Hope

I wrote this story for a new book that Beverley Street School is planning to publish in the next year.   I thought I'd share it here too.

HOPE

We are a family of five with a Mom and a Dad and three beautiful daughters.   Our youngest daughter was born with a brain injury and a rare genetic disorder.    All three of our kids have a world of potential ahead of them.  

We didn’t know that our youngest child had challenges until she was about four months old.   It was during a routine check-up with our then pediatrician that our lives were ever changed with a handful of clinical, impersonal, descriptive words.    This was the beginning of our battle against what I call the ‘Hope Stealers’.   That day, the doctor came into our appointment and without any kind of ‘warm up’ said;  “Let’s get you set up with some appointments at Sick Kids”.    My heart dropped and I couldn’t breathe.   “Why?” I asked.   The doctor said, “Well, you’ve got what we call a ‘Funny Looking Kid’”.   Believe it or not, this is actually a term used in the medical community and it even has an acronym; F.L.K.   “What does that mean?” I asked looking at my beautiful baby.  The doctor proceeded to describe our baby girl with terms like floppy baby, bossy forehead, strange hair pattern, low set ears, long upper lip, upturned nose, strabismus, nystagmus, the list went on.   

Just like that, the way I looked at my daughter changed.   “What does this all mean for our baby?” I asked while sobbing, trying to catch my breath.   “It’s too soon to know but we’ll get a referral for neurology and genetics.  It should take about 6-8 weeks” and then he backed his way out of the room telling me that the office staff would be in touch with our appointment dates.     Off he went to his next appointment without looking back.

This doctor could have delivered the news of his suspicions to our family in many ways.   His choice of message delivery was to be ‘to the point’, emotionless, disconnected, and move on to the next patient.  This doctor stole the daughter we had known for the past 4 months, filled me with fear and questions and delivered her back to us as a ‘funny looking, floppy kid’ that had some big problems ahead of her… but we’d have to wait 6-8 weeks to start finding out what they were!  

I cried all the way home, trying to reach my husband by phone to deliver this news.  Surely, at some point during medical school, doctors must be taught how to deliver sensitive information about a patient to family members.    If so, I am fairly certain that our pediatrician missed that class.    That appointment and the doctor’s choice of words changed our world in a matter of fifteen minutes.   We still had three daughters whom we loved very much but one of them was now abnormal with some big challenges and a mystery medical condition to uncover.  It was uncertain what she would be capable of or how she would develop.   Boom.   Hope stolen.  

Our journey to uncover our daughter’s challenges continued as we met with a neurologist at Toronto’s Hospital for Sick Children.   Our first diagnosis was a brain malformation.   Refreshingly, we were told to have both parents present when the neurologist reviewed our daughter’s MRI results with us and it was suggested that siblings stay at home – regardless of the news that was to follow.   When we asked our neurologist to put this initial diagnosis into a prognosis, he said among other things,  “your daughter has a 25% chance of developing seizures by the time she is 4 years of age”.   Although more positive and supportive than our pediatrician, the neurologist could have worded his prognosis differently as well.   If perhaps he had told us that she had a 75% chance of never having a seizure, he would have left us with more hope and less worry.

After the neurologist, we met with the Geneticist at Sick Kids.   Her diagnosis was that our daughter had a very rare genetic disorder.   To her knowledge, there were less than 100 people in the world with this syndrome.   When asked “What does this mean for our daughter?” she said “It’s hard to be sure but what we know is that most of these children never talk or sit independently and many have heart and kidney disease”.   Boom.   Hope stealer.  

At the age of two, we were told that our daughter would need surgery to correct her strabismus (wandering eye) because it would not correct itself.  At three, we were told that she would need AFO’s (foot/ankle/leg braces) “for the REST of her life”.   At the age of three and a half, we were told to get our daughter a wheelchair for her mobility because it was unlikely that she would walk.   

Each year, we visit our developmental pediatrician.  After each appointment we receive a letter in the mail summarizing the outcome of the appointment.   The letter always starts out by describing everything that our daughter is challenged with and listing her numerous diagnosis.   I dread receiving the annual letter – it sinks me emotionally.   It would be so amazing if the next letter we received from our developmental pediatrician celebrated our hard work and my daughter’s fantastic progress before listing her challenges. 

