by jphilo | Jul 1, 2011 | Different Dream, Grief, Spiritual Support
Independence Day 2011 is just around the corner. In honor of the holiday, guest blogger Scott Newport shares some memories from last year’s Fourth of July.
Old Planks
Over the Fourth of July I went by a small, roadside flea market looking for old hardware for some of my wood projects. Occasionally at these fine venues I will find the perfect handle for a small box I have built. This was not going to be the case this time, but just before I walked out I looked up in the rafters of the old warehouse and saw a piece of wood peeking out at me. It was covered in dust and held in place by other twisted boards, a couple of strips of plywood and one old metal bed frame.
I found a rickety, wooden stepladder leaning against a marred post and dragged it over to the edge of the mezzanine. As I unfolded the A-frame ladder I wasn’t sure if what I was doing was going to be safe. The ladder reminded me of one I had been up on a few years back. An elderly neighbor had asked me to check her roof and told me there was a ladder in the garage. “Hey Scott,” she yelled from the side door, “Don’t worry, my husband bought that at Sears before he died. It’s really made well.”
I soon found myself on the third creaking step and figured it was now or never. Actually, never started to ravage my mind and the only, now part was, “If I take one more step I’m surely going to fall and break my neck.” Luckily my brother-in-law was with me, and he also started to get excited about the board. He told me not to move, and he would maneuver his way through the plies of “sale” items and try to push the board from the other side. After about five minutes of reorganizing the heap of stuff, together we were able to release the piece from its irons.
“How much for the board?” I gasped, now out of breath and heating up from the summer’s day.
“What about four dollars?” shimmered out the elderly man’s voice.
His wife, who looked to be about eighty-five said, “We may have some more boards like that buried in the trailer next door.”
I couldn’t help but laugh to myself as I started climbing down. The expressions on the old couple’ss faces were the same. Their wrinkled faces each were in competition to be the first to say, “See honey, I knew someone would buy that.”
It was also funny as the other patrons of the roadside shopping had glares like, “You gotta be kidding, what in the world would anyone do with that ugly piece of wood?”
My brother-in-law, still excited himself, pointed out another piece of rough-sawed wood, and I was out another four dollars. I dug out eight, single crumpled dollars out of my wallet and handed it to the cashier. My brother-in-law told me later she was the couple’s daughter.
We found some old twine in a crumpled, metal box the ol’ man pointed to and soon had the wood tied to the top of the car and headed back to my folks’ summer home.
When we pulled up into the driveway I was happy to see that Penni and Noah were not there but down at the beach. I was sure if she would have seen us she would have given me some grief about potentially damaging her car.
When she returned she never said a word about the wood. I figured she knew what a tough time I was having over the last couple of days. You see this is the first Fourth of July at Lake Michigan we didn’t have Evan with us. Even though she never said it, I knew she must be feeling the same way, too.
The two, eight foot planks made the 180 mile trip back to our home and by the next weekend I had beautiful plans in my head for the pine boards. I ended up needing a small stretch of redwood to finish the project.
In the end, I was able to build two benches out of one of the planks; one bench smaller than the other. Since the wood had a few nasty knots in it, four of the legs had to be shortened.
So really now I have a child and an adult size bench.
As you may know one of my missions in life is to teach folks about damaged unwanted goods, kinda like some of our children with disabilities. Evan sure had his imperfections, but I always seemed to look past them and focused on his beauty.
I know some people don’t see it that way, I guess I am just lucky or God has given me the gift to see the beauty in things like that old dusty plank, the one covered up in the attic, hidden away, seemingly worthless.
Where Have You Found Value?
As Evan’s dad, Scott learned to see value and beauty in old planks others found worthless. How has your experience with kids who have special needs made a difference in how you perceive worth? If you like, leave a comment to share what you now find beautiful.
