Weight of the World

 It's amazing how there are times in your life that a series of difficult things happen very quickly...and it can empty you and fill you simultaneously. That's how I feel about the last 36 hours.

Matt started choking again on Sunday. I think I noticed it less because it was dramatic (just a little difficulty swallowing and more overstuffing of his mouth) and more because of Adi's reaction to it.  I did notice that is seemed to scare Matt though.  When he is choking, his reaction is to bang his head with his hands and stand up abruptly--that did happen and he did seem a little frightened by it.  However, anytime Matt would even touch his head, Adi would frantically point it out with absolute terror in her voice and fear in her eyes.  That strong of a reaction surprised me a little bit and prompted some reassurance as well as a little bit of irritation--it felt like an over-reaction, but we tried to be kind.  After it happened three times that day though, I'll admit that the Mamma gut started talking. 

Fast forward to Tuesday.  I'm out with friends and Todd has all three kids and is feeding them dinner.  I think I made it a tiny bit spicy and Matt started to bang his heads with his hands--also a common reaction when something is spicy--and make a noise in his throat like he is trying to clear it.  Boy has ZERO spice tolerance so we do see this reaction frequently.  This time, however, it was a trigger for Adi. Todd described this to me the next morning and then, a few minutes later, Adi came and climbed into bed with me. 

I just cuddled her and let her talk about how scared she was the night before and how frustrating it was to feel like no one understood how she was feeling.  She said she almost felt stupid because she felt SO anxious and knew it was not something either Todd or Liam could relate to. As her somewhat anxious mother, I CAN relate to those feelings, so I tried hard to validate how hard it can be to process something like that experience with Matt and that it is very normal to feel afraid when something reminds her of it.  We went about our morning, but when Matt woke up, I saw exactly what had happened the night before play out again.  

Matt is very impulsive and right now, he is grabbing things and shoving them into his mouth.  He literally woke up and started walking around the kitchen grabbing anything he could find on the counters (mostly edible but not all) and shoving it into his mouth. Adi would FREAK OUT in response--scream, yell at him and me, and be stuck between helping and running away from the situation out of fear (fight or flight was in full force).  So I was attempting to wrangle Matt and keep him safe while trying to keep Adi emotionally safe.  She finally just came over to me in tears and I hugged her while she cried and explained how terrified she is. I called a mental health day (kept her home) which calmed her significantly and we were able to get Matt on the bus without further incident. 

We talked about her feelings throughout the day and at one point, called a friend who is a mental health professional to ask for some advice.  This angel of goodness came over to our house about an hour later to talk to Adi about all of this and do a little EMDR which is supposed to help with acute traumatic stress disorder which she is clearly suffering from.  I was able to sit in and watch/listen as she attempted to unpack all that is going on in her little 10 (now 11--happy birthday to my girl) year old brain.  As she did, I was fascinated, devastated, scared, helpless and grateful all at the same time. Fascinated because there is so much interesting thought going on in that girls head and it is so intriguing to see how a professional skillfully asks the right questions and has the perfect responses to elicit that information.  Devastated because my daughter is suffering--I feel like I got a glimpse into the torture that goes on in the brain of someone who is truly anxious and trying not to be.  Scared because I don't know what this means for the future or if it something she will always deal with AND because I also see a little bit of it in myself. Helpless because I can't make it all better--there is no quick fix to this problem that seemed to emerge so quickly.  And grateful because I knew that what I was learning was helping to clarify some things that confused me previously about my daughter. 

I learned that Adi feels responsible to keep Matt alive.  Talk about the weight of the world.  As she unpacked the memory of what happened--the look on his face, his eyes rolling back in his head, his body going limp, what he was wearing, the stains on his shirt from when he threw up a little, where she hid in the kitchen, the sounds coming from his throat as he was first starting to choke, and then the lack of sound afterwards--I realized that she was hanging on to every detail, but didn't know how to piece them together in a way that allowed her to process it.  She knows rationally that Matt probably won't choke like that again, that we know what to do if he does...but she does not feel like she is capable of helping at all.  She felt helpless then and therefore assumes she would be helpless again in the future.  At the same time, she doesn't want to leave me alone with Matt because I wasn't strong enough to help him then...so she worries that if she leaves me alone, he will die.  If she is there, she could at least call 911 because she thinks I couldn't do both.  At the same time, she isn't sure she could because her body wants to run away.  So she feels like she has to stay with me when Matt is around, but is so triggered by Matt that she is literally incapacitated and panicking in his presence.  

I sat there behind Adi while she described this with tears pouring out of my eyes.  I can't take this away or even, through all the rational discussion in the world, help her to reason through this.  This is in her brain and she is going to need more help than I can give her to sort it all out.  The tragedy of it is how it is seeping into other areas of her life as well.  If a kid coughs at school, Adi has a visceral reaction to it.  If someone talks about choking, she gets angry because they might make light of what it means to choke since they never stopped breathing...and that's "real" choking to her.  

