Tag Archives: autism

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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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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Meet Lila and Emma

by Melanie O’Brien

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Lila and Emma are 4-year-old twins whose personalities are as different as night and day. What they do have in common, aside from being adorable, is autism. In addition to autism, they each have unique needs and challenges. Lila, whose needs are more physical, began receiving services when she was about 3-months-old. Her therapists noticed that Emma, whose needs are more medical, might benefit from Early Intervention services for some feeding issues she was having. When it was time for the girls to transition to center-based services, a therapist recommended Easter Seals. Lila and Emma began attending the Early Intervention Center last year. Since they have started, Lila went from not talking, to stringing three words together very quickly. Emma is now starting to use some words. Both girls were given communication devices, that with such amazing progress, they have almost outgrown. Their cognitive skills are really growing and Lila and Emma are becoming quite social! When they aren’t busy wowing their parents, teachers and therapists with their progress, they are busying doing the things all 4-year-olds love. Together, they watch favorite shows, which include Bubble Guppies and Daniel Tiger and enjoying their favorite snack, Goldfish. Emma is big fan of technology. She loves to dance, especially in a twirly skirt. Emma may be Minnie Mouse’s biggest fan. Her wonderful sense of humor and love of laughter means you will often find her with a smile. Lila loves to read, Mickey Mouse is a favorite subject. She is a very affectionate little girl who loves to learn. Her quiet demeanor allows her to happily soak in the world around her. Emma and Lila are beautiful examples of how two girls can look similar, but be so uniquely beautiful.

Join Lila and Emma and all of the Honorary Ambassadors on June 4th at the zoo for our Walk With Me event!

Meet Shane

Only eleven days until Walk With Me! Have you signed up yet? Do you know who you are walking for? If not, you can register here and learn who your ambassador will be. It might just be Shane.

Meet Shane…

shane

Shane has some serious style, right down to his amazing smile. Shane is a sweet , affectionate, 4-year-old boy with autism. When it was time for him to start center-based services, it was recommended that his parents consider Easter Seals. As soon as they visited, they knew it was the right place. Since Shane has been attending the Early Intervention Program, he has gained more words…he especially loves to sing, and is much better at following directions. When he isn’t in school, you can find him holding his baby brother, Ashai. He also loves watching movies, especially Frozen and Rio! And his all time favorite thing in the world? Cars! Toy cars, real cars, Shane loves cars. And also, just like most kids, he loves to eat, and his favorite food group is candy! All eyes are on Shane, not just because he is so cute, but also because we are excited to see what he will do next!

Perspectives from a Student Teacher

by Elizabeth Anzevino

As a double elementary and special education major at Saint Joseph’s University, I had already experienced seven weeks student teaching in a Kindergarten classroom. I conducted lessons, created assessments, and practiced behavior management techniques. But I knew student teaching at Easter Seals would be an entirely different experience. I did have a background in working with students with Autism and developmental delays from my job as a substitute teacher back home in New Jersey, but I wasn’t exactly sure what to expect on my first day here back in March. But between then and now, as my time as a student teacher is finished, I learned more than I ever could have imagined from my cooperating teacher Megan Guthrie, the staff, and most importantly the students of the Bear Cubs classroom that I got to spend every day with.

After that first day I quickly understood the team effort that went into teaching this group of preschoolers. The coordination and planning between Megan, her assistant Robin, and all of the therapists that came through the door that day amazed me. I always knew that these team members worked together in order to carry out goals of an IEP and to manage a class, but I had no idea how dedicated and involved everyone truly was. As I took more of an observing role the first week or so, I quickly became integrated into the every day activities of the classroom, and I learned that a great deal of planning, structure, and attention to detail had to be given in order to get through the day as smoothly as possible, and in order for the kids to gain as much out of the day as they were able.

