Caregiver Life (Autism Awareness)

In the spirit of Autism Awareness month, I wanted to feature an author who can speak on this very topic. She's a single mother and caregiver of two sons (her youngest suffering from Cerebral Palsy). Her adult brother has severe Autism and Epilepsy. More could be said, so I'll let this author take over. Everybody, show your love to Monique Duell.

My life is anything but ordinary! I am a stay at home, single mom...for now. I have 3 extraordinary children that God has given me stewardship over. I have a funny, smart 17 yr old with ADHD who loves video games, a 14 yr old son with Cerebral Palsy who loves God, singing and macaroni & cheese, and I am caring for my 37 yr old brother who has Autism/Severe Retardation & Epilepsy, who lives in a 24-hr full-time care facility, is mostly non-verbal and doesn't even know what day it is. He makes noises, rocks back and forth and shakes his hands. Welcome to my world! They are all a joy and a handful at the same time. For about four years or so, in addition to raising them, I also had custody of my little sister who was suffering from an autoimmune disease and Ulcerative Colitis. My mother passed away in March of 2006, 2 months after her 52nd birthday, and I refused to allow my siblings to go into the system. No one else in my family came forth to take them in, which is sad because our families are big. It was never a second thought for me. So, here I was, from 2006, until 2011, with a house full of different needs, emotional issues and physical handicaps with NO support or financial assistance from their fathers. No calls, no visits, nothing! My youngest son and my brother requires 24 hour care. My son who has CP is in a wheelchair, can't walk, dress, bathe, brush his teeth or go to the bathroom. Everything I do for myself, I have to do for him-every single day! My brother, however, can do all of that, but like my son, he can't express specific emotions, like pain, sickness or if someone is hurting them, etc. They can express when they're hungry, tired, or scared. Couple that with my brother having seizures, and you have a whole new situation. He has no idea what is happening to him. I’ve been asked, what life is like as a caregiver?

