. (After he was in bed, I called my mother...I knew I'd be on the phone with her for a while.) After the bath, Frank picked a prize out, and he took it to bed with him, too. He looked longingly at his Big Prize, a Thomas thing that's sitting on the bathroom counter, and asked if he could have that, and I said, "No, honey, remember? That's for when you use the potty all the time for pee pee and poo poo, and when you wear big boy underwear all the time." He thought it over, and then said, "Okay, Mommy, I'll do that."

While I am not delusional enough to think that it's really going to be that easy, I am thrilled we have a start. Happy belated birthday present to me!! :)

Tuesday, April 13, 2010

And the results are in...

He sat just fine on the school potty today, after I brought the second potty seat from home to use there. "He sat for a long time, too!" the teacher told me. Mommy for the win! (He hasn't done anything in the potty yet, but hey, it's something.)

I do realize this means we'll eventually have to wean him away from using the Cars potty seat, but I'll worry about that after he's potty trained...

Monday, April 12, 2010

Toilet training

We're on that again. I spent a lot of the last few days looking at sites for parents of SPD kids, and posted a query on a couple of them, asking for advice regarding potty training. I got a variety of responses, most of them basically saying, "Yeah, good luck with that- my kid is 4/5/6 and we're still working on it."

That's so not what I wanted to hear. I don't care about night time dryness right now, I really don't. But every kid in his daycare class, even the ones younger than he is, are using the potty at least some of the time. What makes it a bit harder on me, I think, is the fact that he otherwise presents as a "normal" kid- as in, other people looking at him and wondering why this normal kid is still in diapers. Yes, he is only three and a half, but he goes from preschool into pre-K this fall, and I don't think they let the kids go to pre-K until they're potty trained. Also, next March, when we're looking at kindergarten screening, it'll go worse for us/him if he's not yet trained, as far as him starting the September he turns five instead of the September he turns six. (That's a whole different issue, best covered in another post.)

He now sits on the potty at home for us just fine, although he hasn't done anything in the potty. He fights them on it at school. I took him to the potty at school today, when I picked him up, just before we left, to see what he'd do, and he fought me, too. Tomorrow I am bringing the potty seat we use here (we have two identical ones) to see if that helps with the screaming bloody murder. When I asked him what he thought, he seemed to like the idea- he said the school potty is "cold and hard", while his potty seat is "soft, but still a little cold". Yes, I do realize I am setting us up for him refusing to sit on any potty that doesn't have the Cars theme on it, but I'd rather him at least try to sit on the potty without incident right now.

Just when I think things are really starting to improve for him (and us), we encounter something like this to make me wonder why. Why does he have to have this thing that will color everything he will do his entire life? Why does it have to be something nobody outside the autism community has ever heard of, and we have to explain and re-explain every damn day? I sometimes finding myself wishing he had something quantifiable. I mean, my lung and immune issues, you can look at a CT scan and bloodwork and see what a mess I am. SPD, though...there's no test that can prove to people, "See? It's real!" That, I think, might be the hardest part.

Sunday, April 11, 2010

One step forward, two steps back?

Frank refused to eat the leftovers from last night's chicken fingers. Not only did he refuse them, he pushed the plate away and dissolved into a pool of hysterics. Darrel and I have learned that if we try and calm him down, that only feeds the beast, so we sat there and chatted lightly while eating our lunches, raising our voices to be heard, about other topics, while Frank moaned and wailed and writhed around in anguish on the kitchen floor.

I know his cranky mood was probably something of a "hangover", if you will, from yesterday. He slept GREAT- we heard NOTHING from him until damn near 8am- so we can't blame the mood on not enough sleep. He napped, too, for nearly two hours. (When I say napped, I mean he was in his room, with the light off, for that time. I think he actually sleeps for about an hour to an hour and a half.)

However, after the great day he had yesterday, his mood was a big downer for me. Is this always going to happen with him??

I went out and pulled weeds for about an hour while he napped. Gardening, sinking my hands into soil, always makes me feel better, about pretty much anything.

I wish I could solve his problems that easily.

Saturday, April 10, 2010

Long day

Today was a day that had much potential for sensory overload and meltdown:

1. Haircut- 10am
2. Birthday party- 2-3:30pm; Frank usually naps from about 1-3pm, so this basically was getting him up right in the middle of his normal nap time.
3. Dinner at Charlie Brown's with Mommy and Daddy

Aside from the last 20 minutes at Charlie Brown's, when he began acting like the three-year-old that he is, he handled everything beautifully!

