Sunday, August 31, 2014

Peeing Standing Up!

We had an aide here all day today. She took Judah to Riverfront park & texted me pictures of him smiling right at the camera! Holy bizarro Batman! He runs from cameras. If I tilt my phone a bit, where there may be the slightest inkling of possibility that he is about to get his picture taken, he turns around & walks away. And our aide is sending me pictures of him smiling at the camera, close-ups even?! Immediately upon seeing them, I sent them to everyone in the family! She thought that was pretty funny. He also allowed her to hang out in the bathroom while he bathed on Friday, and it was a really long bath! He never lets me do that. He points at the door and says, "That way!!" if I try to come in. If I don't leave right away he will say something more polite like, "Go please." in his sweet little voice. He must really like this lady!!

She told him to make this face. :)
Riding in the wagon on the carousel.

Oh! She said he went to the potty like a "big boy" in the park bathroom. He peed standing up! She didn't ask him to, he just did it! I just mentioned this to Scott & he said, "I just showed him that yesterday!" Apparently Judah had walked in on Scott in the bathroom. Judah had a confused look on his face when he saw his Daddy standing in front of the potty. So Scott explained to him that he could go potty standing up if he wanted to. Obviously Judah had listened, understood & tried it out the next day! And in a public bathroom (scary, not the comfort of home) with an aide (not family & she's only worked with him a few times)! That's pretty huge. INCREDIBLY HUGE. Go Judah!!!
Sebastian & I spent hours at Orchard Heights park today. It's really close to us. There are lots of trails. He biked while I followed. We found numerous fruit-bearing trees. He picked a small apple & a plum to take home. They are on the kitchen windowsill now, where he hopes they will ripen. He found a large, healthy looking leaf to take home for his "experiment box" too.

Willow & I made up a song tonight - I'll try to get that posted soon.

Willow went to the store with Daddy. While they were shopping, Daddy set down his Frappuccino (a highly sugared down large cup of caffeine) as he was talking to a deli worker. When he turned back around, Willow had downed his entire drink & was hanging off the grocery cart with her head upside-down yelling "Look at me Daddy!! Daddy! Look at me!!!" Pics below.

The rest of this entry will be through pictures. We took a lot at the park today. Sebastian, who is SEVEN, took the picture of me.



Judah had a large, mushy, messy poop.
Judah missed these meds - fish oil, beta, skin rash ointment (not needed), iron-up, folinic acid in shot, didn't do eyedrops (not needed), powder b-6, miralax, molasses, oxy-mag.

Saturday, August 30, 2014

Frozen At The Park

Joan Rivers is on life-support.. or at least that's what the headlines say.

Tonight we went to "Free Family Friday" at Riverfront park. They were playing Frozen, the current kid movie craze via Disney. Personally I think kids just needed a Disney movie to be in love with, it's been a while. It was time. That's my theory anyway. I saw Frozen in the theater with Sebastian (Pa Rock was here to babysit). That was the first time Sebastian & I had ever been to a movie together. Scott has taken him to all of his movies in the past. I remember walking out of the theater thinking that what we had just watched was Disney's best attempt at throwing together a movie with enough kid humor & fun characters for kids to latch onto. It was different, that was good, but not really all that interesting. It had an ice queen and a talking snowman (infatuated with the idea of heat but didn't understand that it would melt him) & singing, love expert trolls. But I just didn't think it awesome.. nowhere near Cars awesome, but maybe more along the lines of Pocahantes awesome?

It was a really fun experience watching Frozen on a huge theater screen at the park. Judah was beyond ecstatic. I was worried he would be overstimulated - which he was a bit, but never out of control. Willow, however, had to sit 12 feet away from us throughout most of the movie. She refused to relax with us on the Valentine's day themed plastic picnic table cover. It's smothered in hearts - but it's vinyl so you can wipe away spills.. where as the blanket your grandma made by hand is really the worst thing in the world to lay on the grass when you are relaxing with your kids, on the ground, eating.. after they have just played in the dirt & wet grass. I feel sort of genius when I hang out with my kids at the park on our vinyl blanket of hearts. I'm sure it makes me look lazy, tasteless, colorblind & unaware that it isn't February... but at least my grandma blankets are clean and thus so is my conscious.

Judah & Willow got a bit crazy at the movie - Judah began log rolling down the small hill we were sitting on, crashing into a couple of people along the way. Willow did whatever she could that she knew she wasn't supposed to do. When she ran out of ideas, she just started doing things solely to gain our attention. Once we were settled in our spot, she immediately wanted to go play on the playground. Not long after that she was on hands & knees barking (she does this a lot - I call her "Willowdog"). She was completely cool about it, going up to people on the lawn and barking.. then casually moving along on her hands & knees. My family is not weird. We are just blazing with creativity. So what if my daughter thinks she's a dog...

During the start of the movie I was nervous that we were going to have to take either Willow or Judah home because they were both sort of all over the place & Judah was energized to no end. This was an unbelievably exciting event for him. He LOVES the Frozen soundtrack & watches the movie at Gramma's. The happy run he does (where his legs dance around as he runs), was the happiest I had ever seen it as we headed to find a spot on the grass & he slowly began to realize what was about to happen. Bringing two cars ended up being completely unnecessary- we made it through the entire movie, all 5 of us, and had a really good time.

The coolest part about the movie was watching the 3 girls that sang along with, "Let it Go". Little girl voices singing is always cute, but these girls even sang well! Not only did they sing, but they acted out the movie - doing all the same moves that the main character was doing right on cue, absolutely loving it- as if they were on stage. That was definitely the coolest part of the movie. Everyone within view of these 3 little girls applauded them after the song! Watching Frozen 500 times at home finally paid off for them.

Scott drove for an hour to get to a compound pharmacy in Wilsonville this morning. They had filled one of Judah's prescriptions that we have been waiting on for some time. They are the closest pharmacy that can fill it. They left a message yesterday morning, letting us know it was ready. I didn't hear the message until after they had closed. I immediately called & left a message, pleading for them to make an exception for us, saying that if there was any way we could get it before their next working day (Tuesday), that it would be so helpful.. that he really needed the medication, etc. And it worked! She called this morning (the day after I left the message) and said she would be there for a couple of hours & would let us in to get the med. Some people are just awesome. Score one for humanity.

I took Judah to speech. I talked with his speech therapist about writing a letter to disability recommending a crash pad for Judah to help him progress. She wasn't sure if she could do that since she isn't O.T. If not, I will ask his school O.T. I talked with Judah's speech therapist for quite a while. She mentioned that she was signing colors to him & also that she could tell that he recognizes the color green (which I have suspected for some time). I told her about our sign language routine, our signing staff and our signing supply of videos, flashcards & books. She was pretty excited about that. She told me about a website that she sometimes uses with Judah. She said that the more modes of communication we can give him the better. It gives him even more understanding of language; what it means, what it looks like, how it feels, how to put sentences & phrases together, etc. It also gives him more opportunities to communicate - and more opportunities to see & know how powerful communication is. She's got some super awesome speech therapy knowledge - worlds beyond what his previous therapists have had.

The app she recommended is called, "My First AAC". It's an Apple app, of course. I'm so incredibly thankful that we have some Apple around here now!!

Judah had one gigantic poop today.

Meds Judah missed - fish oil, nebulizer, Beta, folinic acid (shot), ironUP, no powder b-6, got one Miralax.

Friday, August 29, 2014

Judah's First Good Haircut Experience

So today wasn't AS exciting for Judah, but still, his major progress was by no means out the door. He was still repeating, responding, even being funny with what he was saying!

Judah got a hair cut today. I held my breath as we walked into the salon. I knew the lady who was about to cut his hair - very young, fun, energetic & knew autism. Her brother is 17 and autistic. I had learned this when she cut my hair. She had told me that she would like to try giving Judah a hair cut. His hair was pretty out of control at this point, tangled even. The last time he went for a hair cut Scott said he didn't even make it to the chair. Today he climbed up in the chair & got comfortable!! I handed him the I-Pad, he went through the pages of apps until he found "Angry Birds GO!" (he can say "I want Angry Birds Go" now by the way). He played it through his entire haircut, as clumps of his curls landed on the I-Pad. I blew them away. I had told her to cut it as short as possible (because haircuts have never been a good experience for him and I wanted him to have as long as possible between haircuts). Boy did she take my instructions literally! She asked if she could use the buzzer. I told her it was a bad idea. She convinced me telling me how quiet it was and showing Judah. I said, "Well maybe you can try it at the end." So she chopped off a bunch of his hair, but it was still quite shaggy on top. She got out the buzzer & started on the back of his neck. I wondered why she wasn't waiting until she was done with the haircut. Then suddenly I saw that the buzzer was moving from the back of his neck up the back of his head! The buzzer ended this travel at the hairline on his forehead!! I was seriously worried that she was about to bald my son! But she didn't. His hair is about half an inch long now, all around. He looks very baby like, very young. He looks much different & very adorable, like always. When he looked in the mirror and saw that he had no hair left he giggled! He thought it was funny! He thought it was funny when I chopped my hair off too. I was so relieved he wasn't upset. But he doesn't like it when you pet his head - which is so tempting!!

