Autism

Vacation Cruise to Europe

Dream Vacation, New Book, and Good News for Autism Community

It has been over a month since I posted my last blog. I have been very busy with good things. One of them is I took my very first cruise. I never thought I would ever do it (Images of the movie The Poseidon Adventure, which I saw as a child, prevented me from ever considering a cruise), but a family wedding and the chance to see Europe overrode my fears of water. I am so glad because I will always look back on this trip as a truly wonderful experience. The past year and a half have been stressful for me and my family because my father-in-law was very sick. Unfortunately, he passed away in May. But this vacation cruise convinced me that this world is filled with so many wonders and experiences that a person should never give up hope that things can always turn around.

We traveled to Barcelona and Mallorca, Spain; Marseilles, France; and Florence, Rome, and the Amalfi Coast in Italy. It was a trip of a lifetime!

The staff on the cruise were so accommodating and eager to help make the vacation as enjoyable as possible. I felt, “Yes! We deserve to be pampered after all our years of hard work and struggles. Why not enjoy it.”

Another reason to celebrate is my second novel is in the proofreading stage. Like True Mercy, my latest literary effort took about four years to write and edit. Now I have to find a cover designer and decide how to distribute the novel. Unlike the first, my second novel is women’s fiction and the main theme is self-acceptance.

Months ago, I posted a rough draft of my second novel on Wattpad, an online community for writers and readers, and when I returned from my trip, I was pleasantly surprised to find more followers.

Surely, life can turn around!

I am also happy to report that hard-working special-needs advocates are beginning to see progress in their ongoing battle to support the autism community.  Whether you like President Trump or not, you have to give him credit for extending the Autism CARES (Collaboration, Accountability, Research, Education, and Support) Act for five more years. The President reserved $1.8 billion dollars for this extension. In addition, the Autism  CARES Act will require the Department of Health and Human Services to compile a report for Congress about the health and welfare of individuals in the autism community.     

And that’s not all. Insurance companies in all fifty states are now required to cover on some level the treatment of autism that is deemed medically necessary, including ABA (applied behavior analysis).

I will most likely be only able to blog once a month from now on, but I am determined to write news of interest to my readers on a variety of topics, including the latest on autism, human trafficking prevention, inspirational stories, and book reviews.

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Woods, Residential Housing, and Options for the Disabled

The recent trend is to stop so-called “institutionalizing” individuals with special needs. Policymakers and journalists have latched onto the thinking that all special needs individuals should integrate into the community. That is, they should live in private homes for the handicapped and get busing to work/activities in another location with cooperating medical facilities nearby for their care.

Well, I am writing to tell the public that this thinking does not work for all people, particularly those with severe special needs. They need and should be entitled to options.

I will use the residential housing community Woods Services in Langhorne, Pennsylvania as an example. The Philadelphia Inquirer plans to run a series of articles on alleged abuse and neglect at Woods. While it is true that they and other residential housing facilities suffer from a shortage of people willing to work with individuals with extreme disabilities, Woods Services does its utmost to provide housing and round-the-clock staffing for each client. They provide medical and dental services on campus, including a shift of nurses for all their housing units. If, God forbid, there is a life-or-death emergency, a client can receive immediate medical care, which helps prevent a condition worsening or even death.

For the school-age population, Woods has a state licensed private school on campus that operates the whole year, providing special education and supports like occupational therapy, physical therapy, and speech therapy. For non –verbal clients, alternative communication devices like sign language and voice output devices are also available.

For those over 21, Woods buses clients to work sites on campus or out in the community, whichever is appropriate for each client. Some of the on-campus work sites include a coffee shop, a floral shop, and factory jobs. All positions include a job coach.

All clients have on-campus psychological and psychiatric services.

In addition, Woods provides trips like going to the movies, the mall, and Philadelphia sports games all through the year.

And no one is in danger of aging out. People can live in this staff- and medical-supported residency throughout their lifespan.

Politicians are supposed to serve and represent the interests and needs of their constituents. Journalists are supposed to report the news. Neither are experts in special needs care. They should not decide or persuade the public that all individuals with severe disabilities are suited for a one-size-fits-all system. There is no system that is right for all individuals—obviously, everyone has different needs and cannot thrive with only one option.

