Spreading Joy and Celebrating Ability on Halloween

My husband and I became foster parents soon after the birth of our first son.

Our family rapidly grew to a beautiful mix of wonderful littles who also happen to live with autism, food allergies, feeding tubes, wheelchairs, relational/attachment challenges, extreme anxiety/panic attacks, and the list goes on and on.

The unique needs of our children, coupled with the fact that we don’t appreciate the creepy aspects of the holiday, meant that we would need an out-of-the-box approach to Halloween.

Ignoring it completely seemed wrong because some of our children had knowledge of the holiday from previous homes and were looking forward to a celebration.

We felt it was important to find a way to acknowledge a day that had been special to them in previous years.

We did know that we wanted to take the focus away from darkness, fear, and the things our children are unable to do, instead focusing the day on fun, safety, and the spreading joy.

These concepts blossomed into a tradition that began last year and I hope continues in our family for many years to come. In the days leading up to Halloween, our family spent time baking cookies, coloring handouts, and creating fun costumes.

On Halloween day, we loaded up our van and headed to the local nursing home. Our sweet kids delighted the nursing home residents by visiting them one-by-one, showing off their fun costumes, and delivering them a special hand-colored card and yummy cookie.

Our children with food allergies and feeding tubes did not have to be excluded from candy and treats, our kiddos with relational/attachment challenges were not being taught to approach stranger’s doorsteps, our little one with autism did not have to obsess over what candy she would or would not receive, and there weren’t any tricky curbs, porch steps, or broken sidewalks to navigate with wheelchairs.

More than anything, our family was focused on how we can show love to others instead of focusing on our own gain and this caused joy to overflow from every angle.

However, just to make sure the experience was complete, we did hit the grocery store on the way home and let each child pick out a special treat of their own.

On a holiday that can tend to be focused on so many of the things that my children are afraid or unable to do, my family found a special way to celebrate our uniqueness and ability to bring joy to others—and have a whole lot of fun doing it.

Dear Epilepsy..

Dear Epilepsy,

Unfortunately, you and I have been acquainted for far too long.

From the time of my first memories, I remember my ability to recite seizure protocol as the sister of a brother who battled hard with you.

From friendships during my school days, to working as a respite provider, to employment at a center that served individuals with special needs, to becoming a special education teacher, and now as a mom to multiple children who wear the diagnostic label with your name on it, I have stood witness to more seizures than I can count.

While part of me has grown used to your cruel grip on the ones I love, I will never become comfortable with your dark presence.

I may calmly stand by a convulsing child, simultaneously switching between speaking comfort and listing off instructions for those nearby, but one more piece of my heart splinters each and every time you rear your ugly head.

While I may seem brave, informed, and capable on the outside, my inside screams, “IT’S NOT FAIR!”

How dare you wreak such havoc on these precious bodies.

How dare you rob individuals and families of their outings and escapes.

How dare you steal away several days’ worth (or more) of wellness—sometimes in a matter of seconds.

How dare you extinguish normalcy beneath the weight of fear and unknown.

I hate you. I hate you so much.

But you know what?

You. Won’t. Win.

With every seizure, while part of me breaks, my will grows stronger.

You have changed me and wounded me, but you have also caused me to stand taller, roar louder, and charge ahead more bravely in search of answers, relief, and healing for the ones I love.

Because of you, I am constantly researching–learning the wonders of our bodies, medicine, nutrition, and science.

You remind me each and every day that quitting is not an option.

I will keep fighting for healing and freedom.

You have broken me and forced me to my knees, but that is where the grace of God has met me, lifted me, and whispered, “You have not lost.”

You have humbled me, teaching me that life is more fragile than I once believed.

You have taught me to press on in the dark and dance a little extra in the light.

Your despised presence in my life has forced me to be mighty when I didn’t know I could be and to treasure the beauty of the mundane I might have otherwise missed.

Because of you, my children who do not have epilepsy are more compassionate, more aware, and more educated than any other toddlers I know.

I hate you.

But I appreciate the lessons I have learned in spite of you.

I will not quit.

You have not won.

Whether my dear ones are free from you on this side of heaven or not, know that you are not the victor.

As much as I wish the case was otherwise, I’m sure we will see each other again soon.

When we do, know that, while you may seem to succeed for a short time, we will fight back.

The story of each and every person you clench is so much greater than the chapters you attempt to hijack.

There is much you are capable of stealing, but there is so much more you are not.

Where you leave ashes, beauty will rise.

Where you usher in chaos, peace will take over.

The preciousness of humanity and life itself is not up for debate and cannot be taken or undermined by you.

Try as you might, you will never truly triumph.

