Thursday, June 30, 2011

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.

Wednesday, June 29, 2011

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!

Tuesday, June 28, 2011


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!!

Monday, June 27, 2011

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!

Sunday, June 26, 2011

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!

Thursday, June 23, 2011

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.

Wednesday, June 22, 2011

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!

Sunday, June 19, 2011

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.

Saturday, June 18, 2011

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.

Wednesday, June 15, 2011

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.


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.

Sunday, June 12, 2011

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:

Friday, June 10, 2011

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! :)

Tuesday, June 7, 2011

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! :)

Saturday, June 4, 2011

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.

Thursday, June 2, 2011

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. 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. 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. 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
  1. 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.
  1. 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.

Wednesday, June 1, 2011

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


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

Autism & Ability

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


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 ( 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

Love this saying

Don’t judge my son now based on how he was years ago, or even a day ago, and don’t judge how he was a day ago based on how he is today… and don’t assume where he’ll be tomorrow either.

Drinking from a cup

So Michael just turned 3 a few days ago and is still not drinking from an open cup. I took a video which shows why. He puts his tongue inside the cup as you can see here. I'm hoping if we start OT they can help with this sort of thing because I don't know how to help him if he won't listen to me.

Frustrated Incorporated

You love the title, you know you do. Anyway, I thought this video did really well at showing how he gets upset while playing. If things aren't "just so" he will get upset. When I ask him if I can help, he gets even more upset. I didn't intervene and help in any way because if I did, that would have set him off to a complete meltdown.

He has been asking (more like dragging me) lately into the toy room to "play tracks and trains" which essentially means I watch him play. I can't touch the toys at all or he gets upset. I am happy he at least wants me to interact in some ways by watching him, but it really limits his social interaction by the ritualistic ways he plays. He can't play with other kids because if they do anything that is outside the plan he has set in his head, he gets very upset.

My attempt to get him to say yes

It wasn't working so well! We'll keep working on it though. I really hope to be able to ask him a question someday and get a YES instead of NO WAY!!