Our aide was with us at the salon. Apparently Willow & Sebastian were running in circles. I could hear Willow saying, "My pants are falling down! My pants are falling down!" Then she would walk in to see me, her shorts around her ankles. "Mom! My pants fell down!" She started calling me "Mom" today. I like it!!

Anyway, Judah did PHENOMENAL during his haircut. He sat there & played on the I-Pad the entire time. Near the end the falling hairs were beginning to tickle his neck. He didn't like that & tried to brush them away. He didn't like her trying to buzz around his ears.. but she was able to clip the hair by his ears with scissors. It was unreal how much his meltdown haircut behavior had totally flipped. We're talking 180! But it was as to be expected I suppose. He has suddenly burst into so many new levels of progress. Today we hit another altitude, haircuts! And not to downplay the hairdresser, but I don't think he would have had a problem with any other hairdresser. He wasn't even paying attention to her. And she only charged 10 bucks!! Didn't see that one coming!

It's kind of ironic, the lady who gave me my first good haircut was the same lady that Judah had his first good haircut experience with!

Sebastian had sort of a bad day. I caught him rolling Judah's mini-trampoline across the driveway - which ripped up the sides a bit. Man, that made me mad. I took away his outside time for the rest of the day (there were only a few hours of daytime left). He was constantly teasing Willow today, throwing her car seat strap at her while I drove, it didn't matter how many times I told him to stop. At the end of the day, he let me know that he was going to move. He even wrote me a note telling me this - and at the bottom was a drawing of him driving off in a van, with a smile on his face! But apparently he isn't moving until Sunday - because tomorrow is Gramma/Papa day, haha.

Sebastian will officially be a 1st grader on WEDNESDAY!! Oh my goodness. That news is so beyond my scope of belief.

Our friend told Scott today that he is getting rid of his caregiver. This is the same caregiver that we fired recently. Ya know, he said she didn't even use us as a reference! haha. That would have been great though - if our friend had called us to ask about her before he hired her. He would have gotten a very "no holds barred "reference opinion! Oh well, maybe next time. ;) He is contacting the same agency we contacted.

Sebastian's doctor said his eye is healing - we'll just continue with the eye drops through tomorrow and he should be good to go! Willow kept saying "My turn!" as we drove to the doctor. She repeated this all the way through the end of the doctor appointment! As soon as the appointment was over she went to the scale, saying, "My turn!!", sat down on the floor like her brother had & took off her shoes & socks. Sebastian was telling her that she wasn't the one in pain, haha. She stood on the scale. I pretended to weigh her, but it wasn't good enough. She knew what was up. Eventually I had to carry her out of there. Her next doctor appointment will likely involve a shot - that will cure the doctor visit anticipation & excitement for sure! Reality sucks. Speaking of which, we got the ER bill today. Reality suddenly hit an all new sucking high! It sucked us right down a drainpipe into a sewer filled with black water & gigantic RATS about to feast on our bodily organs. Or at least that's what it felt like. That bill should have come with a good, solid punch in the face. Holy crap that was expensive. I think the paper itself weighed 5 pounds!! They sure do charge a lot for taking out a body organ. Actually this was the dr. bill, the bill for the ER is still yet to come!!!!!!!!!!!!

Scott & I were able to do Judah's massage together tonight. That was really nice. Of course I had to give Willow a massage immediately following, haha. Sebastian would have requested one too, but he was too busy making plans to move out.

Judah's folinic acid came today! The postman delivered it right to the door, so there was absolutely no opportunity for it to sit in our mailbox and become even warmer than lukewarm. That time we had no idea it was there & thus may have not gotten to it on the same day it arrived, who knows. So I opened the package the postman gave me, pulled out a room temperature ice pack and a tiny bottle wrapped in foil (it is supposed to be away from light & refrigerated at all times). Yup, warm bottle. I had the aide feel to reassure me that I wasn't crazy. Scott called the dr's office immediately - they were closed. He left a message and tried to call again a couple of times throughout the day. Last time they refused us a refund - this stuff isn't cheap!!! But they did say last time that if it hasn't been more than a day it should be fine. How would we possibly know that?! It looks like it was mailed yesterday.. but when was it actually put in the mail.. man, I was so aggravated when I opened that package. He needs this supplement & we paid extra to have it delivered certified. The other supplement he needs is also in - but I didn't hear the voicemail until after they had closed. We will have to drive to Wilsonville for that one. It's the closest compound pharmacy that can fill this particular supplement. It too must be refrigerated, so at least we will have that guaranteed (by ourselves!) with this one.

Also!!!!!!!! Someone posted a link to this gymnastics place in the autism group I'm a part of. It's in Beaverton (52 min drive). Classes are only during the week. I'm wondering if an aide can take him - they get reimbursed for mileage. If not I would make the drive. The cost to participate is not insane - which you would assume it would be because these places are not common around here. It's especially for kids on the spectrum... educated instructors, small groups.. We have been looking for a gymnastics class for Judah for a LONG time. He needs the physical output - every single therapist he's been to agrees with this or recommends this, his teachers do as well. Being physical & active is a sensory need for him - it makes him feel good. So I'm hoping we can do this class, or at least try it to see how he does.

Prices - 60 min private lessons $150 per month Small groups $115 / month Large groups (6 kids is max) $95/month

here are a couple of links.....

Judah had no bms.

Judah did not have molasses, oxy-mag, beta, vitamin b-6 powder, coconut butter, eye drops, 2nd bethanecol, Iron up, miralax, fish oil or nebulizer treatment.

Thursday, August 28, 2014

Judah Blast Off! (and Wooden Bells)

Judah had a PHENOMENAL morning. Scott said, "Come on Judah!" after Judah climbed into our bed early this morning. Scott was taking him to the bathroom. Judah's response? "Coming Daddy!"

I just heard his aide say, "Judah, would you like to go outside?" His response, "Right now!"

This morning he said "Cars".. "I want Cars".. "Cars please" (all pretty common for him at this point). I turned on Cars and at the menu he told me, "Maaer and goooo". He wanted to watch Mater & the Ghostlight (an option on the menu). He has NEVER been able to tell me that before. He has never attempted to (that I have realized anyway). Usually he gets frustrated when I start Cars and he wants Mater.. and I do 20 other things before I try Mater & he is finally happy (and exhausted, but still very happy).

His aide took him to the park this morning. She had forgotten to get a pull-up on him. When I reminded her she decided to try the outing with him in underwear. They weren't home until 1 or 1:30. He had pottied in public and had no accidents that entire time! She said he was talking a LOT that entire time too. His progress that we had seen from the minute he woke up had held up through the afternoon. It's about 3:42 now... I'm so excited to see how the rest of the day goes!!!!

I'm off to my doctor follow-up appointment. I just wanted to write in here that Judah has basically been talking - speaking to the point of us being able to understand what he is saying probably 85% - 90% percent of the time, which is a huge leap!!!

I took a Spring Forest Qigong class this morning. I was the only person (besides the instructor) that showed. It was really nice, very enlightening & relaxing.

I sat for close to an hour in the waiting room at the doctor's office. They finally called me in. I chatted with the doctor for 5 minutes, thanked him for saving me.. he says, "Oh, it was my pleasure!". He said I can take baths now. The nurses had told me "Absolutely no baths!" as I left the hospital. The doctor told me today, "Oh you could have taken a bath the day you got home!" Do you know how difficult it is to shave your legs in the shower???! Damn nurses, but they did drain the disgusting tube sticking out of my stomach every day while I was there and always made sure I was feeling okay, so I will quickly forgive them. Man. He said no lifting for another 4 weeks. He asks patients to avoid lifting for at least 6 weeks after surgery.

