Author: Melissa Barber
Happy Eleventh Day of Thanks Everyone!
I bless God and give thanks every day for the wonderful, amazing, life-giving caregivers/babysitters that He has brought to my and Lilah’s life. I would not have near a mind nor a job (nor a living child for that matter) if I didn’t have them. I’m so appreciative of the great ones because I’ve known what it’s like to have quadruple the amount of horrible, ill-prepared and ill-trained ones.
Carmen West came into our lives when Lilah was about five or six years old and she was nothing short of a Hispanic version of Mary Poppins. I marveled at her style and her desire to be a great caregiver to my daughter. After running through about thirty aides, some of which didn’t stay after the first hour of learning Delilah had autism, she was the thirty first. She showed up to my house with games, puzzles, musical instruments and an assortment of other things and kindly told me to mind my business and get out of her way as she learned my daughter. I could tell, instantly, that she was the answer to my many nights of crying and prayer. Lilah, like most children, has a keen sense of genuine people, and took to her quickly.
Carmen loved on and nurtured my baby so much that she began to declare that Delilah was our baby and God’s answered prayer for the girl that she had always wanted. Like me, she spoke Spanish to Lilah to make sure she’d be bilingual; she complemented me in making sure that Lilah completed her educational tasks, ate all her food, was well groomed and well-mannered. Carmen vowed to be as helpful to me as possible and even flexible enough to work with my schedule as long as she could bring her son Brian with her to the job. She, too, was a single parent with a minimal support system who needed to manage all parental/familial duties, while financially supporting her family.
I understood her situation very well and told her to bring Brian with her as much as she needed. Brian became Lilah’s big brother. Carmen’s family accepted Lilah as the niece, cousin and granddaughter and spoiled her rotten. They requested Lilah at family barbecues and eventually she did over nights play dates with the other girl cousins. We even attended “grandma’s” funeral and sat with family. Carmen worked with me for years until her home health agency was removed from Lilah’s case. But, she is family forever and until this day, she calls to check on her niñita. There wasn’t another caregiver that I was willing to trust with my baby for a long time, if it wasn’t the same quality of care that Carmen gave.
Eventually, Lilah went to an afterschool, Services for the Underserved, for seven years where some of the staff took care of my baby like she was their own (partly because they knew I would kill anyone who didn’t bring my child home the way I sent her out into the world but also because they were really wonderful people.) Nikki was like my daughter’s second mom. With every seizure, she took care of Lilah (to the extent that Lilah would allow her) just as I would. Alton loved my baby so much and thought Delilah was his daughter that he would argue me down about anything concerning her. (I had to often remind him that I was her real parent.) He would even volunteer to be the driver who took the children home in Delilah’s program because he wanted to makes sure she got home safely every night. My daughter was his little princess (and she still is!) As I reflect on the many wonderful people that came into our lives and minimized my worry or concern for Delilah when she wasn’t with me, I know that I am so blessed.
Fast forward several years later, my daughter met her best friend’s mom (and my best friend)Ms. ReRe. We love all things Ms. ReRe! She is one of the only persons I know who does more crafts than I do and is the best home schooler on the face of this planet. Irene saved my life more than a few times and has shown me how to reach toward making Delilah a more socially independent person (not that she is not independent enough in so many other areas of her life already!). She would babysit Lilah on all the many federal and miscellaneous holidays that I still had to work or when she suddenly had an unexplained day off from school. She is one of the only people that exactly stuck to Lilah’s keto diet and kept my baby in ketosis for me. At the last minute, when some level of craziness took place and an expected babysitter didn’t show, she took the reins and let me know she had my back. She taught Lilah a level of independence and security and got her hooked on everything girl scouts. I didn’t realize how good I had things with Irene in my corner and as part of my support system, until everything came crumbling down. At the beginning of this year, Irene had two strokes at the same time (one hemorrhagic in the frontal lobe and the other ischemic in the occipital lobe). Not only is she a walking miracle (because there is no way she should have gotten up from that surgical table), but her rehabilitation and recovery have been so awe-inspiring to witness. Nonetheless, while she is recuperating, I have realized more how important it is to have a support system and reliable caregivers who love and will care for Delilah just as much as I do. Outside of my super awesome cousin, I have the hardest time finding a caregiver that can take her place.
My cousin, who is awesome with Lilah, usually stays with her for me too, when I have to travel outside of the state or country, work late or have evening meetings. But, since she works in retail, there are several times throughout the year that she is absolutely not available to me (esp. during the thanksgiving/Christmas through New Year holiday season.) Recently, when my cousin was not available, I asked someone else, who I thought was capable to babysit Delilah. It turned out to be disastrous. I came home to a broken laptop that was destroyed as the person was physically fighting with my autistic child. I found out that while the caregiver and Delilah were fighting, she was verbally abusive and bordering on being physically abusive to her too. (I was so livid and everything about my demeanor screamed that I was in rage mode until this person got out of my house!) I knew this incident was going to take me back to being the dynamic duo (of Melissa and Delilah) no matter where I had to go or what I had to do. I spent several hours, upon my return that day, setting up a nurturing and loving environment for Delilah to undue any damage that may have been done with that negative experience. (As my friend once told me, I may have to prepare a cookie jar of savings for therapy later as she has done for her son.)
I long for a decent caregiver/babysitter and I know that I am not alone.
Today, I’m highlighting the National Center on Caregiving (National Center on Caregiving | Family Caregiver Alliance), which is a branch of the Family Caregiver Alliance and works to develop high-quality, cost-effective policies and programs for caregivers in every state. They have a free tool called the Family Care Navigator which provides an online guide to help families locate caregiver support programs and resources for older or disabled adults living at home or in a residential facility. It also includes information on government health and disability programs, legal resources, living arrangements and more. Please share this resource with all the many families you know who need this service and information. Don’t forget to donate to them to help spread the depth of their programming.
National Center on Caregiving | Family Caregiver Alliance
Have a Great Day of Thanks!