Sponsor Tatum for Stand UP for CE 2016!!!

Hi Everyone!

Tatum will be participating in Stand Up for CE 2016 with the March of Dimes.     She attends the March of Dimes weekly for Conductive Education classes where they work on life skills, standard reading and math curriculum, art, play, mobility, gaining independence and so much more!   It's a fantastic program that Tatum has enjoyed being part of for over two years.   We've seen incredible improvements in Tatum's social interaction, independence and her ability to walk as a result of Conductive Education.   

Her goal is to raise $4,000.00 but she can’t do it without your help so please join us in raising money for a great cause by sponsoring her campaign. Just click on the link below and it will take you to her personal page where you can sponsor Tatum.

Please note that tax receipts will be issued for donations over $10 and 50% of all of your donation will go directly towards Tatum's Conductive Education tuition fund at the March of Dimes for 2016!!   

Thank you so much for your generosity!

TO DONATE click on the link for 'My Personal Page' below

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The Reain Family

A Great Idea to help my Wintertime Blues!


I just received this message from one of Tatum's Conductors at the March of Dimes... great idea Mhairi!  Thank you!

"Hi kim

i was reading your blog about skating with Tatum and wanted to share an idea we use at our local rink. There are several families in the area with kids in adapted strollers who were having this issue. So they took a family photo of themselves on the ice and asked to put it up in the staff room of the rink, under it they introduced themselves and explained that their child uses an adapted stroller and that is they see them on the ice its "ok" :)

Because the staff see the picture every day they now know the family by name, greet them and 9/10 times will feel comfortable coming over to ask if they need any help getting the kids organised and on the ice.

Our family also used to use this tactic many years ago for my foster sister. We would leave family photos, names and pertinent information at places we would go to regularly so that people who were too shy to ask (or ignorant to her differences) had the necessary information. This worked great at restaurants as we could tell new wait staff "tell the kitchen Josie will have her usual" and the kitchen staff knew how her food needed to be prepared without us having to explain it (as they had a photo and note in the kitchen about her food)

Mhairi (Vari) Watson

Senior Conductor, Conductive Education programs
March of Dimes Canada"

Wintertime Blues

The Christmas Season has always been one of my favourite times of year.   I love the warmth, the music, the smells, the food and eggnog, the sparkling lights, the gifts and time with friends and family.

I have also always loved winter and all of the outdoor activities we have access to in Ontario.   When there is snow, we love to ski and toboggan and we also love to skate... with or without snow!!

Christmas and Wintertime have become my most challenging time of year since Tatum joined our family... mostly emotionally challenging. We still enjoy all of the things that I've always loved about Christmas but gift giving for Tatum is really tough.   I wrack my brain trying to think of that perfect gift for her - she deserves the world in our minds.  What will bring her joy?   Is there something that we could play with together?   What would be fun for her and also good for her development?  The choices available are many but as well as I know our awesome little girl, she is so tough to chose a gift for.   My heart sinks as I'm walking through a toy store and a sales rep asks me if they can help me find what I'm looking for.   Inevitably, they just don't understand what Tatum would love.    Sigh.   I suppose the reality is simple, she doesn't need much to be happy.   She needs her family, her friends, her pal 'puppy', a good night's sleep, food and a good string of beads.

We all love watching each other open the gifts we've chosen or created for each other.   We only ever open one gift at a time so that we can appreciate the gift we are receiving or admire the gift someone else is receiving.   This Christmas morning, we took so much time enjoying our gifts that we still weren't done opening them at the end of the day.   Many of the gifts that were left to be opened were Tatum's - she wasn't in the mood to open them so we waited until she was ready.

It was very obvious this Christmas morning that Tatum was very pleased with a couple of items from Santa.    She saw a coil necklace hanging out of her stocking and she reached in and grabbed it with determination!  "I love it" was what I could imagine her saying.    Santa also brought Tatum a sand and water table... she stands at it all by her self while splashing water and throwing sand everywhere.  

Tatum wasn't interested in opening any of her gifts herself so her big sisters lovingly opened them for her.   Some of the gifts chosen for her did not seem to be noticed at all.   Instead of Tatum being excited about the gift she received and thanking us for it, we got excited for her and thanked the 'giver' of the gift.    It's different.   It's confusing to me that I have let go of my longing to hear Tatum say I love you (because I know she loves me), but I'm challenged in letting go of my longing to know she is excited about Christmas morning and all that it brings.

