YOU'RE INVITED: A SPECIAL NIGHT OUT FOR A SPECIAL FAMILY
Marta, who you'll 'meet' below, is a long-time family friend. Marta has an 11 year-old son named Logan, who has been diagnosed with ASD--Autism Spectrum Disorder. This is a common thing for many kids these days, and every family who deals with autism has a hell of an uphill battle. The costs are exorbitant, the stress is extreme, and the daily challenges innumerable. So when there's a ray of hope, it's hard not to reach out for it.
Marta is raising money to send Logan for stem cell treatment south of the border. I've been witness to Marta's family's struggles over the past few years, but I've also seen the successes they've managed to accomplish with Logan. This family fights daily to get what's best for Logan and prove the doctors wrong--time and again--about his limitations. So when Marta came to me asking for help in raising the money needed for this new treatment, I said I absolutely would.
Below, you'll be able to read Marta's story. Before I share her words, let me tell you about our first fundraiser for Logan, coming up on
Monday November 26th, at the Boston Pizza in Barrhaven (Ottawa). Between the hours of 5:00 and 8:00pm, all diners will be able to place their bill in a fishbowl in the dining room, and 10% of each bill's total will be donated to Logan's treatment costs.
Reservations are a MUST, so please call Boston Pizza to book: (613) 825-1414.
We've also put together a lovely silent auction, with prizes like:
1) Gift Basket of Epicure Selections spices - donated by Kelly Matheson
Independent Consultant, Epicure Selections
2) Financial donation by Jacquie Bushell - My Ottawa Mortgages
3) Lastest release Cd's, T shirts and tickets to upcoming show from JW Jones
- Canada's Top Touring Blues Act - Maple Blues Award Winner
4) Original photograph - Princess Kate & Prince William - framed from Thom
Fountain - Keller Williams Ottawa Realty
5) Cosmetic Gift Basket - Joanne Picavet
6) Flow Blue Plate - 120 years old - Ottawa Tax Services
7) Flow Blue Plate - 105 years old - Ottawa Tax Services
8) Cobalt Blue Milk Bottle with Cat relief - Ottawa Tax Servies
9) Coblat Blue Milk bottle - "Pure Milk" - Ottawa Tax Services
10) DJ Services for an event - J Stoddard DJ Service
11) Hand Made pottery - signed - Sarah Ansell
12) Intellectual Property Legal, Patent and Trademark services - Kyma
Professional Corporation
13) Limited Edition Ceramic Candle holder - signed - Ottawa Tax Services
14) Certificate toward tax preparation services - Ottawa Tax Services
15) Hand Made Pink Baby Quilt - Susan Kent
16) Two cerficiates for Orthokenetic treatments and massage - Katerina Pek, RMT
17) A handmade purse from JR Creations
18) A $50
gift certificate from The Comic Book Shoppe.
If you can help out by bidding, eating, or just donating, it's appreciated. Marta and Tim have set up an account in trust for Logan, so if you'd like the information for his account
go to their website here .
This will be a long post when I include Marta's letter, telling her story. But I hope you'll all take the time to read it. Even if you can't help out, post a comment of encouragement, or just take the time to read. When a family is struggling, they need all the support they can get.
Here's Marta's story.
Blogger's note: Marta asked to update her story, so if you read it earlier in the week, there may be new snippets in here for you.
A LETTER FROM MOM
This is a story how one family survived against all
the odds, no matter what happened, they survived...this is our story.
10 years ago our lives were turned upside down, our dreams
were shattered, things were never going to be normal again all from one word...
Autism.
On September 5, 1999, our son Jared was born a healthy
9 pounds. We went through the typical parent anxiety like having Jared
sleep with us just “in case” the baby monitor didn’t work. Jared was not a good
sleeper and we found ourselves on many many car rides. Our paediatrician used
to joke and say “well you always have one bad sleeper and one good sleeper, so
the next child will be the good one” – little did he know.
On November 27, 2000, Logan was born a healthy - and
big - 11 pounds. It was an exciting time for us, we just moved into our dream
home (that we built) and Tim had a great career in high tech which enabled me
to stay home with our boys. Things were going great.
The first year was a blur. I don’t think I slept
more than 4 hours in a stretch, but, as all moms can attest to you run on
adrenaline. We soon found out that Logan would not be the “good
sleeper”.
Logan was just over a year when he started to get sick
with ear infections. We were at his paediatrician’s every month. When Logan was
18 months old he had his 1st set of tubes (myringotomy).
Even with the tubes, Logan still wasn’t talking or paying attention to things
so – on a hunch - his doctor decided that we should see Neurologist.