This morning I had a meeting with the elementary school intervention team--it includes the psychologist, school counselor, principle, intervention specialist, Adis' former and current teachers, and other specialists.  Adi has struggled with dyslexia for the past few years and some of the delays in her academics are feeling more urgent and pronounced to me as she approaches middle school.  So I insisted that we have a meeting like this to discuss the possibility of further intervention (for anyone concerned about their kiddo academically, it is your right to make this request where teachers have to look at data vs their gut to suggest it...and it has to be pretty dramatic for data to drive them to do an eval).  As we talked through my concerns and their observations, I realized that there is a HUGE part of this that is fueled by this same anxiety piece that has become painfully obvious to me in the past few days.  As they shared about the interactions she has had with teachers and peers, I started to see much more clearly what is going on with her--things that would never caught my attention before were keys to unlocking this little puzzle.  I feel like, as a result, we were able to piece things together in a way that will work to her benefit and they all agree that she needs to be evaluated for an IEP or 504.  

Here's the thing...that means something big to me.  It isn't just the right step...it is a hugely emotional step for me.  I have been through this with Matt.  It is hard, time consuming, emotional, and kind of scary to take a magnifying glass to your kiddo's struggles.  You don't expect it to feel hard, but it is so draining.  Maybe I feel that way because it was so dramatic with Matt.  Regardless, it buried me this morning.  I may have burst into tears in the middle of that meeting as the weight of it came crashing down. In my defense, I went into the meeting a bit drained and frazzled...Matt had woken up at 3:19 a.m., we had just learned of a COVID exposure the night before, and then I had discovered a giant poop that had fallen down his pant leg and wrapped around his sock just as I was walking out the door. So there were a few things kind of working against my fully-functional rational brain's ability to process it all. 

So here we sit.  I am no less buried, but I did just SIT for a bit when I got home from getting Matt a COVID test and dropping him off at school.  I am seeing more clearly the path moving forward.  The hard part is that I need help more than ever so that I have a second adult with me any time Matt and Adi are together, at least in the short term.  So Todd and I are talking through changes we need to make to both be home any time both of them are home.  I'm still trying to find more respite so that we are able to function through this phase.  But we WILL make it through this phase.  I had two angels that rescued me today to make everything that needed to happen today possible and as much as I hate needing help, I need help. The humility it prompts as well as the peek into the goodness in others that it gives me is inspiring.  Now, onward and upward....I have some phone calls to make :-) 

My Sloth Ninja

 Matt isn't exactly the fastest runner (he's quite disorganized and limps with limbs flailing when he runs).  He isn't quiet and stealth (he's probably the opposite).  But this kid can do a few things with the skill of a ninja and take me completely off guard. 

One of them is steal food.  Frequently, I have something I'm just about to eat--or I've saved the best bite for last--and it disappears from my hand or plate before I can possibly stop it from happening.  Well, one of the problems we are discovering with the ninja food-stealing skills is that Matt is so anxious to actually succeed that he shoves whatever he stole into his mouth as fast as possible.  Since his choking episode, we are noticing that he is choking FREQUENTLY.  And I think it's scaring him.  Today, for example, he had three separate times that he struggled with a mouthful and got that panicked look on his face and one of us dug food out of his mouth, or he spit it out, or we had to hang over the sink until he calmed down.  So this ninja skill is actually starting to make me a bit nervous.

The other one was newly discovered today.  I have pulled a muscle in my butt and I was REALLY uncomfortable at church, so every time Matt needed a walk, I took him.  At one point, we made it all the way around the church to the other side and, from the lobby on the far side of the chapel (opposite where we had been sitting as a family), Matt spots Todd.  He had been sitting peacefully, transferring himself from couch to couch...and then all of a sudden when his eyes locked on Dad, he BOLTED.  I tried to grab him, but missed. I started to hobble after him as quickly as I could, across the entire chapel full of people.  He got to Todd who was sitting in the back row of pews, but rather than walking in and taking a seat beside him politely, Matt threw a leg over the back of the pew, pulled his body up, stood up nice and tall on top of the pew, and then sat himself down on Todd's lap.  It was his equivalent of church parkour.

The good news is that doesn't happen often.  The bad news is that Todd and I could not stop laughing afterwards so I'm sure we were pretty disruptive.   

Mr. Hanky the Christmas Poo

 When Todd and I were first married, he introduced me to a South Park video called "Mr. Hanky the Christmas Poo" that he and his brother, Matt, thought was the most hilarious thing.  Well, this year, I would like to dedicate that video to our Matt who, through poo, gave us a pre-Christmas miracle. Let me explain...

First, I have to start with the ugly part of the story.  I have pretty profound anxiety about traveling in bad weather.  I hate it.  Not sure why this irrational fear has become so bad in the past few years, but compounding that with all of the stress in my life right now, my doctor recommended that I start taking an anti-anxiety med.  So I did as of last week.  Now, my body is a bit funky when it comes to new medications and sometimes I get emotional when I first start taking them. It's weird...I deserve to be made fun of.  

