Saturday, September 17, 2011


Frank got a trampoline, Christmas, I think, last year.  It's one of those small, individual sized ones, with a grip bar.  We basically told him that we were not putting it together for him until he was using the potty: "Trampolines are for big boys who don't use diapers!"  Fast forward to now. 

The trampoline has been in the box, in his closet, this whole time, and the other day, for the first time since he conquered the toilet, he noticed.  "Mommy, I want to use my trampoline!"  Uh oh.  I will be the first to admit my husband is way better at Putting Things Together than I am, and I did not know if we'd have time this weekend to do it.

However, it turned out, we did have time, this morning.  Darrel and I put it together, and the kid LOVES it.  Most kids, after they jump like crazy on a trampoline for a bit, are all revved up, but, like many SPD kids, not Frank.  He'll jump for a bit, and then flop down on the couch and zone out.  (The zoning out may have more to do with his cold he currently has, though.  We'll see as time goes on!)

In other news, he is taking vitamins now.  He swallows these gummy vitamins whole, instead of chewing them, but they get in his body, so I really don't care. :)

Thursday, September 8, 2011


Yesterday was the first day of kindergarten.  Frank is going to the same place he's gone to daycare since he was five months old.  It's a full day, as opposed to our home district, which is only a half day.  Also, this class has only 13 kids, and a teacher and an aide, whereas he could have 25 kids in his class at our local elementary school, and one teacher.  We figured that, with the SPD and the fact that he won't be five for another two weeks, lots of attention would be good.  Also, with the SPD and difficulty with transitions, this gives him another year to mature before we throw him in with a whole bunch of new kids.

He got a bit teary-eyed yesterday when I brought him to school.  He told me on the way in that, "I hate new school years.  I hate going to a new class.  It's so stupid.  I did fine in my old class."  Well, you can't really fault his logic, I guess.

Much to my pleasure, the aide from his class last year is in his class this year.  He saw her and yelled out her name and gave her a huge bear hug.  That alone helped a bit, I think.  I wonder if it was just a natural switching thigns around, so things don't get stale, or if the director switched her for Frank's sake.  They've been awesome all along with all of his quirks, so I wouldn't put it past them. 

Frank was and probably always will be the first to arrive in the morning, which can be difficult, because there was nothign to distract from the fact that OH MY GOD THIS IS A WHOLE NEW CLASSROOM AND NEW TEACHER.  When this sawned on him, less than a minute after he'd hugged the aide, he began to weep and threw his arms around me.  I picked him up and began to wander around the room, pointing things out to him.  He eventually calmed down, and perked up when the teacher said casually, "Hey, Frank, let's turn on the computer."  Frank loves to play games on the computer.  He immediately slid down from me and ran and sat at the computer, where he and the teacher discussed games at his favorite websites.

I left after about a half hour there.  I have first period off this year, which is nice, because I'm not as rushed in the mornings, so I could take the time to help him settle in.  I called in mid-morning, and the teacher reassured me he was fine. 

When I went to pick him up, he was exhausted.  He was ornery adn cranky all evening, and went right down at bedtime.  He woke around 6:30am this morning, which is late for him.  Right now, it's ten minutes to eight at night, and I put him to bed around 7:15pm.  He didn't complain.  This new kindergarten routine must be exhausting!

So, all in all, the transitionhas gone well.  I can now start to worry about first grade, next year, in a whole new school.  That, my friends, is going to be the real culture shock. was your first day of school?

Monday, September 5, 2011

New School Year

Frank and I did some back-to-school shopping today, specifically, for clothing.  (Note to self: Never ever do this on Labor Day again.  Ever.  It's like shopping for presents on December 23rd.)  He's got plenty of t-shirts, but I was looking for long sleeved shirts.  Target didn't seem to have much out yet, which is fine.  But it occured to me while we were shopping that things I do as part of routine might seem odd to others.

For example, I picked up one long-sleeved shirt.  I felt it, and then said to Frank, "Hey, how does this feel to you?"  Most mothers would ask their child how the shirt looks.  Frank truly does not care how a shirt looks.  You could put anything on him, and so long as it covers his body, and doesn't itch, he's good.  It doesn't have to match his pants, either.  (He's started picking out his own clothing in the morning.  The results have been interesting at times.)

He was very matter-of-fact about my question, too.  He ran his fingers over the inside seam in the neck, and said, "Feels good to me."  I bought the shirt in every color they had for this style, because, as the SPD parents all know, when you find something the kid approves, this is what you do.

Some brands of shirts, I can buy without him accompanying me, because I know from past sizes that they feel good to him.  But new ones, I always have him approve for me, because the last thing I need is to be faced with, "I don't like that shirt- it itches!" on a school morning. 

We had to skip OT last week, and will have to skip this week as well.  I don't like doing that, but that's how it goes, I guess.

Saturday, September 3, 2011

Disney World!

We are back from Disney.  Overall, it was a good trip.  We did, however, hit some snafus along the way:

1. Sleeping arrangements.  My mother in law (MIL) came with us.  The way the suite was set up at Animal Kingdom Lodge- Kidani Village, we decided that Frank and MIL would sleep in the same room.  MIL would have the queen-sized bed, and Frank would have the pull-out couch, which was far closer to the ground.

