Failure To Communicate

My son Jesse loves to imitate. He also likes to hear my husband do imitations. When Jesse was younger, one in particular that he wanted to hear over and over again was a line from the movie Coolhand Luke (which for the record, he has never watched- he’s only seven). Jason was always willing to play along because it made our son belly laugh so hard. I’m still not sure why, maybe it was the creepy voice.

“What we have here is, failure to commun-i-cate,” he would say, turning the words in his best southern drawl. The character in the movie, Captain, is a sleazy prison warden with a superiority complex. I’m both amused and cringe at my husband’s talent.

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The irony behind the movie line is that Jesse has delayed speech. He was born with hypotonia (low muscle tone) which affects his speech, along with other developmental delays. He began speech therapy when he was 23 months old. There were only a handful of words he could say, and even then we had a difficult time understanding him. I taught him basic sign language words to get by, such as: water, help, sorry, eat, bathroom, please, and thank you. At least he would learn to be polite.

Part of the struggle besides helping Jesse’s language was figuring out how much he knew. I had no idea what was sticking and what wasn’t. Teaching him about the Bible and Jesus was just as important to me as learning self-help skills. But I didn’t know how to do this. How do I reach him? We can’t even communicate beyond basic survival words.

At some point I realized that God saw the work I was doing to train my son’s heart. He knows exactly what Jesse retains. All I’m called to do is to stay faithful and trust Him. The Lord takes care of the outcome.

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I started singing children’s Bible songs complete with hand motions, playing worship music, and read to him very simple Bible stories. I’m not worried about whether he can memorize a catechism or multiple Scripture verses. It would be wonderful if he could learn these things one day, but for now we sing, “Jesus loves me this I know, for the Bible tells me so.”

Jesse will be eight next month. His speech has skyrocketed into sentences and even opinions! I believe he is learning more than I fully realize. But more than his current progress, I rest in confidence that the Lord has charge over my son’s heart. As a parent I’m learning my role as a shepherd. We can pray for our kids, disciple them, teach them our faith with words and by our example. But thankfully their salvation is not dependent on us. We have the privilege to join God’s work in communicating His eternal truths to our children. However simple or imperfect it may be, our Father can use our labors for their ultimate good and His Glory.

 

Grace upon grace,

April

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The joys and challenges in parenting a special needs child

January has been unexpectedly hard- and cold, but well, that one is to be expected.

We’re still settling into the “new house” as Jesse calls it. This doesn’t seem like home yet,  so we’re all a little displaced, since we don’t belong at our old house either. But I figure this will soon wear off and be a safe haven rather than feel like a guest in our own home.

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Along with that there have been particularly stressful moments recently trying to mother/referee Jesse’s rollercoaster emotions. Sobbing one minute and laughing the next, mixed in with a good dose of hyperactivity and whining tantrums.

It’s taken me off guard because it isn’t his typical behavior.

Is he tired? Should I change his diet? Special vitamins? Is this a normal part of growing up?

I can guess all day and go mad trying to figure out the solution- or better yet, the problem. He isn’t able to articulate all of his big feelings, so outwardly I try to calm him down. But inwardly I internalize.

Worry.

Stress.

Until the other day when Jason and I were attending to “new house” stuff I had chest pains. Normally I would shake it off (perhaps foolishly) but since I’ve had a run in with AFib there was concern. Each breath hurt my chest.

I’m fine now, but this pain lasted a day and a half-  soreness like maybe I pulled a muscle. Ironically Jason has had the exact same chest pain for 2 years. I did rest that day, just in case, but my fears of another heart problem were put at ease realizing he experiences the same thing.

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In fact, it makes sense now.

I’ve heard it said before that parenting a special needs child is on the same stress level as a combat solider. Well, I don’t know about that, but it serves up a great deal of learning challenges, misunderstandings, isolation, acceptance, self-help skills, and sleep deprivation.

This isn’t a sob story because goodness knows we have been tremendously blessed. I know that.

God has given us our son with a purpose. Some of the reasons I see so clearly and other times I do question why there are disabilities at all. It doesn’t seem fair. Looking at other cases just breaks my heart.

But here are two things I know:

One, I don’t want to ever pity another family with special needs children, but love them by being their friend. Enter their mess. Show compassion. Listen. I can’t understand the exact situation, but I can pray for them and even with them. This is what these families need.

To be heard. Seen. Validated. Loved.

