The Important of Early Childhood Intervention #ECIWORKS

Rose was adopted from China in November of 2018, at the age of 33 months.  She has Down syndrome, and spent the first 33 months of her life laying in a crib, with very little human interaction.  As a consequence, she is severely delayed in her overall development, and has very, very low muscle tone.  Because of her age, Rose was only able to receive services through Early Childhood  Intervention (ECI) for two months.  Lacy Alvarado, our service coordinator from Easter Seals Greater Houston’s ECI Program, made sure that Rose had the best therapeutic intervention she could possibly get during those two month through the Brazos Valley team (PT, OT, Case Management, Nutritional services, Speech and more).  In addition to working with Rose every week on a wide range of developmental goals, the ESGH BV Team provided us with invaluable advice, and directed us to all the best service providers to meet Rose’s needs.  With their help, Rose has made amazing progress, meeting many of her goals each and every week.  Before starting with ECI, Rose had very limited usage of her left side, she couldn’t sit without bracing herself on her legs, and was completely unable to feed herself.  In just two short months, Rose is now using her left hand and arm to complete all kinds of tasks, she can sit up straight without using her arms to brace herself, she is able to bring food to her mouth for self-feeding, she is beginning to use her arms and legs to “army crawl”, and she is learning how to follow simple directions.

 

With the help of Jana Aguilar, her physical therapist through Easter Seals Houston’s ECI Program, Rose has discovered that she has legs, and is beginning to bear weight on them, moving one step closer to eventually crawling and walking.  We are so grateful for the Brazos Valley Team’s help through the Easter SealsECI Program, as they have set Rose up for great success as she continues to grow and develop.  And having these services provided in our home has been extremely important for Rose, allowing her to work with Lacy and Jana in a familiar place.  Coming from years of neglect in a foreign institution has made Rose very fearful of unfamiliar surroundings, and very easily overstimulated by new people and places.  So having Lacy and Jana come to our home was vital to her success.  We will be forever grateful to Easter Seals Greater Houston / ECI for beginning Rose’s journey of healing and development in such an amazing way, and we will the team so very much.

Rose’s Mom

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Spring has Sprung

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It’s Spring – Let’s find flowers and bugs!

The Caroline School is studying flowers and insects. We love hands-on learning, going on bug hunts, learning about life cycles, and watching things grow.

Check us out Here!

 

Tabitha Hernandez, Easter Seals Greater Houston, The Caroline School Director

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Lucky Strike!

I’m Emily Padora and I have been interning with Easter Seals Greater Houston for the past few months. I am supervised by Ashley Nichols, the Adult Program Director, which means I get the privilege of hanging out with these wonderful adults twice a week. Just last Saturday, I got to go bowling with a few of them! I expected it to be fun, as most things are with these guys, but it was more than just fun— it was heartwarming.IMG_1645.JPG

Each participant got their own lane, with accommodations based off their individual needs, to bowl for as long as their hearts desired until it was time to go. I loved seeing how happy just a simple game of bowling made the participants and enjoyed watching them make strikes, splits, or just celebrating hitting a pin. It was truly something else. I also got to speak with the mother and sister of two of our participants; they were sharing with me how much they appreciate what Easter Seals and the Adult Program has done for them and their family. The mother was almost in tears, expressing to me that most people outside of this organization and program don’t pay much attention to her boys. It makes me happy and proud to be working with an organization and program that promotes growth and encourages inclusion and individuality.

 

Thank you!

 

Emily Padora, Easter Seals Greater Houston Intern

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Celebrating World Down Syndrome Day

1 in 762 people are born with Down syndrome and there are approximately 6,000 people with Down syndrome in greater Houston. Children and adults alike with Down syndrome are benefiting from our ECI, Caroline School, playgroups, BridgingApps, Adult Program and more. Here is just an example of one of our many success stories!

Adri’s journey continued on a smooth path as she made steady progress, gaining independence in all areas of development. Adri 1 She was eating a larger variety of foods (also receiving additional nutrition through her G-button), began walking independently, and using more words and phrases to communicate.  At 3 years old, Adri graduated from the Easter Seals ECI (Early Childhood Intervention) program, and transitioned easily into the PPCD (Preschool Program for Children with Disabilities) class with her local school district.

