Disney with a Blind, Autistic Kid

Subtitle: Wow, we learned a lot!

I have a lot to type about our trip to Disney: the good, the bad, and yes, the ugly. Overall, we had a very good time.  There were some very frustrating moments–and some of them involved Ethan. If we were to do Disney again, which we hope to do someday, we would definitely do things differently from the beginning. But, unfortunately, only hindsight is 20/20!

The one things I want to say to moms of special needs kids who go to Disney is OH MY WORD, GET A GUEST ASSISTANCE CARD! We didn’t get it the first night (I forgot the letters from the doctor that we ended up not needing) and Ethan mostly freaked out, demanded not to be in line anymore, and kept his hands over his ears.

For you fellow SN moms, whatever park you first visit, go IMMEDIATELY to the Guest Relations desk and ask for one. We got letters from our pediatrician about both Ethan (can’t wait in line) and Laura (needs to sit up front), but ended up 1) forgetting them and 2) not needing them. The Guest Relations people believed us. Ethan got the braille guide for each park and LOVED reading the braille/tactile maps, but the GAC saved our sanity and vacation. I completely underestimated how difficult it would be for Ethan. Once we got the card, we went through either the FastPass line or the handicapped entrance. Many times we literally just walked onto a ride with no wait. That helped Ethan (and the rest of us) tremendously!

Overall, we had a very good time, but a lot of it was difficult for Ethan. There’s a LOT of sensory input going on all the time—loud noises, constant motion, lots of people etc. By the 3^rd day (Hollywood Studios), we figured out that we needed to split up and have Jim take the other kids (and his mom) to the rides that they would like and I would take Ethan to the shows and rides that he would like. Trying to do everything together was just not fun for anyone, and we felt pulled in two directions and that we were cheating both Ethan and the other kids.

At our last park, Animal Kingdom, I thought to ask a cast member if they had any suggestions for hands’ on experiences for E. That person spoke to another person, who spoke to another person who was FABULOUS. He got a map of the park and circled stuff that would be good for E. If I could go back, I would ask at every park because a lot of times we were guessing.

There are regular maps/guides/brochures at the beginning of each park, but there are also guides for those with disabilities at guest relations. Those guides give detailed descriptions of each ride and what issues people could have with it (loud, dark, difficult for wheelchairs etc) and where the GAC entrance was. They were invaluable.

We stayed at the Fort Wilderness cabins and that was an excellent choice for us—each one has a full kitchen, so we had breakfast there. There’s a bedroom (with a door) with a double bed and a bunkbed, and then a murphy bed in the living room, plus the couch, so the 6 of us fit well. Disney doesn’t do larger families well—one of the few complaints I had.

Ethan spent much of the week with his hands over his ears—the most “autistic” I have seen him act in YEARS. That first night was bad—I didn’t expect him to be so difficult and ended up frustrated and impatient. After a few days I accepted that he was just going to have a difficult time, and rejoiced when the hands came down and he simply enjoyed something. When we ask him, he rates the vacation a 10 out of 10, which really surprises me. He needed to have way more down time than the others (he spent an evening in the cabin with Nana watching kid DVD’s instead of going to the Magic Kingdom) and was the most ready to come home by the end. Knowing what we know now, we would definitely build in non-park days where we just hung out at the resort (if we did it again, which we hope to sometime in the long-range future)

Oh, and one thing more: He spontaneously potty trained while there! He’s been wearing underwear for awhile, but still pooping in his pull up. While at the cabin he just did it one day and then kept on, even at the parks. And he’s done it since we’ve been home, so I think we’re there. AH-MAZING!

7 Quick Takes Friday

1. TOMORROW WE LEAVE FOR DISNEY WORLD!

2-7. See #1

See you on the flip side, People!

Bathing Suit Shopping, or…My Day in Hell

Let’s start this off with some honesty.

I am short. What fashion people call petite. 5′ 1 1/2″.

I am ample of bosom. 36 F . What bra companies call 36DDD (for some unknown reason)

Due to many reasons, I am overweight. I do not currently know my weight because I lack the intestinal fortitude to get on the scale.

I am unable to fit in last year’s bathing suit because I have gained weight. I figured I would just buy a new bottom for my tankini and be good, but then this morning I tried on my top and, well, was NOT good. I got a pair of board shorts yesterday that fit, so that’s good. I tried to buy a top at WalMart yesterday. NOT GOOD. L/XL did not fit.

So I figured, go to Landsend.com and see what they have. And amazingly, they have bathing suits by cup size, as in DDD!

Except the four tankinis that came that way were on backorder in my size. And none would ship before we left for Disney IN TEN DAYS.

Enter Google. “Tankini Top 36DDD” “Tankini Top 36F”

No, thank you, I don’t want to dress like a streetwalker. Maybe if I was built like the models I might, but I’m built like me and it would not be attractive. Thankyouverymuch.

