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The Story of MUMS National Parent-to-Parent Network.

This is the story of the development of MUMS, a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality, or health condition. It is also the story of my life. As is often the case, life with a handicapped child opens new directions in a mother's life. My life took unexpected turns and led to the creation of an international organization to guide other parents faced with the unanticipated trajectory of parenting a child with special needs.

The mission of MUMS is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition. We have a database of over 25,500 families from 48 countries, including over 2,700 disorders, very rare syndromes, or undiagnosed conditions that can be matched. Parents are able to exchange valuable medical information, including the names of doctors, clinics, and medical resources or research programs. Families provide each other with emotional support. They are able to feel less alone and can reach out to each other in time of need. MUMS networks with other organizations that do matching, thus expanding the possibilities of finding a match. MUMS also connects parents with support groups dealing with their child's specific disability or assists them in forming a group. The original name of our group was Mothers United for Moral Support, Inc. We now use MUMS National Parent-to-Parent Network to better describe what we do and to be inclusive of our father and grandfather members. Our data base increased when we became the keeper of 10,000 family names from the National Parent-to-Parent Support and Information System, which was established via a short term federal grant.

Our international contacts increased when I met Shirley Wass from Parent-to-Parent of New Zealand at an international conference. She was so impressed with the list of disorders MUMS had matches for that she shared our information with the parent-to-parent groups in England. We now share information between families from countries all over the world. The Internet has vastly expanded our ability to help.

How Did it All Begin?

Ever since I was a child I dreamed about the day I would have a baby. In 1973, I was excited to find out I was really pregnant. It was even more exciting to share the pregnancy with two friends who attended La Maze classes with us. We were all due around the same time. As all of you, I assumed all would go well. I delivered first. The delivery was normal, only there was silence when Jessica was born. The doctor gave her mouth-to-mouth, she was pale and limp. Because of a slit in the umbilical cord, she was born in shock from loss of blood. She was whisked away to the neonatal intensive care unit in the hospital next door. The next day we were told she had "significant injury to the brain from lack of oxygen and uncontrollable seizures. If she lives, she'll be a vegetable." Was it selfish to want her to live? How could i want my baby to die? The horror of all the tubes ... the helplessness. Wi!il ever hold her before she dies? The denial ... She'll be all right. Friends calling ... What did you have? A girl, but ... The cards, the presents ... the pretended joy. The waiting. The fear when the phone rang or the doctor approached. We were surrounded by happy parents with healthy babies all around.

Finally the seizures stopped and Jessica improved. I could hold her and nurse her. She was going to make it! We took her home, but were offered no therapy and no help ... Wait and see how she turns out. We can't fix her. My friends' babies were born. All was well. They felt guilty. Our tragedy stole their joy, too.

At 6 months, Jessica was not developing like my friends' babies. They were starting to crawl; Jessica was stiff and screamed for hours. I asked her pediatrician for a referral to an infant stimulation program at the Cerebral Palsy Center. He was unfamiliar with it and said "No." At 8 months, I insisted and he agreed to let me try it (I was becoming assertive).

Help at last! Therapies to work on, feeding and carrying techniques to try, and most of all, I met other mothers with children like Jessica, some who were even worse. I was not alone! I felt such comfort talking to them. Comfort no one else was able to give me. Maybe they felt the same way. The therapist wanted me to start a support group. I wasn't ready.

Another Baby

When Jessica was 3 years old, I became pregnant again. This baby would make it all up to us. We would experience a "normal" baby. Labor started, we went to the hospital. "No heartbeat, go home, your labor stopped, the baby is dead. It probably has birth defects." Three endless days later, I delivered a son. He was dead; there were many birth defects "... possible Trisomy 13-15. It just happens." I got to hold him; it was comforting. The empty crib and new baby clothes waited for us at home, as well as the phone calls to deal with from friends and relatives.

Would we ever have a normal baby? That was the worst part. We went to Madison for genetic counseling and were given the okay to try again. "It was just a fluke. One in a million." (Years later it was found that the Bendectin I took for morning sickness was associated with the type of defects our baby had. It was removed from the market in 1983).

Twins !!

Six months later I was pregnant again. After 7 months and an ultrasound test, twins were diagnosed! My fear over-took my joy. Twins are high risk. I was already high risk. How could I handle three even if they were all right? At this point Jessica was 4 years old, diagnosed with severe cerebral palsy, would never walk or talk, but had a cute sense of humor and charming personality. She was very demanding and so bonded to me she cried whenever we were apart. I had to carry her around because all I had was an infant seat she had outgrown and a high chair she couldn't sit up in. I had no sitters that could handle her.

The twins were born by C-section only 2 weeks early. They were beautiful, healthy girls! We were overwhelmed with joy! It was like having triplets when I got home, with all the care Jessica needed. Jessica was not happy with the competition for her mom's previous undivided attention. I couldn't carry her around all the time. She had to lie on the floor. She began to crawl to the amazement of all the therapists! She grew to love her sisters and delighted in their progress.

Divorce

When Jessica was 8 years old, her father and I divorced. It was not because of her, but I do believe that a child with special needs or any difficulty can test the love a couple has for each other. The strong relationships get stronger, and the weak ones fail. Many times mothers take on the whole burden of care in an attempt to make life as normal as possible for the rest of the family. This only builds barriers in a relationship.

