For Holland

When Jesse 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.

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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.

 

 

Grace upon grace,

April

 

 

 

 

 

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Goodbye to summer (with a few observations)

Taking time to thoughtfully think back about summer before rushing into fall. We’ve already finished almost a month of school, so the summer season for us has officially ended. Emily Freeman encourages other writers to join her on her blog to record what you’ve learned before stepping into another season. I like this approach because if we never reflect on the mundane to the serious, we miss learning from our own experiences, or just to be thankful for what was. Even if you don’t formally make your own list to share, consider jotting down a few things to see how God has provided and blessed your life.

 

  1. June is the best month of summer

The weather in Alabama has yet to reach full humidity and still pleasant enough to enjoy the outdoors. Excitement over the weeks ahead filled with no scheduling or school chauffeuring is at its peak. June is the month I want to do all things summer like eat watermelon, ice cream, take a trip to the beach, and pack as many pool days to the Y as possible.

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  1. I read more during summer vacation

It seems counterintuitive since a lot of my time is spoken for during these months. But reading (especially fiction) was how I relaxed best in my downtime. Jesse and I also visited our local library about once a week so that heavily contributed to my reading habit.

 

  1. Spiritual growth usually happens so slowly you barely notice it

 I usually equate change with results that are immediate or easy to see. But my spirit doesn’t operate that way. Some days I’ve wondered if God is actively at work in my life at all. Recently I was flipping through old journals from 5 years ago. I am not the same person I was then.

As I read those entries I can see now how God used life situations and relationships to shape who I am today. Little by little (sometimes at a snail’s pace) His own are transformed into the likeness of Christ. The best part is God’s promise to not quit on us until He has finished His purpose for us. His faithfulness to me prompts my heart to stay faithful right back.

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  1. Summer vacation is the hardest and sweetest time with my son

 I don’t know how two opposite realities are held together but they do. Jesse is my only child and 6 years old. Most days I am his main playmate and friend. While we did attempt a few play dates over the summer, his autism prevents typical social interaction with his peers, so it is honestly easier to keep things simple with just the two of us on outings.

Completely exhausted at the end of each day, I also realized that this was a season to cherish. He won’t always be this age, this size, forever. Jesse is still young enough where he wants to cuddle occasionally and spend time together. I don’t take that for granted but genuinely give thanks to God for the sweet moments – and even the hard ones. It may be messy, but summer vacation with my son is a very good gift.

 

  1. Laughing relieves stress and keeps me sane

 One of Jesse’s major struggles is his inability to sleep through the night. He either has a hard time falling asleep, staying asleep, or both. By default, I usually wake up when I hear him in the middle of the night, if not multiple times. By the second or third time, I am fully awake and have made the couch a makeshift bed for the remainder of the night.

I start scrolling through Instagram at 3am and find accounts dedicated to parent humor 🙂 Being able to laugh as a parent is key to not losing your mind when things don’t go well. I’m entertained for a while as I wait to drift back to sleep on the lumpy couch, my mood and outlook on life in motherhood a little brighter, and even funny.

 

Grace upon grace,

April

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

Conversation Starters

A boy in Jesse’s class invited him to a birthday party recently. I bought a gift and marked the time/date on my phone calendar. The day of the party we arrived to find a few of his classmates in attendance, which I silently felt relieved that we would know at least a couple of the other party guests. Jesse immediately ran to a girl in his class, who is Hispanic. Like him, she is also autistic with low verbal skills. I had never met her parents before since she rides the bus. Other parents who pick up their children after school usually congregate outside the building under an awning. After almost a year, I became acquainted with a few of them.

I walked up to introduce myself to the girl’s parents and was surprised that they knew very little English. In fact, the mother could say maybe five words in English, leaving her husband to do most of the interpreting which was shaky at best. All I could think about was how this couple must have a hundred questions related to their daughter’s school. I could not imagine how lonely it must feel to live in a foreign country, not knowing the language, while navigating/advocating their child’s special needs education!

We attempted a couple of times to talk but the few Spanish classes I had in high school and college completely evaporated from my brain. Knowing how to count to 20 in Spanish or recite the months of the year was not very helpful in the moment. I wanted to communicate with the mother and by the expression on her face I think she did too. She showed me a picture of their other child and I smiled back. We were reduced to facial expressions and pictures. My heart hurt for her and their family.