"Can't you take the mattress and put it on the floor?" the boy asked me.  Um, no.  There was not enough floor space to take the double-sized mattress and put it on the floor.  The first night, he had a bit of a hard time sleeping, but by the second night, he was fine.

"I can't sleep without someone in here with me!"  Yes, it was a different sleeping enviornment, with no night light, and different noises, and different shadows on the walls.  Fortunately, I guess, we pretty well wore out Grandma each day, so she was perfectly happy to go to bed when Frank did.  And we left the bathroom light on all night, which sufficed as a night light.

2. Meals: We booked a Character Breakfast the first morning we were there, and a Character Dinner close to the end of our trip.  The dinner went over far better than the breakfast.  The Character part, you see, was great both times, but Frank has only recently started eating many typical breakfast foods, so when I got him some Mickey-shaped waffles and a couple of pancakes, he took one look at them, and...

"I don't like these.  They're different from mine."

Now, our plan that day was to eat, take the obligatory pictures, and then go right to a park for the morning.  We were not going back to our room, and in any case, we did not have any food in our room.  We got him to eat a bite or two of the waffle, even threatening him with, "If you do not eat that waffle, you are getting nothing until lunch, and it is a LONG time until then!"  Yes, SPD parents, I know: very counterproductive. 

I resorted to desperate measures: "Try a hash brown.  They're like French fries and you can drown them in ketchup!"  There was some hesitation, but he eventually tried one- SCORE!  He liked it, and ate two.  Okay, whatever, the kid ate something, let's go play.

Later that day, Darrel went food shopping and bought the neccessary supplies for the week: chicken nuggets, fish sticks, and frozen waffles.  Oh, and tea bags for Mommy.

3. The Heat and Humidity: Frank takes after myself and my father's family in this regard.  Father's Family does not handle heat well.  At all.  This, I assume, is why we always headed north to the Adirondacks during summers when I was a child.  The first day at Disney, after walking from the parking lot, Frank began to whine about how hot it was, and he was sooo tired, and could we pleeeeease carry him?  My husband and I are quick learners- we rented a stroller for him after that session.  Best.  Thing.  Ever. 

The kid still whined about how hoooot it was, mind you.  But we didn't have to carry him while he did so.

I also ended up buying him an $18 fan/water squirty thing combo.  He whined for four days how much he wanted it before I gave in, though.  (That counts for something, right?)

All in all, he had a great time.  Frank LOVES crazy roller coaster rides.  This suits me just fine, because Darrel loves them, too, and now he has someone to go on these rides with.  I do not do well on anything faster or more spinning than a Ferris Wheel.  (Or Star Tours.  I loved Star Tours.  I suspect the Star Wars geekdom is strong enough to overcome the vertigo.)  I get really bad vertigo.  (Hmm...vestibular issues?)  I am the one who's perfectly content much to the surprise of others, to hold everyone's stuff while the rest of my party goes on a ride.  Big Thunder Mountain Railroad?  The boys went on it six times altogether.  Star Tours- I think Frank went on it ten times altogether.  The only big rides he did not go on at Disney were Space Mountain and Tower of Terror. 

He also loved the characters.  For those who have never been, most of the characters you meet are in costumes that make them between six and seven feet tall, which can be intimidating to some kids.  Not to Mr Personality, though- he ran right up and hugged Mickey, Minnie, Goofy, et al.  The characters in costumes do not talk, either, but they communicate very eloquently with gestures.  (Well, at least to me- maybe it was easy for me to understand because of all the signing I do?)  Frank would start up a "conversation" with the characters...continuing even after we'd taken his picture and the character was trying to inch away gracefully and go on to the next kid:

"Goofy, I really like the pizza here!  I eat pizza now, do you know that?  My favorite pizza is Hometown Pizza, but I like yours a lot!  I ate three pieces of this pizza!  Did you eat some, or do you just cook it?  How many kids do you talk to every day?  I saw Mickey, Minnie, Pluto, and Doald before!  Do you remember me from breakfast?"

Darrel turned to me and said, "Only our kid could have a complete conversation with a character that does not talk back."

The trip home left a bit to be desired.  Thanks to Hurricane Irene, we ended up driving home instead of flying.  20 hours in a car is more fun than any human should be allowed, trust me.  We drove as far as Charlotte, NC, Sunday night, and crashed with my cousin and her family.  this is the same cousin whose son and Frank were thick as thieves in Delaware, so they were delighted to have an impromptu sleepover.  Then, we got up Monday morning and drove the rest of the way home, arriving at about 7pm that night.

I'm still exhausted.  Darrel wants to go back in three years.  I wonder if seven year olds can fit in those strollers.

Tuesday, August 16, 2011

Two steps forward, one step back

I brought a bunch of fruits and vegetables today to OT.  We had discussed this last week, and Frank went food shopping with me yesterday to get them, so he actually picked out a few things himself.  He seemed pretty enthusiastic, and he's made a lot of progress recently, so I was cautiously optimistic.

