“Putting the puzzle together one piece at a time.”Joseph Turner
is an 11 year old boy who has spent the past 9 years battling autism
. Along with autism Joseph also has a heart condition; he had open heart surgery at 3 months old, his leaking valve is still present and will need another surgery in the near future when his heart becomes weak again.Other health issues that Joseph has include: hypoglycemia, food allergies ( Joseph is on a special restricted diet that is very expensive but crucial, if he eats a food that he is allergic to he screams for days in gut-wrenching stomach pain.), asthma (he has had lung surgery), many gastrointestinal/digestive disorders , persistent viral infections and ear infections, feeding disorder (for a long time he suffered with anorexia and would gag on everything he ate), PANDAS, severe anxiety disorder, Tourettes Syndrome, OCD, sensory integration dysfunction, sleeping disorders, and immune disorders.
Joseph spends every day in physical pain due to the extent of his health problems, but he still goes to school and tries very hard to learn even when his body is weak from constant pain and he is exhausted. Joseph was diagnosed with autism when he was 2 years old, the doctor told his mother that her son would never love or show affection, play sports, go to college, or get married. The doctor said that Tara (Joseph’s Mother) needed to give up on all the hopes and dreams parents have for “normal” children and that the best possible thing she could do was plan to place him in an institution.
As you can imagine, these words were devastating, at that point in time there was little information out there about autism so Josephs mom left that doctors appointment very confused, scared, and devastated. Although she wasn’t sure how, Tara knew she could never put her son away in an institution and she was not able to just accept that there was no cure or hope for her sons future. From that moment on Tara began researching, reading every book she could and educating herself on autism. She quickly learned that autism was treatable and was not the hopeless condition Joseph’s former doctor had made it out to be. From that moment on, Tara has dedicated her life and has not stopped fighting for her son and his recovery.What You Should Know About Autism Children with Autism may:
Have No Eye Contact.
Have Verbal and Auditory Limitations.
Not Respond To Their Name, or Your Questions.
Seem Deaf or Defiant.
Be Unable To Understand Social Cues.
Have Extreme Sensitivity to Light, Sound, And/or Touch.
Wear Clothing Inside-out To Avoid Tags or Seams against Skin.
Demonstrate Low To No Sensitivity To Pain, or Oversensitivity To Pain.
Have No Fear of Real Danger Or Have Odd Fears.
Take Figurative Language Literally.
“Stim” Or Self-stimulate (Rock Back & Forth, Flap Hands, Flick Fingers, Hyper Laugh, Hum, Etc).
Be Attracted To Water, Traffic, or Have Extreme Obsessions With Certain Ideas, Objects, Places, or People.
Run or Bolt From Stressful Situations.
Enter another Person’s Home without Understanding Consequences.
Be Impulsive or Aggressive When Scared.
Communicate Through a Picture System or Need a Written or Picture Schedule.
Not Be Potty-trained.
Head-bang, Self-bite, Self-hit.
Not Have Toys in His/her Room, or in the
House (May Be More Interested in Lining
Up or Spinning Random Objects.)
Have Extremely Narrow Food Preferences; develop eating disorders, or Ingest Non-food Substances (Pica.)
Be Inflexible To Change.
Have Echolalia: Repeat Something Over & Over.
Walk on Toes.Autism Facts & Stats
Autism now affects 1 in 50 children
Boys are four times more likely to have autism than girls
About 40% of children with autism do not speak. About 25%–30% of children with autism have some words at 12 to 18 months of age and then lose them. Others might speak, but not until later in childhood.
Autism greatly varies from person to person (no two people with autism are alike)
The rate of autism has steadily grown over the last twenty years.
Co morbid conditions often associated with autism include Fragile X, allergies, asthma, epilepsy, bowel disease, gastrointestinal/digestive disorders, persistent viral infections, PANDAS, feeding disorders, anxiety disorder, bipolar disorder, ADHD, Tourettes Syndrome, OCD, sensory integration dysfunction, sleeping disorders, immune disorders, autoimmune disorders, and neuroinflammation.
Autism is the fastest growing developmental disorder, yet most underfunded.
Insurance does NOT cover Autism.
