By Kristen Eriksen

 So, the first time we had any in-home services in my home, maybe 5 years ago, the worker asked me what I did for my own self-care. My answer was that I was way overdue for my mammogram, colonoscopy and annual physical. I kid you not, that is all that I considered for self-care for me. Honestly, I did not understand what the term meant! This is not to say that I did not have my own self care practices like exercise, hydration, time with friends, massages, etc. but with twins with FASD (Fetal Alcohol Spectrum Disorder) + many other diagnoses, I had long forgotten about or had given up many of those regular habits.  

I was already planning to write a self-care blog when I ended up listening to the most wonderful interview on Robbie Seale’s FASD Family Life Podcast with Jillana Goble, that made me feel so much more motivated to write this, almost like that podcast episode is the preamble to my little blog. Robbie is doing a summer series which she calls “Mom Talk” where she chats with other moms on the same or similar journey, sharing stories, strategies, etc. I strongly urge you to listen to this episode by using this link. I think the plan had been to talk about the book that Jillana had written (called “A Love-Stretched Life”) but they chatted like two besties initially. It was a refreshing exchange, and just felt like I easily could have been in that conversation with them. They talk about this “Complicated Mothering Journey”, grief and loss, and some of the challenges that we may face. (I will from now on call it a complicated parenting journey to acknowledge that this is about mothers, fathers, grandparents and many other kinds of caregivers.) It is a journey that we are not prepared for. It causes a lot of worry and concern especially when something unexpected pops up early in this journey, say with younger children or when things seem to be going along smoothly, or you are early in the process of finding information about FASD and have not yet been made aware of some of the secondary or tertiary symptoms. Every person with FASD is unique, with unique strengths and challenges, so what happens in one family may not happen in another. That said, there will be challenges for sure. Don’t' let that scare you, or make you feel despair. Just be aware of it.  Knowledge is power, and when you know better you can do better, or to steal from a book title you can “Try differently rather than harder”. (If you don’t know, this is a book by Diane Malbin that is the bible for help for parents and caregivers of children with FASD). 

The life of your child is their own journey. You can give them all the support and educational tidbits in the world, but they may still go down a path that is challenging for them and you, or that is not what you hope and dream for your child.  I know that this really is true for every parent, but it seems especially poignant for our children. We are all involuntarily “invited to embrace the unexpected”, as Robbie and Jillana discuss.  I was blown away when Robbie shared that after a great training, she was very deflated. Why? because she was “seeking the elusive cure for FASD”. I felt this in my CORE!!! That has been my story for so many years. I chased so many educational options thinking that I would be able to find THE answers about how to parent all of their challenges out of them, or through the right program, be able to prevent many of the worst challenges from happening. The reality is that we cannot change them or fix them, so some unfortunate things may be unavoidable. What we can do is love them and try to give them the best support that we can.  Oh, and be a safe place for them to return to whenever they may need it. 

So here I am in a support position for families with children with FASD in Massachusetts. I want to share what has helped me that may be a help to other families. I want to help you find education and coaching opportunities hopefully sooner than I did. I will try to share tidbits of wisdom, stats about FASD, and ideas for you to try. 

So here are a few of those tidbits related to special needs parenting and self-care:  

Find a therapist for you, and one for you and your spouse/partners in parenting. You will need your own place to process this chaotic life, and work on your marriage or any caregiver relationships that you have. One of the most difficult parts of this journey for me is when I can tell that my husband, teachers, fellow mom’s with neurotypical children, and family members do not understand what I am doing or why. We often feel judged by many and seen as the reason for the problems. The most important thing to try to do is have everyone be aware of the correct information and be on the same page as much as possible. 

Change your self-care choices to fit your life now rather than abandon them. I used to read often. I now only have time to read books about FASD, neurobehavioral methods, trauma, RAD and attachment, oh and tons of neuropsych evals and IEP’s. I miss reading for pleasure but have found a way around this. I listen to audiobooks while on my endless mommy taxi driving trips. I listen to my favorite radio talk show “Wait, Wait, Don’t Tell Me!”, pleasure books and FASD podcasts. At least I still get to hear the story, even if I am not sitting quietly to read it. Oh, and the book written by Jillana Goble is on audible, so you know I already bought it! I have listened to the introduction, and I am already hooked! I will add that with audio books, there is a lot to be said for the narrator. If you don’t like the voice, it is harder to listen. Jillana narrates this book, and I could listen to her all day! I will review this book in detail after I finish it.  If you are looking for a book suggestion, I always recommend “Nothing to See Here!” by Kevin Wilson. It is fiction, but I liked it most because as crazy as the story premise is, it had a lot of metaphorical similarities to the “Complicated Parenting Journey” that we are all on. 

I have recently taken some coaching courses offered by “The Adoption Connection”: Regulation Rescue, the Compassion Challenge, and From Apathy to Empathy. One great suggestion that she gives is to write down 50 points of joy. These are little things that fill your cup. My list includes sitting outside in my egg chair swing with my morning coffee, listening to MY music for a few minutes, a piece of chocolate (or a whole candy bar........), a leisurely walk on the bike path with headphones on and lemon-flavored water. She recommends trying to get 7 or so points of joy a day as items of self-care. That is surely easier for me than planning for nights out with friends, bubble baths, massages or manicures which are too time-consuming right now, and often is not enjoyable because I spend the entire time worrying about or getting phone calls about what is going on with my twins. 

Find appropriate coaching help or a support group. I have also joined several coaching groups over the years that I highly recommend. They are all similar and yet very different. I wish that I could give details to help you pick one, but that would be very individualized for each person. We discuss them often in our weekly support groups, where we, often will discuss aspects of each group. Email me at FASD@healthrecovery.org and I can try to lead you in the right direction. I wrote a blog about FASD resources on 6/21/2022 that you can use as a guide. There are many I am not aware of either. Find what suits your family.  There are free Facebook pages that are private, and then others are virtual support groups that have fees.  Only you can decide what you really need, but you will need some coach friends, for sure. 

Find a new group of friends. It seems that often while raising neurodiverse children, parents lose contact with close friends and family. As others move on in life as their children mature, we are left behind, unable to join, or are misunderstood. This usually means feeling lost and alone. Finding others who are on a similar path can feel so validating. I think that every new parent who has contacted us at massFAS for help and support has voiced a huge sigh of relief that they have finally found somebody who gets it. You can commiserate and feel heard and understood. Join our support group, find other parents on a similar path to yours. Look into coaching groups (more detail below). Our life is very complicated, and it feels great to find others who are also living that life.  

Find a “life group” and a “mom group” that you can rely on regularly. Robbie shared how she met a mom who got her into a book study “Make time for your life.”  She explained that she regularly meets with her “life group” and her “mom group”.   I have a key group of friends who really know me and my “complicated parenting journey”. I reach out to them often.  One of them (with children in their 20’s now) told me about how she felt like “an air plant” for years. She needed so much more but was living on air and a tiny bit of water for years. So, in closing I say, “Don’t be an air plant!” 

So basically, my overall message for you today is this: Don’t lose yourself in all of this. Put your oxygen mask on first, early and often. I forgot about me for a long time and have only recently been trying to get myself back to the old me (well, young me) who felt good, healthy, and strong. I am trying to do “after Care” because of the lack of self-care over the years. During my parenting journey, I have ended up having caregiver apathy, fatigue and complete caregiver burnout and blocked care. Remember, I am a nurse, so being a caregiver has been my MO for more than 40 years. I gave my everything until I nearly lost myself. Try not to let that happen to you. Find those 50 points of joy, write them down and refer to them. Make it a daily check list. And as I said already, “Don’t be an Air plant!