No words yet

It was an easygoing day for Nikko today. It's good to hear him jargon a little bit every day. One of his peak jargoning times is first thing in the morning when I come into his room. He can be lying awake on the bed chattering to himself. There are many quiet periods throughout the day but he seems to be vocal when he is experiencing something pleasant or is extremely happy. I have heard some remnants of a Wow or a Go, but nothing functional yet. One would think that the words will just come out, but I think I understand when the therapists say that his comprehension has to be there before the words will come. If he just started spouting out words, repeating them if heard or from a song, it would be great to know that he can vocalize but there would be no meaning behind the words. That's why it's so important to develop his cognition and other areas before the words will come. I'm impatient with it all, but need to focus so I can keep my eye on the prize.

We didn't get to go out until later in the day. We went to the mall to make a return and to the grocery. I just felt strongly that the boys should get out of the house once in a while so they don't go stir-crazy. They should also continue to see other people and things around them. The mall was really crowded today so I think it was cool to watch the hustle and the bustle. It was later in the evening so they didn't get to run around in the store or anything, so maybe next time they'll get that chance.

Bethanne & the stim

Today's play group could have been cancelled except for the fact that Nikko was the lone kid in attendance. I actually used this moment to talk to the DT, Bethanne, about many of the questions I had in my blog yesterday pertaining to Dr. Levy's two points of contention as well as having a daily "sensory" diet. She was very good-natured about things, but I think I was kinda grilling her for her opinion and hoped I wasn't coming off as a neurotic mom. I felt like this when I was explaining to her my thoughts about feeling embarrassed that Nikko wasn't progressing during yesterday's DT session. She said that maybe he was just having an off-day and didn't want to participate. My stance in my head was more stern, thinking that maybe I wasn't challenging him enough during the week so that he would be in better shape for his therapies. I asked her if I should be doing daily activites that cover all the bases i.e. speech, DT and OT.... but as I said all this to her and as the words came out of my mouth, I suddenly felt as if I sounded quite neurotic about these approaches. I sounded crazy, like I was overanalyzing things and trying to do too much. She acknowledged how I felt and said that it's obvious I love Nikko and want to do what's best for him, but I also have three kids and can only do what I can do right now. She told me not to drive myself crazy with all this stuff, and not to worry because there is so much stuff out there on autism, plus research still being done about what CAN be done about it. Bethanne said that I know Nikko best, and the best thing I can do is just try whatever I can to see if it works. She was referring to the sign language/language motivation debate, as well as Joining With the Stims... she had heard a theory about stimming along with Nikko, but never did it. However, right there in the room Nikko started crashing and stimming off the overhead lights while he ran full speed from one end of the room to the other. Bethanne started to run alongside of Nikko and emphatically say things like Stop, Go Go Go, or Run. She was joining Nikko in his stimming, and he was pleased that she ran beside him. He looked at her instead of the lights, and giggled when she was racing him. It was a perfect example of how joining the stims could help the relationship. I was impressed, and pleased that we didn't ditch that theory.

Later in the day we went to OT where Shelly got Nikko drawing on the mirror again. He didn't have the most successful session; he ran around her obstacles but was all over the place in terms of activites (like in the playgroup this morning). Unfortunately, he stepped into a sticky mousetrap pad that was on the floor and Shelly and I had to get that goop off him, ultimately using Goo Gone. YUCK. It's a good thing there wasn't already a dead mouse in the goop. YUCK YUCK. The rest of the day went smoothly, and Nikko went to bed rather tired because he only got a 15 minute nap in the car.

I have on my to-do list to read up on Nikko's transition into preschool. There's a lot going on in this area and I need to be on top of it. I should also have some questions for the school district person for our March 9th meeting. Lots to do.

Thoughts on a sensory/autistic diet

Developmental Therapy today was not good enough. Jen arrived and Nikko did not want to sit in the corner by the couch and work. In fact, I spent almost all of 45 minutes restraining Nikko, keeping him from leaving our corner, trying to sit him down or in my lap, or corralling him from hopping over the couch to escape. I had a real workout, let's just say. There were a few instances where he looked at Jen's stuff and complied: he started with putting a powdered hand print on black paper, he assembled two puzzles by HOH, he sorted a few colored shapes into containers, and the best attention-getter wasn't the bubbles this time but threading colored vehicle-shaped beads onto a black shoelace. He had to manipulate the bead so the lace would poke through, definitely fine motor skills at work. But after each activity he would glance around and become a slippery fish wanting to swim outta there. Audrey was nearby and because it was close to her naptime, she was able to snooze a little bit before Nikko made enough of a ruckus to wake her up again. I wasn't happy with the results of today because even Jen had to work harder than usual with Nikko. She remarked that he acts like he forgot how we do things, and I said that probably not seeing her for two weeks plus not having speech therapy yesterday made him not want to be pinned down to the corner. I was kind of embarrassed because it looked like he hadn't been challenged in quite a while, therefore he was rebelling. Maybe that's not really the case; I try to challenge him by asking for More every day. But this also leads me to wonder what I can be doing with him so that when therapy time rolls around he makes progress instead of steps backwards. I am not really referring to the Levy book again on this, but I think I'm venturing into that realm of doing a daily autism/sensory diet. I've thought about it before, but I'm not a therapist. I don't know exactly what I can be doing with him every day. Is it as simple as saying that I should work on at least one puzzle with him every day, or that we should do a matching/sorting activity every day, or something akin to that? If so, should it be one activity to stimulate gross motor, one for fine motor and one for speech, each and every day? And then, what activities under each header could I pick from? I know that the therapists will tell me it's as simple as letting him go outside to splash in puddles or dig holes in the ground with sticks, but that's only because I've seen him do this with the therapists. Otherwise, I wouldn't know that even the simplest activities could qualify as "daily therapy". I don't think like a therapist so I don't readily identify these things. Is this something I should just learn to do? And how am I supposed to do this?

Itsy bitsy spider

At the end of the day, I was holding Audrey in my arms as she entered la la land and Denis sat on the living room floor watching Ronin play with cars and Nikko zip back and forth from kitchen to sofa. Typical evening for us. I had spent a good portion of the afternoon at the chiropractor getting an adjustment as well as an hour of theraputic massage (felt great! May need it again, but don't be fooled... lots of pain involved as well). Nikko had a smooth day, and I am finding that as long as I announce in an animated way that diaper changes are taking place, he doesn't try to avoid them as much. It's a game for us because he'll come close to me and then run away as I try to grab him/tickle him for a diaper change. I think it diffuses any angst over being held down against his will.

