Category Archives: child stories

Looking forward to Walk With Me

by Eva Delmonte

Eva is 12-years-old and was a volunteer at last year’s Walk. Recently, she came in to volunteer on her day off from school to help get ready for this year’s event. While she was here, she had the opportunity to meet Mung, one of the Honorary Ambassadors. She also took a little time to write some of her memories from last year.

I absolutely enjoyed the Easter Seals event. It was very fun to be at the zoo. They even provided water, other refreshments and hotdogs! The best thing was walking around the zoo and seeing the animals, especially the giraffes! After the event I got to explore even more because you get all all day pass if you go to the Walk. I loved this event and if you come, I know that you will too!

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Eva and Mung

To register for Walk With Me, visit http://www.walkwithme.org/philadelphia

Wheelchairs and Accommodations at Northcott

by Sandy Masayko

This is the fourth post in a series of post from Sandy’s visit to Australia

Exploring the farm is part of the fun of living there. But for an 11-year-old boy who was being jostled about in his chair because the standard wheels on his current chair are not designed for uneven terrain, exploration was not so much fun and not really safe. Adapting the power wheelchair so that his young client can drive all around the dirt roads on his family’s farm was the focus of Northcott OT Santheesh Thiruchelvam’s day on Feb. 15. We accompanied Santheesh on a one-hour drive into the country to meet with his young client and the boy’s family.

Santheesh had arranged for a vendor for an Australian wheelchair company, Glide, to bring wheelchairs with wider tires out to the farm for some test drives. As soon as he was in the new chair, the boy took off down a dirt road, turned around and returned with a grin on his face. He really liked the smoother ride on the larger tires. Next challenge was driving into his parent’s van. This test revealed that the tires were too large for van entry. Next trial was with a chair fitted with slightly more narrow tires. The second trial proved that with the narrow tires chair could go up the ramp.

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OT Santheesh Thiruchelvam supervises his client’s trial with a power wheel chair adapted with wide tires for uneven terrain.

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Although the tires on this wheelchair proved to be too wide for the child to drive into his parents’ van, when he tried another chair with more narrow tires the child was successful. His OT, father and Cristen Reat of Easterseals Houston look on.

After returning to Northcott, we met with Tara Ozturk who is an Accommodations Services Manager. She oversees the operations of several community living arrangements where folks can live in their own apartments, in shared or independent housing. Support is given as needed from the workers on staff according to the plan developed with the customers. We visited an accessible garden apartment complex where 12 people live in 8 apartments with some common space for barbecues, gardens and meetings. Residents proudly showed us their apartments. Northcott has a network of housing and supported independent living services throughout the area, giving people with disabilities choices in housing.

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Tara Ozturk, Cristen Reat, a Support Worker and Sandy Masayko chatted in the garden courtyard of a shared housing apartment complex.

Read the first post here, the second here and the third here.

Cheltenham High School: Twelve Years of Holiday Giving

by Adrienne Young

When my daughter Amber was a junior at Cheltenham High School she was also on their Charities Committee. In 2004, they were looking for a new organization purchase holiday gifts for, annually. Amber immediately said, “What about Easter Seals?!” Since then, the tradition has continued. This is the twelfth year that each homeroom at Cheltenham is given names of several preschoolers in the Bucks Division, and based on what their favorite toy items are, has made gift purchases with their own money.

The Charities Committee comes with Mr. Hasty, their Advisor, in a truck loaded with presents for every child in our building. They participate in our Holiday Sing-a-Long and then spend time with the preschoolers and their family members chatting, playing games and eating pizza. Watching our preschoolers open their gifts with excitement puts smiles on the faces of all of the Cheltenham students. I also see this relationship as a gift to the high school students, because they are learning the importance of giving and making a difference in the lives of others.

We so appreciate their generosity and look forward to continuing this tradition with Cheltenham High School for many years to come.

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Please Don’t Tell Me You’re Sorry

by Brittany Reiger

As time goes on and I add more kids to Team Spectrum, I hear the phrase “I’m Sorry” more.

My kids are overboard quirky and I do not make them “hide” that. So, I find myself telling strangers quite often that all three are autistic. I have no shame in it, and I feel if people know, they will understand and be more accepting. Then, I wait for it…what they’ll say. Most of the time it’s “I’m sorry.” I sometimes get “WOW!” There are also the times people just stare at me like a deer in the headlights and do not know what to say.

