We drove Southeast of Syracuse to a attend a Valentine Dinner put on by David’s Refuge. Volunteers there watch our special and typical “kids” while the parents get treated to a date night with other special needs families and a dinner. It was a long drive for us to risk Teale’s behavior, but we decided to try. We had heard such nice things about the experience from other families. The kids basically get spoiled. They have a terrific time with hundreds of kind volunteers, who have set up an indoor carnival. Teale loves being with typical teens and it sounded like there were plenty of sweet people volunteering, so we were hopeful she’d have a great time.
Unfortunately it was a way too early morning for Teale. Her moods have been rough for weeks and waking early has been a huge contributing issue. Then add in the fact, we were trying to teach her about appropriate behavior on her weekly Wegmans trips with Mark. She’d had several weeks of very crabby behaviors at Wegmans, growling at Mark and at friend’s he would bump into there. We needed to change the dynamics of her controlling the situation. We decided last week to emphasize she was not the one in control, by not allowing her to go this week. Picking to have her stay home from her beloved trip to Wegmans on the same day as something new, looking back, may not have been a good decision? She had a small rage after we told her she would not be going, so, I occupied her as Mark and Gwenn snuck out the door. Her acceptance that Mark had left seemed hopeful. We'd be able to use this example in future weeks, but occupying her without errands would make for a long day. I decided to do Teale’s hair in curlers, to kill some time. She had gotten the curlers for Christmas and she loved the look, but patience while her hair dried was tough. We weren’t yet telling her about our special night planned. Telling her too early starts the questions and the anxiety, so we’ve learned to tell Teale special plans very last minute. As I did her hair, the questions started, why are we doing her hair, who will like it, who will see it, over and over... I then made, what I think was, my second mistake leading up to our night out. About noon, with hours to go before we had to leave, I told, her about the fun night she would be attending. Teale's anxiety over where we were going, what she'd do, who she'd be with, etc., was horrible, from that moment on. It was especially difficult since we couldn't answer her unending questions without ever attending this event before. Teale unable to accept the answer, "we don't know." She would waffle between excited and anxious all day, what we classically call, "a roller coaster day." We just couldn’t seem to get her soul comfortable.
Our hope was that Teale would sleep on the way to the event, the drive was over two hours. She generally falls asleep fast in the car, even short rides at approximately mid afternoon often causes her to dose. We were sure she'd feel better after the drive and the evening would be fine. Well, she did not fall asleep, she just switched the radio and asked questions, constantly. It was an exhausting trip and completely worrisome. Now how would the evening go? The event started at 5:30pm and with her already being up over twelve hours, how would she be? If we had stayed home, she surely would have been in bed by 6:30pm. The nightmare of this day would have ended early, giving Mark and I time to recover. All the mistakes of the day were spinning in my head. We stopped at a Wegmans near the event to get her dinner and decided we might as well let her have caffeine to boost her and get her through the event, this was possibly our third mistake. Teale had started liking a cup of coffee in the mornings with me, so she had coffee at about 5:30pm. It was a desperate measure, just hoping to salvage the evening, after such an exhausting day and long drive. Every fiber of my soul was spent and worried, I just couldn't believe she hadn't slept on the drive and her questions about the event were increasing in intensity. Our responses not helping her, at this point. All I can think about is that this date was one of my worst ideas ever! I was filled with frustration and guilt that I had ruined our day. My agitation increased with Teale's. I was starting to think, turning around and going home was the best idea. We could put her to bed and salvage the rest of the night at home. Mark was frustrated with me, rightfully so, but if you tell someone who is upset to calm down, well, it's not going to help them to calm. Mark made that mistake! I knew I had pushed for this date, so I already felt awful, his being frustrated by my feelings, made it worse. I was on the verge of tears. So when we couldn't find the building and Teale's anxiety increased more, I knew I was feeling fragile. We tried to find the building where the kids event was, but then gave up and went to the building we figured our event was at. I tried to quickly go inside alone and find out where the kids were, before Teale got out of the car. She was in a hurry, so finding out we had to get back into the car and go somewhere else didn't make her happy. We found the correct building easily this time with directions from the people at the adult event. The church that hosts this event actually has two buildings close to each other. Getting out of the car, Teale started melting down. Now she knew we weren't going to be in the same building with her. Processing for Teale is slow, her head was spinning and questions were being bombarded at us. We weren't answering "correctly." At this point, I'm sure getting back in the car is our best option, but we had come so far... We get inside and the people greeting us couldn't be any nicer, but Teale is escalating. She starts yelling, walking away a bit, we know we now need space and time. We are already late for the 6pm dinner, as Teale gets louder and more unpredictable. The volunteers try to help, pushing in, trying to calm Teale with reasoning and touching. Both of which are not helpful when Teale is escalating. We need space and time, period. Mark goes to talk to volunteers after Teale has crumpled up her name tag and wants it fixed. He gives them our basic survival guide, that touching doesn't help Teale and actually escalades her, plus we just need to deal with her alone. During that short time he is away, I stood near Teale, but not too close. She suddenly lunges at me and smacks me hard in the face. With absolutely no reaction, I looked around the room, realizing many people had seen her smack me. A few, in total shock, mouthed to me, "are you ok?" At this point, I'm fried and embarrassed, I just want to go home. Mark comes back over and talks Teale into going outside to calm down. It's cold, he's only in a blazer, Teale already had her coat off, but we stood outside while Teale raged. It was brutal, getting in the car wasn't a viable option either, she was actually wanting to go back in to the event, but she could not calm. Getting in a car would be very dangerous, so in the cold, we waited her out. The volunteers came out to check on us and Mark, politely, asked them to go back inside. The presence of others, often makes things worse. We waited and waited, but calm wasn't, coming...
