Tag Archives: Family Day Out

Caring for the Caregiver

The following was written by the parents of one of our beloved clients that have participated in Easter Seals Greater Houston’s Family Day Out and Respite Voucher programs for many years.

Family Day Out is a center-based Respite service 20171007_102818that provides respite care on Saturdays to families of children ages 6-14 with all types of disabilities. Our son, Brandon, and the other children benefit from arts and crafts, games, and playground activities and receive one-on-one assistance from volunteers. As parents we benefit greatly with much needed time to get caught up on anything we may need to get done (paperwork, house work …the list goes on) or even have a much needed day date! (Dates are far and in between!) Family Day Out also gives us much needed one-on-one time with our daughter. Children that have siblings with disabilities often don’t get as much attention due to the high demand kids with disabilities require. It’s a great opportunity to spend quality time with siblings.

What we love most about Family Day Out is that our son is able to spend time with volunteers, staff, and friends that over the years have gotten to know and love him.  Each session is also staffed by a nurse and a center director. It’s somewhere he feels 100% accepted and has tons of fun.

20161203_114712We are so grateful to have been able to look forward to at least one Saturday several months a year that Brandon will be well taken care of while having fun so we can have time to ourselves, guilt-free. This September will be a sad one since the Family Day Out program is only able to accommodate kids through 14 years old at this time and Brandon turns 15 at the end of September.

We also participate in Easter Seals’ Respite Voucher Program which allows us to select our own childcare provider for in-home care. These hours allow us to run errands and take a much-needed break while Brandon is with someone we know and trust to care for him. As Brandon has gotten older the respite hours to use at our leisure have become as much of a blessing as Family Day Out. Qualified sitters (those who can handle meltdowns, behavior issues, etc.) for children with disabilities have a much higher rate than typical sitters so the respite hour vouchers help tremendously when funds are already tight.

Easter Seals Greater Houston’s 20171007_130244

Family Day Out program and Respite Voucher program are truly blessings to ours and so many other families!

Thank you,

Jeff and Tiffany, Respite client parents, Easter Seals Greater Houston

Learn more about Easter Seals’ Care Giving Services.

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PNO = R&R

My husband, Doug, and I welcomed our wonderful son, Duncan, after our 39th birthdays. Having met at 21, we’d spent the better part of two decades dining at the best “cheap eats” in Houston, taking weekend jaunts in Texas, exercising daily, and enjoying the occasional happy hour. Quite simply, we appreciated the benefits of living as DINKS (double-income, no kids).

Dec 2015 Respite blog PNO 1So along came our beautiful baby. Overnight, our lives transformed in rewarding and challenging ways I never could have imagined. Of course, this is true for any new parent, but there exists an additional anxiety, concern and effort when you care for a child with special needs. Doctors’ appointments, therapy, testing, tutoring, special-ed meetings, financial challenges, and countless hours of online research: It’s just plain exhausting.

So, when we heard about the Easter Seals Greater Houston Respite Program, Parents’ Night Out, we were cautiously optimistic.  We were happily surprised at its affordability: $10 for four hours of babysitting by Easter Seals’ skilled volunteers and staff.  But, we know our son. He is fearful of new situations, despite having attended summer camps with Easter Seals Greater Houston. Bless his heart, he is visually impaired, has epilepsy and CP, so who could blame him?Dec 2015 Respite blog PNO 2

Our concerns were unfounded and he made fast friends at Parents’ Night Out. The volunteers exemplify patience and understanding, each offering a weekend night to care for our son, later telling us how much they enjoy Duncan!  Six months later, he asks to attend the “babysitting place” nearly every Friday night.  Doug and I have actually seen three movies and been out to dinner twice during the last six weeks! That reconnection is critical with the added stress of our days.

From respite for caregivers to summer camps and fun activities for children, Easter Seals is a blessing for thousands of people in the Greater Houston area. And the Graham family is proof of that.

-Catherine Graham, Respite Program client parent

For more about Easter Seals‘ Care Giving Services, click here.
For more about Easter Seals’ Camps and Recreation, click here.

