Elf on the Shelf – COVID 19 Style. Coming Soon!

December 1st brings another start to Elf on the Shelf in our home. Since Ema is almost 12 (December 30th) she knows the Elf on the Shelf (Sparkles in our home) isn’t real. I never did Elf on the Shelf with our older four children, but somehow he snuck in for Ema. I can remember having an Elf as a child but he just sat there! I wasn’t going to have him come back again this year…but then COVID hit. 

Ema has a wicked sense of humor and when I saw a PINTEREST post about the Elf being in quarantine this year I thought I might as well bring Sparkles back for one more year to give everyone in the house a bit of a BOOST and some chuckles! (Manitoba is in a shutdown right now because our COVID numbers are the worst in Canada.)

How hard and how much work could it be to put the Elf in a jar…right?

Because Ema has been home since March with the exception of school, swimming at the YMCA in September/October and our Rett family gathering, the work is all worth it. My goal is just to bring some smiles to her face and give her some laughs, even though those laughs will likely be directed at me. Everyone in the house always loves the treats he leaves. Last night Lionel said he was sure the Elf would leave some good Cheezies for everyone??? (It wasn’t in the plans)

I am the only one in the house who really only knows what the Elf will be up to each day. Even though the older kids and Lionel will not admit it… they wake up looking for him too! Our one year old St. Bernard Walter is always looking for him too, but because he thinks Sparkles is a chew toy!

I fooled myself into thinking I would get a 14 day break from planning by having the Elf in a quarantine jar. Although this year is the most organized I have been, it has also required way more work and thought.

Everything I gathered for Sparkles this year was purchased local or from Etsy (Canada). A Huge Thank you goes to Elanor M. and Stephanie G. for helping me with a few items!

 I will post a photo each day of Sparkle’s adventures in case you want to follow along!

Warms My Heart

Every year for Rett Syndrome Awareness month Ema’s school holds a “Purple day”. Every year it is arranged by staff and myself. This year has ended up being a bit different.

It started out normal with deciding that we would give each student in Ema’s end of the school (grade 5-8) a purple mask, we just hadn’t decided what that would look like yet or which day it would happen. We usually send home some kind of information on Rett syndrome and some years I go into answer questions for the kids. This year since Mackenzie is working in the school, she spoke to some of the younger classes. Each year always looks a bit different but we try our best to do change things up and make it new and fresh.

We realize we have to raise awareness but we always ask Ema in advance what she is comfortable with. Ema has to be comfortable with what we do or say about her. She normally doesn’t want Rett syndrome brought up in any conversation. We try and respect her wishes as we would for all our children but in order to advocate for her and raise research money so someday we can find a cure, we need to have these days.

I received a call from the school late Friday afternoon after classes had all ended. The resource teacher called to say she wanted to tell me about something the kids planned all on their own for the following week.

Since being back in school, kids have been holding “theme” days on Fridays. These are kid driven days and they come up with the ideas all on their own. One young lady suggested they have a “purple” day for Ema and then proceeded to ask all the other classes to take part; They all agreed. To know this was child driven and not teacher driven warms my heart. (and makes me cry)

This has always been what we advocate for. A friend of Ema’s, did this on their own without their parents or teachers pushing.  It is the best feeling to have that young lady not need any encouragement and still support Ema for who she is. Ema’s friends are our future. It is times like this when I know our future is bright and I remain hopeful!

I once had someone tell me something similar about one of my older children and how they appreciated that they were there for their child with special needs. At the time, I didn’t think anything of it. I didn’t realize how important it was for peer support. I realize it now. 

Ema is Ema. Ema is NOT Rett syndrome. It is so wonderful that she has friends who will advocate for her all on their own. 

This Thursday (No school this Friday) the theme day is “Purple” at Ema’s school.

Remembering “D” Day

Today is “D” Day.  

October 15th, 2013 is the day Ema was diagnosed officially with Rett syndrome.

“D” day is one of those days that people see in so many different ways, some remember it each year and others choose not too. For us, it is a day that we will never forget. 