We got him to try some baked potato.  Through a lot of tears, whining, and throwing himself into my lap and hiding his face.  "I...can't...I...don'!  It scares me!"

I freely admit I was not in the best frame of mind today, anyway.  I had a medical thing this morning (for details on that, you can check out my other blog,  My brain is usually a little fuzzy after that, and I sometimes am cranky, too.  These are normal reactions to IVIG infusions, so I'm not real worried about it, especially because they pretty well always disappear by the following morning.  But, mental note: OT feeding sessions are generally not good to have right after IVIG. 

So.  D, the OT, did not seem at all surprised or concerned at today's lack of results.  I, however, felt like my head was going to explode.  I tried to be calm and encouraging, but after a while I just shut up and let D do all the talking.  Really, what I wanted to do at that point was just get up and leave the two of them alone in the room- maybe that would have helped?  I don't know, but I do know that Frank totally feeds off my moods quite often. 

I've been kind of on a high recently with this.  He's using the potty for everything, all day long!  He's eating new foods!  He's very articulate about thigns when they bother him, instead of melting down!  He handles routine changes beautifully!  We're gettin' it done!  He's not going to be that weird kid in his class after all!

This evening, I am depressed about his future social prospects again.

Sunday, August 14, 2011

Life and stuff

I didn't post about OT this week because life got in the way.  My mother is in the hospital with pneumonia.  She'll be discharged tomorrow, so she's doing much better.  But for the first time in a while, I found myself focusing much more on another human than my child. 

The child in question handles mild changes in routine pretty well.  I have purposely established things regarding him to run in a similar manner but not the exact same routine every day.  Like most kids with SPD, Frank thrives on routine.  As D explained to me, when you have a routine, you know what sensory "assaults" are coming your way each day.  You know when and how to "gird your loins", so to speak.  When that routine changes, and especially without advance notice, it's disturbing, because you don't know what's coming your way.

Frank used to be much worse.  During his evening routine, for example, first he had to have a bath, then get dressed, then get a story or two (from Daddy, not me), then brush teeth, then bed, and we had to always say the exact same things as we said good night to him.  If you varied this routine even slightly, he freaked out.  As D explained it, back in the day when I feared a diagnosis of SPD meant he had autism, "Generally speaking, autistic kids don't freak out at changes in routine bcause of their autism.  They freak out because they have SPD, too."

The Vacation We Do Not Speak Of, from two years ago?  He was miserable because he wasn't in his bed at night and naptime, and wasn't at his chair in his kitchen for meals, and these chicken nuggets didn't look like his at home, and when were we going home?

After discussing that in detail with D, and with my husband, we started changing things up.  I started doing different routines at bedtime every night.  I started having him sit in different chairs at the kitchen table to eat, and, once he outgrew his milk allergy, We started bringing him to McDonalds and Wendys, and stopped bringing a baggie of chicken nuggets from home everywhere we went- if it was a place like a diner, where I knew they'd serve chicken nuggets or chicken fingers, we started ordering those for him. 

This went over with the boy, as my mother would say, like a fart in church.  The first dozen or so times we tried to get him to eat Other Chicken, he had a hissy fit and refused to eat it.  Frustrating, to be sure, but, really, I had expected no less from him. 

He also disliked changes in bedtime routine.  "NO!  Brush teeth comes after story, not before!!"  Such small things, but oh so important to him. 

Anyway, in such small steps are changes made.  Frank is pretty flexible about most changes in routine now.  He knows by now that I and my husband have got his back, no matter what.  We've even left him with a few babysitters a few times, babysitters who were Not Grandma, and he had a splendid time with someone new to play with. 

Anyway, back to my original topic, when Mom called to say she was going to the hospital Tuesday night, while I waited for my husband to get home from work, I got Frank his dinner and got things organzied for the evening.  I told him Mimi was sick and I was going to see her in the hospital as soon as Daddy got home.  Even though I'm the one who handles most of his evening routine usually, because my husband works until after 7pm, this didn't seem to faze him at all.  And the times I've left for a few hours, or taken him, to visit my mother didn't seem to faze him, either. 

He's much calmer about changes now than he was two years ago, or even one year ago.  I am hoping this continues when we go to Disney!

Friday, August 5, 2011

Two weeks

That's how long it's been since he's had an accident.

He still hasn't pooped in the toilet at school, though, so I fear it's only a matter of time.

He's ceased complaining about pain when he uses the toilet, and I have not put any Miralax in his food, six weeks, maybe?  I really think my intial theory was correct- he was complaining that it hurt to poop in the toilet, but didn't hurt to poop in his diaper, because the different angle felt strange to him, and he misinterpreted that strangeness as pain. 

He tried a sugar cookie today.  He was kind of excited about it, too.  The sugar cookies I bought are plain, beige cookies.  Beige to him has come to equal tolerable food in some ways.  Beige does not have little surprise bits in it, like chocolate chips.  He bit into the cookie, and burst into tears. 

"I don't like it!"

I tried to get him to finish that cookie, but he was a mess.  When I got him calmed down, he was able to tell me, "It's too sugary!" 