I get it.

Before I was thrown into the land of autism, I would not have known what to say either. I too may have looked like a deer in the headlights.

So, I am here to help you come up with different things to say.

First and foremost, there is no need to be sorry. I am not sorry. They are not sorry. Is our life tough? Sure! Do they make it that way on purpose? No. Do I have the slightest idea what I’m doing? Nope. Is my head spinning every day? Absolutely.

As a matter of fact, there are days I think I should haul myself to the doctor and get myself the same happy liquid Benelli is on.

But here’s why you shouldn’t be sorry..

My kids are probably the coolest people I know. I may be biased, but they are absolutely kick ass kids. I don’t always feel I deserve to be their Mom because they are so cool. The reason parenting them is hard and I have my days, is because they speak a different language than I do. As a matter of fact, they have a completely different brain than I do. I am really hard on myself all the time about whether or not I am doing the right thing for them. I am sorry that I probably fail them or do not understand them enough, but I am NEVER sorry for who they are.

They have taught me things a typical child wouldn’t. They have taught me patience, humbleness, devotion, hard work, and perseverance. They taught me to be selfless and to be a good person. They have taught me words aren’t a necessary thing, all you really need in this world is love. They have taught me there is not a one size fits all for intelligence. They have taught me to forgive more easily. They have taught me that you do not need to worry so much about everything. Most importantly, they taught me that it is in fact imperfection that is beautiful.

My children will love you no matter who you are. Benelli’s best friend is a homeless man who plays the bongos on the streets of Philly. She doesn’t care about his past or who he is, she loves him because he includes her, he remembers her. I have watched countless families turn their heads away from this man and tell their children not to look, while mine are having a rock out session with him on the streets with his bongos.

My kids do not care what is cool. They do not care about the latest toy craze. They do not care when we walk through the toy section. My kids would be perfectly happy to play with a stick or a leaf.

When we are outside, they look to the sky squealing and flapping, the biggest smiles you could ever imagine. I wish I could see what the world looked like to them. How amazing would it be if we all saw our Earth that way? Maybe we would treat it better.

They teach me lessons every single day. They do not hate, they do not fear. They love, they accept.

So, do not be sorry for me. In fact, I may feel sorry for you. I may feel sorry that you have not had the same opportunities as me to see the beauty in the world being guided by some of the most beautiful souls to bless our planet.

So, next time someone tells you that their child/children are autistic, give them the biggest smile you can and ask them if there is anything you can do to make their life better. Because even through the hardships, even on those days that we can’t muster anymore strength, we get through from the beauty our kids have shown us.

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Memories from a Friendship Academy Graduate

by Grace O’Brien

Grace attended the Friendship Academy from the age of 2 1/2 until kindergarten. Today, Grace is an honor student in the sixth grade. Over the winter break, she came to Easter Seals to volunteer. She also wrote her very first blog post about her experience in the Friendship Academy.

Friendship Academy is where I went to preschool. I loved it there. While I was there, I made many new friends. I also learned how to spell many words such as red and yellow.

I loved all of my teachers. Some days in after care, I did yoga! One day in after care I painted my nails. During the summer camp, I learned about camping. I also learned about the clean-up song, which I used to use with my friends when I was little. I occasionally start singing it without even knowing it.

While I was there, I learned a lot about diversity. I learned how to treat others. If I hadn’t gone to the Friendship Academy, I would be a completely different person.

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Grace performing in her holiday show at the Friendship Academy

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Grace taking pictures of the holiday show this year

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Grace helping the music therapist Grace with the program

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Grace with one of her classmates, Cara, from Friendship Academy

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A Day In The Life: Raising Three Autistic Toddlers

by Brittany Reiger

Thump. Thump. Thump.

I wake from the thumping of the dog’s tail at the end of our bed. I turn to look at the clock. 1:47 am. I roll over and listen.

Thud. Thud. Thud. Thud.

Here she comes. I sigh and get out of bed to see my 5 year old running down the hallway, with all three of her comforters.

“Benelli, let’s go to the couch”.

