5 Tips for Making Special Needs Decisions, Pt. 1

5 Tips for Making Special Needs Decisions, Pt. 1

5 Tips for Making Special Needs Decisions, Pt. 1

Decision-making is part and parcel of parenting kids with special needs. Guest blogger April Brownlee is here with Part 1 of a 2 part series about how to handle those difficult decisions. Today, she shares the the first of 5 tips she’s developed for making decisions on behalf of her daughter who lives with Noonan’s Syndrome.

5 Tips for Making Special Needs Decisions, Pt. 1

I can never decide what is the hardest thing about parenting a child with complex medical issues. The unknown that lies ahead? Worrying how they’ll integrate at school or in new social settings? Second guessing the decisions you’ve made on their behalf? Making those decisions in the first place? All of the above with emphasis on the latter?

I spend some time in the online community dedicated to a group of syndromes, one of which affects one of my children—Noonan syndrome. Mostly, I find myself there just reading, absorbing, and learning, humbled and mesmerized by families challenged to make difficult decision after difficult decision. Noonan syndrome falls into the RASopathies—a group of syndromes in the body’s RAS-MAPK pathway. They’re the largest group of related neurodevelopment syndromes known. The gene mutation that causes these syndromes happens in a part of the body responsible for cell development. That equals the opportunity for almost any system and function in the body to be affected. And that equals parents of those affected often finding themselves faced with making difficult choices.

I don’t think anyone would argue parenting a medically complex child changes you in the most organic of ways. For me, I find myself always waiting for the other shoe to fall. If my kids are all healthy today, I can’t wrap my brain around why or how, because there were a few years that were really sticky. My nerves and my patience are definite casualties of dealing with it all. So how do parents who’ve faced even darker situations do it? How does one find peace in decisions where the outcome can’t be known in advance? How do you make a decision that could change your child’s life for the better—or go horribly wrong?

I asked parents who’ve had to make the hard choices. These parents have children affected by one of the RASopathies. But because the syndromes affect each person so differently, what they have learned can be applied to any parent advocating for any sick child.

Tip #1 for Making Difficult Medical Decisions

Do the best with the information you have at the time and never, ever, look back.

Laura Gardner is a Massachusetts mom whose 3-year-old daughter, Rozlyn, is still undergoing diagnostics to determine exactly what gene mutation she has. She says, “I think our most difficult decision was experimental surgeries on Rozlyn’s kidneys every three months, going in blind, not knowing for sure the outcome, trying with every part of you to stay positive and to hope and pray and have faith that all will turn out OK. The way I felt when it came down to it was I could not sit back and watch her suffer—that something had to be done. I researched a lot and now three years later, she is clear from a kidney standpoint for six months, and still on preventative meds. But surgeries were successful for her. Will more lie ahead? I don’t know, but I have no regrets.”

What Decision-Making Tips Have You Developed?

April will be back tomorrow with 4 more tips for parents like us. Until then, what do you think of April’s no regrets rule? What rules have you developed while making difficult decisions for your child? Leave a comment below. And come back tomorrow for Part 2 of April’s series.

Five Tips for Making Special Needs Decisions, Part 2

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Hygiene Tips for Kids with Sensory Sensitivities

Hygiene Tips for Kids with Sensory Sensitivities

Hygiene Tips for Kids with Sensory Sensitivities

Hygiene and kids do not always go together like rama lama lama ka dinga da dinga dong. Throw sensory sensitivity into the mix and shoo bop shoo wadda wadda yipitty boom de boom, chang chang changitty chang sha-bop is not gonna happen.

