Early Intervention, A Blessing for Your Child: Dialogue with Leah Seyoum-Tesfa, RN -Founder and President, REACH Families

“When it comes to autism and other disabilities, parents can have a hard time overcoming a sense of self-shame and social stigma.  This greatly hinders parents in finding proper treatment for their children.”  Leah Seyoum-Tesfa is a Registered Nurse and Founder of REACH Families of Dallas Texas.  REACH Families supports about 80 families throughout the U.S. with autism education and guidance in English, Amharic, and Tigrinya.  The non-profit organization helps parents connect to resources, provides parent education on various topics related to raising children with special needs and empowers parents by teaching advocacy skills. Also, the organization works with the East African communities to bring autism awareness to ensure early identification and intervention for children with developmental disability. Leah’s twin boys were diagnosed with autism just before they turned 3. They will celebrate their 18^th birthday in 2016.

 Leah is of Eritrean heritage but grew up in Ethiopia.  Her family emigrated from their original nation of citizenship, Ethiopia, to Rome Italy in 1980 because of Ethiopia’s conflicts, famine, and military coups.  Leah’s family finally settled in Dallas, Texas, United States when she was sixteen years old. 

Private school in Ethiopia had provided Leah with a reference point to build English skills though she was far from proficient.  After graduating from Skyline High School, she attended Texas Women’s University where she graduated with a Bachelor’s of Nursing Degree.  Additionally, she:

• had completed a certification program and worked as a Women's Health Nurse Practitioner, Obstetrics and Gynecology
• holds a certificate for Leadership Education in Autism and Neurodevelopmental Disabilities

She met and married neurologist, Ganana Tesfa, MD while working at Parkland Memorial Hospital.  Parkland is best known for treating President John F. Kennedy after he was shot by a sniper.

“Even as a healthcare provider, I did not have adequate information on how to care and support my boys when they were diagnosed with autism. I struggled to find resources and appropriate support outside of the school system.  Reach Families came from this desire to provide help that really wasn’t available for me.”

Several things motivated her into getting Reach Families up and running.  This was especially so for the horrible incident in which a parent took the life of their special needs child.  Leah believes that many parents show signs of clearly being mentally overwhelmed when initially given the diagnosis of autism. Caring for a child with autism can also be physically overwhelming  “I felt that lack of support for a mother to help her understand, cope with, and manage her child’s conditions may have been contributing factors in this case. In the immigrant populations, there may have been the additional weight of stigma, guilt or sense of being punished because her child may have been born with or had developed a disability.  Social pressure can reinforce a sense of harsh self-judgement as well.

“Over time, I found out that cases of autism are both under reported and under treated in the East African immigrant communities.  My perception is that parents tend to isolate themselves because of a stigma they may perceive with having a child with a disability.  So, I started going out to churches to break through those perceptions.  I encouraged families to seek help and talk about the needs of their children.  The organization continues to assist families by accompanying them to schools and social agencies to access resources and support needed for themselves as well as their children.  Our message was and still is, Come to us, we can help.  We do not see a stigma or punishment; we see a precious child and family in need.

“The organization  advocates for early intervention as well.  Educate yourself on the developmental milestones and monitor your child’s development.  If you see your child is not meeting the developmental milestones or if your mother’s intuition tells you something is wrong tell your child’s health care provider. Saying something isn’t wishing bad things on your child.  Early intervention is very important in possibly rewiring the brain, changing the developmental trajectory and improving the outcome for your child. I encourage families to continue pray to God if that is what they wish to do.  I strongly believe in prayers and that God uses people to answer our prayers. Early intervention might be the answer to your prayers and a blessing to your child. Get services as soon as possible.”

Southern Scene in Savannah

Southern Scene, a regional TV Show in Savannah, GA, has offered and interview based a submission Terra and I submitted back in early October.

Here is a portion of the letter:
////
Hope Comes in Pieces is a great example of how business relationships have shifted over the years and how they will occur in the future.

• Terra Smith and I worked on the project for a year, only meeting in person last week for the first time
• She was referred to me by a previous client, whom I have never met either

A celebrity endorsement, a strong central figure with an emerging and captivating story, a local tie-in with op-eds in regional and Spanish language papers, the future of business relationships - this sounds like a great story.  I would love to speak with you about it.
////

Persistence, respect for a producer's time demands, and patience were factors in landing the interview. We had some very helpful local advocates as well.

We are working on an interview for Terra with one of the Indiana Stations.  Look for other announcements as the new company stands up in 2016.

Al Hardy

President, HardeRayne 

Media Content, Healthy Living, Advocacy

Join the Autism Telesummit - We kick off on January 15th!

Hello:

I’m so excited to extend an invitation to you for the FREE Autism Recovery Telesummit.

Event: Autism Recovery Telesummit:

Why Listen-In on the Telesummit?

1.  Top Global Autism Experts Offer Recovery Strategies
2. Top Autism Recovery Experts Give Strategies To Improve Communication With and
   
   Health For Your Autistic Child

Telesummit Focus:

★ How your child can speak, comprehend, communicate more

★ Change tantrums, screaming and self-stimulation into sweetness and smiles

★ Create positive changes in the brain

★ Discover why diet is so important and hear diet choices that work

★ Make eye contact and say, “I love you, Mama”

★ Get lifelong support for your child and family

★ Hear RECOVERY STRATEGIES THAT WORK from everyday moms

★ And so much more!

  

We kick off on January 15^th!

