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Redefining Unconditional: How Our Son Completely Changed Our Lives

I was so honored to have the opportunity to write a very personal piece at Rosevine Cottage Girls a few weeks ago. Cheyenne asked me to join their series on the “unconditional love of a special needs parent.” Oh, yes, please! You see, I believe this article is for any parent. Our children transform us and chip away at selfishness and pride, if we’re willing to let our parenting experiences shape us into better people. Parenting of any kind is saying “yes” to the changes that happen within us when we welcome the possibility of unconditional love into our lives.

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For two years, I would sit at his basketball games and silently sob.

Not because Little Man (our youngest son) wasn’t as good as the other kids were. (He wasn’t at the time.)

Not because I was embarrassed to be the only parent with a kid on that team not keeping up.

Redefining Unconditional_ How Our Son Completely Changed Our LivesI would weep because he was cognitively stuck. Like a computer sluggishly trying to process a hard drive full of information, he would stare. The game went on around him, and he lagged 30 seconds behind. He would run down the court just as the team was turning around to head the other way down the court. Then he would remember, briefly, to “guard his man” before getting lost in the loudness of the gymnasium, the overstimulation of the ball bouncing around him, the fast pace of the kids racing past, and the pure anxiety of being in slow-motion when everyone around you is on pace. He would peel his hangnails and wear a perpetually worried look on his face.

My heart would ache and shatter not because he was different but because it was an indication that once again, he was suspended in that time and place called dysregulation, for whatever the reason, and we would need months to partly climb back out again.

Join me over at Rosevine Cottage Girls to read how Little Man changed our lives for the better.

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Read the rest of this entry »

 

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Top 10 Ways to Keep Kids Regulated and Engaged During the Holidays

Top 10 Ways to Keep Kids Regulated and Engaged During the HolidaysWhether or not you have a child with special needs during the holidays, everyone in the house—adults and teens included—can get ramped up and a little “off” during the lack of routine, irregular eating and sleeping patterns, and increased social interactions of the holidays.

As facilitator of a FOCUS Group for Special Needs Parents at my church, I brought in a 20-year public school occupational therapist within our congregation to do a parent workshop on “De-Stressing the Holidays.” With Linda’s permission, I share some helpful tips for all families at a particularly stressful-yet-fun time of year. Perhaps there are some last-minute stocking stuffer ideas you can find here as well.

10. Social Stories (to help with emotions, disappointments, fear, anxiety, etc.)

The holidays often come to us as a mixed bag of expectations and emotions. Children are excited, perhaps nervous about a family get-together, have pent-up energy and frustrations, and have trouble staying regulated among the extra sugar intake, late nights, and unpredictable schedule. “Social stories” can have pictures and words; they walk through holiday-time scenarios so kids know what to expect and that feelings can be unpredictable and very normal. Here is a great web site I found for social stories on everything from anticipating blood draws to the dentist.

9. Calendaring

Children need a sense of what to expect when the normal routine is disrupted by holiday events and time off school. A simple printed-out calendar with pictures or words (depending on the child’s developmental age) can be a great way to take away the “What are we doing today?” question that visits us twenty times a day and give kids a sense of knowledge and control; they could even express “wants” on it (like “see a movie” or “play a game”). They feel a part of the family calendar when they can see it. Read the rest of this entry »

 

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Dear Parent of a Child With Special Needs

Dear Parent of a Child with Special Needs:Dear Parent of a Child With Special Needs

I have something to say to you.

I want you to take a deep breath.

I want you to stop blaming yourself (if you do).

I want you to know that on a day that demands much emotional, physical, mental, or spiritual energy to advocate or meet the needs of your child, if that’s all you do, you’re a rock star!

I used to tell myself my child’s disabilities were because I was depressed for a short period of time when he was young.

That I didn’t stimulate his brain enough.

That we didn’t color and do puzzles as much as I did with my other kids.

That I was to blame. I had a lack. I brought this on.

That I should have fed everyone more organic food and cleaned with natural cleaners—and lived on a farm.

That my few piles of disorganized mess were to blame for all executive functioning problems in all family members through several generations.

My if onlys?

