Parenting in Crisis

I was shopping at Costco last week with my Nora, and (as most Costco trips go) the longer I roamed the aisles and filled that big ol' shopping cart with glorious amounts of bulk food items and paper goods, the more unwieldy it became.  While I was scoping out the children's pajamas in the clothing section, I came upon a cute little girl, with a thick fringe of brown bangs (not unlike the kind I sported as a little girl) and I made an abrupt stop to keep my cart from plowing her over.  I guessed her to be maybe 3 1/2 or 4 years old, and I gave her a smile, as I saw and heard her mother scolding her for wandering in front of my cart.

"That's okay!" I assured the other mom, "I have three kids of my own.  I get it. And she was not a bother to me!"

"Three!" she responded, "you have your hands full!" she said

"I do," I agreed, smiling, and added, "but they are a blessing."

"Well.  They are SOME of the time." she replied.

In the next moments, I responded with a candor that is characteristic for me in my interactions with strangers and new acquaintances... and sorely lacking in discretion (which is certainly a discipline in my life that is begging for growth and improvement).  But for better or for worse I opened my mouth and said,

"Well, I'll tell you what. Six months ago, my husband fell off a 15 foot ladder, sustained a spinal cord injury and his life changed forever. But he is making an amazing recovery and I don't think he could have gotten through these difficult months nearly as well if it weren't for the motivation and smiles that our three children have afforded him."

Ooops.  Had I really just said that?  Had I just reprimanded a poor unsuspecting woman who had probably just had a rough day with her pre-schooler? Heck, I know that pre-schoolers (even cute, curious ones with fringe bangs) are notorious for pushing boundaries, trying to usurp control from their parents and being inflexible and demanding.  Did I really have to make her uncomfortable with our big dramatic spinal cord injury story that is about as heavy as that big cart I was pushing around and almost ran her daughter over with?

To this fellow, Costco-shopping mommy: I don't think you will ever read this, but if by some strange coincidence you do, please receive my apologies for blurting that out.  It was impulsive, preachy and uncalled for. I am embarrassed and I am sorry.

But, if any kernel remains from my display of candor in Costco... if any good stays with me from that memory, it is this: Raising little children is hard. Raising little children in the midst of family crisis and upheaval is harder than I could have ever dreamed.  Sleepless nights with a teething toddler, behavioral challenges that are out of this world with my older two, their innocent and heartbreaking questions shooting straight through all of my fears and confusion when our world as we knew it was crumbling down and taking an unrecognizable form.  Coordinating childcare when needed, attempting to keep some of our homeschooling routine, getting them to their own doctors appointments, dance classes and art classes. Getting them to bed at night before double digits, talking them through their traumatic memories from the day their daddy fell and was whisked away to the hospital on a fire truck... Fielding all of this while trying to support and advocate for Darin and learning to provide care for him that I never dreamed would be required of me at the age of 34. No doubt about it.  This has been complicated.  And crazy hard.

But our three sweet babies.  Lucy. Collin. Nora.  They are gifts from the hand of God Almighty, vessels of His grace, and healing balm to our souls.  I don't know if they will ever know how much they mean to us, now more than ever, unless or until they have babies of their own someday. 


Everyday I stumble as their mother. Every day, there is some way that I don't do right by them. But I hope. And I pray. That they too will see and receive grace upon grace poured out over them from God in Heaven and if Darin and I get to administer some small portions of that grace as we parent them in the midst of these challenging and difficult times, we consider it a beautiful privilege and honor.

xoxo,

Sometimes Fear Traps Us in a Dungeon

Darin had recently been transferred out of the ICU.  It had been over a week since Lucy and Collin saw their daddy whisked away on a fire truck and in a couple of days they would see him for the first time since the accident.  It was a daunting task, but I knew I needed to start explaining to them that their daddy's injury would mean permanent changes for him and all of us. I showed them a picture of their daddy immobilized in the ICU complete with an NG tube, all kinds of monitors, and a picc line.  I told them that when he came home, he would be in a wheel chair and probably wouldn't be able to walk yet (if ever). I told them that no one but God knew when he would be able to come home from the hospital.  For a five and seven-year-old, it already seemed like an eternity since they'd seen him.  I was not prepared for all the questions that would come from them, particularly from Lucy, when I gave them this information.  Here's a sampling from one of our conversations:

"How will Daddy go potty when he gets home?"

"Well. I don't know yet.  But the doctors and nurses will teach him how to go potty."

