PACER Center
952-838-9000
Champions for Children with Disabilities
Newsletters Navigation Menu
A Newsletter for Minnesota Families of Young Children with Disabilities
See the PDF version
of this newsletter.
Building support for families is vital
When a child is born with a disabilit, parents face complicated challenges, including where to find adequate support for their child and themselves.
Some families can count on help from extended family and long-time friends, but others discover they need to build a new support system. In either case, parents must define the support they want and need.
The Williams-Mersereau and the Kimlinger families, profiled below, have done that. They receive support from very different sources, but they address the task of finding support similarly: with creativity, honesty, and appreciation.
Miles's family
The Williams-Mersereau household is an active one—Curtis and Michelle have three young sons. Six-year-old Miles, the middle child, had spinal meningitis as an infant, resulting in multiple disabilities that include deaf-blindness and cerebral palsy.
Miles's communication difficulties and frustration lead to behavior challenges, so a familiar person must attend him in his waking hours. Curtis and Michelle are his primary caregivers, and Mary Jordheim, a neighbor who also has a six-year-old son, is their reliable and appreciated backup.
Mary and Michelle met two years ago when Curtis and Michelle moved to their South Minneapolis neighborhood. The women discovered that in addition to having children close in age, they share similar beliefs and values. A friendship blossomed. Now, Michelle and Mary do what all friends do—they share resources and support each other. Michelle helped Mary with her first garage sale, and Mary's husband, Steve, loaned Michelle computer equipment to help her use Internet resources. The families swap baby-sitting for their typical children.
A nurse, Mary is not intimidated by Miles' special needs, and she has offered to watch him, too.
Mary's ease with Miles is an exception, according to Michelle. "Sometimes it's hard for people, even family members, to cope with the child with special needs. But, what they can do is help with the other kids," said Michelle. "The only reason I have had time to myself is because Mary has taken my other two kids, especially on weekends when Miles is in respite care."
Mary is "on call" for emergencies. For example, she is designated to pick up Michelle's and Curtis's youngest son at day care, if his parents cannot. Her support also helped Michelle to return to college to complete a degree in social work.
Michelle said she believes some people may be afraid to help a family because they fear they will be overwhelmed. "The family doesn't need you all the time," she explained. "It just helps them to know that they could call you if they needed to," she continued.
They can rely on Mary for assistance, and that is a greatly appreciated relief for her and Curtis, Michelle said.
Ashley's and Amber's family
Tom and Lisa Kimlinger have two young daughters, Ashley and Amber. Both have disabilities. Eight-year-old Ashley has Down syndrome. Three-and-a-half-year old Amber was born with complications.
Eventually she was diagnosed with Lenz-Majewski Hyperostosis Syndrome, an extremely rare condition.
Amber spent her first three weeks in intensive care on oxygen and numerous medications.
While Amber was in the hospital, Tom or Lisa alternated spending the nights with her. Leslie and Gabe Giancola, Lisa's parents, stayed at the Kimlinger home with Ashley.
Lisa said she remembers how relieved she felt knowing that someone was caring for Ashley, not to mention helping with laundry and other household needs, such as grocery shopping. The grandparents also fielded a multitude of telephone calls from the Kimlinger's concerned friends.
Following the crisis at Amber's birth, the grandparents continued their dependable support. They need it, Lisa and Tom acknowledge. The first three years of Amber's life have been filled with medical appointments, therapies, surgeries, and uncertainty. While Amber has had a gastrostomy tube for most of her life, Lisa and Leslie recently discovered that Amber has severe food allergies. Now, to ensure Amber receives all of the nutrition necessary, Lisa must finely grind fruits, vegetables, and chicken to be administered through her gastrostomy tube every half hour. Lisa's parents and Tom's father Joe all feel comfortable helping with Amber's feedings and jump in to help whenever necessary. Other time-consuming demands include coordinating appointments among 20 therapists for both children.
Tom and Lisa's parents attend Individual Family Support Plan (IFSP) meetings, doctor appointments, and other activities with the Kimlingers. For example, when Tom and Lisa learned that Amber may lose much of her hearing and vision, they enrolled in sign language classes. Leslie and Gabe feel that communication is important to Amber, so they joined the class too.