If only I read up on all this during the early intervention years. Read the rest of this entry »

 

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Why My Child Is Sad—And Why He Isn’t

Why My Child Is SadYou may relate to the food allergy piece of this—or the part about a child with special needs. Maybe you understand the mental health bit. Perhaps you struggle yourself. This is just one tiny scenario in our family’s journey. It may seem trivial, and when looked through the lens of one small moment, perhaps it is, but the message drawn from it is hugely significant and important. We all struggle with assumptions and forcing our good intentions, as well being misunderstood. It’s universal.

Today, one tired, squeaky, sometimes defeated little voice comes through in my experience. I believe his voice rings out, joining many others along similar paths. Little Man and I want you to know:

You are not alone.

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As she bent over to adjust the blood pressure sleeve, she asked him three times:

“Are you looking forward to school starting?”

She had to ask him three times because the first two times he looked down and wouldn’t answer. She had the best of intentions. She wanted to make my son comfortable.

I know the “goal” here is to have a 9 year old make eye contact, smile, act engaged in and enthralled by conversation with an adult, and respond appropriately with all polite words tacked on.

On his best days, he’s charismatic and very articulate.

I’m well out of range of the goal line right now, however. I really am.

Read the rest of this entry »

 

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What I Learned at the IEP Roundtable

IEPRoundtableI’ll admit it. Part of me was terrified.

Sitting around the table with everyone who had assessed my child over the past few months, or in some cases—years—was intimidating.

What were they going to say? Were they going to kick him off the boat—not because they don’t want to help him—but because he ranked in need behind other kids when it came time to dividing up the special education pieces of the School Budget Pie?

I had come to find each of these specialists and staff members endearing in different ways. For better or worse, we had been contractually married for several years in the common cause of my son. We were linked, convenanted by legal documents and a mutual desire to help him.

But what if, once we got around that table, the budget dropped between the two sides of the table, dividing us abruptly in half like Moses parting the waters of the Red Sea? What if a former Ally in the Care of My Son now became a Defender of Policy, Keeper of the Budget?

Read the rest of this entry »

 

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Boxing Kangaroos and Other Signs of Hypervigilance

Boxing Kangaroos and Other Signs of Hypervigilance

Lately, I have had my hands and schedule way too full. Our daily schedule involves speaking with at least two doctors/specialists a day, multiple evaluations, massive amounts of paperwork, class observations (volunteering is a great way to keep an eye on your own kid), interacting with teaching staff, and constantly considering how to adjust sleep, vitamin intake, dietary choices, and schedule to maximize the best functioning for just one of my three children. Attention Deficit Hyperactivity Disorder (ADHD) is a tricky thing in the middle of growth spurts, metabolic changes, classroom setting, sleep patterns, and any stress in the house. I can’t say I have anything figured out yet, but I am learning to be proactive, attentive, and flexible.

In the middle of the crazy merry-go-round we are riding, my son was doing a school research project. For his poster, he had to choose a continent and an animal that lives there to blend the concepts of habitat and geography, with some zoology thrown in for good measure. Since we had visited Australia a few years ago when we lived in the Marshall Islands, he chose a kangaroo so he could happily declare how he had pet one!

Well, actually, he went to feed it and accidentally stepped on its toes (yes, they have toes!).

Know the feeling? When you go to help someone, but you unintentionally end up making it worse or, at the very least, have your intentions misunderstood?

Well, I happened to be in the school library during one of the days the students were working on their continent/animal posters, and I caught Little Man, 9 years old, fascinated with several pictures in the book. He was so captivated, in fact, that I had to keep redirecting him to stay on task. But if I hadn’t stopped telling him to “stay focused,” “answer the right question,” and “finish up,” I would have missed what had him so enthralled: two kangaroos boxing each other. That’s right— boxing. They actually support their entire bodies on their tails while they aim two feet at their opponents at one time. (It’s true. I saw footage here.) That was Little Man’s fun fact of the day.

But it stuck with me beyond that. I couldn’t shake the image of those intense marsupials getting a swing in here and a swift, two-legged kick in there. (Apparently, their legs go together and can’t kick independently. Who knew?)

And it’s what I felt our family had been doing for so long.

We were boxing kangaroos!

Sometimes, we would sit on our tails trying to hold everything else up while we kick-boxed and punched at everything around us.

