It may come as no surprise that caregivers of children with FASD face many and varied stressors and strains including social isolation, lack of understanding of their childs’ issues from family members, healthcare professionals and educators, and cost and lack of availability of trained caregivers as well as lack of respite opportunities. Watson, Coons, & Hayes (2013) have determined that the stress of caring for a child with FASD is significant requiring a number of supports and respite for caregivers. In spite of Disability Tax Credits and other small sources of funding, respite can be difficult to find and fund, particularly if a child/adult with FASD has needs that are complex such as aggression or running away.
What is respite?
Respite can be any opportunity for you to get a needed break from the ongoing stressors of raising a child with FASD. Examples of respite include a worker, family member or friend taking your child out for an activity or staying home to do something that keeps your child stimulated while giving you a chance to regroup or do things that are difficult to get done with your child. Respite can be for an hour, a half day, full day, overnight, weekend or more.
Locating/finding respite workers?
- Be on the lookout for people who naturally connect with your child and have an understanding or wish to understand FASD. It could be an assistant at school, a swim instructor, a camp counsellor, a retired teacher or a university student who wants to volunteer.
- Ask questions of other parents/caregivers you meet at other activities to find out who they use.
- Visit your local children’s’ mental health services, community centre’s, coffee shops, college, place of worship or library and talk to people. You never know where you may find a caring person with appropriate skills who can connect with your child.
- Post an ad at senior high schools and universities for students who may want experience (respite can happen while you are at home if someone is supervising your child).
- Register with www.respiteservices.com to take advantage of their worker database (note: you must qualify).
- Ask your children’s school or mental health treatment services for a list of any known respite programs or opportunities.
- Post an ad through Craigslist or Kijiji. Remember, you have to interview and screen people no matter where you source them.
Note: Respite workers can be transient for many reasons, so keep networking to ensure you have the support you need over time.
What do you look for in respite workers?
Look for someone who connects well with your child and has interests or skills that can benefit your child (CYW students, education students, healthcare or police service students). Parents recruit workers for different roles. Perhaps you want a male worker who can play basketball with your teenage son. Maybe your child enjoys nature and you find someone who loves to garden. Look for people who are motivated to learn skills in areas that meet your child’s needs e.g. non-violent means for restraining your child or a student who wants to work in children’s mental health or special education .
Retention of respite workers?
- Invest time in your worker.
- model what works best with your child by having them come to your home while you are there.
- Fill out an “All About Me” sheet about your child https://www.
fasdwaterlooregion.ca/assets/ documents/ALL-ABOUT-ME_FINAL. pdf or an up to date safety plan that includes indicators of your child’s issues.
- Be open to questions.
- Make working with your family fun, rewarding and as convenient as possible for your worker and you.
- Create learning opportunities that fit with your worker’s interests (e.g. a student who wants to be a teacher attends an IEP meeting with your child).
- Recognize your worker and remember little things, like birthdays or achievements if they are a student.
- Make sure your worker is comfortable with the hourly rate you pay and feels valued (CYW make anywhere from $15-$20/hr).
If finances are an issue, try to arrange respite situations where you can trade with other parents/caregivers of children with FASD. This works well if your children have been in activities together before and for short term respite (needing an hour to go shopping or to get a massage). Never take your respite worker for granted!
Locating respite programs?
Some mental health programs offer respite to children with ongoing behavioural or aggression issues. Check with your local children’s mental health services. If your child qualifies for SSAH (Special Services at Home), you may qualify for respite funds for programming or a worker.
How do you get funding for respite?
Ask someone (a social worker or mental health professional) to help you fill out government forms such as Special Services at Home (SSAH). Your social worker or local children’s’ mental health facility can also tell you about charitable foundations that fund respite.
Visit www.respiteservices.com. You may be eligible for funding for respite or at the very least be directed to possible community resources. Search the internet for your local programs and services. Some regions of the province have designated FASD programming or workers to assist you to work through your family’s issues.
What parents/caregivers say about respite
While it is sometimes difficult for you and your child to be separated because you know their routines and triggers, it is important to your mental health and well being to take time for yourself and to give your child opportunities to have fun with others .
“At first I felt guilty and anxious leaving him with someone else. We had gone through so much with his aggression and tantrums. I had to let go and trust that the worker I had found would know what to do. After a while I found myself relaxing and rediscovering myself…all in a one hour massage. I came home refreshed and ready to be present to my son. My worker is a godsend. My son and I have a better relationship because I take time for me.”
“Respite is about my boy having fun, getting to go out and explore and be happy and do things with other people.”
“I look at respite as a day off for a parent to do the things they couldn’t do before. I may attend an appointment. It could be having a coffee and reading the paper. You’re able to relax your mind and re-energize. It takes away the constant worry.”
