Living Under Joon
I hear footsteps just above me, but I do not want to follow them, as they are trying to lead me astray.
I hear the door slam just beside me. I try to open it, but it seems to be locked.
The sink is leaking, the shower is dripping, the paint is peeling, and the screen is torn.
I watch the black and white television and cook in an old, black gas oven.
All the things that I fear have fallen into the atmosphere and I am just trying to understand.
I feel that I am losing control of the agility and balance that once surrounded me.
I cross the plank to get to the other side and jump safely on the ground. I take his hand.
An empty hallway leads to the broken window on a rainy night,
but I am faced with motherly strength and am ready for the fight.
Though life has led me on the path of the road less traveled,
I make my own footsteps in the sand and walk beside my son.
We stop to smell the flower in the barren sand.
Living under Joon helps me appreciate the left that goes right and the go at the stop.
I need help fixing the leaky sink and the dripping in the shower stall. I need a dropcloth for the paint and staples to fix the screen. And that's not all...
The Empty Plate
Hamburgers, hotdogs, chicken, spaghetti, macaroni-n-cheese, icecream, cookies, ect., are all foods that my son, Alden, has never eaten. This is the part of Alden's ASD, common in many children diagnosed, that is one of the most difficult for me. Sensory Integration Disorder is:
"a neurological disorder that causes symptoms of processing dysregulation. In individuals with SID, sensory information is received normally but perceived abnormally. The brain processes incoming sensory information incorrectly, resulting in hypersensitivity or hyposensitivy to common stimuli." -ehow.com
Alden has oral sensory where he is unwilling/unable to eat new foods or drink different liquids other than fruit juice or milk. Alden's current diet is Yoplait Yogurt (we should get stock in Yoplait), goldfish crackers (stock in that too!), occasional waffle, occasional pizza (specifically from a certain pizza place), occasional stage 2 Gerber mac-n-cheese, occasional stage 2 Gerber fruit, occasional rice baby cereal mixed with stage 2 fruit, and occasional McDonald's french fries. As his limited diet embodies him, amazingly, he is in excellent health. During the past two months, Alden had refused to eat anything but his yogurt and goldfish crackers. Losing weight and having great concern that the his brain processing was now greatly affecting his physical well-being, I took him to the doctor to make sure that there was nothing else going on. His pediatrician looked at me like I was nuts and just spoiling him, giving in to whatever Alden wanted. "If you just leave a plate of food for him and he gets hungry enough, he will eventually eat it." I am sure many of you with children with sensory have heard this before. It is the same with Alden's drinking. Alden still drinks out of a bottle at the age of 4. We constantly work with him on holding a cup to his mouth and have gotten him to take sips out of a "Lightning McQueen" sport bottle. Baby steps... "If you just leave a cup of milk for him and he gets thirsty enough, he will eventually drink it." "You should just get him a milkshake or some of that Ensure, peanut butter and maybe some toast." OK. First of all, Alden will not try milkshakes or even come close to smelling Ensure. He gags at the sight of peanut butter and won't even touch toast. During parties at school, Alden becomes extemely uncomfortable when they have treats (cupcakes or cookies) and even worse when they decide to decorate their own food. It literally becomes a painful experience for him. Apparently, I have one of the only children with severe oral sensory that my pediatrician sees. So, I tried to break it down for the doctor:
"Dear Doctor - Would you like me to place a plate of worms in front of you and expect you to eat it? If you are hungry enough, you will eventually eat it, won't you? You might gag or even throw up, but you are hungry. It looks and smells good, doesn't it? Come on, just try it."
Children like my son need lots of persistence, patience, and therapy. We don't always understand why it is the way it is, but it just IS. The medical community needs to also be informed as well. When so people were getting diagnosised with small pox or TB, it became an epidemic in the medical community. The medical community scattered frantically to find the causes and the solutions to help stop these epidemics. Why are Autism or Autism Spectrum Disorders not considered an epidemic in the medical community?
