Message to our Candidates for May 4th and beyond

We had great turn out at the regional meetings that we hosted for Individuals, Families, Friends and Candidates. There were 3 key issues we asked families to address to Candidates during this election. These issues are about PEI being accessible, inclusive & supportive in the long term for individuals, families members. All of the Candidates committed to moving our message forward within their parties,regardless of the results of May 4th. You can make a difference by staying in touch after the election, with your representatives and ensure that PEI ACL's message about the changes that need to be made for our sons, daughters and loved ones are made. There needs to be a commitment to making changes, so that the RDSP is FULLY exempt, that the PEI Tax Act is changed to bring the disability tax credit (DTC) equal to the Federal income tax act, and that after 15 years of drafting legislation on Supported Decision Making, we can ensure that persons with intellectual disabilities have the right to have their decisions legally recognized and receive the support they require in making those decisions. 

I have posted the postcards, here, in case you didn't receive one. If you want a hard copy, get in touch with me, and I will make sure you receive one. Thanks!

Found this great video by Jake Anthony, who lives in BC and is an advocate for the Aspergers/ASD movement.Great ideas happening on the West Coast, for adults living with ASD. Good to see Jake's reports.Jake has a wonderful channel on YouTube that you can check out, he does a lot of reviews of art & movies happening in the BC area as well as some other neat ideas! I included one called "Kudoz Meetup" it's really cool & interesting! May have to try one here on this coast! Thanks Jake!








Jake's You Tube channel is: spotlightjake have a look!

13 Tough Truths Only Parents of Kids With Autism Will Understand

This is a great article, super points. I am glad to see it's written by a Dad, although they are by our sides, it's  not often we get to hear their voices, so I am happy to share this article. I also think that although, it says " autism" these are truths that any family, Mom, Dad, care giver, loved one faces when supporting someone with a 'lifetime disability'. We are all experts on our children's issues, regardless of diagnosis. Thanks to all the great Dad's out there, who are walking the path with us, clearing the way, and picking us up, when we need it. We love you. 

By Eric Williams

Autism is not a childhood diagnosis; it is a lifetime diagnosis. And it’s not a diagnosis that affects one person. It affects the entire family and beyond.

I know this because I am a father of 7-year-old identical twin boys on the spectrum. I don’t profess to be an expert on autism, but I am an expert on my boys.

As fathers, we are an essential component of this autism phenomenon, and our parenting experience is unique. Here are 13 observations (and some advice) that dads of kids with autism will understand and everyone needs to know.

1. We have a different definition of “awareness” …

To the world, World Autism Awareness and Acceptance Day is April 2, and April is National Autism Awareness Month. To us, however, every day is autism awareness day. We’ll always be aware of the diagnosis and always work to make others aware and help them understand the disorder.

2. … and of “self-sufficiency.”
The goal of self-sufficiency does not change because of an autism diagnosis, only how we measure and teach it. We understand that each child will be limited in some capacity; however, potty-training, self-feeding, self-dressing, etc. are examples of self-sufficiency goals. Further down the road, we hope to help our children find jobs and live relatively independently.

3. We’re more powerful than the Man of Steel.
Superman wore one “S” on his chest, making him only half the man we are. As a Dad to a child with autism, we proudly wear “Super” and “Selflessness” on our chest.

Our powers include super hearing capabilities (hearing the television over verbal stims), super eyesight (distinguishing the difference among chocolate, a raisin or poop on the carpet), and the ability to predict the future (leaving the snack pantry unlocked and the path of destruction that will ensue.)

4. We’re very flexible (but not in a yoga sort of way).
Inconsistency is the only thing that’s consistent. No matter how much we plan ahead and schedule our days, weeks and months, autism does not work on a schedule (or any schedule, for that matter.) Even the most Type-A of us have learned to allow for some flexibility in our lives.

