It's going to be a tough one today.
On many levels, but mainly because at 4:00 today Tom & I will be at Children's Hospital/Boston, meeting with the specialists at the Developmental Medicine Center to discuss their findings/results/opinions (I say 'opinions' because unfortunately there is no blood test or x-ray that tells you what is going on for sure for kids like M.)
My parents are coming later today to stay with the kids, which is another thing altogether. Family tries to understand, but this is one of those things that you really don't know...until you know. When I spoke to my mom other day about coming, she asked if we were going get pizza and ice cream & have a little party & watch a DVD of Jack's camp music performance & how they are going to give my kids some money so they can do something for Tom & my anniversary which happens to be Sunday (18 years) and on & on. And of course, I would be the one to provide all the set up/retrieval of food because that is just my role in the relationship. I was a little stunned, but not overly surprised. It goes with the territory of people not really getting it. Another example would be when a couple of days ago, my Dad asked whether we would all be going up to Stowe soon & talked about the fun things he & my mom did when they visited us there. He didn't mean to make me feel a little sad inside, but hello, M won't leave the house so 'what the eff are you talking about?' I told my mom "well, I am not sure how going to feel when we get home after the appointment in which M will be officially (more so than the arbitrary "not sure what's up" diagnosis of PDD-NOS that doctors give kids until they either strike out the autism diagnosis or specify what type it is in particular--classic Autism or Aspergers) diagnosed with Autism." I told her when we first talked about getting together some night this summer to do what she described, it was prior to getting these appointments & the spiral downward that we have been experiencing and um, can we just separate those two events. When I was trying to explain, she clearly wanted to get off the phone, she was tired, etc. And this is a woman who DOES try to get it & reads up on it. But they don't get it. Like when she says to me "Does he always have to have his way?" when I am referring to a meltdown regarding getting take-out, but that little piece was actually such a small footnote in the actual shitty-ness of the story of my day & actually was a 'proud' moment for me and M because he did eventually calm down & did not get what he wanted. So her comment was a dagger of being misunderstood for me. A feeling of exhaustion, a feeling of I really have no one other than Tom to talk about this stuff. It is so isolating.
Unfortunately I do not have time to write more. I have not really said much of anything of what has been going on here for the last year since my last post. It is so pervasive to our existence that it is kind of like a whole lot of nothing and a whole lot of stuff goes on. As I try to explain to my mom when she asks whether today is good day, well, it depends on the moment. It is moment to moment.
And add 2 dogs to the mix--the 1 1/2 year old one & the itty bitty puppy. I love them & don't regret having them, but it does add a little bit more crazy to the house. But believe it or not, it has added so much good as well.
Oh while I am complaining, I have a bad headache, changed my Pill prescription & for some reason have not gotten my period so I just feel like on the verge of getting it--you know that good feeling of bloaty-ness and all, the weather is disgustingly humid, I have a massive "courtney love" style bruise on my freaking lower leg, Tom can't scoot out of work early so I have to meet him at his work & then drive into the appointment (meaning I have to deal with this house, dogs, parents, etc on my own & the mad rush to get myself ready, prep paperwork, make sure everyone here is all set).
Well, I have got to get moving.