Healthy Rhythms Part 1: Rest

It feels a little bit vulnerable to write about the importance of Healthy Rhythm to this group. Because let’s be honest, raising a child with any kind of special need does NOT lend itself to that. There are so many things that are unpredictable and our plans change frequently.  Because that is our reality it makes rest so much more important.

Early on in our special needs parenting journey my husband and I were really lucky to be a part of a church that highly valued healthy rhythms of rest, work, and relationship, and so they became priorities for us.

So, let’s dig in and talk a bit about healthy rhythms.

One that is extremely important for all parents, but even more so those of us parenting child with high needs is REST. I define rest as something that brings you life. And that might look extremely different person to person. For me rest is active. I don’t do still well. So getting to go peruse target- kid free, while listening to an audio book feels restful. Or spending some time being creative, whether that is doing a home project, or sewing, that process of creating while might seem like work gives me life.  Now my husband would consider both of those things work. And his rest often looks like getting away to watch whatever NFL game is on with a buddy. Or having literally nothing on the schedule.  

Rest is something that is so vital for us to remain or get into a healthy place, but it feels impossible at times.  So how do we make it happen?  

We have to Plan & Protect it. 

I don’t know about you guys, but nothing LITERALLY NOTHING important gets done unless it is on my calendar. Especially not something that is for me and me alone. No matter how vital something is to me I will push it off to meet the more urgent needs. But if I fail to take care of my needs it leads me to a thin place and then things start to unravel.

 Rest for me started when a friend offered to watch my daughter 1 day a week for a few hours. It meant I had to let go a bit, trusting my friend to take care of my complex (then seizing) kiddo. At first it felt awkward setting aside those four hours to myself every week to not get things done, but to instead bring fresh air to my overwhelmed life. Then it became a habit. It became a time I relied on and resulted in me coming back as a better mom, wife and woman. Over the years it has transitioned to my husband allowing me the time every week and me doing the same for him. But we have to start by planning and protecting it.

God did not design us to work endlessly and then fit in rest at the end if possible. God created man on day six. And then day seven was a rest day. THEN, only after a day of rest Man set to work in the garden. 

How would our lives change if we committed to scheduling a block of rest time- something that is life giving every week and doing it- and then working from our rest instead of resting from our work?

Written by Laurisa Ballew

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. 

4 Special Needs Parenting Reminders from a Deranged Robin

Special needs parenting reminders came thick and fast when we were raising a son with major medical issues. But he overcame his health challenges, became an adult, and flew the coop long ago. These days, special needs parenting reminders arrive in strange ways.

One example is the deranged robin who appeared on our deck as winter surrendered to spring. One morning I heard a thumping sound, like someone was tenderizing meat on the kitchen counter. But none of the cooks who live at our house were around. I shrugged, arranged my computer and materials at the table in front of the glass doors leading to our deck, and began to write. A few words into my first sentence, the thumping began again. I glanced up to see a robin smack its beak on the window glass, fall onto the deck, shake its ruffled feathers, and charge at the door again. And again. And again. All morning long.

From that day on, the deranged robin showed up as soon as the sun hit the glass doors. It attacked the door until the sun moved and the eaves cast a shadow on the glass. Between its first appearance and the solution that finally sent it packing over a week later, that deranged robin provided several special needs parenting reminders I'd like to pass along to you.

Reminder #1: The Simplest Solution Is Often Best

We assumed the robin was charging at its own reflection and piled boxes in front of the glass from the inside to block it. When that didn't work we put a deck chair in front of the glass door on the outside. Next we sent the dog out to guard the deck. The dog got bored and wandered off. We enlisted our 4-year-old grandson for the same purposes, though we posted him inside the door. He got bored and eventually wandered off, too.

Finally my husband examined the other glass door panel, the one the robin left alone. The only difference was an outside screen door–actually two screen doors, since the screen for the one the robin kept attacking had been tucked behind the other screen for the winter. My husband slid the extra screen door over the robin-pecked glass panel. Just like that, the problem was solved.

By simply observing our kids, by looking for what's different that could be causing behavior or health or learning problems, we may discover a simple solution, too. If the solution doesn't work, we can move on to the next one without wasting a lot of time or money.

Reminder #2: We May Never Know Why the Solution Works

My husband and I have no idea why his solution worked. Even so, the problem has been solved. This reminded me of times when we found ways to soothe our child or ease his pain and had no idea why our efforts worked. And that was okay because we didn't need to know why. We just needed it to work.

Reminder #3: Clouds Contain Their Own Blessings

I was hungry for sunshine this spring. But sunny days led to hours of deranged robin thumping. Not so for cloudy days. I appreciates the reprieve of cloudy days and was reminded of how our son eventually outgrew snuggles and hugs. Except when respiratory viruses kept him home from school. Then he wanted to be held and rocked. I relished those rare, fleeting times, and appreciated the blessings of less than optimal circumstances.

Reminder #4: Let Nature Do Its Thing

Our deranged robin left a lot of bird poop behind. Once we were certain it was gone, I wanted to spray the deck clean with a hose. But doing so meant asking our daughter and her family to clear everything from their patio area directly under the deck. Since rain was in the forecast I held off a few days, and the rain washed everything clean. I remembered how I wanted everything fixed immediately when our son was little. But the fastest solution wasn't always best. Often, the best solution required letting nature take its own course for his healing and restoration.

As you care for your child, I hope these special needs parenting reminders from a deranged robin make your day a little easier. Happy spring!

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. The book she is co-authoring with Dr. Gary Chapman, Sharing Love Abundantly in Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, will be released in August of 2019. Her blog for parents raising children with special needs and disabilities can be found at www.DifferentDream.com.

 

Dear Mom Of The Child Who Will Never Say, "I Love You",

I have often heard it said that being a mom is a thankless job. With all that moms do, I tend to agree that they are often not shown the appreciation that they deserve. More than 60 countries around the world have set aside a day to celebrate mothers. In the United States, tomorrow is Mother’s Day!

In homes around the country, moms are being treated to gourmet breakfasts in bed. This often consists of their child’s favorite foods ranging from the always delicious chocolate covered cereal to toast and ketchup, which tends to be more of an acquired taste. They are being presented with beautiful dandelion bouquets and sweet cards saying, “I love you.” 

Dear Mom of the child who will never say, “I love you”,

Today I want to talk with you.