My son is a salt fiend.  The only thing with sugar that goes into his body on a regular basis is apple juice.  So, while I was a bit disappointed, I wasn't all that shocked. 

D, his OT, says she wants to get him to eat a cupcake- not the icing, but the cake part.  Cupcakes are a huge part of social things for kids his age, and kids will start to notice soon that he eats differently, and, as we know, kids can be so cruel.  I still want him to eat fruits and veggies, but, honestly, as someone who was picked on for virtually her entire schooling years, I agree with D; anything that will lessen the chances of him being an easy target for bullying is really a splendid idea in my book.

Thursday, August 4, 2011

Big Boy Bed

When Frank was about two and a half, we took him out of the crib.  He was getting entirely too big for it, and I feared, the way he jumped around in it, that he would break it.  We had set up the Big Boy Bed (BBB) in his room, but he flat out refused to use it.  "I'm not big enough for it yet," he said.  I set the crib mattress on the floor in his room...and he's slept there ever since, on the floor, next to his bed.  When we go away, we have to pull the mattress off one of the beds and put it on the floor.  We've never flown anywhere with him before, so we've had the luxury of being able to bring all his "buddies" (stuffed animals) that he sleeps with along on any trips we've gone on.  And there are a lot of buddies...I think right now there's about 15 of them. 

Anyway, the crib mattress is starting to show some wear and tear.  And Frank's legs are starting to hang off the end.  He'll willingly lie down on the BBB for story time, or to pretend to sleep, but lights out at night, and the door closes, he has to be on the crib mattress on the floor.  I've explained to him how he's growing, and soon he won't be able to fit on the mattress any more, and he keeps saying that "someday" he'll use the BBB. 

Tonight I spent some time talking about it.  He kept trying to change the subject, but I kept pressing him.  We went in his room, turned the light out, and laid down, and I asked him how does the BBB feel?  How does it smell?  How do things look from up there?  How does your body feel up there?  Each thing he told me, I explained why that was different from the mattress: The sheets on the bed are new, and haven't been washed much yet, so they feel a bit rough.  The BBB makes different noises than the mattress does when you move around on it.  It smells differently up there because his head hasn't laid on that pillow that often- let's put the buddies up there and see if that helps.  (It did.) 

He didn't like talking about all this, and told me he doesn't like it when we "force [him] to do something different."  I explained to him that sometimes we have to do things that are different, and they just take some getting used to.  I told him we know and understand that he has a hard time with doing some things that are different, that his brain works a little differently than others, and that it's mine and Darrel's jobs to teach him how to deal with that.  He didn't say much.

I think sometimes I maybe talk too much, that because he has a really sophisitcated vocabulary for his age, and catches onto things really quickly, that I can talk as if he's much older than he is.  I'm not sure how much he understands when I babble on at him like that.  I guess at some point he'll start to understand and process fully when I explain stuff like this to him.

In the meantime, i really hope he starts using the BBB soon, before I have to force the issue and take the mattress away from him!

Saturday, July 30, 2011

Is this really my kid??

So, this morning was a lazy morning; we all basically hung out in our PJs until nearly noon.  Darrel made pancakes and bacon.  (For those who don't know, generally, I cook dinners, except for red meat.  Red meat is a man's job, in my opinion.  And breakfast?  My husband excels at cooking breakfast, so, when we occasionally do something more elaborate than cereal, he cooks.)  We talked with Frank while we ate.  I mentioned again to Frank about how I was planning on bringing a waffle and a pancake to OT this coming Tuesday because I really think he'll like them.  "Also, when we go to Disney," Darrel added, "You can have pancakes shaped like Mickey's head!"  Frank was intrigued by this, so Darrel explained how they make the pancakes with the head and two ears to look like Mickey's sillouette.  I asked Frank to touch a pancake, he willingly did so, and I thought that was the end of it.

An hour later, I was outside doing some gardening, and Darrel came out to find me.  "Guess what he's doing right now," he said.

"Um...watching TV?"

"Besides that."

"Um...eating lunch?"

"Sort of."

"Eating a pancake?"  I really didn't believe this one, but tossed it out there just as a guess.  Imagine how shocked I was when Darrel nodded.  Apparently, Frank had wandered into the kitchen while Darrel was cleaning up some stuff, and started poking at the pile of leftover pancakes.  Darrel casually offered him one, and Frank hesitated, and then said, "I'll just take a small piece."  He tore off a small piece, ate it, and decided he liked it, so he grabed the remainder of that pancake and shoved it in his mouth!

Wow.  My kid ate a pancake!

We thought that was the end of the pleasant surprises for the day.  Nope, the kid had other plans.  About an hour after he ate the pancake, he calmly got up, went in the bathroom, got his potty seat set up...and pooped in the potty, only calling out for help when it was time to wipe him off!  He's used the toilet for number two off and on for a few weeks now, but this was the first time he's done it all totally on his own, and not asked for someone to keep him company.  (Yeah, sitting with my son in the bathroom while he defacates...not one of those Hallmark parenting moments anyone ever tells you about.)