Oooh! There’s a pretty one! And it’s “only” $54.99 (by far the cheapest one!). I call the 1800 number of the company and hear a funny double ring and the voice who answers is clearly British. Um, where are you? England? Really? How long would it take for this to get to me? 5 to 8 business days? As in, maybe not before I left for Disney IN TEN DAYS!? Oh, thank you anyway.

Sigh. Look some more. Notice that for some reason, many, many companies that offer tankinis in my size are in England. Are English women more amply endowed than American women?

Finally give up. Take Laura to her hair appointment and run next door to the Fashion Bug. Nice young (YOUNG) woman is taller but built like I am. We pick out four tops–Whoa. That’s some cleavage! No thank you, no thank you, no thank you, and no thank you. Try a 16W. Close, but not yet. Try and 18W.

We have lift off! Better yet, we have something that fits, COVERS things and looks decent. It’s still $44.99, which is horrifying, but hey, I GOT IT BEFORE DISNEY!

Countdown

Many days ago, my husband, my Mother-in-law and I made reservations at Walt Disney World in Florida. I would periodically email them with the days left…. “79 Days!” “54 Days!”

Well, we’re to only 12 and it’s starting to get weird. Like, we’ve been planning this IN SECRET FROM THE KIDS for so long that the fact that we leave in only 12 days seems somewhat unreal. We finally came up with the way we’re going to tell them–have them come downstairs at 5:15am and open up wrapped Mickey Mouse tee shirts. Then they will all rush to put them on and get out the door by 5:50.

We’ve ordered groceries for delivery, fanny packs for the kids, and even a new digital camcorder (that was in the plans anyway!), so this trip better not get canceled!

Health Insurance Radar

I’m flying under it, apparently. And not on purpose, either!

Back story: I’ve talked before about the fact that I have Polycystic Ovarian Syndrome, which doesn’t really have anything to do with my ovaries. Having cysts on my ovaries, which are really unmatured ova, is just a symptom of this syndrome, along with hair on my chin, a seemingly inability to lose weight (Dr. Oz has gone on record as saying that for me to lose one pound is like the average person losing three!), wildly erratic periods (brought on my amenorrea, or lack of ovulating), all of which are actually brought on by issues with hyperinsulinemia, or WAYY too much insulin and an inability to process blood sugar incorrectly. If left untreated, I’m very likely to develop diabetes. However, I take medication and (somewhat, except when there’s Easter candy in the house!) watch my diet.

So, all that said, I have insurance, which BTW, was very difficult to get because of this, but that doesn’t cover anything to do with PCOS. No meds, no doctor appts, no tests, nada. They warned me about this from the very beginning.

Except.

They only make me pay for a co-pay for my drugs.

And!

I just got the bill from my bloodwork. Original cost (billing to insurance, of course, which is way more than they would bill to a non-insured person) was $503. My bill–after the insurance company told them “hey, you can only charge her this much!”–is only $41.42.

WHAT???

Thank you very much, insurance company that doesn’t cover my PCOS, for covering it anyway. (ok, except my annual check up at the endocrinologists. That they didn’t cover, but I’ll pay the $71 out of pocket that they are charging me b/c I don’t have insurance covering it).

4 Inches

I measured the pile of paperwork that I removed from my desk, the kitchen table and the kitchen counter. Now, yes, it’s a little spread out, but at its tallest, it is four inches. FOUR INCHES of things I have deal with, one by one by one. Even if it’s just to move it to another pile. For “deal with immediately” “file” “for taxes” etc. It’s 2:39 in the afternoon on a Sunday. I’ll check back in an hour and we’ll see where I’ve gotten. I may even measure it again!

One Hour of Work Later:

A lot of trash thrown out, all filing separated (although not filed yet!), LONG To-Do list made, two bills paid, two Washington DC Field Trip paperwork filled out and money put into envelopes, and am about to start on the annual Medicaid Insurance online. Feeling MUCH better now that I at least know what is in the pile and most of what needs to be done with it. I t measured the “to be filed” pile and it’s 2″ high. None of the to be dealt with piles are tall enough to measure. Whew!

The Light is Bright

when you are on the other side of the tunnel, that is.

After 9 weeks I’m back to being a stay at home mom. Here’s what I learned from the experience:

1. I am not wired to work outside the house all day and then come home and manage to keep up with everything that needs to be done. Laundry, cooking and the occasional clearing-off-the-counters happened. Oh, and I cleaned the toilets once or twice.

2. If I am cheery at work with nice adults, I have a much more difficult time being cheery at home with children who are not so nice. It’s like I have only a certain amount of cheeriness and then it gets used up. And since I’m not going to be grouchy around adults, my family will bear the brunt of it. I didn’t know this about myself.

