Thursday, December 13

some days....

yesterday, i got a call from Arkansas Children's because we have registered as interested in any autism research.

last week, hiba started OT.

a few days ago, we got a letter from the preschool about the transition process to kindergarten.

i put chew necklaces and sensory toys on hiba's christmas list.

i have found myself constantly looking for sensory outlets for hiba at home in the evenings so she can calm herself down.

*sigh*

i know she is doing great right now. i know she has calmed down a lot this year and is learning how to deal with transitions, noise, sensory issues, etc. i know that having autism is not the end of the world for her. i know all of the things above are good things, ways to help her. but they are still reminders. reminders that this is forever. reminders that this is something we will be helping her with for a long time. reminders that there are things that she needs help with.

most of the time, that is fine. most of the time, it is just life and not a big deal. most of the time, i am ok with the idea that hiba has been labeled as having these issues and that the label is helping her. most of the time, i am ok with it all.

but other days, it makes me sad. it makes me sad to think that she has the anxiety that she does. it makes me sad that she needs help with transitions. it makes me sad that she needs OT to figure out how to get all of the sensory input she needs to be calm. it makes me sad that we need a transition meeting and IEP or 504 or whatever for kindergarten. it makes me sad that she can be a part of studies. it makes me sad for her, and honestly it makes me sad for me.

it is ok. things are going well. hiba is doing great. but it still makes me sad some days that we have to keep reminding ourselves that she is doing well, that there is something for her to "do well". some days i have to remind myself that she is hiba, perfectly and wonderfully made, and she is happy. she loves life. and i think we are all doing the right things, making helpful choices. and that makes me smile.




2 comments:

Carol said...

And that super cute picture makes me smile. You guys are doing amazing!

Laura Klenda said...

Love that picture!

Has anyone recommended this book? http://www.thebeakerkids.com/books-to-buy-the-beaker-kids-laboratory-manual-for-intrepid-sensory-scientists.html

It was written by the mom of one of my former students and really helped us have a "language" with which to communicate sensory issues well.