If you build it they will come. They really will.
It has been our experience, as a special needs family, that unwanted isolation can slowly creep in. And I think it comes in three distinct forms.
The first being an element of self-isolation.
There can be anxiety surrounding unknowns, and there can be comfort in sticking close to home and routines. At home, you can control your environment. Also, some things that typical families are doing just don’t work for us. For example, we are not sitting in the bleachers at little league games chatting with and growing community with other families. Before you know it, even very social people can kind of step back from the social experience they desire.
A second way isolation can sneak in is purely through absenteeism.
Individuals with special needs sometimes also have health struggles. Not to mention the many appointments per week for different types of therapies and the like. That is the case in our family, and we are absolutely the family that has to cancel sometimes. Okay, a lot of times. We are not always able to attend things that would grow relationships and foster more social involvement.
Thirdly, I have seen isolation occur for our family when others operate in such a way that we are set aside and isolated from social settings.
I don’t assume this is ever done with intention. I even suspect that some very well-intentioned people would be shocked to hear that they played a role in setting us apart. There is an element of feeling invisible. Inclusion is a buzzword that you hear about all of the time. However, the number of times we’ve truly experienced it has been, up until a certain point, fewer than you would think. It is sometimes hurtful, and really not something I even understand. Yet, as I endeavor to share my true experience, I have found times when it’s clear that many people are just starting the process of learning how to navigate interaction with a special needs family. As an insider, I would tell them, there’s nothing to navigate. We are just a family. We are a family, just like any other family.
I decided we would not sit and view life from the sidelines. I didn’t want my family's story to be negatively impacted beyond repair, due to anxiety, circumstance or the impact of others behavior. I kicked and screamed, figuratively of course, and put us out there over and over again. It really felt like grabbing at straws trying to find our village. I so strongly desired for our family to have a village around us. I wanted to experience life with other people. I think there is so much value in “doing life” with others.
A dear friend saw me grappling with this and encouraged me to create the opportunities that I desired for my entire family. I also felt those nudges from God. You know, that feeling that you need to do something and do it now. That feeling that just keeps coming back again and again until you listen. I was nervous, but determined.
The first thing I did was start a monthly Mom’s Dinner Out. I looked about my life, and saw women that I enjoyed being with, sprinkled throughout my week. There were women that I’d loved for years, including the one I mentioned earlier. There were women that I loved that had more recently entered my life, and there were women I’d only met a few times. None of them knew each other, but each knew me. I knew I needed some connection with other moms. So, I took a deep breath and hit send on the first evite. That dinner club met almost every month, or every other month, until Covid put a pause to things. I cannot tell you how life-giving it was for me. Each month, a different group of ladies came, and we laughed and shared life for a few hours. New friends were made. I can’t wait to start back up as things continue to get back to somewhat normal in the near future.
The next thing I did was create a similar experience for my special needs child. I, again, took a deep breath and posted my idea for a weekly social skills playgroup on nearly every homeschooling and special needs social media page my friend and I could find. As a result of those posts, I was able to find an incredible special education teacher to lead our group in social skills lessons. I also found community for my child. I watched him form friendships. This group led him to make friends that can understand some of the things that his other loving friends can’t fully relate to. Every child there can just be their true and authentic self, without fear of judgement, that of children or other parents. I watched as my child, that I knew wanted and needed social engagement, grew in confidence. As life-giving as my dinner club was for me, this growing group of children is for my son.
I did one last thing. As a person who is determined not to let our differences impact our experience, I created a monthly field trip group for all children. It has grown to include any family that wants to attend. It is an amazing mix of homeschooled and traditionally schooled children of every age. There is no setting anyone to the side in this group. It has brought friends that we never would have met otherwise, and friends that we hadn’t seen for sometime. It has given us a focus and a place to be.
I’m thankful that I listened to those nudges from God. I continually thank my friend for her sage advice and encouragement when I needed that push to go make things happen. And, now I’ll pass along what she recently said to me, and you’ve heard it before, but this time hear it as it can apply to your life.
If you build it, they will come.
They really will.
What do you pray for that is lacking in your family’s current view of life? What nudges have you been getting from God? I implore you to step out of that comfort zone and put yourself out there. There are other people waiting for you to do it. There are people desiring the same things you are. It is my prayer that someone, who may be feeling alone and isolated, will read this and go for it.
Written by BreAnn Tassone
