admitting we need help {a.k.a. the big, scary ask}

Hey, my friends,

It’s Friday night (as I begin this draft), the kiddos are asleep, it’s frigid outside, and I’ve ever so lovingly kicked our pup, Rocky, out of “his” chair and into his bed so I can sit by the fire to write this, likely the most surreal (to me) blog post in my writing history.

We’re launching a GoFundMe campaign this weekend. For our family. I’ve shared the meat of our story here, on our GoFundMe page, but for those of you who’d like a little more detail, I thought I’d try and give some of that here on my blog, where I’m “home.”IMG_0380

See, in the last number of months, life has pressed in on us from every side, it seems. I mentioned in my last blog post, I think, that I haven’t wanted to blog like a special needs mom. Like it’s my identity. And it’s true — it’s not. I’m not defined by the intensity or impact of my children’s needs.

However, they have come to the forefront of our lives so much in recent months, that we simply cannot pretend anymore that they are a smaller deal than they are. We cannot try and live like a “typical” family with “typical” children, and I think we’ve been sort of trying to do that. But I’m realizing at some kind of crazy new level — we are not that.

I’ve also been forced to realize recently that God is quite clearly calling (and if you know me, you know I don’t use that word flippantly) us into a season of focusing hardcore on addressing the mental/emotional/neurological wellbeing of our family.

We need help, and we need to hone in on getting the right kind of help, for every single one of us, with a tenacity and intentionality that we’ve never had before.

Our kids’ needs and the intensity thereof, the demand those needs place on Stan and me, has impacted us in ways I’m not even sure he and I are fully aware of. I mean, we’re aware to a degree, but only to a degree.

Stan and I both struggle with anxiety, both are under physicians’ care for it (I am more so than he is). I struggle with it in a few different forms. I’m pretty sure my migraines are at least partially anxiety-related. I also deal with some depression and fatigue.

These are issues that are exacerbated, if not almost completely brought on by, the impact of our children’s difficulties on our lives. Stan and I need to seek more intentional help in these arenas of our lives, too, which I’ll talk a bit about toward the end of this post.

driving and crying

Tuesday of this last week found me weeping, driving Isaac (late again) to what would be his last day of (“regular”) school, realizing anew the extent to which each one of us needs therapeutic treatment – treatments, plural.

Stan and I had been talking for several days about the necessity of taking out a loan in order to make all of it happen, as the great majority of the therapy that will be most helpful to our children will not be covered by insurance, and what was hitting me was how hard we’ve worked to get out of debt, and the number of years, maybe decades, it would take for us to pay off the loan we would need.

Overwhelming ain’t the word, y’all.

I pulled it together for a minute that morning and dropped Isaac off (after somehow, miraculously, peeling him off of me and allowing one of the office managers at the school to walk him to class. Poor buddy — it just shattered my heart almost daily, the level of his anxiety over school).

The tears came again as I drove around with Maia, running errands, and as they did, this whisper in my heart — ASK. 

What? Seriously?

It is infinitely more appealing to somehow pull ourselves up by the bootstraps, take out a loan, no matter how long it takes to pay it off, and do. this. our. selves.

Asking for prayer is something I’m pretty good at now, which is growth for me. Asking for financial help? Seriously, Lord?

ASK. Your friends love you.

Ugh. Y’all, I wrestled. And cried. And prayed. And wrestled s’more.

And then I called Stan. And this is harder for him than it is for me. But he said yes. Ask.

Oh my word, the deep breathing and anxiety that have gone into making an ask like this, you guys.

Yet there is absolutely no way forward with our children, with the intensity of their difficulties, apart from going to drastic lengths to help bring healing, and much more significant and intentional help with coping skills, to the developmentally atypical and traumatized places in their brains.

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our children’s needs

In case you’re new to our story, our 7-year-old son Isaac’s needs are more clearly defined (High-Functioning Autism Spectrum Disorder – per his psychiatrist and therapist; OCD; PTSD; Generalized Anxiety Disorder). Isaac has been in therapy and on meds to treat his anxiety for nearly 3 years, and within the last year, we’ve had to add another medication to address his needs from a different angle.

