Michael and Rory

I know you aren't supposed to compare development of any 2 kids because they all develop at their own rate and blah blah blah, but I took this video of Rory last night and it reminded me of one I took of Michael at a similar age. Michael was actually about 2 months older than Rory is now in this video. This was the first time I heard him say "9" and "8". Also, what sounds like "what's that" is just a sound, not him making useful use of words.

Complete 180

Wow, speech therapy today was a complete 180 from last week. Last week we had an epic meltdown that ended with me dragging him out to the car and forcing him into his seat. Today he was chipper and cooperative and did pretend play! He even led a lot of the pretending which was super awesome!

It went something like this:


ST: What kind of juice would you like? Apple juice? Milk?
M: Apple juice! (pretends to drink) Mmmmm
ST: Ooh what do we have in our basket?
M: An apple! (pretends to pick it up and eat it)
ST: Oh do we have some sandwiches in the basket?
M: Yeah!
ST: What kind of sandwiches? Tuna? Grilled Cheese?
M: Peanut butter jelly! (pretends to eat)
Me: Oh can I have a sandwich too? What kind do I get?
M: Here mama, peanut butter jelly!
ST: Oh do we have some cookies in there?
M: Yeah! (pretends to eat one)
ST: What kind of cookie is it?
M: Brown!

:)

The ST and I got talking and she was telling me that the student that was sitting in on her session last week (during the epic meltdown) told her she was very impressed how I handled myself and Michael during all that. Then the ST told me that she thinks I'm meant to be Michael's mom because I handle him so well. I really needed to hear that. :') <--- happy tears!

Visit with Santa!

We've been delaying this ordeal for a couple weeks now after remembering what it was like the past few years. Since Christmas is on Sunday, we figured we better get it done already! We gathered the babies up after getting them dressed in their new Christmas-y outfits and got in the car. Everyone was happy and laughing - phew! Step 1 complete! We got to the mall and did a test drive of our -new to us- stroller. The kids thought it was tons of fun. Step 2 complete! We headed over to Santa and of course he was "out feeding his reindeer". No! The same thing happened last year. So we decided to go grab a bite to eat. This was traveling in dangerous territory...food and new shiny clothes...ahem. Michael only spilled a little bit of soda on his outfit, but nothing that was noticeable. Step 3 complete! We headed back to Santa and there was already a line forming and he wasn't even back yet. So we stood in line for about 20 minutes. Michael just sat in the stroller patiently but Rory was getting impatient and trying to run off into the stores. I chased her around a bit. She was about done with the whole idea. Finally, it was our turn. We decided to ask Santa to stand behind the chair like he did last year and try and have the kids sit on the chair alone. FAIL! Rory was scared out of her mind and would not sit down. She was hopping around, screaming and turning her butt toward the camera. Michael was being so sweet, trying to calm Rory down. After a few seconds of this crazy, we decided to have Santa try and sit on the chair and hold Rory down. Michael did AWESOME and let Santa come sit next to him without any protest. After a few screaming shots, we took Rory off of his lap. Michael then sat on Santa's lap! Santa started asking him if he liked Thomas the Train and of course this perked Michael up and he actually SPOKE to Santa! Then they both got peppermint suckers and were happy as clams after that. :) Michael did SO amazing and I was not expecting that at all. I'm so proud of him!

A conversation!!

I finally got smart and decided to get it on video. :)

It happened again!!

So today Michael's teacher sent me an email telling me what they did at school. I asked Michael what he did today and he said

M: I went to school.
Me: Oh yeah? What else?
M: I go on school bus
Me: Oh yeah? What else?
M: I did circle time
Me: Anything else? Did you go to an assembly (the teacher said they went to a school-wide assembly)
M: Yeah
Me: Did you make candy canes with the teacher?
M: Yeah

:) This is so stinking awesome!!

The most AMAZING breakthrough!

Last night I had the first semi-reciprocal conversation with Michael! Yeah, this sounds like no biggie, right? Not really. For months when I put him to bed, I'd ask him about his day and see what he would do/say. Usually it was "No way mama!" which recently turned to "Yeah!". But last night I asked him about school and he actually responded with spontaneous speech! I emailed his teacher to see if what he was telling me was really stuff that he did or not, but really it doesn't matter that much because he was having a conversation with me! I mostly led the discussion, but still it was amazing!

It went something like this:

Me: Did you learn about trains today at school?
M: Yeah!
Me: Did you play with sparkles (glitter)?
M: Yeah!
Me: What colors were the sparkles?
M: Red, Orange, Yellow, Green, Blue, Purple!
Me: Did you also learn about cars?
M: Yeah!
Me: What did you do with the cars?
M: Cars in a circle!
Me: You played with cars in a circle? What else did you do with the cars?
M: Down the slide!
Me: Wow what else did you do?
M: Blocks build a mountain!
Me: You built a mountain with the blocks? What else did the blocks do?
M: Going so fast!
Me: Did you throw them so they were flying so fast?
M: Yeah!
Me: Did you go outside and play?
M: Yeah
Me: After that did you come in and have a snack?
M: Yeah! Popcorn.
Me: You had popcorn? Anything else?
M: Red, Orange, Blue
Me: Were they cookies?
M: Yeah, cookies! Wheels!
Me: The cookies looked like wheels?
M: Yeah! Wheels! Tasty.
Me: What shapes were they?
M: Circles!

Then Rory started crying so I had to stop and put him to bed. I wanted to just stay and have this conversation FOREVER! <3


UPDATE!!! I just got an email from his teacher that said this!

"That’s AWESOME!  We did have popcorn!  And the red, orange and blue was a fruit roll up!  Yes, he did play with blocks and with cars.  He also played with the train.  So, he did give an account of his morning!"

*HAPPY TEARS!!!*

Picnic!

At speech therapy today, we did a pretend picnic. At first Michael was protesting it, but after a minute or two, he decided he wanted to play. It took him a bit to get the idea of playing with imaginary food, but he caught on and was playing along. He would pass me my food and laugh as I pretended to take a bite. He even pretended to take imaginary bites too! We would ask him questions like "What kind of cookies should we have for our picnic?" and he wouldn't respond. But if we told him "Oh look, chocolate chip cookies and sugar cookies! Which does mommy get?" He would gladly make a decision. It was really cute. I bought the kids a bunch of play food for Christmas and now I'm pretty excited to play with them with it. :)

This Week

Wow, this week Michael has made some amazing progress. I can't even explain it. He's starting to really articulate his needs and engage with me and the rest of the family. We still have issues with communication when it's not in the moment, but wow, I can't even tell you how proud I am of his progress!

Here's a little snippet of him doing some pretend play and interacting with the family. I've tried to get some of these new little magic moments on video but they are so fast, that it's hard to capture them.

Adding to my last post...

I took this video tonight to further explain what I was talking about in my last post. Today Michael went to a birthday party for a friend of mine's son. This is our conversation tonight about it. The video is black because I was recording it in the dark as we rocked before bed. Every night I ask him questions like this to try and get him to engage in a conversation with me about his day. Tonight was actually a very good night. Most nights he won't even respond with yes, only his favorite "no way mama".

I was explaining in a little more detail to my friend about my last post as well. She said that her daughter typically will come home and she'll ask her what she did and she'll say "I don't know". The way Michael differs is he doesn't even understand the concept of you asking about the past. In neuro-typical children you could then ask details like "Did you learn about your letters?" and they will recall some of what they did and start to talk about it. Michael would probably only respond with something like "Yeah, letters" or "No way mama".

But as I was saying in the last post, he is doing awesome if you are talking in the moment. Although I did notice his conversation is very concrete. He doesn't understand abstract concepts like "that's cute", etc. For example, he will play Angry Birds and say "Oh the red bird flew so high! One pig left! We got them all! I won 3 stars!" But if you then said "What is your favorite bird?", he'd probably respond with "No way mama, my Angry Birds!" because he didn't understand what you were asking.

It's my blog and I'll whine if I want to

So THIS blog link has been circling my Facebook. I hate blogs and posts like these. I don't know why I bother reading them but somehow I get sucked in like a freaking black hole. Every time I read something like this I feel like I just got kicked in the gut. The universe is laughing my face saying HA! your kid should be doing these things and they are not! So I get sad. Then I get irritated that people are bitching about the fact that their kids are completely normal. Then I get mad at myself because I know somewhere during my day I do the same thing in my own way and I feel like a complete hypocrite jerk. So there's my circle of self misery. Yeah, like I said, it's my blog and I'll whine if I want to.

