Wednesday, April 30, 2014

The Magic of Rosemary!

The forecast was for Salem to hit 88 degrees today. I'm not sure how high the temp made it up, but it was sprinkler weather, easily. I mentioned how warm it was supposed to be today to Sebastian last night. All morning long he was asking about playing in the sprinkler today, which we did. Lots of outdoor play today! Then Cooper, Trent & Sophia came over. Judah wanted to chase them down the road - Willow was suddenly not feeling good because of the heat - we went in. Sebastian played outside with his friends for a long time. I went out from time to time - telling Cooper to get off of the front balcony railing, telling Sophia & Bastian to get off of the swing set, telling Trent to get off of the swing set.. Sebastian says he tells them to stop when they are doing this stuff.. and Scott & I have told them that these things are not allowed. Cooper broke part of our back fence today. They won't be going in the backyard anymore. Apparently he was climbing along it.. he likes to climb... good for him, but we can't afford another ER bill & I don't want a horribly injured kid on my conscious.

Sebastian was bothered after we discovered tonight that his friend had broken the fence. He is afraid Cooper won't be allowed back (by his parents). I don't see that happening. Scott & I pulling the reigns is much more likely.

Bastian's friends wanted to come in for ice cream today. I didn't have nearly enough and had to turn them down. That was a first though.. being the mom asked by the group of neighborhood kids for a snack, ice cream even! Suddenly I felt like an adult.

Judah REALLY wanted to go outside & play with Sebastian's friends. I hated having to trap him inside (that's what it felt like). Willow was in the bath at that time, so I had no choice, but even when she wasn't I still kept them inside. When Sebastian's friends were inside, Judah was in the middle of them - so he did get to engage with them some.

Judah made strides today. He came up to me this evening in his pull-up to let me know that he wanted pajamas on. He said, "I want ajjaaa". I had no idea what he had just requested. I told him "okay" and had him lead the way. He walked to his bedroom, opened his pajama drawer, picked out pajama pants & put them on after I laid them on the floor. Then he found two McQueen shirts and studied each one of them closely, finally deciding on one, which happened to be the easier one to put on (thank goodness - I wanted his success to continue!). He tried for minute to figure out how to start with it, I finally just opened up the shirt and laid it on his head, he did all of the rest.

So when he requested the pajamas he knew the sentence, "I want.." but he didn't know how to say the word. The "I want" has been drilled in. We need to practice words and other forms of sentences, a lot. He'll get it. And what about leaving him in a pull-up.. that was just an accidental circumstance. But if he's in positions where he has to speak in order to get what he needs or wants, then he will have to try. They do this at school, he gets bites of a snack, then he asks for more, 2 more bites given, he has to ask for more again, etc. He has that down. But that's still the one they do.. over & over, all year long. He has stopped using the PECS book and says "I want... " every single time with no prompts, saying it a few times until they get around to him & give him the food. Obviously he needs a new step.

I did "hands down" with Judah today (Star Program). He did it every time! He was agitated of course- he wanted the toy (the bribe I was holding), but it's so amazing that he did this for me. One time is incredible, but 3 times is AWESOME!! I love how he repeats me. He doesn't have to say it - but he does! Every time! "Hands down!!!!!" hahahaa

Judah talked to Sebastian one-on-one while they were outside playing in the sprinkler. I'm not sure what was said but Judah started to get on Sebastian's bike, Sebastian was still talking and trying to assist him. Judah was so happy with this conversation, I could see it in his body movement - and it was obviously good communication.

Willow was hyped up and hilarious tonight! She is so loud. Sebastian got out something that he wasn't supposed to and I hear Scott say, "You know you aren't supposed to get that out! Willow likes to go under it..." Willow heard her name, her head popped up & she RAN into the living room, eager to get in on the chaos. Tonight she grabbed her pajama pants that I had asked her to put away earlier.. she opened the dryer (it was running), threw them in & tried to climb up the dryer. She yelled for me to help her, I did, she pressed the button.. and the dryer started back up. She walked away, throwing her hands in the air & shouting, "I did it!! I did it!! I do, I did it!!" Her voice is great. It's unexpectedly low, rough & loud! I love it.

Judah initiated physical one-on-one interaction with Willow today. This communication happened while playing in the sprinkler, just like it did with Bash. I think I caught the Willow communication on video - that's a rare one. When Judah is happy, doing something he loves - then the progress shows. It's hard to find that stuff though! I need my helper to start so we can go places!!

Willow was excited to wear the swim diaper today. She said they were like Judah's! We need to get that little girl potty-trained and in a real bed!!!

I'm trying to find a good kid vitamin for Sebastian (Willow may be too young?). He is willing to take them. He's willing to do a lot of stuff like that - we just forget to ask, halfway assuming he will refuse.

Willow had to get "ready" when we left to take Sebastian to school. See the outfit below. She is a character!!!

She calls the backpack her "baby backpack" because it is stuffed with baby accessories (that she never uses). Her sunglasses she calls "Sophia", as they are Sophia the First sunglasses.

Oh! Rosemary, our trainer, came to do Judah's massage today. Holy crap, that was magical! He did all of the things they said he would do! I couldn't get him to do nearly any of what I saw today. She showed us ways to keep him in good positions, when to change methods, etc. She filled my mind with information & motivation as I watched her massage Judah (who was basically limp in my lap & humming). Put into perspective for you here - Judah had JUST been taken away from his French fries & his train track was "stuck" in the other room - always a very upsetting situation for him. It took 2 minutes for her to massage him down into a peaceful puppy. It wasn't all easy though - but she figured him out quickly. When he resisted she would often encourage us to help & give us specific instruction. We got him swiftly back to puppy heaven every time! Scott did a lot. I thought he was starting CPR when I saw him massaging Judah's chest, it scared me! He's good at the patting though. My entire technique needs work. Sebastian said he would be okay with me doing the massage on him. We will be massaging Judah on the table or floor now - this works much better than a jiggly bed. Willow & Bash weren't too weirded out with the whole thing. They both interrupted many times.. Willow came over & nearly bounced on Judah's head as she bopped along on the big yellow SpongeBob ball. Nearing the end of the massage Judah banged his head hard on a piece of furniture. I could feel the bump forming as I held my hand on his head. So that pretty much killed the relaxation for him, haha.  But he was doing the humming & reacting to the massage like they had told us he would during training. It was really amazing, truly amazing.

We'll see her again on Saturday.

Judah did not poop today.

Judah took Oxymag today, one teaspoon. He had 1 tablespoon (one dose) of his prescribed L-carnitine. He had a little over a dose of Docusate Sodium. I put one dose in Hi-C and he could taste it - he didn't drink much. He had 2000 i.u. vitamin d, he had none of the folinic acid with b-12 (we are waiting on it to come in), 1 tsp. fish oil, one probiotic & no nose drops. He had no Miralax . He had 1 of his amazing sleep pills- Sleep Factors. It knocked him out quickly, as usual. He had 1/2 Bethanechol two times today.

Tuesday, April 29, 2014

Good Morning, Punch In The Face!

The kids are watching some Harry Potter and snacking on popcorn (well 2 of them are). Apparently we are allowing Harry Potter now.. Daddy needs to keep me filled in on this stuff!

Judah is watching Thomas the Train on my phone, naming the trains to Sebastian and informing him when they crash. He can say James, Percy (purdy), & Thomas (top-um). Sebastian is bragging to me about Judah's speaking, which in turn encourages Judah to continue talking to Sebastian with his big smile & sparkling eyes. Siblings rock. Tonight Willow was in an up/down mood. When I suggested Sebastian help her brush her teeth, she took off to the bathroom! She was so excited that Sebastian was going to help her!

Willow & Sebastian had lunch with Gramma/Papa today. Gramma brought an I-pad over. I'm really excited to see where this takes Judah!

Gorgeous day today - I'll post a few pics. By the time we were all home & settled, we weren't left with much time to play outside. Scott was gone all night, so I was on my own doing dinner, baths, trusting the 6 year old that they are allowed to watch Harry Potter, triple-checking Judah's meds & trying the QiGong massage on him again. Judah was wallowing around after his sleep med. He handed me his Leapster, wandered off to the bathroom, where I found him standing on the stool, looking at himself in the mirror. I helped him brush his teeth. Then he wandered off to bed. I laid my QiGong book down at his feet, dimmed the lights and started his massage. Getting him on his belly is such a struggle.. that could take hours! And at that point he would be completely agitated! So I did my best, working with his position. He fell asleep pretty quickly, but still waking every 20 seconds to pull away from me, fight me or look at me like, "What the hell are you doing???" I'm just tapping your head Judah.. pushing the energy in..  The last steps were on his lower legs & toes - these were the only ones that he allowed with absolutely no struggle, he seemed very deep in sleep. I'd like to believe that toilet training & sleep just improved, as it said in the book.