A 2010 Danish Study found that the mortality risk among those with autism was nearly twice that of the general population
Children with autism can and do progress – early intervention is key.
Autism is treatable, there is Hope.“Hopes, Dreams and Fears”
Over the past 8 years, the Turner’s have had many ups and downs struggling to find the right medical treatment and therapy methods that worked for Joseph. They have tried a lot of treatments that failed or showed little to no improvement. Finally in 2007, Tara met Jane; Jane is the founder of a private ABA Educational Facility school here in North Carolina that specializes in teaching children with autism, like Joseph and other special needs as well. Until Joseph began attending school here he was nonverbal, was not toilet trained, and did not have the motor skills to even hold utensils such as a fork or spoon to eat his meals. Jane and her staff are truly committed to teaching these children the basic tasks of everyday living along with the knowledge to read , write, speak and function in today’s society. Joseph can now speak full sentences, sit down at a restaurant with his parents and older brother, tell you when he is hungry, make choices for his self, and even plays with other children. He is now in cub scouts, is able to understand and listen better, and was actually invited and to his first birthday party this year! Words cannot describe the amount of progress that the Turner’s have seen Joseph make in the past few years since attending Jane’s program in combination with finding supportive medical doctors and his gluten free diet. The best part is that Joseph actually loves school and is excited about learning and spending time with his teachers and friends. Tara and her husband also know that Joseph is safe at his school, accepted and loved by his teachers and peers, and is getting the best education he could possibly have.
Joseph is improving with leaps and bounds, but he still needs intensive amounts of therapy and treatment to get him to where he needs to be. Now that the Turner’s have found the right therapy that has already worked many miracles in Joseph’s life, it really is almost too good to be true. Unfortunately, insurance does not cover anything that pertains to autism. The cost of Joseph’s education is 23 dollars an hour for 30 hours a week and the Turners pay this out of pocket. Both parents work very hard to support their children and to pay for the extent of Joseph’s needs including therapy and the many other special things required to help Joseph recover and feel better including his medical bills and the items needed for his special dietary needs.
Needless to say, The Turners are struggling; they are on the verge of losing everything and worry how they will be able to provide for the extent of Joseph’s needs so he can get well. As with any parent, if you see your child suffering and you finally find a way to make it better it is second nature to exhaust all efforts to continue what is working. Tara’s constant worry and biggest fear is what will happen to Joseph if something were to ever happen to her and her husband. Like the first doctor that diagnosed Joe’s autism, most people will tell you that an institution is the best thing you can do. The thought of your child with special needs ending up in an institution one day brings about as much peace of mind as a parent who knows their child is going to prison. Tara is not bothered by the fact that Joseph has autism, but she does want him to have a safe and happy life. Her hopes and dreams for Joseph are that with enough treatment and support he will one day be well enough to be a member of society and never need to be institutionalized.
Tara has good reason to worry about Joseph’s future and safety; her fears consist of worrying about bodily injury or harm, bullying, and even extend to death. Since children who have autism have a hard time speaking or listening but do not typically display any physical defects, many people interpret their actions as bad behavior. Most children with autism have severe issues with anxiety and something as simple as an outing to Wal-Mart can traumatize them. There are many issues on safety and other reasons why Tara worries for Joseph, here are some facts and statistics to consider: Overall Mortality
In 2010, Danish researchers found that the mortality risk among the autism population is twice as high as the general population
In 2009, a California research team found elevated deaths in autism and attributed it to several causes, including seizures and accidents such as suffocation and drowningWandering/elopement
Roughly half, or 48%, of children with an ASD attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings
In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.
More than one third of ASD children who wander/elope are never or rarely able to communicate their name, address, or phone number
Two in three parents of elopers reported their missing children had a “close call” with a traffic injury (Joseph has actually jumped out of the car; Tara managed to reach him just before he made it to the highway).
