News

An Angel Unaware by parent (Amy O Neal)

As many of you know I am the team captain for the First Step Walk for Children “Team All for Anna”.  I have received several emails wanting to know who was Anna.  I thought I would share a little about Anna for those of you who did not know her and what a difference First Step made in her life.

Anna was a full term baby, she came out screaming and never really quit… Anna did not meet milestones the way my son did so I knew there was something not quite right.  When she was 15 months old we were told that she had Cerebral Palsy or maybe borderline developmentally delayed.  Every time we would take her back to ACH they told us it was a little worse than they thought.  After many tears and a heart that was completely full with emotion we enrolled Anna in the Early Intervention Services with First Step.  This was in 1988 when First Step was one small building.  I sat in the hall for months and cried while the therapist worked with her.  I gradually adjusted and then it was time for preschool.  I am pretty sure that Pam Bland had to “make” me leave her in preschool where she stayed until she was 6 and then went to public school.

When Anna was 4 she was diagnosed with Epilepsy.  At that time she lost her ability to walk due to the severity of her seizures.  At the age of 7 she had 90% of her brain split in half to help control the seizures.  She learned to walk again at the age of 9.  Throughout Anna’s life she had many health problems, falls, stitches and surgeries.  A hysterectomy at the age of 15, a feeding tube due to an aortic blockage in her stomach at the age of 17  and that is when we were told that she did not have Cerebral Palsy.  As you can imagine working with the team at ACH every test you could imagine was performed to determine what was really her diagnosis.  It was determined that she had some sort of degenerative brain disease that was so rare that maybe she was maybe the only one to have it.

First Step gave not only Anna a new start when she was just 19 months old but also helped a new mom adjust to the new world of having a child with disabilities.  Anna began receiving Medicaid Waiver Services when she was 13 and continued to receive waiver until she passed away in April of 2011 at the age of 23.

Throughout her life I learned way more from her than she ever did from me.  My husband, my son and I were blessed that God chose us to care for this “Angel Unaware”.

Anna led me to the job I have today and I have felt her right along beside me every step of the way throughout all of our fund raisers for the Walk for children.  I thank First Step for role that it has played in Anna’s life and now I am “working” for Anna as well as all of the other clients that are truly “An Angel Unaware”!   I say what a way to pay it forward!

Fondly,

Amy

Developmental Delays

What are Developmental Delays?

A developmental delay occurs when your child is delayed in achieving one or more of his or her milestones. This may affect speech and language, fine and gross motor skills, and/or personal and social skills.

About 4.5 million people in the United States have developmental disabilities, which are defined as severe, life-long disabilities attributed to mental and/or physical impairments and manifested before age 22.

Developmental disabilities result in substantial limitations in three or more of the following areas of major life activities:

  • The ability to live independently
  • The ability to achieve economic self-sufficiency
  • The ability to learn
  • The ability to be mobile
  • The ability to understand and express language
  • The ability to care for one’s self
  • The ability to accomplish self-direction

Without the right services and supports, the choices open to your child—including where he or she will live, play, and eventually work—are few.

He or she will be isolated rather than fully integrated and included in the mainstream of society. However, with individually planned and coordinated services and supports (for example, those involving health care, education, housing, employment, and civil and human rights protection) from many providers in the community, you can ensure the highest quality of life possible for your child and your family.

Making a call to First Step is the best possible step you can take in that direction.

Here are some of the most common conditions involving developmental delays and disabilities:

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Testimony by Donya – mother of Ali who attends First Step
Testimony by Donya – mother of Ali who attends First Step

Calling all Runners and Walkers!!! Donya J. Catlett would like to invite you to be a part of a fun memorable charity (5K Run/Walk) event for her daughter Ali, who has Battens disease. She is 4 years old and attends First Step. The event will take place on Saturday, June 2nd at 5:30 PM. at Lake Hamilton High School parking lot. They need your help with… Sponsors, Volunteers for event, snacks, and timers/for runners. Any donation on Ali’s behalf would be appreciated. For more information please call Laikin at 501-318-7747 or e-mail him at makeachange77@hotmail.com or e-mail Donya at dnyvise@yahoo.com!! Let’s see if we can help this sweet little girl and her family with this dreadful disease! Thank you in advance

My daughter Ali is  4 1/2 years old and will be 5  on July 9th.  She was diagnosed with Battens Disease on July 15, 2011.

Battens disease is a rare, fatal, terminal, neurological disease for which there is currently no cure.  Battens is fatal, in that, it only affects children & robs them of their ability to walk, to talk, to see, eventually leaving them as a vegetable to die.  Children with this disease do not get to play sports or even live long enough to go to their senior prom.  There are 9 different variations of Battens disease.  She has Infantile form which is the most fatal.  The life expecteancy for Infantile is 8-11 years.

