by jphilo | Feb 16, 2012 | Different Dream, Encouragement, Spiritual Support
Yesterday, guest blogger Rebekah Benimoff shared an important lesson about prayer she learned during her son’s recent, chaotic medical crisis. Today, she shares about allowing the breath of God to renew and refresh the spirit in this series about special needs lessons learned in the midst of chaos.
Breathing in the Midst of Chaos
Within 20 minutes Tyler’s blood glucose (BG) was nearing normal. The energy level in the room dropped considerably, though no less than three staff members watched over us for the first few hours. Despite the low BG episode, Tyler still had massive amounts of sugar in his bloodstream, and large levels of ketones needing to be cleared. Blood tests and IVs were ordered, and Tyler was a trooper through all the poking and prodding. Meds were given to calm the stomach convulsions, and soon he was asking for something to drink. My anxiety level lessened considerably at this point.
When I had a moment to update those praying for us, my husband urged me to call for a chaplain. “You need care too!” He recommended two chaplains he had worked with before he took time out to seek treatment for post-traumatic stress disorder (PTSD). The chaplain on call responded quickly, and I have to say that the provision of someone who listened as I aired out the anxiety of those first hours was a great gift.
Though the worst had passed, seeing my son turn gray and absorbing the urgency of the staff members had caused quite a trauma to my mother’s heart. I did everything I could to help him, and yet the situation was beyond my control. I will admit that I was terrified. We’ve dealt with low BGs before, but I never get used to seeing my baby in the midst of a life-threatening emergency. I needed to decompress, and the urgency of the moment did not allow the usual release that tears always bring. Talking about how scary it had been for me eased the pain and moved me towards recovery from what Tyler and I had been through.
Before she left, the chaplain prayed with Tyler and me. She held our hands and comforted us with a prayer that reminded me to take time to just breathe. To allow God’s cleansing breath to move through Tyler and through me and bring restoration of body, mind, and spirit. This time of prayer left us both Tyler and myself better comforted, and calmer than before.
Part 1
Part 3
Lesson Two Complete
Thanks to Rebekah, we just found a second life lesson, even in the midst of chaos. Through prayer (yesterday’s life lesson), we allow God’s cleansing breath to restore us. Have you ever had a restoring, refreshing moment like Rebekah’s? Leave a comment so everyone can get better at recognizing those moments in the lives of others and hopefully, in their own lives, too. And come back tomorrow for Rebekah’s final lesson.
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by jphilo | Feb 15, 2012 | Different Dream, Encouragement, Spiritual Support
Today’s guest post comes from guest blogger, Rebekah Benimoff. Rebekah is well-acquainted with care giving since her husband and two sons have special needs diagnoses. For the next three days, she will share special needs lessons learned through recent chaos caused by her son’s wildly fluctuating glucose levels due to juvenile diabetes.
Praying in the Midst of Chaos
There are times when I am incredibly grateful for the blessing of modern medicine- and the accessibility we have to it. Today was one of those days. It started at 4 am, when my oldest son began throwing up uncontrollably. Distressing for any parent, but especially so with a child who has Type One Diabetes. Tyler’s blood glucose was over 400 and he had very large amounts of ketones spilling into his bloodstream. His breath had a strange “sweet smell” and he was approaching DKA- which can be life threatening if not treated quickly. When there are high ketones presents, the doctor calls for large doses of insulin to bring down the BG levels, through a syringe, not the insulin pump. But I coaxed him, and he submitted, though he “hates needles!!” We cleaned him up, and changed out his insulin. Then we headed towards Children’s Medical Center of Dallas as quickly as possible, first sending a shout out for prayer. The endocrinologist on call phoned ahead and let the ER staff know we were on our way- and they were ready for us when we arrived. (Another thing to be grateful for: our ER staff does not mess around with diabetes issues.)
