I can't believe I'm even saying this, but the police came and put my son in handcuffs. He may have an adult body, but mentally he is only a baby. For a mom to see her baby being taken out of a house in handcuffs is not an easy sight to see.
In our June episode we went to "Little Nicky's" house for his birthday party. Robbie had so much fun splashing in the water with the kids that Nicky's family invited us to go with them to Hoboken to play in a water park.
We were on our way to pick Robbie up and I called to say we were on our way. But the voice on the other end said "We have a problem. The police are here".
It turns out Robbie had a tantrum, and it resulted in them having to call the police. I explain in the video. Robbie was fine, and actually was amused by the whole ordeal. I was not! All I can say is after this, I think it's a good idea for all Police Departments to have adequate training about Autism.
Recently someone posted another article about the police handling people with Autism. I believe the Police Academy should bring in Behavior Specialists to train Police Officers in how to understand and handle people with Autism, and do follow up training at every Police Department.
Summer time is all about sunshine, swimming pools and rides on rollercoasters. Well, our life is always a rollercoaster! This week my daughter Patti comes to visit.
I mention my daughter Patti a lot in my videos because she is a Teacher for Autistic Children. Growing up with a brother with Autism gave her on the job training her whole life! She is exceptional at what she does. She has a natural intuition with her kids that you would probably expect.
In "Patti's Visit" she flies in from North Carolina with her husband, and on Tuesday we spent the day at the beach. She talked about teaching and mentioned how she is lucky enough to have a meeting room attached to her classroom that she has converted into a break room for her kids. They can earn breaks after doing school work, but it's also used for when they get overloaded and have behaviors and meltdowns. One of her students likes to rip things when he gets upset and she had an idea, "Maybe we could come up with alternative things he could rip when he's upset". If you saw my "Father's Day in the ER" episode, he had ripped the shirt of an aide, and when he came home with me, he ripped my shirt too.
Patti and I met with Biancha, Robbie's Behavior Specialist to brainstorm and come up with alternatives for Robbie. Patti really stressed how well her break room was working, so we are hoping that as they are building Robbie's new house, maybe we can get them to create break room. I don't know if this will happen, but it can't hurt to try. Patti and I then went shopping to come up with an idea for a "ripping toy". You'll have to watch the video to see what we came up with.
Patti's Visit
The big activity we had planned was to take Robbie to Dorney Park, which is a Water/Amusement Park in Pennsylvania. They give special passes for people with Special Needs so they don't have to wait in line! Woo hoo! But unfortunately Robbie had a seizure, and needed to see his Neurologist.
So instead of fun footage, I decided to talk about Robbie's seizures. I'm hoping there is some useful information for parents in this one. Robbie never had any seizures until he turned 17. I thought we had successfully avoided that part of Autism, but unfortunately not.
If you have a child with Autism and you're following us, I hope your child never has a seizure because it's the most frightening thing I have ever seen. But if, God forbid, it does happen some day, remember the information that I share with you in this video about meds.
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
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.
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!
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.
On Facebook, somewhere along the way someone created "Throwback Thursday". My friends like to post old photos of themselves riding tricycles when they were three years old, or high school photos of awesome big hair and shoulder pads we all had in the '80's. Well, today I thought I'd do a little throwback.
I have a friend, a young man with Cerebral Palsy, who has his own little business converting VHS tapes onto DVD's. I gave him a few tapes and found a few treasures, some of which are videos done by Robbie's old school.
Today I'm going to share some video I love of Robbie when he was about 8 years old. First, he'll sit with a teacher in the early years when they taught him how to follow directions and then rewarded him. At first they start by rewarding with food items, but as time goes on, they will move onto rewarding with "hi fives" and "good job".
Next we move onto him matching colors and pictures. This was to prepare him to use the PECS system. (Which I spoke about in episode 24) Then, in summer school his teachers worked on getting him to take it a step further. They wanted him to learn how to request his wants and needs, and wanted him to take the picture out of the book, walk over to the teacher, get her attention, and then hand her the picture to request popcorn. You'll see him get a little frustrated, but then....Booyah!!!! He gets it! You'll hear the teachers laugh in delight that he finally started to get it.
I can't wait for you to see how darn cute he was when he was little. If you thought he was cute now, wait until you see this! It was summer time and he was tan and his hair was very blonde. Too cute!
If you missed episode 24, here it is with Robbie's Behavior Specialist today. We describes what PECS (Picture Exchange System) is. If you have a child with Autism, I'm sure you're very familiar with all of this. But I share all of this mostly for people who do not have a child on the spectrum. If I didn't have a child with Autism I would have no idea what ABA was, or PECS and would have no idea how they teach kids who are non-verbal to communicate.
Do you know what a Behavior Specialist is? If you have an Autistic child you're probably familiar with the term. First of all, you need to know that Autism is diagnosed based on specific behaviors. There is no blood test for Autism. If they exhibit specific behaviors, then they fall on the spectrum of Autism. Here is a guide that is used to explain symptoms:
Since I have had Robbie, he's had Speech Therapists, OT's, PT's, LDTC's, Adapted PE, had IEP's, IHP's, used ABA, PECS.....are you following me? LOL! There is a whole language in the world of Special Ed that I have had to learn.
Robbie had a Behavior Specialist in school, and he has one again now at his Day Program and his group home. She let me videotape her while she explains what she does and her role in helping Robbie to transition into his new place and helping him to communicate. She also functions kind of as his Speech Therapist.
One thing that really confused me when Robbie first began school when he was little was that I couldn't figure out how a Speech Therapist could work with a kid if he didn't speak! I talk about this, and show how they work their miracles in this video.