THEN, later in the evening, we got back from food shopping and were putting the food away.  I had gotten chocolate chip cookies, with the idea of bringing them to OT Tuesday.  I showed them to Frank, and he was intrigued again.  He came over to check the package out.  Darrel asked him if he wanted to try one: "I'll eat half of a cookie, and you eat the other half."  Much to both of our surprise, Frank agreed!  He took a decent sized bite, chewed, and swallowed...and then ran for his milk to get rid of the taste.  The cookie itself, he said, was fine, but, ..."I didn't like the chips, Mommy.  They were too much, too chocolatey."

"That's fine, honey," I told him.  "You tried it, and the trying to me is the most important part.  You are not going to like every single thing you eat, but I want you to be able to try anythign we ask you to."

As a reward for all his good work today, we got McDonald's for dinner.  (My child is an American.  If he could eat McDonald's for dinner every night of the week, he would.)  He also got to play extended Wii time with Daddy this evening, finally getting to bed about 8:30pm.

He's been so open and into trying new things recently, it's nuts!  I keep worrying that it's going to end, and he'll go back to his previously-limited diet again soon.  But we both think he's getting bored eating the same things the same times every single day, and maybe that's playing into his interest.  Whether it's that or he wants to please D, his OT, I don't really care- I just hope it continues!

Thursday, July 28, 2011

OT Tuesday

This week, we returned from our whirlwind road trip, unpacked, got food, hopped in the car, and flew to OT.  I brought Grover Juice and Big Bird Juice in the jugs.  ("I can't drink that, Mommy!  It doesn't taste the same if it's not in the juice box!")  I also brought Cherrios, which he used to eat, kind of, and Nilla Wafers.  I loved Nilla Wafers as a kid.  They're the kind of cookie that just one bite can bring back childhood memories.  Also, they're prety basic and plain, so I thought maybe we had a good shot at getting those going.

This week, we went four for four!   He drank the juice immediately, willingly ate the handful of Cheerios I'd brought in a baggie, and, after some convincing and discussion with D, he actually ate one entire Nilla Wafer!  So, he had more homework added on- not only is he to continue drinking milk with dinner, and a juice box of regular apple juice every day, but he is to drink so Grover Juice and Big Bird Juice out of a jug every day as well.  He also has to eat one Nilla Wafer each day.

He's been grudgeingly and slowly nibbling his way through each cookie, but actually asked for Cheerios for breakfast yesterday and today.  We (Darrel, D the OT, and I) all think he's grown bored with eating the same foods for the same meals every day, and is therefore a bit more open to trying new stuff.  In this spirit of open mindedness, I am going to be a bit more daring next week- I am bringing a frozen waffle and a frozen pancake to OT.  (They have a toaster oven there we can use to heat them up.)  I am also going to bring a small bowl of pasta with butter.

D told me she would like to get him to eat a cupcake.  Not the icing part, but the cake part.  Food in our society is a very social thing, and Frank is rapidly approaching the age where other kids are going to actually start noticing what he's eating.  Plenty of little kids don't eat icing, so if we can get him to eat the cake part, he'll blend a lot more, socially. 

It's going to be a bit of a challenge- aside from juice, Nilla Wafers are the first things he's eaten that are at all sugary.  Cake is also a vastly different texture from anything he eats right now.  It'll have to be a vanilla cupcake, too, because there's no way either of us could ever convince him to eat a chocolate one, with how dark in color it is. 


I had lunch yesterday with two of my oldest friends.  One of them has a young son, younger than Frank.  The son has food issues, too, although not from SPD.  A and I spent probably half of lunch discussing our son's food issues, and therapies, and things people say when they're trying to be helpful.  It was extremely cathartic, and made me wish I could set up a support group for parents of kids with SPD around here.  Discussing with online friends is wonderful, but in person would be so much better!


I forgot to mention, in the Road Trip entry, details about the rides on the boardwalk.  I get vertigo very easily.  I, generally speaking, do not enjoy rides at all.  I like the Ferris Wheel, and a merry-go-round, but that's pretty much it.  Frank went on a ton of rides Sunday (some by himself, others with my cousins), and he had a BLAST!  As I said to my husband (who loves roller coasters), when I told him the story, "I think you have your roller coaster partner."  I suppose I shouldn't have been so surprised at how into them Frank got- the kid does love it when I spin him around, and keeps begging for more. The only ride he refused was one he deemed too loud, and he calmly informed me of that before we even got on line for it, for which I complimented him. 

Maybe my constant talking about how things feel, or sound, or taste, is finally starting to reap some benefits?

Road trip!

Last week, I got a text message from my cousin, L: "We're heading to my mom's house in Rehoboth Beach.  Do you want to come meet us there?"

I have six first cousins, on my father's side.  I used to have seven, but one died six weeks before my wedding.  Our parents are all very close, and as such,w e grew up very close as well.  We saw each other frequently, and our families all vacationed together.  Now, we are spread all over the country, and I miss my cousins in ways I can't even describe.  Usually, I only see them at weddings (the older generation of my family has not yet started to die off, fortunately, so there have been no funerals in the mix, aside from the aforementioned cousin).  The last time I saw them was over a year ago, at the wedding of the youngest cousin. 

