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.

Disney with Ease

My family moved to Orlando Mid December 2020 and have tried to soak in all the fun that this town has to offer. Being cognizant of the unique needs of our children and our special visitors,  I have become aware of places that go above and beyond to make sure we have an amazing experience. One of those places is Disney.  Disney can be the most magical place on Earth or meltdown city.  Disney has a fabulous team accommodating guests with special needs.  They have a pass called Disability Access Services(DAS).  These accommodations are great and simple to get.  Having the needed accommodations during your day at the park can be vital in keeping the entire family happy.  Having a simple conversation with Guest Services at the parks gets the things in place that are necessary for the DAS pass.  Take a look at Disney’s website for the specifics about the DAS pass. Your first stop once you enter the park is Guest services to begin this conversation.  Here is a review of the accommodations my family has benefited from at the Disney parks and how we navigate a day smoothly:

(Universal Studios has similar accommodations, but I have had fewer visits to their parks.)

DAS Line access:  For kids who may have trouble waiting in long lines, especially in the sun, this accommodation is really helpful.  This is NOT immediate access to the ride, but rather you have flexibility to wait in other areas with a return time.  My family uses the Disney app to look at the wait times throughout the park.  I do this several times leading up to our visit to the park to get an idea of what rides are typically busy at which times during the day of the week we are planning to visit. Once in the park, we immediately check-in with the ride with the long wait time to make our return reservation time.  The cast member setting up your DAS pass can reserve this wait time for you when you meet with them.  The DAS wait time typically reflects the amount of time you actually wait in the line. 70 minutes in line means 70 minutes to use in other areas.  While we have this reserved wait time, we ride rides that have less than 20 minutes posted wait time which is tolerable for my daughter if in the shade.  We also grab a snack break, watch a show, shop or see a parade. Before long, we are ready to ride the longer wait time rides without any trouble.

• When you arrive at the park, choose your wait time for the longest time and check with Guest services.  

• You can only have 1 DAS ride reservation at a time.

• Check in with a DAS pass before breaking for lunch and dinner.  While you wait for meal your wait time will quickly pass

• With 2 adults, one can check in for the DAS line, while the other begins to walk to a show, lunch, parade etc.  We found that it was a challenge for the kids to see the ride and not ride.  

Rider Swap-  When traveling with little people or kids that may not enjoy a ride, Disney has a rider swap program. It took us a minute to figure out what this meant, but essentially, if one parent has to wait back with a child who can not ride a ride, that adult and 2 others can again without waiting.  No one misses the fun!   This will work in conjunction with your DAS pass.  You simply have to ask for a rider swap when you check in to ride the ride after your DAS wait time.  You can have a rider swap time and a DAS time at the same time as well.  

Cards VS magic bands-  My family uses the park issued cards rather than magic bands.  We clip all the cards together and manage our DAS Lines and rider swaps with the cards separated.  The reason for this is that it allows flexibility for the ride access.  We have not navigated the park with magic bands, but feel like it’s an added expense we don't need.  The cards can be swapped around between our family if one child quickly changes their mind about riding on a swap.  

Dining-  Our family finds this down time vital for a smooth park day. We want our kids to take in the healthy calories at these meals and actually rest.  It takes time away from riding rides, but allows for over stimulated, exhausted kids to get a needed break.  Making a dining reservation in advance is important, so when you reserve your park day, be prepared to make your dining reservation.  In-park restaurants are affordable, less chaotic, air conditioned and allow for everyone to rest for a bit before getting into the park excitement again.  If sit down dining is not an option, be ready to make a mobile order.  This option has less wait, but is not as restful for everyone. You can make your mobile dining order several hours in advance to be fully prepared.  Disney is proactive in addressing food allergies.  They ask that you inform them upon arrival at the restaurant of your dietary needs. They have options to accommodate common food allergies.   Disney also allows for guests to bring in their own food if allergies are an issue into restaurants and the park, simply inform the cast members at the bag check and the restaurant.

Relaxation areas-  These areas have been really helpful for my family.  Map out where these areas are in the park when you have a conversation with guest services.  These spaces are air conditioned and quiet.  An over heated, over stimulated child can take a needed break in one of these areas.  We split our group to allow for maximum quiet time in this space.  But while we are not together, we avoid the really desired attractions to do as a family. 

Snacks and hydration-  We have a medium soft sided cooler that fits perfectly under our stroller.  We load it up with ice packs (not bags of ice) and water.  I bring electrolyte powder to add to the drinks as needed.  Another snack tip for park days is freezing yogurt pouches and apple sauces the night before and adding them to the cooler.  They will either be a nice cool treat at the park or just the right temperature at the end of the day.  To minimize germs, I opt for individual servings of snacks which are easy to pack and throw away.  The ice packs come in handy when kids need to be cooled down quickly.  You can refill water bottles with water and get ice at any of the restaurants free of charge. We try to leave lunch with full water bottles!

Walking and mobility- A day at Disney can quickly rack up mileage walking around.  We have walked between 7 and 9 miles on our park days.  Being aware of the amount of walking you may be doing is important.  Taking a stroller even though it might not be used is helpful. It’s a great place to stash your stuff, but also gives kids a break from this walking.  My 8 year old daughter has been caught riding in the stroller and even took a nap in it one park day when she was fighting a migraine. 

If physical mobility is a challenge for your family, Disney has access lines that avoid the stairs that the typical lines have.  Cast members are happy to assist you through these lines.  The park itself has very few stairs and where there are stairs, there are ramps close by.  Navigating the park is easy, but exhausting.

