Category Archives: special needs

yes: the hymn of a special needs family

Posted on by July 25, 2022

The day we met Reagan is the day we made the decision. We’d read all the translated paperwork and what little history there was to give us. We understood about delays, physical, emotional, and cognitive. We knew there would be years of catching up to do.

And then she walked into the room, and all that changed. No eye contact, a little overly compliant in some ways, and constant stimming movements that indicated institutional autism. Still, at almost seven, a toddler.

yes: the hymn of a special needs family

In retrospect, the paperwork we’d received was a positive spin on things, leaving out crucial information that we filled in later as best we could. And I guess I followed its lead, because during that first week of getting to know Reagan, I blogged only a few times and put the same kind of spin in those posts. There was too much to think about and process. And I don’t remember when Fetal Alcohol Syndrome came into our daily vocabulary, but we knew that first day that her needs were not what we thought we had signed up for.

That first day, meeting her in her orphanage, we realized we needed to make a different kind of decision.

Will you still say yes? the Lord asked us. And we did. We have said yes every day for the last ten years. It has been imperfect, victorious, clumsy, gritty, and stubborn, but it has always been yes.

So I guess I don’t like it when professionals who are new to our family decide to lecture me on things I have lived with all these years while they have sat comfortably behind a desk.

“FAS can be very…ahh…” The doctor hesitated, apparently looking for the right words. “Difficult…to live with. And…long-term…there are many issues that need to be considered –”

“We adopted Reagan ten years ago, and it was a two year process. We’ve had twelve years of considering. We know what we signed up for, and it wasn’t to foist her off onto some government program as we get older.”

“Ohhh, well, good. Yes, I completely respect that.”

But then she hesitated again. I was pretty sure I knew where she was trying to go, and she confirmed it with her next sentence.

“The, um, challenges involved with Fetal Alcohol damage are lifelong, and I don’t know how old you are…”

Why is it that professionals with letters after their name and only two sentences of information about our kid feel it their duty to tell a parent the obvious? Which one of us has spent years caring for the child, twenty-four seven?

Frustrated with the beating around the bush, I brought out the chainsaw to help her out.

“We already know we will never be empty nesters.” No cure, irreversible damage, yes, we get it.

“Ohhh, okay,” she said, obviously relieved.

But I wasn’t done. I’m not sure what kind of idiot parents she usually deals with, or if she’s just another professional without personal experience who assumes parents need the expertise of someone who has spent more time studying special needs than actually living with them. But ignorant condescension fries me.

“We’re not contacting you because we’re new at this,” I said. “We’ve been her parents for a long time. We’re not suddenly at a loss for what to do with her.”

“Oh!” she said, surprised. “Why are you contacting me?”

“Because apparently Reagan needs to have this testing done in order to stay in her current school program.” It’s a hoop we have to jump through, nothing else.

“Oh!” she said again, and once on level ground, we finally got into the details of the assessment.

But really, this assessment is more than a hoop. It will be an IQ test and several other “instruments” (alas, not the musical kind) that test Reagan’s cognitive functioning and achievement. It will be results, and labels, and numbers. It will be many things I don’t really want to know, and many other things that we already know that will suddenly, miraculously, become official because an expert who will spend less than an hour in Reagan’s presence will finally verify them.

Yippee. Pardon me if I don’t applaud.

I am completely torn about it. We adopted her to keep her from being a cog in a wheel she would not have survived. We homeschool to keep our kids from being plugged into systems that strip nearly all individuality and innovation. But Reagan is now officially in high school, and to keep her current homeschool program that she enjoys and is gaining small measures of victory in, she must be slapped with codes and spectrums and assessments to validate her presence there.

“It’s just a number,” the doctor hastened to reassure me. Yes, I agree…but it’s so much more than a number, too. It is like the brain scan conundrum – for years we toyed with the idea of having one done, curious about the amount of damage Reagan is actually living with. But if we saw it, would it matter? Would it be a relief? Or would it leave more questions than answers?

Here’s the real question: Would it remove our faith for a miracle? That’s the one that causes bile to rise and my eyes to water. Sometimes we know too much, and it gets in the way of what God wants to do.

I had a dream once, years ago, that Reagan could speak clearly, perfectly, just like you and me. Long, clear sentences, enunciated words. In the dream she was an adult, a beautiful woman.

