Monday, November 12, 2012

Call me a pessimist

Today I was scrolling along my feed on Facebook and came across this. My first thought was LUCKY??? REALLY? Call me a pessimist, but there is nothing "cool" about autism or "lucky" about it. I love my son to death, but you can bet your ass if he could have been any one of the other 87 kids out there without autism our lives would be easier. I hate how autism makes everything harder for ALL OF US. It's not just about what makes MY life harder. It's about it making HIS life harder. He is going to have struggles for his entire life. How is that lucky? How is that cool? It's not. And I hate when crap like this tries to pretend it is.

Saturday, October 27, 2012

This is why I hate going out...

So yesterday (or I guess it would be 2 days ago...hello 1am) we had Michael's IEP at the new school. It actually went just fine and in fact, I was told when they re-evaluated his speech and language, he came out slightly ABOVE AVERAGE in speech! He still has some communication and social language deficits, but his overall language is doing great! So to celebrate, we went over to Chick-fil-A to eat and then play in the play place. Well, it had been snowing so everyone and their kids decided that was the place to be. Michael has a hard time when things are chaotic with kids like that. He was sitting in one of the tube things and barking at this kid and yelling at him to go away. The kid's mom came in to check on him and he was like "that kid is being mean to me" and the mom saw him sitting in the tube barking and screaming. She left her kid and went back to her table. As someone else opened the door to the playplace (which I was sitting in), I heard her say with much attitude "Oh my gosh, there is this little boy in there that is doing xyz" and had this NASTY face on her like she couldn't believe that such an asshole child was allowed to be in the same space as her perfect child. I couldn't help it and I just snapped! I went out there and I said "Just so you know, I know you are talking about my son and I don't appreciate it! He is acting like that because he has autism and he has a hard time with social situations". Then she says to me "Oh, I was wondering if you were his mom or not". A few minutes later she came and tried to apologize but failed miserably by saying "It's good you are in here if he has autism". What the hell is that supposed to mean anyway? I just wanted to get the heck out of there before I went out and punched her in the face. Or at least dumped her drink on her head. Ugh!

Wednesday, October 24, 2012

Ritual meltdowns

Phew...just thinking about his meltdowns over his rituals gives me anxiety. It really is hard to explain to people who aren't living it what rituals and routines actually look like. It's a very OCD-like behavior (which I wonder if he also does have OCD). Basically the way I think of it, is he has a play going on in his head. When he is approached with a situation, he plays it out in his head in that split second how it will all turn out in the end. When it doesn't go as planned, the world is very scary for him so he screams until we can "reset" the situation and start over. You can imagine how frustrating this can be when combined with communication delay. Kids with autism use routines/rituals to make them feel safe in a world that makes little sense to them. For Michael, he is very literal and so things have to go in XYZ pattern every time. If you switch it up to be YXZ or XAZ for example, he doesn't understand what is happening and ends up in a fight or flight mode - aka meltdown.

Here's a couple videos I took of his meltdowns from the past couple of days.

This first one, I asked Rory to get the bucket down from the shelf. Rory wasn't listening to me so I went and did it. But in Michael's head, Rory was supposed to get it down. So it greatly upset him that I went and did it. Then I opened up one of the meat sticks and in his head I wasn't supposed to do that yet. So I had to pretend I put it back in the wrapper. You can see that as soon as I "reset" the situation, a switch went off on him and he was calm. It's pretty crazy to see that happen.

This one just happened last night. I was making some dinner and he wanted to help. He tried to push his chair over to the stove so that he could help me. However, on the way the chair got stuck. This wasn't supposed to happen. The more you interfere, the more "off" from the original scenario it is in his head and the more upset he gets. I had tried to help him by moving  stool that the chair was getting caught on. He was very upset and telling me that "It's the wrong spot, it needs to go in the right spot" This went on for almost 30 minutes until he made me move the stool back, get the chair stuck again, and he restarted the scenario. By that time, he was able to recreate a scenario where I do move the stool for him. I was then able to move the stool and he pushed his chair through the hole. Once he got to the stove, it started to get caught on the rug and the issue started all over again!