Haircuts tend to be difficult for any child with SPD. There's the unfamiliar sounds of a salon (hair dryer, other kids, a lot of people talking, clippers). There's the smells (shampoos, conditioners, styling products). There's the sights (usually bright, so the stylists can, you know, see what they're doing). There's the feel of it (Think about how it feels to you when a tiny bit of hair gets stuck under your shirt. Now magnify that feeling.) and even the taste (hair in your mouth, anyone?).

When I take Frank for a haircut, I take him to a place that is for kids. It's a walk-in place, which means, depending upon the day and time we get there, we can either be seen right away, or we could be there 45 minutes, or anywhere in between. I personally prefer something of a wait- it gives Frank time to adjust himself to the things going on there, and gives us time to do deep pressure before he gets called. Today the wait was 30 minutes, which was good- he had time to roam around, watch a little of the movie they showed, and sit on my lap for some squeezes, both on his abdomen and his head.

He really did a great job! Part of the reason for his success was, when I told the woman who was cutting his hair that he had SPD, she seemed to know what I was talking about, and, without me even asking, she told him and showed him what was going to happen next at each step. "(Okay, Frank, I'm going to spray some water on your hair. Ready?" "Now I'm going to use the scissors. See them?" "Okay, now I'm going to use the clippers here-" touches each sideburn "- and here." touches back of neck)

We got back from the haircut, lollipop and prize in hand, watched a little TV, and then I put him in for an early nap, at noon. He sang to himself for a good 45 minutes before sleeping. At 1:30pm, I got him up, changed his diaper, and we went to the birthday party. The party was at New York Sports Club, about a 20 minute drive from here.

Birthday parties for any small child can be sketchy, and for children with SPD, they have the potential to be so much worse. Just think about the other little kids, running around, screaming with excitement, running into each other, the food, etc. For Frank, they're a crapshoot- depending upon the type of venue, how much sleep he's had, the phase of the moon (okay, maybe not that, but I swear sometimes it is), he could either love a party or sob miserably on my shoulder for most of it.

Today was a good day. They played with a parachute, and he even went under it with all the other kids (and me, but I was not the only parent dragged under with her kid). They then played with a bunch of large exercise balls, and he had a wonderful time, running around, pushing a ball that was bigger than he is. Then we all paraded into another room for food. As I do pretty much anywhere, I'd brought a few selections of foods he likes. I didn't know what food was being served, so I brought some different things to try to match up with what the rest of the kids were eating as much as possible. Today, blessedly, they served potato chips, pretzels, tortilla chips, and then cake. Frank loves crunchy things, especially chips and pretzels, so he shoveled the food in like everyone else.

The birthday boy, like Frank, also has food allergies, and the mother had made a batch of cupcakes that were egg and milk free just to make sure Frank could have some cake. (She let her son, also allergic to milk, eat birthday cake, but she knows we're really strict about Frank having any access to food he's allergic to.) It was really very sweet, and I thanked her profusely. Frank, of course, was not going to eat the cupcake, so I told her he'd pigged out on the chips, was totally full, and we'd bring the cupcake home for him to have after dinner tonight.

On the way to birthday parties, I always rehearse things with Frank. "Okay, when we're at the party, if someone asks you if you want some cake, what do you say?"

"No, thank you."

"What if they can't hear you, and they put the cake on your plate, anyway? Do you cry or push it away?"

"No, I leave it there and eat my food."

So, today, he had the cupcake sitting next to him, and one of the employees working the party who was helping to serve the cake to the kids put a slice of cake down at Frank's place. Frank touched his arm and said, "No, thank you. I don't eat cake." The guy looked surprised and glanced at me. I explained, "He has food allergies." The poor guy was so apologetic, and I told him not to worry about it. Well, the food allergy thing is not a lie, and sometimes it is easier just saying that than explaining SPD to someone I'll probably never see again.

Okay, the party was oer, and we came home, got my husband, and went to dinner. Like most parents of young children, when we go eat anywhere, we eat early, usually arriving between 4:30 and 5pm. We also bring Frank's food, and about a thousand small toys for him to occupy himself with. He got an immense goodie bag from the party, so he really played with those items most of dinner. He also, for the first time, ordered his own food from the waiter: "I want chicken fingers and French Fries, and I want ketchup because I need it for the French Fries. Oh, and I want water to drink!" looks at Mommy's face "Please!" Sometimes, he'll eat the chicken fingers in a given extablishment, and sometimes he won't. Tonight, he ate one and one half chicken fingers, as well as about a thousand fries, so he did pretty well with the eating. The last 20 minutes or so, he got very squirmy, and I took him for a short walk, and, when we got the check, I packed him up and took him and the bag out to the car and got him strapped in while Darrel paid for dinner.

