Most of the time caregivers are overlooked. Rightly so, the dependent needs our attention. Whether a person gives care to young children, the sick, the disabled, or the elderly, I had them in mind when writing this note of encouragement. Blessings on your day.
To the Caregiver
Someone needs to hear today
that their doing is
worthwhile.
It isn’t glamorous,
flashy or very exciting,
but someone needs you.
Your someone depends on
you.
What a gift to be
needed.
It may be draining
and wearisome and
monotonous.
And yet the gift
we give everyday
is in the giving of
ourselves;
the hands and feet
of Christ manifested
in our serving
the one in need.
Your service might be
for a season or lifelong,
but I want to tell you
-it matters.
How we care for the ones
given to us demonstrates
the love and patience
of Jesus
or becomes a
missed opportunity.
Keep moving forward
in moments of despair
or frustration.
God is there.
God is here.
He sees you
and leans in
when we ask
to operate in His
strength, not ours.
The Lord’s grace will be
enough
in your weakness.
Don’t lose heart.
The power of God
is demonstrated in our
weakness,
The love of Christ
displayed in our actions,
The Spirit comforts
and encourages us to
persevere
another day.
“He gives strength to the weary and increases the power of the weak.” -Isaiah 40:29
“difficulty is a normal part of life in an abnormal world.” -Stephanie O. Hubach
We live in a fallen world. As much as we may try to keep this reality at bay, it is evident in our culture, current events, and even in ourselves. Since we all bear God’s image, unbelievers also recognize things are not as they should be. They seek to create a human utopia through climate change, man’s sense of justice, or any other philanthropic endeavor to turn the world’s axis right again. Others may bend under resignation, with a fatalistic mentality, and live just for themselves- eat, drink now and be merry.
But neither of those options are any good. Mere outward reform and indulgence are fleeting. As Christians, God calls His people to engage others while still trusting in His Sovereign plan. “Hehasshowed you, O man, what is good. And what does the Lord require of you? To seek justice, love mercy and to walk humbly with your God” (Micah 6:8). How are Christians living out this mandate right in their own backyard? It can take many forms because the needs around us are many, as we experience life in a broken world. Believers are called to be Spirit-led when serving, as God directs our hearts in the work He has prepared for us (Ephesians 2:10). All Christians are called to be the hands and feet of Christ in whatever capacity, gifts and ability God has given them.
In her book Same Lake, Different Boat, Stephanie O. Hubach argues for the Church to recognize the need for ministering to the disabled. Disability is a broad term which includes physical, intellectual, developmental, mental or sensory. Under this umbrella consist people with autism, blindness, deafness, spina bifida, Down syndrome, multiple sclerosis and cerebral palsy, to list a few. Besides the fact that God commands us to care for the least of these, meaning those who require the help of others long term or short term, one might ask, “What does this have to do with me?”
Before my son was born, the special needs world was not on my radar. It wasn’t that I didn’t care, it just didn’t affect me personally, nor did I know many people who were disabled. Then the Lord lovingly assigned it to me. Now I see a need which mostly flies under the radar, because those with disability typically need an advocate. Advocacy normally falls on the parents or caregivers, who already have a limited supply of energy and time. Their net covers just the one in their care, not spreading out to the larger disabled group. This is a great opportunity for outside help, particularly in the Church. Back to the question, “What does all this have to do with me?” Well, when we remember our own brokenness and the free grace which has been lavished on us, it should prompt every Christian to turn around and offer acts of mercy to a hurting world. We tell others the Gospel by also showing it to them. Hubach puts it this way:
“The first thing that motivates us to identify with others is a proper perspective of ourselves. “Do not think of yourself more highly than you ought” (Romans 12:3). We must recognize that we all have needs- that is a normal part of life in an abnormal world. Our brokenness and vulnerability as humans is universal; how it manifests itself is variable. Same lake, different boat.”
Just as Christ acted on behalf of every redeemed sinner in the most monumental, supernatural work of atonement, Christians are called to serve others sacrificially, although imperfectly.
