Thursday, October 29, 2009

Meeting Linda H. / Fire Truck / SL Class - a long post!

Today was our 2:45p meeting with the teachers and the autsim coordinator. I got the kids in the car, waited for a train, and then threw the little ones in the double stroller as we walked quickly up to the school. Nikko walked beside the stroller; I couldn't hold his hand and since he was familiar with school I figured it might be awkward if I made him sit in the stroller. We sat for a meeting with Linda Hoeck, Ms. Winters, Mrs. McCarthy and Mrs. I. Linda was really informative and impressed that Nikko is able to imitate better and generalize what he learns. For example, he learned the word GO and used it in different activities that day such as the toy school bus, running down the hall and the scooterboard. If he didn't generalize well or at all, he would have learned the word GO and only used it when prompted with the school bus, wouldn't use it at other times or in other situations. Instead of jumping forward and putting us in touch with ABA service providers, the teachers, Linda and I discussed Nikko's capabilities regarding imitation and ability to use picture schedules and PECS (Picture Exchange Communication System) pictures. He is learning how to make choices in Speech Therapy and can learn a sign rather quickly, especially if it is food motivated. We decided that he needs to get really comfortable with exposure to the First/Then concept, as well as requesting things via PECS picture, before making the move to start ABA therapy. He's a good candidate for it, she said when I asked, because he can follow directions and can generalize. They are going to make more pictures for me, come to the house and teach me how to use pictures in our daily routine, and then Linda will work with me to set up ABA help. From what I understood, and will probably be explained again, a program is developed for what we want Nikko to accomplish, or behave a certain way, or pay more attention. Then, college kids or adults are brought into our home to work with Nikko on these skills. I guess the people rotate, it's not always the same person, but maybe they will have nerves of steel to work with Nikko. Linda mentioned a figure around $12/hr for some people, so we'll have to see how this would fit into a budget. Linda said we could try it for a few hours during the week, then see how he progresses after say a month, knowing we aren't completely "locked in" to the services if we so choose.

Something else to note: I asked a surprising question that I think caught the OT off guard a little bit. I asked them, "What does Nikko do in the playground?" Just about every day they go outside for a short recess. I've read on a few autism forums that some kids are left to their own devices and end up stimming by themselves instead of interacting with others. I wondered if this was happening to Nikko, so I asked. Ms. Winters and Mrs. McCarthy honestly couldn't tell me because I think they don't go outside for recess, that someone else takes the class. Mrs. I the OT shifted a bit uncomfortably, didn't look at me directly, but admitted aloud that Nikko tends to run back and forth on the wobbly bridge, part of the climbing apparatus. She said that she has seen the other aide help Nikko to engage in the past, but he does tend to run back and forth when outside. I didn't criticize anyone at that point, since this wasn't a parent-teacher conference meeting, but I will bring it up again later in the hopes that maybe Mrs. I will now keep an eye out for Nikko and hopefully tell the other aides to get Nikko more active with his peers or on different playground equipment so he doesn't get stuck in a rut. Granted, the wobbly bridge is in the middle of a lot of activity so he's probably surrounded by all the kids as he runs back and forth, but that doesn't mean he's engaging with them in any communication or interactive play. Hard to do for Nikko regardless, but still something that should be worked on. I learned this from reading the autism boards. Thank goodness for those!

During the entire meeting, Ronin went to play with the vast array of toys in the schoolroom. Audrey clung to my leg and managed to venture around Ronin for a short while, and Nikko was trying to climb into my lap, fighting Audrey away. I think I looked a bit harried to the teachers, but hey, that's my real life. After the meeting, while wheeling Ronin & Audrey back to the car while Nikko walked, Ronin started getting upset because we were leaving the Fire Truck behind. This escalated in the car and did NOT get better. He was screaming for the Fire Truck. I tried to explain to him that it was the school's Fire Truck. We don't have one. We don't own it. It has to stay at school. If he's good, then tomorrow we'll find a nice Fire Truck for him. Well, OH MY GOD, nothing was placating this boy. Very reminiscent of the fire truck incident with Pete the Speech Therapist where Ronin was unrelenting and would not stop crying/screaming/demanding for it. Ronin started coughing and heaving, but he didn't have much to throw up, only foamy spit this time around. I tried to ignore him and remain calm, but his constant crying and screaming blew up the anxious bubble in my throat and I was screaming at the top of my lungs for him to stop asking for the Fire Truck. He didn't stop, just continued at his relentless pace. My throat was so hoarse and I got a headache. I put Audrey down to nap and forced a snack upon the boys since we'd have to go back to school in two hours for the Sign Language class. Ronin finally did stop to eat Veggie Sticks, thank goodness, but my temper had flared up so high that everything was annoying me. They made noise with the pumpkin pails I bought. Nikko started turning on and off the living room lights and I was furious that the boys were fighting at top volume while Audrey was napping. They woke her up. I was so livid. While I was feeding her peaches, the boys wanted peaches and I didn't want to feed them any more because they just had lots of snack stuff. I stood in front of Audrey's high chair and started heaving sobs, then started wailing that none of my kids listened to me, why did they treat me like crap, why why why, all that stuff. Ronin noted my tears and said, "Mommy. Sad. Cry." I sniffed and agreed. Then he ran off. That's the extent of his empathy.