When we got home, we changed him and let him watch Dora for a half hour, and he is now in bed and silent. I expect him to sleep very well tonight.

I sometimes get very pessimistic about what's in store for him down the road, especially when it comes to food, but all around, today was a great day. Days like this, I can't help but think that maybe, just maybe, it'll all be okay in the end.

Friday, April 9, 2010


I've been thinking a lot about this lately. Number one, I am pissed at my insurance company- I got a letter from them yesterday saying they were denying payment on any more Occupational Therapy (OT) for Frank. I've had to call them and harrass them every three months or so for the past two years to get them to approve twelve more visits for him, but never a denial letter like this before. I called them immediately and asked them what was going on; the guy I spoke with said it was possible the way the provider submitted the claim was written differently- a different diagnostic code, perhaps. I doubt it, but I called the OT place, as the insurance dude suggested, to ask them to call insurance's utilization managment line to get the appeal going on the denial.

The woman at OT who handles all this is on vacation until Monday. *sigh* So I had to cancel Frank's appointment for today. With my husband still being out of work, and my job tenuous, I'm not looking to spend $200 out of pocket and then going through the wringer of trying to get that money back from insurance.

One year from now, he'll be in kindergarten screening. Frank will be five the following September. Everyone around us is advising us to postpone kindergarten for him until the year he turns six. Frank is very bright, and learning a great deal in preschool; I fear that if he had to spend an extra year in pre-K, he'd be bored. Physically, he's tall for his age, and he's pretty good at most physical skills he should be good at. I just worry that the SPD will make kindergarten difficult for him. I spoke with my local Board of Education last summer about getting OT through them, and was told that he'd have to go to their preschool disabled class to be able to get any kind of service. Both my husband and I agreed that would not be the best placement for Frank, unless it was a class full of kids with SPD! He loves his school now, and has been going there since he was five months old. The staff is great, and very understanding and willing to work with his SPD "quirks".

I have to admit, though, one reason I'd like him to start kindergarten the year he turns five is so I can push for him to get OT in school and therefore not have to deal with arguing with insurance about it anymore!

Number two reason this has been on my mind a lot lately is because of Potty Training. It's been a miserable failure. He has all the physical abilities They say he should have to be ready for it, but, because of the SPD, he has an aversion to change, which means he will never be emotionally ready for it unless we tell him it's time, and even then, he's fighting us on it. Last weekend, we had him in underwear (that he helped pick out) most of the weekend, and he sat on the potty pretty well, but five minutes after he got off the potty, he wet himself. (Yes, clearly he actually has control over his bladder!) I feel bad for saying it, and it flies against what so many more experienced parents are telling me, but we are going to force him to potty train. (None of these more experienced parents have kids with SPD!) I expect it to be a painful process, and am not looking forward to it.

Thursday, April 8, 2010

Remember me?

Yeah, I've come out of hibernation. It happens every year- between early January and mid-March, I get depressed and don't do anything and lose all desire to do anything creative. But once there's more light and higher temperatures, my mood generally improves. Yay, spring!

It's been crazy hot here for about a week now. We're talking blazing sun and temperatures in the 80s. It's been great, because my abbreviated spring break was this week, so I got a ton of yardwork done! All the ugly, crappy, large bushes the previous owners of this house had planted are now gone. I also planted some hyacinths, and transplanted tulips and daffodils. Now, we need to bring in a ton of topsoil, to put in the craters that were formerly bushes, and I need to sit back and plot out what pretty things I'll put in this summer. I need to buy a bunch of johnny jump ups:

I have a couple, but I want more more more! They bloom all summer long and come back every year.
Another bright, colorful flower I want is lantana:

I had a bunch of these in the flowerpots at the townhouse, but they've all died off. If you plant them in the ground, they should come back every year.
In other news, Frank is still sleeping on the crib mattress on the floor in his room. And he is still, at three and a half, not potty trained. His OT, daycare teachers, my husband, and I, after much discussion, have decided that he will have to forced- as a child with Sensory processing Disorder, he has an aversion to change- he pretty much would never potty train if he could decide, because it's something different. As bad as I feel about forcing him to do something that will involve wailing and gnashing of teeth, I don't really feel we have any other choice- he will never be one of those kids who randomly one day decides he is ready to do it. It's going to be a battle, and it's going to be ugly. We tried it over last weekend, and he would sit on the toilet for up to a half hour at a time, but he never did anything in the toilet- he'd hold it until he got off the toilet, and wet his underwear five minutes later! Yay, parenthood!