If you agree that Christians have a responsibility to bless and serve the overlooked or forgotten, but don’t know how to help, here are a few suggestions. A good starting point is in your local church. Is there a Sunday school class offered for special needs that you can help with? Or perhaps there is a need for care during the main worship? Some with special needs may not be able to sit for an entire service, or will make involuntary disruptions such as noises or hand flapping. This can cause the entire family to feel self-conscious, not to mention distracted as they try to participate in the service, while keeping their loved one quiet. What a blessing to be able to minister to the family by providing a space where their loved one is cared for, so they can focus on the sermon and receive spiritual nourishment.
Another way to minister to someone with a disability is to look in your community. There are care facilities and special needs sports/art/music/camp programs which I’m sure would love more volunteers. I have found over the years that I receive possibly more encouragement than the ones I attempt to serve when taking part in the special needs world.
Although the building itself is not the church, but the people inside it, the structure of a church can be very beneficial in welcoming those with special needs. Does your church facility accommodate those with disability by making the entrance handicap accessible, providing a family restroom for diapering needs, or have an unused quiet room for when a sensory overload meltdown occurs? Are these things in place or do they need to be implemented? The way a church does or does not provide accommodations speaks volumes on whether the welcome mat is laid out for special needs or pulled up tightly. A church can unknowingly act like a country club by passively excluding those who are different, or make its members uncomfortable. The function of a church operates out of its particular culture in what it values, not what it says it values, but actually does.
Are there persons with special needs who regularly attend your church? Are they an integral part of the body or kept on the fringe? Is your church missing this vital role? Please don’t misunderstand the reason for this post. My goal is not to pile on a guilt trip. These are however, good questions to consider by bringing awareness in an area of ministry that might need attention. What a great opportunity the church has to show the love of Jesus to this particular group. We are made up of the body of Christ and need each part. “The eyecannot say to the hand, “I don’t need you!” And the head cannot say to the feet, “I don’t need you!” On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other” (1 Corinthians 12:21-25).
A word of encouragement to someone who feels intimidated in serving people with disability. That’s okay and I think normal. Those who take the care of others seriously will have a bit of trepidation. We don’t want to add to their burden by our ignorance in how their medical equipment works, or how difficult it might be to relate. I have no educational background in special needs. I’m just a mom who knows her son. The vast spectrum of disability and my lack of knowledge overwhelms me too! But here’s the good news. We don’t have to do any of these things in our own strength. That isn’t just a pretty little saying, but absolutely true to those who claim it by faith. God will give wisdom and help as we ask for it. The needs will vary in a case by case situation, but God has promised to provide the grace and strength we need for this day, to carry out the work He has given us for this day. With that said, it is my hope that those with a disability and their families will be gracious receivers, knowing we are imperfect and may not get it right the first time.
Ministering to those with special needs is an opportunity to become more prayerful and Christ dependent, rather than go rogue and seek only outward reform. The point of inclusion for special needs families is ultimately to point them to Christ, just like everyone else. This is the heart need every soul longs for. Do they belong too?
Stephanie O. Hubach’s book Same Lake, Different Boat has greatly ministered to me. She is a parent of two boys, one with Down syndrome. Hubach has insight, practical wisdom and Biblical encouragement, beneficial for every Christian whether you are directly affected by special needs or not. As Christians we are called to come alongside those who are in need, like those touched by disability. I appreciate how Hubach does not come across as demanding, angry or self-pitying in her experience and analysis. She shoots straight with a heart of compassion and a dose of humor.
We are solution oriented people. If something cannot be fixed or improved upon, our tendency is to shy away instead of lean in. It is not wrong to try and make things better. As image bearers, one aspect of this is healing. But the kind of healing Christians can most meaningfully co-labor with God in is spiritual. We bless others when we truly see them with dignity as fellow image bearers. We likely cannot fix the visible disability, but we can be a friend. Believers can demonstrate the Gospel by speaking up for the weak, serving in kindness, laced with humility toward those the world does not highly value.
Hubach speaks of the worth of each person as the starting point to understand the reason we serve others by saying,
When the image of God within is central to our understanding of humanity, it sends a powerful message about human value to the world around us. Our culture often measures personal value as a function of productivity. The degree to which we are able to contribute to society is the degree to which we are valued. In God’s economy, however, human value is defined by the Creator Himself through the imprint of His image in humankind. Others take notice, not merely when we say this is true, but when we live like it is true in respect-based relationships. Our actions ought to declare, “You are incredibly valuable!” to everyone we meet.
