For Siblings

A Friendly’s Song

February 5, 2014

I feel like I have au-kward moments every other day, rather than every week. This makes sense, though, considering I have two twin sisters with autism that are very vocal, charismatic, and outgoing.

Luckily, this week was extra special. I went home from college for the weekend and went to Friendly’s with my mother, father, and sisters. We went at prime time: 12 o’clock noon when the restaurant was filled with children. Since most looked to be around age 12 and under, I assumed most of those children didn’t understand autism up-close — let alone from afar — so I was already preparing myself for their curious stares when one of my sisters was guaranteed to give them something to talk about! And she did: Emma gave them a fun-filled example!

My sister Emma has been on a YouTube-kick watching this particular Sesame Street clip with lots of high-pitched singing. Emma is the queen of repetition, and decided not only to sing just as the characters do, but extremely exaggerated. It was like Sesame Street Live!’s Broadway show without costumes. Needless to say, we all got the deer-in-the-headlights stares from the kids and perfectly practiced eye rolls that we were waiting for from the parents. But, oh, how my family laughed at her on-point spontaneity! For a moment, I wished I had the courage to entertain via restaurant cabaret, too.

And you’re welcome, parents. Your children got a free show with lunch. 🙂

— Diana Alessandrini

Life Lessons from Emma and Olivia

January 30, 2014

I was sitting in my English class senior year of high school wondering what I could possibly write about. College essay? What does that even mean? What do they want me to talk about, myself? Everyone told me that I had it easy because I can write about my sisters because they have autism. I figured they were right, leading me to leaving my essay to the last minute (as per usual), thinking I was going to be able to breeze right through it because of course, I had so much to write about.

As I sat down that night to write the easiest essay of my life, I suddenly began to panic. I had absolutely nothing! How could it be that I had nothing to write about? When I say nothing, I mean less than what I thought was nothing when I went to write about Lord of the Flies. And that was a bad essay.

I sat there for what felt like hours trying to figure out what the heck was going on. I played around with many ideas; maybe I just didn’t want to go to college or maybe it was the fact that my teacher was so annoying she made me want to hide under my bed every morning. I even asked my parents why I couldn’t figure this out and they told me that I just needed to think about it, that I’ve learned so much from my sisters and that there is going to be plenty to write about. It would come to me. I figured this was true, and took a couple days to think on it and took the hit on the late deductions.

Well those days went by fast and I was still thinking. I had come up with a few ideas but they all felt forced, as if I had only read the Spark Notes on the book of my own life. I went on to write my essay about what I thought was what I had learned from Emma and Olivia. It hasn’t been until recent years that I realized that I wasn’t trying to avoid college or my teacher, having nothing to write about was absolutely the case. I hadn’t learned anything from Emma and Olivia, and I never have.

I can’t remember my life without my sisters since I was only two when they were born. Everything I am comes from them. All aspects of my life surround them. I’ve never directly learned anything because there isn’t anything I do that isn’t influenced by my sisters. I eat healthy because I want to be able to keep them healthy and be around for them into late life. I major in psychology because I want my life to have its purpose in finding ways to better theirs and many others lives. I stayed forty minutes from home to go to school because I can’t be away from them for too long without feeling like I’m missing something.

I know this isn’t the case for everyone. Some people haven’t always had his or her sibling around since birth, and there are many amazing things that come with that. Maybe I would have had some serious life lesson business to talk about in my college essay if that was my case. But for me, it’s not like that. For me, I almost feel like I have a sixth sense. Like I was born with something that most others aren’t. It’s not something I can describe, but if you have a similar situation, you know exactly what I mean.

Needless to say, my college essay wasn’t exactly as deep and thoughtful as my previous words. In high school, my brain just didn’t work that way. I didn’t know then that what I felt was my lack of motivation was the pure fact that I haven’t learned from my sisters, I’ve lived through them.

Fundraising That Helps Your Autism Programs, Too!

January 28, 2014

Beads for a Cause™ designs quality, cause-conscious jewelry that represent charities that are most meaningful to you. Beads like this “I See You” design symbolize a person’s commitment to autism awareness, research, education and inclusion, while a percentage of sales goes directly toward those efforts by The Autism Research Foundation. Use this bead to fundraise for your autism programming, too!

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Moving Forward by Looking Back

January 27, 2014

As our inclusion program Athletes 4 Autism gears up for an exciting 2014, I decided to take a look back at one of the first A4A events that I myself experienced firsthand. I will never forget the feeling of overwhelming pride I had not only for my school, but also for this organization. As you will read, the power of a smile really does go a long way.

