Tag Archives: Easter Seals of Southeastern Pennsylvania

Last Day in Australia

by Sandy Masayko

This is the final post from Australia and Sandy’s exploration and sharing of assistive technology

1332 stairs! That’s how many stairs my son and I climbed today on the Harbour Bridge Climb. It was a wonderful way to end my study tour in Australia: I now have the broad view of Australian services for people with disabilities! I treasure my many new acquaintances and I’ve seen a wide range of programs that have made me think about how we can adapt some of our programs in Pennsylvania.

  • Thank you to the National Office of Easterseals for selecting me for the study tour.
  • Thank you to Easterseals of SEPA for supporting my trip.
  • And thanks most of all to the hosts during my trip: Northcott, Rocky Bay and Ability Centre, affiliates of Ability First Australia.
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Special thanks to Northcott for the gift of the Bridge Climb passes.

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The Harbour Bridge is 134 meters (440 feet) high. We climbed through intermittent rain today for beautiful views of Sydney.

Sandy has shared her journey through a series of blog posts. You can read the first one here, the second here, the third here, the fourth here, the fifth here, the sixth here, the seventh here, the eighth here, the ninth here and the tenth here.

Making Connections and Forming Bonds

by Jeanine Johnson

It has now been a little over a year since I joined the Easter Seals family. I can say that I feel sufficiently settled-in. Due to the nature of my position as Data Secretary, I often get to know names of individuals before having the opportunity to meet them in person. It has been a great experience getting to know both students and staff.

It still amazes me that the excitement I felt about making an initial connection with one of the students named Max has not waned in the least. It started out with kisses and now has expanded to cats! He fell in love with my mug that had a picture of my cat named Teacup on it. I made a copy of the picture for him. This new found love of cats has made its way into his home life as his parents report that “he is really liking cats now.”   The best part of the last year has been the multiplication of connections and bonds I have had the opportunity to make. I now have many little friends! To one named Mung, I am known as Wonder Woman and because of that I dressed-up as the character for the Fall Festival. Another, Jaylen, stops by every day and gives me a hug before boarding the bus to go home. Others I visit during the day to receive my daily smiles and conversations. I get to witness first hand their progress and growth and it is nothing short of spectacular! The programs here tap into each child’s potential and make it reality. These interactions recharge my batteries and I’m able to be a more productive employee because of their enrichment. It is such a symbiotic environment.

I had spent over 20+ years in the banking industry and I can truly say that I have never felt as fulfilled as I feel here. Easter Seals is good for education and good for the soul.

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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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Sharing Assistive Technology Ideas in Australia

by Sandy Masayko, Director of Assistive Technology at Easter Seals of SE PA

During my recent trip to Australia, I was delighted to meet with therapists who are providing Assistive Technology (AT) and Augmentative /Alternative Communication (AAC) services in Melbourne.  On September 1, Anne Williams, of the Occupational Therapy Department at Swinburne University of Technology, arranged for me to meet with occupational therapists and speech/language pathologists from ComTEC. ComTEC is a division of Yooralla, a provider of services for people with disabilities in Melbourne.  As we talked, we discovered that share many similar concerns in providing AT and AAC services and devices, including funding, planning instruction and problem solving with families and caregivers.  Anne also invited faculty members from Swinburne in the areas of Occupational Therapy, Robotics and Biomedical Engineering to learn about the work we are doing in eye gaze technology with young children.

The following day, September 2, I made a short presentation to occupational therapists at the Vic-Tas (Victoria and Tasmania) Regional Conference of Occupational Therapy in Melbourne.  The paper, focusing on factors related to use of eye gaze technology with young children, was well received.  Attendees asked many questions.  I was very interested to learn about issues being addressed by occupational therapists in Australia.  The emphasis in many presentations was on self-reflective practice, engaging consumers and promoting participation for people with disabilities.

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Pictured in the photo, Anne Williams on the left and  Sandy Masayko on the right at the Vic-Tas Regional Conference of Occupational Therapy in Melbourne.

Six Super Rules

by Michael Murphy

At Friendship Academy in Bucks County, following the rules is not as hard as you’d think. While the children all learn differently, we have really had the benefit on controlling behaviors following six simple rules. The rules are not a list of ‘Don’t’ and ‘No’, which can intimidate and often do not help students behave any better, nor are they loosely described by any means. Our six rules are very closely tied to our classroom expectations as labeled through our PBIS initiative (Positive Behavior Interventions and Supports). Our six rules are:

Hands Help

Hearts Care

Ears Listen

Feet Wait

Eyes Watch

Be a Friend

The nice thing about these rules, best utilized during times of instruction (circle, story, activity\craft instruction, etc.), is that they describe aspects of the individual child that can be controlled with self-regulation and practice. Instead of telling students what not to do, and providing examples of how they can (poorly) behave to receive some additional attention, the rules simply act as reminders of what their bodies are capable of and how they can best use their bodies to their advantage.