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A Dear Friend of Easter Seals

tupperA Tribute to Lynne Tupper: A long standing, tried and true volunteer for our Respite Program’s Parents Night Out. Lynn will be greatly missed by our clients, staff, and the Houston community.

“I can’t believe she is gone. Lynne was my wonderful friend and also a friend to Easter Seals Greater Houston Respite Program. Even though it was hard for her to tear herself away from her job she loved so much, she always joined us for our annual Christmas Party. As a social worker for 40 years, I have encountered many healers whose hearts were big and who made a difference. But Lynne stood out at the top. She helped me see what really mattered, to examine our values and our hearts. No one can take her place. No one. My life was touched by her in a way that will be with me forever.”

Linda Latimer, Respite Program Director, Easter Seals Greater Houston

lynneLynne served as a devoted Clinical Director at the Occupational Therapy Center in Houston, TX for over 30 years. Lynne will be greatly missed; however, she will never be forgotten.

 

A memorial service for Lynne C. Tupper will be held on Tuesday, December 8th, 2015 at 2:00pm at St. Phillip United Methodist Church – 5501 Beechnut St. (At Renwick) Houston, TX 77096.

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Thankful

guppy pic 3I had some time to think last night at the hotel, and these are my thoughts of Thankfulness for Easter Seals Greater Houston– having given my husband and I a “respitality” voucher (a donated nights stay at a hotel) thanks to the generosity of Marriott at George Bush Intercontinental.  I’m not sure how we were chosen, but I am so very thankful we were. We’ve had that respite voucher for quite a number of months… I’ve known it was sitting in my planner for a most desperate time when the stars would align for us to have childcare and be able to use it. My first thoughts about it, is that so often when I’m at the end of my rope, when I think I can’t face another seizure, another moment, I would think of that as my sort of lifeline. “Well, if I can just get through until relatives come to visit, we can use that “golden ticket” to get away. We planned to use it when Team Guppy 1.0 came. But then the other side of that “respite break” is that because we are so isolated, when they were here, we had such a good time getting to actually enjoy them and their company and their help – and because they were here we got to do little Kayak trips daily and get away — we were so enjoying that, which we have been craving just as much as respite, that I forgot all about that “golden ticket” in my planner. I was cleaning out my planner the other day and saw that respite voucher at the hotel and saw that it expired this weekend so I had to use it. We didn’t have anyone here to stay the night with Brandon, and Todd is going to see Matt for Thanksgiving in a couple weeks, so I booked the room as a chance to stock up on some sleep! 🙂guppy pic 1 It was wonderful — I did sleep. I planned to do so much reading and Bible study, and did some, but mostly, just slept. Most mornings I wake up tired because I’m always getting up for something — letting the dog out, checking Brandon, etc. But with nothing there to do, I could actually sleep, and I woke up early enough, and refreshed enough to have my free breakfast that came with the room, and to come back home and go to church with Todd and Brandon. It was just amazing what uninterrupted sleep can do. And I think what was part of the refreshing part — is that while at home, it’s not that the work is “hard” in the sense that it’s physically draining (well, aside from seizures) it’s that it is constant. It is a constant state of interruption. A constant state of having to do multiple things at once, while being constantly interrupted in all of them. In cooking, I’m not only cooking our food, but Brandon’s ketogenic diet food. While cooking two meals, it’s redirecting Brandon to not use hands in eating his snacks. It’s cooking, redirecting, and then stopping to clean spilled whatever. Stopping all that for the potty schedule routine. Then it’s the coming back and trying to pick up where you left off. In our eating, it’s constantly checking Brandon, if he wandered off, or if he’s in the tub to make sure no seizure, no drowning. It’s just the “constant” of having a severely affected highly energetic and mobile child who needs constant guppy pic 2supervision/redirection. I thought about whether I had “fun” getting away and it wasn’t really about that. Fun, to me, would have been going Kayaking with Todd. Hiking with him. Sitting on the beach with him. Yeah, the romantic part of having a hotel room with my hubby would have been fun — but what our “Life with Autism” steals the most, is that ability to go places and do things together. When we have an opportunity to have help with Brandon, we want to run 1,000 miles an hour with our hair on fire. Respite to us, is to have a place for Brandon to go, so that for a day we can do those things. Brandon needs a place to go, things to do, just as much as we do. But our life with autism and how he is affected by it makes that have to be two separate things for us. No way we would want to be in the middle of Offat’s Bayou with Brandon in a kayak having a seizure, or deciding he wants to get up, or OUT. LOL This respite opportunity was what my body needed – and I’m so thankful to Easter Seals and Marriott for giving that to me. It didn’t work out for both of us to benefit, but I am very thankful I could! Family members and friends of those living “Life with Autism” — consider giving them a voucher for hotel stay for a night. Just the chance for them to go sleep! If there is no childcare for both parents to attend, at least like us, one of us could! Offer to stay the night for them, or if that is too uncomfortable for the parents, offer to stay during the day so they can do do something together. It’s just such a great need. Churches, like the YMCA’s and other places do, if you know of those in your congregation that have a child with autism, allow use of your building for respite so the child can go somewhere and the parents can enjoy their house distraction and interruption free! Like this was for us, it’s not always going to be the perfect scenario – but we must do something – and I am so thankful that Easter Seals had that voucher for families to use. I am so thankful for Church of Champions having respite days at their church so we can have somewhere for Brandon to go while we do errands together or just enjoy our house in peace. I am so thankful for Graceview Baptist Church and other churches who offer such programs as well as Easter Seals Houston’s Family Day Out and Parent Night Out. Our kids need fun as much as parents need sleep! I know so many parents who would covet such a “Golden Ticket” to know they have when they feel they can’t go any longer without a break. Please, give to Easter Seals Greater Houston for the purpose of respite vouchers at hotels. These churches I mentioned, and others, donate to them specifically for their respite programs — to pay staff if they need to hire help, or to pay expenses or supplies. Or kids need places other than home or school to go to just as much as parents need a quiet room and a good nights sleep. These are the gifts that are needed for families this Christmas. And all year-long.

