Wednesday, May 26, 2010

Caution Beware: "Winging It" Can Ruin Your Vacation (or Not)

















Recently, I went to Sesame Place for the first time this season. I had gone last year but did not write about it in the blog. I think it was just too traumatic for me.

To make a long story short, last year, while visiting my brother in Philadelphia, we took the kids to the amusement park as a last minute decision. I let my brother lead the way and he suggested that I not bother with getting special "I'm-disabled-so-let-me-cut-the-line" wristbands because it wouldn't be crowded. I didn't have time to call Sesame Place to see what was required and so we just sort of winged it but when we got there, the lines were huge. There was even a line to park the car.

Note to self: Do not ever wing things - not with YOUR kids. Never Never Never, okay? And if you must, please make sure there is someone to catch you if you fall.

This was the problem with the last trip. There was no one to help me. Kai had Logan but Spencer was the extremely difficult one that day. He wouldn't go on any rides except the carousel. He wouldn't even play in the playground where there was no line and no kids! He cried and cried throughout the day. Also, it was disgustingly hot and humid and I abhor humidity 10 times more than the average person does. Additionally, I was with another family and we only came in one car so I couldn't even just leave. Big Mistake. Huge!

You'd think I'd be older and wiser now but no, not really. What I learned from my last trip out was that I must prepare the kids in advance for things to come. For us, vacations require extra prep work so that it won't turn out disastrous.

I thought that I should also get those wristbands too. I always felt like we didn't deserve them but throughout the past year, Spencer has given me so many little safety scares, a disability pass of any kind seems to put my mind more at ease. My friend Kim tells me that "easier is always better" and she is someone who works very very hard for and on her children to help them grow up happy and strong.

Fast forward to this Spring and I am preparing to go to Sesame Place again. Unfortunately, I have been very busy this month and so I barely prepared Spencer to go, thus not fulfilling my grandmaster plan of preventing the kind of anxiety I saw last year. All I did was show some YouTube videos of a couple of the rides right before we got into the car.

















We were lucky. It was a very cloudy day and the park was not crowded at all. We got our special wristbands and we parked in the handicapped parking spot and things were feeling easy. We saw the carousel and Spencer said that we didn't want to ride it but he didn't have much of a chance to complain because I just walked right in without waiting on line. We rode it three times in a row and he finally started to feel a bit at ease.

We moved onto other rides and I tried to do the same formula then. Ride the ride three times in a row and by the third time, he'll start to enjoy himself. However, at this ride, the line seemed longer and our cutting the line seemed quite noticeable. I felt uneasy about it but what could I do. This is the way that my son will enjoy this park. We must pick just a few rides and just ride them several times. We can not roam around the park and just pick what grabs our eye. Additionally based on each child's sensory needs, perhaps even 50 percent of the park's attraction would be useless to them. I think I can estimate that Spencer can only enjoy about 25% percent of that park.

Nevertheless, to the staff and other park-goers, we may have looked like we were abusing our privilege by camping out at a ride for three turns but that is the only way my child will come to enjoy this park. I have a feeling that some of these workers do not know this so I have decided to write to the park's customer service folks and let them know.

I tried very hard not to meet anyone's eyes when I made use of our magic wristbands. I imagined that no one knew why we were there. It is not as if Spencer is in a wheelchair. I think maybe next time, I will have him wear a shirt that sports the logo of a national autism organization. Perhaps that might give others an idea why I cut the line even though Spencer is not diagnosed with autism. I am sure that my cutting the line aroused at least a bit of ill will. I did hear someone telling their child that "you have to wait on line just like everyone else," and I wondered if that was directed towards me.

By Spencer's third ride, it was apparent that he thought riding was a good experience so I took him to a spinning teacup ride and I had him wait on line for the first time that day. It was then that I figured out the best reason for the wristbands. That is, the wristbands are for the caregiver as much as they are for the child. I had trouble keeping Spencer on the line and keeping his body safe as he waited. Sure, he waited on line just like everybody else but I was quickly losing my patience and began to understand why I hated my last experience there. Keeping him "in line" while waiting on line is so draining. I think I'm entitled to not have amusement parks kill me while I'm trying to show my kid a good time.

