December 2013

Batman Saved More Than Bedtime

When we moved our family almost 3000 miles away from their cousins, I knew the separation would be hard.

My girls and my sister’s boys have grown up together since birth. They love Lilly for who she is and have never seen her as any different than that. After a horrific trip home this past summer, I soon realized flying across country with my autistic angel just might not be in the cards for awhile.

How was I going to keep the connection going?

My angel loves watching pictures and videos of the boys, but never asks for them or does more than a whine and then kiss on the phone. I just had to keep the faith to talk to both my daughters equally about their boys in California, show pictures, tell stories. One of the difficult aspects of autism is not knowing what their minds are absorbing. I know my Lilly is extremely bright, but it’s never easy or normal to not receive answers to questions we try to ask her.

A couple weeks ago, I was blessed with a sneak peek inside her precious mind. Every day around noon the doorbell rings, and I prompt Lilly to go answer it. It is always one of her amazing therapists arriving for her in-home ABA therapy. On this day, she pranced through the hallway, long legs and tip-toes as always, but cried when she opened the door. To my complete and utter amazement, she whined, “No Miss __.” “Dane! Dane!”

There it was. More than a year from moving away, she asked for her adoring cousin. I immediately jumped on FaceTime with my sister so Lilly could see his face, but more importantly so my nephew knew she was here, asking for him. I ran into the kitchen, grabbed his proud soccer picture from the fridge and put it in her therapy room. My gut told me to keep the momentum going. I felt this strong urge to hold onto this seemingly unimaginable moment forever.

batmanmaskShe has not asked for him since, but found a Batman mask given to her by the boys on our trip home. Lilly had regressed on that trip — humming constantly, little to no language, wandering — and the only thing that seemed to calm her was the mask. It acted as a comfort, an escape: heartbreaking and adorable wrapped in the same breath.

Of course my generous and loving nephews let her keep it.

Lately, and, honestly, most of her life, Lilly’s bedtime routine has been a nightmare to say the least. So last night, when she insisted on bringing the hard plastic mask to bed, I didn’t flinch. Anything to calm her and not cause aggression and a meltdown, I figured.

As if she was recalling a memory, my sweet girl slid the mask on, smiled one of her room-lighting, angelic grins, and peacefully closed her eyes. My heart sang: confident that this one simple toy is serving as a link, a physical connection to recall her memory of time spent with her boys.

Most people wear a mask to keep the world out, but Lilly wears hers to let the world in. I bet Batman never knew he had the ability to save a little girl like this.

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Emma and Olivia: My Angels

For my first blog post, I wanted to share why I’m here and why it’s so important to me. Here is my story.

I have two nineteen-year-old sisters with moderate to severe autism, Emma and Olivia. They are my absolute life and there is nothing in this world that I would not do for them, but let’s just say I’ve had my fair share of trials and tribulations for the last 20 years, give or take.

When I was younger, it was a lot easier for me to shrug off the idea of autism and just categorize it as something my sisters had and I had to deal with it. I never thought about it often or made any kind of reference to my friends because it was so normal to me that it didn’t seem like I needed to explain. My sisters’ behavior were such a natural flow in my life that I almost believed that everyone’s siblings were like mine.

As I grew older, I started to realize the enormity of the difference between my life and my friends’ lives. It became evident to me that I struggle with something everyday that no one else I knew did. As this came to light, I started to wonder how others perceived my difference and if it was good or bad. I struggled with this for some time, trying to figure out how to deal with coming to this realization. I would find people staring at Emma and Olivia to be horrifying and all I wanted to do was to go over and tell them how ignorant and blind to reality they were.

Comments from older generations while out in public would sometimes bring me to tears, and I needed comfort from my parents who were equally as shaken. This happened once when my family and I were out to dinner at a fancy hotel. An older gentleman went up to my sister Emma and said “Young lady! Why are you being so loud? You need to quiet down in here, that is inappropriate.”

I broke down. My dad got angry with him and let him know he upset my family, and he eventually, reluctantly, apologized. I didn’t understand how there were so many people in this world that had no idea what was going on with Emma and Olivia, and how they could be so offensive and arrogant.

It hasn’t been until recent years that I embrace my sister’s differences and enjoy sharing them with the world. If I find someone staring or making a comment, and I’m in close enough proximity, I’ll try my best to explain my situation in a polite manner. To this day, in some situations, I still struggle with the polite aspect. But since autism is so widely known today, it has become less common for people to make comments, yet the staring is still something that is extremely prevalent. I’ve come to terms with the idea that in most cases it’s curiosity, not condescension.

As this came to light for me, I was in high school and it was time to think about college. Everyone was extremely concerned with what they wanted to do with their lives. It seemed to be something that young people my age had much difficulty with, and I didn’t quite understand. I knew exactly what I wanted to do. There was no doubt in my mind that a career with autism and/or other mental disorders was my calling. I am interning with The Autism Research Foundation to give myself a well-rounded understanding of autism outside of my family, and to share my personal experiences and resources with the autism community I have grown up a part of.

