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. 

The Angels of Our Path

It seems from the moment we realized we had a magnificently special child, the angels were there.  At the time, we may not have recognized them as such, but I can assure you that they were there.  God sent people smack dab into our lives, seemingly out of nowhere, that would make a significant impact on our experience as a special needs family.  If you are just starting this journey, keep your eyes open for them.  They are there.  God is guiding you through their care and knowledge and acceptance.  

As clearly as I can see those people now, there were moments when I was so distraught over the people that I had thought would be there for us and weren’t, that I almost missed them.  There are definitely people that don’t understand how to shepherd you through this type of grief and confusion and the figuring it out time that comes with learning the ropes of special needs parenting.   I think it’s okay to feel disappointment about that, but to understand that we are all just human.  Our friends are human, our family members are human and with that comes differences in how we handle things.  Even if people we expect to walk with us don’t, it is okay.  God sends who we need when we need them.  The number of angels that have been sent our way far out measures any disappointments we felt along the way.  

Each heaven-sent guide, led to the next and the next and the next.  This chain of help and healing and connection is remarkable to trace back.  People speak of “word of mouth” when asked questions like, “How did you locate your Occupational Therapist?” or “ What led you to that preschool?”.  I don’t think of it as “word of mouth”, but as God’s voice leading us in the right direction.  I often pray for God to lead me.  I promise him that I am listening.  If he will lead me, I will follow.  

I have followed these little nudges and as a result, we have found our way thus far.  

The therapist that “everyone loves” somehow had an opening for us in her very full schedule.  She became our first guide.  She taught me about what my son was struggling with, she led me to appropriate care providers for him, she coached me on what he needed, and she gave a name to some of the things we didn’t yet understand about him.  To this day, we feel her impact in my son's life every day.  She led us, also, to the next of our angels here on earth.  My son’s first preschool teacher. Without her love and care, my son might have never gotten the chance to experience school.  She held his hand and accepted his differences while she championed his strengths.  The bond he still shares with her is like no one else in his life.  

Through a course of wild coincidences, our next angel flew in.  She gave my son the chance to learn about the Lord.  As a special needs family, we struggled to find a church that was a fit for us.  This woman gave us a place.  She runs the special needs ministry at a very loved church in our town, and when we met her we found our church home.  Her guidance and friendship and loving care of our son and other children has allowed for acceptance and inclusion to grow in our community.  My son, thanks to her, was able to participate alongside his peers and take part in all of the childhood church experiences that other kids typically get to enjoy.  She led us, also, to another of the angels in our life.  This next angel came into our lives as a suggested summer camp aide for our son.  She was just finishing high school, and she spent the summer with our boy.  To this day, she is one of the only people I fully trust to leave him with.   She connected with him instantly and learned him and loved him. It takes time spent together to really know and bond with a child, and this teenager invested more into my son than I could have ever dreamed.  

The dear friends and family members that have tucked in with us and been a part of our day-to-day life are also a part of this squad sent from God.  They’ve listened and comforted and been strong for me when I couldn’t be.  Then they listened some more. They’ve withheld judgement and just been there. In it. This group just seems to grow as time passes.  Our lives were blessed with even more angels as our son entered elementary school, before we decided to homeschool.  The relationships he formed there have continued on well after our leaving.   Buddies from church, hair stylists, and the list goes on, one after the next, have become interwoven into our story and our hearts. These angels and the many more we’ve met along the way, are our people.  Our team.  Whether we still see them everyday or not, they remain with us.  They are forever family to us, and our gratitude to them and to God for sending them is immeasurable.  

As you travel this journey, look for the repeated names, the coincidental meetings, and know that there are no accidents.  Keep your eyes and ears open for the angels sent your way.  You will find them. 

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

Spreading His Wings

On Sunday we lost Ben.

He had filled his backpack full of things he needed for camp and headed out the door on foot to try to make it to Rockbridge Camp. Out of all the things he has lost because of quarantine, this has been the hardest loss. 

Ben loves Rockbridge because it’s an incredible camp for students with disabilities. We found this camp through YoungLife’s Capernaum ministry. It’s an awesome ministry that has really blessed Ben and our family.

When Ben left that day, I am not sure what he was actually thinking. Was he really trying to get to camp by foot? Or, was he just dying to go somewhere alone? I know what I was thinking, and all of the scenarios in my head weren’t good. In the first 10 minutes I had already pictured him kidnapped and I was scared!

After we realized he was gone, we all headed out on a hunt for him. His brother and Dad were on bikes and I was in the car. Despite our effort to fan out and cover a wide area, he somehow managed to dodge all of us!

Thankfully we finally found him 2 neighborhoods away! Looking back, now what seemed like an eternity really wasn’t that long. He was probably only lost for 20-30 minutes. But, it felt much longer.

While he had a bag packed “for camp”, I think there was more to his escape. Ben is 18 and just like any teen he wants to be independent. That’s something we all want, right? Many kids look forward to being able to walk to a friend’s house alone. Or, the day they get a license and can drive off and be independent. Or, the real independence of living alone. 

And then there it is again —the heart pain. I have felt these pains before. The pain of wanting him to have something that I can’t always give him. Once again, having to let go of what I want and see what I have been given. This has been my heartache my entire life, and I think it will forever be there. You see, I don’t know if I can ever give him the independence he wants. Of course he can eventually take a walk on his own— but I don’t know that I can ever give him the independence he wants.

Special needs parenting is hard. I promise you, I don’t ever regret the gift God gave me. Any day of the week I can list a million blessings I have seen just for having him in my life. But, my heart still aches sometimes. Sometimes I look at him and see an 18 year old who has come so far and other times I see how far there is still to go. We can hide behind our smiles and hang on to each and every milestone we conquer but it doesn’t make any of it easy. Our lives will look different forever.

But on this Sunday I just prayed to have him home. The thought of losing him brought panic, because I don’t know what I would do without him. Even though he can often make my life a challenge, he also blesses me richly. He has taught me to trust God with so many of the unknowns with Ben’s life. And, by trusting Him there, I’ve learned how to trust Him better in other areas. 

Ben has helped me see that God gives me the strength to be the mother he needs. I know I’m not perfect. In fact, there are some days where I feel like Ben and want to pack my bags and leave as well. Those days typically come when I’m tired, exhausted or sad. But even when these days are hard I have hope. My Heavenly Father promises me that “those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” (Isaiah 40:31)

So as Ben starts to spread his wings and find some independence in his own life, I don’t have to fear. I can be hopeful because of God. And, I can spread my wings as well. 

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

Stressed Out?

How is Covid impacting your family right now?

 The list of ways Covid is impacting our families could probably be as long as my arm and I have long arms.

 If I were to ask you how you are doing right now, many of you may reply with the words “stressed out.”

 On average, most people don’t like change…especially change that has been forced on us.  Many of us had to find new ways of doing life or are in the process of figuring things out. We are holding onto future plans loosely. This change, this uncertainty leaves us feeling stressed.

Did you know that taking 5 minutes a day to do something that refreshes you has been shown scientifically to help with your stress levels?