I would have tried to go on more rides but clouds in the sky did fulfill their threat to rain on our afternoon. I was sort of happy to leave. We had been in the park for almost three hours and ask any therapist of ours and they will tell you that our kids really can't handle much more than that anyway. Wristbands or not, amusement parks are an expensive proposition for us. We will never soak up the park like other families do. I think Sesame Place does give discounted single-day admission to children with special needs but not to their companions.

Everyone thinks that Sesame Place will be a dry run for us to go to Disney. Those words were ever more clear after our three hour visit to Sesame Place. To make our vacation reach our goals of having fun (all of us - not just the kids) I think we have to do the following things:

1. Pack food to avoid long cafeteria lines. Waiting is more stressful to the parent than it is for the child. However, I will not pack too much water. I will cough up the money for that because that is just too heavy and you never wait on line for water anyway. Same goes for treats. I am also going to look into sit-down restaurants as an alternative to packing lunch for some days. Cafeterias are very noisy and overstimulating.

2. Do YouTube prep as much as possible but save them all in a playlist in advance (more homework for me) so that they can do continuous watching of my hand-picked selection of videos that best represents what they will be doing. If you have a DisneyWorld YouTube video that could help us, please email me the link!!!! please, please!!!!

3. Print out pictures of rides and make a pictorial checklist/itinerary of where to go on each day. This must be completed before we leave and must reviewed consistently prior to leaving. Include Logan in making our itineraries.

4. Print out pictures of the rooms at the hotel. Print out pictures of the hotel. This could be part of the checklist/itinerary too so that we can signify an end to the day at the park.

5. Get a 7-day pass to Disney. The increase in price per day is so small after the third day at Disney. It is better to pay more and do less per day at each park then do a lot at a park for the whole day. I think this is the best way to make good memories for us.

6. Do as much research as possible. Avoid wandering. This will be extremely hard for my easily distracted brain but I will resist the temptation as much as possible. I will however, wander a place only if we've been there before and the kids feel at ease after seeing familiar sights.

7. For Spencer the scared one, I think riding rides once to three times will be good for him. If he tells me that he wants to go but is not wailing then I will try to stay on the rides for another round. If he is happy then that has to mean that I can go and try another ride. I really hope I can follow through on that.

I am lucky this year that Logan is going to a great school because one of his classmates is going to stay at the same hotel that I will stay in (around the same time). I am hoping that they will be able to play independently together and free me from playmate duty for a little bit.

Oh how I wish I could take my teen babysitter with me. Now that would be a real vacation. This is more of a family trip. I still have to cook and do laundry. We chose a place with a kitchen because of Spencer's allergies. I think we'll save money this way as well but this vacation has been hard to accept because we have been paying extra for everything to make this vacation work for us including non-stop flights, an extra bedroom, a kitchen, and even an extended stay so that they can have extra time to practice having a good time. Their "extra" needs spell "extra" expenses but hopefully I will get my act together and fulfill the above checklist. I can't believe how much work I am going to have to do but at this point, I know that if I don't, I will no doubt be adding extra alcohol to my long list of "extra" expenses.

Photo: Like I said before, I will never ever "wing it" again unless I have help. This past weekend, we made a decision to go to the Adventure Aquarium in Camden, New Jersey. This place was amazing. You could actually touch the starfish, stingrays, and jellyfish too (safely). The boys didn't really touch it that much but it was a thrill enough for them to watch us touch it. I told my brother (the pusher to new heights) that the boys weren't good "lookers" but he still kept pushing me to go.

He even bought tickets to a 4-D show which I was also hesitant to do - can you say "auditory overstimulation?" (Spencer is pictured here with his 4-D glasses that my brother pilfered). Logan covered his ears for the first quarter of the show but both of them ended up enjoying it. Hooray, I was so glad to be wrong! I guess the lesson learned is that winging things with special needs kids is okay but only if you have some cushion to catch them if they fall and oh, that cushion can not be you. Then who is going to catch you?