Early intervention is key when dealing with any disease.  Ali is blessed with a great team at First Step.  She gets speech, PT, & OT therapies.  She loves all her teachers and nurses and they love her too.  Our family is so thankful for the individualized help they give her every day.

This disease does not have to be fatal.  We have much HOPE & FAITH.

We are currently raising funds for research to find a CURE for ALi and other children affected with Battens Disease.  We need your help & we need your prayers.   There are many ways that you can help.  We are currently recruiting members for  ”Ali’s Team” to help in this fight.  If you are interested, please call me at 501-617-5617.  I can tell you different ways you can help or where contributions can be made to Ali’s fund.

Please help us spread awareness about Battens by telling others.  Our family would appreciate your prayers.

Hearing Screenings / Hearing Evaluations

Hearing Screenings and Evaluations

Each center at First Step, Inc. has the ability to screen or evaluate the hearing of individuals, whose ages are between birth and adulthood. We have contracted with an audiologist for services for the past 15 years. Through the use of an audiometer and a tympanometer we are able to screen pure-tone air conduction hearing and determine the possibility of a referral to the primary care physician for middle ear problems. Utilizing the audiometers during this time speech pathologists and our audiologist have screened our consumers and referred them for further evaluation by our audiologist, observation by their primary care physician (PCP) or ear, nose and throat physicians (ENT). A part of that screening process is an observation of the middle ear and the movement of the eardrum (tympanic membrane). Tympanometry is helpful in diagnosing otitis media (ear infections, middle ear fluid) and distinguishing a sensorineural and a conductive hearing loss.

Some years after our audiologist came to First Step we ordered a sound proof booth to be able to evaluate more thoroughly the hearing of our consumers. We have VRA (visual reinforcement audiometry) capability which is used for screening the hearing of children who are 6 months through 2 years of age. The children are trained to look at the sound source. The children will receive a visual reinforcement for the correct acknowledgement of the sound source.

The most recent purchase for First Step has been an OAE (otoacoustic emissions) for each center which enables audiology assistants , audiologists, speech pathologists and nurses to screen every consumer who enrolls at First Step. The audiologist trains each of these staff members on how to operate this equipment. Otoacoustic emissions screens the hearing to the cochlea hair cells and the consumer does not have to make a physiological response. This screener is able to determine outer ear canal blockage, and the presence of middle ear fluid and possible damage to the outer hair cells in the cochlea. This equipment was utilized while First Step was working with two local hospitals, National Park Medical Hospital and Hot Spring County Medical Hospital, during the pilot project of the Newborn Hearing Screening in Arkansas. Our speech pathologists , audiologist and audiology assistant provided round the clock hearing screens to all of the newborns in those hospitals giving us a wonderful rapport with the staffs of those facilities which ensured better services for their consumers. When an infant failed the hearing screen at the hospital then they were usually referred through their pediatrician to First Step for further evaluation and treatment.

Through First Step’s commitment to providing quality care in the area of hearing and organizations such as the Hot Springs Community Foundation we have been able to purchase the equipment needed to provide such services. First Step has taken the lead in providing superior care for hearing issues in the communities we serve.

Way to Go First Step! by Suzie Downen

Recently, I was invited to the Ardmore Complex for a Birthday Party for one of your clients and my relative. I was so impressed with their teamwork between staff and clients. I used to be the case manager there and really enjoyed visiting the staff and clients. The group appeared so happy and shared in responsibilities for party and clean-up. Had most enjoyable time. Smiles were everywhere. Kathy Betz should be very pleased. I know I was impressed with their most impressive respect of others. I left the party with such a great feeling and just wanted administration to know that On Our Own has a great Case Manager in Amanda Patrick. Her Direct Care Janie Smith has a great relationship with her clients as well. Way to go ladies!

A Story of One Man’s Triumph

On Monday, July 19, 2010, David Allen Williams began a new job.  It wasn’t just any new job, it was his first job.  Congratulations David, but why does this make the news?  “If you could have seen from where he came, you would be totally amazed!” said Brett Chancellor, Operations Director at First Step’s Petty Center in Malvern.  “When I first saw David, he was nonverbal, made no eye contact, and gave only minimal indications of his needs and wants.”

David, now 35, has a form of autism spectrum disorder, a term used to describe one of many different sensory disorders.  When an individual has trouble processing information received from one or more of his/her senses (sight, hearing, smell, taste, touch) he or she is said to have a sensory disorder.  Although autism is the most common and most pervasive sensory disorder, and the numbers of children diagnosed with autism is on the rise, little is known about its cause and treatment.  A person with autism may indeed be extremely intelligent, but something short circuits the information received by the brain and does not allow the brain center to process it accurately.