We clearly witnessed Tatum's obvious Christmas joy a few times over the break.   The first was seeing her beaming smile as she crawled lightning fast to get as close as she could to Chris and his guitar as he played what seems to be her favourite holiday song; Jingle Bells.    The second was at our Santa visit with all 3 girls.   Unlike previous Santa visits, Tatum smiled the biggest smile when she saw Santa AND gave him a hug and pulled his beard!   It was obvious that she knew exactly who the guy in the red suit was!    To me, this was huge... this was such an appropriate reaction, my heart melted as did Riley and Peyton's.   The third was our Christmas day turkey dinner.   This year, all 5 of us ate Turkey, Potatoes, Gravy and Peas and loved it!!    Tatum devoured our feast as did Riley, our meat-hater.... gravy apparently makes everything taste awesome.

My feelings of discontentment around the holidays are all about my expectations and my story of what Christmas 'should' be like.   Working on accepting our new normal is an everyday job, it just gets heightened at traditional times like Christmas.

Wintertime in general brings a set of challenges that are pretty diverse.   Tatum has poor circulation as a result of her low muscle tone, low activity level and her brain injury.   As a family, we don't care if it's 40 below, we will find a way to have fun outdoors.  

We are a skiing, skating, tobogganing and occasionally snow show/cross country ski family.

One of our biggest challenges is how do we keep Tatum warm enough for long enough for her to enjoy and endure our activity and still make it easy for her to move!?  Once we get all the gear on her, she looks like a giant sausage and kind of rolls around like one too!

Our hope is to get Tatum skiing with us next winter.   The problem is that Blue Mountain does not offer a special needs skiing program at this point, and that is where we like to ski.   It is my intention to get in touch with Intrawest, Track III and CAD ski to see if I can help bring a special needs ski program to Blue... it's been on the 'to do list' for a while but I will get to it soon for Tatum and our gang... Mamma's ready to take a stand.   For now, starting this weekend we will divide and conquer.   Chris will ski for a bit while I watch Tatum at the chalet, then we will switch it up so that I can get out for a ski too.    One day very soon, all 5 of us will ski together... look out!!

Tobogganing is so fun but even for the strongest little bodies, it's pretty dangerous.   Up until last year, we made Riley and Peyton wear helmets on the hill.   They are now 'too old' (read 'too cool') to wear helmets so I stand at the top of hill watching them go down and walk back up with my breath held.    To put Tatum on a sled with her sisters and send her down the hill seems like one of the most idiotic things I could do...  not to mention the fact that she wouldn't likely be able to keep herself sitting the whole way down.

Skating as a family is one of the activities that we can all do together.    Obviously, Tatum is not skating on her own at this point but we do get out to the rink quite often and we all love it.    Chris, the girls and I all slap on our skates and we take turns pushing Tatum in her adapted stroller.   The thorn in my side is that every single time we get on the rink, we are told to take our stroller off the rink - that it is not allowed.   This means that every single time we go out as a family to skate, we have to explain in front of Tatum and our other kids that Tatum has special needs and cannot skate on her own.   It happens at our local rinks and even happened at Nathan Phillips Square when Mayor John Tory was out greeting the skaters!  We have to justify Tatum's right to enjoy a skating excursion with her family and remind her that she is different from the rest of us.     I hate that this happens.   The fact is, wheelchairs and adapted strollers are allowed on the ice.   Strollers are not for whatever reason.   We've contacted our City Counsellor and requested that a notice be put up at the rinks we frequent but no one seems to appreciate how an ignorant request to take our adapted stroller off the ice, steals a bit of joy and normalcy from our family outing.   I feel obliged to take a stand on this but I'm not sure where to start.   A new friend from Beverley School is helping us draft a letter and I may just call one of our local news stations to see if anyone wants to hear our story and help families like ours avoid this confrontation on the rink.

I think most of my posts are pretty upbeat - sorry to be a downer here! This is all part of my journey to find a way to enjoy winter and Christmas whole heartedly, without worry and undue stress in our 'new normal' family.

