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.


  1. Giving Mason to the Ministry MAY get him more access to funding, but he would spend his days with a family that may not be any better equipped to manage his uniqueness. You have the advantage of loving him unabashedly, That counts for so much. We are SO rooting for you.

  2. Tanya is right - Mason needs to be with people who love him just because he is. Let me know if there is anything I can do to help you Dana.

  3. Dana,

    Thank you for stopping by my blog today -- I hope you are finding some support for you and your family out on Sensory Planet!

    Please email me any time -- you need to know that YOU are the BEST advocate your child can have!

    Take care,