Loving. Growing. Advocating.

Chelsea is a 22 month old Easter Seals Greater Houston client Chelsea L pic (5)who was born with a very rare gene disorder, GATAD2B syndrome, which results in the “loss of function”. There are approximately only 11 cases known worldwide.  Characteristics of this disorder affect all areas of development from cognitive delay, low muscle tone, speech and feeding delays to sensory processing delays.

Chelsea has been in the Easter Seals Greater Houston Early Childhood Intervention Infant Program  (ECI) for the past 14 months.  She receives physical and occupational therapy along with specialized skill training.  Chelsea lives at home with her Mom, Brittany, her Dad, Cody, and her 3 year old big brother, Bradley. With the help of ECI therapists and family support Chelsea has made huge strides over the past 14 months. Mom stated “When we first started ECI services Chelsea was 8 months old she could not even hold her head up.  I couldn’t carry her like a typical baby. ECI has helped Chelsea development in ways I never knew possible.”  Chelsea is currently able to roll, sit on her own for extended period of time, hold her own bottle, beginning to finger feed herself and is able to stand at her couch with supervision to interact with her big brother! Mom stated “I’m more confident now that ECI providers have taught me the skills to help Chelsea’s development.  With the help of ECI my daughter is coming along great!”

Chelsea Linn 2 (1)Chelsea’s Early Childhood Intervention therapist shares that Brittany has become a huge advocate for her daughter and others who have been diagnosed with GATAD2B syndrome. Brittany has even traveled to Austin to encourage funding for this extremely rare gene disorder. Brittany is a true example of the power of a parent who advocates for their child!

Kimberly Sporrer, Early Childhood Intervention Infant Program, Easter Seals Greater Houston

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Chaos and Trauma for a Family with a Child with Special Needs

reat_familykevinjohnson-4.jpgThe following story was written by BridgingApps’ Co-Founder, Cristen. Cristen and her son Vincent, who has special needs, were Easter Seals Greater Houston’s Walk With Me 2017 Ambassadors and have been dear friends of Easter Seals Greater Houston for years. Cristen graciously shared her story to show how having a loved one with a disability compounded the difficulty and stress faced during Hurricane Harvey.

 

Our house was built in 1955 and has never flooded. We typically have a modest hurricane and emergency kit prepared during Hurricane season. During Hurricanes Katrina, Rita, and Ike, I evacuated with both my sons, while my husband stayed to prepare and salvage the house.  As Harvey moved closer, we decided that this time we would not evacuate, but would shelter in place.

You see, my 14 year old son, Vincent, who has Down syndrome, a visualVincent-and-Cristen impairment and extreme sensory issues, generally is a good traveler, but sometimes he has difficulties with transitions. As he has gotten older, he has also gotten more opinionated, making an evacuation less desirable. This time, I made sure that we had enough medications, water and food.

However, we were not prepared for the amount of rain that kept coming and coming. We lost power in the middle of the night on Saturday. Our home is located 3 blocks from Brays Bayou, and we watched the water rise, then crest, then continue to rise on our street, and then in our yard. Most of the homes in our neighborhood are one story homes, and we could see our neighbors begin to flood. The water came into our garage, and we thought it was not long before it would come into our home. We decided to evacuate our home and go to a neighbor that was higher two blocks away.

In the span of about 30 minutes with zero planning, we threw important papers, picture albums and some clothing into our attic. We scrambled to get all of Vincent’s medications, shoes with orthotics, two pairs of different prescription glasses, incontinence supplies, and two days’ worth of clothing into backpacks and garbage bags. We attempted to save his $1500 adaptive stroller by throwing it on top of our car, because we knew it would take forever to get approval for another one.

My 17 year old son Martin volunteered to carry my 80 pound son Vincent to our neighbor’s house. My husband and I carried everything else. It was a challenge to explain to Vincent, who has a cognitive disability, that we needed to put on his raincoat and walk out in the pouring rain into water that was nearly waist deep on his brother’s back. My goal was to do it in a lighthearted way, but my voice broke, and it became impossible. Tears were streaming down my face, so I was glad for the rain to camouflage this awful fear in front of my children.

As we plunged into the cold water, it was amazing how small things like the sidewalk, bricks, tree roots, curbs and other small obstacles became huge obstacles, causing Martin to stumble, trip, and nearly drop Vincent multiple times. The truth is that if they fell and he went under water, the current was so strong, I am not sure that we would have found him.  It was hard for Vincent to see out of his glasses with the rain coming down, and it must have been terrifying for him. His preferred spot in life is on the floor, as it is predictable, steady and safe.