MG, Parent

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Just a Little Makes Such a Difference – When IS Enough – Enough?

If you haven’t read From PalParent’s Blog you should – we hear this over and over again….

Caregivers of children and adult with disabilities or a disabling heath condition need so much more: more services, blog 2more community, more money, more time, more patience, more perseverance, and more of themselves.  Often there is just not enough to go around with the 24 hour/365 day constant demands on their time and energy.  They are just like you and I – they want to provide for their family, have a career, see their child go to school, put groceries on the table.  As a social worker running Respite Services with Easter Seals Greater Houston for twenty-one years, I have a long history of interactions with parents and caregivers who are telling me, in no uncertain terms, I do not have any more left to give. So like the PAL Blog – When Enough is Enough?

Only this week, I received a call for respite services and other assistance from a mother with a 2-year-old with Spina Bifida, a neurological condition which left the child paralyzed below the waist.  The dad left the family never to return, and is now living in another state and paying no child support.  The grandmother recently underwent heart surgery and had an anoxic episode in the hospital, leaving her with permanent brain damage.  The mother, Mary, has a great job, and obviously needs her salary to support her family, pay her bills, put food on the table. She has HAD to use all her vacation and sick time – and was in jeopardy of losing her job as a secretary.  Her young child requires urinary catheterization every six hours. For those who have not experienced this, it is not enough medical assistance to require a full-time nurse, but enough of a medical intervention that day care programs are unable to accommodate.  Programs which can provide support for this mom, such as the MDCP Program (Medically Dependent Children’s Program) have a waiting list in excess of 5 years and currently have over 22,000 waiting for these essential services.  To say our caregivers need more is an understatement. More support, more programs to help in situations like this, more respect, more understanding AND our community saying  “Enough Is Enough”.

blog 3With the help of Easter Seals Greater Houston Respite Program and The United Way Greater Houston, Mary was able to be helped at least for the short-term.  Mary is in process of interviewing four providers who will be able to do the care, until a more long-term solution can be found.   Mary was persistent and diligent and found her help and support.  Will it be enough? For her hopefully; for others….maybe not. The only solution is through advocacy and education of our policy makers to prioritize funding so that Mary, and thousands like her, will have enough – enough services and supports so she can have the rights we all have – the right to provide for her family, to keep her family together, the right to keep her son at home and the right to employment.  Now, Mary has her son at home and she kept her job and is not dependent on government subsidies. What support will be there for her with her next crisis? Enough is NOT enough.