One change I personally would like to see in all group homes for special needs clients, and for nursing homes as well, is more funding to increase the staffs’ salaries in the hope of motivating more people to work in these residential housing facilities. It takes a special person to work with people who cannot take care of themselves through no fault of their own. They are the unsung heroes.

Woods is unique in having a vigilant staff. A few years ago, a client reportedly had a temper tantrum and hid under a bus. The staff spotted the client and made sure he was safe before the bus moved again.

Most people cannot relate to the challenges of having a loved one with severe special needs. But anyone could have a child, a sibling, or any other relative who is born with a neurological disorder and that person may require care at all times with no hope of ever living independently. Family members need the peace of mind that goes along with knowing their loved one is getting the care and services they require round-the-clock. These families need places like Woods.

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April is Autism Awareness Month

The increasing rate of autism should be everyone’s concern, not just those who have a family member with the diagnosis. At the present rate, 1 in every 59 children is diagnosed with autism. There is a spectrum according to the severity: those on the high end of the spectrum are able to function independently while those on the lower end require constant care and supervision. Any child could receive the diagnosis regardless of socioeconomic class, color, or religion. Anyone who feels it is not “their problem” may one day be in for a big surprise—if that person does not have a child with autism, then a sibling’s child, a niece or nephew’s child, or a grandchild could have this developmental disorder. Therefore, autism should be everyone’s concern.

National Autism Awareness month concept with puzzle or jigsaw pattern on heart with autistic child’s hands supported by nursing family caregiver

The following is a list of questions people may have. I will try to answer them as clearly and succinctly as possible.

Q. What is autism?                                                                                                      According to the website Autism Speaks (https://www.autismspeaks.org/what-autism), “Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and nonverbal communication.” As every individual is unique, autism affects each person differently.

Q. What are some telltale signs of autism?                                                                                                                      Signs include

  • Repetitive behaviors like hand flapping, rocking, jumping
  • Inability to make eye contact
  • Speech difficulties
  • Repetition of words (echolalia)
  • Inability to participate in social interaction
  • Sensitivity to sounds, smells, and tastes
  • Trouble understanding the feelings of others
  • Agitation with schedule changes
  • Unusual mood patterns, sleep difficulties
  • Hyperactivity
  • Fixation on particular topics
  • Limited attention span

In my novel True Mercy, one of the main characters is an eighteen-year-old man with autism named Adam. I include many characteristics of autism in my portrayal of Adam like hand lapping, rocking, echolalia, sensitivity to smells, unusual mood patterns, and fixations on certain topics.

Q. When do signs of autism appear in children?

According to Autism Speaks, signs of autism may occur from the first few months of life to as late as 2 or 3 years old.

HelpGuide (https://www.helpguide.org/articles/autism-learning-disabilities/does-my-child-have-autism.htm/ ) has compiled a list of early signs of autism:

The baby or toddler doesn’t:

  • Make eye contact, such as looking at you when being fed or smiling when being smiled at
  • Respond to his or her name, or to the sound of a familiar voice
  • Follow objects visually or follow your gesture when you point things out
  • Point or wave goodbye, or use other gestures to communicate
  • Make noises to get your attention
  • Initiate or respond to cuddling or reach out to be picked up
  • Imitate your movements and facial expressions
  • Play with other people or share interest and enjoyment
  • Notice or care if you hurt yourself or experience discomfort

Q. What can parents do if they notice these signs?

If a parent notices their child has developmental delays, it is vital they seek the advice of their child’s pediatrician to find out if testing is needed. The earlier the diagnosis, the sooner the child can receive early intervention, which is critical for the child to make gains in their development. Applied Behavior Analysis (ABA) is the therapy that has proven to help children with autism make significant improvements.

Q. What are some resources to get help?

I gathered some resources but this list is by no means exhaustive.

