A Window View

I’ve asked another mom to write a guest post on what it’s like to parent a child with special needs. My friend Alicia has a son in the same school as Jesse, and we met at the beginning of the year. She has shown me the ropes, as it were, for support groups, community meetings on special needs, events, and overall made me feel welcome in a new school environment.

We’re both parents of children with special needs but it looks different for each of us because no two diagnosis are the same. My hope is to facilitate more stories like hers from other parents since this is a community that largely goes unnoticed. Maybe because someone doesn’t know what to say or how to help, or afraid they’ll say the wrong thing. Reading part of someone else’s story can help us relate to one another a little better. Maybe you or someone you know cares for a special needs child or adult. It’s helpful to know you aren’t alone and that others share similar stories.

It can be a sensitive topic- but more than that I think the special needs community appreciates compassion. Compassion to not feel like we or our children are less than, compassion to see us when it’s easier to avoid the uncomfortable. Here is a window view of what Alicia’s daily life is like with her son William.

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Guest post by Alicia Lynch

My name is Alicia and I’m a mom to three wonderful kids.  My oldest William has Autism, Attention Deficit Hyperactivity Disorder (ADHD) and Intellectual Disability.  He is 10.  This is one of my stories about him.  I have two other children Wyatt who is 7, and Annaliese who is 3.

Grooming is difficult for lots of children with Autism and other sensory disorders.  But let me tell you, it’s a crazy task in our house.  Back when William was a baby he hated his nails trimmed.  Once I accidentally cut the tip of his finger and it bled.  My mom guilt sat in!  Is this why he hates his nails trimmed or is it his Autism? Or something else? Then you discover a ripped toenail and wonder when did that happen?  Is that why he was upset?

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When William was about 5, we would have to put on his favorite television show, while my husband held him and I trimmed his nails, or vice versa.  We had to be quick.  He hated it!  But here we are today, at 10.  And he is finally tolerating having his nails trimmed.  Does he like it? No. Tolerate it? Yes.  And that’s a WIN!

I write this to give others hope. Your child with sensory issues might deal with a simple grooming task at 10, 12, or hey, your child might handle it at 5.  But there’s light at the end of this tunnel for us.  When he was 3, I never imagined that we would be where we are now.  Mamas, take a deep breath and keep on going.  Because I swear to you, that was just yesterday.  Now, haircuts, that’s a completely different story!

To those reading this who do not have children with special needs, I ask that you be kind and patient with us parents of special needs children.  It’s simple things like trimming a child’s nails that will put you over the edge some days.  It’s these little things that are not difficult but they add up.  And special needs parenting is stressful enough.

 

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Upside Down Blessings

Every Wednesday afternoon I sit in a waiting room for close to an hour while Jesse has occupational therapy. There’s a bulletin board in the front office with their business public Wi-fi password, upcoming events, and articles related to children with special needs. One article in particular caught my eye since it was an interview from two parents with a special needs child. In it, they shared, “We grieve the dreams lost, but not our child”. I remember wanting to shout “Yes!” after reading that small but powerful sentence. Their words echoed something I had hidden in my heart for years but couldn’t even articulate without it coming off like self-pity.

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The truth is, no one wishes for a baby with special needs. We aren’t wired to think that way. So when the diagnosis does come, whether in utero or well into toddler years, there IS a grieving process over future hopes that will never materialize.

But we’ve joined a club we didn’t sign up for and we’re here- so now what? Does it change the way I love my son? Of course not. It just means there will be a plan B that isn’t laid out yet, in which there is little control or foreknowledge. I know that sounds very much like parenting a typical child, but I’m convinced there is more of a blueprint for raising children without a disability than with one. It’s not to say that parenting in general isn’t soul-draining- it is.

Yet the future for most children is that they will one day tie their own shoes, converse in complete sentences so that others understand them, and become independent fully functioning adults in society. There is a broad but knowable path laid out here. Yet the spectrum for autism, OCD, ADHD, or physical handicap is even bigger. So no two special needs persons are alike in their diagnosis which makes parenting feel more like a desert wilderness. It’s harder to swap “what did you do when she was 3 and this happened…” stories to learn from.

