It’s ok to lose as long as you try

I’ve been meaning to write for a few days. Life has been hectic the past 2 weeks and we’ve hit some emotional road blocks.

A note came home this week from M’s speech therapist at school. She was asking to connect with his private therapist as she too is now seeing regression. She listed task avoidance, self-injury behaviors (hitting himself in the face/head), scripted language/echolalia, and screaming as new problems during her sessions. She had to keep him in her room for an hour Monday instead of 30 minutes because he refused to finish his work. They can’t reward that type of behavior by letting him off the hook, so he had to get through it. Ms. Jenn is on medical leave this week and spring break next, so unfortunately we have to wait for her to receive the school’s email.

Tomorrow we have our 2nd in-home pre-k meeting. I don’t know why they do this. I assume it’s to check on the child’s environment but that’s just a guess. They go over progress and short comings. I am going to use the time to address the lack of communication and his regression. I have a theory that they’re not fully admitting to his current behavior bc that would mean they did not meet his IEP goals for the year.

Speaking of IEPs, we have THAT meeting next week. That paper came in the mail yesterday. You have to accept their date and time too, otherwise it’s a nightmare to schedule. My next week looks crazy. I have so many appointments for different things that I am not sure it’s all going to work out. K is going to take the afternoon off to be there as well. I feel like we should have an advocate but it’s too late now. He is not in the right classroom and the peer modeling they said would help has done nothing.

The ADOS 2/Psych retesting is next week. That’s 4.5 hours I have to subject him to a bunch of doctors observing him. He tends to do ok in those types of appts bc he’s been in multiple therapies for a year. He’s used to “performing” for them. The problem occurs when you’re not quizzing him. Let’s hope they see his true colors bc we are absolutely drowning.

Enough about that. I feel it overwhelming me as I think about it.

S has been a handful lately. He joined an elite b-ball league a few weeks ago and was excited to start. I was concerned because I know the coaches and they aren’t messing around. They have a winning culture and a tough love coaching style. They will and have made kids (unintentionally) cry. I’m not raising a NBA player, but in order to grow he needs instruction from people who know what they’re doing.

He had a great first practice. I had high hopes for his first game. Ha! His 1st game was last Saturday. On Thursday he went to an overnight birthday party where he stayed up until 2 am. He was off Friday and an absolute bear. He still didn’t seem rested Saturday, so we let him hang around the house while we did errands hoping he’d get some rest before game time. M was awful that day. I mean, out of control terrible.

K ended up taking S to the game while we stayed back. He FaceTimed me so I could watch and I couldn’t believe my eyes. S was putting in 0 effort. He even walked in transition once. I was furious. First of all, this is an expensive league and he begged us to be a part of it. Secondly, I know these people and his defiance was embarrassing. Thirdly, not trying is not who he is. The coaches ripped him and then I did when he got home. It was not my finest parenting hour. I don’t care if he loses. They can lose every game and it would not matter to me. If you lose trying, so be it. The problem was he did not try. I don’t want to have that conversation for 8 weeks.

K is doing well and I am ok. My new medicine could probably be upped, honestly, but I need to take a little accountability and get ahead of my mood swings when I can. I have my first regular therapy appt Tuesday. Monday is my final diet trial and sleeve class. After that, I guess I await insurance approval and go through the nutrition  appts and 10 day pre-op diet which will not be pleasant. Theoretically, if I decide to go through with this, I could be recovering by May or June.

Time to pick M up from school.