"How will he get his pajamas on?"

"Well, I will help him!"

"But are you strong enough?"

"Well, I don't know! But I hope so."

I ended up being grateful for the questions, because they helped me to systematically confront many of the disorganized  fears that were floating around in my brain. Our family has faced a lot of fears, starting the moment the accident occurred, and new ones have popped up each day ever since. 

Two days after the accident-the day before Darin's surgery-I was pretty shaky with fear.  I could best describe it as the feeling you have when you are about to throw up.  You aren't looking forward to it, but you know that you will probably feel better when it is all done so you wish you could hasten it. On that day, I was talking to my sister on the phone and she told me that her youngest daughter, my 11-year-old niece, Grace, had written and illustrated a story for my kids that was intended to help them through this difficult time.  She hadn't put all the finishing touches on her artwork, but my sister promised to send me pictures of the story in a series of texts.  When I received them, the story took my breath away.  It turned out to be the very thing I needed to get through that day:

"Once upon a time, there was a beautiful princess named Lucy.  There was also a very strong and courageous knight named Collin"

"One day, Collin was on his way home from outsmarting a giant and conquering a dragon and he heard the beautiful voice of a girl singing a beautiful song. He thought, 'Oh my, that must be Princess Lucy!  I must go and see her!' But there was one problem. He couldn't find where she was."

" 'Hmmm,' he thought, 'How will I be able to know where Princess Lucy is? Ooh! Maybe I should call her name and she will answer me!' He cupped his hands around his mouth and called, 'Oh Lucy!  Where are you?!' Then he heard a faint, 'Down here, strong and mighty Collin, the monster has put me in a dungeon!' "

" 'What monster? Is it a dragon? I'm good at fighting dragons!' Collin said. 'No,'  Lucy said, 'It's a very bad monster, his name is Fear. You have to conquer it!' Lucy was shaking, just thinking of his name. 'Don't worry, I will,' Collin said.  Then, Fear started coming out."

" 'He's (gulp) bigger than I thought,' Collin said.  Then Lucy whispered, 'Pray! Think something like God is with me, God is with me! It will help!'  Collin started to slowly walk toward Fear, thinking, 'God is with me, God is with me!' Fear felt really confused, because Collin wasn't scared."

"Fear started backing away while Collin was stepping forward.  Then Collin smiled.  He stopped, he looked fear right in the eye and yelled at the top of his lungs, 'I...AM...A...STEVENSON!!'  Fear looked terrified. Then, in a sudden burst, he disappeared."

" 'We conquered the fear! We conquered the fear!  Hooray!' Lucy and Collin shouted with delight. And ever since that day, when Collin conquered the fear, Lucy and Collin and the whole kingdom lived happily ever after.  The End."

 

I wonder if my sweet niece had any idea the gift she gave our entire family when she wrote and shared this story with her cousins.  For me, personally, I have been given a way to articulate my experiences ever since Darin fell off that ladder:  Sometimes, the "very bad monster named Fear"  has trapped me in a dungeon. Things seem complicated in those moments.  But the solution for me, in Christ Jesus is simple:   Pray. Say "God is with me!" Remember who I am in Him, and take the first few steps in facing my fears.

Does this story touch you too? If you know of anyone, big or little, who could use some encouraging words about facing fear, I hope you will share it with them. I would love for Grace to know how much impact her story has on others, so if you or someone you know is ever touched by it, please let me know so I can pass it along to her.

By the way: please don't copy, or redistribute Grace's story, or present it as your own.  If you share with others, I ask that do so by simply sharing this blog post as is!

xoxo,

Remaining in Him

Lucy and Collin's bedtime drew near this evening and if asked to describe the day with only one word, I would have said that today was "satisfying".  But things can change quickly.  And they did.  But I will get to that later.

The kids and I did some hard work today.  I'd like to spare some detail, so suffice it to say that I endeavored to tackle some poor habits that all of us have been practicing at home and attempted to introduce some new habits that I believe will serve our family well. 

I was really proud of both of my "big kids".  They received and followed my instructions and exercised diligence that defied their developmental stages.  By the end of the day we were all tired, and Darin had to work late.

Sweet 9-month-old Nora was pretty worn out too.  She had been along for the ride throughout our busyness and ended up being awake for much more of the day than I had anticipated.

So I made a plan to get her down for bed and be "Fun Mommy" for the rest of the evening by doing a movie and popcorn night with Lucy and Collin.  It was just going to be the three of us and it was going to be great.