The Present

Oh man the last few days I've been thinking a lot. I've actually typed out several blog posts and then just decided to delete them. This artist brain of mine has never been good at forming things into words. I understand concepts and feelings best. I actually think that's one reason I can understand Michael so well. Anyway, that's not the point of this post.

In all of my thinking the past few days, I've realized something about Michael. He lives completely in the present. I know that this is part of normal toddler-hood, but by this age typically they start to understand the concept of past and future. Michael doesn't. When you ask him about something he did, he can't respond. When you talk to him about something that is going to happen, he doesn't understand. If I told him we were going to Disneyland to meet Mickey Mouse tomorrow, he wouldn't wake up tomorrow and be excited to go. He would have completely forgotten about it. And if we did go to Disneyland and met Mickey Mouse, when we left and came home, if someone said to him "Did you meet Mickey Mouse?", he wouldn't excitedly tell you his tale of meeting Mickey. Most likely he'd respond with something like "Yeah, meet Mickey Mouse". Which you might think he's relaying the tale of him meeting him, but actually that's just him echoing your words.

However, when you engage in the present with him, he's really growing. He is doing so much better at interacting and sharing. He actually asks me to take a turn when playing Angry Birds on his tablet. You can engage so much with him if it is something that is happening right now. During those times, back and forth conversation is emerging and it's amazing, beautiful, and so SO exciting!

It's working! :)

In speech therapy we've really been focusing on turn taking and back and forth conversation. The other night Michael was playing Angry Birds and was not letting me near it. I asked him "Michael can I have a turn?" He sat there for a second and then said "Sure! Go ahead!" I think my jaw about hit the floor. Then we played several rounds taking turns and he'd say "Mama's turn!" then I'd play and he'd say "Michael's turn next!" He was doing so great letting me play along. This is a huge change to what we were able to do even a couple of months ago.

Just a passing thought

The day that Michael comes home from school and is able to relay to me something, anything that he did that day, I'm probably going to cry. I'm excited that he is in school, but I wish I knew what he did that day and what he enjoyed, etc. But for now, I'm just rejoicing in the fact that he was okay getting on and off the bus all by himself!

Michael's First Day of School!

Today was his first day of preschool! I had the new nanny follow the bus in the car so I could ride with him. He did great! When we got to the school I dropped him off in the classroom. He was a little uneasy but gave me a hug and let me leave without fuss. I was working when he got home but the nanny said he happily walked off the bus. :)

I sent an email to his teacher asking how his first day was. She responded super quickly with this.

Hi Lindsay-
Thanks for the email-He did GREAT!  He stayed a bit to himself at first…I got him interested in a couple of puzzles, and then he seemed interested in what the kids were doing.  He got excited about circle and even sat with the group off and on for several minutes at a time.  Snack went well too…!  He took a piece of plum (didn’t eat it, but didn’t freak out) and he ate several cheese puffs.  He never touched his cup and tried to drink water out of an open cup!
Michael had a great start!

I'm so proud of how well he did! :)

Autism Class Part 3

Oh boy sorry I was so delayed on writing this! Having time to sit down and write here can be a struggle with two kids. Anyway, last Wed was the final autism class at the hospital. I really enjoyed this one! There were a couple ladies there from parent advocacy groups that gave us a bunch of information on how to best advocate for your child. All the info out there can be overwhelming and honestly I had no idea that places like this existed to help you! They gave me a giant booklet of all sorts of resources and they also said that you can call at any time and get the info as well if you aren't sure where to look or what to do. One awesome thing the told me is that if I ever have troubles with the school system and his IEP, I can call and they will send an advocate with me to the IEP meeting. They said that almost always changes the tone of the meetings to being super helpful and on your side, lol!

The last part of the class they had a parent panel. This was just 3 moms telling their stories and a little about their struggles with autism. It was refreshing hearing stories that were similar to mine to let me know, "Hey you aren't crazy!!"

Golden Nugget

Last night was the 3rd and final Autism class at the hospital. I will write in detail about that later, but I wanted to start something that one of the mothers there suggested. Every day they write down a "golden nugget" that their child did. I think this should be applied to all areas in life, but sometimes especially when it comes to a special needs kiddo. You can get overwhelmed with the negative and it is nice to focus on something positive. So I'll start today.

Last night my when I went to pick up Michael after the class, he was playing with his tablet. He was playing a game where you pop balloons on the screen. He came up to me and said "Try pop balloon mama!" Inside I was like "WHAT?! You just shared an idea with me of something you found interesting and wanted me to experience it too!" I mean, WOW!! Serious golden nugget right there!

Two awesome things

So two awesome things happened this afternoon after we got back from his IEP.

I went to change his diaper so we could get ready to go out and find some food (daddy is out of town and we are partying!) and he was mid poop. I told him that we were going to go sit on the potty. At first he was a little nervous, but I sat him on his little potty seat and he calmed right down. I told him to go ahead and push it out. With a little push, he went in the toilet. When that happened, he jumped a little bit because he wasn't expecting the *plop* haha but then he quickly got excited and said "I DID IT!" He hopped up, closed the lid, and flushed the toilet. He was so proud of himself!

Then as we were in the car, he had a plush angry bird with him (he is recently obsessed with that game). As we were driving down the road, he faced the bird out the window and said "Angry Bird what do you see out the window? Do you see lots of houses?" He's never done that sort of pretend play/questioning before! I drove all the rest of the way to dinner with a huge smile on my face!

Michael's First IEP

Today was Michael's first IEP. It went great! I met the teacher, the ST, and the OT. They were all really wonderful ladies. There was also an aide there named Mrs. Wood (I thought that was cool, hehe). Michael came along to get acquainted with the school. He played blocks and cars with the aide while we went over the IEP. I think they have some really great goals they are going to work toward with him and I'm excited.

I'm going to just copy it down as they gave it to me, mostly so I'll have it somewhere I can't lose it but also if you want to read it. All goals are hoped to be at this level 1 year from today's date.

Functional Sensory Processing:
When given safe sensory motor experiences, sensory supports, and strategies Michael will tolerate classroom tactile materials, hands on assistance, and hand holding improving functional sensory processing from demonstrates defensive reactions (stiffening, resistance, and withdrawal) to without defensive reaction such as withdrawal or resistance on 4/5 observations as measured by bi-monthly observations and data collection by OT

Social Emotional/Behavioral:
When given opportunity to participate in classroom activities Michael will follow classroom rules and routines improving ability to participate in large and small group activities from not able to, to 80% of the time on 3/4 data days as measured by monthly teacher/classroom observational data and checklists.

Social Emotional/Behavioral:
When given a verbal prompt Michael will transition to next activity (clean-up/stop/move, etc) improving his ability to transition from one activity to another from not able to, to 80% of the time 3/4 times on data days as measured by monthly teacher/classroom data and classroom checklists.

Adaptive/Self Help:
When given the direction "time to go potty" Michael will go to the bathroom, pull down pants and sit on toilet and empty bowels/bladder improving toileting skills from emerging (sitting on toilet a few times) to independently going to bathroom and following procedure to use toilet 90% of time as measured by monthly teacher data and classroom checklist.

Adaptive/Self Help:
When given unfamiliar or undesired food (fruit/veggies) Michael will accept a small piece of food improving tolerance for undesired/non-familiar food from gagging/refusing to attempting a lick/smell/or a tiny "no thank-you bite" 90% of time on 3/4 data days as measured by monthly teacher data and classroom checklists.

Functional Fine Motor & Sensory Processing Skills:
When given scissors and cutting project with simple 1/8" bordered shapes Michael will position scissors correctly and cut out independently improving fine motor and sensory processing skills from uses two hands/lacks correct positioning & snips only to with 75% on line accuracy on 3/4 observations as measured by monthly observation and data collection by OT.

Functional Fine Motor & Sensory Processing Skills:
When given writing/drawing implement Michael will use a tripod grasp and dominant hand to hold and draw beginning pre-writing shapes (i.e. circle, cross, square) improving functional fine motor and sensory processing skills from uses pronated fisted grasp, lacks hand dominance, and beginning copy skills to on 4/5 times as measured by bi-monthly observation and data collection by OT.

Speech/Language-Expressive:
When given an appropriate classroom setting Michael will produce novel (non-echoic) responses improving expressive language from 50% of responses to 80% of responses as measured by classroom data and language logs.

Speech/Language-Receptive:
When given a classroom instruction or direction Michael will follow the direction or instructions improving receptive language from 10% accuracy (compliance) to 60% accuracy (compliance) as measured by classroom data.