Over and over again, our community of medical support tries to lower our expectations.   I’m not clear on why, but I imagine they are protecting themselves from liability and possibly trying to protect us from disappointment.   I don’t really care why, but they need to stop stealing the hope that fuels us to do better, be better, feel better.   They need to think before they speak and realize the impact of their words on their patients and the parents who view their children as perfect just as they are.

We decided very early in our youngest daughter’s life to hold onto our hope and never let anyone take it from us.   As a family, we believed that she would be happy and healthy and that she would sit independently and crawl.  We continue to believe that she will communicate with us, learn to read and speak and walk on her own.    We are ever hopeful.

We believe that you have to work hard for the things you hope for in life.   It is hope that drives motivation, determination and perseverance.   There are no sure things in life, but you are far more likely to achieve your hopes and dreams if you believe you can than if you have no hope.  There is no such thing as false hope.   Hope keeps us going when times are challenging; hope helps us see through to a brighter future.

Our youngest daughter has just turned five.   She is happy and healthy and does not have heart or kidney disease.   She has NEVER had a seizure.   Her wandering eye corrected itself.    She sits independently, transitions independently, crawls, rolls, pulls herself up on things, moves non-stop and is able to stand and walk while holding our hands (without AFOs).  She is starting to feed herself and holds her own cup when she drinks.  She knows a few words in sign language and makes choices with her eyes and occasionally her hands.   We have taught her to read over 2500 sight words and are working on finding a communication device to help her find her voice.   We are very hopeful that she will one day speak her own words.   She is funny, loving, stubborn, determined and smart.

For a short period of time, we allowed ‘the experts’ to steal our hope, limit our expectations and mold our beliefs.   We let them hold the power and momentarily shape how we saw our youngest daughter physically and developmentally with their statistics, descriptions and scepticism.   Thankfully, we listened to our hearts and looked into our baby’s beautiful brown eyes and saw nothing but hope.   We found the strength within our family unit to help her chart her own path.   We believe in her and have all the hope in the world for her life ahead.  

Today, five years later, we are a regular family with three beautiful daughters, ALL of whom can do ANYTHING they dream of with their lives, fueled by HOPE.

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

Event Home Page
My Personal Page

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!

Back at the Institutes!  Visit # 5

We are back in Chestnut Hill, Pennsylvania at The Institutes for Achievement of Human Potential.  This is Chris's and my 5th visit and Tatum's 4th visit.
We are at the Institutes for 5 full days. Today was spent at the clinic being 'assessed' in every way possible.
Tuesday and Wednesday Chris and I spend in a classroom for 9 hours each day.   We will learn about everything from 'How to Grow the Integrative Areas of the Brain' to the 'Study of Seizures - why they happen and how to prevent them'.   The lectures are always very enlightening and inspiring. Tatum will stay with a nanny while we are in class.
On Thursday and Friday we will return to the clinic to be taught our new program.

Our assessment today was fantastic.  Tatum's report card was A++.   She made excellent qualitative and quantitative progress this period.   Overall her growth rate compared to before beginning the Institutes' program is EXCELLENT!

In the last 6 months Tatum's neurological age increased by 6 months!  This is a first for Tatum!   Her growth rate for the last 6 months is 100%!!!    Since our last visit to the Institutes in November of 2013, Tatum's rate of change is 204%.
When we began visiting the Institutes with Tatum in September 2012, Tatum was 13 months old but her neurological age was only 6.4 months.   Her growth rate was 49%.
Since starting our program with the Institutes Tatum's overall growth rate has increased to 87%., an overall rate of change of 178%... so amazing.  We continue to catch up!

Today, Tatum is 35.4 months old... almost 3.    Our assessment rated Tatum's neurological age at 25.72 months - WOW.    Tatum, you are a star.

