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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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Finding the Perfect Fit

Four years of college flew by before I even knew what hit me. There I was, a month or two away from graduating and still had no idea where I wanted to go, what I wanted to do or where I would fit in as a Recreational Therapist. Coming from a small border town, I knew that there was so much to explore in life and the options were endless but I had no idea where to start. I frantically looked for jobs close to home but every lead I found seemed to discourage me more and more each time. Finally, I threw in the towel and asked my academic supervisor to point me in the right direction. With a list of names and interview times in hand, I headed six hours away to Houston.

After a few interviews and internship position offers, I had twice as much confusion and disappointment because I knew that I had not found where I was supposed to be just yet. young adlut intern blogI showed up to my last interview with Easter Seals Greater Houston expecting to have the same experience, but had no idea what truly was in store for me. After sitting in an interview with my current supervisor, Ashley Nichols, for around two hours, I had finally found the perfect internship experience and wholeheartedly knew that I had found my place with the Easter Seals Greater Houston Adult Services Program.

The options for personal and professional growth that were placed in front of me here at Easter Seals is exactly what I had given up hope in looking for at other agencies. Being able to shadow Ashley, who is a master networking guru, has been a priceless experience in itself because I had the opportunity be connected with various people in the community. She taught me how to build professional relationships and to seize opportunities when you have them. Aside from that, Ashley provided outstanding guidance that has helped me grow tremendously as an individual and a professional. Through Adult Programming, I had the perfect experience in regards to recreational therapy in the aspect that I was able to work within multiple populations, which is almost unheard of as an intern. In the office, I was constantly surrounded by support, opportunities and some of the most invaluable people I have ever met. I had moved six hours away and was a little scared, yet I was never alone. I always had someone who made sure that I was adjusting okay to such a large change in life. To work in an environment where everyone is so warm and supportive of each other’s ideas and individual growth is sadly unusual in a workplace and in my opinion, is what makes the Easter Seals Greater Houston special to so many people. I know that no matter where I go or what I do in the years to come, the memories and people I have met through the Easter Seals has shaped who I am and will never fade out.

Morgan Stidham, Easter Seals Greater Houston, Adult Services

For more information on our Adult Services Program – Click Here

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No More Waiting for Help

The following post was written by the parent of an Early Childhood Intervention Infant Program client.

This is a testimonial on behalf of my son, who has been working with Tina, our ECI speech language pathologist at Easter Seals Greater Houston.               playtimeI cannot recommend her enough! My son was on the cusp of turning 2 years old and had only two words his vocabulary. I work in the field of special education as an assessment professional (however not in speech) and knew he was delayed. I was frustrated and distraught as a parent knowing that he needed help and not being able to get it for him. We went through surgery to put tubes in, and were put off by doctors for what seemed like forever waiting for the surgery, waiting to see if that corrected the problem, waiting on audiology appointments, etc. before I was finally able to get the referral to Easter Seals Greater Houston’s Early Childhood Intervention (ECI) Infant Development program.

Once Lawson was evaluated, Tina made sure to expedite his first session so she could see what “we were up against.” She has worked diligently to ensure we were able to get all of our sessions, and has been an incredible team player going to daycare and in our home so that we could ensure Lawson was generalizing his skills across all settings. In a manner of 2 months, Lawson is already trying to link together 2-3 words into phrases, is trying to communicate more, and is becoming less frustrated. While we have a lot of work left to go (as he still cannot say a lot and is far from intelligible), we would not even be where we are without Tina.

In addition, I work full time and cannot always be there for his speech sessions, Tina is an amazing teammate in that she will text me or call me after sessions to update me on his progress. While I may work, I care dearly about my son and want to know everything going on, she takes all the time I need to be involved and know what skills to work on during the interim periods between sessions. I could not sing her praises enough!

 

Lawson’s mom, Client Family, ESGH Infant Program/Liberty County

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Partnership, Encouragement, Progress

ECI mont co blog pic 1The following post was written by the parent of an Early Childhood Intervention Infant Program client.

After receiving the news from Matthew’s pediatrician to seek services with Early Childhood Intervention I was heartbroken. This was a second opinion and I felt like I failed. The first time we did not qualify, but luckily the second time he did. We began receiving services and were paired up with Ms. Perla, one of Easter Seals Greater Houston’s wonderful Early Intervention Specialists. Matthew began improving slowly. Speech was getting better and better. Matthew was learning new signs and ways to express his needs. As time went on I also began to learn more. I was able to give more insight to Ms. Perla and we considered him on target and exceeding his vocabulary goals. However, during this time we began to notice he was having sensory problems. With the help of Easter Seals Greater Houston’s ECI team we were able to make new goals for Matthew at our re-evaluation and began working towards them.

These new and emerging issues at hand were stressful. I have had days where I was a complete mess, unsure if I could follow through and handle this new test. Ms. Perla would send me comforting messages and encourage me as a parent with ZERO JUDGEMENT! So many “give up” or “give in” but she still supported me. I work hard every day. I take notes so I can focus on what’s the best for my son. Thanks to ECI I have been able to be a better parent and help my son learn and develop. I have learned more ways to work through certain situations, different ideas to try, what triggers something, how to react, what am I doing that may be making it worse, what to look for before it happens with someone else, and so much more!!!