– Kelly

Looking Back: How the Power of a Smile Transformed “Spectators” to “Athletes”

On Sunday, April 15, 2012, the basketball court in Boston University’s Case Athletic Center buzzed with excitement, as smiles danced across the faces of student-athletes and children alike. Athletes 4 Autism (A4A), the flagship inclusion program of TARF, had teamed up with Boston University to participate in a school-wide community service initiative. This Global Day of service event was designed with multiple goals in mind: to introduce families to the organization and to give Boston University athletes a chance to participate in a fun-filled charitable event. At this family-friendly day, A4A was out to prove that “life isn’t a spectator sport.”

The afternoon featured skill stations run by volunteers and athletes from various Terrier teams. Families and volunteers witnessed what some people would consider a “disabled” child succeed at what a “neurotypical” child can struggle with on a daily basis: conquering uncomfortable social situations. With the goal of bringing everyone together in friendship through sport, areas including “soccer shots” and “ fastest pitch” allowed participants to meet potential “mentors” while learning about what sports were offered through the program. Participants could play at a challenge course with members of the women’s lacrosse team, shoot some hoops with the basketball team, or even score a few goals on the nationally ranked men’s ice hockey team.

Perhaps the most rewarding part of the afternoon was witnessing student-athletes connect with the children and their families. It was easy to find volunteers striving to make sure everyone felt comfortable at the event. I watched as Sydney Godett, a member of the women’s lacrosse team, reached out to an uneasy little boy named John who was desperately clinging to his father. Unlike the rest of the happy attendees, John was not smiling. In a matter of minutes, Sydney made him feel comfortable in this strange environment by offering a warm smile and a helping hand.

Soon enough, they were facing off in the challenge course, not a shred of anxiety apparent on John’s exuberant face. Suddenly John beat Sydney to the finish line, a moment so pure and so full of joy that it brought a smile to everyone watching the race. “We were told not to be alarmed or offended if the children didn’t respond right away,” said Godett. Luckily for both Sydney and John, a lack of connection did not exist; in fact, they seemed to be quite a team.

Because A4A is open to children both on and off the autistic spectrum, there was a strong mix of families with children both on and off the spectrum, showing that children of every capability can successfully coexist when it comes to athletics. Cathy Mealey, the mother of both a child with autism (Liam) and a child without autism (Grace), was thrilled when she learned about A4A’s open event. “We make an effort to take Liam into the community as much as possible, and we try to find ways to get both him and Grace involved together.” Mealey believes that the key to Liam’s success is “all about finding the right partnerships and the right niche.” She notes that her son “has always been drawn to sports,” so this event was a perfect match for Liam.

As A4A’s Global Day of Service event came to a close, John stood at half court, asking members of the Men’s Ice Hockey team to play some basketball with him. In his eyes, these boys were not the star athletes of the Boston University community. He simply saw Wade Megan, Sean Escobedo, and Ryan Ruikka as big friends for him to play with. In one afternoon, John transformed from a “spectator” to an “athlete.” Little did he know, he was not the only one smiling now.

When People Turn into Monsters

January 23, 2014

Since I first figured out that my sisters were different, I knew that there would be times when other, typical kids wouldn’t understand. I feel extremely lucky that my parents explained to me on multiple occasions how to deal with the hurt that comes from the teasing and bullying of Emma and Olivia from their peers, even strangers.

Even though I had this ingrained in my head, it still came as a shock to me when grown adults had the audacity to say something mean, not just rude, about or to my sisters. It would hurt to the point where I would cry to my parents because I didn’t say something, and felt like I wasn’t doing the right thing for my sisters. There was one particular situation that will always stick with me for the rest of my life.

When I was in high school, I drove my neighbor Hanna* to school when I got my license. She was much younger than me, so she enjoyed being able to talk about all sorts of things before we got to school. She was just out of middle school and loved my sisters. She had been in the same middle school with them for a few years after I was. One day (I don’t remember how), we got on the topic of how I felt when Emma and Olivia were teased.

She started telling me about one day when she was in Spanish class with Ms. Torres*. Ms. Torres was one of the meanest teachers I had ever had in my entire life. She not only told people in my class personal information about my life, but also made me cry when I told her about it in privacy.

Hanna began telling me that on this day, my sisters were being wheeled in their chairs down the hallway by their aids, and were repeating something they had heard in a movie or on YouTube. Whatever the girls were repeating, it called for them to be loud. Not ones to be shy, they were yelling whatever it was that they were repeating that day. Hanna was in Ms. Torres’ class down the hall, and when Ms. Torres heard the yells, she jumped, rolled her eyes, and laughed sarcastically with the kids in the class. Hanna also mentioned that she said something along the lines of “Well, that’s annoying.”

