REST

I had big plans for the vibe my family would have.  I love classical music and jam band music and Bob Marley.  I love cozy blankets and crackling fires.  I love the beautiful smells and sounds and sites of nature.  I love all things calm and soothing and soft and comforting and chill.  I think it’s always been my way to cope with my own anxiety, and I always pictured the perfect workplace for me would be a spa. I had every intention of carrying that vibe over into how I parented and the lifestyle our family would thrive in.  

Oh boy.  It has been far from the reality of how things have been going.  In muddling through the parenting of young children and the task of figuring out the special needs we have in our home, it has been anything but chill.  It has been beautiful and full of love and happiness, but it has also been frantic, electrified, a tad loud and flat out buzzing in our home.   I laugh as I type this, because we can plan and envision our future all we like.  We just aren’t in charge of the twists and turns our life will take.  My sharing this is in no way a complaint.  I have none, aside from the fact that I’d love a little more sleep.  Just a little.  It's a fact.  Our vibe is the opposite of the therapeutic calm I maintained in my home as a single woman.

I recently read an article about the effects of hyper-focusing on our children.  I think the piece was probably written with a typical child-rearing experience in mind, but it stung a little reading it.  It made me ask myself a couple of questions.  Am I too hyper-focused on the needs in our home, and missing the calm and chill we all would benefit from?  Am I able to turn this buzz off by creating that vibe I so desire here, that I had always intended before things got so hard? Can I just rest even within the frantic?  Those thoughts all flew through my mind as I read this article.  

Then the thought that pops into my mind so often, did just that.  It popped in.  “But, we’re different”.  I have to constantly assess needs and if I’m not focused in, I might miss it.  One of the systems we have in place, may fail if not surveilled each moment.  And we are different, but hasn’t it been my mission to convince the World that all people are different, and in that way we are the same?  We are not so different, that this message should not apply to us as well.  We are loving parents. Ensuring that every need is met is important, but the focus of our entire family life does not have to be based on our children.  While meeting the special needs we’ve encountered, it feels time to rest in terms of the hyper-focus I’ve felt to this point. 

It occurred to me that I had gotten very swept up in figuring it out and in the research and in the moments that I felt helpless in. It clicked that my children will benefit from the calm I’ve always clung to as a coping mechanism for myself.  It’s almost as if, in the flurry of the last few years, I’d forgotten how to procure an environment of rest.  

After mulling over this, I started claiming some peace and calm at home for myself, but for my children, as well.  We can parent our special needs family members well without putting all of our focus on parenting.  In removing the unseen microscope from the members of our family, each one can exhale.  And if we need anything, after the whirlwind of navigating PANS/PANDAS in our case, we all need rest.  We need rest during all of the storms of life. 

We are still well within the storm on many days, but I can relax.  My kids can, too.

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.

Hold On Tight

If I could go back in time to those days before his birth, and have a chat with my pregnant self,  I would tell myself this about the parenting journey I was bound for:

1. It will be different than what you are imagining.

2. You will know, but not quite understand, the moment that you lock eyes that first day.

3. You will also instantly know that you are his person.

4. You are strong enough to rise to the occasion. 

5. You were meant for it, and you’ve got this.

6. God will lead you. Hold on to Him tightly.

7. Stop yourself the very first time you read what other babies his age are doing and your stomach drops, because he isn’t doing it yet. Just rock in that glider and stare into those beautiful brown eyes.

8. If you google that missed milestone one time or a million times, and get lost in your mind with worry, that will do nothing to change the outcome. Instead look at how intently he is listening to your voice as you read Goodnight Moon in his sailboat nursery. The worry is useless, and the outcome is not anything to fear.

9. When he begins to roll his toy cars in such a way that you feel it is less play and more some type of visual stim, a word you won’t learn for a few years yet, think about how happy he looks.  Make note of these things, but don’t fret. Instead, choose to enjoy the smile on his sweet little toddler face.

10. When you notice incredible skills happening far too soon in comparison to others, just marvel in it. Don’t read every article written about it, wondering why or what it means that he can do it.  Your nights will be far better off spent sleeping while you still can.