Two, God gave me an amazing son who blesses others in a way I can’t fully understand. Sure he’s not perfect by any means but he loves cheerfully. My prayer has always been that the Lord will allow others to see His kindness and goodness through Jesse.

I believe God has honored this. 

My Father teaches me more and more and more patience when it comes to working with him. Jesse is the only extrovert in the family so he keeps me and Jason constantly climbing out of our comfort zones. God is inwardly refining my character, as well as showing me how to practice seeing others like Jesse does.

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This job is for life and I know there will be more joys and challenges with it. The joy is found by recognizing those moments as gifts and giving thanks. The challenges prompt me to pray more specifically and consistently.

Is it stressful? For sure. Is Jesse worth it? Always.

Knowing that God sees all even when no one else does helps me persevere. Jesus shepherds those that have young (Isaiah 40:11) and He will never leave me or forsake me (Hebrews 13:5).

I can rest in this, then take a deep breath.

 

Grace upon grace,

April

 

***I wanted to let you know that I have created an Instagram account just for this blog! You can find it here: @redeemedingraceblog . You can follow along to receive weekly encouragement, as well as the posts you already get in your inbox from Redeemed In Grace.

If you haven’t signed up for new posts to be emailed directly to you I think you should 😉 That way you can open it at your leisure, on the couch with a cup of coffee. That’s what I imagine anyway.

Thank you for being a faithful reader. You have no idea how much that means to me that you read these words the Lord has placed on my heart. My hope is that you are encouraged here. Happy reading and see you on IG!

 

The Life I Didn’t Expect

I found Meredith through Instagram, drawn to her heart in encouraging parents with special needs children. As a parent herself with a child on the Autism Spectrum, she offers her personal experience, compassion, and desire to champion for those who need an advocate. Welcoming another mama’s heart to Redeemed In Grace today.

Guest Post by: Meredith Dangel

***

I never wanted to write about autism.

My little family blog, which I started when seemingly anyone with an internet connection had a blog, was meant to document our days and stay connected to our far-flung family and friends.

I never wanted to be an advocate.

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You know the one, right? The attitude-bearing, button-wearing, walking bumper sticker that people avoid. I felt allergic to that. Honestly, I’m still allergic to that.

Yet, I am, without question, an advocate. I’d like to take you to the beginning, to share with you how God prepared me for this role, this passion, and this new career. The beginning, though, is my childhood and we don’t have time for that. I’ll take you instead to a feeling that was born inside me on the day a neighbor asked me a question about then 2.5-year-old Henry.

We didn’t know her well, but she was kind, bringing us a homemade cake just before Christmas and waving from her front porch whenever we pulled into the driveway. Standing in the front yard one afternoon, I shared how we were in the process of evaluating Henry for autism, but I was pretty sure the evaluation would be conclusive that he was, in fact, autistic. As she asked me questions about what autism means, I described it as best I could with just a few months of acquired knowledge. I’ll never forget what she asked then, not unkindly but uncomfortably: “So, they can learn the proper response to others’ emotions, but they don’t actually … feel it?” She gestured toward her heart as she said this.

***

I don’t know my exact response, but I remember fumbling. I tried to explain that, yes, they do feel, but my vocabulary was not yet nuanced enough to delve into the complexity of autism and the lack of empathy myth. On that day my effort to understand Henry, to support him with every resource Keith and I had to offer, blossomed into something more. I now wanted to help others understand too. I never again wanted to be stuck without words, to feel as if I had betrayed my son and those like him.

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The path I’ve taken isn’t for everyone and I would never assume it should be. God has nudged me into sharing my own story, educating others about autism, and even changing my career. To ignore Him and to hold tightly to the gifts I’ve been given would be a great shame. I often say if I don’t share my knowledge, I don’t deserve to have it.

Day by day, year by year, God has formed me into a person I didn’t know I could be. In parenting, I do seek advice and never stop learning, but I also trust my instincts. I am confident that I know my son and that a good and loving Father provides each day all that Keith and I need to parent him.

In both my private and public life, I take more risks (calculated and prayerful, of course) and worry less. Maybe that’s the exact opposite of what you’d expect from a mom of a child with a disability, but this part of my identity has made me braver than I ever imagined. For Henry and, most importantly, for God, I would do anything.

I would even wear a fundraising t-shirt. Maybe even a button.

