Thursday, 20 September 2012

King For A Day...


I had an unexpected gift this morning.  I had planned on having a pretty blah day- in fact I had to go to "the office" this morning for the first time in 2 years. Yes, I know, wahhhh.  Poor, poor me.  But really, that means makeup and real clothes!  The sitter and I had to swap cars so that she could get the boys to school and I could make it into the office by 8.  I had to go in because my company is upgrading all of the computers, and per the notice I received, they needed a few hours to do it.  8 to 10 the schedule said.  So I took my computer (aka my livelihood) into the office and handed it over. I said, so about 10? He looked at me and laughed.  He said "maybe tomorrow".  OK, well, EVERYTHING  that I need to do my job is on my computer- even my phone. So guess who had a day off??
For a split second I thought of doing something for me, but what I really wanted was a day with my littlest boy. I never get to spend the day with just Natey.  So excited!  So I called the sitter and let her know about the change of plans- her son is visiting from California, so she was more than happy to have the time off.  And I went to pick Nate up from school.  Nate was so happy to see mommy.  When he walked out with his aid for the day he was super excited- the aid however mumbled under her breath "well there's a surprise, look who's here."  To her I say- listen woman, I may not drive my kid back and forth to school each day, but I am not sitting at home eating bonbons.  Financing all of the interventions needed for one special needs kid is expensive, forget two.  I am WORKING full time, and even so, only have daycare until 2pm.  I spend as much time as possible with Nate!  Just because YOU don't see me on a regular basis does not mean that I am not an involved parent.  She didn't even give me the usual "report" that the parents receive at the end of the day.  I wanted to kick her in the shins.  But I refused to let her ruin my day- so I just thought about how good kicking her in the shins would feel, and then I moved on.   
I didn't have any "big" plans for Nate and me, we went to Target, looked at toys, books, walked the aisles.  He was just chatting away.  Pointed to things all over the place. We called daddy and decided to go see him at the office, then go out to lunch.  This was a really big deal.  None of John's coworkers had seen Nathan since he was an infant.  And when we were going through the first 9 months of this autism journey, he really didn't tell anyone about what was going on.  This news is pretty recent for all of them- they are very supportive of us, but of course, they couldn't really know what Nate's level of functioning is, they just hadn't seen it.  It was very brave of John to be willing to share this with his coworkers, and it was certainly not something he would have been ready for a few months ago.  People hear that he is almost 3 and talk to him like that's his age.  And his comprehension and expression are nowhere near this level.  This was the first time that John really let people in his life see Nate and observe him in his own little world, stimming, humming, and all.  I made a concerted effort to let him explain Nate's behaviors to his coworkers- it was good for him and I wanted it to be his decision how much he disclosed.  I was very proud of him- he explained without saying too much, and maintained the pride that I know he has for Nate. I know this sounds like a given, but it can be tough to expose yourself to others' judgement, especially when it comes to your child, and even more so when your child has special needs. Everyone remained very supportive- John is lucky to have wonderful coworkers.  They make us both feel cared for.

After this, we headed over to Whole Foods for lunch.  I could get Nate food that he can eat there, and of course their prepared foods rock.  Nathan just basked in our attention.  I can't remember another time, other than when we have gone for evaluations, when just John, Nate, and I have been out together.  He had no competition for once.  He was so so happy.  And so were we.  He is such a beautiful, special little boy, and times like these are just precious.  Nate cried when we left, he never does that.  I'm glad that we could give him a mommy daddy day.  We all loved every second of it.  We dropped daddy off at work, and headed home.  Nate took a nap- and I of course ate bonbons. Oh wait that's right, I actually waded through 30 pages (this is NOT an exaggeration) of questionnaires that I am currently being asked to fill out for the SEED study at Hopkins. Let me tell you, I will be READY for that $50 gift card after this!!  We are getting closer to the 8 hour visit....that will be a big day.
Speaking of which, tomorrow is another big big day.  One year. Since the initial evaluation with Infants and Toddlers. One year since we confirmed we have two special needs children. One year of therapy.  And we are still kicking!  I get worked up for every single evaluation for Nathan.  It doesn't matter if he has made progress or not, they are still going to focus on his deficits. And that will always be hard to hear.  We will also start to discuss future plans- ie, where he will be "placed" once he turns 3.  This is also anxiety provoking.  Please say a little prayer for our family- not even for everything to go "well", but for things to go the way they are meant to be.  As always, we love our boys, and want whatever will be best for him.  And then, I want to eat bonbons.  I am, after all, a luxury girl.  

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