On this Mother’s Day your child will not whisper, “I love you” and you would love it if they brought you a breakfast of chocolate covered cereal.

Instead, your day will look very similar to yesterday. You may be in survival mode. Your child may be in meltdowns after trying to attend that special Mother’s Day service at church. Instead of smelling flowers, you may be smelling dirty diapers as you clean your teenager.  

Know this, while your child cannot say it in so many words and they may not know the joy a hug brings to you, they do love you. 

It has been said that, “Actions speak louder than words.”  

In our recent podcast, we interviewed Jason and Sara Hague. Sara shared that a pivotal moment for her was realizing that she needed to treat everything her child did as communication.

Are there behaviors that only you see? Do you have days when your child appears to do great socially but collapses in tears when they get home? Are there times when your child clings to you after the smallest change to their routine? Maybe there are times you are craving a break but your child will not allow anyone else to take care of them except you.

Through their actions your child is communicating that they trust you like they trust no one else. When their world “falls apart” and change happens, they cling to you because you make them feel safe.

If actions speak louder than words, then please know that in their own way your child is shouting, “I love you!” on this Mother’s Day.

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.

10 Easy To Setup Sensory Activities Part 2

Let’s be real. Sometimes those moments when the kids get home from school can be extra stressful. Having a plan and activities can provide structure and help relieve some of that stress. Cathy Porter shares with us 10 sensory activities that will help provide structure and help your child(ren) decompress after a day of school. If you missed the first 5, you can find them here. These 10 activities are quick to set up, low budget and easy for parents to implement!

6. Checking pens and pencils –this might sound a bit ridiculous but sometimes handing my girls a big handful of colored pens and some scrap paper and asking them to test the pens to see if any need throwing out works really well. It is repetitive, allows for satisfying sorting and some doodling or angry scribbling!

7. Coloring – This is a great go-to in our house. If no coloring book is on hand I grab any paper – or the back of an envelope, draw a tangled loose scribble and invite them to find and create a different pattern in each space that has been created. This can be done with just one pen if need be, they get inventive with dots, dashes, wavy lines…

8. Soft indoor ball – when you need to be quick and easy, and occupy more than one child on the edge at the same time indoor is often needed. A soft, sponge ball (kept with our shoes) can be thrown up the stairs and watched as it gently and methodically bounces back down. It’s not too loud, not too physically demanding and can be repeated over and over. It can also be thrown at a wall and caught over and over. Or can be rolled from person to person. This is very repetitive – and not my personal favorite, but works well some days.

9. Animals –we have pets in our family life, partly because our girls respond to animals so readily. They often bring instant visible calm. Bringing a willing pet to them for a cuddle when they need to regulate is worth all the day to day time it takes to care for them.

10. Marbles – over the years we have grown quite a collection. We keep a whole load in the living room on the bookshelf because they are such a useful sensory activity. They can be played with in water (plastic bowl), or on a tray (lovely sound if a wooden tray or dish), can be sorted into groups, are so tactile. They can be sent down cardboard tubes, or run down the middle of a large open book. They can be sat in amongst on the floor and can be simply fidget things for hands and feet.

What sensory activities does your family enjoy?

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

Planning For Transitions

“Hey Dad, I signed up to go to Destination Unknown with the youth group in a couple of weeks!” It was a Wednesday night, and these are the words our youngest son greeted me with as I picked him up from AWANA (the church program for the younger children).  “I’m sorry, what did you say?” was my instant reply.  My knee jerk response was to want to say, “No, you’re not ready for that”.

Instead, after he repeated what he said, I sat there slightly stunned. I could only manage a  weak, “We’ll need to talk to your mom about that when we get home.”

Sarah was just as shocked as I was. Sometimes change can be just as difficult for us as parents as it can be for our son who struggles with change. It’s not because we don’t want him to grow and keep moving forward. No, there is a fear of the unknown and how he will do.

With each transition and each new event, there is are a litany of questions running through our brains like the words of a teleprompter on a screen. Can he handle the extra stressors? Can he handle that long of a time without us being with him as a safety net? Will he know how to order food that he can eat if they eat out at a restaurant? How will he handle things when he is extra tired and stressed out? The list of questions goes on and then repeats itself over and over. 

Sarah and I talked. We prayed and we talked some more. Finally, we decided to let him go for it and see how it goes. However, we didn’t agree to let him go and then just cross our fingers in hopes that everything would go smoothly.

Sarah put on the proactive parent/advocate hat and put together a “What you need to know about our son” fact sheet for the youth pastor. On this sheet she included:

1. Food allergies

2. What situations he tends to react to more and other pertinent information

3. How he responds when he is overly stressed

4. Tips for the leaders on coming alongside him (which sometimes means giving him space) when he is overly stressed

Next, instead of just emailing the information to the youth pastor or trying to catch him after youth group or church, we set up an appointment to sit down with him mid-week and walk him through the information.  This allowed for a time when he wasn’t rushed and could ask any questions that he might have about how to handle different situations.

The youth pastor was happy to meet with us and was grateful to learn more about how to come alongside our son. This time we had together also served to boost our confidence in how smoothly this transition would go – hopefully.  

Each of you go through transitions with your children and each transition is different. What has been the most beneficial thing that you have been able to do to help your child transition as smoothly as possible?

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.

10 Easy To Setup Sensory Activities Part 1

In our house that bit of time just after coming back home from school is one of the real trigger points in the day. It’s a tired time of day for everyone, but my girls who have been masking non-stop all through the school day are simply beyond exhausted and in need of decompression and a chance to self-regulate.

I have found over the years that I need the quickest, easiest, least-stressful-for-me sensory activities on hand to provide us all with the best chance of navigating that hour straight after school. Once food has been offered and toilet break had, these are some of my favorites:

1. Cornstarch Gloop has the same appeal as slime. It is tactile, absorbing (if your child likes it) can be done in something as small as a cup – which then cannot be shared, which in this circumstance is useful. Simply mix cornstarch with a small amount of cold water and mix. Food coloring or a scent could be added but don’t need to be. Best enjoyed somewhere that can be wiped easily. Don’t dispose of it down the sink, leave to dry and then into the bin.