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by jphilo | Jun 29, 2011 | Different Dream, Encouragement, Spiritual Support
Yesterday in Part 1 of Something About a Booger, guest blogger Amy Stout wrote about the many years she and her husband waited for their daughter’s first meaningful sentence. When the great day came, Kylie looked at her daddy and said, “I want booger out, please!” Since that momentous event, Amy has drawn some spiritual applications guaranteed to make you smile, too.
Something About a Booger, Part 2
Far away there in the sunshine are my highest aspirations. I may not reach them, but I can look up and see their beauty, believe in them, and try to follow where they lead.
~Louisa May Alcott
As I have contemplated all of these happenings in our lives I am brought back to a couple of passages that have meant so very much to me over the years. They were a comfort to me when my husband was away for weeks at a time (in the military), during the pain and lessons learned through infertility, during our adoption process, during the 6 months that Dan was unemployed and now as we walk with our Kylie experiencing autism.
A Reason For Faith
Romans 8:25: But if we hope for that we see not, then do we with patience wait for it.
Proverbs 13:12: Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.
Jeremiah 33:3: Call unto me, and I will answer thee, and show thee GREAT and MIGHTY things, which thou knowest not. (emphasis added)
As a believer, I have great personal faith in my God. To some, it seems simplistic, but when you have seen what I have seen…. well, let me share just one (quick) personal testimony….
When I was a teenager, my dad lost his job. I am the oldest of four children and my mom had always been a stay at home wife/mom. So, when my dad lost his job, we had no income.
Thanksgiving Without a Turkey
I remember when Thanksgiving came that year, my mom was particularly disheartened as we did not have the typical Thanksgiving groceries required to prepare a traditional dinner.
We kids were pretty unaware about what was going on, but I remember one afternoon my mom gathering us on the couch and explaining to us that we had no food for Thanksgiving and that we were going to pray for a turkey.
At the time, I initially felt a bit of shock… Thanksgiving without a turkey? and then I felt a little sheepish… we were going to pray for a turkey???
I remember making a conscious decision to go along with it and just see what would happen. (Even though I didn’t really believe that God would care about something so silly.)
The 5 of us, my mom and we kids (age 4 to 15) lined up on our knees and asked God for food. Not just any food, but Thanksgiving food – in particular- a turkey.
When we were finished, I still felt embarrassed and rather sheepish.
We went on about our day.
Thanksgiving With a Turkey
That afternoon, there was a knock at our back door. It was a preacher friend of my dad’s who lived really far away. My mom was completely shocked to see him and, even more so, that he had thought of us (as our paths didn’t cross often). He explained that their family and church had been praying for our family and God had led them to bring us a box.
Yes, you guessed it… In that box was everything we needed to make a traditional Thanksgiving dinner – especially a turkey.
My faith changed that day.
I saw that the Great BIG GOD we serve cares about the insignificant, silly, desires of our hearts. That GREAT BIG GOD made sure that HIS KIDS had a turkey for Thanksgiving.
If God cared about a turkey, how can I doubt that he cares for my family now? God knows what our Kylie experiences. He hasn’t forgotten about us. He is working to show us “GREAT and MIGHTY things” that we cannot even fathom.
My God Has a Sense of Humor
He even loves us enough to give us a bit of blessed laughter in the form of Kylie asking Dan to pick her nose! My GOD has a sense of humor – and we will laugh about that for years to come!
Thank you God for your GIFTS (even if they are in the form of a turkey and boogers)!!
He who believes is strong; He who doubts is weak. Strong convictions precede GREAT Actions.
~Louisa May Alcott
How About You?
So, how has God revealed His sense of humor through your child? Leave a comment so we can laugh along with you. To read more of Amy’s posts, visit her blog at www.histreasuredprincess.blogspot.com.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Jun 28, 2011 | Different Dream, Encouragement, Spiritual Support
Guest blogger, Amy Stout, and her husband Dan waited a long time to hear their daughter Kylie speak on her own. The day she made her needs known to her daddy was a flag-waving, yahoo-shouting, tear-jerker-of-a-moment. But, as Amy explains, she and Dan burst out laughing instead. And you might, too…
Something About a Booger, Part 1
Painful as it may be, a significant emotional event can be the catalyst for choosing a direction that serves us- and those around us- more effectively. Look for the Learning.