I consider myself so lucky that my sisters were brought into my life because I’m one of the only people I know my age that has a clear motive for schooling and life itself. Emma and Olivia have brought me an incredible amount of purpose that I might not have had otherwise. They better me and I wouldn’t be who I am today without them. They’ve touched not only mine but so many others lives that I can’t help but wonder if that is their purpose. I think of them always, every aspect of my days remind me of them, and I couldn’t be happier.

While I spend so much time and energy dedicated to being their ‘guardian’ angel, they’ve equipped me with life skills, emotions, and first-hand experience that would earn THEM the title of ‘guardian angels’ all on their own.

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Holidays? No Problem!

Holidays are stressful for everyone. Forced family fun (FFF as my mom likes to call it), gift giving/rejecting, and massive coma-inducing dinners… it’s all upon us and guess what? We have a sibling with autism.

If you’re reading this and you don’t have a sibling with autism, here is a run down of some of the events that can add extra sparkle to the holiday cheer:

  • Meltdowns! Big ones. It can be triggered by a multitude of things, usually involving screaming, fighting, kicking, rolling on the floor, etc.…
  • Persistence to blare the Barney VHS tapes that NEEDED to come to Grandma’s or leaving the house just wasn’t an option.
  • Act III: The Escape Artist. Find an open door, maybe even a window, and they’re OUT.
  • Bags of food to cook specifically for our wonderful siblings whose diets don’t allow for turkey with gravy or pineapple ham. It’s only because they’re too trendy though – it’s a new diet, kind of hard to explain.
  • Speaking of hard to explain, there are always the bold and beautiful family members. One little quirky thing out of our sib’s mouth and it’s on to the final act: ‘twas the night before judgment day.

If you have a sibling with autism, at least one of those scenarios should sound familiar. Of course every child is different in his or her disorder, but the characteristics are known to be the somewhat same amount of challenging. I’ve come to realize that some, even all of these things just aren’t avoidable. I hope to provide some insight on softening the blow, even if only a little bit.

First of all, don’t panic. The less meltdowns there are, the better. There are several ways to combat any of these situations, but the biggest savior is distractions! This works best for things like meltdowns, persistent blaring, and escaping. For example, iPads and other types of technology that can play videos or music with volume control or headphones have been big helps in my family’s life. If wherever you’re going has a TV, DVD player, or computer, even better. But it’s a good idea to have a back up plan like an iPod, portable DVD player, or even a laptop.

Another way to keep behavior at bay is a solid reward system. If your sib knows before hand that they’ll be rewarded for good behavior, the likelihood of a tantrum happening (or at least lasting the minimum amount of time it goes on) is increased. Rewards depend on what your sib likes to do and are different for everyone. My sisters love to go to the mall, so my parents often tell them that we’ll take a trip to the mall if they behave. The most important part of a rewards system is to be able to follow through. When your sib knows that your word is good, their behavior is much more likely to be desirable.

Needing to have your own food options is completely unavoidable in most situations. If your sib is on a specific diet, or is just plain picky, then there is nothing wrong with bringing their own options. Pack a cooler bag with the foods they love and ask if it is OK to use the kitchen at your destination. If it’s a problem, prepare the food before hand. If you’re going to a restaurant, find out in advance if they have options your sib will like. If they don’t, make sure they eat before hand.

Overly forward family members, friends, and even strangers are an unfortunate part of life. The likelihood of someone not approving of your sibs unusual behavior can be pretty high, including their genuine disregard for your feelings. When someone makes a snide comment just know that its not the end of the world – they don’t and probably never will understand what you’re going through. Some may not agree with it, but I’ve had the best luck ignoring it and acting like it never happened. Sometimes all they want is the attention. If it’s an ongoing occurrence, ask to speak to them privately and ask them to be more respectful of your sibling because what they say is hurtful to you. If this doesn’t help, get a parent involved. What they’re doing is inappropriate and should be stopped.

My number one piece of advice when trying to survive a holiday with your sib is not to make a big deal out of it. Go about it like a normal day at home, with a few little tweaks. Family and friends should be understanding, loving, and accepting of whatever your sib brings to the party because guaranteed, they’ll be the life of it!

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The Importance of Donations

Diana and her sistersAs an older sister to two incredible, beautiful, amazing girls with autism, I am extremely grateful for the amount of support from donors that help keep The Autism Research Foundation running. Since I was able to speak and to think on my own, I’ve known that my most important role in life would be to be my sisters’ voice.

They’re unable to thank you and to let you know the level of gratitude my family and I have for any and all donations that bring life to an organization that devotes their time and energy to bettering the lives of those on the autism spectrum, but I am.

I’m able to say that research on causes and cures continues to grow because of funding from donations of all amounts.

I’m able to say that children with autism are getting involved in sports and other typical activities because of the generosity of strangers.

I’m able to say that increased knowledge throughout the world about autism has become available thanks to the love that comes from those who care about talking about it.

I’m able to say that families who thought they could never support their child with autism have new hopes and dreams created by the efforts made by a few good people.

I’m able to say that new therapies and interventions have been discovered that have brought comfort to those living with autism because of the money raised in support of brain-based research by organizations like The Autism Research Foundation.