Until we meet again and with upmost sincerity,

Me

DIY Weighted Sensory Fidget Lap Pad

As a mom to children with sensory processing disorders, I am always looking for new tools to equip my children to help them cope with the world around them.

I have children who are sensory seekers and children who are sensory avoiders.

Unfortunately, it can be a challenge to find affordable products that meet their needs.

Thankfully, I am learning to be creative, and I am finding that many tools can be created from everyday products around us.

Recently, my little girl has been having trouble sitting in church.

She squirms all over the place and takes off running laps when she gets the chance.

She enjoys being held and squeezed tight, but my husband and I aren’t always available to provide her with this input for the entire length of time she needs to sit still.

She enjoys playing with small toys and uses them to stim, but sometimes she throws them without warning.

As I was brainstorming all these issues, I decided she needs something weighted that we can attach to some of her toys with the option of switching them out.

A pillow animal seemed like the perfect thing to make into a weighted lap mat.

It is an ideal size, can be filled with quite a bit of weight, and is still compact enough to not be obnoxious.

Then, I searched for a way to attach her toys to the pillow’s back so she couldn’t throw them; for this, I found coiled keychains that worked perfectly.

Here is how to create your own weighted lap pad to which you can attach small toys/sensory fidgets:

You will need:

  • Pillow Animal
  • Scissors
  • 3-6 coil keychains with a clip on one end
  • Sewing needle
  • Thread
  • Dry beans (or other weighted filler)

What to do:

  1. Cut a small slit along a seam in a discreet location on the pillow animal’s main body and remove all the stuffing. Set the stuffing aside.
  2. Remove the rings from the coil keychains
  3. Choose how many keychains you would like to attach. Choose what locations on the top of the pillow animal you would like to attach the coils. Hand sew each keychain onto each chosen location through the last loop (on the opposite end of the clip). Use LOTS of stitches and check frequently to make sure the keychain is being firmly attached.
  4. After you have attached all the keychains you desire, pour dry beans into the hole in the pillow animal until a desired weight (not fullness) is reached. You do not have to use beans—you could also use rice, gravel, beads, etc. Once the pillow animal has reached the weight you desire (our pillow animal is around 9 pounds), place as much of the stuffing back into the pillow animal as you wish. Less stuffing will make for a floppier lap pad that molds to the child’s legs more and may fold easier. More stuffing will offer a stiffer, more cushioned lap pad.
  5. Sew the hole in the pillow animal tightly closed with stitches that are close together. You can do this by hand or with a sewing machine.
  6. Attach desired toys to the keychains on the pillow animal’s back and place the finished lap pad on child’s lap for grounding weight and comfort.

World Breastfeeding Week in the Special Needs World

Breastfeeding. That word embraces a million different memories, hopes, fears, and joys for me.

As a foster parent, I have been a mom to many children in the last two and a half years.

Most of these children have been children who have special needs.

I currently have a beautiful, vibrant, wild home brimming with six children and sometimes one or two more.

Each child is unique—they all have different needs, different gifts, and came to us in different ways.

Some walk, some roll. Some speak, some do not.

Some eat by mouth, some eat by tummy tube, and one of them is currently breastfed.

While breastfeeding may come easy to some, it certainly did not come easily to me.

I have two biological children and with both babies, my body has had to work extremely hard to feed them.

When my body is in the midst of breastfeeding, I have to constantly think about what and how much I eat, drink, sleep, and exercise.

I have to take multiple supplements, visit a specialist, and be extremely diligent in order to make it possible for my body to make the milk my babies need.

I have been told time and time again that I should quit.

There is absolutely no shame in bottle-feeding and I believe that it is in fact what is best for many babies.

But for me personally, I wanted to breastfeed and it has been something worth doing anything to make happen.

I find that my decision to breastfeed is especially important to me as a mom to children with special needs.

My children with special/medical needs demand so much of my time and energy.

I am so thankful for the opportunity to care for them and learn from them.

However, sometimes I worry about my babies who don’t have a diagnosis—the ones who give up time with mom during every appointment, treatment, hospital stay, emergency, or just the daily grind of extra routines and care their siblings with special needs require.

For me, breastfeeding has been a gift I could give back to my biological children.

My youngest daughter just turned one and is still nursing a few times a day.

Oh, how I treasure these moments! Since the day of her birth, I have loved that several times a day, I needn’t do anything but sit, snuggle her close, and feed her the milk I worked hard to create.

Of course, life (especially the special needs life) isn’t always perfect or clean cut.

I have nursed with one hand while conducting feeding tube feedings, dressing changes, therapies, calming techniques, and cleaning up more bodily fluids than you would care to know about.

But more often than not, breastfeeding is the time that I give back to my little one and focus only on her as medical machines and meltdowns wail on in the background.