2. Sand - in the summer an outdoor sandpit with a cover is wonderful. But in cold or wet weather is not much use. Then I reach for a tray or roasting tin and pour rice or cous cous in which it can be played with, raked, pushed and poured. Toy animals or mini figures can be thrown in if on hand, but in a hurry I raid my kitchen utensils – measuring spoons, jugs, whisks.

3. Balancing – who can walk around the kitchen only walking on the lines between the tiles? Keep a string or a tape measure handy that can make a line on the hall floor to balance along. I have a fitness balance board kept under a chair in our living room that can be fetched out instantly.

4. Blankets – We have a selection of differently textured throws and blankets always on our chairs in the living room. They can be sat on, under. Wrapped around or cuddled. Some are furry, some smooth, some thick and heavy. Keeping them there all the time makes them familiar and quickly accessible.

5. Water – sometimes simply running a sink of water and grabbing some plastic cups and jugs is all that’s needed. In the summer having a water tray or table at the ready outside is great. Other times a cup or pot of water and a paint brush are an easier option – it can ‘paint’ on pavements, walls, driveways, garden chairs and skin (my youngest invariably paints her hands and feet and makes prints on the patio tiles).

To be continued…

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog: www.clearlynurturing.wordpress.com.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

Lets Journey Together, The Hope Anew Disability Podcast

Where are you at in this journey in disability and special needs? Are you the parent who is still searching for answers and trying to wrap your mind around this new diagnosis that has been given to your child? Maybe your overwhelmed with the day to day, the doctor appointments, the emotions that you are struggling with and the pain that you see your child in.

 Maybe you are the parent whose child is aging out of the system and you don’t know what lies ahead. Your friend’s children are going off to college and launching into their new lives, while you are trying to figure out what is next or who will take care of your child after you are gone.

Or are you the grandparent? You want to be able to come alongside your children more and support them but you don’t know how. Your grandchild eats a special diet, relies on special medical equipment that you don’t understand or maybe it is difficult for you to care for them because of challenging behaviors over which they have no control.  You see that your children just need a break but you don’t know what to do.

 Where are you on this journey? What is your story?

This journey can be isolating. It can be overwhelming and you can feel like you are completely alone. In describing how I felt, I used to tell people that I could live in the jungle in Papua New Guinea or in the middle of the city in Fort Worth and feel just as isolated.

Sarah and I began our journey in disability 12 years ago with the birth of our youngest son. He was allergic to literally all food, except sweet potato and on the severe end of the Autism spectrum. Our journey likely has looked different than yours, but we have probably wrestled through many similar struggles.

We would like to invite you into our home the first Monday of every month as we sit down with other families and professionals who have been on this journey and hear their stories and learn from their experience .

During our conversations, we will hear how they have found purpose in the pain and seen beauty in the journey. During this time you will be encouraged. You will feel like there are others who get it and you won’t feel quite so alone. You will experience hope, learn to build a different dream and be better equipped for the journey ahead of you.

You can join these monthly chats by searching iTunes for the Hope Anew Disability Podcast or by going to the Hope Anew website here: https://www.hopeanew.com/podcast.

We would love to hear from you! Please let us know if there is a specific topic you would like us to discuss in our monthly conversations or someone you would like us to interview.

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.

A Special Needs Dad's Thoughts About Heaven

Jesus answered, “I am the way and the truth and the life. No one comes to the Father except through me.” John 14:6, NIV

I have been thinking a lot about heaven recently. These thoughts bring up a variety of emotions. Since my sons have been born, I think even more about what it will be like in heaven someday with them. And with my youngest being non- verbal, it has me imagining it even more.

The Bible is clear that there is a lot to look forward to.  Many specifics about heaven are not covered in the Bible, but that doesn’t mean there aren’t some absolute truths: There will be rewards (Matthew 5:12); we will get new bodies (Philippians 3:21); there will be no tears or sadness (Revelation 21:4); sadly, not everyone will be there (Matthew 7:21)!

What does this all mean for God’s children who have special needs?

I have to believe that if there is not a capacity for rejecting God’s gift, there will be no separation from God, in this life or after physical death.

Some people may be tempted to view special needs, illness, or disability as reasons to not believe in God. This issue is, of course, a small part of the bigger question of why bad things happen to good people. Again, I can’t claim to have the correct or full answer. Certainly, sin entering the world through the first people and continuing in everyone since (except Jesus) to the present day is part of the answer. Satan’s work is another part of the answer.

To me, though, the part of the answer that is easiest for me to understand and come to terms with is that what is important, lasting, and meaningful is not really about our time here on earth. One hundred years of life (on the high end) is nothing when eternity is considered. So it makes this time here on earth, however long that is, a training ground of sorts: The place to get to know God through Jesus in preparation of knowing Him fully later.

So these special needs are not permanent! This time on earth is short, as God makes clear through James: “What is your life? You are a mist that appears for a little while and then vanishes” (James 4:14b, NIV).

As many parents with special needs children must imagine, my thoughts of Luke being fully healed are comforting and joyous ones. Seeing him in his new body, but still clearly being my “Luke”, having a LONG conversation with him, and seeing him full of peace and joy is a great vision for me. I like the idea of a line of people waiting to talk to Luke, to have conversations for which they have waited a lifetime. I see his grandparents and uncle giving him a big hug and asking him what he thinks about all kinds of things. I see his big brother, Brandon, laughing and playing with him in a whole new way without having to worry about him. I see his mom looking happier than she ever has, connecting in a new way with her boy as they walk along the beach. And I see me with Luke doing things we have not yet been able to do, like going for a run and working out together, going on a campout, listening to his jokes. I’m hopeful we might be able to do some of these things during our time here on earth, but I’m confident we will be able to do these things during God’s eternal life.

Discussion Questions:

1. What do your visions of heaven include? Are they consistent with Scripture?

2. Has your thinking about heaven changed since having a loved one with special needs? If so, how?

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This article is a shortened version of Michael Abb’s writing in Life On The Spectrum. To read more from Michael and the other authors of Life On The Spectrum check out www.lifeonthespectrumbook.com or order the book below.   Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Their honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.

Buy on Amazon

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Mike Abbs, who graduated from University of Illinois-Champaign/Urbana with a psychology degree, has been a police officer for 23 years. Currently he is a police lieutenant, and he served on the SWAT team for 18 years. When his wife Deb isn’t asking him to write vignettes, he enjoys spending time with his family, eating healthy,  physical fitness, playing fantasy football and watching old movies.