Logan was 2 years 3 months, when we saw a
Neurologist’s who - after a 30 minute appointment - told us “your son has
Autism”. We – like many families – were in disbelief. The doctor
told us about the “chances” Logan would have in life 1/3 wind up in group
homes; 1/3 in institutions; 1/3 will have a better life if they get Applied
Behaviour Analysis (ABA) or Intense Behaviour Intervention (IBI) and we should
forget about Logan having friends or his own family. We left in such
shock and with little hope.
The only thing we knew about Autism was from
the movie Rainman. After that day our lives were never the same. We went
to CHEO to meet with our Co-ordinator who had us sign and check boxes in order
to put Logan’s name on all the wait lists for ABA/IBI; Speech; Occupational
Therapy; Behaviour and we were told again how long the wait was for
these funded programs and privately the costs for ABA/IBI alone was between 40
to 50k a year.
The same month we received Logan’s diagnose the
company Tim worked for went bankrupt and the high tech crash happened. So
we were dealing with being told your son has Autism, we don’t know what causes
it or what his future holds, the therapy is phenomenal and now Tim is out of
work.
Over the next year 18 months our home life was
chaos. Logan was in CHEO every month to either have his tubes replaced;
MRI’s or CT Scans. No one could tell us why the tubes weren’t working -
just that they weren’t. Tim and I became quite the “pros” at CHEO we
learned to show up with a dvd player and lots of movies for Logan since we were
always waiting for appointments. After many trips to CHEO, Logan would
cry as soon as he saw us pull up to the hospital. Every time they had to
look into his ears we had to hold him down screaming, it was so upsetting and
frustrating and then to be told “his ears are blocked again he has to have more
surgery” I would leave in tears.
It doesn’t matter how many times you have to give your
child to the OR doctors you never get used to it. Tim and I would sit
right outside the operating room and wait hoping that this would be the last
time.
It only took 15 months from the time Logan was
diagnosed for us to use all our savings, sell almost everything we owned and
loose our home because the cost for therapy was exorbitant: Speech
was $100.00 an hour, Occupational Therapy was $100.00 an hour and Behaviour was
$75.00 an hour. We managed to put him in ABA part-time for a year at a
cost of over $14,000.00.
The services from CHEO were few and far between and
they had “their way of dealing with kids with Autism”. For speech they liked
using pictures to communicate instead of using words - Logan wasn’t deaf so I
was determined that he was going to speak. We saw a behaviourist a few
times and she basically said “kids with Autism don’t have eye contact”
so....that means’ Logan won’t? We didn’t want to wait to start therapy with
Logan so we did it privately. Did we see improvements – ABSOLUTELY – but
we ran out of money and had to stop.
I
researched everything I could find on Autism and therapies and tried anything
to prove the doctors were wrong about
Logan. Of course, we fell prey to people promising cures that did not
happen - they just wanted our money. Tim says we did a lot of “voodoo” J but I never gave up hope.
In, 2004 Jared was diagnosed as gifted but with
a learning disability and anxiety disorder. Once again we were faced with
having a child in therapy to help him learn how to read.
I went back to work part time and my father came to
our rescue and babysat our children in order to help us financially.
THE
COST OF AUTISM
Tim
and I have struggled to be a family and at times we didn’t make it. The
divorce/separation rate for couples when money is involved is high when it
involves children with special needs it goes up.
One thing people don’t understand, unless they have a
child with special needs, is the cost.
· Respite
care 5 years ago was $10.00 an hour now it is $20.00. Weekend of respite from
Friday night to Sunday morning is $500.00 (neither child has ever been away
from us)
· Camps run
anywhere from $450.00 a week to $700.00 a week.
· The day
to day expenses of things getting broken or if there is a small hole in
something that Logan is wearing he rips it.
The daily costs of having a child with Autism are
unbelievable. As a family we don’t qualify for charities or ACSD, (Assistance
for children with severe disabilities) because the rules say you have to
qualify by “gross” family income not net. They do not take into account
anything that has happened.
If I were a single mother that would be
different I would get more funding, ACSD qualify for charities, etc. I
have gone to SCS (Service Co-ordination) to apply for funding and found out
that we don’t qualify for anything but I could apply for “bridge
funding”. Bridge to what I don’t know since we were told we don’t qualify
for anything. I was also told that parents should learn to budget better,
take their holidays to cover off the summer months, school holidays and use
City programs. Well…I did try “city programs” a few times with Logan and
it was a disaster. He was NOT properly looked after:
· One day
at camp he got sun burned because they didn’t put suntan lotion on him.
· Another
time they didn’t put bug spray on him and he came home covered in bites.
· One time
I showed up and his “assistant” said that he didn’t want to participate in
anything he just wanted to twirl his string. When I saw Logan he
was walking funny and it was because after he was swimming he put both legs
through one leg of his shorts so no wonder he didn’t want to participate.
· I have
shown up early only to find other kids poking him because his “assistant” was
busy talking to other people.
