Caring and Me

 
Presenting a Workshop to Lutheran Women about caregiving, Journey With Jeff: Inspiration for Caregivers of People With Special Needs, naturally came into play. The person writing the review of my Workshop reported: "Sybil explained how her experience as a caregiver of a developmentally disabled son has shown her the importance of support for caregivers. She also shared with us several stories from "Chicken Soup for the Caregiver's Soul." Points she made that can help the caregiver included: 1. Laughter can change things - look for the silver lining; 2. Respect the dignity of the person - treat an adult as an adult, not a child; 3. Comfort for caregivers can be found in 2 Corinthians l:3 and 4; 4. Ask for help - others may want to help, but don't know what you need; 5. Find a friend who is willing to listen to you, or join a support group where you can receive encouragemnet from others; 6. Take care of yourself - you are very important to the person you care for. Since many people attending this workshop were, or had been caregivers, there was a lot of discussion and sharing of caregiving experiences based on the above points. Sybil suggested several resources caregivers might find helpful. They included "Chicken Soup for the Caregiver's Soul," and "Chicken Soup for Children with Special Needs." These books can be found in most bookstores. Sybil's book, "Journey With Jeff," is available on Amazon.com, or, along with a 5CD copy, can be ordered from her e-mail address, rsreisch@frontiernet.net." (Photo is of Lutheran Women convention table.)

Movin' On (Conclusion)

Sometimes I even forgot about Jeff...a thought of him would surprise me as I passed his old room. Guilt! Guilt! How could I forget my own child? I had to ask God to forgive me for trying to be "Super Mom!" I was acting as if I should be able to handle this major change in our lives with no trouble at all! My own free time was filling up with new activities. Now I could be on the Lutheran Church Women's Board. I went to a counselor for help with this major change in our lives. She said I was like a kid let loose in a candy store -- I wanted it all -- now! After four months at MDC, Jeff moved into the Lettington Drive Residence. More caring people continued moving in and out of our lives, surprising us with their capabilities and availability. Jeff tested the staff as they encouraged his independence. He didn't want to do all that work around his house. He wanted to play his records up in his room. "I want to come home, Mom." I shook my head, choked up. The final time he asked, he said, "I want to go home, Mom...Tough?" Where had he heard that response? From me? From the staff? Lifetime Assistance Inc (LAI) opened a Residence in Brockport. Five years ago in August Jeff became part of the family of ten. Now he was closer to home! People in Jeff's residence go out to so many activities together! They go to the Ice-Capades, circuses, magic shows, games, movies, parties, picnics, out to dinner...I'm jealous! Several people come to the Seeds Group from the LAI Residence. We get to see Jeff there at least twice a month. And he and I share a whole week at Camp Joy. We have him home for a few days at holiday times. The staff help him get to our church several Sunday mornings. We see him at LAI parties and picnics and games. It's good to have him come home, and it's good to see him go. We stay on top of things with the staff -- ask questions, help out. We're a team...with a fierce detrmination for Jeff. Leaving home is hard all the way around...But it's pure joy to see how much these young men CAN do in God's world. Just watch, my fellow-parents! You'll see!~~~ (Journey With Jeff: Inspiration for Caregivers of People with Special Needsis available on Amazon.com. Note their descriptions and reviews.)

Movin' On (Continued)

 
We were proud, too, eighteen months after beginnng these respite weekends when Jeff received an award at BOCES for gaining three years of social growth...in one! Teachers and social workers, advocates and stff worked hard to understand Jeff's needs and to meet them. Our communication was open, honest, and often. Although he balked at going to the residence, once there, he didn't want to leave. I felt guilty when we made him go...But I knew Jeff would become much more independent if he didn't have his mother to make his sandwiches for him! When Jeff's seizures grew worse and more often, the uneasy staff indicated that Monroe Developmental Center was a better set-up to handle Jeff's situation. I had difficulty even saying "institution." Such a repulsive, jarring word. "Center" tasted better...gave more hope, more courage. Bob said we'd really done all we could for our eighteen-year-old. Jeff came back from his MDC respite weekend a happy person, asking to go back again right after school the next day. On the Sunday bfore Jeff moved into the Center, his sister baked a cake to share with our congregation. "Movin' On" was emblazoned across the top. I couldn't believe how joyfully Jeff went to live at MDC! Bob held out his hand and shook Jeff's hand. "Well, son," he said, "Goodbye. We'll be seeing you." A week later Bob confided that when it was time to leave Jeff...for good...he wondered if he'd lose control. Such an adult exchange of good-byes hid the depth of pain. A dozen professionals came for Jeff's 30-day-evaluation at MDC. We felt overwhelmed and excited with this supportive team...all these people were working for Jeff! Bob and I surprised Jeff after the 30-day-evaluation at the Center. He was playing his records, reluctant to come out for a hug. But he did. Then he said, "You and Dad...Back home!" Rejected! This visit seemed to complete the break from home. We both laughed, but I started to cry as the door shut behind us. No tears from Jeff...tears all week from me. I felt cheated, because I was no longer in control. Feelings! They're neither good nor bad, right? They just...are. (To be concluded.)

