I had to go to the State to ask for respite services today. Sharing my letter in case it may help some of you. Over the last year, I have been called in both a derogatory and congratulatory manner, a celebrity in the autism community. Please read this. There are no celebrities among us. NOT A ONE, who is truly committed to this cause...is a...celebrity. Servants and activists are we. And this Thanksgiving, I am extremely grateful for my brothers and sisters who are fighting this fight with me, who will not give up until our children are FREE to receive the medical treatment that will remedy what our food and preventative medical care have done to them. Happy Thanksgiving, Revolutionaries! Dear ******, I am writing this letter in the hope that I may obtain in-home help/services/respite for our severely autistic son, Noah. Noah turned 8 on September 9, 2014. Since Noahs diagnosis in April of 2008, my husband and I have done everything in our power to help him advance, to improve his health, and see to it that he receives a proper education and suitable medical care for his several co-morbid conditions. Unfortunately, we are at a crossroads in terms of meeting the demands his condition has placed on our family. Weve been to Cleveland Clinic for genetic testing and evaluation to Texas, to see our pediatric gastroenerologist, and to Arkansas, to see our mitochondrial specialist/pediatric neurologist. His list of local physicians is too lengthy to mention--but will of course, be provided upon request. All these visits yielded results that have come at a tremendous cost to our family financially, emotionally, and spiritually. While our visit to Texas in 2013 proved most beneficial---under his care Noah was finally potty trained (at the age of 6.5)--we still face many daily challenges due to Noahs biochemically triggered behaviors and epigenetic vulnerability. At present, Noah does not respond to his name. He often elopes in public. When he cannot explain what he wants, he screams either until he loses interest or his needs are met. He often engages in the following behaviors: Crawling on the kitchen counters Walking on the stove Pouring water on the floor, over his toys, on furniture Putting his clay and toys in the microwave Opening the oven Opening the refrigerator and pouring out all the liquids it contains Shattering glass/lightbulbs Repeatedly opening and closing doors Turning lights and fans on and off Stripping all the beds in the house Overturning laundry baskets Emptying drawers and cabinets of their contents Turning faucets on and plugging the sink so the water overflows onto the floor Plugging toilets with toys Trying to consume non-food items Pulling the stuffing out of pillows and couches Eloping from the home and car Destroying his siblings toys/schoolwork/property Ripping the pages out of books Screams uncontrollably for long periods of time regardless of what parent or caregiver may do to help Noah often attempts to elope from our car. Our home has been destroyed, holes punched in the drywall, doors ripped off their hinges, door knobs thrown over landings, where his siblings, Madeleine, now 10 and Liam, 6, sit playing. Madeleine and Liam greet Noah everyday by saying Good morning, Noah as they quickly pass him, guarding their torsos and faces. If I am not vigilant over his younger brother Liam, he will bite and punch him repeatedly, in an effort to provoke him to play. Liam of course, often runs away crying and screaming. But, when we are in the car driving it is very hard for me to intervene and get Noah off his brother in a timely fashion. Liam will scream Mom help me please! as his brother bites his arms and jumps on top of him; but unless I am at a red light or a place I can legally pull over, he has to defend himself. Sadly, Noahs school, the Academy of Excellence In Learning in Mokena, unexpectedly closed this year. At the last minute, the district of New Lenox scrambled to fit all the kids placed there into their pre-existing programs. But, because Noah is so medically compromised (he is on a pharmaceutical grade liquid diet)lacks meaningful language and behaves erratically, I did not think public placement would be suitable for him. While public education is our ultimate goal for Noah, he presently cannot control himself in public or in unpredictable situations. His fight or flight response is something we have not yet been able to resolve and continues to be problematic on a daily basis. In the past three months I have attempted to handle the following issues on my own: On a trip to the mall Noah unexpectedly saw some Disney cars at JCPenney. I explained we could not purchase them today, we were buying uniform shirts for his brother for school, but if he could control his behavior until we got out of the store, I would take him to get clay (he loves to sculpt). He tried so very very hard. He started crying. I saw it was escalating beyond his control and left the shirts on the counter and apologized to the salesperson. He ran to the escalator before I could stop him. I caught up with him and he dropped just as we were about to hit the main floor. I lifted him up and he kicked me in the head just as we passed over the last disappearing step. Several patrons stood aghast as he screamed and flailed help me!. When he finally stood on his own he took off again. I ran after him, caught up with him about 6 stores down and he dropped to the floor again, kicking me every time I attempted to bring him to his feet. We were finally ushered to our car by security who arrived after many screams for help on my part. He eloped from his seat belt 8 times on the way home, threw his Neocate splash (his pharmaceutical juice box) at the drivers side window while I was driving on 355. The thick white liquid