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…
Written by BreAnn Tassone
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.
The Angels of Our Path
It seems from the moment we realized we had a magnificently special child, the angels were there. At the time, we may not have recognized them as such, but I can assure you that they were there.
Written by BreAnn Tassone
It seems from the moment we realized we had a magnificently special child, the angels were there. At the time, we may not have recognized them as such, but I can assure you that they were there. God sent people smack dab into our lives, seemingly out of nowhere, that would make a significant impact on our experience as a special needs family. If you are just starting this journey, keep your eyes open for them. They are there. God is guiding you through their care and knowledge and acceptance.
As clearly as I can see those people now, there were moments when I was so distraught over the people that I had thought would be there for us and weren’t, that I almost missed them. There are definitely people that don’t understand how to shepherd you through this type of grief and confusion and the figuring it out time that comes with learning the ropes of special needs parenting. I think it’s okay to feel disappointment about that, but to understand that we are all just human. Our friends are human, our family members are human and with that comes differences in how we handle things. Even if people we expect to walk with us don’t, it is okay. God sends who we need when we need them. The number of angels that have been sent our way far out measures any disappointments we felt along the way.
Each heaven-sent guide, led to the next and the next and the next. This chain of help and healing and connection is remarkable to trace back. People speak of “word of mouth” when asked questions like, “How did you locate your Occupational Therapist?” or “ What led you to that preschool?”. I don’t think of it as “word of mouth”, but as God’s voice leading us in the right direction. I often pray for God to lead me. I promise him that I am listening. If he will lead me, I will follow.
I have followed these little nudges and as a result, we have found our way thus far.
The therapist that “everyone loves” somehow had an opening for us in her very full schedule. She became our first guide. She taught me about what my son was struggling with, she led me to appropriate care providers for him, she coached me on what he needed, and she gave a name to some of the things we didn’t yet understand about him. To this day, we feel her impact in my son's life every day. She led us, also, to the next of our angels here on earth. My son’s first preschool teacher. Without her love and care, my son might have never gotten the chance to experience school. She held his hand and accepted his differences while she championed his strengths. The bond he still shares with her is like no one else in his life.
Through a course of wild coincidences, our next angel flew in. She gave my son the chance to learn about the Lord. As a special needs family, we struggled to find a church that was a fit for us. This woman gave us a place. She runs the special needs ministry at a very loved church in our town, and when we met her we found our church home. Her guidance and friendship and loving care of our son and other children has allowed for acceptance and inclusion to grow in our community. My son, thanks to her, was able to participate alongside his peers and take part in all of the childhood church experiences that other kids typically get to enjoy. She led us, also, to another of the angels in our life. This next angel came into our lives as a suggested summer camp aide for our son. She was just finishing high school, and she spent the summer with our boy. To this day, she is one of the only people I fully trust to leave him with. She connected with him instantly and learned him and loved him. It takes time spent together to really know and bond with a child, and this teenager invested more into my son than I could have ever dreamed.
The dear friends and family members that have tucked in with us and been a part of our day-to-day life are also a part of this squad sent from God. They’ve listened and comforted and been strong for me when I couldn’t be. Then they listened some more. They’ve withheld judgement and just been there. In it. This group just seems to grow as time passes. Our lives were blessed with even more angels as our son entered elementary school, before we decided to homeschool. The relationships he formed there have continued on well after our leaving. Buddies from church, hair stylists, and the list goes on, one after the next, have become interwoven into our story and our hearts. These angels and the many more we’ve met along the way, are our people. Our team. Whether we still see them everyday or not, they remain with us. They are forever family to us, and our gratitude to them and to God for sending them is immeasurable.
As you travel this journey, look for the repeated names, the coincidental meetings, and know that there are no accidents. Keep your eyes and ears open for the angels sent your way. You will find them.
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.
When Our Faith Falters We Need Faith-filled Friends
There were times I couldn’t muster the faith I knew I needed. I wanted to have faith. I wanted to trust God. But, I didn’t. Written by Sarah McGuire
If you read You Are Not Alone, you know that I had some significant struggles with questions about God and my faith. There were times I couldn’t muster the faith I knew I needed. I wanted to have faith. I wanted to trust God. But, I didn’t.
Yes, I trusted Him for my eternal salvation, but I didn’t trust Him for how my daily life was unfolding. I felt ashamed. I knew where I wanted to be – at peace and rest in His arms, not worrying about the things of daily life, because He’s got this! But I couldn’t seem to get there on my own.