We do this about 4 nights out of the week so she knows the drill. We both climb onto the couch which is nowhere near big enough for the two of us. I lay there looking out my big sliding door wondering how long it will take her to fall back asleep tonight, cursing the Melatonin gods for not working longer. She wiggles her body all over the couch, squealing, getting the sensory input she so loves and craves. I drift off. I wake a few minutes later to her trying to get up.

“Benelli, go to sleep.”

She hops back on the couch & continues wiggling & speaking in her own ‘Benelli language’. This back and forth of me drifting off to sleep and her trying to get up to dance around continues until I hear my husband’s alarm go off at 5 a.m. I am always so relieved to hear that sound, unlike most people. I get up and ask him to relieve me until he leaves for work so I myself can get a little more sleep until I have to start my busy day. I fall asleep.

6 a.m. he wakes me and I begrudgingly drag myself out of bed. Benelli is finally asleep on the couch.

“When did she fall asleep?”

“5:30”

He has made my pot of coffee already that I will drink all of before I leave for the day at 8:30. This hour between me waking & the other two rising in an hour is the quietest time of my day. I savor it. I make each lunch for the day. Mine, Benelli’s, Adeline’s, & Gunner’s. Each child has their own food preference and so I make three separate lunches containing completely different foods. Benelli, mac n cheese and yogurt. Adeline, pop tarts and cereal. Gunner, peanut butter sandwich and fruit snacks.

Benelli wakes. She comes into the kitchen and says, “muuulk” (milk). I grab her bottle and fill it with her 1 mg of Prozac and her milk. The Prozac has been her godsend. She was such an angry, violent, lost child before it. I make sure to start everyday with it, to make her brain happy. She runs squealing to the couch to calm herself with her favorite comfort, her bottle.

I hear Adeline in the back. I walk down the hall wondering how she is going to bolt out of that room. Adeline is either the happiest little human or a raging little tornado. I open the door. This morning, she is smiling. She walks down the hall scripting Wonder Pets. When she sees her sister has a bottle she starts. She comes up yanking my hand, but she can’t think straight on where to take me so she drops to the ground and starts kicking me, hard. I have to think every time what of the million things it could possibly be to set her off. I am usually pretty good at knowing. I grab her a bottle as well and begin to fill it. When I hand it to her she is happy again. I load up their backpacks for the day.

I have to wait 5 minutes before I know the bus will be there to dress them. They do not understand the concept of wait and if they are dressed and the bus is not there it will result in an instant meltdown that has the potential to throw off their entire day.

7:45. I dress Adeline. Adeline does not know how to dress herself so I dress her. She is just figuring out to give me an arm and a leg for me to put the clothes on. I go to brush her hair which is a sensory nightmare to her. I have become skilled at my ninja like reflexes to brush her beautiful long blonde hair.

7:50. I put Adeline on the bus to her Autistic Support Preschool through the IU. I kiss her and tell her I love her as she continues to look out the window.

8:00. I dress Benelli. Benelli is getting better at helping me dress her. She tries her best, but usually stuff is in the wrong hole and she gets frustrated, so I help guide her.

8:10. I put Benelli in her van to go to her Autistic Support Preschool at Easter Seals. I kiss her and tell her I love her. Sometimes, she will say, “I luuuub yyyyoou”. Sometimes, she happily waves her head back and forth squealing, excited to start her day.

I go inside and wake Gunner. At least one of my kids likes to sleep. I dress him for his day, which is usually about the equivalent to wrestling a slippery alligator. He thinks this is funny. I grab all of our things and we go to the van. I take Gunner to our neighbor’s house who babysits him. I drop him off and every single time I leave I think how grateful I am to have someone I know watching him who accepts him for his learning differences and his limited speech.

I go to work.

Work is my place of mediation. Although, I rarely have the ability to go, between doctor’s appointments & meetings, the random few hours a week I get to are my recharge.

*Ring, Ring*

Doctor’s office

Work.

*Ring, Ring*

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Work.

*Ring, Ring*

Speech Therapist

Work.

*Ring, Ring*

Teacher

Work.

…and just like that it is time to leave. I have a meeting to attend at school. Sometimes I feel like I have spent my entire Motherhood in a meeting.