completely obscured my vision. I used my purse to wipe it off while he threw his shoes at my head. One hit my cheek, one wedged between the dashboard and the window. I was so truly grateful his siblings were not with us. We see a speech-audiologist neuroscientist, , in Naperville every Thursday at 10:00 am. After a good session, I attempted to pick up some groceries at Jewel on the way home. I had just shifted the car to park (which lifted the parental lock) and he ran out of the car. I was still in my seat belt! I took off after him as fast as I could, but he ran right into the path of cars driving into the parking lot. A man in a truck slammed to a stop to avoid hitting him. He then ran into the store and I had to have the assistance of patrons to direct him back to our car. Noah loves his clay so I promised if he executed his home program with little incidence of behavior I would take him to Lakeshore Learning Center in Orland Park, to get some. He did well, so we went. As we entered a salesperson greeted us with their monthly special, kinetic sand...something Noah loves, but cannot have because it contains gluten and causes him to have terrible rashes. I explained we were there to get the gluten- free clay when he began to shout that he wanted the sand. I tried to direct him back to the car, saying we would come back in after we calmed down and try again. He dropped to the ground and began kicking in protest overturning several display bins and knocking over towers of products. Employees again, had to usher me to our car. He kicked me in the face on the way home. I sincerely lost count of how many times he tried to elope from the car. It was so hard to write this. Because, now I want to tell you about what a beautiful, funny, sweet boy our darling Noah is. He simply does not yet possess the ability to control himself. He is greatly frustrated that his language is so limited. He is angry that he knows what he wants and cannot express it. As I write this letter, he is spinning and screaming because he fashioned a ceiling fan out of clay and he does not understand why it will not spin. He has chewed his shirt to the elbow. He has a rash we have been unable to heal that comes and goes with little warning. We do our best to remove offending foods, dyes, detergents and soaps, yet they persist. He wakes in the night, bloody sheets stuck to him, after scratching his arms, legs, and feet in his sleep. He screams quite a bit during the day simply because his body does not do what he wants it to do. He will do anything he can to get to the food that makes him sick. Because his diet is so restricted, the food the rest of the family eats resides in large plastic bins in our garage. We have had to put expensive locks on every door to ensure he does not escape our home. I work with him everyday on a simple task like cutting paper...sometimes up to an hour and a half. The next day it is as if his little fingers have no memory of every touching scissors before...and we start over again. My husband runs an international call center for Morning Star Financial. He is gone every morning by 5:00 am and returns very tired, around 7:45, Monday through Friday, when he is not traveling. He does not see the children before school, and spends about a half hour with them before they go to bed. He is very supportive and helpful when he is here on the weekend. Without his help it would be impossible to take Noah to the doctor. He must take time off of work every time we have a blood draw. His job has paid for in-home care, ABA co-pays, and all the medical costs not covered by insurance. We both have struggled so very much with seeking services because we know there are so many single parents in need Along with my colleagues at the Thinking Moms we started a 501-C3 teamtmr.org to help families get the hard to afford care they so desperately need. Yet, we are NOW the family we seek to serve! We tried to do it on our own for 6 years. My husband and I both attempted PUNS over the past two years...but after talking to someone on the phone who explained how hard it really was to win the lottery it was hard to dedicate the time to the paperwork when we both had such tremendous demands on our time. I should add here Noah still does not sleep through the night consistently. While he no longer wakes like he did before we addressed his bowel disease (up to 4 times a night for 6 years), he often wakes at 4:00 am screaming and will run from room to room opening and closing doors, turning the lights on and off and trying to jump the gate we have attached to the upper floor of our home to ensure he does not escape while we sleep. My parents moved in with us in November of 2013, to help. Within a month my asthmatic, 83 year old father contracted pneumonia and is now hard of hearing and medically fragile. My mother was diagnosed with lung cancer shortly after that and is now recovering. However, she still suffers lingering neuropathy from a previous surgery. Mom mom picks our daughter up from choir practice and tries to help with the laundry when she can. She cannot help with Noah as much as she would like because he overpowers her easily. My son Liam participates in no extracurricular activities at all. We asked him why he doesnt want to and he said, If I do, no one will be here to protect mom. He suffers extreme anxiety as the result of what he has witnessed is his young life. We desperately need help. If you would like video evidence please see the following link: https://youtube/watch?v=SwOp7bFVt3s&list=UUy71MN2eZ14jMJR2-KY6Cgg This is one of Noahs therapists (that we can no longer afford) trying to help him drink broth. Deepest Respect, Lisa Joyce Goes
Posted on: Wed, 26 Nov 2014 23:28:57 +0000
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