Today, I would like to challenge you to pull out your calendar and schedule 5 minutes a day to do something that refreshes you. Treat it like a doctor appointment that you wouldn’t miss or reschedule.

Here are four FREE ideas that can be done in 5 minutes:

1. Deep Breathing – This effective relaxation technique significantly reduces stress levels. There are many techniques to choose from and they are very effective.

2. Meditate – Specifically, meditate on God’s word and the character of God. God is constant. He is unchanging. Nothing that is going on is a surprise to Him and He is in control.

3. Refocus on Gratitude –Yes, there is a lot of hard but there is also a lot of good change that is happening. For example, many families are less busy and are spending more time together than they did before. Each day, come up with three positives that you can be thankful for that day.

4. Laugh – You have probably heard the saying, “Laughter is the best medicine.” Save funny comics or links to funny videos on your computer. Intentionally seek opportunities to laugh even if it is a little silly or is at risk of being met with an eye-roll. 

I don’t know about you but I can just feel the stress melt off of my shoulders when I have a good laugh.

So there you have it. Four things that you can do for free and that can be done in 5 minutes. The REST is up to you… no pun intended. Before you click that x to close this screen. Pull out your calendar and schedule 5 minutes a day each day next week and plan what you are going to try.  Don’t put it off. This is important for you and for your family.

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

 

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!

There Can Be Respite in the Sleepless Storm

It’s fitting that my son’s preferred sound to sleep with is a booming thunderstorm.  Let’s just say, college all nighters don’t even hold a candle to the all nighters my handsome little guy and I have endured together.  His sleep, among other things, was greatly impacted by the effects of his autoimmune condition called PANS/PANDAS.  Before his diagnosis and before we had a treatment plan, my forty-something year old body really struggled to keep it together during a season of difficult bedtimes, frequent nighttime wake-ups and a boy that started each day long before the rooster crows. 

I spent hours singing hymns and James Taylor songs and I’ve Been Workin’ on the Railroad on repeat, to name just a very few, sitting crossed legged in this sweet child’s darkened bedroom willing him to fall asleep.  For a long while, my husband singing Kumbaya in a slow, droning voice over and over and over again, was the only way to peace.  In a room adorned with the darkest black-out curtains they sell and the most realistic and loud sound machine on the market, I would pray for my child's body to calm long enough for him to find rest.  And once the calm came, I’d steal away for a few winks, knowing that I’d soon be back snuggled with this little love of my life, trying to calm him back to sleep once more.

Looking back on those days, having made huge strides in the sleep department, I realize how little concern I took in my own well-being. 

Isn’t that what a mom does? 

We do what we have to, and when it comes to our children, we take on the task at hand no matter what that task asks of us. Those wake-ups that sometimes came as early at 3:45am, were followed by full and glorious and nerve-wracking days.  Days full of coffee and giggles, meltdowns and play dough, hope and worry, and the endless shuttling back and forth to preschool, gymnastics, speech, OT, or whatever that day held.  Then, those days would circle back to Kumbaya once more.

As my son has gotten older, some of those struggles, both day and night, have worked themselves out. Some we have found our way through, some are still a daily struggle, while others are brand spanking new.  I have, though, started to make a point to acknowledge the amount of stress I’ve been functioning under over the past 7 years.  I’ve begun work to heal the parts of me that this has all piled up on.  It is my nature to smile through anything I face. I often proclaim that all is well, or give a good old, “We’re hanging in there!” with a grin and a giggle.  I think in many ways that has helped me to endure the heartache of it all.  It has helped me to conceal the gallons of tears I’ve shed over watching my child navigate such difficulties, though concealing them is entirely unintentional.  What those smiles haven’t helped is in finding any relief from the stress I’ve been under.  

Self-care was a term that kind of bothered me, as if it was this luxury others were afforded, or even an indulgence.

Who has time for that? How could I even squeeze that in?  I’ve learned now that we all have time to care about ourselves and I can squeeze it in.  It is not indulgent to care for the mother of my children.  It is vital.  It can be as small a start as just taking a multivitamin. It can be scheduling an appointment to walk around a park for an hour all by yourself.  It can be reminding yourself of the interests you had before things changed in your life.  I have found that visiting with the old me, for a moment or two each day has done wonders for my stress level.  I wish I had made a point of it sooner, when I felt buried in worry.  It’s okay, though, because it’s never too late to pause and re-evaluate the state of our experience.  We can find peace even during these hard moments in life, even during the loudest booming thunderstorm.

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.

A Good Habit To Break

I overheard a teen at the check out counter the other day use the word "retarded." He wasn't talking about someone but something that was "retarded." Believe it or not, I hear it fairly frequently.  When I do, I try to be polite and let it roll off my back. I'd even say it doesn't rank high in my list of pet peeves since most people don't even think about what it really means.  

The R-word is an expression used for retard or retarded, words considered offensive and disrespectful when used to describe people with intellectual disabilities.  It is also used to insult people, places, and things.  The verb "retard" means to hinder or to make something slow. "Mental retardation" was introduced as a medical term for people with intellectual disabilities , replacing terms that were considered to be more offensive.

Over time, the word "retard" came to be used as an insult, tossed around the playground as a synonym for "stupid" or "dumb." It is not a respectful way to refer to individuals with any kind of disability.

We often fail to understand how words can hurt until they become personal. Right now our country is in a war of words. Books have been written to teach us how to use politically correct words for race, religion, and politics. 

While 'disability awareness' isn't trending like some other topics, I hope you're willing to think about this population for a moment today. 

Here are a few thoughts from a mom of a kid with special needs:

1. Stereotypes are crippling. It affects how the world views my son. He is not dumb or stupid, just a person with  genes ordered differently that you or I.

2. I wish that Ben's siblings never had to hear that word.  I don't want them to think of their brother as "less than" in any way.  He is much more than his intellectual capability.  

3. I'm not trying to censor anyone's language, or be politically correct. I just want to use words that provide appropriate consideration, dignity, and respect for people with disabilities.

4. I'm also not trying to shame anyone.  I've used "stupid" or "dumb" in the wrong way before having Ben.  But, having Ben has taught me that the value of a person is not found in their cognitive abilities. 

5. It's never too late. Maybe you only use the word occasionally or maybe it's a habit. But it's never too late to stop. Here's a way I can help you.

Every time you are about to say the R word... please think about the people you are hurting when you you throw around such a useless word.  There may be someone within earshot that has a friend, sibling or child with a disability.  Consider if their loved one should be reduced to "dumb" or "stupid".  

Also, think about the value that those with disabilities bring into the world.  For example, my kid brings more laughter and happiness to my life than I could ever imagine.  He takes life in stride and could teach us all to not take things so seriously.  Rather than being "dumb", it's almost like he is a genius at teaching joy.

He has compassion. He feels and loves big.  And when you love big, you can also feel hurt deeply.  He hurts not just for himself but for the ones who are hurting around him.  He has a Master's degree in compassion.

He has accomplished many things. He plays soccer, baseball, runs track, and was manager of the Middle School basketball team, High School baseball and football team. 

He is daily teaching me about loving, laughing, patience and working hard.

So the next time you think about using the "r" word just think about him!

