Today was another hard day. For many reasons.
I saw this graphic this morning on the Wild Peace for Parents Facebook page. I was going to share it in a group, but then paused. Not sure what to say. I read so many posts from caregivers who feel (or are) alone. And judged. And stressed. I’ve been there. Still am some days.
Why is it some people default to have you tried this or he needs more discipline or you are too soft instead of how are you holding up, or are you getting enough support, or could you use some help?
When the maiden was young we were connected with many organizations. Some of the support workers we had use to ask me these questions. Even though they were assigned to access supports for the maiden, they were genuinely concerned for me. They knew if I was supported the maiden would be better supported.
Caregiver Needs and Stress
Caregiver Needs and Stress in Caring for Individuals with Fetal Alcohol Spectrum Disorder
In the above noted survey from 2015 (by L. Baugh, S. Bobbitt, G. Andrew, J. Cook, C. Green, J. Pei, C. Rasmussen) caregivers reported:
- A wide range of needs and concerns, including: their role as caregiver, their relationship with their child with FASD, their relationship with family and friends, their financial situation/covering costs, the caregiver’s own health, stigma and discrimination, the safety of the individual with FASD, and the caregiver’s own safety.
- Many positive experiences of caregiving: learning about themselves, discovering strengths in themselves, contributing to others understanding of FASD, becoming more confident in dealing with others, and meeting helpful people.
- Varying degrees of satisfaction with the supports they were receiving. They reported higher levels of satisfaction with the information/advice given to them and the ways they were involved in treatment and care planning, and lower levels of satisfaction for support from medical and/or care staff.
- High levels of stress, specifically in the following areas: things happening unexpectedly, being unable to control important things, feeling generally “nervous” or “stressed”, and not feeling like things were going their way or like they were on top of things.
While none of the above is surprising, they also discovered:
- Caregivers of adolescents reported the highest levels of wellbeing concerns.
- Concerns tended to be higher among caregivers with adolescents and adults, compared to those with children.
- Foster parents reported fewer well-being concerns than biological/kinship, and adoptive parents.
- Caregivers who cared for the individual with FASD for longer periods of time reported more well-being concerns.
In our situation not only did all service and support stop when the maiden turned 18 (and she was put on the waitlist for adult services), it also meant the support I had benefited from also disappeared. There is no one to guide and support us as we navigate the adult service sector. And now instead of people suggesting discipline or other parenting advice, I get … when I was 18/19/20 etc., I was in the army, on my own, going to university, working full time…. fill in the blank.
What Caregivers Really Need
The report went on to make recommendations on the Implications for Policy and Practice:
Caregivers of individuals with FASD have multiple areas of need and concern, and experience high levels of stress. This is particularly true as children age, and the transition to adulthood may be a time requiring higher supports. Efforts should be made to reduce caregiver stress by reducing demands on caregivers and providing resources that better meet caregiver needs. These efforts may be particularly necessary for those caring for adolescents and adults and those with lower income levels.
And yet from many posts I see in caregiver groups we are still struggling. It is common in the disability world to say that a diagnosis doesn’t end at 18 – so why is there still such a disconnect between child and youth services and transitioning to adult services? I find supporting an adult more consuming, exhausting and stressful. Trying to balance the need to respect the person as an adult but at times their skill level is not. At a time when we could use the support and experiences of those who have been through this, we are left alone to reinvent the wheel.
Best advice I can give for caregivers who find themselves without support is to find a group of like-minded individuals. In person is best as that can provide the possibility to grow your support network with local resources. As long as it is facilitated so it doesn’t become a place to simply vent.
If you can’t find in person, or you don’t seem to fit, try online. I provide a few suggestions on the page fasd on the web but there are many more. If the group is moderated well they can be an enormous support. If one doesn’t fit, try another. I’ve been in quite a few over the years and there are definite vibes to different groups. Online can also lead to in person or virtual friendships. You may find someone you can text or chat with outside of the group or who lives close to you.