It was the day after Thanksgiving in Canada. We had received a call the week before asking us to come into genetics. Even though we didn’t know we were receiving the official diagnosis, it was a long few days. We thought we were going back for a follow up as they had asked us to bring Ema along. Ema was really struggling at the time with seizures and health issues. We did know something was different the day we arrived as we went to a blank white room with a table and chairs instead of the regular office. Neither of us were ready for what we were going to be told, even though we knew in our gut that Ema had Rett syndrome. To this day both Lionel and I can’t remember what was said in the meeting except “Ema has Rett syndrome” We can’t remember the drive home. We can’t remember anything else. We have no idea what happened when we got home. We both agree that the drive was quiet and nothing was said. It was one of very few days that sits vibrant in my mind.

To this day, I still appreciate the advice I received from the first parent I spoke to about Rett syndrome, Terry Boyd. Terry was the president of the Ontario Rett Syndrome association and also has a daughter who lives with Rett syndrome. Her words really made me think about how I saw Ema and how I treated Rett syndrome. I try hard to be that same person for those in Manitoba who receive the diagnosis now.  

She told me that Ema was still Ema. Ema was not Rett syndrome. Ema was and still is Ema. Ema was just like anyone else but just happened to have to deal with a horrible neurodevelopmental disorder. She told me not to let Rett syndrome define Ema. We could either fight the diagnosis or accept it and move along with what really needed to be done to help Ema thrive. We decided to move forward and deal with making life as easy as possible for Ema. We wanted to give Ema all the same experiences as our other children.

“D” Day for us today is a way to celebrate who Ema is and reminisce about how far she has come. We get to celebrate so many wonderful therapists, doctors, teachers, friends and family who continue to stand with us and help along our journey. We thank each and everyone of you. We thank those in Manitoba, across Canada and the world who keep fighting and looking for a cure for those who live with Rett syndrome. 

Many things can get in the way of making sure Ema stays healthy and gets the same opportunities as others but we take everyday, one day at a time. It is hard, really hard but the joy we get from Ema way surpasses anything we have to go through. Ema really is the one who battles hard every day. We are thankful to have Ema in our lives and love her unconditionally.

I AM BACK

I welcome you all back! I haven’t posted to my blog in a long long time. We take many different directions as we travel down this journey with Rett syndrome and in life. I found myself overwhelmed and needed to take a step back. My intention now is to post more regular, but you never know how things will go. Thank you for taking this journey with me.

I have a few projects on the go right now. I will gradually fill you in on all of them but the first one I am writing on is something really important to our family.

In May I threw a surprise 50th birthday party for Lionel. He never asks for anything and just keeps working to make sure we all have what we need, never complaining. I wanted to do something for him as a way of saying Thank you. We managed to surprise him by holding a meal at Roxy’s, our local restaurant, surrounded by 80 friends and family. He really appreciated seeing everyone there.

Although all went really really well, there was one part of the evening that was difficult for him and our older children.

Most people either walked around or by Ema and never acknowledge her. This is something that never happened to our other four children.

Lionel and the older kids found it really difficult not to take personally, specially when it was all family and friends. I have become numb to it as I see it on a daily basis.

We have learnt to take a lot of things in stride after having Ema diagnosed with Rett syndrome. We understand people don’t know what they don’t know or understand. Some are scared to say or do the wrong thing, so they tend to avoid her at all costs. Even though we do understand, it is still one of the most difficult things for us to deal with and reason with.

For those of you who don’t know much about Rett syndrome, understand one thing …Ema understands everything, likely more then both you and I, the issue is the output. This goes for anyone who has been diagnosed with Rett syndrome.

You can speak to her like anyone else and she understands. For some odd reason though when a person can’t voice their words like you or I, they are assumed to not be competent. So, in hopes of helping Ema communicate better we are going to teach people how to model and engage with her, using her way of speaking.

We know by educating people and raising awareness, we will change things for Ema and all others living with disabilities.

If you speak with me you, you will often hear me say Ema is surrounded by wonderful people. Two of these people, Ema’s school Speech and Language Pathologist, Melanie and her school resource teacher Jona, have agreed to help hold a fun information night on AAC (Augmentative and Alternative Communication) and Rett syndrome.

“Rett syndrome is a processing disorder; it’s not the input that’s a problem, it’s the output. Everyday she fights her biology to make choices” – Army of Us

By learning how to speak using Ema’s communication system, you will be ready to dive in and ask her questions, play a game, or tell her what you did on the weekend. The communication possibilities are endless! The more we all speak with Ema using her communication system, the more we all help her learn and grow.