5. We’re anxious about the future. 
Anxiety isn’t always a bad thing. In fact, the right dose of anxiety is just what we parents of kids with autism need to help us inspire and encourage our child’s independence. Telling ourselves that we won’t always be around for our child (while completely nerve-rattling), actually pushes us to invest in teaching them to care for themselves instead of enabling them to always rely on us.

However, too much anxiety about our child, unfortunately, can strain personal and professional relationships. We know to not take on too many responsibilities alone, and we’re not afraid to ask for help.

6. Sometimes, we’re sad. Really sad.
Unfortunately, at times, we experience some form of depression. Accepting our child’s limitations and the strain that places on our relationship with child’s mother as well as the effects of caring for a high-needs child can have on our job is simply overwhelming.

Additionally, finding the money for treatments and things such as insurance coverage for ABA therapy and developing an caregiving system for school holidays and summer vacation are just as challenging and emotionally draining.

7. We know the importance of teamwork.
We understand besides us, our spouse/wife/girlfriend/significant other is the most important person in our child’s life. Autism can be life-draining at times for either or both of you — but luckily not always at the same time. We know how important it is to support our mate being outside of his/her role of caregiver (think: night out with friends or date night for you two) as well as in the role of caregiver by sharing child-care and household chores.

8. We built this village and we love it. 
The African proverb “It takes a village to raise a child” is especially true with autism. Your village is most likely some combination of medical providers, mental health providers, education system, church, friends and family. We’re essential to building this dream team for our child.

9. We’re more than “the guy whose kid has autism.”
Autism is only a slice of who we are. We’re still a man, spouse, friend, sibling, son, co-worker, neighbor, etc. We still enjoy the things we did before the diagnosis came, and we really want others to understand this. But because autism affects our life, we have to get creative when it comes to integrating all our interests. Many local autism chapters host events like barbecues, 5K runs and family fun days activities that are open to the public. Don’t be surprised if we invite you to attend.

10. We take care of ourselves.
We don’t get to skip doctor visits because we don’t have time or don’t feel like going. Our child and spouse are relying on us to help with the goal of self-sufficiency. And for some children with autism, those goals may never be reached.

11. We have the patience of Job.
We’re unfazed by our child saying and doing the same things over and over again. (Trust me, if autism was easy, it wouldn’t be a diagnosis.) But instead of becoming frustrated, we see these situations as opportunities for our child to practice being self-sufficient and for us to practice mentoring, coaching and teaching.

12. We’re the “good humor” man.
Everyone needs a sense of humor, but as a father of a child with autism, we need it for two very specific reasons: A sense of humor helps us manage the challenging moments of autism, and it can be contagious. Our children with autism can tell when Daddy is unhappy and stressed, and it affects their temperament and behaviors. In fact, our humor influences their humor.

13. We are an expert among experts.
Our expertise of our own children far outweighs the expertise of others. They need our input, and we know that. So we tirelessly stand up for our kids in treatment, in evaluations and in life. Doctors, therapists and schools can be replaced. We cannot.

https://www.yahoo.com/parenting/13-harsh-truths-only-parents-of-kids-with-autism-115310158708.html

Changes sought for disabled Islanders-article in the Journal Pioneer- Friday April 24th,2015

SUMMERSIDE – Candidates from all four parties are being asked to support three basic changes for disabled Islanders

© Mike Carson/Journal Pioneer

Mary Whitehead, right,, from the national Association for Community Living, and Julie Smith, family outreach worker with the P.E.I. Association for Community Living, display the question card that will be given to all provincial candidates. The card lists three areas for change for person with disabilities that the association says will protect the rights of the disabled to be included in community life.

P.E.I. Association for Community Living members were in Summerside Friday to impress upon candidates the importance of making these changes to help disabled Islander to achieve full inclusion in community life.

“As P.E.I. is going to the polls we wanted to bring to everyone’s attention three issues that we have been working on for a long time and not just through this election,” said family outreach worker Julie Smith. “We had these prepared for the last election and all of the key points are the same.”