David’s story began in 1978, when he entered preschool at First Step’s Petty Center in Malvern.  “David came to us when he was about three years old,” said Linda Kemp, First Step Associate Executive Director.  Susan Smoke, another First Step staffer, remembered David’s early years, “He was a beautiful child with brown hair and big brown eyes.  He was nonverbal but very observant.  He would stand and watch the children play but was very tentative about joining in.”  David’s early classroom instructors were Jan Kirk and Hester Hopkins who spent a great deal of time with him, singing songs and teaching him to sign the ABC’s.  Even with regular speech therapy his instructors never heard David speak. First Step continued to serve David after he began public school.  His teacher, Martha Hurst, reported that he would walk around with his head down and his eyes narrowed to slits or closed altogether.  He did begin speaking in short phrases, but would only talk to certain people and kept to himself.  His family moved to Hot Springs and upon graduation, David was admitted to First Step’s Hot Springs Adult Development program and remained there for several years.  In 2003, his family moved to Bismarck and David transferred back to the Petty Center.  With the smaller adult population at the Malvern center, David began to open up and talk to more consumers and staff.  He became friends with another male consumer who did not talk much and was difficult to understand.  Staff observed them sitting together and laughing.

When David told Linda Kemp that he wanted to live in one of First Step’s adult apartments, she couldn’t believe her ears.  “I knew I needed a witness for this one,” said Kemp.  “Before I left to find someone, I told David that I was going to bring in a person to confirm what he had told me.  I told him to speak up and talk plainly so that the witness could understand what he was saying.  I came back with Debbie Meeks, Adult Development Supervisor.  I asked, ‘David, do you want to live in an apartment?’ He answered me loud and clear.  ‘“Yes,” he said, “I want to live in an apartment.”’

Chancellor remembers, “David had no social skills and was considered nonverbal.  After moving into the apartment, he stayed to himself.  When anyone entered, David would run to the bathroom and lock the door.  Once, when I was with him, David stayed locked in the bathroom for two hours, screaming incoherent words at the top of his lungs.  I finally talked him out, and he calmed down a little. That was a pretty tough one.”

Chancellor continued, “About a year ago, different staff members began commenting to me about the words they had heard David say.  Our maintenance staff even mentioned things he had said to them.  That’s when I began to take notice of the change in David.  I had never heard him say anything, and all these people were telling me what they had heard.  I’ll never forget the first time I heard David speak.  We had taken the group of adults to a local fast-food restaurant, and David was sitting next to me.  We had been there a while, and the group was having a great time.  Johnny Brown (not his real name) is the class clown.  He’s always having a good time and trying to make the others laugh.  Well, out of the blue, David turned to me and said ‘Johnny Brown’s gettin’ on my nerves.’  I just about passed out, but I held it together long enough to comment, ‘Well, he’s kind of getting on my nerves, too.’  At that point, I knew David’s life was changing in a major way, and that change was for the better.”

Just a few weeks ago, Chancellor was standing in the hall of the Petty Center’s adult development facility, “David came up to me and said, ‘I want a job.  Can you get me a job?’ I couldn’t imagine that was even a remote possibility, but I thought that if David wanted to work, we would find him a job.  We arranged for David to assist the janitorial staff at the center as part of First Step’s Supported Employment program.  When he heard the news, David was ecstatic and couldn’t wait to start to work. “

The weekend before David was to begin work, Chancellor and other staff took the group on a trip to Branson and the Silver Dollar City theme park.  While waiting in line at one of the rides, the operator turned and asked David, “Are you excited?” meaning, of course, about the prospects of the ride.  David said, “Yep. Got a job; start Monday.  I’m excited.”  That evening the group ate at a Branson restaurant.  Chancellor said he was prepared to order David’s meal for him, but when the server came to David, he looked up and said, “I want a rib eye, medium well, and a baked potato.”  “I couldn’t believe it,” said Chancellor.  “I just couldn’t believe it! That was more than we were prepared to spend, but I thought if David could order a rib eye, I was going to buy him a rib eye.

