Friday, June 19, 2009

The Bad Week Seems to Have Finally Ended...

....this week has not been my best. Between tantrums, breakdowns and unjustified anger and frustration, I was starting to think this week would never end -- and that was just me. And what makes it so bad was that it all started with something that should have been a positive -- hearing from CSAAC to help us make sure that Rachel was getting all the services she needs.

One of the reasons this call may have set me off was because we were waiting for phone calls for 2 different types of services. One was CSAAC and getting the pieces in place for in-home ABA. The other was Kennedy Krieger Institute (KKI) to have a medical evaluation to try and determine a more specific diagnosis than just "Autism Spectrum Disorder" and perhaps learn a possible cause of why this has happened to them. KKI called me to say that they would be happy to see them back on May 15 and I would hear back in a couple of weeks to schedule a time. It had been over a month and NOTHING! We were told that we would probably have to wait a while to hear from CSAAC who was just contacted a couple of weeks ago, and they were already arranging for me to bring Rachel in for an evaluation with their psychologist 1 week following the phone call. So, after receiving the call from CSAAC, I called KKI and left a message -- I don't really remember what I said, but while still trying to sound like an adult, there was probably a significant amount of attitude in what was said. And, the worst part of it all is that I never really wanted to contact EITHER of these groups in the first place -- yet, here I am so angry and upset that KKI isn't getting back to me and CSAAC is responding so fast (no, there was no way for either organization to win).

So, we'll just say my coping skills have been non-existent this week. It felt like everything that was happening around me was part of a conspiracy to make me miserable. I had hurt my leg which prevented me from running after the kids on the one nice weather day we had (early in the week at least)....the weather was lousy....a field trip that we had all been looking forward to was day (the worst of day of the week) had no naps to speak of (and when a 29 month old only sleeps for an average of 8hrs/night, naps are really necessary)....4 year old spitting into his drawers (thinking I wouldn't find it)....biting from an overtired 2 year old....poor sleep by me....and constant fighting with everyone. Things really weren't all that bad....but because I have been in such a lousy mood and seeming to surround myself with nothing but self pity everything just seemed to add to it all.....

Today has been a better day. Rachel and Simon had their second gym class of the week, and unlike Tuesday, Rachel didn't have to be pulled out of the gym kicking and screaming because she wouldn't stop climbing on the parachute (still wouldn't stop climbing on it, but I was able to get through the activity in other ways). Simon had a lot of fun and actually volunteered to go FIRST on some of the demonstrations (like doing a straddle roll on the "cheese mat"). Rachel also participated in all the activities and was having lots of fun bouncing and throwing the ball at the end of the class, rather than just simply hoarding them all to herself. Then we went to a playground and met up with another family.....Daniel had a GREAT time playing with one of these other boys (with a periodic emotional moment or 2) and Rachel and Simon both stayed in the playground and were playing appropriately for OVER AN HOUR!!!!!!!

Finally, to come full circle, while we were out today, I received a call from KKI. I called them back after the twins fell asleep for their naps. They are looking to find a time in the schedule for both Rachel and Simon to be evaluated in a single visit (2 different evaluations by 2 different departments for 2 different kids) so we don't have to keep running back and forth. They estimate they will have a time for us within the next week and it will be in late August. It will require Kevin to come with us and probably for me to find someone to take Daniel (for the whole day). For some reason, this news isn't making upset the way the CSAAC phone call did -- just the opposite in fact -- which hopefully means I'm through this self-pity stage that has been plaguing me all week. I'm hoping that following these evaluations, we'll finally have some of the answers we want (or don't really want) and need in order to help ensure they are getting the best possible care and services.

1 comment:

  1. your week sounds similar to mine! ugh, i think it's a wavelength on the autism brain wave that just said "screw it all!" hehe, maybe not quite THAT extreme but it certainly feels that way some days! we got eval results for james this week, and guess what? they say EXACTLY what i've been saying all along! imagine that! hehe...though having it in writing right there makes it so much more "real" but also "proveable" like you aren't going insane...ugh, the ALL day testing, those are SO tedious (part of james' eval was that all day thing) but so worth it in the end...