So, my response, after squeeing a bit, was HELL, YEAH!  Darrel couldn't get off work at such short notice, so, on Sunday morning, I packed up, threw Frank in the car with a bunch of toys, books, and snacks, and set off for Rehoboth Beach.

Frank had never met my cousins.  Frank had never slept in the same room as, well, anyone.  The last time Frank was on a beach (Rehoboth, actually), it was for the Vacation We Pretend Never Happened.  Frank was miserable all week that time- he was too hot, the sand was too hot, the ocean was too loud and too scary, the sand itched everywhere it touched name it, he complained about it.  Darrel was unhappy, because he loves the beach, and wa sincredibly disappointed Frank seemed to hate it.  I was unhappy because I like being on the go and seeing new things on a vacation, not sitting on a beach for a week doing nothing.

So, while I drove, and Frank occupied himself by singing and playing with his toys, I worried.  We were only going for less than 48 hours.  How bad could it all be? 

Okay, now that the SPD mommies have all stopped laughing at that one. ;) turned out great!!  Cousin J has two children: G, a son, is just over a year older than Frank.  E, a daughter, is two.  L, her older sister, was also there, and my aunt and my aunt's second husband, the owners of the house, were there as well. 

Frank and G hit it off immediately.  An hour after meeting, they were sitting curled up in a chair together, watching TV.  They ran around doing all kinds of things together.  When we went to the boardwalk that evening, they rode all kinds of rides together.  They even slept in the same room together!  (I had brought the crib mattress Frank sleeps on, as well as all his "buddies"- stuffed animals- and set everything up exactly as it was at home.  We set the crib mattress up on the floor in G's room.)  The boys didn't get to sleep until around 10:30pm Sunday night.  Their room was right across from mine, so I was able to hear them whispering to each other.  It was very cute, and made me smile a lot.  (J and I are only months apart, and we slept over each others' house frequently when we were growing up.)

Monday, we went to the beach.  Frank willingly let me lube him up with sunscreen, which alone is an improvement over the beginning of summer- he complained about how cold it was, and it smelled, and it felt funny on his skin.  Monday, though, he simply stood there, chatting with G, while I did so. 

To sum up, this time, Frank loved the beach!  he played in the sand with G, and went in the water with the grownups.  He had a bit of a scare early on, when he went charging into the water to get some in a bucket for the sand castle he and G were building, and actually went under.  But L was right there and grabbed him immediately, and, after I got his face dried off and calmed him down, he went right back to the water's edge!  I almost cried, I was so happy that day.  When we went back to the car, he had sand everywhere, and never mentioned it at all.  He bathed with G, and we ate dinner and put the kids to bed early.

Tuesday morning, Frank and I had to leave- he had a 3pm appointment for OT, and I of course did not want to miss it.  We hugged everyone, said good bye, and hit the road.

Not only was it great to see my cousins unexpectedly, but it was also nice from a different perspective: once I had explained the exact nature of Frank's SPD, and the types of problems he tended to have, and everyone asked the questions they had, that was it.  It was all No Big Deal.  When we ate, they'd ask what Frank wanted to eat, but it was very much in the same way they'd ask anyone, not in that "what does your strange child with his strange eating ways want to eat" tone I often hear.  I had forgotten how relaxing it could be, just hanging with family, listening to kids running around playing, and not having a care in the world.

Thursday, July 21, 2011


My son has always hated the sprinkler.  He's hated being sprayed with water from a hose.  He refused to let us turn on the shower head.  The one thing he remembers from (a pretty awful) family vacation two years ago (when he wasn't even three years old) is, "...there was no bathtub, only a shower, so you had to wash me in the shower, and I cried and cried the whole time."

His daycare has water play three days a week, two of which are the days he goes during the summer.  The first week of summer this year, I didn't even bother sending in a bathing suit.  Last year, he always flat-out refused to try running through the sprinkler, and would just sit and watch his friends, so, really, why bother?

So, the first day of water play, I got a note sent home: "Just a reminder- Water play is Wednesday, Thursday, and Friday each week.  Please send Frank in with his bathing suit on and a change of pants." 

Um, okay.  So, when I went and got my kid, I noticed he was wearing a different pair of shorts than I had sent him to school in.  Why, you ask?  He'd run through the sprinkler in those shorts, and changed into the spare pair afterwards (that is always kept on hand for, um, bathroom emergencies). 

Really?  MY kid?  Ran through the sprinkler? 

"Yeah, Mommy, it was fun!" he told me in the car on the way home.  "I want to wear my Star Wars bathing suit tomorrow for water play!"

Really.  MY kid.  Ran through the sprinkler!

He's engaged in water play every day since then, and this past Sunday, I had him outside running through our sprinkler here for an hour straight, laughing the whole time.  I was afraid to run inside to get my camera, afraid to ruin the moment.  I do wish I had gotten a picture, though. 

It was glorious.

Tuesday, July 19, 2011

It's OT Tuesday!

