As was mentioned last week in guest blogger Gillian Marchenko’s post, IEP annual review season is in full swing for parents of kids with special needs identified by the public schools. Gillian shared 5 ways to set a positive tone during an annual review. It’s a hot topic, as proved by the number of times the post was shared, retweeted, and repinned. No wonder I did a happy dance when another guest blogger, Ellen Stumbo, sent a piece about how parents can prepare for annual reviews. Today’s post shares 2 of Ellen’s tips. The other 3 tips will post tomorrow.

Simple Tips Parents Can Use to Prepare for IEP Annual Review Meetings

It is no secret that one of the biggest woes for parents of kids with special needs comes yearly in the form of an IEP (Individualized Education Plan). Often times, parents walk into an IEP meeting as if walking into a battle in which they are outnumbered. Parents vs. School (teachers, therapists, support staff, etc.) and the child’s future is in the hands of the winning party. The end of the school year often marks a time where IEP’s are being drafted for the 2012-13 school year. I want to share with you simple tips that can help you as you prepare for your child’s IEP meeting.

Tip #1: Make a List of Goals

Ask yourself: What do I hope my child will accomplish in the coming school year? Break the accomplishments down into the different areas where your child will be receiving extra support, therapy, or special education modifications.

Remember: IEP goals are for school settings only. What does your child need in order to excel in an academic setting? I would love for Nichole to learn to ride a tricycle, and while our school has great therapists that will work on that, riding a tricycle will not necessary for academic achievement. Building leg strength and coordination on the other hand is important as children participate in Physical Education; riding a tricycle might just be a great way to get her to achieve those goals. Here are some examples I came up with before the IEP:

Speech: Nichole will be able to spontaneously use 3 word sentences.
Speech: Nichole will respond to “wh” questions: what, where, which, who

Fine motor: Nichole will independently cut a 6 inch wide piece of paper using adaptive scissors.
Fine motor: Nichole will trace her name with capital letters.

Gross motor: Nichole will climb safely on the playground equipment.
Gross motor: Nichole will demonstrate proper gait when running.

Social/emotional: Nichole will engage in dramatic play with a peer.
Social/ emotional: Nichole will take turns.

Academic: Nichole will rote count to 10 consistently.
Academic: Nichole will identify “on” “under” “besides” consistently.

The more specific you can be with your goals, the better!

Tip #2: Ask for a Copy of  the IEP Draft

A draft IEP is prepared before each child’s IEP meeting, and you can request a copy ahead of time. One of the reasons you might want the copy before hand is to deal with the emotional aspecst of an IEP on your own, at home. I know how overwhelming it can be to read tests results and have your child’s delays “packaged” together in a document.

As we do life with our kids day to day, we do not deal with all of their delays all at once. It really doesn’t matter that your child is not able to identify letters when they have finally mastered using a fork at the dinner table and you are over the moon with this new accomplishment. But with an IEP, every single area where your child struggles is documented and this can be difficult. It is okay to cry. Deal with those emotions, so that when you are meeting  with the team, you can push those aside and remember that your child does have great potential. The goal of the IEP meeting is to make sure there is a plan set in motion so that your child’s potential is achieved, so keep that in mind.

The IEP will have a list of goals from the teachers, therapists, and other support staff that might work with your kid.  Remember the list of goals you came up with for your child? This is where you get to compare the goals. Were some of them the same? Are some of them confusing to you? Is there anything  you think is important and should be added? Make sure to bring a list of the goals you want to see added, as well as questions you have concerning the “why” or “how” of certain goals listed on the IEP.

Remember, parents are team members in the IEP meeting. Do your part and be prepared!

How Do You Prepare for IEP Annual Reviews?

Do you have preparation tips for parents? Leave a comment to share your best tips. Your experience can be of great benefit to others. And come back tomorrow when Ellen will share 3 more tips to help you be a well-prepared advocate for your child at IEP Annual Review meetings.