Weather- When planning your trip, be aware of the temperatures in Orlando.  The summer starts early here and the hot temps last longer than we might like.  Choosing to come to Disney in the cooler months can make a really enjoyable visit.  Summer rain storms are typical daily, so check the weather forecast for the day and plan to be inside a show or ride when storms are in the area.  Also get the outdoor rides out of the way before a storm rolls in.  With any luck and planning you may be able to stay dry and watch a great show! Be warned, if you go inside to avoid a storm and leave your stroller outside, it will get soaked!  Look for covered stroller parking in those instances.

Souvenirs- Disney will get you on the merchandise, It’s all really nice stuff, but it quickly adds up, especially if you multiply things by 3 like I have to for my 3 girls. Avoid waiting till everyone is exhausted to shop, it makes it challenging to make clear decisions.  Also, make a plan for what shopping will look like.  You can scope out your store and souvenir in advance to avoid lots of shopping time.  Each day we went to the parks, the kids wanted a Mickey balloon.  The day we went to Magic Kingdom, the balloons were everywhere and the kids got me to say yes, but I told them we didn’t want to carry them around all day.  They didn't forget and at the end of the night as we were leaving the park, I was standing in line for the balloons.  I had no idea how much the balloons cost, but I was committed.  Never have I spent so much money on balloons, but also never have I seen a balloon last over 2 weeks.  Make a plan with buying souvenirs and stick to it! This is always a tension point for my crew. 

Things to bring and not into the park- Stroller, battery operated fan, baby or hand wipes, extra clothes, sunscreen, hand sanitizer, refillable water bottles.  I don’t bring a purse to the park, but use a fanny pack.  It is easy to ride all the rides with the fanny pack secure around your waist, but a purse is more difficult and not safe to leave sitting in a waiting stroller.

Most of all, have fun.  Disney is a really magical fun place to make memories for the whole family.  

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

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.

"Status Quo"

The phrase “status quo” has popped up a few times recently in conversations and in things I have been reading, which got me thinking about my feelings regarding things being “status quo” or not.  Status quo is used to describe a normal state of affairs, not bad, not good, but mostly unchanging.  When people describe their life as in a state of status quo, it’s describing their normal.  Although this sense of normalcy has dramatically shifted over the past 12+months and settled into a new place and feels like globally is shifting once again.  This idea of things feeling like they may be in a state of status quo hit with a stinging reality as I reflected on my life.  What would the status quo look like for me? What would the simplicity of a day to day routine that felt very much normal be? What would it be like to not be navigating the ups and downs of crisis but just moving through the normalcy of life?  Maybe, status quo is not fantastic, but maybe it is not filled with as many curve balls as my life feels like it has. 

I have heard it said that Jesus came to disrupt the status quo.  I can see this in the way he gave most of his attention to people who were not regarded as important.  You see this further in his disruption of religious laws that became the focus of worship rather than God.  And who the Jews expected to be the messiah, was not Jesus.  They expected a powerful ruler, not a baby born in a manger.  I think the feeling like things are not status quo is ok.  I think navigating the change and up’s and down’s of life that don’t feel routine or normal are ok too.  It’s how we respond to these unsettling circumstances that are important.  It feels like this is what I signed up for, things not ever being normal as we serve and trust God more.  

As we continue to navigate life that feels disrupted by circumstances, family, children, jobs or joblessness and more here are a few big picture thoughts to come back to:

Let GOD be GOD- Many times I remind myself “You have faith in God for a reason, let Him be in this with you.”  We must remember who is in control ultimately and not try to sabotage what God is doing in us and through us.  Don’t let fear take away from the growing that God is doing in these times that feel upside down, but actually pull closer to God and ask him to show you more clearly the purpose. The familiar story from the Gospels of Matthew, Mark and Luke of when Jesus calms the storm is a good reminder of the vast power and control the Lord has over everything. 

Jesus  replied, “You of little faith, why are you so afraid?” Then he got up and rebuked the winds and the waves, and it was completely calm. The men were amazed and asked, “What kind of man is this? Even the winds and the waves obey him!” Matthew 8:26-27

Keep moving forward- The tendency to let fear to hold us in a state of indecision can be problematic.  Keeping momentum even when things are not what we had hoped is important.  Every morning before school, my girls pick out a mantra from a list we heard about from Big Life Kids.  Many mornings these simple statements the girls pick for themselves stick in my mind as I go through the day. Two common statements chosen are “ My imperfect action is better than no action at all” and “I have grit and I won’t quit.”.  These simple statements remind all of us to move forward through the hard and continue on.  Building a mindset of positive, forward motion through the things that don’t feel normal is healthy.  

The Lord encourages us as he encouraged Joshua to keep moving forward and lead the Israelites into the promised land - “Be strong and courageous, do not lose hope, for the Lord your God is with you.”Joshua 1:9

Be generous-  The idea of generosity can be molded into many different domains of our time, resources, words, etc, but in the end- the act of giving ends up returning some vital things when we are in a season of chaos.  A few of the benefits of generosity noted in the Pyshalive article are that generosity improves our sense of purpose, deepens relationships and connections, and reduces stress.  All of these benefits are what we are looking for when we are seeking a sense of status quo that we can not find.  In these circumstances where we feel like the bottom is falling out we must remember where our heart is rooted.  

