How’s It Going? Life in the New Town.

For any of you late to the party, Ryan and I recently made a drastic but highly necessary decision to uproot our lives from rural Tennessee and move towards Nashville.  That’s just how we roll. When something doesn’t work anymore, we fix it, and we fix it quickly.  People have naturally been curious about the transition, how we’re all adjusting to a more populated environment and asking:

  1. Have the kids adjusted?
  2. What about Luke? Have you found more resources?
  3. What have been the biggest changes/adjustments?
  4. Are you and Ryan doing better now that you have more resources?

#1.  Our kids are so resilient.  This crew didn’t miss a beat, and I attribute their attitude to the lives they’ve lived so far.  Life changes, and you either learn to find joy or you wallow in the unfairness.  They have figured this concept out at a young age, and it will hopefully serve them well as they progress through life. We had a few hiccups initially with cultural differences (this is much more of a melting pot than they were used to) and population differences – these schools are much bigger! but they have all made great new friends, Caleb found a job he loves at Pizza Hut, Mya is getting involved with Volleyball, Spanish lessons are occurring on Saturdays, music with Annabelle at the library on Tuesdays, and they are enjoying church activities on a regular basis because church is now only a five minute drive.

#2 Luke.  We thought he would be the wild card, and he is but not like we anticipated!  The school transition was easy, the house transition was easy and so much more convenient with a mother in law suite which we currently use for him and potentially an aid down the road. Those are all the pros about Luke; however – something about this move awakened a monster of curiosity in his restless soul, and he is no longer content at home, which in Luke language involves lots of screaming. We try to get him out as often as possible, but he’s still not happy when he returns.  He does qualify for an aid but unfortunately he’s been on the waiting list with 5 companies since November.  Yes, you read that correctly, five companies can’t find anyone to help with him so we’ve taken matters into our own hands and are currently looking for part time help. As for resources, YES! Huge improvement.  In 3 months we’ve already been approved for respite money which will help fund some of the outside help we’re seeking, our church has a special needs ministry, and there are numerous parks (and slides!) nearby that Luke would love to take up residence at full time if we allowed him to.

#3. Biggest changes/adjustments off the top of my head – abstaining from the convenience and options that restaurants offer.  My wallet and body do not appreciate the over abundance.  I think we got the excitement out of our systems, and now I’m ready to start cooking again (for the most part). Also, city water, yuck! As soon as we can afford it we’re going to buy a water filtration system because we all miss our spring fed well water. I love the simplicity of everything being within ten minutes and especially loving Instacart.  Oh my, what a game changer. I used to spend HOURS a week on groceries; getting them, packing them into the car, unpacking (with a three year old in tow), you get the point. When we moved we decided to swap school lunches for sack lunches to save money. I can only maintain this decision because of the convenience of grocery delivery. Worth every penny.

I also love the simplicity of our house being 2000 square feet smaller than our previous home, and the simplicity of the yard being only 2 acres instead of 30. It feels manageable and cozy and invokes a spirit of hygge (previous post).  I do miss the beauty of our other house; the river in the back yard, the pond and the barns, but the beauty quickly lost its appeal with the isolation and overwhelm that it took to maintain it all and raise 8 kids.

#4. Last question, yes, our mental health has improved quite a bit.  We were previously panicky and anxiety filled often as we felt trapped and isolated with 8 kids and nowhere to go. Here, if we’re having a difficult time or the chaos in the house is beginning to feel overwhelming, we can simply go for a hike at the local state park or a swim at the community center, or enjoy the peace and quiet that the library offers just down the road.  There are options – close options. I joke that I’ve made friends, but they’re all special needs moms so we never see each other; which is kind of true and sad.  As a special needs parent it is much more challenging to get together.

What’s next for us? I’m in a limbo period. I don’t have a clear idea of what I should be focusing on and that’s really unnerving.  I don’t rest well and perhaps this is simply a period in life where I need to learn to lean into peace.  I’ve been more consistent with blogging, my agent is still attempting to find a home for a second book I’ve (mostly) written, and I’m hesitantly gearing up to begin another chapter of The Lucas Project.  And… we’ve been recently chatting with some bigger city folk about a potential family project that could be a’lot of fun. Time will tell. I’ve also been focused on building my social media platforms so that I can be more appealing to the larger publishing houses. By the way, if you don’t follow me on Facebook/jessplusthemess and/or Instagram/jessplusthemess, now would be a great time to start!

Ryan’s busy working on a flip house nearby and detailing the progress in short video posts on his Facebook page. Together we’re about to till a garden, raise some chicks (along with all the kids), and start a renovation project which will involve transitioning our main floor full bathroom into a laundry room/half bath which will eventually open up our kitchen and dining room to provide a big enough table to seat us all.  Stay tuned.

And as always, “just keep livin!”