It is really a good habit to break and worth it to us!

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

Stages In The Parenting Journey Part 3

That last two weeks I have shared about how our current situation with selling our house due to health reasons and going on an epic family adventure bears similarity to many of our journeys as parents of children impacted by special needs. If you missed those, you can catch last week’s article here.

Stage 3 – Movement: First Unsteady Steps Forward

We were able to keep many kitchen tools and most clothing that was a single layer. Nothing upholstered or thick, no couch, comfy chairs, shoes, coats, papers, books, pictures, nothing made of particle board, etc. Anything that we were able to keep had to have every single surface thoroughly washed and wiped down with the mold cleaning solution before packing it. Our hands had to touch and sort every single item. Many dear, treasured, and sentimental things were simply thrown into a garbage bag or trailer for the dump…my wedding dress, photos of the boys’ baby pictures, our engagement night pictures by the pond out front that would soon no longer be ours, art the boys had drawn for me, Christmas stockings made by grandmothers and great aunts who are no longer alive, the china cabinet we bought on our honeymoon.

The items seemed endless and the process took months. Items we had saved money for months or years to be able to buy and finally were able to add them to our house to make it a comfortable, welcoming home became trash. Some items we sold in a moving sale (before the pandemic) for pennies of what they were worth. Two decades of building a home all gone and no insurance money to replace things. It was all consuming, that’s nearly all I did those 3+ months. Every. Day. Sort, trash, wash, cry, repeat. Just surviving through hurt, grief, and managing the day-to-day task of getting through the crisis.

With special needs, you get to the point that either your time limit has expired, and action must be taken immediately, or your research has progressed enough to make a first decision. In an emergency situation, your research may be listening to and solely relying on the information from a single doctor. Or, you may have time to dig deeper, consult with specialists, talk to friends who have been through it, and evaluate your options. But at some point, you have to make a decision and embark on the first interventions – a surgery, special school, therapies, special diet, or some other program. This may last for a week or it may last a year or more. It may work and you can keep moving forward to the next step or it may not, and you have to do more research and try plan B. Your stomach is likely tied in knots and your thoughts filled with hope and fears as you embark on this first step.

Your new reality starts to settle in as to what this new life will look like – the agony of surgery and recovery, follow up surgeries, speech therapy, trach tube, ABA therapy, doctor appointments galore, paperwork, adjusting your life and schedule around the needs of your child with additional needs, and changing it again at the last minute.

All future plans are written in pencil. It all feels foreign, unknown, and overwhelming. 

At this point in Stages 1-3 in the journey, it’s not uncommon to start asking some soul questions like, “Why? Why me? Why us? Why my child? God, why would you do this? Allow this? Why didn’t you protect us from this? God, I thought I was a good person, serving you, doing life the best I could for you, why did you punish me, my child?”

If you find yourself or your spouse asking these questions, it doesn’t mean that you are a bad person or a bad Christian. It is part of the grieving process. It is part of the healing process.

To be continued…

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!

Who Needs Some Grace?

As we step closer and closer to the start of the 2020-2021 school year, for most of us, there are a ton of unknowns; more unknowns than I would typically encounter with the start of the school year.  All of this has me spinning in a perpetual whirl of worry and confusion and wondering,

“Am I doing the right thing?”

For me, there feels like so there are many choices but none of them are the ones I feel really good or excited about. 

A few weeks ago I was spinning in a sea of worry about the Fall and the idea of needing a lot of grace and understanding in this season was impressed upon me.  I began thinking of all the people I would be extending grace to this Fall and all the people that would be extending grace back to me.

1. My kids- This is ALL new for them. This is disappointing, hard, confusing, sad and filled with unknowns. There is a big sense of loss for their connections with their teacher and their peers. 

2. Their teacher- Teachers have not been taught to teach like this!  As a former special education teacher, I can not fathom how I might prepare for a semester of teaching my students online.  I know the heart of most teachers is to be with kids, lead them to love learning and be successful, thriving students.  What most teachers are having to prepare for goes against how they were wired at their core to care for kids and ignite a strong desire for learning.

3. Other families- The more I talk to people, the more I become aware that everyone is experiencing this differently.  There are a small number of people who are thriving in Covid, a few that are really struggling and many that are somewhere on the spectrum in between.  This range of views and sentiments towards this disorienting experience is hard to navigate with other families and friends.  

4. Myself- I have the tendency to try to control things more than I should. I have struggled to strike a good balance of being all the roles I am needed in in this season.  There is simply not enough time and energy to do all of this to the full extent.  

5. My spouse- He is a fabulous supporter, cheerleader, and a loving husband and father.  Part of his day is spent out of the house working his full time job.  Sometimes, the ability to leave the house feels like a special privilege, especially when I think about what my day will entail.     

6. School administrators/IEP team- My daughter’s intervention team tried to meet just after school closed in early March.  At that time they didn’t even know how to sign documents to initiate her evaluation.  As the months have passed, they have figured out many things, but there are still so many unknowns. Her evaluation has not even been initiated! Her accommodations are mostly supports I have to implement at home for her success in a virtual format.  With no manual on how to navigate this we have had to be very patient with the school team and offer them a lot of grace as they try to figure out what to do.  I am not implying that we compromise our child’s education for the circumstances, but offer a large measure of patience when working through the challenges as a team.

The list could go on, to include employers, immediate family members and many more. 

So what does extending grace look like practically?  Being OK with the unknowns, things being slower, loud and messy.  Maybe this looks like doing the opposite of what you are inclined to do or say.  

Maybe grace in this season looks like focusing on personal self-care.  Taking small moments of deep breathing, breath prayers, walks, enjoying nature and going to bed earlier are some simple ways to care for ourselves during the day.  Try using some of the sensory strategies we use with our kids on ourselves to remain calm. Make yourself a cup of tea and look out the window for birds.

Maybe grace in this season looks like stepping up our organization game. Packing lunches the night before, laying out clothes and waking up earlier can help us be able to better focus on the hard things that we will encounter during the day.  Creating visual schedules and using timers or alarms on our smart devices can help us not miss the virtual check-ins with the teachers.  

But maybe ultimately grace in this new school year can look like us being more realistic, more loving and more flexible with everyone and everything we encounter.  And ultimately, that is the example I want to set for my children, as now more than ever, they are watching me and learning from my actions.

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. 

Stages In The Parenting Journey Part 2

Last week, I began this series by sharing about this epic adventure our family is on. If you missed it, you can read it here. This journey our family is on share a lot of similarities to the journey in special needs and has four stages. This week, I will look at stage two.

Stage 2 – Shock & Research

We realized we had to move if I was ever going to have the chance to heal and recover my health.

Following that demarcating decision there was so much to do. I dove into research, as I’ve become accustomed to doing. What could be salvaged and what could not? What process it would take to save what we could? No one fully agrees. It’s hard to get a straight answer. In fact, there is no one size fits all answer to the situation. Not only is there no simple answer, there’s no straightforward answer.