And oh boy, was I ever "Fun Mommy".  I popped the corn, I sprinkled in the M&Ms, I made up chocolate milk and we were JUST about to snuggle in front of Curious George, when one of the kids acted upon an impulse that started a chain reaction that ultimately brought the movie, popcorn and snuggling plans to a halt. Nora woke up.  Chaos ensued. All three of the kids were crying.

I am sorry to say that when I scolded the child who made the impulsive move, I overreacted and laid blame.  I could have responded with grace, I could have overlooked the "offense", especially after a full day of this child doing so beautifully with the tasks of the day. But I blew it.

After Darin got home from work he was able to help me get the older two kids to bed while I was working with Nora to help her sleep again. I began to replay the events of the evening and go through all the ways I would have handled myself differently if I could. In those moments, if you had asked me to describe myself in one word, I might have said "scum".

But then, the Holy Spirit brought to mind something that I had written five and a half years ago.  Once I tracked it down and read it, it gave me goosebumps. I realized that God in His sovereignty just might have prompted me in January of 2009 to pray for the very things and write down the very words that I would need on this balmy July night in 2014.

Please allow me to share:

" When Darin and I face difficult parenting issues, I can trust God to supply us with the wisdom we need to be the parents that our children need. I can also trust Him to forgive us when we make parenting mistakes. We can ask God to heal our children when we hurt them.

As I pray for our children and for Darin and I as their parents, I want to ask God to protect all of us from pain that we might inflict upon each other. But now I'm sensing the Holy Spirit reshaping my prayers... and rather than asking God to keep us from hurting each other, I start to focus more on asking God to bring our children to faith in Him at an early age. That we may all have our Savior in common and that we will all be able to run to Jesus together when we inevitably hurt each other, or deal with disappointment within our family. That rather than shielding my children from pain, I would be able to guide them to the One who can heal them of their hurts.

I don't know the challenges that lie ahead for our family. But I know the One who is building our family and I have faith that He is building it for His glory. That gives me more peace and more confidence to parent our children than anything else."

Revisiting these words and prayers from years ago was a gift.  And now, if you were to ask me to use one word to describe what I am striving for, I would have to break the rules and give you three.  "Remaining in Him" (which is what Jesus invited his followers and friends to do in John 15:4).  Incidentally, the kids and I listened to this scripture (set to music) several times today. While we were hard at work, this album was in the playlist:

 I can't say enough how much I am enjoying the music from Seeds Family Worship which just so happens to be available for free audio streaming for Amazon Prime users.  Click on the above image for the link.

And thanks for allowing me to share what is on my heart tonight.

xoxo,

The Company of Friends

I remember talking with my mom and dad right after we lost my dear grandmother about 2 1/2 years ago.  Reminiscing about "Mama Ann"  soon turned into my parents reminiscing about their childhoods and one of the things they talked about was their mothers' daily coffee visits with the other mothers in their neighborhoods.  It sounds like it was the norm for the neighborhood homemakers in the 50's to have daily coffee with each other.  Both my parents remember how everyday after their mothers had their essential domestic tasks completed they would call up "Mrs. So-in-So" who lived  a couple of doors down to find out whose house was the coffee site for that morning.  It wasn't a question of "if" they would have coffee it was who was coming over to whose house for coffee.

I am happy with my and Darin's decision to live off of his income so that I can stay home with our children...AND I admire and respect mothers who earn income in or outside of their home in addition to their mothering responsibilities.  So this post is not meant to complain about the fact that it is not exactly the "norm"  for mothers be full-time homemakers anymore.  But I have to say that hearing my parents talk about their mothers' daily coffee visits made me stop in my tracks and ponder the fact that the neighborhood camaraderie that mothers seemed to share in that day is a thing of the past.  Today mothers who desire something similar must forge those realtionships with creativity and determination.

I have been singularly blessed with many dear friends who are authentic and encouraging, giving me many avenues to forge that type of connection.  April is one such friend.

April has three kids all close in age to mine and she and her husband have also chosen to homeschool. She and I became friends at church years before either of us had children.  When we were in the process of adopting Lucy, April and her husband Troy were some of our best "cheerleaders", and before that, she was one of my most considerate and thoughtful friends when I was experiencing infertility.  She threw me a shower when Lucy came home to us... she got goosebumps when I told her I was pregnant with Collin.  So last fall when she approached me with the idea of us getting our kids together regularly throughout the school year, I agreed without hesitation.