~Louisa May Alcott
I remember the day that my daughter made her first request. A therapist from Early Access was working with our 2-year-old baby girl and, honestly, it was painful to watch. My daughter wanted a puzzle piece and the therapist kindly and gently refused my daughter her desire because she didn’t use her words.
I remember sitting there feeling tortured wanting to scream at the therapist.
I was an expert (and still am) at anticipating my daughter’s needs and meeting them before she had/has a chance to be uncomfortable.
I remember my daughter extending her sweet little hand and reaching for the puzzle piece. It was just out of her reach. She then began pushing at the therapist. She was getting more frustrated and more frustrated. Soon little tears welled up in her eyes. I could tell my girl was going to break down any second.
I Wanted to Shake the Therapist
I felt so enraged inside; I wanted to shake the therapist! How dare she make my daughter cry over a puzzle piece! Honestly!! Is this really how we are going to teach her? I was quite upset! I wanted to gather my baby in my arms and shower her with puzzle pieces and hug her hurt feelings away.
I don’t know how I kept my composure, but I made a huge effort to staple my mouth shut and sit on my hands. It took everything I had. I wanted nothing more than to rescue my girl (and throttle the therapist — did I just say that?)
I Want Puzzle
About the time that my daughter’s tears were ready to drop on her precious baby cheek, the therapist said (for the 10th time…) “I …want…” – the silence was deafening, but then, my baby opened her mouth and said very quietly “I.want.puzzle”
A bomb could have dropped in my living room and I wouldn’t have been phased! I was so shocked to hear my daughter speak. I felt as though I couldn’t breathe. In slow motion, I looked at my husband and noticed that we both were weeping. We embraced and rejoiced over what beautiful music her voice was!!
I have since wondered what would have happened if I had followed my instinct to rescue my girl. Would she be talking now?
I am not afraid of storms, for I am learning how to sail my ship.
~Louisa May Alcott
Three Years Later
It has been 3 years since that day and still my daughter has significant trouble communicating. 95% of the things she says are a form of echolalia or parroting (repeating phrases she has heard in movies, lines from books or etc).
It is heartbreaking. There is so much we want to know about our girl… what is her favorite color? Does she like her room? What does she want for her birthday? How would she like to spend a day? Where/what would she like to eat for dinner? How does she feel about things?
So many answers are locked inside our girl.
It is especially difficult when the general public are kind enough to try to interact with our girl. It might be the checker at Walmart or the greeter at church It becomes Dan and My responsibility to “smooth things over” for these kind people so they are not embarrassed. We often tell Kylie what to say and she dutifully repeats it.
Hooray for Sign Language
Though we did have one surprise: When we realized that Kylie was going to have difficulty with communication, we began to teach her sign language (www.signingtime.com – I can’t say enough positive about this program). Kylie was a quick learner and we found that while she would not speak appropriately or in a meaningful way, she would sign. One evening, at Walmart, we were paying for our purchases when we realized that our checker was deaf. She signed to Kylie and – much to our surprise- Kylie signed back. The checker was completely shocked and it meant so much to her!!
Over the past three years, Dan and I have often wondered what Kylie’s first APPROPRIATE and ORIGINAL sentence would be. Well, this past week we found out.
The three of us were in the living room and Kylie was trying to tell Dan something. He was clearly having a hard time figuring out what she was trying to say and she was quickly getting frustrated. He looked at me for help (As I care for her 24/7, I usually can follow/discern what it is she is wanting).
She Was Trying to Tell Us Something
I realized she was saying something about “booger”… she was getting more and more animated and even I was having trouble… I finally took a step back and said “Kylie, tell Daddy what you want”… (then I prompted) “I want..” Kylie looked him right in the eye and said plain as day….
“I want booger out please!”
