The Truth About Being a Special Needs Parent

The Truth About Being a Special Needs Parent

The Truth About Being a Special Needs Parent

Guest blogger Trish Shaeffer is at Different Dream with a post about what she’s learned since she first became a special needs parent.

The Truth About Being a Special Needs Parent

Being the parent of a child with special needs is an adventure. There are many ups and downs and many unknowns, so we experience many emotions all in one day. We endure stress that would break a normal person, and we do it with a loving heart.

Sure, we may not always endure with grace, and we may not have a lot of dignity left when the day is out. Our hair is messy. Our clothes are chosen for comfort, not for the latest fashions. We may go a day or two without a shower or a wink of sleep. We spend some days not knowing when we’ll have time to eat.

Our lives are always on the go.
Our gas tanks run on empty.
We ignore the little things and think of the big picture.

There are days when we wish we didn’t have to be so strong.
There are days when we wish we were not the person the teacher calls with a list of concerns.
There are days where we want to scream that we have had enough.

We can feel like we’ll never survive raising such special, yet complicated children.
We sometimes wish parenting our beautiful children didn’t present a complex range of problems without easy solutions.
We are very lonely at times–canceled play dates or get-togethers with friends, missed birthdays and family gatherings.

Parents of children with significant special needs, life-threatening conditions, or serious illnesses are forever altered, forever changed by endless medical tests, appointments with specialists, and meetings with therapists and teachers. We learn a lot on the fly and have more knowledge about our child than most medical doctors do. We go through and will continue to go through much for our children. Even if we are at our breaking point, we do it all for them.

No matter what we deal with or what we go through, we must make time for ourselves. We must force ourselves to reach out for support—from a friend or family member or even an online group.

Know that you can do this.
You are a great parent.
You matter.

When you have been strong for so long, know that it’s okay to have a good cry…or a glass of wine.

Keep on laughing through the hard parts.
Things will look up and you will survive.
We are special needs parents.
We are made of tough stuff.

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Trish Shaeffer is the mom of 3 active boys with special needs. She’s a peer supporter for Parent to Parent and volunteers with the United Cerebral Palsy Network, Special Olympics, and the United Way. She’s also an equine volunteer at Leg Up Farm. She’s married to her best friend and biggest supporter, Chris Schaeffer.

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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

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?

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

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Eunice: The Kennedy Who Changed the World

Eunice: The Kennedy Who Changed the World

Eunice: The Kennedy Who Changed the World

Eunice: The Kennedy Who Changed the World is Eileen McNamara’s new biography about Eunice Kennedy Shriver. Shriver is best known as the founder of Special Olympics, but that monumental achievement is just one of her many contributions to the welfare of children, women, and people living with special needs and disabilities. Recently, I had a chance to ask Shriver’s biographer several questions about what she learned while researching and writing the book.
 
What piqued your interest in Eunice Kennedy Shriver?
Senator Edward M. Kennedy died two weeks after his sister Eunice in August 2009 and I was taken aback by the photo captions accompanying his obituary in the New York Times. In almost every one, his sisters were misidentified or not identified at all. I had been talking with Simon & Schuster about the astounding fact that a biography had never been written of Mrs. Shriver. The correction the New York Times ran of those captions convinced me to undertake that project. It was clear to me that – in her family and in history – Eunice Kennedy Shriver was invisible or indistinguishable from her sisters. I knew enough about her accomplishments to know that there was nothing invisible about her and that she stood out for her achievements among all the women – as well as the men – in the Kennedy family.
 
Can you briefly describe how you conducted your research?
It took me a few years to convince the five Shriver siblings that I could be trusted to produce a thorough, complete and honest biography of their mother if they would give me unrestricted access to her private papers, 33 boxes of which were in storage at the JFK Presidential Library in Boston. I understood their reluctance; journalists have not always dealt fairly with the Kennedy family. I pushed because I knew those papers – which her children had not read – would provide insights into the woman she was. I had won a Pulitzer Prize at the Boston Globe and later contributed to the coverage of the clergy sex abuse scandal in the Catholic Church detailed in the Oscar-winning movie “Spotlight.” I am grateful that the Shrivers did trust me with those papers and agreed to be interviewed for the book knowing they would not see the manuscript before publication. I talked as well to scores of Mrs. Shriver’s friends, extended family (including Ethel Kennedy) and colleagues in her lifelong campaign on behalf of people with intellectual disabilities. My interviews took me to London where I met a classmate who sat beside her in Study Hall in the convent school she attended when her father was the US ambassador to Great Britain. I went to Stanford University where she earned her undergraduate degree and to Chicago and West Virginia where she worked with juvenile delinquents and women in federal prison. I logged hours at the National Archives in Washington, learning all I could about the work she did during World War II in the US State Department and after the war in the US Justice Department.
 