I have been told I should look into the City run SNAP
program and when I did I was told Logan didn’t qualify because he couldn’t be
in a 1 to 5 ratio. That’s right my Autistic son who is a runner, is very
“curious” and manages to break toasters, microwaves, phones etc. and needs help
with toileting requires 1 to 1 - no surprise for us, as we always knew that.
As for holidays, Tim gets 3 weeks which he uses up for
appointments for the kids, sick days for the kids etc….I only work part time
and don’t get paid unless I am there. When I do work extra hours it
works against me because at the end of the year my T4 goes up and “Services”
think your family income has increased and while that is true but so has my
expenses.
I understand that most families face the cost of child
care, extra circular activities, camps etc. but when your child grows up the child
care expenses decrease and at the age of 11 would your child still
wander, be destructive, leave the house without clothes on, flush things down
the toilet and break numerous items? Logan will never be able to stay
home by himself and the costs for day camps run anywhere from $450.00 up.
When you are planning the future for your child you would look at College,
University not where you are going to be able to afford to place them in a home
– if there is one available.
Today, my father cannot watch my children as he is in
his late 70’s and has to take care of my mother who has Dementia, Alzheimer’s
and various other medical problems. I take time off work to help my
parents with doctor’s appointments, laundry etc.
We are not asking for pity –we are asking for
help so that we can try the Stem Cell treatment on Logan. I know there is
no guarantee. They are doing a study on younger children with Autism in
the USA but by the time the treatment comes to Canada we will be told Logan is
too old and I am so tired of hearing that. Since Logan’s diagnosis he
has:
· Learned
to speak - when we were told he probably wouldn’t and we should learn to use
sign language or pictures.
· Learned
to dress himself – he still forgets at times but we’re getting there.
· He has
some social skills –when we told he wouldn’t.
· He makes
eye contact – when we were told kids with Autism don’t.
· He
actually lets us hug him now and he shows affection.
Logan and Jared have made some pretty incredible
advancements. Jared is reading on his own and actually likes going to
school (much to the surprise of my friends and I). We take joy in the
little things that Logan does like getting his own milk, using a full sentence,
putting on his shoes etc.
NEW TREATMENT, NEW CHANCE
What results are we hoping for with the stem cells
treatment?
· Logan’s
language skills increase and he would be able to answer some questions like:
how was your day? what did you do? what do you want to do? and when he’s upset
ask him “what’s wrong” and have him be able to answer. It would even be
great if Logan and Jared would argue at least there would be some sort of
interaction.
· Sleeping
through the night
· Be able
to regulate his sensory issues.
MOST IMPORTANT: We want Logan
to be a productive member of society – not a drain on ODSP, welfare or on
drugs.
HOPE
ON THE HORIZON: HOW TO HELP
I
am not asking for pity with my store. I am asking for help so that we can try a
Stem Cell treatment on Logan. I know
that this is very ‘iffy’ and there is no guarantee. They are doing a study on younger children
with Autism in the USA but by the time the treatment comes to Canada, Logan
will be too old and I am so tired of hearing that.
I
don’t want to wait and see how the Stem Cell treatment works on other children
I want to try it on Logan. I want Logan
to be a productive member of society not a drain. This stem cell treatment will
require us to raise about $16,000 to get treatment, travel, etc. We are working
to start that fundraising now. You can help out by:
-Attending
the fundraiser we’re having at Boston Pizza in Barrhaven (Ottawa) on November
26th from 5-8pm. There’s a silent auction, and 10% of your bill from
your meal will go to Logan’s treatment. All you have to do is make a
reservation by calling (613) 825-1414
-If
you can’t come but still want to help out, we’ve set up a bank account in trust
for Logan. You can make a contribution by heading to our website.
-Spread
the word. If you have friends who can help out, have fundraising ideas, blogs, or
happen to work in the media and may be willing to spread the word further, let
us know. (Blogger’s note: you can email Jordan at projectpriceless@gmail.com and I
[Jordan] will share the info with Marta, or head to their website.)
SUCCESSES
TO BUILD ON
Since
Logan’s diagnosis he has:
·
Learned
to speak - when we were told he probably wouldn’t and to learn to use sign
language or pictures.
·
Learned
to dress himself – he still forgets at times and he always forgets to wear
socks and shoes, but hey: we got the pants on.
·
He
has some social skills –when we were told he wouldn’t.
·
He
makes eye contact – when we were told kids with Autism don’t.
·
He
actually lets us hug him now and he shows affection.
The
doctors said none of this would be possible, but Logan has accomplished it all.
We want to give Logan another chance to show the world how great he is, by
getting him this treatment. We’ve seen him come so far, and that’s why our
website for Logan is called We Will Never Give Up. Please help us fight for our
son.
Thanks,
Marta,
Logan’s mom