It was hilarious! Not only her choice of things to ask for, but the look on Dan’s face when it dawned on him that she wanted him to PICK HER NOSE!!!
So THIS would be her first appropriate and original/meaningful sentence. I LOVE IT!
I am so excited for what is to come. (you can bet I am writing all of this down)
Come Back Tomorrow!
Now, this story is pretty funny the way it is. But you have got to come back tomorrow for Part 2. In it, Amy draws some amazing and hilarious conclusions related to Kylie’s first sentence. Believe me, you won’t want to miss it. Until then, read more of the adventures of Kylie at www.histreasuredprincess.blogspot.com.
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by jphilo | Jun 24, 2011 | Different Dream, Grief, Spiritual Support
How to Cope with Special Needs Grief
Today’s post by guest blogger Laurie Wallin addresses an issue parents of kids with special needs face every single day. Grieving the family life they will never have. And she gives some practical advice about how to deal with special needs grief. Read on!
How to Cope with Special Needs Grief
Recently I left my life of raising special needs kids for 3 days of complete relaxation. I visited my mom in Arizona and enjoyed meals out, sleeping in, and lots of shopping (sans racing from the premises with tantruming 8-year old). It was a delight.
But of course all things must end. Including the good stuff. Coming back from a time away from my older two girls, whose adoption-inspired attachment struggles still rage, is not an easy thing.
As I walked from the airplane arrival gate to the baggage claim, the stress I’d left behind on my trip caught up with me. And I realized that I needed to do a little intentional grieving before I went home to my “normal” life. Not because I’d had a major loss, but because as a parent of special needs kids, I know that managing the small losses and changes makes me a healthier mom for them.
How to Grieve the Daily Stuff Well
Grief has stages, and they don’t flow linearly. We bounce all over the place, staying in one for a time, then moving through others… then back again. The following is an excerpt from a post I did on grief on my blog last year. Considering grief comes up for us all periodically, here’s what everyday grief might look like:
“This is NOT happening!” (aka Denial): It’s okay to ignore it for a little while. It’s just too heavy to deal with special needs grief every day. Sometimes I freak out about finances, and I earn bank fees for neglecting to pay bills on time. Or binge on Grey’s Anatomy for 3 hours after intense mood or behavior days with my older girls. But I give trusted people veto power over my head-in-the-sand moments, so they don’t add more stress.
“What did I do to deserve this?! This sucks!” (aka Anger): Loss creates raw rage at times. The patched holes in my bedroom walls attest to that. I did, eventually, get tired of patching holes, so I joined a gym. Now I punch a big bag, run like crazy on the treadmill, and lift weights until I can barely move. I also write through my anger—with big, dark, ugly words—so my feelings can air out, and my relationships can survive. (And I bought giant Incredible Hulk padded fists to punch the walls, in case I still need that some days…)
“Maybe if I volunteer at my kids’ school 20 hours a week, my life will _______.” (aka Bargaining): We need to feel some sense of control and normalcy in the midst of our grief. So we try to make deals with the universe and God. Some bargains are helpful (“If I sign up to take one meal to a family in crisis, I will feel like a capable person again.”) Some aren’t (“If I tirelessly, perfectly implement all therapies the doctor recommended, my child will become normal.”) When I choose the meal, I have dignity again. When I choose perfectionism, I head straight back to anger…
“Yes, I’m still in my pajamas… from yesterday.” “Please pass the death-by-chocolate ice cream.” (aka Depression): I’ve been struggling with this one for the past month, thus the intense posts. Depression is the part we imagine when we think of grief—the sadness, hopelessness, or helplessness that feels like it will overtake us. In those moments, I am extra kind to myself. I cut out multi-tasking (because it’s going to self-destruct anyway). I drink more water. Go for walks. Take a nap when I can. Pet my dog. Take a day off from life to watch movies and snuggle, which the kids know as PJ day. When we let our bodies have down time, and there isn’t any underlying medical condition, we become quieter. Which moves us toward…
“You’re a spaz, but you’re my spaz, and I wouldn’t have it any other way.” (aka Acceptance): Here’s where the healing feels real. Is life still frustrating? Yes. Nearly impossible half the time? Yes. But I’m still smiling now. And I can love my kids through their 3-hour meltdowns, ignore my dirty dishes, forgive the check-out lady for her naive comment on my parenting, and basically feel good about myself through it all. It’s where I write a letter to the kid I dreamed of, complaining about the one I actually got… and end up crumpling it up and tossing it. Because I realize I’m in love with my real-life wierdo.
