Father’s Day, Puberty and Special Needs

Father’s Day, Puberty and Special Needs

by | Jun 11, 2015 | Different Dream, Holidays, Special Needs Parenting

Father’s Day, Puberty and Special Needs

The note guest blogger Kimberly Drew sent with this post said she had written about puberty and special needs. She is undeniably right, but reading her words, it became clear that the post is also a wonderful Father’s Day tribute to her husband as he defines his role in caring for their daughter as she goes through puberty.

Father’s Day, Puberty, and Special Needs

We celebrated Abbey’s thirteenth birthday in April, and I can no longer ignore the fact that I have a teenager. I cannot believe how fast these years have gone. Many of my friends are still announcing pregnancies and posting baby photos, and here I am with this teenage daughter. For most people, that phrase comes with a little fear and trepidation. For us it has definitely brought some unwelcome changes. Being a woman myself makes Abbey’s changing body not that big of a deal for me. But, my husband has had a really difficult time with this.

Can you blame him?

Taking care of the physical needs of a cute little four-year-old with ringlets is nothing at all like putting a bra on your teenage daughter. Some people have assumed that from now on I alone will be caring for her physical needs. This is ridiculous. Male doctors, nurses, and therapists all over the world care for adult patients of the opposite sex.

Trust me when I say that no one on this earth has more compassion for our daughter than her own two parents.

My husband doesn’t love changing diapers or giving baths, but we are in this for the long haul together. You should not assume that just because he is a male, it’s not appropriate for him to care for our daughter. No matter how her body changes, she will always be our little girl…and I need his help.

I can’t do this alone!

We recently read an article written by the father of an adult disabled daughter. Ryan connected with that article and began to understand that while it’s completely normal to be uncomfortable at first, a child’s physical needs can become just medical care. You can look at it from a medical perspective and get over the uncomfortable nature of a changing body. Before we know it, Abbey will become an adult. We plan on having her live with us for as long as possible.

Abbey will need a team of the two of us to continue to take care of her physical needs.

When we graduated from Taylor University, we received our diploma and a towel that symbolized the calling to go out with the heart of Jesus to serve other people. My husband has his towel framed along with his diploma. Here we are fifteen years after graduation, and I can tell you that for the last thirteen years my husband has been serving our daughter. We have come to a crossroad where a lot of men might want to walk away and refuse to help.

Not my Ryan.

With some encouragement, and the humble heart of a man who wants to serve like Jesus, he literally rolls up his sleeves to change a diaper, take a turn giving Abbey a bath, or get her dressed. She is so blessed to have a dad like that.

How Has Your Family Handled Puberty and Special Needs?

Is puberty and special needs creating changes at your house? How are you handling or did you handle caring for your child during the physical transition to adulthood? Leave your comments!

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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Kimberly grew up and went to college in the small town of Upland, IN. She graduated from Taylor University with a degree in Elementary Education in 2002. While at TU, she married her college sweetheart and so began their adventure! Ryan and Kimberly have four amazing kids on earth (Abigail, Jayden, Ellie, and Cooper), and a baby boy waiting for them in heaven. Their daughter Abigail (Abbey) has multiple disabilities including cerebral palsy, a seizure disorder, hearing loss, microcephaly, and oral dysphagia. She is the inspiration behind Kimberly’s  desire to write. In addition to being a stay at home mom, Kimberly has been serving alongside her husband in full time youth ministry for almost fourteen years. She enjoys working with the senior high girls, scrapbooking, reading, and music. You can visit Kimberly at her website, Promises and Perspective.

Author Jolene Philo

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A Father’s Day Tribute to a Father’s Eyes

A Father’s Day Tribute to a Father’s Eyes

by | Jun 10, 2015 | Different Dream, Holidays, Special Needs Parenting

A Father’s Day Tribute to a Father’s Eyes

Father’s Day will be here soon. So Different Dream is taking a break from PTSD Awareness Month for a few days to focus on the roles fathers play in the lives of children with special needs. Guest blogger Kathy Guzzo begins the line up with this Father’s Day post about what she saw in the eyes of the fathers she observed at a special needs prom.