The Institutes considers 6 different competencies when assessing a child's neurological age.   Below is Tatum's personal competency summary:

• Tatum reads with total understanding (Visual competence)!    The average child can do this at the age of 6 years.  Tatum received an 'Understanding Victory' for this accomplishment today which means that she is at the top of the Institutes' developmental profile in this competency category and that she is performing above her age in 'understanding'.
• Tatum has an understanding of at least 2000 words and simple sentences (Auditory competence).  The average child can do this at 3 years of age... we love being average!
• Tatum is able to determine characteristics of things by tactile means... for example she knows the difference between a bean and a soother by feel.  The average child can do this at the age of 3 as well.  (Tactile competence)
• Tatum is able to move her body in prone position (on her tummy).  The average child can do this at 2.5-5 months of age.   We have been stuck at a newborn level in this category for 2 years so to move up in the Mobility category is a huge victory for Tatum!
• Tatum is able to make at least 2 words (but less than 10) of speech used spontaneously and meaningfully.   In the past 6 months Tatum has regularly said 'hug', 'all done' and 'up'.   This adds to the word she was previously saying which was 'Dada'.   (Language)
• Manual competence is still a work in progress but Tatum is getting closer to picking up things in a pinch!

Being back here is motivating and inspiring for Chris and I and it always fuels my fire.   The affirmation that Tatum is progressing in a very positive way makes me want to keep at it!   Seeing the other children in the program beating all odds is mind blowing.   Today we met a little boy who is likely 12 years old crawl his way from the front door to his seat.   He crawled with a smile on his face and was so determined!   We also witnessed him speak fluently in English, French and Spanish!  Another little boy was very off balance 6 months ago and his eyes constantly flickered back and forth... today his eyes were perfectly straight and bright and his balance was incredible!   Today was a good reminder to me that it is not time to pack it in... it is a good time to find the strength and energy to keep driving towards healing Tatum and helping her be the best she can be.

Tatum has been finding great joy in 'cause and effect' activities lately... this was on our drive home from the Institutes today.   Very appropriate!    Yay Tatum!

https://www.youtube.com/watch?v=tNRhkdZNvWg

Spring Shift

Tatum is saying HUG and reaches up with her arms to be picked up and held.   What an amazing gift.   About 12 months ago I started longing for Tatum hug me and hoping that one day she would.   Today she is able to hug so tight it excites her!    The crazy thing is, now I want more.  I want more from her, more for her.    Don't get me wrong, I love the hugs.   I never want the hugs to stop.    Today I long for Tatum to crawl with strength and endurance everyday until she gets up and walks.     Not too much to ask for?   I just wish I could reach a point where I am totally content with how Tatum is today and know that every day that follows will be okay and probably even better.

Tatum started crawling (military style) on February 22nd - that was our 9m day.   Since then she has crawled every day... sometimes 1m, sometimes 5m and sometimes even 10m.   Her crawling has changed over the past month and a half - she is getting her bum in the air on occasion, she is even sometimes pushing up on straight arms, she is beginning to push with both legs and pull with open arms from time to time.   Crawling for Tatum is so difficult but she is doing it and every day is better than the last... even when she refuses to crawl more than a meter.  

Wanting Tatum to crawl with strength and endurance every day IS asking for SO much from her. This week she has been teething and is working through some growing pains in her hips so this week, all she wanted to do this week was stand up tall and roll over any time she was on the floor.   Again - totally crazy but rolling over and standing are two things that I used to long for her to do but the fact that she wouldn't crawl this week really got me down.   I am searching for contentedness!  Can anyone point me in the right direction??? This week has left me feeling like I need a break, she needs a break and wondering how long the two of us can manage our crazy schedule.   Sigh.   Next week, when she starts crawling again I'll stop feeling defeated and start celebrating again.    I am truly losing my mind in case anyone was wondering.

 We are doing some things differently these days... I think it is Springtime that has brought many of these changes about.   We need a change, we need to lighten things up!  We are spending lots of time outside and it feels so good... even though it means cutting into therapy time!   Today, we took all three girls and three friends to the corner store to get popsicles (Tatum had her almond milk, no popsicles for her yet).   Tatum sat up tall in her stroller and grabbed her bare toes as we rolled along.   She was so happy.  She makes this crazy voice that sounds like an Australian Didgeridoo.   Google it and you'll wonder how she makes the sound!   Anyway, she had full conversations all the way to the corner store in her 'crazy voice'!

