Getting ready for Halloween

We are getting ready for Halloween already. I believe that Halloween should last at least one entire month. Josh chose his costume.

Josh is afraid of everything this year (did I tell you guys about the zombie mask and my accidental scarring of Josh?). He also believes that sometimes I am a vampire. Sometimes he points at my teeth and insists they are vampire teeth. Other times he thinks they are normal. So our house is pretty tame this year. He is afraid of blood, bugs, bats, rats, but interestingly, does not mind skeletons. In fact, he has been hiding toys under his pillow to sleep with and this is what I found under there this morning:

Very weird what does and does not scare this kid.

The funny and the fury

My little boy is so funny. He has such a great sense of humor and is such a tease I wonder what he would say if he could. Recently, I will ask him, "Josh, I am missing something" and pucker my lips innocently, "what could it be? I am missing something". And he will kiss me. The other day I said it, "I am missing something Josh, what am I missing?" and he turned to me with a mischievous grin and tapped his temple. I immediately started laughing and tickling him. "You think your mother is missing her brain?! I'll show you!" So you see, I have been feeling great because he is so funny and wonderful. At the same time, children have been noticing that Josh is different and have began talking about it. This is especially frustrating because to me I am seeing how wonderful and fun he is and this is the time that they are singling him out and labeling him. There have been good and bad times with this but I am trying to make them better. One boy (about 7) watched us while we were in line at a store. Eventually he looked at me and asked, "Was your son born like this?" It kind of hurt because I thought we were "passing" as normal. But I was so proud of that boy. He asked the right question, and after he got his answer he continued talking to me, treating us as he would have anyone else. I still cried later, but this sort of thing is hard not to cry about even when it is good. Then yesterday, we were heading into a store and a group of people were selling things outside of the store. A little girl (about 8) yells, "I know him! I know that boy! He goes to my school! He's one of the handicappeds!" It stuck with me during the whole store. I was annoyed by everyone and everything. The bagger bagged our bananas and canned soup together so by the time we got them into the car they were bruised. I left Josh in the car with Sharon to go complain about it. I was so bugged I couldn't let it go. Sharon had the car outside the store. I had to walk by the little girl and by the time I had the door handle in my hand I knew I couldn't let it go. Barely aware of my choice I realized I was walking towards the girl and suddenly I was kneeling in front of her. "I know you are young and do not know when you say hurtful things sometimes but you are NEVER to call my son handicapped again. If I called you by something you didn't do well it would hurt your feelings right? So when you call my son by what he doesn't do well it hurts his feelings. Do not call him handicapped okay?" I tried to finish by telling her she needs to call him by his name but her father was looking mortified by now and asking her what she said and I felt my face crumpling. So I walked to the car, crying about an 8 year old. Not my proudest moment. But honestly, my son is really amazing. Why can't everyone see it too? He is more than his diagnosis. And why does it bother me so much? So petty. More lessons in patience and loving others. It is funny that my mother always said that was something I am good with and yet I have to learn it over and over. Practice makes perfect I guess.

Bored? I have the remedy!

First, let me introduce you to Sweet Brown: What?! You have never heard Autotune?! If you haven't met Antoine, you may be living under a rock but he is still my favorite. First watch the report, , then watch the autotune. Bwah-ha-ha-ha! I am so glad you have been living under a rock so I could experience that again. He is the best. And for those of you who enjoy Disney and the hood, there is Beauty and the Beat. If you look closely, you will see both Sweet Brown and Antoine make an appearance. Had fun but wish there was a little more Korean flavor? Go Gangnam Style! See now, that was fun! Now share! What youtube-age have you been obsessed with recently?

I have been heard!

There are days that I feel that I could yell and scream and I would still never be heard. I feel like a version of Mr. Cellophane: "If someone stood up in a crowd and raised his voice up way out loud and waved his arm and shook his leg, you'd notice him. If someone in the movie show yelled, "Fire, in the second row this whole place is a powder keg!" You'd notice him.....Unless of course, that personage should be invisible, inconsequential me." But not today. I posted my frustrations about voice choices for my son's speech app, proloquo2go, on a blog for parents of children with disabilities. Honestly, I was just hoping one of them had more technology experience and could give me advice or at least empathy. But no, the answer I received was from Laura Pope the networking and social media employee of assistiveware, the maker of proloquo2go! She apologized for my frustrations and gave me a link to new voices! I am so thankful to be heard. It seems like such a little thing, a voice, but it is the only one he has and it shouldn't sound like a robot. Thank you Proloquo2Go! Thank you for going out of your way to listen and to give people what they need!

