Monday, August 29, 2016

The one where Momma breaks down...

Last night, I had a "Why, autism? Why us? Why me?" sort of night. 

My son was hurting, and he couldn't tell me how or where. He cried and cried and screamed and I did what I could to help but really, I felt helpless. Autism has become this welcome specter in our home, where it's not even really thought of but constantly considered and accommodated at once. Times like this remind me that we're not like every family, and my baby isn't like all the others. 

Once the storm calmed (entirely on its own...despite my best efforts, it was none of my doing), I craved a hug that would last just the right amount of time for me to cry and cry and let it all out. Instead, I lay in the dark with my son laying on my chest and sobbed as quietly as I could, so as to not wake him and start the cycle over. 

I felt my heart actually break for my son, and it still hurts this morning. Why must life be so hard for him? I've always valued words and communication and expression so much, and he's locked in his head, unable to access these things. I feel like I was given this precious, perfect lump of life and I somehow, through action or inaction, genetics or karma, ruined it. My son is amazing and incredible and I tend to forget all about his diagnosis because he's just a tremendous ball of beautiful energy, but times like this, I am humbled by his struggle and all I can do is collapse under the weight of the guilt that I somehow did this to him. I think that in our case specifically, autism seems like a battle because we REMEMBER life before, when there was not just the promise of a social little chatterbox of a child. He was RIGHT THERE, mimicking speech and seeking us out, and then in a flash, we lost him. How does that even happen? What did we do to our boy?

Just hours prior to this storm, I was counting my blessings and thinking how lucky I am that we've adjusted so well to autism. As I said, most of the time, I don't even see it. It doesn't occur to me that my son isn't like every other kiddo his age and that he couldn't do any and everything he could dream of. I constantly read about families suffering and struggling and I just think "thank the universe that we pretty much hardly feel this way". I'm too close to the situation to really NOTICE just how different our lives are to those around us, so it's easy to convince myself we're like everyone else. 

Why am I sharing this? Because I think I sometimes appear to have it all together, even (and especially) to myself. I want to live authentically and transparently, and part of that is acknowledging when I feel low. I also want to let any other autism parent out there know that it's ok to feel low. Hell, last night I felt full-on defeated. The important thing is not living in that moment. As soon as you're able, dust yourself off and keep on going. Your kiddo depends on you. 

Friday, August 26, 2016

Year Three, Week 9 (113th Weekly Video!)



In this video:
*chewing through phone chargers (again)
*not willing to eat hot dogs lately
*loves his misting fan...allowing his hair and face to get wet!
*He said 'Bacon!"
*learning so much by watching us! Playing with a toy appropriately and loading the washing machine
*hoping for more therapy hours, thanks to the scholarship

Tuesday, August 23, 2016

Year Three, Week 8 (112th Weekly Video!)



In this video:
*meeting (and excelling at) his goals across the board!
*ear buds and (GF) many sensory wins this week!
*adjusting to our homeschool routine
*hoping to add on more therapy through his scholarship

Monday, August 15, 2016

Year Three, Week 7 (111th Weekly Video!)



In this video:
*officially submitted paperwork for Bu's homeschooling with the state!
*really bad sleep...maybe because he was out of magnesium?
*refusing his juices...
*MAPS appointment
*hospital lost the bloodwork, need new labs
*heavy metals in tissues...
*starting Selenium and Calcium
*1 year with ABA!

Friday, August 5, 2016

Year Three, Week 6 (110th Weekly Video!)



In this video:
*choosing TV (and interacting with us) over iPad
*chewing on his shirt collars, but putting on his shirt independently!
*"give me""shoulders"
*refusing juice (and supplements) in favor of water
*we received a giant bill from the hospital (for no reason)
*new homeschool year!
*Bu hurt his finger :/
*Student's last day

We got some not great news on Bu's labs, but we are speaking to the specialist next week, so I decided to leave that for another time so I can speak to it in detail.

Monday, August 1, 2016

Year Three, Week 5 (109th Weekly Video!)


In this video:
*toilet flushing to stim!
*needs more practice on signs for "tete", "all done" and "help"
*detailed notes on MB12 shots, and one year since the shots began!
*playground! so independent! such great turn taking!
*AAC and Boardmaker, using drawings to identify/represent real-life items
*"yes" and "no" are all but PERFECTED.
*telling me when/where's he's hurt. Such amazing progress in communication!
*asking for baths when he's ready for bed
*wants to stim with the shower :/ but he's also interested in drinking from cups!
*could potty training ACTUALLY be in the not-so-distant future?