Martin had to rest, so we got to the front porch of a house at the intersection of our street. As we rested there, we saw people chest high in water carrying their dog. We had no idea where they were trying to go, and I am not sure they did either. At that moment, we saw a kayak two houses away. My husband got their attention, and it turns out they a couple in their 70s and offered to take us one by one to our friend on the next block who was on higher ground.  It was a given that Vincent would go first, so I had to explain to him that he needed to get into a “special boat” with complete strangers to get to our friend Carolyn’s house. As we maneuvered him into the unsteady kayak, he slowly sat on the lap of a woman named Diane. I kissed him and told him that I would see him in a few minutes. I simply could not believe how strong the current was, swiftly rushing towards Brays Bayou, as the kayak had to navigate across the intersection with my most vulnerable child.  I watched helplessly and had to trust that he would be ok.

It was at that moment that I broke down and had what I imagine was a FULL ON panic attack. I was unable to breathe and nearly fell down. My sweet husband Daniel, thought I was having an asthma attack and asked where my inhaler was.  In the pouring rain, in the middle of a swift river of water I wanted to smack him for not realizing that I was having a PANIC attack, not an asthma attack.

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It seemed like FOREVER when the kayak returned reporting that they had safely deposited Vincent at our friend Carolyn’s house.  One by one the rest of us were ferried to her house, where we waited out the rest of the day and night of continuous rain and no power.

On Monday, when the water had receded enough, we returned to our house and watched the news that the forecast showed nothing but rain. Though Brays Bayou had gone down its banks a bit, with the power back on in our house, the weather reports were nothing but rain and prediction that Brays was going to crest again.  We immediately decided to evacuate a second time to another friend’s house about 2 miles north of our home. This decision was based completely on the best place for Vincent. We determined where we would go based on which friends of ours had not flooded yet, did not have a cat (allergies), and had enough room where Vincent could have his own space because of his sensory issues.

We returned to our house on Wednesday to begin the clean-up and on Saturday had to be evacuated AGAIN because of a bad gas leak in our yard.  We hadn’t even unpacked from the 2nd evacuation, so it seemed to be easier than the other two, but we as a family were nearly at a breaking point emotionally.  Vincent’s daily schedule is predictable, planned out and communicated to him to reduce his anxiety. The previous 7 days had been everything but predictable. It was emotional, stressful, unpredictable, and frustrating.  For most families dealing with this hurricane was horrific, but for our family with a child who has cognitive and sensory issues, it was tremendously difficult.  Luckily our house sustained only minor damage, but the toll it has taken on our whole family will take weeks to recover.  It has changed the way I will prepare for disasters, and it will change forever the way that we discuss it with our children.

Cristen Reat, Parent and BridgingApps Co-Founder, Easter Seals Greater Houston

As of today, thousands have been begun to receive direct client services as well as clothing, medical equipment, and assistance from Easter Seals Greater Houston. These families have been through a major trauma; please donate to help us meet their needs.If you or someone you know needs assistance, please contact us at Harvey@eastersealshouston.org. If you or your company would like to partner with Easter Seals, please contact us at Info@eastersealshouston.org.

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Countless Success and Growing

Easter Seals Greater Houston’s Early Childhood Intervention Program (ECI) is for children from birth to 36 months and includes a comprehensive range of services including developmental services, speech, physical and occupational therapy, nutrition, vision, hearing and case management services which are all provided in the family’s home or daycare.  All of the children eligible for early intervention have a serious delay in at least one area of development or a diagnosed medical condition that places them at high risk.  Effective September 1, Easter Seals Greater Houston’s ECI program will expand to serve Brazos, Burleson, Grimes, Leon, Madison, Robertson, Walker and Washington Counties. The Infant Development/ECI team will serve 1,400 children each month with countless success stories like Ja’Shawn.