My oh my

I've surely let this blog go! Well, a lot has happened since I last posted. First of all, we moved to a new state! Michael did AMAZING with this. Prior to moving, a gutter had fallen off our house and Michael kept saying "We have a broken house. We need to get a new one." So I worked that to my advantage. James had to go to Utah 2 months before I ended up following, so I told Michael that daddy was getting us a new house. Michael took that as daddy is building a new house. He even got so excited for the moving truck that I had to make a calendar so he didn't think the truck was showing up every second. :) He loved the drive over in the moving truck with daddy and Kobun.

Getting school started here has been less than a stellar experience. First, both schools (his old and the new) were giving me wrong information on how to get his records transferred. I had to wait until the last second to get him registered because it was summertime and I guess they don't take into account that kids may move in the summer. Things got straightened out at the last second and he was able to start school on the first day with everyone else! I was really happy about that.

I'm STILL waiting to properly meet his teacher and care team. We had an IEP scheduled for the very last second before it was out of compliance and then Michael decided to start throwing up on the day we were supposed to have it. So I had to cancel and reschedule. I wanted to anyway, because the OT thought it would be appropriate to do his IEP goals by phone, even though I've never met her at all. So now his IEP is now officially out of compliance. It's scheduled for tomorrow so I guess we shall see how that goes.

Behaviorally I don't know if he's been more challenging or if I'm just getting worn out due to being home with him all day (after school and on Fridays). His routines and rituals are really getting out of hand some days. All I can really say is that I'm beyond exhausted.

Sunday, June 10, 2012

I need to mark this day in history. :)

Michael said his first "why" question today!! I still have never received a response when asking him a why question, but today he asked one to me! We were watching Pingu, which is a claymation of this little penguin. They don't talk at all so it's actually really great to help him understand nonverbal language. He turned to me and said "Mama, why are they hiding?" It took me a second to process what just happened and then my heart jumped with joy! :)

Wednesday, June 6, 2012

Dear Autism,


Screw you for breaking my heart when I see my son so frustrated
Screw you for making me want to lose my mind hearing hours of endless screaming
Screw you for the thousands of dollars I have to spend to try and make life easier for my son
Screw you for making me come to the end of my rope every single day

Screw you for making every last little thing SO.DAMN.HARD!

I'm exhausted!

I almost broke down today in a parking lot because of you, Autism. As my son sat there screaming his head off because of some ritual he was not able to complete, I looked over at the field full of children playing normally. I hate being hit in the face with you like that. I hate that my son has to be so upset over things that he shouldn't be stressing about. I just want things to be normal. I'm tired. He's tired. We're all freaking tired of it.  :(

Sunday, May 20, 2012

Sometimes I get sad

As my baby girl, Rory, is getting bigger, she is now surpassing her brother in terms of conversation and communication. She is now 28 months old, the same age Michael was when he first called me "nana" (mama). It's amazing the difference in their speech. She can tell me full sentences, which are not echoic at all in nature. She makes up silly things all the time. I am amazed just watching her. But all of this also makes me sad. It makes me sad that I feel like I'm waiting for that to begin with Michael. He is now speaking in a lot more novel speech, but it's not the same. You don't really have full conversations with him. You have to drive 90% of what he says. It's not that I don't love him for who he is, it's that I get sad because it feels like I can't know all of who is inside him. He has things inside I can tell he wants to let out and just doesn't know how. I see him struggle with it daily, and it breaks my heart.

Sunday, April 1, 2012

Self-Injurious Behavior

Lately Michael has started to do this when he is in a meltdown. He'll usually start by slapping his leg (he's been slapping the floor/table/wall for months now) but now it is also escalating to biting his kneecap and his arm and hands. The other night he bit his arm so hard that he broke skin. So I decided to get a referral to Children's Hospital to get a full evaluation since the guy at Mary Bridge was kind of a jerk who blew off a lot of his behavioral issues. I'm also going to talk to the ST and OT about it on Wednesday and see if they have any ideas how to curb this. I don't know what I can do since I can't exactly have him voice his feelings. I could tell him all day "we go here and do this if we are mad" but I am 99.9% sure he wouldn't connect the two things and be able to actually utilize whatever I taught him. Sometimes this crap is hard.

