The joys and challenges in parenting a special needs child

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

We’re still settling into the “new house” as my son 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.

Along with that there have been particularly stressful moments recently trying to mother/referee his 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.

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 my son.

I believe God has honored this. 

My Father teaches me more and more and more patience when it comes to working with him. My son is the only extrovert in our 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 my son 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 my son worth it? Always.

Knowing that God sees you even when no one else does can help you persevere. Jesus shepherds those that have young (Isaiah 40:11) and He will never leave or forsake His beloved children (Hebrews 13:5).

You and I can rest in this, then take a deep breath and trust God to lead. 

Grace upon grace,

April

The Life I Didn’t Expect

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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.

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/

Words to live by this year

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“His divine power has given us everything we need for life and godliness through our knowledge of Him who called us by His own glory and goodness.

Through these He has given us His very great and precious promises, so that through them you may participate in the divine nature and escape the corruption in the world caused by evil desires.” – 2 Peter 1:3-4

Gratitude.

Contentment.

Satisfaction.

These are the words I want to practice more of until it becomes habit, until it is my nature.

Habits of grace.

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2018 was hard and wonderful. Isn’t it normally like that? Life is full of trials and joys. We moved into a new house and Jesse started a new school- again. He watched his first movie (Toy Story in case you’re wondering) over the summer.

We’re starting over in many ways but also living just as we have, day after day. This is a new year, but you are still the same you. We each have one life to bless others, worship the Lord, and use our gifts.

Our lives are filled with so many good things. We enjoy them with gratitude knowing Who lavishes us with these graces. But with all things kept in eternal perspective, only Christ brings purpose to even these earthly blessings.

Only God can satisfy a parched soul.

Only ‘I AM’ fills the cracks with Himself. Longing for the Lord is good- be patient and persevere in seeking His face.

Coram Deo. Living before the face of God.

We let our light of salvation flood out the dark- in our own flesh and the culture around us.  Jesus can use you this year to be an agent of change for His Kingdom, that is not of this world. That’s worth celebrating any day of the year 🙂

 

Grace upon grace,

April

 

 

A Christmas Gift every day

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There seems no end to the rush- from Thanksgiving, to Christmas, on into New Year’s. I’ve become a bit of a Grinch this season with the avalanche of activities, filled with HIGH expectations. Christmas is the one time of year where nostalgia perfection rules. We want to “remember what it was like when we were kids” and create those kind of memories for our children too.

It’s exhausting.

Maybe because we just moved the first week in December, Christmas has felt more like a to-do list on top of the normal day to day things, and oh, did I mention we just moved?!  Let me just hibernate like the bears do and emerge come spring?

Cynical, yes.

Even though the busy pace has threatened to undo me, God is lately at work tilling my heart.

I don’t want to miss the wonder of Christ’s birth.

Heaven met earth in a stable suited for farm animals, witnessed by only Mary and Joseph, then shepherds, and later on the wise men. Christ came without excessive decorum, but as a baby, the most helpless and vulnerable a human can be.

I pray to not get lost in the frenzied swirl of distractions or my own pessimism.

Because honestly, Jesus never asked us to wrap 1,499,586 presents this season, or send Christmas cards with a picture of your family to every. single. person you’ve ever met, or attempt that cake from Joanna Gaines’ cookbook because it looks “Christmas-ey”.

All we’re asked to do is receive Him- the Greatest Gift.

It’s hard for us to be on the receiving end of things sometimes. In a self-reliant, self-made, autonomous modern Western world, we have to do something before we get, right?

God’s economy doesn’t operate that way. We don’t have to perform or earn anything. It’s not a rewards system like in kindergarten.

It’s all grace.

Does it mean we can’t be light-hearted and enjoy fun things during the season? Of course we can. We should celebrate, especially as Christians! But it does mean that we are free from having to tie one more ribbon or buy one more gift for the sake of a “perfect” Christmas.

You do not have to perform to be loved by Jesus. 

Yes, there may be pies to bake, rooms to clean, and even a few presents to wrap. But how we view Christmas is what matters in the hustle of the holidays. We can posture our hearts to worship knowing that we already belong in God’s family, no matter if the ham burns or you forgot to send a Christmas card to Aunt Martha, or that hard to buy for person hates what you got them.

Whether you’re familiar with the loud and busy of Christmas bustle or tucked away lonely, wishing you had someone to buy a present for, remember that Christ came for you too.