She’s getting there physically, at least. Sixteen and beautiful, but not an adult. Without divine healing, she will never be an adult.

Behold, the Lord God comes with might,

and his arm rules for him;

behold, his reward is with him,

and his recompense before him.

He will tend his flock like a shepherd;

he will gather the lambs in his arms;

he will carry them in his bosom,

and gently lead those that are with young.

– Isaiah 40:10-11

Every year on her birthday I am astounded by her new age, but I think we’ve finally hit the point where it no longer surprises us and that grieves me, too, because it feels like jadedness. In a few years it’ll be, “Oh, Reagan’s twenty.” Later, it’ll be “Reagan just turned 27.” And people will continue to drop their jaws in polite disbelief, not understanding or having any frame of reference for her abilities, or lack of them, or for how far she’s come, or what she went through to make it all so difficult in the first place.

In typing that, I pull my hands away from the keyboard, and cover my face with them, and weep. It is the hymn of a special needs mom.

I do not know if she will change. I do not know if we did enough, or are doing enough. I know what I would tell a friend in the same place, of course, and what you would probably tell me, but I also know there are so many things I could and can be doing differently.

But like most special needs moms, I am tired. Exhausted. Overwhelmed. I feel lazy if I take a break, but I need breaks, so I take them, and then I accuse myself of laziness. I waver between radical hope and weary cynicism, and the whiplash between the two makes me dizzy and confused. The future is coming fast and I can’t control it. She will always need help, and we may not always be here to give it to her.

For crying out loud, I know.

I know that when we signed up for this, we signed our biological kids up, too, and I also know that wasn’t fair for anyone. But what Reagan was born with and went through and lives with isn’t fair, either. For her to live at all required a family to step up for her, and God called us to be that family.

So there is no fairness; there is only goodness and endurance and love.

There is the sacrifice of praise.

There is the Word, and His promises in it that never fail and are always fulfilling. As long as she is young, He will lead me gently.

There is the Yes of Surrender that makes room for the miracle, and sometimes the first miracle is what happens in us as we give it.

Bible thumping: how we see beyond the surface

Posted on by June 25, 2024

There’s a kiddo on the deck standing with one hand on the door, and one hand holding a rag. It’s been a rough few days for that little girl; she’s supposed to be working off a consequence but instead she’s just standing there. You can’t force her to move faster (or at all), but sometimes you can remind her what she’s supposed to be doing. And sometimes it helps.

But sometimes it doesn’t.

bible thumping: how we see beyond the surface

She’s not really a little girl, I know. She’s sixteen. But she’s also three. And sometimes seven, and sometimes anywhere in between.

Thanks to our chickens we have a new compost bin arrangement, but she couldn’t figure out how to work it. And in spite of being told not to, she dumped the compost on a small garden bed instead, destroying half the veggies and a couple sunflowers I’ve been growing for two months.

She doesn’t always remember things she’s been told, and sometimes she does but chooses not to do them anyway. Problem solving and critical thinking are really hard for her, and rare occurrences.

As her mom, one of my biggest challenges has been learning to correct her in love, and lead her toward maturity and growth when she has no inclination to go there.

Can we blame her? We often want to do the easy thing ourselves, without the excuse of brain trauma. But look around; we’re reaping the consequences of a culture obsessed with ease, prioritizing rest over righteousness at every opportunity.

Last week on social media I shared a talk by a prominent Bible scholar and translator on women in leadership, and based on the responses of those who have only given the Bible a surface reading, you would have thought I committed the highest form of blasphemy. I can’t begin to tell you the amount of hate and accusations that poured in from complete strangers who have no idea who I am, what our family has taken on, or the everyday situations we deal with (which admittedly are probably a mystery to many of you who are new here because I don’t talk about them as often lately). It was a sight to behold from people who claim to be Christians, who claim to be passionate about the Bible, but are in fact extremely selective on how they actually study or practice what it says.

What is that Scripture? Oh, yes: “They will know we are Christians by our scathing insults, accusations, fragile egos, and self-righteous condescension.” Ain’t nobody got hate and meanness like a so-called Christian’s hate and meanness.

I am giving you a new commandment, that
you love one another; just as I have loved you, that you also love
one another. By this all people will know that you are My disciples:
if you have love for one another.

– John 13:34-35

It’s just easier to not be challenged, to not learn something new, to not think critically about what we believe and what the Bible says and whether or not those two things are actually in alignment. But Jesus is continually leading us forward in love and maturity, even when we have no inclination to go there.

