Hi there fellow caregivers, my name is Jennifer. I have a daughter with FASD and I’ve fostered other children who also live with FASD in the past. My partner and I are the advocates, bouncers, parents and playmates of our kiddo as we navigate life, systems and society that are not FASD-informed. It’s a recipe for exhaustion. Sort of like that time when you pulled an all nighter to study for an exam in high school, only you don’t get to have the catch-up nap for at least a decade.
Though there is significant room for improvement within all systems, self care (more than just a trendy buzzword) is a way we can help ourselves now. Self care is essential, yes. It is important that caregivers of children with FASD prioritize their personal health and well-being. Self care also ensures we are able to continue providing care for those who depend on us the most, but it means we can do so with spunk and sparkle (just add coffee and dark humour). This list of ‘accommodated self care’ suggestions veers from bubble baths and dates with your BFF, but please know that those things are still important! It’s hard to prioritize self care when your world is moving so quickly because of the needs of your child or children, especially on a budget and balancing other life demands. This list is not meant to be an added stress to your already very full plate of parenting a child with a complex, often misunderstood, invisible disability. Take what you can and leave the rest! Know that you are not alone; you are loved, and you will survive the day (and night)!
- Sleep. If sleep is elusive in your home, set aside other people’s opinions of how your nights ‘should’ look and get some sleep whenever and wherever you can. If that includes co-bedding for periods of time, then do that. If you can’t stand the thought of co-bedding, don’t feel pressure to do that. Restorative sleep underlies so much of our ability to respond rather than react to stress and the needs of our kiddos, that we can’t forget how vital it is to our own health. Because our kids tend to struggle with sleep themselves, it also impacts their ability to self regulate and can exacerbate their difficulties. Here’s a great link to support you with sleep for your kiddo with FASD and other neurodevelopmental disabilities.
- Breathe. Unclench your jaw. Separate your tongue from the roof of your mouth. Notice the sensations you can feel in your body. Notice your feet planted firmly on the ground. What comes to you when you take a moment to pause just for you? Of course, ensure the safety of children in your care before totally unwinding. The cool thing about grounding like this is that we can do it whenever and wherever we might be, even if it’s right beside our kiddo who’s struggling. We can even support their self-regulation skills by teaching them these tips too! To learn more about self regulation, visit The Mehrit Centre.
- Try not to judge yourself. You do what you have to do in order to survive the intensity and continuously high needs that most people can’t relate to. Don’t swallow other people’s opinions or unsolicited neuro-typical parenting advice. People that aren’t parenting children with FASD do not ‘get it’, and may never ‘get it’. That’s okay. Families that do parent from a brain-based approach and understand neurodiversity are rooting for you all the way! I see you! You’re doing a great job! Keep going!!
- Find others like you. They’re out there! I promise! Seek membership to a peer-support program if it exists in your community, or try to connect with parents living a similar narrative as yours. There are also online forums that can help to create connection for caregivers who do get it!
- Practice saying ‘no’. Say ‘no’ to social events that you don’t want to go to or requests of you that you don’t actually want to do. It’s okay to say no, to do less and to lay low when you need to! Revisit post #3!
- Tag team. Spell off with your partner if you have one and give each other breaks. If you are doing this solo, find out what respite options are available to you in your community and befriend people who are able to roll up their sleeves and stand in this with you and your family. Revisit post #4. You are a rock star!
- Do not take it personally when well-intentioned friends and family tell you they ‘just don’t see it’ or ‘he/she/they is so good when they’re with me’. Let them think that. If they are good with your kiddo and understand the safety needs for them, consider it free respite!
- Tell your friends and family you need breaks. Having a family member or close family friend that understands your child (and whom your child responds well to) helps everyone have positive interactions and the breaks we all need to manage day-to-day.
- Learn as much as you can about FASD (if you haven’t done so already). Remember that your child is unique and has many strengths. By identifying his/her/their needs however, you can help to create accommodations and experiment with approaches that can better support their well-being, self regulation, and functioning, which helps you too! Check out CanFASD’s Foundations in FASD Certificate.
- If you are employed, speak to your employer about the Employment Equity Act and discuss workplace accommodations, flex schedules and remote work options. Employers are becoming far more hip to the life and times of work-life balance and the high needs of many families. Workplace accommodations for caregivers is a protected human right; employers are expected to provide reasonable measures to ensure equitable employment opportunities based on family status. Find out what your options are – wherever you live – to create more harmony for yourself and your family. In Ontario; Canada-wide Duty to Accommodate.
- Find out about Employee Assistance Programs. Continuing on the theme of employment, it’s also a good idea to find out about employee assistance programs that might be offered through your workplace — you’d be surprised to find out what is available to you or your child(ren) at no cost!
- Create new traditions that are less overstimulating, but still honour special events and celebratory times of the year. Revisit post #3 when you feel like you’re not doing enough or you feel guilty for making accommodations that best suit your family’s well-being.
- Share information about FASD with family and friends who need to better understand your child. Let family and close friends know they need to understand FASD from a disability lens, and support your child from a place of compassion, understanding and flexibility. If this conversation isn’t possible without collateral damage, try to limit time together and pull back to preserve your own well-being. Revisit posts #3 and #4.
- Bring a supportive person to care planning meetings, doctor’s appointments and IEP meetings, especially if the professionals you’re meeting with are not well versed in FASD. This provides you with a bit of a buffer, a second set of eyes and ears, as well as an additional voice regarding your child’s needs and strengths. Let them know about CanFASD’s Foundations in FASD course and the FASD for School Staff training.
When you have time, connect to self care tips and strategies shared here. Remember to breathe and that your best is more than enough. Chugging coffee and taking fake bathroom breaks are quick fixes, but we all need real breaks to restore. In solidarity, you’ve got this!
Written by Jennifer Noah