September 12, 2019
7-8 PM
Oak Bluff Community School

There will be a brief introduction to Rett syndrome, but the AAC part will apply to anyone who is nonverbal. The evening is planned to be an hour long and be full of hands-on learning opportunities (with great hand-outs to go home)!

This will be open to friends, families – aunts, uncles, grandparents, school teachers and staff, respite workers, aids etc. We ask that those who are nonverbal not attend. We are asking that they don’t attend so that people feel comfortable asking questions and learning. We know that Ema HATES being spoken about when she is present. It makes her uncomfortable and we don’t want that for her or anyone else. We want a SAFE environment for all.

We will have both high tech and low tech devices. There will be a maximum number we can have at once. Please message me at guimond@mymts.net or call 204-770-0210 to register.

I hope that you will all join us!

Living with a Sibling who has Rett Syndrome

***Just a note: I am writing this after a very long day in a car with little sleep. My english and writing skills are not the best at regular times***

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We have spent the day in Wilcox Saskatchewan, watching our older daughter Mackenzie play hockey in the Mandi Schwartz tournament. This tournament is hosted by the Nortre Dame Hounds. Tomorrow  (Today) Mackenzie’s hockey teams plays for the championship.

Many times, living with a child who has Rett syndrome, we forget about our other children in our home. We forget how siblings are forced to grow up fast and become second caregivers. When you can’t trust anyone else to take care of your child, you rely on an older or younger sibling.

We rely on Mackenzie.

Mackenzie is our second set of hands. She is there in the hospital when Ema is having seizures, or at night when she can’t sleep or when Ema needs food or to be dressed or to be cleaned up.

It is so difficult for siblings to “escape” reality and live a normal kid life.

We have really struggled trying to give that type of normalcy to our other four children. For our older daughter Mackenzie, we have found that one place with Balmoral Hall School and the BH Blazer Female Hockey Prep team.

I grew up with a grandfather (Jimmy McFadden) who played in the NHL. He won the Calder trophy (Rookie of the year) and Stanley cup. He played with some of the best players who ever played the game…Jack Stewart, Sid Abel and Gordie Howe, just to name a few.  Grandpa’s nephew Bill also played in the NHL, along with two of his children who play high levels of hockey still. So many people think having Mackenzie play with the BH Blazers is all about the hockey…but it isn’t. Hockey just turns out to be the bonus part.

BH has allowed Mackenzie to be a teen and to be her own person but it has allowed us to feel better about who we are as parents. (By lending us a helping hand)

Having a special needs child takes a lot of energy and time. In our hearts, we know we are doing our best, but sometimes we feel like it just isn’t good enough. Guilt plays heavy on us.

It took us awhile to figure out that not only were Lionel and I tired, but so were the rest of Ema’s siblingings. They all play such a huge role in helping and caring for Ema.

Mackenzie switched from a small hockey school program in rural Manitoba to attended a large school in Winnipeg for her grade 9 year. This was the same year that Ema’s seizures started getting worse. Mackenzie’s grades dropped and we had no idea what was going on or how she was doing or even what classes she was taking. We knew something had to be done, so for her grade ten school year we applied to have her go to Balmoral Hall School, a private all girls school in Winnipeg. The number of students in each class were lower and there was a different expectation. Right from the first interview we knew this was something different. We did have to make some tough decisions for it to all happen. Private school isn’t cheap and with all the added costs of Ema’s therapy and needs we really had to dig deep to make it work financially. Even with the extra financial strain, it has been a life saver for us all.

Mackenzie is thriving. School isn’t always easy but she managed to be an honor roll student in grade ten. (and hoping for grade 11) The staff have all reached out and have really helped her push herself. We knew she was capable of having great school grades but we spent so much time caring for Ema we ignored the fact that Mackenzie needed help too. At BH Mackenzie is not just a number. They have continues to support Mackenzie and our family. They continued to listened to us and have reached out in so many different ways.