All this said, 2015 was a pretty great year for all of us.   I have a very strong suspicion that 2016 is going to be the best year of our lives... so far!

Happy New Year to everyone!

Tatum the Kindergarten Kid!

It's been a little over a month since the kids went back to school and Tatum started school for the first time.
Riley and Peyton settled into school without a hitch and all indicators are pointing towards a great year for both girls...  social circles are happy and scholastically they are doing great!
Tatum started Junior Kindergarten at Beverley Street School on September 8th and is loving it.
For the first couple of weeks, I drove her to and from school but she is now a regular bus rider.
Letting her get on that bus for the first time was surprisingly difficult for me... I kept putting it off!  The first morning that Tatum went on the bus, Riley, Peyton, Tatum and I all sat on the front porch waiting patiently for the cute little yellow bus to pull up out front of our house.   When it arrived, we all walked Tatum to the bus, said hi to the other kids as I strapped Tatum into her car seat, gave her kisses and let her drive away with a perfect stranger (gasp).   My heart started aching the instant the wheels started moving.   As we watched the bus pull away, we all sat back down on the porch steps and I burst into tears.   Although I recovered with the help of Riley and Peyton, I spent the rest of the day missing my baby girl like crazy!   I couldn't get to her bus stop fast enough at the end of the day.   Little by little, I'm getting used to my alone time between 9 and 3:30pm... I'm lost but am working on finding my new path.

Waiting for the school bus!

Enough about me.   This is Tatum's Blog!
Tatum's kindergarten class is made up of 7 students, 1 teacher and 2.5 educational assistants.    All of the kids are beautiful and have a variety of challenges, just like our Tatum.   Some of them are already walking, others are working on it.  None of the kids are talking yet but they are all very good at making choices with they eyes or their hands.    I've had the opportunity to visit the classroom several times in the past month and it is a Kindergarten class just like any other... the kids play, have snack time, go the gym, go to the library, have music, do circle time, etc.    We are so grateful that Tatum was given the opportunity to attend Beverley Street School... it has exceeded our expectations in every way.   In addition to the typical JK/SK activities and curriculum, Tatum and her school mates have open access to the nearby AGO, gets weekly swimming lessons, is being taught to use the potty, is learning to feed herself, gets to attend a school music concert every Friday afternoon and gets regular hugs, kisses and snuggles from her teacher and EAs.
At school, Tatum continues to work on communicating using either her hands or her eyes and is given the opportunity to walk or crawl to get where she wants and needs to go.
Tatum's wonderful teacher Sabrina called us yesterday to let us know that Tatum had the BEST DAY EVER at school.    She was amazing at walking in her walker, made fantastic eye contact, smiled lots and walked up to the board and made some very clear choices.    It is so exciting to see Tatum with her peers, learning to play, learning to listen, learning to participate.
There are about 100 kids at Beverley school and although we've only been there for a month, we feel like we have been part of their community forever.   As we leave the building on days where I pick Tatum up, it is amazing to me that everyone says goodbye to Tatum by name!   The Principal, Vice Principal and teaching staff are all so warm and understanding - we are full of gratitude to have Tatum in their care.
All in all, Tatum is rocking school!   She needs to work on staying focused, present and communicating but we are seeing improvements each day.   Tatum's energy fades after lunch most days... it's really challenging for her to get those muscles all working together, so some afternoons are pretty tough for her.  This said, a good nap helps her pull it together until home time.  
Physically, Tatum is getting stronger and more organized every day.    She is able to crawl on her hands and knees everywhere on all kinds of surfaces and over obstacles.   She has pretty much stopped her old style of commando crawling and pushes up to crawl now.   Tatum's walking (with and without her walker) is improving in stamina, coordination and balance all the time.    In fact, she is doing so well that her teachers at the March of Dimes (Conductive Ed) are starting to work towards having her walk with canes instead of her ladder!  Go Tatum Go!

Tatum's hearing is still a big question mark.   We've had her wearing hearing aids (almost daily) since July but have not noticed a remarkable improvement in her hearing or responsiveness when they are in.   We have noticed that she hears better and is more responsive without the hearing aids in since July... perhaps the hearing aid helped to flip some switches?  Who knows!    With or without her hearing aids in, Tatum hears and loves music.    As soon as Chris picks up his guitar she immediately crawls over to him and positions herself right in front of the sound hole... she is for sure his biggest fan!