11. At a certain point there will be no sleep, so grab every wink.

12. When the sleep gets hard, you will manage. 

13. In case you already forgot number 4, you are strong and capable.  

14. Your child is also strong and unimaginably capable. Perhaps the strongest, most resilient person you’ve ever known. You’ll see.

15. When he struggles to sit quietly on the mat at library story time, just go to the park instead. 

16. When he runs from you and others say things like, “He’ll come back, just call his name.”, trust your gut and RUN.  He’s not coming back.

17. Start looking for the angels sent to meet him on his path. They are truly everywhere you turn. You will be amazed. He will recognize them right away.

18. You will see him form the most enduring bonds with these people.

19. Don’t waste a moment’s thought on those not meant for him.  He will recognize them, too.  

20. He will have some difficulties, yes.  Who among us is granted a life without them? Focus on the many triumphs instead. 

21. He will be completely misunderstood, as will you. Ignore this. Make no apologies and overlook the judgement of others. Live these days focused on the audience of your one heavenly Father.

22. He will also be completely embraced and accepted. It will bring glee and immense gratitude to your heart each time.

23. You. Will. Be. Enough. Don’t question that fact, but know that your faith, family and dear friends will also carry you when you need them.

24. Begin this prayer immediately. Pray for God to lead you.  Tell Him that you’re listening and ready to follow his plans for your little boy.

25. Walk next to your son, hand in hand, through it all.

26. You’ll learn soon that he’s come here to teach others things like compassion and empathy and humanity.  He’ll teach them some about fonts and logos, as well, but that won’t make sense to you for a couple of years. 

27. Your baby is perfect. One day when he is 8, he will look into your eyes and plain as day, give you every answer you’ve been searching for.  His self-awareness and self-acceptance will put your mind at ease in an instant and bring a calm to what at times will feel stormy.  It will be one of those beautiful moments in life that you want to capture, that you want to freeze inside of. 

28. Always remember that this is his life to live. He was sent here with a unique purpose just as you were. Remind yourself of that in the times when you feel like you must find all of the answers.  

29. You will grow through this time.  Your heart will grow. Your empathy will grow. Your heart’s desire to help other children will grow even bigger than it already was, and now with an entirely different level of understanding.

30. Lastly, it will all be okay.  I promise.  It will be better than okay.  His life will be amazing and full and happy and fun and he will know the abundant love of his adoring Mother.

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.

To The Caregivers

She was three, he was seven and I was in crisis.  I was overweight, overtired and overwhelmed.  I felt so sick and old. 

I felt all of this, but I so rarely reflected on my state of being that I almost didn’t notice that I felt this way at all. I was just not on my own mind in any way. I would read about “self care” and think it such an indulgent luxury.  I would get so taken aback at the mention of it, as if I was making a choice not to care for myself.  Of course I didn’t feel that was the case.  I was allowing my hectic circumstance to be the fall guy for that.  I was so deep into my role as caregiver that I couldn’t see how my body was struggling.  My child was being tested for vitamin deficiencies and receiving appropriate supplements.  Both of my children were eating pretty clean diets free from inflammatory foods, artificial ingredients and they were eating organic choices as much as possible.  I was not.  I was treating my exhaustion with food, and making all of the wrong choices. I was convincing myself that I deserved the joy that overindulging in food brought.  I earned it.  Eating was something I looked forward to.

There was no time for a spa day, or even to enjoy reading a novel.  There was time to get through the day, most of the night, and then crash into my bed, but not before “medicating” with some yummy meal or treat eaten way too late and consisting of absolutely terrible choices.  With zero help in the childcare department, jogs or trips to the gym were also out of the question.  So, this is where I was.    

Then the pandemic hit our world and our world hit the pause button.  Many people began to overindulge and neglect physical wellness in an effort to deal with all of the emotions living through the fear a pandemic brought on.  I suddenly wasn’t alone in this struggle.  So many people started  “medicating” with food as I had been.  Comfort food and sourdough bread recipes were all over social media, and many people soon felt ready to reign it in.  This was my window of opportunity.  Something was awake in me, finally.  I did a deep dive into wellness with others who had gained extra weight during the pandemic.