Speech/Language-Social:
When given an opportunity to interact with a same-aged peer Michael will engage in a reciprocal conversation improving social language from 0 turns per conversation to 2 turns per conversation as measured by classroom data.

It Did

As I was going through my videos today I came across this one I made of Michael's 32 week ultrasound video. Cue the crying. He has made my life so much more full. <3

Another Old Video

This was a couple weeks before Michael's 2nd birthday. I have no idea why he was so against the card with the hat on it. But I was impressed with his matching skills! :) He's always been awesome at that sort of thing. I still can't believe how much he has grown verbally since this video though! We are making awesome progress!

Autism Class Part 2

So last night I went to part 2 of 3 of the autism class. This time they had a ST and two OT's come to talk to us. One of the OT's was specifically addressing feeding issues. This week was really informative!

Starting with the ST they spoke about some ways to help your child communicate. One of the things I found interesting was they advised to speak in statements and not in questions. I actually have been doing this for some time now. I found that for Michael, direct questions would really upset him and I could see his anxiety rise when I did. So I started saying things to him in statements and he has greatly improved behavior wise. They also said this was the best way for kids who echo what you say. That way they are not repeating a question, but they are repeating a statement. Michael echos a LOT so I was glad to hear this was the way to go with this sort of thing.

They also stated that once he starts school, it might be best for him to quit private 1:1 therapy and just go with the social ST with the school. I've had a bit of anxiety about the thought I'll be dropping private therapy once he starts school so I was glad to hear that is normally what happens and really might be the best way to go.

Next up was the OT addressing feeding issues. She had a lot of really good ideas to help with trying foods. She did a fun little hands on experience for us to understand what it's like for our kiddos. She gave us a plate with a variety of different foods on it. A few of them were ethnic Asian foods which I was not familiar with. One of them I said looked like dried up worms! This really helped me put it into perspective what it is like for a kiddo seeing a new food for the first time.

Last up was another OT that addressed other general sensory issues. She talked about self help skills and teaching potty learning to ASD kids. That info was really helpful as well.

All in all, it was a really informative class. Next week will be some other ASD parents as well as some advocacy groups, some of which will educate me a little more on the laws of the school system. I can't wait to hear that!

Old Videos

Just going back through old videos today and thought I should post this. This is about where his speech was at when I contacted Birth-3. They told me everything was fine and this was normal. Right. He had about 5 other "words" that were similar sounds to this at the time. He was 18 1/2 months old here.

Michael reads CAT

This is actually the second word he has read. He read the word NO the other day. I got him reading that one on video today too but haven't uploaded it yet. I'm so proud of this kid!

Autism Class

On Wednesday night James and I went to a class at the children's hospital about Autism. It was a 3 hour class that was part 1 of 3. The next two Wednesdays we will be going back for 3 hour classes as well.

I think I must love to do research or something, because I could have taught the class! Seriously everything they went over in the class I knew already plus some. But I'm still glad I went and I'm looking forward to the next two sessions. This week they had a general overview from some guy (not sure who as we were late and missed intros) and a neuropsychologist. Next week they will have a ST and OT person there. I'm interested to hear what they have to say.

The most valuable part of going so far for me was the folder of resources they gave us. One of them being a huge handbook of all the autism resources in WA state.

Math Master

Seriously this kid blows me away! I got an ipad a couple weeks ago and have been downloading a bunch of apps for Michael to try out. This one I downloaded, you are supposed to match up the numbers. Sometimes it will match to the number and sometimes it matches to a dice version of the number. I watched in awe as he matched up the dice to the numbers by counting in his head! Watch the video and you will see what I mean.

Preschool Evaluation

Michael FINALLY had his evaluation today! It went great! They had him visit a ST, OT, and PT. He is delayed in all areas but for the gross motor, he is only slightly delayed so they aren't as concerned in that area.

For speech, they saw that we need to work on the back and forth communication more than picking up actual words so they think he will thrive with a group setting of ST rather than the 1:1 that he currently gets. I agree with this.

For fine motor, the OT said that he is left eye dominant and right handed so it can make some things harder such as reading. He was way ahead in some things such as doing puzzles and stacking blocks. She said that he does puzzles at a 5 year old level! But he has issues with sensory input and some of the instruction so they feel he would highly benefit from OT. I 100% agree with this. So they will also be helping him with self help skills, etc which is awesome!

They said that we had the option of either putting him in the autism class which is 5 days a week for longer periods or the regular special needs class that goes for only 2 days. However, they said that with his skills, they felt the autism class would be too restrictive for him. They felt that for him to build his social skills the regular class would be better. So that is what we are going to do. They said the teacher should call me and we will have a meeting to create his IEP in the next 2 to 4 weeks. Then we start school!

Just lovely

We've been on a waiting list for OT for a few months now. Well, they called with an opening today but I had to tell them to put it on hold until we know what is going on with his preschool. So they are going to call us back in about a month. That's just splendid. ~eyeroll

Now we sit around and WAIT some more! *sigh*

FINALLY a new appointment!

So after almost 2 weeks of strike, the school district is back in school! Michael's evaluation is rescheduled for this upcoming Wednesday at 10am.

I'm so upset!

So Michael's eval for preschool was finally coming up on Thursday of this week. I got a reminder call earlier today and during the message the lady said "Oh we might be going on strike and if so, the meeting will be cancelled and we will have to reschedule. You'll get a call if we strike to let you know." So of course tonight what do I get? A call stating they are going on strike tomorrow. Effing hell, of course it had to be THIS WEEK that this happens. They haven't had a strike since the 1970's and NOW is the time that it happens again. Go figure. It is MY life after all. Sigh.

Every Morning...

I feel like every morning when I drop Michael off, I'm just waiting for something to set him off. Usually it has something to do with the routine not working out the way he has planned. It can be something so small as he tries to shut the car door and it doesn't go all the way so I help him, or more commonly him needing to ring the doorbell 1 million times before we go inside. Today was no exception to this. He rang the doorbell about 20x and then when I tried to open the door, he didn't want to go in. But since I had opened the door already, it was over. He then kept asking to go back to the car. I didn't have time for that so I went inside to set his stuff down and put Rory down. Well then Rory starting screaming mama and running after me. Michael was still standing outside so I picked him up and brought him inside. He was screaming and tears were coming down his face. I gave him a tight hug and he calmed down for a second until he saw I was going back outside to my car. At that point he freaked out again. He grabbed onto the doorjamb so in order for me to close the door, I had to pry him away. I stuck him on the couch and ran as fast as I could to the door and quickly locked the handle and slammed it shut. I could hear him screaming at the top of his lungs on the other side of the door, all the way to my car. This is so frustrating and breaks my heart at the same time.

Temple Grandin

I got this in the mail yesterday from Netflix and watched it last night. James was sort of half watching it with me. I thought the movie did an amazing job at showing how she viewed the world. While she is more "severe" than Michael, I could see a lot of similarities. When the movie was over, James and I stayed up until nearly 2am talking about Michael. We talked about our hopes for him and the potential we see in him. I was very happy to hear about some of the changes that James has made in his thinking about Autism. By the end of the conversation, I was left feeling pretty hopeful for the future. And really honestly probably for the first time I felt like James and I were on the same page with him. It felt really good. :)

Checkout Lines

So a dear friend of mine who has a daughter with Autism reminded me of something today. We were discussing on a thread how sometimes you are forced to explain your situation because of how your child is acting. You don't want people to think your child is being rude. The scenario she brought up which stuck out to me is in the checkout lines at the store. The people are always trying to talk to/give treats/stickers to Michael. He doesn't take well to direct questions like that so he's always saying "NO WAY!!!" or something similar to them. I know they are just trying to be friendly and they don't understand why my kid is yelling at them. I hate that they may think he's being rude, because he doesn't understand that concept. I normally don't explain the situation, I just smile and say something to Michael to calm him down but I always leave feeling a little bit upset over the whole situation.

