Thursday, 20 March 2014

Forever Changed

This blog post has been a long time coming.

So much has changed since my last post. My view of disability is forever changed.  My view of T21 is forever changed.

The last time I blogged, I was sitting at the Calgary Airport waiting to board a plane. We were heading to Philadelphia,  to visit the The Institutes for the Achievement of Human Potential.

We took a course called "What To Do About Your Brain Injured Child".  It was an intense 5 day course. Each day was about 12 hours long.

Outside of  The Institutes the day before our course.

We learnt A-LOT! Way too much to fit into one post.  Way too much to even be able to properly explain to you, but I will give you a few tidbits. Parts of the course that really stand out for me and that I remember without having to re-read all my notes.

Some of you may be saying "Brain injury? Stella has Down Syndrome, not a brain injury."  Stella's brain is injured due to the fact that she has Down Syndrome (or Trisomy 21).

Tidbit #1:  There are 3 kinds of brain injury:
                                 Born with different brains/deficient brains. Stella has T21. Her brain is different.
                                 Born brain injured. This happens either in-utero or at birth.
                                 Psychotic: This type of brain injury is not very understood.

Tidbit #2:  There is NO relationship between brain injury and intelligence.  There is however a correlation between brain injury and the ability to express intelligence.
                 This was HUGE for me! It made and still makes so much sense.  Stella is so intelligent.  I could see it in her eyes before I knew anything about The Institutes! I can still see it in her eyes!  But her brain injury is getting in the way of her being able to express that intelligence.  But wanna know the awesome thing? At this course we learnt how to help fix her brain so that she CAN express her intelligence! We were given knowledge so that we could organise a game plan….a program to help Stella.  Wanna know something else?? The program is working!! 3 months into it and I can see a difference!

Tidbit #3: The brain injured child has two enemies: TIME and GRAVITY.  Every day that a brain injured child is not better he/she is worse.
               When Stella was 6 months old she was about 1-2 months behind her typical peers.  Every day since then Stella has gotten worse. She has fallen farther and farther behind her typical peers. Time has been her enemy. Now that Mickey and I know better, we are in an uphill journey to help Stella to catch up.  She's an athlete let me tell you!! And it is paying off!

Tidbit #4: The brain grows by use. The brain grows in the same way muscles do.

Tidbit #5: Teaching your child to read is the most important part of the intellectual program you do with your child.  Why?
                          Reading is easy.
                          Reading grows the brain. It stimulates the visual and auditory pathways.
                          Reading is a neurological function not an academic subject.
I have found that teaching Stella to read has been a huge factor in her starting to say more words.  She loves her flashcards! And trust me, when she doesn't like a word, I can tell! She'll walk away, or look away or shake her head. When she does that I put the word away or rip it up.

Tidbit #6:  If you are going to start a neurological program, begin with nutrition!  Good nutrition is the foundation of the neurological program.
                  Dairy and gluten were two of the major food sources that we were encouraged to eliminate. Dairy lowers the functions of the immune system. Gluten is highly GMO'd, plus kids with T21 have a higher sensitivity to gluten also.  We had already started eliminating both of these before the course, but now Stella is 100% (food wise) dairy and gluten free. I have found that she is way less "snotty" when she gets a cold and I attribute that to her being diary free.

Those are some of the main things that stick out for me, but trust me, there was a whole lot more!!

We learnt the importance of a physical program.

Crawling and creeping are important components of the physical program.

Crawling is better known as a "belly crawl" or as I used to call it "the wounded soldier crawl".  Creeping is when you move on your hands and knees.  A proper crawl and creep is essential for growing the sensory pathways and visual pathways.  Stella did not crawl nor creep in the proper cross pattern way.  Therefore crawling and creeping will be apart of her physical program.  I say that it "will" be apart of her program as she currently isn't "sold" on going back to creeping.  So right now we are focusing on walking.

Yes, Stella knows how to walk, but the goal of a walking program is to build endurance, and bring more oxygen in to the brain.

We go to the mall daily and walk.

She has become quite well known there.  The people that work there will say good morning to us and Stella will wave and say hi. It's very cute.

Stella's stamina is increasing and her energy has increased! This girl is on the go now…all…the….time!! I look forward to when we move into a running program! What a great incentive for us all as a family to take on a family 5k run….or a marathon perhaps is in our future!!

Hanging is also a part of Stella's physical program.  Hanging as in hanging from a dowel with feet off the ground.  Why? Well this is a precursor. Once Stella can hang for 20 seconds we can then move into brachiating… in swinging across on an overhead ladder (aka Monkey bars).

Why? Hanging and brachiating create hand and upper body strength.  Hand strength helps with fine motor skills like pincher grasp, opening and closing lids, holding a pencil properly and learning to write.

Since Stella has begun her hanging program her pincher grasp has improved immensely.  She has gone from using her pincher grasp occasionally to using it all the time.  The other day she picked up the teeny tiniest crumb up off the floor and gave it to me. Upper body strength from brachaiting opens up the chest. A stronger more open chest means deeper stronger breaths, which means more oxygen to the brain.

Aside from a physical program and teaching Stella to read, we have been doing "Bits of Intelligence" cards with her.

What is a “Bit of Intelligence®” Card?
A Bit of Intelligence card represents one bit of information. It is made using an accurate drawing or a high-quality photograph that is large and clear. Bit of Intelligence cards are organized into categories, which allows a child to generalize about each category and relate one category to another.
She LOVES them! All my girls love them. Stella learns them fast!!!!

That pretty much sums up what we are doing with Stella currently. We do this program every day. Stella enjoys her program. There are days when she just isn't "up to it". Days like that we take a break.  The whole goal of the program is for it to be enjoyable. Days where it seems like it's not..we take a break.

It's working.

We have been doing this program for 3 months.

We are seeing changes in Stella.

Her words spoken have gone from about 8 to over 20. She also says couplets (as in two words together), not just single words.

This….is… HUGE!!!

All of this has happened since starting the program.

Seeing these improvements proves to me that we are on the right track.

I am eternally grateful to The Institutes.  

I can't wait to learn more and to see Stella grow and thrive and and jump over every obstacle that has been put in front of her.

Stella, you are my sunshine.


  1. This is great! Thank you for all the insight and knowledge! I am going to sharer his with my husband..thank you! Smiles

  2. Wow, this was great! Interesting about the foods you cut out. I have read things on gluten not being so good, but not dairy. Russell is huge on dairy! He is such a picky eater that I would be scared to cut it out. But it's worth looking into. I'm glad you shared all this, there are some pretty amazing tidbits in here!

    1. Yes! We learned a lot!! We cut out dairy before the course and I noticed a decrease in snot when she had a cold plus just a general decrease in congesting all together.

  3. Hi Anna! I have a quick question for you! I was wondering if you could email me when you have a free moment. Thanks! I hope to hear from you soon. :-) hvsj12 at gmail dot com