As most journeys hit challenges along the way, Adri’s journey took a terrifying turn.  In January 2018, Adri became very ill.  Her parents made two trips to the hospital ER one weekend, where she was diagnosed with “just a stomach virus”.  Her health did not improve.  When at her pediatrician’s office on Monday, Adri’s left arm began jerking.  Suspecting she was having seizures, Adri was transported by ambulance, for her third trip to the ER.  After given numerous tests, and losing the ability to lift her left arm, Adri was taken, by ambulance, to UTMB.  The EEG and MRI indicated no seizures, but her fever continued, and her condition worsened.  Since no neurologist was on-site, Texas Children’s Hospital sent their ambulance to pick her up.  Adri was intubated before she left in that ambulance.  Once she arrived at Texas Children’s, Adri was taken straight to the ICU.

After multiple tests, on January 25th, the test results showed Adri had Adenol virus which “mimics” the flu.  Children with Down Syndrome may have weakened immune systems, and Adri became susceptible to the virus.  The Adenol virus triggered Moya Moya, a common, though not frequent, underlying condition sometimes present with Down Syndrome.Adri 3  Moya Moya caused progressing restricted blood flow to the brain, depriving certain areas of the brain of oxygen and glucose.  The MRA and MRB tests revealed Adri suffered a massive stroke to the right side of her brain.  Adri lost the use of her left side of her body – she was unable to use her left leg, left arm, and left hand.  Her speech was also affected.  Adri began rehab therapy, to regain strength, and use of the left side of her body.  During her month-long stay at Texas Children’s Hospital, Adri also had brain surgery on February 19th.  The neurosurgeon tried to create new blood vessels on the right side of her brain.  Her parents endured this traumatic time through their faith, and support from family and friends. As her mom stated, “We had a lot of people praying for her.”  Adri was discharged on March 8th.  In order to regain her strength, and focus on recovery from her stroke, Adri stayed home from school and began receiving out-patient therapy.  She had OT (Occupational Therapy) and Speech Therapy two times per week, and PT (Physical Therapy) one time per week.

Last August, with the start of a new school year, Adri began the next phase of her journey.  Today, she walks independently again (with a slight drag of her left foot), feeds herself a variety of food (still receiving additional nutrition from her G-button with 4 feedings a day),  uses 3-4 word sentences to communicate what she wants, uses her left hand as a “helper hand”, and knows her letters, most shapes and colors, and counts to 20.  Her dad commented Adri has had a strong will, even from birth, and is “feisty”, which helped her recover.  She has surprised her therapists with how well she is doing.  Adri attends PPCD Monday through Friday from 8:25-11:55 am, and receives out-patient therapy two times per week.  Mom reported Adri loves riding the bus home from school, and enjoys “tooting the horn” to let mom know she’s home.  Adri loves to sing, dance, and watch YouTube videos.  Her mom added she’s “very funny”.  Adri has fun with hats, dressing up, and looking in the mirror.  She comes up with new words and sentences every day.  Adri greets people, says what she wants, and still gives amazing hugs!  On her last brain angiogram in the Fall of 2018, the neurosurgeon stated the brain image now shows “no stroke”, and the medical team can’t explain it.

When requested to look back where their journey began, Adri’s dad reflected on their family’s time with the Easter Seals Infant / ECI program:

     To really come home with a child with Down syndrome….well, one of the most unexpected things in our lives.  We all cried.  To receive help from Easter Seals Infant Program was great!  Really was a tremendous help.  At first, we thought we were all alone with this.  The ECI staff became like family.  They didn’t just do their sessions.  They listened to what we needed.  Therapists recommended what Adri needed, then helped us resource it.  We really miss them.  They were a big time help with her progress and almost entirely the reason Adri was school-ready for PPCD. Adri 2

Adri’s dad said he wanted to offer this advice to parents of children with Down syndrome:  “Pack your patience.  Really take time to get to know your child.”  That is sound advice for parents of all children.  Adri’s parents’ high expectations for Adri have enabled her to progress in her development, recover from a massive stroke, and look forward to the next steps of her continuing journey.