From your comments about last week’s Q & A with Jill Kelly (wife of the Buffalo Bill’s former quarterback Jim Kelly), the series spoke to many of you. Interviewing her was a joy, and I was delighted late last week when a box of her books arrived on my doorstep. Not just one set of her four books, but three sets, along with a lovely note. The note is now in my special memories file, and one set of the books is sitting on my night stand waiting to be read. But Jill sent the other sets to be shared however I wanted. Which means it’s time for a book giveaway. First, here’s a look at the books up for grabs.

Without a Word: How a Boy’s Unspoken Love Changed Everything

Jill’s first book, Without a Word: How a Boy’s Unspoken Love Changed Everything is her memoir about parenting Hunter, the Kelly’s son with special needs. The summary on the book flap says, “More than a memoir, this book contains a mother’s heart – pieces of precious, journaled memories engraved on the author’s soul – as well as her long journey from resentment to forgiveness as a wife.” This book is signed by both Jill and her husband Jim.

Prayers of Hope for the Brokenhearted

Prayers of Hope for the Brokenhearted is small enough to tuck into a purse or diaper bag. The summary states that “Jill often wrote prayers in her journals. She poured out her anguish, pain, and questions to the One who could comfort, heal, and mend her broken heart.” This collection of simple prayers offers solace to anyone who experiences heartache and sorrow. This book is signed by Jill.

Prayers for Those Who Grieve

The summary of this beautiful gift book, Prayers for Those Who Grieve, says the following: “In this gift book of comfort, Jill’s prayers for those who journey through grief are accompanied by inspiring photographs of nature by award-winning professional photographer Brody Wheeler.” Again, this book is a signed copy.

Hot Chocolate with God

This book for tweens is written by Jill’s younger daughter Camryn. Jill and her older daughter, Erin, add their advice from time to time, also. The back cover says Hot Chocolate with God is “an interactive journey through this girls-only series…Combining the writings of the Kelly girls with activity elements in an engaging, exciting companion book to every girl’s walk with God.” This very colorful, fun book is signed by Camryn, Erin, and Jill.

How to Win One of the Books

To win one of the books, just leave a comment before midnight (CST) on June 1, 2012. I am always surprised how few people leave comments to enter the drawing. Maybe you don’t think you have any chance of winning, or maybe you think DifferentDream.com uses the contests to  collect information about you. Neither of those two reasons for not entering are true. You have an excellent chance of winning something, and your information is not collected for DifferentDream.com purposes or passed on to any third parties. So enter the contest. Tell your friends about it and encourage them to enter, too. I’m looking forward to hearing from many of you!

This series on time management for parents of kids with special needs is for anyone who ever feels like the person in the picture. In Part 3, guest blogger Amy Stout is back with five more strategies for parents like you and me. (Click here for Part 2 of the series which showcases Amy’s first five strategies. Click here for Part 1 of the series.) Amy passed along these strategies to be included in a workshop I recently presented at the Accessibilty Summit in Washington, DC. See what you think.

Strategy 6: PPPPPPP

PPPPPP stands for proper prior planning prevents poor performance, one of Amy’s husband’s favorite military acronyms.  How does it work? Amy and her husband lay out their clothes the night before. Amy buys or makes birthday and Christmas gifts way in advance.  The one thing she says they haven’t mastered is meal planning. She calls their family a work in progress.

Strategy 7: Take Time for Yourself While Multitasking

Amy takes time for herself, but it usually involves multitasking. She reads while her nails dry or in the bathtub. She composes emails while watching TV, Facebooks with international students while drinking coffee.

Strategy 8: Choose Imperfection

Amy’s house is very small. Her front door leads into my living room which is also the family room, TV room, toy room, dining room, and the laundry folding room. She says it usually looks like a hurricane hit it. Things are clean, but people are living in it.  Sometimes, it bothers her that this is the first room that everyone sees and that by looking at it, they will never guess how organized she is.  But Amy made a difficult choice for her personality type. She chose imperfection and reminds herself that her daughter will only be young once, to be thankful she and her husband are crowded into the same room, and that folded laundry isn’t so bad.

Strategy 9: Educate Others

Worrying about what other people think really inhibits time management.  Therefore, Amy eliminates educates others about “Kylie World”.  She creates lists of how to prepare Kylie foods, how to put her to bed, how to calm her, her favorite toys, her likes and dislikes, what sets her off, phrases that she uses, and how they are interpreted. Other lists explain how to administer her medications, describe favorite activities and toys, and contain emergency contacts.

