Thursday, January 6, 2022

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 :-) 

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