Even though the school has helped Mackenzie exceed with grades and confidence it still wasn’t all Mackenzie needed to be “just a teen”. That is where her hockey team this season has stepped in.  Because the BH Blazers play in the JWHL they travel mostly into Eastern USA and Canada. This part allows Mackenzie to “escape” our reality at least every third week-end, hang with her peers and be part of her own special group. These girls come from all different backgrounds and situations. This group of young ladies has been a life line for Mackenzie. To see her smile and really enjoy everyone has been a huge relief for us no matter what the financial cost.

The icing on the cake for us is that this group is great with Ema. There is nothing better than hearing all these young ladies say “hi” to Ema or ask her for high fives when they see her in the arena lobby. It not only means a lot to Lionel and I but it means the world to Mackenzie.

GOOD LUCK to Mackenzie and the BH Blazers tomorrow.

 

 

Elf on the Shelf Pays Miss Ema a Visit

Today we have a new visitor in the house. Normally I would say no to visitors as I can’t handle everyone in our home now, BUT this is a very special visitor. Her name is SPARKLES and she has been sent to us from SANTA. She is here to watch over Miss Ema and report back to the North Pole.

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I had never done Elf on the Shelf for my older children and I likely wouldn’t have started with Ema either but we felt like it was a way of getting Ema to communicate. I wanted to work on having Ema tell staff and classmates what was going on in our home and share stories just like all the other kids in her class. It had to be interesting and easy to understand for both Ema and her classmates. It was also a way to light a fire under my pants, as I am horrible with daily correspondence with the school. I tend to forget a lot 🙂

Most people take communication for granted, we have to work really hard at it in our home. I think what frustrates me most in life right now is that everyone assumes they have the right to say anything they want, no matter how it affects other. Sometimes I wish everyone had a bit of the apraxia that is such a huge part of  Rett syndrome. If it took everyone a bit more time to respond, maybe more people wouldn’t blurt out or email such hurtful things. I wish people could  realize how their words really effect people.

This might be hard to understand but Ema can be very shy. She is  very conscience of what is going on around her and likes to fit in just like every other child. People forget that Ema understands everything because just because she can’t speak. When you get to know Ema, you realize she has a wicked sense of humor. (Sparkles  really wasn’t the name Ema wanted but I didn’t think Ema’s sense of humor would be welcomed by many at school )

Ema reminds us of  Sparkles. They both can’t speak in our home, they both have a twinkle in their eyes and they both like to get into a bit of mischief.

I will try to post at least a photo each day of how we are all coping with our new visitor. I hope you enjoy our journey with Sparkles the Elf!

A Needed Reminder

I started this blog to help me deal with our journey with Rett syndrome.  I felt like I had no control over anything with Rett syndrome, but by raising awareness and sharing our journey it gave me some power and control back.  I might not be able to help Ema get ride of Rett syndrome but I could help another family or person cope and not feel alone. Today was a bit of a reality check for me. I was reminded  of how life can just get away on you. I was reminded that I had lost my way or my focus a bit.

Over the last year and a half Ema has been dealing with some  health issues, mainly uncontrolled seizures.  Issues that were really hard and difficult to deal with. I felt like I needed to be strong and get through it. I did survive, but barely. Thankfully Ema’s seizures have stopped, for now anyway and I have a bit more time to reflect and work on myself  I felt like I barely had enough time to breathe not alone actually think.

I don’t like to admit to many … this is a really difficult journey.

Today, I had the opportunity to hear about another family’s journey. It was a reminder to me  that I need to slow down and appreciate each step in life. I need to appreciate all the blessing that Rett syndrome has brought us and to take each day, one step at a time.

I met a young man who has a daughter with Autism. Our meeting had nothing to do with Rett syndrome or autism. His family is in the process of going through genetic testing. I have not met his daughter and I have no idea what genetics is testing for. Regardless of what testing is being done, I found myself reliving that place and time in my life when we too were in search of answers.

It was one of the most difficult times I have ever been though. For me it was more scary than being in emergency watching doctors and nurse stand over Ema as she is having one seizure after another.  So much was happening to Miss Ema and we just didn’t know why. I was used to being in control and now I had control over nothing at all. Lionel and I both had so many unanswered questions and so much of that anger was taken out on each other. We had no clue what was happening with Ema and  we also had no understanding of how the medical system worked. We spent hours and days trying to understand why you had to wait to have tests done because of funding and why it wasn’t just as simple as going to one doctor. Everyone seemed to be specialists and experts: Friends and family all had their own diagnosis and therapists and caregivers had different ideas. We spent hours asking “Why us? Why Ema?” Looking back, the pressure to do the right thing for Ema was so huge and overwhelming. We either gained friends and family in the process or we LOST them. It was a hard and lonely road.

