IEP Tips from Parents for Parents

IEP Tips from Parents for Parents

by | Mar 16, 2017 | Advocacy, Different Dream, Special Needs Parenting

IEP Tips from Parents for Parents

A few weeks ago, I attended the Engage Conference sponsored by 99 Balloons. One of the workshop sessions was a panel discussion called Navigating the IEP. The panel consisted of 2 parents of kids with IEPs and 1 educator who often attends IEP meetings and annual reviews. The moderator, Matt Mooney, asked the members of the panel to share their best 2 pieces of advice for parents involved in the IEP process. Their answers were wise enough to merit passing along to parents getting ready for their children’s initial IEP meeting or annual review.

Joe’s IEP Tips

Joe first advised parents to be patient and willing to compromise on non-essentials. Parents are their kids’ biggest advocates and want a lot for them. But some requests aren’t reasonable or essential. For his son, that meant not pressing for inclusion in every subject area while insisting his son’s one on one paraprofessional move with him from grade to grade. Second, Joe reminded parents that whatever is in the IEP must be followed. So it’s important that what’s essential for your child is written in the IEP. Parents should then firmly, but without rancor, insist the IEP be followed.

Ashley’s IEP Tips

Ashley’s first piece of advice was to know what you want for your child. You know your child better than the educational experts do. You are also part of the IEP team and have the knowledge to customize the plan to meet your child’s unique needs. Several of the goals presented at her daughter’s initial IEP meetings were not appropriate for her child. So Ashley asked for time to read through the IEP, study the goals, and return at a later date with more appropriate goals. Her second recommendation was that parents try to cultivate a team atmosphere with the experts at the IEP meeting. Most likely parents will deal with the same team of experts for many years, and they really do care about their students. It’s in the child’s best interest to maintain good relationships with them.

Mindy’s IEP Tips

Mindy, who is an educator often present at IEP meetings, counsels parents to be well-informed so they understand what’s being discussed at the initial IEP or annual review meetings. The more informed the parents are, the more likely the school is to meet their children’s needs. She also reminds parents that communication can be hard at IEP meetings. If they can rein in their emotions, it makes a big difference.

Your Best IEP Tips

Okay, now it’s your turn. Leave a comment about your best IEP tips or your reaction to what Joe, Ashley, and Mindy shared. 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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To Be a Better Caregiver: The Art of Technological Restraint

To Be a Better Caregiver: The Art of Technological Restraint

by | Mar 15, 2017 | Different Dream, How-Tos, Special Needs Parenting

To Be a Better Caregiver: The Art of Technological Restraint

A recent moment of clarity showed guest blogger Kimberly Drew how to be a better caregiver. Her revelation may not be quite what you expect, but it could make you a better caregiver, too.

Once in a great while, I have moments of mental clarity. The haze of information overload and technical jargon dissipates, and I feel like my soul can breathe. This happened recently when my husband and I took an afternoon hike. Except for a photo at the top of the hill, we didn’t look at our cell phones.

It was wonderful.

However, when we were done, my smart phone had notifications of trivial things that “needed” my immediate attention. The phone puts me at the constant disposal of anyone and everyone.

What can be a tool to enhance life can also be an iron shackle.

This last year, my social media account exploded with hatred from all sides. A Huffington Post article written by an opposing worldview left me shaking and teary and sleepless. Events are added on Facebook and if you don’t RSVP, you’re considered rude. Then there is the problem of looking fake or shallow if you put up too many smiling photos or cheerful status updates.

This is insanity.

Social media is like an online scrapbook of your life. There is nothing wrong with sharing the highlight reel. But, we are not the sum of our photos and status updates. We live in an age where transparency and vulnerability trump discretion at every turn. I can’t wrap my head around some of the unattractive ranting, raving, and complaining that happens on social media. We have lost the art of a proper word given at a proper moment for a proper purpose.

Social media sharing sites are a free-for-all.

There is also the problem of current news, politics, world news, and the internet. There are a lot of stressors we cannot avoid because we are caregivers. I once did an online survey from a reputable health site about my “actual age.” I was surprised to see that the results added an entire decade to my age because I am the caregiver of someone with special needs.