Transitions and doors.

I've said in previous posts how Michael has issues with doors. I don't think people truly understand what I'm talking about so I decided to capture one instance on video. Each time varies slightly, obviously, but this is a pretty good idea of what we go through. He was completely fine until the transition of game to getting in the door to brush his teeth, which took an entire 12 minutes. If you want to skip to the end, you'll see how quickly he gets over it once his brain catches up with the transition. He goes from completely melting down, to perfectly fine in seconds. THIS is why when the stupid man at the pizza joint told me to go outside, that I basically told him to kick rocks.

Tuesday, March 20, 2012

I have to brag for a minute

Michael is so advanced when it comes to numbers and math. This kid can add and (nearly) subtract in his head!

Tonight our conversation went like this:

M: Kobun's crazy! I'm crazy too! Two crazies!
Me: What if mama's crazy too, how many crazies?
M: Three crazies!
Me: What if daddy's crazy too, how many crazies?
M: Four crazies!

This went on and on until we hit 12. Then I asked him

Me: What if Ruger wasn't crazy anymore, how many crazies?
M: Um...10?

So he didn't get the exact answer, but he went in the right direction and was dang close! :)

Thursday, March 8, 2012

Progress Report

I forgot to update his progress report back in Nov. He'd only been in school a few weeks at that time so I forgot. I'll update the one from the other day now.

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

This is the area that we have seen the most improvement and has been a primary focus. Once his sensory system is in better shape the fine motor and other skills follow. We know now that it is  critical to give Michael extra processing time in order to increase his cooperation and flexibility. Many children like Michael have shown benefit from private sensory integrative therapy. I am happy to provide some resources. A referral can be made through your pediatrician. Desensitization brushing and deep pressure are important to help override the pain responses that light touch activates in his system.

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.

Michael sits for the duration of circle. He participates at least 75% of the time. He tends to need some "processing" time when asked to participate in a direct learning activity, usually protesting first, then coming to the table and completing the activity with minimal adult assistance.

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.

Michael knows and follows our classroom routines. He transitions independently about 70% of the time after he has a moment to process the request. He will say, "No" most of the time, but when he sees his classmates cleaning up/lining up/etc he will transition on his own.

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.

Michael will go into the bathroom, but will not attempt to pull down his pants - he continues to be resistive.

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.

He requests all of our food items. He will allow them to be on his place mat and will take a "no thank-you" (tiny bit) depending on the food. He always requests water and has been drinking several sips from the paper cup!

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.

Michael has made much process in his following of the routine, management of the sensory environment, and cooperation. Although his tendency is to greet each direction with "no" when given a little extra processing time he is now complying with the majority of requests and tasks. I have been treating his severe tactile defensiveness with desensitization brushing technique. He truly enjoys it and it has made a significant difference in his ability to tolerate washing his hands, using tools, playing with sensory materials, etc. I would be happy to teach his parents the technique on any Tuesday or Friday afternoon. It is delightful to see Michael smiling and laughing. He is so bright. His fine motor is slowly improving as he is now able to tolerate the tools. His cutting is still at the snipping stage thus he has not made much progress towards cutting out shapes. But truly he is progressing nicely and once his sensory system is in better shape the fine motor will quickly respond. He adores puzzles.

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.

Michael is showing more willingness to use pencils and crayons. He continues to switch hands and does not yet have a mature grasp. He knows his letters and numbers and can imitate a circle and a square, but not yet a cross.

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.

Michael continues to bloom in preschool. A recent inventory of his language indicates that 72% of his comments are non-echoic. This is wonderful progress and indicates that he is becoming more independent in his verbal output.

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.

Michael is very compliant with classroom directions and instructions. He requires minimal support and reminders to comply with classroom-based directions.

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.

He was observed taking two conversational turns with a peer approximately two weeks ago. When engaged in a high interest activity (building with Legos), he was able to take two conversational turns with a supportive adult (me) on multiple occasions. He is becoming more willing to engage with others, but this interest is typically seen when the activity is highly motivating for Michael and the conversational partner is dedicated to keeping Michael engaged.

