Day 20: Parents/Caregivers of Special Needs Children
Luke 9:37-43 A man in the crowd called out to him, “Teacher, I beg you to look at my son, my only child. An evil spirit keeps seizing him, making him scream. It throws him into convulsions so that he foams at the mouth. It batters him and hardly ever leaves him alone.
2 Samuel 4:4 Saul’s son Jonathan had a son named Mephibosheth,[b] who was crippled as a child. He was five years old when the report came from Jezreel that Saul and Jonathan had been killed in battle. When the child’s nurse heard the news, she picked him up and fled. But as she hurried away, she dropped him, and he became crippled.
Song: You Sustain
Today, I give thanks for all the caregivers and parents of special needs children and adults. You are all my superheroes and all receive a special badge of honor in my book! I know that it takes a special person to have the love, patience, and nurturing spirit that is necessary to care for a loved one that requires extra attention constantly. You all, so gracefully (or maybe not so gracefully), tolerate the stares and judgement when your loved one is on sensory overload and in full crisis-meltdown mode; you’ve had to and learned to sacrifice your time with friends and family because they reject the uniqueness of your loved one; you fight with social service agencies constantly, while being denied repeatedly the required services you need to care and provide for your loved one. You are 24/7/365 standing in the gap to pray for, love on, and encourage your loved one to be their greatest selves, when no one else sees their potential. You are a superhero!
I have an intelligent, beautiful and amazingly gifted teenage, autistic daughter, Delilah Christina. As I have mentioned before, rearing her has been the most difficult and humbling experience of my life. We’ve had many mountaintop victories and many valley low defeats. I went from seeing her typically growing and speaking around “three-ish” (after three years old and before four years old) to becoming a completely aphasic child who eventually developed cognitive, sensory, and social “malfunctions.” I had to teach my child, who was completely non-verbal, how to communicate her needs and wants. After 15 years, we are still in that process. (I told you it takes a special person with real patience!) As a parent, I’ve watched my daughter suffer through sickness, like the father in our scripture reading for today, as well rejection of being left out of many family and friend circles, which I know that you’ve gone through as well, because you’ve told me your experiences.
Delilah Christina was denied social services more times than I can count on my fingers before getting the Medicaid to receive her social services. I know you, like me, have had to miss several days of work to sit in a social security office ALL DAY (combining all of the social security offices into the Concourse Village office was an absolutely dreadful and terrible idea!) to be served and address a concern for your loved one. You’ve also probably got wrongly cut off for more than a year and had the representatives use COVID and office closures to cover up, justify, and get away with stealing from your loved one too. (SMH!) You’ve had to fight for the basic necessities of education, forget about the speech therapy, physical therapy and occupation therapy services that the NYC DOE tries to skip out on providing for your loved one as well, although you’ve sat in IEP (individualized educational plan) meetings that legally mandate the DOE to provide these services. If your loved one requires a restrictive diet that cost out the whazoo to maintain his/her health, like Lilah, I’m 99% percent positive that you did whatever you needed to do, by any means necessary, to make sure that your loved one got the nutrients that he/she needed.
You more than likely have to deal with physical abuse and have become an expert on how to effectively restrain, without hurting or abusing your loved one, during emotional melt-downs. I have all kinds of scratches on my hand as a result of emotional or irritable fits. If your loved one has a medical condition that requires a great deal of vigilance, I’m certain that you have gone plenty of nights without a minute of sleep. Depending on the level of services and supports you have, you may get a moment to breath. But, most likely you don’t have those services and don’t have the breather either. And it is just by the very hand and grace of God that everyone stays alive and no one goes to jail at the end of the day. (Lol! Right, Ms. ReRe?)
You have developed a tough skin. You’ve learned how to translate “gibberish” or looks. You’ve become a gesture expert. You have lost friends and partners in the journey of raising your special-needs loved one. You’ve also gained a family of support that have nothing to do with your blood/biological relatives. You’ve learned to have peace of mind, even after hearing something repeated a million times. You’ve learned how to be firm, yet loving. You have learned how to doggedly fight for everything that belongs to your loved one. You’ve learned how to have good, deep-down guttural cries with your loved ones as they suffer through something. You have learned to tap into your loved one’ deepest potential and uniqueness and draw it out. You’ve learned to hug tighter, give multiple (embarrassing) kisses, cuddle longer, sing and dance to new, favorite music and do a million other things that you probably don’t like to do, just to appease your special-needs love one. You are a Rockstar and absolutely amazing! Keep your head up because you are noticed and loved.
Today, as we give thanks for the parents and caregivers of special needs loved one, I invite you to do something really nice/special for a parent or caregiver of a person with special needs. They need it! I also invite you to donate some of your funds to and tell another parent about the Bronx Parents Autism Support Circle (http://bxpasc.org/). This is an amazing group of families who provide love, support and resources to parents/caregivers of autistic loved ones. We can be found on Meet-up and Facebook as well. If you know someone that needs love, help, and resources to navigate dealing with a family member on the autism spectrum, please point them in our direction. Our next zoom meeting is on December 14th! See you there.
Have a Great Day of Thanks!