A Wonderful Week

It was a wonderful week, visiting with Jolene Philo and discussing her new book, Different Dream Parenting.

I want to thank Jolene for stopping by and sharing some of her time with us. She has had plenty of experience raising a special needs child. And she was gracious enough to stop by and share her knowledge with all of us.

Thank you to those of you who stopped by and left a comment. 

And...

Congratulations to Kathleen Maher for winning a copy of Jolene's new book. 

It's a busy season, and I apologize beforehand for the brevity of posts. I am working on ideas for articles for the new year. 

If you have any suggestions for topics you'd like to read about, please drop me a line and let me know. I am always looking for new angles to cover.

I will share our Christmas news and how our season of goodies, candy, and abundance of food at this time of year worked out for us.

Sawyer is doing great! He's a tough little guy. 

I am sure Santa has taken notice :D

Merry Christmas to one and all!

A Different Dream For Your Child

I am honored to have as my guest today, Author Jolene Philo. Jolene is not only an author and mega-blogger, but also a mom with more than twenty-five years of experience raising a special needs child. She understands the confusion and feelings of loneliness at the time of diagnosis - and beyond.

With the release of her new book, Different Dream Parenting, many parents will now have a resource to turn to when questions arise concerning many things: hospital stays, dealing with schools, and how to involve siblings so they won't feel left out. 

She also adds the necessary inspirational element that stressed out parents need. She provides devotionals with  scripture to give parents the strength to lift their heads above the rising tide waters.

Jolene, I'm glad you stopped by today. Tell us about yourself and your journey of hope.

When our beautiful newborn boy was transferred to a regional hospital, my husband and I felt lost at sea. A few hours later, we learned that our baby required immediate surgery at a university hospital 750 miles away. Without it, he would die. That news threw us overboard. We longed for someone who could come alongside and pull us out of the water. A book to chart a map through unfamiliar waters and assure us of God’s presence.

But our son was born in 1982 when pediatric medicine was a relatively new field. Families like ours were hard to find. Parenting books hadn’t been written. The internet didn’t exist. Over the next twenty years, even after the surgeries and medical procedures that corrected our son’s condition were over, my search for parenting resources yielded scant results. Eventually, I sensed God nudging me to come alongside young parents lost at sea like we had been, to create a map they could follow.

Different Dream Parenting: A Practical Guide to Raising a Child with Special Needs is that map. It’s a map for parents of kids living with medical special needs as well as conditions like Down Syndrome, juvenile diabetes, developmental delays, and autism, and those facing a terminal diagnosis. It guides parents by providing tools and resources they need to become effective advocates for their kids.

The book features interviews, advice, and resources from more than fifty families and two dozen professionals. With their help, the book addresses the situations parents face every day. Things I wish someone had told me, like:

• Asking questions after diagnosis.
• Dealing with insurance companies.
• Preparing a child for a hospital stay.
• Accessing financial resources and government monies.
• Accessing special education services.
• Determining optimum level of care.
• Mobilizing volunteers at home.
• Supporting the sibs.
• Preparing a child for death.
• Planning a funeral.
• Participating in community and church events.
• Creating a special needs trust for adult children with special needs.

In addition to practical advice, Different Dream Parenting tackles spiritual questions families are often afraid to ask. Questions about:

• God’s sovereignty
• Parental guilt
• Setting and maintaining spiritual priorities
• Grieving for children living with special needs
• Grieving the death of a child
• Passing faith on to children with special needs

Thirty day prayer guides in the appendices are for parents too exhausted to form their own prayers.

I remember what it’s like to be lost at sea, thrown overboard by an unexpected diagnosis, and drowning under a flood of caregiving demands. My goal is to put Different Dream Parenting into the hands of floundering parents so they have a map and know they’re not alone. To order the book, visit www.DifferentDream.com and click on the “buy the book” tab. 

Thanks, Leann, for this opportunity to guest blog at Journey of Hope and tell people about Different Dream Parenting. 

