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!

1 comment:

  1. WOW! That is a lot happening in May! You are amazing. I am so thrilled that things are looking a bit more clear and you are getting some answers and some tops and tricks that make it a bit easier.

    SO glad you got some alone time and sleep w/o the kids !!