I claimed, “I walk by faith and not by sight” and said it a hundred times per day some days. Reminding myself that walking by faith doesn’t mean everything works out or makes sense, yet I could trust God anyway. He has a plan. But in reality, I felt more like, “I stumble blindly.” Period. The end.
This bring me to Mark 2: 1-12. Jesus is preaching at a house and so many people come to see him there’s no more room, not even outside the door.
You’ve been there, right? An 18-year waiting list for services your child needs. A doctor or therapy that might help, but it’s too expensive and insurance doesn’t cover it. You need rest SO badly but can’t access respite services. There’s help in view, but you can’t get to it.
Back to Mark 2. A paralyzed man arrives carried on a mat by four men. He couldn’t get to Jesus on his own, so four people carried him! I don’t know how it came about, maybe he asked them to carry him or maybe he protested the whole way, “Put me down. I don’t want to be a bother. I’ll be such an inconvenience.” We don’t know.
They arrived to find the house where Jesus was filled to overflowing. Did his helpers stop there? No. They made a hole through the roof and lowered the man down right in front of Jesus. “Seeing their faith Jesus said to the paralyzed man, ‘My child, your sins are forgiven.’” Because of the religious teachers who were present and their thinking that was a blasphemous statement, Jesus went on to heal the man physically as well!
The phrase that stands out to me in this recounting is, “Seeing their faith…”. “Their,” plural, not “the man’s” or “his” faith, but “their faith”. Whether this indicates all five of them or not, I don’t know. But it does refer to more than one of them. Whether it applies to the man who was paralyzed or only to his helpers, I do not know.
What I do know is that the faith of the man’s helpers played a substantial part in the man being forgiven of his sins and physically healed. Sometimes, when our faith is weak, we need to depend on the faith of those around us. We need to let their faith carry us for a time.
Do you have faithful friends who can speak words of encouraging truth, said with grace, to you? Do you have friends around you, who, when you struggle in your faith, can pick you up on your mat and carry you where you need to go? That is what Christian community is all about! If you don’t have that or don’t have enough of that, come check out the Hope Anew Online Community and let’s walk this parenting kids with disabilities journey together!
Written by Sarah McGuire
The Accidental Sleepover: How We Were Blessed By Blessing Others
One of the greatest challenges my son deals with is making relationships with his same age peers, whether typical or special needs…Written by John Felageller
One of the greatest challenges my son deals with is making relationships with his same age peers, whether typical or special needs. While he is friendly with some of the neighbor kids and a few of his friends from school, having him make “real” friends is something my wife and I are still very much working on.
We were amazed at the blessing our son received when a close friend down the street called my wife in a panic to let her know that her special needs son had an accident on their play-set in the backyard, so they had to rush him to the emergency room. Expecting a long day and night at the hospital, the mom had asked us if we could take her other son, the typical brother, to stay with us and possibly spend the night. My wife hurriedly said, “Yes” and within several minutes came the young boy, complete with an overnight bag. We prepared for what would turn out to be our son’s first sleepover.
Now hosting this type of a sleepover is a slightly different endeavor than those of typical kids, since our son is used to his standard routines of his favorite TV shows, iPad time, lots of eating and maybe some outside time before bed. Since our son can also not communicate verbally, it’s not always easy to figure out how he may want to interact with his friends.
Luckily, as we inquired with the boy, we discovered that many of his favorite things were things our son enjoyed as well! One of the first things I offered him was playing games on the Nintendo Wii, which is great for my son since he enjoys a lot of the sports games that I can give him an assist with. When we suggested some other movies or shows they could watch, they were also ones our son instantly gravitated towards. And, of course, dinner time was great for bonding, as we managed to get them both to sit down for a meal.
By the time we got to the nighttime stuff, our son went to his bed, but this time very excitedly and with a huge smile glued to his face. When my wife asked him through his iPad if he was glad his friend had come over, he confirmed with a hearty electronic “YES.”
The next morning we all got up, had breakfast, the boys watched a little TV together and we got ready for our usual Sunday routines. Our neighbor dropped by to pick her son up to go home. Confirmation that the night was a success, came later that day when the boy let his mom know he wanted to do it again!
We then realized that our willingness to bless someone else in turn blessed us in ways we couldn’t imagine just hours earlier. Comforting others in their moment of crisis allowed our son to be comforted with a gift of friendship, and a memory of his first sleepover, accidental or not, yet totally joyful.
“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.” (2 Corinthians 1:3-4, ESV)
Written by John Felageller
You can follow John at https://www.facebook.com/johnsspecialneedsblog/