God led me to a plan that really helped give my body the respect it deserved. 

Encouraged by a family member, I dove in.  I still couldn’t get to a gym, and I still was running wild until far later in the evening than typical, but when I ate I was eating vegetables and meat.  I was choosing fruit and eliminating all of the things my child had eliminated years before.  I cut out those same artificial ingredients and inflammatory foods.  I began taking the supplements my body needed and I started pulling myself out of the fog.  I started loving on myself as I had always done for my children.

Quickly life became easier.  I found I could handle the hectic moments with more grace for myself and my family.  I realized that the way I love and care for my children, is the way God loves me. I was not caring for my God-given body as I should have been.  It is such a gift to be given a body in the first place.  Isn’t it?  

So many lightbulbs started turning on for me.  As much as, my role as caregiver to my children requires, as does my role as caregiver to myself.  It’s easy when you’re navigating special needs or medical fragility within your home to completely forget about yourself.  It’s not at all a case of that horrible phrase “letting yourself go”.  In my experience, it was a case of just completely forgetting my health needs altogether in the flurry of life.  We can’t do that.  We can’t get lost in the”figuring it out” and the “making our way through”.  We need to try to honor ourselves and our bodies and our children will be the beneficiaries.  First off, we’ll hopefully improve our chances of living longer.  Next, when we, as caregivers, feel well and healthy, have energy and aren’t flooding our system with terrible food additives and sugary junk we can care better for those we love.   Finally, I think when you’re taking exceptional care of what God has trusted you with, your heart feels lighter and you can begin to fulfill the role you have before you. 

Our homelife has calmed significantly in the last year.  There are many reasons for that. We’ve found appropriate treatment and a proper diagnosis for our child, we’ve settled more comfortably into this role of caregiver, and we have now turned our eyes toward caring for ourselves in the same way we feverishly care for our children.  

Everyone is the caregiver to something or someone.  It may be a child with special needs, it may be a beautiful golden retriever, and it may be a dear friend. May it always be that we are caregivers to ourselves first and foremost.  If you have forgotten yourself for a bit, as I did, it is my hope that reading this will serve as a reminder of what a gift our bodies are and of how deserving you are to feel outstanding in yours. 

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.

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.

Making Memories Where We Are

Travel.  Wait, what does that word even mean?  It’s been so long since I’ve traveled I almost can’t remember our last real pack a suitcase vacation.  I bet a lot of us feel that way after the year that has just passed.  Many families have been home and kind of grounded from travel. If they have traveled it’s been mostly with the members of their household.  As I watched how people were affected by that and how they responded to having to stay home rather than travel or forego the multi-family beach house, it got me thinking.  I started thinking about how it didn’t feel all that different to me.  I thought about how I’ve been watching families experience travel and vacations from the pages of my social media accounts for years, while seated on the same couch cushion of my sofa.  It dawned on me that this past year gave other families just a taste of how families like mine often function.  

Every member of my immediate family loves to visit and explore new places.  There are various reasons that our opportunities to vacation have virtually come to a standstill, one of them being finances. The cost of therapies and such can add up, and really do a number on your disposable income.  Another reason is that certain invitations to travel that were once there, are no longer there.  None of the reasons, though, are the needs of our exceptional child directly.  Our family could easily accommodate those.  Families in our position know how to make the correct arrangements and preparations. 

If this is your situation, please know that you are not at all alone. For our family, regardless of these hurdles, we were determined to still get out there and experience wonderful times outside of our home.  We’ve really found great ways to work around the obstacles and continue to see new places and find what we like to call “adventures''.  Our adventures consist of day trips doing anything we can find with the one requirement of being back home by bedtime. I’ve become our resident adventure planner, and my family has come to depend on these day trips.  So much so, that the first thing I’m asked on a Friday afternoon is, “Where is our adventure this weekend, Mom?”  

