I Know.

As a caregiver to a child with intense and profound special needs, I know that my voice is relevant in this space because of my experiences.

I know that I sigh deeply when people who have no experience with autism offer suggestions on behavior modification.

I know that I want to throttle well meaning folks when they say to “hire help” when there is very little help to be hired or the available help comes at a hefty price tag that a family of ten can not easily afford.

I know that I want to scream when people suggest that we “take him with us – he’ll be fine” knowing he won’t be fine and will instead holler “ALL DONE!” until we agree to leave.

I know that it broke my heart as we tried different medications to thwart the aggressive behavior that resulted after the abrupt ending to Luke’s school year.

I know that it drives me bonkers when my experience with Luke is compared to raising a toddler. No, it’s not the same. A two year old kicking and screaming – kind of cute. A fifteen year old violently thrashing and screaming, not so cute.

I know that my heart often races as passive guilt is heaped upon my already heavy shoulders when we decline an invitation because of finances or weariness or just plain lack of giddy up.

I know that the gossip whispered about time spent away from my children – frequent getaways in order to be a somewhat sane mother who is able to do this exhausting endeavor day after day, hurts.

I know that I could weep every time I think about Luke’s future, my future, – fearful of what opportunities or resources await or don’t await us after 18.

I know what it’s like to be a caregiver of a teenage son with profound and complex and difficult needs. I know that my voice matters. My vulnerability matters. My experience matters as I speak into this space.

I hope and pray that my voice will be a part of many voices that will create change that is desperately needed in America.

However –

I do not know what it’s like to be black and so I will quiet my voice, quiet my judgmental thoughts, quiet my preconceived ideas and opinions, and I will listen. I will listen to the voices of wisdom who can teach me. I will listen to their experiences and their stories, and I will learn.

This I know.

To learn more about how you can help caregivers please visit www.thelucasproject.org

A Resurrection Only Occurs After A Death.

When Ryan and I met in 2010 we were in a season of death with the passing of our spouses, & this death included a burial of lifelong dreams and expectations.

The next few years we enjoyed a resurrection as our lives merged and birthed new realities: our marriage & family, a simple life in rural America, the birth of a book, a teaching career, a non profit & another child. Lots of growth & beauty.

We now find ourselves back in a season of decay; broken bodies over the past year: Ryan’s, mine, and Luke’s; broken ideals and dreams as we restructure & determine how we’ll proceed, lots of unanswered questions and concerns & the burial of systems that no longer serve us emotionally or spiritually, and we wait because we know. We know because we’ve been here before – this is familiar soil, deep & dark & rich soil where we’ve been planted and now we await our reemergence into the light.

We wait for our resurrection.

And we are confident that it will arrive in due time because that’s how life works.

Everything remains in motion; a continuous movement of death and resurrection, waves upon waves washing away the brokenness and moving what remains to the shore – natural disasters and coronavirus and despair not excluded – it’s all involved, collectively and individually; ashes to beauty and back to ashes again, circular movements until the maestro sweeps his baton for the last time & bows his head in holy reverence, that moment when his beloved creation leans into the finality & releases a labored breath – bursting through the birth canal into an everlasting resurrection.

And until then?

We just keep livin.

Gathering

The past couple of months there has been a lack of peace in my home, and I often thought, this mothering gig really isn’t my thing anymore. 4 teenagers, one with profound special needs, a pre teen, a 10 year old, a 9 year old, and a four year old who has no lack of confidence. It was a lot. Between health and job and hormonal issues which led to emotional issues and arguing and backtalk and snarkiness and bad attitudes and the older kids teaching the younger kids things they had no business knowing; the whole thing was a big honkin cup that overfloweth… or perhaps, it was more like a kitchen sink or the bathtub spilling over & it was causing significant damage. And we – the parents – should have immediately steered the ship back on course, but instead we bickered & bitched & complained as we held on for dear life to the raft boat the kids threw us when they made us walk the plank.