 

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Meredith Dangel is a writer and speaker and soon-to-be mental health therapist who longs to encourage autism parents and empower all to see inclusivity doesn’t have to be difficult – it can be beautiful.

http://www.meredithmdangel.com/

https://www.instagram.com/MeredithMDangel/

https://www.instagram.com/mamaneedsamoment/

 

A Support System for Special Needs Families

I can’t imagine what life must have been like 50 years ago, or even 20 years ago, when autism was deeply misunderstood or virtually unknown. Did the parents feel isolated in communities simply because their child did not fit the mold? Some were accused of not loving their children enough, termed as Refrigerator Mother Theory, which has now been debunked as complete nonsense.

Temple Grandin, a well-known autism advocate and also on the autism spectrum, remembers this first hand. Her mother was told she must be too cold toward Temple, to explain her irrational behavior. This was the conclusion of a medical professional in the 1950s! Other parents who felt hopeless sent their children to mental institutions where they lived out the rest of their days. I don’t think it was because they didn’t love their children, but many had few options and lacked community support.

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Today is vastly different from a time not too long ago, and for that I am grateful. Unfortunately it can still be a struggle for parents with special needs children to relate or share with those living outside their world. Things get lost in translation. It can sometimes feel like an alternate universe filled with IEP meetings, therapy appointments, medicine, natural supplements, working with educators and doctors to make sure your child receives exactly what he needs. I get excited when Jesse sleeps through the night. We celebrate little milestone achievements, like putting two words together, where some might take that for granted especially at age 6.

The “special needs” jargon sounds foreign to someone not in your shoes. Not to mention the emotional developmental delay for most on the autism spectrum. An outsider might conclude your child is “behaving badly” and “lacks necessary discipline”. It’s true they may act differently than their typical peers with public meltdowns, lack of social awareness, or stimming behaviors just to name a few. However, we work toward good manners and accomplishing life skills, but it may take our kids longer to get there.

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Even though family and friends rally around to offer support, a missing piece of the puzzle is found in support groups, organizations, or families on a similar journey. Our stories won’t look exactly the same because no two diagnoses are alike, but there will be an unspoken understanding. And thanks to the Internet, families who live in rural areas can still connect with others who feel isolated themselves.

You don’t have to do this alone. Sometimes we go through trials to comfort another weary heart on a path we’ve walked a little further down. I still can’t fully express my life to someone without a special needs child, and that’s okay. Can it be lonely and frustrating at times? Yes. But then I have a conversation with a mom in the same boat as me. We share a bond. I have met amazing parents who relentlessly advocate for their children. They remind me what we all should do- be a voice for the voiceless. This applies to so much more than the autism community.

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Most of us desire to be understood, to form a connection with someone we can identify with – to be seen and known. When we go through difficult times, isolation typically follows close behind. Extending kindness in the form of a hug, a smile, a prayer or simply your presence can do wonders for a hurting soul. The one thing we can offer each other is grace; Grace to practice patience and compassion. May we live each day with hearts open to the needs of others and may we receive the same kindness.

 

Grace upon grace,

April

Truth telling for Moms

I’m a mom who daily lives under a rock of guilt and failure.

I haven’t given my six-year-old siblings to play with.

 I haven’t worked hard enough (or at all) today on his developmental skills.

 He’s spending too much time in front of electronics.

 I could do this all day.

 

I don’t know if it’s because Jesse has Autism and is an only child that I put this added pressure on myself, or if all moms do this. I suspect we each have our areas we struggle in, the lies we tell ourselves. When I stop the merry-go-round of all the ways I’m failing as a mom, God is gracious to help me fight with truth.

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The truth is, my son operates differently than other kids and so his activities and interests will look different as well. The truth is, I’m doing a great job as his mom, but I’m not perfect either. God knows this. The Lord didn’t wait until I had my act together before He gave me a son. It is in the process of raising him that I am sanctified!

The truth is, I am already “enough” as a mom, wife, friend and woman because Christ is enough and He lives in me. Condemnation has no place here. When I remember this, I breathe easier again, my shoulders begin to relax and I get to enjoy my son instead of focusing on all the ways I don’t measure up.

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If I stay hunkered down in guilt, I can’t clearly see the amazing blessings right in front of me. God holds out this wonderful gift and I reject not only the gifts of freedom and joy, but God Himself when I’m wrapped up in my own shortcomings.