A few weeks before heading to Sunriver for Christmas, we realized that the weather might be bad and we also knew that we would likely want to take the jeep.  We can't fit all five of us and two dogs in the jeep for the 3.5 hour trip, so we ordered a canopy for the bed of the jeep which was due to arrive the Friday before we left and would solve our space issue.  Well, the morning of its pending arrival, we got notice it wouldn't be joining our family until February.  What?!  That created a massive problem for us because we now needed to figure out what to do with the dogs.  My only rule is that they not come in the jeep with us--we had done that once and it was a DISASTER.  Claustrophobic, chaotic disaster of epic proportions. So we started looking at options and, miraculously, found some angels willing to take care of our furry family members. 

The day of our departure arrives and Adi is very emotional.  There are tears, extra treats, extra bathroom trips to prolong our time at home.  She is sobbing and the dogs are making it worse by jumping into the jeep repeatedly as we are packing to go as though they sensed they were about to be left behind.  We get in the car and wait for Adi who is still in the house saying her 15th goodbye to the dogs, finally pulling out of the driveway with her in a puddle of tears.  Obviously we have hearts, but mine is apparently frozen because when Todd started trying to suggest we maybe just TRY to bring them, I immediately went into a passive-aggressive silent protest, only speaking the occasional (firm--as in through gritted teeth with a condescending tone) reminder of my only rule as it relates to the dogs. Rather than patiently wiping away tears and letting them come to their own conclusions about the safety risk it posed and the discomfort for all parties involved, I finally stopped imploding only to explode...loudly...with lots of snotty tears. I yelled at everyone in the car and told them to drive home and get the dogs.  When we arrived, I calmly told everyone I needed a break, ran upstairs and threw myself into a sobbing heap on the bed, defeated...mourning the loss of any semblance of "control" in my family, weeping over the complete lack of respect for my one rule. I locked the door, so the children came banging on it and Liam, finally picking the lock, walked over to my sprawled self and tried to give me a hug.  I rejected it...still feeling sorry for myself and needing to pout a little longer.  We finally all piled in the car--I had a fake smile plastered to my face at this point--and the kids put up a blanket barricade to protect me from the dogs (and likely themselves from me) and proceeded to do everything in their power to make me as comfortable as possible (there may have been some noise-cancelling headphones, eye pillows and other comfort items brought along as props to help in that cause). 

Now, all of that was prelude to the miracle.  Not the poo one--that comes later.  But this one is equally important.  In the midst of what could have been an epic disaster and which I anticipated being hours of torture, was the opposite.  Matt's iPad died about 30 minutes into the drive, so i thought we were hosed for sure and my entire family was going to realize how right I had been in my recommendation to leave the dogs behind. Nope.  Matt, no iPad, was an angelic passenger in a very squishy back seat with his two siblings and two dogs.  How is this even possible?  Miracle.

Now, Mr. Hanky's miracle came as part of this Christmas break.  I have wondered for YEARS how we were going to poop-train Matt.  Mind you, pee training was enough of a beast...and then he regressed and we lost all of that--he has been incontinent for over a year now and wearing pull-ups full time.  For months and months I theorized (along with doctors and others) why that might have happened.  Because it was coupled with other areas of regression, I finally gave up on trying to intellectualize it and just chalked it up to a Mom-fail since the incontinence got worse when I put the pull-ups on and I felt it only appropriate to blame myself for removing the obstacle (wet pants) to the downward spiral.  I know, I know...not my fault, but it was how I felt.  Well, one of the theories that we threw around for a bit was that Matt was also having poop issues at the time and perhaps he was having trouble differentiating between the push to pee and the push to poop.  I stopped worry about that theory though because I had, well, resigned to the fact that he was no longer potty trained. 

Fast forward to the week before this trip--all of a sudden, Matt decides that he has to poop all the time.  He talks about it in circles (part of his OCD is repetitive language) and frequently (SO freaking often) takes himself to the bathroom and sits on the potty.  He then flushes and walks out, 99% of the time doing absolutely nothing.  Well, I got a text that Matt had pooped in the potty one day at school--not once, but TWICE!  I danced and danced and ugly dance of joy, but assumed it was just a one-off little fluke.  The next day, poops again.  WHAT?!  Could this be a trend?  And then it was Christmas break...where all trends and schedules disappear into oblivion and we just try to survive.  

This is the miracle--just a day or two before Christmas, MATT POOPED IN THE POTTY!  I couldn't believe it.  He went in to the bathroom by himself, pooped, pulled up his pants, and came out.  I went in only to discover that there was pooped smeared across the back of the seat which clued me in...and a big giant poop in the potty.  A Mr. Hanky for me!  Don't worry--we took care of all necessary clean-up (still working on that part), but this miracle has happened a few times since!  Matt is sitting consistently, peeing frequently (and MUCH less frequently peeing in his pants), and occasionally pooping in the potty!  So in answer to my question about how it is going to happen...naturally.  When Matt is ready.  And I think it is starting!  Fingers are crossed....big time.