After a fair bit of digging and lots of reading including books and webpages of specialists, we had to make a decision and move forward even though there was no sure answer. Based on the best information we were able to gather and based on the testing we had had done, we had to get rid of nearly all of our things. Anything that wasn’t solid and completely washable in a special solution that kills mold and breaks down mycotoxins had to go. No, surely not. This couldn’t be the answer. But it was. 

In the special needs journey, an ultrasound may show an anomaly, a medical complication may show up at or shortly after birth, a developmental issue or regression may be noticed or occur between 1-3 years old, there are different demarcating starts to the journey. But they are all followed by a lot of research and figuring out what is next. What can be done? What is the prognosis? What does the diagnosis mean? How to handle the interventions needed whether it is surgeries, medical treatments, therapies, or all of them. Who goes with the child? Who takes care of the other kids? Who works to earn the money? How do we juggle it all? Mom and dad’s learning curves are steep. There is so much to learn, so much that is yet unknown, so many decisions to make.

There often is no one right choice, yet a path forward must be chosen and pursued. You didn’t want to go this direction. You don’t like any of the choices. Is it possible this is all a horrible dream and you’ll awake soon?

To be continued…

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!

We’ll Get Through This

We’ll get through this.

 Those are the words I was about to type for the beginning of this post when the tornado siren blew. I grabbed my computer and phone and ran through the kitchen toward the basement apartment where our daughter and her family live.

She met me on the stairs. “Mom, tell the construction crew to come inside.”

10 minutes earlier  they’d been in the footing trenches for our house addition, building forms so the pumper truck could pour concrete. Now they were running through driving rain to their truck.

I opened the front door and flagged them down. Soon my daughter, my son-in-law, my grandkids and I were sharing the basement with 4 strangers sheltering from the storm together.

None of us had masks. We stayed as far from one another as we could, and we watched as the storm intensified. The electricity flickered and went out. A doe and fawn ran across the back pasture desperate for cover.

The construction workers called to see how their families were. My husband called from work to see how we were. “We’re okay,” I said. “We’ll get through this.”

After a half hour, the storm let up and the construction guys left. “Let’s hope no one gets COVID,” I said once they were gone. “We had to choose between possible death for them and a slight risk of sickness for us,” my daughter replied. “We made the right choice.”

We went upstairs a few minutes later and found trees down, our yard light down, electrical lines down. Miraculously not one branch had landed on our house, our camper, or our cars. The damage was a new bead to add to the string of challenges weathered by our family over the years.

My mom’s family survived the Great Depression by shooting pigeons and raising vegetables. She was in high school during World War 2.

My parents weren’t even 30 when Dad was diagnosed with multiple sclerosis. Mom furthered her education while teaching school, raising 3 kids, and caring for Dad.

My husband and I cared for our medically-fragile baby while living 70 miles from a hospital. That baby lived with PTSD for 26 years before it was diagnosed and treated.

Floods, blizzards, ice storms and more in our 43 years of marriage.

Now this unusually ferocious and widespread rain, wind, lightening, and thunderstorm. In the middle of a pandemic. While building an addition onto our house.

Our family, like yours, has an ever-growing string of challenges. I, perhaps unlike you, have doubted God’s goodness during the worst bits of them. But in every case, once the bead is knotted in place, I look back and recognize the same two life-giving truths.

God was present with us from beginning to end. And our faith is the stronger for it.

This morning, still without electricity, my husband headed outside to cut up branches and haul them away. On his way out the door, he smiled and said, “We’ll get through this.”

With all my heart, I want you to know that what my husband said is true. Whatever your hardship or challenge is today, be very sure that you will too.

Nevertheless, the righteous shall hold to his way,

And he who has clean hands shall grow stronger and stronger.

Job 17:9

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 recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Stages In The Parenting Journey Part 1

In 11 days from when I’m writing this, our family is scheduled to launch out on an epic adventure. A 9 to 10 month cross-country RV trip. We are getting final details in place – paperless billing, homeschool supplies set, wardrobes minimized, sizes updated (growing boys – sheesh, all the fall clothes are too small), and so much more.

As I reflect on how this epic adventure came about, I see a great similarity in this actual trip and the process parents of kids with special needs go through in their journey. There are stages in both journeys and they parallel.

I’ve been asked repeatedly if this was something we’ve always wanted to do, planned to do, saved money to do. Uhhh, no. Personally, I always thought it would be amazing and cool, but thought it would never be possible for us because of the expense and upkeep of having a house while also getting an RV and leaving for months on end. And then…

Stage 1 – Shattered Hopes.

We learned our house had mold. Our dream house. The prettiest two acres you’ve ever seen bordered by pine trees giving it privacy, a lovely pond that gives my child, who is allergic to chlorine, a place to swim to his heart’s content, grandma and grandpa next door to love on my boys and for my boys to help them with projects, the most efficiently designed 4 bedroom house with large rooms and double closets I’ve ever laid on eyes with a dream kitchen and custom cabinets, a lovely workshop out back for Jonathan. Organic fruit trees, berries, and my favorite flowers dotted throughout the property. And oh the gorgeous welcome of the tree-lined drive that flowers deep pink in spring. But, I have been struggling with health issues for several years and no doctors were able to figure out what was wrong or how to help me feel better. Through a process of elimination and investigation we learned…mold. In our home and in our church, which doubles as our homeschool co-op building. The two places I spent nearly all of my time. I had become so incredibly sensitive to mold that in order to heal, even after fixing moisture issues and remediating, we knew we’d have to move. No more dream home and property, no more homeschool co-op, no more involvement with our church family at the church building. Crushed plans. Shattered hopes. Loss.

Does that sound familiar to your special needs journey?

When you were pregnant, so many hopes and dreams and plans for who your child might grow up to be. A sweet little girl with silky brown curls and a love of… maybe horses? Maybe rainbows? Maybe a math whiz? Or a bookworm? Who grows to be a teacher, doctor, accountant? Dad walking her down the aisle in her dream wedding dress. A delightful little boy with freckles who scares his sister with surprise frogs, plays fetch with the dog, collects rocks, and delights in watching the garbage truck on Tuesdays. A track runner? A football linebacker? A robotics champion? The possibilities fill your head with dreams and possibilities…but then a vacant stare, not responding to his name,  her ultrasound shows an abnormality, a seizure, lost words, flapping hands, a NICU stay – for months, surgeries. A diagnosis.

Life as you dreamed, hoped and planned will never be the same, will never happen. Life will be forever altered. You are crushed. Your dreams are shattered. Your heart is broken. What was will never be again. And what is ahead, you do not know other than that it will be hard.

At this point, you may jump right into action mode, might bury your head in denial (that may be okay, temporarily, it is part of the grief process after all), might get angry – at God, doctors, your spouse, yourself, or just life in general. You and your spouse may react in opposite ways. It’s not uncommon for the wife to jump straight into research while the husband defaults into denial and anger.

Just as we didn’t stay in the stage of Shattered Hopes when we found out that we had to move out of our dream home and leave our church family, this stage is not the end-all be-all in our journey as parents of children impacted by disabilities and special needs. In the upcoming weeks, I will continue to share how our rv adventure compares to our special needs journey and look more closely at the stages that many of us go through.

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!

Are You Feeling Stressed?