They may not be the same as a week in some fancy resort, but our little day trips have really added to our life experience.  You don’t have to miss out on getting away, just because of your family's differences.  It can just look different.  We’ve visited landmarks and historical spots that I never knew about.  We’ve had beautiful days in state parks and on the beach. We even found an app that guided us through a driving tour of Washington DC!   I do my best to plan every detail, so I can pack our minivan chock full of anything and everything we will need for the day.  With certain food restrictions among us, and special diets, I stock the backseat with a cooler full of approved, but exciting, choices for snacks and meals. We really make a pretty big deal out of these trips.  I tuck in special blankets and use fun pillowcases, to help make that van seat cozier than just a typical weekday trip to the grocery store.

I think it all boils down to finding the joy right where we are.  I don’t mean physically, but more where we have found ourselves right now in life.  Travel does not need to be extravagant to be memorable.  Sure, it may be a while before we’re planning our family adventure to DisneyWorld. In the meantime, though, I can’t think of anything more joyful than the look on my children’s faces as they hop into that loaded up Honda Odyssey bound for a day spent discovering and making beautiful memories.

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.

Weeping may endure for a night, but joy cometh in the morning. Psalm 30:5

To me, there are no more comforting and hopeful words than those. That’s my verse.  A lot of people have a verse that just feels all their own, and that one has helped me up and held me up, has rocked me to sleep, and has carried me to morning many, many nights.  Of course, it isn’t solely my verse, it may very well be yours, too.  I think it brings solace to people in many stages and situations in life.

There is a certain amount of daily trauma that goes along with figuring the ins and outs of life for a child that is exceptional in one way or another.  At least, there is in our situation.

There is the  trauma I have felt as a mother waiting through an entire school day, just praying my child doesn’t wander from campus.  There's the trauma I’ve felt as a mother watching my son live life with a chronic illness and almost daily physical discomfort.  There’s the trauma I’ve felt as a mother watching many aspects of childhood just pass us right on by. I tend not to focus on the parts of life that are painful.  However, the mental and emotional toll is great.  For me, the worry is the hardest part to shake.  

I just want to do this right.  I want my children to live the very best life they can.  I think that’s what every parent desires.  So, those calls from school, the staring eyes at the grocery store when behaviors completely out of my childs control creep in, the setbacks at home--though they are mixed in with wonderful moments of thriving and progress and utter happiness, they are the ones that bring tears in the calm and stillness of night.  Those moments are the ones that flood my mind as I’m trying to sleep.  They seem to land on my heart and the weight can feel unbearable.  They lead me to reach for my phone and begin the reading and researching that I’ve spent countless nights engulfed in.  They lead me to strategize and come up with plans upon plans to help ease my child's pain and struggle through the tough spots.  

Then I think of my verse.  Weeping may endure for a night, but joy cometh in the morning.

Just recalling the words, stops me.  In the act of remembering that verse, I am suddenly brought back to knowing that I am not alone in this, and I don’t have to carry this on my heart alone. The heaviness lifts.  My children are not alone, either.  The hope and reassurance that my child has a beautiful and heaven-sent path ahead floods in.  It’s a cue to stop the wheels of worry and turn to my faith and hope instead.  

I’ve been down this road a night or two, and yes, joy always comes in the morning.  Nothing in the bright sunlight of a new day is ever as dire as it seems in the darkness of the night before.  The hope of a new day is real.  Even though our circumstance is still just as it was, there’s a clarity of mind and a different perspective that comes as we wake. 

When the night feels hopeless, it is a gift to me to be able to rest in the hope of the joy that is surely to come.

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.

Thoughts For This New Year

Resolutions.  I never stick to them.  I have sincere intentions about improvements I want to make in my life, but that format of resolving and proclaiming to do it never has worked for me. 

This new year comes with so many prayers for a better experience for us all.  Having that much expectation of our hopes and dreams placed on the new year, the last thing any of us need is the feeling of ,yet again, another failed attempt at a resolution.  So, this year I’m trying something new. 

If there’s anything we can all take away from 2020 is that there are many more ways than one way to do something. We have learned to think outside of the box, to make it work with what we’ve got, and how to adapt.  I’ve used those freshened skills to construct my New Year Checklist. 