Autism Bedforshire http://www.autismbedfordshire.net

Autism Speaks http://www.autismspeaks.org

Autism Society http://www.autism-society.org

Autism Web http://www.autismweb.com

Autism Hwy http://www.autismhwy.com

HelpGuide  https://www.helpguide.org/home-pages/autism.htm

Addendum:

I had intended to conclude my blog post at his point, but when Amy Tobik of Autism Parenting Magazine (https://www.autismparentingmagazine.com/supportive-states-raising-autism-child/?utm_source=Autism+Parenting+Magazine+Contributors&utm_campaign=71fe1ce660-EMAIL_CAMPAIGN_2018_06_18_01_56_COPY_01&utm_medium=email&utm_term=0_782e0cc91d-71fe1ce660-96778409 ) sent me this article by Krystal Rogers-Nelson, I couldn’t resist including it. She provided a list in the order of the most supportive states for raising a child with autism.

The three main factors considered for these rankings include:

  1. State laws requiring insurance coverage of ABA therapy (points were weighted based on age limit, coverage limit, and types of insurers required to provide services)
  2. If a state is part of the ADDM Network (Autism and Developmental Disabilities Monitoring Network, which estimates the number of children living with autism and other developmental disabilities in various places in the United States).
  3. Grants available to individuals and families in the specified state
Rank State Age Limit? Coverage Limit? ABA Therapy Requirement for ALL Insurers in State ADDM Network Grants Available
1 California No No** Yes No Yes*
2 Massachusetts No No Yes No Yes*
3 Indiana No No Yes No Yes
4 Colorado No No Yes Yes No
5 Vermont 21 No** Yes No Yes*
6 Maryland 19 No Yes Yes Yes*
7 New Jersey 21 No No Yes Yes*
8 Washington No No Yes No No
9 New Hampshire 21 Varies based on age No No Yes*
10 New York No $45K Yes No Yes*
11 Oregon No*** No No No No
12 Connecticut 15 No No No Yes*
13 Maine 21 $36K Yes No Yes*
14 Pennsylvania 21 $36K Yes No Yes*
15 Mississippi 8 No Yes No No
16 North Dakota 21 No No No No
17 Ohio 21 No No No No
18 DC No limited to cost of similar therapy No No Yes
19 Wisconsin 9 $50K No Yes Yes*
20 Delaware 21 $36K Yes No Yes
21 Arkansas 18 $50K Yes Yes No
22 Minnesota 18 No No No No
23 Nebraska 20 No No No No
24 Utah 10 No No No No
25 Wyoming 20 No No No No
26 Illinois 21 $44,877 Yes No No
27 Florida No $36K, $200K lifetime Yes No No
28 Georgia 6 $30K No Yes Yes
29 Rhode Island 15 $32K No No Yes*
30 South Carolina 16 $50K Yes No No
31 Virginia 10 $35K No No Yes*
32 Kentucky 21 $50K No No No
33 Kansas 12 limits based on hours Yes No No
34 Michigan 18 varies based on age Yes No No
35 Oklahoma 9 $25K Yes No No
36 South Dakota 18 varies based on age Yes No No
37 Texas 9 varies based on insurance plan Yes No No
38 Alaska 21 varies based on insurance plan No No No
39 Iowa 21 $36K No No No
40 Louisiana 21 $36K No No No
41 Arizona 16 varies based on age No Yes No
42 Missouri 18 $40K No Yes No
43 Nevada 18 $72K No No No
44 North Carolina 18 $40K No Yes No
45 Tennessee 12 varies based on insurance plan No Yes No
46 Alabama 9 $36K No No No
47 Hawaii 13 $25K No No No
48 Montana 18 varies based on age No No No
49 West Virginia 18 $30K No No No
50 New Mexico 19 $36K, $200K lifetime No No No
51 Idaho n/a n/a No Law Requirement No No

Multiple grants available for this state.
**Can’t exceed the cost of treatment allowed under the Affordable Care Act (ACA).
***Must start treatment before age 9.

Idelle Kursman is the author of True Mercy, a thriller designed to bring awareness to two issues: families coping with a loved one with autism and the human trafficking crisis. True Mercy is for sale on Amazon, Barnes & Noble, IngramSpark, and Smashwords.

Need help with blog content? Please contact me through my website, www.idellekursman.com.