Ja’Shawn is a handsome 34 month old littleJeShawn Blocks 1 boy that has been in ECI since the age of 12 months. He failed his newborn hearing screening at the hospital and was born with asymmetric and abnormal pinnae, which has resulted in a severe to profound hearing loss.  Since that time, he’s received Easter Seals Greater Houston’s Early Childhood Intervention services such as Occupational, Physical & Speech Therapy, Specialized Skills Training, and Case management during his enrollment. With his diagnosis, he also benefits from Auditory Impairment or AI services though the public school system. During the visit-the AI teacher, Ms. Peggy was providing therapy to him.  The uniqueness of ECI’s visit shined though during their interaction. Ms. Peggy and Ja’Shawn were baking cupcakes and frosting them. Ms. Peggy explained they counted the cupcakes, labeled during the mixing, and also washed the dishes when done. These routines based interventions help Ja’Shawn learn to sign each of the tasks. For example, he signed “cookies, please”, “thank-you”, “help, please” He is able to follow 2 step directions and signs up to 3 words together.  Ja’Shawn’s mom, Sabrina, also says he reads lips when other adults are not able to sign with him.

JeShawn 1Ja’Shawn turns three soon and has been evaluated for the PPCD, preschool program for children with disabilities program with his local ISD.  Sabrina is hoping he’s accepted to a special school in the district that has a signing program and ECI will help her advocate for that to ensure smooth transition of services!

If you have concerns or questions about your child’s development, please call 713.838.9050, ext. 385 and request a free developmental assessment.

Early Childhood Intervention, Easter Seals Greater Houston

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Miraculous Little Melody

The following was written by an Easter Seals Greater Houston client parent whose adorable little girl is participating in the Early Childhood Intervention Program.

Meet Melody! She is the baby of her family and the youngest of three girls. And she has each of us wrapped around each one of her precious, short, little fingers.

Melody has been a surprise from day one. It was a surprise to find out that we were expecting again at that time and even more of a surprise when we received a prenatal Down Syndrome diagnosis at 10 weeks of pregnancy. Again and again, during her development in the womb we came close to losing her, but each time she pulled through. God protected her. Knowing she would be born with multiple heart issues, we carefully planned her birth at a trusted hospital where her care team, whom we worked with during pregnancy, was ready and waiting for the big day. I was not expected to go past 36 baby Melody eci 2017 pic 2weeks of pregnancy but again Melody surprised us and waited until just two hours past her due date to make a shockingly fast and extremely dramatic appearance in her Mama’s bathtub at two in the morning with only her mommy and Daddy present. No time to get to the hospital and we barely had 911 on the phone when she decided to join us in great haste. There she was, our beautiful little baby with tons of curly dark brown hair and gorgeous brown eyes. It was a terrifying experience but thrilling to finally meet her! Talk about surprising!! By our God’s grace she was born safely and pinked up and started breathing on her own right away. It took 45 minutes for an ambulance to reach us and in that time we just held her wrapped up in a towel, cried and prayed.

We had had lots of time to prepare since we had an early prenatal diagnosis and so while she was still in the NICU we made contact with Easter Seals Greater Houston’s Early Childhood Intervention and requested an evaluation for as soon as possible once she was discharged. Those days were so very exhausting with all of the feeding difficulties she had so I cannot remember the exact age that she was evaluated by these caring people with Easter Seals’ ECI program but I do know that it was swift and we started both physical and occupational therapy right away. Melody has been such a little warrior princess all along and it has been thrilling to watch her meet milestone after milestone, while we have faithfully worked​alongside our therapists. Even though for the first six baby Melody eci 2017 pic 1months she had two holes in her heart (as well as two other heart issues) multiple illnesses, both a lip and tongue tie (which were both revised at around eight months old) and serious feeding struggles, Melody continues to surprise and wow us; like when she suddenly decided to start breastfeeding at eight and a half months old when her mama had given up the dream of getting to share that bond with her. She nursed for six weeks and then she was done but those were priceless times.

She is truly such an incredible gift from God! One we never even thought to ask for ourselves, but He graciously gave anyway, knowing that we needed her in our lives. She (and her doting big sisters) fills our every day with so much joy! Melody is currently just past fourteen months old and is sitting up beautifully, crawling as fast as lighting, pulling up on everything and showing some real interest in walking! She gives enormous hugs and kisses all day long, waves hello and goodbye, drinks through a straw like a champ, has learned how to fake laugh, blows the sweetest kisses, claps her darling, square shaped, little hands and says “Yay!”. She also says “Dada” all the time much to her father’s delight. She loves everyone and literally draws crowds wherever we go. Grocery shopping with her is a nightmare. Ha! Our family is so very thankful for the Easter Seals’ ECI program and look forward to each session we have with our wonderful therapist. Melody is going to do great things with her life and Easter Seals is making for some fantastic stepping stones.

