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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*

BSC

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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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.

 

More than you think

by Michael Murphy

It is easy to say that kids will be kids. Easy to think that their silly actions are a step to growing up, a phase they will outgrow, or a gasp for attention. As the Friendship Academy teacher at Easter Seals’ Bucks County Division, I see a variety of behaviors and work alongside with numerous professionals to decipher what the children, some able to communicate and others who struggle, are trying to say. Each action is a message, a question, or a statement and all the adults have to do is listen. Imagine that, adults not using their listening ears!

When we ask a student to clean up the floor, they don’t know what that means. A nephew of mine was told to clean up the floor at home, and he actually picked up every single toy… and put it on a higher surface. The floor was clean… the table, tv stand, bookshelf and couch were not. However, he cleaned up the floor and actually showed an impressive ability to follow directions. As adults, we have to think about how we explain our directions. Children throwing toys during clean up time or continuing to play could communicate that they are unsure of what “clean up” can mean. Instead, at Friendship Academy, we give shorter instructions;

Now David, you’re not doing that right, you’ll be in trouble unless you clean up all your toys”

becomes “Put in bin, David.”

Think about a boss giving you directions as an adult. How long does it take for you to tune them out? Children are saying more than you think by not cleaning up.

Kids like to move! They jump off couches, run into walls and just won’t stay still. They are trying to tell you something, just listen! I like to think that I get a lot out of my kids when they’re at our circle time. Sometimes I can get up to 15 preschoolers of varying abilities sitting for up to 30 minutes, and its not by having them all sit still and quiet while I do the lesson that I wanted to do. I make THEM the lesson! Their ideas, their questions, their movements. I give opportunities to get loud, to move around and to be silly, and after that they are ready to listen. We assigned a portion of the room as the jumping corner, and that is not to punish the child who wants to jump and send them away, but it is a way to provide these much needed opportunities to students to help them wake up and refocus.

Again think about a long day at work, staring at the screens or dealing with customers over and over… sometimes you need to step away and shake it off. A child’s wiggles, jumps, claps… its not to ruin your day. It is saying more than you think. It is asking you to give them something to do to help them refocus.

No David stop doing that right now, I need you to sit.”

becomes “Lets jump (wiggle, clap…) ten times and then try this again.”

And yes, I’m that parent running up and down the aisles at Target because, frankly, I don’t like clothes shopping either.

Kids hit! They may do so out of internal frustration, external frustration, or just to get you to listen to them. My son gave my a shove to my chest today while I was checking my text messages, and I was about to get very upset until I realized that, from time to time, I’ll give him a pat on the shoulder when I know he is too into Fruit Ninja or Netflix. Kids learn more than you’d think from just watching us in action as adults. At their most extreme, students need to learn how to deal with their frustrations, but children don’t always hit out of anger, usually just out of frustration for not knowing or possessing the best words to use to solve their problems. At Friendship Academy, long before any kind of threat or punishment, we share some words to use. “Are you angry?” “Do you need help?” “Would you like to do something new?” These are all phrases we use when we observe an event getting ready to boil over. They are openers to allow students to begin a larger conversation and to help increase their available language. Sometimes we just have to provide some of the attention that that child is seeking. Children are well aware that their physical aggression will bring more attention than saying “Excuse me.” until they have their time to speak.

I cannot speak for every child, but I have seen students of varied cognitive and physical abilities respond well to shortened instructions, a respectful tone, an opportunity to do something THEY enjoy, and a simple opener to have their own time to talk. Children will grow to exceed your expectations, however high you hold them, they will do more than you think they ever could. The best way to get them to reach higher and higher is not to tell them what NOT to do, but to provide them with guidance towards what they should do. And always praise, even for failed attempts because when you try hard at your job, don’t you want some recognition too?

