Tag Archives: special needs children

Three Strategies for a Smooth IEP Meeting

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“Ask, and it will be given you; search, and you will find; knock, and the door will be opened for you.” (Matthew 7:7 NRS)

Now that school is well-underway, some of us are in the midst of follow up IEP meetings (Individualized Education Program) to adjust education plans. A new school year may mean it’s time to update goals now that your child is established in a routine. One of the most frequent prayer requests I get is for IEP meetings.  How can parents reduce the anxiety level when everyone sits down around that table?

  1. Know your rights. Being informed helps instill a sense of preparation. Check out wrightslaw.com for information about special education rights.  In particular, their IEP basics tab here is a good place to start.
  2. Understand your own goals. What are your expectations? Are they reasonable? How will you be part of the process? Looking back at my own IEP meetings in early elementary school, I think I had in the back of my mind that the school’s interventions would somehow make up all of the deficits in my child’s development.  I think that came, in part, from the term “developmental delay.” It left me with the expectation that someday he would catch up all the way across the board. That unreasonable expectation added to my sense of anxiety when that goal remained unachievable year after year.
  3. Bring grace to the process, and maybe a few goodies. Teachers and administrators often end up with IEPs scheduled over break time. Light refreshments are often a welcome addition and set a good tone for the meeting. A positive attitude goes a really long way in smoothing out communication. It is possible to advocate by way of appreciation rather than anger. That philosophy worked well for me. Every six-week grading period I dropped off a note or small treat to each person who worked with my child letting them know how much I appreciated their efforts.

It’s great knowing that our children go to school and are taught by people who have chosen the profession of teaching. They have gifts and talents for what they do and they genuinely care about young people or they would have chosen another profession. They are experts in what they do, and the IEP helps them learn to be an expert in our children’s unique requirements. Sometimes neither side of the table is exactly sure what is needed for a particular child, especially at first. Parent and staff alike can be on a steep learning curve in discerning the best way to help each child with their education goals. Understanding that education is a team effort with many players goes a long way in creating the right plan.

God of Peace, help there to be peace throughout the IEP process. Calm the fears of parents, reduce the anxiety of teachers and administrators. Let your glory and gifts shine through in the process of helping to equip children to grow to be the best prepared and most content versions of themselves.  Place love of children at the center of the hopes and plans of all who gather around the IEP table. Amen

Rev Doc Lorna

 

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Blessed Beyond Measure

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I really stirred the pot with my Tuesday morning special needs parent support group, but I was not at all surprised. I brought up that awkward conversation we’ve all had with complete strangers.  You know the one.  They notice something different in our child’s behavior or abilities or appearance. They look for something to say and it generally starts with, “You must be a really special parent because…”

After the laughter and nodding heads subsided came the resounding cry, “We need a list of one-liners!” The humor soon gave way to transparency.

  • No, I’m not. I’m just holding it together one day after another and, by the way, I have no idea what I’m doing.
  • If you think I have the super hero power of patience, you are wrong!
  • Neither my child nor I are angels from heaven. We are real human beings with all the faults and challenges that come with that, and then some.

Looking for an energizing topic? Nailed it!   What is it about that statement that opens Pandora’s Box and lets it all tumble out?

Maybe it’s because that statement highlights a difference. Maybe it shines a spotlight on us at our hardest moment. Maybe it pokes us where we are most vulnerable, in that tender place between grief and acceptance.

Then came the reasonable voice from that mom who is so quiet and insightful, “You know, maybe we shouldn’t react that way.  They are just trying to connect. They are trying to be helpful. Maybe what we need instead of good comebacks is a good measure of grace.”

“Forgive, and you will be forgiven; give, and it will be given to you. A good measure, pressed down, shaken together, running over, will be put into your lap; for the measure you give will be the measure you get back.” (Luke 6:37-38 NRS)

Jesus taught in an agrarian culture that lacked standardized weights. When buying in the market place sometimes the measure you got was generous, other times the buyer left feeling cheated. A good measure is overly generous, abundant, and indulgent even. That is the grace that God offers to us.  It is so much more than we deserve, filled with understanding for when we fall short. With God’s grace we are blessed beyond measure.