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Then it occurred to me that Jesse might feel isolated in a similar way. I have wanted so desperately to communicate with him that it is easy to forget how he must feel too. A book I just read from an autistic boy’s perspective called The Reason I Jump by Naoki Higashida gave me a little more insight and sympathy on this. At thirteen, Naoki transcribed in Q&A form using an alphabet grid with the help of his mother and teacher. The book was later translated into English and has become a national bestseller. I definitely don’t agree with his New Age beliefs sprinkled throughout the pages but the core idea I took away from reading it was that we sometimes limit those who aren’t just like us. Whether it is a language barrier, intellectual, or physical, we often view them as less than the rest of us. Instead of learning what life is like in someone else’s shoes we are quick to treat the disabled or disadvantaged with less respect than someone we can relate to.

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I still do this on occasion to Jesse when I struggle to communicate with him or when he can’t calm down or because bath/bedtime makes him super hyper and giggly. The underlying fact is, when I don’t understand his speech or behavior I’m tempted to give up because we aren’t speaking the same language. It can be exhausting and frustrating. Yet I wonder how many times people with Autism or any other barrier are quickly dismissed because the ability to communicate easily is absent. We assume that there isn’t another way or that the case is hopeless. Reading this book gave me a different perspective, and for the first time, hope. Just because Jesse can’t speak in complete sentences like other children his age doesn’t mean he lacks intelligence or is less of a person. Naoki says,

 

“One of the biggest misunderstandings you have about us is your belief that our feelings aren’t us subtle and complex as yours. Because how we behave can appear so childish in your eyes, you tend to assume that we’re childish on the inside, too. But of course, we experience the same emotions that you do. And because people with autism aren’t skillful talkers, we may in fact be even more sensitive than you are. Stuck here inside these unresponsive bodies of ours, with feelings we can’t properly express, it’s always a struggle just to survive. And it’s this feeling of helplessness that sometimes drives us half crazy, and brings on a panic attack or meltdown.” (p. 109)

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I imagine it might be like someone in a coma who can’t respond verbally or physically but can hear everything going on around him perfectly. His senses are a little thrown off, but mentally the coma patient can comprehend his auditory surroundings. Often doctors, relatives, and visitors talk over the patient as if he isn’t even there.

I’m learning to slow down and intentionally communicate with Jesse – mostly to understand him but also to treat him like I would anyone else without a disability. He’s only six so there will still be wisdom needed (and grace) for training and discipline because I often don’t know exactly what his level of comprehension is. But I don’t want to limit his abilities either. Sometimes that means pushing him a little, to gain confidence. Other moments are more grace-filled and tender, realizing he doesn’t have that specific skill-set yet. But it’s a start in the right direction. Conversation can happen in many forms, not just verbally. For us it looks like a smattering of sign language, spelling words out, hand gestures, pictures and one to two word phrases. We get by. And I am learning that I can’t put him in a box, because he always surprises me by refusing to stay in the mold that society has placed on him.

 

 

Grace upon grace,

April

Grace in the cracks

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Before Jesse was 8 months old he had no trouble sleeping. What I mean is, he slept like every other baby. In the early months, a couple times a night he would wake to nurse. Then came a few longer stretches of sleep. Usually rocking would work or the amazing mechanical baby-swing. Wind it up and he was as good as gold.

I thought we were nearing the edge of the woods in the sleep deprivation world. My mom always said you can endure anything as long as it doesn’t last forever. Her words rang in my ears those 3 a.m. nights that seemed endless.

And yet, somewhere around Christmas his sleeping habits grew worse, and so did mine. Frustrated and foggy-brained, I went into survival mode. Just make it through this day. Steal sleep in the cracks. An hour here, a cat nap there, or just close my eyes for a few minutes.

As Jesse out grew the baby-swing, he struggled to sleep through the night. When rocking didn’t work even his naps grew shorter. He woke up crying most days and I scooped him up, weary and defeated, to cradle him on my chest while we both laid on the couch.

Jesse would often finish his naps cuddled safely in my arms. This forced me to stop everything else and just rest and be present. His breathing became steady and calm again, as I watched his little body relax into sleep. It was in these moments two verses came to mind as I marveled over God’s way of taking care of me:

 

“He makes me lie down in green pastures,

He leads me beside quiet waters”

 Psalm 23:2

 

“He gives strength to the weary and

increases the power of the weak”

 Isaiah 40:29

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            God made me physically rest when I needed to. He does this in a way that isn’t militant or harsh, but lovingly.

