Father's Day in the ER

"Happy Father's Day. Your son is in the hospital"

 

    
As usual, we ride the rollercoaster! When you have a kid with a disability, this kind of thing becomes the new normal.  Robbie didn't want to go to church that Sunday morning, and since he can't speak, he acted out instead. It's like a two year old throwing a tantrum, only he's a lot taller. I got a phone call after I got out of church myself that he was in the hospital.

 

 

Prepare yourselves if you're emotional (Moms!) because Robbie starts to cry in this one. I tear up every time I see it! LOL It's even harder to watch because he rarely ever cries. The last time I saw him cry was when he had a seizure and they took him to the ER, and when I got there I saw that they had him on a stretcher in the middle of the hallway and he was crying. He hates being in the hospital. Who doesn't?

The procedure when someone in a home has a behavioral incident is usually to admit them, for days, weeks, even months. I refused. I said "No" and told them to discharge him to me. He stayed home with me for two days.

 

Here is the first video on Father's Day. Episode 35

 

 

I took him home with me, and he was not happy to wake up there. He probably thought I was going to keep him in the house all day, and he wanted to go to his day program. We had a rough morning. But he went to his program and was much happier when he got home in the afternoon. That night I had to take him to one of his many specialists. We went to a Physiatrist for his feet.

 

 

Here is day one at home, episode 36

 

 

By the second day, I was starting to lose it. It really had nothing to do with Robbie. I was stressed out about work, the phone was ringing non-stop, and I was reaching my breaking point! But that night the Psychiatrist gave Robbie the OK to go back home, which made him very happy.

The next day we had an IDT meeting and I received really good news, which made Mom very happy!

 

 

Here's the one with the good news at the end. Episode 37

 

24-Broken Things

 

 

    Years ago I went to a fancy dinner party at a friend's house. She is sort of a Martha Stewart type. Everything in her house is perfect. She loves to decorate and set a beautiful table. She cooks a gourmet meal with special place settings at the table. When I go, I am sure to use my best table manners.

 

   During dinner, a Christmas wreath hung over the buffet suddenly fell and broke one of her serving dishes. She was so shocked and upset that she couldn't even speak. I understood why she was upset, however from my perspective, broken dishes were a normal thing in my house. If it had been my house, I would have blown it off, picked up the broken pieces, and finished dinner. I probably would have even laughed and made a joke. Actually, if it was at my house, we probably would have been eating on plastic dishes or paper plates, because that's what our life was like!
  The truth was, during the years Robbie was growing up, we rarely had anyone over. The house was too much of a disaster and it was too stressful to cook for people, and the messy house was embarrassing. Robbie had broken a lot of things in the house. He slammed the doors so all the doors were broken off the hinges, he broke my kitchen cabinets, all my dishes, videos, VCR's, video cameras etc. But you know what? It taught me something. Material things just really aren't that important!

 

    I don't worship my house or my car or my things. I don't need to keep up with the Jones's. It's trivial nonsense. Remember, I do Interior Design and I am in hundreds of beautiful homes all the time. So this was a really hard lesson for me to learn. Sometimes I got depressed over it. But I had to remind myself to remember the big picture of what life is really about, my family. People are important, pillows are not! LOL
    In today's video I'll show you old video and pictures of things Robbie has broken over the years. It's not to complain, but to show other parent's of Autistic kids that they are not alone, and there are other people out there that live the same way. And my other point is, to those parents, don't be like me and wait until things are so bad and "broken" beyond repair that you can't take it anymore. Don't wait to ask for help.

23-Movie Night and Mother's Day

I don't think I've seen as many rainbows in my entire LIFE

as I have seen this month of May, 2014!

 

 

 

My son David plays baseball and many nights we were watching the sky, concerned that lightening would be on it's way. They would stop the game for a temporary downpour and then the sun would come back out, we'd see a rainbow, and resume play.

 

 

 

 

This seems to be the story of my life with Robbie. We have ups and downs, good days and bad days. He may get sick, or get violent, but the episodes quickly pass and when he smiles he can light up the whole world.

His smile is as beautiful as a rainbow!

 

 

I could get really philosophical about this, but I'll keep it light. But rainbows really are a perfect example of how we can weather through a violent storm, and then witness something truly beautiful as the sun shines once again. I am amazed even as I watch my own videos how our lives daily dip up and down, and how quickly they turn from good, to bad, to good again. Like little mini thunderstorms. But then as the clouds dissipate, a ray of sunshine peaks through, and sometimes, we have great days, as beautiful as rainbows.

 

 

 

 

 

   In our first video I take Robbie to movie night at church. This is typically for families of little kids who come and lay down on blankets and watch cartoons. But they have Robbie's favorite things:

Pizza, soda and Disney movies! So I took him. While we were inside it poured and when we left there was a big, huge, beautiful rainbow in the sky on our ride home.