 

Ambassador Update – Dominique

Dominique was an ambassador for Walk With Me in 2013 and has been keeping busy since then! Her mom shares what she has been up to…

Dominique continues to be the happiest, hardest working person I know. Her persistence and determination has helped her expand her vocabulary through the use of her iPad. With this advancement in communication, we have learned a lot about Dominique and her adorable, funny personality. We have learned that Dominique loves the Frog Song. But only the version she learned from Miss Jennifer’s class while she was at Easter Seals. She also enjoys dancing and listening to “Shake It Off” by Taylor Swift. She has also made it quite clear that she does not like moms out of tune version. In her spare time she lets us know that she would like to stop at the Starbucks for a Vanilla Bean Frappuccino and check out the toy department at Target which she refers to as the “Target Playground.” She has also taught herself to play the piano. She loves to go on YouTube to find songs and piano tutorials so she can replicate on her piano. Currently, through the help of her piano teacher and therapist, she is working on The Beatles, “I Want to Hold Your Hand.” I just want to hold hers forever.

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My experience presenting to the Easter Seals Board of Directors

by Grace Clements, MT-BC

Helping everyone pick out their instruments

Helping everyone pick out their instruments

I recently had the pleasure of doing a program presentation for the board of trustees at Easter Seals. I began my presentation by bringing a bunch of percussion instruments from my office to the board meeting. Initially, I got a couple of inquisitive looks and some daring board members experimented with some different things. Whenever I am talking to a large group about music therapy I like to begin the presentation with a drum circle. It was around 7pm and I can imagine most people had been working up until this point. To begin the drum circle I usually pick a drum for myself that I am comfortable with, that has a full sound. I play a simple beat for a little while then invite the group to join when they feel like they have something to add. After the group seems to “get in the groove” I begin isolating different parts of the room i.e. “on the count of 4, just the people wearing green!” (this was on st. patricks day), the right side of the room, the left side etc.  Towards the end, i say, “on the count of 4, i want you to play as loud as you can!” then we play as loud as we can and i count down from 5,4,3,2,1 and we stop.

Being a therapist I can’t help assess the group before and after the musical experience.Before I noticed some were hesitant, but some seemed excited.

During the music I noticed lots of laughing and smiling, the music continued to become more cohesive with all the participants playing with each other, and the volume increased as we continued playing, as well as the cohesiveness of the playing.

After the musical experience I noticed a shift in my mood as well, I felt more relaxed and more confident about my presentation. I believe that music has the power to center us.

It was great to get to interact with the board members and share the work that we do at Easter Seals. Sometimes I think we are so busy thinking about how to better serve the students at Easter Seals, that we don’t always get a chance to take a step back and think of all the great work we do here.

At the end of the presentation the board members asked me a few questions such as:

“How do you measure the success of a group?”

I thought this was a great question. I guess an easy answer might be, “i deem a group successful if my goals for said group are met.” When i really think about this question, I realize that sometimes I work in the opposite way. Some days in order to meet the needs of the students I have to take the temperature of the room in order to decide which steps/interventions I will use that day. This reminded me of how Easter Seals has helped me become very flexible!

“How do you plan for a group?”

Because I see about 30 groups a week, I often try to pick interventions that are adaptable for most groups. Sometimes I build an idea around a theme or season, sometimes around something the kids are really interested such as the movie Frozen! I then break things down and think about all my different classes and how they might respond to the music. I can’t always predict what the kids will do, so sometimes I also edit the idea as I use in in sessions.

Thinking about these questions and this presentation really allowed me to reflect on my experience as a music therapist here, and I appreciate that!

Grace is a full-time music therapist at Easter Seals

Santa is (a) Real(tor)

Every year, many of the families at Easter Seals benefit from some amazing generosity. We are fortunate to receive some incredible support from the Delaware Valley Children’s Charities to help children’s Christmas wishes to come true. They are an amazing group of volunteers who work hard throughout the year.

Each year though, for various reasons, which can be a simple case of timing, we have families that are struggling to make Christmas magical. Our amazing team of social workers, teachers and really, everyone, work hard to identify those families in need and a solution. We often turn to our donors for this special request.

This year, we are so grateful for the team at the Long and Foster Team in Audobon! They came together quickly and were able to make Christmas happen for not just one, but six families in need. Wish lists were read and checked off. Gifts were wrapped and marked, not just for a child we serve, but also their siblings.

It is an amazing group of realtors that are turning six houses on Christmas morning into some very happy homes!