A Beautiful Article - I Agree Heartily!!

picture from MSN post

A wonderful post today on MSN: "I am not a scientist, but I am a mother — I know why my son has autism". Carrie Cariello goes through the theories behind why children get autism, apparently the latest being circumcision, the bonding, being told what foods to eat, etc. Her 5 year old son summed it up nicely - he was 'bornd-ed with it'. She was also approached by another mom whose daughter is in her son's class and bravo to this young lady - she heard another child tell him that he was weird but she came to his defense saying 'he is exactly the way he is supposed to be'.

That he is. He is what God intended him to be. I cannot go back in time to definitely tell environmental, genetic, food issues -- Will came to us at 2 1/2 years old, we were his 4th home. He was already showing signs of autism. We know a little bit of background: he was a premie (born at 5 1/2 months gestation at 5 pounds 6 ounces), his mom was doing drugs. Was this a cause?? Haven't heard much with the drug issue. His past foster homes were a variety of situations from abusive to no one paying attention to him (stuck in a playpen in front of a TV), to a another foster mom taking time to read to him and learn his alphabet.

I love the fact that Carrie goes through a list of what drives her crazy about autistic characteristics and what endears those features to her. I have my own list:

* From when he wakes up to when he goes to bed, the conversations about food never ends and it always is the same -- he wants either hamburgers or pizza and a salad and ice cream.

* He constantly focuses on vacation - when are we going and where. It use to be we could tell him the facts and it would stop the constant asking. Now it just promps him to continually show us (and anyone else who will listen) a calendar and write where we are headed (or where he thinks we are headed).

* He always talks about his CCD classes and when they are (even though it is on the calendar) as well as when we are going to church.

* Right from the dawn of day, he constantly talks about taking his shower and shaving even though he knows the time of day that usually occurs.

* He is always showing us a DVD he wants to watch. We tell him to put it on (he knows how to work the DVD player and the remotes involved) but he walks away to the computer and will come back when someone else is watching something to try again and again and again and again.

But then come the hugs, at times when you least expect them. Although at times, you know a hug is coming when he wants something (just like any other child). He will put away his clothes, clean off the table, put food away in the refridgerator, you guessed it - when he wants something. But he is who he is, just like any other child or 23 year old young man. He tests my patience every day, he tests my ability to finish what I am doing with his constant interruptions of the same thing. But when he is not here, after I enjoy some peacefullness and quiet, I do look forward to him coming home so the daily barrage of the same topics of conversation can start again - usually I try some other way to get through them like talk to dad, we'll figure that out after supper.

So Carrie, thank you for the wonderful article and insight. We can all relate, we can all add our own twist on this.

A new term for me with Will.