Throughout the seven weeks that I was a part of the Bear Cubs I learned more and more about each of the individual students, and it helped me as a teacher. Megan gave me the responsibility to take over circle time as well as whole and small group lessons, and I facilitated transitions from one activity to the next. With my lesson planning I truly got to implement what I had been learning about differentiation for the last four years; and I also saw how challenging it could be. Although I did a lot on my own I truly learned that talking to other teachers and therapists helped with making accommodations and modifications for each of my students. I learned firsthand how the IEP process worked, took and interpreted data on functional routines within our class, and I even got to conduct assessments using the Star Program. Megan and I made many changes to our classroom throughout my time at Easter Seals and it taught me that things will always be ever changing, and as a teacher I will need to be flexible. As much planning as we do, there are always things that pop up unexpectedly that we as teachers are responsible for handling, and in the end it makes us better educators.

The experience I received from Easter Seals is one that I will keep with me always. The environment there is so positive and energetic and made me love going each and every day. Now that student teaching is over and graduation is approaching, I truly miss every second of it, and it makes the time I spent there that much more special. As I start graduate school, I know that Easter Seals has taught me so much I will be able to take with me. I feel more than prepared for my future career because not only did I learn and observe while I was there, but I did it. I was the teacher. I will be forever grateful to Easter Seals and am so happy that I was placed there.

Making Sense of How Sensory Processing Difficulties are Addressed in the Early Intervention System

by Anna Lassman

Sensory Processing and Sensory Integration are hot topics these days, particularly with children who have been identified as being on the autistic spectrum. Sensory issues can also affect kids with motor impairments. Families are often faced with many new and sometimes confusing concepts and terms. I hope to clarify some of the confusion.

Our senses play a big role in how we learn, interpret, adapt and cope within our environment. We take in all the information through our senses into our brain. Sensory Integration is the process by which we take information through our senses. The brain then processes that information and helps us determine how to respond. The responses are behavioral reactions that take the form of learning, inhibition, coping, and adapting. Sensory Processing is simply another term for Sensory Integration.

Our brain acts as a processing plant, finding what is important to pay attention to, what is something we need to ignore, and then planning how we respond. In an educational setting the goal is for kids to be calm, alert, focused, so that they can attend, refine their functional skills and learn.

Other terms relating to sensory processing include: tactile (perception of touch); proprioception (“sense of self” understanding how your body is positioned in space); vestibular (perception of movement in space).

Children with sensory processing difficulties seem to have perceived the information in a different way, and / or the inability to make sense of it. They are unable to adapt their response or have limited coping mechanisms Often the result is to underreact or overreact. For example, a child who has a hard time in a busy, noisy store may either hide, or begin to tantrum. They are unable to filter through the stimulation they are being exposed to. Often they either have a delayed or slow reaction and because of this low reactivity, they may “shut down” or avoid. In other cases, they may have an extreme reaction because of hyper sensitivity.

The most common approaches are described below:

Sensory Integration Treatment Approach – is individual OT treatment that involves a specialized setting with suspension equipment. The program is designed to improve the efficiency of the nervous system in how the use of the sensory system is interpreted for functional use through a child centered approach. The evaluation process requires a Sensory Integration certified therapist to administer.

Neurodevelopmental intervention (NDT)- is an ever evolving approach to enhancing overall motor function of individuals who have difficulty controlling their movement as a result of central nervous system deficits. This theory, as most others do, has evolved as our understanding of the brain and how motor learning works evolves. The focus is on improving motor control and motor output to improve functional skills.

Many children with motor impairments (such as cerebral palsy) do not have the opportunity to learn about themselves and their world through movement. They may develop atypical patterns of movement against gravity, and don’t get to experience body exploration, tactile, proprioceptive and vestibular inputs the way typically developing children do. A good understanding of how our bodies work to move in different ways are important for effective motor planning and use of both sides of our body in a cooperative way. These are important for learning new skills for both the gross motor and fine motor areas, as well as for functional tasks (for example: self-care areas).

Both neurodevelopmental treatment and sensory integration rely heavily on the use of tactile, vestibular and proprioceptive stimulation in accomplishing their specific goals. In the educational model, the approach most often utilized is a sensorimotor approach in both direct services as well as in consultation with class team and family.