As an Amazon Associate, Hope Anew earns from qualifying purchases.

Warrior Parents

The Lord will fight for you; you need only to be still.

~ Exodus 14:14, NIV

I really should have taken up kickboxing, or just plain old boxing, or something involving a punching bag. I guess I still could. If I’d known all the fighting—or what some prefer to call “advocating”—I would need to do for my son Luke, I just might have.

Luke had just turned three when he was diagnosed with autism, and that meeting with Dr. Davis, the neuropsychologist, was devastating. My mom came with me that day because Mike had to work, and I remember how mom and I wanted a plan: “Do XYZ and he will get better.” The doctor did give us a plan that included preschool through the school district, Applied Behavior Analysis (ABA) and speech therapy (Luke was talking at that point), but she said it was hard to say what the results would be. After many tears on my part and much reassurance and what I thought was denial on Mike’s part (I was wrong about that!), I hit the ground running. ABA, check. Special needs preschool, check. Speech therapy, check. Back then I didn’t realize that becoming a warrior parent would be required.

Instead of gaining more speech (he had about seventy-five words and some two word phrases from age two to about three), Luke began losing speech until we were down to one word: More! And then that disappeared too. He’s non-verbal now although we do hear from him occasionally. When he is mad, we often hear a loud “NO!”

Luke’s experience in our school district’s early childhood program was awesome. We were so thankful for his team there and that they had a class specifically for kids with autism. So kindergarten came as a complete shock—and not in a good way.

Before school started that fall we set up a time for Luke, Ana (his home therapist) and me to visit the classroom. This was a classroom specifically for children with autism and it was run through a co-op of another school district. His room had a new teacher. I knew we were in trouble when his teacher said, “I’m so glad you brought me this information. I really have no clue what I’m doing.”

Um. What? Come again?
And I’m sending my precious boy to your class, why?

It turned out to be a place where Luke and the other children weren’t taught anything. Where none of the plans were followed, no IEP upheld, and no data taken. So it was time for some fighting on my part. And I wish I had stepped in the ring sooner.

Finally, in February, after a tip from a friend whose son was in the same class, we hired an advocate and got him out of there. In April of his kindergarten year, we placed him at a school for students with autism called Giant Steps, for which our school district pays. It’s a much better place where the staff is actually trained in how to work with folks with autism.

But this didn’t mean my fighting days were over.

One of the hardest, most emotional battles to fight can actually be with our churches. Thankfully, our church is growing in the area of special needs ministry, but not without tears and struggles littering the path. It hurts.

Jesus reached out to those on the margins. He spent time with them, healed them, and had compassion on them. Each of His children is an important part of His body, and He wants them to be able to use the gifts He has given them. When His children with special needs are missing—in some sad cases even asked to stop coming to church—His body is incomplete. It’s a huge mess and really tough when the church is slow to follow His lead. When the families who need extra support and love are rejected, it makes me so mad and so sad.

I love the television show “Parenthood”. Kristina Braverman, one of the characters on the show, has a son, Max, who is on the autism spectrum.

Watching one episode, I got teary when she said this about caring for a child with autism: “What works for some kids doesn’t work for all kids. . . . I feel like the system is broken. . . My husband and I have fought the system time and time again to make sure he gets what he needs, that he’s not overlooked. . . . My son, Max, is a fighter. . . . On behalf of Max, I’ve become a fighter, too.”

For those of us whose loved one is nonverbal, I think we feel what Braverman describes even more acutely. Since Luke can’t talk and tell me what is going on, it’s a huge act of faith to entrust him with others, when I’m not with him. If I find out that something is off in the way he’s treated, my mama-bear response can be quite loud and aggressive. But isn’t it true that we stand up for those we love, just like God fights for us?

When I remember that the Lord fights for me, it’s an immense help as I do battle for Luke, both inside and outside of the church. The Lord fights for us. As Moses led the Israelites out of slavery, they were terrified that the Egyptians were pursuing them. Moses reminded them to stand firm because God would fight for them. And He did! He used Moses to part the Red Sea so that the Israelites could escape. If you have time, take a moment and read all of Exodus 14.

Jesus is the one doing battle for us and our special needs loved ones. We are not duking it out on our own, even if it feels that way sometimes. He is in our corner, and He has not forgotten us. We are not alone in the fight.

Thank you, Lord, for that!

Discussion Questions:

1. Have you had to do battle for your child on the spectrum? If so, how has it changed you?

2. Is it easy or tough for you to remember that the Lord is fighting for you and your child/children? Why?  

3. Re-read Exodus 14:14. What do you think it means “to be still” in this verse?

This article is a shortened version of a chapter Deb Abbs wrote in Life On The Spectrum. To read more from Deb Abbs and the other authors of Life On The Spectrum check out www.lifeonthespectrumbook.com or order the book below. Because no two people with autism are the same, Life on the Spectrum’s authors all bring their unique perspective and experiences to the table. Their honest, raw and heartfelt stories show how God is at work in the real-world struggles of families impacted by autism.

Buy on Amazon

Written by Deb Abbs

Deb, who graduated from University of Illinois–Champaign/Urbana with a degree in journalism, works as a freelance blogger, as well as a disability ministry coordinator for InterVarsity Christian Fellowship in Illinois and Indiana. Her writing has been featured in several magazines and she was a columnist with the Kane County Chronicle.

She also contributes to Key Ministry’s blog and is one of the administrators of the largest online special needs ministry leader forum, with over 1,000 members.

She lives in the far western suburbs of Chicago, Illinois, with her husband, Mike, their two sons, Brandon, 18, and Luke, 14, plus a crazy English bulldog named Crystal. When not otherwise occupied you will probably find her with her nose buried in a book.

As an Amazon Associate, Hope Anew earns from qualifying purchases.

Reframing My Goals For Celebrations

Whenever there is a special occasion or an achievement we love to celebrate together don’t we? Parties, nights out, large family gatherings. Cakes, candles and balloons. From cute 1st birthdays, through sweet 16, prom, exam results, new job, housewarming, weddings… it’s all mapped out like a lifetime dot-to-dot of celebrations.

