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

BreAnn is a wife and mother to two beloved children.  Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate.  They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia.  She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry.  She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.

Friendship–Please Keep Inviting Us

I had a dream the other night that my best friend had a birthday party for her daughter and didn’t invite mine. I woke up grumpy and sad, and it took me about half of the morning to realize the dream was the reason for my grumpiness. Our girls were born 4 months apart and we assumed they were destined to be best friends. However, my daughter Emmaus was born with a genetic disease that has caused her to have a global delay, autism and epilepsy. So while both girls still love each other a great deal, the picture of “best friends” is not quite what we imagined.

After figuring out the root of my mood I picked up the phone and called Emily, my bestie.  I told her that it was important to me that we be invited to things like birthday parties.  That we might not always come, but that having the option was really important to me. As always, she was gracious and thanked me for letting her know, and she validated that my request was important to her as well.

A week later we got an invite to a cookie party from another dear friend of ours, Sarah.  She called me and said that “it just seemed right that myself and Emmaus come if we could.” She had run the idea past Emily and Emily shared my dream with her. On top of that she wanted to know if it would be okay to share a little about Emmaus with the other second grade moms and girls, so they could be prepared and know how to best interact and accommodate a friend like Emmaus.  To say I felt loved in those moments is a massive understatement.

Do you remember the first time the isolation set in? For me it was a lovely spring day, years earlier, with some of those same friends. We took our kids to the park.  Emmaus and I sat on a blanket, alone, while everyone else played and chatted. I remember realizing that my daughter could not sit up to swing, and she was too big for me to hold, so I could at least go socialize. I felt invisible on that blanket watching the other moms chase their kids around. Did no one realize we couldn’t do the same? Did anyone even care?

This special needs life doesn’t always lend itself to inclusion. Especially in the social arena. But what has changed since that first isolated encounter is me. I have learned to be bold and say “The park isn’t a great option for us, could we (insert activity) instead?” I have learned to host, because often my daughter feels most comfortable at home. I have learned to be brave and attempt an activity knowing full well it might be short lived. And I have learned to be okay with “missing out” because sometimes it is not worth the effort. 

My friendships have changed, some have completely dissolved, but being willing to be vulnerable and share our needs even in the arena of friendship has lead to some rich relationships for myself and my daughter.

Written by Laurisa Ballew

Laurisa Ballew is a nurse by trade and mother to a special needs child by fate. She fiercely believes hope and grief walk hand in hand in life, and that storytelling is the universal language that connects us all.  Laurisa has three daughters and writes about the constant humility of parenting in her blog Raising A Sisterhood.

Feeling Isolated in the Midst of Gatherings

The season of holiday get-togethers was upon us.  Church carry-ins, family potlucks, and work dinners began filling up the calendar. With it, our level of anxiety went up as we began thinking about what preparations we would need to make so we could be at each of these events.  Tension mounted as we checked what food was being planned at each activity.  Often, we would find that we would need to bring an entire meal for our son due to his dietary needs.  There was a scramble to figure out how we could make a holiday meal that in some way resembled what everyone else would be eating so he wouldn’t feel too left out. 

At the events, our minds would be on hyper-alert trying to ensure that someone didn’t accidentally give our son a food item that he would react to and reverse months of developmental progress.  We would constantly be monitoring Jordan for signs that he might be on the verge of overload or any indication that he might suddenly melt down.   Picture two soldiers transporting precious cargo to a new location. They are driving through areas that are often friendly, the locals are waving, giving thumbs up to them but they are still vigilant for an attack that might come seemingly out of nowhere.  Their eyes trained to spot things most people wouldn’t notice.  While we would engage with friends and family, our guard was constantly up.  We were amid people who loved us but we still felt alone.

As I think about these struggles, I can’t help but think back to the very first Christmas.  The angel Gabriel came to Mary and let her know that she would be giving birth to the son of God. During this time, Gabriel also told her about her relative Elizabeth who was experiencing her own birth related miracle. Just a few days after receiving the news, Mary traveled to be with Elizabeth.

Elizabeth and her husband Zechariah had been unable to have children and now were old. Zechariah was a priest.  He was in the temple sanctuary burning incense when the angel Gabriel met with him and told him that he and Elizabeth would have a son who was to play an important role in preparing the way for the coming of the Lord.  Zechariah questioned how this could happen since both he and his wife were so old.  As a result of his doubt, Gabriel told Zechariah that he would be unable to speak until their child was born.

Imagine the relief that both Mary and Elizabeth must have felt to have had someone that they could talk to.  Mary likely received many incredulous looks from family and friends as they found out she was pregnant and probably had many of her own fears and doubts.  What a relief to have someone that believed her and didn’t question her story that the baby she carried in her was the son of God.  Imagine what it would have been like for Elizabeth not being able to really talk to her husband about the baby growing in her and not having other women in the community who could relate to what she was experiencing.  How extremely valuable it was to be able to have someone there who got it.  They valued each other’s company so much that Mary stayed with Elizabeth for three months, until just before Elizabeth was due.

If you find yourself feeling on guard this Christmas season and just trying to get through it, take comfort in knowing that you have a heavenly Father who sees you and knows what you are going through.  You might not have angels singing in the sky above you, or shepherds coming to your door, which is probably a good thing…talk about sensory overload, but the same Father who sent a star to guide the wise men to their Savior knows your every need, your heart, your struggles and is with you when you feel alone.  He didn’t just provide a Savior and turn His back on you but He is with you every day.

I’m praying that this Christmas season, when it is so easy to lose sight of why we are celebrating and when our precious routines are thrown out the window, God will provide you with an “Elizabeth”.  That He will direct you to someone who gets it, that you can encourage each other and that this season truly is a season of celebration. You are not alone.

We would like to hear from you.  What is your biggest challenge during the Christmas season and what helps you the most during this time?