The grandparents also share in happy times and traditions. Ashley will soon participate in a first communion ceremony at the family's church, and all the proud grandparents will attend.
Joe, Leslie and Gabe provide a sense of security to her family, said Lisa. They are reliable. Tom and Lisa know their parents will be there when they are needed, even in the middle of the night.
Tom once telephoned his father at 2 a.m. "I can call at any time, and he listens," Tom said. Lisa said she experiences the same kind of support from her parents. She and her mother telephone or see each other in person nearly daily.
As a break from their responsibilities at home, Tom and Lisa attend church and community activities. Being able to rely on child-care by the children's grandparents makes it possible, they said.
Joe, Leslie, and Gabe wouldn't have it any other way. Leslie repeats a lesson in support she learned from Gabe's mother. It is: "You are always a mother, no matter how old your children are."
For many families of children with disabilities, the adage may enjoy a twist: "No matter how old you are, you are your parents' child, and they are a source of support."
Can friends and relatives help your family?
When friends and relatives ask how they can help, it is sometimes difficult for families to come up with a precise list. Michelle, Tom, and Lisa offered ideas:
- Remember, little things mean a lot.
Michelle gratefully recalled that many neighbors have assisted her family. There is the person who cleared their sidewalk of snow; the neighbor who gave them plants and gardening tips when Michelle landscaped the home; and those who constructed a ramp for Miles's wheelchair. Gifts of used items and equipment may also be welcome. Mary and Steve gave Michelle a computer when they purchased a newer model. Michelle also gladly accepted a neighbor's former set of dishes.
"You never know what may help the family," Michelle said. - Let the family give back, if they can.
Michelle says that her friendship with Mary works well because it is mutually beneficial. - Adjust your offer to meet the needs.
Relatives or friends may offer to watch the family's children so the parents can go out. For some parents, the offer can be a lifesaver. For others, however, leaving their child is stressful. Tom noted that, for a long time, he and Lisa were uncomfortable leaving Amber; they worried while they were away. Other options for helping with childcare may include attending to the children while the mother reads a book or the parents indulge in a backyard ball game with their other children. Parents receive a break on such occasions, yet they are available to take care of emergencies. - Know the children and learn about their needs.
Now that Grandpa Joe Kimlinger is retired, he baby-sits for all nine of his grandchildren. He plays with Ashley for hours, even donning various hats and costumes for her entertainment. Leslie, Gabe, and Joe are comfortable caring for Amber and Ashley, because they took time to know the children's personalities and learn about their physical needs. The familiarity pays off if there are emergencies while baby-sitting, such as when Amber's feeding pump broke or the gastrostomy tube came loose. "When you have a child with special needs, you have to know what to do," Leslie said. - Be aware of services and support them.
Many families rely on government-funded services such as respite care and personal care attendants. Even with friends or relatives to help, the services are critical to families of children with disabilities. Tell legislators that you care about issues affecting children with disabilities.
Nurturing, belonging lead chlidrenwith disabilities toward independenc
The community, friends, and family sometimes see a child's disability rather than his or her many abilities. Attitudes of others affect how children view themselves, how they interact with others, and, ultimately, their expectations for success. It is important for parents to understand how general perceptions about disability affect their child so they can avoid or correct situations that may be negative.
Regardless of their specific needs, children with disabilities usually benefit when others treat them as much like typical children as possible. All children need nurturing and a feeling of belonging.
Knowing how to provide them for your child with a disability will go a long way toward helping him or her become a well-adjusted, successful adult.
Nurturing
Most children enjoy affection, such as hugs and hearing "I love you," from family and friends. The desire for trustworthy relationships begins in infancy. Dependable nurturing fuels a child's self-confidence and leads to independence and autonomy.
It is easy to be affectionate with a child who responds appreciatively. Some children with disabilities, however, do not have the physical ability to return smiles, embraces, or compliments. Others, with mental or emotional disabilities, may seem to discourage interaction. Despite behaviors resulting from their disabilities, the children need nurturing.
Frequent, positive communication is one way to nurture. When families and friends are patient and encouraging, they motivate the child to try to communicate. Enjoyable exchanges help children develop social skills and create mutually satisfying relationships with others. On the other hand, children sense others' frustration when attempts to communicate are not immediately successful. The result: they quit trying.