 “Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal.  But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal.  For where your treasure is, there your heart will be also. Matthew 6:19-21

It feels like most days my family is living our life on the edge and I don’t think we are that unusual in those feelings.  We have weathered unexpected changes, and detours and sit in the present place trying to put the pieces in order to make sense looking ahead.  Looking behind us feels like a trail of wreckage that we call our life.  The only thing keeping us together is that we are graciously provided what we need for today. When I feel like my life is moving towards chaos, I remind myself of what is true and practice the things that bring me back to my root system of our loving God.

Written by Naomie Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

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.

"Write Everything Down"

“Write everything down,” my adult daughter said.

I stared at her, equally amazed by her wisdom and my epic fail to practice what I’ve been preaching for more than a decade.

When I spoke at special needs and disability conferences–pre-pandemic of course–parents would ask how to be effective advocates for their kids. My top 3 tidbits of advice were always:

1. Let people in.

2. Don’t take no for an answer.

3. Write everything down.

How had I forgotten my own best advice this spring while advocating on my mother’s behalf? I’m blaming my oversight partly on the pandemic (it’s about time it was good for something), and partly on my inability to see that effective special needs advocacy practices are equally effective while advocating for the elderly.

I tore myself away from staring in amazement at my daughter–when did she become so wise?– and went into my office where I began to write everything down as she had advised. That was about 2 weeks after Mom’s health issues began, and the timeline of events was still clear in my mind. At the time this post was written, the timeline had stretched to 4 weeks and counting. If my daughter hadn’t said to write everything down when she did, the increasing number of events would have become muddled and my recording of them inaccurate. Not good.

Because effective special needs advocacy practices can be applied effectively during elder care advocacy, and vice versa, let’s see how the other two tidbits of advice can work for both populations.

1. Let people in.

Once I wrote everything down, I sent copies of the document to my 2 siblings. I add to it a couple times a week and send the updated document to them again. Why? First, it eliminates the need to send lengthy texts to keep them in the loop. Second, they send me feedback about what they believe next steps should be. Today’s update led to my brother and I scheduling a meeting we’ll attend together on Mom’s behalf. Our sister, who lives in a different state, suggested language to use during the meeting. By letting them in, our advocacy is united and more powerful. We do our loved ones, whatever their ages, a great service when letting people leads to more effective advocacy.

2. Don’t take no for an answer.

As a lifelong rule follower and people pleaser, this one’s hard for me. I trust and respect people in authority. I don’t want to question them. If I was the only person involved, I probably wouldn’t question them. But this isn’t about me, just like your advocacy on behalf of your kids. It’s about them, their care, their quality of life, and respecting their wishes. So when I detect inaccuracies or hear something stated from an incomplete perspective, I push back. I provide my version of events and share my documentation. Which leads back to where this post started.

3. Write everything down.

Mom will need my sibling and I to be her voice, her advocates, for the rest of her life. Depending on your children’s special needs or disability, you will be their voices and their advocates, at least for a time. By writing everything down we are equipping ourselves to speak well on their behalf, for however long our loved ones require our advocacy.

I’ve added a final tidbit of advice to my list, though it may not work for you. Would you like to know what it is? Listen to your daughter. She’s one wise woman!

Written by Jolene Philo

Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She's also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

The Shell Of Many Colors

“He is not here, for he has risen, as he said. Come, see the place where he lay.”

(Matt., 28:6, ESV).

This past Good Friday I had my son with me for an overnight visit. Being a now divorced dad, there are many challenges that naturally come up, but one very important one is how our autistic son will be supported in his Christian faith. For my part, I have sought out a new church with a special needs ministry that we could attend together, try to keep up with Bible reading when we can, and of course celebrate the holidays.

For a change, I decided to attempt coloring Easter eggs with him on my own for the first time. It might not seem to be any big deal to parents of typical kids, but in our house doing something as trivial as coloring easter eggs can be a big job. While I know my son understands what coloring Easter eggs is over all of these years, he still struggles with the motor control to independently control and dip the eggs, and of course he deals with sensory issues which encourage him to want to stick his hands in and splash the water. But I still felt it was an important bonding activity for the two of us, so I purchased the eggs and the kit, set up everything as orderly and neatly as I could, and we endeavored to color some eggs. Since he is non-verbal, I also set up his Ipad with his communication app next to the setup, so that he could tell me what colors he wanted to use. When it was all ready and I called him over to the table, I of course took the obligatory picture of him pointing to the colors that he liked best.

An activity like this could truthfully be pretty quick, as I just ask my son the colors he likes, assist him in dipping them into the coloring, and lay them down to dry, simple. But as people of faith, I want him to know that this is about more than just doing something fun. The eggs represent rebirth and new life, and more specifically the act of Jesus coming out of the tomb on Resurrection Sunday. I paused to reflect though on what this  meant for me and my son doing this together, as that visual of emerging from the egg had bigger connotations in that moment. I thought about this hopefully being the beginning of the end of the covid pandemic, and our whole population coming out of quarantine. I also thought about my son’s own condition as a non verbal child, and how him being able to use his device to communicate his wants was also a way of him coming out of the shell of his speech impediment. 

Watching the eggs dry, I gazed as the wet colors settled on the shells, forming their intricate swirls and patterns, contemplating their uniqueness. Just like each one of those eggs, they are unique and beautiful in their own way, manifesting the colors of God’s love, wrapping around the hardened shells of doubt and fear. It is a wonderful reminder that everything can change in the blink of an eye, as soon the shells will break, and the tomb will open, revealing the glory that was hidden inside.

Written by John Felageller

Follow John on his website: www.johnfelageller.com

Which Christian Parenting Resources are MOST helpful?