A Different Kind of Proud

It's been a while since I've updated the story of Tatum's journey.    So much has happened.    This past week I was literally frozen with pride.    I watched Tatum as our beautiful 4 year old girl and marvelled at her strength, courage, personality, and perseverance.   I literally could do nothing but smile and watch her.   I've felt similar grand moments of pride with Riley and Peyton as they've done something like learning how to ride a bike,  performing at the talent show, mastering a turn on the ski hill, etc.   With Tatum it is different... proud of them all, love them all to death - but it's different.

Here's the prelude:

Tatum participated in the March of Dimes Conductive Education camp for two weeks in the morning, ending last Friday.   Every day I would drop her off and she'd be very excited to go.   When we got to the door of her classroom, she would hug me tight and smile the biggest smile.   I'd place her on a stool just inside the door and she'd sit, with perfect posture, feet flat on the ground, no straps or harnesses, no back rest - pride.    

I'd then offer her a sip of her milk before I left.  She'd grab the milk container with both hand, put the straw in her mouth without my help and sip away while tapping her feet and fingers and truly enjoying her drink independently - pride.  

When Tatum was done her milk, she'd reach up to me and wrap her arms around my neck and pull herself into standing position all by herself.   She'd hug me and smile and melt my heart - pride.

I'd then turn Tatum towards her teachers and watch her walk into her classroom (yes - walk), willingly, confidently and with very little coaching -  so much pride.

All of these actions are taken for granted when we have typical kids.    It's pretty special to witness and appreciate these moments and to feel it all coming together for an incredible kid.
It was about 3 years ago when a doctor from Sick Kids Genetics told us of Tatum's likely genetic anomaly.    She said that kids with Pallister–Killian syndrome are very rare, so it's hard to say what the future holds.   There are only about 100 documented cases in the entire world.    She also said that most of the kids with PKS never sit or move independently and most of them do not speak.    I'm looking forward to making our way back to Sick Kids to add to their research findings with this video.... check it out!

https://youtu.be/MMhMFhgzSaY

Since my last blog update, we have withdrawn from the Institutes program entirely.  The program took us so far, now it is time to take another road.  It became more of a distraction in our life as a family than a positive focal point.    It was too difficult for me to manage the lives of the 3 girls, our family's needs and an 8-10 hour a day therapy program.    After taking time away from the program for 6 months, both Tatum and I realized what it felt like to live life and we both really liked it!    Tatum has flourished over the past 6 months in so many areas.    Being able to explore different environments, be around different people, being allowed to be curious and bored and trying new therapies have all been so beneficial.
We have continued to participate in monthly intensive treatments of Anat Baniel Therapy with Judy Cheng in Toronto.    Tatum loves it and continues to improve with each session.  
Tatum is crawling (still on her tummy) all over the house to get where she wants to go, usually dragging her puppy with her!   If Tatum sees something that she really wants on a raised surface, she is able to push into 4-point position, get into sitting and pull herself up into a kneeling position while holding onto something like the couch, the tub or her water table.    With each 4-point push up, I can see her balance, stability and strength improve and can envision her crawling around the house on all fours very soon.  

Tatum and Puppy (aka: her BFF)

She crawls over pillows, bolsters, toys, blankets, across carpets, concrete and astroturf!!   Her stamina and endurance continue to improve.
At the beginning of June, with the help of our friends at the March of Dimes, Tatum started the early stages of potty training.    We are seeing great success each morning as she wakes up, mid morning and intend to continue adding scheduled potty breaks to her day as time goes on.    I love her little grin as she sits and waits for me to discover that she's gone - she's as proud of herself as I am!
Some other big firsts have happened for Tatum over the summer break:

• watched her first feature film in a theatre with the whole family and loved it!   (Inside Out)
• learned how to drink from a straw - no more sippy cups or bottles!   
• swam in a pool with a floaty on and nobody holding her
• rode the rides at Centreville and loved them all (Froggy drop, Log ride, Carousel, Scrambler, Bumble bees)
• rode a pony without anyone holding her on (amazing core strength!)