This sudden change in the family dynamic was attributed to a few circumstances: one, everyone was getting older and hormonal and becoming more opinionated & two, our move to an urban community where the kids had opportunities for activities, sleepovers, and jobs and the focus slowly shifted from the family unit – a strong unit we had in rural America where we relied heavily on each other because it was all we had – to individualized focus “You take care of you, and I’ll take care of me” & as long as the older crew took ownership of themselves: jobs, food, school, homework, play – we didn’t question much. We reasoned it was simply a stressful time in our life and “this too shall pass” and then…

Then, a few weeks ago, I said to my husband “I really miss family dinners.” You see, with the introduction of jobs and late nights and neighborhood kids to play with and everyone fending for themselves, and in turn each individual grabbing a bite to eat here and there, dinner time as a family had become almost obsolete – the rare exception in our family since our conception in 2011. For 8 years, we have religiously sat down at the dinner table and enjoyed a meal together – religiously until the move this past December. When Ryan and I married, we knew this tradition would provide a foundation to our success as a blended family – the art of gathering around a table for a home cooked meal and offering a blessing for not only the food we were about to eat but also for his faithfulness through our lives. We knew that the table would provide the foundation for community and connectedness in our newly blended home and the absence of the table would only leave a void and disconnect.

We recently reincorporated family dinner night. It looks a little different than it did in rural America, and we eat later – around 6 now because of play time with the neighborhood kids. We’ve made it a requirement for any child who is home that evening, and my oh my, what a difference we’ve seen already. Attitudes have changed and lightened as we laugh around the table partaking in fresh pasta and warm bread. I like my kids again & I think they might like me too as the focus has shifted, and we get to know each other on a heart level – on a real level- rather than just co-existing.

There is so much chatter in the world today about how lonely we all are, how depressed and isolated and longing for community, and this is not only true for ourselves as adults, but it’s desperately true for our kids. Our homes need to be safe places of respect & connections and what better way to foster these desperately needed essentials than around a table? What better way to encourage conversations? And what better way to show love than to invest our time, our most precious commodity, in them? Give it a try. You won’t regret it ❤

Just keep livin.

Mom! Don’t Bring Luke!

A few weeks ago, on a particularly warm summer day, Ryan and I announced to our crew –

Kids! You’ve been so helpful lately and did your chores without complaining so we’re going to have a family fun day at a water park!

Kids responded with glee and excitement and Yays! all around and asked –

Who’s going to watch Luke?

We’re going to bring him, we replied.

He’ll enjoy getting out of the house. 

Mom!!!!! NO!!!! bellowed the sounds of despair. We’ll have to leave early if Luke comes!

This is a constant dilemma we face.

We brought him.
He did make it very difficult and tiring.

We did have to leave early because Ryan and I were absolutely beat after a few hours of fun.

We arrived around 11:00 a.m. because this particular event had free food (major bonus with our crew!). We loaded all eight plates full of grub, and then Ryan retreated to the furthest corner of the park, in the shade, to feed Luke so that the stimulation of all of the people didn’t overwhelm either of them and so he wouldn’t try to grab the food off others plates (Luke not Ryan). I picked a table near the food because I knew my tribe was going to take full advantage of the free factor.

Mya took charge of Annabelle as she skitted about, and the rest were free to roam independently. Ryan and I took 20 minute intervals engaging with Luke. A word here – Luke is no longer content to sit. EVER. He has declared a mutiny on his stroller and wants nothing to do with it, but he needs constant supervision and assistance for his and others safety. We took turns introducing him to the parks plethora of activities – 5 slides, numerous water features, an accessible swing, acres of land to explore, lots and lots of hot dogs because he wouldn’t eat the chips or watermelon or popsicles.

About 3 hours later Ryan and I looked at each other and we knew – we were done. Physically, mentally and emotionally, and we also knew our kids wouldn’t be happy about it.

Let’s give them the 30 minute warning

My wise husband suggested.

We did.

The moans of disappointed began –

Luke always makes us leave early! Why can’t we find a babysitter for him? Why can’t you and dad drive separately? (Which maybe we should have but the park was about 45 minutes from our house)

WHY DO WE HAVE TO BRING LUKE? They wailed

And we responded, frustrated as well and exhausted, questioning the excuse we offered-

Because he’s part of our family, and we need to include him occasionally. 

We currently do not have a solution for this problem.

It is what it is.

We do feel the need to include Luke – even at the expense of his siblings happiness, but we understand their frustration as well.

This post is simply to bring awareness; the little things that special needs families struggle with such as decisions that sometimes cause pain for other family members. I do believe that our children will be better human beings in the long run for having Luke in their life as they have patience, flexibility, and independence that other kids may lack. They have also learned compassion and acceptance towards those who might not be just like them – those who might cause a bit of a disruption to their happiness – those like Luke.

 

Just keep livin.