In the last blog post, You’re Grounded!!! I alluded to how the first few years of Jonathan and my parenting journey and how we were doing discipline was NOT working. We were following the best of the parenting classes from Bible school and church and books recommended to us and getting a kid who became angrier and angrier. We knew something HAD to change…and it was us and how we were parenting, not our kid.

Today, I share with you:

1. Resources we have read and tried

2. Resources that dramatically changed our and our kids’ lives for the better

Disclaimer: our kids are currently teenagers. We are in the midst of this parenting journey. We are learning too. Currently, our teenagers are delightful. They are a joy and pleasure to be around (most of the time!). We do not fit the stereotypical picture of regular teenage/parent conflict. I’m loving this age and stage and hope this type of relationship continues. However, we don’t know how our kids will do in adulthood or what choices they’ll make once there or at any point on their way there. We pray for wisdom as we continue on this journey.

The following resources are loosely listed from least helpful to most helpful for our family. We’ve read and studied more, but these are the ones that came to mind.

Resources we read, studied, &/or applied early in our parenting journey that we may have gleaned some from, but didn’t get us where we wanted to be in our parenting:

1.     Don’t Make Me Count to Three by Ginger Hubbard

2.     Growing Kids God’s Way

3.     Dr. James Dobson’s books

4.     Child Training Tips by Reb Bradley

5.     Love & Logic by Jim Fay & Charles Fay

6.     Give Them Grace by Elyse Fitzpatrick

7.     Shepherding A Child’s Heart (the anger management/training/maturity ladder was helpful) by Ted Tripp

Resource that we think are excellent, the last 2 have heavily influenced our parenting:

1.     Parenting by Paul David Tripp

2.     How to REALLY love Your Child by Ross Campbell

3.     Sally Clarkson’s books (there’s more I need to read!!!) & podcast

4.     Sharing Love Abundantly In Special Needs Families by Gary Chapman & Jolene Philo

THE #1 most helpful and robust parenting tool we have found:

As a side note, you can listen to our podcast interview with Jim and Lynne here. What resources have been helpful to you in your parenting journey?

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

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Hope Anew is an Amazon Affiliate and as such earns income from the affiliate links listed above.

The Parenting "Long Game"

PARENTING can be a loaded word- it’s personal and relational and it comes in long stages.  There is joy mixed with fatigue and confusion.  It seems like, as a parent, we are often experiencing the polar ends of emotions.  Moments of hope are fleeting and followed by despair.  We are on mountain tops and sinking into the valleys in a matter of minutes.  You can read many parenting books and blogs, listen to podcasts and talk to professionals, as well as trusted friends and still feel like you are in the dark.  Sometimes we end up more overwhelmed than before we started looking for answers.  All this messiness is because parenting is personal and our kids are each unique. Additionally we bring our own mixed up parenting perspectives into the relationship to add to the emotional confusion.  Even within a family unit, parenting multiple children can look very different.  

On top of all of that, we take the outcome very personally.  We place the value of our parenting in the goodness of our children.  Am I an effective parent because my kids made it through dinner in a restaurant without making a scene?  Did my children exhibit kind, respectful behavior at a friend's house because I taught them all the polite things? And on the negative side of things; is my child going to struggle forever because I am failing in parenting?   The idea that our worth as a parent is a result of their good or bad behavior is FALSE.  The two ideas are not connected.  The true source, of both our worth and our goodness, comes from the Father, the same is true for our children. 

I have 3 girls, ages 8, 6 and 3, and parenting each of them the same way would be ineffective and unfair.  Parenting becomes personal because each child is unique. We have done a lot of ground work to establish the rules and values of our family.  Although the house rules and family values are the same, the way they have learned and experienced this varied.  We have gone through a lot of hard work to get here and now the lessons are learned through them trying out what we have taught them and feeling the consequences of their actions and independence. 

Take a look at the long game of being a parent.  The goal is not that they put their toys away, or tidy up their room, or have impeccable table manners.  The goal is that they have self-respect, compassion towards others, take responsibility  and can positively contribute to their family, community and the world through their own unique giftings. 

This long game perspective makes parenting highly relational. 

I felt like my family had a season where we were losing our relationships for the rules.  There was very little joy or fun and it was a battle over who was more persistent. The result was negative and loss of the relational ground we needed to be building with our daughters. Slowly that stage of parenting has shifted as well as our perspectives and their needs. 

What feels like we are in a hard phase that will never end; slowly, we are actually moving to a new place almost overnight and there is light.  I have appreciated the 4 phases of parenting outlined as Commander, Coach, Counselor and Consultant by “Focus on the Family”.  I can recognize that when it felt like a battle ground in our house, we were likely in the middle of the commander stage with 3 young kids. And now we have progressed to some coaching and some commanding as the kids have aged.  Don’t lose the relationship over the rules, don’t linger too long in the a stage, push yourself and your child to stretch when the time is right.  Don’t be afraid to return there when needed. Always remembering, the character and care of our heavenly father is being extended to us in these stages as we navigate life as well.  

After months of being “off” my parenting game due to moving, COVID, virtual school and so many other disruptions I feel like I have had to go back to the “commander” stage more than I would like.  I try to balance this with intentional time to build the relationship individually with each of my kids.  Today, we had a longer day of chores, but focused on the relationship as I took two daughters to get their nails done and later made a secret dessert for the family with another.  I feel more effective as a parent when I have made these relational efforts with my kids.  And I feel more effective as a parent when I make relational efforts with God. 

Invite God into the struggles and joys of parenting by prayer and worship.  He wants to share in this process, as He is a supportive, loving, present father.  

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

You're Grounded!!!

Let’s talk parenting!

