Living with and raising children with fetal alcohol spectrum disorder (FASD) is a wild ride! It presents challenges that go beyond the typical scope of parenting. I don’t know about you but many, many days I was (and sometimes still am) in survival mode.
What is FASD?
FASD or fetal alcohol spectrum disorder happens when the birth mom drinks alcohol during pregnancy. Alcohol can cause permanent brain damage which creates a range of symptoms physically, emotionally, and behaviorally. The symptoms range from mild to severe and do not have to have physical characteristics. FASD is often referred to at the invisible disability.
My husband and I have raised two children with FASD and survived! Yes, even when we didn’t think we were going to, we survived, and you can too.
As with everything we do, there are things we learned or wished we had done differently. Raising FASD is no different.
Let me share a few secrets I have learned.
Serve with Grace
Dishes, laundry, fixing meals, doctor appointments, therapy appointments, school, meeting with teachers, all the things. It makes for overwhelming, exhausting, never ending days. BUT you are MOM and you try to serve with love and grace.
Serving with grace means working alongside our children as we teach them the skills they need for life, being available and ready to meet their needs when they are incapable of doing it themselves.
I believe part of serving with grace is exercising a unique style of patience that involves expecting that our FASD children are going to need help and having the mindset that I am ready to assist even when I am ready to be done for the day. I can draw on God’s strength for that one last thing of the night that needs to be done.
2 Corinthians 12:9 “My grace is sufficient for you, for My strength is made perfect in weakness.”
Psalm 103:8 “The LORD is merciful and gracious, slow to anger, and abounding in mercy.”
Parent with Gratitude
You have probably heard that mindset is everything. I am going to confirm that, even and especially, in parenting children with FASD.
It is so easy to get discouraged with “misbehaviors”, volatile emotions, endless questions, misunderstandings, numerous instructions, and the list goes on. AND this is just at home!
In my effort to get the support I needed for my FASD children, I didn’t realize that I was developing a negative mindset. I was always in the constant state of fighting battles for my children and being their advocate. I was even struggling with some depression and didn’t realize it.
It wasn’t until someone gave me a small bottle of wild orange essential oil that I started to see what was going on. I started using this oil and felt my mood shifting. During the shift I became aware of the power of my negative thoughts. When I could replace a negative thought with a positive thought, my whole outlook on life began to change. I began to feel like I was showing up more for my children in that positive space they needed. My mood lifted and I had more energy.
Did it change the things I had to do each day or the range of behaviors and emotions I had to deal with from my children? No! BUT…I was in a space to see things differently and to be able to serve with grace and love.
Living in gratitude and parenting with gratitude WILL change how you are able to show up for yourself and your family.
So, how do we live in gratitude.
2 Corinthians 10:5 says, …bring every thought captive…
We can start by recognizing when we are thinking and saying something negative. While we may have to present all the negative to the professionals to get the support for our FASD kiddos that we need, we don’t have to live there.
Recognize your negative thoughts. Write them down on a piece of paper (I like sticky notes.) to help remove that thought from your mind.
Replace the negative thought with a positive thought. Also, write it down.
Example: Negative thought - I don’t know what to cook for dinner again. I hate trying to figure this out every night. Positive thought – I am so blessed to have a wonderful family to cook for every night.
Then the part I like best…take the negative thought on the sticky note, crinkle it up and throw it away. Take the positive sticky note and put it in a place where you can read it often and remind yourself of your blessings.
Gratitude journaling is another fabulous way to live in gratitude.
Count Your Many Blessings is an old hymn that reminds us to keep looking up. When we are discouraged and we look for the blessings, we can see what God has done in our lives.
It is super easy to start gratitude journaling. Grab a small notebook. Choose a time each day when you can sit down for a few minutes and journal. Add the day’s date to the top of the page and then list everything you are grateful for that day. Start with the goal to put 5 things on your list and work your way up. Some days you will have many things to list and other days may be a struggle. Just like we give our kids grace to grow, allow yourself grace as you purposely look for the blessings in your life each day.
Watch how your life transforms as you grow in gratitude.
Self-care for moms of FASD
Keeping our minds and bodies healthy helps us to have the energy and fortitude to take care of our families. I will admit that I am a work in progress when it comes to self-care. How about you?
It is not selfish to take care of yourself. Our bodies need rest and nourishment both physically and emotionally. Taking time for ourselves to feed the soul helps us to better care for our FASD kids and their needs.
- Morning routine – 15-30 minutes for scripture reading and prayer, personal development, gratitude journaling, exercise and movement
- Once a month day out with friends, shopping, scrapbooking, hiking, horseback riding
- Date night with hubby
- Watch a favorite movie after the kids are in bed
- Read a good book
- Dinner at your favorite restaurant
- Play a game or put together a puzzle
- Eat some chocolate
- Go to the spa or sit in a hot tub
Make your self-care something where you don’t have to think about your children or problem solve about their needs. It should be time to just relax and enjoy the moment.
Schedule your self-care so you can make it happen. Put it on the calendar!
Essential oils are the natural and aromatic compounds distilled from plants and a tool that drastically changed the environment in our home.
Both of my children with FASD have had trouble regulating their emotions. One in particular, had extremely volatile emotions when he was younger. These bouts of anger could be triggered in a second, usually caused by the word “no” or eating sugar. What was triggered in a moment could last for hours at a time. You can imagine the stress this created in our home or maybe you are experiencing it right now in your home.
You may be using meds to control these outbursts, I know we did for a very long time. But sometimes we still needed more.
Essential oils were life saving in our home. We use them to support healthy emotions, ease anxious feelings, uplift mood, support sleep, provide immune support, and so much more.
Raising FASD is challenging to say the least. The experiences you have with your child are unique to the disorder. Find a friend or support group where you can safely share your struggles and get encouragement for the task at hand. Being able to share the frustrations and vent as well as sharing the joys will help support your overall emotional health.
In choosing that friend who will be there for you, choose someone who will speak truth into your life but not criticize your parenting, someone who will be encouraging and who you can trust. If possible choose someone who has experienced raising a child with FASD but who is farther along in their journey. Finding that person will bring a ton of value and experience to your life.
COMING SOON: Creating Healthy Families Naturally will be offering a mentoring program designed for moms raising children with FASD.