                         

Before the school year began, the two of us had coffee and discussed our  hopes and ideas for our times together. We decided that each of us would plan one "playdate" each month for the duration of the school year calendar.  And let me tell you...this is the best thing I have done with/for my children this entire year when it comes to our homeschooling endeavors.  

We have done a variety of playdates both in the community and in each other's homes.  Some of them have had educational components to them, others have been purely recreational.  Some have gone so smoothly they were almost dreamlike.... others were a little bumpy and involved tears and making up.  It is almost summer now and we are wrapping up for the school year... As I am reflecting on our time together, I'd like to share some observations that April and I have consistently made about our playdates and how they have benefited our families:

1. Less-Gumpy Mommies.  Let's just keep it real.  The smiling faces that you see on us and our children in the pictures we post on Facebook don't exactly tell the whole story.  One of the realities of stay-at-home motherhood is that mothers can sometimes become...well...grumpy. And the age-old adage that says, "if mamma ain't  happy, ain't nobody happy"... Yeah it's the truth.  April and I can both attest to the fact that often we have come into playdates frazzled and grumpy.  But something happens when we meet up.  We get into a new environment, our kids are thrilled to see each other and all of a sudden the isolation we may have been feeling melts away and we aren't taking ourselves quite so seriously.  It is beautiful. For us and for our children.

2. Bonding Occurs. It has been so beautiful to watch our children bond with each other this year.  Preschool and early elementary years are such a tender and important time for our children's development.  Among all the things we seek to teach our kids, one of the most challenging "subjects" for them to grasp is the give and take of developing friendships.  Having a small group of friends to be with on a regular basis has afforded us the delightful opportunity to guide our kids through the process of caring for, learning with, apologizing to, forgiving and celebrating with their peers. Most parents care about the friendships their children develop, and our window of influence in this aspect of their lives is short. We are so thankful to have found a pleasant way to make the most of this time that we have to guide them on how to find and be good friends.

3. Masks Come Off. I am currently reading the book No More Perfect Moms by Jill Savage, and in chapter one she urges moms to remove their "masks" that would otherwise communicate to the world that we don't have problems.  Although I tend to think that I am not prone to portray myself or my life as more rosey than it is, when I am honest I will agree that I am still tempted to put on a "mask" of perfection as much as any woman.  But when I am consistently spending face time with April and our kids, there is simply not an option to wear that mask.  We know each other well enough now to see through them. It's healthy as mothers to be in that positon regularly.

I could go on and on (arguably, I have gone on and on), and not just about my friendship with April. I could tell you about Kimberly, Shannon, Jonna, Amy, Andrea, Jamie, Stacy-all friends (who are also moms) near and far whose presence in my life won't allow me to think I am doing this alone. My point is this: it is currently so easy to live in isolation as mothers and developing the friendships we need to combat that isolation takes intentional effort, creativity and energy.  I hope that in sharing some details about experiences that April and I have had (and I have done so with her permission) I have conveyed that it is SO worth the effort, creativity and energy. If our kids could articulate it, I believe they would say so too.

xoxo,

Finding Help

It has been on my heart lately to share a little about how the process of identifying Lucy's special needs has opened my and Darin's hearts more and more to seeking help (in the professional sense) for her (and us).

It has been humbling for me to realize that there are aspects of parenting our daughter that Darin and I are not able to handle without professional help.  The amount and type of help we have sought and received has come in many stages and varieties, and I am guessing that other types of help also will enter our world in the future. I shared in this post about our experiences with identifying Lucy's expressive-receptive language disorder and sensory processing disorder and how we found help for her through speech-language therapy and occupational therapy. After about a year of occupational therapy and approximately two-years of speech-language therapy, we were feeling really encouraged.  Lucy was making amazing language progress and many of the difficult sensory-seeking behaviors were minimized.