We Can Do Better In The Bible Belt.

I recently noticed a woman’s angry post on social media regarding a lack of resources for special needs families – particularly in the South – specifically in Tennessee, and I curiously asked, “What states do provide adequate resources for special needs families?” Her response surprised me, “Any liberal state” and then she followed up with a few examples – “Washington, Vermont, California, and New York.”

Interesting. The Bible Belt, the South where we have a church on every corner and every flavor of religion imaginable, Trump country, the land where we strongly admonish mothers to carry an imperfect baby to term because of our beliefs, this pro-life land flowing with pregnancy resource centers, right to life events, and church bake sales is also known to be one of the worst areas in the country for ongoing resources after you give birth to that child in question.

But the liberals – Bernie and Hillary and that whole progressive bunch – they’d rather eliminate the imperfection that they know will cost oodles of tax payer dollars, but if you choose the difficult, ongoing, stressful path of raising a special needs child, this bunch is sure as hell going to help you out. Time for a change Conservatives. Time for a change Bible Belt. Time for a change America.

I am pro life when it comes to the unborn. I’ve proven this with my own flesh and blood, and it isn’t an argument I’m going to entertain with this post; however, I am suggesting that pro-life must extend beyond a mother’s womb. Pro-life should extend to providing tax dollars and fundraisers for the parents who make the difficult decision to choose life for these children. Pro-life should provide ongoing support for the least of these even as they age and especially as their parents age. Pro-life means not placing these families on waiting lists that never seem to end. Pro-life ideally would provide enough support so that we don’t hear another heartbreaking story about a parent who reached their breaking point with a child who could not be calmed and would not be pacified, and we point our judgmental fingers and gasp, “HOW COULD THEY?!” when that panicked caretaker finds a less than ideal solution. Not as a fetus – nope – but choosing to terminate the situation when it’s no longer socially acceptable.

Special needs families need proactive change and soon. How are these changes going to occur? And who should provide the resources? I’m not an expert, but I am a mom raising a child with profound needs, and I have a few thoughts.

1. Special needs caretakers need to stop sugarcoating the journey because no one will help us if we don’t make our needs known. If all we do is talk about how little Timmy is such a miracle or Betsy is a blessing, WHICH THEY ARE, but not share the rest of the story, we are missing an opportunity.  We do our stories a great disservice if we never discuss the difficulties or how we have panic attacks on a regular basis. The experts compare the anxiety of raising a child with special needs to the PTSD often experienced by war vets.  Yes, it can be that stressful.  These kids often have needs that never, ever end and that becomes very disheartening as a parent. Society can’t read our minds. Our cities and towns don’t “just know.” Our friends and family are incapable of understanding if we don’t tell them. There will always be a few who will ridicule us for our truth or our choices, but we need to plow through anyway. Courage my friends, courage. We need to make the realities known, set aside our “bless your hearts” and dive into authentic truths when it comes to special needs.

2. Awareness. Right in alignment with number one. We need to tell our stories. I have a dream of one day being a part of a documentary that will showcase all different ages, walks of life, and cultures immersed in a special needs journey; detailing the joys, trials, happy moments and the difficulties – detailing it all so that the world can no longer claim ignorance. Wouldn’t that be a wonderful resource for everyone? But, in the meantime, tell your story. Stories are what connect us to one another and allow compassion to emerge which will eventually provide resources and support. There can not be change without empathy.

3. Contact your state representatives – even if you don’t have a special needs child! Do it for someone you know. Beseech these political leaders to pass the bills, find the funding, or whatever else they need to do to help these families. Currently, 1 in 59 children has autism and that’s just autism! These numbers seem to increase every year so if you’re not affected by special needs now, you will be soon.

4. Churches – Christ admonished us to care for the least of these, and this includes the weakest members of our society – those who cannot care for themselves – the special needs population. I realize that not every church can afford a special needs ministry, but every church can afford to lend a hand to special needs family in the community. Generally, what a family needs more than anything is a break – just a few hours for a date night or time alone in the bath or a nap. Every church can provide this invaluable resource for at least one family in the community. It doesn’t take any money – just time and patience. If your church does have money in the budget to implement a special needs ministry, do it! This is about the only way a family can comfortably come to church. Or, if an entire ministry isn’t in the budget consider a week of Vacation Bible School in the summer or on a school break.

5. I can’t speak for every special need’s family, but I have spoken to many of them throughout the years and the responding themes I hear are: exhaustion, despair, loneliness, and concern for the future. Most of these feelings can be remedied through a break. Summer care and school holidays are really difficult because most special needs kids thrive with structure, and when you eliminate structure, these kids are often confused. What does this confusion actually look like? For Luke, it involves head banging and screaming. I sometimes compare the scenario to a colicky baby – except Luke is 14, and he probably won’t outgrow these behaviors any day soon. In fact, I worry that as he goes through puberty it will only become worse. Structure is oftentimes a special needs child’s best friend.