Anyway, as I sat on the couch, Nikko came over to Denis and sat on his legs facing him. Then he took his right hand and ran it up his left arm, mimicking how Denis trails his fingers up his arm when singing Itsy Bitsy Spider. We looked at each other incredulously because Nikko's imitating was spot-on, plus he was directly communicating with Denis that he remembered the song and possibly wanted to sing it now. Of course, we praised him loudly (Audrey slept through it all) and sang it enthusiastically. All that repetition paid off, finally. Will he ever repeat this? We hope so. We were so proud of him!!!

In two weeks Nikko will have his "transition" evaluation. This will involve the therapists as well as a school representative from the district. I believe we'll discuss Nikko's progress and assess whether or not he'll be going to preschool, and/or if he'll be in a special needs program. I think he will have to go the special needs route at this point because he has no words at all and his comprehension is still pretty dusty. He is improving his communcation skills with me but simple concepts are still fuzzy. He definitely understands NO and expresses his disdain at my decision by stomping his feet and crying. At least he's not like Ronin, who will now throw things to protest his disapproval of all my decisions. *sigh*

A kiss?

This afternoon we all went to Pat and Anna's house to celebrate our February birthdays. Their house is light and airy, with plenty of space for kids to run around and a family room with Jovy's toys. I think Nikko had a good time looking around and playing with a Mickey Mouse push toy that had all these bells and whistles. He did prowl around looking at tabletops for food, as is his usual M.O. when he goes somewhere new. Luckily we placated him with an egg roll and cheese pizza to munch on. This didn't deter him from wanting the cake or cinammon rolls that appeared later, but we gave him small bites and cut him off when things started to get crazed for him. For some reason, he fell asleep on the way home as if he spent a lot of energy at that house.

When Nikko gets ready for bed, Denis gives him a bath and I join them in Nikko's room to help him get dressed. I think at the end of the day it's important for both of us to be there for Nikko. Right now it doesn't look like a sibling preference, I hope, because Audrey goes down first, Ronin second. I think Nikko needs just a little extra attention from his parents and this is the best time of day to do it, when we are all together. Nikko sits in Denis' lap while he reads nighttime stories or prayers. Then Nikko hops into bed, Denis kills the lamplight, and we kneel next to each other so Denis can lead the prayers.

Tonight, right after the prayers were done, I leaned toward Nikko to kiss him good night. Nikko was sitting straight up during prayers (sometimes he is face down) and when I leaned in, he looked square into my eyes and leaned toward me, too, as if he wanted to kiss me. I was surprised because he's never done that to me before, only Ronin has. I smiled and kissed him, and then gave him a big bear hug while trying not to cry. I was wondering if Nikko meant to lean in or if it was just a fluke? In any event, I gave him more hugs and kisses and told him I'd see him in the morning. Nikko is affectionate with me on his own terms, but I find that playing tickle games with him gets him to smile and laugh more, as well as illicits interaction with him. Sneaky? Maybe. But I'll do anything to get that eye contact from him.

Dr. Levy's 10 Things - this is a long post, FYI

Two weeks ago we went to the in-law's house for Friday dinner. Nikko came across a wooden backscratcher that also had 3 wooden balls for massage on it. Needless to say, he wouldn't part with it without a scene so it came home with us. It ended up in the Pilot for a few days unseen, but also made its way into our house. Tonight was Friday dinner again and I bid it farewell because we brought it back. Sure enough, right before we walked out the door going home, Nikko spied it from the corner of his eye, dropped his two trains and picked up the backscratcher. It's in our kitchen again....

Today was not a bad day for Nikko. He had breakfast and a visit from Cindy the social worker. She brought toys for him and Ronin battled it out over a toy animal hospital, then a battery-operated puzzle. The session wasn't really for Nikko, but for me to vent or tell her anything on my mind. I really appreciate her visits because she's very easy to talk to. Nothing earth-shattering came of our visit today, but the company was appreciated. Lunch was normal, and the afternoon kinda stretched out before us. Audrey was fussy between naps and I couldn't seem to get Nikko to sleep. He'd sleep in the car on the way to the in-law's anyway. At snack time I made him pb&j bread, but he took a few bites and didn't want it. I don't know if it's the peanut butter or the jelly he's not crazy about, but I'd take a bet that the jelly wasn't the most appealing. He did respond to the chocolate pudding I gave him in a bowl, however, and he used a spoon to take minute bites of it. He stretched out that bowl of pudding, I tell you.

I finished reading that book "What You Can Do Right Now To Help Your Child With Autism" by Jonathan Levy. I want Denis to read it so I can have a discussion about it with him. There are 10 things they outline that can be done immediately with Nikko:
1. Don't react
2. Make eye contact a priority
3. Join with the stims
4. Respond differently to crying
5. Five your child as much control as possible
6. Focus on your attitude
7. Work one-on-one in a non-distracting room
8. Be dynamic with your child
9. Get more language
10. Make sure food isn't part of the problem

These 10 things drew me to get/read this book because we do some of them already. I am not going to summarize the book, but I do want to comment on each point:
1. Don't react - I have a tendency to make a big deal of the bad things, probably in a way to discipline. I should tone it down, but I am not sure how not to draw attention to the "bad" things. However, I believe that I do offer praise when it is due, and I believe I praise big. I am always so happy to see Nikko do something big or small that is in a positive direction.

2. Make eye contact a priority - This was the first point that drew my attention to this book. Nikko's eye contact has improved quite a bit since his 18 month doctor visit. However, I know it can be improved. I will still employ the techniques the book describes, but I know that he could do better. Sometimes I still have to get into his face to get his eyes looking into mine.

3. Join with the stims - This is going to be one of the hardest points for me to follow, let alone fully accept. The book says to not try to stop Nikko from stimmying. Instead, join him. This is supposed to foster a relationship with him, build trust, and make him more open to WANT to learn from me. He will WANT to be around me, someone who theoretically believes and enjoys in what he is stimming over, which is supposed to be something that satisfys him. It's supposed to increase his interest in other people because he will soon learn to be interested in being with ME. This point is very different from what our current therapists have been applying in their therapies with Nikko, especially Shelly the OT. When Shelly sees that Nikko is stimming, (stimming, stimmying, don't know which is the proper way to say it) she is inclined to interrupt his stimming, or sabatoge it with an activity, or take away the stimming object. I can see that this has a big disadvantage in that Nikko becomes very upset when that happens; it takes some time for him to transition to a new activity, and if he's mad at us for taking away his stim object then he may refuse to participate in the future. This is something that the book is pointing out. Dr. Levy says it's better to join in the stim instead of take it away for those very same reasons, to get Nikko to want to be around me. It's truly an interesting concept that I haven't nursed before. Will it work?