Strategy 10: Be Diligent about Paperwork

To make waiver renewal time go easier, Amy says it helps to be diligent about filing important paperwork for the previous three years. Papers to file include reports from doctor’s offices, pay stubs, insurance reports, medication changes, incident reports, therapy reports, growth charts, and immunization forms.  Looking for all of that on the fly can be a nightmare!!

Time for Your Two Cents

Okay, now that Amy shared her tried and true strategies, how about you? Leave a comment about time management techniques you’ve discovered. Or comment about the tips Amy shared. We’d love to hear from you. While you wait for tips from two more guest bloggers in Part 4 posts next week, check out Amy’s site at www.histreasuredprincess.blogspot.com.

Jolene

Part 1
Part 2
Part 4
Part 5

Step Two of Friendship Circle of Michigan’s Great Bike Giveaway has begun! (For a contest refresher course, click here.)

Vote for Your Great Bike Giveaway Favorites

The deadline for entering the contest ended May 10, and the voting began yesterday. Here are a few things to remember as the voting begins:

1. This contest is only open to fans of Friendship Circle of Michigan’s Facebook Page. You must “Like” Friendship Circle of Michigan’s Facebook page in order to submit your photo and vote.
2. You may vote for any number of photos once throughout the contest (ex: you may vote for 50 different photos one time each, but you may not vote 50 times for the same photos).
3. Voting Begins on May 13^th 12:00am and ends on May 18^th 4:00 pm .
4. Encourage all of your friends and family members to vote for your submission or for the families you are championing.

Last Chance to Enter the WonderBaby.org iPad Giveaway

While on the subject of giveaways, tomorrow is the last day to enter the iPad giveaway at Amber Bobnar’s blog. To enter the contest, just send her an email by midnight May 15. To read the details and the link to Amber’s email address, click here.

Leave a Comment

Of course, if a DifferentDream.com regular reader wins either of the contests, please leave a comment so we can do a happy dance with you. And keep watching for a future guest post by Amber. She’s promised to visit DifferentDream.com once the iPad giveaway excitement dies down.

Happy voting,
Jolene

During my 25 years as a classroom teacher, I attended many, many annual reviews for my students with identified special needs. So I was delighted when guest blogger Gillian Marchenko send the following guest post just in time for annual review season. Parent who will soon attend an annual review may want to get a pencil and paper so you can take notes!

5 Ways to Set a Positive Tone at Your Child’s IEP Annual Review

It’s that time of year again when trees bud, hands dig in the dirt of our front yards, and bottoms numb on wooden seats in IEP meetings for our children with special needs.

What Is an IEP?

An Individualized Education Plan (IEP) is a document laying out the educational plan for school-aged children who show a 30% delay or more developmentally. The Illinois State Board of Education says that IEPS are like road maps, pointing out where a child is in her schooling, and where she should go.

I parent two children with Down syndrome, ages five and six. My behind has gone numb many, many times at these type of meetings. The best advice I give regarding IEPS is this: SET A POSITIVE TONE.

How You Ask?

Here are five cheat sheet ideas to cultivate a great work environment for all parties involved in helping your child reach his potential at school.

1. Prepare: If this isn’t your first IEP, find the previous document for review. Brainstorm goals you’d like to see on the IEP. If this is your first meeting, make a list of your child’s strengths and weaknesses and print it out. Also, know your rights as a parent. Start at the Special Education Advisor website, a social network full of information and advice.
2. Collaborate: This is a tough one for us because we are our kid’s best advocates. But advocacy doesn’t automatically translate into an “us against them” attitude. Of course, there are exceptions, but educators want your child to grow, succeed, develop. Be kind, listen, speak up, and be yourself. IEP meetings are great opportunities to make friends with your child’s teachers and therapists. Be on the same team.
3. Share: There may be a person in the IEP who hasn’t met, let alone spent considerable time with your child. Bring a picture of your kid doing something fun with the family, or jot down a funny thing she said the other day at dinner. Help those in the meeting remember that they are discussing a person, your child, a wonderful individual, who is not a statistic or a file.
4. Write It Down: If you request a change in the IEP, write it down and give it to your child’s case manager. Document your request as well, so that you have it to follow up, if need be.
5. Bring Food: I bring something for the group to enjoy; doughnuts, or fruit, or brownies. Pass out the treats during the meeting. This simple gesture lightens the mood and is appreciated by the staff. And don’t stress over providing something homemade. Swing by a grocery store and pick what looks good.

