Funding Resources

One of the first things our social worker mentioned to us was sources of funding..  Funding for what?

Honestly, we were so embarrassed asking anyone for anything that we didn't fill out the forms.. our social worker filled it out for us.  The first thing was Special Services at Home (SSAH) http://www.children.gov.on.ca/htdocs/English/topics/specialneeds/specialservices/index.aspx from the Ministry of  Community and Social Services.  This is flexible funding that can be used for a variety of things such as hiring a care worker to help you in the house or just respite services (meaning just give the family a BREAK)

I told the social worker - we make okay money.. we don't *need* to get funding.. she stopped me there.  She said, you have no idea how much more money you will spend on your child than the average parent.  Think about all the additional expenses you will have in terms of equipment, daily living aids, specialized clothing, activities requiring you to hire a personal teacher or helper (i.e. her own gymnastics teacher instead of being in a group class) 

I typically HATE using statistics if  I don't know where the sources are from and what the methodology is BUT the Canadian Council on Social Development tells me that it costs an average of $166, 549 to raise a girl to age 18 ($166,972 for boys who eat more)  http://www.ccsd.ca/factsheets/family/   So that is roughly $9200 a year to raise my girl (yes, I'm rounding down - just go with me) 

In contrast, the added cost (above and beyond the average) to raise a disabled child in Canada can be upwards of $8000 a year.  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1802121/.  So that would put the grand total up to $310,549 for 18 years.  I've read other articles that estimate the cost to be 3-4 times average, so that would be in the $500,000 - $660,000 range!

I certainly don't have that kind of dough lying around in my back pocket...

Okay - so I can't help but plug my organization but Statistics Canada has a publication and data tables from 2001 on Children with disabilities and their families http://www.statcan.gc.ca/pub/89-586-x/index-eng.htm.  Let's talk about the opportunity cost of caring for a child with a disability.  Statcan mentions a few reasons why the child may have an economic impact on a family - things like; parent working fewer hours, changing their work hours, not taken a job in order to care for the child, quit working, and turned down a promotion or a better job.  In some cases, the parents need to devote their entire lives all day every day to caring for their children - how are they making ends meet?

So how does the Canadian government help? Well there is:

• Disability Tax Credit for which you must fill out the Disability Tax Credit Certificate http://www.cra-arc.gc.ca/E/pbg/tf/t2201/README.html.  Do this as SOON as you get your diagnosis as it's a pre-requisite for a lot of other services.  The credit on the tax return is a huge benefit - very worth while.
• Medical tax credits. http://www.cra-arc.gc.ca/E/pub/tg/rc4064/rc4064-e.html#P193_7724  You can deduct medical expenses (up to $10,000 per dependent) and can even claim moving expenses if you are moving to a more accessible home.
• Child Disability Benefit (CDB) http://www.cra-arc.gc.ca/bnfts/dsblty-eng.html is a tax-free monthly payment per child (up to $205.83 per month depending on family net income)  Once you send in the tax certificate mentioned above, this will be sent to you automatically.  As an aside (and kudos to my government - thanks guys) I didn't send in my daughter's form until she was 2 and they sent me a cheque for all the money I would have received since she was born.  That rocked.. thanks Canada.
• Registered Disability Savings Plan (RDSP) http://www.cra-arc.gc.ca/tx/ndvdls/tpcs/rdsp-reei/menu-eng.html is 
• Canada Disability Savings Grant is new program where the government will match your investment into the RSDP as follows: The amount of the CDSG is based on the beneficiary’s family income as follows:

• 
  
  
  

  Beneficiary's family income	Contribution	Grant	Maximum
  $77,664* or less	On the first $500	$3 for every $1 contributed	$1,500
  	On the next $1,000	$2 for every $1 contributed	$2,000
  More than  $77,664*	On the first $1,000	$1 for every $1 contributed	$1,000

• Canada Disability Savings Bond is where the government will contribute to the individual's RDSP if their family income is less than $21,816

There are many other sources of funding - one that we use very often is the Ontario Assistive Devices Program or ADP http://www.health.gov.on.ca/english/public/program/adp/adp_mn.html.  They will pay a portion of the device (orthotics, prosthetics, walking aids, wheelchairs, etc.)  You would then submit the remainder of the cost to your insurance company (if you were lucky enough to have that through your work or otherwise) or pay out of pocket.