4. Respond differently to crying - This point makes sense for both Nikko and Ronin. Here's his excerpt: When a child cries without having injured himself, there are only two possible reasons. Either your child is: 1.) Genuinely unhappy, and crying is an expression of that unhappiness. 2.) Faking it. That's it. In both instances, the book says to be peaceful in both situations. I just marvel how manipulative these kids can be, especially Ronin, who is the BIGGEST WHINER and is probably getting the things he wants by whining all the time in addition to crying. This point means I have to build up more backbone and not give in to the crying if I don't want Nikko to have something. That's it.

5. Give your child as much control as possible - The point here is to foster a more trusting relationship, and it's not through physical manipulation/force/restraint. Some points here to remember are to tell Nikko what I'm going to do before I do it (the book made some very nice illustrations about how autistic children are often dragged around, thrown around, and put into situations because they had to be moved, dressed and wiped without anyone warning them in advance). I believe this point is also about having respect for Nikko, and remembering that he is an individual with his own feelings that can be hurt, or his own space that needs to be respected. But move him if his safety is being compromised, of course.

6. Focus on your attitude - I had to reread this chapter because it was more about me than about Nikko. It's talking about understanding how you feel about yourself and the things you do, because it impacts how Nikko will feel. It says that because Nikko is nonverbal, he pays very close attention to ALL our nonverbal cues as well; he can tell if I'm truly happy or not. And who wants to work with/be around someone who is not happy or positive? This chapter says I should figure out why I'm unhappy if I'm unhappy, and that it will affect Nikko. So don't be unhappy.

7. Work one-on-one in a non-distracting room - I thought this point was obvious from the title. BUT, Dr. Levy goes on to describe school settings and basically says that non-autistic classrooms AND autistic classrooms will not benefit Nikko. He de-emphasized academics because by teaching Nikko academics instead of interaction skills, [I am] helping [him] to have skills that he won't be able to apply. He needs to master the skills of eye contact, attention span, and speech among others. That's a very fascinating concept that I'll need to go into later on, with more discussion....

8. Be dynamic with your child - I already do this, I won't elaborate.

9. Get more language - Nikko needs to be motivated to speak, and this may not happen if he learns sign language or a picture board first. That's what Dr. Levy says, and it's totally opposite of everything the therapists have been teaching us. He says to teach Nikko action words: Tickle, Up, Down, Eat, Drink, Bounce, Throw, Pull, Push, Roll, Squeeze, Sing, Swing. Then reward him quickly, to encourage the motivation. Another Dr. Levy teaching: there's no added impact right now to teach Nikko to say Please, Thank You, or I Want because right now they are not useful or powerful. We should focus on descriptors, clearity of speech, and increasing sentence length. This is, of course, after Nikko acquires some language. Getting him to look a little bit more normal [by teaching an autistic child to say Please and Thank You] is just wasting energy that could be spent on learning things that will be of use to him, like eye contact or more useful words. I'm still trying to wrap my mind around this one because we have spent so much time trying to enforce Nikko to sign More, when here Dr. Levy is saying to just connect Eat with the food. Do I stop the picture board (PECS) stuff and signing or keep going?? Gloria the Speech Therapist keeps saying she doesn't think Nikko is ready for PECS yet anyway, so maybe there's truth in this...

10. Make sure food isn't part of the problem - Fruits and vegetables. Nikko has a hard time eating these things, except for grapes and bananas, and spinach if it's mixed into stuff like pizza or cream of spinach, and sometimes cooked carrots in a soup. Oh yeah, and red kidney beans. I don't think Nikko has any food intolerances such as dairy or wheat. I don't deny him sugar, but he doesn't get it that often. He does eat crackers or cookies from time to time, but not every single day, so I don't think his diet is completely garbage. He does eat chicken nuggets, which I don't mind, but I know he should eat different things. This is another area where some creative presentation of foods is in order, as well as a stronger backbone. It would help if I actually liked cooking, I guess. An excuse?

The artist

Unfortunately, we missed Nikko's playgroup this morning because the babysitter got a flat tire driving over some potholes. This did not completely deter her from coming over, however, as she was able to take the Metra around lunchtime. This benefitted me so I could go see the chiropractor without kids in tow. This was the first time she was going to take care of all 3 kids. I know she's skittish about caring for Audrey while she's awake, but that can't always be helped. Audrey can't always be sleeping. She's also a little skittish about handling Nikko if/when he gets into a tantrum about something, like when he's at the park and he doesn't want to leave. I've had to just show her some tactics to use to remove him from the situation i.e. physically picking him up and carrying him away and/or coaxing him out of the park with promises of snack time at home. That worked for me the last time, and I came through accordingly. No empty threats there; that wouldn't foster trust.

I came back from the chiro and packed everyone into the Pilot and headed to OT at the clinic. Shelly made an obstable course for Nikko and encouraged him to peek-a-boo games. He was all fired up and crashing at the beginning of the session. By mid-session he was becoming mellow by crawling through some tunnels halfway. At the end of the session Shelly had him painting the mirror with shaving cream. As he sat and waved the paintbrush back and forth I heard him mimic Shelly's conversational tone. That's the first time I ever heard him do that. Nikko really enjoyed painting and making strokes on the mirror with the goopy shaving cream; Shelly called him a Picasso. Overall I'd say he had a good session with Shelly. It was hard to remove all the paintbrushes and foam from him, but I was able to show him his juice, which he promptly drank while seated in the stroller. We had to take the sitter home after therapy so the kids got some nap time in, at least 30 minutes. Later in the evening I had a visit from my good friend Tracy. Nikko didn't show much attention toward her, though he did look at her when she came and sat at the table. He didn't leave his seat either, content to watch us chatter, and perked up even more when she hauled out the french fries. Later in the basement he was eager to bound back and forth between foof chairs, but perhaps he was content because he had wolfed down the rest of the fries when he came back upstairs while I gave Tracy a tour of the basement.