What Can You Add to the List?

Thank you, Gillian, for your 5 tips. As someone who used to attend those meetings (especially the after school ones) very, very hungry, I heartily endorse #5. How about you? Which of Gillian’s tips to you appreciate? And what would you add to the list? Leave a comment.

Jolene

Food allergies are a growing concern for parents. While preschoolers are at home, moms and dads are able to control what kids eat. But once children go to school, doing so becomes much harder. Almost impossible for allergies to milk, peanuts, and eggs – ingredients used more processed foods than many imagine.

How to Communicate with the School

In those situations, school registration is an important time to communicate about a child’s condition. I recently ran across an online article on the subject. It recommended the following proactive steps for parents to take:

• Register early
• Understand how the school operates
• Build your child’s support team
• Educate the team
• Establish your child’s food allergy emergency action plan
• Learn and influence school policies
• A note about other allergens
• Become a class parent
• Persist and educate

Each of these steps is explained in great detail in the original article which is found at www.triblocal.com.

Why Now?

Are you wondering why I’m running a post about school registration when school is almost over for the year? The reason will be clear once you read the article, which focuses on kids with severe allergies. Many safeguards need to be put in place before they arrive. Sometimes, schools must establish policies, obtain equipment, and even hire personnel. Traditional registration at the end of the summer may not allow the district the time needed to accomplish everything.

Now It’s Your Turn

Do you have a child with allergies in a school system? What safeguards are in place? How did you advocate for them? What would you add to the list above? Leave a comment!

Thanks,
Jolene

Those of you who visited DifferentDream.com yesterday met our special guest, Jill Kelly, when she shared the story of their son, Hunter. Hunter was diagnosed with Krabbe Disease as an infant and died from the condition at age seven. In today’s question and answer session, Jill explains how her family continues to advocate for children with special needs.

How are you involved in the special needs community now?

We have both a national and local presence. We do fundraising through Kellys for Kids, which is a global organization. Hunter’s Hope Foundation holds an annual medical symposium. During the four day conference, families come from all over the world to gain in-depth information about leukodystrophies, learn about the latest developments in scientific research and medical care, identify available resources, and develop support systems. We minister personally to those families when they are there. On a local level, we are active throughout western New York state. We join families as they fund raise, meet with kids at school. Hands-on love is a great blessing.

Erin and Camyrn have a ministry for tween girls. The first book in their Hot Chocolate with God series was released in September of 2011, and tweens can visit their website at www.hotchocolatewithgod.com.

What can churches, schools, friends, family, and the medical community do to better support parents of kids with special needs?

My advice is that people listen to parents. They are special needs advocates and very busy caregivers. They speak up only when the need is pressing. If they come to you, it is important. So listen because parents want listeners. I also encourage people to get involved with families. Live beyond yourself and get to know families and children. Once you leave your comfort zone, you will be blessed. And of course, pray for families.

Tell us about your books.

Without a Word is a memoir of life with Hunter. My prayer books are taken from my journals. They are raw and real, and God uses them with parents who are struggling with God. Prayers of Hope for the Brokenhearted comes from a season of confusion. Prayers for Those Who Grieve was written after our season of grief. My new book, Etched on My Heart: What We Learn and Why We Never Forget goes deeper into the moments when God reveals himself, even when we aren’t aware. It will be released in January of 2013.

Thanks to Jill Kelly

Thank you, Jill Kelly, for visiting DifferentDream.com and for sharing Hunter’s story with us. I was encouraged by what you shared and hope others did, too. Readers, leave a comment about how Jill and Hunter’s story touched your heart or changed your outlook. She would love to hear from you!

