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!

The State of the Blogger

Hey People. I’ve missed you all! I know it’s my own fault, but sometimes, ok, many times I’ve passed by here not knowing what to post. Not wanting to just put down words for the sake of just having a post. That’s disrespectful of you and your time. I haven’t had any excellent recipes lately. No massive spiritual insight. Jim’s still working, thank the Good Lord. We’re still afloat. The kids are reasonably healthy, having a small stomach bug and a cavity. I have a new client starting on Saturday.

There. That’s the last two and a half weeks. Aren’t you edified?

One thing of note, I guess. As of tomorrow I will have 9 weeks of sobriety. That’s a satisfying number. I emailed the elder board and our pastor and asked to resume my deacon duties if they approve.

Our church is going through it’s “re-launch”. It’s been challenging with a different format, changing the way we worship, meeting expectations etc. But it’s also been nice to see visitors in the pews and someone, GASP, raising a hand during worship time.

You know, for YEARS I didn’t use my musical gift. I sat with the congregation, whether by my choice or someone else’s, and soaked up and enjoyed. On the one hand, there are times that I miss that–being able to get lost in worship. But on the other hand, being able to actually USE my voice and my piano playing for God’s glory is amazing. Now, the piano ain’t nearly as good as the voice, but it’s decent enough. My wish each week is that I don’t get in the way of the congregation worshipping.  I don’t want them to focus–for good or for bad (i.e. “wow, she has a great voice!” or “wow, she really messed that up” or “boy, I wish we could have someone else up there!”).

I know some of you help lead worship. Are you able to worship at the same time?

Keeping Count

With Jim traveling so much, I find myself constantly counting (ok, he’s been in South Carolina for three days. That means we just have two more to get through and he’ll be home!).

The first three weeks with NH were pretty ok. Really. Then we had a week where he worked in PA, although we didn’t manage to see him that much. He’s working days at an office and evenings from his home office (which, by the way, is in the garage where it’s quiet!).  This week it’s SC and next week it’s NH again. We talked for literally five minutes total yesterday–a very brief good morning on his way to work and a very brief good night before I went to bed.

It’s starting to get more difficult. We’re missing each other–even just the physical presence of each other. I miss having his parenting to help out. I miss cooking for someone who appreciates it. How in the world do you single moms do this??

I’m keeping busy. Karate, bless its heart, is helping. We’re doing three times this week and next so Catie can test for gold belt. We thought she’d test next month, so we’re having to play a little catch up with the things she needs to know (Student Creed and 7 Home Rules). Hey, I don’t think I’ve ever posted the creed. I really like it (by now I know it by heart!)

To build true confidence through knowledge in the mind, honesty in the heart and strength in the body. To keep friendship with one another and to build a strong and happy community. Never fight to achieve selfish ends but to develop might for right. Pilsung! (which means certain victory).

I’m meeting today with a financial planner. We have a 401k from his old work, but need to start thinking about how to plan for the future now that he’s self-employed.

If you are a praying sort, please keep us in your prayers. I really miss my husband.

7 Quick Takes Friday

1. Hello All from weather-confused PA! We’ve had sunny and 80′s and yesterday morning had snow. I admit to looking forward to late April and May, where it’s just warm spring instead of weird spring.

2. Jim is asleep in his own bed right now, and all is right with the world. Ok, my world. Week 2 of New Hampshire is finished. We definitely have one more week; after that we don’t know what’s going on. I’m ok with that. With two weeks under our collective belts, I know we can handle more if necessary. Sure, the single-parenting aspect gets old. I can’t imagine how military families do it–my hats off to you men and women who hold down the home forts for upwards of a year at a time while your spouse serves.

3. In Boo-Boo updates, Laura is able to make a loose fist and doesn’t need the splint anymore. Bennett seems to be on the mend as well, so we’re ending the week much better than we started it.

