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    January 2020
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    Avery, Naim, Aaron

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VH: Winter Week 1, Thursday

Avery in Little Villagers, made cheerio bird feeders.

Avery went back to Little Villagers with Nik today. I worked at D’s the last couple of days. But to back up just a wee bit. Avery had his EI IFSP six month review. It was slightly tense between Jean and I. Not so much about going over his progress, but about the fact that EI is not providing enough services so I want her to write something that will get him into speech so OHP will pay for it. In the end, we blamed it on the federal government, which is true, but she really is quite useless.

Also had Head Start with Danielle. We are going to put him in the two day a week program next week for a trial run. It is more a travel/scheduling issue than anything else. I think he does better out of our house. He is too busy wandering around and doing his own thing at home. Danielle is fine, but sometimes the visits are painful and not productive. I could be doing something else with him. So next Tues will go to his regular socialization, and Thurs. will be trial run at the EHS program in Hillsboro. It is much closer, so no bus for an hour. But no bus period. We will have to get there ourselves. The trial is to see how bad that is. It is walking about a K to get to the max, then about a 10 minute max ride, then another K of walking on a street with no sidewalks. If this goes well, we will take him out of Little Villagers.

Head Start Notes

Aaron and Naim had Discoverers which seemed to go ok. Naim complains that it is always play-doh and paint, but when he is there he seems to like it and be ok. Aaron went to measure for treasure where it looked like they did clock stuff. He made a nice clock. Naim did a game in drama class that we all had to do at home. It was something like pretending you were stuck inside a ball, then stretching out the ball, then rolling in it, then bumping into other balls. The one who thought it was the funnest was Avery. He laughed and laughed. Oh, also, Naim is “in love” with a boy in drama class with curly blonde hair just like him. Oh, thank goodness. Maybe we won’t have to hear about him not finding any friends there.

Twas about it, I think.

Last Day of VH for Fall

Aaron and Naim had Discoverers and as usual I get no info on that. Naim had drama and they did not do a play this term, which I think is good, because two plays two days in a row would have been a lot and he likes that they mostly do drama games in there anyway. Aaron made fruit salad for measure for treasure. He brought bananas.

And it was the BEST FRUIT SALAD EVAH! he said, but then had another major drama where he could not find the thing he made on Tuesday in Math Playground (it is in the same room as MFT). So he had a crying fit and hid under the table. I got all this through Nik. But this is exactly the problem we had last year when I took him out of almost everything except Discoverers. We were doing so good this year so far! Perhaps the break will be good for him, but I’ve kind of had it. Going to Village Home is a huge time commitment, costs money, and is a lot of work. It is a privilege and I’m not going to put up with this. He can stay home all day if he is going to continue to pull this and he will have to just do more homeschool at home. (Either that, or there is always the threat of public school, which I’ve really tried not to give the tone that that is a punishment or something awful in case we ever have to go that route, but there are enough kids at VH who have spent some time in PS and tell him how awful it is that if we say anything about it, he acts like we are sentencing him to prison.)

Avery did OK at Little Villagers again. Seemed to just put up with snack, didn’t do art, and went to the library with Nik instead of going outside to the park with the others. So maybe he needs a break, too. He has one more “off-site” Head Start after Thanksgiving and then he will have a month long break from all off-site school. Though his teacher will still come. (And I think there is a Head Start Xmas Party as well.)

Avery Movie (let see how this works!)


VH, Birthday Parties that almost weren’t, Stranger Danger


Avery went to Little Villagers and except for refusing to do the art project, did well. He is getting more comfortable with the routine (when to clean up, etc.) and he likes it.

Discoverers seemed fine, too. All they ever tell me about that is that they played.

Measure for Treasure had cooking science and more gak that Aaron brought home.

Naim continues to enjoy drama. They did this day by themselves, said Nik. He did not see either one till the end of the day there.

Here is the note from Measure for Treasure.

We will spend the next two weeks of class doing some classroom “cooking” in class.  We will make more gak, some play doh, bubbles, and other fun recipes.
Next week, please bring two “servings” of your child’s favorite fruit.  We will put all of the fruit in a bowl to make a Friendship Fruit Salad.  Please bring the measurements for your contribution to the fruit salad (ie. 1 cup of diced apples, 5 Tablespoons of kiwi – the measurements are up to your child – encourage creativity!).