Jesus is the Greatest Gift we can have (and all we truly need or want) not just this Christmas, but every Christmas, and every day. One day we’ll see the Son of God who risked everything to save us from ourselves. He’s the Only One who can satisfy our cracked hearts, not things or experiences. When see Him face to face, that will be the best Christmas of all.

 

Grace upon grace,

April

Growing in grace

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If you haven’t noticed, on Fridays I’m taking time to post short reflections or prayers. Hopefully you are encouraged by them. This is a prayer from the Valley of Vision. It would make a great Christmas gift for someone, or for yourself 🙂

May you grow in God’s grace today. Blessings to you.

Spiritual Growth

“May I be consistent in conversation and conduct,

the same alone as in company, […]

May I never be satisfied with my present

spiritual progress, […]

May I never neglect what is necessary to constitute Christian character, […]

May I cultivate the expedient,

develop the lovely, adorn the Gospel,

recommend the religion of Jesus,”…

 

 

Grace upon grace,

April

 

 

Immanuel

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Love came down quietly, like through the backstage door.

Jesus chose a humble birth of lowly means to parents without money or status. He was delivered in a first century barn surrounded by stench and filth.

Christ became flesh, experiencing life as we do yet did not sin.

He appeared at the appointed Time in history to turn His kingdom upside down from the expectations of the world.

Taking on our humanity Jesus became ‘Immanuel’, “God with us”.

Always.

 

Grace upon grace,

April

Love without End

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God is Greater Than,

more Beautiful, Wonderful,  or Powerful

than I can fully understand.

He spoke Everything into existence,

faithful to hold all things together.

By His command I am at His mercy.

Yet this Almighty, Divine Lord also moved in Love, toward people who would disobey Him, reject His Son, and hate Him or anyone claiming to be His children.

But He also knew that some would not rebel forever- fellowship restored.

His Greatness consumed my insignificance and wrapped it in unending love.

 

Grace upon grace,

April

Because I’m difficult too

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It’s funny how we tend to think of ourselves as “normal” and everyone else as quirky characters. If we could be on the outside looking in, we might see it a little differently. The people in our lives: friends, co-workers, family (especially the people who live with us) either refine or bless us. But there is no getting around that God uses our different personalities for us to personally apply truth each day.

So I have a prayer for you and me as we head into today. Because whatever you do, I’m almost certain you’ll run into another human being which requires you to interact. If you’re like me, this can be challenging, but also a blessing. Usually when I have a perspective shift my attitude toward how I’ll view and treat others changes also. So here are words you might need to say back to the Father too.

Father, 

Today will be hard because there will be people in it.

Let me use those opportunities to be refined like Christ,

practicing self-control over my tongue and heart.

Help me to be gracious in speech, slow to anger, quick to listen, supernaturally loving the difficult or hurtful.

Protect my thoughts from comparison, envy, or self-righteous judgment.

I ask to have the freedom to show compassion and patience no matter how different the person might be.

Bring me to my knees in prayer when I think wrongly of someone else- pray for blessings toward them and not an ill will.

Grant me a humble spirit and a love for You that overflows into my everyday life. 

Let Jesus be the reflection when I look in the mirror.

You cover me in Your grace when I fail and rejoice in those small spiritual victories. 

Thank you for choosing me, loving me even when I’m difficult to love- help me do the same when I meet another face today.

Grace upon grace,

April

the blessings of rain

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It’s raining, so the window is cracked open to hear the steady rhythm. Sometimes the drops rush down so fast that the sky seems to be pouring out.

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Funny how we’re so self sufficient in modernity but still rely on the heavens to open up for something as simple, yet vital, like water.

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God is a Gardener not just to our souls but tends to even the basic physical needs too. No detail of our humanity and spirits is overlooked by the Sovereign Creator.

 

Grace upon grace,

April

How do you know?

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“We know that we have come to know Him if we obey His commands.

The man who says, ‘I know Him’, but does not do what He commands is a liar, and the truth is not in Him.

But if anyone obeys His Word, God’s love is truly made complete in Him.

This is how we know we are in Him: Whoever claims to live in Him must walk as Jesus did.”

1 John 2:3-6

The biggest lie we can believe is to deny Christ as Lord and Savior. Unbelievers embrace this by rejecting Jesus as the Son of God whether they openly admit it or not. Rebellion can be visible and loud, or a quiet hardening.

Let us live in the truth we know, resting in our confidence and freedom. Jesus paid for our sinful, helpless souls so that we could be free to love, trust, and obey Him for all eternity. This is the central truth to all of life – to know Christ and be in Him. Do you know?

 

Grace upon grace,

April