Meetings. They always last so long. I have some of the most amazing staff for my children. I have been very blessed in that sense. The majority of the time though, I am overly exhausted. So, after about an hour I have to try really hard to pay attention. Honestly, most of the time I begin zoning out and I feel like Charlie Brown listening to his teacher. I sit in these meetings knowing I probably look like I staring lifelessly at everyone. I wonder if they know I try so hard for my children. I wonder if they know I am not trying to look uncaring, my brain is just friend. I hope they know I spend every waking second of my life trying to improve their lives and that if I tune out during a meeting, it is not intentional by any means.

The meeting is over.

I head home to make sure I get Gunner in time so that we can be home to get the girls’ off their buses.

Gunner greets me with a big smile.

Smiles keep me going.

We get home to get the girls off their buses at 3:20 pm.

Benelli says, “muuuulk”. So, again I get her a bottle and give her milk.

Gunner starts yelling at hitting my leg. I try asking him what he wanted, but his day most have been tiring so the words are missing the connection. I ask him if he wants milk & he continues hitting me, yelling. I give him a bottle and he happily runs to the living room.

Adeline gets home. This is one of the tough parts of my days. The majority of the time she comes home in a complete meltdown rage.

I take her out of her car seat and she runs into the house…. screaming. She is on the ground screaming & I try offering her any of her comfort items, but nothing is working. She flops around the house following me, using me as her punching bag, kicking. This can go on for 10 minutes to an hour. Finally, she calms enough to take the bottle and runs to her tent bed to calm herself more. The next two hours I walk on eggshells with her. School takes everything out of her and she can not cope.

Benelli, “eeeeaaaaat”.

I start cooking, mac n’ cheese.

Gunner comes up to me.. “I C” which means fruit snack. I have no clue where he got the I C from, but every time I give him a snack I reiterate “snack”.

I realize it’s been 10 minutes since I have last seen Benelli. I panic and wonder if I made sure to double lock all the doors. Making sure everything in the house is locked & double locked with 2 elopers is crucial. Yes, I did. So, I begin searching the house. I open the bathroom. I forgot to shut off the water under the sink, so Benelli has once again flooded out the bathroom, as well as smear toothpaste all over the walls, and poop. I close my eyes. I breathe.

“Benelli, go play.”

I clean up the bathroom.

She will try to sneak in to do this another 10 times tonight.

Mac n Cheese is ready.

“Benelli, Adeline Gunner.. EAT”

They all run to the table. Benelli eats with a spoon, Gunner is hit or miss, but Adeline will only eat with her fingers. Gunner eats 2 bites and runs away to the living room. Benelli begins making cheese art on my sliding glass door next to her seat. “Benelli, eat”. She wiggles around in her seat squealing, happily. We have to remind her at least 20 times during dinner to please sit. She is always on the move. Adeline takes the longest to eat. She eats one noodle at a time. Benelli tells me “All Done”. She gets up to go play. Adeline then quietly gets up to go play.

My husband gets home around this time and we eat our own dinner while getting up a few dozen times to pull the kids off the entertainment center, a dresser, or a table. Our meals are cold before we finish.

After dinner is my favorite part of the day. I read books with Gunner & just sit. The girls do not like us to join them in play so we sit with them and when they want our affection or a touch they come to us and sit in our lap or grab our face. There are only words spoken by my husband and I, but we have a non verbal language with the kids that we all know. Adeline prompts me to sing by grabbing my mouth. Benelli places my hand on her back for a back rub. Gunner comes and relaxes his little body in my lap for snuggles. It makes the hardships of the day worth it.

7:45. Bath time. All three kids go into the tub and it is sensory water play wonderland. There is water covering the walls and the ceiling, and of course myself, by the time we are finished. After I dry them all off and send them out of the bathroom, I spend 10 minutes drying the walls and floors.

I make their bottles for bed. Benelli gets concoction of Melatonin and milk. Adeline gets a concoction of Melatonin, Miralax, and milk. Gunner just gets milk.

“Give Daddy a kiss”. Finally, after 5 years everyone in the past month runs to Daddy and kisses him. It took so much work. Years of this every single night and finally they all do it. It is moments like this that we feel immense joy from all the hard work. While the other two are silent for this, Benelli says, “Daddy, I LUUUB YOUUU”.

They all grab their bottles and run to their rooms.