Hygiene Tips for Kids Who Are Sensory Sensitive

Claire Louise, mom to a son with who is sensory sensitive, knows this. So in a recent post at her blog, A Boy with Asperger’s Syndrome, she shares strategies she uses to help her son practice good hygiene. She offers these tips in these areas:

  • Teeth brushing
  • Bathing
  • Hand washing
  • Nail clipping and cleaning

Hygiene Tips: A Closer Look at Bathing

To give you an idea of what’s included in each category, here’s a closer look at the information in the section about bathing. First, she explains why her son doesn’t like bathing:

Reasons for the refusal are mainly centered around tactile sensations shortly following a swim in the tub. He understands that the feeling of wetness within certain body areas is quickly fixed with a towel, but it still concerns him leading to avoidance. One of the reasons is that he also hates the sensation of tight clean skin, wrinkly fingers, and other things that are very present (probably more so) once you have towel-dried.

Claire Louise then offers these specific tips:

  • Showers are a better option than bathing for children who don’t like the feeling of being submerged in water, tight and clean skin, or wrinkly fingers and toes.
  • Don’t use soap, as it makes skin feel even tighter.
  • Use a good body wash instead of soap.
  • Apply lotion and creams after bath or shower to ease feeling of tightness.

To read her suggestions for tooth brushing, hand washing, and nail clipping, read her entire post, Tips for Parents of Tactile Defensive Children. (Claire Louise is from the United Kingdom. Tactile Defensive is the UK equivalent of sensory sensitive.)

Your Hygiene Tips?

What strategies do you use to help your kids get squeaky clean? Leave a comment.

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 several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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Special Needs Parenting and Marriage

Special Needs Parenting and Marriage

Special Needs Parenting and Marriage

Special needs parenting can be hard on a marriage. Today, guest blogger Amy Stout shares a lesson she learned from the movie The Princess Bride about how to keep marriage strong.

As You Wish

Proverbs 15:1
A gentle answer turns away wrath…

I once had a grown-up temper tantrum—rather, a series of them. I wasn’t proud of my behavior, but I couldn’t seem to rein in all the emotions that were battling for victory during an incredibly stressful time. We were in the midst of making decisions regarding medical treatment for our daughter who experiences special needs.

In a moment of utter weakness, I just exploded on my soulmate. I knew he would be a “safe place” because of his great love for me. While I felt some relief at all the pressure being released, I felt terrible about my behavior and, in the strangest of moments, recalled one of our date nights from the past…

***

The setting of the movie my husband had chosen was a picturesque countryside with a charming cottage on a simple farm. The young heroine was strikingly beautiful despite her plain, drab dresses. Her golden hair, straight and unadorned, caressed the roughness of the fabric that was privileged to embellish her loveliness. Her situation in life was clearly beneath her and it seemed terribly unfair.

I sat next to my husband, his hand in mine, and I admired her grace and exquisiteness.

Until… I heard her speak.

With her words, she harassed and abused a young farm hand, a boy about her age. He was a worker at her beck and call—a boy who seemed to genuinely enjoy his job of serving her, of meeting her every need no matter how silly her demand, how trivial the request, or how rudely it was delivered. She further took advantage of his kindness and devotion by refusing to address him by name. Instead, she chose to insult him by labeling him Farm Boy.

It wasn’t long before this young man made an impression on me and, as it turns out, on her. After every offensive and unrealistic demand, he would softly and quietly respond “As you wish.”

It seemed to frustrate her that he never responded in anger, or refused to fulfill his commitment to her and she continued to press him relentlessly until one day his gentle and unyielding devotion won her affection and love for him. Westley, the farm hand, won the heart of Buttercup, the beautiful maiden, with three simple words delivered with grace, gentleness, and humility.

As. You. Wish.

Buttercup eventually became The Princess Bride to her beloved Westley and they lived Happily Ever After.

***

I have carried those scenes from the movie in my heart and mind for a very long time. Westley’s response to Buttercup is the most romantic thing I can imagine. To have someone love you at your absolute worst is every girl’s dream!

While Buttercup’s behavior and rudeness appalls me, I am ashamed to admit that, at times, her words have been mine. I cringe to realize how unlovely I have sounded to my husband, the one who is devoted to me and whom I love more than life itself—ugh!

