May 29, 2010

the month of may

may has changed our life.

the month of may has been full of information.
it has been scary & very in your face.
it has been 2 months of alot of new in our house.

the new house.
it has been a very positive change for our family.
we have gone from 1700 sq to 3000 sq!
the house is full of carpet, high ceilings & full of light.
each of the boys have their own room, and we have our OWN room.
there are no more children in our room,
it had been two years!
we are still unpacking & need to have a garage sale,
but i am in no rush we are not moving out of this place any time soon!
this house has been great for mason,
by the time we left the last house he was having melt down's to the point of screaming all day.
i was having melt downs inside because i couldn't help him.
we have far less melt down's now.
a house is a house unless you have SPD.
and we have Sensory Processing Disorder.

knowing that mason has SPD is what has changed our lives.

mason has had many development & mental health tests lately & we thought we knew,
but we were wrong.

i am starting to understand my son.
many of M's people have told us we look more relaxed.

we are more relaxed.
yes we do not know what M's full diagnose will be & what other things will pop up,
but i know what my son needs right now & not every one has turned us down yet.
i have medical professionals & ipd confirming my feelings,
guess what? i am not crazy people!
but more than that these professionals are on my side.
i don't feel like i am fighting everyone anymore.
i still have dr.s who don't understand M,
but from the latest reports we understand why.

i have been reading about SPD & as i read i see my son.
it makes me feel good to know that other families are dealing with "behaviors" like us.
it makes me feel hope...
even though M is a one of a kind kid, there are other people who know bits & pieces of what we are going through.

idp has played a huge part in my feeling less stressed.
even though i am having a really hard time trusting that things will be done & they aren't going to just promise all this help & walk away.
don't blame me
i am seeing that some things are getting done & i am excited that some of the managing has been taken off my shoulders.
J (mason's idp worker) has booked him for consults with PT, OT & is going to chat with Mental Health Child services.
in 1 of mason's tests, "ages & stages" looking for social & life skills he scored extremely high.
the test starts at 0, at 50 they start to worry, & the child would need to be looked at.
mason scored 251...x5 the point when they start to
J was going straight from our house to talk with their mental health worker.
she is also helping get papers & letter from all the doctors.
we will be bombarding the government with papers that say they should be funding mason.
J told me that most people don't deal with such severe mental health & medical concerns like us, & when they do they aren't getting so lost.
J wishes she could say something, she could tell us what's wrong.
they situation we are in is hard, wrong & a lot to handle.
J told me it's okay to feel sad about it sometimes.
J is making weekly visits to our house.
i like J.

K is our OT.
my latest meeting with K was even more eye opening.
i actually was there for C, but we had a little chat about M.
it has become very clear lately that is really not safe for M to eat orally, K believes it is very unlikely that M will ever eat for nutrition.
i believe this too.
M's eating orally has been decreasing extremely fast.
M is able to tell us more now...
it hurts him to eat & swallowing has become more difficult.
for now we just need to make sure M is safe when he is eating orally.
we will work on some oral exercises to help M find his mouth.

M has been reffered to a new GI dr.
this dr. is a specialist who just moved here from toronto sick kids.
he has set up shop to work with kids & is thee specialist who deals with tube feeding.
this dr. knows his stuff & we are praying he will look at M's system again.
it doesn't work right.
this will happen at the end of june...
so it's a bit of a wait to get started.
but who cares?
at least he's is on his way to see this dr.

we are trying to get funds to send M to a clinic called, "sensability"
these are OT's who only work with kids who have SPD.
what is SPD you ask?
check this out:
SPD can be explained like a neurological "traffic jam" that prevents certain parts of the brain from receiving the info needed to interpret sensory information correctly.
seriously if you are friends & family i urge you to take a few & just read the first page of the link.
it will not even give you a hint of what we are going through with M, but it will tell you what it can look like.

Mason couldn't handle living in the other house, he had constant mental break downs.
here's why:
M has auditory processing disorder (1 piece of sensory processing) Say you are listening to music, the volume is levels are 0-10, you are listening to it at 5, mason hears it at 10.
the floors in the old house were hardwood the sounds of everything were bouncing from every element.
M was constantly feeling everything was to loud, we know also have a pair of earmuffs.
he just pops these on when sounds become too much!
the bright light also bothers m so he wears sunglasses for a couple hours a day.

there are many aspects to mason & as he is getting older we are learning along with him to deal with his quirky ways.

there are alot of people who look at my kid funny...
take last monday for instance.
Nick has been on holidays all week & variety gave us tickets to go see a show at the Vancouver's International Children's festival.
So we decided to see, the national taiwanese acrobats troop.
we decided not go see anything noisy b/c m has had a break down just watching the dolphin show the week before.
so we get to the show & the music is loud & banging & we think there is no way we are going to get through the show.
i had bought the earmuffs just a day or two prior, so we decided to give it a try.
so there we were a family of five, with a two year old kid wearing a backpack, sunglasses & earmuffs.
the other kids dressed normally.
now you can imagine the stares we got.
BUT, M made it through the whole show.
so stare at my kid if you have too.
stare at me & think i am a bad mom.
i don't care what you think.

