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Over the last two weeks, there have been innumerable changes.

Small changes, big changes, and some things that haven’t yet changed.


Q had a mapping appointment on Tuesday, August 7th. He tolerated the increase really well! We weren’t able to get a lot of answers in the booth this time, but he is acclimating to being tested in the booth. There were no tears, and even some very quick recognition in the beginning. For more on mapping appointments, refer to my TIMELINES post.

Per usual mapping’s tend to disrupt our ‘normal’. The increased stimulation lends to less sleep, more emotional sensitivity, and a general disruption in Q for a bit. He noticeably chews (on fingers, shirts, pillows) and we have always treated with cooling objects (ice, popsicles, cold washcloths) but our amazing team has reccommended these Chewies

- I have a sample pack ordered and on the way!

Q has started walking through stores with us, holding hands. For most, at 3, this is a feat. For US, for our family, this is an INCREDIBLE, indescribable JOY! We stopped at Lantmans one evening, and he pushed around a mini cart, and was observant, employed his listening and visual skills, and also attempted to treat our family to a $30+ steak dinner. Q put that package of steak in his cart with such conviction, purpose, excitement, and joy that it hurt my being to take it out and insist on the ground chuck.

Q has begun to look to us for appreciation, praise, or direction when performing activities. This is new to us, and appears to bring all sorts of merriment to him, and to us if I’m frank. Q already has the most incredible sense of humor, and I delight in his little being as much as I get frustrated at his merriment!

We’ve been working on toilet training at home, and Q (as always!) has his own ‘style’. It’s been a bit of yoga, as even with a stool to stand on it can be hard to navigate a toilet. In encouragement, Jim has been showing him how Daddy uses the toilet for guidance. In one of his encouraging episodes, Q was at rapt attention, and upon the conclusion of the tutorial, clapped mightily for Jim and gave him the ‘WOW’ ASL sign, then promptly flushed to toiled for Jim. Q’s joy at the smallest things and his celebrations are truly what has brought us this far in his journey.

His soul from the beginning has had a light, a joy, and a purpose that I’ve been lucky to be a part of.

To this, Q also used the toilet TWICE at school, standing!!!! With verbal encouragement from peers, he mightily conquered the task.

I study, I read, and I like to grasp a lot of knowlege. With toilet training, amidst all of our other basics, it’s fallen by the wayside. Mostly because I've been reading so much on CI's, and learning ASL, that my brain simply 'can't'. Trusting Q, his instincts, and his wonderful little mind, I have a feeling that once he ‘decides’ to do it, it truly won’t take long.

Q also accompanied me to a doctor visits, it’s one of our own personal family journeys to make doctors an inclusive place for him, as they give him noticeable anxiety and he KNOWS where we are as soon as we get there. Going with Jim or I, to alleviate his poking and prodding, and to see that it doesn’t hurt us, is the best I know how to handle this at our current juncture.

Yesterday, as the nurse took my blood pressure my little fella erupted into the best belly giggles, and pointed at me - as if to say “haha, momma! It’s YOUR turn now”.

I got a good kick out of it, and am still laughing as I write this.

When the doctor came in to look at my ear, Q literally laughed so hard he had to sit on the floor. I couldn’t even hold still for the doctor, because I got SO tickled at him!!! I’m not sure if my plan will work, but yesterday he had a grand time helping the nurse type, climbing up on the table and sitting (which of course he will never do at his own appointments *eye roll*) and generally bringing his joyous chaos to the office’s afternoon.

At the store, after sadly returning the steak to it’s rightful place and encouraging more budget friendly items, we continued on our journey through the store. Q avoided mauling anyone with the little cart, and we successfully made it to the check out aisle, where he even loaded everything.

It was amazing!

As we went to leave, Q decided he didn’t want to hold hands. Right now, in an outside parking lot environment, this is a hard no for our family. For safety, for learning, and much of it is my fear. I haven’t tested it yet, and I’m unprepared to emotionally - so it stays a hard no for now until we have more practice.

After pushing the cart in the store, unassisted and independent, this is not the answer Q wanted from me. I tried letting him hold a bag, I tried to get him to hold my mom’s hand, and I tried to get him to hold onto the bag that I was holding on to. He was very determined with declining all of these choices.

It turned into a stalemate with Q throwing himself down into a tantrum, getting furious at me, and me frantically attempting to keep him from hurting himself on the concrete, and to not cause a scene.

It hurts my heart for him, it hurts me, and it’s not a fun place to be with so many eyes attuned.

It ended with many tears on both end, and a struggle into the car seat. It was devastating and heartbreaking to me, as it was to him, after such a positive and joyous experience in the store.

This is our life. The great highs, the great lows, and finding existence mostly within the in between moments of ‘better than ok’.

Not having time to properly celebrate joys and accomplishments as we transition to another communication barrier.

I know Q.

I know he had something in mind that he couldn’t relay.

I trust Q.

I know that he was trying to give me information that I didn’t quite grasp, and though my safety rules and toddler tantrums are part of EVERY family life, for us sometimes it can be just the moment the thorn digs too deep, and puts us near an artery.

As always, we focus on the joys. In those moments I try to recall the ‘WOW’ and claps at the toilet, and the sparkle in the eye when picking out steaks.

I’m sure I can do better, but for now that’s the best I’ve got to keep us moving onward and upward on this journey.

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