Early Childhood Intervention

The one consistent message I've encountered over the past four years is: start therapy as early as possible.  I suppose this is even more key when dealing with a brain injury as the brain is more elastic when we are young.  Although it is not possible to "cure" cerebral palsy, (and by the way, it drives me nuts when people say that) the brain can "repair" itself and make new neural pathways/connections.  So for my daughter, other white brain matter can take over for the missing white matter in order to move/function the affected areas.

One of the ways this happens is repetition... you train your brain by doing an activity to teach it how it's done.  I often liken this to someone who's had a stroke, only they are re-learning what they already knew.  In T's case, she had to learn everything from scratch.

This brings me to one of the things that makes me sad/angry about the whole situation.  For every milestone that we reached like rolling, sitting or crawling (which isn't an actual milestone), she had to work probably 4-10 times harder than a "normal" child.  Don't even get me started on the walking thing - she's not walking yet but we're working hard on it.

<offside rant coming>

I just remembered an advertisement for the "Weekend to end Breast Cancer" that I saw at work in 2009.. here is a copy http://mo09.endcancer.ca/site/DocServer/9043_FundraisingFlyer_MO_ENG.pdf?docID=8842 (it wasn't this exact one)  I was shocked and appalled at what I read "BREAST CANCER IS HARD. WALKING IS NOT".  Really?  Really?  Okay, so I am definitely a breast cancer research supporter especially having it in my family but I really question who in the world came up with this one..  I even wrote a formal letter to complain and got no response.. nice.  Well anyway.. breast cancer is hard and walking is sometimes hard too,  just FYI. :P

<rant complete>

Where was I?  Oh yes.. intervention.  Like I said, we were referred to the Ottawa Children's Treatment Centre and assigned a physiotherapist, occupational therapist, speech therapist and a social worker to manage everything.  Although I was hesitant, at first, to see the social worker - we were lucky enough to see someone who was just about to retire BUT knew all the ins and outs of the system and funding options, etc. (I'll do a separate post on funding and resources)

At first she HATED going to therapy and pretty much cried every time.. we had 1 hour appointments bi-weekly with each therapist so it was pretty darn taxing on us (keep in mind we both had/have full time jobs so we would need to take time off work, go to the appointment and then drop her off at daycare before returning to work)  I'll probably do another post on work/life balance too as I'm sure that's killer for most folks (even without the extra challenges we face)

Physiotherapy in the early years was a lot of stretching, positioning and teaching how to roll and sit. One of THE best products I found to help your child sit (disability or no) was a boppy pillow.. not just ANY boppy pillow and certainly not a nursing pillow which encourages your child to lean and slouch against it.. it is fairly low and has an attached piece of fabric to prevent slipping.  I'll post a picture when I can.  Physio was the worst as it was scary and uncomfortable for her.. she would scream and look at me like "why are you doing this to me mom?"  It was awful.



Occupational therapy was always great fun.. in physio they work on the gross motor functions (read big movements) and in occupational therapy they work a lot on fine motor skills (detailed work using hands/fingers, etc.)  I remember when I was younger hearing about occupational therapy thinking that people went to see shrinks because they didn't like their jobs (hee hee) ;)  Occupational therapy basically helps individuals with "age appropriate" activities - so in a child, it would be learning how to play and manipulate their environment.. later it would be dressing themselves, etc.  She always loved going to OT unless a therapy ball was involved.. she still gets scared when she's off balance because she feels really out of control.

We also went to a speech therapist who referred us to take a course for parents called Hanen http://www.hanen.org/web/Home/tabid/36/Default.aspx.  I think this course should be mandatory for ALL parents as it teaches you how to communicate with your child and to encourage them to communicate with you.  It was awesome and T's speech just exploded after that.  I might do a separate post on Hanen because I have so many positive things to say about it.

Anyway, so T went to therapy bi-weekly with each therapist since she was 1 year old (she's now 4) so that's a LOT of sessions.  Each therapist would give us things to work on at home, goals to accomplish and report back on next time.  After hearing about some of the other options available, I'm SO thankful we went this route and were so directly involved from the beginning.  You really need to be involved in this process with your child.  Please don't outsource it as much as you can help it.. but if you can't, keep sticking your nose in and make sure your child is getting the best care possible.

The Diagnosis

So here is the single most important thing I'll tell you in this blog.. if you take nothing else from this, take my advice to make sure you get an ACCURATE and DEFINITIVE diagnosis for your child's "condition" IN WRITING!

I can't tell you how often we've needed a physician's letter or proof of diagnosis to even apply for services.  I know of other families who have had situations where the condition has not been discovered/defined and that children are WAITING for services because no one knows where they "fit".

Also know that even if you have a diagnosis - it can be changed later to be more accurate if you discover more as the child gets older.  Just get something written down so you can benefit from early childhood intervention.

Okay so - at around 6 months of age, I took T to neurology at the children's hospital and she had a clinical examination.. I told the doctor of her symptoms stating that I didn't think she had any symptoms relating to hydrocephalus but had almost ALL the symptoms relating to cerebral palsy (thumb in palm, scissoring legs, etc.).    He took one look at her and looked at me and said outright "yes, I believe she has cerebral palsy".  How refreshing!  I think he realized that I'd done all my research and wasn't afraid to hear the truth.  It makes me wonder if other doctors sugar coat things or are wishy-washy so as to cover their butt in case they're wrong...

Anyway, we ended up doing the MRI to find the source and extent of the brain damage.  When the neurologist presented the results, he said "good news - her ventricles aren't getting bigger, bad news - she's missing parts of her brain"  Sounds funny - but honestly it was a relief to know that we weren't in store for years of brain surgery and shunts.. but missing parts of her brain?  Seriously?  Seriously.

We stared at the MRI and, sure enough, gray matter - check.. white matter - hmmm, some missing.  Layman's explanation of brain matter: gray matter is where you do your thinking, white matter is what transfers your thoughts into actions (sending impulses to your muscles)  For whatever reason, (we still don't know) my child's white matter did not develop in utero which will make it hard for her to control some muscles in her body.  This explains why you see people with CP have jerky motions with their affected limbs.. think of it like a short in an electrical wire.. it works a little, then not, then works again.

SO - we had our diagnosis (in writing) and our neurologist (we love you Dr. Doja) referred us to the Ottawa Children's Treatment Centre where (after a few months waiting) we were able to start our early intervention program!

Here goes nothing…

Hi there – this is where I will detail my wonderful and wacky world raising a child with different abilities than the average bear :)