Stress is not good for the body.

It’s necessary to abstain completely from technology and media. They can be powerful tools that improve our lives. I get several blogs and devotionals sent to my e-mail. I love having a phone, knowing I can make an emergency call when I’m driving and find directions to a new specialist. The question at hand is this: Do we want to add the extra and unnecessary negative voices and time constraints that come from unbridled technology and media use?

At the end of the day, no one will quiz us on current world politics or our online presence.

However, if we don’t get a grip on technology use, we will lay in bed at night trying to drown out the negativity so that our minds can rest. The full time care of our children with special needs takes a lot of time, energy, and effort. We want our precious children to get our absolute best. To give our best, we have to be our best. To be our best, we might have to go against the cultural grain and pull away from some of the standards of use for technology and media.

To be a better caregiver, we must practice technological restraint.

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.

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Stress Relief for Parents of Kids with Special Needs

Stress Relief for Parents of Kids with Special Needs

by | Mar 9, 2017 | Different Dream, Self-Care and Stress, Special Needs Parenting

Stress Relief for Parents of Kids with Special Needs

Stress relief for parents of kids with special needs is essential. But finding time for stress relief can seem impossible. Recently the members of a Key Ministry support group, who are all parents dealing with the stress and trauma of raising kids with special needs, shared their best stress relief tips. This list is a heart offering from group members who want to encourage you on your caregiving journey and contains something for every stressed parent of a child with special needs.

Stress Relief for Parents of Kids with Special Needs
  1. Join a support group. One mom described a support group that meets monthly for a potluck meal. The parents talk while the kids play in the gym. Other parents mentioned online support groups which allow them to participate from home and eliminate the need for childcare.
  2. Pray. Several parents mentioned prayer creatively woven into daily activities. My favorite was a mom who prays while she knits.
  3. Read Scripture. One mom especially recommended this list of Psalms for the Anxious in times of stress.
  4. Online Bible study. Find a study group filled with positive people who will encourage, forgive, and hold you accountable without becoming legalistic or judgmental.
  5. Massage. Several people suggested getting a monthly massage. I didn’t understand what a stress reliever this could be until my sister gave me a gift certificate a couple years ago. Now I’m hooked and look forward to the one time a month when someone cares for me, and I just lay there.
  6. Hire a housekeeper. “Hire a housekeeper! Even if it’s only once a month,” a mom said, “It’s the best money ever spent.” Several other parents seconded that idea.
  7. Do a crossword puzzle. Not necessarily the Sunday crossword from the New York Times. Just something with enough challenge to keep you interested, but simple enough to avoid frustration.
  8. Spend time with a friend. A mom explained how easily this idea can be accomplished. “Even if it’s crashing on their couch talking. Sometimes I just need a bit of time away from home.”
  9. Grab good coffee after work. I love how this mom describes this indulgence. “Sometimes after a stressful day at work, I go to Starbucks and get my favorite drink and just sit in the car in silence before picking my kiddo up from daycare. Those few moments of just me and coffee sometimes make all the difference.“
  10. Go to coffee with a friend. Which, as you can see, is a variation on #7 and #8.
  11. Make a pot of special tea. A lovely adaptation of #8 & #9 for non-coffee drinkers.
  12. Get my nails done. Like a massage because someone cares for you instead of you caring for everyone else.
  13. Go somewhere alone. Go to a park and just sit. Go to a movie. Or volunteer to run errands all by yourself. There’s nothing like being alone in a crowd while completing tasks that makes your life easier.
  14. Plan weekend girlfriend trips. One mom said she takes weekend trips with girlfriends once in a while, or to visits people she can stay with who are good company.
  15. Outside time. Plan a walk or go for a bike ride with adults only.
  16. Read a book. Just for fun, not for information about your child’s condition.
  17. Listen to books on CD. One mom said she combines service and pleasure by sewing newborn baby blankets while listening to an audiobook. This is a great stress reliever for me, too. Listening to an audiobook while doing housework or cleaning makes the most menial task fun.
  18. Plan an early bedtime. With your spouse, of course.
Your Stress Relief  for Parents of Kids with Special Needs Suggestions?