Their Fathers’ Eyes

Recently I had the privilege of being part of the paparazzi crowd for a prom given for special needs students and young adults. The anticipation and excitement in the hallway with more than 100 people was contagious as we awaited the arrival of guests by limousines. I joined in the cheers, whistles, and applause as they walked the red carpet.

I was there to take photos of the special guests. However to truly capture the full emotions of the evening, I wished I could have photographed individuals in the crowd, especially as their children were escorted onto the red carpet. I didn’t know any of the families or guests, but if could have watched both the crowd and the guests I’m sure I would’ve been able to identify whose children belonged to whom. Physical traits didn’t give it away. The love expressed in the eyes of parents, grandparents, siblings, and friends did. What touched me the most though were the fathers’ eyes.

What I Saw in their Fathers’ Eyes

Fathers are often given a bad rap as the stereotypical guys who sit back, write a few checks, relax and observe events like graduations, weddings, and proms without really participating. Yet that evening fathers clapped, cheered, took photos, and smiled from ear to ear. Even the fathers who weren’t as animated said so much with their eyes. They were celebrating because their children were treated with respect, as people who matter, as beautiful the way God made them, not looked down upon for their differences and disabilities.

Their fathers’ eyes sparkled with joy, beamed with pride, overflowed with an abundance of love, and a few glistened with tears. The dads weren’t seeing people with physical or mental disabilities. They saw their precious daughters looking like princesses walking the red carpet. Or their handsome sons, their buddies with their heads held high, distinguished in their tuxedos. They saw the children they had dreamed of loving, supporting, and protecting. The unconditional love of the fathers was inspiring.

What I Saw in their Fathers’ Hearts

These dads may have struggled with the changes in their roles when told of their children’s special needs. They’ve probably asked a lot of what if, how, and why questions. They may have been overwhelmed with the responsibility of meeting their needs. Yet their commitment, love, and devotion to their children are evident in their eyes.

Fathers aren’t usually asked how they feel or how how special needs challenges are affecting them. But on that special evening, the pride, gentleness, and love I witnessed in the eyes of the fathers made me want to stand up and applaud them, to thank them for being exactly what their child needs. Not necessarily super dads, but fathers who were present, compassionate, available, and willing to share in the exciting moments of their unique children’s lives.

Your Father’s Day Tribute?

Would you like to recognize the father who’s making a difference in the life of your child with special needs this Father’s Day? The comment box below is waiting for your Father’s Day shout out!

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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Kathy Guzzo and her husband live in Northern Illinois and have 4 adult children. One of her daughters was diagnosed with lupus and Epstein Barr Replication as a young adult. Another began struggling with depression and OCD in her mid-twenties. She understands the need for her daughters to be able to make their own decisions regarding their health, but the nurturer in her sometimes has a hard time letting go. She desires to direct others to the peace and hope that God has abundantly available for them.

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5 Ways to Regain Special Needs Parenting Focus

5 Ways to Regain Special Needs Parenting Focus

by | May 20, 2015 | Different Dream, Self-Care and Stress, Special Needs Parenting

5 Ways to Regain Special Needs Parenting Focus

Parenting is the ultimate in multi-tasking jobs. We have so much to attend to at the same time. Kids. Housework. Kids. Meals. Kids. Self-care. Kids. Getting to work. Kids. Errands. Kids. Communicating. Kids. Add a child with special needs to the mix, and the list of jobs grows exponentially. Kids. Therapy. Kids. Appointments. Kids. Medical procedures. Kids. Meltdowns. Kids.

And yet.

With so much swirling around us, we sometimes talk ourselves into believing we can multi-task without negative consequences. But, new research is showing that multi-tasking is not that good for us because it trains the brain to hop back and forth. This constant hopping keeps us from concentrating on either cognitive task so nothing gets done well.

