Well I want to talk today about a pillow epilogue. We all privately talk about it in our quiet haven but it usually does not become a source of theatrical agony. We had a friend staying with us for a few nights. He took one of the boys rooms and so a jolt of anguish immediately overtook my emotional emphatic child who was forced to share a room with his brother. You see we also took one of his pillows. The one he puts in between his legs. We have couch pillows and pillow pets but they were not his traditional pillow. We needed to use his for our guests. We went through a complete meltdown before I finally left the room completely exhausted and sick at heart. About 30 minutes later I went in to check on him and he was sitting in the same position with the same somber look. I sat with him and found out the main reason for the meltdown was he gets bruises on his knees if he doesn’t have a pillow. How do I explain to a child who sees life through his own needs and desires that there are other simple ways to fix a pickle? At !0:00 at night there isn’t. We laid his head down and he finally closed his eyes.
But, where do those emotions go? He did not get to let them out. How can he continue to live inside of his own head and not feel overwhelmed. I want to know what to do about it when we do talk. How can we describe our feelings and have a release of despondency? How does he feel about my Lupus and watching me change day after day? I am not okay with just explaining my symptoms and living this life. He is described as having a mental illness. No matter how you try to get around it, you can’t. Even your family cannot be truly honest with you having astigmatism like that. When he is mad it is not always because he is erratic. It is a real emotion focused on his judgement. How can we help? We could possibly slant our point of view and become nonpartisan to the simple pillow problems. He got through the night now I just need him to get through the emotions.
When you have Asperger’s you wake up every morning in a strange new world. You scan your room to make sure you still have four pillows. You look to see if your books are stacked neatly the way you left them. Your lampshade is tilted just enough to shine the light at the bedroom door. Your cars you lined up on the window sill are now neatly put in your blue bucket not the red one because that one is for your legos. Ok, it is now safe to climb out of bed. I watch Caleb walk over the dirty cloths and miscellaneous toys to go to the bathroom. It is the one certainty in the morning. He has lists in the bathroom, bedroom and kitchen to help him get ready and prepare him to leave at a certain time. His head stills spins widely out of control. We pick out his cloths the night before but he still forgets to change his underwear. The first time I told him to put on deodorant he proceeded to rub it on his entire body, face and all. He has a bucket with deodorant in it but he doesn’t remember to put it on. He has to make his bed but he forgets. Since he has already checked his pillows, to him his bed is complete. He has to pick up his room but he only sees his buckets are in order and lined up. He does not see the trash and cloths that I see. He forgets to brush his teeth so we have a toothbrush in the kitchen so it will remind him.
Being an Asperger’s mother makes me proud. I love his attention to detail. I love that he puts all of his energy into something he is passionate about. But with the teenage years creeping up on me, new problems are now arising. He has learned hopelessness. He lacks self-confidence and is beginning to act out. He has developed poor problem solving characteristics because he can’t handle situations. He has to be taught through every problem. He needs to know how to handle it and work through it so he can function with confidence and competency.
These children do not have a choice. We are their voices. At times they are truly victims of their circumstances. We are so tempted to lose our patience. But, to have mercy we need to have mercy on ourselves. All they need is encouragement and the love to persevere in any situation.
Lupus is one of the most cryptic, mystifying diseases on the planet. As a wife and mother I get up every morning to car pools and breakfast and plan my day around doing cloths and arranging dinner. The rest of the day, the part nobody sees, is sweatpants, naps and Netflix. The hardest part of lupus to me is having to explain to someone what it is. Lupus is so different for so many people. But as most of us know, I don’t look sick on the outside but my body is at war on the inside.
I remember as a child the severe leg cramps. I remember getting burnt too many times at the beach and winding up with blisters on my lips. I remember the mouth sores and being so tired some days that I could sleep forever! But I was a teenager. I lived in Florida. I was a swimmer, cheerleader, lifeguard, well and just plain busy. I had a convertible and I loathed in the sun for that perfect tan so I never protected my face. The one thing I did not think about was the photosensitivity to my eyes. We did not have computers when I was a teen but now if I write to long my fore flare begins.
