PEI ACL FAMILY NETWORK:
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Halloween is a mysterious and magical time for children. It's bursting with imagination, pretend play, and of course candy. However, Halloween can also cause fear and anxiety. If you are the parent of a child with a special need, you know what I mean. You want your child to enjoy Halloween, but you face challenges in keeping them comfortable, happy, and safe. For you, Halloween takes a great deal of planning and ingenuity. Here are some costume ideas to help you get inspired and excited for fright night.
Children With Limited Mobility
Children with crutches, walkers or wheelchairs will need to have Halloween costumes that don't interfere with their ability to move. Costumes should be short enough to avoid being caught in wheels or being tripped over. Get creative and turn your child's wheelchair or crutches into a part of your child's costume. For example, the wheelchair can become a bulldozer with your child as the driver, as pictured, or your child can be a firefighter on top of his walker decorated as the fire truck.
Children With Autism and Sensory Processing Disorders
Children with autism can be extremely sensitive to touch, and clothing seams, tags and certain fabrics can be irritating and uncomfortable, leading to meltdowns and stripping. The fabric used in store-bought Halloween costumes is often stiff and scratchy, and your child may flat out refuse to wear one. Halloween masks present a similar problem, as they are often tight on the head and difficult to see out of and breathe through. Try creating a costume using clothing your child already owns. Sweatpants and sweatshirts are affordable and easy to turn into costumes, such as a cat or a dog.
Children With Feeding Tubes
Easy access is key for parents when it comes to costumes for children with feeding tubes and other medical equipment. Lollapanoplies creates custom Halloween costumes that make it easy to get to any of your child's tubes, whether she has a tracheotomy tube or feeding tube. The owner of the company originally created an owl costume for her daughter with special needs and after receiving great comments, decided to make them available to other families.
LOVE this next point!!
With a little creativity, you can help make Halloween fun for your special needs child. If she doesn't want to wear a costume at all, let her know that it is OK. You can even dress her in a shirt that says "Trick-or-Treater in Training" if she doesn't want to miss out on scoring some candy!
Now that's a costume we can all do!! what a great idea.
Autism Canada also has this great card that may help the trick 'n treatin':
Are you ready? Hallowe'en is this Saturday! Dust off your best costume and start knocking on doors.And for those of you who need a little help, here's a printable card to help you say the words we're all excited to hear: trick or treat! Here's a picture of the card, but click on the link below to download a page of them. Super Idea.
Great job Sesame Street!! what a super video and song about how we are all different and learn in different ways. Really well done. Great article as well, about a new character on Sesame Street named Julia. A new Muppet character who has Autism. They are working towards creating awareness & empathy. Awesome job. ________________________________________________
Fuzzy favorites Grover, Abby and Elmo are joined by their newest muppet pal, Julia, a character with autism, in Sesame Street Workshop's new nationwide initiative.
The initiative, created for communities and families with children ages 2 to 5, includes a free downloadable app that incorporates video, digital story cards designed to make daily life tasks easier for families of children with autism and storybook materials for providers, organizations and caregivers.
"Children with autism are five times more likely to get bullied," senior vice president of U.S. social impact, Dr. Jeanette Betancourt, tells PEOPLE. "And with one in 68 children having autism, that's a lot of bullying. Our goal is to bring forth what all children share in common, not their differences. Children with autism share in the joy of playing and loving and being friends and being part of a group."
Elmo, Julia and Abby
MARYBETH NELSON
Looking to highlight commonalities among children instead of focusing on differences, the app and online videos explain what having autism is like from the perspective of a child with autism.
"This is what makes our project so unique," says Dr. Betancourt. "When we explain from a child's point of view that there are certain behaviors, such as slapping their hands or making noises, to express excitement or unhappiness, it helps younger children to understand how to interact with their autistic peers. It makes children more comfortable and therefor more inclusive."
Directed at families with children with autism as well as the general public,Sesame Street and Autism: See Amazing in All Children hopes to educate parents on best practices for everyday stressful situations such as brushing teeth, going to bed and crossing the street.