as you know C has had issues with eating since birth.
so he has been going to therapy.
we have just put C on thickened liquids & it has helped.
he is very picky, but he is so much better than M.
K says C is a very different kid than M.
i agree.
just thought i'd let you know!

he went to his pre-kindergarten day at SCS & loved it!
i can't believe we will be entering the elementary world next year already?
J is waiting for an assessment.
it is believed that J has a sleep disorder & possible ADHD.
what sleep disorder he has we don't know yet...
this isn't exactly surprising news to us.
just though it was time to let you know.

N & D
last night we sent the kids to their Nana & Grandparents.
we spent the night out at a friends house playing games & then came home to an empty house.
we slept until 10:30 this morning!
do we feel refreshed?
i think it may take a couple days of straight sleeping to feel refreshed, but we are so greatful for the sleep we did get!
it has been a really long time.
back to reality tonight...
the kids are already sleeping upstairs.

Do you have any questions for us?
Just leave a comment & I'll try to answer it!

May 19, 2010

what I haven't wanted to talk about.

last night we participated in "Dreamnight" at the Vancouver Aquarium.
it is a night for kids with special needs.
it was really touching...
there was only a small amount of people compared to the normal crowds.
all these families are impacted in some way.
these were children & families that might not get to do these kind of outings.
mason had a really good time, even though some things were just to much for him.
it was awesome b/c we could just somewhere else where it was quiet.
josh loved it too, he met ronald mcdonald & followed him everywhere!!!

we saw a family who we had met & got to know at children's when mason got mr. tubie.
there son had a mr. tubie too.
G (the little boy) had a terrible infection that ripped his insides apart.
since we have seen G he has had a kidney transplant from his dad!
his is tube free & doing well.

i also met another mom who seemed incredibly strong.
her son was born at 31 weeks...terribly sick
he has issues that will be with him for the rest of his life.
I believe there are neurological & major organ issues.
at 18 months, 5 weeks ago he had open heart surgery.
she seemed so put together, so positive.
yet it felt we were grasping at each other...
i had a son like her who was tube fed.
she has seen the new GI dr. we are going to see & he has some great ideas for her son.
it made me feel more positive knowing what good results they are having.
but they know what is wrong with their son, what to expect?
i will be hooking up with her on fb!
it will be nice to have someone who knows what you are going through...
she knows more than me.
i have never met H but he is in my heart already.

we are blessed that Mason is as good as he is.
we are blessed that his heart works just fine.
we are blessed.

the last month has been a lot of ups & downs.
there have been lots of emotions that have been up & down.

i just received the reports from mason's autism assessment.
it is really great news that at this time they found he isn't autistic.
they recommend that he be re-checked in 2 years.

idp (infant development program) has started working with us finally!
i have been asking for them for months, but we were told mason didn't qualify,
once again lost in the cracks.
then one little worker said something to someone...
when the supervisor called us, she was extremely upset & apologetic.
she said that an intake worker would be calling us very soon.
for once it was the truth.
meet jolene our idp worker.
jolene is going to be making weekly visits with mason.
she will be working on goals that the consult OT, consult PT & consult Speech will set.
read "consult" as in not actually receiving any therapy just given ideas to try on your own.
jolene will also be helping me with getting all the paper work in order to address the government programs.
it has been one year since they turned us down, so we can hound them again.
jolene is going to help me get some things at home running smoother & she is going/has been explaining the reports to us.
so we can get it understand them.
so i can understand how to handle/deal with mason.
getting emotional now.

jolene's last visit she explained to me what the reports indicate for mason.
the development cognitive reports were shocking.
the autism center led us to believe he was smart & really good.
maybe they just didn't know how to tell us mason needs us but, doesn't qualify.
mason reads spd (sensory processing disorder) all over the tests.
he did score very high in the IQ part.
but in the part where kids are able to use any adaptive skills he scored below 1% for his age.
Daily living skills needed to live, work and play in the community. The adaptive skills are: communication, self-care, home living, social skills ...
so basically mason is smart...
but is unable to use any of his smarts b/c his sensories don't work properly.
or this is the theory.
we need to treat mason essentially like carter.
mason is a 2 year old who has the iq to be 2...
just can't put it all together to make anything function.
it must be so frustrating for him.
jolene & so many others in the past have told us that mason will get a diagnose...
but it's going to be as he grows up.
all his crazy puzzle pieces will fit...
we just need to give it time.