Picture 2: My beloved disability parking permit, valid only in the greatest city in the world. Sesame Place accepted it though. I really fought hard for this little placard. They first rejected Spencer's application but I appealed it. I questioned myself many times on whether or not we deserved one but I felt like I was Spencer's wheelchair even though he is not physically disabled. Without me or a trained grown-up, he can not go to many places safely. If your state or city offers this permit to children with disabilities, please consider getting it if you might need it. It could mean less anger and frustration in parking lots and sidewalks and most importantly, more safe travels and more travels at that!

Monday, May 17, 2010

Happiness Doesn't Come in Pills

















The other day, I called my acupuncturist with great embarrassment and asked her. "Uh, can you help me lose weight with acupuncture?"

I felt like I was drawing a capital L on my forehead (for "Loser") but I had to ask. I have been getting quite desperate.

Why do I need to get help this way? Why can't I just stop eating?

Honestly, sometimes, I still don't feel like I am one that overeats constantly but clearly something is wrong with me. For the past year, I have been doing things like yoga and dieting and still the pounds just stay on. I couldn't figure out why. One of my friends suggested that I go for a run and I know she is right but at the same time, there is something else going on.

My acupuncturist and I talked for a while and then she thought that I still might have underlying thyroid issues even though my tests came back negative. She also thought that the weight gain or inability to lose weight was a side effect of my medication.

It must be the anti-anxiety pills, I thought.

Monday, May 10, 2010

Why Everyone Should Google Their Ex



















On the night of Mother's Day, I had a dream about my ex-fiance. I do not remember anything about the dream at all which is probably a good thing because he and I ended on really really really bad terms when we broke off our engagement just two months shy of our wedding date.

I think he appeared in my subconscious because I was looking for pictures of a dog I used to have and stumbled upon photos from my mid-twenties when I was engaged to someone else. It is funny that I had a dream about him where I could clearly see his face since I actually don't have one picture of him and so I haven't seen his face in years. I am very black and white about break-ups and I throw pictures out. I am never friends with old boyfriends.

The next morning, I found myself googling my ex-fiance to see what he was up to.

Thursday, May 6, 2010

All Showers Lead to Australia






















My friend Melissa asked me if I know "three million people" because she thinks I have connections everywhere. I really don't but I think I do feel very connected to mothers with special needs children. It's funny but while I am sort of shy meeting new people, I have no problem approaching a special needs mom and immediately opening up to her and asking her personal questions too.

I love these moms for the advice they give me. I love them for listening to me. I love them for not judging me. And even when I meet mothers who are still in denial, these moms still have my heart because I know what it is like to be there too.

This Mother's Day, I have a guest post from a special friend who lives over 3,000 miles away from me. I have never seen her face in real life nor given her a hug nor met her children but she knows me and I know her. Her name is Hartley Steiner (pictured) and she is the author of This is Gabriel Making Sense of School and the diligent writer of the blog www.hartleysboys.com. Happy Mother's Day everyone!- Jenn


“Do you want to go to Australia with me?” My husband asked casually while I stood at the stove cooking the taco meat for dinner the other night. Such a ridiculous question didn’t warrant an actual verbal response, so I just looked at him out of the corner of my eye and gave a sarcastic smirk. He smiled, and said, “I am being serious. If you and I both start working on it now, we could find someone to take care of the kids for a few days and you could come with me to Australia in June.” He really was serious. And you know what, I wanted to go.

It isn’t going to surprise anyone to find out that spending a week away from our kids is something that we have NEVER done – heck we haven’t even made it 48 hours away from our kids in the last seven years. SEVEN YEARS.

Normally when I get asked by friends or relatives about traveling for an extended period of time, I always say my dream is to ‘be away from my kids long enough to miss them.” And it is true. The kind of stress I am under every single day as a special needs parent is not the kind that dissolves with a 20 minute shower. Not even close. And I spent years using that excuse to justify not spending any time taking care of myself.

But that changed about a year ago.

The light bulb went on when I stepped on the scale last spring – and well – let’s just say that instead of displaying a number, it actually said, “One at a time, please.” That was the first sign that I had stopped making time for myself.

The other signs were equally as disturbing; I was eating horribly (what my kids left behind, or fast food drive thru), wasn’t getting any exercise (chasing Matt should make me thin, but no such luck), hadn’t been to the doctor in years, never mind the dentist, and was down to having my hair cut 2 times a year at best, no matter how awful it looked. I would NEVER accept those things for my kids, so why was it OK for me?