I'm hoping to finish that book tonight or tomorrow because I really want to start applying some of the techniques I read about.

The Crying Game

Today our 1:15 Developmental Therapy session was cancelled so I opted to take the kiddies to mom's house for the afternoon. I fed them lunch first, and while I stood by the sink cutting Nikko's chicken nuggets he was doing some "crashing" by running from his chair at the table toward the door, full speed. He didn't look up and see me, and he crashed really hard into my leg. It didn't phase him much, but he rammed me so hard I fell off-balance into the door. I told him to watch it and be careful, but I was really surprised at how strong he is when he is running at full speed. Very dangerous.

Nikko seemed pretty behaved at my mom's house. He watched Hi-5 and snacked on cereal, and even got up once to come check on me while I fed Audrey in the living room. Unfortunately, before we left he got into some of mom's birthday clown cake and it spoiled his appetite. But not spoiled enough, because as I prepared dinner when we got home, he saw my bag of Milanos and threw a big fit when I put it away in the cupboard out of reach. He REALLY wanted a cookie, and ultimately I cracked one in half and gave it to him to keep him quiet. He practically nursed that half-cookie for the duration of dinner so that was the end of eating any nuggets. Earlier today a book arrived that I ordered on amazon.com: What You Can Do Right Now To Help Your Child With Autism, by Jonathan Levy. I saw this book in an email from the Autism Illinois newsletter and it seemed good because it emphasized 10 things you can do now. I saw that some of those things, like eye contact, are things we are currently working on. Anyway, I started reading this book tonight (and got interrupted because my episode of LOST is unwatchable on our DVR, so I'm waiting to watch it online. It's not streaming on ABC7Chicago.com yet, so I'm waiting until at least 2am. Doh!) and I am through the 6th chapter. There is some food for thought in there that has me thinking....

They talk about eye contact being very important. I agree. Nikko's eye contact has increased a lot since he was first observed back at 18 months. He never used to look at us. Now, he definitely looks at me when he wants something, needs to communicate something or is about to cause trouble with Ronin. He trusts me. Another point in the book so far is about the whole stim thing. Stim is short for self-stimulating behavior, which Nikko definitely expressed early in his toddlerhood. Nikko was a crasher early on, crashing into the sofa and into the TV and into the wall or to touch a piece of furniture. He also tended to run his Gordon and Henry trains back and forth, repeatedly and rapidly. Or a pencil, pen, marker or anything else horizontal. The book mentions that you should join him in his stims to help grow the relationship between you both. That concept is going to take some getting used to, because currently the therapists seems to promote getting him away from stimming. Shelly seems to react negatively when Nikko starts to stim, seeking to stop the behavior. Gloria kind of goes with it, but tries to distract him. Jen hasn't really encountered much of this behavior because she got Nikko further along in the program. But I do agree with the therapists that currently his stim behavior has gone down quite a bit. It's definitley better than before, although he still lines things up.

Lastly for now, the book talks about not giving in to the crying Nikko would do to get something. It draws the picture that if the kid isn't bleeding or hurt, then he is either crying because he's unhappy or because he is faking it. Manipulation is the key here, and I feel sheepish that I gave in to him by giving him a coveted Milano earlier. Boo!

I'm going to keep reading this book so I can see how immediately I can apply some of these concepts. To be continued.

Tuesday, continued

Instead of having our regular therapy session in the corner of the living room, Gloria was doing her evaluation of Nikko so we just sat and chatted while trying to periodically engage him in some play. She asked similar questions to DT Jen's questions, but for some reason things had an even more sobering effect coming from Gloria. I think because she fixed age appropriateness to her evaluation. For example, she quantified his developmental levels by saying he seems to have the gross motor skills of a 24 month old, the fine motor skills of an 18 month old, the cognitive and expressive development of a 12 month old, and the speech ability of a 6-9 month old. 6-9 months!!! That sounded so shocking to me, but when you put Nikko besides the developmental chart of Ronin, it's sadly clear that Nikko is indeed very delayed. Ronin is doing some imitative play, mimicking sounds, and "getting it" whereas Nikko is not. Like I said, sobering.

Later in the afternoon, the kids, Brianna and I went to Target and then to Costco for provisions. When we came home, I really wanted Nikko to get outside for a little bit despite the chill. I had Brianna stay home with Ronin and Audrey so that Nikko and I could go to the school to run things out. He was very excited to walk hand-in-hand with me the half block to the school. He tiptoed at first, which indicates excitement. When we arrived he bolted toward the jungle gym ramps and pretty much ran up and down then while the older kids swarmed around him. Surprisingly no one bumped into him or knocked him down. It was really chilly outside, and I should have brought a hat for myself, but we stuck it out for 30 minutes. After the school kids left, I wondered if Nikko would transition ok to leaving the park or would he throw a fit. I precluded our departure by telling him we'd leave soon, then it was last call for playground, and then we would go home and have some snack. I finally gave a small countdown and picked him up, chanting Home and Snack in his ear. That might have softened the blow because he allowed me to carry him down the block. I was able to put him on the ground and lead him by hand toward home, even though he took some backward glances at the place where he had fun. So, going home wasn't a struggle. This time.

The evening was typical, where Denis came home and we fed the kids dinner. After dinner we would, on occasion, go downstairs and let the boys run rampant around Denis while he worked out or played with them. This evening, however, we stayed upstairs and Nikko did a fair amount of crashing into the couch. Ronin minded his own business by the parking garage, but when Denis took the blanket out as a parachute that captured both the boys' attention.

A quick aside: When I tell Ronin, "Look Ronin, a CAR! Car. Car. Can you say Car?" He will look at me, then look at the car, and say "CAAA! CAAA!"
However, when I pose the same thing to Nikko, he does not repeat after me at all. He may not even look at the car, and if he did he won't vocally label it anything. This is a big difference between Nikko and Ronin. I don't know why Nikko is not identifying the name to the object. This is where the autism comes in, where his brain is not hardwired the same as other kids his age. The mental processing that should connect the word to the object is either short-circuited or the wires are crossed in such a way that the processing is incredibly slow. SO, how to fix this? This is where the therapy and constant care from his parents come in. I don't have all the answers, but I am trying very hard to find that simple string that will tie the concepts together.