How generous is my measure?  Truth be told, some days it’s more generous than others. We all have growing edges when it comes to grace.

Gracious God,  We thank you for the grace that you offer to us so freely. Help us to see the world through your eyes. Thank you for fresh opportunities to try again. Amen

Rev Doc Lorna

Photo “Corn-Grain” courtesy of stock.tookapic.com via Pexels

From Desolation to Consolation

 

Bluebonnets by Vikki Yost

The last six months has introduced me to a whole other side of disability ministry. It all began with a phone call my mother received within 15 minutes of my arrival for Christmas vacation.  My son hurried down the hall, “Grandma needs you.”

Hands filled with items from my suitcase, I didn’t bother looking up. “Thanks, let her know I’ll be there in a few minutes.”

“You better go now.  She’s crying.”

Thus began the journey with what we now know to be terminal cancer and my time in desolation. It is all too familiar territory. Diagnosis can be devastating for the caregiver whether for a child or for a parent. There is a relief in knowing what it is, finally, even when the news is not good. And there is grief.  Lots of grief. That process muted my voice to the parents whom I try to support.

Dr. Jack Levinson spoke at a clergy breakfast I attended and offered the keys to unlock where I have been trapped. “When in desolation, remember consolation. When in consolation, remember desolation.” My ministry has been one of remembering desolation and offering hope to parents. A voice of experience saying, “Yes, I have been there too. You are going to be alright. More than alright. You can thrive right where you have planted.”

We all move between the spaces of desolation and consolation. Some call it peaks and valleys. How do we breathe, how do we function, whether in the middle, bottom or top?

The key is faith.  In the story of Job, we see a person caught in extreme desolation. He had lost everything, family, wealth, status, health. Even his friends abandoned him, save for a few. (Sound familiar?) His truest friends came and sat with him in the ashes, for a time in silence, sharing his pain. Once they spoke up they didn’t always have the most helpful things to say, but don’t we all fumble for the right words at times?  Their loyalty was a gift in the hardest of times. Job kept the faith despite his hardships and he came out on the other side stronger for it.

In a way, I think the experience of Job helps explain the bond between parents on the journey with special needs.  Our stories are all different, as unique as our children, yet we know at times a sense of desolation. Loss. Grief. But those are balanced with joy of new-found abilities, hope in a future not yet seen, and the peace that surpasses all understanding even in the midst of chaos. The way in which parents reach out to each other offering support and encouragement to one another pours back and forth that cup of consolation, filling in all of the cracks, mending and making us stronger.

When in desolation, remember consolation.

I received a four word text from a friend. I knew instantly that she, too, was in desolation. I immediately  called and shared a long, heart-felt conversation.  Why? As I read her message I told myself, “Remember consolation.” It turns out consolation makes the desolation not quite as bad.

I waited patiently for the LORD; he inclined to me and heard my cry. He drew me up from the desolate pit, out of the miry bog, and set my feet upon a rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. (Psalm 40:1-3 NRS)

Consoling God, Like Job, we praise you in good times and in bad, for you are forever faithful. We thank you for those in our lives who remember consolation. Keep us mindful to return the favor. Amen

Rev Doc Lorna

Image “Bluebonnets” courtesy of Vikki Yost

Dr. Jack Levinson is William Joseph Ambrose Power Professor of Biblical Hebrew and Old Testament Interpretation at Perkins School of Theology and author of several books, including his most recent, 40 Days with the Holy Spirit.

Review: Every Child Welcome

Philo Weatherbee

Last week I shared with my readers an interview with Jolene Philo, co-author with Katie Wetherbee of the new book Every Child Welcome: A Ministry Handbook for Including Kids with Special Needs. This truly is a wonderful new resource for any children’s ministry team that wants to create an inclusive welcome to families with special needs, while at the same time equipping ministry leaders to be confident in their ability open the doors to all of God’s children.

