You have the diagnosis, Fetal Alcohol Spectrum Disorder (FASD). You have attended some initial training sessions, and now the challenge of raising a child with FASD is starting to sink in. One thing you are beginning to realize is, that if you are going to make it as a primary caregiver(s), you can’t do it alone.
But where do you turn? Who will understand? Who can help? These heartfelt questions express legitimate needs. These are the questions I heard my daughter and son-in-law raise in regards to their adoptive son, my grandson, who was diagnosed with FASD during senior kindergarten.
Early on we learned how important it is to surround the family that includes a child living with FASD, with understanding people – a circle of support that is both formal and informal.
And so, our journey began to develop a support team.
The following are some suggestions of people who could be a part of your support team and who could help you along the way.
Potential Support Team Members
Family doctors, developmental paediatricians, medical specialists, occupational therapists, speech pathologists, lawyers, adoption agencies, therapists….we saw them all. We viewed these professionals not just as appointments that had to be kept, but as integral members of our support team. We told them that they are part of our support circle and that we valued and needed them. Each professional is a part of a network and we found that they often had suggestions and resources that were valuable.
In particular, occupational therapists (OT) offered valuable strategies that are helping all areas of life…physical, social and emotional. OTs will often interface well with your child’s school and help the school provide valuable information about your child’s day-to-day needs. Some occupational therapists will train caregivers so that they can practice therapies at home.
B) Extended family
If you have extended family nearby, invite them to be a key part of your support team.
Share how they can be an integral part of helping you create environment(s) where your child/youth can succeed. Be proactive about this! Many don’t know how to help, so you may have to suggest how they can contribute! (If you do not have extended family nearby, perhaps a close friend(s) could support you in some of these ways.)
Our extended family’s learning journey
We wanted to be a hands-on part of the support team for our grandson. Our first step as grandparents, was to determine that if we were going to help our grandson living with FASD, we would need to become as educated as we could about the disability and learn effective strategies. We knew we needed training too! We accompanied our adult children to the excellent training offered by Halton FASD Community Initiative. This training is free for caregivers and is offered as 2 day sessions or 4 evening sessions, several times a year. (It was life-changing for us!) We wanted to learn all that we could in order to better understand our grandchild and to help his parents in effective ways. This training convinced us that assisting our children in developing a stable and nurturing home and helping them reduce stress, were the greatest support we could give.
After the training, we met as an extended family several times to share and process what we had learned and to see how it applied to our grandson. We compiled information that we gleaned at training sessions, from articles and research findings and put them in binders to give to immediate family members. We poured over the information and discussed how we could work together to provide consistent support and strategies in our response to our grandson’s needs and challenges. Every time we learned something new, we passed it along to the rest of the family. We determined that we would all commit to apply the same interventions and strategies in all our family environments in order to provide anchors of consistency and effectiveness.
A few times, we invited extended family members to attend appointments with professionals, case conferences and other sessions at the school, so that educators could meet and hear from extended family members and so that our family members could better understand the needs of our grandson and the advocacy that we were undertaking.
It was clear that the most helpful support we could offer was to provide respite for the family. Because children learning to live with FASD thrive on structure and routine, we wanted to provide consistency in the family’s routine. We are able to provide weekly respite on the same day of the week and at the same time. Our grandson calls it, “Grammie Day.” We also provide respite for his neuro-typical sister who needs a break from the stresses that come with being a sibling of a child with FASD.
Other ways families/friends can help:
- Accompany you to meetings as a non-participant to be a note-taker, provide support, to be another pair of ears and then to help process the information or to assist you in making decisions.
- Provide transportation to appointments (because you are so exhausted!).
- Provide transportation for the child’s extracurricular activities.
- Schedule appointments on your behalf.
- Do on-line or other research on FASD or help you find resources.
- Help compose letters to professionals or edit correspondence.
- Cook a meal once a month that you can have on hand for those “off days.”
- Help with homework once a week.
- Share in a hobby with your child.
- Help fill out grant forms and forms to request other social services.
- Create social stories or visual aids for cueing.
- Provide supervision at family gatherings or outings.
- Be there when you need a shoulder to cry on.
- If extended family live at a distance, see what consistent routine that they could be a part of via Skype. How about having a grandparents or aunts/uncles routinely reading a story over Skype once a week.
- If your family members are unable to care for your child with FASD, they can provide respite for the neuro-typical children in your family.