But you denied the Holy and Righteous
One, and asked for a murderer to be granted to you, and you killed
the Author of life, whom God raised from the dead. To this we are
witnesses.

– Acts 3:14-15

Do we just want to be right? Or do we want to be righteous?

Pharisees have been bringing death and destruction for a long time; people who miss the forest for the trees and offer to call fire down from heaven have been rebuked by the Lord for their misplaced zeal from the very beginning.

And now, brothers, I know that you acted
in ignorance, as did also your rulers.

– Acts 3:17

You can’t force people to think harder or to love better (or at all), but sometimes you can remind them what they’re supposed to be doing. (And sometimes it helps. But sometimes it doesn’t.)

So we go back to the Word. Not just a surface reading that takes in the obvious, but a daily, deeper study that looks at all the things – the ones that don’t make sense, the ones that seem to contradict, the ones that are inconsistent with the rest of the Word when taken out of context. We take the time to ask Him what they mean, and we take the time to listen.

If you feel threatened by the basics of studying the Bible and learning something you didn’t understand before, why are you reading it at all? Do we go to God’s word only to be patted on the back? Do we only go to church to be spoon-fed what we already know?

For though by this time you ought to be
teachers, you need someone to teach you again the basic principles of
the oracles of God. You need milk, not solid food, for everyone who
lives on milk is unskilled in the word of righteousness, since he is
a child. But solid food is for the mature, for those who have their
powers of discernment trained by constant practice to distinguish
good from evil.

— Hebrews 5:12-14

Friends, with all love, you shouldn’t be reading my stuff (or any stuff) if you just want to be told what you already know. What a waste of time that would be. And if you don’t think women should be speaking, teaching, or sharing about Jesus, I’m not sure what you’re doing here in the first place.

If someone touts unbiblical principles that conflict with God’s word and character, yes, you should call them out on it. But if what you are calling out is just a deeply held belief that is contradicted throughout Jesus’ life and all of scripture, you should look more closely at the context of that.

If it causes insecurities to rile up within you, spewing hateful, holier-than-thou things at others, you should look more closely at that, too.

If any issue is so sacred to you that looking at the Bible’s original language, context, and culture actually frightens or angers you because you cannot consider it from any other angle than the one you have held on to, then that issue is a sacred cow and it probably needs to go to the grill. If it causes you to say things to perfect strangers online that would make an atheist smirk, that cow needs put out to pasture until you can examine it without raising your blood pressure and displaying spiritual brain trauma.

Do we just want to be right, or do we want to be righteous?

(One reader pointed out that those who are afraid of a little research, deep thinking, and contrasting perspectives are exactly the kind of people who, yes, shouldn’t be teaching or leading. This is why we can’t have nice things, Timothy.)

If you believe context and culture don’t matter and everything in scripture should be interpreted exactly at face value, you should probably avoid Job, certain Psalms, Ecclesiastes, several sections of the prophets, parts of the New Testament, and most public social settings.

(Oh…and definitely beware of Song of Solomon. SO DANGEROUS.)

Because context and language matter.

Truth matters. Sometimes you need to pay attention to see it, though. And yes, if you’ve read the Bible, you’ve seen women speaking, leading, and teaching in it with approval, in spite of a few verses that seemingly oppose it on the surface.

But wait, should we have to work to understand the Bible? Well, what does it say? Here are just a couple of examples:

It is the glory of God to conceal things, but the glory of kings is to search things out.

— Proverbs 25:2

In that same hour he rejoiced in the Holy
Spirit and said, “I thank you, Father, Lord of heaven and earth,
that you have hidden these things from the wise and understanding and
revealed them to little children; yes, Father, for such was your
gracious will.”

— Luke 10:21

Yes, we should read and expect God to speak to us. And also yes, we should take the time to dig deeper when we notice things that don’t make sense, or that we don’t understand, or that are confusing.

Because if we claim to already understand everything we believe, we probably made it up — and we need to consider who we’re bowing down to.

But if you don’t think language, culture, and context matters, fine. No problem at all.

Just know that you ought to greet everyone in church on Sunday (and, well, every day, since it doesn’t specify) with a holy kiss.

No, no, no, it doesn’t say handshake, side hug, or fist bump — it says a holy kiss.