She said systems and policy change is an area where the association works in.

The association is calling for a change the Registered Disability Savings Plan (RDSP). “The RDSP is an investment we can make for our loved ones for future planning,” Smith said. “We’re asking that the social assistance policy manual sections be changed. Currently it states that there’s an exemption on the RDSP income up to the point that combine RDSP income and the department benefits that meet the provincial low income rates.”

She said if you have a RDSP income for a loved when they get older and they have departmental benefits, the RDSP will be clawed back.

The association wants the policy changed to fully exempt the RDSP for persons with disabilities.

Mary Whitehead, from the National Association for Persons with Learning Disabilities, said P.E.I. is the only province that hasn’t changed this policy. The only other province in question is Quebec but they are in the process of changing their requirements, she said.

The second area the association wants addressed is the allowable base amount for non-refundable Disability Tax Credit to eligible Canadians.

The Government of Canada allows $7,899 for the non-refundable tax while P.E.I. is $6,890 for the same credit to eligible Islanders - money they can deduct from their taxable income.

“We’re asking the provincial government to amend P.E.I.’s Tax Act to bring the base amount equal to the federal Income Tax Act,” Smith said.

The third area the association wants addressed is supportive decision-making.

“It means a person with an intellectual disability may accept help from a representative, a friend, a family member, a trusted individual, who will help him make decisions without relinquishing their right to make the decisions,” Smith said. “The representative may help the person to understand the information. They may help make decisions based on the person with disabilities own preferences.”

She said on P.E.I. there is only “guardianship” which is substitute decision making through the Department of Trustee and Guardianship. This assumes that some people don’t have the capacity to make legal binding decisions and put in place legal decision makers to make the decisions on that person’s behalf.

“On P.E.I. we have been working for decision making legislation here on P.E.I.,” Smith said. “It’s our position that every person with an intellectual ability has the right to have their decisions legally recognized and to receive the support they require in making those decisions.”

Pre-Election Information sessions with Individuals,Families & Candidates

Great article, in the Journal on line, about PEI ACL's  concerns that we shared with individuals, families, service providers and Candidates at the meeting in Summerside this afternoon. Had a great turn out at the session in DeBlois last night as well. All the Candidates are willing to bring the issues back to the respective tables, and hopefully help us to move these changes forward for Islanders. Our next one is in Montague, Tuesday April 28th, from 6-7 at the CBDC/Active Communities Centre –540 Main street, Montague. If you have any questions, contact me at: familysupport@peiacl.org
Thanks, again, to all the Individuals, families, and Candidates who took the time, to come out to the sessions. 

Please click on the link to read:

http://www.journalpioneer.com/News/Local/2015-04-24/article-4123929/Changes-sought-for-disabled-Islanders/1

PEIACL member Josh S. & Paula Biggar#D23

Hal Perry #D27

John Griffin #PC#26

Pat Murphy #D26

Celebrating & taking care of our Earth-

1. Earth Day is an annual event, celebrated on April 22, on which day events worldwide are held to demonstrate support for environmental protection. It was first celebrated in 1970, and is now coordinated globally by the Earth Day Network, and celebrated in more than 192 countries each year.

This site had some lovely ideas for encouraging exploring our earth and all mother nature shares with us. When the weather clears up, there are some great ideas here, that you can do all Spring. Just look through the list, and download what may be of interest to you, and your explorer!

Earth Day is our annual reminder to slow down and appreciate the bounty of the earth. The following 50 Earth Day Activities for kids will encourage children to create objects from natural and recycled materials and spend more time outdoors.

http://tinkerlab.com/fifty-earth-day-activities/

This one also has lots of games, some videos, suggestions for books, links to sites online, and although I realize it's earth day, there are free printable sheets to print off. Looks like fun, check it out. 

http://www.primarygames.com/holidays/earth_day/earthday.php

ALL ABOUT SENSORY BINS!~ I love Sensory Bins! :)

Another great article on sensory bins, I know I have posted some similar articles in the past, BUT I love sensory bins! they are fun to create, address many needs, great sensory feedback-

  and sensory bins are a great way of exploring those benefits.

What is a sensory bin?

The simplest explanation of a sensory bin is a tactile experience in a contained area. They are an awesome hands-on tool for children to learn about their world and their senses. They may calm a child, focus a child, and engage a child.

Why should I make one?

Children- and adults- learn about their world by exploring and experimenting using their senses. When our senses are stimulated, messages are sent to our brain which builds neural pathways that are needed for future learning. You can see, then, why sensory bins are a great way for children to learn using all 5 senses at once.

Through sensory play and sensory bins, children are using the scientific method and are also building pre-math skills, fine and gross motor skills, speech and language skills, creativity and imagination, and social skills and self-esteem.

Above all, sensory bins are fun!

How do I make a sensory bin?

The first step is finding a container to put your sensory materials in. The container should be large enough to let your child explore without moving the materials outside of the bin. Most sensory bins have a base made with rice or another sensory material (bird seed, sand or water). Next, add tools including scooping materials such as spoons and measuring cups so children can scoop and pour!

Next, you can choose a theme for your bin and gather supplies. You don’t have to have a theme to your bin, but making themed sensory bins can be a lot of fun, and ensures a unique and novel experience when one theme is switched with another.

Click on the link, scroll down the article and then there are oodles of options to click on for ideas, categories, topics...endless...

http://community.scholarschoice.ca/general/all-about-sensory-bins

Social Story: Today I Am Having a Blood Draw-video & printable

As often times many of our sons & daughters, loved ones, need to have blood work done on a regular basis, it can be very difficult to explain, manage and understand. The Autism Research Institute  has developed this series of three video social stories that are about 'Having blood drawn', 'Easing anxiety with medical play', and 'Caregiver strategies: positioning for comfort'. These are very well done, and give great tips & strategies, not only for someone with Autism, but any person who needs some extra support, in having such procedures done. 


Individuals with autism often face extra challenges during procedures like physical examinations and blood draws due to communication deficits and sensory issues. Watch these brief presentations aimed at facilitating developmentally appropriate, honest communication.





They also have printable social stories linked to the videos, although they are about the Johnson Center, they would be useful as a reference to you, in writing up your own social story, with language and pictures that would match up what your child's experience would be. Well done!

http://www.johnson-center.org/downloads/pdfs/blood-draw.pdf

http://www.johnson-center.org/downloads/pdfs/blood-draw.pdf

Cyber chat links & articles

 We  had another successful Cyber chat last week, with families on Facebook. It seems to  be a wonderful way for us to connect with each other, on a Wednesday evening, at home. We would like to do it on a regular basis and thinking that it would be beneficial to schedule them for the second Wednesday of the month, from 9-10 p.m. Let us know what you think about that time frame. We can set a discussion topic, other times, we can have an 'open' chat. You can also email me at: familysupport@peiacl.org if you have an issue you would like to further discuss. I am going to post below some links to a few of the topics that we discussed that night. Hope to chat with you all again soon. Thanks for the sharing, support, and connections made. 

http://www.thesensoryspectrum.com/you-know-youre-an-spd-parent-when-part-iv/

http://www.thesensoryspectrum.com/you-know-youre-an-spd-parent-when-part-ii/

http://www.friendshipcircle.org/blog/2013/02/06/take-two-you-might-be-an-autism-parent-if/

http://www.autismseizureselfinjuriousbehavior.com/2015/03/you-might-be-autism-parent-if.html

http://www.autism-help.org/behavior-fussy-eaters.htm

https://www.youtube.com/watch?v=8HjH7G-3jyA - good video, lots of language, but a good message

https://www.erinoakkids.ca/ErinoakKids/media/EOK_Documents/Autism_Resources/Winning-and-Losing.pdf

Checklist: Informal Supports You Can Request for Your Child

This article had some good suggestions about supports for your son/daughter in the classroom, learning environment that you can ask for, even if you don't have a formal IEP or 'plan'. If they are struggling, these tips can offer some assistance while you are waiting for a more formal diagnosis or IEP. 