I told the doctor about the sound that's been coming from my stomach ever since I had surgery. Every day I hear what sounds like wooden bells coming from my stomach. Wooden bells is really the best way to describe this sound. It sounds exactly like someone sliding a mallet up a row of wooden bells. This just started after my surgery. It happens throughout the day, every day. He told me, "Man, I forgot to bring my wooden bells today!" (so I could play for him what it sounded like, haha funny guy) Later he mentions that they sometimes catch other things going on while they are performing surgery.. like cancer, endometriosis, wooden bells (haha), etc. I asked him if they had seen anything  during my surgery that I should be concerned about. He replies, "Like?..." And I reply to him, "Like...". Apparently it was a long pause, because from the look on his face, I could see that he thought I was mustering up the courage to ask him if he had seen wooden bells in my stomach. He had that look of, "Seriously???" on his face. He reassures me that my insides looked just fine & tries to get me to see the positive side of having a melodic tummy.. saying, "Maybe you could sell tickets to your belly orchestra! Or maybe you could showcase your melodic stomach sounds on tv!" I'm sure I just gave him a great story to share with his colleagues after work. You're welcome doc.

Did Judah's eye drop this morning. Did Sebastian's eye drop this morning. Grandma did the second one.. he'll get one more from her & one more from us today. Daddy did the last one.

The rest of the day for Judah was just like the morning. While Molly was at the Dr. we played outside with the aide. Many two and three word sentences. "Daddy chase me". "Daddy help me". He continued to follow directions inside as well as communicate to me what he needed. "Judah angry birds Go" (a game on my phone), Later he got the dvd from the player and brought it to me and said. "Watch Cars Please". I continued to have him in underwear and he didn't have any accidents either.

Judah had one large poop.
Meds Judah did not have: oxymag, molasses, beta, coconut butter, 2nd bethanecol, powder b-6, fish oil, nebulizer treatment.

Dr. Green rescheduled appt. to Sept 16 at 1:30.

Judah did not have his shot.
Judah had 1 dose of Miralax.


Wednesday, August 27, 2014

Sebastian's Scratched Cornea & Homemade Play-doh!

I took Willow & Sebastian to the Discovery Center today for a little over an hour, basically to give the aide more one-on-one time with Judah. We got back home just in time for Judah's massage, which went really well. The aide told our massage trainer, "I haven't seen him make that much eye contact since I've been here!!" He was sucking my finger & playing with my hair. He hugged the trainer as soon as we were done. Then he hugged me.

The aide chased Judah around this morning, trying different ways to get him to talk. She didn't give up. She lifted him into the air & jumped with him, which always helps. I gave her some ideas other than "the notebook" (the big folder of activities that I created for the aides to use with Judah). She got him going pretty quick though, right after she had just told me that he didn't want to talk no matter what she did. But point is, she didn't give up. And he said more today than he likely ever has. He made eye contact, responded to his siblings a couple of times!?!?!!, talked in sentences some.. "Daddy, Let's go!!!" (throwing his arm into the air as he marched into the building where the doctor's office was). The aide said, "You're a goofball!" and he said, "Yeah" and smiled as she pushed him on the swing. She pushed all 3 of them on the swings at the same time (she does this sometimes). She took pictures because I was on the phone (on hold for nearly 20 minutes with Sebastian's doctor's office!!). She took pictures when they all 3 went down the slide together too. She knew I wanted the swing picture because I had just mentioned it to her yesterday when she was pushing them all at the same time & I didn't have my phone or camera with me.

The aide taught the kids how to make Play-doh. Judah was only interested when he saw the finished product. Then he ran to the kitchen to check it out!! 2 cups flour, 1 cup salt, 1 cup water & some vegetable oil for texture. It turned out really well!! The kids all played at the table with the Play-doh. I printed up some empty faces & bodies that I had found online, quickly laminated them & handed them to the kids to use. They put eyes on, smiles on, etc. Willow put dots of Play-doh all over one of the bodies, telling me that it was his pajamas, haha. When I put eyes on the body she had, she said, "He can't see!!"

Last night I was laying in bed with Willow. She was moving her hands in the air. I asked her what she was doing & she said that she was building a snowman. She continued building. Then I put my hands in the air, building my own snowman. She looked over at me and said, "What are you doing?" hahaaa

When I give Willow toast with jelly it is "piece of jelly" to her. Today I gave her a peanut butter & jelly sandwich. Sebastian moved her plate over. "Bastian moved my piece of jelly!!" I love it. She probably heard "piece of toast with jelly" at some point and a couple of the words fell out - that's my guess. Her hair is her "haircut". Don't mess up my haircut! Don't touch my haircut! Her fingers are still her "niggas".

Sebastian cut the cornea of his eye somehow while making the Play-doh. Maybe salt got in his eye & he rubbed it?? We went to the doctor about 4 hours later when I realized that the skin around his eye had gone from light pink, to red, to purplish in 4 hours. When it was Sebastian's turn he went to the scale, took his shoes off & the lady asked him how he hurt his eye. "Well, it all started when I stepped on the ice floor.." It was so funny. Everything he did at that visit was funny. I asked him which doctor he liked better.. his doctor or Judah's doctor. He said very thoughtfully to me, "Well, I don't really like any of them." hahaa Which would make sense for a kid to say!!

The doctor needed to brush the corner of Sebastian's eye with iodine and tilt his head a bit so it would go into his eye. Holy hell. Sebastian freaked out every minute of this appointment, from his ears being checked to the doctor shining his light into his eyes. He was almost hysterical (not funny hysterical). Then the iodine, just the MENTIONING of the iodine and he is crying & telling the doctor that he was scared & didn't want it. He freaked out so much that the doctor couldn't even get the iodine close to his face. Eventually the doctor left the room so I could try & talk Sebastian down (Which I actually did a decent job of! Usually Scott does that job because he's better at it.).

The doctor came back in.. At this point I had promised Sebastian 2 stars on his chart, that he could stay up late & watch a movie the other kids weren't allowed to watch & ice cream when we got home. Now I can see why I was helpful in talking him down, sigh. Anyway, he freaked out again & again. Finally the doctor says, "Are you ready?" and Sebastian says, "I guess.." More screaming, turning his head away, pushing the doctor's arm away with his hands.. etc. The doctor was finally able to get the tiny iodine brush near the corner of Sebastian's tightly shut eye. "Is it done yet Molly?!!!! Is it done yet?!?!?" He screamed this over & over. I finally said that it was, but it wasn't. The doctor couldn't get the iodine in. We tried again, still very traumatic for Sebastian, but the doctor was able to get the iodine in that time. At this point Sebastian had an orange circle around his eye, his tears were fluorescent yellow as was the drainage from his nose. The doctor told him that this would all glow in the dark - which it did not, we tried later at home.

So he takes 4 eye drops a day for 3 days. We go in Fri for a follow-up. We did one eye-drop tonight which was pretty traumatic, a lot of the same behavior, but went probably 25% better than the doctor appointment experience. The doctor taught me a trick - drop the 2 eye drops near the corner of Sebastian's eye, while he is lying back with his eyes closed. Then tell him to open his eyes and turn his head - and the eye drops roll in! Had we known this long ago I'm betting Judah's twice a week horrid eye-drop experience would have been so much better. That experience is even worse because we have to hold him down. I feel so awful about that one. I'm sure Sebastian probably assumed he would be going through the horrible, awful looking experience that Judah often went through, when he learned he had to do eye drops. Judah looked at Sebastian's eye drop bottle a couple of times and then he sat at the end of the couch as if he was supporting Sebastian. He knew exactly what that bottle meant. I can say "eye drops" and he knows exactly what it means.

I'm tired of writing. I have to go re-do the aide schedule that I spent hours on last night. Apparently I added the hours wrong and gave us more than we are allotted.

Judah was repeating a lot today. The massage trainer said, "Hey!" to him when he playfully spit at her. He said in return, "Hey!" and smiled. Verbally it was really an amazing day for him & I accredit it all to his aide who pushed him every minute of the way to talk today. She wasn't even feeling well at one point - she had to lie down & have bread & milk. She's pregnant & her blood sugar gets low sometimes, which was what was happening. I haven't mentioned that she is super-duper smart. She is teaching the kids so much!

Judah didn't have nebulizer, folinic acid in the b-12 shot, no miralax, no beta, no eyedrop, no fish oil. Nebulizer med should come in tomorrow, yay!! I think that has helped progression - glutathione, it's supposed to be really good for the brain.

Judah had one big bm. (bowel movement)

Tuesday, August 26, 2014

Graced By Amazing People

This was a super awesome day for Judah. He is so in tune with everyone suddenly. He is putting his dishes in the sink after every meal. He watered some of the garden tonight. He is swinging well - kicking out and pulling in with his legs even! (He started copying Sebastian.)