Quiet Day on Monday

I hate to write that nothing special happened during a day, but on Monday it was rather quiet. Our only outing was to Target and Jewel, and Nikko fell asleep in the shopping cart in mid-shop. He's been doing well with me in that he's looking me in the eye and seeking my company. We get a lot out of tickle games. But engaging him in other games like puzzles and shape sorting seems to work better when the therapists do it. He doesn't mind playing trains with me, however, and I am still thinking about getting a tunnel to make the play more diversified on the floor. I suppose I can make one out of cardboard or something.

Today, Tuesday, we are waiting for Gloria to arrive. I am wondering how Speech will go today. Last week's session was very good, which is why I am dreading today again.

Mother Warriors

Whatever Nikko had going on in his system about refusing to sign More is finally subsiding, as he is now starting to sign it again when he wants something. It's kind of sloppy, but hey, I'll take it over nothing. He's not putting a Please behind it, but again, I'll take More for now. Nikko didn't do anything that was unusual during the day today, but when we dropped off the kids at Luisa's house before we went out to dinner he was very upset, and when we returned he was so into a rickety pink toy stroller that he barely gave us a glance. That's probably very typical of Nikko or any 2 year old.

After dinner, Denis and I went to hang out at Borders for a little bit. I walked down the aisles and really had no idea what kind of book to read. I love reading a good book, which is arbitrary, but I rarely am able to pick out a good book. Luisa usually recommends good ones to me, like Memoirs of a Geisha or The Time Traveler's Wife and I read them and end up loving them. But I am bad at picking out books. Anyway, while perusing the aisles I saw another Jenny McCarthy book with her son Evan sharing the cover. I had read her previous books, including Louder Than Words, so I was curious as to what this book, called Mother Warriors, might be about.

Jenny is an advocate for Mothers with kids that have autism and is against vaccines. I read a few chapters (that's all I had time for) and it just started me thinking about methodologies toward Nikko. According to Jenny, vaccines caused autism in Evan, and by altering his diet and including supplements they were able to overcome the autism. I am sympathetic toward Jenny in her vehement struggle to get help for Evan in his therapies, for her suffering through his seizures, and for dealing with the stigma of autistic children. However, I'm not sure I am on the bandwagon when it comes to vaccines. I don't think vaccines caused Nikko to have autism because even in his infancy he has shown detatchment, indifference to trying to teach him things such as animal sounds or body parts and started his crashing earlier than at the 18 month shots. Therefore I can't really rally around Jenny's battle against pediatricians and vaccines. The second food for thought is the whole diet thing, being wheat/gluten free and including tons of supplements. On the diet side, people say that if you try it, you will see a different-acting Nikko. Nikko doesn't have any gut or digestive problems, doesn't have any food allergies, but does have eczema that is not terrible. I think people like Jen the DT are helping Nikko learn things through therapy, but I'm not sold that changing his diet is going to improve his behavior, or even get him to talk. I am not saying that it doesn't work, because it obviously works in many cases i.e. Nick, Todd's nephew has an entire revamped diet that they tell me has helped change his behavior. I also can't discredit it because I haven't tried it. Shelly the OT told me that it's possible to do, but it is a lot of hard work. We could still see some results. Geez, I can hardly get the PECS pictures going, and I hate cooking, so how am I going to revamp Nikko's diet? Then here is another underlying question: am I doing Nikko a disservice by not trying to alter his diet? Am I being a bad mother by not doing everything I possibly can to help him improve or overcome (if that's even possible) his autism? Is my hesitating to change his diet making things worse? Am I being lazy?

I don't know if I'm going to continue to get Jenny McCarthy's book and finish reading it, or borrow it from the library if I can ever get back there, or buy it on amazon.com if it's not too expensive. I'm curious to read what's going on with her and Evan, but realize that her story doesn't exactly apply to me.

@ Counterstrike

This morning Denis watched the kiddies while I went for a haircut and a morning at the mall. Ahhhh.... but it was strange to be all by myself with absolutely no kid in tow. When I came back, we took all the kiddies with us to our friend Rey Tacadena's new martial arts school called Counterstrike MMA in Downers Grove. It was an open house that was also kid-friendly, which was the deciding factor on whether or not to go. It had a big, open space with mats on the floor and a big boxing ring. Nikko loved running across the mats and didn't collide with anyone, fortunately. He looked like he was running sideways, shaking his head back and forth, but luckily he wasn't stimming with sidelong glances. Nikko even took his socks off and was running barefoot at full speed. It was cute to watch. What wasn't cute and almost a disaster was Nikko trying to climb into the boxing ring while a Filipinio stick fighting demonstration was taking place. Rey graciously picked Nikko off the ropes and Denis came to corral him. Nikko really wanted to run around with the nunchucks but since they were training equipment I had to distract him with a rice krispie treat or juice. Ronin, meanwhile, drank 3 sippy cups of juice and wanted to run around with half-filled bottles of water. He also had a blast running around, and I feared that he'd collide with someone and go flying, but that didn't happen.

Running unbridled was really good for Nikko, and I'm glad we went. He blended right in with the other boys that were running around, except he didn't talk and didn't jump rope like the others. His actions were still age appropriate, I think. Nikko didn't want to leave, of course, and it was a struggle to get socks, shoes and coat on him, but once he was in the stroller I felt a sucker in my coat pocket and gave it to him. MAGIC. The struggle stopped and he gnawed on it peacefully all the way home. I got the sucker from the pediatrician's office and remembered that it has proven to be a useful device in times of meltdowns.

Later this evening, I was beginning to meet resistance again with signing More, when Nikko and Denis sat in the living room eating pizza. Denis kindly informed me that Nikko was signing More unprompted, for pizza. I had to go see this for myself and was indeed rewarded with Nikko signing More to Denis. OK, can't help but feel betrayed by Nikko, but was happy to see that he is truly capable of this action (remember the bunny). It must be those terrible two's and a power struggle against me. I'll try not to hold it against Nikko, but geez, what a bum deal that I gotta work doubly hard for his More. Grrrr..

