Friday, March 5, 2010

The worst kind of afternoon for me / Speech options / Good ABA session (A LONG POST, HERE!)

5:45a Nikko cries out because he's awake. I go to him to possibly lay down until 7. Then I hear Ronin start waking up. His cries get longer and I'm with Nikko, hesitating about how to go to Ronin. I hear Denis get up and go to the nursery to placate Ronin, but Ronin won't have it. I gather Nikko and go get Ronin before Audrey is fully awake. We go lie down in the living room, and a frustrated Denis goes back to bed because he has to work. While Ronin falls back asleep on the floor with me, Nikko does not, and continues to babble at varying volumes. At 7a I give up trying to get any zzz's and take Nikko into the kitchen for breakfast.

Nikko had a good speech report today: GREAT with "give me" today for foods & family pix!

This was also coupled with an emailed response to the school team regarding what ST/OT services Nikko was getting throughout the week, as well as the possibility of looking into private speech therapy for the future:
He really had a great speech session today. The giving pictures and objects on request was awesome! He was immediately able to pick up your picture, dads, Ronin's and Audrey's on request. ABA must really be helping with that one. He matched plastic food to the photographs and gave them when I asked (banana, apple, hot dog, hamburger). He is repeating anything we are asking him to say. Now I am asking the team to have him repeat the name of things he wants/needs/uses and then take the object away from him and wait for him to say the work by himself. Like I was doing with the Wiggles DVD at your house? I want to have him pull the word out on his own without the model and not be reliant/echoing others. any times during the day that you can do that too would be great. You can really see his wheels turning to pull the words out. I am finding it hard though to pull him back from his verbal jargoning at times. We will keep pulling him.

Jean sees Nikko for OT 1-1 from 8:30 - 9:00 on Tuesdays and also at centers on Wednesday. She works with him at arrival and dismissal routines, also in the sensory motor group on Tuesday from 10:20 - 10:50. She also oversees his sensory diet.

I see Nikko during group language everyday for 10 minutes, at centers twice a week and then I pull him for 20 minutes twice a week 1-1.

We talked about the idea of private speech. We can't really recommend private therapy to parents. He is at a prime language time now but will be getting a lot of communication work during ABA too. Many families do find private speech beneficial especially when there are breaks from school like over the summer. Have you checked with your insurance company to see if they would cover it?

Please don't ever be embarrassed to ask questions!!!! That's what we are here for!

Maria came for therapy at 1p. We all went downstairs and Ronin & Audrey were eager to play there as well as interact with Maria. But when it was time to go, Nikko turned to me to kiss me good bye and I said to him, "Have fun! See you later!" We went upstairs and I tried to finish giving Audrey her lunch. I could hear some of Nikko's whining in the background, and twice I actually stood in the hallway because Nikko sounded like he was protesting something. All I could hear was praise coming from Maria, as if she were engaging him in an activity that he didn't want to complete. I heard her tell Nikko to clap his hands. I couldn't tell if he actually did; I think she'd tell him and then sit back and wait until he did, or until he sat doing nothing and then she'd ask him one more time before she did hand over hand. That, in essence is how the "drill" portion of the therapy was supposed to work. But when the session was finished and they came upstairs, Maria said he had a really good session. He did very well with matching, saying our names (daddy, Audrey, mommy, Ronin) and picking the correct photo, which she said he did perfectly. She asked me if, when Nikko gets frustrated, does he scream or make noises? I said yes, he's begun to whine and the whining starts cranking up if he doesn't get what he wants. Maria suggested that the school make a visual prompt on a ring, using words such as : Wait, Stop, Go, Help, Break, Bathroom. The visual prompt is basically a picture to represent the action. The school team uses a big metal ring with a PEC picture of an action on it, so when a teacher tells Nikko to STAND UP for whatever reason, they will tell him and then flip to the picture of a person standing up. This reinforces the verbal action with a visual aid, or prompt. Ta-daaaa. Two other things Maria talked to me about today were note-taking, and respite. She said that if we wanted someone (her) to come take notes during Nikko's IEP meeting (June 4th) then we can ask her and she'll do it, to keep track of who said what during the meeting. Her fee would be less than the current hourly rate. It sounds like a good idea, since I may have a hard time trying to keep track of everything going on in the meeting, but I told her I'd talk about it with Denis. Maria also asked me if I ever use services via the school or support groups to take a break. Um, no... How about family members? Um, sometimes... She told me that especially over the summer MGB Services gets college students to help, or babysit, and that for a small fee (of course) I might want to try it. I told her that I would seriously consider that, because I really do need to break from these kids on occasion. Or I'll go mad.