Thank you, Jolene, for stopping by. I think your book is a must-have field guide for the unchartered waters of parenting a special needs child. I wish I'd had it in April when my seven-year-old son was diagnosed with juvenile diabetes. So many time saving tips and helpful resources are now available at my fingertips.

Jolene is giving away a copy of her book today. All you have to do to be entered is leave a comment and include your email address. 

New Book Deals with the Issue of Parenting a Child with Special Needs

I am thrilled to announce that author and super-blogger, Jolene Philo, will soon be a guest on my blog to discuss her newly released book, Different Dream Parenting. Jolene's first child was diagnosed with a life-threatening birth defect only a few hours after birth. He was immediately flown to the University of Nebraska in Omaha for surgery. In her book, she shares her story, as well as those of others who have faced the life-altering whirlwind that takes place in the lives of families who discover their child has a disease or disorder. 

About Different Dream Parenting

If you are the parent of a child with special needs, you are aware of the daily challenges. There are special tasks in caring for your child and other unexpected circumstances that can arise. It is a labor of love with life-long rewards: the smiles, the hugs, and the milestones your child reaches.

Whether you are a caregiving veteran or new to the experience, as I am, Jolene's new book has some welcomed help to offer.

What Issues Are Addressed?

Jolene takes us from diagnosis and coping to preserving the family.  She shares helpful tips for the stressed out parent as well as advice for keeping your other children from feeling neglected. Jolene also addresses the spiritual needs of parents and how to work well needed devotional time into a hectic routine.

I was delighted to find many helpful resources and links for parents of children with various needs. Jolene has done her research and she shares them in Different Dream Parenting so they are readily available. I particularly appreciated the tips for helping deal with stress, as we tend to neglect our own needs while caring for a special-needs child. 

Different Dream Parenting has become my go-to handbook for valuable information. 

How can you be prepared for stays at the hospital? How do you prepare your child for life-changing news? Who can you turn to for help in caring for your child? How do you keep your child occupied during a long hospital stay? Finally, is it possible to keep your spirit nourished when you are too tired to think? Jolene has provided wonderful daily devotionals to keep your spiritual engine running when you don't feel you have the strength to continue.

Jolene does a marvelous job covering topics I hadn't even thought about while I was going through the transition period when my son was first diagnosed with juvenile diabetes. I highly recommend this book to all parents and caregivers of children with special needs. It answers questions you haven't asked yet.

I hope you'll join us at the beginning of December when Jolene will be a guest on my blog to discuss her new book. We will also be giving away copies of Different Dream Parenting to randomly selected commenters. You can purchase a copy now at http://www.dhp.org/Products/UB913.aspx to take advantage of a 10% discount off the retail price. Then, join in the discussion when Jolene stops by for a visit in December, ask questions, or share your story and useful tips.

I know I can't wait to glean from her experience and knowledge on many topics. How about you?

Halloween Treats can be Tricky

*photo courtesy of masterworks.wordpress.com*

This was our first Halloween since "the diagnosis."

 All the chocolates, licorice, and teeth-pulling treats are  magnified during this time of year.

So how should we handle it?

I spoke with a young lady yesterday who has been diabetic since she was five-years old. She shared with me that when she was a kid, there was no trick-or-treating for her, and if she did, the candy had to be given sparingly. She took note that her friends didn't have to live like that - watching how much candy they ate and taking shots - so, why did she?

It must feel like some sort of punishment to a little kid, being left out of holiday festivities. Think of all the food-centered holidays: Thanksgiving, Christmas, Valentine's Day, Fourth-of-July, Labor Day, Easter, and the dentist dreaded Halloween.

It's definitely calorie-free to dress up in costumes, and certainly healthy to walk around the neighborhood on a brisk evening collecting goodies. It's the eating of the hard-earned treats that becomes, well, tricky.

*photo courtesy of myfrugaladventures.com*

I figure that everything in moderation is okay. Well, almost everything. Rather than going door to door this year and having to moderate all those unnecessary sweets, we took Sawyer to our local mall for trick-or-treat. They were sponsoring a two hour event for kids, which included a costume contest and trick-or-treating at the stores. This gave Sawyer the experience without the excess. Later that night, we had a candy hunt for him, sort of like an Easter egg hunt. He had lots of fun with that. We also let him dress up and go from door to door within our home, knocking at each one and saying "Trick or Treat?" as each character opened their door.We treated him with some goodies and he didn't pull any tricks.  I smiled when he squealed with delight and laughter as he said, "This is fun!" 