At the end of July, we were introduced to a man named Mohamed Mohamed in Brampton.   He is a speech pathologist with a specialty in orofacial myology.    He helps people learn to use they face and mouth muscles effectively so that they can speak and eat independently.    Mohammed's treatment is intensive, as is anything that works!   We have seen him for 12 sessions over the past 3 weeks and are seeing great improvements with Tatum's swallowing, speech, facial expressions and facial sensitivities.

Normally, teeth brushing is a full contact activity with Tatum... we literally have to pin her arms down and stabilize her head!   Since seeing Mohammed, we have had regular success brushing her teeth while she sits on our lap!  She even opens her mouth for the toothbrush!   Before Mohammed, Tatum's tongue still had the 'thrust' reflex so when food was put in her mouth, her tongue would block the spoon and only go in partially.   She's now flattening her tongue and allowing the spoon in fully.    We'll continue to work with Mohamed to help Tatum improve her chewing and work towards consistent self feeding.

Tatum is experimenting a ton with sounds as well.    She mimics and babbles sounds like sssss, zzzz, da and ga regularly and has mimicked 'ca', 'pa',  and 'mum' while with Mohammed.

In addition to all of this great progress, we have seen that Tatum is smiling all the time.  She's always been a happy girl but now she can show the world with more ease.   I see Tatum stop and listen as Mohammed makes sounds in her ears.   You can see her mouth and tongue working to figure out how to make that sound herself.    It's amazing to see her joy when the sound comes out, just like she planned!    

As our geneticist told us, it is hard to tell what the future holds for a kid like Tatum.   I'm pretty sure, it holds a whole bunch of awesome!    We are all so excited to have Tatum more present, verbal and actively involved in our family life.    

Tatum starts school with the TDSB on September 8th in Junior Kindergarten.   Stay tuned for more amazing progress reports and of course, her first day of school photo.

Sweet Victory... covered in berries!

Yesterday was such a beautiful day for Tatum and I.  The morning started off a bit rocky... I wasn't feeling well yet was scheduled to have the occupational therapist over to help with Tatum's inability to feed herself.   I ended up cancelling because of how I was feeling but also because Tatum's self feeding wasn't going anywhere and I wasn't in the mood for a reminder of how little progress we had made in this category.  In any event, Tatum and I got to spend a nice quiet day together, just the two of us.   We played and crawled and walked and used the swing.   We did a bit of masking, which we hadn't done in a while and she really seemed to enjoy it!  We also used Tatum's choice board successfully for the first time in a while.   The day was definitely turning around - then came snack time.   I put about 20 raspberries in a bowl with some almond butter coating them for Tatum to eat.   As I've been doing for the past 6 months, I hold the spoon with food on it away from Tatum's mouth and wait for her to come and get it.   Normally she leans in and grabs the food with her mouth but today she grabbed the spoon with her right hand and jammed it into her mouth!   Sweet victory!!!   She repeated this action with every berry until her bowl was empty and her chair was covered and she was satiated!   I was in tears of joy... sobbing... proud.  
This action of Tatum feeding herself meant so much to both of us in so many ways.    It is such an act of independence to be able to feed oneself, to take care of yourself.   For me, it was also a step towards some form of freedom.   Currently, I spend an average of 2 1/2 hours each day feeding Tatum... to think that I will get that time back was overwhelming.   We are a long way from regular self feeding but we have made the first big step and Tatum is well on her way.
To continually do what feels like the impossible and then succeed with this beautiful child is such a lesson in patience, perseverance and humility.  

I can't believe it has been 5 months since my last update.    Our lives have been busy so say the least.  When we returned from Philly in May, we dove head first into preparing our house to sell it!   We staged the house, put it on the market and sold it - all in 2 weeks!  June brought all of the wonderful chaos that comes with end of the school year festivities.   July was filled with the final stages of packing, shuttling the older kids to day camps and finally a week away as a family to breathe!   On August 7th, we moved into our new Riverdale home and life began to make sense again.

When we were last at the Institutes in May, they asked we take a break from the program.  The break was suggested to allow Tatum more opportunity to crawl and communicate plus to give me a break.   Our break officially began on September 2nd when Riley and Peyton returned to school... although not much therapy was done between May and September because of the move.

Many people ask "How is Tatum doing?" and I am thrilled to say that the break from The Institutes program has been incredible for her.

