I really don’t have time to be writing this at this stage of
the game, but I almost need to. I need
to process how after years of being an “autism warrior mama” so many things can
be changing all at once, leaving me feeling like “the new kid” all over again.
That’s the thing about autism, since there is no “right way”
to parent, or seek treatment for our kiddos, and there is no “end game”
involved either. There is no, ok, well
we sought “treatment” or “therapy” and now we are all set. Nope.
There is always something different that can be tried; there is always
someone over your shoulder making suggestions.
And no one is right, but everyone is, because no one really knows. In some ways, it’s positive, because there
are always other avenues to explore if what you are doing isn’t working, but,
there is always that feeling of not knowing what you are doing, and if you are
me, always feeling like you aren’t doing enough.
Tomorrow is the start of some huge changes. Nathan has finally been approved for ABA-
starting tomorrow we will have therapists and techs here 8:30-11:30 am Tuesday,
Wednesday, and Friday, and 4-6pm Tuesday-Friday. Jack is right behind Nathan, and will be finishing
his ABA evaluation on Thursday. For
Nathan that means a lot less down time, and less time at Cisco Center, which
has been a huge part of his life for the past 2 years. As I said to Cisco over the weekend, this is
not a reflection of our opinion of Cisco Center, this is just me, as a mom,
trying absolutely everything I can to help my son. But that doesn’t make it easy, for Nate, or
frankly for me. This will change
everything about our day to day life, from my schedule while working from home,
to cleaning the house, preparing meals, to getting Nathan on the bus for school
(I will need to drive him to Cisco center after lunch as that is where the bus
picks him up). My “guess” is that Jack
will also end up with daily ABA 4-6 pm, after school. Talk about crazy afternoons! It’s worth it, and they deserve it. It’s just more change.
Add to that the fact that Nate’s transition IEP meeting is
this Thursday. There will likely be
about 12 people, in a room, reviewing all of his progress or lack thereof, and
deciding where he will go to school next year.
I am pretty confident of what the decision will be, and I agree with it,
but that doesn’t change how extremely emotional it is. Because beneath this exterior, I am still
that mom who wishes more than anything that I could put my little guy on the
regular old bus with the neighbor kids and send him to kindergarten like most
parents do. There are several kids on
our street who are the same age, and I will be watching them go next year. It’s just all hard. None of this is easy, and contrary to what
people have told me a million times, it doesn’t get easier. It gets harder
We are also working on new medical interventions for the
boys, new supplements, dietary changes, the “usual”. Jack has several medical consults coming up. Nate still needs to complete his final NIH
sleep study, as we had to cancel it last week when he was sick. Jack’s IEP meeting is April 9th,
this year has been rough for him at school, and I don’t feel he is getting the
support he needs. His new BCBA and an
educational advocate will be helping me prepare for this meeting. I love his teachers, and his special
educator, but I am seeing changes in him that concern me, increased anxiety,
increased behaviors, and an inability to keep up academically.
So in a nutshell, I know we are doing “the right things”. But I feel like I am living in a pressure
cooker over here. There are days in life
when all you can do is focus on “walking through” all of this. Never
in a million years did I think that there would be this many people involved in
the raising of my two children. Never in
a million years did I think that I would have no idea what to do for my own
kids. But here I am. I am extremely fortunate to have all of this
support coming for the boys- but I am overwhelmed. I think I need to seek some more support for
ME.
