Wednesday, September 25, 2013

Disney Magic

Back in the Spring, a story broke on the Today Show about socialites who were hiring disabled individuals as tour guides to either pose as family members or part of their party so that they may gain faster access to rides and cut their wait time down at popular attractions at Disney World. Being a mom of a special needs kiddo, this story made me sick to my stomach. To think there was such insensitivity and a sense of entitlement in the world - just blew my mind! Being the Disney lovers our family are, we have followed the stories that have been coming out quite avidly. With Disney set to unveil new rules regarding Guests with Disabilities, the web has been abuzz with blogs - some full of speculation and others fact. But, it was the comments from others that got my blood boiling. Things like, "just teach your kids to deal with lines, I manage my 2 year old!" or "if you don't want to wait in lines, then don't go to Disney World". The biggest problem, in my opinion, is lack of understanding on the general public's part both into Disney's policies and into what life is like when you have a special needs child. 

As I tend to not be able to "just let things go", I called Disney up this morning. I asked them about the policy changes and how this will directly impact MY CHILD. Molly has Autism, ADD, Seizures, Heat Intolerance, Sensory Disorder, Developmental Coordination Disorder, and Asthma, with more diagnoses likely after upcoming doctor appointments. Due to all of these conditions and her treatments she also fatigues very easily and is unable to stand for lengthy periods of time. Heat and fatigue mean more seizures and uncontrollable meltdowns. We discovered, very early on, that a lot of these issues could be kept in check if Molly was allowed to stay in her special chair while waiting in line or watching shows. Instead of managing meltdowns and constantly replacing ice packs in her cooling vests, we are able to push her through the parks and wait in lines with her seated. She is able to focus on reading the map or her beloved guide book, instead of falling into people or accidentally stepping on everyone within a certain radius of her. I still carry and manage my 2 younger, somewhat typically developing children. There are still rules and expectations put in place for their behaviors. 

To the people who say, then don't go to Disney if she'll have a meltdown. I ask you, what you think I should do? Should I sit in my house all day, emerging only when you will not be inconvenienced by my child trying to express her needs? Should I not try to make memories for my family that are not filled with hospital rooms and doctor's visits? Is it not fair that I get to capture those happy moments on my kids' faces? My daughter was made different, her brain works differently. She's had people tell her their kids can't be friends with her because she's different. She's been told she cannot do gymnastics like her sister because she's different. She's been told, no - you can't eat that piece of cake or that apple because it's not on your special medical diet. She's been told no so many times in her almost 8 years. She's also been told, yes you have to have another blood test and yes another doctor has to examine you and yes you have to have all those buttons glued to your head yet again. You, the naysayers, have no idea the day to day dealings with my child. You also have no idea the intense planning and saving that goes into a Disney vacation for this family. We only go during cooler months and when it isn't as crowded. This means that the kids miss school - but since Molly cannot handle crowds or heat - we already make this accommodation. We save for years to plan our trip. We don't go out to eat, we don't go to the movies, we tell our kids "no" a whole lot - so that we can say yes to a magical trip every few years - filled with memories and happiness. 
According to Disney, Molly can still stay in her adapted stroller for those rides with lines wide enough to accommodate it. This means almost every single ride in Disney World. She has always waited in these lines and has never been ushered to the front. There are only a handful of rides that I can think of in Old Fantasyland that don't have lines wide enough for the chair. For these, she would have to get a special pass to come back to the ride at a specified time. We've never cut the line. That is a privilege reserved for kids on a Make-A-Wish Trip. These children with life-threatening illnesses  and their families are THE ONLY kids that cut to the front of the line. This past trip, we were waiting to see Minnie Mouse. Molly was in her chair, 3 year old Kennedy was impatient and 6 month old Zoey was crying. We were put on hold so that a family on a Magical Make-A-Wish Trip could hug and take a picture with Minnie. I explained to my child that just like her, that little girl had to go to the hospital a lot and meeting Minnie made her very happy, but that unlike Molly she just couldn't wait today. I don't know if Molly understood or not, but I watched the smile on the Make-A-Wish kid's face and tears welled up in my eyes. Truth is, someday that could be us, making as many memories as possible in our kid's favorite place in the world - but today it wasn't, today we could wait five more minutes to see Minnie, because we had 5 more minutes. 

And so for Peter Pan's Flight, Small World and the handful more that aren't wheelchair accessible, we'll get a Guest Assistance Pass or a regular Fast Pass. The new policy is put into place because people were abusing the system and Disney had to respond in a way that was both fair and still accommodating. It won't make everyone happy, nothing ever does! My concern really isn't for the new policy, it's more for the culture that some people seem to be raising. One that truly locks special needs children into a room and doesn't let them out to mingle with typical citizens. Shame on that culture. Open  your eyes and yourself to the beauty of a special needs child, the gifts they possess and you will feel your heart open with love. For the culture of families that embrace every child, no matter how different, Thank You! Thank you for raising accepting citizens who understand that underneath disabilities and limitations, there are people who all possess a special gift. 

We're planning our next trip to Disney, and it will be filled with accommodations we put in place for our children, typical and special. It will be helped by Disney being understanding and helpful and it would be nice if every single person in the parks just smiled at my daughter as she rides around in her adapted stroller beaming like the princess she is!



Thursday, September 19, 2013

the anxiety attack

Anxiety, you pesky beast. You really do like to strike when least expected! 