Often, we would stop in the middle of something else we were doing and drop everything to go a couple rounds with the current battle or struggle that threatened to rob us of peace.

Know what I meanEver been there?

But, as it turns out, I don’t have to take a swing at all strife everywhere all of the time. I don’t have to do amazing balancing acts on my tail and whack at everything offering me the slightest look of menace or provocation, no matter what the challenge is before me.

Why?

Because the Lord my God goes with me. He fights for me. I can rest in that. I can ask Him to take it and then show my trust by being still and waiting for Him to act on my behalf, as He promises to those who believe in Him. I might not be fighting Moses’s Egyptians, but the mountains ahead of me need moving. I cannot do it only in my own strength.

And really, once we grasp that concept, it’s such a huge relief, isn’t it?

Deuteronomy 31:6, English Standard Version (ESV), Moses narrating
“Be strong and courageous. Do not fear or be in dread of them, for it is the LORD your God who goes with you. He will not leave you or forsake you.”

Exodus 14:13-14, ESV, Moses narrating
And Moses said to the people, “Fear not, stand firm, and see the salvation of the LORD, which he will work for you today. For the Egyptians whom you see today, you shall never see again. The LORD will fight for you, and you have only to be silent.”

Isaiah 45:2, ESV, God speaking through Isaiah the Prophet
“I will go before you and level the exalted places, I will break in pieces the doors of bronze and cut through the bars of iron…”

He goes before me and levels the exalted places.

What now? He’s going to “break in pieces the doors of bronze and cut through the bars of iron.”

Well, it sounds a lot to me like I don’t have to put up my dukes after all and break out in a sweat over everything that comes across my path. I can be diligent, and I certainly don’t want to be complacent, but it sounds like I can put my trust in God, a mighty and very capable warrior. When I believe and trust Him, He promises to remain close, go before me and with me, and remove obstacles from my path.

He says: “Fear not.”

If I really place my trust in Him, it also sounds like I can stop boxing kangaroos.

How about you?

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Intrigued by Australia? Here is a wonderful guide on 100 Best Things to Do in Australia and also Our Aussie Adventure, a personal travel experience, written on my original blog site about life in the Republic of the Marshall Islands (and our travels in that part of the world).

More on hypervigilance can be found here.

 

*This blog is also featured at Your Tewksbury Today.

**It can also be found at Grace & Truth Link-Up, Mom 2 Mom Link-Up #23, Pick Your Pin Tuesdays, and Simplified Life.

 

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Top 10 Reasons I Love Living with Tigger

Top 10 Reasons I Love Living With Tigger

I have to pause sometimes at School Return Time when I’m low on sleep and trying to track with the beautiful ADHD brain that comes home and pitches 1,000 ideas to me at once.

It’s a fascinating mind that can do this. He has my utmost respect and admiration,

but

I have to remind myself to be fully present.

  • To not just “uh-huh” him, to engage with follow-up questions
  • To acknowledge a few of those ideas
  • To affirm that his heart to publish a series of 11 dog adventure stories (with a bubble on the jacket to market my book, LOL–his idea–he even asked me first!) is seen for the kind intentions that go with it

Too many “stop it, slow down, pay attention, settle down, be still”s in his day already. Someone needs to plug in and hear what he is really saying. For anyone who loves a ‪‎special mind‬ out there, here’s something we must be careful of: Monitoring our own frustration levels and responding to a few of those brain races can make a significant difference in those children feeling heard.

The busy, quick-motion ADD/ADHD mind can feel unheard much of the time. Some of it is how they are wired: We might respond, but the ADHD child is already moving on to the next 12 things before he/she gets an answer.

My goal isn’t to be a perfect listener. I couldn’t fully track with the Tigger mind in my house despite my best efforts. But I can do a very simple thing: I can listen for the theme of the moment, and I can respond.

And I can dwell on why living with Tigger is a precious gift that teaches me more about myself and about life than I would otherwise know.

So, here are my Top 10 all-time favorite reasons why I love living with my bouncy-minded, springy-bodied child…

10. ADHD Super Powers. Jump-dancing to a real beat in his head while doing a fluoride rinse while brainstorming ideas for his next dog book while smiling at us while shaking off hair from the haircut I just gave him while humming = ADHD Super Powers, and ADHD Super Powers are to be envied and admired.