Now, we’re back to where this article started.  Chancellor said, “David started work this morning.  He’s part of our Supported Employment program, working as a janitor’s assistant at the Petty Center.  This first day, he’ll only work for an hour, we don’t want to overwhelm or stress him.   He’s got the vacuum, and he’s running it around the baseboards of our hall areas, zapping bugs and dust and such.  It’s a bright day here at the Petty Center!  One of the women in my office has been crying all day.” After a laugh, Chancellor said, “I may have to send her home; she’s so overjoyed with David’s success.  We’re all just amazed and thrilled.”  After starting his new job, David has shown progress almost daily.  He now speaks to just about every co-worker and others he meets in the hall and is engaging them in a meaningful conversation.    According to Chancellor, “He’s a long, long way from the boy who would not speak or even look at anyone.”

The life of David Allen Williams is not the only success story at First Step.  There are many others, but to be honest, not every story is one of such accomplishment.  Sometimes we have to look through many dark clouds to find one silver lining.  This is particularly true for a parent of a child with autism and for those involved in treating children with the disorder.  Some children respond quickly and easily; for others, it may take years for a bright spot to appear, and still for others … well, that bright spot has to be diligently sought, and every leaf has to be turned over and over until one learns to appreciate even the smallest accomplishments.  The therapists, teachers and staff at First Step are too well acquainted with the search for triumphs, but they are there.

First Step has recently opened the Ann and Nick Tillman Project for Children with Sensory Needs.  Teachers, therapists and other workers are trained in a variety of methods and approaches because what works for one may not work for another.  This is a cutting-edge project and is the brain child of First Step Executive Director Pam Bland.  According to Bland, “The Ann and Nick Tillman Project brings the latest in treatment for children with autism to our service communities.  Within a few months, this project will be implemented in all of First Step’s seven service centers.  This is the most up-to-date treatment for autistic children, and we are able to offer it right here in our own community.”

First Step’s motto is “Making a Difference in Your Community.”  First Step has lived up to this motto once again.

A Testimonial from Jill Houpt about Ellie

Eleanor “Ellie” Houpt
Mosaic Trisomy 18 (Edwards Syndrome)

“Ellie was diagnosed with Trisomy 18 when she was five days old, and we were told at that time to expect severe, if not profound, developmental disability. We contacted First Step and received prompt, personal, step-by-step assistance in enrolling Ellie in early intervention, physical therapy, occupational therapy, and speech therapy at First Step in Hot Springs. She began receiving services at 3 months old, and we have been thrilled with every aspect of our time there! Ellie began full-time preschool at 18 months and graduated to Kindergarten in August 2010. Instead of sending her to public school, we were able to enroll her in the young school-age program at First Step, which provides an alternative educational setting for children who are unable to attend public school due to their disabilities. If Ellie had attended public school, she would have required full-time, one-on-one support from an aide to ensure her physical safety and sign-language interpretation to allow her to communicate. Thanks to the First Step School-Age program, I am able to concentrate on my full-time job during the day, because I know that Ellie is safe and happy in the caring, capable hands of the First Step staff.

When Ellie was diagnosed, we were told that she may never walk or talk, be able to care for herself or toilet train, and that she may never be able to communicate. Through many years of physical therapy, speech therapy, and occupational therapy, as well as special education in the classroom, Ellie has conquered most of these goals and continues to progress every day. I sincerely believe that the people of First Step do not simply go to work every day, but that they genuinely have love in their hearts for every child they treat.

Ellie has made remarkable progress far beyond what is expected for her condition for the following two reasons: 1) Ellie is a remarkable child, and 2) the support and encouragement she received from her teachers and therapists (and family) during her five years at First Step. Raising a child is never easy. Raising a child with a disabling condition is downright hard. First Step has consistently provided caring support that has enabled us not only to cope with disability, but to thrive in spite of it!”

A Heartfelt letter from Brett Chancellor

I want to take a moment to thank each and every one of you for your support of the First Step Walk.  All First Step causes I believe in and support.  But this particular event and the Tillman project strikes even a deeper sense of personal commitment and urgency.  Almost a decade ago, my wife and I had a child with Autism.  A child who did not speak, a child who was lagging on milestones, who had odd behaviors that we did not understand and my family found ourselves facing more questions than answers.  To understate it, we had quite a few dark days in the beginning.

As we started today, I thought about the similarities in our walk and raising a special child.  It was dark when we started but got a little brighter all along the way. Every step was difficult, some painful.  For every hill we climbed, we were met with another, and another and yet another.  There were times when I thought, “I can’t go another step, and one of my team (those with me and those driving by) would say, “come on, you can do it.”  Several times despite their belief, I was unsure.  But we made it.

This almost completely parallels what our families go through; dark days early on, but it gets better.  Difficult and even painful steps that have to be taken.  For every challenge met, another one ahead.  I think the greatest similarity and most important thing to think on is the team part.  I would have stopped long before my goal had my team mates not pushed.

