5 More Strategies for Staying Connected with the Real World

5 More Strategies for Staying Connected with the Real World

by | Nov 8, 2018 | Different Dream, How-Tos, Special Needs Parenting

5 More Strategies for Staying Connected with the Real World

Staying connected to the real world can be a challenge for caregivers, whether the loved one being cared for is a new baby, a child with special needs, a disabled spouse, or an elderly parent. I’ve been  primary caregiver in all those relationships and know the effort required to avoid becoming isolated. Along the way, other caregivers have shared their top strategies for staying connected to the real world. Five of those strategies can be found in a previous post, and I’m passing along the final five below.

Strategy #6: Go to the Park

We moved to a new town a few years ago, and I discovered a good way to meet people is to take my young grandson to the park. It’s easy to strike up a conversation with grandparents or parents while pushing a swing or keeping an eye on kids. Our small central Iowa town has several parks with accessible playground equipment. You can research what’s available in your area by calling the local parks department. If your community lacks accessible parks, your phone call proves the need for them and could be a catalyst for change.

Strategy #7: Partner with Teachers

When I taught school, many of my students had special needs: physical disabilities, illnesses like diabetes, behavioral issues, and learning disabilities. I discovered that by partnering with parents of kids with special needs early in the school year, we could teach typical kids about their classmate’s special needs and how to interact so the child was usually embraced and included at school. If I didn’t do so, the typical kids came up with their own explanations about their classmate, and it usually wasn’t good. Rather than go into detail in this post about how parents and teachers can partner, I promise to do it later.

Strategy #8: Join a Real World Support Group

Online support groups are great, and I belong so several. But connecting with the real world requires real world connections rather than virtual ones. Parents of kids with rare conditions may not find a local group dedicated solely to a specific diagnosis, but they can usually find one for parents of kids with any type of special needs. To find a group, check with a social worker or child life specialist at a children’s hospital in your area. Or call a church in your area with a special needs ministry. Many of them sponsor ecumenical support groups for parents. You might also check with the special education coordinator in your school district. Finally, this blog post explains how the mom of a child with a rare medical condition created her own local support group with help from her son’s doctor.

Strategy #9: Take a Walk

Taking a walk with a child with special needs may have some challenges, but compared to the previous two strategies, it’s fairly easy. Even a short walk, perhaps around the block or down to the corner and back, increases your loved one’s visibility. It creates an opportunity for conversation with others. Bringing your dog on the walk makes it more likely someone will will stop to chat.

Strategy #10: Go to Church

Many churches want to support caregiving families. Not just the families who believe in Jesus, but all families. Some of those churches have formal special needs ministries, while others are more informal. Or they may have a care and compassion ministry. To find welcoming churches, call and ask if they have such ministries, either formal or informal. Ask other parents or your child’s teachers if they know of such churches. If you believe in the power of prayer, ask God to guide you to a welcoming church. A church willing to support you and your family can provide a real world connection like none other.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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5 Strategies for Staying Connected to the Real World

5 Strategies for Staying Connected to the Real World

by | Oct 4, 2018 | Different Dream, How-Tos, Special Needs Parenting

5 Strategies for Staying Connected to the Real World

In the last four weeks, our family was hit by a series of health whammies. My husband’s hip replacement surgery was expected, but the others–Mom’s accelerated decline, painful back and neck issues for me, and the virus hitting my daughter and her kids–were not.

I was tempted to lay in bed and binge watch my favorite television show, Parks and Recreation, even after my back and neck recovered. Thanks to my parents, I knew the importance of keeping a family connected to the real world, even while battling health issues. Their involvement in the community, even after multiple sclerosis robbed Dad of his ability to walk when I was a child, is a powerful model of how to stay engaged when it’s easier to stay home and stare at screens all day. Maybe the strategies they taught me will help you and your child with special needs stay connected to the real world, too.

Strategy #1: Sit Outside

Engagement doesn’t get much easier than this. Sit on your porch, in the driveway (my dad’s preferred option), or on the front step. Wave to people walking or driving by. Invite neighbors to come over for a chat.

Strategy #2: Go Shopping

Since shopping has to be done, think of it as an opportunity to connect your child with the outside world. It takes extra work. I remember Mom putting Dad’s wheelchair in the trunk, hauling it out downtown, and putting it back in the trunk when the shopping was done. But I also remember how people said hello and stopped to chat. That wouldn’t have happened without the extra effort required.

Strategy #3: Go to the Library

Take your child to story hour and check out books afterwards. If time is of the essences for your child put items on hold a day or two beforehand so they can be quickly checked out. Either way, library trips show your child how to use books to explore the wider world. And it’s free. What could be better?