The ways in which his anxiety and his Autism-related challenges, in particular, impact his life, and our family’s lives, are honestly innumerable. {He is also brilliant, insatiably curious, and intuitive like you wouldn’t believe. An incredible kid. Mature beyond his years in many ways.}

Our 4-and-a-half-year-old daughter Maia’s needs, while becoming more and more dramatically visible by the month, are less clearly defined at this point. Her new therapist has asked us to obtain two, possibly three different evaluations for her (a developmental eval, plus one or two others). These will be critical to her therapist and her doctors in correctly diagnosing the “roots” of her struggles so that we can precisely treat and equip her to grow in the areas where she needs the most help. {Maia is also incredibly creative, affectionate, and tenderhearted. A total sweetheart.}

our day-to-day reality

Due to the sensitive nature of some of our children’s difficulties, we have to limit the specific behavior-related information we share publicly at this time, but we do want to be as honest as we can with you about some of the ways that their struggles impact our family’s life.

This is so, SO uncomfortable for me — this level of transparency. I hate sounding like I’m complaining. But I do want to pull back the curtain at a level at which I haven’t before, to give you a more authentic picture of life in our family, for a couple of reasons:

  1. People with special needs kiddos need to be known, to be seen in the midst of their day-to-day trenches. We need our loved ones, our friends, to listen, to want to know what our life is like. Being known and cared for this way saves our lives. (<– That is not an exaggeration.)
  2. People who’ve not experienced first-hand parenting kids with atypical needs can grow in understanding, empathy, the ability to just reach out and extend kindness, toward a very large demographic as they learn a little about the lives of those who’re raising kids with atypical needs.
  3. I want to bring a little more understanding and clarity to WHY I talk about us needing the level of professional help we say we need. The amount of therapy and treatment we need.

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So, here I go. Bear with me.