6. The future. This is a biggie. I know I don’t want to take care of Luke forever. I will if I have to, but it wouldn’t be my first choice for him or me. I think he deserves better than hanging out with his old mom and dad until his dying day (or ours), but I don’t know what the options are. Most of what I hear involves a waiting list a mile long or a bank account a mile long. I pray this changes and we have viable options before it really becomes an issue in our life.

We can do better for these families. Please consider sharing this post so that as a culture we can make life just a little bit easier for the least of these and their families.

Just keep livin!

The Cloud is Moving – Courage in the Midst of Change.

It oftentimes takes courage to say that something isn’t working anymore, and truthfully, it hasn’t worked for some time for us.

A little over five years ago our family left Michigan for a dream that included a simple life in rural Tennessee. This is how Ryan and I operate – we hear “GO!”, and we go. We married quickly, Ryan moved to Michigan within months of proposing, and we moved to Tennessee after seeing our current house once. We are decisive, informed, and not prone to obsessing much about how our decisions will be perceived by others outside of our immediate family. To reference a Biblical metaphor, we move with the cloud. Continue reading “The Cloud is Moving – Courage in the Midst of Change.”

Why You Should Care About Special Needs Children

 

It can be difficult to understand the complexities of raising a special needs child if this calling is not part of your daily reality. I get it. I never gave these children nor their caretakers a second thought before I had a handicapped child. It’s hard to empathize with a situation without experience.

 

My goal in writing – in books, on the blog, and on social media – is to tell stories that portray all of the aspects of raising a special needs child – the demanding, the taxing, the beautiful, and the joy.

 

There is undoubtedly a blessing. These kids are closer to Heaven than we will ever be with their innocence and child-like faith. They teach us invaluable lessons about the nature of our heavenly father’s love and care for his children. They model joy, perseverance, and faith in quantities us “normal” folk can only dream about BUT –

 

Raising a special needs child is a massively exhausting undertaking as well.

 

A few weeks ago a friend’s 8 year old daughter unexpectedly passed away. This little girl was never supposed to survive; however, these kids often have a way of proving the experts wrong. I recently asked her mama if the new ease of life was haunting because when you live in special needs world, there are rarely moments of ease. It’s like being in a combat zone. You’re always mentally anticipating your child’s next basic needs – hunger, pain, angst, smell, what, where, when, why – all the time. These kids often don’t grow up and become independent so there is no end in sight which can feel overwhelming.

 

One of my greatest goals with The Lucas Project – a non-profit organization to assist special needs families in rural Tennessee – is to educate people on why they should care – even if it’s not a part of their daily reality.

 

“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ Matthew 25:40

 

These children are the least of the least of the least of these. They often have the mental and emotional capacity of an infant. They are usually physically unable to care for themselves without continual assistance, and without the loving intervention of caretakers, these children could not survive.

 

I would admonish you to care about these kids and their families because you don’t have to care, and that’s a blessing.

 

Special needs may not be a part of your daily reality, but it is a reality for 6.7 million children (nces.ed.gov) and often includes:

 

Bathing a grown child

Feeding – either by utensil or tube feeding – often restrained in a special chair.

Diapering a thirteen year old

Wondering at times if one day you’ll be diapering a thirty year old.

Restraining a teenager who has become aggressive due to puberty.

Entering the local ER in the middle of the night to play a guessing game for the next 24 hours as you try to determine the cause of angst in your non-verbal child.

Declining an invitation for a fun event because there is no one to watch your child, and he or she would cause disruptions and outbursts.

Attempting to distract a child who is frustrated and banging his head against his crib.

Sleeping with a baby monitor beside your head for 18 + years

Getting up multiple times in the middle of the night to administer meds, tubes or breathing equipment or to make sure your child is still alive.

Spending the majority of your free time in a doctor or therapist’s office.

Not being alone with your spouse in years because there is no one you trust to care for your child in your absence.

Suffering extreme pain and popping Advil like it’s candy because your child has grown too large for you to comfortably handle, and the strain is taking a toll on your aging body.

 

You should care about caretakers who experience stress, anxiety, exhaustion, and depression on a regular basis but don’t have the funds nor the time to address the problem, and in rural environments, lacking in professionals to even help address the problem!

 

You should care if you live where resources are plentiful because there are people who live in rural communities where resources are sorely lacking.

 

You should care if your children are healthy because there are parents who manage a child’s chronic illness every day of their lives.

 

You should care because we are all a part of this grand body known as humanity, and we have a moral obligation to care for one another, especially the least of these, like our lives depend upon it – because they do.

 

Please consider a donation to The Lucas Project so that we can all begin caring or check out TheLucasProject.org to learn more.

 

Just keep livin.