9. Multitasking Visionary. He brainstorms like a beast, furiously scribbling down ideas in artwork and words. He’s a visionary who plans to save birds from other animals getting them, run a toy factory, and patent his ideas on how to make and market ant killer before someone else figures out his formula—all at the same time.

8. Fast-Talker. Talking swiftly is an art form to him. He has perfected the art of race conversation. I can’t in any way keep up with it, not even with New York’s finest taxi cab drivers jumping on the highway that is his mind, but I am forever in awe of it. Incessant chatting is also our first clue that attending (focus) is going AWOL. It’s a red flag we’ve grown to appreciate before the spiral into anxiety.

7. The Absent-Minded Professor. Picking up clothes and reminder lists? Who needs to do that when you’re already thinking about ten adventures you’d like to have in the next five minutes? While the rest of us appreciate when he stops leaving evidence of himself draped across all surfaces, there is something to be said for rockin’ it carefree and using the mind for other pursuits.

6. Spontaneity. He’s fun to be around because you never quite know what will come out of his mouth, and it’s often very funny. And yes, sometimes, it’s so impulsive, it’s embarrassing, but I’m learning to be that way too—less uptight and more spontaneous—and I don’t have ADHD. Maybe we’re all more fun now because of Tigger—yeah, I’m pretty sure we are.

5. “The Wonderful Thing About Tiggers Is Tiggers Are Wonderful Things!”*  Stairs, couches, and items jumping off of stairs and couches are meant to be enjoyed with enthusiasm and Tarzan-like agility. Why be boring and walk, stride, or amble, when you can bounce indiscriminately all over the house, furniture, wooden and concrete structures, etc.?

4. Practicing Still. No efforts are small. Even the frustrating moments before a timed math test are huge, but in the attempt to decrease distraction, we learn to be more still as a family during times of concentration—not all of the time, but enough to remind ourselves that quiet can be good. We don’t need noise all of the time. Tigger has plenty of that inside his brain. And we all have more than we need of that in our daily lives. “Still” doesn’t happen often, but when it does, we treasure it, and we learn to practice it. And when “still” doesn’t go as planned, we bounce as we process a thought because “the wonderful thing about Tiggers is…” (refer back to No. 5).

3. Celebrating Small Moments. There is victory in not reading the same sentence over and over again and being able to move on to the next one. Focus and concentration are not taken for granted when they don’t come easily, and Tigger is open to celebrating small moments in big ways. We define success differently because of him. It has softened our edges and has made us more understanding of the different forms that accomplishment and achievement can take.

2. New Vocabulary/Keeping Positive. We are learning to take “Be still!” “Sit still!” “Focus!” “Pay attention!” and replace them with words that have more meaning for someone who can’t do those things. We’re learning: “You can do this.” “Take a deep breath.” “One piece at a time.” “I love your mind.” “Wow, great job sticking with the worksheet until you finished it.” Can’t we all use a retake on some of the things we say regularly? Tigger makes us more mindful of what comes out of our mouths.

1. Loud, Risk-Taking Love. Everything about Tigger feels like a loud explosion sometimes: the emotions, the frustrations, the perseveration, the energy level, and the noise. But he also oozes grace and compassion because he knows what it’s like to sit with a weighted lap pad or on a yoga ball at school, to be called out of class for services, to need extra time to process a test, to be told endlessly to start his work. He knows that unwanted spotlight, the pain of disappointing adults over and over again for not meeting expectations, and the longing to not be different. So when another kid is struggling, he has compassion radar the likes of which would shame the best of clergy. He gets it. And he loves deeply, risking big emotionally just as he does in almost every other area of his life to get that intense feedback. He feels in big ways.

Tigger loves out loud, and I can’t imagine not getting to have a front-row seat to that. It’s an incredible honor and a privilege.

These are my particular top 10. What are some of yours about your own Tigger, or, if you have a child/loved one with different struggles, how have you caught glimpses of the blessings inside the challenges? What has he/she taught you that has changed the way you view and approach the everyday?

I’d love to hear from you!

*”The Wonderful Thing About Tiggers” was written by Richard Sherman.