Mom life is hard, but the truth is He gave you and me specific children, with distinct personalities and skills, to love, nourish, and raise for His glory. We get to teach them about the Lord who is our life.

             Our kids are gifts to enjoy, little lessons to learn from, means of sanctification. Preach this truth to yourself today when you feel like waving the white flag. God gives us the privilege and responsibility to care for the least of these, right in our own tribe.

It first starts with us loving Him as our ultimate treasure. That’s the place where we parent well and do anything well. Our relationship and growing love for the Lord will overflow on whatever else we put our hands to do today. We learn that even when we mess up or they do, there is grace and forgiveness extended vertically and horizontally. We start to live the message of the cross and that is the truth we need to tell ourselves everyday.

 

Grace upon grace,

April

 

 

Missional Summertime

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This summer is already the best one yet as a mom who is now turning the corner to having a “big kid”. It is also the hardest, by far. His five-year-old curiosity and energy level daily leaves toys littered on every surface in the house. The floors stay dirty and the laundry list of things to do besides the actual laundry is high. I just have one child, but he always seems to be right under me – like in the kitchen, while I’m making dinner – when kids have the ability to multiply themselves to be everywhere at once.

In the school year there is more time to myself, so the summer schedule is taking some adjustment. But I love it. My little guy and I get to set our own itinerary (aside from naps, those are still essential) and we step out the door exploring our own backyard, neighborhood, and hometown. Days are filled with lingering at the local botanical garden, swimming at the Y, visiting the playground and trips to our library, which has an awesome children’s section.

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It’s a balance of playing with him, getting regular housework done (or attempting to), and still trying to maintain my sanity, staying human. Jesse is learning to entertain himself more, which is huge. But because he is an only child I want to make sure we have time together. In a lot of ways at this stage I am his main friend/playmate. It won’t always be like this so it takes effort to be cognizant, soaking it in.

Yes some days are super hard. I’m exhausted, he’s tired, it’s too hot outside and patience wears thin as whining rises high. Yes, on those days I just want to go be by myself in a room with some great air conditioning.

But that isn’t the whole story.

Other days, sometimes in the same day, are magical moments – pure childhood fun.

We take walks; he holds my hand. We set up the plastic pins to bowl in the kitchen alley, followed by eruptions of cheer. He cools off in the sprinkler, enjoying it for the first time this year and I sit back watching him marvel over the simple things.

Growing up I took those summers for granted, thinking I’d have them always. There is something unique about this season for a child. It is a time of transition, growing up, learning by play.

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Moms, the struggle is real and I’m not minimizing that, but I know I too often suck the joy out of each day with my complaining. We set the tone for our homes and if the kids see us short-tempered and even resentful, they’ll get the message.

Summertime is actually harder than the rest of the year, but its priceless time too. You and I have the opportunity to pour into their sponge-like minds and impressionable young hearts. Parents have the classroom 24/7 right now. What do you want them to learn from you in these few short months? What will they take away from this summer?

I’m finding that the reason this season is challenging stems from learning to daily die to self. Moms feel like they are constantly giving of themselves – making breakfast, picking up toys so we don’t break our necks, grocery shopping, sharpening our parenting skills, trying to make wise decisions on the fly.

I know you want to honor the Lord in how you raise your kids. I know you want them to love Jesus like you do. I know you hope your little ones (or maybe not so little anymore) will love God’s Word. And all of this begins with our example. The responsibility feels heavy, but also freeing as we live into the identity Christ gave us. Motherhood is our ministry; our families are the people we serve. Do they see Jesus in us? This summer, you have that time.

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All women, whether you have children of your own or not, have the joy of missional motherhood:

“Every Christian woman is called to the spiritual motherhood of making disciples of all nations.”

-Gloria Furman

We have a great opportunity during the summer months, when life is slower, and pockets of time are free. I hope you don’t get caught in a rut like I have recently of hurrying these next few weeks along. I don’t want to just meet my son’s outward needs of food and clothing, or just marking time. I want to get to his heart too. But you and I can’t do this alone. Ask the Lord to help you. Ask Him to provide strength each day. The most important thing we can teach the children in our care is to show them Jesus.

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Gloria Furman, author of Missional Motherhood, writes, “Jesus invites women to missional motherhood to follow His pattern, to trust His promises, and to nurture others by the power He provides.” The best sermon we can preach is the one lived out at home. There are a little over a dozen summers you have with your kids before they lose that valuable freedom. Use it well and enjoy the very good gift of childhood summers.

