HUGE updates and news!

I know, I've almost let this blog die! But that's because things have been so busy in the past 6-8 months. But why am I back here now? Because I have some HUGE news!

Shortly after we started Michael in the special ed preschool here, his teacher told me I should apply for this Autism Waiver through Medicaid. Approx 250 kids from Utah would be selected at random to get free therapies. This is just a trial program for now to see how it works out and they may end up opening it up to the state after that. Well, I was shocked to find out about a month ago that Michael was selected!!

What does this mean for us? Well, I just had the Medicaid person come to my house yesterday for a full orientation on the benefits. Basically what it will provide, in addition to regular Medicaid services, is ABA therapy and respite care - AT NO COST!! That's approx $30,000/yr worth of therapy that we are being granted through this program. I couldn't feel more blessed to be selected.

So as soon as I fill out some more paperwork (it is the gov't after all!) then they will set me up with a therapist to come out to our house for 15 hours a week (3 hours a day M-F) and hopefully help us out with some of his problem areas. His biggest issues are rituals and the man that came said that is really the best thing ABA helps treat. So I'm stoked! For those that don't know what ABA is, here's a link to help explain. CLICK

Another amazing part of this benefit is I will get respite care! We can use one of the providers they have on a list or we can choose our own person. Up to 3 hours a week we can have a respite provider watch our kids, or we can bank them up as long as we don't use more than 6 hours in a day. I almost cried hearing this. I've been pretty much stuck with the kids since moving here and the idea of getting away for 3 hours at a time really sounds like heaven. :)

Hopefully I will be better about updating this blog in the future and on his progress!!

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.

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!

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.

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! :)

Dear Autism,

SCREW YOU!

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.  :(

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.

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.

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! :)

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

03/02/12
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.

03/05/2012
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.

03/05/2012
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.

03/05/2012
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.

03/05/2012
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.

03/02/2012
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.

03/02/2012
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.

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.

02/27/2012
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.

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.

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

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.

02/27/2012
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.

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.

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.