Family Support and Encouragement

 
This past weekend bitter mixed with sweet as we celebrated my husband's sister Lois' "Giving Tree" life of 88 years, and as we realized the deep, empty hole now in our close family.~~~Jeff has always been welcomed in this huge family. The pebble of his 27 years on this earth, tossed into this family, has caused ripples in people's lives resulting in careers in special education for at least three or four members, and in several volunteer's hours. Caitlyn is in her Junior year in college, ready to do her Student Teaching in classes of students with special needs. Her nine year-old sister has Down syndrome and has been integrated into a third grade class. We're so pleased...amazed at her progress!~~~Our nephew, Mark has been working with people with developmental disabilities for many years. There are more and more discoveries of things the members of our family are doing with people with special needs. The folks in the photo above are only about half of the family who gathered for Lois' funeral. More are scattered around the country, with a number of them involved as caregivers of people with special needs. We're so proud of them!!

Caregivers in Batavia, NY

There were several caregivers in the audience when I made my presentation of "Journey With Jeff; Inspiration for Caregivers of People with Special Needs,"at the GO ARTS! evening program. Some had heard the broadcast on WBTA the previous Thursday with Joe Langen and me inviting everyone to come.~~~Some of the caregivers were both mothers and special education teachers. I was moved by their tears of empathy as I told the story of going from "Why us, Lord?!" when we discovered Jeff had Down syndrome, to "Where do we go from here?" then examples of all the people God sent to help during the years Jeff was growing up.~~~There were great comments and questions, such as, "How did your husband respond to Jeff's special needs?" (He believed his job was to be breadwinner, and that my mother's wisdom would get us through -- that was the way families operated in the 60's and 70's -- although he was very supportive in helping whenever I asked.) "How did your daughter, Jennifer handle the teasing, and the extra time spent with Jeff's special needs?" (She told them, "He's my brother!" because that's just the way it was, and she became very independent.) We talked about GUILT, and I read an excerpt titled, "Movin' On," a letter I'd written to other parents who were considering a Residence for their son. This covered guilt pretty well. Joe Langen suggested that I ask Jennifer how I could spend more time with her NOW. YES! That's a great idea, Joe!~~~By evening's end, a number of listeners had bought copies of "Journey With Jeff," plus the CDs of Jeff's story. One man told me he bought the CD so he could hear it again. "I have learning disabilities," he said, "but if I can hear things again I can absorb it, and once I have it, I don't lose it." I'm so glad Jeff and I could touch his life, plus some other lives. It was a wonderful evening with wonderful caregivers!!

Community Support at WBTA--Batavia,NY

Wanda Frank, WBTA Host, was a great encourager as I spoke about "Journey With Jeff; Inspiration for Caregivers of People With Special Needs," this morning. My writer buddy, Joe Langen was there too, to present this as a springboard for the GO ARTS program across the street next Tuesday evening. Wanda asked me about what Jeff was like as he grew (happy, busy, loving music, loving people;)what I said to people who stared or were negative ("Hi, this is Jeff. What's your name?" - he's a regular person;) what helped me as Jeff grew up(patient friends, teachers, and doctors, and reading as much as I could get my hands on;) when I decided to write this book (when a doctor told me "These children never learn to read. They never go to school. They never This. They never That;" and how I wrote the book (by bringing together Jeff's Progress Report I kept in the back of his photo album, and my Journaling when I felt challenged, or full of joy.) In the one minute left to sum up, I said, "I wrote this book to encourage caregivers of people with special needs, including the Sandwich Generation who care for aging parents as well as children. I wrote it so they will never feel as if they are all alone." I hope the people who heard the program on WBTA will want to hear more at the GO ART presentation in Batavia on Tuesday evening!!

Adopted Children with Down Syndrome

"The cover of your book about your son, Jeff has his picture on it when he was one or two, doesn't it?" asked the sales clerk when I checked on its progress at Alpha and Omega. "No, Jeff was four in that picture. He has Down Syndrome." The man's manner brightened immediately. "We have a lady who works in here who adopted two children with Down Syndrome, a girl and boy only four months apart. She wanted them to grow up together. She has six other children who do not have Down Syndrome. This is one special lady!!" He was enthusiastic to tell me he had invited them out to his home where they could ride horses, which they thoroughly enjoy. "I love to have them around. There are lots of smiles and hugs, and there is no pretending with them -- they are right up front!" We concluded that the love that children with Down syndrome give is an unconditional love. I remember Jeff often saying to the people in his Lifetime Assistance, Inc. residences "I love you!" Some would say to him, "Ah, Jeff, you say that all the time. You don't mean it." And Jeff would simply reply, "I love you!" and leave it at that. This conversation in the store was a great blessing for me.

Music Eases Special Needs

I don't cry as much anymore remembering Jeff's death, but I cried today. We celebrated the life of my friend's daughter, Kathy who died after four and a half years of battling cancer. People came and came and came, as they did to Jeff's funeral. Music was a big part of Kathy's life. She used to play her guitar for a group of people with special needs at the SEEDS group which met every other week at her church. (Jeff loved going to his SEEDS group!) Her Memorial Service was full of the music she loved, and it comforted us who cried. Kathy's mom and I had served together on a Lutheran Women's Board years ago, and mutual thoughts of losing a child were felt in our moment of clasped hands on the way to communion. The music at Kathy's Memorial service eased our own special needs as caregivers, as well. Thank You, loving God! (Photo is of Jeff enjoying "making his own music.")

Respect for an Inherent Dignity

At a Lutheran Book Club discussion of "Journey With Jeff," one of the members experienced an "aHa Moment." She wrote, "Your book has made me more accepting of everyone just as God made them!" A new respect for the inborn dignity of all God's children was born! What an accomplishment, AND what a blessing this will be for everyone! She also said she "liked my format and found it easy to read -- each chapter a lesson in itself." She thanked me for putting my feelings "out there where hopefully we can all learn from them."~~~The presiding pastor added, "The discussion went really well. We talked about the style of writing, which we appreciated, especially the letters to God. We could picture Jeff, his struggles, the seizures and surprises, and talked at length about the time period that Jeff was alive. It was a great conversation that flowed well, and I encouraged everyone to send you an e-mail, or a letter, or to friend you on Face Book."~~~YES!~~~What a joy to know that eight Lutheran Book Club members joined together to read and discuss the story of our joys and challenges, and how God has blessed us and so many people through Jeff!

US Representatives Help Kids With Special Needs

The National Down Syndrome Congress reports that on March 3,2010, the Keeping All Students Safe Act (S.2860) passed the House of Representatives on a 262-153 vote! U.S. Representative Cathy McMorris-Rogers, mother of 3 year old Cole who has Down syndrome stated: "I am genuinely pleased by the House's bipartisan support for the Keeping All Students Safe in Schools Act. This critical piece of legislation confronts the unimaginable situation in schools across the country whereby some of our nation's most vulnerable children are treated in an inhumane and degrading manner. The thousands of incidents reported by the Government Accountability Office and others together with the piecemeal approach taken by the states demonstrates the need for federal guidance. I've been proud to work with many organizations and this is a victory for them. I thank Chairman Miller for his leadership and my colleagues for their support. Together, we work to ensure this bill is passed by the Senate." The focus now turns to the Senate and the intense effort that will be needed to pass the bill. Keep tuned, folks, we need to be aware of how to support, and be effective advocates for our children with special needs. Thank you!