The Airport...part deux

Oh boy! So this experience was much different and way more stressful than the last! I was really hoping since he was such an angel when we had the last flight that he'd do the same on this one. Well he couldn't have been more opposite! We had the same setup initially with him in the stroller and Rory in the Ergo. He didn't really want to be in the stroller at first but then was okay after a minute. But when we got to security it all went downhill. All my fears of him freaking out happened. He didn't want to take his shoes off to start. Then when I had to take him out of the stroller he about flipped. He was very very upset to see the stroller and his backpack going into the xray. He was like "OH NO MY BACKPACK!!!! MAMA!!!!" Then walking through the security scanner was really fun. By this point he's screaming and crying. I walked through with Rory because they told me he couldn't go with me. He was then on the other side screaming "NO MAMA GO THAT WAY!!!" pointing back to the door. I tried to pull him through and the security man got irritated at me. Then he called on his little walkie talkie "Can we get a male assist or SOMETHING here? This kid won't go through the scanner!" Then he gave me this super annoyed look. Finally someone from security came over and they had gotten the stroller off the xray machine and had me set Rory in it. I went back through and picked him up and carried him, screaming his head off, through the machine.

I left Rory in the stroller for a minute and put his shoes on and tried to have him walk with me. He was still very upset. I figured if we could get something to distract him that would help. I found a Burger King and thought perfect, I'll get some chicken fries! He loves those things. So I get there and he's like "MAMA I NEED DRINK!!" So I grab some OJ and go to the counter to order chicken fries. The guy looks at me like I'm crazy when I ask if they have them. That must not be something they have in Utah. So I ask if they have like a 4 piece nugget. He says yes. So I say I want a 4 piece and he asks me fries or apples? I say oh I don't want a meal just the nuggets. But then he tells me they don't have them separate only with meals. So I say fine fries then. Then he gives me a bag. After I get the OJ into the kids cups, mind you Michael is screaming his head off this entire time, I look into the bag to find that the guy ONLY gave me fries! The whole point was I wanted some chicken nuggets! I growled at the guy and he finally gave me them for free.

I then tried to strap Michael in the stroller because he was not walking. As I took Rory out and put Michael in, Rory ran off and almost went behind the counter of one of the food kiosks. I caught her and ran back to Michael and he FINALLY calmed down. The rest of the plane ride he was pretty good but getting through security...phew! NOT ASD FRIENDLY!!!

The Airport

A couple days ago Michael had to go on an airplane with me. I was terrified at how he'd react having to take off his shoes and put all his stuff through security. Also, the fact that he had to get up at 5am to head the airport, I was worried he'd be a grump. But to my surprise, he was a complete angel! He rode in the stroller until we went though security and he walked right through the xray/whatever scanner with no shoes. He was a little concerned about the stuff going through the machine but nothing terrible. After that, I put Rory in the stroller and he just walked next to me, wearing his backpack. He followed me and even ran when I asked him to run. On the plane he was super excited about counting all the planes he saw on the runway. He loved takeoff and landing! He was really well behaved and played with his LeapPad on the plane and even put it away when I asked him to. I was so relieved!

Ugh!!!

So tomorrow I'm flying to Utah to visit family. I got off work at 2pm so that I'd have time to get everything packed and ready to go. Well Rory decided she wanted to be whiny all day and so I was able to get almost nothing done. I washed some clothes but here it is at 10pm and I still have nothing packed. I was trying to get the kids ready for bed at a decent hour but Michael was taking his sweet time to eat (like he always does). I told him we were taking a bath now and he kept ignoring me saying "no mama no bath!" so I finally just gave one to Rory while giving him several warnings that he needed to take one now. When it came time to get to bed, he freaked out saying "What about BATH?!!!" I told him no bath time was over and he missed it. He didn't want me to wrap him up because now his routine was messed up. He started crying and fighting me. James came over and yelled at him, tearing his leappad away from him. Part of Michael's routine is turning off his leappad himself. So this really made him freak out. I decided to grab him and wrap him in the blanket and just go rock. After about 20 minutes of him screaming and kicking, he finally calmed down. Of course, Rory was still tired and whiny and following us around. So I'm trying to take care of TWO crying children with not enough arms. I was really getting frustrated. So once Michael was calm enough, I asked him if he wanted to read his book. I knew he'd freak if I tried to put him down without reading it. He told me to get the monster book but then once I got it out he would say "no mama put away monster book!" Right as I put it away he'd cry and tell me to get the monster book! He started throwing the book so I stuck him in his crib to let him know if he did that we wouldn't read the book at all. After a minute or so I took him out and we sat down. He started up with the "Read the monster book! No put away monster book" crap for probably another 10 minutes. FINALLY he let me start reading.We normally read it 3x and then he takes the book to bed with him. We read 2x like normal but then the 3rd time all of a sudden on the 2nd page he starts yelling "MAMA!!" every time I'd try to read a word. But he wouldn't let me start up or put it away or do ANYTHING. This went on for another 5-10 minutes. Finally I just decided to read it and let him freak out while I was doing so. At least he'd probably be ok because we finished it like we are supposed to. It seemed to be working until the end when I hand him the book, he tossed it on the ground. He was mad that he did that and started crying. I put him in his crib and he stood up and cried. I was so frustrated at this point because Rory is also standing there crying her head off too. So I threw the book into the crib and didn't even kiss him goodnight. :( Normally I give him lots of butterfly and regular kisses. I left him screaming in his crib. But at this point I was ready to go punch walls. And the second I come out of the room, James says a snarky response of "I wondered when you were going to just let him do his thing". Because apparently leaving him to cry is "his thing". This was the last thing I needed to hear right after 45-50 minutes of fighting with Michael. I just wanted to throw everyone in this house against the wall right then. Then I tried to put Rory to bed and of course she isn't having any of it. So here we are at 10pm and she is still awake watching Signing Time. The airport at 5am is going to be a blast with a baby that got less than 7 hours of sleep. Can this day end already?

Back and Forth Conversation

He was doing SO WELL tonight!! :)

Jewel Train

A couple of weeks ago we bought Michael a LeapPad. He is OBSESSED with the thing. It's actually designed for 4-9 year olds but he still loves it. There is a game called Jewel Train that you basically have to figure out a puzzle of tracks to allow the train to get to the bank while collecting a few jewels. He caught on to it right away without me even explaining what to do. Version 1 had 25 levels which he learned to beat in a couple days. I bought version 2 last night which had 30 more levels and he beat the entire thing in about an hour. This video is of him doing this particular level for the first time! He amazes me how he can visualize it so easily and how quickly he completes the level!

The stink eye

So yesterday we decided to go out to dinner as a family. Michael was doing great until he was trying to eat his mac and cheese and it was falling off his fork. Once he gets frustrated like that, things go downhill. He started to smack the bowl really hard with the fork and spoon so I had to take them away. This caused him to start screaming "NO WAY MAMA! NO NO NO NO NO WAY!!!!! AHHHHHHHH!" Can you say all eyes on us? There was a lady sitting in the booth behind us that James said was giving him the stink eye. She had a little infant with her so you'd think she might be a little more understanding but nope. I'm learning to ignore others somewhat - but it's still a pretty hard thing for James to do. The stress level that we felt just by doing something so simple was enough to pretty much ruin our night.

Tacoma Public Schools - you are not impressing me!!

Well Michael had his preschool screening in I think it was early June. They wanted him to come back for a full evaluation on 09/15. I thought that seemed really late in the year but just left it at that. I thought between then and now I'd have received some info from the district in the mail or something. But here we are, almost the end of August and I've heard absolutely ZERO about the preschool! This makes it kind of hard to figure out my schedule and childcare if I don't know the days or hours he is attending! The only thing they gave me was a card that had our appointment date on it and a phone number to call. I called yesterday and it said they were out for the summer until today. So I called today and the lady was like "Oh let me think, it's my first day back so I'm not really thinking straight"

So she told me that "if" he qualifies (which he has to since he has a diagnosis now!) then he'd most likely be in the special ed preschool in the mornings 2 days a week from 9:30-12:00. But they also have a special autism class that he "might" qualify for (even though he was dx with an ASD apparently that doesn't automatically qualify you???) which is 5 days a week from 9-1:30.

She also told me that school starts on Sept 7th and since his eval isn't until 09/15 that he wouldn't be starting until probably early October!! WTF?! So can somebody please explain to me why he was scheduled so late for an eval if school starts the week BEFORE? It's not like this appointment was made a week ago.

I also still have no information about the special ed bus that will pick him up. I'm assuming I can tell them to pick him up/drop him off at another location w/in Tacoma other than my home but I have no idea. Because again, I know NOTHING!

I happy

So I was sitting there on the couch when all of a sudden Michael said "Hey mama, I happy!" Then he made this ridiculously cheesy grin for like a minute. I tried to get him to do it again on this video. Cracked me up and warmed my heart all in one!

Dads and Autism

I have so much I want to say about this but I can't really form coherent words right now. James said some things yesterday that really broke my heart so I will just leave you with these articles.