I took notes during the entire speech session today. Mom had Willow & Sebastian (she picked Bash up from school & had Willow since I had volunteered in Judah's class). I'm going to show them to Scott so he can get an idea of how little Judah is saying during speech. Last week was the same, hardly anything. Is this the best road for him to go? Is there another way that could be more effective for him personally? These thoughts start up in my head. What do we need to change?

School didn't seem to reel with progress either. He goes from station to station - here you do this, here you do this.. books & puzzles now.. go, pick one *and figure it out on your own*.. the lack of enthusiasm and personal interest from the aides was really depressing. Some of the kids livened up when I took personal interest in them & interacted with them one-on-one, following their lead. Do they not get this every day?? Every kid I spent one-on-one time with had this reaction.

Of course his teacher was MIA. The usual sub was there. The kids were split into two groups of four, going from station to station with their group the entire class day. Each station had one staff. There were four aides and one substitute teacher.. you do the math. What were these other staff doing during the times that students weren't at their station...

My school schedule was completely wrong - Bash has school the rest of the week. Judah does not.

After speech I ran over to the City of Salem office to register Sebastian for 2 summer camps. The only way to register is in person. When I registered them for soccer quite a while back, I ended up there with Judah - who was having behaviors. Today - same thing. He threw himself to the ground once we got to the door. A smiling business man held it open for us. I let him know we were not going in, after we had basically almost just walked in. He kept holding the door. "It's okay" I told him, as Judah laid on the cement floor screaming. We walked around the building for a while. Eventually Judah was able to go in. Of course, this was after his many attempts to get through the doors leading to construction - nearly making it once. Once inside, he grabbed crayons, colored below the counters and threw papers. A lady stood next to me as I filled out the registration forms, she giggled as Judah threw a paper from the desk. She stopped giggling when he continued throwing the paper & I didn't do anything about it. He could throw that paper all day - totally fine with me. But of course he didn't. He took off down the runway of cubicles, throwing himself on the floor, running back nearly knocking people down. "Well hey there!" - people said things like that to him. As I'm almost done filling out the forms, I look down because I realize that he has stopped moving and is standing next to me. Bright, thick, red blood is quickly trailing out of his nose. The ladies around me panic - the staff hands me tissues. The lady helping me with the paperwork tells me that the same thing happens to her all the time. That's kind of a strange thing to try & relate to, spontaneous bloody noses, but whatever.  That bloody nose lasted for HOURS. He was burping at school & more when we got home, pointing to his throat saying "stuck". I thought for sure I was going to see him vomiting blood at any second. Never happened - I'm thanking my lucky stars for that one.

This morning I opened my eyes to see Judah's big, sparkling hazel eyes looking straight into mine. A small smile spread across his face. Then, WHAM!!! He punched me hard in the face! Good morning to you too son.

I'll write more details on school & speech later - i have notes! I need sleep now.

We skipped B-12 shot last night. The new B-12 didn't look bright red like the last vial. We weren't risking it. Waiting to talk with doctor. Scott did the poop samples & sent them into the lab today. Now we can start nose drops & probiotic again.

Judah pooped one time today, as soon as we got home from school. Maybe he's going to get on Sebastian's schedule. :)

Judah took Oxymag today, one teaspoon. Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp. fish oil, no probiotic & no nose drops. He had no Miralax (his poop is liquid!!!). He had 1 of his new sleep pills- Sleep Factors. It knocked him out quickly - either that or my massage technique is incredible, haha. He had 1/2 Bethanechol two times today.

Monday, April 28, 2014

Willow Dancing!!!

Scott took the kids to the store to pick up my migraine med. I ran out of it last night. I took it as soon as he got home.. not long after that I took Tylenol... then ibuprofen. By late afternoon I was feeling back to "okay" again.

Later he took them all to the park. They had an amazing time - lots of running after Willow! :) It was a gorgeous day. Daddy & the kids were smiles, laughs & energy all day! All 3 of the kids were dancing in the boys' bedroom, holding hands in a circle and jumping around! Willow came out and motioned for me to come back, "Come on!" I joined in their circle for a while. For the next hour or so Willow would occasionally hop into the boys' room and dance.. then she would run out and say, "Willow dancing!!" She's a good dancer & runner & galloper all of a sudden!

I think Daddy enjoyed his very important work day off. Sorry Scott. He had some awesome play time with the kids & Pixie.

I was collecting plates after dinner tonight (this never happens). I asked Willow if she was done & took her bowl. I looked down to find Judah looking up at me, smiling with his eyes. I asked him if he was done, he didn't say anything, just smiled, & I took his bowl too. Sebastian ate a lot of spaghetti tonight. He ate raw carrots, bread & a cookie too. We never have desserts with dinner. We rarely have desserts during the evening at all. Sebastian assumed the cookie on his plate would not be edible until he had finished everything else. Scott told him that was not so, but that he did want him to eat his carrots too (Bash was already eating everything else). Sebastian ended up eating more than he usually does, and with a very small fight.

Tonight I tried the massage on Judah. I definitely need some practice on this! Just keeping him down on his belly was a bit of a challenge. There was only one point when he seemed to be relaxed. Most of the areas of his body he did not want me to touch (which surprised me since he is such a physically affectionate kid). Overall his attitude seemed to be, "What are you doing??" This was the first time he had ever experienced the entire massage. So that was a factor too. And I should have had dimmer lights on. But we were able to find a secluded space & were not interrupted for 30 minutes!

School is all messed up this week. Sebastian had no school today but does have school tomorrow. Judah has no school tomorrow but will have school on Thursday. Sebastian will not have school Wed-Fri. So basically Judah & Sebastian have reversed school schedules this week. Maybe I'll just take them both every day & go to the building that has people around it. Better safe than sorry! haha. We did miss Judah's school day one time when Sebastian had no school. WESD school days are supposed to be in sync with public school days - that's what they tell you!!!

Thursday at 1 will be our interview with one of the ladies from the college.

Judah's new sleep med seems to be working well! Judah pooped one time today.

Judah took Oxymag today, one teaspoon. Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 1 dose of Docusate Sodium (missed one), 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp. fish oil, no probiotic & no nose drops (preparing for lab). He had one Miralax. He had 2 of his new sleep pills- Sleep Factors. That was crushed & mixed into his nightly applesauce dessert. He had 1/2 Bethanechol two times today. 

Sunday, April 27, 2014

Scott is AMAZING

I was out with a migraine most of the day.

Sebastian had friends over - Cooper & Trent. They played in Sebastian's room with him - apparently they got it dirty with their muddy shoes. I heard Scott telling Sebastian he had to clean his room up (after they had gone). Sebastian didn't want to - he said that Cooper & Trent had made the mess. Scott said, "When you have friends over you have to clean up the mess!" haha.  Scott said they all played in the backyard. Scott kept them off of the swing set. Wow! Scott, Willow & Judah engaged in all of this play too. Then everyone moved to the front of the house. Scott made the boys wear a helmet each time they rode Sebastian's bike - there were only 2 helmets & 3 of them. Cooper & Trent did not like that. After a while, Cooper & Trent told Sebastian they would be back with their own bikes. Scott baked cookies for everyone after they left! Unfortunately the boys never came back. Scott told the kids that they had more cookies now, to make them feel better.

Holy cow! Scott is amazing! Usually when the neighborhood kids are here I am constantly managing them - "Get down! No, it is NOT okay!" and even reminding them when it is time to go home. haha. Scott did AMAZING!

Judah took the new med, Oxymag today, one teaspoon. Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 1 dose of Docusate Sodium (missed one), 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp. fish oil, no probiotic & no nose drops (preparing for lab). He had one Miralax. He had 2 of his new sleep pills- Sleep Factors. That was crushed & mixed into his nightly applesauce dessert. He had 1/2 Bethanechol two times today.

Saturday, April 26, 2014

Qigong Massage Training

Scott & I went to a 3 1/2 hour parent training on Qigong massage today. It was very interesting. Supposedly it can help with pretty much everything - honestly it sounded way too good to be true & some of it sounded so ridiculous I couldn't hold in my laughs. BUT, if our pediatrician believes in it (someone who does much research & attends workshops on these approaches, even practices these methods on herself & is someone we trust), and good friends that I know use it (one tells me she has seen changes in her son) & friends we've met recently are all ready to try it (they showed up to the same training!).. and we are willing to try anything (which would be enough).. then yes, absolutely we will do this.

This happened 2 days later- Scott tried parts of the massage on Judah. Judah did the "humming", as we were told during training that a lot of kids will do. That was something I absolutely thought Judah would not do.

During the training, she told us to place our open hands, palms facing one another, about 5 or 6 inches apart & hold them there. I instantly felt energy between my hands. That made me a believer in a small way. During this exercise, apparently Scott was reminded of an old TV show he used to watch and was trying hard to make lightning appear between his hands. Haha! He was holding his hands in this position well beyond the point when everyone else had stopped, haha.