I was able to talk with his caregiver tonight. Sebastian & Willow were off getting haircuts with Papa and Gramma. She mentioned that she needs more one-on-one time with Judah, which was awesome because I had just been talking to Scott the day before about the line becoming fuzzy for Sebastian. She was trying to think of things she could do to make that happen. I told her not to worry about it - that I could find PLENTY for them to do! When we all do stuff together pretty consistently, it's completely understandable that Sebastian would think that she is now here to be with ALL of us, when she is really here just for Judah. But it was a really good talk with her tonight. She wants to do all she can for Judah. She let me know that she really believes he will be talking - maybe not right away, but at some juncture. We talked about many of the amazing characteristics he has. She shared with me that she loves his personality & talked about how fun he is to play with. Other aides have talked about this too - two fill-ins told me at the same time that they wished they could work with him regularly! Judah's aide always tells Sebastian what a big imagination he has & gives him positive support when he talks about his very unique inventions, thoughts & ideas. Our other regular aide compliments Sebastian on his wonderful creativity as well. So they aren't only really good with Judah & eager to help him progress, but they are exceptionally great with the other two as well.

Judah & his caregiver were home all day. He had a lot of "screen time" today. She reassured me that this wasn't something she would normally do, she just felt that he was having a rough day. She was able to turn videos on YouTube into somewhat of a learning experience though. In a big way she was showing him that she was interested in what he was interested in, which he absolutely loves.. who doesn't?! But obviously that strengthens their bond a lot, and gains more of his trust (specifically that he will be supported & listened to) & attention. That's the thing with autism, it's important to follow the kid's lead as much as you can. And it's also just common sense, people learn & progress more when they are doing things that they enjoy (besides watching TV I mean). The TV screen time has been cut down a lot since his aide has been here. Today was different, but today was probably comparable to many days in the past when I did not have an aide here.

I suggested Play-doh when I was trying to come up with things that Judah enjoys that are hard for him to enjoy with his siblings joining in. I didn't think he would be able to make a big mess if he had someone doing it with him one-on-one, but I was completely wrong. Halfway through their Play-doh adventure I got out the picnic table cover & told her that I usually put it on the floor when we do Play-doh. Whoops. After that activity the aide & I were on hands & knees trying to pull Play-doh out of the carpet for quite some time.

This afternoon the aide took Judah & Sebastian on a big walk while I was at my neurologist appointment. Scott was home with Willow. My neurologist wants to do blood work & make sure my b-12 levels are normal, as well as other levels. I was there to talk with him about my migraines & memory problems. He was very nice, patient, listened well, had a sense of humor & seemed genuinely interested in helping me. I'll see him again in 6 months if my memory issues have not disappeared.

Scott went out with one of our friends after work. Scott shared some disheartening stories about our last aide with him.  Our friend was kind of shocked & related by telling him that he really didn't have a good feeling about their aide. She was new. He also has a boy on the spectrum. Scott asked him what the new aide's name was... haha, sure enough! Same lady!! She found another job pretty quick! Scott told him about the company we recently found & how amazing our experience has been with them. I'm so glad that he could share this info with our friend, because this friend ALWAYS has helpful info to share with us every time we see him. It's hard to find people with kids on the spectrum and that are willing to openly discuss spectrum-related problems, info, etc. It's even harder to find people that do as much research as our friend and his wife do AND to be so lucky as to become friends with them! We've been graced with some amazing people lately. Our aides & these friends are eager to give us tools & information that will change our lives & Judah's. I don't know how we could ever begin to repay them.

Tonight I spent HOURS working on a schedule for September to send into the aide's supervisor. After that I spent hours writing up our appointments, dates, etc. and adding them to the aide schedule, so I could see in front of me what each day would be like. I've been wanting to do that for weeks - I had no idea it would be THAT time-consuming! I sent the full month of September on to Mom & Dave, so they can utilize in the future it if they need to.

Judah didn't have coconut butter (broken microwave - we melt it), nebulizer, folinic acid in b-12 shot, powder b-6 (needed by now), beta or iron up. He had 1 dose of miralax.

Judah had one big poop.

Judah had eye drops.

Monday, August 25, 2014

That Casserole Dish May Save Your Life

Today was fun. We all went to the splash pad together. Judah's aide was pretty shocked at how social Judah was. She had been out with him before but never with Judah's siblings there & at a super fun place that Judah loves. Judah & Sebastian ran circles around the splash pad. They were so active that we didn't even have to tell them it was time to go after we had been there nearly 2 hours. Sebastian REQUESTED to go. And the other 2 weren't objecting by any means.

Willow was continually frustrated with her one piece swimming suit. She doesn't seem to understand that it is not a shirt. She wanted "pants" on after I put it on her. She refused to take off her shorts at the splash pad when I asked her if she wanted to. She sees her brothers shirtless when they are outside playing in the water, so most of the time she just takes her shirt off too & joins them. But a one-piece swimsuit is damn near impossible for a 2 year old to get off on her own. She gets so frustrated. I don't know why I put her through that in public, it's silly really.

Judah found a group of kids his age to run in circles with & Sebastian did the same. Sebastian's new friends were excited that Sebastian had a water squirter and they wanted to be squirted! Sebastian spent a long time chasing them, squirting them, smiling & laughing every minute of it. I took some pictures of Judah & his friends all sitting on a park bench. They would ask him to join them in their chasing games. One kid asked him to hold his hand - and they ran in circles around the splash pad, hand in hand! Judah's aide was right by his side as much as she could be. She said the only time there was really any kind of an issue was when another kid wanted to stop playing & Judah didn't understand that & he kept chasing him. She told me a couple of times that she has NEVER seen a kid with autism be that social. She's seen autism her entire life - her sibling is autistic. She was pretty shell-shocked. I think she was sticking by him thinking that there were likely going to be some kind of problems - but there was only one small issue the 2 hours we were there, and it was nothing most kids wouldn't do. I think most kids would have many more problems in that time frame & situation,  but Judah is friendly, positive & very empathetic. Most of the time we were there, Judah was playing with his new friends. At one point he collided into a little girl about his size. Her parents quickly snatched her up. She was crying. Judah walked over to the parents & looked up at her. He was concerned. His aide & I told him, "Judah, can you apologize?" But we were completely unnecessary beings in that situation. The parents were ignoring us & Judah's empathy for that little girl was clearly all he could focus on. The little girl was finally put back down on the ground. Judah quickly approached her, looked at her face closely, then hugged her and gave her a kiss on the cheek. He stood there a bit more, looking at her face closely to make sure she was okay. Suddenly the parents stopped ignoring us. People make assumptions about special needs kids - but when you see things like that you get to see who they really are. He's a very loving kid. Would most 4 year old boys you know do what he did? Would any of them be that concerned? He was blessed with a huge heart.

Willow was a little pissed that her brothers suddenly had new friends & that they were playing chasing games without her. Eventually she got a hold of a squirter though. Then she was smiling. ;) All 3 of the kids figured out how to use those pretty easily when we first got them - they all enjoy them! All 3 of them log-rolled down a hill together today, many times. Judah had to start with his head on top of Sebastian every time for some reason. Judah laughed so hard when Sebastian would crash into him or roll over him. The aide got a bit worried until she realized that Judah truly was enjoying being squashed by his older brother.

Willow got water in her eye many times. That was the only thing she told Daddy about today's splash pad experience. She gets things in her eye all day long - "Pixie bite my eye!" - "Judah hit my eye!"- Today I was putting sunscreen on her face and she kept telling me, "Don't get it in my eye!!!"

Judah had a pretty amazing day. I was saying something regarding Judah to Sebastian while Judah was standing in front of me. I can't remember what I was saying, but I looked over to see Judah looking at me, as if he completely understood what I was talking about.. and he was listening.. he kept looking at me until I stopped talking. At dinner he made very serious eye contact with everyone, as he put his face close to mine, made some noises that reminded me of a space ship, and then moved on to the next person, doing the same thing to Sebastian, Willow & Daddy. He kept looking at me saying, "Mommy" while we were eating. I just know in my heart that he had something to tell me but he wasn't able to get it out. I had just told him to tell Daddy about how he chased his friends at the splash pad, etc. I was using short, simple sentences. I'm certain he understood what I was saying. He tried to add to the story, but couldn't get the words out. That's when he started saying, "Mommy" & looking over at me. Scott & I kept talking to him as if we were all having a conversation.. which we were, in a way. But it breaks my heart not to know if he is frustrated or if he likes how things are or if he has just given up. It breaks my heart not to know what he is thinking. It breaks my heart that he wants us to know him so badly & we want to know more about him, after 4 years we should know so much more.. and that we don't know what his questions are.. and his concerns. Today he was right there with us. He just isn't able to communicate verbally - and it's not his fault by any means, that's what makes it so unbearable at times. It's just unfair, it's so unfair.