Soothe Your System: Try a Little Loving Kindness
Life as a caregiver can be tough. It was tougher these last couple years. I wrote about some of the things I did here: 9 Ways I Navigated the Pandemic. One of the easiest, which has made a big impact, was curating my social media feed. If you don’t have a social support network you can find social media accounts that offer posts and advice that speak to your soul, soothe your soul or spark joy. I highly suggest Wild Peace for Parents. It is not about Fetal Alcohol Spectrum Disorder but it is about being a parent to a child with a disability or complex needs – the focus is more what parents can do to help themselves. Sometimes that is exactly what we need.
If you still are feeling alone, practice giving yourself some self-compassion. Wild Peace for Parents posted about the Loving Kindness Meditation as a way to “focus on developing feelings of goodwill, kindness and warmth towards yourself and others. Research has shown that Loving Kindness Meditation boosts positive emotions, enhances self-acceptance and resilience, helps us feel more satisfied with our relationships and connected to others. It can even boost physical health and improve our emotional responses to parenting challenges.
A 2018 study by James Kirby and Sarah Baldwin on using LKM in the parenting context found parents who received LKM displayed higher levels of self-compassion and motivation to show themselves compassion compared to the control group.”
So how do you do a Loving Kindness Meditation?
WPP suggested: Whenever you feel a need, pause and notice the opportunity you have to generate and spread love.
First, send yourself some love by silently reciting these words (or use your own words):
- May you be safe.
- May you be happy.
- May you be healthy.
- May you live with ease.
Next, imagine sending the same warmth and well wishes to others.
- begin with your child, a loved one, or good friend
- next, mentally offer these well-wishes to a neutral person or acquaintance
- then expand your awareness to the whole world, sending warm wishes to all living beings.
I really like this simple meditation. As a caregiver I don’t always have a lot of time or energy to add anything complex.
The LKM is not new. An article from Positive Psychology states:
Loving-kindness meditation or ‘Metta’ meditation is an ultimate form of generous and selfless love towards ourselves and others.
‘Metta’ is a Pali word for benevolence, friendship, affection, and kindness. This form of meditation is one of the most soothing ways of putting together and practicing the four qualities of love – friendliness (Metta), appreciation and joy (Mudita), compassion (Karuna), and equanimity (Upekkha).
Loving-kindness meditation is free from any expectations or bindings. We do not do it for accomplishing a goal or proving a point; it is merely a process to experience and enjoy.
Metta meditation usually starts with the self, as Buddha said ‘unless we treat ourselves with love and compassion, we cannot reflect the same on others.’ Once we start experiencing self-love and self-compassion for ourselves, we can show the same to others too.
With love and kindness meditation comes self-compassion, increased focus and attention, and a deep sense of emotional strength that balance our thoughts and actions.
In early practices, loving-kindness meditation was a way of self-healing, sweetening, and pacifying the mind, and it produced positive feelings towards everything around us (Salzberg, 1997).
There are four main factors of loving-kindness meditation that accounts for its universal applicability:
- It is an all-inclusive method that works for all ages, personality patterns, and personal situations. There is no specific target population for this meditation.
- Loving-kindness meditation requires no prior set up or arrangements. It is one of the most flexible forms of meditation that we can practice anywhere, at any time, and any pace.
- It does not induce a sentimental feeling of goodwill; neither does it impose any obligation for goal fulfillment. The only thing the practitioner needs to focus is on the process.
- The effect of loving-kindness meditation lasts for a lifetime. Regular practitioners find this meditation to be an excellent way for self-disclosure, motivation, and empathy – the basic positive emotions that create a healthy mind (Smith, 2015).
I think I will make a commitment to myself to try this. It might help with the feelings of isolation or loneliness that can sometimes feel overwhelming. I was diagnosed with anxiety and depression in my twenties. I’ve tried different therapies and therapists. I’m still experimenting. I like this one also as it sends compassion out into the world. I don’t always have the words to say, but this is a way I can send my good vibes out into the world. Which seems to be in need these days.
If we take moments to give ourselves compassion and kindness and send love and kindness to others it has to raise the vibration around us which will help us through difficult days.
I will offer suggestions for other pages or accounts to follow in upcoming posts or add ideas on the FASD on the web page. If you have a favourite you follow, feel free to share in the comments.
Until then, I will leave you with some inspiration and love: