PEI ACL FAMILY NETWORK:
This blog is a place for families, individuals and those supporting a loved one with an intellectual disability to find information, resources, share stories and connect with others.
Find out more at our webpage: www.peiacl.org
I am sure, if your house is like mine, you are looking for that 'duel purpose' gift that will address a number of needs.Found this great site, and by the looks of it, the author is adding new items frequently. Certainly worth looking at, some great sensory feedback toys that will address a number of issues, and most importantly be FUN!! The bands look totally awesome!! There is a great selection, that would cover many needs. Clothes, toys, larger manipulatives, sensory fidget toys, gross motor, fine motor, chew beads, weighted toys and blankets, games, cocoons,bean bag seats..oh the list goes on.... Please check out the link. Each picture has a write up and a link to be able to order, there are a few that I see are not available in Canada, but there are many other choices. Hope it gives you a few ideas.
As this week is national Down Syndrome Awareness Week, thought I would share some links to the Canadian Down Syndrome Society Webpage,http://cdss.ca/ndsaw/
The Canadian Down Syndrome Society is proud to announce National Down Syndrome Awareness Week (NDSAW), November 1-7, 2015.
NDSAW is a public awareness campaign focusing on the unique strengths and abilities of people with Down syndrome. By doing so, we work to ensure equitable opportunities for all Canadians with Down syndrome.
Why do we celebrate NDSAW?
Public awareness occurs year round through efforts made by the CDSS and local groups. There are many Canadians from many walks of life who benefit from understanding the value of inclusive communities. A special awareness week creates an opportunity for everyone to make a concentrated effort to celebrate the contributions of people with Down syndrome to society.
Declaration of National Down Syndrome Awareness Week
Canadian National Down Syndrome Awareness Week is an annual observance sponsored by the Canadian Down Syndrome Society, November 1-7
At this time we take the opportunity to highlight the unique strengths and abilities of fellow Canadians with Down syndrome
Now is the time to demonstrate to each other and the rest of the world that Canada is a nation of people committed to a Canada where ALL are welcome, we embrace diversity and we value everyone’s genes equally
About one person in 800 is born with Down syndrome. Each one is a person first and a person with Down syndrome second
Down syndrome presents challenges for a child, their parents, their family and professionals in the fields of health, education and social science. It is vital that these challenges be met to ensure equitable opportunities for individuals with Down syndrome
As Canadians, we celebrate our similarities, as well as our differences, knowing we are richer as a result!
__________________________________________________________________________ Also wanted to share Jaxson's story, He has two great Moms : who have a blog and they explained it like this:
My name is Holly, and along with my wife Alex, are mommas to a beautiful baby named Jaxson. Jaxson made us mommies overnight and has thrown us, head first, into the world of parenting, Down Syndrome and adoption. This is our blog about our randomly, beautiful life together.
Check out their adventures at the blog, there is also some great stories, and they talk about Jax's issues with sleep apnea in the October 24th post, that I am sure could be helpful to some.
_____________________________________________________________________________ Thanks to the Utah Down Syndrome Foundation, for creating this video called: "Down syndrome 101", an easy-to-follow video explaining the basics of Down syndrome. This educational video is perfect for new and expectant parents, and also great for use in school classrooms. Please check it out, and share.
________________________________________________________________________________ This is another great video!! we are more alike than different!! Check it out! What do you want to be when you grow up?
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
I am sure, if your house is like mine, you are looking for that 'duel purpose' gift that will address a number of needs.Found this great site, and by the looks of it, the author is adding new items frequently. Certainly worth looking at, some great sensory feedback toys that will address a number of issues, and most importantly be FUN!! The bands look totally awesome!! There is a great selection, that would cover many needs. Clothes, toys, larger manipulatives, sensory fidget toys, gross motor, fine motor, chew beads, weighted toys and blankets, games, cocoons,bean bag seats..oh the list goes on....