4. With having karate during the week, we’re back to “movie night” on Fridays. Last night we watched Despicable Me, which was excellent. Tonight is Mega Mind, which I think will be somewhat similar. I think they’re ready for Indiana Jones, but Jim says no–those melting faces at the end would be too much.

5. Our church is going through a lot of changes–leadership, name, structure…just a bunch of things going on. For someone who isn’t overly fond of change, it’s a lot to deal with at once! I keep repeating “Change is good. Change is good. Change is good.” to convince myself to be more comfortable.

6. Freecycle is such a great place to get rid of things you don’t want and to find things you need. I’m much more of a get-rid-of type, but this week I scored twice: sparring pads for Bennett and snowpants and boots for Laura for next winter! WooHoo! Free stuff that we actually need!

7. As of today, I’ve been sober for four weeks. It’s been good. Not that I like to, but I wonder if sometimes it’s not a good thing to fall flat on my face. It reminds me–brutally–that I can’t do this on my own. That I am powerless and need God to get through this thing called addiction. Long-term sobriety is excellent and wonderful and I love it, but one can get, shall we say, a little cocky. Which is stupid.

And on that note, I’ll wish you all a great weekend. If you have one, go and hug your spouse. Just because you can.

Halfway

Jim was in New Hampshire (previously posted as CT, that was incorrect) last Mon, Tues, Wed. This week he drove up Sun afternoon and is coming home very late Thurs. Next week he’ll do the same as this week. So, roughly speaking, we’re halfway through.

We’re managing. Last week was, honestly, fine. We did karate on Monday and Wednesday and managed to fill the time well. This week is a little on the rough side. Friday night Laura broke her left pinky (spell check didn’t recognize pinky!) and then she came down with a nasty cold. Sunday Bennett was climbing a tree and the branch under his feet broke and he was left hanging abruptly, which pulled his pectoral muscle. He’s been in a lot of pain ever since. So two are down. But on the up side, we found out that Bennett can take pills, thank the Good Lord, and even Laura’s finger seems to be better.

We started Catie with karate, which she adores. She’ll get her white belt tonight. She’s by far the littlest one in the class, and is just so CUTE! Mr. PJ calls her “Catie with a C” because there’s also a “Katie with a K”.

Skype is also a Very Good Thing. It’s helping the kids to SEE Daddy, which helps them not to miss him so much. It helps me, too, yeah. Nothing compares to being able to hug and kiss your husband, but seeing is way better than just a voice.

Time to get them off to school! So, I can now say that even though it’s a mixed blessing having Jim traveling for work, I’m able to be thankful for it.

 

Seasons of Friendship

I’m meeting an old friend today for coffee. She and I were very close a long time ago; she was even a bridesmaid in my wedding 15 years ago.

10 years ago she left for the mission field. Almost 9 years ago I had a whole passel of children. The friendship, without careful tending, changed.

I’ve prayed about this time together. I don’t want it to be awkward or uncomfortable, but I’m aware that it might be. She and I never had that “pick up where you left off” kind of friendship. (Aren’t those nice?) We might fumble for things to say outside of the “tell me what you’ve been up to” layer.

I used to have many close friends.  In high school there was a group of four of us (we called ourselves the four mouseketeers, yes, we were silly). Through Facebook I keep in touch with two of them, but am only somewhat really in touch with the third. In college I had an extremely close friend. Unhealthily close. Eventually I had to stop being her friend because I couldn’t handle the drama anymore. That was hard. I had another friend after my children were born–she also had triplets and was such an encouragement to me. At some point she stopped answering my calls. I’ll never know what happened. That was hard as well.

Currently I have several good women friends, but no CLOSE friends. I just remarked to Jim yesterday that he’s my best friend. And that’s not a bad thing. But let’s be honest. There are just things you can talk to with a woman that hubby has no desire to talk about!

I do believe that there are often seasons of friendship for women. We have friends when we are single, different friends when we are married but have no children, and still other friends when we add little ones into our lives. There are sometimes very special friends that are lifelong–that transcend the seasons. My mother has been friends with someone for almost 70 years. Wow! Now that’s amazing!