So yeah, we walk into the training and see Shane. Shane is always around. He seems to always be researching & feeding his brain as much as he can with information on autism. He's newer to it than us, and has definitely gone beyond us as far as research & attempting different approaches & ideas. He was in our class recently and is in our support group.. so obviously, he would be here as well. In front of me sat a girl I recognized but couldn't place.. then I realized she was the mom I usually see outside of Judah's classroom. She is the only other parent of a kid in Judah's class who makes an appearance at school - she is there every school day, just like me. Her son recently started in Judah's class, 3 weeks ago. I gave her my email at the training. Connections in this new world of autism seem to vanish sometimes, so now I make a point to reach out & connect as much as possible with anyone we come across that lives in this world too. After our recent parenting class ended, I sent an email to the teacher asking her to share my email with everyone in the class - to keep them as connections or just to be another resource for support. That's how hard it is to hold onto others - support is crucial, but often forgotten because the world of autism seems to swallow up your life. Last week I invited 2 parents to a play date that my friend has every Friday - a play group geared towards kids with autism & their siblings. Unfortunately neither replied. Maybe they haven't reached the realization that utilizing support is one of the best things you can do for yourself & your kid in this world.

During a break in training, we talked to the mom from Judah's class. We found out that she was going through so many of the IFSP issues we had been through not long ago. She was also feeling the same emotions I was about the constant classroom staff turn-over. It's nice not to be the only one going through this. Scott & I offered her ideas & support. We told her some of our story as well.

Our first appointment with Judah's massage therapist will be on Wednesday at 1pm. She will come to our house.

I started not feeling so great after class. Mom & Dave had the kids all day. Scott & I were able to go out to eat after class. We were able to spill out lots of things that had been in our minds recently that we had not been able to find the time to talk about. We need to do that on a weekly basis - that feels really important.

Judah took the new med, Oxymag today, one teaspoon. Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp. fish oil, no probiotic & no nose drops (preparing for lab). He had one Miralax. He had 3 of his sleep pills - Magnesium Citramate 135 mg. That was crushed & mixed into his nightly applesauce dessert. He had 1/2 Bethanechol two times today.

Friday, April 25, 2014

The Fiesta Friday Heartbreaker!

Judah was trying to use "more" and "I want" in longer sentences. Words were fumbling around, just not coming out the way that he was trying to say them. I can't even imagine the magnitude of frustration that would surge through me if I were experiencing that. He's a fighter, and he fights more when you believe in him.

We bought a rocking chair from a guy in our neighborhood for 5 bucks tonight. It's big. It's nothing pretty, but it's really nice mentally. I had Judah in my lap and we rocked for quite a while this evening on the front porch. It seemed to soothe him. We didn't stop until he said, "down", looked me in the eye and told me, "want". He was letting me know that he was about to get down, it was very sweet.

"That's funny." Willow says this often, it's so cute. "Bastian's funny." I was trying to get her to sleep tonight & she looked up at me and said, "Mommy" and then closed her eyes. That somehow made all my worries just melt away.

Gramma cleaned the house while I volunteered at Sebastian's school. WOW. I came home & wondered if we had been gone for days, not hours. Thank you so much Mom!!!!!!!!!!!

Judah tried his brand new Thomas Ultra e-book. He seemed to really enjoy it. Navigating those learning games has not been an issue for him yet, at all. Susan- I forgot to tell you that we bought that.

Judah had a couple messy poops. Unfortunately one of those happened when Gramma was here, a big one. And she STILL managed to clean the house. That poop alone would have taken me hours! Not to mention taking care of Judah & Willow too! I'm baffled Mom. Was someone else here????

Judah wasn't cooperative about going to the bathroom today. It took some physical motivation to get him headed in that direction. Once there, the picture strip didn't work the magic it did yesterday - but he was still looking at it & from his annoyed face & sounds, I'm sure he was understanding it. I didn't use a lot of verbalization to get him to the bathroom. He was trying to predict when I would tell him again that he needed to go potty, he would get upset and fall to the floor.. and then look up & realize I hadn't even said anything. He hasn't been in underwear often enough lately.. must work on that.

Today was Volunteer Appreciation Day at Harritt. As we drove into school, we could hear chanting from both sides of the road, "VAH-LUN-TEERS! VAH-LUN-TEERS!" These groups of kids were holding huge banners that they had made. Sebastian was sort of in shock. He walked out of the van with his mouth open & his eyes looking everywhere but forward. After I dropped him off, I searched for a parking spot, then headed inside.

Once inside the school, I headed to Sebastian's classroom to drop off his Star of the Week items. His class was lined up & leaving the classroom when I got there. Fiesta Friday was starting in the gym! Sebastian always looks forward to Fiesta Friday. He was super happy that Mommy was going to experience it today!

Music played as everyone entered the gym (it was the song Sebastian always sings very loudly at home). Once all of the students were settled, the principal called off the names of all of the school volunteers, very rapidly. I couldn't believe how many names he had rattled off. Then he took a big breath and said, "Okay, C's.." It was unreal how many volunteers were on that list! Especially for such a small elementary school! For some reason, there were only a handful  of volunteers that showed for the Fiesta Friday celebration. I went to the front when my name was called & accepted my awards. Then some of the chosen volunteers attempted to score a goal on the principal as he acted as a goalie inside a standard size soccer net. The principal is a pretty healthy guy. Getting a ball past him wasn't an easy feat. After that came the dancing. Sebastian got to come to the front & dance with me to all of the songs. Everything happening during Fiesta Friday was in Spanish by the way. Every single teacher there was full of energy, smiles & fun.. it was pretty amazing.

After the big celebration I stopped at the lobby for coffee & snacks. I talked with the principal for quite a while after the subject of bilingual parents came up (he was talking to another parent at the time). I interrupted & told him that Scott & I were not bilingual and were a bit nervous about helping Sebastian & communicating with him to support his knowledge of Spanish in the next year and beyond. He basically said that Spanish speaking parents who send their kids to English schools feel the same way - OK, no kidding. Then he added that an idea had come up at the last Parent Club meeting - apparently they were considering having a weekly meeting to help parents in this situation. But they didn't know what time/day would work for everyone. He made it sound as if they had already decided to shoot down this idea. I told him the school could send out information, including the times & days these meetings could potentially take place & ask people to circle the time/day that would work best for them - majority rules. I told him that there were probably a lot of parents like me who were not aware that this idea was being considered & who would make time to participate in these meetings because it is a very important issue! It was like brain-storming with Sebastian's principal- completely not what I was expecting to do this morning. He said they could do emails (to save money probably) and put all of the Parent Club meeting notes in the emails. I'm betting he will follow through in some fashion. I told him that we never make the Parent Club meetings due to schedules, but if the school was to offer weekly bilingual help to parents, my husband and I would make the time to go. Then I realized that I was supposed to be volunteering in Sebastian's class... and he was going to do his Star of the Week presentation... and I took off!

In Sebastian's classroom..
The teacher asked the kids to come up with 4 or 5 sentences that describe Sebastian & she wrote them down on a huge piece of paper in front of the class. She did the same for the other kid. There are 2 Stars due to the class size. She displayed these papers on each side of the room. There were 3 tables which each had a pile of papers labeled "Sebastian" & 3 tables for the other kid (who happened to be Sebastian's good friend, Chace). The kids each picked a sentence about Sebastian from the huge paper the teacher had just made & wrote it on their paper, and then they drew/colored something related to that above their sentence. They did the same for Chace. The teacher's assistant bound all of these papers into a book for Sebastian to take home. After that Sebastian presented the items he had brought to school - see videos below. Then the teacher read & showed the papers that the students had just made - every single one of them. It was pretty incredible. He had a long presentation!

Sebastian's Star of the Week presentation!

The "reading buddies" came in next (2nd and 3rd graders). They were going to read to the Kindergartners. One reading buddy per one or two Kindergartners. Sebastian & another student sat with a 2nd grader (I'm guessing) and listened to him quickly read a book in Spanish. Sebastian looked bored out of his mind. I kept telling him to listen & pointed at the book. But I really didn't get the point of this if the Kinders weren't participating. I would be bored too.

We walked out of class & the teacher stopped me .. "Did you know that Sebastian is the class heartbreaker? ALL of the girls have crushes on him. They all want to marry him! I think it's because he is so nice. It is so cute!!" Ha! No, I did not know that!

We forgot Judah's B-12 injection yesterday. We will do that shortly.

Judah took the new med, Oxymag today, one teaspoon in his smoothie. Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp. fish oil, no probiotic & no nose drops (preparing for lab). He had one Miralax. He had 1 of his sleep pills - Magnesium Citramate 135 mg. That was crushed & mixed into his nightly applesauce dessert. He had 1/2 Bethanechol 2 times today.