Enrollment for winter term is next Monday. We are already pre-enrolled in everything , but I should double check Naim for Bookworms.

On Tuesday, they are having an entrepreneur fair. This is the kids, not the adults that will have booths and sell things. I’m going to take the kids because they always want to make money but they never like my suggestions for doing different housework projects around here or for D. So I thought this might give them (and me) some ideas.

I spent the ENTIRE DAY at D’s doing attendant work. Well, I actually came back home for an hour or two here and there but went back two more times. It was his birthday and so I made sure I got there early (9:00 am being the definition of early for him) so we could do something with him. Aaron wanted him to spend the day over here. I thought that might be possible as they would not be home until 2. But I could not get him going. I offered to take him out, or come there or have him come here. By almost 7:00 pm, we were finally done with breakfast, getting ready for his BP, which took 3 hours, then rests in-between all this stuff, then getting him up and dressed. He finally got up at just before 7. Kids were hungry and anxious to eat and give their pictures and things to D. So I suggested they come to his house and he wanted to order pizza, so that is what we did. We only stayed about 1 1/2 hours, and he was spaced out or stoned or I don’t know what. He got a bit better after eating pizza, but I was so tired, and I don’t know what is going on there. Is it physiological? Is it long-term narcotics use that is damaging his brain? Is he depressed? I’m not sure, and not sure what to do about it. Nik and I are spending our lives over there, and he never leaves his house EVER. He backs out of seeing the kids frequently and they are starting to notice. There is so much “keeping him alive” that his quality of life seems to be quite low right now. It is hard to know how much of this is out of his control and how much of this is him just checking out.

I told him about going to Stubb Stewart and that the bus we rode had a lift. I said we could go out for a day trip and stay on the paved trails. He is having battery issues with his chair so I suggested that he could go manual and I would push him. But then he goes off on going camping out there together. I’m not against that, but that is a whole other ballgame. And I’m like, I can’t even get you out of the house and down the street to the corner park. Lets take some baby steps here. But then I realized, this is all just fantasy for him. Going for the day, camping, just as far out of his reality, so he just goes off on something that doesn’t make sense. It is weird to have conversations with him now. I will have to think more on this. Should I talk to his dad? Should I call his nurse? Craig Hospital? A counselor of some type? I’ve already tried to talk to him and get nowhere. Part of my job is to monitor his “with-it-ness” and ability to manage himself. I don’t think we have fallen off a cliff yet but we are moving closer to the edge.

It makes me incredibly sad. Its like watching someone slowly fade away and not knowing if there is anything you can do about it. I guess I talk about it here because it does affect the kids most of all and it is something that I am going to have to deal with as a parent. Mostly, I try to be honest with them about what is going on. But it is hard when I don’t completely understand it myself. We have been using iMessage on the iProducts now, and when(if) I get a new iPad 3 next year, we will all be able to do video stuff, so maybe that can help us find new ways to stay more connected.

But, I think there is a few picts on Nik’s camera:

Not the best pics, but we were really crowded in and Nik got a few.

Three candles on a cupcake, for 37? It worked.

One of the few times the six of us (8 if you include Kai and Sully) were together, awake, and in one place. It was gonna happen, even if we didn't get him up till 7:00pm

One more thing, when we left from D’s, it was dark and I sent Naim with some trash to the dumpster, which is only a few meters from his apartment. He didn’t come back for forever, and so I went to look for him. I found him in the hallway of the apartment building next to D’s. They all do look alike. He got lost, he knew he wasn’t in the right place so he decided to stay where he was at. Which is what we have told them to do if they ever get lost.

This led into a discussion about Stranger Danger. Grampa Fred told them not to talk to strangers, which is just not practical when you are a kid riding transit with disabled parents and a guide dog. They/we are a source of curiosity for the public and they have to learn how to manage that. Being the center of attention all the time and also sometimes having to ask strangers for information, it is just not realistic for us to not talk to strangers, and we are always out in the public eye.