 Parenting is one of the greatest joys and greatest challenges all at the same time. Overwhelming joy and deepest grief. This month, we’re looking at something we do daily as a part of parenting…DISCIPLINE. 

We want so much for our kids. We love them with everything we are and have, and yet so often our relationships with them are characterized by frustration, tension, and conflict. When we correct them, what we really want to see is heart change, but most often after a discipline issue parent’s feel they’ve missed the mark or that their kid just hard-hearted and resistant.

But all is NOT lost – there is hope!

In the Hope Anew Online Community during the month of April the theme has been parenting. There are 4 short videos posted there on the subject:

Video 1 – I share some philosophies and approaches Jonathan and I have come to embrace in our parenting after some trial and error and weeding through MANY parenting books & approaches and even counseling courses. I share some reviews of and links to those in the next blog post.

 I also share some things we do NOT do or STOPPED doing (because they were counterproductive, but the most well-known Chrisitan parenting advice says that’s exactly how to parent). And, I share some things we DO do and have found to be beneficial that’s rarely taught.  

Videos 2 & 3 – We take the last part of video 1 (what TO do) to the next level as we look at the book Discipline That Connects with Your Child’s Heart by Jim & Lynne Jackson 

Video 4 – Is about the power of vision-casting and blessing in our kids’ lives.

If you are finding that parenting is an area that leaves you hopeless, exasperated, or isn’t going how you hoped it would (beyond your child having extra challenges), hop on over to the Online Community and take a look at the videos and see what your next step could be in disciplining and discipling your kiddos!

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

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.

R.E.S.T.

Being a parent often seems like there is never enough time, and often we shortchange ourselves on rest to compensate. Sometimes I thrive on all the hustle and bustle, and other times I feel as though I’m on a speeding train I’d love to make an immediate departure from. The worst part is that sometimes I’m unable to distinguish between the two, propelling me into confusion.  My wife Naomi knows too well, but after I’ve given my best to work and the kids, there isn’t much left for her.  That isn’t fair, or honoring our sacred relationship.  What am I robbing myself of when I deprive myself of rest in all its forms?

Rest.  This is an elusive and mystical word to a parent of young kids, which often makes me think;  “one day I’ll have time for that”  or  “I’ll rest when I’m dead.”  Neither of these views help me give my best to my family.  But I often fall into the trap of pushing myself, keeping busy and just getting the things done that Dad’s need to do.  Do I wear it as a badge of honor?  Possibly, and that is not healthy nor productive. That view is selfish and does nothing to glorify God.  When I can’t be my true (and rested) self, I am robbing the world of the joy God has placed in my heart.  Even if you're SuperMom or SuperDad, be honest, you can’t fake it but for so long.

But I got responsibilities man! Your quick schemes won’t work for me! Yes, it’s a challenge to find rest, or is it?  I think it’s important to remember that Grace through Jesus comes through Him, not through our deeds.  Deeds keep us busy, and we often give too much credit to our works. We spiral into an endless cycle of “doing” in order to prove our worth, and this isn’t just a spiritually manifested issue. 

I can’t give you a definition of what rest looks like, because everyone’s needs are different. But lately I’ve been thinking of an acronym that helps me, and may help you determine how you can weave rest into your schedule, however brief.  Here are my guidelines for R.E.S.T.

Recurring - Make it intentional, and on a schedule that works for you.  Even if it’s locking yourself in the bathroom to escape for 5 minutes (and yes, we have all done it).  Don’t let those little fingers under the door distract you, they will surely survive, as their only aim at that moment is to pull your attention. Setting yourself  boundaries will help you carve out some time.  Isn’t it strange how boundaries can make us more free?  Understanding this has always been a challenge, because as the parent you are always the enforcer.  In my daily rhythm, I try to catch myself “scrolling” and jolt myself into stealing my time back. We all find ourselves scrolling social media, so this is the perfect time to reclaim that few minutes as your own.  I also find that if I wake up before my kids, it’s hard for them to interrupt me during that time.  It’s the absolutely most perfect time of the day, since I tend to be a morning person.

Enjoy - The act of resting should recharge you, which means it should be a departure from your normal routine.  Shock your system by doing something you enjoy, which is something you have probably deprived yourself of as a busy parent.  You will be surprised how even a small burst will recharge your battery. This is a deeply personal choice, dig deep for something God has uniquely placed in your heart. 

Solitary - I’m a social person, so this one is sometimes a struggle for me.  But I find with the constant draw for my attention by my kids, the best rest for me in my current phase of life is often in solitude. It gives me a chance to reflect, which leads to the last and most important part.

Thankful - When you take time away, always do so with a thankful attitude.  You shouldn’t shame yourself while you are taking time away, that will always be self defeating.  The idea of rest (in the form of a sabbath) is deeply Biblical. You can choose to explore any of the scriptures around this topic, but I always fall back on the creation story. If God decided to take a rest, then it’s perfectly fine for you to do so as well! 

As you go about your day, I challenge you to implement these ideas.  Did you notice that it costs nothing?  And that it has no constraints on what you should do, or how long it should take?  You may need to enlist some help for you to carve out a small block of time, this is also perfectly acceptable. It is a process, just make sure that you protect what works for you. Take heart in this, and work on giving a slightly better version of yourself to the world. We are called to let our light shine, so do so with a restful heart.  