The MUMS Support Group Starts

When the twins were 2 years old, I decided I was ready to start a support group. The therapist who originally wanted me to start a group gave me the names of three mothers with children with cerebral palsy, and I invited them over to my house. We had so much in common, we were not lost for words. We decided to meet on a regular basis, and word of our little group spread. We originally thought it would be for mothers whose children had cerebral palsy, but when we met other mothers with children with other problems and no place to go, we opened it up to anyone. We had more in common than differences. We all had lost the perfect babies we had dreamed of having. We all had felt so alone, depressed, and frustrated with the lack of help. We shared the names of good doctors, equipment, services, and most of all the instant bond that only mothers of children that aren't "perfect" can have, the understanding friendship that we can only get from each other.

MUMS Grows into a National Parent-to-Parent Network

We discovered we had power, too. When a mother called us because she wanted to stay in her child's room at the hospital and was refused, we met with the administration as representatives of a group called MUMS. We were able to change the policy of the hospital, and this mom was able to stay with her 2-year-old, blind son until he came home. Another children's hospital had no parent's room on any of the floors. If parents wanted to leave the room so the child could sleep or so the parents could privately talk, they were told to go down to first floor cafeteria. Parents didn't want to be so far away from their children. We wrote about this problem in our MUMS newsletter and the hospital reversed its policy and created a parent's room on every floor!

Our mothers' group developed. We advocated for each other with the schools and wrote letters to legislators. We grew in strength and number. New mothers knew nothing about the services that we provided, so we began a newsletter to get information out to those who couldn't attend meetings.

Computerization and Expansion

When dessica got a computer, I was able to put all the names of the parents in our group from index cards into a data base and quickly match parents whose children had the same condition. This led to the present. Now MUMS receives referrals from all the state's major hospitals as well as national organizations such as the Alliance of Genetic Support Groups, National Organization for Rare Disorders, March of Dimes in New York, National Information Center for Children & Youth with Handicaps in Washington, DC as well as Parent-to-Parent groups in Georgia, Virginia, Oklahoma, New Mexico, Idaho, Florida, and New York. We began a clearinghouse for used medical equipment and supplies. The lending program was taken over by a local rehabilitation facility that received a grant to continue and expand this work.

I never dreamed MUMS would become this large, but it is so rewarding to help parents find matches for those rare disorders that even their doctors have never seen before. Support groups for these disorders are forming all over the country from matching these parents. Day time talk shows such as Maury Povich have showcased some of our family matches. Our national group has contacts in 48 other nations.

My Jessica

It was difficult to accept that Jessica was cognitively impaired. She has developed behavioral problems and autistic characteristics. The behavior problems are the hardest to deal with and my heart especially goes out to the parents of these children. We tend to blame ourselves more and get more criticism from others and less help when the disability is behaviorally related.

Jessica has learned to use a headstick to type and spell out messages. She operates a power chair that has given her more independence and a better feeling of self worth. She also has a speaking computer (liberator) so she can speak out loud. Jessica told me that she walks and talks in her dreams. How can I be sad when she has joy with all her limitations? When I talk to other parents, I can't take their pain away, but I can help make life a little easier for them. This has made it easier to help Jessica and has given me a direction for my life.

The Future

Jessica always had difficulty with swallowing and aspirated on occasions. She got worse as she got older and at 20 years old she had a gastrostomy tube placed to feed her directly into the stomach. Because she is now considered "medically fragile," she is no longer eligible for a group home. The adult day program she is in will not feed her through her tube and the sitters I hire to care for her have to be more trained. I don't know what the future holds for Jessie, but I do know that services are not there for her.

The trend is to close institutions and serve children in the community, but the rules and funding still are discriminatory. Many children are surviving with more and more severe disabilities and society must commit to quality care that spans the entire life cycle. I will continue to fight for services for all special children out there struggling and for those yet to be born.

MUMS STORIES

Three families, two from Wisconsin and one from California, were given the devastating news that their children would die by the age of 3 from infantile GM1 gangliosidosis, an extremely rare metabolic degenerative disease with no cure. MUMS connected the families with each other and told them about the Make-a-Wish Foundation for children with life-threatening conditions that grants wishes to children. The families became best of friends and the two Wisconsin families flew to meet the family in California. All three children have since died, but the families were able to support each other through-out these painful times. They remain in contact and are there to support new families in the MUMS network.

Kelly from Ohio wrote asking for a match for her son who has lethal asphyxiating thoracic dystrophy or Jeune Syndrome. She had been told that this was an extremely rare condition and that the few known cases had died by age 2 years from lung complications. The major symptom of the disorder is a narrow rib cage that does not expand as the child grows to accommodate the lungs. MUMS was able to give Kelly a list of other organizations to contact for medical information, sent her the medical information that MUMS had, and within 2 weeks sent her a parent match. We printed a letter in the MUMS newsletter and within a short time, Kelly was able to find eight other children with Jeune Syndrome. With MUMS' help, Kelly started a national support group for this rare condition. She produces a newsletter and has distributed updated medical information to doctors to replace the outdated information available to them when her son was born. She also found a surgeon in Philadelphia who has developed a procedure to place a shunt to expand the rib cage. Kelly flew to meet the mother she matched with and the two have become best friends, providing each other and others with support and information. Kelly's son Michael will be 11 years old in March!

The MUMS National Parent-to-Parent Network

MUMS National Parent-to-Parent Network; 150 Custer Court; Green Bay, WI 54301-1243; (877) 336-5333 (toll free); (920) 336-5333; (920) 339-0995 (Fax); E-mail: mums@netnet.net; Web: http://www.netnet.net/mums/

The annual newsletter subscription is $15 for parents and $25 for professionals. Matching service for parents is $5.00 (which can be waived upon request).
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Author:Gordon, Julie
Publication:Pediatric Nursing
Geographic Code:1USA
Date:May 1, 2001
Words:2553
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