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!)