Sensorimotor– refers to a broad spectrum of both sensory and motor difficulties, combining both sensory integrative theory and neurodevelopmental theories.

Occupational Therapists tend to have different focus of therapy depending on what model of service they are working in. A model of service helps guide the OT in developing goals and plan for therapy. As Sensory Integration intervention requires special certification for the evaluation process, and a specialized clinic, it is considered a medical model of service. The medical model focuses on rehabilitation or remediation in a clinic (private office, hospital, outpatient center) setting. The focus in an educational model of service is educational access/ adaptation/ compensatory strategies for greater success for learning needs within their educational setting.

In the book Autism, a Sensorimotor Approach to Management, consultative model is defined as: “helping the family understand their child’s behaviors and how it relates to sensory processing; helping the teacher and the family modify the environment so that it matches the child’s sensory needs; helping the child organize responses to sensory input”.

So what does sensorimotor therapy in an early intervention educational model look like? It may differ if the child is seen in a center based special education setting or a community based pre-school, head start or early learning center or daycare. Most Early Intervention center based programs have access to a room with some suspension equipment which gives the opportunity to explore more sensory integrative and neurodevelopmental strategies during direct service.

Out in the community, therapy can be limited by whatever equipment the therapist can carry as it relates to sensorimotor strategies; and if he/she has the room to use more motor based activities. These factors will usually drive the session. More often the role of the therapist in the community is consultative; helping to find toys, equipment/, and movement activities that can be incorporated into the daily class routine to help the child improve his/her attention and task focus so they can get the most out of their learning experience. The consultation is ongoing and meets the child’s ever changing needs. Often the therapist will leave a number of sensorimotor activity ideas with the class team for options for arousal or calming to maximize task focus and learning.

Acknowledgements:

Dr. A. Jean Ayres – researcher and founder of Sensory Integration Theory

Winnie Dunn, PhD, OTR, FAOTA- researcher in the area of sensory processing and creator of the Sensory Profile Questionnaire

Ruth A. Huebner, PhD, OTR- editor of Autism, a Sensorimotor Approach to Management

Colleen Schneck, ScD, OTR/l, FAOTA – contributor to Autism, a Sensorimotor Approach to Management

Anna Lassman has been an OT for 35 years, working in a variety of pediatric settings in New York, California and, for the past 18 yrs, in Pennsylvania. She has been with Easter Seals in the Philadelphia Division as the OT department head for 7 years. She has special interests working with infants and young children with feeding difficulties as well as working with children with neurological impairment. Her favorite aspect of her current job is the ability to mentor new practicing OT’s as they begin their career in the field. Anna loves the ocean and misses easy beach access, but loves the Philadelphia area.

Meet Reggie

by Melanie O’Brien

Walk With Me is our biggest event, yet our Honorary Ambassadors and their families, and everyone who comes out to support them, make it the most personal. Walk With Me is an amazing day at the Philadelphia Zoo that has impact that lasts all year long.

One of our ambassadors this year is Reggie. He is a shining example of how when you combine the expertise and passion and Easter Seals staff and an amazing family, a child can really shine!

Meet Reggie….

Reggie has a laugh so great that just hearing it will make you smile. And lucky for us, this sweet five-year-old loves to laugh! So much so, that he will actually put your hands in his favorite tickle spots. Reggie has autism, which can make communication a challenge, but when it comes to what he wants, he knows how to make it happen. Reggie has been attending Easter Seals autistic support class since he was three. Since then he has become much more social, learned to dress himself and has gone from the boy who avoided touching things to just plain unstoppable! When he isn’t wowing teachers and therapists at Easter Seals with his progress and ever-happy personality you can find him doing some of his favorite things. He loves visiting as many parks with his mom as possible and taking a spin on his awesome big wheel with his dad. Reggie loves to be outside! But when he is home, there is nothing better than pizza and singing and dancing along with Mickey!

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Reggie in his classroom