We were, however experiencing increased meltdowns that were triggered when Darin or I had to correct, redirect or discipline Lucy. If it were not for the presence of Lucy's other known issues, we might have chalked up these behavioral challenges to being a "phase" or consider her to be a "strong-willed child".  But understanding everything we already did caused us to dig a little deeper into Lucy's behaviors. "Conventional" wisdom in how to discipline children fell flat with her (i.e. timeouts, removing privileges, etc.).  She either seemed completely unaffected by these measures or would melt-down to the point that any teachable opportunity was lost.  Sometimes her emotional response to our discipline measures seemed unusual and puzzling, for example when I took a serious or stern tone with her, she would erupt in uncontrollable laughter.  When I would calmly attempt to remove her from an escalated situation, she would become panicky, yelling at me in protest and sometimes become physically aggressive towards me. Sometimes these meltdowns would last 45-minutes to an hour. Sometimes they would occur multiple times a day.  I found myself feeling hopeless and sometimes angry.  I was also at a loss as to how to give Collin the attention he deserved from me when so much of my energy was spent helping Lucy through these episodes that were beyond her (and my) control.  Too often when Lucy's meltdowns occurred, I just set Collin down in front of a DVD, feeling horribly guilty for resorting to that.  I told Darin that I believed that it was time to enlist the help of a child and family therapist.  This was the help that was the most difficult to seek out... I won't dive into it here, but this was the realization that hurt my "pride" the most.

I had to tackle this feeling of wounded pride head-on, because I knew it was a hindrance to getting what our family needed to keep moving forward.  All of a sudden I had a "flash-forward" in my mind to Lucy's early adulthood.  I wondered what the trajectory of our family's life would look like if we  started to get that help right now as opposed to what it would look like if we kept trudging along in isolation and frustration.  I feared that the visible anxieties, stress and sadness that Darin and I felt over these struggles would start to make it harder for Lucy to feel secure in her relationship with her mommy and daddy.  I feared that the progress we'd made since her infancy in developing a trusting parent-child bond would be disrupted. I also feared that I would become too negative towards her and she would pick up on it. I knew that getting professional help for these challenges wouldn't guarantee a smooth future, but I imagined us continuing on the path we'd been on WITHOUT help for the long haul.  I imagined Lucy as a young adult, perhaps feeling disconnected and distrustful of us.  I imagined myself having to tell her that when she was a little girl, we saw hints of these challenges brewing and considered getting help but refused to do so because of our pride.  Pardon me for saying this, but that's crap. For me, envisioning the possibility of having to admit that to my adult daughter sealed the deal.  I hope with all my heart that as a young adult, Lucy will feel close to us... that she will feel safe with me as her mother and might even be able to view me as a friend.  But, if that is not what unfolds in the future, I'd hate to look back upon her early childhood and have memories of myself clinging to my pride rather than humbling myself when the Holy Spirit had prompted me to let it go and get help.  And I am convinced that the "flash forward" moment I had was a gift from God.

Soon after that key moment, Darin and I got a referral from the agency where Lucy receives her speech and occupational therapies and began to meet regularly with a child and family therapist.  We ended up meeting with this gal for about 3 or 4 months and she helped us learn some simple ideas/strategies that we would have never thought of on our own.  Many of these strategies have made a difference in our ability to guide Lucy in her behavior.  Even though it wasn't practical or feasible to continue meeting regularly with her for the long term, I will look back on the time we spent with her as a turning point and springboard from which we began to make strides in learning to understand and approach Lucy's behavioral challenges.

More recently, we have decided to begin a modified "Applied Behavioral Analysis" (ABA) program in our home with a delightful gal whom we recently connected with.  Ruth is the wife of a pastor at a large local church who has parented a child (now age 18) with issues similar to Lucy's.  I began reading Ruth's blog which she launched several months ago, called Connecting One Piece at a Time and while perusing her site I read about the in-home ABA services she offers to families like ours.  This is the statement from Ruth that captured my attention the most:

"I have developed a passion for encouraging, helping and training children who have learning differences, along with their families. I love helping families normalize family life while living with disabilities."

Between that statement and the encouragement I received from her regular blog posts, I knew that it was worth our while to pursue her help.  So we met her and acquainted her with Lucy's specific needs and began the process of hiring her to come and work with Lucy (and our family) on a weekly basis.  We just had our first session with Ruth this past week and all I can say is that I am feeling grateful and hopeful about this addition to the array of help we have sought and received.

Lucy is a curious, helpful, compassionate, sharing, enthusiastic little girl all wrapped up in an adorable 35 lb package.  It breaks my heart that at times I have been so preoccupied with how to understand her needs and challenges and how to parent her that I have been hindered in enjoying her as the beautiful gift that she is.  But now, with the combination of help that we currently have in place for her I feel like I am being given back the gift of simply enjoying her as my daughter.  I praise God and acknowledge that it's His hand that has guided us through every step in this process.  It is so worth it to seek help. And I hope that somehow our story can encourage others who may need help but feel reluctant to seek it in their own parenting journey.

xoxo,

Buddy System

In a recent post I shared a bit about my and Darin's experience of discovering Lucy's special needs, and our process of finding the help she/we needed through occupational therapy, speech-language therapy and family counseling/therapy.  I shared in a fairly matter-of-fact manner about those experiences, and this is something of a follow-up post addressing a matter of the heart pertaining to her specific need for help in social settings...