The candy is put out of reach and we allow him a piece or two with his meal or as a snack. The carbs are counted and he is given insulin for the treats. 

 We will make it through and recover in time for the one month Thanksgiving/Christmas gluttony that occurs each year. Yikes!

A little candy is okay. Moderation is key. This isn't a lifestyle that just diabetics should live by. 

After all, we all should moderate our intake of sweets. 

I'm sorry, Sawyer, but you just can't sit and eat that entire bag of candy in one or two sittings. Nobody should. So, I hope he learns that this isn't just a diabetic thing, but a healthy lifestyle thing for everyone. 

I wouldn't want him to feel left out.

His good attitude about all of this tells me he doesn't feel like he's missing out on a thing. 

Dogs for Diabetics

It's amazing that dogs can be trained to help people with disabilities function in society. They have been helping the blind get around for decades. A couple of years ago, I learned that dogs have also been trained to help diabetics.

Hypoglycemia is a very serious condition that can occur in people with diabetes. When their blood sugar drops very low and often suddenly, a life threatening situation occurs The person can lose consciousness or go into a seizure. This can occur rapidly. Hypoglycemia can also occur while the person sleeps, and he/she may not awaken in time to get help.

Dogs trained for diabetics can smell the chemical reaction that occurs in a person experiencing hypoglycemia. The dog can then alert the person in time to seek treatment.

It's a wonderful advance in the treatment of diabetes. There are many people who live alone and with the keen nose of the trained dog, they can get help before they are unable to do so.

It always comes back to the apple

Steve Jobs has often been a man of controversy. Heated arguments have been fueled by his name, his methods, and his products.

I want to leave that behind and focus on Steve Jobs - the innovator. 

His creativity, never say never attitude, and his strong penchant  for cutting-edge technology made my life better.

The world lost a trailblazer last week when Steve Jobs was promoted to a higher position than CEO and co-founder of Apple. Who will fill his shoes?

The inventions sparked by Job's imagination have made it easier for me to function with my son's diabetes. Having an iPhone and iPod, I can download apps that assist in my son's care. 

How so?

There's the Google and Maps app I use to plan out our route for visits to the endocrinologist. If you remember my post about our first trip to the endocrinologist, you remember why this is a necessary tool. Sure, paper maps still exist, but does it point out one way streets or detours for construction? Does a map give you an ETA? No.  How about a compass app. when you get turned around? Then, there's the weather app that lets me know what type of weather to expect so I can time my departure appropriately. 

Additionally, I have apps that give me nutrition information. This is a handy tool when we are out to eat and need to know the carbs so we can calculate Sawyer's insulin dose. These apps include GoMeals, Lose It!, and Restaurants. These apps give me access to the most current information available. What's more, they were free. 

Also, there are many free games that keep my son entertained while waiting at the doctor's office or during the long 2 hour trip to his doctor appointment. I recall when he had to sit through his sister's two hour graduation ceremony. Sawyer also has been diagnosed with ADHD. The games on the iPod kept him entertained the entire time. This is a little bit of heaven for a stressed out, tired mom. Angry Birds, Pocket God, and Sonic have been wonderful entertainment.

There have been times when I needed information about juvenile diabetes while away from home. All I had to do was open my Safari browser and the information was at hand.

These are just the applications that I am aware of.  I'm sure there are many more. No longer do I feel I unprepared in unexpected situations. I don't have to pass on an invitation because I'm not sure how I will figure out Sawyer's carbs. Oh, by the way, there is also a calculator app that I use to figure out Sawyer's carb ratio and insulin dose. 

In addition, there is a notepad app where I can make notes of Sawyer's activity, food intake, and insulin dosages, while I am away from home. I can later transcribe this information into his journal.