Written by Jesse Brubaker

Adventures In Faith

What feels like a very long time ago, I was in a unique situation.  It was an opportunity for me to be used by God as a means to bring peace and comfort to a whole family without me even realizing it.  My husband and I were traveling to visit my grandparents in Florida. We were leaving from our small Richmond airport.  We always look around for people we may know or recognize even when in larger airports, because you never know who else is on the go.  I did not recognize anyone around our terminal, but recognized a very familiar sound.  I turned to my husband and said, “That’s J!”.  He was surprised that I could recognize a child by the sounds and his voice in this busy airport. 

I spotted them in the terminal seating area and went over to introduce myself. I taught at this boy’s small private school for kids with autism in another classroom. The whole family was traveling to Florida for an experimental trial and then of course Disney.  They were nervous and so was J.  I could tell by the sounds he was making that he was teetering on the edge of a meltdown in the middle of the airport.  I feared what a small space of the airplane would feel like for him.  I told the family that if they needed any help while on the plane to come find me and I gave them my seat/row number.  

We all boarded the plane, J and his family were close to the front on the plane, while my husband and I were towards the back.  Not long after taking off, the seatbelt light clicked off and almost immediately J’s sister was at my row.  Out of breath, she quickly said, “Were you serious about helping us?”  I kindly said “Yes” and left my husband to see how I could be of any support to this family.  When I got to J’s row, his mom was sitting next to him trying to calm him down.  The look of panic was replaced with relief when she saw me standing there willing to help.  She simply said “I just don’t know what to do.”  I told her it was totally fine and she could sit with my husband if she wanted to during the flight.  She passed over the reins of her intricate boy and bag of goldfish and breathed a timid breath as she walked back to my old seat.  

J and I settled in for an exciting 2 hour ride to the Orlando airport.  I used lots of distraction techniques to help him stay seated in the small confines of his seat.  I helped him use the tiny bathroom with the VERY loud toilet and wash his hands in a sink unlike any he had used before.  We ordered drinks and snacks and talked about what it was like to be in the clouds.  There were moments when I thought I was going to have a bad situation on my hands, and then we recovered into a safe space.  It really tested my ability to remain calm and loving to him in this environment packed with people.  We landed in Florida and got off the plane and we all reunited in the terminal space, me with my husband and J with his family.  They asked when my return flight was so we could travel together on the way back.  It felt so good to be able to care for this family during the stress of traveling.  It is a plane ride I will never forget.  

I am so proud of this family’s bravery to ask for help.  There are so many times I am hesitant to ask for help because I don’t want my own weakness exposed, especially when it comes to my parenting. 2 Corinthians 12:19 says exactly this- "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. “

I honor this family's ability to recognize their needs and their limits while still stepping out of their comfort zone to travel and stretch themselves. 

Psalm 16:5-6 says, “Lord, you alone are my portion and my cup,  you make my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance.” God has given us limits for our good and we must recognize and honor them. 

This family trusted God would provide and they trusted me, a complete stranger.  This trust allowed them to widen the circle of care not only for their son, but for their whole family.  They kept their eyes open to what God’s provision would look like and acted when they needed. The family stuck together and supported each other in this challenging circumstance.  Rather than blaming or feeling guilty, they celebrated the fact they could receive help.  

Now as a mother, traveling feels as exhausting as it must have for this family…it feels scary too.  Will I be able to provide for the needs of my family when we step away from our systems, structure, predictability and comforts of our home?  The answer is unfortunately “no”, I will not be able to provide and protect as I typically do, but God will. Not only that, leaving the comfort zone and relying on God brings growth, family unity and adventure. 

So, plan for God to step in where you know you will not be enough and be ready when He brings unlikely answers to your needs.

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

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.

The Hour

There has always been a time of day in which things seem to be extra hard.  The volume on the emotions are turned up high. It comes as predictably as clockwork each day.  As much as I try to prepare myself for this time, or just embrace it, I can't change the course of that time of day.  It’s in these moments of the day that I begin to question my every ability to do the simple, most innate things for myself and my family.  The morning after a particularly challenging evening, I found myself in the Walmart parking lot writing down the words of this poem.

THE HOUR

5:00- World is collapsing in on itself.

Can I multiply myself to cover all the needs? 

Put out the fires?

5:03-The worst parts of all of us

are sneaking out.

Quickly colliding.

5:13- Need to cook dinner, 

Recipe is too complicated.

Just can’t.

I think I forgot to buy the ingredients, or were they eaten?

I yell.

Get it together.

5:18-Second grade math homework.

The chaos clouds her mind.

She makes the same mistakes.

We do this everyday.

Why does it continue like this?

She’s refusing.

I’m at a loss, 

Be patient.

There’s not enough of me,

I’m withering inside.

Why can I not calm this part of the day?

5:23- Frustration welling up.

They are all fighting.

Now crying.

Lord, surround us.

Don’t even mention the needs of the dog.

5:30- Husband should be home,

No, he said he was working late.

Can’t do this.

I need to change the course we are on.

5:37- Don’t think this will help but- “Pandora play hymns”.

Sing even though you don’t know the words.

Sing even though it doesn't feel like you deserve this.

Dinner is leftovers.

It’s fine.

Turn up the volume on the music.

5:45 -Give someone a hug

Apologize for losing my patience, 

losing my mind.

5:50- Homework finished, incredibly.

Please set the table. 

I still need help. 

We can do this together better.

6:00- Daughter says the dinner prayer.

“Thank you God for my family, 

Did she hear me yelling?

For this delicious meal, 

It’s leftovers from last night!

My friends.

Yes, we need to feel accepted.

Keep us safe and healthy.

I can do this, we made it.

Amen.”

Hope.