Will came home from his adult day program with a note on his iPad about a 'not-so-good-day' that he had -- apparently he was frustrated a lot and they saw a few incidents of 'Self Injurious Behavior' or 'SIB'. Now knowing Will is not violent or has ever exhibited any issues of what I thought was SIB, like head banging or biting, I got worried. Yes sometimes he balls his hand into a fist and will hit his headphones or chin lightly, or will dance and jump around and slap his thigh, I never realized this was SIB. Granted it was not a behavior I liked or endorsed and we were trying to stop it. So I decided to take a look into it and read about it. I have not found anything yet that specifically targets adults, just children but I guess most of what they write can be used for adults with autism. An ezine article, 'Treating Autism Symptoms in Your Child', by Craig Kendall tells of several reasons why your child might do this. One is that they might be overwhelmed or overstimulated and need to focus on something internal or external and pain does that. Second is that the child might need more tactile feedback. Third, if the child hits ears, it may be a sign of an ear infection. Lastly Craig states that it may be related to a specific type of seizure so contact your physician. He also states that when a child is non-verbal, there is a frustration of not being able to communicate. So besides the obvious of finding a communication method, we should also work on teaching the child ways to lessen the frustration like through diet, relaxation techniques, exercise, or deep pressure. We try to get Will to type out what he feels though this is hard for him to do. Of course, you can keep a record of what is happening that triggers this SIB that will help to stop it before it happens. In Will's case, he does it when he is happy or sad, when he listens to his music or on the computer or just sitting quiet. Of course, seek medical help if you are not sure what to do or talk to your child's teachers or therapists. Another article by Gary Heffner, "Introduction to Self Injurious Behavior" from Autism Help, states: 'It would make sense that the seriousness of the self-injury should direct the choice of treatment. A child's whose life is in danger should receive the most aggressive treatment. The choice of treatment needs to be up to the parent, of course. In some countries or states, there may be laws that limit the type of treatment a child may receive, however. These laws may require treating self-injurious behavior with positive behavioral programs and outlaw the use of aversives, even when the self-injury is life-threatening. Read how one parent described this approach: "Currently, there are 100's of autistic people being tortured by ineffective, tedious and ridiculous "positive behavioral programs" - Worse, even when these autistic people have repeatedly failed to respond to these conventional methods, several state laws have prohibited the use of mild aversive therapy, which - ironically is one of the most safe, effective and humane therapies used to protect a compulsive self-injurious autistic person-who has otherwise NOT responded to a plethora of conventional interventions. It's a crime to allow a person to continue injuring themselves...and the worst is the on-going practice of behavioral psychologists taking data - yes data - counting the number of times the autistic person smashes their skull with their fists, or rips their hair out... it's called a "functional analysis" - and this practice should be illegal. I never want any family or child to suffer the unbelievable hell we experienced dealing with uncontrollable self-injurious behavior. Families should know what the alternatives are to help their child. Skin-stimulus therapy is very effective in that small population of self-injurious children, who have otherwise NOT responded to other therapies. Many people do not realize that it's extremely complex to treat a profoundly-autistic or profoundly-disabled person's self-injurious behaviors - as they have limited cognitive abilities; hence don't respond favorably to ignoring, re-direction or pharmaceutical interventions. The skin-shock works best for compulsive self-abuse, as it acts like a nudge on a record player that keeps playing. It's like it "startles' the otherwise very distant autistic child into reality. It actually teaches them self-control. Some of these types of autistic children are on a very primitive level - and it's hard for others to accept that they simply don't respond to conventional therapies." (An anonymous parent). Try the non-aversive procedures first, but for those children whose seriously self-injurious behavior has not responded to these procedures, it may pay to look at aversive strategies as well.'

Unique therapy animals to help.

(picture from MSN) Today on MSN there was a story about a variety of animals being used for therapy. 'Ok so?' you say. Yes, I have another post regarding this earlier on, under "Feel Good Stories" and "Dolphin Therapy". Your point?? Well, I came across a few other animals helping folks and thought I might share the information. Of course there is the loyal dog, coming in all shapes and sizes, man's best friend, ready to help at the call. How about a

miniature horse helping those who are blind or have cerebral palsy since they live longer than dogs? Elephants are being cared for by autistic children in Thailand improving social skills, daily activities, posture and balance. Capuchin monkeys help quadriplegics because of their dexterous hands and they live a long life. You can see from the top picture, parrots can work with people who are bipolar. In this case, the gentleman would try to calm himself when he felt an episode coming on by telling himself 'calm down'. The parrot learned to mimic him and also say 'calm down' which he found soothing. The soft tactle sensation of petting a duck can help those with dementia. Know people who feel lonely and isolated in a hospital? Have a llama visit them. Having a cat nearby if you suffer from temporal lobe seizures may help you identify one before it happens. Twinkie the pet therapy pig in Florida helps a boy with Down Syndrome.

Iguanas can help mood disorders. Social anxiety disorders can be helped by pigmy goats. Kids having difficulty reading seem to relax more when reading to rabbits. One woman has found her pet rat sitting on her shoulder can warn her when back spasms will start. We all know our pets love us unconditionally. They help in many ways - even sitting with us on the sofa at night after a long day makes us smile, allowing us to pet them slows our bodies and minds down. They can sometimes can act faster than medicine.

Chiropractic Help for Autism.