Supports and Allowances You Might Consider Requesting:

Seating where he learns best. This could be near the teacher’s desk or away from the distraction of doors and windows.

Quick breaks after finishing tasks. He could take a walk to the water fountain.

In-class tools to reduce fidgeting. Your child could hold a squeeze ball. Or his teacher might wrap your child’s chair legs with a latex resistance band for him to kick.

A quiet area for test taking and studying.

Frequent eye contact from your child’s teacher, to keep him engaged.

A cue to quietly keep your child on task. This could be a touch on the shoulder or a sticky note placed on his desk.

A master notebook for all subjects, to help stay organized.

A homework notebook that teacher and parents can sign off on daily.

Key points from the day’s lessons listed on the board.

Use of his own laptop computer for taking notes during class.

Class notes shared by another student.

A routine of checking in with the teacher after class to briefly discuss the lesson.

Pre-Election Information sessions for Individuals, families, friends & Candidates

PEI will be going to the polls May 4th, 2015. It is about PEI being accessible, inclusive and accepting of our sons/daughters/loved ones/friends. Disability needs to be a Candidate’s and their party’s priority.

To help this discussion, we are organizing sessions in three communities. We invite all interested, as well as the Candidates to attend a meet and greet, learn some more information and have a chance to talk.

You can make a difference by getting involved.

THURSDAY, APRIL 23rd - Ecole Pierre Chaisson in DeBlois: 6-7 p.m.

FRIDAY, APRIL 24th - Community room, at the Credit Union Place, in Summerside: 1-2 p.m.

TUESDAY, APRIL 28th - CBDC/Active Communities Centre –540 Main street, Montague: 6-7 p.m.

If you have any questions, please contact Julie at:

familysupport@peiacl.org

Managing Big Emotions Through Movement

A great article that  not only covers Yoga, and explains, the steps, but has down loadable posters, for Calming down techniques, and  handling big emotions with great visuals! I copied the movements, but there are great suggestions and techniques in the article. Have a look at the link, some really valuable information here.

http://childhood101.com/2015/04/yoga-for-kids/

So let’s look at the Move to Calm strategy. Depending on the age and needs of your child, you might practice only one yoga pose (like Child’s Pose) and count down from five while in that pose. But let’s say your child is ready to choose five yoga poses. She could make up her own sequence by looking at our Yoga Poses for Kids page for inspiration or by following this yoga flow sequence.

“I am strong.” Pretend to be a surfer.
To do Warrior 2 Pose: From standing position, step one foot back, placing the foot so that it is facing slightly outwards. Take your arms up in parallel to the ground, bend your front knee, and look forward. Pretend to be a surfer and use your strength to catch tricky waves.

“I am kind.” Pretend to be a tree.
To do Tree Pose: Stand on one leg, bend your knee, place the sole of your foot on the opposite inner thigh, and balance. Sway like a tree. Think of trees being kind by offering shade, creating oxygen, and providing homes to animals.

“I am brave.” Pretend to be a skier.
To do Chair Pose: Stand tall with your feet hip-width apart, bend your knees, and keep a straight spine. Hold your hands out in front of you, pretending to grasp ski poles as you fly down a ski run like a brave and fearless skier.

“I am friendly.” Pretend to be a dog.

To do Downward-Facing Dog Pose: Bend down and place your palms flat on the ground. Step your feet back to create an upside-down V shape with your buttocks high in the air. Straighten your legs, relax your head and neck, and look down between your legs. Think of being an eager and friendly dog.