I’d like to say that 7 years into this I never get sad. But just as the parents in the article said, you do grieve over broken dreams… and the daily struggles too. And yet, Jesse is a gift I can’t imagine living without. He teaches me how to see people, to not be so self-conscious and to love unconditionally.

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My son is what I like to call, an upside-down blessing. God often teaches us through suffering and disappointment. This is part of the upside-down kingdom effect. I lean more into Him, cry out when I don’t understand, in the times I’m flailing because my faith is shaken.

It stretches my trust in God, the Sovereign Creator. I’ve even lately begun to see secondary infertility in a new light, because maybe my ministry is to take care of the one. Even as he gets older his dependence on me hasn’t changed- so maybe, just maybe he needs all of me right now and God knows that.

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In the end, this piece of life and how we respond can be for God’s glory and our good. The growing pains are real, and will probably never go away this side of heaven. For me and my husband our Christian faith keeps us going. We believe that one day our son’s mind and body won’t be disabled anymore. One day he will be fully restored as will we. For the Christ-follower, there is always hope. Because hope becomes sight when we see Jesus face to face; and all the dreams I thought I wanted will pale in comparison to the very thing my heart always hungered for.

 

Grace upon grace,

April

 

 

Fight like a good neighbor

For my birthday Jason and I rented Won’t You Be My Neighbor?, the recent documentary about Fred Rogers’ life. Most of us knew him as Mister Rogers from his children’s show, with the same name, on PBS. I was reduced to tears halfway through the film, seeing this man fight for goodness in a culture hell bent on being hell bent. Mister Rogers was a counter-cultural show, and relevant at the same time.

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He purposely talked slower, keeping a quiet pace for his viewers, in reaction to the fast moving, in-your-face entertainment catered toward young consumers. Mister Rogers never dumbed down his message but instead spoke directly to children as people, not half-human martians. He also addressed the current issues of his day with subjects about assassination, politics and race. It was never overt but more like a gentle conversation, leading by example.

The documentary shows how Fred Rogers used his life to display kindness to all people. In essence, he saw every person with inherent value, choosing to treat others with dignity. Mister Rogers demonstrated what it means to show grace in an angry world. It’s a good lesson for Christians too.

It doesn’t mean we ignore the wickedness of our time, but first view each person as an image-bearer in need of God’s salvation and grace.

We start the good fight here, not for external moralism, but compassion for heart transformation. The greater war within each of us is spiritual. A person, a people, a nation cannot change without the inner man being renewed.

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It is so easy to become disheartened in our current climate, to watch evil win. When everyone does what is right in his own eyes sin will prevail. We do what we want under the disguise of “tolerance” to justify our sin. Helplessness sets in for the Christian so we keep our heads down.

But Fred Rogers bravely and publicly lived out his conviction to reach children with the hope of transforming the next generation from hate to love, anger to kindness. And yet we go a step further because it isn’t enough. Outward change only results from inner change first. We operate out of our own regenerated hearts before engaging in spiritual battles/culture wars. Only then can we approach others from a place of sincerity and live out the Gospel message.

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Friends, don’t grow weary in doing good. Even with mass chaos in our world we have the invaluable gift of giving the lost what they need most- Hope. We are the Light Bearers to darkness.

Remember who you are in Jesus Christ and fight the good fight right in your own neighborhood.

 

Grace upon grace,

April

 

Go deeper:

Revelation 2:2-7

Hebrews 12:3

Galatians 6:9-10

 

4 things I learned this summer

Fall is my favorite. The weather in Alabama doesn’t really change until almost November, but seasonal house decor and pumpkin spice lattes and college football are in the lineup. Even though this summer had plenty of hard, there were also more naps, playtime, and grilling out.

There isn’t such a thing as “perfect” and that goes for each season we’re in (literally and figuratively). As a mom to a sweet boy on the autism spectrum I craved finding ways to fill myself up in small ways while still attending to his needs. Here are things I learned this summer.