What do you admire most about her?
Her persistence. She knew that no single battle wins a war. She fought all her life for the hearts and minds of lawmakers, presidents and members of the public on behalf of people with intellectual disabilities. When she began in the 1950s, those she championed were warehoused in Dickensian institutions, denied a seat in a public school classroom and a place on the playing field and a job in the community. When she won those rights, she did not stop. She knew that those rights had to be protected so she went back again and again to Capitol Hill to make sure the government kept appropriating money for special education, for group homes, for job training, for medical research. She was relentless because, without vigilance, progress can be rolled back and she would not stand for that.
 
What about her allows readers to identify with her?
Most of us do not have a 250-acre “backyard” on which to establish a summer camp for children with intellectual disabilities. But in 1962 when Eunice created Camp Shriver on her Maryland estate, she was doing what so many mothers of children with intellectual disabilities were trying to do on a much smaller scale in an effort to help their children enjoy life. Mrs. Shriver used her famous name, her father’s money and her brother’s presidency to kick down doors all over the world on behalf of those children. No one thought she’d succeed. She said toward the end of her life that she was always told by men that real power was not for her. But because she refused to listen to them, she was able to do what no one had ever done before. She got her strength from every mother she saw trying to do her best for her children as her own mother, Rose, had tried to help Rosemary, the older Kennedy sister born with intellectual disabilities. What woman cannot identify with Eunice’s struggle to be seen and heard in her family and in the world?
 
What would you list as her greatest contributions as a citizen of the world?
She was not satisfied with making progress on this issue in the U.S. alone. In the mid-1980s – when children with intellectual disabilities in places in China, the Mideast, Africa and the Soviet Union – were still being denied their basic human rights, she insisted that Special Olympics become an international movement. Getting children onto the playing fields in those places opened the door to getting them into group homes, into jobs and out of huge residential institutions. She made the world look differently at a child with intellectual disabilities. Where once the world saw the disabilities, she refocused the world’s attention to see the child.
 
What about her life can encourage parents raising children with special needs today?
Eunice Kennedy Shriver was told “no” all her life but she refused to take “no” for an answer. When she asked President Kennedy to create a National Institute for Child Health and Human Development so that federal funds could help scientists research the causes of intellectual disabilities and other conditions that impact developing fetuses and infants, the president told her that the medical establishment said it did not need such an institute. She said the establishment was wrong. She pointed to the miscarriage and the stillbirth that Jackie Kennedy had suffered in the 1950s as examples of circumstances that needed more research. She got President Kennedy to “yes.” Today that institute is named for Eunice Kennedy Shriver. When she wanted to make swimming a Special Olympic event experts told her the children would sink. “Nonsense,” she said, proving it with the success of young swimmers at Camp Shriver. All her life she counseled parents of children with special needs to trust themselves and their instincts, not the experts who too often are naysayers. She had faith in these children and their parents and now five million in more than 170 countries around the globe prove over and over again that Special Olympians can swim, run, jump, dunk a basketball and hit a baseball as well as any child on the planet.
 
Where can readers find  the book?

At their local bookstore or on Amazon.

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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Ministering To and With Those Who Teach Our Children with Special Needs

Ministering To and With Those Who Teach Our Children with Special Needs

Ministering To and With Those Who Teach Our Children with Special Needs

The end of August means the beginning of school, a time of year I greeted with equal measures of excitement and dread as a teacher. So my original idea for this post was to shed some light on what teachers think and feel when a new school year rolls around. However, the Holy Spirit had something else in mind because when I sat down to write, the special needs family camp where I’ve served for a long weekend during the past three summers kept intruding on my thoughts.

I was proud enough to burst my buttons when several family members who previously attended as recipients of camp services return as volunteers. This development should be the ultimate goal of every special needs ministry–a shift from ministering to those with disabilities to equipping them for ministry so all eventually minister with one another. As thoughts of camp and thoughts of the new school year cozied up in my mind, a new idea formed.

To read the rest of this post, visit Key Ministry’s blog for parents of kids 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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Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.