No snake sightings today. I talked Scott out of sending an exterminator out to charge us $85 whether he found the snake or not. It's very likely a garter snake. From what I'm reading and hearing from others, garter snakes are apparently harmless unless you just really piss them off. We are right by the kids when we are outside & they aren't allowed near the garden right now. Mostly we are just worried that Willow or Judah might pick it up, because it very likely wouldn't scare either one of them at all.. it would more likely intrigue them. Sebastian knows not to mess with it & he'll come running to find us if he sees it, so we're not really worried about him. But with the 2 little ones we think it's best to remove it when it becomes possible. It's likely eating the slugs in the garden - helping more than hurting. I saw a few more holes in the garden dirt today - each one had an opening about the size of a quarter. We're wondering if those are snake holes.. I'm thinking there may be more than one snake out there, but I'm not sharing my thoughts on that with Scott. The snake went through a vent on the house last night. The vent it chose connects to the fan on our stove. So we had the fan on for a long time. I had the stove on at 425 degrees - getting ready to bake French fries. The snake may very well be dead in that vent tunnel. Scott put a large glass dish on top of the stove piece that would be the only place he thought the snake might be able to come out. We use a casserole dish to protect our home from snakes...

I made the kids smoothies tonight to use up all of our fruit, yogurt & spinach that was soon to go bad. I HATE throwing food away. After throwing so much food away yesterday - TWO PLASTIC GROCERY BAGS FULL - I felt it very necessary to go through the fridge and collect everything that was going to expire soon. I grouped it all together & have been working diligently to feed this food to all of the mouths that come through our home, well except the snake.

Judah was in underwear while he was home today. We were out for 2 hours - he had a swim diaper on at that time. He had no accidents in his underwear. While playing outside he started doing his potty dance. I asked him if he needed to potty. "Nope!" he said. Then the dance got faster and I nudged him inside. Once in the door he RAN to the bathroom. After we got home from the splash pad I saw him dancing again.. this time it was the poop dance, more of a rocking motion while holding the bottom of his belly. I got him in a diaper & he pooped in less than 7 minutes. Huge poop - the aide cleaned him up.

Judah only had his first milk.
He also missed his coconut butter (couldn't melt it due to no microwave & stove laziness)
He missed 1 tsp molasses that would have been in 2nd milk.
Also missed nebulizer & folinic acid. I left message for Dr. Green requesting refills - he should be back in town by now.

Sunday, August 24, 2014

Another Microwave Bites the Dust... (update) -- Or Does It?

The microwave broke tonight. I cannot begin to tell you how many microwaves we have gone through. Our fridge broke not too long ago too. Aren't those things supposed to last FOREVER??!?

Sebastian spotted a snake in the garden tonight. We were both standing very near to it. We watched over it until it slithered through a vent on the side of our house. Scott came home, got a shovel & flashlight & tried to open the vent the snake had gone through. He was out there for a long time. His plan was to smash the snake with a shovel. Unfortunately for him, the snake never showed up to the party. That particular vent the snake chose connects to the fan on the stove. We kept that on for a while. No snake. I also had the oven on at 425 degrees (I was cooking, not trying to fry the snake. No one will believe me on that because I never cook).

Before the snake..
Scott took Willow & Judah to the store. I took Sebastian to the park for some Mommy/son time. I had promised him a while back that we would do this. I'm going to schedule a specific time (probably every Sunday) where we have time together. He rode his bike along the trails. We stopped at one of the playgrounds. He was on the swings for a while. I had never seen him do the "out, in" with his legs to help him go higher. I've been trying to teach him that for years!! He went insanely high on the swings. He showed me some of his hide-outs. He climbed some trees. Then we went home where he was going to watch a movie that he couldn't watch when his siblings were home. He was excited about this. And then along came the damn snake, taking up way too much of our time. I sent him in to watch his movie but he couldn't figure out the DVD player - I didn't know this until later, he didn't even tell me, poor kid.

eye drop done at 3:30

PS!! Days later we realized that the outlet, actually MANY outlets, were not working. With some breaker flipping and re-set button pushing on the outlets we have microwave magic again!!!

Saturday, August 23, 2014

Rodeo Music On The Harmonica

Today wasn't awesome for me, headaches. Scott & I spent some time together - talking about the Social Sibs info. The kids were with Gramma/Papa all day. Scott said Judah did well in his speech & music therapies. Angie has a new intern at music therapy.

The kids came home wired for sound. I'm surprised they were all able to go to sleep!! Judah was interacting with everyone - repeating Sebastian, singing to his Wall-e music (he ran to the cd player & turned it on as soon as he walked through the door), he brought his new Angry Birds book to Papa to show him, later he rode Scott's shoulders, laughing hysterically the entire time. Sebastian came home & played "rodeo" music on his harmonica. It was really good! Wish I would have recorded it! Then Willow had a turn on the harmonica. She busted out in dance movies and loud bursts of harmonica chords! Sebastian said he played badminton with Gramma. They both explored Woodmansee park together today while Papa played with Judah & Willow at the big Gramma/Papa house.

Judah had no bm's today that I am aware of.

Meds Completed

  • Vitamin D3 2000 IU one daily(morning)
  • bethanechol 25 mg 1/2 tablet 2/day
  • Probiotic 1 daily in morning
  • DMG 125 mg w/Folinic Acid &Methyl b-12 3 capsules in morning
  • WP Minerals 1/day
  • Sleep factor
  • Creon (pancrilipase)
  • his b-12 shot 
  • Oxy-Mag Powder 1/2 teaspoon 1/day
  • Molasses 1 tsp in almond milk
  • Organic coconut butter 1-3 tsp/day  - 1 tsp
  • Levocarnitin 10% 1 Tablespoon 15MLS every morning
  • DOCU 150/15ML Liq Hi-Tech 2 MLS/twice a day (We just switched this to ONCE a day today - done one time today.)

  • Meds not complete - 
    • Folinic acid to add to b-12 shot (we're out)
    • Fish oil
    • Miralax
    • nebulizer
    • Iron up 1 tsp/day

    Meds didn't take -
    • Beta TCP 1-4 daily
    • Powder B-6 1/2 tsp (fridge mix) every 3-5 days 
    • skin rash med not needed
    • eye drops!!!!!!! MUST DO TOMORROW!!


    Friday, August 22, 2014

    Last Day of Basketball Camp

    Today was Sebastian's final day of basketball camp. He begged me to come inside & watch but I couldn't with the Willowbug in tow. I was afraid she would get hurt. Last time I took her she wasn't able to stay off of the court. They've been scrimmaging at camp & Sebastian has shown me his dribbling skills at home - very impressive! Today he received a certificate for participating in basketball camp. I'm so proud of him. I'm probably going to either frame it or laminate it! :) Assuming it will survive years later after being laminated??

    Sebastian & the aide had lots of outside play time with cars in the dirt. She worked on the signing flashcards with him. She's actually taking a sign language class at school. And his other aide knows sign language! We are so lucky!!! His speech therapist is recommending sign language -which is something we've been wanting to teach him for some time. His aide even gave him a bath today! She asked to wash his hair & I told her she didn't have to do that. She was eager to do it though & was going to try, but unfortunately there ended up not being enough time since this was near the end of her shift. Judah carried around his Wall-e coloring sheets all day - I had printed these from a site online. He didn't scrunch them up or tear them like he used to quickly do with his Thomas sheets we used to print up. With those he would enjoy them for 3 minutes & then destroy them. He's been careful with the Wall-e papers. Either he's learned to be gentle with things or Wall-e ranks pretty high above Thomas.. which would be quite an accomplishment for any toy or person, even Oprah!

    The aide is helping to keep Judah off of the TV stand, which is great, especially since I can't lift him. He likes to jump on me from there. We are also making sure to keep the TV off when we eat & eat at the table - this goes for all the kids, but Judah gets the reinforcement much more often since he has an aide. I've also asked her not to allow him to eat while playing on the I-pad, phone, etc. Today I gave him a timer & let him play until it was up, then I took the I-Pad away and let him know that it was time to eat, which he did with no problem. That's our strategy, has been for a long time, but with the aide doing it as well, he will be experiencing it even more often - which hopefully helps him learn that playing & eating are 2 separate events.

    The aide surprised me in that she liked the schedule the other aide had written up. I freely told her that she could make Friday his special day to deter from the schedule and do something regular with her.. which in a sense is still a schedule because Friday would be the day he always does such & such with the other aide. But she liked the schedule - she tried to adhere to that today. It was difficult. She followed his lead & taught him through whatever they were playing. Judah has learned sentences well through tactile stimulation at school. He used to touch the word on his book at school while saying it at the same time. "I want chips."- touching each word as he said it. But the words don't have to be there. I can say the sentence and touch him for each word & he will likely repeat it back. Maria was swinging him today (for 30 MINUTES because he wanted to) and she was working on sentences, saying a word every time she pushed him. She didn't know his history & success with tactile stimulation, so she had no clue what an ingenuous idea she had just come up with! That was awesome. These aides are hard workers & thinkers!!