(picture from newsletter from my chiropractor) I have mentioned in the past that our family has gone to a chiropractor for years. We took our boys when they were young. When Will came to live with us (at 2 1/2 years old), he had little strength on his right side - using his arm very little and walked favoring his left side. It was our understanding that he did not learn how to walk until about the age of 1 year. 2 out of 3 foster homes had him staying either in a highchair or in a playpen whenever the social worker saw him. Anyway - I took him one day asking Dr. Gibson if he could help, which of course he said 'yes'. If my memory serves (depends on the day and how much coffee I have consumed): after examining Will and running some type of test which measured the electrical impluses off his spine, he started doing various adjustments on his back and neck. We took him about once a week and after close to 2 months, there was a change. There was more strenght, he would use his right side more, walking was more balanced. To this day, we continue to go: all 5 of us, my mom use to go and my father-in-law, 92 years old, goes. Which brings me to the article in the newsletter I received. It was from the September issue of the Annals of Vertebral Subluxation Research (I tried to get on their site but could not - think you need to subscribe and what I could read -- well, I am not a medical person and I could only read so much). It was called "Chiropractic Helps Child with Autism, Acid Reflux, Headache, Seizures, and Vomiting" and it follows a 35 month old girl on the autism spectrum. As it states her symptoms included 'headaches, epilepsy, behavioral and developmental delay, acid reflux, sleep disturbances, and vomiting'. Her history: 'she was born prematurely at 28 weeks, weighing 2 pounds, 5 ounces. Also, she was in the NICU for six weeks and came home on oxygen with apnea sleep monitors. Her primary symptom was headaches which, according to the girl's father, caused her to rub her head often as if in pain. Seven months prior to the chiropractic visit, the girl had been diagnosed with autism with the associated problems of this condition. Two months before the chiropractic care, the girl had also suffered a seizure'. So the chiropractor started her treatments and according to the authors of the article, after 10 days there was a decrease in headaches, her posture improved, behavior mellowed, and she was eating better. 24 days into treatment, she was maintaining better eye contact and not vomiting as much. 240 days after the start, she was more verbal and most of her original symptoms were disappearing. Finally the authors state that the girl's mother said her daughter was, "...off all of her medications, she’s making improvements with her occupational therapists, speech therapists, even her pre-school teachers are noticing a big difference. I'm getting my little girl back – look, she’s making eye contact with me, and even starting to say a few words! She'll use her hands to do the motions to the Itsy Bitsy Spider song!" I can't state that going to a chiroprator will solve all your problems, but I have seen first hand how it helped Will physically. Maybe it has helped him to come out of his shell too but we have always kept him with us, in public, making sure he reaches out to others. I do think it is worth talking to one!!! Here is a link to our chiropractor's office with a variety of articles relating to autism and chiropractic care.

Home Care Help for Those with Autism.

(picture from Best Home Care site). Normally home health care is thought about in the sense of taking care of elderly parents or someone just home from the hospital. Best Home Care offers the idea of help from a Personal Care Assistant (PCA) for help with someone with autism. Autism demonstrates itself in a variety of ways - 'a lack of empathy, problems with eye contact and communication, a delayed ability to speak, echolalia, a strong desire for routine and an obsession with a particular subject. Autistic people may also engage in “stimming,” or self-stimulating, repetitive behaviors such as hand-flapping or rocking'. As with care for other folks, a PCA will help with daily living routines making sure they take their meds, eat, bath, etc. They also are trained in dealing with tantrums and other behavioral issues. While helping the individual autistic person with his or her needs, it may be possible for the PCA to help with meals, chores or taking the person out into the community. Two great points brought to light: 'Since autistic individuals often seek out predictability and routine, being able to stay in his or her home environment may be more beneficial than moving to a new setting, such as group home. In-home care also helps the autistic person’s family, by providing more stability and helping family members avoid excessive stress or burn-out.' See post here. See information on PCAs here.

Induced Labor & Autism Linked.

This is from an online newsletter from my chiropractor, Dr. Gibson. Our family has been going to him (starting with his predecessor) for a long time. We started taking the kids when they were small, my in-laws go, my mom went. I saw this article and thought it might be something to share.