New Sesame Street initiative
JESSE GRANT
"Families with autistic children tend to gravitate toward digital content, which is why we created Julia digitally," executive vice president of global impacts and philanthropy, Sherrie Westin, tells PEOPLE. "We want parents and children to understand that autism isn't an uncomfortable topic.
In the storybooks, Julia explains to her Sesame Street friends how she likes to play a little differently from them.
"If you're five years old, and see another kid not making eye contact with you, you may think that child doesn't want to play with you. But that's not the case," says Westin. "We want to create greater awareness and empathy."
Little boy playing with Sesame Street character Abby
JESSE GRANT
Researches worked for three years developing the initiative and hope it will ultimately bring people together.
"Some people don't even know whether they're even supposed to say the word autistic," says Westin. "By opening up a dialogue we are trying to get rid of any discomfort or awkwardness, it's time to increase understanding."
Sesame Street is expanding the initiative through social media using #SeeAmazing online to promote awareness.
"We are trying to spread the story about the theory behind this whole thing – love and acceptance," says Dr. Betencourt. "Everyone is touched by autism, and by creating Julia, Sesame is bringing children together." BY ROSE MINUTAGLIO http://www.people.com/article/sesame-street-introduces-autistic-muppet
Here's a couple of great articles that really let us know that we are not alone, when our kids meltdown at home, or at the grocery store, or trying to walk down the street, or really just about anywhere they want to! Because face it, it totally makes you stop in your tracks, blur your vision to all but what's right in front of you, and has you catch your breath...and then frantically try to come up with some strategies to get you all out of said situation safely, with as much dignity, and calmness as you can. Some of these will resonate with you, and make you realize it's OK..take a breath, both of you, all of you- in the surrounding area. There is always, always, always a reason for it. Afterwards, take the time to think about it, process and bring in extra supports, teach verbal/nonverbal cues ,sensory breaks, and visual schedules that may be needed or helpful. Take it from someone who has been in the middle of many..and survived..it will pass, adjustments made, and made again, check lists made up on the spot, grocery carts left in the isles, walked in a set of doors, saw the look on his face, recognized body language, and an immediate turn and back out doors.... It will work. Seriously, one step at a time. And I totally loved the last lines in the second article, "In short, your patience and persistence will help them prevail. Celebrate those victories and pass them on to another family. There is no greater gift than sharing peace and understanding." We totally 'get it' here..and are a wealth of support to each other. Please ask if you need help, have a question, or better yet, share a success!! -------------------------------------------------------------------------------------------------------------- When I Realized Why My Son Melts Down at Home but Not at School
Tonight my son walked through the door from school, and immediately I knew. He didn’t have to say or do anything. I just knew.
Call it mother’s intuition, or call it years and years of practice, but I knew something was wrong. It was the delayed effect. My son has had a tricky day at school. He has held it together for nearly seven hours. Then he walks through the front door, and bam!
He’s somewhere safe and familiar, and he can’t contain the pressure anymore.
It creeps out of every fiber of his being. His face is tense, and he has red cheeks. His body is stiff and awkward. His words are fast and loud, and he’s agitated. He’s hungry, he’s not hungry. He wants a snack but not what’s in the cupboard. So he gets angry and swears because he’s not in control of his body anymore. He wants to say hello to the dogs, but their overexcitement is too much for him, so he’s too rough with them and he gets cross with himself. I ask him how he’s feeling, and it’s like there is a red fog surrounding him. He can’t process what I’m saying. His sisters walk in chatting and laughing. They sound like a crowd of people to him, and he shouts to them to be quiet. They snap back at him as only sisters do, and wham — the volcano explodes. We have liftoff.
Meltdown. There’s no turning back now. It all has to come out.
Then comes the exhaustion — for him and for me. He can’t reflect on it because it’s all just too much. He just needs to recharge now, as do I. It’s so hard being a mom on the receiving end of the delayed effect because it holds no prisoners, and it doesn’t care who it hurts in the process. So I can’t even begin to imagine how it must feel for my son.
As his mom, I know there would have been telltale signs throughout the day. But they’re small clues that can be easily missed, as he would have been largely compliant, so therefore no one would have realized there was any problem. But I know as the day progressed, his complexion would have become paler as the energy sapped out of him with each passing hour.