It's August! What does August bring to your mind?

For me, it's still lots of summer memories. Garden harvest. Sweet Corn. The grass gets a bit brittle underfoot as less rain and hot days combine. And now, school.

Growing up in Michigan, school couldn't start until after Labor Day due to all the farming families. But in Indiana, school starts around mid August. Now on our 11th year of homeschooling, I've come to like starting school at the beginning of August. I use the term "like" loosely. I don't like starting school then, but I find it very beneficial and I like the benefits.

Why?

First, in Indiana homeschool law says you do school for 180 days. I've found that our family takes a lot more days off here and there throughout the year - canning peaches, plums, pears, running errands, appointments, I travel for speaking at conferences, etc. Those days add up, so if we don't start our year early, we don't finish until well into summer weather. Which in the north, is when you can't wait to get outside after the long winter and motivation for school work quickly dwindles for everyone, me included, when the robins start chirping and sunshine beckons.

Second, after several weeks off without a lot of directed activities, which at first is amazing, becomes well, stagnant and idle minds (even if bodies are active) start to wear on each other. So, while I get reluctance and groans about starting school again (afterall, they are boys and not the kind that love academic work), life, routine, and direction helps things run better in the household. Some years I start slow and ease into it, sometimes we jump right in with a full schedule.

This year, I'm prepping for a cross-country RV trip for the next 9-10 months (we leave in less than 2 weeks!) and I'm a little too busy to take on teaching right now, so we are starting with online electives where they'll each complete 1 course this month while I get things around for the trip and we hit the road. That will give me a couple weeks to get up to speed on the learning curve of RVing as well, before we dive into the full school schedule.

Whew, so that was a bit of rambling and sharing what our August looks like. Why do you care? Well, if you hadn't picked up on it, another theme of August is often STRESS! How many of you can relate to that? New things, new teachers, schools, schedules, establishing different routines, early mornings, deadlines, adjustments. For some of our group, it can also be a stress relief - to again have a team of people helping do the heavy lifting of daily care, therapy and interventions. But it often comes with anxiety about how will the new teacher, therapist, etc mesh with my child?This year, with COVID-19, it's magnified - it's not just a new school, a new routine, but school as it's never been done before. And for kids who can't tolerate change, yikes! 

So what is a STRESSED OUT mama, or dad, to do?  That's what August is all about here in the Hope Anew - STRESS RELIEF  or more accurately, STRESS MANAGEMENT!

Because we all know all those responsibilities aren't getting relieved anytime soon, so we we need to pay attention to managing the stress, and yes, stress relief, because as we "manage" it can reduce our stresses in life and we can work the stress out of our bodies.

Who's ready to get some stress relief with me? Woot! Woot!

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!

To My First Born Son On His 18th Birthday

18 years.

18 years filled with laughter and love and sometimes heartache and tears. 18 years of watching every milestone and “checking it off” – feeling like we accomplished something. 18 years of watching some milestones pass by and realizing we still haven’t met them and dealing with the grief that these are the milestones that you may never meet.

But as I write, I realize you have risen above my expectations I had for you and I know you will continue to. It’s because even though there are many things we may have ahead to learn there are things you have taught me and others.

…you have taught me God’s sovereignty. From the moment I held you I knew He had a plan for your life. When we found out about the Down Syndrome, I didn’t understand why God had chosen this path for you or me. As the dust settled and the tears dried there was one passage I clung to. The passage is in John 9 when Jesus heals a blind man. Although I knew that “healing” was not the answer for a genetic condition. This scripture helped me find an answer for why God chose this path. Jesus’ answer is in verse 3. Jesus’ followers were baffled. Why was this boy born blind? Obviously someone sinned . But Jesus responds “he was born blind so that he could be used to show what great things God can do.” Now 18 years later I am able to see so many of these great things. I have learned it’s not my fault or that I’m being punished . These verses remind me that your disability is anything but that. The plan God had all along for you is a gift so that you can display the works of God through your life and your unprejudiced mind and heart.

… you have taught me patience. Every step of this journey together has been slow, every milestone, every word, every year of school, every IEP – a lesson in learning to be patient in God’s timing. While I’ve spent days, months and years waiting for each step, It causes me to think how patient God is with me. So many times it takes me so long to learn things that I’m sure God feels like he has tried to teach a million times over. You are my visible reminder that God brings beautiful blessings in His time if we just wait.

…you have taught me to laugh. You are silly. Always trying to make me laugh. And always laughing. You can make anyone laugh and you know how to laugh at yourself. And when I start to take life too seriously you are there to help remind me that life is too short not to laugh a little.

…you have taught me to see things through different eyes. To catch a glimpse of what really matters most. Not the little events of life but the way these events affect our soul and others. Your concern when others are sick, or sad. The way you never want to make anyone mad. The way you put others first. I often wonder what the world would be like if we all saw others through your eyes.

…you have taught me unconditional love. You give and accept love from others with no conditions. You share love so easily and I’ve seen you hurt because of the way you love someone or something so hard. Your heart is so big and filled with so much love for the people you know. You have taught me that loving is not about what we want others to be but about loving them as they are. It’s about loving me when I have a short temper or snap at you. It’s loving like Christ … not because of anything I could do but loving because that’s what you are.

I’m reminded of the old hymn, “Come Thou Fount,” it speaks in the second stanza of raising an Ebenezer. Strange language isn’t it? The prophet Samuel set up a stone after the LORD helped Israel win a great victory. This was not without repentance and seeking the LORD on Israel’s part. They had to put away their false gods and pray. The stone, named Ebenezer, commemorated that victory, for “Thus far the LORD has helped us” Whenever the Israelites would pass by the stone, they would remember what they were capable of, and how the LORD acted on their behalf.

So you my son are my true Ebenezer. You are the physical reminder of God’s faithfulness and goodness. In 18 years you have taught me all these lessons and more. You remind me daily what the Lord is capable of doing. And you show me daily that God has and is still continuing to teach me more about Himself through you.

So HAPPY 18TH BIRTHDAY Bub. You are so loved!

Written by Leigh Ann Kaman

Leigh Ann Kaman is a wife and mom to three kids, one of which has Down Syndrome. She advocates in the special needs community and has started a ministry in her church for those touched by special needs. She is also actively involved in Capernaum, a ministry of Young Life for young adults with disabilities. Writing about her life as a special needs parent has always been her passion. 

Summer Memories

Ahh sweet Summer memories...this year has put quite a twist on any memories.  For our family, it felt like Summer essentially began in mid-March when the kid’s schools closed for COVID.  Although we tried to stick with the programming our country sent home, the plans didn’t really work for my family. 

With a background in special education, I was ready to improvise and try to keep our family moving in a positive direction.  We began adding special things to our day to help each day feel different from before.  We worked on some school and some character building.  We tried to learn to love the people in our house really well.  While some of those things were easier than others, we made the days pass until school was “officially” over as best we could.  

It has been a relief to give a close to the 2019-2020 school year and step into true “summer mode”.  