On September 2nd, we committed ourselves to spending as much time on the floor as possible.   At the beginning on September, Tatum was crawling an average of 15-20m per day... always as a result of one of us motivating her to move with a favorite toy or her bottle.    By the end of September, Tatum had a record crawling day at 31 meters!   As of today, Tatum easily crawls 100+ meters per day and is constantly moving to meet her needs.   She crawls into her bed, over her covers and stuffed animals when it is bedtime, crawls to the fridge when she wants her bottle, the stove when she's hungry, the basement door when she wants to go downstairs to play with her sisters and the backdoor when she wants to go outside for stroll.  She crawls out of her room and into the bathroom in the morning when she sees the light on and hears someone in there!  Tatum crawls 4 meters straight to get to her swing in the far end of the basement... then she reaches up to grab it!   A few weeks ago, when our backyard was full of snow and Tatum was fully geared up in a snowsuit, she crawled across the backyard towards the shed where we keep her stroller... I'm guessing she was ready to get going!   Tatum is crawling everywhere, all the time, to get whatever she wants and needs.   Her crawling style is still on her tummy but she now uses her right leg to push herself along and occasionally uses her left leg too.    She has begun to use her open hands to change direction and and pull herself along as well... and often pulls her favorite toy (Puppy) along with her as she crawls these days.    It's amazing to watch Tatum's strength improve, her determination build, her independence grow and her personality flourish.  

We have introduced Tatum to a new form of therapy called the Anat Baniel Method while on our break from the Institutes.    We have done 3 separate weeks of ABM  since the beginning of October.

ABM focuses on helping Tatum's brain do its job better.  Through the application of gentle physical techniques that directly communicate with the nervous system, ABM helps the brain right itself and develop its ability to powerfully and consistently create new neural patterns that bring about successful solutions.   This is yet another amazing therapy form that works on the premise of neuroplasticity.

After 1 week of ABM, Tatum was a different child.   She figured out how to transition from sitting to crawling and is now very close to getting back into sitting from crawling.   Since starting our ABM treatments, Tatum's personality has come to life.   Her desires are very evident.  She is motivated to explore and get her needs met.   So many great milestones have been accomplished since starting  ABM:

• Tatum smiles and laughs all the time
• Tatum is motivated to move... everywhere, all the time
• Tatum is increasingly affectionate
• Tatum makes eye contact... all the time 

One remarkable gift came to us after starting ABM - Tatum became an amazing hugger.   Chris reminded me of something I said to him about 2 years ago,  just after we first learned of Tatum's diagnosis.   I had said "I  hope that we'll be able to hug each other one day".    This was one of many awesome two armed squeezy hugs today. 

One for Daddy too...

Tatum loves her ABM sessions.   She laughs and sings through every session as though it's a 45 minute play date.   It is a very refreshing feeling as a parent to know that your child is learning and progressing without frustration and discomfort.

The combination of Tatum's desire to move and explore (from ABM) and her opportunity to do so (from the Institutes) is enabling Tatum to flourish in many areas.   Her gross and fine motor skills are visibly improving every day.    She is able to pick up a variety of items with a pincer grasp and easily transfer items from hand to hand.    Tatum is able sit with beautiful posture, bum scoot, transition from sitting to her tummy and crawl, crawl, crawl... all by herself!!   With a bit of help, Tatum is able to kneel, pull herself into standing, cruise, stand for unlimited amounts of time and take independent steps with a walker.    In line with each of these progressions, Tatum's vocalizations are ever changing and improving too.    She makes many diverse sounds on a regular basis... sometimes babbling, sometimes yelling and sometimes singing.

We have decided to continue to take it easy (well, easier!) until January 5th, 2015.   As of January, our plan is to slowly get back into the Institutes Intensive program and give it a try again until we revisit the Institutes in May 2015.   In January, we plan to reintroduce Tatum's reading, math and knowledge programs, introduce her new balance (vestibular) and walking programs, reintroduce masking and introduce our new Oxygen program.   While working on this, I also hope to teach Tatum how to feed herself and start seriously working on weaning her from her bottle and potty training.    We've got our work cut out for us!!

The journey continues - we've set big goals for the next 6 months and we have no reason to believe that we won't achieve them!!

Merry Christmas and Happy New Year!