Access to the information I need is at my fingertips. I have Steve Jobs to thank for this freedom. 

Thank you, Steve, for sharing your ideas with the world. 

Do you have a favorite app that has made raising a special needs child easier? If so, please share. I'd love to hear about it.

*(Blog Written on my MacBook Pro)*

First Road Trip Away From Sawyer

Photo courtesy of twogirlstakeonlove.net

We had to go where Sawyer wouldn't be able to accompany us; a college visit with our older daughter.

A tour on campus would be lengthy, detailed, and our total attention required.

Sawyer would have to stay home.

There was one little problem; Sawyer had never been under the care of anyone other than my husband or me.

We deal with the obstacle of not having support from family, friends, or neighbors. 

In short, we had our son in our later years, after parents and grandparents had passed on. My siblings and cousins, as well as my husband's, live out of the area. In addition, we live rurally. There are no close neighbors to call on for assistance. 

I won't lie and say it's an easy thing to raise a child with several special needs. It has been a challenge.

I honestly did not want to leave Sawyer and make the two hour trip away from home. In my mind, that was too far away from him if he needed me. 

Fortunately, Sawyer does have an older sister. She is 26 and doesn't live at home anymore, but in an absolute emergency, I will call on her. 

I had given her some diabetic education in treating hypoglycemia and checking Sawyer's blood glucose levels. She hadn't yet been taught how to calculate carb ratios, insulin dosages, and administration of insulin injections.

We had one thing going for us; Sawyer could administer his own shots.

I communicated with another mother of a diabetic, and she shared that she had her child's babysitter call her with the amount of carbs her child would be eating at a meal, along with his blood glucose number. She would calculate the insulin dosage so that the child care provider would know how much insulin to administer. In fact, her son knew how to give his own injections, so it was pretty much a no-fault system. 

This gave me some peace of mind on my first day away. 

I had Sawyer's snacks and meals prepared in advance. His sister then had only to call me with the blood glucose number and carbs so I could do the math and Sawyer could administer his shot. 

His sister is a smart cookie, so I showed her how to calculate the numbers in the event I couldn't be reached. She did call, however, to be certain of the dose. 

It's a delicate thing, dosing insulin. Just one unit can make a huge difference in blood sugar levels. One unit too much, and hypoglycemia may occur. One unit too little, and a child may become ill due to hyperglycemia.

*Photo courtesy of feastoffun.com*

The day came when we had to leave Sawyer. We would be gone the entire day and guess what?

It all worked out.

It's a hard thing to give up control and trust that your child will be in good hands. Add to that, a disability, and the nerves try to get the best of you.

Being a parent is a huge responsibility. So much so, I think there should be parenting classes before someone has children. 

Then parenting students would learn about the awesome responsibility that comes with raising a child. Unlike a puppy, you can't return it to the pound if you decide it's just not for you. 

Being a parent means you will no longer sleep soundly through the night. From diaper changes and midnight feedings to staying up past midnight wondering why your child hasn't come home yet. 

The investment is time and the return is love. 

There will be times when taking your child with you just isn't an option. It is at that time you will need to have someone in your corner you can trust. Preparation will alleviate some of the stress. If your child is old enough to participate in their care, allow them to do what they can. It will empower them and assure you.

*Photo courtesy of smcsundayschool.com*

We can't be with them all the time and the first trip away can be one of apprehension. It was for me. I dreaded it. Yet, it all worked out fine. 

It is important, though, to have someone you can call on in times of need. Have a trained family member, friend, or neighbor on deck. 

And take that first trip away with confidence.

First Day of School

photo courtesy of stjosephpost.com

The first day of school is an exciting time for children.  A new school year and a fresh start: new teacher, friends, a step up the grade ladder.
The first day can also bring with it anticipation, anxiety, and stress.
What awaits behind the closed door of the new classroom? What will the teacher be like: strict, like to play games, or will she/he give lots of homework?
Into the unknown they go. Although, not all things change.
Chances are, if they haven't moved to a different school district or advanced into the middle/high school, some of their friends will be in their new class, the principal will be the same as the year before, and the rules are the same.

