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!

1 comment:

  1. Oh, wow, momma. You have so much on your plate! I know how you feel. ((hugs)) I, too, have a child who has issues for days but no "diagnosis" as well. So frustrating.