About the time we were admitted, I noticed a change in Tyler. He was ashen, all the color had drained from his face, and his legs were shaking. I grabbed the glucometer and a quick finger stick revealed that his blood glucose levels had plummeted down to 35 (normal is 130). I grabbed a lollypop from my “fast sugar” supply in my purse, and we were rushed us back into the ER, the nurse and me supporting him. Within moments all kinds of staff members were rushing around the room- at least 7 at once, and another 2 others running down the halls calling out “Diabetic emergency. Call a doctor NOW.” This accomplished the desired effect of two physicians showing up, but not before I was holding off the beginning stages of panic, due largely to the frantic activity surrounding me. I held Tyler’s hand and stayed close, breathing a prayer for help, while soothing him, “You’ll feel better soon, baby.” Amazingly he had not passed out.
In moments like these, prayer is my life line. There are times when I’ve done all I can do for my son, and I have to wait. I do have a choice, though: tunnel into myself and “survive” the trauma, or reach out to the One who holds me through the chaos. In cases like these, I’ve heard people say, “All we can do now is pray.” No. The TRUTH is that prayer is our best strategy. Admitting our lack of control and surrendering the one we love to the One who loves them more- yes, this is the only path that leads to any measure of peace. Control is an illusion, but the God who meets us where we are is real and available. His promise is this: Come to Him authentically, bringing whatever you are struggling with, and He will BE with you.
Part 2
Part 3
Special Needs Lesson One Complete
Thank you, Rebekah, for reminding us of a vital life lesson. We can pray in the midst of chaos caused by our children’s special needs. Our prayers not only ground and calm us, but also calm our children as they sense our peace. Rebekah and I would love to hear about your experiences with prayer in the midst of special needs chaos. Leave a comment to share your story about how you learned or practice this faith-building lesson.
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by jphilo | Feb 14, 2012 | Different Dream, Special Needs Ministry, Spiritual Support
Happy Valentine’s Day to everyone in special needs land!
Riding the Sugar High
Between snitching the candy your kids brought home from school parties and/or celebrating the holiday with your sweetie, maybe you’re riding a sugar high. With that in mind, this post is a short and sweet peek at a sweetheart of a Key Ministry resource.
I’m In Love with Key Ministry
If you’re a regular DifferentDream.com reader, you know I’m in love with Key Ministry. If you’re a first time reader, you may want to check them out. They provide free (yes, free) resources for churches and advocates who want to start special needs ministries in their communities. Dr. Steve Grcevich, the founder of Key Ministry, and Katie Wetherbee, KM’s educational consultant have blogs jam-packed with resources, features, and sound advice.
A Valentine’s Day Treats
Last month they created two more sweetheart pages at Steve’s blog. The first is a compilation of all the links to their most popular series of 2011, Thinking Orange…Family Ministry Strategies When Families Have Special Needs. The second is a compilation of links to their most popular series of all time, ADHD and Spiritual Development.
Savor These Sweet Treats
Once you’ve had time to savor these sweet offering, maybe you’ll want to return to DifferentDream.com and leave comment about your favorite link. And considering the day, a comment about your favorite Valentine’s candy is acceptable, too. (Mine are Russel Stover coconut-filled chocolates, in case you still need to purchase my gift.)
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 | Dec 19, 2011 | Different Dream, Special Needs Ministry, Spiritual Support
Brian Rizzo is one cool dude. In 2008 when he was 14 years old, he was working on his Eagle Scout badge. Because his younger sister lives with autism, he developed a special needs library for his church parish. Like I said, one cool dude.
But Wait, There’s More!
Turns out, that project was only his first contribution to the special needs community. He then worked with his parents to develop learning tools to help children with special needs prepare for their First Eucharist. Because of Brian, the Adaptive First Eucharist Kit can now be purchased through Loyola Press.
Marla Murasko and Special Moms Entrepreneur Club
Special Needs Ministry: Adaptive First Eucharist Kit came to my attention via a blog post by Marla Murasko at Special Moms Entrepreneur Club. One Sunday, her family’s parish announced upcoming confirmation classes. She searched for materials that would allow her son (only 5 1/2 at the time, but as parents of kids with special needs know, it’s best to start looking early) to further his religious education when he was older.
Take a Look at What’s in the Adaptive First Eucharist Kit!