It is my way of letting her know she has me–all of me–if even for just a moment.

Even though it adds work, fatigue, and chaos to my circus, breastfeeding also adds a beauty, purpose, and unique connection my baby and I need.

As mom to such a special bunch, breastfeeding is a way that I fill my cup at the same time as I pour myself out for these little people.

I will treasure these moments in my heart for a lifetime.

To My Children With Special Needs

We have been through a lot together.

Together we have cried hard and loved harder.

We have been side-by-side in the valley, on the mountaintop, and every place in between.

You have taught me more than all my years of school and every book I’ve read, combined.

You have peeled back the mask on humanity and exposed to me both the beauty and the darkness of the human heart.

Your smile has gifted me with the strength I needed to push through impossible days, and your dependence has reminded me how fulfilling it is to live beyond my own selfish desires.

I’ve held you as you have brushed against death and I’ve witnessed your fierce will to live.

You have been my hero–the embodiment of strength and bravery that I can only dream of becoming.

You have reminded me that so much of what this world deems valuable is worthless rubbish in comparison to the beauty of the few things that last for eternity.

You have a way of unveiling raw intentions and motives, teaching me which relationships are worth fighting for and which ones are best to let go.

Because of you, I love your (foster) daddy more than I ever thought possible.

I love the way you dance without restraint, speak the truth in a hundred different ways, and laugh hysterically during the quiet part of the church service.

I love how you are truly unphased by what other people think and instead live fully from your heart.

I love how goals, restrictions, expectations, and limits are meaningless to you.

You take one day at a time and take each new joy and challenge in stride, reaching heights above anything anyone could have anticipated.

When I feel lonely, you snuggle in close and tell me I am loved in a million ways without saying a single word.

When I feel like I’ve failed, your life reminds me of purpose and grace.

When I feel afraid, you flash me a grin and your bravery seeps into my soul.

I love how you have never judged another, but lavish love on all—even those who don’t return it.

You exchange kindness for hatred, you smile at those who ignore you, and you don’t take to heart those who underestimate and criticize you.

You have grown in me an immense appreciation for simplicity and sweet mundane moments with the ones I love most.

You have taught me to fight, to be a mama bear, and to not accept failure.

When my selfishness takes over and bitterness nips at my heart and mind, you never hesitate to forgive me and love me completely in return.

You, more than anyone, have taught me who Jesus is; how much I need Him; and how much He loves us.

He was so good to share you with me.

I hope you always know without a doubt that you are one of the most beautiful things I could have encountered on this side of heaven.

You are brave.

You are funny.

You are unique.

You are mighty.

You are kind, humble, and real.

You are YOU.

I look up to you and I am so very of proud you.

With so much love,

Your (foster) Mom

Island Living

As someone who grew up conscious of and frequently involved in the special needs community, the loneliness that individuals with special needs as well as their caregivers may experience has always been on my radar.

Yet, when my husband and I chose to become parents to children with special/medical needs through foster care three years ago, we were greatly and painfully caught off guard by the island we found ourselves on.

Perhaps we were naïve.

Perhaps we were shell-shocked after being freshly graduated from a small-town Christian college which excelled at community or maybe we believed that we would be exempt from isolation, as we are both outgoing personalities who naturally attract and pursue meaningful relationships.

Regardless of why or how, the truth of the matter is that we found ourselves lonelier than ever before as we limped along, learning to navigate the waters of parenting children with special needs.

We ached for others to see the immense beauty we were surrounded by and also to understand the depths of our weariness and struggle as we poured ourselves out for these children.

We still have times of feeling quite alone, but the last few years have not been without a plentiful harvest of the fruit of learning.

Here are seven ways I have learned to combat loneliness while caring for children with special needs:

Adjust Expectations

I believe some of my deepest hurt in the beginning of my special needs parenting journey came from not realizing the great degree to which existing relationships would change.

There were many people that I assumed would be more than happy to continue walking alongside us—they would enjoy getting to know our children and still ask me out for an occasional girls’ day or cup of coffee.

I slowly realized that not only does becoming a parent alter relationships but becoming a foster parent can really ruffle some feathers and becoming a foster parent to multiple children with special needs….?

Whoa.

So, I’ve changed my expectations.

I do my best to keep up with old relationships, but I do not expect the majority of people to understand or desire to be involved.

I cling hard to the few who have offered a full embrace and do my best to no longer ache over ignored invitations or offers to socialize that never come.

Be Vulnerable

When my husband and I first became parents, I remember being so fearful of sharing about much of the heartache we experienced, including loneliness.

I didn’t want to cause friends and family to feel like we were blaming them or that they were required to dive fully into the life we lived.