What are your best stress relief for parents of kids with special needs suggestions? Make this list better than ever by leaving your tips 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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How To Help Your Child with Special Needs Conquer Fear

How To Help Your Child with Special Needs Conquer Fear

by | Mar 1, 2017 | Different Dream, How-Tos, Special Needs Parenting

How To Help Your Child with Special Needs Conquer Fear

Please welcome guest blogger Trish Shaeffer to Different Dream today. She’s here to share what she’s learned about how to help her child with special needs conquer fear.

How to Help your Child with Special Needs Conquer Fear

Everyone, from the youngest child to the oldest adult, experiences fear and anxiety at one time or another. Feeling anxious in a particularly uncomfortable situation never feels very good. However, with kids such feelings are not only normal, they’re actually necessary. Dealing with anxiety teaches young people how to handle unsettling experiences and challenging situations of life. Fear or anxiety can also keep kids safe, although too much fear may hinder a child’s exploration or understanding of the world socially, personally, and academically.

Anxiety, sensory processing disorder and OCD make the world a scary place for my son who has special needs. Loud noises are terrifying. So are bright lights and strange places. So, how do we help our kids with special needs conquer their fears in a healthy way?

Step #1

The first step is recognizing the fear is real. If it’s real to your child, it should be real to you, too. You may think it’s silly to go along with the whole “monster under my bed” check, but do it. Never belittle a child’s fears because that won’t make them go away. Instead, grab that “anti-monster spray” and get that critter out from under the bed. You’ll be your child’s hero!

Step #2

Provide support and gentle care so you approach your child’s fear as a team. Children who can visualize the intensity of the fear on a scale of 1 to 10 (1 being not too scary and 10 being totally terrifying) may be able to see the fear as less intense then first imagined. So teach your child to rate his or her fear. The monster under the bed might rate a 6, while a shot at the doctor’s office may be a 10.

Step #3

Teach coping strategies. For example, my son is terrified of strange places. Instead of avoiding them or telling him to stop being silly, I make myself his safe haven. I encourage my son to venture away from me ever so slowly while assuring him that he can always come back to me. I also use positive statements like, “You can do this” or “It’s okay; I’m here.” I repeat these statements in fearful situations to calm his mind and distract him from the fear. Relaxation techniques like deep breathing are also helpful.

Step #4

Stay calm. Refuse to get worked up in fearful situations. Don’t push your fear on to your child. I am afraid of heights, but I am not going to cause a scene about it in front of my son.

These tricks help my son not only recognize his fear, but move through it while easing his mind. They don’t work in a day, but they can help a child with special needs to conquer fear.

My son, now 6 years old, is no longer frightened in strange places–as long as he has his mommy in eyesight. Baby steps! Soon he will be out exploring the world on his own, without me as his safety net.” Until that happens, we will continue to take one day at a time.

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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Trish Shaeffer mom of 3 active boys, a 9-year-old and 5-year-old twins who were born 2 months early and have 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 Shaeffer.

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Ten Strategies for Living Cheek by Jowl with Disability

Ten Strategies for Living Cheek by Jowl with Disability

by | Feb 27, 2017 | Different Dream, How-Tos, Special Needs Parenting

Ten Strategies for Living Cheek by Jowl with Disability

These days, we’re living cheek by jowl at our house.

Four adults.
One very, very active toddler.
One dog.
In the dead of winter.
For six weeks.

We’re all crammed together in the first floor of a ranch house with less than half the square footage of our previous home. At this point, all four adults are counting the days (and sometimes the hours) until the basement apartment remodel is completed, so one very active toddler and his two parents, and one dog can occupy their new digs and enjoy the great outdoors come spring.

God’s granted me some “aha” moments during our cheek by jowl winter. The most surprising has been how similar this experience is to parenting a child with special needs. In both circumstances, relationships with the people you love most can begin to feel too close.

Too intense.
Too fraught with emotion.
Too fragile.
Too hard to maintain.

But without those relationships, life becomes empty.

Purposeless.
Disconnected.
Hopeless.
Isolated.

That’s a dangerous state for anyone, but especially for parents of kids with disabilities special needs. Relationships are what sustain and encourage us, after all. Maintaining relationships is crucial, and in this cheek-by-jowl winter I’ve resurrected and implemented ten strategies I first learned when our son’s special needs felt too close and intense.