Sharon Mott, EIS/Transition and Outreach Coordinator, Easter Seals Greater Houston

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Care You Can’t Pay Enough For

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“My experience with Early Childhood Intervention (ECI) through Easter Seals Greater Houston has been extraordinary.  The staff has been exceptional. I’ve always felt that Charles’ success has been important to them from my first meeting with Sarah his coordinator with ESGH. She would inform me of anything she felt could benefit Charles beyond therapy services. Every therapist that Charles has had seemed to take a special interest in him. Although I knew they had other clients and all the children were important, they just had a way of making you feel special. They have been committed to his growth potential and meeting his established goals. They take the time to listen to my concerns and would find ways to help me rectify them, even when it was regarding how the therapy was being done. I’ve been able to trust this group with the care of my son. When he would whine through therapy, I knew that they weren’t going to do anything that would hurt him. I’ve never had a session in which I’ve felt Charles was just another kid they had to see doing a repetitive job as robots. That’s care you can’t pay enough for. Having a special needs child has been challenging and rewarding. I truly feel that with Easter Seals Greater Houston’s ECI program, I’ve had a team to help me give my son the best start and get him on a road to success.”

Shalemeiko Freeman, Mother of Charles

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Let the Camps Begin

“It’s hard to believe that our camps for the Spring of 2019 are over! We have had such a blast these past couple of months at camp. This Spring, Easter Seals has hosted two wonderful weekend camps at Camp For All. We kicked off the New Year by running our second session of First Light Family Camp, a weekend retreat for veterans and their families! Though this camp was held in late January, we had beautiful and sunny weather all weekend long. Ten families joined in on the fun; we arrived on Friday night for dinner and had a campfire at dark- complete with s’mores and sing-a-long songs! Saturday was jam-packed with fun activities; we were able to participate in cast fishing, horses and barnyard, and even got to dress up in the costume closet and have a fashion show! Throughout the weekend, we broke into small groups to discuss stress relief/management, coping mechanisms, and even got to do some relaxation yoga! It was a fun adventure for our families to join us at camp for the first time!

We hosted our Spring session of Camp M.O.S.T. (Miles of Smiles for Teens) earlier this February! As always, camp was a blast! It was a fun reunion for campers and volunteers from the fall to get together again! The weather for this session of camp was chillier than usual, but our group braved the cold to participate in all the awesome activities camp has to offer. This session of Camp M.O.S.T. was Olympic themed, and everyone got in on the fun and light-hearted competition. During the weekend, we broke up into four teams; each team got their chance to compete in the Olympic events, ranging from “Counselor Curling” to a donut eating competition. The weekend also included some educational and inspiring Jam Sessions- where campers were able to work on skills such as advocacy, education, and other skills. Throughout the weekend, we were inspired by various videos and interviews with awesome Paralympic athletes! On Sunday, we had to say goodbye during our closing ceremony, but we are so excited for our next session of camp in the fall!”

Kenzie Richard, Camps Program Coordinator, Easter Seals Greater Houston

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The Unexpected Journey

“When Bellemere was first born, as excited parents welcoming our second child, we never would have imagined the journey we would be faced with upon her arrival. After a month in the Neonatal Intensive Care Unit, countless specialists and doctors visits, we finally learned we were blessed with a child who has CHARGE syndrome. Bellemere was first born ECI extra pic.docxWith time, we found out Bellemere was deaf, her physical strength would be delayed and she is a silent aspirator which means she could take no food or liquid by mouth due to choking risks. Bellemere had a MickeyTube placed so she could get her nutrition through a tube in her stomach.

Our family was introduced to Easter Seals Greater Houston’s Early Childhood Intervention (ECI) program  after one of many hospital stays. Aliza was our case manager and she guided us along the way. With the help of Anita (physical therapist), Britni (Early Intervention Specialist), Elena (Occupational Therapist), and Brenda (Speech Therapist), we were taken through the next steps in Belle’s journey until she turned 3 years old. These therapists came to our house weekly to work with us which was crucial in limiting her exposure to germs. With their help, guidance and patience, Bellemere has mastered crawling, cruising on her feet while holding on to things, and walking with the assistance of a walker. She is also now able to feed herself pureed foods (something we never thought we would see her do), communicate using sign language, use her fingers to grasp small objects and many other skills that are necessary for her daily life. Also after discovering that Belle was deaf, our Easter Seals ECI case manager connected us with AI services, which supplied us with a deaf education teacher who also came to our home to work with us.

Not only was this amazing group of ladies able to help us with Bellemere’s development, they also helped prepare us for transitioning to the school district by her 3rd birthday. We will forever be grateful to ECI and these therapists who came into our home to help our sweet Bellemere succeed. I highly encourage any parent to contact ECI if they feel their child needs any assistance with their development. Thank you ECI of Easter Seals!!”

Krishna Hernandez, mother of Bellemere

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