“You have to invest time in your workers. It’s not ‘here you are, take my kid.’ You spend time building a relationship and giving them the tools to be successful.”
“I want my child to be visible in the community, not isolated, and respite workers get her out there.”
Note: These tips were based on those developed with input from parents of children who have physical and developmental disabilities–see http://www.hollandbloorview.ca/resourcecentre/family_respite/respite_tips.php
Longer Term Options
There are many reasons why you may need overnight respite or longer term options. In summer, it is wonderful to give your child the opportunity to make friends and different experiences away from you. However, family illness, mental health concerns in you or your child can also necessitate respite. Following are some of the current options in Ontario
- Regional/municipal day camp programs with inclusion workers (e.g. YMCA, municipal community centre programs)
- Camp Unity in Brantford, ON specifically for FASD
- Overnight respite programs through regional children’s’ mental health facilities (you must call and be assessed for these types of services but if in crisis DO NOT HESITATE)
- Paid workers for day care
- Overnight camps: Camp Kennebec, Camp Towhee, Kinark Centre, Camp Kodiak (note: children are screened prior to admission to these camps—aggressive children may not qualify and/or you may have to supply your own 1:1 worker)
- Family and Children’s Services (particularly if there are protection issues in the home-your child is being aggressive and another child is being threatened or witnessing violence)
Many of the issues faced by caregivers of children and young adults with FASD are also experienced by caregivers of children with autism. The following are some suggestions from Autism Speaks
More Than A Mom: Living A Full and Balanced Life When Your Child Has Special Needs by Amy Baskin and Heather Fawcett
More Than A Mom is full of practical advice, strategies and reassurance. Click here to read important excerpts from More Than a Mom’s chapter on Finding the Help You Need. Amy Baskin and Heather Fawcett give workshops and keynotes based on the book for special needs groups and conferences.
When You’re Ready to Interview: Important information You Want to Know about Your Respite Worker
Individuals with FASD and autism have unique needs. We cannot expect any and every worker to be a match for your family. It is crucial to search until you find a respite worker who can provide you with the support you need. Click here for 10 items you will want to discuss with potential respite works before you make a decision. Although initially intended for caregivers of children with autism, the suggestions are very applicable to FASD.
Links for taking care of yourself:
fasdwaterlooregion.ca/ strategies-tools/sub-page- test-2
- Care for the Caregiver tipsheet https://www.
fasdwaterlooregion.ca/ strategies-tools/sub-page- test-2/care-for-the-caregiver
- www.skfasnetwork.ca –excellent link to 20 tips for parents and caregivers of children with FASD including #16—tips for helping adjust to camp.
- Let’s Talk FASD
In order to better educate the public on issues facing people with this range of disabilities, the Intervention and Support Working Group of FASD ONE commissioned three research papers in areas of critical importance: effective practices, education, and respite.
On the Publication page (http://www.fasdontario.ca/cms2/resources/publications/) there are several publications talking about Effective Practices.
- Summary: Advancing Effective Respite Services in Fetal Alcohol Spectrum Disorder
- Summary: Advancing Effective Service Provider Practices in Fetal Alcohol Spectrum Disorder
- Summary: Advancing Effective Educational Practices in Fetal Alcohol Spectrum Disorder
- Advancing Effective Educational Practices in Fetal Alcohol Spectrum Disorder
- Advancing Effective Respite Services in Fetal Alcohol Spectrum Disorder
- Advancing Effective Service Provider Practices in Fetal Alcohol Spectrum Disorder
Campbell, H. (1996). Inter-agency assessment of respite care needs of families of children with special needs in Fife. Public Health, 110, 151-155.
Caples, M., & Sweeney, J. (2010). Quality of life: A survey of parents of children/adults with an intellectual disability who are availing of respite care. British Journal of Learning Disabilities, 36, 64-72.
Doig, J. L., McLennan, J. D., & Urichuk, L. (2009). ‘Jumping through hoops’: Parents’ experiences with seeking respite care for children with special needs. Child: Care, Health and Development, 35(2), 234-242.
Dunbrack, J. (2003). Respite for family caregivers – An environmental scan of publicly funded programs in Canada. Prepared for Health Canada.
Neufeld, S., Querby, B., & Drummond, J. E. (2001). Respite care users who have children with chronic conditions: Are they getting a break? Journal of Pediatric Nursing, 16, 234-244.
Wherry, J. N., Shema, S. J., Baltz, T., & Kelleher, K. (1995). Factors associated with respite care use by families with a child with disabilities. Journal of Child and Family Studies, 4(4), 419-428.