ARTICLE 1

ARTICLE 2

Slowly but surely!

The past couple weeks something very amazing has been happening! Rather than Michael's super negative response to EVERYTHING, he is now starting to make some positive (yes) answers to questions! You have no idea how refreshing this is. After 100 (million) "NO WAY MAMA"s you get a little burnt out!

Michael was sick and vomiting all over (seriously ALL OVER) on Monday and when I asked him if he felt sick he responded with "Yeah, I feel sick" It seems like since then the positive responses have been multiplying.

Even today when I was singing along to a game he was playing, he normally will say "NO WAY MAMA, DON'T SINGING!" but instead he said "Good singing mama, good singing!" Also we went to visit some friends and family today for a picnic and he ran up and greeted those he knew and gave them hugs! :)

This makes this mama very happy!

It's 3:30 am

I was just up for a minute because I was hot and thirsty. I decided to hop on my mommy forum and read for a second.

I came across a thread about kids asking the same questions over and over again, driving their parents crazy and it just made me want to cry. I WISH I could have him ask me questions like that. I'm sure there are plenty of things I take for granted about my kiddos too but this one just stung for me right now. :(

MY RECTANGLES!

I had a sitter over today while I was working. When I came down for break, I decided to get myself a bowl of Frosted Mini Wheats. When Michael saw them, he wanted some too. Easy enough, right? Yeah, not for this child. Nothing is ever that easy. You can't just get a bowl and pour some for him. It's always more complicated than that. So I go to get a bowl and he immediately starts freaking out at me. "No mama no bowl! Put it in the door!" So I put it away... "No mama MY bowl!!" I get it out "No way put it away!!!" Arrrrg so I just decide to try and give him some cereal. "No mama MY rectangles!" You want some cereal? "NO MY RECTANGLES!" Do you need some rectangles? "NO MAMA THOSE ARE RECTANGLES!!" Okay do you want to reach in and get some rectangles yourself? "No mama I need rectangles!!!" So by this point I'm pretty much tearing my hair out. I move to the toddler table to pour some in a bowl that is already there "No mama put it the counter!!" I put it on the counter "No way mama MY RECTANGLES!" ARRRG okay already child just take some freaking cereal! FINALLY I went over and poured some in the bowl that was at the toddler table and he accepted them and started to eat them. But this was almost 20 minutes later and after much crying and freaking out.

Story of my life right there. Every day. EXHAUSTING!

Through His Eyes

Sometimes I wonder how he views the world. Everything is always so exact and balanced. Most kids would see a play kitchen and pretend to cook or eat the treats. Instead he sees this:

"Nothing"

So something that would mean nothing to most people meant a lot to me today. It was actually such a breakthrough that I have to write about it.

Today Michael was getting into this cupboard in the toy room and trying to pull out some toys. I don't normally let him in there himself and he knows that. I went in there and said "Michael what are you doing?" He turned to me and stared at me and said "Nothing!"

My child LIED to me today!!! Normally most parents try to teach their kid not to lie. But in the case of Michael he normally doesn't have the understanding to respond with a lie. So for him to do that was HUGE! I just sat there stunned for a second when he did it!

DSM-5

So I was looking at the new DSM-5 criteria that will go into effect in 2013. CLICK HERE FOR LINK According to the proposed changes, Michael will meet the criteria and be considered to have Autism. From there they are marked with a severity level of 1, 2 or 3 (3 being the most severe). It will be interesting to see what severity he is diagnosed with in a couple of years. I am kind of glad they are changing the diagnostic criteria as a dx of PDD-NOS is very vague and I think it does need to be a little more specific.

Autism Research Institute Results

So I sent off the evaluation form from the link that is on my Autism Resources tab on my blog here. They were pretty quick to get back to me. I actually got a response back about a week from when I sent it.

He came back with a total score of +6. The way it ranges is from -45 (lowest) to +45 (highest). They broke it down to:

-Classical early infantile autism (Kanner's Syndrome): Children who score +20 or higher on the form are typically diagnosed as having classical autism.

- Autistic: The average score for a child falling to this category is -2. This score corresponds to a child diagnosed as having ASD by many professionals. Children who score -15 to +19 are typically regarded as "autistic" and the majority of children diagnosed as autistic fall w/in this category. This is where Michael's score fell.

- Autistic-like: Children who score -16 or lower are generally not regarded as truly autistic; but instead, they are often described as "autistic-like," "has many characteristics," etc.

Teaching Him Addition!

Michael is so obsessed with numbers. He's been carting around a calculator for a while now so we decided to teach him addition. He already has the early concepts down. The other day I had 2 pieces of food in one hand and 2 in the other. I had my hands split and said "How many are in this hand?" and he answered 2. Then I held out the other hand and asked him. He again answered 2. Then I pulled my hands together and said "Ok how many are there together?" He answered 4 (without counting them individually!)!

So we decided we are going to teach him how to do addition. He is doing awesome at it so far! :) What a smarty pants!

These Moments

James has been out of town all week so it has just been me and the kiddos. The other night, I took them to Target to get some much needed necessary items. On our way home I stopped and got us some crappy fast food for dinner and we went home. Rory was exhausted and had fallen asleep on the way home. I laid her down in the toddler bed and so it was just me and Michael. He sat there eating his chicken fries next to me on the couch. I took off his shoes and socks and his feet were sweaty so I started to blow on them. This put him in the biggest giggle fit I think I've ever seen him have. He was laughing so hard he could barely breathe. I just sat there soaking up the memory and reminding myself how much I love this kid. We hardly get moments between just me and him anymore and so any time I have one, I feel like I need to capture it in my head.

Then last night Rory was again asleep before he was (which is rare). I was putting him down to bed when I accidentally bumped his head. He started crying so I sat and rocked him on the glider in his room for a while. He sat there whimpering this fake little whimper for a while so I wouldn't stop holding him. Every time I went to put him to bed he would say "No, how about the chair again?" I decided there wasn't anything more important at that moment than holding him and rocking him like I used to do every night. It feels like an eternity since I have last rocked him to sleep. I finally laid him down to bed and he made me give him the required 100 million kisses, which I gladly gave. 

Moments like those are really what it's all about. <3

The things he sees

I about fell over in shock when he was eating his carrot and then said "It's a cube!" But then a few seconds later he ate a pea and said "It's a spehere!" *jaw drop* I don't know where he learned those shapes! I'm so proud of my little smarty pants!!

That was fun

Speech therapy today was fun (read my sarcasm). Michael decided he'd meltdown for 1/2 of the therapy session, laying on the floor screaming and crying. Luckily the therapist is really patient as am I and we just waited it out. Finally he decided it would be better to get up and play puzzles. But then he didn't want to leave when it was time to go so the meltdown started up again, lol! He got over it soon enough on the way home, which I was happy about.

Anyway, I told the ST about his dx and she agreed that it fit him. We talked a little about his rituals and routines and how I struggle with when I should allow him to stick to the rituals and when I should force him otherwise. She basically said to break it as much as I can but if I don't have the energy for it that day, then that's okay. Forcing him to break from his rituals can throw off his whole day so it's very hard for me to decide whether or not it is worth it to force it on him. But it makes sense that the more we force it, the more he will get used to the idea of change and that is good. I guess I will just keep taking it one day at a time. I have actively been working on this and I do see improvement - however very slowly.

My child is a genius (At the very least amazing)

So tonight after I got off of work, Michael wanted me to "play tracks and trains". He always lines them up in the same order so when the last 3 were missing, he knew it. He turned to me and held up 3 fingers and said "3 trains missing - yellow, black, black" Then we searched around for a minute and found the yellow one. Then he held up 2 fingers and said "2 trains missing - black, black". The things this kid knows amazes me!!

This child is going to make me lose my mind!

So lately Michael has been really particular about where I am at. Like I mean where I physically am at. If I am sitting and he doesn't want me to sit, he gets upset. If I am standing in the wrong spot, he gets upset. If I hand him his cup of milk in a different spot than normal, he gets really upset. This is making it extremely hard for me. Tonight he was mad at me because I was "supposed" to stand in the kitchen. Every time I would go to sit down at the table and eat dinner, he would come over and scream and cry in my face saying "no mama get up!!!" I couldn't even finish my dinner. Earlier this morning every time I tried to sit on the couch, he made me get up too. This is getting really old!! I don't know what to do about it. If I ignore it and just keep doing what I'm doing, it escalates into a meltdown. If I move, then he is ok but that makes him think he can tell me where I need to be. I don't know how I'm supposed to go about this! But one thing is for sure, it's driving me CRAZY!!