In the same way, the powerful message of the gospel is demonstrated when we respond to others in grace-based actions. Our competitive culture is uncomfortable with weakness. When people see us acknowledge our frailties and intentionally engage others in the areas of their brokenness, we live out the gospel of grace in powerful ways.
This kind of service bears fruit that is pleasing to God. This kind of healing when God is at work is of eternal value. May God direct all of our hearts in His love as we do His kingdom work, persevering in His strength.
Grace upon grace,
April
Here is a helpful link in understanding the statistics of children and adults with special needs in the Church, as well as how their families are impacted.
He stomped his foot and looked at me with arms crossed in displeasure. This behavior is a recent development that I have mixed feelings about. Obviously defiance is not okay and needs loving correction. But on the other hand, I see his behavioral development as crossing a threshold, and it makes me jump with excitement on the inside.
Progress.
Noticing little changes like this even when the result isn’t so great is a step towards thriving. And he is, we just go at a slower pace than most. That’s okay.
Sometimes I get stuck on a merry-go-round of sadness noticing all the ways my son isn’t like his peers. It can quickly plummet into a downward spiral if I don’t get off that circus ride. Most days we operate in our own world without the comparison of typical children since my son is an only child.
The days we are around other kids can feel like a bucket of ice water dumped over me. A cold reminder. I hate being blindsided by my feelings like that. It’s not just because my son has special needs. He’s amazing and I know that. The isolation Jason and I experience as parents is what can make me bitter. We get pushed aside in those casual conversations parents have about their typical kids, concerned their child will fall behind in school, soccer practices take over all their free time, or fill in the blank. It’s hard to not inwardly roll my eyes – because I’m mature like that.
What I am learning on this journey of special needs parenting is that pain is universal, but not divided equally. It doesn’t matter the size of your problem, we all have feelings that matter and should be validated. I never want to minimize what a friend is going through just because I can’t understand it.
If I am going to practice grace toward others, I first need to learn the secret of contentment in my own circumstances. I have failed to do this in my own strength, but have had victories in the Spirit’s power too. I want to learn how to honor someone else’s struggle so that I can come alongside them, not dismiss their trials.
Here are 3 things I know to be true in cultivating grace and gratitude:
1. Comparison is the thief of joy.
It breeds discontentment. Comparing ourselves with people we know or people we’ve never actually met (Instagram influencers, celebrities, etc.) manifests quietly in our hearts, as our thoughts lash out toward that person, usually without them ever knowing. We end up in envy and self-pity that eats away at our spirits if we don’t change direction.
2. Competing over our trials leads to bitterness.
I know it sounds crazy, but sometimes we rank the severity of our trials with one another. We use our pain as a measuring stick of “how bad we have it” instead of seeking to comfort a hurting friend. I know I’ve done it. But the different kinds of suffering we experience isn’t an indication of how spiritually mature we are. How we respond in those trials, big or small, is the factor.
Do I run to the Lord for refuge? Do I lick my own wounds and try to patch them up? Do I just get angry?
3. A thankful heart guides us back to the Father.
The reason God commands us to be thankful people is that its good for us. Our outlook is brighter and our hearts lighter when we see how much we are blessed. Count the ways, big and small, that God has shown you grace upon grace. It doesn’t come natural for us, but living out this God-honoring principle will be a blessing in itself. Grateful people are happy people. So I start to notice how he is currently laughing, clasping both hands over his mouth as if to contain the giggles bubbling out. The way he is super polite, always making sure to say “Excuse me” in the right context or “thank you” and “please”. We celebrate the small accomplishments, not taking them for granted.
I see how God is using our present circumstances in a new school to help his speech sky rocket. His teachers and therapists are amazing. Not only that, we have been tremendously blessed with a church family that loves him and supports us. Our families live nearby and help any way they can and often.
These are things the Lord has reminded me of lately. He is faithful to turn my heart back to Him with gentle reminders of His love for me, for my son. More importantly, the temporary blessings point toward the greatest blessing I have forever: Christ. They’re like arrows that lead me back to Him, because of what Jesus did at the cross. For me, for you. It all circles back to Christ. Preaching the Gospel to ourselves each day realigns our ungratefulness to His grace-filled heart.