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When Children with Autism Become Adults

 

                                                                               Photo by Nathan Anderson

The Autism Population is increasing and the children are becoming adults. They need work and programs.

In my novel True Mercy, one of the main characters is Adam Hitchens, a young man with autism who does simple, repetitive clerical tasks at a local business. He has a place to go every day and is proud to hold a job. I recently read the article “500,000 Teens with ASD are Headed to Adulthood. Where will They Work?” By Suzanne Garofalo. It appeared in the Houston Chronicle and was reprinted in the disabilityscoop (https://www.disabilityscoop.com/2018/11/16/500000-teens-asd-work/25736/. The article contains many examples of young adults on the autism spectrum who have been able to find satisfying employment and now feel productive and have a sense of purpose. Many employers are realizing it is well worth their while to train and keep these employees, finding many of them to be dedicated and hardworking. Garofalo writes that “Research shows job activities that encourage independence to reduce symptoms and increase daily living skills.” Some businesses even qualify for a tax write-off for participating in programs to employ these individuals. While this is certainly encouraging and a reason to celebrate, Garofalo also points out that “nearly half of 25-year-olds with the disorder have never held a paying job, according to Autism Speaks.” All people by nature need a schedule, a program with activities, or work in order to thrive. Parents are finding that as their special needs children get older, it becomes harder to find programs and resources. Many programs have waiting lists.

It is my hope that more opportunities for this population increase throughout the country. With the rate of autism now 1 in every 59 births in the United States, “It is a population that’s exploding but finds few opportunities.”

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Austin, Minnesota: An Autism-Friendly Town

 

The Famous Hormel Historic Home

In my novel True Mercy, Bruce often had to worry about his son Adam’s behavior in social settings. But if the story took place in Austin, Minnesota, he would have had much less to worry about. That’s because Austin is an autism-friendly town. Ten years ago, the community used their resources to educate local business owners about autism and train them to be aware of these customers’ needs. The town even has a community autism resource specialist. Therefore, Austin’s residents are probably more aware than most about the signs of autism that my story’s character Adam displayed: intense fixation on specific topics, unusual body movements like hands flapping, echolalia (word repetition), and meltdowns caused by feeling overwhelmed.

So how did the small town of Austin make itself autism-friendly? Just go in the Hormel Historic Home, a nonprofit museum dedicated to all things Spam, the canned meat that has been produced by Hormel Foods there for 81 years. Mary Barinka works there. She once worked as a Hormel marketing executive and is now the town’s autism resource specialist as well as a museum employee. Barinka has a sixteen-year-old daughter with autism. Along with working at the museum, she handles questions and requests from parents that can range from how to give a presentation to new business owners and their employees on becoming autism-friendly, where to find a good speech therapist, and how to help a local community college launch a special autism program.

You may wonder what business owners must do to make their establishments autism-friendly. Often individuals with autism react negatively to overstimulation, so these changes can include dimming the store’s lights, lowering the music volume, and training employees to speak slowly and in short phrases, and to be prepared to have more patience than usual.

The program began when retired Hormel executive and family friend Gary Ray asked Barinka if her then six-year-old daughter was able to participate in summer camp. Barinka told him she and her husband would like her to attend camp but it was not possible because they would need the camp to understand their daughter’s special needs and they would have to hire a helper. Ray and his wife then offered a donation for Barinka to start a camp. She jumped on it. The Ray’s have since donated over $100,000 to fund more programs such as a monthly respite night with children’s activities to give parents and caregivers a break, a peer program at the high school where student volunteers to spend time with another high schooler with autism one-on-one, day camps, and of course, the museum.

Hearing about the town’s programs, new families have moved in. Barinka also gets calls for advice from other towns who would like to set up their own autism-friendly programs.

Perhaps someday I will be able to visit Austin, Minnesota. I am sure my fictional character Adam and real-life individuals with autism would thrive in this town.

Information for this post came from The Washington Post article “The town that gave the world Spam is proud to be ‘autism-friendly’ by Amy Ellis Nutt.

True Mercy can be purchased on Amazon, IngramSpark, and Smashwords.

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