1. Decluttering is therapeutic.

We are planning to move in a few months to the next town over so I’ve slowly been going through closets, sorting out what we don’t need or use anymore. Those things get donated. It’s funny what motivates you to become a minimalist. I really don’t feel like moving junk from one house to another, so this has been a surprisingly great stress reliever.

2. Audiobook + an actual book = efficiency

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It’s no secret that Jesse and I visited the library this summer almost once a week. I tend to check out fiction books instead of buying them for lots of reasons (bookshelf space, what if I hate the book, money…). But my summer brain doesn’t have as much energy or time, so I checked out of the library an audiobook, along with the book itself. Listening to the CD in the car and picking up with the book at home helped me stay in the story more and not give up on finishing it. Also, it’s fun!

3. YouTube workouts saved my exercise routine.

Part of having Jesse at home this summer meant I wasn’t going to the gym to workout. Which is really fine by me because it just feels gross and stinky and germy anyway. But I was missing the mental health benefits from exercising, as well as needing something low-impact to help with my low back aches. Well. Little did I know that finding an exercise regime that I actually liked was as easy as turning on my t.v. You can find plenty of exercise options through YouTube. I have really enjoyed the 20-30 minute Pilates videos by PopSugar fitness.

4. Creativity takes courage and intention.

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I read again Hannah Anderson’s book ‘Made for More’ this summer. I can’t recommend it enough for other women. Not only is she a writer and someone I want to be when I grow up, she’s also a wife and mother. Anderson recently interviewed another artist/mom on how she incorporates her calling as an artist with the calling of motherhood.

Honestly it’s still something I struggle with. But I’m also learning that God put in each of us different gifts He intends for you and me to use. If we aren’t exercising those passions in some form, no matter how small, it’s disobedience. Because the Lord can use my meager loaves and fish to multiply exponentially if He chooses to. I’m only required to act.

Looking forward to hearing about your summer learnings. What is one thing you like about summer? What is one thing you’re glad to see go?

 

Grace upon grace,

April

 

 

 

 

Is ordinary okay?

“Isn’t it funny how day by day nothing changes, but when you look back, everything is different.” -C.S. Lewis

Yesterday Jesse had a half day of school, so I drove there to pick him up at 11am only to get home some time after 2pm. What happened in between was this.

I was buckling Jesse in the car of the school parking lot when another parent came over, remarking that I had something in my tire. Well you could definitely hear the air hissing out with a thin, sharp metal object pierced in the rubber. I called Jason to see if he could come check it out and later he determined the tire needed changing.

He changes the tire then makes the executive decision for all of us to eat a late lunch at Chic-Fila (which why would anyone ever oppose that?). After lunch and Jesse playing in their indoor jungle gym (I make a mental note to use a ton of hand sanitizer afterward), we head over to the car shop.

I’m informed that they can’t even look at the tire or replace it until tomorrow morning. So, weary and with a slight stress headache, we head home to watch Frozen for the hundredth time.

This was not a normal day for us, but not anything extraordinary either. It happens every day to people. Most of life isn’t flashy and exciting and like life on vacation. We get up, go to work or school, meal plan, buy groceries, laundry, clean, etc. All to do it over again the next day.

But here’s the thing. Sometimes the subliminal message in our culture seems to be that ordinary is boring and therefore to be avoided. There is a push to be “unique” and in one sense we all are because God didn’t create any of us alike. Even twins develop different personalities (ask me how I know). But if everyone is striving to stand out and be “different”, isn’t that just another kind of conformity?

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In Paul’s letter to Titus he says, “Our people must learn to devote themselves to doing what is good, in order that they may provide for daily necessities and not live unproductive lives” (Titus 3:14).

We still have to work, eat and sleep. Our basic needs still apply and often this includes taking care of others too. My hope is that you and I learn not to despise ordinary living. That even being ordinary is okay even as you use the unique gifts God has blessed you with.

Because it really sums up most of our lives. The moments each day add up over time and turn into weeks, then months and years. It would be a tragedy to have wasted your one life, always seeking the next thrill and not appreciating the commonplace. Our worth isn’t calculated by how “exciting and interesting” we are is it? It’s so much more than that.

 

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So what does Paul encourage Titus and the church to do?