Behavior

I am happy to report that the Behaviorist is a miracle worker! After a few short months, she took what was once a nightmare and is turning it around. Getting ready for the day and for bed are no longer chores. Josh does them almost without complaint and with very little problems (although he still does bite his toothbrush so I can't brush his teeth and will occasionally refuse to put his clothes on). All of this was accomplished using an alarm on my phone, a written routine on his ipad, and the piece de resistance: reading one book at the beginning of the routine. That's it! That one book settles him down and gets him in the bedtime/getting ready mode. It focuses him. Amazing. It is like night and day I tell you. Now we just need to work on going to stores. Sadly, although he is doing better at home, it sounds like he is doing worse in school. He has had 2 accidents in the past 2 days, calls my name, and needs extra hugs and reassurances from the teachers. :( Luckily I was able to call his behaviorist today and begin working on these things to help him out. I am so blessed to have so much help. I know he misses his mommy but with guidance and help I know we can make it through this.

Been waiting to hear these things....

So Josh and I will play on his ipad program so he can see different areas that he does not regularly use. One such time we went to "Friend Chat". He had fun pressing buttons and listening to what they said. Then he pressed, "friend". He looked at me, pressed it again, and pointed at me then him. "I'm your friend?" (he nods yes). "Of course I'm your friend! You are my friend!" Then he presses, "I like you" and gives me a hug. "Oh buddy, I like you too. I like you so much that I love you!" (nods his head yes). We don't get as many chances for him to express himself as other kids. He can't say exactly what he means when he wants to, but we are getting closer. I am so glad that we have the ipad and that he can begin to express all of these things that I have been waiting to hear. By the way, I am well aware that "friendship" is not what parents are going for. However, in our situation, I am his playmate, protector, confidant, interpreter,and advocate as well as his disciplinarian, caretaker, etc. If that does not make us friends I don't know what does.

Josh's birthday 2012

Josh is obsessed with superheroes right now so of course we needed to have a superhero themed 6th birthday party. I didn't want to spend a million dollars and so I searched pintrest and the internet for some good ideas. There was a LOT of preparation involved, more than a weeks worth. Tyler often said, "Does this boy know how much you love him?" as I was bent over something at midnight trying to finish it. "Of course he doesn't. He is only 6. He can't imagine how much I love him." In the end it was all worth it. We invited cousins, Brooklyn, and some kids from church (first time for this but I think it worked out). As they arrived, they got to get their pictures taken in front of the backdrop I made. If they did not have a costume or wanted to switch it up we had a basket of dress up items.(There were almost a million pictures, the kids kept asking me to take more, so here are the best ones)

Then we decorated masks and played pin the cape on Batman. Sadly I do not have pictures of these. The kids loved our cardboard Batman. They ended up beating him to death in the end so we don't have pictures of him either. Then we had the pinata. It was a little heavy and it only made it through a couple of good whacks but the kids had fun anyway.

Then we had cupcakes. Be amazed, be very amazed. I spent about 3 1/3 hours making these toppers. They are made out of candy melts.

I didn't actually get pictures of him blowing out candles because I ran out of battery on my camera. Technically, the cupcake picture is a picture of the leftover cupcakes. It was a great party though.

More zoo silliness

I am not sure if I have explained why we went to the zoo so much this summer. Josh has had appointments in SLC every week or every other week. My wonderful mother, who works until 8am would pick us up as soon after 8 as possible and drive us to the zoo. The zoo opens at 9 so we would be one of the first ones there. We would stay for a couple hours then go to Josh's appointment. Most of the time she even stayed and drove us back home, although once Josh and I had a TRAX/Frontrunner adventure. This meant that my sweet mother was awake for WAY longer than she normally is, all to help me out and spend quality time with us in the process. I have the greatest mom.

Because of these guys hanging from the ceiling, Josh will not enter the Rocky Shores building even though you can get an amazing view of the animals swimming underwater. I guess I can't blame him, when you are walking, they kinda look like they are about to swoop down on you.