Community Inspiration and Encouragement

Community inspiration and encouragement came early in Jeff's life, interlaced with those who tried to point out that Jeff might have special needs. I did not see it, and I did not want to hear it.~~~Helene and I were young together in our congregation, and she says she remembered me sitting in the back of the church with baby Jeff, and hearing his breathing, and being afraid he would choke. She admired the way I dealt with it, with seemingly calm courage. Actually, for about two years I was in deep denial.~~~Helene's husband, Ed, was a professional photographer. He took photos of Jeff, beginning at three months, through his fourth birthday. What a legacy! His photo of Jeff at four years made the cover of "Journey With Jeff: Inspiration for Caregivers of People With Special Needs."~~~This past Christmas Helene requested a copy of "Journey With Jeff." She wrote: "When I received your book I decided that from now on nothing gets done until I have finished!" Her conclusion: "Journey with Jeff is a heart-warming, heart-rending book. It portrays the devotion, frustration and courage demonstrated by parents and caregivers of special needs children. It also teaches parents of children who have other either mental/physical disabilities how to cope -- with the Lord's help. Even in the 60's the term mongoloid was a cruel definition. A professional never should have used that term. Retarded isn't any better. God bless you both for nurturing Jeff's heart and soul with love for his Lord. Bless you for keeping the faith in times of trial, and loving each other so much, so Jeff could thrive in that atmosphere. Bless you for letting us all know that Jesus is our Best Friend as well as our God who we can talk to just as we speak to our earthly friends. The format of "Journey With Jeff" is special. Appropriate quotes at chapter beginnings, and the prayers at the end. Jeff gives to all who read his story his love and caring through his dedicated parents who helped him achieve his full potential." Helene's words are an example of the kind of community support and inspiration the Lord sent to encourage us, to show us we were not alone.

Hope For Challenges of Children with Special Needs

Sharon Gibson has written, "The Seven Habits of Highly Effective Parents Raising Children with Special Needs." modified from Stephen Covey's, "Seven Habits of Highly Effective People." We strongly supported these Habits as parents of Jeff and Jennifer. They are intertwined within stories in "Journey With Jeff: Inspiration for Caregivers of People with Special Needs," written to encourage other parents, families and friends, so they'll not feel alone! Gibson writes about them on "About.com: Special Needs Children."~~~In short, these Seven Habits are: (1) Be proactive. Educate yourself. (2) Begin with the end in mind -- the next 10 minutes, the end of the day, 20 years down the road. (3) Put first things first. Your life doesn't need to be completely defined by your child's disorder. You are still a family. Don't forget other family members. (4) Think WIN/WIN. Help others understand how helping your child will help them. (5) Seek first to understand, then to be understood. You may need to educate, educate, educate. (6) Synergize -- Connect with other parents and families. You are not alone. (7) Sharpen the saw. Take care of yourself -- spiritually, mentally, physically and socially. Yes! YES! YES!!! Check these out in full on www.abaresources.com/familycorner/

A Caregiver with a Tail

A caregiver with a tail has been coming to our church services and activities for about four months now! KODA is an eight-month old sheepadoodle dog who is being trained to sniff out life-threatening allergies for his teen-age master, Tyler. The family has named him KODA, which is an anachronism for Kids Overcoming Deadly Allergies. Right now they are teaching Koda to "Search!", so that he can later find the foods that will harm Tyler. He will learn to react to each allergy with a different response. Koda loves playing ball with Tyler and his sister Becca, and this ball will be his reward when he finds the threatening foods for Tyler.~~~The important job of all parents is to prepare a child with special needs to be able to live on his own in the future. These days, when there is a party, his parents will make it a special point to put the foods Tyler can eat in a bowl especially for him. In this way, others helping themselves to the main bowls (ie. potato chips, cheese curls, taco chips, etc.) will not contaminate the bowls with dangerous food on their hands. He has his own food at school and at church. As Koda completes his training, he will help Tyler go through his high school years by sniffing out allergies, and if Tyler does have an attack Koda will pull his medication from his backpack and bring it to him. Therefore, Tyler can live a life at school, at college, at work without the constant worry about foods making him sick. How amazing new developments for children with special needs have become! (Photo is of Tyler and his dad putting Koda's working vest on him at church.)

Caregiver Finds "Welcome To Holland (Part 2)"

A parent of a child with special needs was searching for a story she had heard about landing in a country much different than where she had been heading. Someone sent her to a website quoting, "Welcome to Holland," by Emily Peri Kingsley, which I had used with her permission in "Journey With Jeff."~~~On the same website was Part2 of "Welcome to Holland," by Anonymous. I found this so profound, I'd like to share it with my readers.~~~"I have been to Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.~I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger - the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time.~I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends.~Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.~I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?~Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways, too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its tulips, windmills and Rembrandts.~I have come to love Holland and call it Home.~I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.~Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!" Thank you, Anonymous -- dear caregiver of special needs children -- for your enthusiasm and encouragement!!

Caregiver Newsletter AND Book Study

 
Sent "Journey With Jeff: Inspiration for Caregivers of People with Special Needs" off to Illinois this morning. It was sent in response to a request from a man for a review copy in order to include a few excerpts in their Parent Support newsletter. Now, THIS is the reason my book was written! Parent Support! I have no idea where this man learned about "Journey With Jeff," but this blog has been included on my Face Book page, plus I often respond to other blogs about children with special needs. So,...it's out there!!!~~~Another pastor friend has asked about acquiring copies of "Journey With Jeff" for their Book Study group to use in February. I am delighted that the story of our joys and challenges of living with a child with Down syndrome is finding its way to so many! The responses from my readers are extra special, and I look forward to every one!