Medpage Today on August 12, 2013 published an article from the results of a study from JAMA Pediatrics showing this link. Charles Bankhead of Medway says "The odds of autism increased significantly in children whose mothers gave birth with induced or augmented labor, a study of more than 600,000 births showed." The study was done over an 8 year period and looked at 625,000 babies. They were then matched with their school records and autism diagnosis. Time Magazine's online Family & Health section, August 13, 2013 states "For children who were born after induced labor, the risk of autism was 13% higher compared with that of children born to mothers who were not induced; speeding up labor was associated with a 16% higher risk of autism, while both induction and augmentation were linked to a 23% greater risk of autism in children." In the study results, the authors report "Compared with children born to mothers who received neither labor induction nor augmentation, children born to mothers who were induced and augmented, induced only, or augmented only experienced increased odds of autism after controlling for potential confounders related to socioeconomic status, maternal health, pregnancy-related events and conditions, and birth year." They concluded, "Our work suggests that induction/augmentation during childbirth is associated with increased odds of autism diagnosis in childhood." This is something you may want to check for yourself. Medpage Today Time Magazine online Easton Chiropratic Picture from Easton Pond Chiropractic site.

Apps for Children.

During a seminar for iPads, 'Moms with Apps' was mentioned as a great place to get information. It apparently was started by 4 moms developing family-friendly apps. The site describes its concern for privacy and how apps are handled. The site also gives advice on how to review an app and how to manage an iPad. 'Moms with Apps' also has 'App Friday' promoting highlighted educational apps which are either free or heavily discounted. I chose a few to see if they were available on the iTunes store - some were and some were not, these I found by Googling the name and they were offered through other resources. I found, through their 'Jellybean Tunes App Report' books and games. They offer a separate category for 'Apps for Special Needs', some with demos to view, designed to help with speech/articulation, fine motor skills, reinforcement of behavior, imaginative play, etc. There are apps for children who are verbal and non-verbal. We are using 'Assistive Chat' for Will, which we downloaded from iTunes - he types out words and/or sentences and it has a verbal output for him so we hear what he typed. There are others using 'Prologuo2Go', also available on iTunes, which offers pictures to match up to words to communicate. Since we are talking about the iPad for the disabled, the site shares 40 iPad apps for the learning disabled, with a page for reviews for autism apps. They offer 10 tips for downloading family friendly apps: 1 - have a goal; 2 - try some free apps; 3 - if it is free, know why it is free; 3 - know your options under settings > general > restrictions; 4 - decode the iTunes app description & preview the app before 'hand off'; 5 - don't be shy: if you have questions contact the developer; 6 - learn how to 'party' with App Friday; 7 - read the news on the App Report; 8 - befriend the bundle (of apps); 9 - watch the stars (on their Banner Program); 10 - leave a review in iTunes for others to see. While it seems that the majority of apps are for young children, you can go to the "Appy Mall" for more advanced programs that include high school and college. Moms for Apps also encourages those developers of apps to work with them, offering a forums for developers and groups. They even offer advice for the best way to work with schools on their 'Collaborating with Schools' page: make educational content the most interesting part of your app; include multiuser functionality; provide progress reports through apps; give away accessories; educate your schools about events such as App Friday; provide materials to help integrate apps in the classroom; attend technology meetings at school; connect with the school's PTO/PTA. Definitely check out the Moms with App site for updated information and reviews.

Transition Stories.