32% of parents reported a “close call” with a possible drowning
62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
40% of parents had suffered sleep disruption due to fear of elopement
Children with ASD are eight times more likely to elope between the ages of 7 and 12 than their typically-developing siblings
Half of families with elopers report they had never received advice or guidance about elopement from a professionalBullying
65% of parents reported that their children with autism had been victimized by peers in some way within the past year
47% reported that their children had been hit by peers
50% reported them to be scared by their peers
9% were attacked by a gang and hurt in the private parts
12% indicated their child had never been invited to a birthday party
15% were almost always picked last for teams
10% ate alone at lunch every daySexual Abuse
Additionally, the U.S. Department of Justice’s National Crime Victimization Survey, the country’s largest and most reliable crime study, reports that every two minutes a person is sexually victimized in the United States—and the numbers for individuals with disabilities are even higher.
A study done in Nebraska of 55,000 children showed a child with any type of intellectual disability was four times more likely to be sexually abused than a child without disabilities such as autism.Saving Joseph
As you can see from some of the statistics listed above; autism is not only very lonely and difficult disorder for the individual who has it, it can also be dangerous. Tara knows she is very blessed that Joseph is still here, but she cannot help but be concerned for his future. Tara has fought and searched endlessly to save her son, I know this because I am Joseph’s aunt and Tara’s sister. I am writing this in an effort to plead for help for this family and most importantly to rescue Joseph. I look into Joseph’s sweet dark brown eyes and I see a sad little boy who is lost inside this lonely, painful, and confusing world of autism. Joseph is the most incredible person I have ever met, many of his doctors have said that we couldn’t make it one day in his shoes. He is so sweet and loving, it breaks my heart into pieces to watch him suffer the way that he does and know I do not have the finances to help. I have watched people make rude remarks in from of Joseph as if he couldn’t hear them, or even completely ignore his presence in a room. He is a precious little boy who has been treated like he didn’t exist more times than I can count. I have watched Santa Claus at a shopping mall tell my sister not to bring him back until he could behave better just because he put his hands over his ears (stiming) and could not respond to answer questions. I see all the rude stares he gets just because he is different than typical children and I can’t imagine how he must feel. I understand that the economy is not doing very well these days and money is very tight for everyone, but if you do consider giving you are doing a greater deed then you could ever envision. Joseph isn’t asking for much, just a chance to have happiness, be accepted and to live the life he deserves to live. I have no doubt in my mind that if given that chance, Joseph will continue to amaze us with his achievements, conquer autism, and never spend one day in an institution. If Joseph could talk this is what he would want you to know.1. Please know that I am a child.My autism is only one part of which I am, not all of who I am. Are you just one thing, or are you a person with thoughts, feelings, preferences, ideas, talents, and dreams? As an adult, you have control over how you define yourself. If you want to single out one characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. If you think of me as just one thing, you run the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be, why try?2. Please know that my senses are out of sync.This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belligerent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me. My hearing may be hyper acute. Dozens of people jabber at once. The loudspeaker booms today’s special, Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, and they’re mopping up pickles on aisle three with ammonia. I feel like throwing up. And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.3. Distinguish between won’t (I choose not to) and can’t (I am not able to).It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear “*&^%$#@, Jordan. #$%^*&^%$&*.” Instead, come over to me, get my attention, and speak in plain words: “Jordan, put your book in your desk. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.4. I’m a concrete thinker. I interpret language literally.You confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what you mean is, “This will be easy for you to do.” When you say, “It is pouring cats and dogs,” I see pets coming out of a pitcher. Tell me, “It’s raining hard.”Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.5. Listen to all the ways I’m trying to communicate.It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there. Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grown-ups call it echolalia. I may not understand the context or the terminology I’m using. 7. Focus and build on what I can do rather than what I can’t do.Like any person, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need fixing. I avoid trying anything new when I’m sure all I’ll get is criticism, no matter how “constructive” you think you’re being. Look for my strengths and you will find them. There is more than one right way to do most things.8. Help me with social interactions.It may look like I don’t want to play with the other kids on the playground, but it may be that I simply do not know how to start a conversation or join their play. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included.I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language, or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, “Are you okay?”9. Identify what triggers my meltdowns.Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me. My behavior may have a physical cause. Food allergies, sensitivities, sleep problems, gastrointestinal problems, and all of my other health issues can all affect my behavior. Look for signs, because I may not be able to tell you about these things.10. Love me unconditionally.I didn’t choose to have autism, remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think.View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people? I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go