You know what? If I had to pick someone other than my husband that I’m closest to, it would be my mother. I talk to her almost every single day of my life except weekends when we’re just so crazy around here. Other than when I was a teenager and we fought a lot, she and I have been fairly close since I was in college, and especially so since I’ve had children. There hasn’t been and won’t be a season to our friendship. She’s one of the reasons I wanted to have a daughter so badly–I wanted to be adult friend with her. And now I have two!

How about you? Do you have lifelong friends or do your friendships have seasons?

Changing House Hunting Gears and FD

So yesterday Jim and his mom talked about house stuff. Which we talk about almost every single day of our lives. The end result, FOR NOW, is that we’re going to take a break and talk to some contractors about the work we want done on our home if we don’t move. Like a garage and a mudroom, new windows (sorely needed, you can see daylight around a few of them) and new siding. If the numbers from those contractors look pretty, we’ll stay here a few more years and THEN do all this crazy stuff again.

I’m of two minds. I enjoyed the hunt. Usually. Unless I came back from a long day with nothing to show for it. Then I was just tired and discouraged. But I was also–as I’ve said repeatedly–overwhelmed by the amount of work our home needs to be put on the market. If we wait a couple of years, that gives us a couple of years to get it all done instead of a couple of months.

But it also feels like a certain family member wins because we’re not buying.

And speaking of Family Drama, we are celebrating Christmas and birthdays with that side today. I will be seeing the lead actress in the drama today. I learned a new word yesterday. Frenemies. When I asked Jim what it meant, he said you act like friends but are really enemies. I said, Oh, like the lead actress? And he agreed. Do I hate her? Well, no. I’m not one to exercise that emotion. If everyone is God’s child I’m not going to hate them. Have I forgiven her? I guess. Do I want to spend large amounts of time in her presence today? Um, notsomuch. But I love my MIL, so I will do this for her.

Big Week for Us

We have a fairly important week at our home. Tomorrow is the district spelling bee featuring Laura. Friday is the day where we come up with the final plan for Ethan’s in-home therapy. We’ll have lots of people here on Friday morning and will be filling out lots of paperwork. By the end of the month we’ll have a mobile therapist in our house, helping Ethan hopefully respond appropriately to his siblings instead of hitting/kicking/hurting them. I’m looking forward to both tomorrow and Friday, and am hopeful for a positive outcome for both, as well!

Cooking in My House

A pictorial description of what it is like to cook for my family.

Credit goes to: www.closetohome.com

Forgiveness

I have made mention of the Family Drama–which has died down a bit because we aren’t actively talking about moving–in previous posts. I have not gone into detail out of obedience to my husband’s wishes. I don’t regret that one bit. I sometimes go back and read posts and don’t really think I need to be reminded of this particular thing.

Anyways, the Family wants to see us for Christmas. And I’m swimming through deep waters, trying to get to the shores of forgiveness. Because, I guess, I’m still not there.

I haven’t struggled this much with forgiveness ever. EVER. If it were any other people, I could walk away and just not have anything to do with them. But this is some of my husband’s family, none of which are believers in God. This doesn’t excuse the things they said or did, but it DOES put the onus on me, a Believer, to show them God’s love.

Which I’m finding isn’t that easy for me. As the bible talks about, even the heathens are kind to those that are kind to them. But loving your enemies, well now, that’s the way that God works. I know that forgiveness is not something ones has to FEEL. It’s a decision ones makes, in ones head, and then abides by, to not make the other person pay for what they did to you. It doesn’t make it right or ok. I think I make that decision, but then find myself still HERE, not moving forward and certainly not wanting to share any farce of Christmas with them. There is no admittance of wrongdoing on their part, no willingness to find a middle ground. So it’s up to me to come the whole way. Which forgiveness would allow me to do, I think.

I’ll be spending a lot of today in prayer and ask that you would join me on this particular topic.