Yet how hard it can be to join in with celebration occasions and get togethers when there are so many potential obstacles and triggers, too many impossibilities or improbabilities! When eating a meal is challenging, or when leaving the house is difficult, or chatting with people is too demanding. Or if a group of people is just too stimulating or noisy, or a health risk. Then celebrating the way that we think we’re expected to is just asking for a major set-back and upheaval, not the joyful treat it’s supposed to be!

Surely there’s a different way.

What if I could feel free enough to plan a personalized celebration for my children’s milestones and achievements? What if I could put to one side the expectations and start from the result I want to see.

I want to see my children feeling loved, special and relaxed – able to be themselves and to shine in their own strengths, able to feel comfortable enough to actually enjoy and take part in an activity with others. I want them to be comfortable and relaxed enough to be able to process what’s happening and to see how proud we are of them, not so overwhelmed and overloaded that they are on the verge of shut down or melt down.

I may have to be brave and allow myself to think outside the usual expectations. I may have to be courageous and give myself permission to do it a little differently. Perhaps to take a deep breath, acknowledge that it’s not going to be what I’d always imagined and that pulls on the heart strings sometimes, especially when there’s always an opportunity for comparison. I try not to notice the differences most days but when it comes to key milestones it’s nearly impossible to ignore.

Sometimes I feel a little grief for the celebration I’d always half imagined, had always assumed would be that way.  Different can feel really isolating and awkward, but different can also be wonderful. If I can find the courage to let go and step into new ways of celebrating together that my children can feel more relaxed and more excited about, different might even be better than I could ever have dreamed.

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog .

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

Dear Exhausted, Wrung-out & Frazzled Mom

Dear Exhausted, Wrung-out & Frazzled Mom,

I see you. I see you struggling to make it through the day, your child’s melt downs, the medical appointments, and the therapies. I see the desperation in your eyes. I see the heartache as you are alongside your child in the midst of their ongoing pain.

I see that you are on the verge of collapse and the idea of having to do one more thing overwhelms you. I see the loneliness as you feel alone in this journey. I see you slump your shoulders when someone mentions self-care and the guilt you face at the idea you need to take a break and your child doesn’t get one. I see you and I get it. 

Our inclination as parents is to keep on pushing. We push until we can’t push any longer. It’s not a badge of honor but born out of what we feel is necessity. The idea of taking care of ourselves just seems like an impracticality and can increase our feelings of guilt on multiple levels.

This weekend I was asked “How do I know when I should pause to take care of myself?” If you are reading this letter, then the time is now. 

When our youngest son was a year and a half my wife, Sarah, had a physical and emotional break down. She had been pushing and pushing, only getting a minimal amount of sleep each day. It was a Sunday morning when she broke down. Sarah who was not normally a crier wept all the way through the church service and all the way home. She cried herself to sleep, slept for 22 hours, woke up, cried some more and slept for another 17 hours.

The thing is, she didn’t wake up feeling refreshed and like she could keep going. She was exhausted. Her hormones were shot and today, ten and a half years later, her health is still struggling. 

As a husband and a father, I implore you to take that time now. Don’t wait until it is too late. Your family and your child need you there for the long term. Please take that time, even if it is only five minutes a day.

Self-care doesn’t always have to be something that is grand. Just five minutes a day is a good place to start. Take time to breath. Smell your favorite scented soap as you wash your hands. Eat a piece of dark chocolate. Lay in your bed with your headphones on and listen to your favorite song. 

Self-care is not an extravagance. It is not selfish. It is necessary. Please take care of yourself before it is too late. 

What are one or two things you can do today to take care of yourself? It is that important.

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.

Help!

My friend’s baby had been sick, and since I am a nurse (who thanks to my own daughters needs owns a suction machine), I offered to swing by and suction her baby. My friend declined, but later, when I offered again she asked me to come. Once I had finished and her sweet baby was able to eat better, my friend said “I don’t know why I didn’t just say yes in the first place, she’s eating better than she has all day. I guess maybe I didn’t want to bother you or ask for help?”  

I think we can all relate to this. When did HELP become a dirty four-letter word that we aren’t supposed to use?  I was never taught to NOT ask for help, yet it has taken me a long time to get on board with the reality that I live a crazy life and I NEED help. 

Needing help often comes with some kind of shame, a fear maybe that others might think I was weak? Or maybe I believe that somehow, I got myself into “this mess” so I don’t deserve help? 

Regardless, if you are reading this blog especially as the parent of a child with special needs… YOU NEED HELP. You are absolutely worthy of help. And while our kiddos can be more challenging, exposing them to people outside of ourselves is a huge benefit to all involved. It helps our kiddos have other adults in their lives that can love them well. It helps us carry some of the burden. I know from experience that caregiver fatigue is a real thing. What a gift to the people who get to know our kiddos. It feels good to help those around us, and by saying YES to the offers of help, it builds community and relationship. Plus, our kiddos are amazing even with the hard, and the world NEEDS to know them. 

When someone asks what they can do to help me I sometimes don’t know where to start. It gets to a point in this chronic life that it feels like more work than relief teaching someone about our lives. But I promise that it can be worth it. And maybe that means I say YES when someone offers a meal, or I say YES when the neighbor asks if she can pick up my other daughter from school. When I find myself saying “I can do it” I am learning to pause and say, “Yes! I would love the help.” It might even mean me reaching out to friends and family and ASKING for help, because I have now realized I am worthy of needing help. 

I was so grateful to help my friend. I had the time to make it work, and I was truly blessed by getting to serve them.  

Written by Laurisa Ballew

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. 

Why, God, Did You Fail Me?

My one-year old son had been sick since he was three weeks old: screaming, writhing, projectile vomiting every time he ate, anal fissures, bashing his head into hard surfaces, rashes, not sleeping for more than twenty minutes at a time, and more. My husband, myself, and our now three year old son had moved across the country the year before with our work as missionaries with Wycliffe Bible Translators. In our assigned location of Arlington, Texas, we had no friends, family or church connections upon our arrival and our youngest son’s health issues kept me mostly homebound.

I had grand dreams of the ministry work we would do and the global impact that we would be a part of through our ministry with Wycliffe. The reality of life was a far cry from that. I rarely left the house, couldn’t build friendships, and caring for our sons was so all-consuming taking 20-22 hours out of the 24 in a day, leaving only two to four hours for sleep. I was barely functioning, let alone reaching out to the rest of the world with the Scriptures.