No More, Day 2

I am so mad at Nikko right now that I don't even want to look at him. This is day 2 where he refuses to sign More and I am just taking it so personally. I feel as if he is outright refusing me and I am pissed to high heaven. I tried at each meal to get him to sign More. I tried to give him some foods that he'd love to eat, a cheese-filled pretzel, chocolate pudding and a favorite train DVD but he is refusing to sign More. I didn't even get any Pleases for the train DVD to get repeated. I'm incredibly hurt right now, seething and suffering from a headache I'm sure my screaming spurned on. I am losing it, practically blowing a gasket here. The scene is ugly after awhile, it is so hard for me to hold my composure when I KNOW he understands that he has to sign More to get more. My thought is: WHY aren't you signing More? WHY are you doing this to me?? That's when I knew I was taking this way too personally. How can I not? I am the one asking him directly for a sign and he's not giving it to me.



Right now he finished his first round of nuggets and has crawled behind me on my chair. I will face him in a second, ask him if he wants more, will sign More, and see what kind of response I will get....



I just did some hand over hand with him so he could get a few more. But the next time I wll not give him anything unless he gives me a more definitive sign.



I am so frustrated with him that I can't wait to get away from him right now. I'm calm now, and I'm talking to him if I have to, but I feel incredibly cold toward him. We had such a battle in the living room about the train DVD. I told him if he wants more trains, sign More. He refused. I don't know why. Back and forth, lots of tears and crying from him. By the time we got to the kitchen (no TV anymore, BTW) I was slamming and banging things. Denis will be coming back with Tortorice's pizza for dinner, and I dread seeing Nikko trying to get some from us. I am not going to give him anything unless he signs More after an initial feeding. I mean it. I don't want to give in. I will do hand over hand once or twice, but after that he MUST sign for me for he won't get anything. I have to be firm on that. It's killing me, though. I want to get away from here so bad because I'm afraid of screaming in front of the boys again. Poor Ronin is suffering the backlash from Nikko's refusals because he's getting in the way and I'm practically knocking him over. To get back to normal, I tried to think like Jen the DT. She would probably tell me to offer him nuggets once, twice, then do hand over hand (HOH) and give it to him. That way he'll get it right away instead of everyone suffering. I'm going to try doing that, but also realized that this evening I was probably way too tough. Like tough love, I suppose. But I didn't give in. I wanted him to watch his train DVD, but told him all done, no more and kind of punished him for not doing More. Perhaps that's not the best way? I'm not sure. It didn't help get my message across, that if he DID do More then he'd get what he wanted. I gotta ask Jen to see what's the right way to go about doing this. I still think she'd tell me to keep on repeating it, via HOH.

(Sigh) I just want to start fresh with Nikko tomorrow and not get in too many confrontations. I wish he would just sign More and be done with it.

MORE, please!!

I'd have to start by saying the theme for today was a lack of MORE.
Nikko, Audrey and I went to playgroup today. The triplets were there as well as Aidan so the room was buzzing with activity. Nikko immediately played with two school busses and got attached to them, of course. When it was time to join the others in Circle Time, he refused and retreated to the opposite end of the room. He also avoided coming to the table to work on a Valentine craft (so I'm out again this week of another craft from him). He started to look toward the corner where the Cheetos were for snack and tried to get to the corner. It took a lot of work to steer his attention toward play-doh, which he did engage briefly. Another transition to the bean table was rough, so it's probably safe to note that Nikko's transitions between activities is very difficult. Swapping objects can also be difficult unless the newer object is absolutely way cooler that what he's currently holding. When snack time finally arrived, Nikko was eating away BUT was only signing "please". I'd remind him to sign "more" and do hand-over-hand to help him along, but for some reason he refused to sign More. Because of this, he received way less Cheetos than last week, and he was enraged that he didn't get more when snack time was finished. This behavior seemed to follow us home, because he refused to sign More even for french fries. Brianna tried to get him to sign as well, and she finally DID get one More out of him, which I saw out of the corner of my eye. It was emphatic, too, so it's not like he forgot how to sign More.
REMEMBER THE BUNNY!
I seriously was beginning to think that perhaps he lost this skill along the way, or was confused about wanting More, but it doesn't make sense to me how he never used to sign Please, and now that's the only sign we'll get from him (for the past two days). I KNOW he understands that asking for more means using the sign More. He outwardly refused to sign More, but is asking for things by signing Please. I don't get it!! I just have to REMEMBER THE BUNNY and know that if he really, really wants something, he will sign for it. I do get torn sometimes because, like Jen taught me, I'll revert to hand-over-hand to get things moving and I don't know if that's copping out. Perhaps it's not. I probably need to do it a gazillion and one times before he will stop being stubborn.

I went to the Chiropractor later, left the boys at home with Brianna. Nikko was napping when I came back. I hauled everone into the Pilot and headed to Costco for a quick errand run. When we came back, OT was cancelled (Shelly has the stomach flu) so I told Brianna to take Nikko to the school if he wanted to go, to run around. I think they headed that way, but she came back carrying him kicking and screaming soonafter. I think she didn't want to stay there long because he would resist her like that later, too. He was so mad that he couldn't go to the school and refused to run around in the backyard. We really do have to consider getting a swingset of some sort for the backyard, so the kids don't have to run to the school (and be denied when the students are out and about). The rest of the night was typical, TV and trains, dinner, bath and bed. Nikko always looks at me before he takes a train or toy right out of Ronin's hands. Even if I say a firm NO and point a stern finger, he proceeds to take the toy and Ronin screams. I end up prying the toy away from Nikko and handing it back to Ronin, explaining that Ronin is playing with it. I don't think fairness registers with Nikko right now. Nikko is still very clingy to me and seems to want my exclusive attention lately. Again, I try to give him as many tight hugs as I can. I hope that tomorrow he will drop this refusal to sign More and resume proper behavior. I have NO idea if that will happen!

Moody Blues

Nikko was very clingy today toward me. I saw him eyeing Audrey while I held her in my lap and he'd come over head-first, trying to nudge her out of my arms. Nikko's pretty strong, so holding him back while trying not to let Audrey get crushed was very challenging. Somewhat fortunately today Jen was doing her evaluations on Nikko so we weren't going to have an active session. Instead, she was asking a bunch of questions regarding Nikko's developmental progress. Meanwhile, Nikko conked out in my lap on the kitchen floor, so I guess a much-needed nap was imminent for him. Ronin was toddling all over us while the evaluation took place and he was happy as a clam (oyster?) that he had an audience in which to wreak havoc. When Nikko woke up he was not happy, even though he was in my lap, and when I put Audrey in the exersaucer to keep her out of harm's way I watched Nikko look at her in a calculating way. I did get a little nervous when he stood in front of her, but he didn't do anything. That was the first time I ever felt an alarm in my head regarding her safety with Nikko.