Have fun with that.

xo

turning it up: support for adoptive families comes to audio

Posted on by April 11, 2023

Here’s a confession that those of you who are regular readers here already know: I go in phases of sharing about adoption and special needs. Sometimes I forge ahead in it and share several posts here or on social media, and other times I pull back to recuperate.

It’s hard to share. It’s super personal. The issues are painful. But those issues need to be seen.

Not everyone will stop to notice. Most will probably keep scrolling — no shame, we all need a little mindless scrolling sometimes — and some will click “like” on the posts without even reading them because they’re too long.

I get that. I skim or skip posts sometimes for the same reason.

But we miss things when we’re always too busy to stop and notice them.

And adoptive, foster, and special needs families are collapsing from people being too busy to notice them.

These families are in our churches and neighborhoods — until they’re not. Until they give up on church or they give up on marriage. Until it all becomes too much because people are so busy scrolling past, giving a thumbs up to the concept of adoption but having no clue about what’s really going on in these families.

How do we move upstream to prevent divorce, depression, abuse, and suicide? How do we draw people into the church and community instead of driving them away from it?

By seeing people. But we have to look past the surface and stop scrolling for a few minutes to do it.

So I’ve collected my adoption posts in one place here. They are full of the stuff under the surface, behind the curtain, while we try to walk the line of privacy and transparency. They are by no means the full story, but they are enough to give the respectful, caring observer plenty to think about…and to send a message to other adoptive, foster, and special needs families. Here’s that message:

YOU ARE NOT ALONE. And you’re not going crazy. You are seen and loved and understood. 🖤

I know some of you are done with church. Some of you are done with marriage. Some of you, for the sake of younger children and your entire family, have been done with adoption and had to disrupt.

(If you’re not one of those families, that means they had to give up their adopted child to be adopted by another family — and face all the judgment, condemnation, and assumptions from a society that doesn’t know what goes on behind the scenes and is also unwittingly ignorant of the role they may be playing in the disaster and heartache these families endure.)

None of this should ever happen. Adoptive families should never feel alone and be left by the communities around them to quietly implode behind closed doors.

We can intentionally be part of the solution. 

And we need to be, because there are plenty of people who seem intent on being part of the problem, too busy reveling in their know-it-allness that they cannot fathom there might still be something to learn about this — like the Goodreads reviewer who gave Upside Down a mere 2 stars because I am “only an adoptive mom” and not a trained, lettered professional who actually (smirk) knows anything about attachment issues, mental health, or adoption.

That’s right; instead of studying for years behind a desk, I have only lived this out in my own home, 24 hours a day, for more than twice the amount of years it takes to get a bachelors degree. Clearly I have no expertise on the subjects of adoptive family support or adoptive parenting worth sharing.* #blessherheart

When I originally wrote Upside Down as a series of posts, I got emails, messages, and phone calls every day from adoptive, foster, and even biological parents who were going through the same stuff — but they thought they were alone. These were their most common responses:

“I thought we were the only ones who went through this.”
“I don’t know who to talk to.”
“I didn’t know how to explain this.”
“I thought we were alone.”
”I wish everyone we knew would read this.”

But you know what the most common response is from non-adoptive/foster families? It’s this:

“Whoa. I had no idea.”

No wonder these families feel alone.

It’s past time to change that.

And now there’s no excuse not to, because Upside Down is now available in audio (as you read that, you should hear it in a victorious sing-song voice, like TA-DAHHH!) and the first three segments are totally free and full of the inside scoop people needed yesterday, before they did that thing that triggered the adoptive kiddo to regress. So grab them here and share them with your friends, teachers, pastors, nosy neighbors, favorite aunt who stillll doesn’t get it, and anyone else who needs to know how they can truly support adoptive and foster families without unintentionally causing further harm.

Because we’re gonna change this thing. The world will see that what adoptive and foster families are doing is vital, but the work cannot be done without understanding and support. And we shouldn’t have to anymore.

*In case you’re wondering, I have similar inept, unprofessional, raw, untrained experience in pursuing God while being a mom of many, dealing with special needs and fighting depression and encountering other messy life circumstances in motherhood — so you should *definitely* stay away from Oh My Soul and ABIDE and Work That God Sees too, since I don’t have the right letters after my name and therefore have nothing worthwhile to share in those, either. Seriously, those books are only for the rest of us. xo