What I can’t put into words is the amount of love that families like mine have for donors. They are what keep our hopes alive, our dreams for my sisters big, and our lives in motion.

There is nothing that I’m able to say that could describe the feeling I get when thinking about there someday being a cure-all because people that I don’t know care about my sisters enough to give generously to research efforts.

From the bottom of my heart, thank you.

To make more contributions in support of families like mine, donate here.

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Why We Should Share Awkward Moments

My cousin has autism. When people we know learn about his diagnosis, their initial reactions are “oh, I’m so sorry to hear that!” While that’s not necessarily a bad thing, it still just doesn’t feel like a good thing. First and foremost, Mikey is a person: who has hobbies, interests, intellect and feelings, even though you can’t always distinguish what those feelings are in the moment he’s feeling them due to his autism.

Because of that emotion-to-action disconnect, Mikey’s autism has landed us in some many awkward social situations. In the moment, these awkward events make us feel embarrassed: as if we have to explain ourselves, Mikey, and his autism constantly. But, the truth is, we don’t owe anyone that explanation; we owe ourselves the permission to look back on these events with a smile — maybe even a good laugh — and appreciate the life lessons that awkward moment taught all people involved.

We hope this blog will serve as a forum for you to discuss you and your family’s au-kward moments with others who can empathize. It’s meant to be light, fun, and fulfilling.

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For more ways to navigate awkward social moments, read here.

For more funny stories about au-kward moments, read on!

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It Can Be the Most Wonderful Time of the Year

The holiday season is upon us in full swing. Family calendars become full with school functions, family gatherings and church services. All are meant to spread peace and joy further, yet the opposite occurs in our family. My 4-and-a-half year old daughter — my angel, Lilly — has autism. The cattle herd-like shuffling in winter coats from unfamiliar place-to-place proved a nightmare for her. I strategically planned my holiday outfits around needing the ability to lunge through the air to stop her from opening other children’s presents at homes and the decorative display presents in shops.

After the 3rd year of this madness, performing our family’s rapid “fire drill” exit just 10 minutes after arriving at a family Christmas party, we called it quits. Through tears and sobs by the entire SUV, we declared we were done: going “off the grid” as my husband declared on Facebook to be exact.

We soon realized that as much as we needed a time out to stop the madness of this horrific nightmare, it wasn’t the right solution either.

Lilly enjoying the first official snow of our New England winter.Now, in our 4th holiday season, we have a game plan that suits our family’s needs. Just like the beautiful snowflakes that fall — unique in their nature and appearance — so are our angels with autism. Listening to her needs, verbal or not, makes for a better holiday season.

I offer to host at my house, or accept an offer to a house or place I know my daughter feels comfortable in. We say “yes” to morning and daytime activities, and a big fat “NO, THANK YOU!” to nighttime parties and functions, for now. We have shifted our expectations and feel at peace with them. If my husband or younger daughter really want to attend a night function, we split up, and one of us stays home with our Lilly.

For me, the joy of the season looks like this: Watching my daughter hang her own Dora ornament on her 2-foot-high tree. It’s letting her use our Christmas cookie cutters to mold Play-Doh instead of help her younger sister and I bake Christmas cookies. And it’s about vetoing the Elf on the Shelf for another year because she won’t understand it yet, and that is okay with me.

— Michelle Fulton Steiner

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Brain Tissue Freezer Needs Replacement

As we have begun planning for the 2014-2015 academic research year, The Autism Research Foundation has identified multiple material needs to advance its neurobiology work.

Most importantly, Dr. Margaret Bauman’s autism lab at the Boston University School of Medicine will require the purchase of a new brain tissue freezer to replace an outdated model in January 2014.

brainfreezer

Her existing tissue freezer is at-risk for malfunctioning and has already suffered a substantial power shortage due to old age. Luckily, our staff was prepared to remedy this emergency this time and all of our tissue is safe, secure and uncompromised, but we do not want to rely on unreliable equipment in the future. There is no guarantee that the power shortage will not happen again, so we have rented a more reliable tissue freezer to use in the meantime.

What’s so risky about a power shortage with the brain tissue freezer?

Brain tissue is the most valuable component of our research. It is something we cannot buy or sell; individuals with and without autism choose to donate their brain tissue to science by remembering The Autism Research Foundation in their wills and after-life care plans.

The brain tissue freezers are set at a strict -80 degree Celsius temperature, which keeps the valuable tissue in optimal working condition when we are not physically investigating the tissue at our lab benches.

When a power shortage occurs, that important -80 degree Celsius temperature is not maintained and we risk thawing the brain tissue. If this happens, the brain tissue is damaged and cannot be used for research anymore.

How can I help?

This new replacement freezer will cost The Autism Research Foundation $20,000.00. When you donate toward our new brain tissue freezer, all funds go directly toward the purchase of the new, vital equipment. Every little bit helps!

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Please share this page with your family and friends, so that they can help us spread the word, too.

Looking to contribute in other ways? More needs can be found on our Wish List.

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