Wednesday, March 7, 2012

Talked to the ST today

I told her about the conference with Michael's school and the suggestion for OT. She said that she doesn't think he should completely stop ST, but she thinks it might be good for him to put a hold on it for 6-8 weeks while he does some intensive SI. She gave me a card to an OT she recommends. So I'll be calling them and see where we can go from here.

Tuesday, March 6, 2012

First Parent Conference

Today was the first time since Michael started school that I've been able to attend a parent conference. It went pretty well. I really feel like his teacher, ST, and OT know Michael really well. The things they struggle with at school sound like the exact things we struggle with at home (no surprise!). Most the conference was the OT going over Michael's sensory needs. She actually told me that he is the most severely tactile defensive child she has ever worked with. She suggested we get him into sensory integration therapy. We then talked about how I was toying with the idea of dropping speech to pick up OT because I can't really afford both therapies. They didn't really recommend I do that as they also feel he still needs speech. So I'm not sure. They said there are low cost/no cost options out there for SI but they don't really recommend them for children like Michael because he needs a very experienced OT to work with. So right now I'm not sure what we will do. I might talk to the ST on Wed about what she thinks. I know she said a comment about seeing speech ending in the foreseeable future. Maybe I should put ourselves on a wait list now just in case.

They also talked about how most kids gain skills at a gradual pace, but Michael seems to plateau and then just JUMP to the next level. I noticed that as well. It's like one day something will click and he will just take off in that one skill, but then he will be stuck there for a while. They did however comment on how he is very smart and has great cognitive abilities. :)

Overall, he has grown leaps and bounds since starting school! I can't wait to see how far we are by the end of this year. And then we have 1 more year. I hope next year he has the same teacher and team of professionals because these guys are great.

Then at the end of the conference, the OT showed me how to do the wilbarger brushing protocol and joint compressions. It was a bit awkward when she had me do them on her, especially when she lifted up her outer shirt and I had to brush her under shirt, HA! According to her though, I am a natural. ;)

Meltdown over diapers

This is a fairly long video and I don't really expect everyone to watch it all the way through, but it's a pretty great example of Michael getting frustrated to the point of meltdown. This is actually pretty tame, too.

I left to the store the other day and James was home with the kids. He asked Michael to get a diaper with a number 5 on it, so he could change Rory. The diapers were stuck in that stupid plastic wrapping and he couldn't get it out. He had however, already decided in his head how it was supposed to play out, and since it was not doing so in that order, the world came to an end.

I don't know any other child that would freak out so horribly over not being able to get a diaper out. Most children would whine and tantrum to not even help! He was happy to help, but so frustrated with the situation from there on out, that he melted down. When it gets like this, we struggle with just doing it for him and dealing with an all out scream fest for 5 minutes, or dealing with 20 minutes of screaming and frustration so he can learn to do it himself. This happens with EVERYTHING. From getting cups, to opening doors (HUGE one there!!!), to getting his jacket on and off, to taking his shoes off... you get the idea.

If he would just let us show him how or help that would be amazing. But no, the whole thing has already played out in his head of him doing it ALONE, so he will not accept help. He has a hard time understanding verbal help as well so that is not really helpful. It just stresses him out more, because he has a hard time still with receptive language, especially when he is so focused on another task.

If you have the time to watch the whole thing, I recommend it.

Wednesday, February 29, 2012

Those are words I haven't heard yet.

Today speech therapy went awesome! It went so awesome the speech therapist said a few times "who is this child you brought today?" I wasn't sure myself! Then she said something I have not heard yet. She said, "If we have many more days like this, we might just say he doesn't need therapy anymore!" WHAT?! WOW! I never thought I'd hear the day when they would say those words. I know this is just ONE day out of many, but it's a start! I have noticed he has done really well the past couple of weeks. I only hope it continues on this path. :)

Friday, February 24, 2012

Just wanted to add this.

My husband wrote a blog about our experience yesterday as well. I really liked what he wrote about our general struggles with autism. I liked it so much I'm posting it here too.