Coincidence, I think not, that this poem was scratched down on the back of a piece of paper outlining St. Ignatius Loyola's Examen.  It is a method of prayerfully looking at your day and seeking to find God in it.  So in the company of the Holy Spirit we are invited to become aware of God’s presence and look back on the events of our day with gratitude. The mess of happy, confusing, fun, disappointing, ugly, beautiful moments that made up the day.  We are encouraged to become aware of God’s presence and movement in our emotions.  This is an opportunity for God to point out where we may have fallen short.  We then pick one moment of the day and pray through it with the Holy Spirit.  This could be a positive moment or negative moment, monumental or insignificant.  Allow the prayer to arise from your heart and push you to praise, repent, or ask for guidance. And finally, look forward to tomorrow. Ask God to go before you in tomorrow’s challenges and be a light.  Be aware of your feelings and offer them to God and pray for hope.  

The Lord’s love surrounds those who trust him.  -Psalm 32:10

Be joyful because you have hope.  Be patient when trouble comes.  Pray at all times. -Romans 12:12

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

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.

2 Mental Health Red Flags for Caregiving Parents

2 mental health red flags for caregiving parents? Are you kidding me? I’m waving at least a dozen red flags every day!

That would have been my reaction to the title of this post when I was in the thick of caring for a medically-fragile kid. In fact, that would have been my reaction as recently as a month ago. But I had a lightbulb moment between then and now.

The lightbulb moment came while I facilitated a class for teachers about post-traumatic stress disorder (PTSD) in kids. We were discussing childhood symptoms, also known as behaviors, displayed by traumatized children. The class members wanted to know what kinds of behaviors are indicators that the trauma has evolved into PTSD.

“It’s not so much the kind of behavior,” I explained, “because most kids display these kinds behaviors at one time or another. “Red flag indicators for me are the intensity and duration of the behavior. An example would be what happens after telling 2-year-olds they can’t have a cookie. More than likely, a 2-year-old will throw a tantrum. However, 2-year-olds living with unresolved trauma and PTSD will pitch magnificent fits that are long and loud. That’s intensity.

Similar tantrums continue to occur whenever these 2-year-olds are denied anything long after the child should have moved past the terrible 2s. That’s duration.”

The words had barely come out of my mouth before the lightbulb turned on: Intensity and duration of behaviors can be 2 mental health red flags for caregiving parents, too.

I mean, let’s face it. Parents raising kids with special needs and disabilities face plenty of attacks on their mental health, including traumatic stress. Such as the stress of overwhelming, unrelenting caregiving demands. The trauma of sending a child off to surgery or hearing the heart monitor flatline. The stress of trying to manage unmanageable behaviors. The trauma of a receiving a difficult diagnosis.

Stressed and traumatized parents who want to be proactive about their mental health can do so by assessing the intensity and duration of their own reactions in certain situations.

For example, it’s normal for parents of kids who were hospitalized to avoid visiting hospitalized family and friends for a while. But it’s not normal if that parent has a racing heartbeat or sweaty palms while driving by a hospital. That’s intensity. It’s also not normal for that reaction to continue years after a child’s final hospital stay. That’s duration.

It’s normal for parents to get tired of taking children with autism to weekly behavioral therapy. But it’s not normal to be utterly exhausted after therapy to the extent that the parent wants to go to bed and pull the covers over their heads once the appointment is over. That’s intensity. It’s also not normal for that level of exhaustion to persist for several months or longer. That’s duration.

Here’s one more. If you have received negative news regarding your child via the phone–it could a difficult diagnosis, behavior or academic concerns from school, or even that an in-home care provider can’t make it again–you may experience a sense of dread when your phone rings. That’s normal. But dealing with the dread by refusing to answer the phone (intensity) for a week or a month or more (duration) is not.

By applying these 2 mental health red flags for caregiving parents in your own life, you can be proactive about your personal health. If you decide to seek a therapist, this post about how to find a trauma therapist can help you locate a mental health care professional where you live.

Written by Jolene Philo

Jolene Philo is the mother of a son born with life-threatening special needs and the daughter of a father severely affected by multiple sclerosis. In her 25 years as an educator, she integrated children with special needs into her classroom. She’s written 5 books about caregiving, special needs parenting, and childhood PTSD. She recently co-authored a book with Dr. Gary Chapman about how parents of kids with special needs can use the 5 love languages in their families.

Jolene speaks at conferences around the country and internationally, facilitates classes about childhood trauma for educators, and trains special needs ministry leaders and volunteers. She blogs at www.DifferentDream.com. She and her husband live in Iowa.

Our Guide

I was sifting through memories the last few months and came across a picture of me that unknowingly marked a significant point in my life.  The picture is of me surrounded by a bunch of Honduran kids with a huge smile on my face.  It was taken somewhere between 2004 and 2007 at an orphanage in Lapaz, Honduras, off a dirt road with dogs running around and many more kids laughing and playing elsewhere. 

This was my first mission trip. I had no idea what I was doing or the real reason for me being there.  The kids surrounding me in the picture knew Jesus way better than I did and I did not have a clear job on the mission trip other than to play and connect with these kids.  This picture was stored away and became memories that were patched together as my life went on.  It was a fun trip, but it wasn’t easy.  I know if I had a greater understanding of what the trip was for and why we were doing a mission I would have experienced the trip in a totally different way, or maybe chosen to not go at all.  