He may have struggled to eat his lunch due to high anxiety. A nervous giggle would have squeaked out when his teachers tried to speak to him. He would have put his head down on the table during lessons, or possibly rocked back and forward on his chair to calm himself down. And as the pressure mounted and the clock ticked toward home time, there may have even been some finger picking and sleeve chewing.
My son shows these signs of stress through his body language and gestures. He can’t always communicate his needs verbally, so they can get missed. And to be honest, I don’t think he’s able to recognize this rising pressure himself until it’s too late most of the time.
The delayed effect can be a common challenge facing many children on the autism spectrum. Some children are able to contain their feelings all day at school, with the teacher blissfully unaware there’s a problem. However, the stress hormones are slowly building and building inside these kids. This creates a Jekyll and Hyde sort of situation that can put incredible pressure on families — especially if teachers don’t understand or believe what the parents are telling them. So let’s think about it this way for a minute…
Imagine yourself as a bottle of pop. Your ingredients include autism, sensory processing difficulties, ADHD and a hidden speech and language delay. The world’s a confusing place, and your difficulties are largely hidden to the wider world, so not many people understand things from your perspective.
This is your day:
Going to school is just one big worry for you… so give that bottle a shake!
You get to school and your teacher says, “Let’s start a new topic.” What does that mean? … Give it a shake!
You don’t understand what you have to do… shake it up!
You make a mistake… shake, shake, shake!
The lights in class are buzzing, and it’s annoying… shake it a little more!
It’s assembly. You have to sit still while your insides are wiggling and jiggling around… shake it up!
The timetable changes and it’s not math like it should be, it’s now music… and shake again!
The car gets stuck in traffic, and the wrong radio station is on in the car… that’s a few more shakes!
You get home and the lid blows off with the pressure!
That’s the delayed effect. It’s a real thing… trust me. The times over the years I’ve felt so confused and isolated when teachers have said to me, “Well, that is a surprise. We don’t see any of that here at school.” Or I’ve heard, “Well, he can behave for me, so maybe you’re being too soft on him.” I spent many a sleepless night wondering if it was me. Was it my parenting? But I am his mom, and my gut instinct is always right. I knew there was something my child was struggling with, and all I had to do was understand what his behavior was telling me. My child explodes at home with me because I’m his safe place. I am predictable and calm, and he can really be himself at home. He is fully accepted at home.
So this tells me there are many things that can be done in order to reduce this build-up of stress hormones for children like my son — making them feel more safe and accepted for who they are. And that means really embracing their individual needs. Not just trying to fit a round peg into a square hole.
I don’t care who you are – at some point it’s going to happen to you. I am talking about managing melt downs. Celebrities define their careers with them. However, for parents of special needs children melt downs, or drama, are part of daily life.
Recently, I shared with a friend about our struggles in managing our son’s melt downs. She laughed and said my tips apply to her college age children and husband too. There is always comfort in knowing you are not alone. My husband and I only have seven and a half years experience. However, we have cried, yelled, screamed, laughed and made enough mistakes to qualify for an audition on the reality show, “Super Nanny.” We are no experts but hope to share our experience in order to encourage others.
So here are the seven habits of barely functional parents…..errrrr – I mean seven ways to manage melt downs. It is dedicated to other parents of children with special needs:
1. Plan – set the expectation – plan – repeat – pray:
Early on we did visual schedules, role playing and flash cards to sequence the events of an outing. The iPhone even has apps for this preparation. Now we run through a verbal sequence. It’s not bullet proof but it does set the expectation, and allow you to identify load noises or other sensory road blocks. We do a lot of repeating. We also find it is often a way of “talking our son down” from the edge of melt down. Faith and deep breathing are a big part of this drill.
2. Don’t worry about other people:
I struggle with this one. We live in a small community, which by definition means; you know a lot of people. I can’t tell you how many times my kid was throwing a fit and I felt the eyes of a judging on-looker. It helps deflect the stares with a comment like, “I am open to your ideas. What would you suggest that I do?” I find this one sends them scurrying. It sort of confronts them and forces them to give an answer. Often I have been surprised by comments of compassion and encouragement.