"As a three-year old who has social and communicative delays, my son cannot always articulate his needs, and many times, he cannot get past something being done in the proper order, according to his 3-year old mind.  As his father, I have learned to deal with his autistic behavior and roll with his meltdowns and rituals.  Once he has something figured out in his head, nothing may deviate from it.  Otherwise, he experiences what my wife and I call a boxing match in his head.  Until he can work through the problem in that insanely wired head of his, the world as he knows it comes to an abrupt end.  I don’t expect anyone without an autistic child to understand.  A good example of our daily meltdowns would be going through doors.  He must open the door himself.  If it is too heavy to open, he freaks out.  If you try to help him, he freaks out.  If you try to open the door and walk through first, he freaks out.  Oftentimes, it is a meltdown waiting to happen.  The irony is that the only way to get him over it is to get him out doing it as much as possible.  You don’t lock a socially deficient child away; you get them out amongst people.  Even if they melt down, it is something you have to deal with in order to socialize them.  The same goes with doors, drink cups, forks, knives, getting into and out of a car seat, taking him to the park, eating dinner, going to sleep, waking up, brushing teeth, reading a story, changing a diaper, and on and on.  Everything is a ritual, and everything must be narrated ad nauseam or you risk a meltdown.  It is difficult.  It is especially difficult in a dynamic environment, where things are happening around you that you have no control over.  Interacting with other people, going to restaurants, and even walking through a parking lot brings around a lot of variables that we, as parents of autistic children, just cannot account for.  We are especially in tune with our children, but we aren’t perfect.  You surely aren’t perfect, so you can’t expect us to be… except we are more aware of our child’s surroundings than 90% of parents with “normal” children are.  Still, we cannot always be on guard 100% of the time."

Thursday, February 23, 2012

It finally happened.

Tonight we went to a surprise birthday party for a friend of ours at Alfy's pizza. Michael was in a pretty good mood and actually managed to make it through the door without completely freaking out. Once we got inside, he sat down on the waiting area bench and made himself comfortable. He didn't really want to move from there so when we started toward the party room in the back, we thought it might excite him if he could pick his drink and carry it back to the room. This worked for all of 3.5 seconds. He picked his drink and then was carrying it around, spilling it everywhere. Not only was the spilling itself making him upset, but also us trying to help him stop spilling was making it worse. This led to an all out meltdown. I had Rory and 100 other baby items such as blankets, sippy cups, and treat cups in my hands so I took them back to the party room while James tried to deal with Michael. He ended up taking him outside twice. A few minutes later he came back in with him and got all the way to the party room before he was startled by a person welcoming him into the room. He flipped out and screamed all the way back to the door. I followed him out and picked him up. He was screaming loud enough at this point that probably everyone there could hear him a mile away. I went to the furthest table of the restaurant, away from as many people as possible and tried to hug him tightly. This is when the fun began.

There was an older guy, probably in his 60's that was sitting a few tables down. I saw him motioning me to take Michael outside, which I wasn't about ready to do. Michael FLIPS out when we deal with doors. It would be pointless because it would all start up again dealing with getting in the doors. So I just ignored the guy. A few seconds later, he came up to me and told me I needed to take him outside. I said I wasn't going to do that and that my son could not help his screaming. He kept badgering me telling me it was "disrespectful" for me to bring my son out in public if he was going to scream like that. He told me that he belonged in the pit they had there for children (mind you this pit was closer to his table than I was currently sitting!) I wasn't about ready to bring my already overwhelmed son into a pit full of chaos and children. That would not help him calm down one bit. He told me then that if I didn't take my son outside, or to the bathrooms, or as far away from him as I possibly could, that he was going to complain to the management and tell them to make me leave. I looked him straight into the eye and said "DO IT!"

One of the friends from our party asked if he was asking me to leave and I told her that he was and that he went to complain to management. They went back and told James what was going on and that's when he came out to meet the guy. By that time, the guy was talking to the manager or whoever it was that was in charge at the moment. The guy again told us that we were being disrespectful for bringing our child out to a place where he was trying to have a "quiet" evening. He said that "children need to be trained to not cry in public". We told him my son has Autism and he can't control it. He said "I don't even know what that is! You can't use that as an excuse for him to bother me during my dinner!" James said "Well if you don't know what Autism is, you really have no place to be telling me anything on the matter now do you?!" He was probably 2 inches from the guy's face at this point, but surprisingly restraining himself.