My family has never been one to plan a typical week long vacation during the summer but rather take advantage of smaller opportunities as they come up and fit with the needs of the kids.  We found so often in the past, planning a week long vacation never came at a good time.  With the anticipation of the trip, challenging behaviors swelled and thoughts and doubts like “This is not going to be a vacation at all!”, “What was I thinking?” filled my mind and heart.  We would walk into those vacations stressed and trying to calm an overstimulated/excited kid.  On top of that, we often had a sick kid.  My daughter seemed to be often sick and always right before our trips. Needless to say, it was not a good memory for my husband and me, let alone the kids. 

While we have escaped illness through building her immune system and more likely limiting contact with COVID concerns, advance planning and long trips just doesn’t work for our family.  We have settled into the spontaneity of short trips and day visits that work well for us. The difficult part for me is fighting the comparison of other people’s experiences.  I can often lose myself in the pictures and narratives people post of their vacations.  While a picture is only capturing a moment and most of the time only the best moments, I can still be tricked by someone else’s experience, thinking mine is insufficient in some way. 

Since “Summer” abruptly began for us in March, we began a paper chain of good things from our day.  The idea at the time was I wanted and needed a way to know when life would go back to a normal rhythm. I wanted to know when the bus was coming back down my street. I wanted to know when I would have my 2 hours to breathe and run my errands, squeeze in a work call and brush my teeth before noon!  Since that was a big unknown and still is, I wanted to mark each day with a positive by adding links to a paper chain. 

The kids and my husband got into the idea and each night at dinner we add a paper link to mark a happy memory from our wacky day.  There was always something to add.  We have continued with this each evening adding different color links to mark the happy memories amidst the blur of days that drag on.  Each day still feels like a tiring Saturday in which my husband and I are trying to work and nurture children.  In the middle of this grind, we are able to intentionally acknowledge the good things with our children.  The paper link helps each of us look for the happy and still anticipate the future with joy.  My middle daughter asked the other night if we could decorate the Christmas tree with the paper links.  We are 5 months away from Christmas, but she is already looking forward to it. For me, thinking ahead to Christmas reminds me of the ground we have already covered and the challenges we have overcome with so much change and unknown in our life all at once. 

Reflecting on the time and memories captured in these links gives such a positive view of what we have gone through and a hopeful outlook for the coming months.

This summer is off to a good start for our family.  We are sneaking quick trips in between virtual summer school and tele-therapy sessions.  The great joy comes at the end of the day when I get to hear what part of the day was remarkable for one of the kids or my husband.  We have added links saying “swimming” in the spout pool, berry picking, finished the first chapter book alone, took off training wheels, beautiful sunset and someone even added time as a 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. 

Summer To Remember

It’s July! This means the start of a new month and a new theme in our online community! What memories, thoughts, scents, events, and feelings does July inspire for you? 

For me, it's the feel of sunshine on my skin. Thoughts of parades, fireworks, family gatherings, bike riding, picnics, sandy beaches (I grew up close to Lake Michigan), weeding the garden, the sound of corn growing, the feel of garden dirt and yard grass between my toes, playing in the sprinkler, the tastes of sweet corn dripping with butter and watermelon. 

As I think of this, I realize these are mostly all from when I was a kid.

Since I've become an adult, I have rarely taken the time to slow down enough to soak in the sensations, scents and joy of summer. Summer was my favorite season as a kid. While I now also love spring and fall, I still love summer. My birthday is also in July, so that's just a cherry on top of the already delicious treat of summer! 

As I reflect on these memories, I want to enjoy them again and create them for my kids. Not only will this create amazing memories for them, there are other benefits too! Like strengthening our family and relieving stress, and who of us doesn't need a little - or a lot - of stress relief! 

So, our theme this month is (drumroll)... Summer To Remember!!!

And we mean this in a positive way, not because of the pandemic, lol. We can create times of amazing memories with our family regardless of the pandemic. Activities can be simple and cheap or free, simply by intentionally selecting some activities to do together this summer and checking them off as you go can help make your summer a Summer To Remember!

We have a cute, free download graphic chart for you to print and fill in with your family. Get suggestions from your kids and significant other and write them down. Plan to incorporate them throughout the next month or two and check them off as you go. If you are challenged coming up with ideas, we've got you covered. We are also offering a free download of 101 ideas for you to use as-is or to help jump start your own ideas.

Don't make it overcomplicated or something you have to put a lot of energy or $ into and let that stop you. Did you notice the things I remember about summer from my childhood? Grass and dirt between my toes - how often do we walk outside barefoot now? Soaking up the sunshine. Cloud shapes. Watermelon. Playing in a sprinkler. Stargazing.

These are your action steps:

1. Print the chart and 100 ideas list. 

2. Choose ideas from the list or brainstorm your own.

3. Fill in your family's chart. 

4. Begin making it a Summer To Remember!

5. Share your adventures with us in the community! We can't wait to see all the memories you're making with your family.

Join us in the Hope Anew Online Community to get the free downloads. Go to members.HopeAnew.com and join for free!

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!

Love Your Neighbor

What do I do? This is the question that has kept going through my mind last week as I have seen so many families struggling. I’ve read the Facebook posts of my African American friends and my heart has wept with them. 

I am a middle aged white male that lives in an agricultural area that is 96.7% Caucasian. This makes me feel like I should be the last person to speak on this matter but when you see injustice you can’t remain quiet. When your friends are hurting, you don’t ignore it.

 I am going to step out on a limb here and share what I’ve learned about inclusion based on my experience as a dad of a child with special needs. I’m not pretending to understand the depth of the pain that people of color are experiencing and I’m not saying that the pain or injustice is equal.

As a special needs dad, I remember the disgusted looks when our son melted down in public. The comments and the whispering under the breath. I’ve seen the public make fun of those with disabilities. Kids calling other kids with developmental disabilities names and parents turning kids away so they wouldn’t have to feel uncomfortable around the nonverbal child.

The sad thing is that this is not just limited to public settings. I can share story after story of families who were told their child was not welcome at a church because they were “disruptive” or the church didn’t know how to come alongside them. I can share story after story of families of kids with disabilities that have completely walked away from the church because of how badly they’ve been hurt.

Perhaps this is your story. 

In Matthew 12, Jesus was asked what the greatest commandment was. He replied that the first is to love the Lord your God with all of your heart, soul, mind and strength. He went on to say that the second greatest command is to love your neighbor as yourself. 

As I look back at the period of time in our lives mentioned above, what our family would have wanted and what many of the other families we talk to would have wanted is to be loved and to have their children be loved. 

It is hard to love someone as yourself if you don’t know them.

In that season of a few years where things were especially rough, we only had one couple sit down with us and ask us how we were doing. They then just sat there and listened and listened and listened some more. They didn’t offer advice. They didn’t go into fix it mode. They didn’t make promises.

They loved us by listening.

So back to my original question. What do I do? I can love my neighbor as myself and I can do this by listening.

Written by Jonathan McGuire

Jonathan McGuire is the father of two sons and two sons and the Co-Founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disabilities and special needs on a spiritual and emotional level.

You can follow Hope Anew on Facebook HERE. Hope Anew has launched the Hope Anew Online community and would love to have you be a part of it! You can learn more about it at WWW.HOPEANEW.COM.  

