Raise Autism Awareness By Being a Friend

Life would be a lonely place without friendships.  Having a best friend to call and barely being able to contain your excitement as you tell them about the new job offer you got, meeting with them for coffee to tell them about a troubling situation you’re going through,  playing a round of golf with them, chatting with them in the hallway at school between classes, going to a movie, and so many other things we share with our friends on a daily basis, are all things that most of us get to enjoy and even take for granted.

Surrounding yourself with people who are positive, encouraging and uplifting can be the driving force behind whether you have a good day or bad day.  A snide remark, an unwelcome piece of advice, jumping to conclusions about how a parent isn’t raising their child the “right” way, a smile from a friend, a compliment from a stranger, or a word of encouragement can all change our mood.  Certainly we are all in charge of our actions, emotions and how we live our lives, but having a positive support system around you makes all the difference in the world!  This could not be more true for autistic individuals!

Who hasn’t witnessed the dramatic turn around at a sporting event where the underdog makes a comeback as their fans are yelling encouraging words, the angry co-worker who is able to regroup after a worried colleague inquires about what is troubling them, or an outcast at school that is befriended by a classmate?  There are so many different scenarios in life where opening yourself up, letting your guard down and being kind to someone else can lead to events that change your life forever or introduce you to a lifelong friend.

Bri and other individuals on the autism spectrum don’t have the same luxury.  Social skills are an area that is highly impacted by autism.  Picking up on social cues such as personal space, disinterest or boredom after talking about a topic of interest for lengthy periods of time and body language are things that need to be taught.  Lack of eye contact, interrupting a conversation, talking loudly, and many other faus paxs are something that don’t even occur to an autistic individual as being rude or unwelcome.  These are things that the general population takes for granted and they have a hard time understanding or relating to someone that doesn’t fit into the social “norm.”

Autism Awareness is an important time in the month of April.  There are walks, fundraisers, and many other events to draw attention to autism.  People are always trying to think of ideas to raise autism awareness in their communities.  There are so many wonderful events across the nation but we need to raise awareness every day and not just during the month of April.  I’ve been thinking a lot lately about ways to raise awareness.  While I realize the incredible importance of raising money for research, partaking in autism walks in your communities as well as many other things, one of the best ways to raise autism awareness, in my opinion, is through friendship.  There is nothing in this world like having a friend!  I treasure my friendships immensely!

One of the things that breaks my heart in this journey, is watching Bri grow up without making friendships that come so easily to peers his age.  I watch as my friends’ children go to sleepovers, play sports, laugh hysterically as they’re telling their friend the latest fart joke – Yes, I miss those disgusting moments too!  Bri is trapped in his body and controlled by sensory issues, not being able to talk and express his needs and ideas, a constant need to control his environment by placing things in a certain area or position, trouble with fine motor skills, unease around a large crowd or new places, and so many other things that make his daily life a challenge.  He doesn’t know how to play or interact with peers.  He tries to control where they stand, he pulls them around and tries to get them to get something he wants, he plays alongside them and not with them, and he can’t communicate with them when they try and talk to him.

This has led to a very lonely and isolating life.  Sure I have extremely close friends that either have a child on the spectrum as well, or have not let our friendship of many years change due to my raising an autistic child.  Other friends that I thought would be there forever have dropped out of my life.  Maintaining friendships is hard work!  I find myself struggling all the time to balance everything in life and still reach out to friends and keep in touch with their lives.  The truth though is that so many friends are so busy (I fall into this category most of the time), are worried about their own problems and making ends meet, or just don’t know what to say to you.  I’m not judging because I know how hectic life gets and months or years go by sometimes in between talking to some of my friends, but I think we all need to open ourselves up to putting ourselves in uncomfortable situations and be a role model to our children.

I didn’t always feel this way.  I’ve spent the past 6 years trying to get answers for my son.  I’ve taken him to so many specialists, have scheduled countless speech, OT, PT and ABA sessions that it’s amazing I’ve found time to do some of the things I’ve done.  My life has been consumed by finding everything I can about his partial duplication (16p11.2), processing his autism diagnosis that didn’t come until he was 3 years old – 3 days before Christmas, advocating for him, attending IEP meetings, scheduling a number of surgeries, scheduling eye appointments, hearing tests, waiting for so many test results, sleep studies, putting him through several EEGs regarding absence seizures that he’s had and trying several medications until we found one that controlled his seizures, and I could go on and on.  The point, is that I’ve never really made the time to focus on my loss of friendships or how that’s impacted my life and Bri’s life.