Thursday, April 24, 2014

Sleepy Dog

Scott telecommuted today. I was able to leave Willow at home while I took the boys to school. I dropped Sebastian at school. Then I drove out of the parking lot onto the road. Judah suddenly says, "That way!!", while pointing in the direction we would go to get to McDonald's. This is something he does on a nearly daily basis when we drive out of the school parking lot. I say, "Sorry, Judah." While I'm approaching our next turn, he points straight ahead yelling, "That way!!" That one was odd, we never go that way. I ask him, "What's up that hill Judah??" As we are driving down our usual path home, I tell him, "Judah I'm sorry. We have to go straight home this morning." And then it hits me.. he has school today!! He was trying to direct me back to school! haha.

We made it back to school on time. I ran into the mother of one of his classmates while we were walking up to the building. Her son is fairly new in Judah's classroom. She is the only other parent that brings her kid to school & picks him up. So I see her quite often. I asked her if she knew what was going on with the teacher & she told me that the only time she had seen her was on her son's first day of class, the day that she met her! Judah isn't as carefree & excited as he used to be when walking into class. He doesn't seem quite sure of things. He still does his arrival routine well though. His cubby location is different nearly every single day - the cubby name tags & photos are velcroed on & get moved around a lot. But he still finds his every single time! Velcro is used everywhere in the world of special needs.. in an autism classroom you'll find more Velcro than you would in a toddler tennis shoe aisle.

Next week WESD has classes only 2 days - Monday & Tuesday.

Rachel & I talked after Judah's class. Willow & Sebastian were in the van. Sebastian wasn't listening well on the playground - going into the mud after being asked not to, not coming with me when asked to, etc. So we headed back to the van early & they had to wait there while I got Judah. This worked out incredibly well - Sebastian started taking me seriously for a while and I was able to have a conversation with Rachel with no interruptions, rushing or sprinting! Eventually Sebastian did open the van door & yelled out for me. It's not a perfect world.

Rachel said Judah wasn't responding to his name much. I told her he is at home, mostly. We talked about the Star Program work - they are doing "hold my hand" and "walk with me". He did "hold my hand" pretty well - but that included a gesture from her. The next step is no gesture. "Walk with me" I don't think had a lot of success. For "hands down" he was hitting his head?? He's probably so sick of doing that one - we do it a lot here. We haven't done the other two yet though.

Rachel is trying to change up the "I want chip", probably since I told her that he sounded like a caveman. She is trying to get him to say "more chips please.. I want more chips", stuff like that. She had no success today. But tonight he really wanted chips & he told me right away, "I want more." and followed that with, "More please." He was in the tub - getting to the chips would not be a comfortable task.

Judah also said, "No, no, bad" very clearly, out of nowhere this evening. He said "cup" again, but this time saying "Pete" as well. I finally put that together - Piston Cup! I'm not sure completely - his reaction wasn't ecstatic, but that definitely could have been what he was saying. He suddenly had more confidence to try other new words on me directly following that - I don't think I understood any of those.

Judah was getting ready for a bath and I asked Willow if she wanted a bath. She was standing near me in the bathroom. She made it very clear that she did not want a bath & walked out of the bathroom. Judah then said, "Bye, bye baby." haha! He calls her "baby". I think maybe separating their baths might be what Judah wants.

That little "baby" played a lot of guitar this morning! I have an old guitar with 2 strings - one string dangling from it and one string still attached correctly. I gave it to Sebastian years ago. He got it out this morning & played it while singing, "The Farmer In The Dell". That attached string happened to hit one of the correct notes in the song from time to time! When he was at school Willow sat in the time-out chair and played the one-string guitar for a long time. She had one song that she would do repeatedly, even after she wandered away for a while, she would come back & still remember it. It wasn't really words, but more just sounds (to me anyway, to her it was words I'm sure). Scott came out to hear her play. We became her audience. Finally he told her that he had to go back to work. As soon as he left she began singing, "Daddy go back to work... Daddy go back to work... Daddy go back to work.." after every line she would bend her elbow & throw her thumb back in the direction Daddy had gone. It was hilarious.

Sebastian did LOTS of sock matching today. I hope he is beginning to see the connection between not listening & doing things he doesn't enjoy. His sock matching skill has definitely improved - added bonus for Scott & I!

When we played bubbles outside, Judah was the only one who could figure out how to use one of the more unique wands. And he did it on the first try - he knew exactly what to do. I thought that was interesting. The other 2 never got it.

While in the bathroom today, Judah wasn't responding when I told him to pull his pants up. He usually doesn't - I think he is just doing it when he realizes on his own that he needs to pull his pants up. He may not be understanding that request? I don't know. So I got out the bathroom picture chart & pointed to the picture of the guy pulling up his pants. Judah pulled up his pants right away! I pointed at the picture of hands being washed & he studied it. Once I said, "wash hands" he understood. So it works both ways for sure. We tend to forget the visual aids though - obviously those can be really important & helpful.

Sebastian finished up his Star of the Week paper & we practiced his poster presentation. He came up with some fun stuff to say! I loved it. Tomorrow he will present that to his class. I'm so happy that I get to be there to watch this! And to experience Fiesta Friday! And to go to the little party they are setting up for the people who have been volunteering. :) (free breakfast)
Scott did the Star Program work with Judah this evening. I'm not sure how it went, but they stayed in Judah's bedroom for over five minutes - which is good!

Judah took the new med, Oxymag today, one teaspoon in his almond milk concoction. Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp. fish oil, no probiotic & no nose drops (preparing for lab). He had 2 doses of Miralax. He had 2 of his sleep pills - Magnesium Citramate 135 mg. That was crushed & mixed into his nightly applesauce dessert. I walked up to him while he was eating that, only to find blobs of applesauce on the table in at least five different places. I had walked in just in time to see him tossing applesauce from his spoon straight into the air, landing on his head. And I looked down at the floor to see Pixie licking all over the floor, at least SHE will sleep good tonight. Judah had 1/2 Bethanechol 2 times today.

Wednesday, April 23, 2014

Talking In The Van

Judah was saying sentences behind me in his car seat while we were driving in the van. I swear I heard him talking. Was it being in the car - did he think no one was listening - was it the long ride, boredom? Maybe he didn't want to watch the movie we had on? Perhaps he was happy that he got a sucker from the bank? I think the sucker had a lot to do with it. They each got one, he was so happy. I threw Sebastian's sucker back to him. Somehow it landed in the far corner of the bench seat, apparently falling into an abyss, never to be found again. We looked hard! Judah told me what his sucker tasted like while he was licking it.. I can't remember what he said now! I repeated the word & he smiled. During his private talking moment it sounded like he was saying that he wanted milk, then "I want a cup" was somewhat clear to me. A little while after this magical moment, I asked Judah, "Did you want a cup?" His smile was huge!!! Maybe all of this wasn't my imagination??? I swear he had just been sitting there, talking to himself, but how could that be???

I'd love to have the added perspective that someone who talks to him once a month would have. They would hear the change/progress so much more clearly.

I asked Judah & Willow to clean up in the playroom. I sang the universal clean-up song. (Sebastian's class sings it in Spanish) Judah looked confused as to what to do. He was playing trains in the midst of an explosion of toys, none of which have an actual designated spot - except the tub trains. But no one ever uses that system. This is basically 3 tubs,The Chuggington trains are pictured on one tub, Thomas on another.. match the trains to the tubs. Seems pretty simple, right?? Anyway, Judah played for a minute or two on the train table. I tried to get him to put a train into it's matching tub. Being the clever kid he is, he saw the picture on the tub and stuck his hand inside it to retrieve a train  - which matched the ones he was using. haha. But not long after he started tossing pieces off of the train table. I showed him how to set them down on the floor, ONE TIME. He set his next piece down gently on the floor, just like I had shown him. He was cleaning up! He went to the other side of the train table & did the same, over & over. I grabbed a random piece from the table and stuck it in one of the tubs. From that point on he placed each piece that he took from the table into a tub. He cleared every piece on that train table that was not part of his train or track. He can be a quick learner, especially when he already understands the concept - and cleaning up is one he knows (from school & therapy). We need to make designated spots for everything, for everyone's sake! The disorganization seems to be snacking on my brain, eating me alive.. I hate it.

Judah pooped this morning - first thing.

I picked up a vanity for Willow today, she just happened to be asleep in the van when I got it. I bought it from someone else. Willow was so excited to find it in the garage. I put it in her room later. She spent quite a while sitting at her new Cinderella vanity, opening & closing the drawers & smiling. She read a book there using a flashlight, she looked in the mirror several times & said, "How cute!!" hahahaa

I tried coconut milk with black strap molasses for Judah today - no dice. I tried black strap in almond milk  - no dice. Resorted back to maple syrup and almond milk to get his liquid meds down. Not sure how to incorporate the coconut milk & black strap.. both of which are very good for you!

Rainy day - no outdoor play. Sebastian & Willow played in garage some. Very stressful day around the house today.