On one occasion, when I spouted an order to my husband, he quietly but sweetly responded: “As you wish.” Thank goodness for gentle reminders of more loving ways to respond toward those we cherish.

Fellow wives (and stressed out mommies of children who experience special needs), I encourage you to demonstrate an as you wish heart. When you do, your husband will respond in pure, adoring, devotion.

***

Dear Lord, Sometimes our words and our responses are hurtful and careless.
Will you give us the courage to respond to you and those we love with an “as you wish” heart?
Please, bless our vulnerability and our humility with loving relationships that honor you.

What Do You Wish?

What do you wish for your marriage? How could Amy’s advice help make the combination of special needs parenting and marriage work? Leave a comment.

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Amy Stout is a wife, mother, and free-lance writer. You can visit her website at His Treasured Princess.

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Work Training and Placement for Young Adults with Autism

Work Training and Placement for Young Adults with Autism

Work Training and Placement for Young Adults with Autism

Employment and kids with special needs. Is there a way for the two entities to come together? That’s a question parents ask frequently as their kids with special needs get closer to adulthood. A report that aired April 22, 2013 on National Public Radio provides information about work training for those raising children on the autism spectrum.

Autism and the nonPareil Institute

The nonPareil Institute was founded by Gary Moore, the father of Andrew, who is on the autism spectrum. According to the NPR story, “Gary Moore wants to make the transition into the workforce easier for young adults on the autism spectrum.” That’s why he and his partner Dan Selic founded the institute, which is “a combination training program and software company for young adults on the autism spectrum.”

Moore says “he used to stay up at night worrying about what would happen to Andrew after graduation.” Out of that concern, the nonPareil Institute was born. “Although [Andrew] can’t tie his shoes or buckle his belt or do a lot of things independently, he can do technology,” Moore says. “He’s a digital native.”

Autism Hasn’t Stopped these Young Adults

NPR reporter Lauren Silverman also interviewed Amelia Schabel, one of the over 100 students going through work training at the company and highlights some of the two dozen company employees who land somewhere on the autism spectrum. To read or listen to the story, go to Young Adults With Autism Can Thrive In High-Tech Jobs. This is the kind of article that will give you hope or perhaps spur you on to think of ways to make the workplace more open to young adults with special needs.

Other Work Training/Employment Opportunties

Do you know of other training or employment opportunities for young adults with special needs? If so, leave a comment with a description of the organization and a link to it’s website. Your information may provide hope and direction for parents and their kids. Thanks!

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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Work Training and Placement for Young Adults with Autism

4 Ways to Share the Gospel with Kids Who Have Special Needs

4 Ways to Share the Gospel with Kids Who Have Special Needs

 

The gospel is meant to be shared by parents with their children, even their children with special needs. Today, guest blogger Becky Hallberg—mom of kids with special needs and trained in special education—offers tips about how to share the gospel with kids who have special needs.

Everyone Can Learn

I have felt challenged lately to share the gospel with kids who have special needs. Opportunities have been coming across my path like never before. It’s such a blessing, but at the same time, such a sacred privilege. But even more than the challenge to share Christ’s love with others has been the burden to share that with our kids—not just the three kids belonging to my husband and me, but our kids—your family’s children, my family’s children—our families who deal with special needs.

I am a teacher by profession, and took courses to be certified in Special Education as well as Elementary Education. There are many who would discount a child’s ability to learn based on their special needs. And I will be the first to tell you that, yes, it can be challenging to explain simple concepts to someone who struggles to learn. But that’s just it—it’s challenging, not impossible. I am a firm believer that any child, regardless of special needs that are present, has the ability to have knowledge of Jesus. Why? Because God made us to know and love Him—all of us, regardless of anything that seems to hinder us.  With the schooling of our children and all that goes along with that, the therapies, the medical issues, and the many other issues we face with our kids, how can we easily sow God’s Word into their lives? How can we make sure we are intentional about sharing God’s love with our children?