DUE TO COVID-19, HOPE ANEW IS WAIVING ALL MEMBERSHIP FEES FOR THE COMMUNITY!

Quarantine Has Changed Me

This time of quarantine has been challenging. It has been no small task to take a large step outside of the roles I normally hold to fill the roles that quarantine requires of me. It has been a challenge to decrease the freedoms I have at my disposal. But it also has been a time of readjusting the expectations around my life and that has been a huge benefit. I wanted to take a few minutes to share some of the positive changes that have come out of this time.

1.  I like to go-go-go. It has been life altering to suddenly have to stay in place. I have literally had to learn how to sit on the couch and just BE. In the first days of quarantine I somewhat panicked about this, but much to my surprise I have enjoyed this slower pace. As things being to open and schedules threaten to get busier I am finding myself really weighing the benefit of an added activity. Quarantine has taught me to slow down and protect the time our family has together.

2.  I hate to write this one, because it sounds very shallow, but I have learned the value of “do I really need that”.  My days of heading to Target to stroll the aisles and destress and ultimately buying things I don’t really need have passed.  Amazon Prime doesn’t really have 2 day delivery anymore. And I can’t easily just run through the Starbucks drive through as the line is now 5 years long.  Basically what I am saying is my Instant Gratification habits have died. And I find myself asking “Do we really need/want that?”. And guess what that has helped? Our bank account. Isn’t is magical when you stop spending money aimlessly you have more? Dave Ramsey would be so proud! We have saved so much so that we have been able to do a couple house projects we had trouble saving for before!

3.  God is the same Yesterday, Today and Tomorrow. Our daughter is medically complex but has had a really good few years. The fear of her getting Covid has brought back some of those fears I have had about her health. When I feel the anxiety rise I just have had to come back to the simple truth that God never changes. He is good in all things. That doesn’t mean she won’t get sick, but it means if that happens we will have the strength to get through it. A good friend used to tell me when I worried, “this fear is not upon you, so you don’t have the strength to handle the situation. But God simply does not leave us alone in a fire, so if that situation came about you would have strength to walk through it”. Guess what? Those words have never failed me, and they won’t in this situation either.

4. Expectations make or break the day. This is something that I have worked hard to teach my children during this time. But honestly, I have had to consistently remind myself as well. Expectations need to be realistic, verbalized and agreed upon. I have had to practice setting them with my children during this time, especially as we learned to home school. But practicing having realistic, verbalized and agreed upon expectations has even really helped my husband and I. We go into the days knowing what each other needs which sets the tone for clear communication and mutual goals. 

The beauty of walking through hard things is the great amount of personal growth that can come if we allow the circumstance to mold us for the better. 

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

Count Your Blessings: A Way To Stay Sane in a Crisis

Count your blessings, name them one by one,

Count your blessings, see what God has done!

When I was much younger, I rolled my eyes every time we sang this hymn at church. To my mind, the lyrics touted a solution far too simplistic for the troubles our family faced.

Even when I did as instructed, life didn’t get better.

 My dad was sick and getting sicker. My mom shouldered too much stress as she worked to feed and clothe us. The trend continued after the birth of our son. Five years and seven surgeries into his young life, life was hard and getting harder.

 So far as the count your blessings thing went, I told God to count me out.

 Then, one day the beginning of Zechariah 4:10 caught my eye: “For who has despised the day of small things?” (NASB)

Hmmmmm. 

If my response to the lyrics of Count Your Blessings was any indication, I had been despising the day of small things for years. Maybe even decades. 

Not good. Not good at all. 

An attitude change was long overdue, and it was a hard change to make. But as I began to look for small blessings, it was easier to see and delight in them. 

And then, along came COVID-19.

 The temptation was strong to stop searching for small and good things while living through such a vast pandemic. But for my own mental and spiritual health, I kept looking for and found these 10 tiny and precious treasures.

1. The ability to walk. My dad’s 38 years in a wheelchair make me grateful for mobility every day.

2. Favorite notebooks and mechanical pencils. I don’t know why speckled composition books, yellow legal pads, architectural mechanical pencils bring great joy, but they do.

3.  Ordering online. It’s fast. (At least the ordering part is fast.) It’s easy. And it’s much safer for old coots like me who want to stay healthy until the risk of catching COVID-19 go down. 

4. Our espresso machine. Several members of our household love good coffee, so we splurged on it last summer. The coronavirus shut down feels less confining with delicious espresso at hand.

5. It’s spring. More daylight and warmer temperatures bring me joy and hope.

6. Bird song. Another daily source of joy and hope.

7. Intergenerational living. We live in the same house with our daughter, son-in-law, and their two children. This intentional living arrangement began 4 years ago, and it takes work to keep things going smoothly. To us, it’s worth it. Doubly so during the shut down. Our daughter trimmed my hair a few weeks back. Our son-in-law does the grocery shopping. And water, sewer, garbage, and energy bills are split between families. Win! Win! Win!

8. Eavesdropping on a 5-year-old at play. This could have been lumped in with #7, but listening in on a child’s make believe world is so dear, it deserves its own spot.

9. Happy birthday to me. Our 2-year-old granddaughter sings this when she washes her hands. It’s too much cuteness to lump in with #7.

10.  FaceTime. We use it to connect with our other 2 grands and with my 91-year-old mom who’s in a residential care facility. Because of #7, all our grands can visit at the same time, and Mom gets to see her great-grands. More wins!

Caregiving or COVID-19 can make it hard to count your blessings, and I get that. But I encourage you to look for them, no matter how small. They have the power to keep you sane in a crisis.

Because little things matter.

Tiny things count.

Small things add up.

And you are worth it.

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 recently co-authored Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities with Dr. Gary Chapman. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

Parents of kids with Special Needs – YOU ARE AMAZING!

I was walking up the driveway pondering some of the parents of kids with special needs we know and marveling at the common traits they have and how exceptional they are. I think parents of kids with special needs are some of the most wonderful, amazing people I have ever met.

Here are 5 reason why:

1. They have their priorities straight. So much of America’s population, even Christian, Bible-believing, church going population is about achievement, looking good, having fun, wearing the right brand of clothing, being cool and keeping up with the Jones’. If you can’t do that or don’t care to do that, you kind of disappear from being accepted and included.

   As a group, the special needs parents I have met have learned that relationships, loving other and being there for each other in hard times matter more than anything else next to clinging to God. Yes, they love a good night at the movies and wouldn’t turn down a trip to Dollywood. After-all, Dollywood has a sensory room for when junior hits meltdown, which can make the trip a possibility.

2. They have learned to face difficulties. Challenges have become a way of life. Parents of kids with special needs are the strongest, most determined, loving, ferocious (mama bear, anyone?) group of people I’ve ever met. Daily life is difficult to say the least. Some seasons require just living through the next minute or hour, forget planning for tomorrow, next week or next year. They are masters at flexibility and changing plans as navigating around obstacles has become second nature.