 

MOVIE NIGHT

 

 

Next is Mother's Day. We had beautiful weather that day so my daughter Denise suggested we take Robbie for a ride down the shore. Now, some may say "to the beach" but in New Jersey, we say we're going "down the shore". The water's too cold in May, but he enjoyed sitting in the chair watching the waves. The whole day was wonderful until I took him home and no one was there. He got annoyed that he had to wait and didn't want to get back in the car, so he ran away. I won't tell you what happens next, you'll have to watch and see!

 

MOTHER'S DAY MISHAP

 

Like I said, life is full of rainy days, as well as sunshine and rainbows. There are ups and there a downs, literally! LOL

I hope your life gives you many rainbows!

 

22-Easter Weekend

 

    What a wacky weekend! On Good Friday Robbie was off from his day program. Being off on holidays is always a problem. As you'll see in the video, by the time the night time came things were not going well. I picked him up on Saturday morning and had to take him home for the weekend. My mission? To make him smile!
    We went for a ride and ended up having a very nice day on Saturday. We went to visit a friend and he was so happy and content there that we stayed a couple of hours. I was actually shocked that he was so happy! My sister, who had a baby not too long ago, (You'll catch a quick cameo of her husband and baby in the background) does photography, and we had her come over and take some photos. We finally got a good shot (shown above) and used it for a Thank You card for our fundraising party. (Check out our last blog to see the party video) Boy, it took a while to get a photo because he doesn't understand that we want him to smile! He's not quite smiling in the photo, but almost. I still think it's cute.

 

 

       It's funny how he falls right back into his old routine as soon as he's home. He heads right up to bed when he gets tired, and woke up early Sunday morning, grouchy and full of energy. I had to "work" singing and leading worship for church on Easter Sunday so I had to run him around and boy was it a real fiasco! Watch to see what happened.

 

21-"Mom's Birthday Fudraiser"

   

    April is Autism Awareness Month. For a couple years I had an idea in my head to invite different bands that I knew to all come together and play music in the same place to each play a set and do it as a fundraiser. So for my birthday, I rented the local Italian American club, had food donated, and invited musician friends to come play music. In between sets I taught line dances. As I was reviewing country line dances on YouTube I found a couple new ones on line, like "The Wobble". My kids told me it's the hottest new line dance (Think "The Electric Slide" and "The Macarena") that they do at weddings and Sweet 16 parties. So of course I had to learn it and teach it. It was so much fun!

Are you ready to party?! Here's the video!

     

    The theme was "Light It Up Blue" which is the big campaign by Autism Speaks. We used blue lights, blue candles and of course had blue drinks! We had a blue Hawaiian drink at the bar, blue cupcakes and blue cake pops. It was just an all around great day. Robbie came and ate and danced. If you follow my vlogs you'll know how much he loves music. When we played "Wagon Wheel" by Darius Rucker I guess he recognized the song and  went out onto the dance floor all on his own and started to dance. It was so cute! I wish I had video but I don't. I only have a couple photos someone took with their phone.

       In lieu of gifts I asked people to donate to the Hope Autism Foundation to help fund a new day program. We raised over $3,500. It was so much fun I think I'll do it every April. This first one was a trial run. But next time I'll get more elaborate and charge admission at the door, and do basket raffles etc. to raise more money.

  

 

.If you're wondering

"Who the heck is this person who does these vlogs?" LOL

Here's the video I showed at the party, the story of my life.

 

 

 

20-"Time to move"

Well it's been a couple months since my last blog. We've been really busy, but there has also been a lot going on. Robbie had to move out of his new home and he is temporarily living in an assisted living apartment. I'll explain in the video. I felt like my vlogs were working against us and giving people ammunition to use against us, so I took a break for a while. Everything has settled down and things are going O.K. for now. So, here we go. We're back!

19-"Yes or No"

 Continuing with our Throwback theme, I began in the last blog, here is some more video of Robbie in school when he was little for those who didn't get enough last time! He's just so darn cute I had to show more. ;-)

     In the last video his teachers focused on having Robbie copy them, match pictures and use the PECS (Picture exchange) to communicate. In today's episode they are teaching him how to shake his head "Yes" or "No" for desired objects.
   Sometimes Robbie seems to do really well with this and really understand, but other times I think he just does what he thinks the teacher wants him to do. I've noticed over the years that his understanding of words seems to float in and out on different days. Sometimes his receptive language is really good, and other days he doesn't seem to understand a word I say. You may have noticed in older episodes he shook his head "yes" to everything, even when I knew he really meant "no". That's why these skills always need to be reinforced every day, or else after a while he seems to lose the skill. It's a never ending journey!

    Here he is in all his blonde haired glory!

    (click the link to watch the video)

http://www.youtube.com/watch?v=IFvMOhVlB3s

 

    If you're new to our blog and you'd like to learn more about the PECS system, head on back to the older blog about the Behavior Specialist where we show the system and talk a little more about it.