4 Ways to Intentionally Share the Gospel with Kids Who Has Special Needs

  1. Music: So many kids learn well by music. The repetition of the tune and the words helps it to sink in. There are great CDs that teach kids. There are ones that are as simple as Sunday school songs (Jesus Loves Me, The B-I-B-L-E), and other CDs that are contemporary worship that kids love as well. Find what works for your family, but play music for them if they like music!
  2. Bible Verses: Teach your child a Bible verse, and no, I don’t mean something complex. Shorten it, paraphrase it, write it on a note card, make it easy for them to see, and repeat it for them (and with them!) often. {Side note:  I know that many families have children who are non-verbal. These suggestions are not meant to discourage you. I’m not suggesting we have our kids memorizing and reciting Scripture if they are not able to do so. What I’m suggesting below are ways that we, as parents and friends, can fill their hearts with Scripture and the knowledge of God’s love!}
  3. Pictures: So many kids learn well if they have an image to go along with what they are learning. Pictures can be worked into many parts of how we teach our children. My kids love the preschool and early elementary Bibles that are full of pictures to go along with each story. Maybe that kind of book would work well in your home. Or maybe you’re good at designing images. Even a simple picture of a heart with the word Jesus on it would help our kids to visually remember that Jesus loves them! This can be as easy and simple as you need it to be, or as intricate and detailed as you would like it to be! I’m not great at art, so I’m always thankful for resources with great pictures, or the opportunity to draw my own simple image.
  4. Time: Spending time with our kids can be the easiest way to plant God’s Word in their hearts. Often, when we’re driving to therapy, I will use that opportunity to play some worship music, or to work on a Bible verse with my son. It’s simply a matter of taking the opportunities that we naturally have, and making the most of them. My husband reads with the kids before bed each night. Some of the stories are more adventure-like, some are more biblical-based. It’s just one of those times when we’re already focused on the kids, and we’re doing just a little more to show the importance of God’s love.

How Are You Being Intentional?

How are you being intentional, and practically sowing God’s Word into your child’s life? The suggestions I’ve made are just a few of the many ways we can do this. And, really, if you’re sharing God’s Word and God’s love with someone, especially your child, there are so many right ways to do that. Let’s make sure we’re being intentional with our children and God’s love!

Leave a Comment if You Like

Please share ideas you use to share the gospel with kids who have special needs.

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5 Ways to Move Beyond Overwhelmed

5 Ways to Move Beyond Overwhelmed

5 Ways to Move Beyond Overwhelmed

Parenting kid with special needs can be overwhelming.
Stressful.
Frustrating.
Enough to give a person high blood pressure.
We all know that. What we don’t always know is how to cope with the demands of care giving.

Resources for When You Feel Overwhelmed

Mary Mazzoni blogs about parenting adult children with special needs at Life Beyond IEPs. Her blog is full of practical tools and tips. Many of them are applicable for young children with special needs, too. Even if your child is still quite young, Mazzoni’s blog is a wonderful place to go when you’re overwhelmed at the though of your child as a young adult. Looking through the resources she offers and reading her advice can have a very calming effect on worried parents.

5 Ways to Move Beyond Overwhelmed

In a recent post, Mazzoni suggested these 5 strategies for moving beyond overwhelmed:

  1. Adjust your own oxygen mask. Your first priority is to build wellness into your regular routines—and your child’s.
  2. Begin with the end in mind. Having a vision for the future clarifies our perspective and helps us set clear priorities.
  3. Grow a support network. You can’t go it alone. No one can. Your child needs a network of relationships—and so do you.
  4. Consume information wisely. Discern what information is truly helpful.
  5. Start to move. A small step in the right direction creates energy for the next step.

How Do You Lower Your Blood Pressure?

Now that you’ve seen Mazzoni’s suggestions, what would you add to the list? Which of them works for you? How have you learned to lower your blood pressure while raising a 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 both in the upper right column on this page.

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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. 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 Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, was released in November of 2022.

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