In the meantime, Alden is receiving speech and occupational therapy. We work on food exposures and oral muscle development. His favorite food is still Yoplait yogurt. Alden's plate will never be empty.
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TIPTOE ON EGGSHELLS
Tantrums are part of the territory when it comes to children in general, but meltdowns are encompassed by children with ASD. Avoidance and the Fight or Flight technique seems to be prominent in the world according to ASD. Patience, more patience, and patience that you didn't know you had seems to prevail in the chaotic course of the minds that have lost their way or have just been overspent. We can all relate to this at one point or another, that we all have autistic traits. We can all become overloaded when we are trying to fix dinner and the kids are fighting, the phone is ringing, and your husband is wondering if you know where he put his wallet. Ahhh... Imagine being in that state of mind 24/7. Utter chaos. How do we calm ourselves down? Well, we do things one step at a time. We turn the burner on low, we help the kids share, we let the machine answer the phone, and we find the wallet in the pant pocket that he wore yesterday. Done. Just as our children with ASD, one thing at a time - bringing chaos to structure.
I have tried many different things to help Alden make sense out of his world. We have tried "Heavy Work," which is a technique used to have Alden lift or push objects that may be heavy for him in order to give a sort of balance in his equilibrium - physically and mentally. We have tried the desensitizing brushing technique, where you use a soft brush to administer pressure on the legs, arms, back, and shoulders every two hours. We have tried the rocking technique where I scoop Alden up during one of his meltdowns - scooping at my own risk, and hold and rock him to calmness. We have tried breathing, jumping, hitting pillows, time outs, and just about everything in between. Sometimes the techniques work, sometimes they don't. Hugs tend to work most of the time after calmness is reached. Not just for Alden, but for me as well. Just like any child, we try and try again to figure out what works and we learn pretty quickly what doesn't. Many times I find myself tiptoeing on eggshells to avoid any sort of meltdown. I rephrase my language or I agree with Alden to avoid confrontation; avoid a misunderstanding; avoid my own meltdown. I suppose that it may get easier as Alden's vocabulary and ability to understand improves. I believe in modeling the behavior of what I expect from both of my children. However, sometimes the meltdowns are inevitable and we just have to do the best we can.
Alden has brought me strength in my parenting. When I see the light in his eyes, knowing that he understands me and knows that I will never give up on him, the meltdowns become endurable. As a person, I learn something new every day. As a parent, I learn that I love more every day. No longer tiptoeing on eggshells, I walk and try to leave footprints on my children’s hearts.
DEAR SANTA
Please bring us peace this year, as I could use some rest;
to untangle the webs of sleepy eyes, guide this soul to know what's best.
Please bring us gifts of hearts, as I may sometimes lose my way;
a joy, a song, a dance to teach my children about the spirit of Christmas Day.
Please give me strength to see, the labors of my love;
understanding the guidance that is really sent from up above.
Please help me help another, who may be misunderstood;
a child or friend of hallow sight to share in all that is good.
Please guide me through the thickest of snow, light the path you see fit;
As I get to give and am blessed to live, please let love never forget.
Please remind me how blessed I am, and help me count the stars;
for no one knows the struggles inside, it is better to keep them afar.
Please remind me, as I sometimes forget to breathe;
that the spirit inside projects the light to find the way to believe.
Please give to me the power to be the best daughter, wife, and mother;
to give my family the lasting love to be kind to one another.
Please harbor the thought to carry my loads in every passing day;
to bring the comfort, love, and joy found in the spirit of Christmas Day.
Oh, Santa, I know that my list is long, please forgive the plea;
I just needed to remind myself that the spirit of Christmas is really inside of me.
Thank you for listening, as it is time now for me to instill;
all the things I asked for, your spirit is giving me the will.
So Merry Christmas to all, sometimes we just need some love and hope to see;
that the spirit of this season comes when we can just find a way to believe.
Peace, Love, and Blessings,
Laura