As the days turned to weeks, the weeks to months and the months into a year and more, I started questioning God, His involvement in my life, His care of me and my family, His care for this world and the fight of good versus evil within it. In short, I had a crisis of faith and I learned six paradigm shifting lessons over the next several years as I worked through these and other questions. 

1. Suffering can lead to a crisis of faith, even if you are (or thought you were) fully submitted to God’s will and to serving Him.

2. Even ministry leaders will struggle in their faith and will question God. 

3. You can be faithful and obedient to God and life may not go well for you. I was serving God obediently and faithfully. Why was He failing me?  

4. God’s goodness and care doesn’t stem from our perspective or what He does or does not do for us in this life. God is God and He is good, regardless.

5. God not “fixing” a situation does not mean He doesn’t see us, has abandoned us, or isn’t good. Fixing it is just not His plan, at least not for now.

6. |\In the process of questioning and wrestling with God, we will get to know Him better – for Himself, as He truly is, not as we have been taught about Him, but Him.

My faith was shaken to its foundations and I questioned and wrestled with God for several years as I worked to rebuild it. And in the rebuilding, I found a God who loves me, even when I doubt or don’t achieve. I found a God who is bigger and more mysterious than I knew. I found a God who wants me to be more like Him and who wants to purify my heart, motives and beliefs, even though that process may cause me pain (which also pains Him) and may have caused some distance in our relationship for a time (which also pains Him). I found a God who is the definition of unfailing love. He is love and I am His, regardless of life circumstances.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and 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.

"ETA Tonight?"

 Do you ever get loving texts from your spouse at the end of a long day? I sure do, in fact, my wife is great about it, and many times they include truly heartfelt sentiments, such as “hope you had a great day”, “love you and grateful for you”, “thank you for all your help”. My favorite, however, is the most simple of all, and one I received the very night I’m writing this: “ETA tonight?”.

 It just so happens to be a work night for me, which being a teacher during the school year, are both dreaded yet extremely needed, however it can put stress on my normally love texting spouse, especially since it means she’s the one taking our special needs child to one of a million therapies.

 Of course, it always seems like there’s a million therapies on the calendar, and from the beginning of the school year there are always multiple competing calendars. There is one for my school year, one for my fellow teacher spouse, and one for my son, both for school, and for the million after school therapies.  Just thinking about it makes me shiver, and I can’t help but wonder when my next legitimate break might be, but I can’t get too distracted, because I’ve gotten that most heartfelt of all texts... “ETA Tonight?”

 Let’s be serious, we all treasure the moments of space and quiet we get in those select few times. Currently, as I sit in the relative solitude of our local public library, a comfortable chair and work table facing a window with a view of the local creek that meanders through our town, cup of coffee at the ready and wifi stream overflowing, I consider how wonderful this is...for me. But then, the loving text about ETA rolls in, and I’m reminded, first of all, of the reality of the time I have, which is not very long.

My focus then turns to my wife, who is at home tonight with our son. She is at this very moment helping to get him to bed. This means going through all of our nightly rituals, beginning to fight the good fight to help our son go to sleep, but without me. Then I begin to think, does she need some help, is my son not in a great mood tonight and is she taking the brunt of his anger and frustration. Is she at her wits end and needing me to come to her aid?

 Slowly, I take a sip or three from my cup. I close the riveting binder of math curriculum I was excitedly working on. I stopped thinking of myself, and instead thought of my spouse, and my son, and how that simple two word phrase texted to me is enough to get me to move out of my comfort zone, and in doing so, bringing comfort to those I love.

Written by John Felageller

John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently an Elementary Teacher at a Charter School in Chicago, IL.  He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.

 

Connect with John on his Facebook page here.

Connecting With Your Children When There Is No Time

Life can be really full on can’t it! With all the phone calls, appointments and forms that need filling in. Then there’s the planning and support needed for all the everyday things that need doing, and places that need going to. Add to that the constant worries and wonderings about small things like health, friendships, discipline, eating. You know the kind of small details I’m talking about! Life can be so crammed full that it is hard to find time to simply be with my children, and have that time to really connect.

I love to find hobbies or projects that we all have an interest in, and have them ready to go (out in a corner of a room for as long as we can practically stand it) for those moments when either we have space together or those moments when we both need a welcome distraction from the battle over whatever it happens to be right then. It took a bit of time to work out what kinds of things, and it also took a change of attitude to the mess of it constantly being left out but after a while it was so clear to me that it was well worth it.

I had gotten so overwhelmed by all the necessary busy-ness of life that I had lost moments of laughter, of fun, and of understanding and appreciating each other’s strengths in the midst of it all.

We have found common ground in Lego projects, in art for bedrooms, in puzzles, in gardening, in Sims, in crafts. Lately my youngest and I (often joined by my eldest too) have been working on a project to build a dolls house for her 14 inch doll. We have been having fun trying to repurpose all sorts of bits and bobs we have in the house. We have been taking our time and chatting as we go. AS clothes and furniture, wallpaper designs and garden spaces have evolved, we have adored it together. It may not be perfect but it’s been a wonderful process, worth all the mess and the saving of the recycling.

The thing is I never actually have time to do these things, but somehow when they are ready to go we can find moments to dip in and out of the project together.

It’s such a simple thing but something I am increasingly thankful for. Positive time together with my kids is just so needed, for them and their well-being and also for me as a parent under pressure. Doing something together that our strengths and talents can shine through is a wonderful thing, especially when so much of the day to day feels like a battle, and so much of the admin and appointments focuses in on the weaknesses and areas that need support.

What do you enjoy doing with your kids? My husband finds very different projects to be common ground. Whatever it is, be encouraged. Yes, you and I are busy with so many things but moments of busy enjoyment together are never wasted. 

Written by Cathy Porter

Cathy Porter is  a disciple of Jesus, a mum, ordained and a vicar's wife (in the Church of England), a writer, a creative, a blogger.

Cathy and her husband, Andrew, have 3 children. Her two girls both a diagnosis of ASC. You can follow the ups and downs of family life & faith on her blog.

It is Cathy’s heart to encourage families to share in the adventure of faith together, especially families beautifully shaped by ASC. She loves to write stories that make the reader think, ask questions about what we believe, and help the reader to discover what the Bible has to say about God and friendship with him. 