What things do you find helpful in seasons of special needs grief? I’d love to hear your ideas.
Leave a Comment
Please leave a comment about how you handle your every-day special needs grief.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop-up box and the second at the bottom of this page.
Laurie is the mom of four daughters–two adopted with developmental delays, mood disorders, and ADHD. A former junior high teacher turned speaker and life coach, she loves to learn, laugh until their sides hurt, and help women be courageous in life.
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by jphilo | Jun 10, 2011 | Different Dream, Encouragement, Spiritual Support
In Wednesday’s post, guest blogger Scott Newport described a vacation trip to the swimming pool with his sons. At the pool, his son Evan became friends with a little girl named Renee. Evan was unable to communicate verbally because of Noonan’s Syndrome, but used sign language. Renee, a child with Down Syndrome, communicates both verbally and with sign language. They were perfectly at ease with one another, but as Scott shares in this part of the story, some of the onlookers were not quite so comfortable.
Broken Down Signs
When we left the pool that day, we’d made a new friend. As I started to push Evan’s stroller toward the exit, Renee ran up to me, tapped me on the back, and gave me a big hug and a kiss on the cheek. No words were spoken as we embraced but the message was mutually clear. I turned away with a smile that matched the one on her father’s face. He didn’t wave as we left, he just nodded his head. I knew what he meant.
People Don’t Understand Sign Language
There’d been many a head turned that day around the pool…not toward us but away from us. And I don’t know how many times I overheard kids asking their parents, “What’s wrong with them?” I guess people don’t understand sign language. Or maybe they just don’t like to look at people that seem to be broken.
As Noah, Evan, and I walked home from the pool, we ran into a woman we hadn’t seen in a year or two. Noticing our “language” of hand signals and obnoxious grunts, she squinted her face and asked, “Does he even understand what you are saying?”
“Yes,” I replied, just slightly offended.
I wanted to say, “I know he doesn’t speak…and I know he can only sign one or two words…and I know those signs aren’t done perfectly…but he does like to listen to singing…and he does like to go to the pool!” Hmmmppphhh.
What Comes Out of Peoples’ Mouths
Back at home, Evan and I sat on the front porch, swinging in the creaking wooden porch swing. We let the warm lake breeze put our souls to rest. As we rocked together, I wondered about speech and about how we communicate our wants and needs and about how sometimes things just seem to come out of our mouths.
And I thought about some of the things that have come out of peoples’ mouths upon meeting Evan for the first time:
“How do you know what he’s saying?”
“Does he love you?”
“Does he like to play?”
“How do you know if he’s crying?”
“Does he even know he’s sick?”
“Is he broken?”
Does Evan Speak?
For each question asked, I could write so many heartwarming stories about Evan that the book would never end. Which begs the question: Does Evan speak? Yea, I think so. Just think for a moment: When a wife looks at a husband, puts one hand on her hip, taps one foot and slightly cocks her head, what does it mean? Ahhh, any guy knows! She’s mad about another dumb thing he’s done. You see, all communication is not verbal.
Renee and Evan, they speak a language made up of imperfect and incomplete signing, verbalizations that are unintelligible to most people, facial expressions, and body language. Very few actual words, if any, are required. I guess Renee’s dad and I have the gift of being able to look past the broken signs to the heart of the message. Along the way, I’ve met a number of people—mostly parents of kids with special needs—who have this same gift.