Tenderly.

Like a Shepherd over His sheep, God knows what is best for us before we do. And I remember laughing over the irony. I was trying to help Jesse rest as God helped me rest. I was a child in need of a nap!

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We sometimes forget how important physical rest is and that it can affect our spiritual health as well. We think we can “do it all”. It humbled me to find out that I can’t. Something has to give. It was about this time that Jason and I started praying at night for Jesse, and for us as well, to have the gift of sleep. I didn’t realize sleep as a precious gift until it was taken away.

And rest came in ways I didn’t expect. Even though the nights were still interrupted with Jesse’s hyperactivity, God’s grace took shape on that couch during nap time. There were dishes in the sink, laundry to be washed, and a list of to-do items, but the only thing that mattered was the only job I had in that moment: to be still.

And that was enough.

The Lord taught me that I often forget how much I need Him to take care of me as I take care of the sweet, autistic son He has entrusted to me. God delights in ministering to our hearts as well as our physical bodies! He reminds me that He will provide grace even in the cracks.

 

Grace upon grace,

April

The Life We Never Expected

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          The Life We Never Expected by Andrew and Rachel Wilson is an honest confession inside a home with two special needs children – both have different forms of autism. The Wilsons write about real life experiences mingled with sadness and hope. They taught me that it is okay to grieve the dreams I had envisioned for my son; the things all parents look forward to for their kids: little league sports, college, independent living, marriage and grandchildren. Some of those may eventually come true, but right now a typical life is not one of them.

Andrew, a pastor in the UK, is transparent with his own struggles, coming to terms with the life he never expected. All the “big” ministry opportunities he envisioned, traditional parenting, and a regular life, was thrown out the window. Rachel writes in a vulnerable voice, acknowledging that this is hard and messy; but they find moments of humor and sweetness too.

Having a child with any kind of disability is isolating. I feel like I’m in a foreign land most days, unable to relate to another parent’s struggles because we are on completely different plains. When I’m not in the right mindset seeing my son’s typical peers wrecks me. This book has been a lifeline to help me remember that I am not alone. Sleepless night after night? Yes. Multiple therapy appointments? Yes. Hyperactivity, missed social cues, and seizures? Yes, yes, yes. Sometimes it’s comforting to identify with someone else going through a similar situation. I highly recommend this book as an oasis for any parent with a special needs child. Furthermore, family, friends, and the church can glean a helpful inside look on what daily life is like in upside down parenting.

The hope Andrew and Rachel possess as believers is contagious. They live with a mindset focused on eternity – in a world free from autism, epilepsy, wheelchairs, tube feeding, or any kind of suffering. One day their precious children (and mine) will have fully functioning minds where normal conversation is possible. One day they will be finally and completely healed. The Wilsons have given me a breath of fresh air with their raw and truthful words. For that I am grateful.

Here is an excerpt from Rachel:

“We are, at best, sailing desperately into the fog, with ever-changing winds, choppy waters, blank maps, and no real idea what we’re doing.

But God is the Captain. He is the navigator, mapmaker, and expert […] as uncertain as our voyage is, there are solid landmarks ahead that are knowable and concrete because of the Captain.

[…] I know He will journey with us to the very end, at which point everything that is perishable and incomplete will be gloriously resurrected and healed.

So I fix my eyes, not on what is seen but on what is unseen. And I take a deep breath.” (p. 148)

 

Grace upon grace,

April

 

 

6 Things Every Special Needs Parent Wishes You Knew

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“but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out His love into our hearts by the Holy Spirit, whom He has given us.” -Romans 5:3-5

 

I hesitate to even write something like this because I can see how it would easily be interpreted as complaining. However, I think that sometimes when one can serve as the voice for many to be heard, it is beneficial for all. I have met other parents with special needs children and while our stories don’t look exactly alike, this list I think addresses issues most parents feel. Even parents with typically developing kids will identify on some points.

Children are a blessing from the Lord, and as we learn what struggles each of us face, “to walk in one’s shoes” so to speak, maybe there can be room in our hearts for patience, compassion, encouragement, and even prayer toward one another.

 

  1. We often feel overwhelmed mentally.

Feeling physically exhausted goes with the territory of any parent with small children. And you do sometimes feel like you will lose your ever lovin’ mind. But raising a special needs child is especially mentally taxing. There is a steep learning curve for parents to learn medical language for example. There are encounters with neonatologists, neurologists, audiologists, optometrists, GI specialists, geneticists, podiatrists, sleep specialists, along with his general pediatrician.