Now, maybe some would think, “Okay, she was just trying to avoid the situation or lighten the mood,” but I knew this teacher too well to kid myself. She truly thought that it was annoying, and was not about to explain to the class what the noise was or who it was coming from, because that wasn’t who she was. She was a mean lady, and I knew she didn’t “approve” of my sisters.

Later on that day, I told my mom the story. My mom knew about the times in middle school that this teacher caused me grief, and had to speak to her on multiple occasions. She didn’t have much of a reaction – she kind of just shook it off and that was that. I was so mad! I asked her why she didn’t go down to the school and say something, or even call or email this evil lady! What kind of example is that to all of the other kids in the class?

She told me it didn’t hurt her, and people like Ms. Torres would never hurt her, because she knew that these people probably have just has much hurt in their lives as I was feeling at that moment. How were we supposed to know if she was going through a rough time in her life? How was I to know that she didn’t feel this hurt on a daily basis?

My mom did end up saying something to the guidance counselors and the principal, but didn’t make it her job to go and get angry with Ms. Torres herself. To my mom, she wasn’t worth her time. Administration handled it.

Although not at that moment, I came to realize my mom’s point. Even though I’d still like to go tell off Ms. Torres, I see now that people like her can’t hurt me. I have so much happiness in my life because of Emma and Olivia that no one’s comments or opinions can take any of it away.

* denotes name change

Packing Craziness: Not So Happily Ever After

January 16, 2014

Getting ready to travel with my sisters is like preparing to go on a pilgrimage across Europe for five months. I mean how much stuff can two nineteen-year-old-girls possibly need? A lot is the answer to that question!

The main trip my family and I take is to Disney World every few years. My sisters have always loved it, and surprisingly it’s a place we’ve all grown to love and enjoy as a family. When it’s time to leave for the airport, everyone is excited and ready to go right when the car arrives to drive us to the airport.

HA-HA! No, not so. My mom INSISTS on bringing our whole entire house on trips with us. It’s like an addiction that she can’t kick. No matter how many times my dad and I plead with her not to bring three full suitcases each for Emma and Olivia, the routine stays the same. To give you a better idea, let’s break it down by item:

Clothes: Obviously a necessity for anyone. For my sisters, this means 20 outfits for a seven-day trip, equipped with yoga pants, tank top, over shirt, zip-up jacket, and socks. Over-the-top? We haven’t even gotten to the best of it yet.
Shoes: All of the shoes my sisters own come with us wherever we go. Need I say more?
Diapers: Since my sisters aren’t fully potty trained, they wear adult diapers. In a pack, I’d say there are about 20 diapers. Mind you, they usually go in the bathroom, but once in a while they’ll have an accident and need to be changed. My mom prepares fully, and brings about 10 packs of diapers with us. She’ll check about 15, and bring about five on the plane.
Food: Emma and Olivia are the pickiest eaters of all time. Emma only eats pizza and a few snack items, and Olivia eats a few more things and is able to eat at restaurants, but also likes her snacks. So what do we bring? Frozen pizza and snacks. I would say five bags of chips, Smartfood Popcorn, fruit roll ups, etc. Each. Plus a few dozen boxes of frozen pizza.

Now, my dad has developed a new system where he ships some of this stuff over in advance, which has helped out very much. We arrive, and all the food and some of the other things are already there and put in the room. What hasn’t changed and probably never will, is the mad rush right before we get in the car to drive to the airport. Clothes are being shoved in suitcases; pizzas are being thrown across the room into freezer bags; sisters are being antsy and running out the door ahead of everyone else – it’s just a mad house.

When we finally get to where we’re going, and everything is settled and unpacked, we always appreciate my mom’s over-the-top packing strategies. No matter how frustrated and crazy we feel while she’s doing it, she knows the girls and knows what they need. Their needs are so much more than ours, and sometimes we forget how much extra attention and planning that needs to go into account when traveling with them. It’s a part of our lives that mom definitely knows best. Sometimes it’s just a matter of letting her do her thing, sitting back and just putting it all in the car.

How “Typical” Siblings Can Support Each Other

January 9, 2014

I am a sister to two amazing and wonderful twin sisters, both of whom have autism. I am their only other sibling, and our extended family is scattered. Looking back on our life together thus far, I’ve realized that I dealt with a lot of tough, emotionally draining times without anyone who fully understood what I was going through as support. My parents of course were an amazing support system on their own, but there was no one that was in my shoes that I could reach out to for advice.