I realized then that respite time had more to do with how I was treating myself – that taking the 20 minute shower was symbolic of self value and, more importantly, a stepping stone on the way to Australia. (OK, so I didn’t actually know the whole Australia thing then, but I knew it was a stepping stone towards something.)

I made a commitment to treat myself better. To treat myself, my health, my body, my mind, all of my needs, as if they were as important as my son’s needs.

The irony is that because we have special kids, we somehow have convinced ourselves that taking care of our own personal needs is a luxury. It’s not a luxury. A Mercedes Benz is a luxury. A Rolex is a luxury. 1000 thread count sheets is a luxury. Taking a shower, spending time with our spouse, or even going out with our friends is not my definition of a ‘luxury’.

The well kept secret here is that we can choose to take care of ourselves AND our kids.

I started my new self-care campaign by committing to getting myself a shower, if not every day, hopefully every other day. Do you think that was easy? NOT EVEN CLOSE.

My choices were to either, a) awake before my kids like my husband does by getting up and into the shower before 6am or b) find a way to distract my youngest son Matthew while the older boys were at school, and jump in then.

Now, I am not a morning person and I don’t drink coffee because I can’t stand hot beverages, so that ruled out option ‘a’ pretty quickly (I may just be the only SAHM on the planet that doesn’t sip a latte every morning, but thus far, Starbucks hasn’t seen a dime of my money).

This left me choosing option ‘b’, which requires a great deal more creativity and even a tinge of daring on my part. Matthew, as much as I love that small child, is a mess waiting to happen. Which means, no matter how well laid my plans are, no matter what awesome ‘new’ show I have recorded, no matter how many bribes he has in front of him, he will be NO WHERE near the spot I left him when I get done with my shower.

But, I am willing to take that risk.

And when I get out of the shower, wrap a towel around my head, and run through the house in my underwear surveying the damage he did in mere minutes, I remind myself that it was worth it. Because I am worth it.

But showering was only part of the plan.

After I had showering under my belt, I began to feel better about myself – dare I say even less stressed, and that feeling was addictive.

Soon I turned my new self-care addiction into going out for dinner with my girlfriends, attending more support group meetings, the occasional trip to the gym, going to the doctor, getting my hair cut, replacing 10-year old clothes with new ones, and going on dates with my husband. I even painted my own nails at night when the boys were asleep.

It was a change of attitude really: A change of perception about me, and about my life. It wasn’t (and isn’t) about just being away from my children, or doing frivolous things, but rather about allowing myself to see me as more than just a SAHM or a Special Needs Parent. Those are only part of who I am.

Taking time to out to take care of my needs allowed me to remember that I am a whole person, not just one label or another.

I spend a great deal of time talking about my family on my blog and in my real life, because I love them and they are truly the focus of my life every day.

But they aren’t the sum of who I am. I am much more. I love to laugh, can bake amazing desserts (cheesecake and lemon pound cake are my favorites), still listen to rap music, enjoy photography and have been infatuated with the ocean since I was 9 years old and decided to become a Marine Biologist, despite getting decompression sickness while SCUBA diving and going through hyperbaric treatment in Hawaii when I was 14. I bet you didn’t know those things about me, right? Truthfully, I’d begun to forget about them myself.

The bottom line here is this: It is OK that I want to go to Australia.

Two years ago, there is no way I would’ve been able to admit that and honor that I needed time for myself and that it would be OK to leave the kids for a week (Although I have yet to master the logistics involved in leaving them for an extended period of time). I know now, that taking time for myself and for my marriage will make me a better person, wife and mother.

And I have proof of it in my daily life – in the way I am able to be with my kids, and honor their challenges. In the way I am able to see my husband and support his dreams. And in the 20lbs I’ve lost without so much as being on a ‘diet’ this last year. Turns out taking care of your own needs is a good idea – and it is never too late to start.

Now, I know all of you are not going to read this and run off to Australia – but my hope is that you do run off to the shower, because as you now know, all showers lead to Australia.

-- Hartley Steiner, Australia bound mom, special needs advocate, blogger at www.hartleysboys.com and author of This is Gabriel Making Sense of School.