Any mother desires to see her children (with or without special needs) find acceptance and make connections with friends. Most kids from time to time experience the pain of being left out or rejected by peers, so I have a feeling that most people can relate to my heart when it comes to helping Lucy form relationships with other kids.

The best way I can share is with a quick story. A few months back, I brought the kids to a park for some playtime.  Lucy quickly noticed two little girls close to her age who already knew each other and appeared to have been brought by their mothers for a play date. The two girls were happily playing and chatting together and I could tell by the way Lucy was observing them that she wanted to be a part of their friendship.  While Lucy can ask and respond to many questions and can engage in simple conversational language, she is not able to converse on a level that is typical for her peers. This doesn't mean she doesn't desire to make conversation, so her approach in this situation with the two girls was to physically place herself in between them and verbalize a string of unintelligible gibberish in a conversational manner. 

One of the girls paused, gave Lucy a puzzled look and said, "Are you talkin' Japanese?"

I gave the girl a smile and said in a cheerful voice, "No, sometimes she just likes to speak in her own made up language." 

The girl then said, "Okay," and then went back to playing with her original friend.

Of course the other girl's response to Lucy was completely innocent and actually pretty funny (I did get a chuckle out of it), but this story does illustrate what I have come to accept: sometimes it is not realistic to expect that Lucy's peers will be able to understand how to interact with Lucy in a one on one situation without guidance from me.  

My dilemma is that I don't always want to be a "helicopter" parent hovering about Lucy and jumping into her and Collin's playtime with other kids.  Thankfully, Darin and I HAVE found a strategy that plays a key role in making social situations successful for Lucy and it is nothing more than the good old-fashioned "Buddy System".  

The trick here is to do what we can to find other kids who are a bit OLDER than Lucy (for her that means kids ranging from ages 7 to the "tweens") who might take interest in being her "buddy".  For example, we have a family who is dear to us who has a daughter who is now 11.  For more than two years now, this sweet girl has come over to our house once a week after school to give me a hand with the kids.  Both kids love her and I often bring her with us when we venture to a park or the zoo.  Her presence is really helpful when Lucy is in social settings that would otherwise be difficult for her.  She is still a kid but she also has the ability to see when Lucy needs extra help or guidance and she does a beautiful job providing just that.

Another way that the "buddy" system helped Lucy tremendously is when she attended Vacation Bible School at my parents-in-law's church two summers ago.  While I wasn't ready to put her into the VBS at our own church, my mother-in-law invited us to have Lucy attend their church's program because they had volunteer buddies available specifically for kids with special needs.  Lucy's buddy (a teenage girl)  just hung out with Lucy during the week and helped her participate in most of the activities.  She could tell when Lucy just wasn't "jiving" with the program and in those instances, she would take Lucy for a little walk until she seemed ready to enter back into the group setting. 

And most recently the "buddy system" has come into play for Lucy in an amazing local program offered by Ballet Des Moines called Dance Without Limits (DWOL). This is a ten-week dance class for children with special needs who may not be able to successfully participate in a typical dance class.  The heart of how DWOL works lies in the WONDERFUL helpers who are tween and teenage dancers who volunteer their time. Lucy absolutely loves her sweet helpers and I think she would do just about anything they asked of her.

For those who read this and have children who also seem to need some extra help in social settings, I hope that what I have shared gives you some encouragement and some ideas.  For those of you who have older children who would enjoy being a "buddy", know that there are children with "hidden disabilities" all around you, and I would encourage you to simply pay attention.  If or when you become cognizant of such a child in your circle consider trying to make such a connection with your son or daughter.  Perhaps you are member of a church and are aware that there are children in your fellowship who could benefit greatly from having a "buddy" with them during Sunday School or other children's programs. If this idea were to get the wheels turning in your head, perhaps you could help to put a volunteer system in place like the one at my parents-in-law's church.  I guarantee it would make a difference in the lives of these children and their families.