Also, because we were the ones who chose to be parents of foster children and children with special needs, our expressions of struggles were often met with warnings and urges to step back instead of encouragement and support to carry on.

I felt like I needed to prove that we could handle this.

I have now come to a point where I trust our calling and don’t rely as much on the approval of others.

While there will always be people who do not understand or encourage, I realized that choosing to pretend like we do not need help robs those who are able and willing to support us of that opportunity.

I now choose to be honest.

I tell people that what we do is very hard and I am open about my loneliness at times, especially in settings where I know those listening truly care and desire to help.

It was amazing to discover a few friends who were ready and waiting on the sidelines, aching to be a part of our unique story, just waiting for permission to meet needs we had not made known.

Educate

Sometimes people don’t mean to pull back but are driven by fear of making a mistake while interacting with your family and its unique needs.

Consider hosting an “open house” in your home.

Invite friends and family over and allow them to spend time with your children in their element.

Create handouts with tips and instructions for caring for your children, in the event that any of these people would ever be interested in assisting with your children’s.

Take time to show off the equipment your children use and maybe demonstrate a medicine/feed/treatment routine if needed.

Make it fun and highlight the ways your family and children are just like any others.

Keep it light by offering snacks and a low-key environment, but also make sure to answer questions and educate.

An event like this may help reduce or eliminate the anxiety others feel and the fear of the unknown about your children’s needs.

Resist Comparison

“Comparison is the thief of joy.” ~Theodore Roosevelt

When I am in my own home surrounded by my own people, I am SO HAPPY.

With six children under six and three with severe special needs, our daily life is more crazy and chaotic than I can even begin to explain to those on the outside.

But it is so very beautiful and so full of joy.

It is also hard—VERY hard.

But it is OUR hard.

At the times when I do feel myself struggling with loneliness, it is often due to my comparison of my life with the lives of others.

Social media, while an amazing tool meant to connect and bring together, is also a highlight reel that brings into the open all that we didn’t even know we wish we had, driving wedges and wounds in deep.

Setting a few specific, short times in the day to spend a few minutes on Facebook or Instagram, versus access all day long, has revolutionized how I use my time and fosters a mindset of contentment.

Without a constant scroll through social media and its endless flow of the selfies of friend groups taking a weekend trip, visiting national parks, or grabbing a meal together, I don’t even know what I am missing and I am much more likely to lean into and fully experience the beauty of the life I live with my own outside-the-box crew.

Take Advantage of Non-Typical Socialization

While I try to limit technology at times, I also find that technology allows me to feel not so alone in many ways.

While coffee dates and hiking trips may not be frequent occurrences, things like phone calls, messaging, and video calls allow me to connect with friends and family without having to find caregivers or even change out of my sweats.

I also have found great encouragement through online support groups.

When a child with special needs comes to us, I search online for support groups associated with the child’s conditions and find a wealth of information and listening ears—treasures hidden in the hearts and minds of a group of people I may never meet in person.

I have also cast aside my expectation of every time of socialization involving no kids and being able to leave the house.

I have been known to invite friends over for a cup of coffee while kids nap or to the park to stand and talk while we watch the kids play.

Lean on your faith

For me personally, my faith is what carries me day in and day out.

On days when I have hit rock bottom, I find the strength to take one more step in the knowledge that all that I do is for a greater purpose far beyond myself.

On days when I know that no human eye sees all that I do in a day and no heart understands how lonely I feel, I repeat the phrase, “His (God’s) eyes are on me.”

I believe that His eyes are on me, even if no one else’s are, as I love my children in the hardest hard–giving bath after bath, cleaning up vomit for the fifth time in a day, administering medications and treatments and tube feeds, barely surviving after yet another sleepless night, cuddling little ones after seizures, and wondering what the future holds.

I am never truly alone.

Reach out First

I believe one of the greatest means of combatting loneliness is to never stop thinking of others before yourself.

It can be easy to sit and wait for someone to be the first to initiate contact or support and I have done this far too often.

If you feel lonely, allow it to spur you on to reach out to someone else.

Choose to be the friend first.

I like to think of what I wish others would do for me and then I choose to be the first to do that for other people—send the first text, offer the first invite, send the first encouraging card.

There is something powerful in not being the victim of loneliness but instead allowing it to be the tool that places you in the shoes of others as the agent of change.

Being the caregiver for someone with special needs is a hard, amazing, excruciating, beautiful role.

It is unfortunate that it often times is a lonely role as well.

But perhaps, as we bravely take on day after day, loving unconditionally, rejoicing in the victories, rising from the setbacks, and revealing the incomprehensible beauty of those who stand out, someday, the world won’t be able to resist leaning in with open arms and hearts.