YOU ARE INVITED

This morning I started a new devotional that was put out by Wycliffe Bible Translators. In the devotional, the author depicts a banquet scene. In this scene there is a long table, name cards at each spot. The silverware is polished and the candles are flickering.

The story goes on and you find yourself seated next to people from various countries and you have a very enjoyable conversation. Each person sharing their hopes and dreams.

This reminds me of another story in Luke 14. In this story there is also a banquet. A man prepared a great feast and sent out many invitations. When the time for the feast came, everyone declined for various reasons. The man then sent his servant out to the streets and had him invite the poor, the crippled, the blind, and the lame!

To hear this story in full, check out this video done by Hyatt Moore with Joni & Friends.

Many of you struggle with isolation and feeling like you are included. Friendships become more difficult and some may fade. Social events are harder to attend. and even going to church can be a challenge. Some of you may feel like you are a burden and that while you are invited, you are not really welcome.

The incredible thing is that Luke 14 is not just a story. It illustrates our heavenly father and a banquet that is yet to be. A grand banquet like no other, where those who know Him will gather and rejoice. This is a banquet where our children are not just invited but welcomed with loving arms and there won’t be a critical eye in the room.

In the story from the devotional written by Wycliffe Bible Translators, we are seated by people from different countries. We are rejoicing and celebrating with them.

Have you ever thought about who the first person you would want to talk to would be once you get to heaven? One father I talked with shared how the first person he wants to talk with is his son. He is looking forward to that day when his son, who is currently in his 30’s and nonverbal, can voice all those thoughts that are going through his head and they can get to know each other on whole new level. Can you relate to this?

I write this because sometimes we need a reminder that things in this world will not always be the same and someday those who know Christ as their savior will be in heaven with Him!  

Until we get to heaven, on those days you are struggling, remember that the same Father who is preparing a banquet for you in heaven is with you and your child in the day to day. He knows your pain, He knows what is going on, He loves you and wants hear from you.

“He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain. All these things are gone forever.”

 ~Revelation 21:4 (NLT)

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.

Finding Purpose In The Pain

Have you ever been heartbroken at the extra pain and the struggles your child is facing? I get it. The doing everything you can for your child. The wanting to be able to do more. The helplessness, the weariness from always pushing, always looking, always being on.

Viktor Frankl survived four concentration camps in the Holocaust and developed his own system of psychotherapy. At the core of his therapy, he felt people were searching for meaning. More than six million Jews died during the Holocaust.  Viktor  believed that those who survived seemed to have a meaning and purpose in their lives. They had some goal that was beckoning them, something they wanted to do, some project they wanted to finish. It may have been as basic as living so others outside the camp would know the atrocities that were happening.

While I don’t agree with Frankl on many things, I do agree that we are searching for meaning.  When we see our children struggling, it creates an incongruity in our hearts as we try to find meaning and purpose in what they are going through.

When we were in the worst of it, I would have struggled to personally share how there was meaning and purpose in this journey of disability that we were going through. I could give the church answer of God is using this to bring glory to Him, through my response and how I treated my family (which is true) but  beyond that, I couldn’t understand what other purpose there could be in this journey.

Last week was our youngest son’s birthday! He turned 12 years old and we had a wonderful day of celebration. We started the day off by going out for breakfast, just he and I. I was able to find a restaurant that served breakfast food that he was able to eat. We talked, we laughed and I reflected.

How could life change so much in twelve years? This persistent, out of the box thinker has completely changed the direction of our family. I still remember rocking him on my chest as he cried and screamed through the night, me trying to give Sarah a break. I remember the joy of finally hearing a few words come from his lips, and the agony of his losing those words later.

I remember relinquishing dreams that I had for him and our family as he grew. I remember how this journey slowly shaped and changed my heart. I grew from thinking I could help people who were struggling because I had been trained to, to having an intimate knowledge of what it means to be helpless and broken. The list of how this young man has changed me could go on and on.

God has already used this young man to accomplish so much, and I know without a shadow of a doubt that God still has much more that He is going to accomplish through him.

Some of you may be in this place trying to figure out the purpose in your child’s pain. As you struggle with the incongruity, remember these truths:

• God is good (Psalm 145:5-7)

• God is sovereign (Proverbs 19:21).

• He personally knows your pain (Psalm 56:8).

“You made all the delicate, inner parts of my body and knit me together in my mother’s womb.”

~ Psalm 139:13 (NLT)

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.

When You Can't Make It All Better

My precious son was writhing in pain, screaming, bashing his head, couldn’t talk and tell me what was hurting or what was going on. He wasn’t hitting developmental milestones. He got sick for three weeks at a time if I took him out in public once per week for church. He would meltdown if we went to a store, if I put my hair in a pony tail, if a car-carrier semi drove by, or any other of seemingly 100 other reasons.

I was heartbroken by my son’s pain. I wanted it to stop. I wanted to take it away. I was heartbroken by the trapped world my son lived in with a body and brain that didn’t function normal or well. I wanted to fix-it. I wanted him to be set free. I wanted to know who he really was, not just the altered state of pain, agony, confusion and misunderstanding I saw in his eyes daily, on the days he was “there” and not “absent”.

I hear from other moms with similar feelings. Kim’s 13 year old son is still wetting the bed and she doesn’t know how to help him. Anne’s 5 year old son, who was severely injured at birth, needs 24-hour home nursing care while another son is a danger to the family and has needed to go live in a group home. Christy doesn’t know where to turn for her adopted daughter’s unknown trauma and personality disorders. Tiffany’s daughter is scheduled for her 23rd surgery. Their children are in so much pain. They have so many challenges. They want to help. They want to make it better.

Are you there? Do you feel the pressure? Sometimes, the desperation? The pressure to help, to fix it, to make it all go away?

I’ve met moms of kids with disability and special needs who say their child is perfect just the way they are and they wouldn’t do anything to change it. I think their challenges must have been different than mine, because if I could have taken away the extreme amount of pain my child was experiencing, I would have in a heartbeat.

Dear pressured, desperate mom, here is a truth we need to grasp onto for dear life. These children are not ours. They are God’s. We are the stewards of this child for this lifetime, but ultimately, they are His.

He created them. He gave them to us to love, guide and care for them. He has a plan for them. When we feel this pressure to solve, to help, to fix and we cannot or don’t know what to do, we must bring the child (along with our pressures and worries) back to Him, lay the situation in His lap and ask for His help, guidance, insight and intervention.