Besides, experts like Gavin deBecker and others say that telling your kids not to talk to strangers is stupid and ineffective anyway. It is much better to teach your kids HOW to talk to strangers and HOW to deal with an interaction when it goes bad. Mainly this involved giving them the right and the power to say NO and to tell you what happened and to ask for your assistance in dealing with it. So, we have gone over that, but it is always good to go over it again. My dad telling them not to talk to strangers was confusing for them. I just told them it was an old fashioned thing to say. They actually do handle the multiple interactions with the public that they encounter daily quite well. And have also appropriately referred to us when things got weird. (i.e. a woman on the Max freaked out because they were traveling with Nik and not their mother. At first they answered her, but then they said, “Talk to my dad about it.” They tend to call him “dad” in public, but refer to him as stepdad at home. So they get context and making interactions easier on themselves.)

They also are extremely transit savvy. They know how to identify a bus stop sign, they know which stop things are at on the Max. They understand that TriMet personnel are-whatever the term is-“mandatory safety officers” so that if they ever should get lost and have stayed in their spot longer than is comfortable to wait to be found, they can go to any bus stop or flag down any bus (or press the emergency button on the train) and tell a trimet employee that they are lost (and then give them our name and address.)  We always make sure that we do a count before and after getting on and off any bus or train, but there is always the small possibility of getting separated on transit.

But, I think they are well equipped for their age and are far ahead in maturity about this than many of their car-driven, public schooled, able-bodied so they blend in, counterparts.

Thursday VH

Kids went to VH today and then Naim went to D’s while Aaron went to his friend Stockton’s house and then to D’s. Discoverers, Measure for Treasure and Drama, I heard nothing about them except it was a good day and they “played and did the usual.”

Avery and Nik went to Little Villagers. Avery played a lot with Jacob, the boy who is just a few weeks younger. No parallel play for them, they were actually interacting apparently. He was Meh on circle time and was NOT GOING TO DO the art thing under any circumstances. Which was something about drawing their outline. Other than that, all ok and Teacher Terri is going to run with Nik in the 5K Turkey Trot, so I think the kids and I will do the 1K.

At home, Avery has a definite “bye bye” and a definite “yeah.” It came back!

The Viking Fetus lives on! These two are only a few weeks apart in age and Avery towers over him.

Hanging out on the little rocker.

VH, Night School, Packing

I went to VH with Avery today. He is getting to like the routine there (except art) and so I think Nik and I are going to have to suck it up and make ourselves keep going. (We were thinking that if he is not getting anything out of it, we would quit, because we both sorta hate having to take him and sing “Wheels on the Bus.” ) He is starting to participate a bit in circle time. He put his finger on his nose when everyone else was doing sort of a sign for cat (whiskers on cheek.) He will put his hand up and stretch during “the old grey cat is waking…” stuff like that. It is not what I would call completely participating, but their are signs of life finally. The weird thing about that is that when he brought him to Little Villagers (as guests) back when he was maybe six months old, he LOVED circle time and was very animated. Then it was like he lost it all and now is just starting to show signs of interest again. I notice the little 20 month-old Jacob a lot for perspective. He is the only one in the class younger than Avery, and doesn’t talk a lot, but his comprehension of what is going on around him seems so much greater than Avery’s. He gets the whole “Squirrel” game and what he is supposed to do. He is not near as spaced-out as Avery seems to be. I’m happy to see Avery taking some kind of notice of circle time stuff, but his actions remind me of a 10 or 11 month old. But it is fine as long as we can build on it. I hope we don’t lose this in a week or two like what often happens with him.

Aaron and Naim had Discoverers which was all good and had show and tell day. Aaron brought Foxy and Naim told about sleeping over at Dad’s house tomorrow. Avery and I peeked in when we were walking the halls during art, they were engaged in stuff at centers. They really love Teacher Bobbi.

Avery and I spent a few minutes in Naim’s drama class before we had to go do community duty. He used Avery as a prop in a game where he was a nanny. Avery was less than cooperative, so he sat on my lap and I was instructed to be invisible. Naim is really comfortable in that class and the teacher is really high energy.