Judah spit out a bunch of his almond milk on the train table. I had him clean up some. I had to lift the track to clean up - he didn't like that. I told him why I was lifting the track & he started hitting himself with some track. I'm pretty sure it was because he was angry at himself for making the mess. So I told him everything was okay & that we were cleaning it up. He was fine after that.

Last night I accidentally spilled the "Star of the Week" notebook that Sebastian brought home from class. So then I had to put it back together, trying to figure out who had 3 dogs and a cat.. who likes to camp over the summer.. who has family in California (apparently many of them do!!). That was a little nerve-wracking, I hope I got it right! This evening Sebastian & I were in his room working on his Star of the Week paper. As we're finishing up he tells me, "Don't worry, the teacher said she will make sure it gets put back together right." To which I replied, "You told her I spilled it??!?"

Also while we were working on Sebastian's project, he was sounding out words - he was so proud when he sounded them out correctly! It was as if it was the first time he ever truly believed that he could do it. ? Sometimes we all need that moment in order to move up. This reminded me of a tennis match I was in during high school - My partner did not believe we could beat our opposing team. We were losing badly. Once we finally got in a point or 2 she changed her perspective, became more positive & we won, we slaughtered them.

Also, while we were working on Sebastian's project... I had decided that we do it in his room, closed door, no distractions. He worked, he became proud & he did it! I'm the same way - I need peace & lots of quiet. This was completely different than doing it at the dinner table with 2 other kids flying around & a Mommy & Daddy trying to manage the chaos. That wasn't fair to him at all - I can see that now!

Bash has a very loose front tooth. He is closing his mouth, secretly playing with it.. it's not hard to tell. I'm nervous to brush it when I brush his teeth (which is still going well by the way). This morning he announced the agreement we have to Daddy - "Mommy said she would help me brush for a week and then I have to do it by myself!!" This was after Daddy had told him to just get in there & do it. Gotta keep the Mommy/Daddy communications strong, lol.

Scott made some really good gluten-free chicken for the kids tonight. Sebastian ate it. Judah ate 2 pieces and then stopped. That's pretty incredible though!!! It's not one of his 10 foods! Store bought gluten-free chicken nuggets are though- so these were similar. This is another clue as to how to get him to eat new foods - we've actually talked about this idea forever. I even have recipes for chicken nuggets. Follow through is so frustratingly difficult for us. We need a timer for Mommy & Daddy!!

Scott's chicken recipe he made up tonight - chicken cut into little chunks, roll in gluten-free flour, spice with Weber Zesty Lemon (something milder would very likely work better) and pan fry.

Scott & I both reached boiling points today. Things have got to change around here, our home & family have evolved into something new.. we can't stay the way we were, it doesn't work here anymore. I guess this happens for everyone as your kids grow up. The time left after they go to sleep (for me) is consumed by doing the blog & trying to catch up on what needs to be done around the house. It's a job. It's the hardest job I've ever had. There's got to be a way to make it easier.

Judah refused the new med (Oxymag) today. It was mixed in his usual almond milk drink - we added more syrup, still no luck! He was disgusted! Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp. fish oil, no probiotic & no nose drops (preparing for lab). He had 1 dose of Miralax. He had one pill of sleep supplement - Magnesium Citramate 135 mg. He had 1/2 Bethanechol 2 times today.

Tuesday, April 22, 2014

Marker Twins

Judah pooped. We are back on track for starting the lab - Dr. Green said that Miralax is fine to take while we prepare & a sample from the diaper is fine as well. So let's start this 8 day wait again! It just means that he is off the nose drops for 8 days - which we had little luck getting done anyway. But we will do them again after the poop lab.

Western sent another candidate! We've been in communication with her today. She sounds very qualified for the job.. and is already doing this type of work for a 4 year old little girl, but only gets 6 hours a week. She can't cover all of the hours we need - I am very curious to find out how much she can cover. Between her & the other student I'm hopeful that we can get a good amount of help! We are interviewing the first student Sunday afternoon.

Judah & Bastian both came home wearing marker today. Sebastian had a line in the middle of his face near one of his eyes. It was strange because Judah had marker in that same area, and the same color as Sebastian. And it's happened before.. I can't remember what it was, but I remember that it was strangely similar. Judah had 2 regular aides there today. There are new kids in his class as of the past couple of weeks too. He did not want me to leave him this morning, he was about 60% clingy, so I stayed for a bit - which gave me time to engage with one of the subs who was working with him & let her know more about him. I don't know what has happened to his regular teacher - I've seen her one time in the past 3 weeks (as she walked out of the classroom minutes before class was to begin). She basically just said "hello" to us & kept going. I've talked to her by phone twice during this period. It's as if she's become a ghost. Even the aides aren't all showing up now?? And the kid population is increasing - when Shelley had told me it was at it's max?? I'm guessing some of this will be explained during his review meeting coming up.

The teacher sub was the same lady who had sent us home last week. She got Judah's epi-pen out of his bag and let me know they had all been trained on using an epi-pen this morning. She opened the box and asked if she should just take one. ?? I told her that they keep the entire box & that it is very possible that 2 pens could be needed for one reaction. The box has 2 epi-pens & a trainer. She seemed very surprised when I told her this.

We ordered a yearbook for Sebastian today - it was also his snack day today. Thanks again Gramma for covering that!! The kids sang a song to him, he passed out the snack & the teacher made everyone sit down & eat!! Woah!!! It was like an actual snack time! I was very happy to hear this.

Judah followed instruction a few times when I asked him to turn out lights, a couple times when I asked him to put pajama shirts away (after I led his hand near the open drawer) and was able to do the "hands down" practice sort of one time. During this practice he says "hands down" back to me (which isn't part of the task but great that he does) and hits one hand on his leg.. not two. Today he did it on the last try (out of 3 tries) because he was really mad that I wouldn't give him his train (the reward). It took a while though. To end on a "positive note" (as we are supposed to do), I played trains with him using his reward train.

Sebastian got to school close to bell time yesterday. When I dropped him off I told him to get going or else the teacher would mark him as tardy. He questioned me for a minute or two about what that meant, which is when I mentioned that it would be on his report card. After school he explains to me that the teacher didn't call him "tardy", she called him Sebastian. And she didn't write tardy on his rewards card (report card). Ha! Rewards card - as if he was going to the grocery store, haha. I made a video of him explaining what "tardy" was.

Judah hardly talked at all during his speech therapy. He did ask for juice though. "Juice please!" - which is what she taught him. Today she tried to get him to turn that into "I want juice" - which is what he says at school quite regularly, easily and repeatedly. He wouldn't do it. It was always, "juice please". I see that as maybe he needs to understand that these phrases can be used in a variety of settings - not just one at school & home and one at speech.

After learning about time-outs during class last night I tried one on Judah when he ran out of the bathroom before putting his diaper on. He did it! I set the timer, he sat on his bare bottom in the chair and watched the timer. I had him do 3 minutes. At the last 5 seconds he took off for the train room. I put him back in the chair to finish. And then... he went right back to the bathroom and complied with no problem. I have him washing his hands after every time he potties now as well. And it's not that hard at all, usually no problem.

Judah was anxious when I put his chicken nuggets in the freezer to cool. I set out the timer & his focus went to that, and he was calm. He got on his tippy-toes, trying to see the timer because it was laying flat on the counter. I pushed it to the edge, he picked it up very carefully, cupping his hands around it so he wouldn't hit a button. Then he sat it back down on the counter & went to watch SpongeBob until his nuggets were ready. Incorporating the timer helps. We need to try social stories using McQueen when the timer doesn't do the entire trick.

Scott tried repeatedly to get Judah to stay in bed. He told him goodnight - left the room - Judah got up - Scott put him back down.. over & over. Scott stood by his door, didn't work. This is what people do with typical children. I'm thinking sand timer that he can watch & know that Daddy comes back in to check on him when the timer is up. Social story of McQueen going to bed could help. And even a reward in the morning - explaining it to him through pictures. I'm crazy motivated to do better after those classes!! The combination of learning style (Saturday class) and the mountain of parenting information from the other class we went to (on a regular basis) has helped me come up with a few ideas & plans. I've written down what we have learned & ideas that we have been given.. many are the same ones, over & over. That has helped them STICK.

Willow refused to take her new Sophia pajamas off all day long today. I didn't see any harm in this. A summer t-shirt is her only other Sophia attire & I wasn't going to put that on her. It was cold & rainy today!

Judah brought me his Leap Frog & let me know he wanted to do his Cars e-book. "Cars?" I turned it on & he sat beside me at the table, having no problem at all, enjoying his story & pressing buttons on the screen to interact. When the activity was over he handed it back to me & got up. Sebastian sat on the other side of me filling out his Star of the Week paperwork, haha. It's fun though. Tomorrow we will be writing it all in Spanish! He wants to take his huge yellow poster that he made in preschool as his item to show everyone. I proposed that idea & his mind just got stuck on it. That happens often. I need to keep my mouth shut. I asked him repeatedly if there was something else that he really wanted to take - nope, just the poster!