Sound familiar?

Recently I read a magazine article with several tips for getting rid of distractions and maintaining focus. The piece was written for business people, but to me the tips had “special needs parenting focus” written all over them.

5 Ways to Regain Special Needs Parenting Focus

These 5 suggestions were written for grown-ups working with grown-ups, so the transfer to grown-ups raising children isn’t 100%. But with a little tweaking, they can make regaining a special needs parenting focus easier to do:

  1. Stop hopping. When a new idea or activity comes to mind, resist the temptation to hop from one thing to another. Of course, with kids have a way of forcing you to hop sometimes–like when they string the cat from the ceiling fan or have a malfunctioning g-tube–but it’s also really easy to use their hopping to justify ours.
  2. Write it down. Stop and write down your thoughts instead moving on to the task-that-has-to-be-done-right-now-or-I’ll-forget-it. Once it’s written down, it’s harder to forget…unless you lose the piece of paper or the dog eats it. Maybe stick it on the fridge with a magnet, up high where the kids can’t reach. Yet.
  3. Go back and address the items on the list. Take care of them one by one and check them off as they get finished. Such a good feeling!
  4. Avoid screen sucking. You know how you sit down “just to check email quick” and an hour later you’re still at it? Try setting a timer when you sit down at the computer or check your phone. When the timer goes off, you’re done. No cheating allowed!
  5. Set aside 30 minutes a day for uninterrupted thinking. That may feel impossible with young kids and children with special needs at home, but time to sit, think, and plan for tomorrow can make tomorrow go so much easier. If 30 minutes is out of the question, start with 15. Or even 10. Doing so trains the brain to focus on the same thing for longer periods of time.

There was a time when, as a young parent, the suggestions above would have seemed intimidating or frustrating. Why? Because I tend to be a perfectionist. But over the years, I’ve learned that special needs parenting isn’t about doing things perfectly. It’s about inching forward in tiny increments, one small step at a time, for the good of our kids.

So instead of being intimidated or frustrated because you can’t address every suggestion immediately and perfectly, try just one. And when you’re ready or circumstances allow, try another. And another. And another. Take baby steps every day to regain your special needs parenting focus. After all, we cheer like crazy when our kids make baby steps in their progress. It’s about time we start cheering for and cherishing our own baby steps, too.

How Do You Maintain Your Focus

How do you keep daily distractions from disrupting your special needs parenting focus? Share you ideas in the comment box. Thanks!

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 the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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10 Special Needs Survival Skills

10 Special Needs Survival Skills

by | May 18, 2015 | Different Dream, Self-Care and Stress, Special Needs Parenting

10 Special Needs Survival Skills

Do your caregiving duties ever make you feel like you’re drowning? I remember feeling like that so often when our son was young, in and out of the hospital for four years. And because I know many of you feel that way often, I attended an Accessibility Summit workshop entitled Survival Skills for Mothers on the Journey. It was presented by Emily Colson, mom to a son with autism and author of Dancing with Max. What she shared was so encouraging and so practical, I had to pass these 10 special needs survival skills to you.

10 Special Needs Survival Skills

1. Go Out and Live Big. Instead of choosing isolation, go out and live big, even if your child may have a meltdown. But before you leave home, decide what you will do if you need to leave early. Check for easy exits when you get where you’re going. And pair something hard with something your child loves. Do the hard thing first during the outing so the fun one is a reward.

2. Laugh. Laughter really is good medicine. So make time for fun and silliness at home and while out living big. Go so far as to plan funniness!

3. Keep a Right Perspective. While dealing with challenges, look for gifts and beauty. Show gratitude. Think about how your child sees life. And finally, look at things with eternal eyes. This world is not the end.

4. Let Others In. We think accepting help imposes on others. But people need our kids. And a good support system and sense of community has been proven to lengthen life spans 8–10 years. Other studies show being part of a faith-based community adds 4–14 years to a person’s life.