I’ve been waking up every day and making sure that I keep my head above water.  I’ve been going through the motions of caring for my family and marking things off my “to do” list.  The fact is that when you’re raising an autistic child, there is never enough time to do everything you want to do.  There are so many things to work on – social skills, communication, appropriate behavior, etc, that it is simply impossible to do everything.  You have to focus on one thing at a time and do the best you can.  I’ve learned that I need to stop berating myself for the things I haven’t done and focus on the things I have done to make Bri’s life easier for him.

There is one family that has made such an incredible impact on our lives and made me realize the importance of friendship in not only my life, but Bri’s life as well.

Meet The BenjaminsBenjamins!

I can’t even begin to tell you the way this family has changed our lives.  They have always been so welcoming and accepting of Bri.  They have talked “to him” from the very moment they met him.  Even though he didn’t always respond, that never stopped them from taking his feelings into consideration and including him every time they came over.  They went out of their way to try and engage him in conversation and do the things that he liked to do.  They learned what his sounds were for the different types of train cars and spent countless hours drawing trains for Bri.Fruchtnicht and Benjamin kids

Tammy, from the very beginning, always invited both of my children to her house.  We rarely get invitations for both children, so that really meant a lot to me.  I know much of that is my fault because we used to get invited to do lots of things and I would usually turn down the invitations.  I certainly didn’t turn down the invitations because I didn’t want to go, I turned them down because outings with an autistic child aren’t easy.  There are so many factors to consider: is water nearby, is there a fence, are there hiding places or enclosures where I can’t keep a watchful eye on my child, is there traffic near the event, is the activity too challenging for my child, will he destroy someone’s property, will I be able to get to him quickly enough if he runs off, etc.  You can’t just go somewhere without planning, in detail, different scenarios and your reactions to them.  You have to analyze the possible challenges or danger in every situation.  So after turning down so many things, people stopped asking us to do things which is totally understandable.Baseball game

Tammy pushed me out of my comfort zone, and as I spent more time with their family, I opened myself up to her invitations.  I would let Bri and Molly go over to their house even though I was worried about Bri destroying their things.  I feared those visits might ruin our friendship but I couldn’t have been more wrong!!  Bri had an incredible time and I was able to get a break.  Bri was able to experience a new environment without me watching over his shoulder and stopping him from doing a number of things.  I’ll never be able to thank Dave and Tammy enough for opening their home and watching my children.  They made me realize how much I’m making Bri miss out on because of my fear and anxiety.  Of course, accidents happen and you can never totally Bri-proof your home or environment, but that never stopped the Benjamins.

PaytonI have a special place in my heart for one particular Benjamin.  Payton, the oldest child, is one of the most patient, caring, accepting and loving children I’ve ever met!  She became Bri’s best friend and changed his life forever.  Payton Drawing Trains for BriShe studied Bri and found out what he liked and then embraced those things.  She realized that trains are one of Bri’s favorite things and she drew them for him.  She jumped on the trampoline with him, rubbed his feet, sang to him, read to him and most of all was constantly showing him how much she loved him.  Payton Rubbing Bri's FeetIn his own way, Bri showed Payton how much he loved her too.

Sadly, a part of being in the military is saying goodbye to friends as they move to their next duty station.  The Benjamins moved away a little over a month ago and we miss them every single day.  I’ve put up pictures around the house and Bri will often ask me to take them off the wall so he can look at them.  I can see how much she touched his life and that he misses her.  Thankfully, even though we aren’t neighbors anymore, we’ll be lifelong friends.

Parents, you need to teach your children at an early age to be accepting of others no matter their abilities or disabilities.  We all want to be accepted, loved and be a value to society.  Not teaching acceptance to your children at a young age can lead to bullying and prejudice.  You could also keep your children from making the most valuable and meaningful relationships of their life.  It is  imperative that you are a good role model for your children, and lead by example, if we truly are going to be a loud voice and raise autism awareness around the world.

As you open yourself up to the possibilities of new friendships, be patient with me and other parents of autistic children.  Even if it takes numerous invitations, keep inviting our families to do things with you.  Just remember that when you invite us to do something, images immediately start flashing through our heads of dangerous situations that could arise for our children.  Find out what sensory issues are challenging for the autistic child.  It could be loud noises, lights, being touched, large crowds or a number of other things.  Try and pick a venue that meets their needs and that is safe.  There will be challenges, but every single friendship has challenges and it will be worth the extra effort.