I kiss Gunner good night, tuck him in, and close the door.

I go to the girls’ room. I kiss them goodnight, tuck them in, close the door, and sit on the floor in the darkness. As my eyes close due to the sheer weight, I have to tell Benelli a few dozen times to “Go to bed”, and she hops back in. I sit there with my eyes closed, mentally and physically drained. My body hurts. My soul is tired. Every day I wonder how I got through it all. Every day I pray for a little more independence in my kids so I do not have to do every single thing for them. Every day I feel like I cannot do it again, there’s no way, my body is going to give out. But every night as my eyes are closed, I sit there smiling, because I know that I did my best and those three little souls who take up every ounce of my heart are depending on me.

I go to bed & I pray for a full night’s sleep. I pray that I have a better day tomorrow.

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What’s Qoming On at Bucks County?

by Michael Murphy

Thanks to some dedicated staff and several generous community technology grants, Easter Seals in Bucks County has been able to install Qomo boards in each classroom. A Qomo board is an exciting interactive whiteboard with an outstanding variety of applications in today’s classroom. Since the boards were installed in the fall of 2015, each classroom at the Margaret “Judge” Brooks Center in Levittown, PA has worked to utilize the technology as best as we can. Our teachers have used the boards in new and diverse ways, as the populations and purposes of our students can be very unique. We use the boards in routine activities, like circle and calendar times, while also testing its limits and challenging the limits of our students in more academic and focused activities. The entire staff has challenged their tech skills at one time or another in order to best utilize these tools, even going so far as to plan gatherings among staff to share and troubleshoot new ideas or problems. The initiative of the staff shows a promising dedication to best serving our clients in all facets of learning.

Often children are said to have too much screen time at young ages, however as educators we know that any experience can be turned into a learning adventure if students are taught to utilize tools in the best ways. At home my children can unlock my cell phone, find (and delete) applications and, of course, exit out of anything they do not like. At the earliest of ages students are learning to solve simple problems. When applied to our Qomo boards, we have instant engagement from our students and are able to watch them solve simple problems, accomplish tasks and apply technology to learning activities. Whether the required tasks are simple or complex we try to address a variety of goals.

As the Friendship Academy teacher at Bucks we can have a challenging group of 3-5 year old students of a wide range of physical, cognitive and emotional abilities. We use the Qomo to encourage students to follow the class expectations if they want the next turn. You’ve never seen such perfect demonstrations of Criss Cross Applesauce. We achieve physical goals at times by having students use a non-preferred arm, reaching high or low, or even just standing with minimal support for a period of time. We get students to patiently wait their turns, while still engaged in conversation and thoughtful discussion. They wait. They try. They learn. They succeed. One by one the children get more and more excited for their turn, turning an average attention span of a few minutes into an extended, sometimes twenty minute activity where everyone gets a turn to show what they know.

The activity was something simple, dragging shapes to a matching space on a tangram. No curveballs here, just your basic shapes. When the shapes were all added to the tangram, the picture came to life. A duck, a turtle, a horse… nothing spectacular. Students came up one by one and added a piece of their choice by dragging their finger across the board, or requesting to use the “Magic Wand” (a simple stylus that doubles as a light saber). The students who are sitting on the rug are encouraged to make predictions about what piece will be chosen, what the picture will turn into or counting the number of other shapes left on the board. When the student picks their shape their friends clapped or gave thumbs up and watched as another student came up to do the same. At the end the students confirmed their predictions, laughed at the animation and calmed themselves back down to be ready for the next tangram. Not an earth shattering lesson, but in an inclusive classroom it truly included everybody. We worked together to achieve a common goal. Students felt confident enough to share their ideas, predictions and encouragement for their peers. At the board, students were able to make a simple choice, under considerable pressure in front of their peers and sometimes explained or defended their choice. Every student walked away with positive praise from teachers, students and staff and a new approach to their ability in the classroom.

Through these exercises we are practicing patience, sharing, cooperation, and determination. These are some of the most difficult lessons to teach young children. While the Qomo board is so much more in each classroom depending on its usage, at its most basic level it is an automatic motivator that achieves whatever goals the teacher wants to address. With a focus on individualized education, there is no better way to teach and assess students of such varied ages and abilities than I have seen when that board turns on and I start my lesson.