The new school year brings with it adventures in learning and growth. Challenges await and students will be stretched beyond what they've done before.

As I sent Sawyer off on the bus, I wondered what new experiences awaited him this coming year. What subjects will excite him and which will he dread. Will he have a chance to express his creativity in art or music class, will he be the fastest runner or farthest jumper in gym class, or will he release his inner Shakespeare on stage or in writing?

Sawyer was definitely excited as he headed off to school this first day. He hadn't a care in the world, and I was glad of that.

I made a trip to the school nurse with Sawyer's supplies and snacks. We were prepared ahead of time, so there wasn't any anxiety, no last minute 'Oh No! I forgot to get that' moments. Our preparedness paid off.

And so begins another year. Where did summer go? Its visit was shorter than my in-laws.

Have a great year, Sawyer!

I know you'll be great!

Preparing for Back to School

The nights are getting cooler and the air is crisp. Merchants are displaying Halloween items; apples are bountiful at the fruit stand. Autumn is approaching. This season change reminds us back-to-school time is quickly approaching.

*twinpossible.com*

Going back-to-school is an exciting time: crisp new notebooks to fill, long pencils to wear down to tiny nubs, and sharp crayons with which to create the next great masterpiece. School supply lists coming home from students' teachers are growing longer these days with things like highlighters, dry erase markers, tissues, washable markers, folders, glue sticks, scissors, a back pack, and sometimes a lunch box. 

A trip to Wal-Mart and everything on the list is checked off.

The school has mailed the bus list and we make a note of our child's bus number. 

We have everything right?

There is a lot of preparation that goes into getting ready for school, for students and teachers alike.

As well as the traditional school supplies, a parent of a child with juvenile diabetes must ready the supplies their child will need away from home.

It's important to be prepared for any situation that may arise while the child is at school. 

While some parents may live in close proximity to their child's school, many do not. Some parents work out of town and could not attend to their child's needs quickly. At times when every minute counts, have the necessities on hand for your child. Supplies are generally locked in the nurse's office and she will soon become your greatest ally and advocate for your child. Keep in close contact with her and let her know what a great job she is doing.

I would also suggest the items be delivered directly to the school nurse, rather than sent in a back-pack. For a child to carry lancets and needles is an invitation for a problem. Especially with curious young children riding the school bus.

I've compiled a checklist of items that should be included in the child's kit.

- Glucose meter (Generally, the pediatric endocrinologist will provide an extra meter for the school at no charge)

-Test strips (enough to last at least a month, to save on frequent trips to the school and the risk of running out.)

-Insulin (If using a pen, they need to be replaced every 30 days. If possible, send enough for a couple of months. The nurse's office is usually equipped with a mini fridge for storage of medications.)

-Needles (if using a pen.) Syringes (if vials are used.)

-Lancets (A box should last quite a while.)

- Ketone testing strips

-Glucose Tablets (for low blood sugar episodes)

-A Glucagon pen (This is used for extreme episodes of hypoglycemia, which can result in unconsciousness or seizures.)

-Snacks (Especially important for gym days and active days outside on the playground. The nurse will keep your child's supply in her office cabinet with your child's name on each item.)

Good snacks include cheese sticks, yogurt, juice boxes, crackers, and granola bars. 

If possible, stock up on your child's supplies regularly, or as often as your insurance will allow, so you are able to send an ample supply to your child's school. This saves on extra trips later. Many pediatric endocrinologists understand the need for more supplies, and will prescribe a sufficient amount. I try to fill Sawyer's prescriptions every 30 days so I will not be shorted on our home supply.

Our school nurse keeps a log of Sawyer's blood sugar numbers and carb intake. She sends a copy home so I can keep track in our log book at home. This is helpful for when calling in numbers to the diabetic nurse at the endocrinologist's office. She also keeps track of his ketones when his numbers are high. If your nurse doesn't do this, perhaps she will if you ask. It's very important to keep track of the numbers for better blood sugar control; which prevents complications.

A little planning will make the back-to-school transition easier on you, your child, and your school nurse. 

