Thursday evenings you will find Alexia* spending time with the Family/Caregiver group at The Independence Center. Despite long days of caregiving for her daughter Brooklyn*, Alexia doesn’t miss this time to connect with others who face similar challenges. Connecting with the group has encouraged Alexia to see the positive strides that have been made and acknowledge the work that both she and Brooklyn have done and how far they’ve come. While there is still work to be done, giving credit where credit is due and focusing on the positives for Brooklyn have helped shape Alexia’s new perspective of caregiving.
Alexia’s story begins all the way back with her pregnancy with her daughter Brooklyn. The pregnancy was difficult and trying. When Brooklyn was born, it became immediately clear to Alexia that there was something different about this baby. Brooklyn required constant consolation and was not as happy as an infant as her siblings had been.
“She was constantly crying. Constantly needy. She was one of these kids I could not put down. I could never understand… it was always a struggle because taking care of her was like taking care of three or four kids at one time,” Alexia explains.
Brooklyn’s growing up years consisted of behavioral issues that were difficult to navigate and put considerable stress on the family. Alexia describes her as the center of attention in the family due to the level of behavioral issues presented. Alexia read books, investigated the possibility that Brooklyn had food allergies, and visited various doctors who weren’t able to help. Simply put, Brooklyn was a handful. And Alexia had no support.
Life does not happen in a vacuum. Alexia’s story is compounded by the events after 9/11. As a senior military wife, she held the family together through multiple deployments and was called upon extensively to help troops’ wives at home, including attending many funerals. Raising her children, including Brooklyn, should have been a full time job, but instead it became a side job as she was called upon by her husband Bob’s service in the military.
“The war started coming into our house,” Alexia mentions, “Families coming to me with problems with their children, wives going into mental institutions.”
Maxed out physically and emotionally with her obligations as a senior military wife, Alexia wasn’t able to pursue getting answers for Brooklyn during this season. Brooklyn’s struggles in school and behavior intensified.
The war ended and Bob returned with severe PTSD. Ultimately, this led to Alexia seeking counseling help for the entire family. It was this renewed pursuit for help that led to Brooklyn’s testing and ultimate diagnoses. Armed with these diagnoses, Alexia began seeking help for Brooklyn with a fresh perspective.
As Alexia has walked this road with Brooklyn, she finds that things are constantly changing with Brooklyn’s needs. Things that “worked” previously to help keep Brooklyn in a safe and stable place of relative independence don’t always continue to work and adaptability is key. “My main goal is to get her to be able to live as independently as possible without me,” Alexia states without hesitation.
“I finally made contact with The Independence Center and started coming to the Thursday Family/ Caregiver Encouragement group. I needed help….some pieces were missing,” Alexia tells. “Coming to The Independence Center has helped me navigate with a different way of thinking.”
“The other part to this is taking care of myself,” Alexia acknowledges. “She is probably more capable than I think she is. I am challenged [in group] in a positive way to have more accountability and awareness to not beat myself up.”
Alexia has four words of wisdom that she would give to anyone navigating the journey of caregiver to a family member. If she could leave a legacy for other caregivers to embrace, it would be:
- Go with your gut.
- Seek counsel and advice.
- Get someone in your corner.
- Make the time to step out and rest.
The Family/Caregiver Encouragement group meets every Thursday from 5:30 – 7:00 PM at The Independence Center, 729 S. Tejon St, Colorado Springs, CO 80903. If you are a caregiver or family member of person with a disability, you are invited and encouraged to attend.