    Sebastian wanted to play in the sprinkler but Willow was asleep and Judah was taking a bath. I told him he could play on his own, but he really wanted someone to play with. Willow caught on to what he was doing after she woke up and saw him run outside. She said, "I want to get wet!!" Then she tore off her shirt (because brother was shirtless) and went out to run through the sprinkler with a big smile on her face. She isn't always excited about the sprinkler, but it's definitely growing on her. When she first played in it I remember she grabbed the extra sprinkler head and tried to throw it away!! haha. Sebastian had the water squirters that Granddad & Meemaw had bought them. Willow quickly figured out how to load these 12 inch Styrofoam tubes with water & started shooting! I went outside to check on them, only to be quickly sprayed down by the 2 year old with a perfect aim! Willow & Sebastian both laughed pretty hard about that. Daddy came home & told Sebastian firmly not to squirt him. Then he turned the corner where Willow was waiting on him with her squirter fully loaded. Daddy smiled at her, not expecting her to know how to use the squirter. "Daddy!" and then a big ball of water came flying towards him (as Sebastian describes it - he still laughs about it). Willow thought this was hilarious! Scott walked in the house, his shirt soaked, and told me, "Willow got me!!?!"

    I went to Walgreens to pick up some medicine tonight & found clearance everywhere! They are trying to clear out for Christmas. ?!?! The manager told me the Halloween & Thanksgiving were stocked in the back when I reminded him about the 2 big events that happen BEFORE Christmas. Apparently other retailers are decking the halls over 4 months early as well. I hadn't been in our Walgreens for quite some time. I was really surprised to find that most of the same employees were still there! I was even more surprised to see that none of them had been promoted yet! Anyway, I stayed there much too long. I bought 4 pairs of really cheap flip-flops for myself and a bag of prizes for the kids (mostly to use for the boys' star charts). Scott was at home, concerned, because I had run down the street to Walgreens & had been gone for over an hour. He knew I had gone to buy ONE THING, which I didn't even come home with.. not the first time that has happened. ;)

    Judah had one large bm today.

    Meds Completed

  • Vitamin D3 2000 IU one daily(morning)
  • bethanechol 25 mg 1/2 tablet 2/day
  • Probiotic 1 daily in morning
  • DMG 125 mg w/Folinic Acid &Methyl b-12 3 capsules in morning
  • WP Minerals 1/day
  • Sleep factor
  • Creon (pancrilipase)
  • his b-12 shot 
  • Oxy-Mag Powder 1/2 teaspoon 1/day
  • Molasses 1 tsp in almond milk
  • Organic coconut butter 1-3 tsp/day  - 1 tsp
  • Levocarnitin 10% 1 Tablespoon 15MLS every morning
  • Iron up 1 tsp/day
  • DOCU 150/15ML Liq Hi-Tech 2 MLS/twice a day (We just switched this to ONCE a day today - done one time today.)

  • Meds not complete - 
    • Folinic acid to add to b-12 shot (we're out)
    • Fish oil
    • Miralax
    • Nebulizer

    Meds didn't take -
    • Beta TCP 1-4 daily
    • Powder B-6 1/2 tsp (fridge mix) every 3-5 days 
    • skin rash med not needed
    • eye drops!!!!!!! MUST DO TOMORROW!!

    Thursday, August 21, 2014


    Today I left the house around 8am to head up to Portland. Dave came to watch Sebastian & Willow. He took Sebastian to basketball camp & picked him up. Judah's aide was here for him. She took Judah out for the day. They went to The Discovery Center. She said they went to the train room FOUR TIMES! I love how these aides will do stuff like that for him. I wouldn't even be able to with 2 other kids in tow. They stopped for French fries & went on to the park to play & have lunch. The aide lost her keys at the park. She had an extra key, so they weren't stuck there. Instead of making Judah spend all afternoon looking for her keys, she took him to Jamba Juice (his favorite - it was his birthday party theme last year, with a "4" candle in his smoothie!) and they had smoothies. It was a super-duper day for him. He give her a big, loud, "Bye!!!!!!" when she headed out. Her shift was done & she was going back to the park to look for her keys.

    Dave & Gramma took the other 2 to Marco Polo for lunch. They went to the park as well. Dave said he saw Sebastian shoot 6 baskets when he came in at the end of basketball practice! That was only day 4 of playing basketball! Sebastian told me that they "scrimmaged". There's a word I haven't heard in a long time! I'm basically re-learning basketball terminology and trying to remember the rules of the game that I used to know forwards & backwards as a kid. It's kind of fun.

    I spent the day in Portland at a SibShops workshop. This was a training of sorts for people who want to facilitate SibShops in their community. Tomorrow they will complete their training. Today was also open to people who weren't doing the training - people like parents, psychologists, teachers, grandparents, foster parents, social workers, advocates for autism, people who work for autism organizations.. all KINDS of people! It was a big crowd! I walked in 30 minutes late and saw someone in the crowd standing up, talking on a microphone. I grabbed a seat and soon learned that the mike was being passed from person to person, allowing everyone to share a bit about themselves & what they hoped to get out of the workshop. I shared that my son is starting to bring friends home & it's something that we need help with in terms of what to do & how to support him. I also shared that my kids are becoming incredibly aware of Judah's differences & shared a story about Willow - The other morning Willow said that Judah hit her baby in the eye. Judah said, "In the eye?" And Willow says, "Judah.. talk.. Judah''s talking!!" She's two. Everybody "awwww"ed at that story. She's 2 and she realizes that he is delayed. I didn't know that.

    I was able to get the friends question answered pretty clearly when I spoke with one of the people that was on the sibling panel during the second part of the workshop. I picked the youngest one to talk to. Ages of people on the panel ranged from highschool to 60's. They were all older siblings to someone with special needs. And every single one of them had a really good job. One was a pediatric nuerologist at OHSU, another was an opera singer.. who sang in another language (can't remember what language), one was a highschool cheerleader in her senior year, I think one was a lawyer.. I can't remember all of the jobs. We were taught in the first part of the workshop that the older sibling is very often a perfectionist. He/she is responsible & mature at a young age. There's no question why. They all had heart-wrenching stories and talked about situations you couldn't imagine speaking about without breaking down - but they had gone through them so many times that it was just life to them, it was nothing new. The highschooler said it takes 3 people to hold her brother down to get him on a plane (he hates planes). Her neighbors have called the police on occasion - probably assuming the worst when it was really just "life" to her family. She told me she knew exactly what I was talking about when I told her about my oldest bringing friends over. Her advice was to tell the parents & also to encourage Sebastian to talk to his friend about it if he wanted to.

    I got lots of my questions & thoughts out during the first half. When he asked if anyone had stories about their kid's sibling being embarrassed he said, "Anyone got any good stories about that?" I didn't think I did until I remembered the first day of Kindergarten this year. He went right to me when I raised my hand. I felt so unbelievably bad about that day, I wanted to erase it somehow & start it over for Sebastian & Judah. But when I told that story to a large group of people that could relate to it well in probably many different ways, I felt so much better. I didn't expect that. When I sat down to eat at lunch the 2 ladies I sat by remembered my stories. I felt like I was sitting with friends, but we were nowhere near friends - I didn't even know their names. But we talked easily and comfortably and had much in common, like good friends do. That's what SibShops is all about - getting the siblings of special needs people together, allowing them to see for themselves that they are not alone.  It gives them a place to share their stories & feel safe doing that. It gives them friends that can relate to one of the biggest pieces of their life... and that's crucial. SibTeen exists as well.

    I wanted to post some notes that I took during the workshop as today's blog entry.. I didn't plan on writing all of the above!!! Notes below.