5. Live with Purpose. Ephesians 2:10 says this: For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do. If that’s true, our kids with special needs are part of God’s plan for us. So ask yourself: What am I going to do with this experience? What is God’s purpose for us? Are there gifts in this?

6. Take Your Thoughts Captive. Thinking negative thoughts affects brain function and physical health. Therefore when our thoughts go into a  negative spiral, take them captive as we’re commanded in 2 Corinthians 10:5. It’s hard work and it takes practice, but doing so makes a huge difference.

7. Take a 5 Minute Rx. Self-care is an essential survival skill for moms raising kids with special needs. Many moms can’t get away for an hour or a day or a weekend devoted to self-care. But they can find 5 minutes, enough to create a sense of caring for self. The 5 minute Rx could be stepping outside to breathe some fresh air, making a healthy snack, reading for 5 minutes, or writing in a gratitude journal.

8. Do Better, Not More. Rather than automatically saying yes (and wishing you hadn’t), or saying no (and feeling guilty), stop and ask a few questions before answering: Will doing this help me focus on what I need to focus on? Will this activity restore or drain me? When Emily explained this skill, it reminded me of something our pastor says quite often. It’s not a matter of basing our choices about where to spend our time on whether something is good, because the world is full of good things. We can’t do them all. So we have to choose what is best, because God wants his best for us.

9. Live with Hope. Give up perfection and choose hope in a God who uses imperfect people instead. Colson said, “Don’t aim for perfect, but shoot for joy.” And my favorite quote of the workshop is this one. “Give yourself permission to flounder.”

10. Remember Who You Are. At this point in the workshop, I had to leave to man my book table, so I can’t expound on this one. But you can imagine that it is vital to retain a sense of yourself in the midst of the chaos.

Your Special Needs Survival Skills?

What special needs survival skills would you add to the list…other than wine and chocolate? Please share them in the comment box! Then, stop by Emily Colson’s website to check out her blog and read more about her.

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 the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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4 Tips to Creating a Special Needs Mom S.E.A.L. Team

4 Tips to Creating a Special Needs Mom S.E.A.L. Team

by | May 14, 2015 | Different Dream, Self-Care and Stress, Special Needs Parenting

4 Tips to Creating a Special Needs Mom S.E.A.L. Team

Wouldn’t it be great if every special needs mama was surrounded by her own team of special needs S.E.A.L.s? Imagine how a well-trained, cohesive team of people determined to achieve the impossible and dedicated to the well-being of a special needs family, could make life easier for special needs Mama S.E.A.L.s. But how can a mom up to her eyeballs in caregiving duties create a successful special needs mama S.E.A.L. team. An article in Southwest Airline’s inflight magazine (April, 2015) shared four team-building tips that come straight from Navy S.E.A.L.s. When I read the article, my reaction was I have to share these with Different Dream readers. They could use them to build a S.E.A.L. team spirit amongst the people that work with their kids.

4 Tips for Creating a Special Needs Mama S.E.A.L. Team

#1: Special needs mama S.E.A.L. team members are confident about contributing to the team. They care more about contributing to the team than to themselves. Mama S.E.A.L.s need to preach and teach message to the people who care for their children. It’s not about any individual adult working with a child. It’s about everyone doing whatever the child needs. Special needs S.E.A.L. mamas constantly focus team members’ on their purpose: the child.

#2: Special needs mama S.E.A.L. team members trust one another to do what’s best for the child. Therefore Mama S.E.A.L.s, as the director of their kids’ care, have to create trust, too. They need to encourage and praise supportive work among team members. They need create a “got your back” culture with the ultimate goal of having the child’s back at all times.

#3: Special needs mama S.E.A.L. team members need to be trained. Mama S.E.A.L.s observe the people working with their kids to assess their strengths and their weaknesses. Then they build upon those strengths and offer education and training to address the weaknesses. So if an in-home caregiver seems hesitant about feeding tube feedings, feed your child together a few times. If someone else is a whiz at handling your child’s behavior, ask him to share his techniques with the rest of the team.