More blogs about our journey to loving ADHD can be found here (click and scroll down). The beginning of our ADHD journey (and how our faith in Christ brings us much peace and strength through each challenge) can be found in Not Just on Sundays: Seeking God’s Purpose in Each New Day.

**This blog is also featured at Grace & Truth Link-Up, Saturday Soiree, Coffee & Conversation, and Mom 2 Mom Link-Up #23.

 
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Posted by on January 31, 2015 in ADHD, Tweens/Children

 

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A Letter to Parent Volunteers in Elementary School Classrooms

classroom

The following blog is written the way that it is, in letter format, because of a wise friend who saw my Mama Pain in a brief vent on social media today and encouraged me to write something that informs parents from the perspective of a parent with a child who struggles. He is often the recipient of harsh treatment from perhaps well-intended parent volunteers. Sometimes, this has happened right in front of me at volunteer times in the classroom, and sometimes, my child tells me days later, in tears. He is sensitive, but not overly so. He knows not everyone will jive with everyone else. In his short school tenure, at age 8, he has had teachers he really clicked with and those he hasn’t. He knows not every person will really try to know him, and that’s okay. That’s true of life.

But I have been growing very weary of parent volunteers going in to a lower elementary school classroom lacking humor, patience, and compassion, especially for kids with struggles or who think outside the box, and “playing uptight parent” to someone else’s kid. I know the lower elementary school teachers benefit from rotations of parent help for reading times, math games, and research, and we have wonderful staff, but if a parent is going in to exert a power trip over little kids, perhaps they should not volunteer. I volunteer to help children and teachers but also now to babysit out-of-line parents. Happens every year.

Not on my watch.

In my opinion, being that harsh to a child with or without struggles (not their own child…mine or someone else’s) is without excuse. The school environment should be a safe place for little hearts.

Some of the most cutting, sharpest comments are made to my child by parent volunteers. Little Man sat at my breakfast table this morning in tears thinking he had done something wrong when he was being creative. (I cleared up the details of what was said, why, and if there was misbehavior or teacher intervention. There wasn’t.) His exact words: “She [snappy parent volunteer] connected with all of the other kids there but me. She didn’t make a good connection to me.” This was after letting me know what she did say to him. I spent part of the morning praying down my mother rage. I don’t even know her or her name.

It motivated me to write this. Thank you for reading it.

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Dear Elementary School Parent Volunteer:

There are a few things I would really like us all to know, to think about, to swirl around in our minds and hearts before we enter the classroom to help with math games, reading centers, research units. Going to volunteer training is not enough. We must go in deeply, firmly rooted in an understanding that we are not the parents of every child in that classroom. We can’t possibly know each situation, each struggle, each backstory, each tender heart. We do not know what each child faced that morning over his/her bowl of cereal.

  • He could have heard his parents threaten each other with divorce for the tenth time this week.
  • She could have heard that anger rising in the voice of a violent family member or encountered the malaise of a depressed or ill parent.
  • He could have had his fifth meltdown because the tag on the neckline of his shirt was irritating him.
  • She could have had a panic attack about the small oral presentation she had to give today for her book project.
  • He could have washed his hands 12 times before, during, and after getting dressed because he was worried about germs.
  • She could have struggled to get her math facts the night before, and everyone else in the class seems to catch on more quickly.
  • He could have struggled to write neatly and color in the lines because of a fine motor weakness.
  • She might not be able to focus because something happened on the bus on the way in that was too loud for her, too much for her to process at once, and she’s still in the middle of processing it.

Dear Parents: We don’t know whom and what we are walking into when we go in to help. We are not experts on the issues of all children. Let’s face it: Some days we don’t always even know the “right” approach for our own. We do not have full perspective.

We are not there to parent other parents’ children. The class discipline is really up to the teacher’s discretion and discernment.

Even if some of us have degrees in special education, social work, or child/family therapy, if we do not live with a child with those challenges, we only know the outside story. We do not know the inside one. We do not know what it is like to work around the challenges and struggles, big or small, typical or atypical, on a daily basis of those specific kids.

We also do not know what it is like to be a child with adults towering over him/her trying to be part of a “solution,” one that is assumed, while the child is silently trying to figure out where and why he/she is failing expectation.

