Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! #Friendships

By Mary Ellen Bogucki

I believe friendship can be a difficult concept to maneuver for anyone, but in the special needs and Autism community there are times it may seem impossible. From the moment my daughter, Bree, was born, she had an instant friend in that of her sister, Kailey. Kailey was 2 ½ years older than Bree and was already a “little mother” in the body of a toddler. Kailey loved dolls, she loved playing house and she was over the moon about having a “live” doll called a sister joining her family. Bree’s brother, Danny was 7 years old, when she was born, so not only did she have two loving parents, a second mother/sister, she also had a very protective older brother. I felt confident that things were going to be okay. It didn’t matter that Bree’s sensory issues made it difficult to leave the house. It didn’t matter that she had extreme anxiety when put in “Mom and Tot” classes. She had constant interaction with her older brother and sister in the safety of our home. I hoped that would be enough.

Well, I learned fairly quickly, that her siblings were not going to be enough. She not only needed outside friends, she wanted them. Unfortunately, finding friends proved to be a difficult task. Since her disability wasn’t easy to identify visually, she quickly became labeled as different. Kids didn’t recognize why she rocked her head from side to side and they certainly didn’t understand why she was so worried about losing their friendship. Most adults can’t grasp the comorbidities that can come with Autism. The OCD checking, the rituals and the constant anxiety and depression an individual can live with. It was something her peers just found odd. To many she was just annoying or too much and she was hardly ever invited to play dates or birthday parties. Then we found out that when someone did want to be her friend, they didn’t always have the best intentions. She was being exposed to things we didn’t allow and she was being taken advantage of and wasn’t making good decisions because all she wanted was a friend.

These situations weren’t happening just with her peers; Bree often formed relationships with adults because most adults were kind toward her. Unfortunately, we often saw the same results, Bree was a bother, or she did or said something to offend them. So, they would abruptly end the relationship, leaving her hurt and feeling stupid. Those situations were by far the worst for her to get over, because she thought adults would understand. If only the person would have communicated with her, she may have learned from the situation and would not have felt discarded, like she didn’t matter. These are all very real situations that occur with individuals with disabilities. So, what do we do? Do we allow them not to have friends? Do we avoid relationships with others?

For a long time, many thought those with Autism preferred to be left alone. That they didn’t want to socialize or didn’t know they weren’t included. What we are realizing is that couldn’t be farther from the truth. They may separate themselves from social situations as a way to escape the sensory stimuli bombarding them, but they are very much aware of what is going on around them. There are many articles written about how those with Autism and other disabilities do want what everyone wants, they want friends. They want real friends and friendships, not just superficial relationships. They want to belong and be included.

This is what worked for us; first we found a place that Bree could be accepted and included. For us, that was Special Olympics. It took time for her to become comfortable and learn to interact with her peers there. Once she became older and more relaxed, she started playing team sports and meeting kids closer to her own age. She started making friends and having play dates. Many times this was something I initiated with the other parents. Many like us, had become leery and hesitant to expose their child to another failed friendship attempt. My mother always told me “To have a friend, you need to be a friend!” This was true for not only my daughter, but for me. I had to put myself out there and establish a relationship with a parent. When a child has a disability, most families spend time running from one therapy session to another. Friends and socializing became another important therapy and one that helped her continue to grow.

We also enrolled her in classes and outings with NISRA, our local Special Recreation Association. She would have opportunities to do things without her siblings or parents always there. She learned to become more independent. They had trained staff which would help the kids interact and stay engaged. As I met more Special Olympics athletes, I heard common stories from the individuals and their parents. They told me that outside of Special Olympics, their child was still struggling finding friends. They were lonely when not participating in a sport.

Another mother and I decided to start our own group called “Friends Finding Friends” we included those who may or may not play sports. I will never forget the first outing we planned, one of our friends told me he was so excited, because he never hung out with friends before and always wondered what it would be like. Our first event was an outing to go bowling.There was five individuals and some parents. It was amazing and we all truly enjoyed ourselves. Since then our little group includes over 100 people. We don’t all get together at one time, but we usually have 10 to 20 individuals participate in an event. The other mom and I will plan an outing and have a private group on Facebook where we post our outings. The group is only word of mouth and people can invite only those they know and trust. We ask that a parent or sibling attend with the individual. The parents hang out parallel to the participants and initiate conversation when needed. Mainly, we share experiences and knowledge with the other parents. Today, the group has become just as important to us, as to our children.

We have realized how important friendship is for those with disabilities and we have found a way to offer a safe and fun environment. Over the past few years that our group has been established, we have seen our participants grow in their social skills and extend these relationships even outside the group. I encourage you to find a way to expose your child to friends. It may require some time and effort, but in the end the return can be incredible for everyone.

 

Mary Ellen Bogucki is the mother of Breanna (Bree.) Bree is a twenty-year-old college student, runner, singer, special needs advocate, Special Olympics athlete and Global Messenger.  Bree has been diagnosed with high-functioning Autism, OCD, anxiety, situational depression and sensory processing disorder. Follow along as her mother describes where Bree began and how she arrived where she is today.  Mary Ellen will explain what helped Bree improve, along with some mistakes they made on their journey. By telling their story, they hope others will find hope and comfort.  Bree currently is attending Harper College in Palatine, Illinois pursuing an Associates Degree in Human Services.  She is a member of their Cross Country and Track teams and the President of the Access and Disabilities Success Club.  Harper College offers a Transition Autism Program (TAP) to help those with Autism transition from high school to college.