Looking back on this seed planted for missions I can faintly see how there was work being done all along to get me where I am in this season. The “me” in the picture thought being a pediatrician would be a great career and this trip might be an interesting thing to talk about in a college essay or put on a resume.  The real story being written was that God would expand my love for children in need to advocacy and education for kids with severe disabilities.  The “me” in the picture could not understand why anyone would need a savior or faith in God, let alone a clue who Jesus was.  The story God was writing was He would come for me too as I needed a savior more than I could have ever understood. The “me” in the picture thought this trip was a fun adventure, and the story that God was writing was that I would have no idea how amazing an adventure God was planning for me.  

A lot has happened since that picture, but I feel like saying “yes” to Jesus put my life in acceleration. 

So many things have changed, shifted, fallen into place or made sense since saying yes.  The me in that picture is not so different from me now, but more focused.  Since that mission trip to Honduras, I got my masters in special education rather than becoming a doctor.  I am now covered in kids that look like me in pictures and we are heading to the mission field with more focus and direction from the Lord and I could ever imagine.  God has used my background of special education to get me to come back to him and also immediately put me to work bringing His children back home too.  I have enriched my Jewish roots and heritage with a clearer picture of who God is and who I am in the love of Christ.  God has shown me a place to care and love others as He did.  

The smile on my face in that picture is just as big now. When I think about how my mission experience started as a Jewish teen at a honduran orphanage and now I am preparing, with my husband and 3 kids, to launch to France to serve at a camp.  I can not fully appreciate or understand His preparation of my heart in the process.  My heart is so different since that picture, no longer am I thinking about what would look good on a resume, but rather how can I bring more people to know the depth of this love and acceptance.  It shouldn’t surprise me though, God is unchanging and knows all these things.  I am the one who is changing as I experience and know Him more deeply.  I think about this memory from God’s perspective, as he sees the whole breath of my life at once. There was no coincidence about this journey, nothing surprising to Him and whether I realize it or not, He will guide me.  The verses from the end of Psalm 48:14 feels so comforting in thinking about the journey that has been completed and the road ahead of all of us in our walk: “For this God is our God for ever and ever; he will be our guide even to the end.” 

Wherever God has placed us, whether in our job, role as a parent, ministry role, etc, God has worked ahead of us and in us in preparation.  We are in practice and getting prepared long before we realize it.

I see more clearly the truth of the verses from Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose…”  I know that God is guiding me to something good, not easy, but good, and that’s something I can get excited about and put my faith in.  Praise God for this first mission trip and the seed that it planted in my heart.  Praise God that He has chosen to continue to make his plan clear for me and chosen me as bold and courageous enough to do as he has called.  Praise God that He is with me now, in the past and every day to come. 

Written by Naomi Brubaker

Naomi is a mom of 3 girls ages 7, 5, and 2.  Her oldest daughter is diagnosed with ADHD and a visual processing disorder.  Her family lives in Richmond Virginia where Naomi leads the special needs ministry at their church.  Her background in special education and ability to understand parents from her experiences with her daughter give her a unique perspective in her role at the church.  Naomi loves to run, sew and take walks with her husband with any free time she has. 

One Simple Question That Can Change Your Life…and the lives of those around you!

Last week I shared that my theme word for 2021 is thankful and to help me toward that goal, I’m listing 3 things I’m thankful for each day. That is one step. But it’s not just a “list 3 things and move on with the day”, checkmark, goal accomplished. Done.

No, in making thankfulness a habit and cultivating a heart attitude of gratitude it is my goal that the act of starting my day with thoughts of thankfulness will then help thankfulness carry on into my day with choosing thankfulness in situations that would otherwise cause irritation, annoyance, depression, discontent, or hopelessness.

Our family is currently living in an RV and touring the country for 10 months while we work and school fulltime. Yes, it’s pretty incredible. But it also means we are sharing one bathroom. One morning last week, I needed to do my hair and plugged in the curling iron to warm, but since my kids hadn’t gotten up and been through the bathroom yet I thought I’d give them a chance before I started on my hair. I have a lot of hair and it’s a 30-minute process. I got them moving and started working on breakfast in the kitchen while waiting for them to quickly use the restroom and vacate it.

 The next thing I knew, one of my sons was showering. He doesn’t normally shower in the morning and I hadn’t expected or anticipated that. He’s also not quick about showing, so my day and planned schedule was now delayed by 30 minutes. My immediate reaction was irritation, annoyance, and criticalness about his thoughtlessness.

 After ascertaining that he had turned off my curling iron and the RV was not about to catch fire from his setting clothes on a hot iron, I recognized my negative emotional state and direction of my thoughts. I asked myself, “What can I be thankful for in this situation?” Immediately I thought of how thankful I am that I have a son who desires to be clean and takes responsibility for his personal cleanliness AND that I don’t have to push, fight, or cajole him into it! What a blessing he is! How proud I am of him!

One simple question to myself and wow, what a change in thoughts and emotions! And, what a different mom that kid had when he got out of the bathroom than if I hadn’t asked myself that question. I know I want to be the second mom and not the first mom on a regular basis and that’s the mom and wife my family wants too. It’s also the daughter my Father will be more pleased with because that’s who He has designed and enabled me to be. Yet, it all came from a simple question and changing my focus.

Who do you want to be? What characteristics do you want to cultivate in your life? Is thankfulness a challenge for you like it is for me? If you haven’t already, we’d love to have you join the Hope Anew Online Community and take part in the January Thankfulness Challenge!

Sarah McGuire  is the Mom of two boys and co-founder of Hope Anew, a nonprofit that guides parents to Christ-centered hope and healing. You can follow Hope Anew on Facebook here. You can also check out Hope Anew’s Online Community here!

Due to COVID-19, Hope Anew is waiving all membership fees for the community!

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.