  

My colleague, Luminara Serdar is hosting this incredible event.  She is deeply passionate about returning health and a more typical lifestyle to your child, with the hope that they are one day off the autism spectrum.

“Yes! Sign me up for the Summit!”

                                   or 

Click here for more information and to register:

Sincerely,

Terra Smith

P.S. Know anyone who needs support with their child with autism? Please forward this invitation to friends, family, teachers and therapists today!

Proofs for Paperback, Hope Comes in Pieces

But Mia, these are only the proofs. 

Part 2, Michelle Nickleberry, Autism Education and Training for Flight Crews and Law Enforcement

Missed Part 1, Click here


Part 2:

Michelle, went on the say that Tori was always the one that got sick and still tends to be that way.  As with many parents, Michelle discovered the hard way that finding a pediatrician who strongly considers a mother’s observations and intuition is a key part of finding said pediatrician.

“Two PhD Psychologists, two MD Psychiatrists, an occupational therapist, and a speech therapist , six people observed her from 9:00 a.m. until 1:00 p.m.  I took a break and took her home.  I returned from the break with my mother and received a diagnosis of severe autism.  The panel told me that Tori would never get better.  They said she would only get worse and that we should be prepared for her to spend the rest of her life in our house.

Michelle snickered at the diagnosis initially,  “Autism… “Six people observing Tori for four hour…? Not only am I Tori’s mother, I have a Master’s Degree in counseling.  I had done the research on how autism may look.  Six people to tell me that… really?  Then, it hit me like a ton of bricks.”

According to the doctor, Tori would get worse… worse than not speaking, worse than barely crawling.  She took a moment to ask herself, Why are you crying when you knew what it would be? The moment didn’t help.  “Mom and I cried.  It was hard to drive home with Tori’s very poor prognosis.

“On top of all that, while my insurance paid for the diagnosis, it would not pay for the treatments related to autism.   My company self-funded our insurance coverage.  Under Federal Law and State Law, they chose to opt out of coverage for autism treatments.   A single mother at forty-five, money was already tight… with medical bills...  But, I just could not accept such a poor outcome for my daughter.”

Michelle saw that she needed to educate herself.  She looked into the standard practices of treatment for autism.  These were Applied Behavioral Analysis (ABA), occupation therapy, and physical therapy.  The pediatrician talked about drug therapies which she chose not to do.  That was the path she remained on for a while.

She started looking for alternatives to understand more of Tori’s conditions and behavior, especially her stims.  “Stims are self-stimulated repeated behaviors Tori uses to calm herself down. Her stims took the form of falling back and doing snow angels on about any surface.”

Despite being tight on money, Michelle went to her first Generation Rescue event, Autism One in Chicago in 2011.  “There, I learned about diet, essential oils, biomedical treatment, and the Son-Rise Program.   My head was spinning with so much information.”

Michelle started doing two things when she returned from the conference, using natural soap and lotions, and learning more about Son-Rise.  “I really noticed a difference when I used a friend’s homemade soap.  Tori spoke more words.  She started putting her sentences together.

“Son-Rise of the Autism Treatment Centers of America was created by Barry “Bears” Neil Kaufman and Samahria Lyte Kaufman.  Going there became a priority though I didn’t have the money.  Son-Rise gave me a scholarship to cover a part of the cost.

“I took a week off work and went to Sheffield, Massachusetts to attend the program.  It helped me to see inside Tori’s stims.  Son-Rise taught me to do what she does when it comes to acting out some behaviors.  It shows Tori that she is loved, that there is nothing wrong with her.  It taught me to see the world from her perspective and to see what she may be responding to.  When Lexi and I first started joining her in making snow angel movements, Tori would stop and look at us.  That was a good thing.  She would get up and move our legs in the way she wanted them to go. That was interaction.  Then, she would lie back down on the floor and do more snow angels with us.  Over time, she just stopped doing them altogether.  Son-Rise goes on to say that you should reflect a life in which your child will want to join.  So, Tori, Lexi, and I do some silly stuff in our house that generates hugs and kisses which wasn’t happening before.  These programs were so helpful to Tori’s improvements.  I speak out now.  If there is anything going on about autism, I try to be there to support it, share my experiences with what has worked or hasn’t worked for Tori?”

I asked Michelle, “Is that how you came to get involved in the air travel program and can you describe that to me?”

“That’s just one of my twelve jobs: modeling… handgun licenses and safety, acting…. On this one flight, we had a teenaged boy on the aircraft who sat by a female passenger.  He started rubbing her leg and her arm.  She became very upset and saw it as an assault.  I went to take a look.  I sat by him and saw his reaction, no eye-contact, no interaction.   I went to speak with the passenger to explain. She was slow to hear that puberty can be more problematic for kids with autism.  The crew calmed down.  The passenger calmed down.  A male passenger volunteered to sit next to him.  The police didn’t come.

“I heard about a program in El Paso with my airline’s job.  Kiddos with autism go through the full screening process.  They are issued luggage, check-in, go through security, pat down, board the aircraft and take a seat.  Parents need this type of support.  Flight crews need more training because autism diagnoses are projected to increase.  It’s called a spectrum for a reason; meaning that, flight crews with no orientation whatsoever are bound to create bad outcome for the child, other passengers, crews, and airlines, especially so with police departments.  And that’s already happened.  I want to help educate staff to identify and de-escalate these situations so that a child and others can continue with their lives as planned.”