I have to say, I am kind of enjoying OT this time around.  When we went before, Frank was between 17 months and three years, four months, and not very rational when it came to food sometimes.  In the year and some odd months we've been out of OT, he's matured a lot, and calmed down about certain things.  For example, it used to be if I even asked him to touch a food, as in, "Frank, can you hand me that apple over there?", I would get much wailing and gnashing of teeth, and refusal to touch the food.  Now, in the above scenario, he'll freely grab the apple and calmly hand it to me.

According to his OT, D, this is quite typical of the age he was then and the age he is now.  When we started OT, we made a lot of progress in a relatively short time because kids of that age are naturally curious about everything, food included.  Sure, I had to hold him on my lap and basically shove the tiny bit o food in his mouth, but after doing this a few times, he usually started to accept it.  The shoving was usually accompanied by screaming and struggling and trying to spit the food ou at me.  Good times.

Now, however, according to D, he's more rational.  These issues can be discussed with him.  Neither she nor I hold him and shove food in his mouth- she calmly talks him into picking it up and doing it himself.  This woman, I swear to God, is like the Child Whisperer.  I've tried with the stuff we bring to OT, and he flat out refuses for me.  After looking him in the eye and calmly discussing hos the presented food or beverage is very similar to something he already eats, he usually (hesistantly) will pick it up and do what she asks- rub it against his lips, hold it on his tongue, chew and swallow it.

Today it was cow's milk and apple juice.  He drinks Grover Juice and Big Bird Juice from juice boxes.  (Parents of small children will know the brands I speak of.)  He flat out refuses to drink either from a cup (poured out of a jug), or any other brand of white grape or apple juice.  Today, he drank an entire juice box of run-of-the-mill apple juice, and a half cup of milk! 

D gave him homework, too.  He has to have a cup of milk with dinner every night, and sometime during the day, he has to drink a juice box of regular apple juice.

I am trying to decide what foods to bring next week.  I am definitely bringing the jug of Grover Juice we have here, but what else- a hamburger (from McDonald's) or some pasta with butter?  Right now, I am focusing on foods that will make it easier when we go to Disney later this summer.  Once we get all those typical Small Child Foods going, we can go back to pushing fruits and vegetables. 

He's making progress with his ankles, too-  his gait going down stairs is somewhat less stilted, and when he gets up from a sitting or lying down position on the floor, he moves less like an old man with arthritis.  D is pleased with his progress in a short amount of time in this area.

Thursday, July 14, 2011

Pizza! Pizza!

So, I started giving some pizza to Frank a couple of weeks ago.  I chose pizza because it's salty, and the kid LOVES salty things.  I gave him a tiny piece at first, and told him to touch it.  He did, so next we moved onto him holding it up to his lips- success!  Over a period of mere days we progressed from that to him actually eating a few bites.

On Sunday evening, he asked for pizza for dinner.  Darrel and I looked at each other, and Darrel said, "I guess tonight's pizza night!"  He ran out and got a pizza, and for the first time, the three of us ate pizza together, like a family. 

This opens up eating options so much more for us, both here and when we go to Disney World.  Darrel and I love pizza, and usually have it every Friday night.  It's part of our routine.  Now Frank can be part of that routine, and I am so happy, both for him and for us.

Thursday, July 7, 2011

We started OT again!

For those who were not here to follow the saga, I got Frank in to OT at 17 months old.  He was in OT for about two years before insurance stopped paying.  They said they should never have been paying in the first place, because the SPD was not caused by an accident or catastrophic illness. 

Um, okay.

I appealed it, but they still denied it, and got all snippy with me: "If you read your benefits booklet, you will see where it says we do not cover this."  Yeah, whatever.  I have such deeep-seated hatred for everyone who works for health insurance anyway, because of my own medical issues.  If I heard that corporate headquarters of my insurance company burned to the ground, I would laugh.  Seriously.

I strongly suspect part of the problem here is that SPD is not in the DSM (Diagnostic and Statistical Manual) as a stand-alone diagnosis.  It's listed under autism, basically, as a symptom.  The DSM is undergoing revision and due to be published with a new edition in 2013, and there is a big push to get SPD in there this time.  This would make it MUCH easier to get insurance coverage, among other things.

Anyway, in the fall, I called the Child Development Center at Big Area Hospital.  I got an appointment for Frank for late March- six months out.  When we brought him for the appointment, the developmental pediatrician spent two hours with him.  Her verdict:

1. He has SPD, with severe oral defensiveness.  (Duh.)
2. It's affecting his toileting. (Duh.)
3. He has weakness in the muscles around his ankles.  This makes going down stairs and riding a bike, among other things, difficult for him.  He needs OT for this. 

When we heard number three, Darrel and I looked at each other and smiled. 

The developmental pediatrician smiled back and told us we were not the first to react that way.

Anyway, Tuesday was our first day back at OT.  D, the OT we'd gone to before, was happy to see us back.  She spent the session evaluating where Frank was at now with various physical tasks, and agreed with the diagnosis of muscle weakness.  She showed me some exercises I could do with Frank at home to help with that.  She also had him do some new types of tasks he never did before- he took a ride in a swing that resembled a folded up hammock.  It hugs the body snugly while you swing, providing both deep pressure that SPD kids crave and the rocking motion that soothes them as well.