That's me on my 1st Birthday with my gorgeous Mom
Baby Amanda
I do find it somewhat amusing that I wasn't able to put the correct name to this feeling I've had my whole life until I watched my own child struggle with her own anxieties. With Molly the world is black and white or more accurately pink and purple. Things are logical, they make sense, there is a why. When things don't fit into her plan, or into the picture of life she has in her head - she will start spiraling. The anxiety she feels over this will set off panic attacks. Her palms will get sweaty, her heart will race, she will have stomach pains, she will cling to me and crawl into my lap. That's the simple part of Molly's anxiety and the part that I finally recognized in myself. What's not simple with Molly is when her tolerance levels are lowered by illness, or seizures, or when unknown stimuli set her off. What's not simple is that she doesn't have the appropriate language or understanding to tell me what is going on. So, she pick her nail beds raw, she picks scabs until the bleed and she goes into "Molly's World".

With Mom and Dad at Molly's age
With my 2 best friends
And so, I must now figure out how to treat myself and give my daughter the coping skills she needs to deal with everyday life. As far back as I can remember I would get sore throats before school, I would get stomach aches to the point it would make me sick. I was bullied as a child. Being overweight and soft spoken, I was an easy target. I was picked on, called names, and even beat up at one point. I tried to fit in, but it wasn't worth it. Elementary school was tough, but I had some really good friends and I had an innate love of learning. Middle school had it's moments. But when I wasn't in the music room, or on the stage, or in the safety of a classroom - I was scared to death. Kids can be really mean. I still hear some of the names from those days, and I cringe - how do you forget years of torture? I think that's when my anxiety began for real. Any time I had to go into a new situation or try something new or if my parents were going away - I would turn to stone inside. I would freeze. Anything that came out of my mouth was wordy and didn't ever accurately express my feelings.

Then came high school. I'd love to say I was one of those kids who blossomed over the summer from 8th to 9th grade - but I wasn't. Still overweight, and forever awkward - I was really nervous for school. I swear my amazing friends - who are still extremely important parts of my life, really helped me build character during these years. I joined a peer leadership group, I fell in love with theater and music and I began to learn who I was inside was what really mattered. By senior year of high school, I was confident and I was pretty happy - at least that's what I remember. And then came college - and away went the shy person I once was. I figured out what I was made of being 4+ hours away from home. I made new friends, had some of the most amazing musical experiences and mentors a girl could wish for. That pesky anxiety feeling only reared her head during appropriate times - auditions, solo performances, juries - things that made me question myself and my confidence.

I'm extremely lucky to have had educators throughout my entire life who valued the whole child. I learned math, English, Social Studies, Science. I read Thoreau,  Shakespeare, and every author in between. I discussed politics and learned of cultures I would never see at Disney World! I sang music more beautiful then my ears could have hoped for. But in teaching me all these things, these teachers taught me that I was important. That my opinion was valued and that I had a lot to offer to the world. From the very beginning, I looked to my teachers as mentors to help guide me through life. My parents are amazing individuals who continue to inspire me to greatness. They have strong convictions and raised us with so much love an affection - but as Hillary Clinton said, It takes a Village. I think a lot of Molly's anxieties are held in check in school because of the incredible support system she has. I truly feel like we are a team, helping to shape her. And now that Kennedy has started school too - I see her admiration for her teacher and her desire to learn school subjects and about herself. Kudos to my teachers and to Molly and Kennedy's teachers. Alas, I digress - it's so hard when your brain travels a million miles a minute!

Tiny Baby Molly
So, my anxiety remained in check for many years. It really didn't start rearing it's ugly head until Molly was born. She was early, she was tiny, she made noise! She didn't come with an instruction manual and I was terrified of messing up. I got past that as new mothers do, but then she had her first seizures and life has never been the same for me. A dear friend shared with me that when you have kids like her son or my Molly it's like you are constantly suffering from Post-Traumatic Stress Disorder. You never know when the kids are going to seize, and you know when they get sick - they get really sick. You've seen friends bury their children, you watched in disbelief as toxic levels of medication are pumped into your child. You put them to bed every night, just hoping they will wake up tomorrow. That's when my anxiety and panic attacks hit, about 10:30pm - they kids have been asleep for a few hours, but maybe they bumped into the wall or Molly's playing the "hokey-pokey" in her bed and I'm on full alert. That fight or flight response gets my heart beating faster, my stomach turns to stone and my brain starts spinning. It takes every ounce of self control not to just sleep on their floor. So, instead, I sit on the couch and stare at the video monitor, taking deep breaths and telling myself - it will be ok, and if it's not ok - you'll deal with it then.

Last night's anxiety attack was rough. It started when we put the big 2 to bed and Kennedy said "My tummy hurts". Logically I knew she had not mentioned this at all before, that she had had cheese in her dinner, and that she's a refluxer from way back. Logic wasn't controlling my autonomic system and my heart started racing. My stomach then turned to stone and I had trouble choking down a piece of toast. Some quality couch time with the husband and spider solitaire on my phone succeeded in calming me down - it was a small attack and I actually started drifting off - so we went to bed. Then a BIG OLD panic attack hit. It was awful - but thankfully, I knew to come back to the couch, breathe and hop on facebook chat - and pray for someone who knew me and could talk me down. My dear friend was on, and through typing to her I was able to regulate my breathing and things were fine. I have a prescription for Ativan - I'm too chicken to use it., especially since I know Molly can't be on benzos because it makes her sleep apnea worse.

Just a smattering of our support system
So, year - anxiety is a real thing. It's debilitating and given all the things going on in our  world - it's amazing any of us can function, let alone leave the house. But, I find if I remind myself that each day is a gift, that you need to make happy memories and that worrying isn't going to fix things - I can usually get myself back on track. It also helps that I have some really amazing family and friends. I just feel they put me way too high on that pedestal sometimes. I'm human and I have an Achilles heal - I break too. I guess it's true, every person is fighting a battle that you know nothing about by looking at them. Smile at people, be kind to people, and find ways to make things better!