We've started doing swimming lessons with Tatum.   She kicks her feet and pulls her arms through the water - she loves swimming!   It comes very naturally to her.   It's amazing how well she floats and trusts that she is ok in the water.   The joy I have felt swimming with Tatum over the past two weeks is so pure and so wonderful, I know she is feeling this same joy.  Riley and Peyton love watching Tatum learn to swim and I love watching them get so excited with every new experience she has.  

We've also started a new Mom and Tot class every Friday morning run by the March of Dimes.   This class is therapy, but it is different.   It's called 'Conductive Education' and the therapy is focused on helping the children they work with gain independence in all aspects of life through song and play.    I've only attended two classes with Tates so far but I have cried tears of joy at each session - the first time I cried simply because we were playing.   Tatum is almost 3 and I realized that day that we have been too busy with therapy to actually play.  The second time I cried watching Tatum finger paint.   I thought she didn't like wet stuff on her hands, but she loved finger painting.   The CE conductors are working with me to help her learn how to drink from a sippy cup, use a a potty, crawl, walk, climb and play.   It really feels like a great place to be right now.  The March of Dimes is currently working on turning the facility where we attend these classes into a private school for kids like Tatum who learn differently.   It would follow the Ministry of Education's curriculum but it would be taught to the kids in a way they could truly learn.   Daily Conductive Education therapy would be part of the curriculum as well.   We are hopeful that they are successful in establishing this school which is proposed to be a JK to Grade 6 school   It would be a great option for Tatum and it is only 4km from our house!

Interestingly, as we've started doing all of these new things, Tatum has started acting her age in many ways!   Ohhh, the tantrums she has thrown!   She is laughing more, smiling more, playing with us so much more.  She is stronger in mind, body and spirit.   

The question Chris and I have now is, "How do we do the Institutes' program, the Medek therapy that we have been doing, this new Conductive Education Therapy AND have a life?".  Something truly has to give or we will all crack.

We head back to Philly for our 5th visit and we are hopeful that we will be inspired enough to keep holding on and working hard.   Tatum is doing so well and has come so far.   We know this is largely due to all of the work we have done through the Institutes' program.   We are afraid to quit, but we are afraid to keep going at this rate.  

So many questions.

Thanks for reading and listening to me vent... apparently I had a few things to get off my chest!

Below are a bunch of photos from our winter, which was pretty awesome!  Also attached is a great video of our amazing girl in action.

Tatum is Groovin for Movin!

Last night, Peyton and I had a sleep over... this is when I get to share a tiny corner of my big bed with one of my beautiful children wrapped around me in snuggling bliss!   When we woke up, Peyton looked at the clock and it was 7:11.   Apparently, when it is 7:11 you MUST make a wish - so we did!   I wished that Tatum would crawl today and watch the video on YouTube to see what happened!   Click on the link below.
Don't mind my incredibly excited/happy tear filled voice in the background!   Today Tatum crawled close to 10m over the course of the day... huge victory for Tates.    I am so excited to see what we can accomplish tomorrow.  

http://www.youtube.com/watch?v=D5gC0qEX5B8&list=FL2ryKziHg9EVCrhPjruePLg

Yesterday, Tatum and I went to Sterling Hall School to thank a group of grade 6 boys for creating homemade books for Tatum's reading program.   We were blown away to have received over 50 beautiful books made with such care, creativity and attention to detail.   Tatum and I were invited to sit with the boys in their library where we talked about who Tatum is, how her brain is different, what we are doing to help her get well and so many other topics.   The boys had many questions that sparked great conversations.   We also discussed how it feels to be different in typical world and the fact that many people stare and wonder when they see someone who acts or looks different.   I asked the boys to consider the most polite way to enquire about what they were wondering and then ask instead of staring.
The afternoon left me and Tatum feeling supported and understood.  
Although the purpose of our trip to Sterling Hall was to thank the boys, I think what the boys did for Tatum felt good to them... it seemed as though they were thanking Tatum for the chance to help her.   What a lovely day.

