To Honor Each Other
(THEO)
Having a sibling with Fetal Alcohol Spectrum Disorder (FASD) can significantly impact the lives of children who do not have FASD. These children often face unique challenges and stressors that necessitate additional support to ensure their well-being and development. Rooted in OME coaching philosophy, it focuses on self-awareness, present-moment, and interconnectedness. There are 4 different tracks by age groups and a required caregiver track for children under 18 years old.
15-Week Curriculum
Here are several reasons why children with siblings living with an FASD need support:
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1. Emotional Impact
• Stress and Anxiety: Children may experience increased stress and anxiety due to the unpredictable behaviors and needs of their sibling with FASD.
• Feelings of Neglect: They might feel neglected or less important as parents often need to dedicate more time and attention to the sibling with FASD.
• Confusion and Guilt: They may feel confused about their sibling's condition and guilty for feeling frustrated or resentful.
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2. Family Dynamics
• Role Changes: These children may take on additional responsibilities, such as caregiving roles or acting as mediators in family conflicts.
• Parental Attention: The demands of caring for a child with FASD can strain parental resources, leaving less time and energy for the other children.
• Differential Treatment: They might perceive that rules and consequences are different for them compared to their sibling with FASD, leading to feelings of unfairness.
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3. Social and Behavioral Challenges
• Isolation: They might feel isolated from peers due to the unique challenges their family faces.
• Behavioral Imitation: Younger siblings, in particular, may imitate the challenging behaviors of their sibling with FASD
.• Bullying: They could become targets of bullying or ridicule because of their sibling’s condition.
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4. Educational Impact
• Distraction: The chaos and stress at home can make it difficult for them to concentrate on their studies.
• Support Needs: They might require additional academic support to cope with the distractions and emotional toll.
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5. Development of Resilience and Empathy
• Resilience: Learning to cope with the challenges posed by having a sibling with FASD can foster resilience, but it also requires guidance and support.
• Empathy: While they may develop a heightened sense of empathy, they also need help understanding and managing their feelings.
The Story:
To Honor Each Other
Posted July 11, 2024 - Hi Community! I know I don't get on here much, but I have been struggling with real life over these past 6 days, not sure what to make of the experiences. I live my life, and tell others, that there is a learning in every situation, even the one's that are sometimes the most hard to bear. The one's that take our breath away. I know that the amazing woman I have become today is a direct result of the culmination of my life experiences. And here I've been, not sure what next step to take. Today, I know. And so here I am.
I am a single mother of four outstanding and fantastic children. My oldest is my BS-age 19, then my BD-age 18, my AD-age 13 and my AD-age 11. My two youngest girls are diagnosed with an FASD. At the time when the social worker reached out to me about my 13-year-old daughter, she was just born, less than 24-hours old. I had just bought a house, and we had room for one more. Then, when she was just 36 hours old, she came to live with us. It was a joy to have a baby in the house, and wonderful to watch my other two children learn to be siblings and want to participate in her care. And then the social worker called again about 3 and 1/2 years later because her baby sister (now a toddler) needed to be placed in a home. And so we welcomed her right into our family, too.
As my two youngest grew, it was clear there were some developmental and cognitive challenges and delays. Life became a lot of appointments and assessments and tests and occupational therapy and speech therapy and in-home staff and psychotherapy and extra doctors visits and ER visits. And then things would randomly disappear. My two oldest would always complain of missing candy or toys. My diamond ring even disappeared once (thank goodness for an honest neighborhood mom). And all the fruit flies...where in the world were those coming from? Yep, the drawers and closets and in the corners and the hidden lunch box under the stairs behind the furnace where it is too narrow for me to get into. The soiled clothes hidden with clean clothes, or under the sinks or in the decorative baskets or just left on the bathroom floor.
Then school-this IEP stuff, man! Yes, there are so many ways to advocate and success can be had; however, why does it have to be so hard and challenging to get things done just to help a child that truly needs some help and support? What do you mean, Mr. Principal, when you say, "We are just trying to determine if it is her FASD or just her being her..." Are you serious right now? And the bullies. And the mean girls. Even the boys trying to take advantage of my girls, getting them to steal and buy extra lunch food on their lunch accounts. Confusing them because they are so friendly at first, but then when my girls want to go around them and participate with them socially, the other kids complain they are bothering them and they start to treat them horribly! The school staff don't see it, so they think I am blowing smoke in their face and they just ignore what I am saying.
