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.