#4: Special needs mama S.E.A.L. team members need to know what other members of the team do. Mama S.E.A.L.s should make sure every member of the team knows something about what the other members do. Enough to temporarily carry on if someone is sick or injured or moves away. Which is why Mama S.E.A.L.s make cross training part of the training mentioned in tip #3.

What Tips Would You Add to the List?

If you’re a special needs mama S.E.A.L. you may have a few more tips for readers about creating a cohesive, well-trained team to work with your child. If so, please feel free to share them in the comment 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.

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Jolene Philo is the author of the Different Dream series for parents of kids with special needs. She speaks at parenting and special needs conferences around the country. She’s also the creator and host of the Different Dream website. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and at Amazon.

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To Grandma from your Grandchild with Special Needs

To Grandma from your Grandchild with Special Needs

by | May 7, 2015 | Different Dream, Holidays, Special Needs Parenting

To Grandma from your Grandchild with Special Needs

Much of Mother’s Day week at Different Dream is devoted to moms of kids with special needs and rightly so. But today’s post is devoted to the grandmas who embrace their grandchildren with special needs and offer invaluable support to mommies. To honor grandmas, whose grandchildren can’t say how they feel, grandma and guest blogger Kathy Guzzo wrote this letter to grandma from a child with special needs for them. Grandmas, this one’s for you.

To Grandma from your Grandchild with Special Needs

Hi Grandma,

It’s hard for me to find the right words, so I decided to write you a letter. Well, Mommy is writing what I say, since it takes a long time for me to write letters that mean words.

I like you, Grandma, because you make Mommy and me feel special. You don’t make me feel like I’m bad, or make fun of me, or yell at me. Instead of making me play games I don’t want to play, you’ll join me in what I’m doing. You don’t ask me a lot of questions and are okay when I answer yes or no. Somehow you know whether or not I want to talk. Talking is so noisy, but I feel safe having someone just sit in the room with me. Sometimes it calms me down.

I like what you do for Mommy too. When you hug and laugh with her, she smiles on her face. Mommy doesn’t show her smile very often. It’s pretty. I like when you bring different foods over, even when I don’t like them. I’m a picky eater, but you bring Mommy’s favorite. Mommy likes when you talk about when she was little or ask her about the books she’s reading instead of talking about me. And boy does she love white daisies. That’s probably why you bring them to her sometimes. You’re nice to help Mommy with all her jobs around the house. When you help, she gets done faster and doesn’t seem so tired.

I like it when you come over and then Mommy leaves, too. Because sometimes Mommy and I just need to be apart for awhile. Besides, when it’s just you and me at home, we have fun. When mommy comes back it’s like she took a nap. I don’t want mommy to be tired all the time.

Mommy told me that you are her mommy. Mommy doesn’t lie so I know it’s true. Thank you for being her mommy.

I’m out of words and Mommy’s crying a little. Even though she’s smiling, too.

I love you, Grandma!
Your Special Grandchild

Have You Written to Grandma from your Grandchild with Special Needs Yet?

If you haven’t yet, you should. Because I’ve been a grandma for 2 1/2 years now and know much grandmothers love to hear from their grandkids. Whether it’s a card, a letter, an email, Skype or Facetime, or in person, remember your kids’ grandma this Mother’s Day. Or leave a shout out in the comment box for a grandparent who’s making a difference in the life of your child with special needs.

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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Kathy Guzzo and her husband live in Northern Illinois and have 4 adult children. One of her daughters was diagnosed with lupus and Epstein Barr Replication as a young adult. Another began struggling with depression and OCD in her mid-twenties. She understands the need for her daughters to be able to make their own decisions regarding their health, but the nurturer in her sometimes has a hard time letting go. She desires to direct others to the peace and hope that God has abundantly available for them.

Author Jolene Philo

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