So if you’re thinking of a way you can take part and raise autism awareness in your community, be a friend.  Sure, it will be unlike any friendship you’ve ever had before and you might have to be extremely patient and understanding at times, but I can guarantee you that it will change the life of both of you forever!  Just be like Payton, and you will change the world!

 

 

 

 

10 Comments

  • Katie Lane says:

    Just beautiful, Amy! What a special family. I hope your paths cross again one day!

  • Mary A says:

    They are a wonderful family. I remember a 10 year old Tammy knocking on my door when I was 6 onths pregnant with my first child. She wanted to babysit when he was born. Shortly after she turned 11 she was babysitting my 4 month old baby. She was there for all my kids and I could have not raised them without her. Seems like Payton is just like her wonderful mother. I wish all my special need students had someone like Payton/Benjamins in their lives, they make such a postive difference in the lives of others.

    • admin says:

      I’m so glad that you know the Benjamins too, Mary. 10 year old Tammy sounds EXACTLY like Payton! I hope Payton, JoJo and DJ know how incredible their parents are and what an amazing job they’re doing raising them. You never truly appreciate your parents until you become one and then you wish you could go back to your childhood and make their lives just a little bit easier. It’s funny how the lessons you learn in life could be so applicable in your childhood, but you have to go through the trials of them all to make the lessons really stick. My heart hurt so much as we watched them drive away. I hope my Bri finds another friend soon, but I fear Payton is irreplaceable. I wish they all had a Payton too!

  • Sherry says:

    The Benjamin’s are a special family indeed. Your post touched my heart. My youngest is not autistic but has some special needs that can effect her socialization skills. I have lost enough friends who weren’t patient or didn’t understand my daughter. I started to automatically put a protective wall up when we meet people. My oldest was often invited over to play while my youngest stayed home with me. It hurts your heart. It was one of my favorite things about the military… knowing we would be moving and leaving the hurtful events behind but keeping the wonderful friends.

    The first time one of my friends came to my youngest daughter’s event I burst into tears. Friends were always coming to support my oldest, and I thank them, but our youngest didn’t get that type of support. It was a special day. She is older now and we have had years of behavior modification therapy so things are much better. I don’t worry as much but the fear of rejection is always there.

    I know this is rambling but I just wanted to let you know that you are not alone and others do understand. I am so happy you and your family got to know Tammy, Dave, and their kids and have this experience.

    • admin says:

      Thank you so much for your sweet comment, Sherry. Having a special needs child really isolates you at times and it’s so comforting to know that others know exactly what you’re going through. I know how painful it is for me, and it hurts even more thinking of all the other parents out there hurting too. Hopefully more families like The Benjamins and more children like Payton will step up and show everyone around them how to be accepting and loving towards all mankind.

      Putting a protective wall up and isolating your family even more is the only way to survive sometimes. There are so many hateful and hurtful people in this world that seeking shelter from them is sometimes the only option for survival. Thankfully amongst those individuals that are lashing out at others because of the pain inside themselves, are people like Payton and her family. Let them be constant reminders to all of us that sometimes letting down your guard can lead to unexpected surprises.

      I’m so thankful that things have gotten easier for your youngest and that your friends finally opened themselves up to what they were missing for all that time. Hopefully your daughter was able to open their eyes to a world of acceptance and wonder at the things our children can accomplish while overcoming obstacles so many of us don’t have to face.

  • payton benjamin says:

    thank you so much miss amy you and your family have a very speical place in my heart

  • Tammy says:

    Well! Don’t know we have EVER been this famous!! HA! You know we love your guts! All of you! We miss you all soo much! Payton LOVES the blog! Every time we see a train we warm up inside thinking of Brian. We miss him rearranging our bathroom and enjoying our detachable shower head 😉 So many great memories. Sad we can’t be there to continue the fun. We are going through withdrawal! And might I add…You are sweet to say you understand when your friendships have to end. But, my dear, I KNOW that will never happen with us. Even though you are a crafty person I love to hate and the MOST patient mom I ever met and you spoil me kids ROTTEN with private parties, I am ALWAYS on TEAM AMY. 😉 We love yall!!!!

    • admin says:

      Everyone is going to know how awesome The Benjamins are!! Make sure to give JoJo and DJ extra hugs, kisses and love from me. I’ll be writing about them later. Molly talks about y’all NONSTOP! I’m not even kidding. She talks about Dave almost as much as Morgan…..I think because she misses her daddy so much. We talk about Payton’s last baseball game almost daily. That apparently was a day that Molly will remember for the rest of her life. So many wonderful memories with your family. True….friendships that don’t end…..just long distance friends….until you guys get your butts back here where they belong!! Love you all!

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