Thanks for reading and allowing me to share my heart and suggestions with you on this matter. : ) I can't adequately express how "magical" this approach has been for Lucy and what it could be for other's like her.

xoxo,

Loving Lucy

In my first post I made brief mention of the fact we have discovered that our Lucy has some special needs.  I've been going round and round in my head over whether I should share more about that here, primarily because I want to honor my daughter's dignity as much as possible, and there's just something about throwing information into cyberspace that makes me want to proceed with caution.  But part of my stated purpose for this blog is to share what I have been learning as a mother and to entirely avoid sharing how I am growing in my understanding of Lucy and her unique needs would leave out a significant portion of my learning process.

To give an overview of what we have discovered and how we have gone about getting help, I will tell you the the three areas of difficulty we have identified.

It was close to Lucy's 2nd birthday that with the help of our family physician we recognized that she wasn't meeting her milestones in language development.  After ruling out hearing loss, we were able to utilize services though our public school system to have testing done and receive weekly speech and language therapy in home. She was diagnosed with Mixed Expressive Receptive Language Disorder (MERLD) and we began to see great progress with the help of therapy. So I  would say that for the entire year that she was two, Darin and I were primarily focused on learning and addressing her language learning needs.

While we worked to get handle on Lucy's language needs, we came to notice some other areas of concern as she was approaching her 3rd birthday.  She seemed to have a constant need to be in motion... more than an average toddler, for example if we were in a public place with an escalator, she would want to ride it up and down for more than 45 minutes at a time and when we attempted to transition her away she became devastated.  She also trying to eat substances with intense flavors and smells such as coffee grounds, soap, black pepper, and strong mints. Rather than being repelled by these tastes she seemed to crave them and go to great lengths to try to get a hold of them.  We also noticed that she became overwhelmed and withdrawn when we were in settings with large crowds and lots of noise.  

A dear friend who had lots of exposure to kids with special needs, suggested that she could possibly have something called Sensory Processing Disorder (SPD), which is a neurological issue that causes people to receive sensory input with greater difficulty than most.  About four months after her 3rd birthday, we were able to have her evaluated at the University of Iowa Center for Disabilities and Development, where she was officially diagnosed with SPD.  The professionals that evaluated her recommended that she receive occupational therapy (OT) to help her learn how to cope.  A couple months later, Lucy began receiving OT and as well as continued speech-language therapy from  a wonderful local organization called Childserve.  I would say that for the entire year that Lucy was three, Darin and I focused most of our parenting energy on trying to understand Lucy's sensory needs and receiving education from her occupational therapist.

With about 9 months of weekly occupational therapy behind her, Lucy has made great strides, and her cravings for sensory input are no longer constant.  Darin and I have learned how to recognize when she is struggling with her SPD and now know strategies to help her cope when the sensory cravings are escalated.  

When Lucy approached the age of four, one more concern began to form for Darin and I.  We began to notice some subtle but real struggles that Lucy seemed to have when it came to social interactions with her peers.  It's kind of hard to articulate it, but it seems that she has a definite desire to form friendships when she is with kids her age, but often times those connections don't always seem to be within her reach.  A lot of times when she is playing with other children, she can't answer their questions or converse with them at their level.  Often the tone in her voice is off-putting and she has hard time keeping her hands to herself which can cause peers to inch away from her on the playground. We also became stumped at home when it came to giving her instructions, managing her behavior and helping her to regulate her emotions.

 Because of these struggles we felt that we needed some suggestions that the average parenting books couldn't provide, so a few months ago we found a children's therapist to advise us. We are very much  "in the throws" of dealing with these challenges at present, but one of the key concepts we're starting to grasp is that Darin and I need to directly coach Lucy and model for her how to interact with others.  Sometimes it involves stepping in when we hear her speaking to others in an off-putting tone and asking her to listen to us say the same thing in a more appropriate voice. It means a lot of repetitive, direct teaching when we're in the midst of social settings. It requires a lot of patience and a lot of perseverance.  

When it comes to the expectations we have for her behavior in our household, we are learning what expectations are realistic to have in the first place and we must frequently remind ourselves that the  goal when it comes to parenting is not to "show her who's the boss" or lord our authority over her but to lovingly provide the structure that she needs to thrive as a functioning member of our family. It can be an interesting balance with having Collin who is so close in age to Lucy, because some expectations that are reasonable for him may not be so reasonable for her. But with God's grace we are learning and making strides.  

This has been a long post, and if you have hung in there this long, let me say thank you!  I hope that sharing our story of learning how to understand and care for Lucy according to her needs might help you to have understanding and compassion for other families who have kids with special needs.  