Mrs. Davis, Early Childhood Intervention client parent, Easter Seals Greater Houston

 

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Appreciating Family Dinner

The following post was written by Easter Seals Greater Houston’s longtime Early Childhood Intervention Program Community Outreach and Program Training Coordinator, Kimberly Sporrer. It shows a mere glimpse of the positive impact her hard work has had on one of countless ECI clients and families she worked with over her 21 years of dedicated service.

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I met with one of my clients today, and Audrey, Liam’s mom, discussed how much progress Liam has made since being enrolled in Easter Seals Greater Houston’s Early Childhood Intervention Infant Program, commonly referred to as ECI.

 

Audrey reports that she is so pleased that Liam can now let her know when he is hungry instead of whining and pointing to various food items. Additionally, Mom discussed that Liam is now able to sit with the family to eat his meals. Before ECI, he would walk around the house while taking a few bites at a time, and he would throw tantrums if made to sit in his high chair. Mom said family dinners are now stress free and so enjoyable!

Mom also stated that she is grateful that she was given the infant pic 2strategies to create a more structured environment for Liam. She discussed that Liam’s ability to anticipate events during the day (lunch, naps, bath time, etc) results in less tantrums and a calmer demeanor.

She is excited and encouraged by the rapid pace of Liam’s progress and is looking forward to hitting new milestones soon!

Kimberly Sporrer, Early Childhood Intervention Infant Program, Easter Seals Greater Houston

Easter Seals Greater Houston’s ECI Program helps children ages birth to 36 months with disabilities and developmental delays achieve their goals in cognitive, social/emotional, communicative, adaptive and physical development. Learn more here.

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Pretty Eyes, Chubby Thighs

baby4Madalynn is an absolutely delightful little girl who gives a big smile to everyone she meets. Her mom, Amanda, is very pleased with Madalynn’s progress and wanted to share her story.

When she was just 10 weeks pregnant, Amanda found out her baby was going to be born with Down syndrome. Amanda researched on her own and tried to educate herself on the diagnosis. Amanda thought she was prepared, but when the diagnosis of Down syndrome was confirmed after Madalynn’s birth, she emotionally had to go through the acceptance process. She shared that the hospital staff at Texas Children’s Hospital was very helpful, educating her more about the diagnosis, and referring her to Early Childhood Intervention (ECI) of Easter Seals Greater Houston.

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The assessment team came out quickly, and Madalynn began receiving ECI services at about 2 weeks old. The newborn needed OT (Occupational Therapy) due to feeding concerns. Though Amanda was worried about the feeding issues, Amanda’s biggest concern for her sweet daughter was “she was not really connected”.  Madalynn was quiet and not noticing people around her.  After receiving help from Easter Seals’ ECI, and following through with the therapist’s suggestions, Amanda was excited to see Madalynn begin to progress.  At 2 ½ – 3 months old, Madalynn started connecting with everyone around her. Today, seeing Madalynn at about 10 months old, her mom is amazed at what she can do.  Amanda admits that she initially had low expectations due to the diagnosis.  After seeing what Madalynn was capable of, her mom did not want to hold her back.  “I include her in our daily life no matter what it is, from the beach to the park, she is there playing with us.” Madalynn now sits well independently, gets from her back into a sitting position, uses her hands to play with various toys, is beginning to clap her hands, rolls and belly crawls to get toys she wants, gestures “up”, and babbles “baba”.  Feeding issues have been resolved (love those baby rolls!), and she is eating some table foods.  This quiet little baby, previously so “unconnected”, now “soaks it all in”, focuses on people, and demands their attention.baby

When asked about Easter Seals’ ECI, Amanda responded:  “I’ve learned so much from ECI.  I’ve learned tons!  With my other children, I didn’t pay attention to how they moved; they just did it.  ECI helped me realize how important the best ways to move are for her.  That’s why she’s come so far and doing what she is today.”baby3

As she described Madalynn, Amanda stated:  “She’s gives you the biggest smile ever, just talking to her.  She just brings so much joy to others.  Everywhere we go, people stop to talk to her.  Just gives everyone joy.”  Her mom also shared the exciting news:  Madalynn’s picture will be featured in the 2018 Down Syndrome Calendar.

Amanda, Early Childhood Intervention Client Parent, Easter Seals Greater Houston

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Home Sweet Homeownership

If the headlines are to be believed, it’s been a tough few years for the first-time homebuyer.  Reports circulate of homes listed in the morning and under contract by the evening.  Interest rates are inching up, credit scores are tightening, and those pesky student loans mixed in with car loans and credit card debt are creating a debt-burdened buyer with little wiggle room to take on an additional mortgage.