To me, a checklist gives you some time.  The items on the list are there until you’ve completed them and crossed them off.  There is also an end. It isn’t this proclamation to live up to from now until eternity.  It’s just a list of things you’d like to get done.  Here goes!  

My 2021 New Year Checklist

1. Begin (and maybe finish, but not a requirement) a crocheting project.

2. Read for pleasure.

3. Sew something for each of my children.

4. Continue to work on forgiving those who have never asked for my forgiveness.

5. Show up.  Refuse to cancel.  

6. Continue to write.

7. Sing every chance I get.  Anytime and anyplace I’m asked.

8. Create the peaceful home setting I yearn for.  Do this by being conservative with screen time, filling the home with comforting scents and calming music, and building a reading culture within my family.

9. Spend more time cooking with my daughter and foster her already strong interest.

10. Create more opportunities to enjoy the outdoors with my son.

11. Put on my makeup every single day.

12. Touch base with forever friends at least monthly.

13. Fill in my daughters baby book (Yikes!  She’s turning four in February and not one stroke of an ink pen has hit the pages in her book).

14. Spend a portion of each day in meditation and focused, specific prayer.

15. Find opportunities to volunteer within my community.

16. Finally join the church that we’ve been visiting for two and half years.

17. Make it a priority to meet a friend for coffee.

18. Create a realistic weekly cleaning schedule.

19. Make those important medical appointments!

20. Forgive myself.  Allow myself grace when needed.

21. Breathe.

There it is.  My 21 things for this new 2021 year.  My kids have checklists for everything.  This one is mine. They are mostly self care items and very personal to me and my life, and that’s intentional. Yours will look different than mine, but as a caregiver we must endeavor to care for ourselves, too. Special needs parents and parents of children that are medically fragile, need to make a point to care for themselves.  This list is my way of attempting to do that.

To be totally honest, some of these items have been on my to-do list for a few years now.  Our daily plates are pretty full. The time just isn’t always there to follow through.  That’s why the list is good.  If it doesn’t get checked off this year, it just rolls over to next year.  And as I go back over my list, it really boils down to an attempt to improve my day to day experience, to take care of long overdue business and prioritize the right things in my use of down time. 

May your new year be one of peace and hope.  May you find little corners of time to pamper yourself, even if that means to stop and take a few deep, cleansing breaths.  May you grow in your faith and hold strong to it when fear and doubt inevitably creep in. We don’t know what will come tomorrow, so let’s be the very best version of ourselves today.  When we can’t be, maybe we can allow ourselves the grace to pause, and tackle more of our list tomorrow.  Happy New Year.

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.

We Are In God's Loving Hands, Always

One of the hats that special needs parents wear is that of a risk assessment manager.  Depending on the special needs your child has, this looks different.  In our case, without even knowing that I’m assessing risk, I am nearly always assessing and maneuvering around potential meltdown triggers, dangers and needs. It’s amazing how fast I can survey an environment and pinpoint each and every possible worst case scenario.  How fast I then come up with a contingency plan for each possibility and a plan for continued vigilance and surveillance until our time there is over.  I am always two steps ahead in my mind.  Many times the worst case never happens, but many times I’m right on and I am ready.  My kiddo sees these risky spots just as quickly as I do, it seems.  He is also super vigilant in his surveillance of a room. For this reason, I am just always on my toes. 

There are emotional risks that are also assessed.  Will we be embraced or accepted as we are in this environment?  Will our hearts, both my child’s and mine, be safe in this space, with these people? I can make sure that a door is locked, or that there is appropriate physical accommodations made for our needs.  That part is easy.  It’s the emotional risks that often give me the most pause. 

There was a time that my heart had been hurt by watching how some people respond to us.  I was so afraid of my child ever feeling like he was less just because of things that are completely out of his control, and of myself feeling that parental pain of observing that, that my first thought would be to sit it out.  I never did.  I wanted to.  I wanted to protect us from the emotional risks so badly, that I’d consider missing the parts of life that make for a full and vibrant existence.  

I never benched us.  We never sat out, and you shouldn’t either.