 

Grace upon grace,

April

 

All About April

Happy April!

I realize the obnoxious use of self in the title however the post really is all about the month. It just also happens to be my name. Never pass up a good pun, friends.

This month’s finds are for the cook who would just like to press the ‘easy’ button every now and then, family celebrations, the lost art of penmanship and the best DIY show ever. Enjoy!

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  1. The Frugal Girls

It’s 3pm and you have no clue what you’re going to feed your tribe for dinner. Why do they need to eat every. single. day?…(half kidding). So your culinary skills are spent and you need an easy fix. Go to The Frugal Girls immediately and never worry about dinner problems ever again. (And all the moms rejoice!). The Frugal Girls offer tons of easy, affordable, crockpot recipes. Trust me, you’ll be a rock star and your family will thank you for feeding them tonight.

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  1. God Centered Mom Podcast

I’ve mentioned before how I love the Mom Struggling Well podcast. Well, Emily Thomas recently recommended another one on her show called the God Centered Mom. It has blessed me you guys. I think any mom, regardless of what season she is in can benefit from podcasts like these. I hope you give them both a try and that you are encouraged as well.

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  1. The Master Penman

Apparently the art of penmanship is a fading art due to the modern world of technology. Kids don’t learn to craft their writing when laptops are available in every classroom from a wee age. Jake Weidmann is one of twelve Master Penmen in the world and he is also the youngest by three decades.

Maybe it’s the writer in me that is so fascinated by this. I still write out my posts first with pen and paper. Take a look at this very skilled artist and how he wields a pen.

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  1. Autism Breakthrough by Raun Kaufman

I’m open on my blog about having a son on the autism spectrum. Since April is Autism Awareness month I thought I’d share a book I’ve just read. This book is an insightful read into the mind of an autistic child.

It’s a gem for parents or any friend or family member who has a loved one on the spectrum. Raun Kaufman established the Autism Treatment Center of America under The Son-Rise Program. He is witty and a great cheerleader for our kids! Kaufman recalls having autism as a child and how his parents helped him overcome his challenges – as in cured.

I promise this book isn’t hokey. He offers techniques and activities to help, but most importantly your attitude as the parent. Kaufman encourages parents to “[see] your child’s abilities rather than focusing on supposed deficiencies” (p. 268).

If you know someone who could use encouragement with an autistic child, maybe wrap this one up as a special gift just for them.

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  1. Surprises and celebrations

April is a big month of partying in my family. My grandfather, aunt, and dad all have birthdays this month crammed into one week. Squeeze into that Jason’s and my anniversary. Jesse’s birthday is about a week later.

What made this one special is my dad turning 60 and throwing him a surprise party at his favorite restaurant (Cracker Barrel anyone?). Mom managed to keep it a secret and got him there none the wiser. Family and friends came to help celebrate and the look on dad’s face was priceless when he walked in.

Another milestone was Jesse turning a whole hand. So we decided to go big this year. We haven’t done huge birthday parties in the past, because it’s been a mercurial thing for our little guy. He has had trouble in the past with hearing the ‘Happy Birthday’ song and any kind of cheering or candles. This year? This year a blessing happened. The party went off without a hitch and we. sang. to. him. We sang our sweet boy ‘Happy Birthday’ as he stood on a chair to see everyone, wearing his birthday crown (another miracle).

Celebrating life moments are important. It doesn’t always have to be flashy and spectacular. Sometimes it can be. What matters are the people we honor and how we make them feel on their special moments. Loving others well looks like keeping a surprise secret, showing up, birthday cake, balloons, hugs, the gift of laughter, and food of course.

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  1. Fixer Upper

I recently started watching this show and concluded one thing. I am definitely not a DIY girl, but sure enjoy sitting on my couch watching others transform something blah into spectacular. Chip and Joanna Gaines are so adorable with each other too. This show on HGTV (or Netflix, yay!) is worth watching just to hear Chip’s quirky quips and antics (one time he ate a cockroach) or see Joanna’s flawless taste in interior design.

 

What are things you’re into this month? Did you have things to celebrate or occasions to remember? Hopefully it was a good month for you as well. Looking forward to walking through May with you. What is the saying, “spring comes in like a lion and out like a lamb”? I think we’re at the lamb part you guys. Press on into May!