Yet despite the unfriendly market, attendees of our Down Payment Assistance Workshop given by Easter Seals Greater Houston in The Woodlands, continue to realize their homeownership goals. As class settles in Saturday mornings, and we begin to discuss available down payment assistance programs, the conversation around the table always seem to return to two main concerns:  where am I going to get the money for down payment, and how do I dare add a mortgage payment to my already hefty debt load.

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I’m happy to say that the first question has a simple answer.  There are a variety of down payment programs designed for the homebuyer lacking the out-of-pocket funds for a home purchase which may be combined with a number of great mortgage loan products.

To the second question, there is no simple answer.  Creating a realistic budget which controls spending and reduces debt continues to be the subject of scrutiny from social scientists to behavioral economists, with agreement as to the need, but little consensus as to what constitutes a successful plan.

In our present-day digital world, the proliferation of budgeting and spending apps designed for your mobile device of choice has been overwhelming.  Mint.com, the  ‘Cadillac’ of apps, with a reported 20 million users to date, set the standard in app technology for linking all financial accounts, and with one stroke, allowed a user to monitor the flow of dollars in, dollars out.

Pocketsmith.com, referred to as a crystal ball for your bank accounts, generates what ifs scenarios through delightful images of your future if you stick to your budget –  key word here being if.

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YNAB.com, You Need a Budget app, preaches zero sum game approach, with every dollar assigned a ‘job’.  As the app says, you are in effect, the ‘maestro’ in charge of sending every dollar to its pre-determined role; i.e., savings, vacation, credit card debt, etc., before buying that impulse item.  The thinking here is that if every dollar coming in is already pledged to some expenditure, then you are less prone to splurge on that fun spur of the moment experience not included in your master plan.

As software designers have become more bold, recent apps have devised more and more ingenious ways to move dollars from the ‘to be spent’ column to savings.  For example, Acorns.com focuses on your pennies by rounding up your expenses to the next dollar and investing in a pre-determined investment portfolio.

Digit.com app takes an even bolder approach to policing your disposable income by sifting out anywhere from $5 to $50 of your fun money and stashing it safely away in a savings account.  Their website states that this dollar round-up is accomplished so surreptitiously, that “you should never notice its missing”.   (Somehow, I think I would notice!)

Yet despite all these sophisticated apps, we still struggle to control our spending.  For most of us, the recommended emergency fund of 3-6 months of living expenses remains a pipedream, and paycheck to paycheck living is far too common.

Maybe the problem is that budgeting apps have not gone far enough in making spending so unpleasant, that we are forced to become a nation of savers. If we look outside the app world of money management, you find some pretty extreme versions of self-help strategies conceived to reach your goals.

For those people who renew their New Year’s pledge every year to exercise on a regular basis, Equinox, a health club chain, has designed a chatbot that reaches out to members weekly to “encourage” them to stay on track with their exercise regime. (I think the word “encourage” here could be a euphemism for nag or hassle.)hoyo-staff-and-family-close-up

For those people who struggle to wake up mornings, there is a very annoying alarm clock called Clocky on the market which doesn’t just beep you awake, but actually jumps off your bedside table and runs off to the far corners of your room.  Needless to say, if you want to turn off Clocky’s beep, you have to get out of bed and chase it around the room. You would start your day on schedule, but probably not in a very good mood – always trade-offs!  Do we really want or need to design budgeting apps with similarly irritating functions to help us reach our financial goals?

I suggest that there are other approaches to achieving a financial stability that opens the door to homeownership.  Easter Seals Greater Houston offers a variety of classes focused on credit building and debt reduction through our HUD-certified Homebuyer Education Classes.  As a great first step towards homeownership, our Down Payment Assistance Workshop covers a range of assistance programs, mortgage products, and income/debt ratios review in determining how much house you can afford.  The combination of peer-support group classes and one-on-one counseling is invaluable in helping you create a realistic action plan that moves you forward to your goals.

The proper money management app can serve as a great budgeting tool for individuals working towards specific financial goals, but are only part of the equation.  The Easter Seals housing staff is here to provide you with comprehensive counseling services to ensure that your financial plan will take you where you want to go.

Katy Thorstenberg, Housing Program Manager, Easter Seals Greater Houston

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