D agreed with my thoughts on Frank's toileting- it started out as a sensory thign, and it's now behavioral.  She advised we get rid of all Pull-ups, and force Frank to sit on the toilet and try to poop a couple of times a day, to get him to relax more.  She also agreed with the combination of positive and negative reinforcements we've taken to using.  "It comes much more slowly for kids with SPD, but it does happen eventually," she assured me. 

Friday, July 1, 2011

In which I take my child to the dentist...

...and almost cry. 

I told Frank last week that he had a dentist appointment this week.  There are some who will think telling him so far in advance was a Bad Idea: "It gives him a lot more time to worry and come up with bad scenarios!"  Well, maybe.  But I have found that, with this kid, telling him something in advance and giving him time to think it over is way better than springing something on him 12 hours or less in advance.  This way, he has time to gird his loins, so to speak, long before the actual event is here.

So, yesterday, we got up, dressed, and packed his lunch.  I reminded him that he was not going to school first thing- he had a dentists appointment, and which "buddies" (stuffed animals) and which sunglasses (for the bright light) did he want to bring?  Cue up the whining:

"Mommy, I don't want to go to the dentist!"

I decided to be brutally honest with him: "I'm not really a big fan of going to the dentist, either, little man, but we do this every six months so the dentist can check our teeth and make sure they don't have little holes in them and fall out of our mouths."


So, we drove there, and he began the litany again.  I turned the radio up.  (Is 8am too early for alcohol, I wondered to myself.)

Frank's dental practice is about 20 minutes from our house.  They actually handle a decent amount of special needs kids- kids with Down Syndrome and autism, for starters.  The first time I made an appointment for him, I almost dropped the phone, because the receptionist actually knew what SPD was!  So, each time we go, I remind them upon checking in that he has SPD, is very orally defensive, and has extreme anxiety about going to the dentist.  They always are very relaxed, and take all the time he needs to get into the room (which they generally make sure we have a room to ourselves, too) and get settled in.

Yesterday, for the first time, I did not have to hold him down!  he laid down in the chair himself, and I sat perpendicular to him, with his legs across my lap.  he held my hands and squeezed whenever he needed.  The dental tech, M, let him touch all the instruments first, and showed him how they worked. 

I felt tears spring to my eyes.  he was so brave, and so stoic, lying there all tensed up but forcing himself to stay still.  I was so proud of him.  Both M and I kept praising him at how well he was doing, and when he was done, M let him pick out two prizes for doing so well.  (I also let him raid the stash of "potty prizes" when we got home.)

He had no cavities, thankfully.  The only thing he wouldn't let happen was x-rays.  We made an appointment to go back in a couple of weeks, when the dentist who is apparently the child whisperer when it comes to x-rays has time to spend with him.  (He's never before had x-rays, so this refusal didn't entirely shock me.  But I was so over the moon about how well he did otherwise, I did not care!)

Thursday, June 23, 2011


Toileting, for kids with SPD, can be a challenge. 

Well, that's putting it mildly.

Conventional wisdom on toilet training is that you let the child set the pace, and do not push them befoe they are ready.  Unfortunately, if you apply this to the child with SPD, they will be entering middle school still in diapers.

Well, maybe that's an exaggeration, but it doesn't feel like much of one right now. 

My son is four, and will be five in September.  He's entering kindergarten this fall.  He is doing pretty well with peeing in the toilet.  He still has an occasional accident, but from what I understand, that's to be expected in any kid his age. 

He still, however, will not use the toilet for pooping if he can possibly help it.

What makes it all the more frustrating is that he's used the toilet in circumstances when he had no other choice, so I know he's perfectly capable of doing it.  Generally this happens when we are out, whether at a store or restaurant, and I tell him I have no change of pants at all for him, so he has to hold it until we get home, walk around in soiled pants, or use the toilet. 

We've tried all the suggested tips- prizes, charts with stickers, having him clean himself and the soiled underwear up, you name it.  Nothing has worked.  Recently we've gone to more negative reinforcements- no more Wii playing with Daddy in an evening, for example. 

I just don't know what else to do.

Thursday, June 2, 2011

May 31, 2010

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 own 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.

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!)

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.

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.

December 20, 2010

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.

I am starting again.

Some of you may know I got hacked big-time this past winter.  My Facebook and two email accounts were all hacked by someone claiming to be me.  He told people I was stranded with my family in London, had been robbed at gunpoint, and needed $2000 wired to me so I could get home.  Fortunately, my friends are all Internet-savvy, and they all realized fairly quickly it wasn't really me.  For starters, if I were going to London at all, it wouldn't exactly be a secret.  (I was there in 2004 and LOVED it.)  Secondly...over Thanksgiving weekend?  Really?  One of the BIGGEST American holidays of the year?  Smooth move, dude.

Anyway, I am going to move some of my old posts from my other blog, the Jersey Girl, over here, and resume posting about my son's sensory issues and how they affect our every day lives.  I hope you enjoy this, and learn much from it!