3. Go in with an exit strategy:
My husband and I joke that the invasion of a foreign country requires less planning. We identify our roles; who will take the kid outside and who will remain to pay the check or grab the needed item. It is also important to claim victory when you have not needed to implement the evacuation plan.
4. Check your sanity at the door: (This supports number 3)
If you have a cart of groceries and your spouse or partner is not with you, leave the scene. Your sanity is worth more than enduring an escalating melt down. Remember, kids feed off of your furry. If you start to lose it, the situation will escalate and mutiny is just minutes away.
5. Always have a motivator – but don’t count on it:
We are big advocates for Applied Behavior Analysis (ABA) strategies. In basic terms your child has to demonstrate the appropriate behavior/task to get the reward. Some may call it bribery but there is more to it. It does work but part of your plan is to determine what you will do to get your child to comply when the motivator loses its zeal.
6. When all else fails – rely on humor!
When I think back about some of the things I have done, I have to laugh to myself. I am quite sure I will never earn the “Mother of the Year” award. Recently, I was desperate to get my child off the floor of a store. I was not going to give in. Knowing that my son is deathly afraid of parrots, I pointed to the ceiling and yelled, “Incoming! Incoming! Incoming! The parrot is coming for you!” My son jumped to his feet and yelled, “No Mom! Save me!” An onlooker appeared horrified. I smiled triumphantly and softly said, “Don’t judge me. It worked!”
7. Remember it is a journey not a race:
This last tip is one that another parent gave me when I felt down, beaten and completely defeated: “Every roadblock I’ve faced with our son has taught me something, even if it was very, very small. Those little, tiny pieces of information eventually all come together and it’s possible to see the bigger picture. The hard times can be very, very hard. It’s so hard to see that it will get better, especially when we start to doubt ourselves and wonder what it is we did to be where we are. You have to realize that you were chosen to be your child’s parent for a specific reason. What’ll happen next – you’ll see some HUGE leap that you never expected. You realize that the melt down was just a bump…a blip on the screen, and you’ll wonder why you got so upset about it. You WILL understand it and it’ll all start to make sense. Keep your faith…it’s the only thing that will get you through the really rough patches.”
The most important thing to remember is that melt downs are not about you. They are about your child trying to process what is happening to them. The world they are experiencing is not the same one you are absorbing. Developing coping skills for these special kids takes a lot of time, energy and planning. In short, your patience and persistence will help them prevail. Celebrate those victories and pass them on to another family. There is no greater gift than sharing peace and understanding.
Submitted by: Cynthia and Jim Falardeau – Proud Parents of J. Wyatt Falardeau
Ontario Special Needs Roadmap for School has a great Facebook page, that covers a lot of different special needs struggles, challenges, and some tips to help support. I really like a lot of there visuals, and have posted 3 in particular that have been shared the past week or so. Have a look, and print off what is useful for you. The use of graphic organizers/maps has always been a great resource, and one we have used consistently throughout the years for a variety of topics and needs. This one is specific to Anger, but really helps to facilitate discussions and create a plan.
There is one on Body Safety Rules, and discussing what my body is and rules around being safe, and finally a great one on how to ask questions, that may evoke more conversation with your kids about their day at school. I often use some of these, or ask them to tell me 3 things- 3 good or bad things about the day, and 3 things about their buddies..often leads to a story, that tells you more about what happened during the day, verses the classic " how was your day?" and usually get more than one word responses..
As October is Autism Awareness Month, some of the posts here, will be about Autism. This article has some great points in it, about how to be a friend to a peer who may have Autism. Thanks to Angela Haupt for writing this article, and sharing some great information.
When people meet Andrew Phillips, they cast him off as anxious. Maybe irritable, and certainly disconnected.
Then there are the people who know him well. The people who say he’s funny, sweet and very smart.
“Those are two completely different kids,” says his mom, Leslie Phillips, of the two descriptions. That’s because Andrew, 14, has autistic disorder, the most severe of the autism spectrum disorders – which also include Asperger's syndrome and Pervasive Developmental Disorder. “He struggles with communicating with people in a meaningful way, so to be a friend to Andrew, you have to take the time to get to know him and be around him.”