  • Sleep loss. The kids both struggle frequently with insomnia due to anxiety and general dysregulation. We do a lot with essential oils, our weighted blanket, and a number of other natural solutions, to little avail. When I post on Facebook asking my friends for prayer, there are very often quick results, with whichever kid is sleepless returning to sleep fairly quickly. Still though, the sleep deprivation often leads to terrible behavior struggles the next day (both for child and parent – ha).
  • Are we crazy?? Many of the kids’ most challenging behaviors are exhibited in the privacy of our own home, where their guards are completely down, with only immediate family present. In absolutely any other environment, these behaviors will almost never come out. So friends, church family, extended family — no one else sees what is really happening. It’s so difficult to coherently explain to anyone, to feel really known in the midst of all this by anyone except Stan (or Stan by me), because we adore our children, think they’re amazing, and for the most part don’t want to expose the details of their most difficult moments. And because no one else experiences our reality the way we do, it’s hard at times not to question whether those we love think we’re crazy.
  • Sibling relationship dynamics. Though Isaac and Maia fiercely love one another, our kids’ needs and respective lacks of impulse control trigger each other like I can’t describe. I’ll leave this one at that.
  • Sensory struggles. Due to his sensory-processing struggles, Isaac’s eating habits are, well, terrible. They impact his health. We have done our best over the years to encourage growth in this area, and he now eats a few fruits, and one vegetable: carrots. This is a massive, massive victory. Isaac can’t handle smelling, even seeing certain foods (if you’re eating yogurt, salad, berries, etc. even kind of near him, he literally asks you to stop, get it away from him, etc.). Needless to say, we need help. We are pursuing intensive occupational therapy for him, not just for his food-related difficulties, but to address many other sensory-processing/Autism-related difficulties. Bottom line – we’ve gotta get this kid healthier on so many levels.
  • Respite. Stan and I are worn out. All the time. Indescribably so. The drain and exhaustion impact our marriage, our ability to parent, our friendships (massively), our hobbies and passions, our souls. Maia’s new therapist is after us hardcore to get regular (every 1 to 2 weeks), intentional time away from the kids. (Our answer of “we get time every 6 weeks to 3 months” wasn’t good enough for her. Ha – go figure.) But we can’t just ask anyone to come hang out with our kids for several hours. Honestly, the only people we can have babysit our kids anymore are people who are willing to really hang out with us as a family, learn our kids, become educated about their needs, how they work, learn when they need to be “corrected” and when they need still more help calming down… etc. It’s no small request — “hey, ya wanna come babysit a few hours?” {It’s also not a small thing financially, either.}
  • Social relationships. We’ve found ourselves extremely limited in who, and where, and how we hang out with friends. This grieves us, because we LOVE being with our friends. We love board games and coffee and tables full of snacks and having our house chalk full of people and laughter. Oh man, I miss those days so much I could cry, writing this. But our kids (and honestly, our tired, aging-too-soon selves) can’t handle that life anymore. The kids require over an hour and a half of our time at bedtime, at the same time, every night. They require routine, routine, routine. Guests can sometimes throw them off-kilter in a big way. And I’m not just talking about evening hang-outs here at our place. Ya never know who our kids are going to interact with inappropriately in public, how they’re going to behave in a restaurant (yikes), at someone else’s house, etc. In the last 5 years, we have gone from being the most everyone-invited, always-open, always some kinda game night or worship night goin’ on, kinda people, to virtual hermits. And it feels like survival. It’s the way we have to live right now. We still love our friends. SO much. And need them. Sigh… I so hope this aspect of our lives evolves a little differently before too long, somehow.
  • My time. I’m trying to remember what it feels like to relax a little. I know I’ll rest again one of these months, but right now, my every free moment is demanded by paperwork and phone calls: psychiatrist, therapists, OT’s, trying to find clinicians for evaluations for Maia, more therapists, still more therapists, Isaac’s school… Oh, and speaking of school…
  • (Pre)schooling. A few weeks ago, we had to pull Maia out of her much-beloved preschool, with zero notice, due to a sudden change in the enforcement of a particular policy, the handling of which made us very uncomfortable. Long story. Suffice it to say, bam — we went from 4 mornings a week in a pre-K class she loved, with friends she adored, to homeschooling with me, all the time. A huge, huge loss for her. Ugh. :( (Since we realized the funding we’d previously allocated toward preschool for her could now be designated to cover a portion of the therapy she’s just started, we decided not to put her back in pre-K before Kindergarten. Hard decision, but therapy is much more important right now.)
  • More schooling. I alluded above to the fact that Isaac has just this week had to be completely pulled out of his brick-and-mortar school (where he attended all of Kindergarten and half of first grade), because his anxiety has flared up SO extremely, so quickly, and become paralyzing to him. (You can read more about that here if you’re interested.) As of this week, we are full-time “virtual schooling,” via Douglas County Schools here in Colorado, at home. Y’all, the learning curve and the workload for me, getting him ramped up into this new school, has just been unreal. Oh my gracious. We will be okay. We’ll get into a rhythm, have daily and weekly schedule charts that incorporate both kiddos, and we’ll make it work. But I cannot describe how overwhelming it’s all been, and then the added dynamic of both kids at home, all the time. Which reminds me…
  • My own mental health. I’ve shot super straight with you here before about my struggles with anxiety and depression as my kids’ special needs have become more and more intense. These last couple of weeks, I’ve had to increase my doses of a couple of my anxiety medications, and go on one new one (per my doctors’ instructions — not my preference, but I want to be wise and exercise good self-care, too). Woohoo. Y’all. I am humbled. Humbled, and weak, and at the end of myself, like, all. of. the. time. More than, I think, ever in my life.

Yeah, definitely. Ever.

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And yet, I’m somehow okay, too. Kinda. I’m making it, one day at a time. Stan’s making it, too. We’re watching old TV series and laughing together as often as we can, just an episode or two, late at night, when we should be asleep. I’m waking up in the mornings and listening to Psalms on my audio Bible, usually with one or both kids in bed with me while Stan’s in the shower.

I’m clinging to minimalism as a lifestyle because it helps preserve my sanity — Throw away, donate. Throw away, consign. Repeat.