The rest of the afternoon was uneventful. I took the kids downstairs to run around, but Nikko didn't stay long. He went back upstairs and preferred to watch the train DVD. It's dinnertime right now, and he's incredibly giggly.



When I reviewed Nikko's progress with Jen, it was kind of sobering. There are many things that Nikko is not doing for himself, is not doing independently. He allows us to dress himself up, but he doesn't do it himself. He will crawl downstairs and upstairs, but he won't walk upright on his own. He eats primarily with his hands, even though he can use utensils, and doesn't try to feed himself with a fork or spoon. He's not exerting independence in much, except when trying to escape a diaper change. He still doesn't know how to jump with two feet off the ground, and I don't know how to teach him that except by imitation. I'll have to ask Shelly. This all sounds negative, and I know Shelly would emphasize to me that he's done a great many positive things, but realizing all the things he can't do is sobering. Speech, above all.

And then he does something that shows he is learning after all. I stood at the fridge refilling Ronin's juice and I said to Nikko at my feet, "Nikko, do you want more juice? Go get your sippy cup. Go get your cup and bring it to mommy." It took a few more chants, but he purposefully walked to his chair, got his yellow juice cup, and brought it to me. I was so happy to see that and gave him lots of praise. Nikko is beginning to understand that "More, please" means that he will receive more of something if he does those silly hand motions. And that's great progress.

The Perfect Weather Day

Nikko had a very good session today during Speech Therapy. He didn't talk, mind you, but according to Gloria, he attended for nearly 45 minutes playing with blocks and farm animals and little wagons and airplanes appropriately. I saw it for myself as well. He verbalized a little bit during the session as well. Prior to Gloria's arrival I was absolutely dreading ST. I feared that he would not be cooperative and we'd spend the entire session restraining him as usual. Thankfully he surprised us all by sitting in the corner ready to play, and then actually playing.

The weather today was awesome, in the 60's for mid-February is pretty rare. I knew earlier in the day that I had to make sure the boys got to play outside somehow. Brianna would be here so she could certainly assist me. The only caveat was that I had a follow-up doctor's appointment scheduled at 3:30pm (I kept my earlier chiropractic appointment). I figured that by the time I got back home, it would be getting much later in the day and possibly colder. Therefore, I cancelled my doctor appointment and figured that I'd rather trade in the time spent over there for the time my boys could enjoy the weather outside instead of being cooped up indoors. I am so glad I made this decision. Brianna, Nikko, Ronin, Audrey and I headed to the Fairview playground. Unfortunately, so did all the after-school program kids. It was crowded, and I feared that Nikko would get knocked down by the bigger kids. I feared that Ronin would get trampled over because he's so small. I had Brianna watch Nikko run around on the playground equipment, but I took Ronin and Audrey for a walk around the block instead. We did manage to spend a little time in the backyard, however, so all was not lost. Ronin doesn't like the outdoors nearly as much as Nikko does, at least for now. But the more Ronin sees cars and trucks outside, the more he'll want to be outside. Nikko must have had a good time because later on he fell asleep on the couch 5:30-6:30pm. He's still a bit restless, as I heard him laughing in his room just now when he should already be sleeping. Possibly still wound up. He has DT tomorrow, and I am hoping that Ronin will behave with Chinny while Audrey takes a long nap. This is wishful thinking because her sleep schedule was thrown off this weekend.

Nikko is getting the hang of "More, please" when he really wants something. I still have to prompt it out of him, but other times he is sharp and willing to sign so that he gets what he wants. I think he's definitely being challenged by everyone lately. He is approaching me more for some reassurance, I think. He kinda hangs on me and looks up at me, or just wants me to stand next to him at the dinner table. Just stand there and do nothing. I have been giving him some reassuring hugs, so I hope that helps. What I haven't done is move forward on the PECS signs or the Meal signs. I really should, so that he doesn't have a relapse.

TV

This morning Nikko woke up in a good mood. In fact, Nikko and Ronin were both dressed and playing in the living room by 8am, even before the idea of breakfast. I don't know if Nikko was overly tired from the night before, but I noticed that this morning he was leaning on me while watching TV, almost seeking my company over playing with his trains. I took it as a sign that he needed more attention from me, after taking vigilant care of Ronin during his breathing episodes and now Audrey has a stuffy nose as well. If I went to my mom's house, someone else could hold Audrey while I hung out with Nikko.

That was the plan. But in traditional fashion, Nikko ended up in front of the TV and watched Hi-5 for the duration of the DVD. That DVD is 3 hours! Shame on me for letting him soak it all in, instead of encourage him to play in the living room. The sunroom wasn't in a conducive state of play, what with all the orchids around and no room to run. The basement is also not kid-friendly yet because the flooding has left a lot of things to stay in the open. Finally, the weather wasn't the greatest for Nikko to go out and play, unlike yesterday it was tolerable and Nikko found great joy in splashing in some puddles on the sidewalk. His pants, socks and shoes were happily drenched.

Nikko can sit in front of the TV for hours if something is in there that he likes, i.e. Hi-5 or either of the Real Trains for Kids DVDs. I have been able to coax a "More, please" out of him to get the train DVD repeated. Tomorrow is speech, and I REALLY hope Gloria can engage Nikko in a productive session. I am very concerned that there is no improvement in ST over the last few weeks. We've got to change something here if things proceed to stall out.

Puddles

On Saturday we went to my mom's house since the Penepacker girls would be there. Nikko finally got to go outside and run around freely. He's very good about staying in the front yard, on the front sidewalk, and as long as he's with me he doesn't run down the driveway into the street. It's been a while since he's taken off down the block toward the parks, and once the weather gets better and we go there, he's bound to remember them. He's also a sucker for sprinklers, and I fear that I'll be working on keeping him out of them all summer... or bring two extra changes of clothes for him when he'll inevitably get drenched.

Coping & Music

Cyndi the social services coordinator came today to chitchat, as is her job in the system, to provide the parents of autistic kids with support. I seem to learn something every time we meet. I told her about the meltdowns I've had when the kids are on my last nerve. I try to keep it together and not blow up in front of them, but things will happen. She said I don't have to try not to get mad, but I should come up with some strategies to cope with the meltdown I'm gonna have i.e. scream into a burp cloth or leave the room and close a door to scream alone, or better yet, find the humor and do something silly to make myself laugh so I can cope with the problem. I have lost it in front of the kiddies, and like the idea of screaming into a burp cloth to regain my composure. The point is to find something to help me cope.



