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!

A day in the life of a toddler with Sensory Processing Disorder

8am- I wake up. I need my diaper changed immediately if not sooner because "my butt hurts!" Even though there is no visual evidence of a diaper rash.

8:05am- I get dressed. First, though, Mommy must rub Aveeno cream on my back because "My mosquito bites hurt and itch." Even though all visual evidence of them has disappeared two weeks ago.

8:15am- I ask Mommy to please take the tags out of the t-shirt I've been wearing at least once a week for the past six months because, "the tags hurt". Mommy carefully cuts the tags out and waits for me to start whining because the ragged edge hurts. Miraculously, it does not.

8:16am- I eat my breakfast- a Lender's bagel in the microwave on high for 20 seconds. No, not toasted- bagels are not toast! Bagels must be soft and chewy and warm, not rough like toast!

8:55am- Mommy and I arrive at the dentist. Mommy gets a cleaning. I freak because of all the noise- the thing that sucks saliva out of Mommy's mouth is too high-pitched, as is the thing that actually cleans her teeth. Oh, and the thing that dries out the inside of Mommy's mouth? That's pretty darn terrifying, too- it just sounds scary, and I have no idea why. Mommy seems pretty relaxed, but I don't know why. Wait, Mommy did tell me this, but if she thinks I am letting that dentist guy put his hands IN MY MOUTH and count my teeth, she's got another thing coming. Oh, good, the dentist is a smart man- he decided not to try it, and gave Mommy the name of a dentist who specializes in kids. I don't know why he bothered- I am not letting any strange person do the stuff in my mouth that that guy did in Mommy's mouth today!!

10:30am- Shopping, whee!!! Mommy lets me help her push the cart. We buy all kinds of fireman stuff for my birthday party with my friends! Mommy bought special hats that look like cones. She stands looking at them for a long time before putting them in the cart. I see a cool red plastic fireman hat and ask hopefully if I could have it. Mommy beams at me like that was a wonderful idea and says yes. I wear it around the rest of the store and in the car on the way home. She says we have to be careful with it because I will wear it at my birthday party! I don't care- I like it now! Mommy mutters under her breath something that sounds like, "At least there's one hat you'll wear without screaming."

11:10am- We arrive at the haircut place. Oh, crap. I knew this was coming- Mommy started talking about it over the weekend- but I really hoped she'd forget. I hate haircuts- the place is so loud, especially when the haircut lady uses those loud things near my ears to cut little tiny hairs. The comb feels scratchy on my scalp, and the water bottle she sprays my hair with ("That makes your hair easier to cut," Mommy says.) is just COLD and feels like needles! The place is kind of fun to wander around before the haircut- they have video screens and stuff to play with- but the minute the lady comes to get us, I start crying. I can't help it. I wish I never needed another haircut. I cry through most of the haircut, but about 3/4 of the way through, I notice that the video on the screen in front of my chair (It's so high up!! What if I FALL??) is interesting, so I stop crying so I can hear the video. When the haircut is all done, the lady brushes powder all over me, yuck!! It stinks and it makes me sneeze! Mommy says it helps get the hair off me so it doesn't itch me all day long. Can't they get it off me a different way? Once that's done, though, Mommy picks me up, sits down, and hugs and squeezes me tight, and rubs my scalp for me. Aahhhh...that's so much better. Then we go and get a toy from the machine, pay for the haircut, and come home.

12:30pm- We're home. I sigh and sit down on my nice couch and take my shoes and socks off because my feet are hot, and watch Dora and Diego. Once they're done, and I eat some applesauce for lunch, Mommy brings me upstairs, changes my diaper, reads me a story, and puts me in my crib. She has a good memory- she even remembered I need my socks back on to sleep- they're already in the crib, waiting for me. I can't sleep without them, no matter how hot it is- my feet feel too open without the socks holding them in!

****************

Yeah...it's now 2:30pm, and he's been in for a nap for about a half hour. This afternoon, we're going to the library, which he likes.

Stuff

I have a cold. Thanks, Frank, for coughing in my face for the last two weeks.

Homecoming at our college is today, and after that, we have a birthday party for the one-year-old daughter of a friend of Darrel's from high school. We don't get to see them much- we've never even met the one-year-old, actually- so we're still going to that, but we've bagged Homecoming, because I don't think I could take that long of a day. (The friend and his wife live in south Jersey, easily a two-hour drive from here.)

So, to prepare, I've started packing the diaper bag. We have to bring food for Frank everywhere, because he has two food problems: he's highly allergic to milk and eggs, and anything with even the tracest amount of either in them, and he has sensory processing disorder (SPD). SPD basically means his senses work too well. Some kids with SPD are super sensitive to sounds, some to light, and some have problems with tags and seams in clothing. Frank has problems with anything oral. He was diagnosed at age 17 months because he was refusing to eat. Seriously. He ate like three different foods, and would refuse to eat anything else. i got all kinds of conflicting advice. "Leave him in his high chair with an unfamiliar food- when he gets hungry enough, he'll eat it." Um, no, I tried that, for well over two hours, and he didn't eat it. And he was starving, I know it. "All toddlers are picky." Yes, but one-year-olds are not. And how many babies, when they start crawling, do you know that will never ever put a single thing in their mouths, ever? Frank never ever checked anything out orally, even teething rings- he would chew on his fingers when he was teething! Frank also has had problems with tolerating anything gooey on his hands, from glue to fingerpaint to food, but that problem is MUCH much better than before- he now plays with glue in school!

We started with Occupational therapy (OT) in February, and, to be fair, Frank has made a lot of progress since then. He now eats several different things, and, as I said before, he is much better about things on his hands. We're currently working on getting him to eat vegetables, at least a few, as he currently eats none of them, except for, ocasionally, green beans.

It's very frustrating, because not a lot of kids have been diagnosed with it as yet, and even I admit it's a little weird- how can you not want to eat?? People think I'm pathologizing normal toddler behavior when i explain it to them. I really wish it were that simple. My mother says I have to learn that not everyone is educable, and that I don't have to explain the whole thing to everyone. I guess, but I figure the more people I explain it to now, the less people will think Frank is weird with food when he gets older.

In the meantime, we have to pack his food wherever we go- between the SPD and the food allergies, we assume he won't be able to eat anything anywhere we go.

I keep telling myself that in ten years, when he's going through puberty and eating us out of house and home, I'll look back on all this and laugh. So far, though, it's really not that funny.