Dinner...oh my

So tonight was just a blast. When  I told Michael it was time to eat he initially refused which is normal. But after a few mins he decided it was ok to go eat. When he got to the table he was mad the plate he used for lunch was gone. He got distracted from that by this dinosaur sippy that was on the table. He had this small US flag that he had shoved in the tail before but I had taken it out earlier. He was mad about this and trying to put it back in. The dino fell a couple of times and he got so upset he started throwing the cup. So I took it away and he went into a huge meltdown.

He was screaming while James was trying to watch a movie. This was annoying him so he came in the room and started yelling at him. Of course this made him scream harder. Then James slapped his hands and flicked him in the back! I started yelling at him because that was inappropriate and completely unnecessary.

Finally after forever Michael said "I'm sorry mama" and started crying and hugged me. He was calming down and started spinning the knobs on our china hutch. James then saw and got ticked and stuck him in time out. So the screaming started back up. While he was sitting in the time out chair, James was getting into a power struggle with him. I broke in and did a diaper change to hopefully reset him. It was working until I went to sit down and eat again. Michael got mad I was not standing and started to flip out. I thought maybe if I gave him yogurt he would calm down. I got it out and he was saying "No how about plate?" I finally figured out he wanted the stupid plate he had used for lunch. I took it out of the sink and washed it off. He then asked me to put the yogurt on it and he happily ate dinner.

All this was over the course of more than an hour! I'm going to die early from this stress I think!

Sensory issues and food

This is so annoying for me. I wish I could give Michael a large variety of food. But it's like pulling teeth to get him to eat ANYTHING so I take what I can get. I always offer but 99.9% of the time he refuses. Last night I was shocked when he tried a green bean (after watching me enthusiastically shove some into my mouth). However, after he put one in his mouth, he started to gag and puked all over the place. He wasn't choking on it, he was just gagging from the sensory aspect of it. He tried, which is AWESOME but it wasn't fun cleaning up puke at the dinner table. :p

Routines

These are by far the most frustrating part of my days. Michael has set routines for things and if something is "off" from how he expected it, that's when the problems start. It can be as simple as me not standing where I'm supposed to stand while getting him a cup of milk. When I drop him off at my mother in law's in the morning, he has a routine that he does from getting out of the car, all the way until he gets in the door and sits on the couch. The problem is, he is adding new things to the routine. Before we would get out of the car and he'd run to the door and wait, then go inside and slowly sneak around the corner to the couch. Now he has to help me shut the car door, run to the door, then we have to ring the doorbell like 10x before he will go in the house. I'm just wondering when I should be allowing this or when I should force him to deal without. It does make MY life easier when I give in but I don't know if that is really the best thing for HIM.

What is PDD-NOS?

I will copy/paste the info from Autism Speaks

PDD-NOS

Diagnostic Overview
Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) is one of the autism spectrum disorders and is used to describe individuals who do not fully meet the criteria for autistic disorder or Asperger syndrome.

PDD-NOS may be thought of as “subthreshold autism," or a diagnosis one can give a person who has “atypical symptomatology.” ²  In other words, when someone has autistic characteristics but some of their symptoms are mild, or they have symptoms in one area (like social deficits), but none in another key area (like restricted, repetitive behaviors), they may be given the PDD-NOS label.

In the DSM-IV Criteria for a Diagnosis of Pervasive Developmental Disorder Not Otherwise Specified, PDD-NOS  is covered in a single paragraph, which mainly asserts what it is not:
"This category should be used when there is severe and pervasive impairment in the development of reciprocal social interaction associated with impairment in either verbal or nonverbal communication skills or with the presence of stereotyped behavior, interests, and activities, but the criteria are not met for a specific Pervasive Developmental Disorder, Schizophrenia, Schizotypal Personality Disorder, or Avoidant Personality Disorder. For example, this category includes “atypical autism” – presentations that do not meet the criteria for Autistic Disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these." ¹

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., rev.). Washington DC: Author. (Pg. 84) 

When might a person receiv a diagnosis of PDD-NOS?
That will vary, of course, but in one study, researchers found that those with PDD-NOS could be placed in one of three very different subgroups: ⁴

• A high-functioning group (24%) who resembled people with Asperger syndrome but had transient language delay or mild cognitive impairment (such that they could not receive the Asperger diagnosis which requires no speech or cognitive delay).
• A group (24%) who resembled people with autism but who had a late age of onset, or otherwise did not meet the criteria for autism.
• A group (52%) who were autistic-like, but displayed fewer stereotyped and repetitive behaviors.

PDD-NOS

So that's the official dx for now. We have a follow up in 6 months to check his development. Honestly this was the dx I was expecting. It is a relief to finally have some answers. The pedi also put us on a list for a social skills class put on by the OT.

The reason he gave him that dx and not Autism is due to the fact that he has eye contact (mostly with me or other family members - not to strangers), shows me items of interest, and is affectionate. In all other areas, he showed signs/symptoms of Autism. So basically they give the PDD-NOS dx when they meet most or have significant issues in other areas of Autism but don't fully meet all the criteria. 

Tomorrow

Tomorrow is our appointment. I'm excited and a little nervous. I mostly can't wait to hear some results.

The little things

We were at a friend's house tonight and I had pulled one of their son's puzzles out of the closet for Michael to play with. It had two pieces missing which I did worry about when I first pulled it out but thought maybe since they were not there when he first saw it, he'd be okay. Well he was fine at first but then he started to get really anxious and upset about the missing pieces. He kept saying "Two more pieces. They disappeared. Mama they play hide seek, go find them" and he'd try to pull me off the couch to go find them. This wasn't like a NT child just throwing a fit that they didn't get their way or that they wanted the puzzle, this was actually causing him serious stress and anxiety. It's the little things like this that make me have to be hyper aware of the situation at all times.

Singing and screaming

This is how Michael lets you know he disapproves of your singing ability. For some reason he cannot stand it when anyone sings. Unless it is a song he chooses and you are the designated singer. He likes to sing ABC's and Twinkle Twinkle Little Star, but apparently I am the only one allowed to do it. I tried to have all 3 of us sing tonight and he was screaming for daddy to stop it.

Speech therapy today

Another amazing thing happened today! When we were at speech therapy, the therapist was kind of doing a sing-song thing while we were doing a puzzle. I know Michael normally gets upset when I sing and he was doing the same for her. He was screaming and carrying on but then all of a sudden he stopped and said "NO no sing!!!" I was amazed! He has never been verbally specific about something like that before. He has said "no stop it!" etc before but never specifics. I am really hoping this is the start of a major breakthrough in communication!

BREAKTHROUGH!

The most amazing thing happened tonight! I told Michael that he was having chili beans for dinner. Instead of just yelling "NO WAY" at me, he said "How about yogurt?" I said ok but only if you lay down and let me change your diaper. Then he laid down! I have NEVER had him negotiate with me before! You have no idea how happy this made me!!

What NOT to do with your ASD child

DO NOT jump out from behind a wall and scare them! It will not only kill his good mood, but also piss off your wife...grrrrr!

I wish I could just explain to people.

Poor Michael. He had such a hard time today. We drove to Ellensburg to visit with James' brother and his family for their baby blessing. This meant us going to a different church than Michael is used to. We normally sit on the left hand near the back, but his brother's family had saved the very back row. It took about 5 mins just to coax him to come in the door. He finally decided it was okay to go in the door and he started toward where we normally sit in our chapel. When he realized that is not where we were all going to sit, he freaked out and ran out of the room crying. I had to go calm him down AGAIN and try to get him to come in the room. I finally got him to come back in the room and we sat down in the area we normally do at our church. He was a little nervous and still making a little bit of a scene. But things were calming down enough that I thought we'd be okay. Then came time for James to go help with the baby blessing. Michael wasn't sure what was going on and he started to scream. So I had to carry him out of the room and missed the entire blessing while he screamed in my ear. I held him in a hug and squeezed with deep pressure, telling him it was okay. Toward the end of the blessing he was calmed down enough that I stood with him in the doorway. He saw a lady standing in the doorway with her eyes shut and arms folded for the blessing. He said to me "Mama look she's sleeping! Oh no! She won't wake up!!" He was actually really upset by this and I kept telling him "No she is not sleeping she will open her eyes in a minute."

When the blessing was over and James came back, we tried to get him to do some activities like read a book or have some goldfish crackers. He started to scream at the top of his lungs so James had to take him out. They walked around the parking lot for the rest of the hour.