Though I am not Roman Catholic, I was impressed with the contents of the Adaptive First Eucharist Preparation Kit. Each kit includes:
The Adaptive First Eucharist Kit for children with autism or other special needs includes eight pieces:
- My Picture Missal Picture Book and Mass Picture Cards are for use at Mass. They help the child maintain focus and actively participate in the Mass.
- Bless Yourself Matching Puzzle helps the child learn how to make the Sign of the Cross. This activity can be paired with parent or catechist modeling so it becomes a gross motor imitation task.
- Who Is Jesus? Instructional Story introduces the child to Jesus as the Son of God and relates God’s family to the child’s family.
- Communion Is Not the Same as Food Matching Puzzle helps the child distinguish between the Eucharist and ordinary food.
- How to Receive Communion Matching Puzzle shows all the steps of receiving Communion reverently, providing a guide for the child to practice. This learning tool may be taught with sequencing or modeling.
- I Receive Communion Social Story is a book that reinforces the reverence and proper steps of receiving Communion.
- Helper Guide includes tips on how to use the kit.
- A backpack so the child can transport the items from home, faith formation sessions, and Mass.
Every Denomination Needs Someone with Brian Rizzo’s Vision
If every Christian denomination had someone with Brian Rizzo’s vision, the church could share the hope of Christ with many more children who have special needs. We need to work together as Christians to spread the word about resources for special needs ministry across denominational lines. So if you know of products for special needs ministry or people who make them, leave a comment. Let’s help Brian reap a mighty harvest for the Kingdom of God.
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by jphilo | Dec 1, 2011 | Different Dream, Grief, Spiritual Support
5 Tools to Overcome Special Needs Grief
Laurie Wallin is at DifferentDream.com today. She’s sharing from her heart about the special needs grief she’s experiencing this holiday season. She also shares five strategies to help her (and you) ride the waves of grief that accompany this season of joy.
5 Tools to Overcome Special Needs Grief
Holidays have a different feel for us as special needs parents. There’s always a hint of grief, whether simply in the fact that our child can’t stand unassisted to place that ornament on the tree, or their mood disorder prevents participation in the school holiday show.
Or, sometimes, it’s acute. Something that’s dug a hole through our sense of joy and wonder this season. Grief can sneak up on us when we least expect it.
Do You Have Any Pictures of Your Kids?
This happened to me the other day, suddenly. In the middle of a meeting where we discussed things that seemed safe—topics seemingly unrelated to the tender place in my heart. A friend asks an innocent question: “Do you have any pictures of your kids?”
“Of course I do!” I reply, pulling my phone out and scrolling through snapshots filled with grins and antics that animate life in a family of six.
Except in the photos it’s only… five.
Screen after screen I scroll through faces. Dozens of images… and she’s not there. Has it really been that long?
And the tears ambush me. Hot and bitter. I curl over, laboring to breathe through grief that blurs images in my hand. Where is she?
Where is my little redhead?
She’s in a center for children who hurt deeper than their families, doctors, and specialists can manage to heal. She’s in a place that’s not home. As we unpack decorations and bake pies this holiday season, she will miss more photos. She’s already missed so many. She’s missing our life… and we’re missing hers.
Your Grief May Surprise You, Too
As holidays unfold this year, your grief may surprise you like that, too. In the middle of a mall. In a meeting at work. Driving down the street past a favorite place. A reminder that the pain isn’t really gone. It’s just waiting for a little air to breathe. One small crack of a window and it floods in again. In those ambushed moments, we can still see good this holiday. We can fight the despair with powerful tools that strengthen grieving hearts.
5 Tools to Overcome Special Needs Grief
- Get a grief buddy. Take a friend to coffee and ask if they’d be your “I feel like crap today” friend. Someone you can email or text or just call and know they’ll listen and won’t need you to smile and have it all together. And someone who loves you enough to tell you it’s time to get up, give the Kleenex a break, and let the good in too.
- Find a comforting book, CD, or Scripture passage for this season. Read it every morning as you awake, allowing yourself permission to cry, question, and sometimes just feel numb. Choose to trust that resource to inspire and strengthen you… to fill in the gaps the tears leave behind.