ECI mont co blog pic 2If it wasn’t for Easter Seals Greater Houston ECI Infant Program we would be way further behind than we are now. In the beginning I was upset, scared, unsure, and in denial. Now, I am so happy to have Easter Seals helping my son and myself. Many people deserve to have access to and assistance from this amazing program. I know as we continue down the road my son will have a much more successful life due to them. Many thanks to the Easter Seals Greater Houston ECI Infant Program team, especially Ms. Perla who my son and I love so very much!!!

I am forever grateful!

Danielle, Early Childhood Intervention Infant Program parent, Easter Seals Greater Houston 

Easter Seals Greater Houston’s Early Childhood Intervention Infant Program has expanded and is now available in 12 counties. If you have concerns or questions about your child’s development, please call 713.838.9050, ext. 385 and request a free developmental assessment.

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Helping the Whole Family

The following was written by a family receiving Early Childhood Intervention Infant Program services from Easter Seals Greater Houston’s Fort Bend office.

ECI Ft Bend pic

My Keyla was very stiff in her body when we started with Easter Seals Greater Houston’s Early Childhood Intervention (ECI) Infant Program. She was refusing puree and solid foods by mouth. She would not take any liquid by mouth. It was hard for me to imagine her being able to eat, sit, crawl, stand or talk on her own. Our ECI therapists have worked very hard to help me learn how to help Keyla. I am so happy to say that she is now eating solids, finger feeding herself bite sized pieces of food, eating a variety of table foods and drinking liquids from a straw. She even speaks a few words now! She is sitting by herself and recently began to crawl on hands and knees. It makes me happy to see her behind me all, following me everywhere around the house. Thank you ECI for helping us help Keyla.

The Buritica Family, Early Childhood Intervention Infant Program, Easter Seals Greater Houston

Easter Seals Greater Houston’s Early Childhood Intervention Infant Program has expanded and is now available in 12 counties. If you have concerns or questions about your child’s development, please call 713.838.9050, ext. 385 and request a free developmental assessment.

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Breaking the Language Barrier

IMG_0522The following was written by our School Director about Yousif, a student that is thriving thanks to the individualized education he receives at Easter Seals Greater Houston’s the Caroline School.

Yousif is such a joy to have in the Caroline School. At the beginning of the school year he was very shy and did not speak much, as he is an English language learner. As the year went on, his language skills improved and he was able to say all the names of his peers and his teachers, as well as asking questions and telling stories every one could understand. He also built great relationships with his classmates, enjoying pretend play and coloring with them. We are so proud of your communication progress, Yousif!

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

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The Caroline School is now enrolling for the 2018-2019 school year. Join this incredible community focused on helping students of all ability levels ages 0-21 reach their highest potential. Our School Director, Tabitha Hernandez, would love to share with you the resources and opportunities your child would have at The Caroline School. Please feel free to contact her at 713-838-9050 ext. 362 or THernandez@eastersealshouston.org. You can also learn more at www.CarolineSchool.org.

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Family and Therapists Team Up

The following post was written by the parent of an Early Childhood Intervention Infant Program client who receives services in the Brazos Valley.

DSC_0023We’d like to explain what Easter Seals Greater Houston’s Brazos Valley Early Childhood Intervention Infant Program has meant to us, our lives, and more than anything, our daughter. Easter Seals Greater Houston’s Early Childhood Intervention Infant Program has transformed the behavior of our daughter in a positive manner through the weekly therapy sessions. Easter Seals Greater Houston’s ECI Infant Program came into our lives to help us and have been the perfect tool to help our daughter with speech/language & behavior therapy.

When our daughter turned 2 years of age, her pediatrician led us to Easter Seals Greater Houston because there was a delay in in her speech. Easter Seals’ ECI Infant Program staff members came and ran a full evaluation and afterwards we started the therapy sessions with no clue how incredibly helpful they would be to our child. As the months passed on we noticed great changes in our daughter’s speech/language and in her behavior. Before the therapy sessions she hardly paid attention, but by making this a key area of focus we have seen great, positive improvements in this area and others. We started to work hand in hand with the therapists in our parental role. All the dedicated time was well worth all the positive changes we see in our daughter today. The Brazos Valley ECI Infant Program therapists have not only helped us with the problem areas, but understand why and how they came to be, all the while treating us with respect. We are appreciative as parents for not only the treatments, but the care and effort to reach all goals with her. As of today, our daughter’s vocabulary has increased substantially, she makes basic sentences, pays (more) attention, has calmed down overall, and our entire family has noticed the progress that our daughter has made since she began working with our therapists.

We appreciate Easter Seals Greater Houston from the bottom of our heart, the beautiful work and care for all the families with whom you work with, starting with ours. The Brazos Valley ECI Infant Program staff have gone above and beyond for the well-being of our daughter. Thanks to Easter Seals our lives have changed for the better.

Sincerely,

Marquez Nevarez Family, Brazos Valley Early Childhood Intervention Infant Program family, Easter Seals Greater Houston

Easter Seals Greater Houston’s Early Childhood Intervention Infant Program has expanded and is now available in 12 counties. If you have concerns or questions about your child’s development, please call 713.838.9050, ext. 385 and request a free developmental assessment.

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