Then we learn the ropes (and jargon) for therapy with Early Intervention, the “experts” in Autism (or whatever the disability), speech, occupational, physical, and playgroups. We find out what our insurance will and will not cover, and then play phone tag with the insurance companies.

Parents with special needs children are later immersed into the world of education (and there’s a whole set of special terms to learn here as well). Obviously we want the best for our child, and I am personally grateful for the educational opportunities we have been given. But this also involves 2-3 hour long IEP (Individualized Education Plan) meetings with your child’s “team” to write out goals and services for him that are legally binding.

Sometimes when we don’t agree with the educational team about his placement or switching schools (again) there is push back. We are their advocates and sometimes that requires fighting “the system” to do what we feel is best for our child.

Most children with Autism have sleeping problems (as high as 80%). This affects not just the child, but also everyone else in the house. Parents are sleep deprived long past the newborn stage and are expected to function as if nothing is wrong.

 

  1. We worry about our child’s lack of development

We wonder if they will ever become independently functional. What will happen if one or both parents die? What will happen to her once she becomes an adult? Will I still be able to care for her?

Worrying about the future is fruitless because no one knows the future except God. But the fears still haunt us and for me it calls for daily trust in the One who designed my child.

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  1. It can feel very isolating

We can’t carry on the same conversations with other parents about our kids. While yours is playing tee-ball and learning about rockets, mine just learned to drink from an open cup without spilling. We celebrate in a big way those little milestones because it’s a small step toward progress for him.

I have to work at not feeling angry or cursed in isolation just because others “don’t get it”. Honestly, it isn’t their job to understand my situation although it would be nice. I have to remember that Jesus sees me and He has carried us through so far. When Christ lived on earth He was misunderstood and even rejected. The Lord sympathizes with my heart.

 

  1. We love our kids!

It pains us to see them struggle or not quite fit in but its just part of the deal. Other special needs parents I know Google like crazy, research like grad students, take their child to a renowned doctor states away, sit in a waiting room while their son has a 6 hour operation, inquire over the best therapy places in town, or special sports teams/activities and attend parent support groups.

These parents are warriors for their kids, utilizing all the resources available to them. All so they can give their kids their best chance to thrive.

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  1. We may not be great at relationships

This goes back to the isolation thing. It is very hard to connect with someone who looks at you as if you’re from a foreign land when you tell them about your day-to-day activities. And sometimes when we sense a lack of grace in how we raise our kids, we draw back. If you thought there wasn’t a manual for parenting a typical child, there definitely isn’t one for raising a special needs kid. It is a vast frontier of uncharted territory for us and we are doing the best we can just like you are.

I also just do not have the mental energy at this time right now. Even scheduling lunch with a friend outside the regular routine makes me want to hyperventilate.

Friends and family who stick by us understand if we don’t call enough or visit enough. There is already a load of guilt for not doing “all the things we should”.

We long for community and a support system, and some of us have it, but some are in a season of life where survival mode is the only option.

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  1. We connect differently with our kids

Like I said before, we love our children, but for me personally, communication is an obstacle. I understand (and interpret) what he says some of the time. My little guy is persistent though and will repeat the same word a few times hoping I’ll make sense of it. Sometimes I do, sometimes I don’t, and we just move on both a little disheartened.

We tell our children we love them over and over, even if we never hear it back. We play their games, the habitual ones (spinning, anyone?), because we long to meet them where they are, so we step into their world.

It’s mind numbing for sure, but for that time he looks in my eyes, holds my hand, falls asleep on my chest, or squeals with delight? Well, that makes all of this totally worth it.

To the parent of a special needs child, you are doing a great job just for getting out of bed each day ready to take on the daily challenges and demands. Don’t give up on your baby.

To others who know of someone with a child who has special needs, show them grace. Understand that their lives function differently than the rest. Give them a hug or shoot them an email of prayer/encouragement. Parents need it!

Hopefully we can all take a step closer toward loving others right where they are, however messy or hard. It is in those moments the light of Jesus Christ is reflected back to the ones you reach out and serve. And isn’t that what we all want in the end? For the world to see Jesus in us, because He is the very best thing for every parent and every child and every person.

 

Grace upon grace,

April