One More Sign
I’ll end this story by telling you about one more sign. There’s a church in my hometown with a roadside sign that says: “Sign broken, message inside.” I think that says it all.
Scott (Evans dad)
Read More of Scott’s Stories
Leave a comment about how your child with special needs communicates. Or leave a comment for Scott. To read more of his posts, type “Scott Newport” in the search box.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
by jphilo | Jun 8, 2011 | Different Dream, Encouragement, Spiritual Support
Summer time means vacations, visits to new places, meetings with strangers who may not understand your child’s special needs. In today’s post, guest blogger Scott Newport relates a chance vacation meeting between his then four-year-old son Evan and a little girl named Renee.
Broken Down Signs
Signs are all around us. Signs point the way. They tell us what we’re allowed to do. They tell us where we’re not allowed to go. They keep us from getting lost.
This is a story about signs—all kinds of signs.
The Story Begins
The story begins at the home of my folks, near the Lake Michigan shore. It’s not where I grew up, but it’s where my parents have decided to retire, and we’ve visited them often enough over the years that I guess it’s a bit of a “home away from home” for our family.
We used to visit quite often. These days, we don’t make it up there as often as we’d like; it hasn’t been easy to travel ever since our son Evan—now four years old—was born with a terminal heart disease called hypertrophic cardiomyopathy and a variety of other complications brought about by a genetic condition called Noonan’s Syndrome.
Time for R & R
This year, the family—my wife Penni, our seven-year-old son Noah, Evan, and Evan’s nurse—traveled to Lake Michigan to visit my folks and get some much needed rest and relaxation.
One afternoon just a few days into our vacation, my sons and I walked to a large community swimming pool. Since it’d been a while for all of us, we weren’t exactly sure which roads led to the pool.
Noah said, “Hey Dad, I think we’re supposed to turn here.”
“The street sign looks like it’s been run down by a car,” I replied. “How do you know this is the right place, Son?”
“Just trust me, Dad.”
Well, he was right. The pool was just around the corner. That broken-down sign didn’t keep us from finding the pool…or from making a new friend that day, a little angel named Renee.
A Little Angel Named Renee
Actually, we met Renee’s dad first; my brother-in-law introduced us. He was about my age, probably six feet tall, wearing a T-shirt about Down Syndrome. As other parents around us sunbathed and caught up on the latest gossip, I told him that I had a child with a syndrome, too.
In truth, I’d already noticed Renee, though I didn’t know that was her name. She was hard to miss; even though there were close to 100 kids in the pool that day, she sparkled. I liked that about her.
Her dad called her over to us but she flew past, as if she had wings. “Renee,” he said again. “Come here, sweetie, I want you to meet someone.” Renee’s fine hair framed her face, which had typical Down Syndrome features. Her brown eyes glittered with life and intensity. When she spoke to her dad, her speech was a bit broken and monotone, though he didn’t seem to have any trouble understanding her. He introduced her to Evan and me.
“Hi Renee,” I said, as I got down on one knee. “Would you like to sing The Bumble Bee song with Evan and me?”
More Music, Please!
We all three sat down and I started singing the little tune. To my surprise, she jumped right in as though she had been rehearsing for weeks! As we sang, Evan—who doesn’t speak—let out an occasional happy squawk. When the song ended, Renee babbled excitedly. Because I had a hard time understanding her, I asked what she was trying to say. She amazed me by signing with her tiny fingers, “More.” My heart melted.
I signed back: “More music?”
She again signed with her fingers. This time she signed, “Please” by placing her hand over her heart and moving it in a circular motion. She was so precious.
More Signs to Come
Scott, Evan, and Renee didn’t have any trouble communicating with one another. But other people at the pool weren’t quite as adept at looking beyond the obvious, as Scott explains in Part 2 of Broken Down Signs. So come back on Friday for the rest of the story. You won’t want to miss it!
Until Friday
While you’re waiting for Friday to roll around, leave a comment for Scott if you like. Or type “Scott Newport” in the search box at the top of this page to find more of his guest posts.
Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.