Remember: it is important that your child feels secure and safe at school, as well as at home. Furthermore, it makes it easier on the school nurse if she has all your child's supplies at hand. Your child is probably not the only diabetic she attends to each day. 


If your child's treatment plan has changed over the summer, be sure to get a letter from your doctor to send to the school nurse. Our nurse cannot make any changes without a doctor's note. She cannot go based on what I tell her.

One last important thing to remember to send along with your child.

Lots of hugs.

*backseatmummy.com

They're doing a great job, and so are you. 

Dining Out With a Diabetic

-photo courtesy achildgrows.com

It's about as glamorous as it sounds. 

Dining out was frustrating, to say the least. I thought we'd never do it again. 

To start off, I also have diabetes. The doctor has me on insulin, along with other medication. It was a hassle anytime I ate out at a restaurant and especially during lunch at college. I was too embarrassed to break out with my glucose meter and check my blood sugar at the table. I also didn't think the bathroom was a very sanitary place to check it. Therefore, I checked it while I was in the car prior to going in to the restaurant. At a restaurant, I would order my meal and when it arrived, make a trip to the restroom where I would give myself my insulin.  During lunch at school, I ate in my car; heat on in the winter so I wouldn't turn into a popsicle, and air conditioning when it was 80 degrees.

Sound fun? 


Double Trouble

After Sawyer was diagnosed, I was overwhelmed. How would this work? 

I am not embarrassed about checking his sugar and administering his insulin. What's really difficult is counting his carbohydrates. Some restaurants offer a nutrition list which makes it helpful in counting his carbs. This is important since Sawyer's dosage is dependent on what he eats. 

Carbs ratio + blood glucose = insulin units

So, you can see it's very important to know this information. The endocrinologist gave us a typed handout which covers some general foods, but not restaurants and other specialty foods. With two diabetics dining out, honestly, it's simply not fun. All I can do is make it as simple as possible by searching out and utilizing tools to ease the stress.

Sidebar Note

A carb is a carb. It does not matter the source of the carb.

That's not to say that different foods don't effect each person

differently, because they do. The way the nutritionist explained

it to me is, that whether it's a brownie or a slice of whole wheat      

bread, they are both carbs. They are processed by the body in the same way. It's important to note that diabetics

can eat what they want, in moderation, as long as it is counted

into their carb ratio. If you see a diabetic eating a cookie, 

brownie, or slice of cake, do not pass judgement. It might

be that they have allotted for that treat. Maybe they exercised an extra half hour so they could have dessert at dinner. So long as it isn't a consistent habit, it's fine.
Pasta, potatoes, and bread are on equal ground with treats.

This is what helped me.

First, I have a copy of The Calorie King in my son's kit. We take it with us everywhere we go. I have a spare copy in my car. 

Yet, not all restaurants are listed. For example, Friendly's is not in the book. When we dined there recently, I asked for a nutrition information sheet. What they provided only listed calories. That wasn't the information I needed to calculate Sawyer's dosage. 

I was able to access their Web site via my mobile phone, but that wasn't easily navigated. 

Then I found a wonderful and FREE app. for my iPhone called 'GoMeals'. This application allows you to keep track of your meals. It lists many supermarket foods as well as restaurants; including Friendly's. I was able to search the list and find the foods Sawyer was eating and count his carbs. I highly recommend this app for anyone who has access to an iPhone, iPod Touch, or iPad. I am unsure if this app is available for the Blackberry, but it would be well worth looking in to. 

Drawing

We have reached a milestone. Since starting

my blog in May, we have had 1,000 views. 

In celebration of this milestone,

I am having a drawing for one lucky commenter. 

For each person who leaves a comment, your name will

go into a drawing. Subscribe to my blog, and you will get 

a second entry.  Please leave your email in your comment

so I may contact you if  you are the lucky winner. 
Make sure to let me
know that you joined my blog. 

What is this fabulous prize you ask?

A copy of The Calorie King

 And, a cup of coffee on me at Starbucks.

Remember, leave your email in your comment and subscribe to my blog. It's easy and it's free.