  1. Double check communications. Ask for and give clarification frequently rather than assuming you understood what someone said or that they understood what you said. Provide gentle reminders and ask others to remind you so things don’t fall through the cracks. My husband appreciates sticky note reminders placed where he can see and take them with him to work in the morning. I appreciate email reminders from family and friends about appointments or promises made to them.

To read the rest of this post, go to Key Ministry’s Special Needs Parenting blog.

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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Ten Tips for Starting an Elimination Diet for Kids

Ten Tips for Starting an Elimination Diet for Kids

by | Feb 15, 2017 | Different Dream, How-Tos, Special Needs Parenting

Ten Tips for Starting an Elimination Diet for Kids

An elimination diet can improve the health and even save the life of a child with food allergies. Guest blogger Jill Seaney is here to share what she has learned since her son with special needs began a food elimination diet for kids.

Ten Tips to Starting an Elimination Diet for Kids

Have you been told by a doctor that what your child is eating is making him sick? Has an elimination diet been recommended for food allergies or intolerances? You are not alone! When my one-year-old was diagnosed with Eosinophilic Esophagitis (EoE) in 2015, we were told to begin a food elimination diet: milk, soy, wheat, eggs, nuts, corn, fish, and more. I was sent home with a list of all the names for these foods and basic instructions on how to read labels. I felt overwhelmed and wasn’t sure where to even start! What to cook? What about at restaurants? Grocery shopping sounded daunting.

Fast forward a year, and I am proud to say we have come a long way in figuring out safe and delicious foods for our little guy! Below is a list of ten tips to help those just starting an elimination diet for kids.

  1. Start simple. Figure out basics and staples that can be used or must be eliminated. Once you know your basic ingredients, you can try new recipes one at a time. Allergy friendly groceries are usually much more expensive, so instead find specialty food stores in your neighborhood. Go on a less busy day so that you can find basic ingredients and read labels. Once you’ve gathered the basics, start looking for other items for meals.
  2. Connect with food allergy friends. There is so much knowledge on the internet and a lot of it comes from moms or others who have already been down this road. Facebook groups have been especially helpful for recipes and tips for food substitutions.
  3. Get a second refrigerator. Then you can shop in bulk instead of going to multiple stores every week. You’ll be able to rotate stores each week.
  4. Search and create Pinterest boards. There are a ton of recipes on Pinterest! I like to keep all my recipes pinned there so that I have them all in one place.
  5. Store food favorites on your phone. Keep a running list of foods you liked and where you bought them. This seems silly at first, but once you add more recipes, the food list can get long. This really helps with grocery shopping planning.
  6. Research restaurant menus and ingredients. Eating out can be really difficult. Look at the restaurant’s website menu for allergen or ingredient lists. Then call beforehand to ask questions so ordering isn’t so chaotic. When in doubt, bring food to insure peace of mind because most restaurant staff members aren’t trained about all the different names for foods or ingredients used in dishes. The risk of cross contamination in restaurants is high, also.
  7. Plan meals a week ahead. By preparing ahead you won’t be scrambling when there’s nothing safe to cook in the house. I have a small white board on my refrigerator. Each week I write out what I am making each day. This really helps with grocery shopping too.
  8. Make meals the whole family can eat. That way one person won’t feel singled out. This is really hard, but it was a life changer for us! When the finished product isn’t something my son can eat, I modify portions as I cook so that he can eat almost the same meal.
  9. Read labels. Food companies are required to list ingredients and note any of the top 8 food allergens in their products. The most difficult thing about reading labels is learning the different names for each food. For example, corn has over 50 different names or variations. I screen shot the different names for each of my son’s food allergens and save them in my phone for quick reference.
  10.  Keep a food journal. Food journal apps can help with this this. I record what my son eats and keep notes about any adverse reactions after eating. That way I can easily go back to the food journal as a reference.
Your Tips for Starting a Food Elimination Diet for Kids?

Which of Jill’s tips are most helpful to you? What tips would you add for parents starting food elimination diets for kids? Share your thoughts 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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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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