Linda Latimer, Easter Seals Greater Houston, Respite Program Director

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Different IS Good, excerpt from guest post at Different Iz Good™ by Monica McDivitt

From a distance I heard dance music and I could see some children jumping around in a tent while the balloon crowns they wore on their heads bounced up and down. I immediately knew this was where we were supposed to be. My heart smiled and I thought, “It’s good to be different.” Yet, at the same time I didn’t feel like we were different at all. As we entered the area, parents and children we knew greeted us and any screaming, hand flapping or pacing behaviors someone else might find “odd” or “abnormal” or even upsetting were perfectly “normal” and fascinating to me.

Sam was nervous when we first arrived. She sat in her wheelchair stroller and held on tightly to John’s shirt and hand. She even frowned a little but as she began to adjust to this new environment, where the mixed smells of barbecue, popcorn, funnel cakes, cinnamon cashews, corn dogs, hot dogs, and hamburgers filled the air, she noticed familiar, loving friends and realized she was safe. It isn’t always easy taking Sam to new places. Sometimes she experiences sensory overload and she will begin to scream, cry or run away and hide. Other times she is okay. Each time I expose her to a new experience or environment I never know what to expect and I am always praying for the best but I am also prepared for the worst. This is all I can do. Sam is who she is and she will do what she does. She is full of surprises and this makes life…interesting.

There are days, weeks, even months when it seems like nothing new and exciting is happening and Sam’s progress is slow. Sam is 11 years old. She was born with a chromosome 18 abnormality called distal 18q-. One in 40,000 Americans are born with distal 18q-, which means that less than 7,800 Americans are affected by this disorder. As a result, Sam was born with a wide right unilateral cleft lip & complete cleft palate, severe hearing impairment, intellectual and developmental delays, ADHD, mood disorder, delayed myelination and autism.  When I first found out about Sam and her distal 18q- I was distraught. I wondered how and why and I wondered what I had done to make this happen. I wanted to understand why this had happened to MY little girl. I wondered why SHE was chosen to endure all of these challenges. I wondered why SHE wasn’t meant to be like everyone else. It was unfair. I had always imagined my little girl as a scholar, a ballerina, or an athlete. I dreamed of teaching her how to color, draw, paint and create arts and crafts. I dreamed of swimming, walking, running and riding bikes with her. I imagined her playing dolls and playing dress-up. I dreamed of shopping with her, taking her to the movies, taking her to Disneyland, riding the teacups, the roller coasters, and doing all the things I did and learned how to do when I was a child. I dreamed of teaching her how to cook like my mom had taught me. I dreamed of her first talent show, her first dance, her senior prom and the day John and I would send her off to college. I wondered whom and what would she grow up to be, but my dreams had to change.

Now, I believed I could only dream that Sam would hear my voice, make eye contact, sit up, crawl, stand, walk, talk, unclench her fists, eat, drink from a cup and just learn simple daily life skills. Each time a doctor shared some new diagnosis I felt as if my heart had been ripped out of my chest. The pain was unbearable and no matter how much I love and adore my Sam today, I do not think it is a pain that will ever completely disappear.  I am pretty certain that every parent of a child with a disability carries this pain because we have all shared similar dreams and experiences. It doesn’t matter what the disability or disorder is – autism, cerebral palsy, a chromosome abnormality, etc. It isn’t fair, but it happens and we end up feeling tired, angry, alone, depressed, besieged and defeated, wondering why it had to happen.