Tatum's development has taken a huge positive turn since late November.   She is so interested in moving her body.   When she is being held, she is able to move so that we know how she wants to be held... facing in, facing out, snuggling, etc.    She is also crawling (inchworm style) anywhere between 6 inches to 2 feet each day.   It really just depends on how much time she has on the floor.   If she is on the floor these days, she is moving!    She can turn herself completely around in a circle and she can move herself forward by pushing with her legs (bum in the air) and then pulling with her arms.     Inch by inch, she is finally moving!!!  
Tatum is also standing very strong and tall with very little support.   She is able to push herself into standing from my lap and remain standing for minutes while holding onto a table or my hand.   Recently she has begun taking the occasional step (with a bent knee now less) without any coaxing from us.   She is still supported but her legs want to move!!!
Tatum's babbling is constant and loud!   Sometimes she just won't be quite!   I have been known to pop in her soother just so I can get a word in!   She is making new sounds every day and we are uncovering the words within her sounds as well.   We know the sound for hungry is 'un',  Daddy is 'dada', up is 'uh' and the list goes on.    Tatum and I are getting better at using her facilitated communication board together.   So far she has spelled out for me:   book, yes, milk, seasons, summer, carpet, eat, walk, bits, read, bottle and hungry.    She is truly remarkable.   She has also begun looking at things to get her point across.   For example, she stares at the door each morning until I tell her who is coming to help out and stares at it at night until I let her know when Daddy will be home.  
We are all so proud of Tatum.  Riley and Peyton constantly share Tatum's accomplishments with their friends and share in the joy of each new sound she makes, inch crawled, step taken, whatever.   I love that we are teaching our kids to celebrate everything without it having to be a parenting lesson... it feels fantastic for it to be so organic.

HOPE, PATIENCE, BELIEF AND PERSEVERANCE

We've just returned from our biannual visit to The Institutes for Tatum's second re-evaluation.   Leading up to our visit, I was beat... physically, emotionally, motivationally - I was done.  I just wanted a normal life and a few moments of rest each day.

We had all worked diligently with Tatum for the past 6 months and Tatum still wasn't crawling.   Tatum was doing so many new things - so many great things - but her motor skills were still greatly delayed.   

We arrived at the Institutes on Monday November 11th.   The clinic waiting room was filled with 20 families from all over the world... Guatemala, Sweden, Australia, India, Germany, the U.S. and many more.   Looking around the room, my 'I'm done' attitude began to change.   All of the 'hurt kids' that I recognized were better in one way or many ways.   They all looked healthy and they all had parents with them who believed in their potential so much that they travelled from far and wide to help them reach it.   The room was literally full of love, hope and inspiration.

I realized that in my moments of weakness, I had begun adjusting my belief in Tatum's potential.   I had stopped truly believing that she will walk and talk one day.   I had lost sight of the forest for the trees.   I  was happy about her other progress but I wasn't celebrating it as it should have been because she was supposed to be crawling.    I had neglected to consider that this sweet two year old had broken her femur 7 months earlier and had to rebuild a bone while we were asking her to find her legs, develop her muscles and ligaments and hip sockets.   Sigh.

I'm writing this blog entry to officially celebrate  Tatum's many victories over the past 6 months.