Strategy #4: Eat Out

Money was tight at our house, but Dad set aside money from his small civil service pension to eat out once a month. Mom didn’t have to cook, though she did have to haul Dad, his wheelchair, and 3 kids there and back. More important, our family was a visible reminder of Dad’s existence, and his being there prompted people to stop and visit.

Strategy #5: Attend Sports Events

Mom supported our family as an elementary school teacher. Though she must have been tired by the end of the week, but she frequently took us to home games. She drove the car to the edge of the football field and a steady stream of friends stopped to visit as the night progressed. She wheeled him into the gym during basketball season, and he positioned his chair beside the bleachers where the most people passed by. Whatever the score, every game was a win in Dad’s eyes as he connected with the real world.

Begin by putting one of these ways in place and adding others as circumstances allow. Staying connected with the real world requires more effort than clicking a remote or swiping a tablet. But the rewards are more satisfying and create a much richer environment for a child with special needs and the whole family. What more could a parent want?

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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9 Sleep Tips for Parents of Kids with Special Needs

9 Sleep Tips for Parents of Kids with Special Needs

by | Sep 13, 2018 | Different Dream, How-Tos, Special Needs Parenting

9 Sleep Tips for Parents of Kids with Special Needs

These sleep tips for parents of kids with special needs come from 2 similar and challenging  personal experiences. The first was the four years my husband and I put in after our son with complex medical needs was born in 1982. The second was a week of 24/7 grandma duty with our 3-year-old grandson who is not a good sleeper in 2018. These 9 sleep tips for parents will, I hope, keep you from total exhaustion.

Tip #1: Tag Team

Alternate nights for spouses to handle feedings, diaper changes, bathroom breaks, night terrors, and whatever else disturbs sleep. Or have one spouse take the first four hours of the night, with the other spouse taking the last four.

Tip #2: Train Others

You know the good friends and family members who say they want to help out? Offer to train several of them for night duty. If they say yes, train them thoroughly, tidy the guest bedroom, create a schedule, and get a good night’s sleep while they care for your child.

Tip #3: Establish a Routine

Predictable routines make kids feel safe. Therefore, do your best to establish a consistent evening routine for kids with special needs and their typical siblings. The sense of safety will lead to fewer sleep disturbances and sounder sleep for all.

Tip #4: Limit Caffeine

If you can’t cut out caffeine, limit how much you consume in beverages like tea, coffee, and soft drinks. Also limit chocolate. It’s a bummer, but so is lack of sleep.

Tip #5: Use Earplugs

Foam earplugs are cheap and effective. Buy a bunch and use them whenever you are not on night duty. What you can’t hear won’t wake you, and you don’t need to hear everything when someone trustworthy is caring for your child.

Tip #6: Invest in White Noise

Create a white noise play list, purchase a white noise CD, or create it the old-fashioned way by turning on a fan. White noise combined with earplugs will keep night noises far, far from your slumber.

Tip #7: Keep the Bathroom Light Off

When you get up in the night to do your business, leave the bathroom light off so your body won’t start waking up. Trust me, this works.

Tip #9: Turn Off the Screen

A screen’s blue glow messes with the hormones that prepare our bodies for sleep. That’s why sleep experts suggest adults and kids turn off screens 1 to 2 hours before bedtime. What to do during that time instead? Read a book.

Tip #8: Pray

When you are awakened in the night and can’t fall back to sleep, start praying. Ask God to guide your thoughts to what’s good, lovely, excellent, and sleep-inducing. If that doesn’t work, pray for family members, friends, and whoever comes to mind.

What are your best sleep tips? Leave them in the comment box.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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9 Ways Parents of Kids with Special Needs Can Make Time for Themselves

9 Ways Parents of Kids with Special Needs Can Make Time for Themselves

by | Sep 6, 2018 | Different Dream, How-Tos, Special Needs Parenting

9 Ways Parents of Kids with Special Needs Can Make Time for Themselves

Not long ago, I wrapped up an unexpected stint of 24/7 grandma duty with a 3-year-old. Our 10 days together were a grand success, though I felt like I was spinning plates. One plate for the 3-year-old. Another plate for meeting my mother’s caregiving needs. A plate each for my husband, my work obligations, housekeeping, and meals.

As a sanity-saving measure, I tucked away the plates for myself, friends, and hobbies until my grandson’s parents returned. Once he was home again, I compiled 9 Ways Parents of Kids with Special Needs Can Make Time for Themselves

#1: Lower Standards

My need for neatness was not compatible with a 3-year-old in the house. I quickly realized that for both our sakes, my standards had to be lowered. Clean clothes, bathroom, and dishes were priorities. My grandson and I put away toys each night to reinforce what his parents had been working on with him. Everything else received a lick and a promise, and the world did not end.

