Singing and screaming

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

Speech therapy today

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

BREAKTHROUGH!

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

What NOT to do with your ASD child

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

I wish I could just explain to people.

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

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

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

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

The 'new' NO WAY MAMA!

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



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

She can read my mind...

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

Bragging Moment!!

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

Is it July 11th Yet?

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

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

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

This is why I struggle...

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

Welcome to Holland

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

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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

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

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

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

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

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

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

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

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

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

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

Michael and Bread

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

Michael's Haircut

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

The end result:

Okay mama!

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

Overly concerned

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