I was freezing, so Mark told me to go to our car, there, all my emotions finally came out. I was balling, totally frustrated, angry, guilty feeling that I had suggested this date, that I had made mistakes all day, that probably brought on this moment. I just wanted to go home. Texting between a couple we were supposed to meet at the dinner and my sister in law, seemed to both help me and cause my emotions to spill over. Showing emotions in front of Teale causes her's to rise, so I often remain stoic. It had been a long day of disappointments and I was worn. I had so much built up frustration, weeks of questioning why Teale has been off. We'd seen her pediatrician several times, hoping it was something simple like an ear infection. We had seen an ENT who diagnosed TMJ. This possibly why she's waking so early and seems to have more headaches. We saw her psychiatrist to increase her antipsychotic earlier this week and we felt hopeful that did help, until yesterday. I was a mess, sobbing in the car, having a pity party for myself. I was worn and feeling like, even in the community we are supposed to feel comfortable in, we stand out. It was heartbreaking Teale was so uncomfortable in her own skin. I watched as Mark kept trying, as volunteers came to him again and again. It was freezing out, rain had started, an hour or so had passed. Teale's beautiful hairdo was ruined, her dress damp, she must have been frozen, totally worn and Mark too. He didn't want me helping, probably, at least partially, because he blamed me. I had made many mistakes all day that lead up to this. Walking into the dinner over an hour late, with bloodshot eyes was very unappealing. So even if he did finally succeed, could I pull it together? I watched Teale go after Mark, luckily with his height and strength, he could get away. Finally, they were out of sight and I was hopeful they had gone inside, but then I heard her again. An hour or so later and she was still sounding "on fire." Mark was walking toward me and I thought, good, we are going home! A guy was with him and another approached, I could hear the conversation, something about going in the back. The cold rain coming down more, I wished he had just gotten in the car. Fairly quickly, Mark came running back to the car, it had worked and he had left Teale happy. We drove to the dinner, me still apprehensive because I knew what they had witnessed and my own emotions were so raw. We walked in and I asked for the bathroom first thing. Staring in the mirror, my eyes blood shot, I worried about what others would think? Mark was getting a glass of wine when I came out, but they had run out of white wine, so I passed. Red wine can cause me migraines and at that moment, I already knew I was at risk. As we tried to compose ourselves before walking in, Mark must have said something that triggered me. I could no longer hold it together. I was overcome with emotions and sobbing in Mark's arms, my face still hurt from Teale smacking me and I was just very sad. The whole day had been a huge disappointment. Mark had dealt with Teale over an hour and now I'm sobbing on him, good Lord... He suggested we just go to a bar, but then again, friends were there. I eventually pulled myself together, went back into the bathroom again to touch up my running face. Friends surrounded us, big hugs from all and we sat down for dinner. I probably wasn't the best of company, but we stayed. Mark even got picture texts of Teale having a great time. We had an hour or so to be with our tribe, meeting other special needs families that get this kind of thing is always nice. We went to get Teale and people flocked us, saying how great she was and how much fun she had had. Often after a big rage, Teale is especially even, like the release of the rage, resets her.
I went to find her and was treated with that beautiful smile and a loud, happy "Mom!" At that moment I was able to see God again. The people who had been assigned to Teale, raved about how much fun she was. I could barely talk, tears still so close to the edge of my eyes, I knew speaking would flood me with emotion again. I thought about how incredible it was that she was so very happy and the people with her, seemed like angels on earth. They could not have been any more kind and generous. The night had been so very tough, but God was still with us and as I tried to thank them, the tears came again. Not out of sadness though, but because, in the end, Teale taught grace and love to more strangers. If I had to bet, there are probably many volunteers still talking about Teale today. They may be wondering how we live what we do. I wonder that a lot too, but I also wonder how I ever lived without Teale? As we left the event, Teale told us about throwing balls, making her bears and especially the nice people she had been with. It was sweet, but in a bittersweet way, if only drop off had gone more smoothly. Ironically, as we headed to the car, Teale asked when she could come back. God sure is funny....