For anyone who has a child with special needs or knows others who do, I'd like to wrap up by pointing you to a couple of encouraging resources I have found.  First, let me share a website called Chosen Families.  Here you will find links to online resources for several "hidden disabilities", as well as insightful articles and a blog with many contributors representing families with lots of different disabilities. You may notice their badge on the left column of this blog with their link. 

 Also, I wanted to share this Bible Study that has been written specifically for mothers of children with special needs:

I had the pleasure of meeting the author, Bev Roozeboom at a local homeschooling conference this past spring, and after chatting for a couple minutes, I purchased a copy of Unlocking the Treasure on the spot.  I have been working my way through this study by myself, but I can only imagine how encouraging it could be to do this with other moms with special needs kids.  

Well, this post has outlasted Collin's afternoon nap and both of my busy kids are needing some attention so I'd better be on my way! 

Thanks. : )

xoxo,

Creating Structure

Being the right-brained creative gal that I am, I have always tended to bristle at the idea of a schedule-driven life and home. I did eventually accept the fact that some degree of order is simply necessary to function well in life, but had to deal with the fact that creating order and structure wasn't a skill I came by naturally.

One of my goals for coming out of the "survival mode" our family has lived in for three years, was that I would be able to find a way to create routine in our home that would complement my personality rather than fight it. Taking inspiration from books, and talking with friends/family who are more skilled in this area than I am, I have incorporated some strategies that are making a difference for good in our family, and I thought I'd share one of those strategies today.

A visual scheduling system is tool often used for kids with special communication needs due to language disorders and delays. After receiving encouragement from Lucy's occupational therapist and speech-language pathologist, as well as from my sister who is a speech therapist in an elementary school, I decided to create a visual scheduling system for our family as a means to involve the kids in planning out our time and helping them know what to expect during the day.

I began by making a list of EVERYTHING I could think of that our family does, including at-home routines, errands, recreational activities, and social opportunities.  This was a lengthy process, but I came up with about forty things and I found a photographic image to represent each item.  I then opened up Microsoft Publisher and using the business card template, created a card for each of the items on my list that included text and the images. Then I used my Xyron Creative Station with the magnet-laminate cartridge to turn the cards into magnets.  They ended up looking like this:

I also made text-only magnets that represented "morning", "afternoon", and "evening" and the seven days of the week.

Then I went to a craft shop and purchased a small metal board that is often used by cross-stitchers to keep track of their patterns. I love this board because the size and weight makes it portable. The only drawback was that the edges were fairly sharp... a problem that was easily remedied with my stash of cute Japanese washi tape:

I was then ready to introduce the concept to the kids.  I decided that we would use the board three times a day.  In the morning at breakfast I would sit with the kids, and introduce the plan for the morning by lining up the magnets in the desired order.  It was important to me that we only did a section of the day at the time, so as not to overwhelm them with more information than they could handle. This is what a common morning looks like for us:

Then at lunchtime, we come together again with the board and plan out the afternoon.  The nice thing here is that in the afternoons, there is normally some flexibility for them to have some decision-making power.  In those cases, I decide on a group of activities that I approve of, present those options to the kids with the magnets and let them create their own afternoon schedule.  (This is also really helpful when we leave the kids with a sitter, because it gives them ideas of what we have available to do in our home and helps them to get their time together off to a good start.)

When Darin comes home from work and we are all sitting together at dinner, we can then plan the rest of our evening as a family and invite him into the flow we've had going that day. This really helps us all to finish our day well.

One of the things that I find helpful is that when one or both of the kids desire to stray from the routine, we can grab the board together and discuss it.  Sometimes we can't be flexible and we have to stick to the plan. In that event, the board is a visual aid to help them understand that.  Other times, we can be flexible and change things around, but first we physically add, remove or rearrange the magnets on the board to agree upon the changes.

Now that we have been using the board for a couple months, I find that we have some decent habits formed and we don't always have to use it for EVERY portion of EVERY day, but when things are starting to get a little chaotic, and we need to restore a sense of order, we pull out the board and magnets. Since they are familiar with the system, they have an easier time accepting and cooperating with my or Darin's intervention.

This is a tool that complements my personality because I was able to use my creativity in putting together the magnets and board, and it allows for the flexibility that I crave.  It also has helped foster a sense of peace within our household because it acknowledges the kids' desires for involvement in decision-making while still maintaining my and Darin's roles as parents.

What do you think? Have you discovered tools or strategies that help bring routine and order to your family's life while still acknowledging your unique personality?  I'd love to hear what has worked for you!

xoxo,