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?

Pizza

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*

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.

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.

Ladies and gentlemen...

...at 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!! :)

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...

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.

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.

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.

SPD

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.

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!