Here are some things we need to remember: Everyone struggles with something. In any home, there may be:

  • academic super-achievers who are a little immature or socially behind
  • dyslexia and other learning disorders
  • developmental delays
  • autism spectrum
  • ADHD/ADD
  • anxiety/depression (yes, young children can legitimately struggle with these for a host of different reasons)
  • speech delays
  • processing disorders
  • a combo meal of several of these

And the list goes on.

Really, do any of us know what those all look like in individual children and families? Are we reading IEPs before we go into the classroom as parent volunteers?

Of course not.

So we need to allow for the fact some kids are going to be slower to process something, have trouble focusing, melt down emotionally more than another kid. We don’t have access to this information, but we absolutely should go into the classroom to volunteer wearing:

  • grace
  • patience
  • compassion
  • understanding
  • kindness

I’ve had a parent hover over my child who couldn’t complete a drawing/coloring task anywhere near the time other kids could. She kept on him as if he were her personal “fix-it” project for the day.

I wanted to say to her:

“That is not why you are in the classroom today. You need to let the school specialists help my child in that way. Your job is to encourage him, perhaps kindly redirect, but to help him at whatever point he is at. It is not to tell him over and over again he isn’t as quick as everyone else and to hurry up and catch up, and why is he coloring like that?

Your job is to keep him on task, to make sure everyone is including each other, to build these kids up, to make sure they understand the instructions.

Your job isn’t to roll your eyes when one kid is fixated on dinosaur facts. Or another talks louder than others.

Can you see inside his ear? Do you know if he has a hearing problem or processing disorder?”

No, we just work around whatever we find in the classroom. We don’t try to fix, control, or judge it.

One day, my child could not move beyond the glue on the end of his fingers that came off of a Valentine someone gave him. He thought it was a germ. A volunteer yelling at him to hurry up and finish his own Valentine wasn’t going to help him stop fixating.

Again, the voice in my head had an internal conversation with her:

“Because you don’t live with him, you don’t know that he is having a massive, internal panic attack, one that, not being visible, is almost more crippling. It’s not your fault you can’t see it, but please approach him with kindness and not judgment. He is my ‘project.’ He was given to me. Along with specialized staff, I’ll take it from here. Please know your part is just to do classroom tasks and not to make everyone fit into the same size box of expectation.”

To be fair, I see so many parent volunteers do it well. Because they bring grace in with them—and the perspective that they do not “know it all” and can only come at it from their own limited experience. Just like mine is limited. We each come in with only one piece of the puzzle.

Like all of the adults in the school building directing small kids, volunteers make an impact and leave an imprint. My son often receives the message that (his exact words): “She connected with all of the other kids there but me. She didn’t make a good connection to me.” Young kids are smart, intuitive, and sensitive. They know when adults don’t like them or are irritated.

For 45 minutes, can we please just walk in, turning off the following buttons in our minds and hearts (we all have them):

Judgment
Diagnosing
Criticism
Impatience

Can we please go, approaching tender hearts as if we didn’t have all the answers yet?

Because none of us do—even in our own homes and situations.

Let’s take the burden off ourselves and let the staff “figure out” the kids. Some kids might not read as fluently as the rest of the class or color inside the lines. Let’s meet them right where they are and just grace them to the next logical step, or even just help sustain the learning of the moment.

Today might be a rough day. A child may have already been necessarily corrected by several staff at this point. He/she might be weary, frustrated, or sad.

If you have three to five adults (parents, teacher, principal, special services teachers, specials teachers) in your life every day that you expect to be leading you, having several more in your face—some outright strangers—can add stress when you’re 5, 7, 9.

Let’s go in and be stress-reducers, speaking in soft tones.

Let’s remember how our kids are all still works-in-progress—how we all are.

Sincerely,

The Concerned Parent of a Child Who Struggles

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In the middle of writing Not Just on Sundays, I heard the squeaky, growing voice of my youngest child begging to be heard, and a children’s book deposited itself into my heart; I asked all three of my children to collaborate with me. It attempts to shed light on how it feels to be a child when adults aren’t really listening to them. Why Don’t Grow-Ups Listen? should be out in 2015/16.

*This blog can also be found at Mom 2 Mom Monday Link-Up #25, Make a Difference Mondays, Pick Your Pin TuesdayFaith-Filled Fridaysand Grace & Truth Link-Up.

 

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