10 key facts and concepts about FASD to share with extended family
- Emphasize that FASD is a brain-based disability for which there is no cure. It is a developmental disability meaning that the person will be affected through all stages of life. At the same time, emphasize that there is hope for the future!
- Define dysmaturity- chronological vs developmental age (For the average individual with FASD, cut their age in half to determine an approximate developmental age.) Teach family members to adjust their expectations.
- Outline why your child lacks consequential thinking and can’t easily learn from their mistakes.
- Explain that your child’s environment is key to their ability to cope – family members are part of your child’s environment every time they visit/host you.
- Share how you are having to change in order to give your child the best chance to be successful and invite them to consider making these adjustments as well.
- Share some details about your child’s need of an external support – people can be one form of support that assists them in executive functioning tasks and helps grow a good life for your child
- Emphasize the importance of support, structure and supervision. At family gatherings, ask different family members to take turns being the supervisor.
- Help extended family make accommodations in their homes to meet the child’s and family’s needs. Suggest they set routines in their home for when the child visits ex. where coats and shoes are kept; the same seating plan around the table at family gatherings; use the same placemat, cutlery, plates and cups; create a quiet space where the child can go to calm down; provide developmentally appropriate toys/games/crafts; play the appropriate music to create a good ambiance; reduce stimulation by keeping rooms free of clutter.
- Explain why you “discipline” the child the way you do. Typical child-rearing and parenting techniques are counterproductive for your child living with FASD. Share what does work and what doesn’t so they can follow the same way.
- Show them visuals as quick training opportunities – photos, charts, research findings etc. Explain that the overall life goal for your child is “successful interdependence.” We showed one family member a photo of a typical brain affected by FASD and it completely change their view of the child!
C) Teachers, TA’s and other personnel at your child’s school
Someone advised us early on, “Don’t make the school your enemy.” Find ways to thank, express gratitude and support your child’s teachers. Ask teachers how you could help them. Determine to manage your anger, disappointment and concerns in such a way that the staff at your child’s school are not put on the defensive. Create ways to be advocates for your child together. Share all that you know about FASD and share strategies and supports that work at home that they can apply and vice versa.
D) Respite workers
Secure funding for weekly, bi-weekly or (at least) monthly respite. If you cannot secure funding for this, and a family member asks how they can help, suggest they provide child care or pay for it so that you can get much-needed breaks. Some people may not have the bandwidth to care for your child, but have the finances to pay for someone else to do it.
- Try hiring a trained Teacher’s Assistant (TA)/Educational Assistant (EA). They are working in our schools with children with exceptional needs. Find them through posting on KIJIJI, asking at your school or word of mouth. Conduct interviews, request a Vulnerable Sector Check (VSC) conducted by a police service within the last 6 months and check references. Many TA’s express interest in knowing more about FASD. Train them too.
- Arrange for them to observe you as a family and learn what strategies work with your child before you leave them on their own with your child. Some respite workers serve best by caring for your child inside your home. Others are good at taking them out into the community for activities. Choose someone who can act as a role model.
E) Family friends
Raising a child with FASD can be VERY lonely. Your child often has difficulty building peer relationships, or struggles with regulating his/her emotions and controlling outbursts. Play date invitations can be rare. You can feel socially ostracized.
Try and think of one friend who you could explain the situation to and ask them if they are willing to become “family friends” with you and your child. Start with 45-60 minute play dates. Determine the length of a family play date according to how long your child can interact with other children without incident. Provide constant supervision.
F) Local caregiver support group
No one will understand you better than another caregiver of a child with FASD. Attend your support group (like this one!). Listen to each other vent, seek practical advice, share successful interventions and learn about resources you can access.
G) Church/Community Organizations/Camps
Discover ways for your child to become a valued part of a faith community or community organization or attend a camp. Attending weekly services, participating in lessons or volunteering at community events is another way to add predictable and meaningful experiences into your child’ routine. The people you attend church with or neighbours who participate in community activities with your child, become an informal part of your support team. Everywhere you go, you will need to educate others on FASD, manage expectations and train on effective strategies and supports.
It takes time to build your support team, but as it grows, it should help lighten the load and empower you to face each day as you strive to provide the best care possible for your child living with FASD.
Feel free to leave comments in the box below describing how you have built your support team, who has stepped in to help you and how they have helped.