My ten-year old has started to produce the same symptoms I had as a little girl. He has leg cramps and if he goes outside for any length of time his face flares so bad it looks like a second degree sunburn. unfortunately for him the number one cause of his fore flare is his gaming systems. If he plays to long he pops up with a nasty butterfly rash. A friend told me about Gunnar glasses from amazon.com. They will protect him from computer vision syndrome and cut back on the ugliness of the disease. I have not tried these yet but, I am very interested to see if they work.
Maybe that is why Lupus is so relentless. The outside wonders of the world, the vitamin D & C which claim to help depression and give you the boost you need are the very things that make me so sick. The entire atmosphere can bombard my body. So if you see that nice tan glow that makes us look healthy just remember it makes us feel horrendous and scared that at any minute we could feel the wrath of the warm, glowing sun.
Italo Calvino said: The more enlightened our houses are, the more their walls ooze ghosts. Image credit: “love Don’t live here anymore…” – © 2009 Robb North
I look at this house and see the western sun filling the windows with a warm amber glow. I see the loving family embracing the children running in and out. I also see the family very rich in love while only providing the bare necessities of life. My 10 yr old sees sadness. He cannot see passed the dilapidated house with no windows whose previous owners cold not have enjoyed the supplementals of life.
How could I as a mother have failed so much? I thought I had taught my children about selfishness, and having a proper attitude. Not to see things from the outside in but to look at a person’s heart to find their true identity. I write this as I hear my boys fighting in the next room as they are playing on their newest hankering, their “precious”. My husband calls the xbox the “precious” because if left up to them, my boys would play on it day and night. They began to plan their days around it. If I call them for dinner they eat as if they are mesmerized by the hum of the power button in the next room.
I begin to think though why not love this game? My son does not have to change who he is to play it. He does not have to please a loving member of the family so that he can hear them say I love you. He does not have to face the pain and rejections that occur when we are around family that may not have the patience to see him for who he really is. He sees this old house as a self-portrait. A strong sturdy shell but hollow inside.
My job seems to be a little harder at times. Every day is a challenge to keep him from slipping into a depression that others see as controlling and demanding. It hurts to be alone. It also hurts to walk into the lion’s den. Imagine the fear he feels not being able to spend time with family because he is afraid of what might be said to him. My younger son just knows that something is not right. But each of them know about sharing and love. We have a unofficial cookie ministry for their friends. If someone is sick or in need, we bake. I have one that cooks and one that gives them out. I truly have the best of both houses.
One of the most frightening things for me to do is to share my faith. It is not necessarily hard from a worldly view so much as it is with my own children. I have a child who lacks the social development of the children his age. How do you explain faith to a child who cannot look you in the eye and feel the emotional response that comes from trusting God? How do you explain to other families in church that your son does feel loneliness. He does not mean to be spontaneous or not respond to your emotions. The measure of his friendships are based on quality not the quantity. The quality of his relationships are strained daily even though everyday of his life has been a lesson in behavior or in social interventions.
I have to explain it in the easiest way I can for him. You see he knows that Jesus died for his sins but he has a hard time grasping the beauty of that concept. He hates the pain that Jesus suffered but, visualizing him on the cross between two criminals is the most powerful display of love he feels. Just to know that Jesus, while on earth could forgive sin and immediately assure one of the men eternal paradise shows him what he needs spiritually. I do not know if he feels the warmth and beauty of having God’s word to hold on to but I thank God that the bible gives us stories of unbelievable courage and love that I know he reads over and over.
Slaves used to sing a song “Follow the drinking gourd.” It was a code to follow the north star to the underground railroad. Frederick Douglas although an escaped slave himself, criticized the movement. He felt it would allow slave owners to be more aware of these escape attempts therefore making it harder for the slaves to escape.
A Domestic violence Hooligan is aware of all these past devastating tools. These slave owners will hold on to every ounce of your spirit. They will recite their criticism reiteratively. Many of us look back and feel inside our timid little hearts, descriptions from a person who has chosen to withdrawal from a family instead of giving the unconditional love the family needed for survival. This is a devastating blow. Words can be the most camouflaged thing in a house. They can pull a child apart and leave her empty. The only happiness she can feel is when words of criticism are spoken. “Her” words make her comfortable.These are the words she is familiar with. They pull her into a dark space in her mind. She feels powerful and rapacious there.
She will stay there. Her misery will grow and develop in more spaces where she will save her sadness. Look for God in your difficult places. He will never leave you or forsake you–Hebrews 13:5. We never have to question his words.