What has made our rules all the better is tying them, in part, to a superhero theme. Thinking of the different aspects that make superheroes special, yet still require them to work in teams to solve problems, helps to create some additional hints towards working together with our peers, finding individual strengths and using new ideas for the greater good. Many preschool and early learning programs use a similar “Be A Superfriend” strategy that helps to recognize the everyday superstars that our children can be, through simple, kind and intentional acts in daily interaction.

Recently Edwin Gonzalez, Friendship Academy’s artistic Teaching Assistant, has created an exciting set of pictures and classroom reminders that help students focus on their expectations. The pictures show diversity, from Wonder Woman’s watching eyes to The Incredible Hulk’s waiting feet to Iron Man’s mechanical caring heart. They are bright and colorful, much like the students we teach. The pictures speak to all types of children, whether they like the hero or just the picture itself. The pictures grab their attention just enough for the teacher to direct it to the lesson. The pictures are unique and even the process of putting them together drew attention from the students as they watched Edwin plan, draw, color, laminate and post. You could tell that they already felt a little super about each addition to the series.

In addition to our Superfriends, there is much to be said about the everyday unsung heroes, the Teacher’s Assistants, the Bus Aides, the therapists, nursing staff, individual support staff, those that cook, clean, file or place calls. We are all part of a team of heroes. When we focus on what we are able to control, our body and our attitude, we can think more positively about the effects our actions have on our team, and more so, how we can contribute to make a team stronger. A team is only as strong as the weakest link, and if your weakest link is the Incredible Hulk, you are in pretty good shape.

 

A Simple Solution

by Kathryn Wallace

I am a Physical Therapist in Bucks County and I wanted to share a quick tip when working with children in their walkers in their home environment. Some of the children with whom I work require maximal assistance when walking. Recently I was working with Paige,  a graduate of Easter Seals in her home environment.

In this session, I was cueing Paige to take steps and mom was holding toys to keep her head up. The toys motivate her to walk forward. Mom mentioned that when there isn’t a second person she is not sure how to motivate Paige to walk. Together we came up with the idea pictured below. We mounted the iPad on the IV pole and used a broom to move the pole as Paige walks forward.

Music Makes it Work

by Michael Murphy

Dan walks in right on time, but circle has run long at Friendship Academy. Dan doesn’t mind, he readies himself for his session. The children watch him as he does, waiting to get to say hello, waiting for their turn to find their spot on the carpet for music. As we wrap up our circle routine, a couple songs to go, the children look back at me and continue. With each song, Dan starts to play along, strumming in the background. We tend to make up songs, but that doesn’t slow him down. Dan goes along and adds another experience to our circle. He is in no rush, but increases the pace along with my song. Each child hears their name, jumps up from their chair and hurries to their carpet square for music. Dan praises their walking feet, greets them and listens to their quick stories about their day or comments on a new Paw Patrol shirt.

Music therapy adds something special to our classrooms. We all sing songs to our students, it serves an educational purpose and provides functional language, but there is something different about Music Therapy. The students are always excited to see Dan, they’re ready to sing the moment he walks in. Our quietest kids jump into “Hail Hail the Gang’s all here,” One of Dan’s welcome songs. Students call out their requests, and Dan finds a way to redirect or work in a new song or two. A towering teacher, Dan spends time on his feet, at eye level with the kids or works to control the gaze of students, willing to do what it takes to maintain that attention and push children to another level of focus. One thing at a time, Dan has all the time in the world to spend with each student until they give him something special for that day; a smile, a word, a sentence… Dan asks for a lot, but gets exactly what he needs before he continues.

We’ve seen shy kids open up, quiet kids yell, “busy” kids slow down and reluctant kids jump in. They throw curveballs at Dan and he throws them right back. “Z,Y,X,W…” Dan starts “his” ABCs. The children shout “NO!”, stopping his song. “That’s not how it goes” says a student who months before spoke in only grunts and groans. Commanding the attention and participation of a big concert of adults is cool, but there cannot be anything more difficult than getting a group of children to listen to your every word, chord or cue. Dan does it.

The exciting part about Music Therapy is that the same song is never really “the same song”. Either Dan plays it different, the children sing it differently, maybe the support staff adds a little something extra. It depends on the day, the weather, what the kids had for breakfast. Each session is exciting and each session ends too soon.

“Music time is over,” begins. Heads hang low, students sing along. Snack comes next, but they wont find solace in their Goldfish and fruit snacks. Dan’s time has ended, they have to wait a whole half hour to hear Dan’s songs blare in another classroom. Different again, effective again. They shout goodbye to Dan, they thank him. If only they knew how to ask for an encore, they would never let him leave. Music Therapy works and it is awesome to watch.