I felt like all eyes were on me like "Who is this lady and why can't she keep her kid in line?" "Why is she just letting him sit on the floor like that?" Nobody else had kids that were screaming and freaking out. 

Then we went to his brother's house for an afternoon get together and brunch. None of them know what is going on with Michael except my mother in-law and James. Really though, at this time only my mother in-law is paying much attention to it. Even she isn't sure about the idea of autism in him. Anyway, I hated having to sit there and explain to everyone "Don't ask him direct questions or he will get upset!"or this or that. I have so many rules and things that I do to keep the meltdowns and behavior to a minimum. But others don't know that. They just try to interact with him like they would any NT child and they just don't understand why he doesn't respond like other children do. My father in-law even said tonight that Michael was going to give him a complex because he screams at him all the time when he tries to talk to him. I said to him like I've said 100 times - HE DOES THIS TO EVERYONE!

The 'new' NO WAY MAMA!

So lately instead of yelling back at me "NO WAY MAMA!", Michael has been saying "no, no xxxx (repeating what we just said)". So for example if I say "We are going to get in the car now!" He will say "No, no get in car now" but then after the fact, he will do this deep grunting and then take in a huge breath like he used all his energy just to express that. If you wait a few seconds he will normally comply with what you ask/say as long as you don't repeat it too many times. So his saying "no" is merely just a reaction, not an actual response.



I added this video because he does the new "no way mama" in here near the beginning.

She can read my mind...

I swear Michael's speech therapist can read my mind! Last time I was thinking that speech was not being useful anymore, that very week she brought up his behavioral issues and referred me back to the pediatrician. Then this week when I was thinking that services were not being useful anymore again, wouldn't you know it, she started doing something different! She said we are now going to work more on the back and forth actions such as taking turns playing and talking. This is really exciting and I hope to see some progress because that is where we struggle the most right now!

Bragging Moment!!

My child may be behind on his social skills, but he's light years ahead of his peers in other areas! :) I love this video of him just looking at 3 objects and knowing there were 3!! That is seriously an action most kids can't do until they are kindergarten age!

Is it July 11th Yet?

I don't think time can go any slower for me the next few weeks! I just want to get in to the doc and get a formal diagnosis. It will be such a relief to tell people that my son acts a certain way because he has this condition. Not because I think he has this condition. Of course I don't only want a dx so I can explain his actions to people, but it will also open up so many doors for him therapy wise. It will be super relieving to not have to hide what I'm thinking anymore though.

Not everyone knows we are getting him evaluated and really I don't even think James really understands what the doc appt is for. I've been slipping in more info about autism in our daily conversation so he gets used to the idea. But still he knows little to nothing about PDD's in general. I had originally told him we are having an evaluation for autism but I honestly think he shoved it to the back of his mind and forgot.

Once I get a diagnosis, I can stop obsessing about every action he does. It is getting tiring but I can't help it with my anxiety issues.

This is why I struggle...

So today we were watching Signing Time and Michael was enjoying the signs. But of course anytime I started saying the words or signing, he would get upset. He'd start his whole "NO WAY MAMA!" thing. Notice how he is happy and starting to do the signs until I say something and then he just kind of shuts down. This is why I have a hard time showing him how to do anything because he completely shuts out if you try to help him.

Welcome to Holland

A friend of mine shared this little poem/story with me. Wow, it hit me perfectly. This is exactly how I've been feeling lately.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Michael and Bread

I took this video a few days ago at dinnertime. I tried to give him meatballs (which you can see on the plate) but he wouldn't touch them. I had a fork there ready for him. I tried to poke one to get him interested and he just got upset that the fork was moved from where it "belonged". So they got wasted. The only thing he ended up eating was the garlic bread. I figured I'd post this video to show the growling "no way" he has been doing lately. I was also messing with him a little bit by moving around the bread just so you could see his reaction on camera. Once things have a 'place' then you must not move them or it is really upsetting for him. Notice how when I ask him if he wants a new piece of bread he says no and growls but when I present the bread to him, he actually did want it. For him, it's all about the approach.

Michael's Haircut

Getting haircuts for Michael is more than an ordeal so we normally wait until his hair is completely out of hand. Well, it had gotten to that point today. But instead of taking him somewhere and spending $30 on a haircut, I decided to buy some trimmers and just buzz it myself. I knew he wasn't going to like it but it actually went calmer than when I take him to have it done.

The end result:

Okay mama!

*faints* Michael has been using these words in place of his "NO WAY!" sometimes!!! Oh the happiness these words fill me with! Today I went to put Michael in his car seat and I asked him, "Are you ready to get in your seat?" and instead of "NO WAY MAMA!!" I got "Okay mama!"  -- insert me jumping for joy a little inside!

Overly concerned

Lately Michael has been overly concerned with other people's things. For example, if we get in the car and he sees Rory's blanket, she better have her cup too or he gets upset. The other day he almost started crying because he was so upset that she didn't have a cup. Rory couldn't care less about not having a cup but he couldn't get over it. Then tonight while we had some dinner at Costco, he saw another little girl with a cup that looked like mine (since it was just a regular paper cup from the food court). He was really upset for a minute and almost started crying again. I asked him what was wrong and he said "That's mama's cup!!!" I had to show him that I in fact still had my cup before he would settle down. Good thing I didn't toss out my cup before that or he probably would have gone into hysterics. To him, once an object has an owner, nobody else is supposed to touch it. It's difficult to tell/show him that it's okay if I want to share my stuff with other people. Things have to be set in their perfect ways and I guess by sharing that throws too much unknown into the mix and he doesn't like it!

Memory Game

This kid has a serious memory on him! I decided to play a little game with these foam pictures we have. He did really well! In fact I was forgetting what was under them before he did, LOL!

Naming Objects

He's come so far since starting speech therapy! :)

Singing ABC's

Singing the ABC song. He loved this and kept asking to sing it again! :)

Twinkle Twinkle Little Star

This is so sweet! He was getting mad I was singing a song so I decided to switch to one I know he likes. He decided to sing along! :)

Trying to communicate

Communicating is so hard for him. :( When I ask him questions it seems to cause him such anxiety. I really hope we can get over this with therapy. It is draining to try and talk to a toddler that communicates like this all day. Some days are better than others but it is still tiring. *sigh*

Staring the differences in the face

I love when Michael gets to be around kids his age but at the same time I hate it. I hate it for me. I hate the way it makes me feel when I see his peers doing all the normal stuff they are supposed to. I hate feeling jealous that their kid can do what mine cannot. We were around a little boy only 10 days younger than Michael today and he was able to play with kids, interact, ask questions, ALL the normal stuff you'd expect a 3 year old to do. It hurts my heart to turn around and see my child and know they are having these struggles. It makes me angry that I have to have these feelings of frustration and jealousy. How it would be to have a normal conversation with my son without him refusing or yelling NO WAY or growling/grunting at me. I want to just have a conversation!! I want to be able to play with my son, not next to him.

Autism Diagnostic Criteria

I've marked the behaviors I see (or that apply) in Michael largely/specifically in RED and then the behaviors that are rare/not as apparent in BLUE

The American Psychiatric Association's Diagnostic and Statistical Manual-IV, Text Revision (DSM-IV-TR) 1 provides standardized criteria to help diagnose ASDs. 
Diagnostic Criteria for 299.00 Autistic Disorder

1. Six or more items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
   1. 1. qualitative impairment in social interaction, as manifested by at least two of the following:
         1. marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
         2. failure to develop peer relationships appropriate to developmental level
         3. a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
         4. lack of social or emotional reciprocity

1. 2. qualitative impairments in communication as manifested by at least one of the following:
      1. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
      2. in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
      3. stereotyped and repetitive use of language or idiosyncratic language
      4. lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

1. 3. restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
      1. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
      2. apparently inflexible adherence to specific, nonfunctional routines or rituals
      3. stereotyped and repetitive motor manners (e.g., hand or finger flapping or twisting, or complex whole-body movements)
      4. persistent preoccupation with parts of objects

2. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.

3. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

OT evaluation today

Michael had an evaluation with the OT today. It was filled with a bunch of "no way"s and grunting but overall it went pretty well. He did perform some of the tasks that she was trying to get him to do. They also had me fill out a sensory profile for him and she asked a bunch of questions. I don't have the full report yet since they will mail that to me but she did say they are putting me on their wait list to start OT. However, it is a 6-8 month wait so they gave me some other OT places in the area that are good as well. So now we start on figuring that all out!