“I am wise.” Pretend to be an owl.
To do Hero Pose: Drop your knees to the ground and come down to rest upright on your heels. Then pretend to be a wise owl perched on a tree. Twist your upper body one way and then the other.

Start slowly and focus on your child’s success. If your child doesn’t click with using movement as a calming down strategy, don’t push it. Leave it for a while, and then try again. Just like every strategy, nothing is a one-size-fits-all solution, so feel free to adapt and change the yoga method to suit your child’s interests and needs. Introducing the idea of using movement and breath to help their brains to re-boot and re-focus is what’s important.

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To the Typical Siblings of a Brother or Sister With a Disability

We often speak of the importance of recognizing the siblings of a brother or sister who has special needs. This article does a great job. As a parent, of two boys, one with a disability and a younger 'typical' son, it's vital. Thanks to "The Mighty" for posting. 

Dear typical sibling of a brother or sister with a disability,

Today I want to speak to you as a parent — perhaps not your parent — but a parent nonetheless.

I know you’ve had to sacrifice so much, and I wish you hadn’t. For the many times you’ve thought it wasn’t fair, we’ve felt it too. And if you’ve had to miss out on life experiences, please know that we wish we could offer you the world.

Perhaps at times you’ve felt overlooked, because your sibling’s needs demand all of your parents’ attention. But they see you, they see you in the cracks of their vision, and their hearts hurt for the moments they’ve had to sacrifice time with you. But many nights they think about you, of the wonderful person that you are. I want you to know that the pride and love they feel for you could never be measured, you are what keeps them going many times. You make their days brilliantly beautiful.

And you’ve told us – your sibling with a disability has affected you too. Yes, there’s been sacrifices and some things you’ve had to give up, but you’ve gained so much from your sibling too. You’ve said your siblings with disabilities have shaped you into who you are today. We look at you, and we’re sure there is not a more compassionate, caring, accepting and kind human being walking on this earth.

We’ve seen you be frustrated with your sibling, because after all you are siblings. We’ve seen the frustration in your eyes. But then something happens – perhaps it is a look that as parents we don’t recognize – but we see that frustration be replaced with love. You can be annoyed by hands pulling at you and suddenly be a willing participant in the biggest, sweetest embrace that any siblings could ever share. I see the love in your eyes for your sibling, and I cannot believe that the two of you can share this kind of love. It’s not typical, but it runs so deep, and it reflects a quiet strength in you that brings me to tears.

We’ve seen you stand up to the bullies, even when it was scary. Because you understand so deeply that it isn’t right to diminish anyone, in any way.

And you have extended not only a smile but a friendship to the kids that others so easily overlook. Because you don’t, you don’t ever overlook people. You notice them, you affirm them. With your smile and friendship you remind them that they matter in this world too.

You are perhaps more mature than someone your age. You’ve probably had more responsibilities than most of your peers. I guess in some ways you’ve lived a different life, life impacted by disability. And every day you’re out there, moving in this world with an understanding about the beauty and value of life that makes you stand out, and understanding that few people posses.

You’ve known these truths from a young age, they’ve always been a part of your life. As the parents, we arrived to those truths much later in life.

And you smile at life, enjoying every moment. You are stirring the people around you, helping them to see what you see, to know what you know. You are affecting people’s perceptions of disability as you advocate for your sibling, as you give them a voice when needed. You have willingly embraced this role… it humbles me, it brings me to tears.

You are moving those around you, and you will continue to do so.

As parents, we hope to make this place a better place for our kids. But as the siblings – with hearts so full of acceptance, compassion, an understanding of the value of life – you will go out into this world and change it. Not just for your siblings, but for all of us.

Thank you!

If you ever wonder who we look up to, it’s you. We could not be prouder or love you more fiercely.

http://themighty.com/2014/07/to-the-typical-siblings-of-a-brother-or-sister-with-a-disability/?fb_ref=Default