Nurturing some children with disabilities takes time, a precious commodity for their families. Often, however, it is simple activities, such as reading a short story, singing a song, chatting in the kitchen, or taking a brief walk, that involve a child and satisfy a need for nurturing.
Belonging
When parents and others learn that a child has a disability, each person reacts differently. If the reaction is disappointment or dismay, it must be must overcome to support the child and one another.
When family members and friends work together to help the child, they create an environment that tells the child he or she is loved, valued, and included. Inclusion (or belonging) is the safe foundation from which children eventually launch their independence.
Friends and relatives may inadvertently exclude children with disabilities by treating them differently than they do the other children in the family. Most children notice if an aunt has a pat on the shoulder for the child in a wheelchair but hugs for the others. If grandparents take some siblings, but not others, on an outing, those who stay home feel left out.
Inclusion or belonging usually results when others are accustomed to a child with disabilities. Frequent contact and interaction with the child improves comfort levels and communication for both parties. For example, becoming familiar with a child's speech pattern may help friends and relatives better understand the communication efforts of a child with speech and language difficulties. Children with behavior challenges may relax and respond more positively toward people with whom they feel familiar and accepted.
Helping a child with a disability become part of the family circle, or the wider community, may seem to be a daunting task for parents. Nurturing and providing a sense of belonging, however, are simple and effective first steps toward the goal. Furthermore, there is a bonus: successful results last a lifetime.
Going Places? Here rare travel tips for families of chlidren with disabilities
Traveling with young children, whether they do or do not have a disability, can be challenging. When traveling long distances, planning ahead will help prevent frustration for all riders in the car. Consider the following tips as you plan your travels:
- Consider the length of time your child tolerates being in the same position. Children in car seats, especially if they are molded to a particular child, can become uncomfortable. If a child typically gets frustrated after being in the seat for an hour, don't expect their tolerance to suddenly increase for the trip. Remember your child expects you to anticipate his or her every need and respond accordingly.
- Consider the time of day your child will be most likely to travel well. If you need to drive two hours, and your child normally takes a two-hour nap from 1 p.m. to 3 p.m., planning to travel during that time may make sense if your child will sleep in the car. Think about your child's dietary needs: Can she or he snack while riding or will you need to pull over regularly? (You may have better luck always pulling over for meals. Use these stops as an opportunity to stretch, change diapers, and use the bathroom to freshen up.)
- Identify your child's favorite toys or activities. At the beginning of the trip, try to let your child entertain him or herself and always save the best toys for last. If your child becomes bored with their options too soon, you may be in for some rough riding. Sometimes borrowing different toys from a friend may help also. The "new" toys may help ease the tedium of the trip.
- Determine locations to stop along the route. Plan your itinerary and stick with it. Look at a map and choose stop points for snacks, meals, bathroom breaks and stretching. You may need to pull off the road sooner, but try not to skip scheduled stops when things are going well. Once a child is frustrated, things can quickly go from bad to worse. If more than one child is along for the ride, one's problem will often escalate the frustration of another.
- Identify who will sit closest to the child.If your child needs a lot of interaction to remain entertained, plan on having an adult in the back seat, next to the child. An older sibling may be able to help out as well. Regardless of who sits by the child, if the helper begins to become frustrated or irritable, the younger child will surely sense it and be more likely to become upset as well. If possible, avoid having two small children sit right next to each other. Listening to "I want that" or "He's touching me or my things" can become very upsetting very quickly.
- Preparation is the key. Plan to double your driving time: If it would take three hours without children, plan on six. If you arrive in four, you will be very happy.
- Remember, the trip home may be difficult. Everyone will be tired and the anticipation of going home is not always as motivating as a vacation or seeing friends and relatives.
Planning a trip or an outing may require extra effort from parents, but it may be worth it. Someday your child is likely to remember the event with fondness and nostalgia.
Want a repeat?
Past Early Childhood articles are available
Articles on varied topics of interest to parents of young children have appeared in Early Childhood Connection over the years. Some past articles may be of help to families of young children with disabilities who are new to early intervention services.
Parents wanting copies of articles (or handouts based on the articles) from the past four years are asked to call PACER Center.
Please state the name of the article and the issue that carried it.