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What Teachers Think About the Week Before School Begins

What Teachers Think About the Week Before School Begins

What Teachers Think About the Week Before School Begins

Have you ever wondered what teachers think about the week before school begins? I can’t speak for every educator, but based on my thoughts during the 25 Augusts of my teaching career and what my teacher friends and rellies say is on their minds, the 5 statements below are a good sampling of what’s buzzing around in their brains.

#1: Inservice Is Going to Be the Death of Me

Teachers go back to work from 3 days to 2 weeks before students show up. Most of those days are dedicated to inservice meetings about new district initiatives, new government policies, state-mandated trainings, and more. The longer I taught, the harder attending inservice became. Because experience had shown me that for teachers to meet students’ needs, they need time to prepare in their classrooms and to read student IEPs and 504 plans. Since little to no time is allotted for those activities in the days before school begins, many teachers believe inservice will be the death of their good intentions for students.

#2: No Way Will I Be Ready for the First Day of School

My subconscious brain manifested this thought the week before school began through a reoccurring nightmare. It began with me at my end-of-summer teeth cleaning sitting in the chair stark naked but for the paper bib around my neck. In the next scene, I was walking down the hallway at school, again in the buff. I was puzzled because other than myself, no one in the dream was disconcerted. The nightmare ended when I woke in a cold sweat, grateful for my nightgown and for the realization that no one else knew how unprepared I felt. Every teacher has their own version of this nightmare because every teacher feels unprepared as school begins.

#3: There Is Never Enough Time in a Day

See  #1 and #2.

#4: My Students Deserve Much More Than I Can Give

Elementary classrooms contain 20–25 students each year. In a perfect 6 hour school day, each student could conceivably receive an average of 15 minutes of individualized attention. But whole class instruction chips away at individual attention time, so each child gets much less. Move into secondary school, and individual student time goes way, way down. Teachers do the best they can, but they leave work every day knowing their students deserve more, much more than they can give.

#5: Soon These Children Will Capture My Heart

A class roster is a list of strangers before school begins. But soon and very soon, as teacher and students get to know one another, the strangeness ends. Personalities emerge, shared history expands, and inside jokes develop. Before teachers know it, their hearts are captured by their students. On the last day of school, hearts break as teachers say good-bye to the students who have become their kids. Teachers know this will happen, and they enter the classroom willingly because their students and the joy they will share is worth the heartbreak.

With thoughts like these buzzing around their brains, it’s no wonder your child’s teacher looks nervous on the first day of school. So when you say a prayer for your child, say a prayer for the teacher, too. Really and truly, they both need it.

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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Back to School Encouragement for Parents Raising Kids with Special Needs

Back to School Encouragement for Parents Raising Kids with Special Needs

Back to School Encouragement for Parents Raising Kids with Special Needs

For parents raising kids with special needs, there’s no such thing as too much back to school encouragement. To make the encouragement parents need easy to find, the Different Dream gang compiled a list of 5 back to school posts. It’s our back to school gift to you, the caregiving parents we love and love to serve.

#1 : Eleven Back to School Special Needs Posts for Parents

This post from August of 2017 ago brushed the dust off 11 older back to school posts and compiled them into one easy list to make them easier for Different Dream readers to find. You’ll find summaries of the 11 posts and links to take you right to each of them.

#2 : Three Ways to Take a Piece of Summer into the School Year

Child psychologist and mom Dr. Liz Matheis knows how hard it is to let go of summer and embrace a new school year. In 3 Ways to Take a Piece of Summer into the School Year she explains 3 ways to make the transition a little easier.

#3 : Three Special Needs Transition Techniques for a New School Year

Transitions can be tough for kids with special needs and their parents, so in addition to Dr. Liz’s post on the subject, Different Dream served up advice from a teacher’s point of view also. Check it out at 3 Special Needs Transition Techniques for a New School Year.

#4 : My Child Has ADHD and the School Can’t See It

Trish Shaeffer writes honestly about how she advocated for her son until the school recognized his special needs. Check out My Child Has ADHD and the School Can’t See It to discover how she did it.

#5 : The Amazing Shrine School for Children with Special Needs

Last September, Jolene visited the Amazing Shrine School for Children with Special Needs in Memphis, Tennessee. It is, as the title of the post suggests, an amazing place. Perhaps it will provide back to school encouragement for parents of kids with special needs to dream big and advocate for transformational change.

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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