#2: Lower Expectations

I’m not talking about lowering expectations for a child’s behavior. Those expectations, in line with a child’s developmental abilities, must be reinforced daily. However, parents must lower unrealistic expectations we often put on ourselves. We need to tailor expectations and say no to demands that don’t match our circumstances. For example, say no to leading a Girl Scout Troop and offer to send treats periodically instead. Say no to an hour-a-day Bible study program and choose a fifteen minute daily devotional instead. Say no to a daily work out at a gym and do an exercise video at home instead.

#3: Swap Duties

Arrange to swap a half day of child care duties with a friend. One week you take the kids. The next week your friend takes them. You may have to train your friend in how to care with your child who has special needs, but it’s worth the investment to create time for yourself.

#4: Order Groceries Online and Have Them Delivered

In my opinion, online grocery ordering and delivery is the greatest thing since sliced bread. A regional grocery store chain in our area even offers free delivery for a minimum $100 order. Even with a fee, the savings in gas and time are worth it. Because we all have better things to do than grocery shopping.

#5: Use the Library

Take advantage of library story and activity times. Call the local library’s children’s director, explain your child’s situation, and ask which program is the best fit. While your child participates, choose books and/or audiobooks for your child and for you. Or run to the coffee shop for a latte. Or some other pampering. You and your sanity are worth it.

#6: Squirrel Away Fun

When you see things at back-to-school sales or on clearance—like sidewalk chalk, coloring books, bubbles, craft supplies, stickers, or whatever will occupy your child for a long stretch—stock up and squirrel them away. Pull stuff out on rainy days or when you need a break, and you’ll both be happy.

#7: Allow for Quality Screen Time

Too much screen time is bad. But, carefully selected screen time can be good. Read what the experts say about how much daily screen time is appropriate for your child’s age and/or development. Allow your child that amount of time to engage in quality learning games, television shows, and online activities each day. Then, use the freed up time to do something you want to get done.

#8: Limit Your Own Screen Time

Limiting screen time accomplishes two important things. First, it provides a model for children as you teach them to limit their screen time. Second, you will have more time for what matters—like your spouse, your kids, friends, hobbies, and yourself—because you won’t be wasting time on things that don’t.

#9: Be Flexible

Plans change in the blink of an eye. Doctor’s appointments get rescheduled. Kids get sick. Kids with special needs get really sick. Weather hassles make travel impossible. Caregivers don’t show up. Family members die. Babies arrive early. A crisis arises, and you want to help. The best way to handle changed plans is to be as flexible as possible under the circumstances—and doing so is way easier once items #1 through #8 on this list are implemented.

I may not have a child with special needs at home any more. But I do have four young grandchildren, and I want to be ready to pitch in at a moment’s notice. I’ve set a goal to put one thing from the list in place per week, so my plates are prepared the next time 24/7 grandma duty rolls around. Want to join me?

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.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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9 Tips for Surviving a Tornado in a Wheelchair

9 Tips for Surviving a Tornado in a Wheelchair

by | Jul 19, 2018 | Different Dream, How-Tos, Special Needs Parenting

9 Tips for Surviving a Tornado in a Wheelchair

Tornado season scared me to death when I was a kid. First, because of the scene in The Wizard of Oz when the tornado bears down on Dorothy as she pounds on the door of the storm cellar to no avail. Young as I was, I realized that though Dorothy might have survived a twister in movie world Kansas, in the real world she would have been toast. Second, because of what occurred whenever the tornado sirens sounded in our town. Mom would call her brother-in-law who lived about 8 blocks away. He would drive over, help Mom get Dad and his wheelchair into the basement, and then go back to his house to wait out the storm with his family. Young as I was, I realized that if a tornado had touched down between our house and his, the grown ups I loved most in the world would also have been toast.

With tornado season in full swing where I live, I wanted to learn how tornado preparedness, especially for people in wheelchairs, has advanced over the years. Research showed that some improvements, though perhaps not enough, have been made. Based on what I learned, here are 9 tips–some old and some new–for surviving a tornado in a wheelchair.