I want you to know, I NEED you to know, that I was so wrong. You are NOT, and never will be, alone. There are so many other typical “sibs” out there that are feeling the way I did and it pains me because all I want to do is be able to help and tell them that I AM HERE! We all are here. I hope this post gets to as many of you as possible.

I’ve come up with some ways we can all support one another and feel a little less lost:

Get involved. This is the most important thing you can do. Everyone else won’t know you’re there unless you make the effort to join us in conversations. Resources like The Autism Research Foundation’s sibling blog is a GREAT way to find support and familiarity through posts, comments, and even events. The number one way to support one another is by being there to listen, being there to offer advice to a fellow sib during a tough time, and being there for life.
Speak up. We want to hear your stories! We may even NEED to hear your stories. It feels so good to know that you are not alone, even if it means writing the most embarrassing au-kward story on this site. All us other typical sibs appreciate your courage in sharing. It gives us the comfort of knowing that that curdling scream our sib let out at the movies last night happens to the best of us.
Create awareness. I think I can say with a pretty good amount of certainty that all of us would like autism to be a little better understood. A little fewer stares, a little less tension when navigating au-kward situations would bring the anxiety levels down a notch. Fundraise with your friends, organize an autism-related event at your school, make some informational boards at local hangouts, get involved with Best Buddies – there are endless possibilities.
Ask your friends for help. This can be daunting to do all on your own. Friends are great back up for events, fundraisers, and creating awareness. Ask them to listen if you need to have a vent session in the bathroom at Chili’s. If they can listen to your love life problems, they can listen to your sib life problems too.
Be a role model. If you see something, say something. Never let bullying go unnoticed. I speak for the entire typical sib family when I say a world without bullying of our au-tastic sibs is possible when we are there to create it. Bullying is unacceptable and sticking up for what you believe in can really make a positive impact on those around you.
Join a support group. (insert link to group sites here?). There is nothing wrong with admitting that having a sibling with autism can be mind-blowingly stressful, and sometimes we need some serious support. Being able to talk is key, while also lending an ear to those who need someone to listen to them. Support groups can be found anywhere locally with a quick Google search. Ask your doctor or even your sibling’s doctor for advice on how to find them, because he or she may have a referral.

What you can do right now is comment on this post and tell me ways that you think we can support each other. Ask questions, give advice, and offer an ear – let us know. Typical sibs, unite!

How to Navigate Au-kward Social Moments

January 8, 2014

Au-kward situations come in all shapes and sizes. They can be big or small, loud or silent, seen or unseen. Sometimes there is no predicting an au-kward moment making them more challenging than most. The most important thing to keep in mind is that these moments are unavoidable. Even typical awkward moments are impossible to avoid! What matters is your approach when dealing with combating the situation and the mindset you keep.

Consider this scenario: my sister Emma is a flinger. She flings anything she can get her hands on – the problem is we never know WHEN it’s going to happen. One day when we were much younger, we went out to lunch at a restaurant that had outdoor seating. Emma must have felt that this gave her some kind of permission to fling things, because right when she got her fries, she took one, wound up, and flung it as hard as she could over her head, backwards. All of us paused in shock not knowing where the fry landed, waiting to see the outcome. Turns out it landed smack in the middle of the salad belonging to the man sitting behind us. He turned around and we braced ourselves for the looks of disapproval and frustrated comments, but he BURST out laughing! He couldn’t contain himself –he thought it was the funniest thing that had happened to him all summer. We exchanged some laughs and short explanations and went on with our lunch.

Moral of the story: don’t sweat it. Au-kward situations happen to the best of us. For times that you need a little navigating, here are some of my tips:

Laugh it off. Sometimes if you’re the one trying to hide whatever is happening, people will automatically feel tense and irritated. If you laugh and keep it light, most likely it will roll off their shoulders.
Keep distractions handy. For those times when the au-kward situation seems never ending, YouTube on an iPad is your BEST FRIEND.
Have a short and sweet “explanation” thought out in your head. My go-to line for my sisters is usually something like, “Hi guys, sorry to interrupt, she has autism and is easily overwhelmed. This is just her way of coping.” You don’t need to get into detail, just enough to define the situation.
If someone is really irritated by what’s happening, start with your “explanation”. If that’s not enough and they’re still on your case, don’t go into attack mode (although it can VERY be tempting at times). It’s ok to come to terms with the fact that some on-lookers just won’t accept au-kward situations for what they are. At that point, that’s their problem. I like to smile, nod, and move on.

Au-kward moments make life interesting. Whoever can’t handle it must just be boring.

If you have an au-kward moment, learn how to share your personal story with us.

Batman Saved More Than Bedtime

December 30, 2013

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.

She 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.

Emma and Olivia: My Angels

December 30, 2013

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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