Like expert guides, Jolene Philo and Katie Wetherbee gently lead the reader along the pathway to creating an inclusive ministry for children. From casting a vision for ministry all the way down to detailed strategies in the classroom, Every Child Welcome sets out a clear and easy to follow process for staff and volunteers alike.  The writing is clear, accessible and engaging with years of expertise in the field apparent on every page.  Any church with a goal to welcome all children and their families will be blessed by the abundance of wisdom contained within the pages.

Set in the metaphor of receiving guests for a dinner party, the authors create a comprehensive plan for welcoming children. Just as any good meal begins with planning and preparation, so too does creating an inclusive children’s ministry. Step by step, staff and volunteers are prepared with thoughtful consideration of how best to receive children by creating welcoming space and activities. With a clear understanding that not every volunteer has a background in special education, nor even in teaching, Philo and Wetherbee provide practical advice that is clear and concise. Their suggestions are both creative and adaptable to a variety of settings. This is a “go to” resource that I imagine children’s ministry teams referring to again and again.

Chapter topics include all parts needed for an inclusive welcome: preparing the space, preparing the children to learn, teaching the Bible, activities to enhance learning, ideas for holidays, and more. In addition to offering multiple strategies in each chapter, there are also suggested resources for children’s ministry teams who want to learn more. Readers can also connect to the author’s blogs for ongoing articles and tips on creating an inclusive ministry.

In other news…

I recently shared the story of Elizabeth who is new to long distance running and training to run the New York City Marathon this November.  I’m happy to let you know training is going well and she has already conquered a 16 mile long-run in the sweltering Houston heat and humidity. She is on target to be ready to cover 26.2 in November.  Also, she has already raised over $7,000 for Achilles International in honor of her children. And, I saved the best for last, her children with a rare genetic mitochondrial disorder are responding well to their new treatment and reaching new devlopmental milestones that used to seem impossible.  You can read more about Elizabeth’s inspiring story here: http://bit.ly/1I5odhg.

Gracious God, thank you for the gift of Jolene and Katie who inspire and equip others to reach out to families with special needs.  Guide ministry leaders to encourage their teams to create ways to include all children who come to be taught by them and to know you. Continue to guide and bless Elizabeth and her whole family on their journey of self-discovery of new abilities being revealed every member of the household. Amen

Blessings,

Rev Doc Lorna

Back-to-School Prayer

Little Boy Holding a Whiteboard by photostock

Here in Texas it is the first day of school. I’m thinking of all the parents and students who are feeling a bit anxious today. Transitions are hard for most, but especially so when for children with developmental differences. One friend is sending her son off for his first day of school ever. Another friend just sent a photo of her son on his first day of middle school and it reminded me of my anxious nerves when that was my son making those big transitions.

Years ago as I met with his helping teacher the week before school started she asked, “Do you just sit home and worry about him all day?”

I tried to shrug it off. “Oh no! I have part-time job I go to at the church while he is at school.”

She looked skeptical.  She knew the truth… that I simply went to work and worried about him there rather than at home.

Was there ever a perfect first day of school? No. Not at our house.  But we all made it home at the end of the day and sorted out the new routine.  Day by day it got better.  So much of that worry was simply a waste of energy.  I probably contributed to making my son yet more anxious.  Ouch!  That is a painful realization.

Jesus offers valuable advice about wasted effort of worry

And can any of you by worrying add a single hour to your span of life? If then you are not able to do so small a thing as that, why do you worry about the rest? Consider the lilies, how they grow: they neither toil nor spin; yet I tell you, even Solomon in all his glory was not clothed like one of these.
(Luke 12:25-27 NRS)

Great advice, but I know it is hard to follow at times. And so I offer this prayer for all the folks feeling anxious about back-to-school.

Nirturing God, grant peace to those who are anxious, big people and little people alike. Bless teachers and thank you for giving them the gifts of nurture, creativity and patience.  Guide them in uderstanding and welcoming students who are unique. As parents we want good things for our children and want to protect them. Help us to let go of the worry we feel at times of transition and trust in what you have in store in the future. Amen

Rev Doc Lorna

Photo: “Little Boy Holding a Whiteboard” by photostock courtesy of FreeDigitalPhoto.net

Need Project Interview

Need Project Logo

Last week I had the opportunity to talk to Bob West at Need Project, an organization devoted to supporting families with special needs children and adults.  Their mission: healthy families and healthy children through the creation of pracitcal resources and support for parents of special needs children.