As I continue to do the paperwork and contact the appropriate agencies for help, I am also looking at agencies that help find work. There are several. There are companies that hire people with disabilities; my list is for those looking for something else. I also think of an agency that interviews the person, their family and friends to see what he/she might be interested in doing on their own. I like that idea. This started me thinking, my husband would say 'look out' or 'I could smell that smoke', about possible types of jobs that could be considered a business that they could do, work from home or a family business. I understand they cannot make a lot of money due to SSI regulations so it would be part-time/on a small scale. These can also be done using a mentor. There are agencies that have folks who want to mentor a challenged child/adult or use a Best Buddies person. Here are some possibilities - just ideas I toss around in my head especially after I leave a place or talk to someone who owns a business: *bake cookies or cakes to sell to friends or family (this one came up during a seminar - someone's son was doing it and loved it); *walk a dog/take care of a pet for neighbors or family; *work with a local small business -- we go to a local car repair business, I think a small 'stand' could be set up selling coffee and snacks, on a Saturday for instance. After visiting mom at the nursing home and hospital, how about working with a local gift shop setting up a place on the weekends selling some items or take some items from the hospital gift shop around to some floors and help sell. The young businessman or woman keeps a percentage of what they sell. At nursing homes, they can sell on weekends or family nights; *collect scrap metal, cans and/or bottles and sell them. They would be helping the environment as well; *if they are artistic do some art work and place it in local businesses; **this one I had started trying to work out a plan to do for Will and maybe a few others in his group (or for his work group in school) but due to family illnesses and my work gearing up I did not get far. I still think it is viable. The idea came from my mother actually -- she was commenting on how she has a hard time getting to the cemetery to put flowers on family graves. So what about a business where people can go for them? They advertise in churches, funeral homes; they charge a straight fee to order either fresh or artificial flowers or a flag; who goes can clean the stone a bit and maybe say a prayer. Take a picture to show their client what it looks like. As I doing more preparation, and looking at all the papers and booklets I have accumulated regarding transition, I came across a magazine, called Autism Advocate, given to me by a neighbor. It is dated March 2007. The reading, though some of the statistics are probably not the same, is still pertinent today. There was one particular article called "Moving Into the World of Employment" written by Cathy Pratt, the Director of the Indiana Resource Center for Autism & ASA Board Chair. It basically talks about what employers/service providers really need to know when working with autistic adults. There are 10 points that she makes and expands upon which gives employers insight into how to best work with autistic employees and make the experience a win-win situation, a situation that best lets the employees shine and can help the company environment shine. The following is a short-order version of the article. * Have a through understanding of ASD (autism spectrum disorder), the spectrum & diagnosis is a must. Service providers need to understand the complex nature of ASD and know that there are no generalized services that universally apply. ASD is a neurological disorder, not emotional or a mental illness. * People with ASD require a creative and careful assessment process. Many ASD people have unique skills not obvious during the transition process. Personal skills are shown through careful observation, interviews with those who know the person, and a longitudinal assessment process. * Think outside the box. Services and vocational programs are usually offered in terms of what is available, instead of what the person needs or is interested in doing. Also it should not be assumed that the person with ASD who has communication and socialization issues, has the same type of challenges in other areas. Assume the opposite, most other areas are better developed. * Be aware of sensory processing challenges. Dealing with sight and sound can be different than that of their co-workers. Accommodations should be made so coping skills can develop. There should be opportunities to leave a stressful environment from time-to-time, without consequence. * Build on strength. Address a person's strengths and interests rather than focusing on what the person cannot do. * Prepare, Prepare, Prepare. Make sure the person understands what will happen -- during the assessment, at the work-site, and during work-training. Best sometimes to use visual supports. * Communication should not be all talk: fewer words used often. Some ASD people use many words but in actuality, have a limited receptive language. Best to use more written and concrete communication and directions, like developing schedules and visual sequences of tasks and information about the 'rules' of work. Also sarcasm, innuendos, and double meanings are lost so directions can be confusing or meaningless if these are used. * Carefully consider the environment & predictability of the job. The worst is the workshop-type

setting: too many people, loud and no where to go. As well, seasonal, ever-changing jobs increase anxiety. Best to be put in a setting of predictability and stability; it creates an efficient and successful employee. *Social expectations require instruction. Prepare the person for the rules of the job, teach expectation, rehearse how to greet people, ask for help, engage in small tasks, and accept or give complements. * Systems must work together (delays can be deadly). Local agencies must work with schools to identify students early, work with the school team to get to know the student. Then they must identify adult services and potential employments. As Cathy sums it up: "As your son or daughter moves from the public school system, which has clear legislative entitlements, to the adult world of eligibility, it is important to have a vision for your child. Examine the possibilities." In order to access the entire article, you may need to register as a member of the Autism Society. It is FREE and offers a lot of valuable information. You can find the whole article here.