jolene asked if i had understood the reports?
i said, "i think so, yes."
but i hadn't...
i didn't understand that we were treating mason way above his abilities.
i didn't know that we were probably frustrating mason just as much as he frustrates us.
because everyone kept telling us how "normal" he is.
when in fact someone or us paying for it finally did the what should have been done from the beginning.
tests that clearly show mason is not normal.
at least i won't have to fight this anymore...
i'll just shove the reports in anyones face who tries to tell me he is "normal"

now please don't read this wrong.
i know mason is blessed to be as healthy as he is...
i know m is blessed to be without "autism"
i know that mason doesn't have some of the serious health issues that many other children we met last night
but mason is still my son & he still deserves all the help he needs.
just like so many other children.
i hope that when we get some of these people on our side who know how to work the system...
that we will get some of the help mason needs.
i fear that he won't
i fear that it isn't going to happen.
i have lost all faith in a government who is failing so many.
i do not trust anyone who says they are going to help.
i am trying to trust, but to be let down again would be devastating.
idp better pull through.

i am positive after meeting some people & knowing what mason needs...
i just have to find the money to meet his needs!

i have never been good at waiting.
it seems i am learning!

thank you for your patience & understanding in the last few weeks.
there has been so much up & downs...
it has taken some time to take everything in.
to gain a new perceptive on the situation we are in,
so thank you!

May 3, 2010

Just a pot is just a pot unless...

they are rachel ray pots.
top 10 reasons why i deserve these pots.

1- they are on sale for $119.97, from $169.97.
although my hubby says the best sale is not "a sale" at all.
2- we are on a life style diet & i have to cook all stinkin day...
i have never eaten so much food & for a diet?
3- My non stick pots don't have lids & you need lids with kids.
4- they are non stick & i only use non-stick.
5- they are rachel ray & she rocks...
6- my kids are driving me crazy & i deserve pots to make my life easier.
7- they sell them at walmart
8- my life could be easier with new pots.
9- they will give me powers to cook like rachel ray.
& believe me i need some cooking powers, my poor family!
10- it's going to be mother's day.

so for all these reasons listed above i think you should help me my receive my pots.

ps. I could do lists for other products, like Pandora?

actually I know what I am getting for mother's day...
j has been singing mommy i love you songs all week :)
excited for my mother's day tea at his school!

May 1, 2010

Where, what, who & how?

now what?

i have been sitting here all week...
that's what i have felt until today.
i don't know what mason needs, what our family needs...
but i do know that we need change,
calm & peaceful change.

mason goes for his $610 dollar assessment with the OT for his sensory integration disorder on monday...
then it will take until the following monday to find out what their recommendations are.
then we have to try to come up with funding for the next year & for everything new that he needs.

that's where today's "breaking of my numb" came about.
today i took part in the mom2mom swap meet...
needing money like always to purchase some needed clothes for the boys i reluctantly signed up for a table.
even worse for my numb the sale was a fundraiser for autism, which my son doesn't have...
but it still brings up a ton of emotions due to my son being "Autistic-like".
then i met another lady who had bought a table at the swap.
this lady is a guru in funding, advocacy, & programs that my son needs to build his life.
this lady knows the system...
she knows how to push the buttons...
to get the funding...
to get the services...
to get people on your side.
but she is dang expensive!

i know it would be well worth it if we could get things going...
could actually get funding for all mason's needs.

she talked about the impact on the family...
how was it impacting us?
that was the first time i cracked.

second time i cracked was when she described my son...
without knowing his case or ever meeting him.
i want this woman.

i must have this woman...
i need help.
i am tired.
i am done.
this is how i feel most days lately.

i am really trying to turn everything into positives...
we have had some good days these past couple weeks.
more than most.

but we have also had a number of days where he just shuts down...
more than ever.

today when he was "drugged" on his melatonin before bedtime...
he was so good...
happy, calm & well, not violent.

funny since i had a old friend over who was meeting mason for the first time.
she thought he was great...
& today he really was.

i hope tomorrow brings more of the same, good.

as for what the future holds???
we are looking into something the lady today told me might be a good idea for mason.
so i am looking into it.
but i will need 5 family members or friends to step up.
i will need them to meet with us x1 time a month to come up with plans for mason...
what should we do?
what kind of activities should we do this month.
5 people who will commit to mason & making sure he gets his care.
b/c we are tired...exhausted!
& by law to make this venture work i need 5 board members.

we were told twice this week that we should go to emerge & tell them we were done with mason...
his care is too much.
in hope that social services wouldn't take him into custody...
but would put more services in place to help our family...
to become a happy family.
a little less stress...
a little respite.
i could use respite.

but there is the possibility they just take mason.
at this point i do need a break...
but that break is not to give my son away.

tomorrow is going to be a good day for mason & for our family...
i am believing it.