Friday, June 12, 2015

Our journey into the world of therapies has just begun

    Yesterday Nixon had his OT (Occupational Therapy) evaluation. It was....rough. He went into full-on sensory overload and had a resulting sensory overload meltdown when it was time to leave. Thankfully, Mac was with me and was able to pick him up and carry him out of the office. Nixon was doing his ear-splitting screeching and no one needs to hear that for any longer than absolutely necessary.
   On the way out, I was talking to the therapist who had evaluated Nixon and there was a woman in the waiting room. She was very kind about Nixon's behavior and remarked about how calmly I was handling his outburst. I thanked her and just responded with a comment of "It is what it is, if I'm not calm he feeds off my emotional response and that doesn't help any of us" and gave a uncomfortable chuckle. She smile kindly and said "You're doing better than you realize. You're smiling and already using coping skills to handle the cards you're dealt. You're going to do just fine, Hun. Even if you don't believe it right now. You're special family will be just fine."
    I thanked her again and left. I left before she could see the tears her kind words had caused to well up in my eyes. I choked them down as I headed down the stairs to join Mac, who was struggling with Nixon at the car. I handed everything in my hands to Mac and I gave him a break, because I saw that he was reaching his max and needed one. I went after Nixon, who was resisting getting into the car. I chased him down the sidewalk and saw his smile replace the scream. I picked him up and carried him to the car, the screaming returned. I buckled him in and when he was quiet, I made a deal with him: 2 minutes of quiet and he'd be able to play on my phone.
   After 5 minutes of silence, I handed him my phone.
   Mac and I spoke about the morning on the 25-minute drive home, because until then Mac had really only heard about these meltdowns but never really witnessed one from beginning to end. I explained that when the screeching starts, rationalizing with Nixon ends. At that moment, removing is the only option but it has to be done without emotion and mostly silently. It's hard, because during those moments I've had Nixon tell me I'm awful, I'm not his mom and it's his worst day ever. Those things are hard to hear but I know he doesn't really mean them, he's saying things to get a reaction from me, which I've learned to not give him.
   I don't feel like I'm doing anything extraordinary as a mother. I'm living life as best I can and learning to accept what our life will be like. It's not like everyone else's but sometimes I feel bad that everyone else won't know how awesome our life is!

    In other news: Next Tuesday morning, the 16th, we have our Central IEP board meeting. I'm very anxious about this meeting. There will only be one representative from the school present and I'm hoping to be given a chance to address some recent issues that Nixon has mentioned at home.
    The most upsetting happened last week. Nixon was having a bad day, and in the middle of him recovering and deescalating his behavior, he was laying on the floor face down, he said "I'm sorry I'm being such a brat, Mom". I was completely taken aback because I call him a lot of things ("booger", "punk", "tushie", to name a few) but never "brat". I asked him why he'd say that and he said "Well, sometimes [aide's name] tells me that when I'm being difficult". Now I have an issue with an adult name calling a child in her care who is obviously having a hard time. He's not a bad kid, he's having a difficult time! Mac was standing right there when Nixon said this and I thank gods he was because I nearly lost my mind! But, I can't do that because Nixon will misinterpret my reaction as something he did and react defensively.
     I haven't even been able to bring this to the school because I already know it'll be brushed off as "Nixon misunderstood" or something like that. They simply don't understand that he doesn't lie. He is incapable of lying because he doesn't understand the concept. He tattles on himself for things he does wrong!
   The other issue, is apparently, someone at the school has taken upon themselves to tell Nixon he's not returning to the school next year because "you are a bad kid who made a lot of bad choices and will be going to a new school next year." He won't tell me who told him this, but he's told both Mac and myself that he was told this at school. It was no one at the school's place to tell him this! It's as if they stopped caring about his emotions and just want to hurt him and see him lash out!

    Only a few more days of school and he's out of there. It's taken a lot of willpower not to start cussing every one of these adults out for the pain and negative self-esteem issues they're causing my son to have! He's 6, he's a gentle soul and he cares about them so much he tries protecting them even after they've said hurtful things to him!