Instead, the route I’ve chosen to go when it comes to shielding our hearts, is that of specific and focused prayer.  We go.  We are now making our way through the Christmas season.  A time of excitement and hope and waiting.  There are so many opportunities to encounter this pause.  Should we go?  Will we fit?  I no longer entertain those old fears when they enter my mind.  I take a deep breath and ask the Lord to guide our day, our thoughts and to be with the people we encounter.  I ask that he’ll grow their knowledge and acceptance through their time with us.  I ask that he’ll guide their hearts to be inclusive and accommodating.  I ask that they not treat us like we’re different, because we really aren’t.  And, I thank him for the grace he’s given me, as a parent.  I pray that I’ll be able to give that same grace to myself, as I navigate environments that aren’t set up for us, both physically and more importantly emotionally.   Finally, I thank him for trusting me with this incredible child, and pray that I am graceful in my parenting of him.

Not one thing has grown my faith more than this practice of specific prayer.  When the Lord answers your prayer directly, in real time, it’s life changing, life giving, and sets you free from fear.  Choosing faith over fear is no longer a choice for me.  I just plain have faith.  I’ve entered spaces after praying like this and experienced the most beautiful, caring and loving interactions.  I’ve met people that have become friends to me, and my child has also found real friendship and acceptance, as well.  I’ve felt that we were safe and protected, just as we are. 

This year, there are fewer opportunities for large gatherings.  If you do find yourself looking at an upcoming outing or event with that familiar pause, whatever you do please don’t sit out.  Take a deep breath and pray.  We are in God’s loving hands.  Always.

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 Waiting Room

Before I had children waiting rooms served one purpose.  They were a place to wait.  I’d look forward to those few quiet moments to flip through the pages of a Better Homes and Gardens stashed in the pile of outdated magazines.  I would exhale.  I would zone out.  I would be still.  Then, I would hear my name called and forget I was ever there. 

As a mom, and especially as a special needs parent, I very often find myself in waiting rooms.  However, the waiting is altogether different…

When I’m waiting for my child to complete testing with the school psychologist, or finish a session of occupational therapy, or therapeutic gymnastics, or swimming lessons, the list goes on, it’s never a time of exhale. I am zoned way in.  I am far from still.   It’s often a time of held breath.  It’s a time of anxiety.  I am almost always lending one ear to the task of waiting for signs of the session going awry or hear myself be beckoned to the room.  I can pretend to flip through the pages of a tattered magazine left for waiting parents, but it’s just to fill the time with any kind of distraction.  That is, unless there is another waiting parent there.  That’s when magic happens.

In these places of waiting, special needs parents find each other.  We are all so desiring of community and relationship with people in our same, or similar situation, that when you sit two of us in a room together, we just get to chatting.  A smile.  A greeting.  Then, before you know it, you’ve exchanged stories, you have shed the anxiety that you may have entered the waiting with and are sad when the waiting time ends.  You might, in the case of a recurring appointment, get to see this parent again. You might not. 

Regardless of that, in the midst of these sometimes frantic days, you connected with someone who gets it.  You were given the gift of a pause, a judgement-free exchange and probably even a shared laugh or tear.

I skip out of these chance meetings feeling so heard and so understood and with such an incredibly full cup.  What’s even more magical is when a bonafide friendship begins to form in the waiting room.  I’ve experienced that a few times on this road.  Imagine that, meeting a person in a waiting room, of all places, and bonding nearly instantly over this shared journey.  You just never know who might be waiting with you.  

I can admit that those peaceful days of leisurely and seemingly carefree times of solitude and reflection were nice.  Okay, very nice. They were maybe even dreamy.  I can share too, that this new type of waiting is far more fulfilling. 

If you find yourself waiting nervously for your child to finish up their speech session, pick your head up from that magazine, or from your phone, and look around that room.  Drum up some conversation with the parent next to you.  Even if it feels clumsy or awkward at first, don’t let that stop you.  Push through and take a chance. Odds are they are desiring connection, too.  You will both be blessed by interacting, and you may just make a treasured new friend.  

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.  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.