  1. Create a plan. Before tornado season, decide what to do if a tornado hits. What do you need to have in place before tornado season? Where will you go if a tornado warning sounds? Do you need someone to assist you, and if so, who will that be? Practice the plan with all the members of the family. If some of your family members are children or the person in the wheelchair is a child, make the practice into a game to prevent fears from arising.
  2. Develop a support network. Enlist the support of family members, friends, and neighbors willing to take the person in a wheelchair to a safe place.
  3. Register your family. Let the local fire department, emergency management, team and volunteer centers know your family includes someone in a wheelchair.
  4. Post emergency medical information on the refrigerator. This should include including a list of the equipment the family member in the wheelchair needs, medication dosages, and emergency contact numbers.
  5. Put together an emergency kit. The kit could consist of batteries (including an extra wheelchair battery), medications, emergency medical information, water, food supplies for special dietary needs, a manual wheelchair for back up, gloves for operating it, and a weather radio.
  6. Call the power company. This is essential if your family member’s wheelchair is battery-operated or if other equipment depends on power, such as oxygen tanks or a ventilator. Some power companies maintain maps and lists of locations of customers who are power-dependent in case of an emergency, They also offer advice about setting up alternate power sources in case of an emergency.
  7. Identify or build a safe room. A safe room is the best place for surviving a tornado in a wheelchair because it’s easier to access than a basement. Families building new homes should consider including a safe room. Those in existing homes should consider retrofitting an existing space as a safe room. The next best option is to designate an interior room or closet without windows as a safe space.
  8. Keep a pillow or mattress handy. A pillow can be placed lightly over a small child in a wheelchair to protect against flying glass or heavy debris. A mattress can serve the same purpose in a safe room or large closet and other family members can crawl under it, too.
  9. Clear a path. Keep the pathway to the safe room clear of furniture and other obstacles so it can be reached quickly and easily.

Disaster planning guides for people with a wide variety of special needs and disabilities can be accessed through the article Tornadoes and People with Disabilities located at the Disabled World website.

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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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The Importance of Community for Parents of Kids with Complex Medical Needs, Pt. 2

The Importance of Community for Parents of Kids with Complex Medical Needs, Pt. 2

by | Jul 18, 2018 | Different Dream, How-Tos, Special Needs Parenting

The Importance of Community for Parents of Kids with Complex Medical Needs, Pt. 2

Jill Seaney is rounding out her series on the importance of community for parents of kids with complex medical needs, which she began last spring, with information about how to find the special needs community best able to support and encourage you.

3 Ways to Build a Community for Parents of Kids with Complex Medical Needs

One of the most important things I can recommend to parents starting out with a child with special needs is to build a strong support network or community. In Part 1 of The Importance of Community for Parents of Kids with Complex Medical Needs, I talked about how no one can understand and support you like another parent of a child with a similar diagnosis. But during this emotionally and physically difficult time, how do you find these people and build your own community?

There are many ways you can find other parents. We are so blessed to live in a time when we can connect with people all over the world with a few quick clicks. There are probably more ways to find your people other than what is in this post, but these examples are how I found my community.

Facebook

Facebook is the quickest and easiest way to find other parents as there are groups for just about everything. Try a couple different searches in Facebook, read through the groups’ descriptions, and if it looks like the right fit, click on the “join” button. Typically there is one or two moderators who will approve your request. Some groups ask a couple questions first to make sure it makes sense for you to be added and that you aren’t a spammer. Most of these groups are private so only the people in the groups can read personal questions or information about a child and to build a mutual level of trust. I have found many new friends in Facebook groups and don’t know how I would have made it through the first year of my son’s life without these support groups.

Blogs

I kept a very detailed blog about my pregnancy, my son’s birth story and diagnosis, his  initial surgery and NICU stay, and subsequent surgeries and hospitalizations. The blog is public and searchable through Google key word searches. Several moms have reached out to me because they found my blog while searching topics related to their children. I have done keyword searches on different blogging sites and met some really amazing moms this way as well.

Local Communities

Although I met a lot of moms online, I still wished I knew someone locally. I searched online for local support groups and found a local special needs parents’ group. But none of the local moms had a child with the same medical complexities who was close in age to my child. I decided to ask my son’s surgeon and some of his specialists. I knew they wouldn’t give me other families’ names and contact information because of confidentiality. But they agreed to give my name and phone number out since I had given permission. My first text from a mom with a NICU baby arrived a year ago. We have become friends, share our ups and downs, and support each other. There is a special camaraderie we share with each other.

As I was preparing to be a new mom, I never imagined the challenges and struggles I have faced. It’s a world that I was shoved into without a manual about how to feel, react, or live day to day. In addition to my faith and my husband, the community of mom friends I have built since our son’s birth has gotten me through some difficult days. Our children unite us when one mom is struggling. We lift each other up and remind each other that its okay to be upset and to cry, but we also push each other to keep going. No matter how difficult this journey is, our community supports us. Therefore, I challenge parents of children with medical complexities or special needs to reach out to other parents and build their own community.

Part 1 

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Jill lives in Tucson, AZ with her husband Jeff and their son Blake. She worked in Human Resources up until 2014 when her son was born with VACTERL Syndrome which included EA/TEF. Jill resigned to care for her son full time. Later he was also diagnosed with a Congenital Diaphragmatic Hernia and Eosinophilic Esophagitis. Jill’s personal blog (Beloved Blake) documents his surgeries and health challenges, their family struggles, and Blake’s milestones. Jill loves writing and teaching others about what it’s like raising a child with complex medical needs. She wants to be a blessing to other parents just starting on this journey.

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