Well, it’s busy, tedious, rewarding, confusing to some, requires faith, patience, a prayer life and a relationship with Jesus Christ! There’s no way that any human could withstand what I have endured in their own strength. You’d be dead, crazy or hospitalized. Since my brother and sister are out of the house, life has calmed down significantly. Before then, I spent at least 4 days a wk at a doctor’s office or a specialist’s office, and that was just for my sister! She was on 15 medications, plus injections and infusions. My son had heel cord surgery to lengthen his tendons due to spasticity. He was casted from hip to feet for 3 mths. We had a special bed and chair delivered to our home for him. After they removed the cast, he had intensive therapy because he had no muscles. It was very painful for him and for me as his mother to watch him go through that. We take too much for granted! I had to baby proof my home for my brother because he would do whatever his mind told him to do. Any little object could attract his curiosity and he’d take it and do God knows what with it. He was very creative. He took my radio apart and put it back together! My brother would just go around the house, searching for something to get into. One day, he took a pencil sharpener that was in my arts and crafts case, and shaved half of his beard with it! He doesn’t like hair on his face or head, and I guess I took too long getting his hair and beard cut. My oldest son was acting out because he was jealous. My time was taken, and he felt left out, and rightfully so. I was just ONE person, trying to hold our family together. I had to find a balance. I learned how to take time with each of them to do things that they enjoyed. There was never a dull moment in our house. Meal time was a chore too. While three of them (my oldest son, brother and sister) could eat whatever I cooked, my youngest needed foods that he could manipulate with his mouth. He doesn’t chew like you or I. He kinda works his mouth until he softens his food, then swallows. He, and my brother eats too fast. I used to have to sit with them and verbally tell them to slow down. Now, I got the look! Then, there were the different attitudes and behaviors I deal with. Having two of them not being able to express normally, I have to watch carefully their body language and what they don’t say. I have to do that with my oldest son. He’s at that age where talking to mommy is awkward. As long as they are fed and entertained, they are good. My brother is so quiet, you wouldn’t even know he’s in the house. He even walks quietly. My youngest son makes lots of noise, all the time. He suffers from echolalia, which means he will repeat a word, phrase, or song over and over again until he gets tired. My son also jumps when certain commercials or jungles come on the radio or TV. I still have let to understand why. The doctors tried to explain it to me, but I can’t explain it to you. Family TV time is difficult because not only do I have to watch what came across the TV, but his echolalia makes it impossible to enjoy our favorite shows. I have to record what I like and watch it when he goes to bed. Bedtime is a challenge too! My brother I used to going to bed at 7 on the dot, and gets real cranky if he doesn’t. My youngest son goes to bed and literally starts screaming and yelling noises, songs, words, etc. til he tires himself out. Now that he is 14, he has discovered his male part, so every night, he attempts to break in his diaper to play with his male part. Sometimes he succeeds because he is soaked in the am. This means that I have to do laundry more than I would normally. I have to stay awake until he falls asleep to make sure that he doesn’t have a bowel movement because he can gotten into his diaper on more than one occasion and, well, you know the rest. I woke up one day mortified! He had feces on the wall, in the bed, on his face, on his head, he had it everywhere. This is the embarrassing part that no one wants to talk about, but if my story helps someone else, to God be the glory. I called his doctor because I was afraid he’d harmed himself by consuming it. I was scared, crying and feared CPS would come in and take him. I have sense then developed a way to secure his clothing to prevent that. He has to wear clothing with drawstrings. He can only manipulate his left hand fully, so this works in our favor. His right hand had surgery to extend it from being bent, by transferring a tendon to it. He still keeps his fist closed until he reaches for something. Every now and then, he has temper tantrums when he can’t have his way or I take too long getting him something. He will either ball up his fist or open handedly slap himself in the face repeatedly while crying or screaming a word or a
phrase. When he or my brother was overstimulated, I would turn on worship music, watch sermons on TBN or the Word Network and pray. It calms them right down and I continue to do this in my home. I’ve taught them how to pray and flow in the Spirit by doing that. We have morning devotions before my sons go to school and when my brother visits, we do it before he leaves. I can only tell you that God kept me and is still keeping me despite the fact that my brother and sister have moved out. I still have two healthy, busy teenagers who keep me on my toes. As I mentioned earlier, financially, my sibling’s father never paid any child support despite me going to court several times. My sister’s father did bring her clothes and money a few times. It was her grandfather who financially helped me get her settled when she came to live with me straight from the hospital after she was released for a life-threatening clot that almost cost my sister her leg. She had nothing but the clothes on her back! My son’s father pays child support erratically. He will work for six mths to a yr, then be unemployed for a yr. Thankfully, my sibling’s receive death benefits from my mom. They are well cared for. My son are well cared for too! I have a support system who makes sure that they don’t want for anything. God is an amazing God! He will provide and help you if you trust Him. I am not a one woman show. There is always an appointment to go to, a service that needs to be rendered for one of them, a meeting or an IEP that needs to be attended and always something to pray for! My life has a whirlwind of ups, downs, struggles and triumphs. I wouldn’t trade my life for anything. I have gained a wealth of knowledge that I now share with others. I have grown as a woman and as a mother. I am closer to God than I’ve ever been and He is rewarding me handsomely for my faithfulness.

These days, things have definitely shifted. I have become an Author. I have two books, currently on Amazon, Google Play, and Ibooks. They are called, “How Do I Handle a Special Needs Child?” and “Handicapped Mom: Lessons I Learned from Cerebral Palsy.” My first book is an inspirational how-to book that deals with overcoming the negative emotions we face as parents, caregivers, and guardians, such as guilt and depression. My latest book is my testimony about some of what you just read, plus more! I promise you that your mouth will drop, tears will fall and your hands will go up! I will never be ordinary. God has made me extraordinary!

Amen!

Monique's books are available on Amazon/Kindle, Google Play Store & Ibooks. Follow her on social media:

Twitter: @moniqueduell

FB:facebook.com/imjusmo

Blessings:

The Mayne Man