- "Choices: Opportunities for Life" (Book Review) - Fall 1996
- Communication Techniques and Devices - Spring 1999
- Computers Can Help Young Children - Winter 1999
- Establishing Rapport with Physicians - Fall 1997
- "Facilitating Hearing and Listening in Young Children" (Book Review) - Spring 1997
- "Families are Important" (Book Review) - Fall 1997
- Father's Involvement is Important - Summer 1999
- Financial Planning for Child's Future - Summer 1998
- Grandparents Can Help Families - Fall 1996
- Grandparent Group; How to Join - Summer 1999
- Hearing Screening for Newborns - Fall 1997
- IDEA Part B regulations - Spring 1999
- Interagency Coordinating Council Members - Fall 1997
- Is Your Young Child Developing at a Normal Rate? _ Summer 1997
- Introducing Your Child to the Community - Spring 1997
- Knowing the Disability Helps Your Child - Summer 1998
- Minnesota Early Intervention Seeks Parent Involvement - Summer 1999
- Parents are Welcome on IEICs - Spring 1998
- Parents Can Influence Legislation - Summer 1998
- Parents Find Support in Local Groups of Statewide System - Fall 1996
- Planning Early Childhood Transition - Summer 1996
- Precautions for Cold and Flu Season - Winter 1999
- Reduced Stress Leads to Happier Families - Spring 1998
- Simple, Inexpensive Devices Can Assist in Communication - Summer 1997
- Speech Augmentative Devices - Spring 1999
- SSI Appeal Rate Lower Than Expected - Fall 1997
- State system for intervention offers varied resources - Fall 1996
- Summer Activities for Families - Spring 1999
- Surviving a Child's Death - Summer 1997
- Take the `Scary' Out of Hospitalization, Testing - Spring 1997
- Talking the Talk: Learning the ABCs of Special Education - Spring 1998
- Vulnerable Children (Abuse Prevention) - Summer 1996
- Wheel Helps Mark Development - Summer 1999
Ask the Experts:
- Accessibility - Spring 1999
- Difference Between IEPs and IFSPs - Spring 1998
- Therapy, But No Insurance - Summer 1999
- Members of IFSP Team - Spring 1999
- Scheduling IFSP Sooner - Summer 1998
- Transition from IFSP to IEP - Winter 1999
Ask the experts: A forum for parents of young children
Parents of young children with disabilities often have questions about the early intervention system. With help from PACER staff, Early Childhood Connection answers some of the questions.
My former spouse and I have joint legal custody of our son. We disagree, however, about appropriate services for our child. What are my rights?
When parents are divorced and have joint legal custody of a child who requires special education services, each parent retains the right to be informed of and to participate in meetings regarding special education.
The school district should provide both parents, at the same time, with a copy of the proposed Individualized Family Service Plan (IFSP) or Individual Education Program (IEP).
If parents agree with the proposed services, they should put their consent to proceed in writing within 10 days, and the district should implement the new IEP or IFSP as soon as possible.
If the parents disagree, but one parent is in agreement with the school district, the parent who agrees with the school can provide written consent to proceed with services. If the parent who disagrees with the proposal does not respond in writing, the district may proceed with the proposed program of services.
If one parent disagrees with proposed services and notifies the school district of their disagreement in writing, the child's current IFSP or IEP would remain in effect until the dispute is resolved. This is frequently referred to as "Stay Put".
At any point in the IEP or IFSP process, either parent or the school district may begin conflict resolution procedures. This includes conciliation, mediation, or due process.
I have an Individualized Family Service Plan (IFSP) team meeting coming up. May I bring a friend with me to the meeting?
Parents have the right to bring additional people to their child's IFSP or Individualized Education Program (IEP) meetings. Minnesota law says that when parents are notified of a meeting to develop, review or revise their child's plan, "the district shall inform the parents of their right to bring anyone of their choosing to accompany them to the meeting."
Parents should feel comfortable and confident at the team meetings, because they make important decisions about their child's future there. Examples of people who may be invited include a family member or friend, doctor or nurse practitioner, community therapists or a child care provider. These people can often provide insight into a child's development. It is common and appropriate for parents to bring other adults to their child's meeting.
To help maintain courteous, open communication, parents should always notify their service coordinator or case manager if they plan to bring additional persons to the meeting.
PACER's site offers many PDF files for download, which require 