To me that is the essence of what we are doing with The Walk/Tillman Project.  Pooling our efforts to provide that team that helps our families, take the steps, climb the hill, meet those goals.  Providing families with answers to those questions.  Providing people who make those darker days brighter.  Providing those who run along beside you and when you fall, say get up! Keep going!  And most importantly providing those who have the knowledge, skills and equipment to show you how to get up and keep going.

I mentioned earlier my son and our experience.  I have to tell you today, thanks to that team, which is only getting better!!!! We have a near teenager who talks, at times argues, really expressing himself well now.  It seems that the clothing we pick out is not longer agreed upon, which he voices well every day. It seems we have “discussions” on what time we need to go to bed.  It seems he asked to go to half a dozen places other than school every morning.  It seems things get a lot clearer for him and he seems to really understand when access to Nintendo DS or XBOX is in the balance.  We kayak, canoe, fish, ride four wheelers and sea doo(his favorite).  He packs his bags and calls his grandmother to come get himevery Friday night.

It would be less than honest for me to tell you that everything in our lives is without trouble, we still have obstacles, but who does not.  What I can without doubt tell you is we have many, many more good days, ………make that great days, than bad.  We are miles and miles down the road from those first early dark days I talked about.  Seems like a different child and family talking about it now.   Each and every member of that team we had, who made such a difference for us then, owns and helped make possible a little part of every great day we have today and for the rest of our lives.  Thank you all for taking the time to change our life.   Know that your efforts with Walk for the Children today will change the lives of many tomorrow.

After today’s walk, I’m headed home to recoup, I can’t help think of the words of that song, “I’m not as good as I once was but I’m as good once, as I ever was!!!!!!”

Thanks again for all your help!

First Step Artist’s work displayed in Washington, DC

Local Artist’s Self-portrait on display in washington, D.C.  – Exhibit Marks Anniversary for Disability Services

Matthew Phillips of Hot Springs is one of 70 artists whose self-portraits will be on display in Washington, D.C. during a special event on September 13 to celebrate the 40th anniversary of ANCOR, the American Network of Community Options and Resources.  ANCOR was founded in 1970 as an association of organizations that support community integration for people with disabilities. The artworks will be on display during the invitation-only special event, being held at the Smithsonian’s Donald W. Reynolds Center for American Art and Portraiture.

“This exhibit really brings the voices of people with disabilities into our celebration,” said ANCOR CEO Renee L. Pietrangelo.  “The remarkable energy, diversity and creativity of the pieces underscore the value of supporting community integration and self-expression for everyone, including individuals with disabilities.”

Also at the event, 22 individuals will be inducted into the ANCOR Foundation Legacy Leaders Circle, in recognition of their many years of service to the association and to the ideal of community supports and services.  “ANCOR is proud of these leaders, who have been at the forefront in making communities of choice a reality for people with disabilities,” said ANCOR CEO Renee L. Pietrangelo.  “And we’re especially pleased that the $30,000 raised by this class of inductees will support the professional development of the future leaders in our field.”

ANCOR is the national association representing more than 800 providers of community supports and services to more than 500,000 people with disabilities.  The association offers federal advocacy, professional and organizational development and access to innovation and best practices for and on behalf of its members.

Michael is a participant in First Step’s Art Ajar program that began in April 2008 as a means of providing a creative outlet for the adults served by the organization.  Through this program, local professional artists teach classes for interested consumers in the First Step Adult Development Program.  The group has displayed their work at Art in the Park, the Fine Arts Center and the Malco Theater.  They were invited to illustrate the publication, Natural State, a collection of 20 short stories from the Fine Arts Center’s “2009 Short Story competition.”  First Step serves individuals, birth through adulthood, with developmental delays and disabilities.  “Our organization is very proud of Matthew, and honored to have his work displayed in Washington, D.C”, said Joanne Mitchell, Art Ajar Coordinator   For more information about First Step, please call  (501) 624-6468.

Elijah Browning – Speech Therapy

We are writing this letter of appreciation to First Step, classroom 10, concerning our child, Elijah.

We just want to let you know how Elijah has progressed during the time we have had him. His speech is better. My husband and I can understand him better. He knows his ABC’s and numbers better as well as his colors. He is also catching onto word skills. He is listening to story time (I read to him every night).

We also noticed since he has been in First Step he has progressed tremendously in the few months that we have had him. We just want to thank the classroom 10 teachers and the school for keeping us up to date on Elijah’s progress. My husband and I wanted to give classroom 10 a pat on the back -WELL DONE – GOOD JOB – keep up the good work in being dedicated teachers and helping Elijah to grow.

– Mr. & Mrs. Browning