As for music, I will start playing classical music or something else when the house is silent. The kids can play, but they don't have to do it in silence. They can learn something, and be culturalized in the process. That's really what I want for them. It's not a new concept, but for some reason it seems even more appropriate now than ever. Maybe music will help bring out his voice. La!

Nikko was not terribly active today. I got him to sign "More, Please" for pancakes, cashews and especially to watch more of the new train DVD. I'm trying to speed up the process as Jen described, asking him what he wants 2 times or so, then going hand-over-hand and moving forward, but I don't want to overdo it by rushing him as well. I understand that I have to get him while the concept is still fresh and before he loses interest, but sometimes I do get him to sign "more" and I have to work harder for the "please". But what a good feeling it is when he does those two things. It makes me beam!

Thursday rush

Today was expected to be a busy day of shuffling Nikko around. Playgroup in the a.m. was better than last week but still had its issues. Nikko played with some brick blocks and didn't want to part with them when circle time started. He gravitated toward the toy kitchen and played appropriately with some utensils, which made it harder to pry him away to work on a craft. He did great during snack time, and when prompted he signed "More, please" with his orange-covered fingers. After playgroup, we went home, I dropped off Nikko and took Audrey to the chiro with me. Came back, and then we all loaded up to go see Shelly back at Clearbrook. He did OK during OT, not great. He could have been excessively tired, because his only nap was 10 minutes in the car. The rest of the evening was uncomplicated for Nikko.

I went searching for something to laminate cards. I am formulating a plan in my mind to laminate cards that read: BREAKFAST, LUNCH, SNACK, DINNER and then use them via PECS with velcro on the back. Gotta make the board first. I am planning on getting Nikko a routine for eating so that the grazing will stop. It's probably better for him that way, but I have to get the nerve to move forward on this. I can't let much more time pass, so at least by Sunday night/Monday I want to have started this new way of approaching meals.

Remember the bunny

Jen the DT showed up after 1pm and Chinny took Ronin downstairs. I only had Audrey, and unfortunately she melted down halfway thru therapy. Nikko started out being compliant, but soon became Noodleman and had a few escape issues. He seemed highly distracted by the echoing of Ronin's cries downstairs, although Audrey's screams didn't rile him up any more than he was. Jen switched puzzles and pictures with him, but his engagement level was pretty low. It seemed to me that he didn't even have the ability to sign "more" anymore. Just as that thought was settling in my mind, Jen put out a little fuzzy bunny that buzzes around the floor when you pull its tail. Nikko seemed slightly interested in it; then Jen took it away. Nikko wanted it and reached out for it but she pulled back and asked if he wanted more. In a flash he signed "More, please". I was flabbergasted!! This was proof that Nikko is basically being L A Z Y, that he fully has the capability to sign "more" if he really wants something. His motivation to have something must be really great for him to want more.

Jen suggested that when he has Cheerios, we should make him do a little work for them such as putting them in a little bottle so he has to shake them out, or in some kind of container that he has to unscrew.

As for his issues with compliance, she again told me to offer something to him one or two times, then do hand-over-hand to get the task done and move on. Jen seems to be about moving forward, which is great. She says to say the words immediately and work in the moment with Nikko so that he makes the connection to a particular task. We are still working on making the connection with him in regards to recognizing which picture is a cat, bug, dog, doll and so on. He can match pictures and shapes no problem, but putting a picture of a cat on top of a picture of another type of cat was confusing for him.

Jen says that when we get into situations where he is not complying or is being just awful, "remember the bunny" incident and know that he can comprehend things, that he has come a long way and is still coming forward. He's learning, but we have to remember what level he is still learning at. He is making improvements that we go ga-ga over, but his progress is still slow albeit good.

I told her about my power struggles with Nikko to sit at the table for meals. She told me what I had expected to hear, but probably have been cringing that I have to enforce it: CONSISTENCY. I am going to have to establish that mealtimes are when we eat, including snack time, and when we don't have those mealtimes going on, we don't eat. Nikko has become a grazer and that's gonna be a problem in preschool because they are all about routines. I've got to get Nikko on a strict routine so that he learns what is expected of him. SO, I gotta move my butt and make up some kind of Meal Board so that he knows when we eat and when we don't. I have something in mind, but need to execute it: signs saying BREAKFAST, LUNCH, SNACK, DINNER laminated and then put on a corkboard for ease of use (velcro would work, too, like the PECS system). I gotta get on this!

Day One - sort of

I forgot to start this blog by mentioning that Nikko was diagnosed with Autism Spectrum Disorder on October 6, 2008. Back in February/March, as a result of his 18 month visit at the pediatrician, he was recommended to Early Intervention @ Clearbrook, an organization that works with disadvantaged children and developmental delays. He's been receiving Occupational, Speech and Developmental Therapies ever since.

This isn't quite Day One of Nikko's therapies, but it's Day One of my attempts to blog our progress. While I stood doing the dishes, I thought about Nikko's therapy sessions and how critical a time it is for him to be improving. Not all the therapists write notes that allow me to have a copy, especially Jen the Developmental Therapist, which is alarming because she is the best of the three. I should be keeping a notebook on everything that's happening to him, so why not blog it? That's the revelation I had after doing all the silverware. It's late, unfortunately, so I won't recap everything yet. I'll just put some thoughts down...

I'm worried that Nikko's progress isn't happening quickly enough. We should be going through the process of evaluations for preschool very soon, and I think he will not be at a point where he can mainstream at all. I think he's destined for a special preschool because his skills are so delayed. Especially his speech. I've got to keep track of the stuff Jen tells me, because whatever she's doing with him seems to be working even more so now. Last week we talked about him making choices, which is frustrating him big time. He's been regressing and not wanting to participate in therapy sessions, but Jen can pull some kind of activity out of him even though he struggles against me like a greased pig.

Nikko didn't do great in Speech Therapy today. He was better than last week, but still difficult. He was resisting being in the corner and I got a good workout again. He may have paused 3 times to work on a puzzle briefly, but nothing was productive in my mind. I'm hoping that DT tomorrow will yield good results. I also hope that Audrey and Ronin won't be underfoot so I can concentrate on Nikko.