We, as parents, also make countless sacrifices but I will only point out a few. Goodbye to REM sleep, “Abs of Steel,” spontaneity, sleek sporty cars and compassion from the people we expect it from. Hello to baggy eyes and dark circles, extra pounds or loss of pounds, super structured days, modified minivans and people we never believed would judge us or make rude comments to us. Yes, because our child has a disability and is often unable to tolerate certain activities we upset our family and/or friends by skipping the big, crowded parties and events – not because we want to but because it is hard and it isn’t much fun when others stare at you (instead of help you) while you spend all of your time and energy chasing your child at the event to keep them safe, or to avoid a head banging, arm biting meltdown that can occur at any given second. We also do our job to fight medical insurance companies, fill out discouraging behavioral assessment forms, attend the 2-3 hour-long IEP meetings at school and follow-up with the state to find out what number our child is on the interest list for disability services – it could be 20,000 or 40,000. In addition, the medical bills are relentless, visits to the doctor and hospitals are frequent, and items and equipment such as diapers, “special” treats, cups, feeding tubes, leg braces, walkers, wheelchairs, adaptive communication devices and adaptive bicycles and swings are costly and usually out of our budgets – we buy them or find a way to get them anyway. Finally, babysitting and respite are difficult to find and if we can afford the vacations we all so desperately need to take, we must plan to bring our entire home with us, devise a strategy and pray we all survive the airport, plane ride or the long road trip.

It’s exhausting and there are days when I am so tired I just plop down on the couch and feel like crying.  But then a new reality kicks in and I take a deep look at my sweet Sam, her contagious smile and her innocent beauty. I recognize all of the special moments she gives to me each day. I see HER. Sam is a happy, funny, healthy, fearless, intuitive and bright child with amazing courage, strength, determination and resilience. Sam doesn’t know her life is challenging. As far as she’s concerned, her life is “normal.” Sam is nonverbal, doesn’t make much eye contact and doesn’t use American Sign Language consistently. Yet, she has the amazing ability to communicate without words. She pushes me towards the kitchen pantry and places my hand on the doorknob so I can open it and give her Cheerios. She walks me to the refrigerator when she wants a drink. She grabs my purse, slings it over her shoulder, takes me by the hand and walks me to the garage when she wants to go for a car ride. She takes my hand and walks me to the bathroom door when she wants a bath. She hands me her favorite duck toy when she wants me to play in her room. She gives me her bathing suit when she wants to swim. She is also on the Special Olympics swim team, has learned how to use her “swimming arms,” and won a silver medal in an aquatics 10-meter race. She has gone surfing in the ocean. She plays Challenger baseball. She participates in Special Olympics track. She rides horses and she has even gone zip lining – many things that John and I have never done!

On this brisk morning at the Rodeo Cook-Off, Sam wore a new dress, denim jacket and her black studded cowboy boots. Her pigtails were braided and she proudly wore the white, silver and purple beaded necklaces that one of the male volunteers had given to her when we arrived. She was content. She walked around, observed the entertainment and then decided to sit and eat (even though she’s usually not a “public eater”). There were burgers, hot dogs and chips but she chose to eat the Cheerios I had brought from home and, of course, the chips! When she finished she happily ran to the dance floor. John and I stood nearby and then she held John’s hands and they slowly began to dance. Sam was giving me one of those “my eyeballs are popping out of my head” moments that I couldn’t wait to share with my friends and family. She wore a smile that lit up my world and all I could do was smile in return. I noticed other people were smiling too and realized that my little girl was being exactly who I imagined she would be! My heart, the one I felt had been ripped from my chest one too many times, was filled with so much love and joy. I knew John’s heart was full too. On this rodeo day, Sam danced with her Daddy for the FIRST time!

When I see the wonderful things Sam is beginning to do there is little reason for me to dwell in pain or negative thoughts or focus on her disabilities. I look at my world in a whole new way and the important things in life become clear. Yes, Sam is different and will always be different. She is always in motion, carrying her fidget toys and babbling like a one year old. Her developmental growth has been a slow process but she has accomplished more than many of her doctors would have ever imagined. I have learned that I can still do all of the things I dreamed of doing with her (and more) but in a different way.

Different is good because being different makes Sam interesting!  Sam is a mystery. I have witnessed her power to give several medical students homework assignments (ha-ha).  Sam is a gift.  She has brought several extraordinary people into my life, has made ME different and has taught me how to nurture hope and never give up. She has also given me greater depth and has made me a much stronger, complete human being, with a special wisdom and compassion. Sam has helped me appreciate that I, too, have gifts and abilities that I never knew I had.