My son loves to imitate. He also likes to hear my husband do imitations. When our son 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.
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 his 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.
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.”
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.
An older woman with children grown sat in my living room listening to me pour my heart out. I listed specifics of disappointment I struggle with but it probably sounded more like a child whining. We didn’t know each other, not well anyway, having just met face-to-face for the first time that day. But she was recommended by a trusted mentor as someone who could listen and give counsel. I didn’t hold back, and after quietly listening letting me vent all my frustrations, she wisely directed me to the book of Job.
Here was a man who lost everything. His servants, wealth, all of his children, livestock, and income were gone. Then he was stricken with boils all over his body as the last blow. His wife and friends didn’t provide much help either, urging him to curse God and die, or confess some hidden sin he must have for God to permit all of this.
Job had no answers and he found no comfort.
The last few chapters in Job are some of the most powerful words recorded in the Bible. The Lord decides to speak directly to Job, asking rhetorical questions reminding him (and us) Who is in control of the universe.
God basically tells Job that since He is all-wise and all-powerful, who is he to question the Lord?
Our thoughts are so limited, and understanding as vast as the present day. I don’t know what will even happen beyond the end of this sentence. Not really. We learn from past history but God was actually there. Not only that, but He has laid out the future as well. He is there too.
So this godly lady sitting on my couch pointed me to Job’s story to help me remember God’s Sovereignty and Greatness. Just like Job, our lives are one of many stories weaved into History. It’s not that our lives are meaningless, but in comparison to the Lord’s omnipotence who am I to stamp my foot and say “life isn’t fair”? If I know He loves me fiercely enough to send Jesus to die for my sins then can’t I rest in His wisdom for the rest of my life too?
The continued disappointment of infertility sometimes stings. I think I have a handle on it then there’s another pregnancy announcement or baby shower invitation. It’s like throwing cold water over my head. I’m stunned by the swell of emotions that come from a deep place inside me of something lost- something that never was.
Resentment isn’t far behind if I don’t quickly put a lid on the explosion of feelings. So I asked this woman what do I do when this happens? When I’m side-swiped by my own heart?
She encouraged me to go to the greatness of God when I feel jealous, hurt, left out, over a heart desire unfulfilled. That’s why we looked at Job. It is one of the best places to see the Transcendence, Sovereignty, and Wisdom of God. Only God is big enough to fill the gaping hole in our hearts.
If I am not given more babies then He will give me more of Himself by helping me understand that only Jesus satisfies the longings of my soul. I may not understand why I have infertility or why God chose me and Jason to have a special needs son. These are worlds I never expected to enter, but here we are.
When we ache over unfulfilled dreams, we can always look to Christ. God proves Himself over and over to us even though He doesn’t have to. As we remember His past faithfulness, His present goodness, and future graces, well, these are gifts to cling tightly to. His love for us is still true, meeting us in the pain. Our Father gives us our Hope in the middle of Disappointment.
There is a song by Lauren Daigle that speaks directly to trusting God when life doesn’t turn out like you expect. I hope you are ministered to today in whatever loss or dream you’re still waiting on.
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.
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.
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.
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.
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.
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.
***
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?
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.
Every Wednesday afternoon I sit in a waiting room for close to an hour while my son 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.
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. Autism, Down syndrome, OCD, ADHD, or physical handicap is even bigger. 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, my son 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.
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.
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.
When my son was not even a year old I was trying to wrap my brain around words like “developmental delay”, “autism”, and “hypotonia”. “It wasn’t supposed to be like this,” I remember thinking. But you know what? In a lot of ways I’m the privileged one with an incredible gift. I read a sweet poem then that summed up a lot of the emotions swirling inside my heart. God has used my special needs son to teach me a thing or two. He is my Holland. Although hard, I’m enjoying this journey, learning about this space I never thought I’d be in. There is beauty here, and grace upon grace when you take time to see and understand someone else’s world. Here is the poem, ‘Welcome to Holland’ that I read a few years ago. Whenever I read it, my perspective shifts a little, allowing gratitude to grow as I take a deep breath, and persevere.
Welcome to Holland
by Emily Perl Kingsley (1987)
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.
redeemed in grace 