Headache has been drifting in today. Doing good right now.

Judah said "I want cars" a million times in the car today - meaning he wanted to play on my phone. I usually don't let him do this while I'm driving. I told him, "I know you do. We can do that when we get home." and turned away. He knew what that meant. He got angry and hit his head with his hand a couple of times but after that was very calm, just unhappy that he couldn't have the phone. He continued to ask - I did not respond & he did not get upset. Just saying this once seemed to help a lot. I did the same with the other two today - just said it once. This worked pretty miraculously. We tend to over-talk with our kids instead of making it simple & clear. Today I tried extremely hard to set clear boundaries, and not throw in a question & to give a warning of what would happen if they didn't do something. Sebastian had to match socks for half an hour today - because of a behavior this morning & one yesterday. He did not get the usual luxury of having the TV on. Anytime he stopped matching socks & started playing the timer got stopped (timer is very helpful). Suddenly he seemed to understand that this was not fun & he couldn't make it fun. I told him that if he wasn't matching socks then I would not be talking to him (clear warning). And I followed through on all of this. Sister became a distraction, but I could easily move her & fixate her on something else. Judah became a very physical distraction, but luckily not until the very end. I did not congratulate him for doing his task as I usually do (Super Nanny you are wrong!!). That also seemed very effective, and felt like a much more sensible thing to do.

Sebastian's friends came over & asked him to go around the corner to someones house with them. He asked my permission. I was able to stick to our rule - and he did not get upset - he just let his friends know what he could do & was not at all embarrassed about it. He yelled from our house to his friend racing away, "I can't go past the mailbox Cooper! I don't want to be left!" He was still able to play with them. He played for a short while with his friends and then came home and wanted to play in the garage with his siblings. He was never upset. I think we are more nervous about this than he is!! Scott & I talked about this stuff tonight & made clear rules for friend situations that are arising.

This evening Sebastian sat in time-out while everyone got ready for bed. He did very well, reading a magazine. He tried not to talk - that one is really hard for him. I made my presence known but none of us stayed in the living room with him. Also I told him to use his sand timer for brushing his teeth, to close the bathroom door & to come out as soon as he was done. Two seconds after entering the bathroom he came out & requested that I brush his teeth for him. ?? Usually that is something we tell him we are going to do if he doesn't do it himself - and he gets upset! I think he was afraid he wouldn't do this task correctly maybe? I made it clear that I would only help if he allowed me to do it without him playing around. Total success. He wants me to do it tomorrow night too. I agreed to do this for a week. Hopefully after that he will be more confident in doing this by himself. He seems to do well with rules & structure - which is completely normal for kids, we just don't always remember that!! He creates his own if we don't create it - which in this case had turned into him hiding out in the bathroom, swiping his teeth with his toothbrush a couple of times. His toothbrush having basically no toothpaste on it. He refused to do this if someone else was in the bathroom with him. Tonight was a huge turn-around for him.

Sebastian's Star of the Week presentation isn't until Friday but he is doing some every night so that we get it done - and do it in a way that is stress-free & natural. This is also new!

Judah pooped (as mentioned above).
We started the new med, Oxymag 1/2 - 1 tsp 1-2 times a day - we did 1 tsp. Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp. fish oil, no probiotic & no nose drops (preparing for lab). He had 1 dose of Miralax. He had one pill of sleep supplement - Magnesium Citramate 135 mg. He had 1/2 Bethanechol 2 times today.

B-12 shot given.

New Med & Molasses

We will start Oxymag 1/2 - 1 tsp 1-2 times a day (constipation) - started 4/22, 1 tsp at night
We will start Blackstrap Molasses 1/2 - 1 tsp in each almond milk (laxative) - hopefully by 4/23

Monday, April 21, 2014

A Hurricane of Kids!

Sebastian woke up Scott & I repeatedly this morning. After being told over & over to go back to bed Scott finally jumped out of bed & chased him away, hahaha! Of course, Judah & Willow were all snug in our bed.. Judah was next to go. Willow has the luxury of staying, because putting another one back to bed is just too much work. All of the above is not good parenting, it's parenting to SURVIVE.

Tonight was our last parenting class. We discussed time-outs, cool-downs (pre- time-out) & other ways to again, survive parenting. Watching the getting dressed video was hard - a mom doing everything wrong. It was a video of us, essentially. The entire class was having a good laugh, while Scott & I both had the look of "Oh my god..." on our faces. WATCHING it brings out all of the mistakes, ridiculousness & reasons behaviors repeat very clearly.

Our instructor has been a very positive leader, making everyone feel special and heard. She twisted around answers & worked with them, never putting anyone down or telling them "no". You could almost tell she had a special needs kid that she had spent many, many years parenting. Scott asked specific time-out questions regarding Sebastian - she gave us some great advice there.

When I'm relaxed, my memory sort of falls back into place. I felt that today. Must keep that in mind!

Mom, Tim, Erin, all of the kids and myself spent over an hour at the Bounce House today. Judah & Bash were soaked in sweat by the time we left. I tried to make a video of the kids in the hurricane machine - I'm curious to see it! They all had a blast. Willow flew down slides like a "bullet" as Tim described it. Judah dragged me through many bounce houses. I got stuck trying to squeeze between 2 huge inflated rollers. Judah pulled me on one side (counting very clearly & smiling very big), while Sebastian pushed me from the other side. All I could hear was Erin laughing! Judah pulled me through that one TWICE!

Judah's progress hasn't been that awesome today. I think it's the hanging out with new people and a new kid all of sudden. He seems overwhelmed. Mom said he needed alone/quiet time periodically this evening. When we got done with class and went to Mom & Dave's to pick up the kids, it was easy to see that Judah was fully engaged with the other kids & having a blast, they all were! Judah said, "Hi-ya!" like Willow and did karate chops around the kitchen. They were dancing & running in circles! We may have gotten some good photos of the cousin-fest in their new pj's on the couch. Tonight was "cousin party". Olive, Tim & Erin head out tomorrow morning.

Judah had no bowel movement today - which means we should probably do an enema.. and he is already in bed.

Judah had 1 tablespoon (one dose) of his prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, got home late & forgot the fish oil, one probiotic & no nose drops (forgot). He had 2 doses of Benefiber. He started a new sleep supplement - Magnesium Citramate 135 mg. We are out of Bethanechol - none taken today.

Sunday, April 20, 2014

Easter Olive!

Hoppy Easter! The Easter Bunnies were tired this morning.. they did a very last minute candy run last night. The candy was then dispersed amongst the variety of plastic eggs that have survived the last 6 years. Then the Daddy Easter Bunny hid these sugar-filled plastic eggs all over the house while the Mommy Easter bunny put baskets together.

FYI- Candy corn contains egg whites. We weren't aware of this & bought it. It just reminds us even more to read all labels!

Our forgetfulness and lack of organization is truly insane. This morning we left for Mom & Dave's ... to arrive an hour late and then realized we had forgotten the table. We go home, get the table, get back in the car, driving away again.. and we realize we have forgotten the camera.. go home, get camera and back in the car, driving.. I mistakenly ask Sebastian if he had brought his new toy to show everyone.. he had not, he asked to turn around & go get it of course. But the Easter Bunnies were getting frustrated with driving back & forth, so they told Sebastian that his backpack filled with masks & games would be plenty.

We get to Easter lunch over an hour and a half late. Judah takes my hand and pulls me inside the house. He immediately says, "train track!!" & dashes to the box of train track near the door. He starts to play. He did a lot of "train track" playing while we were there. The commotion and amount of people seemed to be too much for him today. When he first joined everyone he made lots of loud, sounds of excitement & big gestures. He wasn't sure what to do or how to act. After quite a while he seemed to get comfortable. He was engaging but didn't get attached to anyone like he usually does. He would play for a while, some with others & some on his own, and then back inside to "train track". Near the end he played a lot outside & some inside with the others. And of course he did not want to leave - he wanted to stay & play trains.

The minute we arrived I went to see Olive, who was sitting on the porch swing with Gramma. She's a china doll. Strawberry-blond hair and crystal blue eyes. She ran around barefoot the entire time we were there. She sang songs to herself while she played. The kids were all excited to see her. Willow approached her & pointed at her, "Olive". As if Olive was still a photograph in front of her, haha. It took Willow a little while before she was herself. She played in the hammock, jumping up and down, laughing, wanting Olive or Sebastian to join her and one time flipped out of it upside-down. She was totally fine. She took another fall in the house & was totally fine as well - never cried either time.

Mom & Tim played some mean badminton! They were really good! I hope the video I made shows that! Sebastian became sad because he was feeling left out. Gramma had a hard time giving up the racket.. the smell of competition was brewing!

Gramma made homemade ice cream. She showed us how to use her ice cream maker, very simple. We had strawberry cake too - amazing dessert.

Sebastian & Papa have a gorgeous little garden growing. It is covered in hazelnut shells. This helps keep the slugs away & of course makes it look very pretty.