Sam is MORE than the little girl I had dreamed of, and I feel grateful and blessed. She doesn’t give up and I believe she will continue to make my eyeballs pop out of my head!  Sam inspires. Sam loves unconditionally. Sam is my hero. Sam is my world.

(excerpt from Guest post at Different Iz Good™ by Monica McDivitt – Monica blogs at Like a Butterfly.  Thank you for sharing Monica!)

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Family Day Out Starts Up for School Year and Gives Parents a Well-Needed Break

These are just a few of the thank you’s we get on a regular basis….

“Gotta tell you…I had a dream about you guys from Easter Seals…last night. You all were sitting next to our neurologist and I looked to each of you for help with a big decision about his care. That shows how much you guys mean to us….   Thanks for everything.”

“Hunter has been attending Family Day Out through Easter Seals for 4 years.  He looks forward to these Saturdays and spending time with all of the great friends he has made through this wonderful program.  The staff is very dedicated and knowledgeable in caring for children with special needs.  Each child is paired with a buddy who is very loving, caring and compassionate.  It is a very structured program and includes such fun activities as arts and crafts, games, dancing and outdoor play.  Family Day Out provides parents with a much-needed break on the weekends.  I have 2 other children, so I will usually take them shopping, lunch or a movie while Hunter is receiving excellent care.  It gives me the opportunity to do things with my other children that I would not otherwise been able to do.”  

“While we feel incredibly blessed to have such a special family, our resources are stretched to the max – our financial resources, our time resources, our physical energy, and our relational abilities.  One of the great values we have shared since we married almost 14 years ago is keeping a regular “date night”, whereby we can enjoy one another, discuss important things, have fun, and recharge our batteries.  We feel very strongly that the best thing that we can do for all of our children is build a strong and healthy marriage.  Not only will this provide stability for the children, but it will also enable us to work together to meet the needs of our family no matter how difficult or stressful life gets.  These “date nights” are a compass for us and they help supply the sanity, energy and strength we need to press on.  We would not be able to afford the childcare needed for these dates were it not for Family Day Out.”

“Before taking part in your program, I felt myself slowly becoming depressed due to the daily care and thinking about the future for my son can be quite overwhelming.  I am a firm believer that all parents need to take breaks to recharge so that they can be better parents.  When you throw disability in the family dynamics, I can tell you first hand, that it is much more intense.  Since we have used your programs, we have become better parents, more patient, strong, and ever so grateful.  It is caring people like you all that can and do make a huge difference in the families raising children with disabilities lives.”

**Family Day Out is a program which main goal is to provide a break to the parents with an outcome of reducing stress, abuse, family break down and institutionalization of individuals with disabilities.

FDO is a Saturday day-camp for children with disabilities ages 6 to 14 and their siblings ages 6 to 10. Children participate in arts and crafts and other fun activities. Volunteers provide each child with one-on-one attention. RSVP’s: Taken on a first come first serve basis starting the 1st of each month. Contact: Christine Ellery, 713-838-9050 x332, cellery@eastersealshouston.org

 2012 Houston FDO Dates & Locations:
Sat 3/10/12 at Katy Visual & Perf Arts Center
Sat 3/17/12 at Houston Parks Adaptive Rec Center
Sat 4/14/12 at Katy Visual & Perf Arts Center
Sat 4/28/12 at Houston Parks Adaptive Rec Center
Sat 5/05/12 at Mem Drive United Methodist Church
Sat 5/12/12 at Katy Visual & Perf Arts Center

2012 Woodlands Dates & Location: April 14, May 5, September 8, October 6, November 3, December 1; located at The Woodlands United Methodist Church, 2200 Lake Woodlands Drive, The Woodlands, Texas 77380. For information, contact Kristie at KCarlisle@eastersealshouston.org, toll-free 1(888) 825.9682, ext.472.

Easter Seals Family Day Out, http://www.eastersealshouston.org/Children/family-day-out.html. Volunteers and campers needed!  Support Family Day Out – Join Team Big Cats at www.WalkWithMeHouston.org.

Courtesy of the many thank you notes we receive from our clients.

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