The birth of a child with a disability or on-going medical condition is a huge adjustment for any family. It can affect family relationships and finances and can exhaust the time and energies of parents. It can be overwhelming to deal with all the feelings associated with the care of a child who has special needs in addition to supporting other children and daily life. An important resource for parents is respite care, the temporary care of a child with special needs, giving parents the time to re-group on a regular basis. Although it may be hard for parents to take time away, self care is important to maintain a healthy and positive perspective. Parents can use this time to see friends, rest, shop by themselves, have a date with each other or attend to projects at home. It can provide renewed energy and outlook.
The Benefits of Respite Care for You and Your Child
- More time for yourself to reaffirm your value as a whole person. Care giving is just one aspect of what you do.
- New relationships in your child’s life. Whether your child is typically developing or not (including those on the autism spectrum), it is surprising how well he may adjust to a new care giver and benefit from a widening social circle.
- More time for other important relationships, whether with your partner, other relatives or friends.
Trusting Someone New in your Care Circle
Sometimes the biggest hurdle to receiving respite time is feeling that no one other than you is able to care for your child sufficiently or that no one would want to care for your child who has seizures, is non-verbal or poses other challenges. This is not the case. Often times, people confuse “respite” with “hospice” and you can start the conversation by saying your child is very much alive and, in fact, “I just need a break.” Here are some steps to make sure your respite care giver is someone you trust. Remember, the best advocate for your respite care is YOU.
- Your care giver will be alone with your child, so it is important to be smart when researching your options and consider full background checks.
- You may check on the U.S. Department of Justice National Sex Offender Public Website yourself for free http://www.nsopr.gov. Also research county court records, which are open to public view at no charge and available on-line in most states.
- Ask your potential care giver to shadow you for a day. Pay close attention to how she responds to your daily routine and interacts with your child.
Finding Your Perfect Respite Provider
- Start with your trusted inner circle and ask relatives or friends.
- Post your volunteer respite provider opportunity in bulletins at your church or other trusted organizations.
- Contact local college nursing programs; often they will team up with families to provide medically trained respite volunteers while the students earn credit (a win-win situation).
- Some respite care is offered by a voucher system for state aid. The United Cerebral Palsy Center of Southeastern Wisconsin is a great example of a community organization that offers help finding respite care, regardless of the need.
- Some hospital or church groups provide volunteer-based community help.
It is healthy for the whole family if everyone, including the parents, makes some time for themselves.
Do you have a positive experience with respite care? If so, please share it here.
Ellen Anderson worked for over 6 years leading the Volunteer Respite Programming for Children’s Hospital of Wisconsin (Children’s Service Society of WI). She has spoken nationally on the topic and was key in providing local respite programs for children with special needs which grew from 126 volunteers helping 37 children to over 2,000 volunteers helping over 400 children annually while their parents/caregivers got a much needed break on a regular basis.