Do good. Live your lives.

I think this is part of “keeping your eyes on your own paper”, to stay faithful right where you are.

When we are faithful to do this, we begin to realize that we are exactly where we need to be. You and I have a different ordinary, but it doesn’t make mine or yours less significant.  Our kingdom work happens here.

 

Grace upon grace,

April

Deep breath- it’s Monday

Part of the goal for Redeemed In Grace is to help you extend grace to yourself, as you learn to do this for others. And let’s face it, Mondays are the worst day to practice grace for most of us. The beginning of another week is a true gift, but it can also feel like the start to the daily grind. In order to help each other shift our gaze from the mounds of paperwork, laundry, phone calls, (fill in the blank), to an eternal mindset I have written a prayer for you today.

Because I believe that when our perspective changes so can our hearts. Gratitude begets a gracious spirit. So while the responsibilities and circumstances of life in general may not change, our attitude toward those tasks can. And hopefully you can discern this as a sincere effort to encourage you and not preachy. Because that is my prayer for you-  to be encouraged here in this little online space.

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Father,

May we rest in our salvation and pursue satisfaction in You.

Knowledge, love and faith are all gifts from Your Hand.

We acknowledge that our greatest gift is Jesus-

Prophet, Priest, and King.

He is worth following, worth living and dying for.

Christ is worthy of our worship at all times

from every nation.

Let us taste the fullness of joy that we already have in Jesus.

 

May we make You known by our choices, speech and actions so that this world sees the light of truth in us.

Awake us from the things that deaden our spirits and grace Your Church with zeal under the banner of Love.

Teach us to remember Your truth so that we sense Your Presence in this day.

In the strong Name of Jesus,

Amen

Life-giving community

Hi patient readers!

This summer I took some time off to focus on Jesse while he was out of school. Honestly I didn’t write much because the past few months were mentally and physically taxing. It was hard but rewarding because my goal was to invest in my son’s heart while we had uninterrupted days. Motherhood ain’t easy and part of that is because of how much it requires to give of ourselves- daily- hourly- sometimes minute to minute.

But the sweetness comes when praise songs we’ve been listening to over and over start to bubble up out of his little voice. It’s when the things I have been teaching him for so long and start to feel pointless finally click. I saw his character form more over the summer and mine too. His speech has blossomed and he’s testing the waters of independence more. We still have a long way to go, but that’s okay.

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As a mom to a child with autism I’m learning that I don’t need to assume his limits. Meaning, it just might take more time, but he’ll achieve milestones eventually. Like learning to ride a bike has been a challenge. Jason and I got him a bike (with training wheels) for Christmas. For the longest time he only wanted to sit on it. And he was even timid about that initially. Then over the summer he began to pull his bike out out more. He would sit on the bike and let me gently push him from behind as he learned to steer.

Lately he has shown interest in working the petals but we aren’t there yet. And that’s just fine because I believe in him to get there one day. His confidence in his own abilities has to click first.

Pouring into Jesse’s heart as well as working on developmental skills has been the main agenda since the beginning of summer. I think it’s like this for all mothers really; there isn’t a set time to start and stop such a huge task. There are seasons I’m focused more on these things and there are times when others (church leaders, teachers, therapists, family, friends) help take the driver’s seat. It really does take a village to raise children, special needs or not. I always seem to be re-learning this because my job feels isolating, and can be if I let it. But God didn’t create us to live independently from each other. We need helpers in the community and the body of Christ to come along side of us.

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Jesse is seven. It seems to be going by so fast on one hand, while daily living can feel monotonous. And yet I know these are the formative years I don’t want to waste. Staying faithful is the key. I’m grateful for our invaluable time together over the summer, but the school year will be good too. There is more time for “his village” to teach him, allowing me to still be a person and re-charge, hopefully to be an even better (nicer?) mom. May we learn that it is not good to parent alone, and receive help from others. Let us bless those around us, remembering that leaning on one another isn’t weakness but life-giving.

 

Grace upon grace,

April

If you are looking for an online community to help you navigate parenting a special needs child this is an encouraging space to go to: Anchored Souls: Real Hope for Real Life