    • Your oldest normal kid existence gets harder. Our oldest often wants to be like everyone else.
    • Validate your kid's feelings - "I feel like that too.."
    • Give your kid space when he asks for it - he goes to his room or gets up early to have alone time.
    • Oldest may feel guilty because he is more typical and able than his special needs sib
    • Oldest may be angry that others have typical sibs
    • Oldest may feel guilt that he can't protect his special needs sib
    • Oldest may have guilt over not liking his special needs sib
    • Oldest may have frustration that he can't always communicate with his special needs sib
    • It makes me very concerned that our oldest's feels the need to have immediately forgiving behavior (early maturity) towards his special needs sib when typical kid would have anger. I'm afraid he is learning to hold his emotions & feelings in. I'm also concerned that this anger may derail in sister's direction instead or come out in other ways & situations.
    • I'm concerned that he may feel the need to be the adult. When I have him help out I feel guilty that I could be adding to that problem. However, learning to help out and to do new things is something that is also good for kids.. it's pretty normal. I think the star chart has helped to put a positive spin on things & maybe less of an "adult in training" feeling.
    • Oldest keeps feelings to himself - I'm afraid he does this quite a bit
    • Bash wants more one-on-one time with me. I need to schedule it to make sure it gets done consistently & often.
    • Oldest's problems aren't taken as seriously or cared for enough - attention goes to special needs sib (we have this problem too)
    • Oldest feels need to teach or parent their special needs sib. Our oldest wants to teach his brother how to read, etc. He announces it proudly.
    • When special needs sib is going to enter a situation or do something that the typical sib is very familiar with, be sure to ask the typical sib to share his thoughts, give him his light to shine.
    • Let oldest know that special needs sib likes to be treated as a typical kid.
    • Give special needs kid chances to make a difference - let him mop the floors, vacuum, etc.
    • Make sure oldest knows that he did not cause his sibling's diagnosis.
    • Realize that siblings of special needs kid are often jealous of all the attention special needs sib gets (aide).
    • Ask your service provider to spend time with the special needs siblings.
    • National Organization for Autism is a resource for books on autism for siblings
    • Share special needs sibling's future plans with other siblings. (they may be worried how their lives are going to be impacted in the future)
    • Siblings of special needs child believes that their home life is typical.. then they go to a friend's house.
    • "Sibling Survival Guide" - recommended book
    • Sibling Leadership Network
    • Typical kid is learning from parents what to think about special needs kid. They are learning how to act & treat special needs kid - all of this through watching what we are doing.
    • Woodbine House - has books for siblings
    • "Views From Our Shoes" - another recommended book (I think he wrote it)
    • Our oldest asks & says: When will therapy stop? Did you have therapy when you were a kid Mom? When will he learn to talk? Why isn't he talking.. but 3 year olds talk.. what's wrong? I'm going to teach him!!"
    • Teaching the "A" word to special needs siblings ultimately helps them make sense of everything. We've had this conversation with our oldest recently - hopefully helping him begin to put it all together.
    • I question if we are putting pressure on oldest to hide his feelings & be perfect. He often only tells us good news & will tell me when something bad happens in a way that says, "It's alright, no big deal." Is he saying - Don't worry about me.. you've got enough going on.? Then he has night time behavior that seems to be a desperate cry for attention. How do we help him balance his emotions?
    • Tell oldest that we have high expectations for EVERYONE in the family, not just him.
    • Relate to his isolation. (sibling of special needs kid)
    • Are we acting differently towards the siblings of our special needs kid because we are so stressed & busied over the challenges & hurdles autism brings into our life?
    • Benefits of having a special needs sibling - Free carousel rides, huge knowledge of autism, leadership skills, have pride, empathy, & maturity, learned responsibility, learn to help others, great patience, learn sacrifice, learn to tolerate more, less judgmental, more accepting, inspiring to others, crazy sense of humor, appreciation for things others typically take for granted.. namely our health.
    •  Make sure of special needs kid's siblings have personal future goals (many go into professions where they can help others)
    • Siblings can see their special needs sibs abilities while others are seeing the disabilities
    • Siblings often have loyalty to their special needs sib, defending them at times
    • Try to minimize typical sibling's concerns & optimize opportunities for him
    • Provide age-appropriate info (books for kids on autism)
    • Help your kids meet other kids who have special needs siblings.
    • "Sibling Slam Book", "Thicker than Water" - more books
    • Active daily listening is the best communication we can have with our typical kids.
    • "How to Talk So Kids Will Listen & Listen So Kids Will Talk" - book
    • Give typical kids one-on-one special time - utilize respite (especially for events you shouldn't miss)
    • Does my oldest resent me for wanting time to myself? I'm thinking he probably wants that to be his time.
    • "Sisterhood with a Twist of Autism", "Riding With Siblings", "Special Siblings"
    • Reassure your kids - make plans for the future!
    • Joe Pinter - pediatric neurologist at OHSU - was on the sibling panel
    • Barbara Walters is a sib!
    • Make time to do what kids really want to do - beach, Enchanted Forest, etc.
    • Realize that the siblings of special needs kid see him as a lifelong commitment. These siblings will know him much longer than we will.
    • Special needs kid teaches siblings to think outside of the box.
    • Wonder if oldest doesn't know that letting out emotions is okay, or just doesn't understand what he is feeling. When J left on his first outing without us S said, "I thought I was going to have a tear. I don't know why." He looked at me, fighting back tears when he told me that.
    • Our oldest often doesn't boast his achievements.
    • Involve oldest in special need sibling's future plans - may help them relax & feel more okay about the future
    • S told me that he got hit with the basketball like 3 times during practice the other day. He wasn't upset or mad about it, just telling me like it was just something that happened that day, no big deal.
    • Magnetic Renosance (sp?) Therapy - MRT - not clear on this
    • Facebook groups: Sibnet, Sibteen
    • How can S teach J without being a parent?

    Wednesday, August 20, 2014


    The helper wrote up a schedule while I was taking Sebastian to basketball camp this morning. She covered 9am-5pm, transitioning him regularly about every 15 minutes, except for lunch & the daily outing. After that she seemed much more relaxed & eager to jump in head first. I applauded her schedule & told her what I saw that I didn't think would work, which wasn't a lot. It will be tweaked quite a bit along the way I'm sure, but just having a schedule for him is awesome. They started it today - Judah did very well. She worked on sign language with him (which will be daily). Letters & number practice will be daily as well, as will art. There are also sections of time that are "choice", which means she gives him 3-5 picture cards to choose from. Each card is a picture of a different activity. This allows him to pick the next activity throughout the day & she follows his lead (very important). I'm curious to see how the siblings are going to react to this change. I will need to make schedules for them as well.

    The helper has also been sharing some of her experiences with autism. She knows that world pretty well. She lives there too. A family member has autism - this person told her that autism makes you feel like people are just telling you what to do all day long, since they really don't know you - because you are literally unable to be who you are inside. He said he felt like he was wearing a mask. Autism makes it much harder for you to get your words out.. and many other things. It blocks you from being yourself. The mask was a really good analogy of that.

    Judah went to the library & for a walk downtown with the helper today. The rest of us were at the dentist. It took about 30 minutes for my teeth cleaning. Then another 30 for the dentist to make his appearance. He had been working on the guy to my left before my cleaning had even started & was still there when my cleaning was done. Word to the wise, don't buy toothpaste that reads "tartar control". He gave me lots of useful info today, except for the story about his son's double a hernia. Totally unnecessary.

    We drove home from the dentist. As we passed through an area close to downtown I looked out the window & noticed our helper, strolling down the sidewalk. ?!?!?!! Then I saw Judah lagging a bit behind her. I said, "Hey guys look, it's Judah!" Sebastian & Willow = "What??!?!!" That's definitely never happened before. The kids banged on their window, while I reacted by sticking my arm out the window, waving it around like a crazy lady. Obviously we don't see him strolling through downtown Salem very often. Neither Judah or the helper noticed us acting like complete idiots, trying to get their attention, which was good because who knows how Judah would have reacted. Apparently my brain had shut off & I had decided it was a great idea to stick my arm out the window to gain the attention of my pedestrian 4 year from across a lane of traffic. Gawd.

    Sebastian had a picnic with Gramma & Papa today. The kids did the second step of Gramma's birthday project. It will be finished tomorrow - which is when she will drop by.

    Judah progress, pretty awesome, definitely connecting with others. He sang the Wall-e song, "Out There" again most of the day. What was funny was when he walked into the playroom, joining his other 2 siblings, and just started belting it out!! ha. The words are getting more clear when he sings - it's definitely great speech practice. I've noticed he sings perfectly in tune from time to time. He gets that from me. ;p

    Judah didn't poop today. Kept his underwear dry all day - was in underwear most of the day (probably why he didn't poop). He did well with the potty training, earning 2 more stars on his chart - which puts him at his first big star.. so he's due for some kind of reward. Ideas?? It's one of the many medium stars he will hit along the way to the big star (the BIG reward). Sebastian is nearing his 2nd reward.. he's hoping to stay up 30 minutes past bedtime for that one. Sure, we can do that! ;)

    Meds Completed

  • Vitamin D3 2000 IU one daily(morning)
  • bethanechol 25 mg 1/2 tablet 2/day
  • Probiotic 1 daily in morning
  • DMG 125 mg w/Folinic Acid &Methyl b-12 3 capsules in morning
  • WP Minerals 1/day
  • Sleep factor
  • Creon (pancrilipase)
  • his b-12 shot 
  • Oxy-Mag Powder 1/2 teaspoon 1/day
  • Molasses 1 tsp in almond milk
  • Organic coconut butter 1-3 tsp/day  - 1 tsp
  • Levocarnitin 10% 1 Tablespoon 15MLS every morning
  • Iron up 1 tsp/day
  • DOCU 150/15ML Liq Hi-Tech 2 MLS/twice a day (We just switched this to ONCE a day today - done one time today.)
  • Fish Oil 
  • Miralax (twice)