I have struggled most learning how to love my littles through their trauma and their invisible disease. When my youngest picks up chairs and throws them, bangs her head on the doors until the force from her head forces the doors open and they just break off the hinges, or when they call me a "b" word and tell me they would rather be with their birth mom, or when they hit each other and call each other names, or start a fire, or wipe feces on the bathroom walls, or try to cook Lucky Charm waffles and put the waffle maker back into its original box-with the batter in it-and it just sits there for weeks (or maybe even months). I prayed so many times for patience and understanding. To accept that much of this is out of their control, even though to me it "appears" that they know what they are doing (when they don't), has been the hardest thing. To love them even in my pain. To wait for the tantrum to be over and ready with a big, safe hug, to remind my girls that I love them and they belong with me. I am challenged with this every day.
As my older children came into their late teen years, they started to share with me their own experiences of what it was like to have the girls in our family throughout their lives. As a mother, it was so excruciating to hear their experiences of the girls requiring them to grow up too fast and fend for themselves. They didn't understand why the consequences for the littles were different from theirs. They experienced me being harder on them than on the girls, and that they thought at times I maybe didn't love them and the girls were more important. Hoo! That was hard to digest. I wasn't mad at them for telling their truth. I respected them, and I am so thankful my children are open and talk to me. I know, that even though my intentions were only (in what I thought) in the best interest of everyone at the time, they experienced it from their own perspectives and it was okay. And I know I have done the best I can to raise and love my children. No one can't tell me I'm not super mom! Doesn't mean it still doesn't hurt.
(almost there...)
My son, he has struggled much of his life, not only with the littles, but also being the oldest, being the only boy, and in many ways being my Guinea Pig as I learned to be a parent. He has experienced immense loss over his life. I think in many ways he resents my girls (all three of them) for stepping into his way. He has struggled to build strong relationships with men, and friendships just in general. He struggles with his identity and feels lost out here. He especially feels the girls have taken me away from being there for him, and he feels alone. So when he asked for a dog last year, it was a no-brainer for me. He was set on a Toy Poodle. He researched and we found a breeder in Ohio. September 20, 2023 we drove 12 hours to pick up this itsy bitsy, 8-week-old creature that my son named Theodor Bruno Crawford, the greatest most sweetest little guy. I was so happy for my son to finally have something for himself that he could learn to love and to experience the kind of unconditional love only our pets can bring to us.
Sunday, July 7, 2024, my baby girl snuck out of the house (like she is known to do) and took Theo with her. I called for her at some point and when she didn't answer, it occurred to me that she had left. I got an inkling to go outside and get them, and then it quickly passed into, "No, she'll be back," as was always the case. Fifteen minutes later she comes home screaming at the top of her lungs that Theo died, that he got ran over by a car. He got away from her and ran right into the street. She couldn't grab him and she screamed and no one helped her. She said she knew he was dead because she saw the life come out of him, and she fell to her knees shrieking his name. As soon as I heard this, I knew right away, and I didn't want to believe it. Not just because my Buddy Grandson died, but because I didn't want my son to experience another loss, let down again. I didn't want him to hate his sister (and I didn't want her to hate herself and think it was her fault), and I didn't want him to hate me. I'm still seeking out the learning here, and how to love them both through their own heartaches and how to show them how to love each other. And to forgive myself.
I know now what I get to do. I want to start a group for siblings of children with an FASD. I am a coach, and I want to use the coaching model I am certified in to support our other children who do not live with an FASD. I have looked for these over the years, and have just not found them. Maybe they exist? The uniqueness in this group is that we also will address FASD education, as well as the intersections of FASD and trauma, multi-racial and blended families, adoption/foster care, bullying, cultural components, conflict resolution, and sibling advocacy, to name just a few. We want to support our children to support their siblings creating a strong and loving relationship. They will learn through group coaching and peer coaching. They will learn self-care and self-love, and they will learn to be a positive impact in the lives of others. I will name it "To Honor Each Other (Theo)" because we are all whole, perfect and complete. We all deserve kindness. We all deserve to be loved and to love others. We all deserve support, to know that we matter, and to be seen and heard as our true authentic selves.
Thank you for such a space to share.
**Exhale.**