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.
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
Lets Journey Together, The Hope Anew Disability Podcast
Where are you at in this journey in disability and special needs? Are you the parent who is still searching for answers and trying to wrap your mind around this new diagnosis that has been given to your child? Maybe your overwhelmed with the day to day, the doctor appointments, the emotions that you are struggling with and the pain that you see your child in… Written by Jonathan McGuire
Where are you at in this journey in disability and special needs? Are you the parent who is still searching for answers and trying to wrap your mind around this new diagnosis that has been given to your child? Maybe your overwhelmed with the day to day, the doctor appointments, the emotions that you are struggling with and the pain that you see your child in.
Maybe you are the parent whose child is aging out of the system and you don’t know what lies ahead. Your friend’s children are going off to college and launching into their new lives, while you are trying to figure out what is next or who will take care of your child after you are gone.
Or are you the grandparent? You want to be able to come alongside your children more and support them but you don’t know how. Your grandchild eats a special diet, relies on special medical equipment that you don’t understand or maybe it is difficult for you to care for them because of challenging behaviors over which they have no control. You see that your children just need a break but you don’t know what to do.
Where are you on this journey? What is your story?
This journey can be isolating. It can be overwhelming and you can feel like you are completely alone. In describing how I felt, I used to tell people that I could live in the jungle in Papua New Guinea or in the middle of the city in Fort Worth and feel just as isolated.
Sarah and I began our journey in disability 12 years ago with the birth of our youngest son. He was allergic to literally all food, except sweet potato and on the severe end of the Autism spectrum. Our journey likely has looked different than yours, but we have probably wrestled through many similar struggles.
We would like to invite you into our home the first Monday of every month as we sit down with other families and professionals who have been on this journey and hear their stories and learn from their experience .
During our conversations, we will hear how they have found purpose in the pain and seen beauty in the journey. During this time you will be encouraged. You will feel like there are others who get it and you won’t feel quite so alone. You will experience hope, learn to build a different dream and be better equipped for the journey ahead of you.
You can join these monthly chats by searching iTunes for the Hope Anew Disability Podcast or by going to the Hope Anew website here: https://www.hopeanew.com/podcast.
We would love to hear from you! Please let us know if there is a specific topic you would like us to discuss in our monthly conversations or someone you would like us to interview.