Bob heard about my new book, Special Needs Parenting: From Coping to Thriving, coming out March 2015 and interviewed me for thier monthly podcast. Click the link below to hear the full interview:

Need Project Interview

A Bag of Leaves and 13.1 Miles: Piece of Cake!

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“Let us run with perseverance the race that is set before us.” (Hebrews 12:1 NRSV)

Leaves drop late here in Texas and raking under the red oak on my front lawn is a regular Saturday activity for me lately.  Recently my neighbor called to me from across the street as I worked, “Lorna, did you run that half marathon downtown today?”

Rake. Rake. Rake. “Yes.”

“And you are out here raking leaves?”

Rake. Rake. Rake. “Seems like as good a time as any.”

“Aren’t you tired?”

Rake. Rake. Rake. “Kind of, but it needs to be done.”

Shaking his head as he walks away, “I wish I could find that motivation.”

Running 13.1 miles and raking a bag of leaves isn’t hard.  Coping with autism induced emotional meltdowns in public, now that is hard.  Teaching handwriting to a child with dysgraphia, now that is hard. Getting wheelchairs in and out of stores, now that is hard. Facing a long summer without a single playdate or birthday invitation, now that is hard. Enduring the unwelcome stares of strangers, now that is hard.

As parents, of course we get tired.  Yet we find the motivation because it needs to be done.  In comparison, a bag of leaves and 13.1 miles is a piece of cake!

Enduring God, Give us strength when we are tired, motivation when we want to stop, and hope in you in all things. Amen

Photo: By David Goehring (Flickr: Fall Labors) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons

Review: The Caregiver’s Notebook by Jolene Philo

Caregiver's Notebook

I want to let my readers know about a wonderful new resource that was published in November.  Jolene Philo’s new book The Caregiver’s Notebook provides a convenient way to organize in one place information that is often needed when coordinating multiple therapies and doctor appointments.  This is a great resource for folks trying to bring some organization to medical information. This handy binder has multiple tabs, including:

  • Calendar
  • Contacts
  • Medical History
  • Insurance
  • Legal Documents
  • Bible Reading Guide
  • Prayer Guide

This resource offers a great way to organize at your fingertips much information that is needed over and over again when coping with medical issues.  The Bible reading plan and prayer guide are very handy when spending many hours in waiting rooms and hospitals. The convenience of having a history of medical tests, plus current and previous medications, seems invaluable whether going to the hospital in the midst of an emergency or making a first office visit to a new physician or therapist.  In addition to being a great resource for caring for a child with special needs, I can see ways this book would also be useful in caring for aging parents or for anyone going through a medical crisis such as cancer. The Caregiver’s Notebook is well organized, thoughtfully laid out and beautifully presented in a durable hardcover spiral book.

About the author: Jolene is a well known and highly regarded expert in the special needs community. She speaks frequently at special needs and foster care conferences around the country and conducts special needs ministry training workshops for churches. Jolene Philo is the daughter of a disabled father, and she parented a child with special needs. She’s a former educator with 25 years of public school experience. Her books related to special needs include the Different Dream series and The Caregiver’s Notebook. Her blog, www.DifferentDream.com, offers practical resources and spiritual encouragement for caregivers. You can also find a video series on her site in which she demonstrates how to use The Caregiver’s Notebook. The link to the first entry is:  http://www.differentdream.com/2014/11/caregivers-notebook-vlog-series-how-to-use-it/

 Jolene

Jolene and her husband Hiram live in Boone. They are parents of two married children and grandparents to one adorable toddler, with two more babies on the way. You can connect with Jolene on Facebook (@A Different Dream for My Child), (Twitter( @jolenephilo),
Pinterest (JolenePhilo), LinkedIn ( Jolene Philo), and at her websites, www.DifferentDream.com and www.JolenePhilo.com.