In late March, the Centers for Disease Control and Prevention released new data that suggests 1 in 68 8-year-olds is now affected by autism, a 30 percent jump since 2012. That means virtually every grade in every elementary school has at least one autistic student – and it’s likely you know one (or more) of them.
Autism affects the way a person’s brain and body work, and someone with the disorder might have trouble speaking, make strange sounds or not talk at all. About 25 percent of people diagnosed with an autism spectrum disorder are considered nonverbal, but they can sometimes communicate by writing, sign language or picture cards. Autistic people may flap their hands, spin in circles, do or say the same things repetitively, or sit quietly and avoid looking at others.
But none of that dampens the fact that they’re intelligent, capable, passionate, honest people. People who, in many cases, deeply value friendship. “It’s so hard for Andrew, but I don’t think there’s anything more important to him than being connected with other people,” says Phillips, who lives in Katy, Texas, with her three sons and does advocacy work for the National Autism Association. “I think if autistic kids could say one thing to people, it would be this: Don’t give up on me.”
As we mark National Autism Awareness Month, consider these ways to be a friend to someone with autism:
Don’t assume he or she doesn’t value friendship. Yes, there are communication challenges and trouble with social interactions. But that doesn’t mean friendship isn’t important. “The reality is that autistic people, like neurotypical people, are very diverse in our levels of sociability and desire for friendships,” says Lydia Brown, a junior at Georgetown University who has autism. Some people with autism are exceedingly social, while others are significantly more introverted. “But like all people, we value others who want to be our friends for the sake of who we are,” Brown says, adding that “we seek friendships based on mutual interest and respect, shared values and negotiated boundaries.”
Be patient. Meet somebody where he is – don’t try to change him so he becomes what you consider acceptable.“You need to be sensitive to the fact that they’re doing the best they can, just as you’re doing the best you can,”says Lisa Goring, vice president of family services at the advocacy group Autism Speaks. “There’s no reason they need to be the only one to change.”
Communicate clearly. Speak at a reasonable pace and volume – and keep in mind that it’s often helpful to use short sentences. Gestures, pictures and facial expressions may also work well. Speak literally rather than using confusing figures of speech, and when you ask a question, don’t expect an immediate response – give your friend extra time.
Make plans. There’s a good chance someone with autism wants to be included but doesn’t know how to ask. A number of formal school programs pair autistic kids with neurotypical buddies, setting up dinner or movie nights. But little or no interaction occurs outside those structured times, Phillips says. “Real friendships are made in the cafeteria at lunch, or in the stands at the softball game, doing normal daily activities.” She says her oldest son, a 19-year-old who has Asperger's, found a few close friends in elementary school. As the years progressed, he always had someone to sit with at lunch and a friend in gym class. “Those are the times when kids who are alone get bullied,” Phillips says. “It’s really important that one or two people – it doesn’t have to be a big group – are spending time with that person on a regular basis.”
Respect sensory differences. People with autism are often unusually sensitive to sounds, sights, touch, taste and smells. High-pitched sounds like fire alarms may be painful; scratchy fabrics intolerable. “A good friend will learn to respect sensory differences, whether or not they understand the reasons or causes for them,” Brown says. “Don’t question or doubt someone’s knowledge of their own body and mental state.” Likewise, don’t assume people with autism are intellectually disabled. Often, they have normal to high IQs and excel in areas such as music and math.
Don’t treat people with autism like a project. This happens often, Brown says, stressing that friendship with an autistic person is not community service. “We don’t need charity or pity friendships,” she says. “And we neither want nor need people who want to ‘look past the autism,’ as autism is integral to our identity and experiences.” Brown suggests this test to determine whether your friendship with an autistic person is a positive, healthy experience, as opposed to a charity project. Do you include the autistic person in events or nights out with your other friends? And are your perceptions of the person based on widespread stereotypes of autism or other disabilities?
Stand up for your autistic friend. Bullying, abuse and other types of violence are prevalent in the lives of autistic people – from childhood through adulthood. If you see someone teasing or picking on an autistic peer, take a stand. “Working to end the systemic ableism that stigmatizes, isolates and normalizes violence against autistic and other disabled people ultimately benefits everyone,” Brown says. “So too does working through ableism at the individual level and in one's own personal relationships.”