• Physiologically, Tatum is in perfect health.   As with each visit, we are asked to do a myriad of tests including blood, stool, urine and hair analysis.   Tatum's blood, stool and urine results were all normal... and not moderately normal - perfectly normal!   Tatum's hair analysis showed that we were able to flush out most of the heavy metal build up she'd been battling... by feeding her a tablespoon of fresh cilantro each day.   Physiological healthiness means that Tatum is more easily able to get through her very intensive days of therapy.   We saw this in her increased energy levels, improved respiration (boy is she loud!), increased awareness and responsiveness and her 90 days of perfect health.   
• Intellectually, Tatum is doing exceptionally well.  
• She is reading at a 6 year old level and was able to clearly show us that she is comprehending what she is reading as well.   Tatum knows over 2000 words by sight and has been read over 80 homemade books to date.   She loves reading books of all kinds and has clearly told us that her favourite books are about herself and her family.
• We have shown Tatum over 200 'bits of intelligence' which are essentially flash cards.   She is able to recognize and differentiate between the bits.   It's believable to know that she can tell the difference between Fred Flintstone and Scooby Doo but it's remarkable to know that she also knows the difference between an image of John Diefenbaker and Paul Martin or a Dalmatian and a Retriever.
• Communication continues to improve through our use of a 'choice board'.   We are able to ask Tatum simple questions and offer her a collection of possible answers for her to point to until we determine her need or want.   We were introduced to 'facilitated communication' during our last visit and it is blowing our minds!   Tatum has a paper keyboard and is spelling out her answers by pointing to the letters on the keyboard.   Because her motor skills are still under-developed, she relies on me to lightly support her hand and point her finger.   When asked a question, Tatum is unmistakeably directing her hand to answer.   So far she has clearly spelled:  pink, avocado, playground, book, season, and summer.  It is amazing to me that we now know her favourite colour, favourite food, favourite place to go, not to mention what she it thinking about in a given moment.   Mainstream practitioners recently told us that Tatum would not be eligible for any facilitated communication devices until she was 6 or 7.   It sickens me to know that some parents are having to wait so long to communicate with their children.   We are so fortunate for this gift.
• While at the Institutes we were reminded that all sounds are language and that we should respond to Tatum as though we understand that she is speaking to us.  Since putting more focus on this area, Tatum has increased her babbling and now has 3 words of recognizable language... Dada, Ba (basically means she wants to eat or drink) and at long last, Mama (sometimes Mum).
• There is cause for celebration in Tatum's motor skill world as well.   She has become increasing skilled at grabbing and pushing away items as she sees fit.   She is also moving really well on her ramp.   50% of the time, she is pulling herself all the way off and moving a bit on the flat floor.   While working with the Institutes staff we believe we know what we need to do to increase Tatum's mobility and get her crawling.   It appears as though she has the strength, motivation and energy to crawl but she seems to be missing two things:   coordination and a consistent awareness of her legs.   What I love about about the Institutes program is they never throw up their hands and say 'oh well'.   Instead we are going to help Tatum find her legs by building her a standing device.   She will stand upright for 30 minutes each day.   We are going help Tatum's coordination by doubling the amount of crawling patterning we do each day for at least a month.   She just needs more time to receive the patterning.
• Overall, Tatum is progressing 167% faster than she was before we started our program with the Institutes.   She is currently developing at about 80% of the average child.   We are at a bit of a plateau as far as motor skills are concerned but we believe that we will have a crawler by Springtime...  I've asked her to start crawling as my Christmas present but I'll also be OK with a new "World's Best Mom" coffee mug!

This is Tatum's blog and I find myself mostly writing about Tatum and myself but I need to be clear that what Tatum is accomplishing would not be entirely possible without Chris, Riley and Peyton and our loving volunteers.   In our house, Chris (Dada) is the first one to get smiles and giggles from Tatum... always has been.  He brings her into our world with music, play and snuggles.   Riley and Peyton truly adore Tatum.   They greet her in her bed each morning with kisses and hugs.   Both girls practice their own reading with Tatum and are becoming exceptional teachers for their baby sister.     Riley and Peyton will become increasingly involved in Tatum's program in the coming weeks and are excited about learning how to pattern and motivate her to move down her incline ramp.   Riley's grade 3/4 class will be writing some holiday books for Tatum in the coming weeks too!  Our volunteers make Tatum her books and show up to pattern every day without fail.   Thank you all.

I write this blog mostly to help myself remember the good times and that we got the tough times.   I also find that it helps me realize how far we've come.   I'm pleased to share our journey with anyone who chooses to read along.   If you have any thoughts that you want to share, please feel welcome to do so.   I will share anything you like with Tatum and am open to receiving your ideas and suggestions.     Apparently this blog makes it difficult to share your feedback.    Please email me at kimberly.reain@gmail.com if it is easier.

As we wrap up November and the Holidays approach, I'm sure I'll be too busy to write much until 2014.   Happy Holidays to everyone.    Remember to live in the moment and be joyous about today.

I'm signing off with a promise to myself, my husband and my 3 girls.    

• I promise to always be on your team.   
• I promise to always believe in you and your potential.   
• I promise to never give up on you - ever.