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.

Cerebral Palsy Family: Mistakes People Make

Cerebral Palsy Family: Mistakes People Make

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!

In the beginning

So, our family’s story begins in 2006 (well, much earlier than that – but for the sake of this blog, let’s go with 2006) when we were expecting our first child. I desperately wanted a baby girl with blonde hair and blue eyes. I have almost black hair and brown eyes so I knew it was a long shot but I figured I’d at least put it out into the universe. Anyway – so we went for our 18 week ultrasound and BINGO – it was a girl! YES! But wait.. they found an isolated echogenic intracardiac focus on my beautiful little baby (essentially a calcium spot on her heart) which normally means nothing but may be a soft marker for Down’s Syndrome. The doctors assured me not to worry but, I’m not going to lie, I had a bit of a melt-down on the car ride home wondering if my child was healthy, etc.

We were followed up with more ultrasounds.. still the focus remaining but there were no other indications of problems – good. One day at a visit to my OBGYN, I asked if I could have one last ultrasound to check if there were any changes.. she agreed and I went right away down the hall. So, all excited my husband and I watched the baby on the screen and GOOD NEWS – the focus has disappeared as the doctors had predicted.. YAY! Hmmm.. so why was the technician looking worried and why did she say she had to leave and speak to the doctor.. and why were they taking so long to come back in the room?

The doctor on duty came in and said there was a problem and that it appeared that our baby had enlarged ventricles in her brain. We were to immediately return to our OBGYN’s office for a consultation. We were in shock. My doctor sat us down, said a bunch of stuff I don’t remember except something to the effect of ‘your baby might not live’ (I wish I remember the exact terminology because it was so cold and “medical”) Anyway, so ‘blah blah blah, , any questions?’ Who is able to come up with questions when they’ve just been whacked in the head with a cast iron frying pan? It was easily one of the worst days of my life..

In the interest of keeping this somewhat concise, we ended up being assigned to the high-risk unit at the hospital and having level II ultrasounds every week. As far as we could determine, the level II ultrasound was a targeted ultrasound (examining a specific area) using higher resolution ultrasound (I think this might have been because that hospital unit had better equipment). Her ventricles were measured every time and did not seem to be getting larger or smaller. We suspected that she might have hydrocephalus but the official diagnosis at the time was “stable ventriculomegaly” meaning that the ventricles were dilated but not changing in size.

If the baby had hydrocephalus, it would be imperative that she have a shunt to drain the excess fluid… so we discussed with the neonatologist the possibility of delivering her early. I did an amniocentesis to perform a test for fetal lung maturity – which she failed – so we waited a few more weeks and delivered the baby at 38 weeks gestation via c-section. All hands were on deck for the delivery and our baby was whisked off to the special care nursery where she was placed in an isolette and hooked up to all kinds of machines. She was tiny at just over 5 pounds (I remember having a hard time finding diapers and clothing to fit her – later I ran into some other premie moms and they suggested doll’s clothing  She also had trouble sucking/swallowing so she was on an NG-tube for the first few days and thanks to an AWESOME nurse who worked with us, we were able to nurse and bottle feed in no time.

We were seen by a neurosurgeon at the Children’s Hospital of Eastern Ontario (CHEO) and assessed. He recommended that we get an MRI to help with the diagnosis. We were very nervous about the MRI because that involved putting the baby to sleep with sedation which has inherent risks but we went ahead anyway as we were starting to notice that she wasn’t keeping up with her developmental milestones.

Stay tuned for the next post …. the diagnosis.

Disclaimer

So, just a bit of a disclaimer before we get started on this blog.. my blog isn’t meant to offer medical advice or solutions for others.  Please consult your child’s physicans and/or certified therapists before attempting any sort of therapy or activity.  I can only speak to what has worked for us but I would also like this blog to become a place where other families can share their experiences.  I know there are tons of other resources out there but I wanted to combine as much of the useful information in one place as possible.  If you’re reading this, you probably understand how limited free time can be when having a child with disabilities.

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 :)