You, dear mom, don’t need to carry a burden He never intended for you. So, give that part of it to Him, that’s His job. Yours is to love well.

Written by Sarah McGuire

Sarah McGuire  is the Mom of two boys and 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.

The Dad Coin: Inspired To Encourage Others

I recently became acquainted with a businessman who started an organization that supported special needs dads through a mentorship program and various other resources. I was excited to have become connected with him through a mutual friend, but was truly excited when he invited me to a board meeting for the organization to hear their ideas and get my opinion about how to successfully reach more dads with their programs. I traveled downtown to his office where I was personally escorted up to his floor, and there was welcomed by him and several of the other professionals who contributed on the team, and treated to a nice lunch.  

During the meal, I was introduced to the program and how it was structured, and the founder put forth both ideas but also questions about how it could be improved.  I was glad that I was able to share my own unique perspective as a special needs father, but also as a teacher and someone who has worked with parent and life groups for special needs families as well.

After the meeting, I stayed to speak personally with the founder, and we had a wonderful opportunity to share our lives, goals and visions for how to better support families like mine, specifically the fathers. Towards the end of our conversation, he presented me with an envelope, and tucked inside was a “merit coin”, similar to what those in the military or police force would receive.

He explained that this was an idea he had developed to honor special needs dads, and this would be given solely for the work of being a good father to his special needs child, everyday, all the time in all facets. He said that he gives them out at a variety of events and will many times pick someone randomly from a crowd, but he said the most important part of this gift was how it was given to the father, with a handshake, holding the coin inside the palms of both hands. As he shook my hand and gave the presentation, I beamed with pride and emotion.

I realized right after he had passed it on to me, that this gift was not so much about me, but about me doing it for another. I had been given more than just an award for my good parenting, I was also given a template for how I might lift up another father with my words and actions, and what it could mean to another, especially in times of hardship and struggle.

I now carry the coin with me everywhere I go, and know what a great gift it truly is, as it can serve as a reminder for me in my own times of stress and doubt, but also a light for another, when they are in a dark place, I can share hope for them, that they might be who they are meant to be.

Written by John Felageller

John lives in Northbrook, IL with his wife Elizabeth and his son Christopher (ASD), and is currently an Elementary Teacher at a Charter School in Chicago, IL.  He is a regular contributor to Key Ministry’s Special Needs Family blog, and is both a live presenter and on Key Ministry’s Facebook page. He coordinates a Special Needs Dads meet-up in his community and works with several other local Special Needs organizations that serve both parents and children.

Connect with John on his Facebook page here.

Four Ways To Cope When You Are In Survival Mode

How do we think about the future when we are living in so much chaos? Do you ever feel like you are living from one moment to the next, just taking one more breath and trying to put one foot in front of the other? Sarah and I have been in that place of just being in survival mode. Many parents that we talk to also find themselves there, in that place of just trying to make it through the next second and where making it through dinner qualifies as a long range goal.

 There was an eight day study done on mothers of adolescents and adults with autism. At the end of the study, it was found that their stress levels were comparable to combat soldiers! Some of you just breathed a sigh of relief when you read that. I know this study personally resonated with me. It was a relief to know that I am not weak and I so identified with the picture of a combat vet in a war zone.

Common symptoms of combat stress that soldiers experience are:

• Hyper-startle (An exaggerated response when something surprises you)

• Hyper-vigilance (Being always on guard or super-alert)

• Trouble with focus and/or memory

• Flashbacks (re-experiencing stressful events)

• Hallucinations (seeing, hearing or feeling things that aren’t real)

• Nightmares and trouble sleeping

• Depression and apathy

• Guilt and shame

• Withdrawing or avoiding others

• Irritability and angry outbursts

• Headaches and exhaustion

• Extreme anxiety (excessive fear and worry)

Do any of these sound familiar? If so, how many? Maybe some of these things have become so ingrained in you that you have just taken it for granted that that is who you are.

Hyper-vigilance became a way of life for us, beyond just being a helicopter parent. Back to that image of being a combat vet, Sarah often described our marriage after our journey in disability began as the two of us being in a “fox hole” together as we were constantly on alert and fighting for our family. 

In an article in Navy Medicine Live, it was shared that if not addressed, these symptoms can morph into something else, like PTSD or substance abuse.  

So what do we do when we struggle with one or more of the above symptoms?

First, implement a self-care plan.

Yes, I know  you already know this but have you done it? Stress negatively effects every one of our body systems and leads to ongoing health issues. In this video, I share 5 things anyone can do as they implement their own self-care plan. You can also send me your email address and I would be happy to send you a free e-booklet I wrote with the same information.

Second, as much as possible, implement a routine.

On average, adults are making 35,000 decisions a day. By eliminating some of those decisions through having a routine, you will be better equipped to handle the big decisions and the “surprises” that frequently arise. What are some decisions you can streamline?

President Obama was a fan of this. He once shared, “You’ll see I wear only gray or blue suits. I’m trying to pare down decisions. I don’t want to make decisions about what I’m eating or wearing. Because I have too many other decisions to make.”

Third, find a community or select group of friends who “get it”.

Commander Carrie Kennedy a neuropsychologist and aerospace experimental psychologist shared that the real key to effective management of combat stress and long term adjustment was that veterans have to be in regular contact with other veterans.  Veterans need to be able to talk over difficult  experiences with members of the same unit.

 If you are unable  to find that group who “gets it”,  Hope Anew wants to help. We are in the process of building an online community that will launch later this year. This community will be a “laugh together, cry together, pray together” community. It will provide you with those connections who you can be real with and who will get it. If this something that interest you, again message me and we will be sure to let you know when it is launched.

Finally, as believers we have an eternal hope.

We have a Savior who loves us and we know there will eventually be a day where there is no more crying, no more pain and no more sorrow. As we long for that day, it helps to look for things daily that will instill hope and bring glimpses of joy.

You won’t be able to dream and plan for the future until you can manage the stressors of today. If you feel like you are just in survival mode, what is one thing from above that you can do today that will help with your stress levels?

 If the above symptoms persist, become worse or you begin to have self-destructive behavior or suicidal thoughts, please reach out to a professional immediately for help.

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 disabilities on a spiritual and emotional level.

You can follow Hope Anew on Facebook here.