Ah, what a pity that my day didn't end there. Ronin was in his room napping when ABA was finished. Nikko was in the living room, Audrey was floating between rooms, and I was at the laptop writing on the ASD forum about the possibility of using melatonin for Nikko and what others' experiences were with their kids. I think Audrey was complaining about something when I realized that Nikko had been pretty silent for a while. I got up to check on him in the living room and he appeared in front of me with his hands covered in poo. I grabbed his sleeved forearms and tried to quickly assess the situation. It was bad. I glanced at the couch armrest near the mirrored wall and saw streaks. I looked at the table near the window and saw streaks. I stifled a scream and tried to scan the floors and trace where he might have been camping out. I noticed one of the ottomans had some streaks. Later, I'd notice one of the Thomas chairs was a victim, as well as the chaise lounge end of the sofa and one of Ronin's sweatpants that became a victim by association. I started dragging Nikko toward the kitchen because he was starting to rub his hands together and I could see some not-so-dried flecks fall to the floor. Then I saw Audrey in the doorway and I stopped cold. No way could she be on the loose, so I had to briefly let Nikko go, scoop up Audrey and put her in her high chair. Thankfully her bottle of milk was half-full and already sitting there. Then I quickly seized Nikko's forearms again and ran to the tub. I put him in, stripped him down to his diaper, turned on the faucet and sprayed his hands full of foam soap to occupy him. I ran back to Audrey and dumped a bunch of animal cookies onto her tray. I gathered paper towels, Lysol wipes, plastic bags for garbage, and Carpet Resolve. I kept running back to check on Nikko while I raced around the living room, spraying Resolve on the couch and rubbing off the streaks, then reapplying and rubbing again. I scrubbed the table, put the Thomas chair up high so I could wash the cover later, put all the blankets on the floor in a laundry basket because I had no idea if any flecks fell on them, gathered a toy or two that got smeared, and kept scanning the floor for obvious things to step on. Ronin woke up and was calling to me from his room, but I kept him in there as long as I could before taking him out and plopped him into his high chair, along with some animal cookies. Nikko had already stepped out of the tub numerous times to see what I was doing, so now I could finally get to him and scrub him down. While in the bathroom, I heard a CRASH from the kitchen. I went in to see that Audrey had dragged a small plate on top of the dishwasher over to her high chair, then pushed it off her tray. It broke into big and little pieces, so I had to sweep up the porcelain plate and worry that the kids could step on shards. While I seemed in control with Nikko's poo situation, putting the broken plate on top of it made me lose my cool and I was mad about everything now. I finished bathing Nikko and dressed him up in the kitchen. Then I sat him down and threw Oreos at everyone so I could go back to the living room and pull up all the colored rubber mats on the floor. I couldn't take any chances with the mats, and they hadn't been washed in a long time anyway. I put them all in the tub and rinsed them off, later putting dishwashing soap on them too. The bathroom looked pretty trashed. Then I swiffered the floor and then mopped it. By now, Audrey was going ballistic because she had sat the longest of everyone. I let her go, finally. Nikko must have been tired from everything because he fell asleep for a 45 minute nap. I was really surprised by his bowel movement because it came out of nowhere. I've been putting half a cap of MiraLAX in his juice for two days on, a few off, to keep him regular. On a day where he's having a movement, difficult or not, there would be smears in his diaper and I'd be aware that he was working on something. This time, there were no warning smears, otherwise I'd have been watching him even more closely to prevent this very event. I don't think he particularly enjoyed the smearfest; it's not a sensory thing in my opinion, I just think he had a movement, hadn't' been changed right away, felt really uncomfortable, and so he started scratching. Downhill from there.

Just before I put Audrey down to bed, Denis and the boys were in the living room in front of the TV. The boys were fighting over the unsoiled Thomas chair, but Denis started doing turn-taking between them and the boys responded well. When Nikko sat down, we would say, "Nikko's turn!" then he'd bound up and be followed by Ronin for "Ronin's turn!" Nikko sat down again, waiting for someone to announce his turn. When neither Denis nor I said anything, Nikko turned to look at me and said, "Nikko's turn!" Then I'd repeat it and he bounded off. Denis had told me Nikko was saying Nikko's Turn, but I hadn't heard it until just then. That was a glimmer of spontaneous communication to me! :)


  1. It really is a rollercoaster!

    I really love reading about Nikko's progress, espcially about how the ABA sessions run, because we were never an ABA family. It's great to hear how things come together, how the doorways are opening bit by bit.

    I'm so glad you can find the time to write.


  2. Valerie, I try to write between 11:30p-12a, but this entry took me much longer than usual. Lots going on, and I try to capture even the dull stuff regarding Nikko because I want to remember how he used to act and/or how I (we) overcame things. I'm sure hoping the ABA is making a difference. Sometimes it's hard for me to tell because I'm a big fan of his preschool and his teachers. Stay tuned!