The kids and I listen to worship music in the car (or sing Life Is a Highway at the top of our lungs). And we talk about Jesus, about knowing His heart, every chance we get. Maia is learning to know Him, y’all. Just in tiny bits and pieces, I’m seeing it spring to life — this hunger to know His heart for her. Gah – it undoes me.

about the GoFundMe – the nitty-gritty

Like I said above, our goal is to spend this entire year pursuing health for our family, at whatever levels we can achieve it, with the best resources we can obtain, as intentionally as possible.

I have completely stepped down from all leadership roles at our church, am no longer on staff, in order to dedicate all my time and energy to our kids and to pressing into all this stuff for our family.

In the spirit of transparency, I want to share with you our projected costs for one year of the care and treatments we foresee pursuing.

Notice the link to information on Neurofeedback therapy – Neurofeedback is fascinating and we have connections with a large number of people who’ve seen incredible results with it. It’s a new enough therapy, however, that it’s still considered “experimental” by insurance companies, unfortunately. But for our situation, after lots of research and other avenues pursued already, we feel it’s crucial.

Therapists and doctors keep telling us, “put on your own oxygen mask before you help your kids.” We’ve been doing the opposite of this for so long, and we’re seeing the results of it on numerous levels. So, for this year, I definitely wouldn’t say we’re placing our needs before those of the kids, but we’re trying not to virtually ignore our own needs anymore. You’ll see a tiny bit of this shift in the list below.

List of needs and price estimates for one year:

  • Neurofeedback for all 4 (40 sessions per child; 30 per adult): $19,200
  • Maia’s evaluations (combined cost): $6,700 (one-time expense)
  • Maia’s weekly therapy: $6,500 (entire year)
  • Isaac’s weekly therapy: $2,400 (entire year)
  • Isaac’s monthly psychiatrist appts: $600 (entire year)
  • Dana’s medication increase: $600 (entire year)
  • Respite care (every other week): $2,500 (entire year)

Notes: There is also a decent chance, depending on how Maia’s evaluations turn out, that we’ll end up needing to pursue another type of therapy for her in addition to the therapy she’s currently receiving. Cost: Unknown.

There’s also a chance we’ll need to pursue another developmental evaluation for Isaac now that he’s older. No way to know for sure at this point — should find out in next couple of months — but it’s likely. Clearer diagnoses = more resources available = more help and healing. Cost: approx. $3,000.)

Here’s a link to the GoFundMe page if you’d like to help out financially.

ALSO: Would you consider sharing the GoFundMe page with your friends? It’d mean so much to us.

A last thought or two: I’d be remiss not to tell you that one of the things our family has found the most healing is taking low-key vacations together. The mostly non-commercialized, out-in-nature kind. For 7 months now, we’ve been planning (and are still planning) a family road trip in June.

Our old stompin’ grounds in Kansas City, a quick stop in St. Louis, my hometown in North Carolina, and then the NC Outer Banks and Wright Bro’s Memorial are our destinations.

Our kiddos have never seen the ocean, and Isaac is passionately fascinated by marine life. They are both over the moon excited about the beach, about Gigi and Grandpa’s house, and about seeing Kansas City again. (It’s been 3 years, but there are lots of places we used to adore hanging out as a family that Isaac remembers well and wants to visit.)

In light of ALL these recent developments, financial pressures, and therapy needs, Stan and I seriously considered canceling our vacation plans. But when we thought more about it, what stuck out in our hearts was the fact that family pulling-close-together-times like these have always been powerfully healing and connective to us, and how deeply we, the 4 of us, need this experience together.

So we’ve decided to continue setting aside little chunks of cash toward our trip in June, whenever we can, and I’m so praying we’ll still be able to make it happen.

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more than I can say

Oh man, my friends. This is not only the most surreal post ever, but quite possibly the longest. If you’re still reading, I adore you. Thank you for listening, for caring for me and my family. And thank you for your prayers, for continually allowing me to ask for prayer, and for considering whether there’s anything you might feel moved to do to help our family financially as we try to move toward some breakthrough together.

Mostly, just thank you for your support, period. In any way you have it to give. I need you, and I am grateful for you, more so than I can say. Truly.