3. They see value and worth where others see inability and hardship. While looking in from the outside, others see children or people who can’t walk, can’t talk, look different, are challenging, need help, take resources. Parents of kids with special needs see the most treasured people in their life who give unconditional love, bring joy, work harder than anyone to succeed at the simplest of tasks, get delight from simple things that others easily overlook, and a myriad of other qualities. Just talk to a parent of and adult child with special needs and you’ll likely hear how their child with special needs has blessed them more than they ever anticipated.

4. They never give up. Yes, they get weary – very weary. They may want to quit – for a day in order to nap and rejuvenate. They may want things to be easier, but when it doesn’t get easier, they still don’t give up. This is their child, whom they love dearly. Spouses may walk out. Parents and in-laws may criticize and belittle. Friends may desert them. But, they never quit on their child. They do what is within their power and resources to help and love that child to the best of their abilities.

5. They turn hardship into blessing for others. It may take a few years because those early years they are just barely surviving, and they may go back to survival mode here and there as their kids get older and hit different challenges. But, once they get the hang of things, they start helping other parents of kids with special needs. I’ve met a mom who started an entire company of patented weighted blankets that started because of her daughter’s special needs, and my son has benefitted from her blankets. I’ve met a mom who started a nonprofit helping others learn how to rest and rejuvenate in the midst of great pressures, duties and stresses because of her own journey as a mom of multiple kids with special needs. I’ve met many parents of kids with special needs who write and speak to encourage and equip other parents and to church ministry leaders to help them be able to reach out and help more families. I could go on and on about the incredible things parents have done to help others.

That’s my husband’s and my story too. Both of our backgrounds are in counseling. We were missionaries and he was doing trauma healing work in a refugee camp in South Sudan when he saw the correlation between the trauma and questions the refugees were struggling with and the challenges he and I had experienced as parents of a child with special needs. When he got home to the States, he shared with me and as we talked to other parents the need was obvious. We couldn’t find an organization that was addressing it, so a few years later we started Hope Anew.

Moms and dads of exceptional kiddos, we applaud you and we think you are amazing. I know most days you struggle to make it from morning to night and some of you struggle to make it through the night too. I know you are barely hanging on sometimes. I know your heart wrenches as you watch your child struggle daily with the simplest of things. I know your heart weeps when you can’t provide something that will help your child. I know your heart leaps and sings when they conquer a task they’ve worked at for years. I know it’s a tough road. But I also know you have risen to the challenge and are making all the difference in the world for your child. Thanks for being an amazing parent.

You are our heroes!

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!

Overcoming Parental Burnout

Help! I’m on the road to parenting burnout and don’t know what to do!

 This is a hard place to be. When we struggle with burnout at work, we can look for another job if needed. When we find ourselves here as parents, it can feel hopeless at times. We can’t just say,  “I’m done being a mom or a dad”. Although my wife has tried that but after a couple hours she’s ready to jump back in.

As parents whose children have additional needs, the recommendations you are about to read will seem difficult and if you are a single parent, they will seem impossible.

So what do we do when we recognize we are showing signs of burnout?

1. Talk to someone and ask for help!

If you are married, let your spouse know where you are at emotionally and ask if they can help with a specific task.  “I am completely overwhelmed and could use extra help for a while. Can you watch the kids for a couple hours while I get groceries?” (You might want to allow extra time to drink a cup of coffee at the local coffee shop and bring one back for your helper. 😁)

If you are a single parent, this is really hard. Do you have a friend that you trust that you can both share where you are at and that you can ask for help from?

It is oddly hard for us to ask for help. There are a lot of reasons for this. We may be thinking that we don’t want to add extra burden on someone else or one of many other excuses.

Here are three things to keep in mind when asking for help:

• Be specific. It is hard for someone to agree to help when they don’t know what they are agreeing to.

• Be flexible. If a person is only available to help during a certain time, what can you reschedule to try to make that time work?

• Let go of perfection. Realize that things may not be done perfectly or the way you would do it. If it is not something that threatens the health of your child, then let it go.

2. Prioritize sleep.

You likely know this is a need already. Our bodies need sleep. This may mean taking a nap as a family. You may need to ask a spouse, friend, someone from church or a babysitter to watch the kids while you take a nap. This may mean that the stack of dishes doesn’t get washed or put away or that load of laundry doesn’t get folded.

3.     See a counselor.

Many churches have an agreement with local counselors and will pay for you to see the therapist. There was a period in our journey when Sarah went to see a therapist that our church provided. The main motivating factor for her was so she could have an hour break.

4.     Establish a routine and minimize multitasking. 

I’ve heard multiple parents express that they are experiencing decision fatigue. Routine will help with this. Establish a two week menu plan so you don’t have to think about what you are going to eat every day and so you can use the same grocery list each time. Determine which outfit you will wear each day of the week and stick with it so you don’t have to think about it every morning. One mom we know wears a t-shirt every Monday that says, “This is my Monday uniform.”

We often feel pressured to multitask. In some cases, I feel like this is especially true for women. The truth about multi-tasking is that it can decrease our productivity by up to 40% and we typically feel more stressed as a result. It is not completely unavoidable, but how can you set boundaries to minimize the amount of multitasking you do in a day. 

5.     Take a break.

It is important to take a break, even if it is only 5 minutes.  Let’s be real though. Sometimes we need a longer break.

Here are some ideas to help with that:

• Talk with your pastor and see if there is grand parent or nurse that would volunteer to  come watch the kids. You don’t even have to go anywhere. You could take a nap!

• Check with area churches and see if any of them provide a respite night for parents of children impacted by disabilities and special needs.

• If you don’t see a church that does this, check out 99 Balloons or Nathaniel’s Hope and see if they come alongside families in your area.

6.     Take care of your body.  

This is often the last thing that we want to do. It adds extra stress when we think about it and seems like more work.

What we put into our bodies can help or hinder our recovery from burnout. Nutrient dense foods provide us with the fuel we need to recover. Our eating habits do impact our overall health, energy levels and how we feel about ourselves.  I’m not saying that we need to always eat organic freshly prepared meals. Sometimes self-care means throwing that frozen pizza in the oven and having a bag of chips.

Related to this is being physically active. Aside from the physical benefits, being active can boost energy and increase those feel good hormones. This doesn’t have to be going to the gym for an hour each day. It can be  as simple as going on a walk with your dog, playing outside with your kids,  or taking time to stretch your body.

7.     Laugh.  

When we are stressed, it can be difficult to find things to smile about and laugh about. Laughter is refreshing and lightens the mood of the entire house. Save a folder on your computer with links to funny videos, jokes, etc. Take a 5 minute laugh break every day and this will help so much with your stress levels. Even fake or forced laughing has been shown to be beneficial. In fact, here is a funny video to help get you started.

Change and recovering our health happen incrementally. Don’t feel like you have to do everything on this list this week, but what is one thing you can do?

Written by Jonathan McGuire

Jonathan McGuire  is  the father of two sons and the co-founder of Hope Anew, a nonprofit that comes alongside the parents of children impacted by disability on a spiritual and emotional level. You can follow Hope Anew on Facebook here.

Hope Anew has launched the Hope Anew Online Community and would love to have you be a part of it! You can learn more at www.HopeAnew.com.  Due to COVID-19, Hope Anew is waiving all membership fees for the community!