Beautiful video based on an interview with Joshua a 12 year old with Asperger's and his Mom. I love his thoughts & words.We do all grow as parents, because of our children. We will always have to explore new paths & have challenges that others may not. Treasure each conversation & moment. There is a lesson in each one.
____________________________________________________________________________ Joshua Littman, a 12-year-old boy with Asperger's syndrome, interviews his mother, Sarah. Joshua's unique questions and Sarah's loving, unguarded answers reveal a beautiful relationship that reminds us of the best—and the most challenging—parts of being a parent.
Great points in this article that I thought would be worth sharing for sure!! thanks http://www.lovethatmax.com/ for the great information, yet again!
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5 great tips for helping kids with special needs brush their teeth
Sometimes, it's an uphill battle getting any kid to brush their teeth, but encouraging children who have special needs can pose unique challenges. This, I know all too well. Max has oral sensitivity, which can make the act unpleasant for him (although he's had less of it over the years). And because of ongoing oral-motor issues, spitting out water is a challenge.
Oh, and then there's this truth from John Hendry, DDS, a dentist in private practice in Lafayette, Louisiana, who has served as president of the American Academy of Persons with Disabilities: "Often parents are so overwhelmed with all the other simple duties of caring for a special needs child that they don't put a priority on oral health and hygiene." Sigh if that sounds familiar. The goal for children is to brush two minutes for twice a day. Oh, and for the record: Studies have found that manual toothbrushes are just as effective as powered ones.
Dr. Hendry is a spokesperson for the American Academy of Pediatric Dentistry(AAPD), a membership organization that is sponsoring this post. Driven by the rise of tooth decay among children (40 percent of kids have it by the time they enter kindergarten, although tooth decay is nearly 100 percent preventable), the AAPD launched the Monster-Free Mouths Movement—a campaign that provides resources, tools and tips to help fight tooth decay and other oral beasts.
Dr. Hendry, also a founding board member and chairman of the Federation of Special Care Organization in Dentistry who has been honored for his commitment to kids with special needs, shares five key tips that make toothbrushing easier for kids with disabilities...and their parents.
1. Role play Take a tip from pediatric dentists and try the "Tell-Show-Do" method of behavior modification. "We show children—often on a stuffed animal—what we hope to accomplish and allow the child to practice on the stuffed critter to make it a fun experience. They get to be the dentist/hygienist."
2. Tag team Ideally, you and your husband can both pitch in with toothbrushing, especially early on in the process of introducing the habit to a child. "One person can hold and comfort," explains Dr. Hendry, "and the other can actually accomplish the brushing and fluoride application." Note from me: If you happen to have a third adult handy, he or she can pour you a glass of wine afterward! Tee hee. 3. Make the brush comfortable to hold For a child with fine-motor-skill issues, notes Dr. Hendry, "toothbrushes can be adapted with a Play-doh grip, a bicycle grip or even a tennis ball." 4. Play a game Dr. Hendry is fond of the "smile contest"—as in, "Let's see who has the biggest smile!" That way a child exposes his teeth for brushing. "The patient always wins!" says Dr. Henry. You can also entice kids with prizes or stickers, he continues: "Make it a game, but always reinforce with praise."
5. Put on some tunes "We have been very successful with getting kids to brush their teeth to their favorite music," says Dr. Hendry. "One special needs class brushed to Michael Jackson upon arrival to class, and every afternoon before leaving to a softer, country song. Occasionally on Mondays I felt like they had not brushed since Friday's departure, but I was comfortable they were brushing at least ten times a week! The hidden benefit is that most songs last at least two minutes, so we got them to brush for a significant amount of time without getting bored."
Halloween is a mysterious and magical time for children. It's bursting with imagination, pretend play, and of course candy. However, Halloween can also cause fear and anxiety. If you are the parent of a child with a special need, you know what I mean. You want your child to enjoy Halloween, but you face challenges in keeping them comfortable, happy, and safe. For you, Halloween takes a great deal of planning and ingenuity. Here are some costume ideas to help you get inspired and excited for fright night.
Here's a link to some good Social Stories you can print off to explain Trick or Treating. 