Today DifferentDream.com welcomes Jill Kelly for the first of two Q & A special needs parenting sessions. Jill and her husband Jim, former quarterback for the Buffalo Bills, are the parents of three children – Erin, Hunter, and Camyrn. Hunter, their second child and only son, was diagnosed with Krabbe Leukodystrophy as an infant and died when he was eight. In 1997, they founded the Hunter’s Hope Foundation to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies.

A few weeks ago, Jill and I spent an hour talking. Today’s post relates what her family learned from Hunter. Tomorrow’s post will be about how they remain active in the special needs community.

Would you share some of your special needs journey with DifferentDream.com readers?

Until and after diagnosis, we didn’t consider Hunter as special needs or handicapped. Because his condition was terminal, we treated him as terminal. It wasn’t until Christ intervened and we put our faith in him that we considered him as living. Early on, we were afraid and desperate. Our education was a continuous learning to let go and to let others come into our lives. Though Jim had an public career, we were a private family until we started sharing Hunter with therapists and caregivers. Everyone gained – Hunter, them, and us. Our girls never saw Hunter as a child with special needs. He was who he was, and they saw beyond the special needs to the person inside.

How did being Hunter’s mom change you? How did he change your family?

God used our one and only son to bring us to his one and only Son. Everything fell into place after that. Hunter had to have everything brought close to him so he could experience it. He taught me to be patient, to stop and be still and take in God’s creation. Most people don’t pay attention to those things or to anything God shows us. So Hunter opened our lives to the gift of life, to the gift of breath. I also learned to hold plans loosely because plans change quickly with a child who has special needs. Hunter taught me how temporary our lives are, how we are being prepared for eternity. He also taught us not to be afraid of death and suffering, but to trust God’s sovereignty because all suffering reveals God’s greater glory.

Jim learned a great deal, too. He recognizes he is not in control. Jim’s a natural leader, so surrendering control wasn’t easy. He now leads from the heart of God. He’s always had a great deal of compassion, but he’s compassionate in a different way now. He’s much more thankful for people, mindful what volunteers give, and appreciative of people.

Our daughters, Erin and Camyrn, learned to be humble and compassionate. They see beyond material things.

Who’s been your greatest support other than God?

My mother. We came to faith together. Her relationship with Hunter was willing, generous, and loving. She’s been an amazing example for me and our daughters. Erin once said, “I love Granny as much as I love you, Mom.” Our girls see her love poured into their lives.

What was the best piece of advice you were given when Hunter was with you?

After we received the diagnosis, my Uncle Mark visited. He said, “Jill, you’ll never know what real love is until you know love through his Son.” I didn’t understand what he meant then, but his words made me want to know. That’s when I started to seek after God.

What encouragement do you have for parents of kids with special needs?

Trust that God’s grace is sufficient in both your darkest valley and your greatest triumph, so persevere. This isn’t the end of the story. The story culminates in no more tears or suffering. Because we know what’s coming, we have hope in the moment.

Share Your Thoughts

Thank you, Jill, for sharing your journey with us. Did her words touch you? Encourage you? Inspire you? If so, leave a comment to encourage Jill. And come back tomorrow to learn about how her family continues to advocate for children with special needs.

Jolene

Welcome back to Part 2 of the DifferentDream.com series about time management. In Part 1, guest blogger Melissa Gamble shared her three best time management tips. In this installment, guest blogger Amy Stout shares some of her strategies. Amy says it’s easy to keep herself organized, but things are trickier for her daughter Kylie, who experiences autism. Amy finds organization, routine, and proper expectations are keys to managing time and a child with autism. That said, here are five strategies Amy uses.

Strategy 1: www.cozi.com

Amy uses www.cozi.com to organize schedules of 2 respite providers and 7 respite caregivers who service her family. Cozi allows her to color code each one of them, put their specific information in her calendar, set up repeating appointments and also send them email or text reminders a few days/hours in advance of their work schedule!  It is awesome!!

Strategy 2: Routine, Routine, Routine

If Kylie’s routine – remember routine is so important to kids with special needs -  has to change or if Amy’s introducing something new, then she utilize a schedule. For an example, look at the x-ray example Amy included in this previous guest post. Amy says social stories can also be applied to this scenario.