Love you guys,

Dana

P.S. Whether you’re able to contribute financially or not, sharing our GoFundMe page with your friends on Facebook (or via email, or however you want) is hugely helpful. Thanks again, y’all.

This entry was posted in anxiety, Community, Learning Authenticity, mental health, Parenting, self care, special needs parenting, Uncategorized. Bookmark the permalink.

20 Responses to admitting we need help {a.k.a. the big, scary ask}

  1. Ginny Kiser says:

    I read it Dana. I think it’s good that you have shared and I know there will be people who will help either by praying or with finances. I hope my visit will not be a burden to you. ❤️Mom

  2. Kim Adam says:

    How well I know about this kind of struggle! While our kids are not dealing with exactly the same issues, we do share a lot of things. We did feeding therapy with one of mine when she was younger and it did help with a few things but mostly she still just eats what she wants, or else she just won’t eat. She would literally starve herself if served only “healthy” foods. And she’s almost 17 years old! We use a lot of Boost and Pediasure around here to make sure it impacts her health as little as possible. My youngest (age 13) is dealing with massive anxiety and adoption-related issues, as well as real, physical problems on top of that. She hasn’t been to school since before Thanksgiving and now has a homebound tutor for a couple more weeks. After that I don’t know exactly what will happen. She doesn’t like me out of her sight for very long. She did go through some sleep issues a couple of months ago where she would literally wake up at 1 or 2 in the morning and come to room and wake me up from a sound sleep to have me come lay down with her until she fell asleep. And that’s IF she had actually been asleep. She might have just been in her room awake until that time. I’ve been trying to write a blog post about how our world has shrunk and I just can’t get the words in order yet.

    I don’t tell you all this to be a downer – just that I get it. I really, really get it. People with neurotypical kids may try but they just don’t understand the day-to-day illogical nature of parenting these kids. I commend you for getting the help you need while your kids are still young enough to LET you. My youngest absolutely refuses therapy of ANY kind and there is really no way to make her participate. I get therapy twice a month and my 16 year old has a therapist if she needs to see one. I take anti-anxiety meds myself. There’s no shame is trying to take care of ourselves. You keep putting one foot in front of the other, girlfriend. <3 and hugs!

    • danalynnb says:

      You are NOT a downer, Kim. Absolutely not. I can’t tell you how your understanding of my world is a blessing to my heart. I’m so, so sorry, though. This stuff is brutally, gut-wrenchingly hard. Grace to you guys. Thinking of you and praying for you.

  3. Scot Brown says:

    Ginny and Dana,

    Cindie and I read your whole post. We are praying for y’all. Cindie and Ginny need to talk. I’ll PM to Ginny with phone numbers.

    Love y’all,
    Scot and Cindie

  4. Carol Leek says:

    Dana, so many memories were triggered as I read this! Being parents to just one child with Asperger’s has been fraught with struggles and successes. All I can tell you is that you are your children’s best advocate – just don’t forget your own needs in the process. And, so glad that you trust us to share in your burdens and praying that He will change them to victories as well as financial blessings!

  5. Taddy says:

    Love you guys. My heart is hurting with you and I am praying for healing, wisdom, breakthrough, freedom and peace!
    Father please hold these precious 4 tightly and send angels to comfort them and protect them. Thanks for the miracle that is in the making. You are still a faithful father and savior!

  6. Charlotte says:

    Prayin’, Dana.

  7. Anita Ojeda says:

    I’m praying for you and your family, Dana. I’ll pass the Inn formation on through my social media channels, too.

  8. Tara says:

    Dana, this is a lot. It can be so hard to ask for help but sometimes that’s just what we need to do. Thank you for trusting us with your story. Praying for all of you.
    Tara recently posted…Sunday Blessings 167My Profile

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  11. Leslie says:

    Dana, this is such a huge load for you. I really commend you for your transparency and honesty here in the midst of going through all the things you are facing. That is a God thing and will surely help others in similar situations. I’m know God will bless you for your obedience, even when it’s so uncomfortable of a thing to do. I’m going to stop right now and pray for you and your family. ((Hugs))

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