Movin' On

 
An excerpt from Journey With Jeff; Inspiration for Caregivers of People with Special Needs; originally written to a family whose son was waiting to enter a community residence.~~~My beautiful fellow-parents, your son is ready, too, as mine was a little while ago, to leave home and live in a residence. A natural thing for a young man to do, right? Sure, if he isn't developmentally disabled! But wait a minute....No matter what goes on between the ears of our kids, they have the same needs and feelings of every person...to be loved, to be needed, to be all they're capable of being! I remember, and I relive the trauma with you...All the questions whirling around inside your head...What if he gets sick at the residence, or angry, or worried? So many of the staff are so young! How will they handle him? Will they understand him? Will he adjust quickly? No one can care for him like his own parents! Inside, you know this is for his greatest good! You know this is for your geatest good! His independence...Your independence. Thank God it's a process which takes time! I don't think I could have let him go if Jeff had left in one fell-swoop! We had to feel need first - the difficulty of handling him, the difficulty of finding babysitters, my fear of burning out from sheer exhaustion. A workshop at MDC offered us respite weekends -- shared care! It was tough driving away, leaving him at the Culver Road Residence. I left a huge chunk of myself there too. Time and time again I hollered for help from the Lord! And the help God sent was in the form of people...many, many people. People such as Joan Van de Wall, who came to the residence to pick up Jeff for church and Sunday school...and, eventually, the Seed Group, and then a confirmation class. One Pentecost we celebrated something we never dreamed could happen...Ecstatic tears ran down our faces as Jeff plus three other developmentally disabled young men were confirmed! We were proud, too, eighteen months after beginning these respite weekends when Jeff received an award at BOCES for gaining three years of social growth...in one! (To be continued...)

Be Encouraged!!

The grin on Jeff's four-year-old face encourages everyone who picks up "Journey With Jeff; Inspiration for Caregivers of People with Special Needs." Some read the book in one day. Some use it in their daily quiet time with God. In April, one of the women I met at a Lutheran Women's Retreat near New York City bought a copy. Recently, she sent me this note: "On September 8th when I presented your book to a group of ten Lutheran ladies, I told them how this book held my interest. I wanted to share this with them, not only for Jeff, but for the love of two devoted parents. Your struggle of day to day caring, your deep faith in Jesus Christ, and your unconditional love for him gave them a better insight into the book. Also, our church has a Reading Group that meets once a month. They may consider reading this book as a joint venture.~~~ At our Upstate NY Lutheran Women's convention this past weekend a friend of mine who lives in Oswego, NY -- Snow Country! -- said she was planning to present "Journey With Jeff" to her women's group this year. As I have presented the book to women's groups, it is amazing to find how many of them grew up knowing someone, or who know someone now who has a child with special needs. This book was written to encourage caregivers,...so they know they are not alone.

The Value of Family Love

Emphasis on parenting for children with special needs came from another direction today. This author received a comment on my blog post, "Special Needs Children/Music" from a young lady who wrote: "Family love, to me, is the most valuable thing you have in your life. If you didn't have your family, you wouldn't go anywhere. When you were down, they were there for you. When you needed something they tried to make that happen. When you think you don't have a family, you do. All you need to do is just give them a little call and they will be there for you. I got kicked out of the house when I was 18 and I had nowhere to go. I was around a wrong crowd and got into drugs. My addiction to meth was so bad, I nearly died. I realized that my life wasn't going anywhere and I needed help. The first people I called and the only people I called was my mom and dad. They were very happy to help me and got me into a drug rehab program. I am currently on the program and I can already tell that things are getting back to normal. I'm getting my life back, and most important I'm getting my family back." What a turn-around this young woman has made! She is thankful for her family's support and encouragement. May she Keep on Keepin' On, as she becomes all that God has created her to be!!