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!

Speech Impediment

Backstory Part 1. Ethan has difficulty with saying TH (he says f) and L (he says w). He practices a lot and sometimes gets them right and sometimes gets them wrong.

Backstory Part 2. I told him about Elmer Fudd and his difficulty saying R’s (wascally wabbit!). On Saturday he said “someone should work with him to fix that.” (like a speech therapist). So cute!

So this morning we were sitting at breakfast and I was hurrying him because we were fairly late and the bus was coming soon. I said “We’ll have to be like Speedy Gonzales!” and then I explained who he was and that he was always running away from Sylvester, who said things like “Sufferin’ Succotash!”, except he has a lisp and says “Thufferin Thuccotash!” instead. Ethan thought that was pretty funny and repeated it.

Remember the backstory part 1? Instead of Th we get F? You say it out loud and see what YOU get!

The Day Before La La La

Today is Labor Day. I’ve been laboring on laundry all yesterday and today (7 loads and counting and it’s almost all children’s clothes!) and not QUITE counting down, but getting close.

I’m doing all this laundry because tomorrow is one of the best days of the whole year. Almost up there with Christmas, but that’s the Lord’s birth and thusly gets top billing forever. Almost up there with Thanksgiving, but that has pumpkin pie and whipped cream and thusly gets 2nd to top billing. Almost up there with the day I go to the spa and get a massage but that, well, that’s obvious. So, ok, the FOURTH best day of the year.

Because people, THEY ARE ALL GOING TO BE IN SCHOOL TOMORROW! Not just one, like we had in the middle of June. Not just three, like we had last week, BUT EVERYONE.

ALL FOUR OF MY CHILDREN WILL BE OUT OF THE HOUSE! For a LONG TIME!

I know I have completely offended those of you who homeschool and manage to love your children all day long. But Oh My WORD. These past few weeks remind me of why I love those big giant (and also short) yellow buses. Because oh my WORD, does Ethan need STRUCTURE!! By the end of the summer he just can’t handle all this time. He has to yell and bug and hit and annoy. Not just the kids but also Jim and me.

But tomorrow he will be in a “structured environment” for more hours of the day than he’ll be at home. He’ll leave at 7:05 am and get home at 3:30pm. And then we’ll have homework and dinner and a little playtime and it will be time for bed. And there won’t be a whole lot of time leftover for fighting.

Happy Sigh. Peace is good.

Plus, as an added bonus, I’ll be back to my regularly-scheduled blogging. I’ve missed you all. Have you missed me??

Happy 10th Birthday to My Miracles!

The Big Double Digits is here! Happy Birthday to Bennett, Ethan and Laura!

This is a repost of the email I sent out to friends and family the day I got home from my 2 week hospital stay (11 before and 3 after they were born)

Hello dear friends.

Some of you will know the following, but many of you don’t, so I’m sending to all.

I haven’t emailed an update in a long time because I went into the hospital on August 14th with a ruptured sac. Baby A, Connor John, had broken thru. Our local hospital didn’t have the nursing staff for 24 week old quads, so I was sent to Christiana hospital in Delaware (not even in my state). It was touch and go for a few days–I was on Magnesium Sulfate (very nasty), but came through ok. I settled in for the long haul of bedrest.

Saturday the 25th started like any other day. We monitored the babies around 10-10:30. Then I started having contractions. Before I knew it, they were 2 1/2 minutes apart and I was 4 cm dilated. They took me in for a c-section 2:00 ish.

Connor John came at 2:08 pm weighing 1 lb, 9 oz.
Bennett Quinn arrived at 2:09 pm weighing 1 lb, 11 oz.
Ethan James came at 2:10 pm weighing 1 lb, 11 oz, and
Laura Grace finally got pulled out at 2:13 pm weighing 1 lb, 10 oz.

They were immediately whisked away to the NICU admittance and I went to recovery. 5 hours later I was finally able to see them. Bennett, Ethan and Laura were ok, but Connor from the very beginning was having more problems. To shorten the next part of the story, fast forward 3 more hours to 10:30 pm, when the Neonatologist comes up and tells Jim and me that Connor will not make it through the night.

Jim went down to spend some time with him (I was still very drugged and was in and out of consciousness). He came back upstairs a little after midnight to see if I wanted to come downstairs. The NICU called and said that he needed to come downstairs NOW. So I gathered myself and moved onto a gurney and went to the NICU to hold my firstborn son and cry. He was SO tiny!! So fragile!! We cried so much! While Jim held him, he quietly left us to be in the loving arms of Jesus. Saying goodbye was the hardest and most emotional thing I have ever done.