I have change so much in the past 8 years. Before Ema was diagnosed, this young man’s story would have just skipped over me. Today it is a reminder to slow down. It was a reminder that I need to get back to the basics and share my story. I need to share our story in the hopes that it might help just one person.  It is a reminder that even though this journey in Rett Land is super difficult, I have survived and will continue to.. 

Just like I wrote in my first blog, I would love to have you come along with me as we journey into Rett Land!

Rett Syndrome Awareness Month

I am so happy to be able to post again after being away for such a long time.

This is the first time in over 15 months that Ema has been seizure free for more than a 8 week stretch. We have finally found a combination of medication that is working to stop her seizures right now. We just hope that it continues to help for a while.

When Ema isn’t feeling well, I sit with her and hold her tight. This allows me lots of time to think. I come up with all these wonderful ideas on how I will raise awareness for Rett syndrome in October. Before I know it October sneaks up on me and I have nothing planned. This year is no different.

I am just going to start this month with a post about a company right here in Manitoba who is helping  Eyes on Ema raise money and awareness this month but has also played a huge part in helping our family.

Supper Central   – http://www.suppercentral.ca

“Supper Central takes the shopping, chopping, and preping out of your daily meal routine. We provide fresh, homestyle meals for our customers to take home, cook, and enjoy! Assemble meals yourself in our assembly kitchen; place a pick up order for us to assemble; have your order delivered; stop in and grab meals on the go from our Made to Take cooler; or organize a Private Meal Assembly Party for you and your friends.”

Supper Central has been a life line for our family when Ema has been sick. When we have had one of those nights or days that are so long and we have no energy. All we want is to have a good wholesome meal and relax, but don’t feel like going grocery shopping and then coming home to prepare it. (and we don’t want fast food) We stop at SUPPER CENTRAL and pick up a fresh prepared meal. Everything is proportioned and ready to cook and the meat and ingredients are always excellent.

Much of the time we are already lacking sleep, so it is very important for me to keep the family eating healthy. These meals allow me to do just that. I try to keep a meal or two always in my freezer in case Ema ends up in the hospital and the kids need to eat. The instructions are so easy to follow and the kids LOVE making them.

I also love giving SUPPER CENTRAL for gifts. I have purchased them for other friends who are in a similar situation and for new moms.

One of the important things for EYES on EMA is to help other families who are having a rough time. After families received a diagnosis and everything has calmed down, families are often forgotten. We want to make sure that doesn’t happen and families always know that they are not alone. We are working with the Children’s hospital right now, trying to secure a plan that allows us to send out a SUPPER CENTRAL meal to those families

SO, if you have never purchased a meal from SUPPER CENTRAL in Winnipeg, you need to start this month. For the month of October, Rett Syndrome Awareness Month, when you purchase the Bruschetta Chicken with Parmesan Pasta from SUPPER Central, the assembly fee will be donated to EYES on EMA. I can’t thank the wonderful women at Supper Central enough for believing in EYES on EMA and for helping to raise awareness for Rett Syndrome and all special needs this month.

Silent Sundae Bar

Life has been crazy, so I haven’t made the time to post in a long while.

BUT this event NEEDS to be written about, celebrated and shared!!!!
Because you are reading this on my blog, I am going to assume you know my daughter Ema has Rett syndrome and lost all of her speech when she was young. She has had to learn how to communicate in a different way. She is learning how to communicate by using a Tobii Eye Gaze system and an iPad along with some other non-electronic methods. (IF you don’t know our story you can read it in “My Story” on this blog.)

As you read this post you might think this event is just about how Ema communicates, but it is NOT. Due to privacy, I only refer to Ema, but there are many other children just like Ema in our school and division. This is a celebration for all of them!