Judah, Sebastian & I played cars in the driveway when we got home. Judah didn't even go inside when we got home. We were taking so long to go inside that he decided to grab the huge car ramp and set it up, haha.

Judah showed some amazing progress today. We were near Latte Play and he said, "play, play". We rarely go there - but he remembered it! They do have a really big Lightning Mcqueen car.. he remembers that too I'm sure.

Tonight Daddy asked Judah, "Do you want me to catch you?", giving no gestures or clues. Judah was just sitting in his chair, finishing his dinner. Judah stood up & jumped! And Daddy caught him.

Judah pulled me to the small bonfire Papa was making & said, "Let's go! Fire!" He said, "Cool!" when he saw the fire going. He roasted a marshmallow with me until I asked Scott to take a picture. Ugh! Why did I say that?? Judah hates pictures. Judah took off.

We did a cake & candle-blowing early birthday celebration for Erin. The kids all blew out the candles. At one point two candles were lit and Judah & Olive were blowing. Judah blew out one, and then walked over to Olive's candle & gently blew it out for her, haha.

Scott brought the potty upstairs because Judah was looking uncomfortable. The minute Judah saw the potty he pulled down his pants & diaper & followed Scott to the bathroom! haha. He didn't go though, which didn't make sense.. but at least the actions were there! I had to use the sand timer for the other potty experience that happened at Gramma/Papa's. He got mad when the time was up, and I had to lift him until we got to the bathroom door, after that he was fine.

Judah enjoyed playing some golf today at Gramma/Papa's - he was good at hitting the little plastic golf ball!

I tried more "my turn, your turn" with Judah today. We did this at Gramma/Papa's. He was surprisingly good at trading trains with me. We did his turn with Thomas and my turn with Henry, and vice-versa, over & over.  He was able to do it repeatedly, probably about 7 or 8 times in a row! I think turn-taking with Mommy is different than turn-taking with others though. And trading is a bit easier than taking turns with one toy. So it's hard to know if I am doing this class homework with accuracy. But he definitely excelled at this task - I know it wasn't easy for him. And a challenge is always good, as is practice.

We passed by McDonald's and he said, "I want chips." more times than I could count!

Judah had no bowel movements today. He had 1 tablespoon (one dose) of the doctor prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp fish oil, one probiotic & no nose drops (forgot). He had 2 doses of Miralax & one dose of Benefiber. He took the sleep supplement, 5 - HTP (100 milligrams). He also took 1/2 a pill of Bethanechol in the morn, & the other half in the evening.

B-12 shot will be tonight. His sleep med didn't seem to do much tonight - he was pretty hyper.

Saturday, April 19, 2014

Learning Styles

Today I took a class on learning styles. There really was no focus on just a specific population, even though the class was supposed to be geared towards special needs kids. The focus fell on everyone because supposedly there are only a handful of learning styles & we all fall into one of them and spill over a little into the others (if we fall into the others at all).

We were asked to pick a drawing that represented us best. We had a beach ball, a clipboard, a microscope & a puppy to choose from.

I'm a clipboard, I think? I like lists (even though I rarely follow through with them). I like deadlines (otherwise I would never get it done). I like to feel in control of my life. I love to be organized!! Unfortunately I've been climbing up a growing mountain of chaos towards the goal of organization for over 3 decades. Only small parts of my life seem to stay organized for over 3 months. I like schedules (although I cannot keep them if I have to create & do them on my own). I like writing in general.. you can write on a clipboard. I'm detail oriented (sometimes to the point of making myself crazy!!)

But then I definitely have the beach ball side (the fun side). This involves spontaneity, creativity, multi-tasking & energetic qualities.

Scott's the microscope. What the microscope people wrote as their qualities and needs described him to a "t". Even the way the 4 groups stood was interesting - the puppies huddled close together, the microscopes stood evenly apart, the beach balls were scattered & the clipboards had their arms crossed, somewhat guarded & defensive. She said these groups end up standing like this in nearly all of her classes.

I learned that all kids need to know what's coming. She talked about why this is important & ways to do this - she was basically saying what is CONSTANTLY reiterated in the world of autism. And I told her that. There were only a few other people in the class with autistic children. It was interesting to me personally because I didn't realize my other 2 kids could be helped so much by this. I told her that as well.

The minute I mentioned Judah and his diagnosis and characteristics, everyone in the room suddenly looked at me differently. People approached me. One woman had a post-it note with a list of potty-training ideas & the name of a book. Two people recommended elementary schools that they knew had good special needs classes. Some people asked me about Judah & others commented on how hard it must be because his language is so limited. It was weird.

I talked too much. By the 2nd project the instructor told me, "I already know a lot about you..", haha. That was when we had to draw or write 3 things that we do well or really enjoy on a card and place it in front of us for everyone to see. She read off each person's three items & asked them a couple of questions about them - and then gave us each a sequence of letters to write on the back of our card.
I was comfortable with the personal, open conversation between the instructor and I in front of a lot of people (it happened often). I've become a new person in this way. I was able to see the old me (how I typically would have been in this situation) in someone else there.. that was interesting.

These letters that she asked us to write represented multiple intelligences - verbal/linguistic, logical/mathematical, visual/spatial, intrapersonal, interpersonal, naturalist, musical/rhythmic, & bodily/kinesthetic.

She gave me letters that stood for intrapersonal, bodily/kinesthetic & verbal/linguistic. Bodily/kinesthetic? I don't see it, but that's definitely Judah! This was to show us the ways that we learn and how different all of these paths to learning are- if your kid wants to go home & sing his homework, let him. He will learn it that way. She advised us to mention these things to their teachers & also to mention anything going on in their life that may detour their learning. I do the latter pretty much every single time I drop Judah at class.

Another big point was that we teach the way that we learn - which isn't going to help our kid if they don't learn that way! Teach their way. Again, just like with autism. You enter their world, find what they love & teach through that. She mentioned that giving kids choices ensures that they have a personal interest in the topic- again, autism.

I gained some ideas to use with the kids - taking pictures to help them remember! She suggested putting a picture on their backpack to help them to remember to bring something or on the back of their bedroom door, etc. Allow kids to rearrange their rooms in way that fits them. Hmmmm.. not sure about that one! haha. The freedom to rearrange isn't really there for them as they hardly have any space - but this concept could be used in other areas/ways. Focus on effort, not grades!

Scott did lots of shopping today - one trip with Bash & the second with Willow & Judah. Sebastian and I got some together time, that doesn't happen often. Reminding him of that instantly helped him decide that he would stay. :)

We are waiting to hear back from lady who is interested in helping Judah.

Judah started using his Cars e-book on his Leap Frog Ultra today - he is learning it much quicker than I thought he would! That touch screen helps so much! He was so excited when any of us approached him and saw what he could do! He would run away with a big smile on his face, throw his hands in the air and then come right back! And he shared his Leap Frog too! So now we know that the e-books are something he can do & develop skills from. Thomas will be next. ;)

Judah was saying "O-tay!" consistently today!!

The kids had lunch with Gramma & Papa and ran the Lancaster mall afterwards. Then Gramma & Papa went home to prepare for Tim & Erin's arrival & Easter lunch.

Judah pooped once. He had 1 tablespoon (one dose) of the doctor prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp fish oil, one probiotic & we forgot the nose drops. He had 2 doses of Miralax . He took the sleep supplement, 5 - HTP (100 milligrams). He also took 1/2 a pill of Bethanechol in the morn, & the other half in the evening.


Friday, April 18, 2014


Today we drove ALMOST to Portland for Judah's eye appointment at OHSU. We landed in a traffic jam, so I called them to tell them we would be late. We are now rescheduled to MAY 30TH.

Mom had Sebastian & Willow. They got haircuts from Michelle & Subway for lunch. Willow brushed the edge of her hair with the palm of her hand and said, "Gotta haircut Mommy! Got haircut Mommy!" She calls Scott by his name now, regularly. He attempted to intervene, correcting her with "Daddy" when this first began calling him "Scott". It seems he has given up. But he still fights to smash the "baby butt" and "chicken baby butt" coming out of Sebastian & Willow's mouth between giggles.

I got to go home & spend lots of fun one-on-one time with Judah after our adventure to ALMOST Portland. Unfortunately he was constipated a lot today, in pain quite frequently. Tonight we did an enema.. a big, hard poop was born not too long after. It feels likely that we just jogged by the route to horrible pain he was traveling not long ago. We didn't stop to say hello. The enema was a disaster at first - an explosion of sorts.. my eye was burning.. I won't go into any specifics but it was probably one of the yuckiest things that has ever happened to me/on me. Probably one of the funniest as well.