I asked her about the appt with the pedi in July and what they will be looking for. She said based on what she has seen with Michael's behaviors she isn't sure he will necessarily be diagnosed with a firm diagnosis of autism. She said that he appears to fit more into the category of PDD-NOS. Which is basically "you have autism but don't meet all the strict criteria". She was basing that on the fact that he DOES make eye contact sometimes. However, his eye contact is limited. I guess we will wait and see what the pedi thinks.

Proud Mommy Moment!

Michael initiating some imaginary play!!! HUGE proud mommy moment right here!!

Celebrating Autism

This is another great article I read online today and just had to share

LINK TO ARTICLE ONLINE

Let me tell you a little about celebrating autism

Stuart Duncan

When I tell the average person that my son has Autism, they feel really bad for me. The fact is that there is a lot to celebrate.

Milestones are an achievement, not just an item on a list

When you have a child with Autism, you learn to appreciate the milestones, both big and small. Some would say that we celebrate a little too much for such little accomplishments but I’d argue that we celebrate accordingly, it’s other parents who take them for granted.

First words, learning to walk, swimming, riding a bike, reading, writing… all these things that make parents proud are far more than just steps along the way when your child has Autism… they’re cause for celebration.

Take nothing for granted

Along the same lines, but very different from milestones, is taking nothing for granted. Unless you have a child with Autism (or another disability like it), you’ll probably never know what it’s like to be lucky enough to be hugged one time a year.

Does your child look you in the eye? If your child has Autism, maybe not. Does your child give you a hug or kiss sometimes? If your child has Autism, maybe not.

You will never ever realize just how much the tiniest little things can be so extremely important until they’re not there.

Patience, more than you ever thought possible

The biggest problem with milestones is that everyone knows what they are and when they should happen so when your child is missing them, everyone says something. It’s hard, it’s oh so very hard.

After a while though, you develop a thicker skin… not just the patience required to take their “advice” a little better but also to have the patience and self confidence in knowing that if you never give up on your children, the milestones will come.

The beauty that is around us

The world around us moves pretty fast and can be so filled with sights and sounds that it turns into a bit of a blurry mess. Our mind makes it that way to keep us from becoming overwhelmed, crazy and tired. We filter through a lot of everything that goes on in our daily lives without really realizing it.

Many people, especially the children, with Autism don’t have the same filtering capabilities and often times do get overwhelmed by it all. This often results in meltdowns or even violence.

You, as the parent, become increasingly aware of the world around you because you have to, because you need to know what you are getting your child into. Loud restaurants, carnivals, movie theaters… many many places can be far too difficult for your child to be able to process and you need to be aware of that before the fact.

As you develop this ability over time, it forces you to slow down and truly appreciate the sights and smells and sounds that surround us every single day.

You go outside and there isn’t a car in the neighborhood… it’s so very peaceful. Before you likely never would have noticed, much less enjoyed that feeling of peace, because your mind builds that filter in place before you ever go out and so you don’t notice if there are cars or not.

Your child is perfect because of who they are

It isn’t until others see your child as flawed, and worse, until you start to see your own child as flawed, that you can learn what is truly important… not a disability, not a disorder, not even a gift… a child is who they are inside and who they are inside is exactly who they are supposed to be… your child.

It’s ok if no one will ever look at your child the same way you do, they’re not supposed to. Our children are amazing human beings with unlimited potential.

The difference

Celebrate the differences, not just in your child, but in yourself. For better or worse, you’ve become a better person for it, you’ve become a better parent. Your child isn’t like other children… and that seems hard to take but honestly, before your child was born, and you saw how “other children” are on the news or in movies… is that really what you wished for when you imagined having a child? For them to be like all the others?

No, none of us want our children to have it harder than anyone else, and no we don’t want our children to suffer… but many of us recognize that we can have these thoughts and these feelings while still being able to recognize and celebrate the differences.

Your child is amazing. You are amazing. Celebrate it… you’ve earned it.

Courtesy of Stuart Duncan

I'm going to copy/paste an article I read today that I really loved regarding autism & ability.

LINK TO THE ARTICLE ONLINE

Autism & ability

Success in anything doesn’t just happen.

For children with autism, learning new skills is often made more difficult because of sensory processing issues. There may be too much noise in the next room for Jill to concentrate on the directions, or Marcos may not be able to look at numbers on a computer screen and relate them to those on a page of homework. It all has to do with contingencies.

Contingencies are “if-then” relationships. All individuals with autism have some level of difficulty with contingencies. The most obvious are social contingencies, but cognitive “if-then’s” are just as important to consider. Does Ricky make the connection between Mom saying “Press down on the pedal” and the action of his foot applying pressure downward? If not, his mom can say it over and over again, and both can grow frustrated in the process.

Some of my athletes are nonverbal, but understand just about everything that is said. Others are verbal to an extent, but have enormous difficulty attending to or following verbal instructions.

It is absolutely critical to ask the following questions:
1) Is the individual a more auditory or a more visual learner?
2) Has he/she had prior experience with the words I am using right now?
3) Is he/she motivated to perform this particular activity? (Does he/she like it?)
4) If not, what would be motivating?

I call these the “PAC” abilities and they are the foundation of my assessment and programming method, the PAC Profile (www.PACProfile.com). If Rachel is having difficulty riding her bike, is it because she cannot do it, won’t do it, or some other reason?

How do we assess what is going on without drawing incorrect or unproductive conclusions? Saying she is “lazy” does not give us much help. How do you “un-lazy” somebody? Do you snap your fingers and all of a sudden they decide that they will do something? Not the kids I’ve worked with, and probably not yours either. That’s why it is so important to assess abilities first.

Alex was 11 and his mother contacted me specifically to work on bike riding skills. Dad had attempted several times to teach him, but wound up screaming at Alex instead because Alex was not learning quickly enough. If you are reading this now, stand up quick and learn to ride a unicycle while juggling. In the event that you do not master this in a week I will personally call up to berate you. Oh, and you need to be having FUN While you do it. Doesn’t sound to reinforcing, does it? Alex wanted to ride his bike; he just didn’t want to be yelled at while learning. I thought that was reasonable enough.

After about ten minutes of physical assessment, it was clear that Alex could move well. His bike riding issues were not because of physical or gross motor issues. He was highly motivated, which took care of the Adaptive area of functioning, and was great with verbal directions. Alex needed two things: time on the bike, and support from an instructor. He was riding independently within two months.

Alex learned to ride because the teaching was appropriate. The program was run at his speed and style of learning. He would frequently, and I mean frequently, ask if he was going fast enough. I told him that it was fine as long as that was the speed he wanted to go.

Eventually, he learned that the faster he pedaled the more it balanced the bike. I could have explained that to him but it wouldn’t have made sense or mattered much. Learning is an experience that requires the individual to “invest” into the process. That’s why we learn best when we’re having fun. We are automatically engaged or focused on the activity without someone telling us to “pay attention ‘cause this is important.”

The assessment is pretty straightforward. Does he/she have the physical ability to ride a bike? Is he/she motivated to ride the bike? What type of learning style does he/ she have? In chapter 6, I will provide some great exercises that can strengthen the muscle groups and movement patterns needed to ride a bike correctly. Riding a bike is also a very specific activity that requires time spent…riding a bike.

Adaptive ability is the most important aspect of functioning. If Tracey has some motor planning issues, but is determined (motivated) to ride her bike, she is going to log in a good deal of time learning to ride. As long as she stays motivated and has a good fitness program that strengthens the areas of deficit, she will learn to ride with success. For the less-motivated crowd, aka the majority of kids on the autism spectrum, we will cover some practical strategies in chapter 4.

Cognitive ability is not “smart vs. stupid”. We all have different levels of learning ability depending on the subject. I got D’s and occasionally F’s throughout math in elementary, middle, and high school only to get an “A” in statistics in college. Did I suddenly get smarter, or was the subject taught in a way that I could understand it?

Most individuals on the autism spectrum are not auditory learners. They are usually better at visual learning (having the concept or skill shown to them), and many require physical prompting or cueing to perform different movements correctly. Saying the same thing over and over is not going to be much help if the individual is not making the connection between words and action. This is where I have seen the highest amount of frustration build up on both sides (parent and child).

The best way to learn is to do. When we have the opportunity to experience learning and sort the steps out for ourselves, skill mastery comes faster and stays longer. Ironically, other skills are often compared to “learning how to ride a bike” because once you learn you “never forget.” That may be true, but we need to make sure that our children want to get back on the bike again once they’ve learned how to ride.

Courtesy of Parenting Special Needs