Coming home today, Tuesday, to our playroom full of baby things, many in fours, was extremely difficult. It will take some time before I can face going in there without crying.

Our other three, like typical preemies, change from day to day. The two boys have heart murmurs, but are responding to meds. Laura was doing the best, but is now on a special ventilator called an oscillator. It pumps 300 breaths per minute into her tiny lungs. But all are holding their own. I have three journals to track their day to day improvements, which will be encouraging along the way.

The joy and hope of my three living children tempered with the sadness and grief of losing our son is a very difficult place to be. We are in the process of trying to decide whether to have a funeral and burial or cremate. I never thought to be in this position. Only God is sustaining me now, I can assure you. Jim is crying and grieving as much if not more than I am. We can only cling to each other and be there for each other as we work our way through this difficult time.

We still appreciate your prayers for both Mommy and Daddy and our three precious children. They will be in the NICU for at least 10 weeks, and we will be traveling 45-50 minutes each way to get to them. I will also be pumping to provide breast milk for the babies, so life is already revolving around them.

As I’m sure you can tell from the whole tone of this email, this is a very difficult time for both of us. Thank you all for your support, prayers and understanding. I will not be on email that often, and the phone will be answered as possible. Visitors are welcome, but we ask that you call first.

Much love,

Tina

7 Quick Takes Friday

1. So if you look carefully, you will see no posts  between LAST Friday’s 7QT’s and today’s 7QT’s. See #1 from last week? That stomach bug? Ethan left school last Thursday and didn’t go back until this Thursday. Bennett left school on Monday and is going back today. Jim has it. Having lots of people around during the day–a time when I am normally quite alone–makes for not much regular stuff happening. I apologize. However, to be fair, not a whole lot happened anyway. Just lots of changing of Ethan’s pullups and being very grateful that Bennett is potty trained and, of course, so is my husband. As a side note, the boys are 9. Ethan is special needs. Pullups are a part of our lives.

2. Back story: Jim quit his job back on November 5, 2010. He talked to many recruiters. One put him in contact with a consulting firm, who thought he was perfect for a job at one of their clients. The job would start the middle of December. Oh, wait. No, now it’s the beginning of January. Hang on, sorry, no, it will absolutely positively be the beginning of February. Oh, um, sorry, but the job fell through. Yes, folks. 3 months and we are back to square numero uno. He’s doing some “side work” (helping with someone’s computer, painting a kitchen) and is recontacting all those recruiters. Please pray, will you, that he finds a job–any job!–SOON.

3. I visited my local post office the other day and decided to take a look at the bulletin board on my way out.  There are all sorts of things posted there (my business card included). I hit a jackpot–there is a card for uninsured and underinsured (of which I currently am a member) for 24% off prescriptions sponsored by the National Association of Counties. Well, Thank You NACO! I just checked this morning and my local pharmacy, whom I love, accepts the card!

4. Bennett is finally not the last in line at karate. (for those not involved in it, they line up in order of belt color–highest to lowest) There was a new boy there who just tonight tested for his white belt–Bennett will test for his gold belt in two weeks. I’m slightly nervous. Apparently the belt-testing night is two hours long. Yikes! I thought he just did it and we could leave. Nope.

5. May I express to you how lovely it was to be HOME ALONE today? The peace, the quiet, the lack of TV, DS, music, fighting, running around, calling “mom!” etc was, quite simply, DIVINE. I’m very thankful that everyone is back to normal and that the fringe benefit is that everyone goes back to their regularly scheduled life.

6. Tomorrow we are celebrating my MIL’s birthday. It’s a banner one, and no, I’m not rude enough to announce it, but it will be friends and family coming over to her house and bringing appetizers and cake. Should be an excellent time of hanging out and eating great food.

7. I looked out the window today and I could actually see GRASS! We had rain and a few warm days and then back to frigid, but with only 5 weeks left until Spring, oh, I really hope that we’ve seen the last of the snow storms. Winter is my least favorite season, although, I must say that having a mudroom made this winter less annoying than any other year before. And in case you read over that sentence too quickly, I will say it again.

5 weeks until Spring!

A First

Ethan is blind. For any of you who may have missed this, I want to make that clear. 100%, pure, unadulterated BLIND. Not vision impaired. My son cannot see a blessed thing.