Playdate at a friend's house. Her son is Judah's age, with Judah's diagnosis & very similar challenges to Judah. Her daughter is Willow's age - those girls got along very sweetly, taking turns on the horse & the trampoline, & tossing balls back & forth. Delicious food was made. My head was filled with ideas, inspiration and information - all very much needed!! Thank you! She has worked unbelievably hard to keep her kids happy & healthy.. and doesn't seem intimidated by all of the complexities, the scary proceedings & the suffocating amount of information & ideas to sort through! She is determined to find the path for her children that fits, like a glove.

Played Frisbee with Willow & Bash in the yard. Judah inside constipated - Daddy helping. Willow really loves throwing a Frisbee, ball, football, etc. back & forth with someone. She thinks it is hysterical. "Ready? Ready Mommy?", big smile & throw!!! Never landing anywhere near me. :) Sebastian rode his plasma car, accelerating through & around obstacles, never once hitting the car or me & Willow.. which is all I really care about anymore at this point. :) He's also riding his Spiderman bike, with no chain.

Willow is changing so much!! The past two days I have seen tremendous change in her, with each day. Today she looked even bigger & is suddenly talking in sentences, figuring out creative ways to say & do things, etc. She has such a flowing, open, funny personality! At this spot right now I can also see clearly all of the little phrases, words & actions that she has secretly picked up from us. She walked into the living room when Gramma was here, waving her arms high in the air singing, "Ahhhhhhh.. woooaah woooahh.." then quietly wandered on.

We contacted lab about Judah's sample that we are supposed to get since he was constipated today. They said Miralax could not be given to get an accurate lab and he could not poop in a diaper because diaper = contamination. My friend said that her son went through this as well. She just let him run around naked.. it took 2 days of this before they finally caught a poop.

Emailed Dr. Green to see what we could do about the lab situation.

Judah had 1 tablespoon (one dose) of the doctor prescribed L-carnitine. He had 1 dose of Docusate Sodium (missed one), 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, no time for fish oil and no probiotic or nose drops (waiting to do lab). He had 2 doses of Miralax, some Benefiber and some organic fiber that my friend shared with us. He took the sleep supplement, 5 - HTP (100 milligrams) - he took two. He also took 1 Bethanechol.


Thursday, April 17, 2014

Chasing Chaos in the Rain

Definitely more speech with Judah. He seems to be enjoying saying the "I want" sentences and was very proud to hand me my phone today and say, "all done!" with a smile on his little face. James the train was on the floor. "I want taaa" Even though he could reach him I think he was just trying to show me that he could do other sentences! I told him "all done" and set the Angry Bird down after we had been using it for Star Program work. He smiled & said, "all done". Star Program work went much better than usual. I decided to do it after his sleep med while he was getting comfortable in his bed. I went slowly. When I assisted him with 'hands down' I gave him his reward - the Angry Bird. He threw it across the room shouting, "Hi-yah!!" This was motivation to do this again. I said, "Ready?" and he would say, "Ready!" He only did the hands down twice on his own, but he was enjoying it. Twice is a lot more than usual! I cleaned his room while he rested in bed. Sebastian came in later, I told them goodnight and left. They stayed in bed for quite a while! I had time to clean Willow's room. Then I went to the bathroom and the dog started whimpering outside of the bathroom door. Judah got up right after that, then Sebastian. Scott put them back down & I took over the job of getting Willow down, just like we always do. I think we can see a few parts of tonight's routine that could work, but still not completely right yet.

The support group meeting was kind of surreal tonight. A handful of parents & 2 grandparents talking about all of the specific endeavors currently going on in our life. ALL of our current adventures & obstacles were brought up. Insurance coverage, Dr. Greene, Mickey at Western Oregon (???), constipation, poop chart, writing down daily progress, GI specialist, Super Bounce, questioning what will happen this summer (we chose to be our focus for next meeting), FB autism groups (they have created one!!), "i want" sentences, social stories (I'm going to make at least one tonight).. just lots of stuff! But it was lots of talking, I could barely get a word in, so I just wrote in my notebook mostly.. which will help a lot.

Willow is repeating Sebastian's "baby butt" comment that they both think is so funny. During the car ride home she was sitting behind Scott and says, "Daddy.. Daddy!" Scott says, "Yes Willow" and she yells, "Baby butt!!!" It's so hard not to laugh, I can't do it. Last night she yelled it and threw her hands in the air as if she was proclaiming "baby butt" to the world! She's pretty hysterical.. and of course her bff Bastian is constantly teaching her & egging her on.

Rainy day so we played in the garage. Apparently the lady at Western Oregon that we have been in touch with recently found a student for a guy in our class & support group. She was only able to find one apparently, but our friend says it is working out well! I was surprised how many people in our group pay for their kids to be in day care just to get the extra socialization. They were talking about which day cares were good with special needs children. Also at the meeting, we picked up a dentist name that may work for Judah, and tips on cutting his hair!

The kids played in the childcare rooms during the meeting. Sebastian was almost in tears at first, so he joined us in the parent meeting. Halfway through our meeting he went to play & had fun. Judah pushed me out of the room when we first got to the childcare area, saying "Bye!!!!"

Judah was trying hard to poop today, it never happened. I stopped the Miralax for the lab, but may fore go that rule tomorrow. We can't do the lab until he poops! And doing a sample after an enema is probably not a good idea... and we don't want to do an enema anyway. And it's pretty crucial that he have regular bowel movements. The probiotic helps with that - but that has been stopped due to lab preparation as well. He wasn't great about going to the potty when I asked, but the timer helped! He was in diaper all day because he needed to poop. I made sure that he washed his hands after every toileting experience.. since they wrote that he didn't do that one day at school. That's always been an easy routine for him at school, we need to keep it consistent at home!

Speaking of school...
Judah likes to run to his classroom & get far ahead of Willow & I. I caught up to him at the ramp that leads directly to his classroom and was greeted by today's substitute teacher (his real teacher hasn't been there in weeks!). She told me her name (Laura) & then let me know that they were going to send him back home because the staff had not been trained on his epi-pen. WHAT! I informed her that he was able to go to class on Tuesday. Then I looked at her and said, "He is going to be upset". I told him the news and tried to get him to head towards the van, instant tantrum. It's raining, Judah throws himself on the sidewalk, the substitute quickly walks away (thank you so much) and I look over to see Willow wandering off towards the parking lot. Earlier she had tried to stand behind a van that was getting ready to back out! I look in the other direction to see aides from his classroom waiting at the bus, watching us. I ran to Willow, leaving Judah, who began screaming, "Mommy!!! Mommy!!" Staff continued to watch from a safe distance. I put Willow in the van, but forgot to lock it. I ran to Judah, who then began running towards the classroom..  an aid opened the classroom door wide & welcomed him in! I yelled at her, "He can't go in there.. He CANNOT go in there!" running after him. So now the situation is even worse - he's in the damn classroom. He ran through the classroom, flying past the aids. I tried to get him but was stopped by an aid waving a cordless phone in my face.. because apparently now was a great time for a phone conversation??? The school nurse was on the line. I told her.. "I can't talk right now. Unless you are going to say that he can stay, otherwise I need to go." She kept talking!! I ran out in the rain with their phone & locked Willow in the van. The nurse wanted to know what the epi-pen was for and she finally agreed to let him stay. I made sure the aid was feeding him something that was egg, gluten and casein free & showed another aid his extra pants (he was soaked from the rain). She never changed him. His pants were wet all day.

I got back to the van & just cried. I felt like I couldn't keep my kids safe when Willow ran away and I had to leave Judah. I didn't handle the situation with the aids very well. I was a wreck. I called Scott. He came to meet us to pick up Judah later. He wants to file a complaint with the school.

I talk to the nurse on the phone after I get home. She had only found out about his epi-pen this morning. I had informed the school a week ago - 3 different people were on that email & none of them had written back. On Tuesday he went to class with no epi-pen, Shelley was there for 2 seconds & she said it was fine. I told the nurse all of this. I told her they have known about his egg allergy all year. I answered a bunch of questions for the nurse as she filled out his plan of action. She told me her name multiple times for some reason.. ?

Shelley (his teacher MIA) calls later to reschedule the 6 month review. She had forgotten to send us the new date and now they were changing it again due to someones schedule. We set up a new day - the 24th. The OT won't be able to make it, but that's fine with me.. she just makes me confused. I told Shelley about this morning. She said the sub should never have told us to go home and that they should have called her back (she had called with the epi-pen info this morning). She said he should have gone to class with no epi-pen just like he has done all year long. That would be to cover their ass, but obviously not a care given to Judah's life on Earth.

Judah had 1 tablespoon (one dose) of the doctor prescribed L-carnitine. He had 2 doses of Docusate Sodium, 2000 i.u. vitamin d, three tablets 125 mg folinic acid with b-12, 1 tsp fish oil and no probiotic or nose drops (waiting to do lab). He had no Miralax . He took the sleep supplement, 5 - HTP (100 milligrams) - he took two tonight since last night didn't seem to be superbly effective. He also took 1/2 a pill of Bethanechol in the morn, & the other half in the evening.