  • Meds not complete - 
    • Folinic acid to add to b-12 shot (we're out)

    Meds didn't take -
    • Beta TCP 1-4 daily
    • Powder B-6 1/2 tsp (fridge mix) every 3-5 days 
    • skin rash med not needed

    Tuesday, August 19, 2014

    Screaming Slugs in the Garden

    Today was superkalalicious for Judah & his speaking skills! This morning Willow and Judah were sitting by me in bed. Willow said, "Judah hit her eye." I think he had her doll or something. Judah responded, "Her eye?" Willow didn't say a word.. then she said, "Judah talk. Judah's talking!" I didn't know that she understood his speaking skills weren't up to par, but apparently she was well aware of that & caught one of those little moments when Judah responds to someone out of nowhere. I heard lots of requests & he made a lot of choices. He was very affectionate & active most of the day. He stayed dry in his underwear. I can't remember if I heard sentences but I would bet anything that I did.. he was a star today & seemed very aware of it! Judah made a friend in the waiting area at the doctor visit. He followed another little boy around and did all of the same motions the little boy did. The little boy pointed to the fish outside in the water and told Judah what they were. Later the little boy approached Judah, wanting to walk around some more. It was really cool to watch. He had a lot of firsts today - that was one (the communication between them was working somehow). I can't remember what the other firsts were - I just remember telling the helper "that's a first" probably two other times!!! I bet the singing Wall-e music with total confidence to everyone was one of the 2 firsts.

    Judah had a doctor visit this afternoon. Our new helper (regular M-Th) went with us. Good checkup, nothing to report. We had to make an appointment for her to write a letter (more like a note) saying that she thinks he needs a weighted vest, blanket, etc. This letter goes to disability & they take it from there. The weighted items help to calm. He likes the pressure. They may also act to help him sit still & stay in one spot if he is all over the place. A friend let us borrow her weighted blanket - we did see results from that. He stayed in bed!! haha. He had gotten up 20 times directly after we put him to bed. Finally I remembered the weighted blanket. He didn't get up until really early morning (his usual time) after that blanket went on him. They tried the vest in speech last weekend. I wasn't there but Scott said he didn't think it did much.

    Judah's eye drops done today.

    Sebastian went miniature golfing with Papa today. Then they came back & worked on the garden. All the kids of course ended up "helping" with that. Dave put down walnut shells & something else to deter the slugs that are feasting on the garden. Supposedly when they try to go over the walnut shells it is painful for them. Screaming slugs in the garden tonight...

    Judah was on a real Wall-e kick today!! He sang the theme song all day long! And got better at it the more he practiced.. "Out there!!! Full of shine & full of sparkle..." He wanted to watch the movie a second time this morning. We searched through all of our books for the Wall-e book - never found it! We were finally able to deter him with Angry Birds. Then I remembered the Wall-e soundtrack.. but didn't get around to that until after the doc appointment (the morning flew by). I put in the soundtrack & his eyes lit up. After it played he started chasing me around with Sebastian's Wall-e (about 1/3 the size of Judah). He carried that around ALL DAY LONG. He continued to beg me for Wall-e. Finally I agreed to put it back on. But he wouldn't let me put the movie in! I held up the soundtrack & told him, "Listen to music? Or watch movie?" He picked the soundtrack.. and loved it. I put it on for him while he took his bath tonight. He ordered me out of the bathroom several times. He sang along to the few songs that involve singing & acted out the scenes to a lot of the music. He hasn't seen that movie in a LONG time & just started watching it again yesterday. But he could very easily remember what the character's were doing when any specific song played - songs that sound something like electronic tools, orchestra, Wall-e noises, the random keyboard noises that aren't keyboard sounds & maybe throw in some cell phone alarm choices... combine that all & spread it out amongst 32 songs. Remembering what the characters are doing for each song is HELLA impressive. I watched from the cracked door while he was acting these things out & singing. He was very into it, looking up and smiling as if he were looking up at the spaceship in the movie. His smile was very real, very happy. He looked like he was just in awe.

    At the doctor he picked out a "Turbo" (movie) sticker to take home. It's a picture of a snail. I'm predicting that to be the next movie once Wall-e fades... IF he fades.

    Got Judah's school info. He'll be at a new school, but still not far. Of course new teacher, weird days (only 2 of course) & long list of very needed but VOLUNTARY supply list, haha. I'll bring some - but my goal throughout the year is to make sure they never run out of Rice Chex & Veggie Straws.

    At the support group meeting the other day one of the women spoke about WESD and how awesome they are. She said she talked with her kid's teacher on the phone every day after class for 30 minutes!! She said her son had really good progress, etc. Through conversation we realized that our boys were in the same class. !?!?!??!!!!!!!! We talked about the bus issues we had. She had the same of course. There were days when her son was not picked up. They kept sending him on the bus though. There was only one parent that took their kid to school & picked him up except myself. That's why I had never seen her.

    The new girl wants to take advantage of the picture cards I have made over the years & the sign language stuff we have. She knows sign language. She is in school, ultimately focused on being an English teacher for the deaf. We have wanted to help Judah learn sign language for a  long time. We've wanted to do so many things. They aren't all possible - we'd have to drop 20 to make it successfully through one big one like that, but I'd still try. I'm so glad she's here!! She also has experience working with autistic children & has a younger bro (26) who is on the spectrum. That also was very nice to hear. She worked well with Judah today. It was HOT today. I mentioned to her that I lived in Phoenix for 10 years - and that living there was much worse than the heat we had today. Somehow it's still feels like the same level of misery though, don't know why. Anyway, she immediately tells me that she had lived in Phoenix for EIGHTEEN years! She's got me beat by far. She's got the whitey white skin like me... I don't know how either one of us survived that place.

    Judah saw his pediatrician today, ran up to her and hugged her leg. It was kind of awkward though because she had a long skirt on & he pulled it up above her knee to hug her! I didn't know what he was going to do!! Very unexpected, haha. An MA came in at the end of the appointment. She was wearing bright red scrubs - her top was covered in hearts & flowers. He saw her & said, "Pretty!!" Then he dashed across the room to her & gave her a big hug! She was so happy - like very genuinely happy, i'm guessing that could have easily made her day.

    Judah pooped first thing this morning & later this afternoon. The helper was able to see how he acts before he poops - signs that he needs a diaper, so that was good.

    Sebastian earned 2 stars on his chart today - he swept & put away the dishes. He really wanted to wash the dishes (he enjoys that), but there wasn't time. Scott & I made up a list of ways he can earn a star.. we came up with 23. If I can find it I will paste it in here. I printed up the list, laminated it, cut out each job & hole punched them all. Then I put them a a carabeaner & hung it next to his door. He never noticed it though. He was in such "go, go, go!" mode that he would have tried to get in as many as possible in one night had I showed him the cards I made... and I wasn't ready for that. I deterred his energy with making birthday gifts for Gramma. That took up a lot of time. He will need to do at least one of each job we came up with as he fills up his stars. He actually got a 3rd star today for no time-outs, but he isn't aware of it yet - that's one from the list.

    This is such a ramble. I'm not even going to read it again. I apologize if parts don't make sense... I can explain them clearly if you are really interested though. ;) Just leave me a comment... you'll be my 4th comment if you do!

    Meds Completed

  • Vitamin D3 2000 IU one daily(morning)
  • bethanechol 25 mg 1/2 tablet 2/day
  • Probiotic 1 daily in morning
  • DMG 125 mg w/Folinic Acid &Methyl b-12 3 capsules in morning
  • WP Minerals 1/day
  • Sleep factor
  • Creon (pancrilipase)
  • his b-12 shot 
  • Oxy-Mag Powder 1/2 teaspoon 1/day
  • Molasses 1 tsp in almond milk
  • Organic coconut butter 1-3 tsp/day  - 1 tsp
  • Levocarnitin 10% 1 Tablespoon 15MLS every morning
  • Iron up 1 tsp/day

  • Meds not complete - 
    • DOCU 150/15ML Liq Hi-Tech 2 MLS/twice a day (only got one dose, ran out - may be stopping this med and switching to tsp. mineral oil/day)
    • Folinic acid to add to b-12 shot (we're out)

    Meds didn't take -
    • Beta TCP 1-4 daily
    • Powder B-6 1/2 tsp (fridge mix) every 3-5 days 
    • Fish Oil 
    • skin rash med not needed
    • Miralax