 

Come Away to a Quiet Place

Michelle Serving Ice Cream Watermark

Then Jesus said, “Let’s go off by ourselves to a quiet place and rest awhile.” He said this because there were so many people coming and going that Jesus and his apostles didn’t even have time to eat. (Mark 6:31 NLT)

Have you ever been that busy? Busy like Jesus with so much going on that you don’t even have time to eat? I sometimes get to the end of the day so hungry. My husband asks, “Did you forget to eat again? How can you forget to eat?” “I don’t know. There was a lot to do and I just forgot.” Sometimes I don’t notice that the tank is empty until it is well past empty.

One of the greatest gifts in my life is the time that I get to spend with parents who are raising children with special needs. We learn so much from each other as we share stories about life with our kids and support each other through all kinds of challenges. As the holidays approach I found myself thinking, what can I give these parents? What do they need most?

What they need most is time away at a quiet place. They need their tanks filled. They need respite. They need to recharge their batteries before the hectic time of year with holidays, changed routines, and many more expectations that come with the season.

It wasn’t too hard to figure out what they need, but it took a bit more thinking to come up with how to give that gift. Then an amazing coincidence (also called a God sighting), a friend offered the use of her home in the country. It is one of those beautiful places like a picture postcard with rolling hills, trees older than my great-grandparents, and peaceful solitude that is so elusive in the city. What a welcome retreat!

We spent the day looking into ways to engage in spiritual, emotional and physical self-care. We took time for meditation, explored scripture, took the temperature of our emotions, and relaxed by the pool with some late afternoon yoga to burn off the ice cream our hostess surprised us with from the local creamery. It was a perfect day away and I was still giggly happy days later.

There is no shame in needing time away. Even Jesus took time away in a quiet place to rest. Perhaps that was the key to him and his disciples keeping up with so many obligations.  I know all of us who took the time for our mini-retreat are entering the busy holiday season with renewed energy, feeling peaceful and centered. My prayer for you this busy holiday season is that you too can carve out time for yourself for a few hours rest, finding peace to renew your soul. And if during your time of renewal you just happen to have your tank filled with a scoop or two of BlueBell peppermint ice cream that will just make it all the sweeter.

Holy God, I thank you for the way that you renew and refresh. Help us to remember in the midst of this season to find peace and nurture in you. Amen.

Photo “Ice Cream Time!” by Lorna Bradley

Home for the Holidays

Thanksgiving

Know that the LORD is God. It is he that made us, and we are his; we are his people, and the sheep of his pasture. Enter his gates with thanksgiving, and his courts with praise. Give thanks to him, bless his name. (Psalm 100:3-4 NRSV)

My favorite holiday is just a few days away and my son is coming home.  I can’t wait! I’ve been so excited I’ve gotten a bit carried away buying or making his favorite things to eat. One person cannot possibly eat that much. His dad and I may need to help.

This is the first year that Craig has traveled to be with us, another milestone in his growing independence. When he was young, holiday travel was full of challenges. It got so complicated that we stopped going to visit others.  It turns out airplanes fly BOTH directions and if others wanted to see us for the holidays it was easier for them to come to us than for us to go to them. They were welcome to come, but often did not. “Home for the Holidays” took on a new meaning as we madeit a tradition to stay home. Our holidays were much simpler than the ones I had when I grew up, but they were just right size and fit for Craig.  In time, they became the right size and fit for me too. I used to worry he was short-changed, but in hindsight I see that the way we celebrate was less-overwhelming, less hectic, less frustrating. Smaller and simpler isn’t less, smaller and simpler is a blessing.

Embrace simplicity this holiday season. Live in the moment and treasure making memories in simple pleasures. Enjoy the many blessings God has shared with you and your family.

Gracious God, thank you for how you have blessed my family. Sometimes I get so busy that I do not notice how truly blessed I am. In this season of giving thanks, let me most of all give thanks to you for all that you are all that you have done. Your love and abundance and blessing amazes me. Amen.

Photo “Home for the Holidays” by Lorna Bradley