Strategy 3: Remain Flexible

Amy tries to keep a proper mindset regarding flexibility. She doesn’t consider her own expectations as set in stone. Instead, her daughter is the most important priority.  If she cant handle what is required to complete Amy’s to do list for the day then that item gets moved to a new day.  (Example: If Amy need to pick up a few groceries but the lights and sounds in the store are really bothering Kylie that day, then Amy doesn’t go. Nothing is more important than her daughter’s comfort.)

Strategy 4: Work When the Kids Sleep

Amy does a lot after Kylie goes to bed and before she wakes up.  Amy calls them her golden hours.

Strategy 5: Multitask

Amy multitasks as much as she can.  She never just watches TV.  Amy will provide examples of how she multitasks, along with five more strategies she employs,  in the next post in this series. In the meantime, you can read more time savers at Amy’s blog, www.histreasuredprincess.blogspot.com.

Share Your Time Management Strategies

Now it’s your turn to share your time management strategies. Or leave a comment about which one of Amy’s tips you’re going to try or how you’ll modify it for your situation. Rest assured, your idea will help other parents trying to organize their time without losing their minds!

Jolene

Part 1
Part 3
Part 4
Part 5

When I read Cheaper By the Dozen in junior high, I totally identified with the father’s desire to organize his saintly wife and children into an efficient, time-saving machine. However, he had much more success with his 12 kids than I ever did with my 2, but my interest in time management never waned. To this day, I love to organize and write to do lists. If it wasn’t such a waste of time, I’d spend hours in the planner aisle at Staples or searching for templates on line.

From Day Dreamer to Day Planner

My sister and brother find my transformation from day dreamer to day planner hard to believe. Of course, they remember me as the middle sibling with her nose constantly in a book with no idea of time or place, perpetually late, and very disorganized. Their jaws dropped when they heard I presented a time management workshop for parents of kids with special needs at the Accessibility Summit a couple weeks ago.

If I wasn’t aware of how the transformation took place, my jaw would be dropping, too. But I know that God placed several mentors into my life who showed me how to become organized. One was my best friend Jane, who moved to town the summer before we were freshman in high school. She taught me to complete worksheets on time, organize and turn them in, and to complete read assignments before class began. (Bless you, dear Jane!) Other mentors were the head of the nursing home kitchen where I worked as a dietary aid in high school and college, the teacher who supervised me during student teaching, and several other teaching colleagues.

Special Needs Organizational Mentors

When I began writing about special needs a few years ago, many of the parents interviewed for A Different Dream for My Child and Different Dream Parenting became mentors, too. They shared amazing ideas for managing life with kids who have special needs. Many of them are now guest bloggers here at DifferentDream.com. So when it came time to prepare for the workshop at the Accessibility Summit, naturally, I asked them to share their time management tips. Their tips were so good, I decided to pass them along to you as part of a time management series.

Without wasting any more time, let’s get started!

Melissa Gamble’s Time Saving Tips

Melissa and her husband Brant are parents of one daughter Ginny. (To read Melissa’s bio, visit the guest blogger page and scroll down.) She gives the following 3 tips:

1. Weekly Calendar Time: Schedule a weekly calendar time to discuss the upcoming week’s events, appointments, etc. (We usually done on Sunday night before bed.) We also have a shared Google Calendar* that we sync to our phones to keep track of appointments and other things.
2. Make Lists: List making is crucial to getting stuff done. I carry a large spiral notebook with me everywhere. Without a list nothing gets done for me.  I try to keep a long term list, medium term, and immediate list in this spiral notebook.
3. Meal Planning:  We couldn’t survive without it.  I do it once a month. This helps alleviate multiple trips to the store.

*Jolene’s husband seconds the Google Calendar idea. He says the calendar/phone options keep him organized.

Share Your Time Management Tips

Thanks, Melissa, for sharing your time management tips. If one of those tips solves a problem for you, leave a comment about how it helped. And please, leave a comment with your best time management tip if you like. And come back tomorrow for tips from another guest blogger, Amy Stout.

See you then,
Jolene

Part 2
Part 3
Part 4
Part 5