I have to hand it to the guy that worked at Alfy's. He was completely understanding and basically told the guy we have every right to be there just as he does. Then another parent from the child pit came up to me and said "Just so you know, none of us mind your child screaming at all". Basically everyone in the establishment was on our side against this one A-hole. I was so riled up and upset by the end of this that I was shaking. Especially because he freaked Michael out so bad that he had cowered into a corner under a candy machine. Who does that to a 3 year old? Even if Michael didn't have Autism, he had no right to treat us that way!

Saturday, February 4, 2012


Tonight as I was rocking Michael before bed I asked him how old he was. He told me "I'm 3!" then I asked how old Rory was and he said "She's 2!". He sat there quiet for a second or two then said "What's your number mama?" I was shocked! :) Then he said "What's daddy's number?" That was awesome!

Friday, February 3, 2012

More in depth

Michael has been doing amazing at telling me about his day. Last night I was seeing if he could take it further, and he really blew me away! :) I was getting some extreme detail about his day. I had to work it out of him, but he was doing it! He told me about some story they read in class about kids and a bear. He told me the kids in the story went outside to play and were sad because they fell down. A big bear came and gave them hugs. I have no idea how accurate that was of the actual story, but I still thought it was awesome!

Oh and I have a pic I took a couple weeks ago I meant to post on here. He lined up all the play food, labels out. He lines things up less often, but he will still surprise me here and there with it!

Tuesday, January 24, 2012


Apparently this week or sometime here recently, a study was done on how the DSM5 is going to affect the world of Autism. Basically the study showed that a huge majority of those dx on the spectrum will no longer be considered to have Autism. I had reviewed the changes earlier last year but didn't really go over all the details. This worried me a bit so I took a closer look. In some ways, the new criteria will be *better* for Michael, but there is one criteria that has to be met which I'm worried about. When Michael was dx past July, one of the main reasons he was dx with PDD-NOS and not Autism was due to the fact he *does* make eye contact. However, it's mostly with those close to him. The speech therapist noted in her records that his eye contact is poor.
This, however is the exact requirement and the only one I'm afraid the doc might say he doesn't meet which would completely boot him off the spectrum:

 2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.

I'm not an expert on nonverbal communication in young kids so other than the eye contact, I don't know what they would be looking for!

Here are the full proposed changes. I'll bold the ones that I KNOW he meets.

Autism Spectrum Disorder

Must meet criteria A, B, C, and D:

A.    Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
1.     Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2.     Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3.     Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and  in making friends  to an apparent absence of interest in people
B.    Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of  the following:
1.     Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases). 
2.     Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3.     Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4.     Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
C.    Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

D.         Symptoms together limit and impair everyday functioning.

It seems a bit insane to me that he would completely lose his dx based on a simple thing as him giving me eye contact. That basically downplays the real meat of his issues!

Thursday, January 5, 2012

Conversation with Michael

Kind of a long video, but I love listening to it. He's engaging in conversation so well now, especially right before he goes to bed.

Wednesday, January 4, 2012

Spontaneous something or other!

Last night I was sitting on the couch when Michael out of nowhere blurted out "We did puzzles!" I knew from the email from his teacher they did a big train puzzle today at school. I asked him who he did the puzzle with and he started to name off some of his classmates. I asked him who was his friend in his class and he named off all his classmates, teacher, and her assistant!

Then today at speech therapy, I told the ST how he did that so she was really trying to engage him in conversation. He was doing so amazingly well. He told her what he got for Christmas, his classmates names, and when she asked if we still had our Christmas tree, he responded "Yeah! It's on the grass!" (lol it IS on the grass still since James tossed it there). Then when we got to the car, he immediately started telling me (super excitedly) that we just did 2 puzzles in ST, "We did the house puzzle and animal puzzle! I did them all!" I asked him which was his favorite and he responded with "The house puzzle!" He has never spontaneously talked about something that happened like that before. He's been getting really excited to tell me about his day while he is being rocked before bed. Now I guess he realized he can tell me these things ANY time, not just right before I lay him down. <3