Also, he looks like it. He has, for the past 8 or so years, pushed his eye balls back into his head. It’s gross and I hate it. We tell him ALL THE TIME “Ethan! Stop Pressing Your Eyes!”. So far it hasn’t worked much. Here’s a current pic of him:

See??? He LOOKS blind!

With that background, let me proceed with my story. We were in WalMart today doing our weekly grocery shopping. Ethan was off for Columbus Day, so he came with me. It was fine, until we hit the bread aisle. We were heading west and a woman and her husband were heading east. This woman walked up to Ethan, all but yelling, “Can you see? Can you see?” in a very strange tone. He had no clue she was talking to him, he was just walking towards the rolls like I told him to. I looked at her and said “No, he can’t”. She stopped and looked at me, ” I thought he was pretending!”  “No, he wasn’t. He’s blind.” and I walked away and got the rolls.

I’m guessing she thought she was funny. I don’t know. I found it extremely rude and I was just dumbfounded for the next three or four hours. In all my travels and interactions with the public, no one has ever said anything to Ethan like that. There have been the inevitable questions to me “can he see?” or the outright looks that children give him before they figure out that yeah, something’s different.

I know I’m probably blowing this out of proportion, but man, it really took me by surprise!

Encouragement

Just got home from Overbrook’s Parents Day. I didn’t go to the “meeting time” and tours (this is my 7th parents day!) but instead went and saw Ethan in the pool and then went back to his classroom for a spelling test and then onto lunch. I got a good chance to talk to his teacher.

Background: Ethan repeated a year in Overbrook’s preschool program, which we called kindergarten. Since his brother and sister are in 4th grade, we say he’s in 4th as well.

At lunch Miss Peggy (Ethan’s teacher) and I were talking about Ethan and his abilities. She thinks he needs to go to their middle school program next year (effectively skipping 5th grade) because she doesn’t want him “pulled down” by the other kids. When I literally gaped at her, she said “What you don’t understand is that there is no other kid like Ethan in the elementary program!”

!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Time She is a-Flyin’

I just looked at my last post’s date and it was 8 days ago. In blogland that’s like three months and people have now forgotten me and don’t even bother to check their reader for me anymore.

I’m sorry! It’s SUMMER!

But that, dear friends, is coming to an end. Oh, ok, let’s be specific. Summer lasts for, what, 6 more weeks. Summer vacation, however, has two weeks left. Which means I’ve survived nine whole weeks of it. And still have four children. That’s pretty good in my book!

Ethan and I start Hershey in three days. I’m being “cautiously optimistic”, meaning I would LOVE to have him come home eating and chewing and all that, but am afraid to get my hopes up.

I’ve had two days in a row of playdates with good friends and their kids. It’s been GREAT having grown women to talk to while my kids have a great time playing.

Tomorrow I go shoe shopping with the kids. Highs and lows, people. Highs and lows!

We’re making the most of homemade popcorn lately–a little oil in a really big pot, some popcorn kernels and POP! YUM! I like mine either with salt or with salt and a little sugar (try it before you knock it!). The kids love it and it’s so easy and cheap! SO MUCH CHEAPER than microwave stuff and you know what’s in it.

I’ll be doing only quick drive-by posts if any at all the next two weeks. If nothing else, I promise a full in-depth recap of our adventure.

Happy Chewing, everyone!

We Have a Date

Hershey emailed this morning and gave me the date that Ethan will start at the feeding clinic–August 16th. We’ll have five days that week and four the next (missing Friday due to the triplet’s 9yr check up).

I’m happy to have a date, finally, but starting to get a tiny bit overwhelmed at school starting in five weeks and being gone pretty much all of the two right before it starts. I’m opting to try and drive up and back each day instead of staying at the Ronald McDonald house. I just don’t want to be away that long–10 hours is enough each day, thankyouverymuch.

In construction news, we painted and put flooring down in the mud and laundry rooms. They look very nice, but still need trim and doors and appliances (from the basement). The guys are working on the east wall today–windows and siding. The insulation got blown into the ceiling of the garage. Things are starting to get finished. It’s WONDERFUL!

Ethan Funny

Yesterday Jim’s mom was over for dinner. We put Ethan in between her chair and mine. He kept banging on the wood of the chair, even after several requests to stop. I asked him to leave the table. He did so, but had a tantrum. At that point I excused him to his room. On the way through the living room he bumped his booster seat with his foot. He stopped, picked it up and yelled at the top of his lungs “AND NOW I’LL THROW MY BOOSTER SEAT!”  And then he followed through. We were shocked, but laughing hysterically (but trying oh so much to be quiet about it) because he was so adamant!