Ema attends Oak Bluff Community School in Oak Bluff Manitoba, Canada. The school is part of the Red River Valley School Division. Our school division hires their own speech and language pathologist who works with all of the children in the division on a rotation. We happen to have a very special speech pathologist who believes in Ema and her ability. Melanie is open to new ideas and is always willing to listen. She is always learning, searching and inquiring about new things that might help. These qualities are HUGE for parents with a special needs child. Most of the time all we want is for someone to listen.
I am MORE than excited to share this event that Melanie has planned for Ema’s school.

Melanie has organized the first-ever AAC Awareness Day in the Oak Bluff School, which will take place on Monday April 11th, 2016. It will be a fun day focused on AAC. (Maybe even the first of its kind in Manitoba!)

“Augmentative and Alternative Communication (AAC) refers to the various ways individuals who cannot speak may communicate their ideas.”

Some individuals may be non-speaking because of genetic disabilities such as Rett syndrome. Others may be born without speech or become non-speaking later in life due to other disabilities like strokes. There are various combinations of AAC such as using pictures, alphabet or words, gestures, sign language, computers, and electronic talking devices, like Ema’s iPad or Tobii Eye Gaze system.

AAC gives individuals like Ema a way to express their wishes and feelings and also an opportunity to control their lives, which many of us take for GRANTED.

Melanie will be setting up a lab to teach the students what AAC is and how everyone uses different ways to communicate. The students will then have the opportunity to use the iPad, eye gaze system, BiGmacks, Supertalkers and Communication Boards. The early year’s classrooms will learn about a girl named Katie though a story called “How Katie Got a Voice”, a special book written about a little girl who uses AAC to communicate. Each early year’s classroom will keep a copy of the book for their library. (Donated by Eyes on Ema)DSC00747

The REAL test will come for the students as they try to put themselves in a position of needing to use AAC to order an ICE CREAM Sundae from the SILENT SUNDAE BAR. I am happy and proud to say Eyes on Ema will supply the ice cream, cups, spoons and napkins as part of raising awareness for all disABILITIES.

There are many things that excite me about this day. First, we are raising awareness for special needs in a positive way! Many times people only see and hear non-verbal children when they are frustrated and acting out due to not being understood. This will be a FUN day of learning instead!

For one day…the spotlight will be on her ABILITIES and uniqueness. This day isn’t about trying to make Ema be like everyone else but instead everyone else will try to be like her!

Ema is a tough little girl to figure out and understand. By giving other students a chance to try her way of communicating, hopefully it creates some compassion and new understanding not just for Ema, but for others too.

It makes me proud to have Ema be part of such an exceptional group of people. Melanie has gone way beyond what is expected to make sure that the children in our school division who need help, get it. But she doesn’t stop there, she also helps to educate all the other students about communication too. The principal, Ms. Lee and resource teacher, Mrs. Green, have been open and willing to try new things and host events just like this. Mrs. Green arranged and found  time in the busy school day so Melanie could turn the idea into reality. Sometimes with our “normal” children, I feel parents take for granted what we think is “OUR RIGHT”. Having four children older than Ema, I had some very unreasonable ideas and requests. I still do.

The difference now is that Ema has forced us to slow down and actually look at what we have, not what we DON’T.

Teachers and schools administrators are given ultimatums without families even thinking about anyone else’s children. Sometimes the issues that parents find to be a “HUGE” issue right in the moment, are really not that “BAD” after all. Our community is really blessed to have this group working with our children.

I hope that the first AAC Awareness Day and Silent Sundae Bar in Oak Bluff will be the start of a great yearly event, not only for our school and our division, but for other schools in our province.

AAC


A Note about Melanie. Melanie is also the creator of a charity called “The Frosting” Foundation. The foundation supplies a “Birthday Box” to children who are in hospital for their birthday. The “Birthday Box” is filled with a Birthday banner, two paper pinwheels, paper cups and napkins (solid colours, polka dots, stripes or chevron only) and paper straws (all patterns), a blank card for hospital staff, family and hospital friends to sign, a party hat for the Birthday child, a battery operated candle (they aren’t able to light an actual candle in the hospital), a small Birthday tablecloth, age-appropriate activity or comfort item such as a colouring book, a travel-sized game, a lip gloss or a nail polish . I am also proud to say that Eyes on Ema supplied 1000 straws so that the first 40 +boxes could be created. My older daughter Mackenzie and I had the pleasure of helping pack the first set of boxes. Check her out on Facebook or at http://www.frostingfoundation.ca