I rushed to get us out the door to the Sign Language meeting. Denis met us there. It was in the Library/Learning Center of the school. I was looking forward to having fun and learning some signs. That SO did not happen. There were quite a few parents and kids in attendance, including Sophie and her folks, plus two other moms I saw from the first PEPS meeting. Nikko would not sit still in his green cube chair. Ms. Winters was singing the songs using signs and being very outgoing, which was great. Mrs. McCarthy was taking pictures and acting as a human barricade to Nikko. I was wrestling with a very active Audrey, who was loving a little platform ramp and was toddling around the chairs happily. She kept climbing into Nikko's green cube chair, gripping the back of it, and almost falling head over the side of it. Mrs. McCarthy caught her once. *phew!* Ronin was a big handful. He saw another kid that brought a Lightning McQueen and a The King car so he kept trying to grab those. Denis tried to let him play in the back of the room but he wanted to climb up some stairs. Nope. Then he seemed to remember that the Fire Truck was in this building so that was on his mind. There was one point when Ronin sat down and was somewhat interactive with the songs, but when Ms. Winters signed COOKIE I cringed inside because that was a death wish for us. Ronin immediately turned to me signing Cookie and saying it loudly. Nikko, who was in my lap, also signed Cookie furiously and got up to look for the food bag. Ms. Winters was signing CHOCOLATE COOKIE and Ronin was having a fit because that's what he wanted. Can I just say UGH!!! We left at the end, with handouts, and I was mentally and physically exhausted from the school afternoon. Dinner at home was late because everything was late tonight. Nikko had no appetite for nuggets and grapes, but wanted handfuls of Cheerios with his juice. WHY?? Ronin was hungry, and was whining about the Fire Truck, then he wanted rice. Unfortunately he got into a coughing spell and threw up most of his dinner. GREEEAAAAT. The only saving grace for the evening was that Nikko pulled my hand into the living room and signed MORE. "More what, Nikko? What does Nikko want?" He signed MORE TICKLE. I happily gave him tickles and he laughed and laughed. Ronin joined us and I tickled him, too. Audrey threw herself into the pile and I tickled her, but only a little bit because I didn't want her crushed in the melee. Denis came in and hung out with the boys while I went to give Audrey a bath. Bedtime didn't come soon enough. I've got a huge pile of kid laundry in, have to run the dishwasher, wash the floors, then try to catch up on papers or the autism forums. Tomorrow is Nikko's Halloween party at school. We're not going to the Halloween Hoopla in his classroom because after today's outings, I would not be able to handle the little ones in a hectic environment, along with Nikko crawling all over me. I'll miss seeing him in action, but the teachers will have to care for him this time around. Maybe next year.


  1. Hon, how old are the boys? I know Audrey is a year old, I can't remember how old Nikko and Ronin are. I'm so sorry things are so ungodly difficult right now. Autism can really take it out of ya, and so few people understand it. When A was in his full SPD mode a few years back, a friend of his with Asperger's was a godsend. His mom and I knew the other could handle both boys in a pinch, and that knowledge helped both of us. Things are better with A and his friend (God bless OTs), but that "got your back" is still invaluable
    I wish I could help, hon.

  2. Nice post - pecs pictures ..Keep Posting

    pecs pictures

  3. Thanks, Jen, for the wishing to help. :) Nikko is 3 and Ronin is 2. It's a handful, as you can see, but I'm hanging in there. I wish I had a friend that had an ASD kid going through the same things we are, but I haven't found that person yet. That's why I'm always on the boards, reading and learning.

  4. You'll find someone as you read and learn and reach out. When A was younger I knew no one, so it was hard. Very hard. It does get easier. Three kids under 3, with varying issues...hard, so very hard.
    And I can't comment here with my current site, so I'm using an old one. :( Sorry!