- Go for a walk. Plan some time each day to get your heart pumping, whether it’s a walk around the block, vigorous house cleaning, or popping in that exercise video for 20 minutes. Endorphines released in your body will lift your mood and allow you a healthy way to expend the grief energy that sometimes feels overwhelming.
- Invest in others who are struggling. Give an evening to a battered women’s shelter, collect shoe boxes filled with personal care items for poor kids abroad, write letters to service men and women deployed across the world. Others are grieving this holiday, too. As we reach out, we remember we’re not alone.
- Plan quiet moments in your holiday busyness. The grief will surge, so give yourself space to let it. Make a 6-week calendar and plan events through the end of the year with your family, making sure there are days—even stretches of days—that are unplanned. Just allowing space in your schedule keeps away the stress that exacerbates a broken heart.
This season may feel different for me, my little girl, our family. It may be different than normal for your family too. But the joy that marks it can still be ours—real, deep joy and peace—when we let ourselves do what we need to care for our hearts.
In comfort,
Laurie
How Do You Ride the Waves of Special Needs Grief?
Is grief part of your holiday season this year? What tools help you cope? This is a safe place to share your grief and the strategies that give you strength to go on. Laurie and I would love to hear from you.
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 | Nov 1, 2011 | Different Dream, Encouragement, Spiritual Support
Yesterday, guest blogger Kathy Guzzo shared her initial reaction filled with special needs anxiety when her daughter Andrea announced she was planning to run in the Chicago Marathon. Today, Kathy explains how she came to accept her daughter’s decision and what she learned as her daughter trained for the big event.
From Special Needs Anxiety to Pride: A Mother’s Marathon, Pt 2
When our children were young we would tell them that could do anything they wanted to, that even though they may not be the best at something, the important things was that they do their best. Andrea’s taking those words to heart and is willing to give her all to try something extraordinary and I really am proud of her. I’ve never met anyone that knows their body, its capabilities, as well as its limitations as well as she does. She told me she when we first discussed the race that she had gotten her doctor’s okay and was being monitored by him as she trained. She’s always been determined and focused, which I’ve said before is what at times has kept her alive, which gave me confidence in her decision to run.
Trust is a Part of the Training
In the months since when others learn that she’s training for this marathon, they all get the same look of astonishment of their face that says, “Is she crazy or what?” Then they’ll ask me what I think of it, and I can say to them that although I have my concerns as any mother would even if their children were healthy and they undertook a marathon, I’m okay with it because it’s something she wants to do, and I trust her to know her limits.
The Training Is Worth It
I realize now as the days draw very near to the race, that getting to this point in my life where I can let her do what she needs to do in life, without becoming extremely worried, has been a marathon for me. Each day of the ten years of her illness has been a day of training. As she’s become an adult with a chronic illness, I’ve had to be committed to let her live her life, dedicated to support her in her decisions and focused on being her biggest supporter. So on October 9, 2011, when thousands are running that race in Chicago, I will be on the sidelines, not waiting to see her collapse, but anticipating the exhilarating feeling she’s going to experience. Regardless of the outcome of the race we’ve both won just by being there, she the runner and me on the sidelines cheering my heart out with pride.
So How Did the Marathon and Your Battle with Special Needs Anxiety Go?
After the marathon, I emailed Kathy to see how Andrea did in the marathon. Here’s her response:
Andrea decided last Monday not to run. My 90-year-old mother-in-law was recently diagnosed with lung cancer. Andrea only has a certain number of vacation days so she said she wanted to save them in order to come home to see her grandma. I’m sure you can understand that as the mom I had mixed feelings on this. I felt bad because she’d trained so hard and really wanted to run. (She recently told me a marathon was on her ‘bucket list.’) But on the other hand I was relieved that she wouldn’t be running. I don’t believe God allowed my mother-in-law to get lung cancer to stop Andrea from running, but I do believe that He used this once again to show me that He is in control. I could’ve spent the last 6 months worrying and telling Andrea I didn’t think running was a good idea, but instead my support of her actually gave me peace. That’s definitely God.
After reading Kathy’s update, my admiration for Andrea grew. She chose time with her grandmother over crossing something off her bucket list. Race or no race, she’s a champion in my book.
Part One
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