3. Seeing the house pile up and not having the energy to deal with it made me rather excited about the idea of being finally home to deal with it.

4. I made a better wife than Jim does. Go figure!

5. I look forward, after the children are grown, to rejoining the workforce. I actually like working in an office. I enjoy being administrative help, although I certainly like professional organizing’s pay better! I got many kudos and thank you’s from the people I worked with/for, which was really, pretty darn nice. Families don’t, normally, do that. Jim calls them “attaboys”. They make life a little nicer!

So, all that said, I’m very glad to be at home again. I have a HUGE paperwork pile to tackle, which includes some very important, time-sensitive insurance re-enrollment stuff. I’m happy to finally have the time and energy to do this.

Oh, and one more thing–5 WEEKS UNTIL DISNEY WORLD!!

Two-Thirds

That’s how far I am through my temp job. I enjoy the actual working–interacting with adults, doing adult work etc. But the SAHM part of me really misses how the house used to look and having guilt-free free time. If I’m not doing laundry or something else productive, I’m feeling guilty. I think I need a wife. That would help. I have only three weeks left and am very happy the light is visible at the end of the tunnel and I’ll soon be able to grocery shop on Mondays again. Because Sunday night grocery shopping stinks.

See you all soon!

RIP Winky

January 2001. Jim and I owned one cat. We had no children. We had been going through fertility treatments for about six months with no positive results. I needed something more to love, so we went to our local SPCA and picked out another kitty. She was smaller, grey and tan on top and white on her paws and belly. She looked like someone had dipped her in white paint. She had an eye infection and kept winking with one eye, so the name Winky stuck. (sidebar: I hate coming up with names for animals!) Not even two months later I conceived quadruplets and kind of regretted our decision to adopt her, but we stuck it out.

Winky was the rare cat who liked people–strangers were always friends to her. She was willing to jump up and lay down next to anyone, provided they pet her. She didn’t like being ON you, but NEAR you. We joked that her “love language” was quality time. She was loved by everyone in the family as well as any feline-friendly people because she was so friendly.

Last Thanksgiving we hosted both sides of the family. Everyone noticed that Winky had lost weight. Being that she was quite overweight, I had first been rather happy about this. But everyone was shocked by just how much she had lost. It took new eyes to see what we, living with her everyday, were unable to. We went to the vet, where they did a battery of tests. Winky was not doing well. She was in renal failure, with her kidneys operating with less than 25% capacity. We changed her food to a special kidney disease food and began the wait. Her fur, which had previously been very soft and sleek, became clumpy and dull. She didn’t like to be pet very much. She would eat and drink like crazy, but never gain an ounce, and would pee all over the house. Last weekend she peed six times and pooped once in the playroom. That was the writing on the wall for me. She wasn’t going to get better–it was only going to be a slow decline into a place I didn’t want her (or us) to go. We made the difficult decision to take her to the vet on Friday.

I have only ever once been present when an animal was euthanized, back in 2000 when Jim’s mom’s dog had an attack of some sort and we rushed to the vet ER. I had no particular affection for the dog, but sobbed when she died. This was many times worse.It was, essentially, my cat (Jim being a dog person). It was my decision. I drove her. I took her to the vet by myself so Jim could be home with the kids.

I won’t go into the actual procedure, but suffice it to say that it was really, REALLY hard and I can’t imagine doing it again if and when we need to with Floyd, our other cat. I sobbed the whole evening and went to bed early, just emotionally worn out. It was weird cleaning out the laundry room on Saturday, where her bed and litter box were kept (Floyd goes outside for his bathroom).

The kids seem to be handling it, although Ethan (who DOES NOT like animals) cried last night and said he missed her. We buried her yesterday in the backyard. I was ok for most of it, but cried when Jim started putting the dirt on her.

We have tried to soften her loss by telling the kids that yes, we will now being to look for a dog. I’ve been pouring over local rescues through Petfinder.com and have emailed two of them about sweet-looking dogs.

I don’t know that I can say I learned something from all of this, other than losing a pet is difficult and that I wish their lifespans were longer. I am grateful that we have Floyd that I can love on…I don’t know if he notices Winky’s absence; they weren’t particularly close. But we notice it.

Rest in Peace, Winky. You were loved and we will miss you.

Balance

I’ve been working for 2 1/2 weeks now. I still haven’t figured out how to balance everything–getting ready for work, reminding the kids to get ready, making dinner, doing laundry, finding time for God….that last one has definitely gone completely by the wayside. I originally thought “oh, I’ll have a quiet time at lunch”, but I have ended up only taking  15 minute lunch. When I come home, He’s the last thing on my mind until I go to bed and think “oh, rats, I meant to spend time with You!”. How do I do this? I have a little less than two months left of working and don’t want to ignore God the whole time!