I met a woman who is I guess the helper in Measure for Treasure. She was all impressed with Aaron’s art and building abilities. I said, yeah, that’s all he does. This is what the blog said they did today:

This week we will explore the idea of measuring distance.   We will take a small tour around Village Home and find different ways to measure distance with both standard and non-standard units of measurements.  We will also be able to think about how we used the measurement of quantity last week, and apply quantity to measuring distance and answer questions of “How far”, as well as considering a new way to look at the question, “How Many?”
At home, we had “night school” for a bit after dinner to get the stuff done we won’t have time to do tomorrow because of their sleepover. I will avoid night school in the future if I can help it. It dragged and I could tell they were tired. Anyway, we got this stuff done:
Math: Lesson 129 (more or less time/ longer or shorter time–easy peasy)
Naim: Letter Qq in HOP Letter/Sounds. Lesson 10 in HOP Level 1, which was -it words. Read book “The Kit.”
Aaron: -am words in Sylvan. Lesson 14 in HOP Level 2, which was -eg words.
Read “The Carrot Seed” and “Corduroy.”

VH Thursday

Nik says Avery is getting a bit more into Little Villagers. (Except Art, still could care less.) He is doing better in transitions and participated in circle time. Since taking him off dairy again, he has made an almost 100% turn around since his crabby last week. He pooped funny for about two days once we switched him over to almond milk. Then by Wednesday, he was back 75% and by Thursday he was the happy, engaging self that he usually is. Lots of communication, smiles, hugs and laughter. Makes me wonder if all of this delay might have been majorly affected not by him having autism but him being sick from lactose intolerance and just feeling too crappy to care or learn anything. The difference is amazing. Also noted that Head Start Danyelle doesn’t seem to care if he is behind on vaccines so we will again not rush to get caught up. We will do two in December at the two year and then see about a March or extra appointment for the other set. I think that will help, too. Vaccines make him cranky and sickish and when you are doing them every month, the lost time developmentally at this age is pretty substantial. So we will remain on the slow-vax schedule. Wow, that baby is like day and night on dairy. Makes me think how much breast milk/formula affected him for that whole year and how sickish he must have felt the six months we had him on WIC whole milk. Thankfully I DID read about autism and decided to try that. I think all those kids who get better with a lactose or gluten-free diet never had autism per se. And the kids who are not helped by a change in diet…are they sick with something else organic or medical? There is a lot of evidence linking autism to autoimmune stuff and CFS. It is like the child-version of CFS that affects development. Canary in the fucking mine (of pollutants, toxins, environmental crap) if you ask me.

Big kids had Discoverers and Measure for Treasure/Drama. All well. Measure had something to do with volume. Nik finally met the drama teacher. He says she is in love with Naim and also invoked Jim Carrey in regards to him. I think Jim Carrey may have talent, but his personal views have made me dislike him. But I guess the point is that Naim has some good physical comedy skills and comedic timing. They are not going to put on a play this term. They are going to possibly do a showcase, but mostly they just do acting games. Naim likes that.

Kids came home and went to Noodles with Fred and a park.

VH Thursday

Avery: Did his usual in Little Villagers. I don’t think it harms him at all to be in there, but he is the least mature kid in the class, development-wise. (He is probably the second youngest. The youngest is 19-months but more in-tune than Avery.) He likes free play and mostly plays with cars and the vacuum by himself. Circle time he seems to tolerate but does not participate in. He likes snack. He rarely has the patience to participate in art. He does ok outside and could care less about storytime. He will be seeing Jean (EI) on Monday and the new early head start teacher on Wed. I’ll see how that goes and may take him out of Little Villagers next term. It is hard for us to take him.

Aaron and Naim went to Discoverers. Did not hear much about that. Nik talked to Amy, Riley’s mom, about Naim’s request for a play date. She was polite but standoffish. She said Riley doesn’t know Naim (they’ve had class together for four years.) And she doesn’t go to other people’s houses. Don’t know what the deal is, whether it is him (he is a little over curious about her wheelchair, but it is more because his dad uses one and it is cool to see someone else use one.) Or us. Sometimes it seems like we get attitude from the parents whose children are disabled. I have no idea why. Or if it is just a class snobbishness thing. I told Naim that he could try to make an effort to play with Riley more in class. But I don’t expect this to go anywhere.

Aaron made playdough and some kind of slimy stuff in Measure for Treasure. He also said they traced their bodies and labeled the parts, and compared heights. Naim played games in Drama. Still haven’t met the new drama teacher. Will try to make an appearance soon.

From Measure for Treasure:

This week we will trace our bodies, compare our heights and read a book for the first part of class,
for the last 1/2 of the class, we will use our measuring skills to make gak and play doh to take home!