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.
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.
Robbie has two older sisters. Patti and Denise are twins and they are four and a half years older than Robbie. He was the baby in the family for five years until my son David was born . They have a special bond that I will talk about in the video. I won't say much here, I'll just let you watch.
Patti (the one in blue on the left) is now a Special Ed teacher. Growing up with Robbie gave her a heart for kids with Special Needs and she's a great teacher. She moved to the Carolinas over the summer. She got great training here in New Jersey working at Robbie's old school, and now she's down there spreading the love and teaching a class of 9 Autistic kids. Denise is still nearby, and you'll see her appear in some of our videos, and how much Robbie smiles when he sees her.
In today's video, I pulled out a few videos that were on my phone to show you how cute they are together.
I hope this one puts a smile on your face for the day today! :-)
Robbie has been to too many Doctors. When he was little, if he headed toward a medical building and the double doors automatically opened, he turned and ran away, lickity split! He was tired of being poked and prodded. I don't blame him.
We avoided medications as long as we could. But then, as stories would appear that people found miracle "cures" for their kids with Autism, I felt guilty. So I tried giving him a few things like a vitamin therapy from California, which made him so hyper he was banging off the walls. It wasn't until he had a seizure at 17 that I began to medicate him for the seizures, and the Neurologist also gave him something for his moods. When I look back now at old movies, I can't believe how much he has calmed down. You'll see the difference too.
In the first video, we go visit two Doctors. I can't really bring the camera into the Doctor's office, but I went as far as the waiting room. Waiting room....waiting...ha ha ha! Autistic kids don't wait! Any Mom of an Autistic child will know that waiting is almost impossible! You wouldn't believe what I have gone through in waiting rooms. I'll explain in this video.
Episode 18 "Doctor, Doctor"
In this next video, I explain what "stimming" is, for those of you that don't live in the land of Autism like some of us do. I honestly forgot how bad the stimming was, and I'm so glad I have some old home movies of this.
This particular day, when Robbie was 15 years old, he was so hyper, he was literally hyperventilating. I'm glad I can show you what he was like before meds. This is for any other parents out there who are afraid to medicate their kids. I was afraid to too. I didn't know what the side effects would be, and Doctors literally admitted to me they didn't know what to do. Reassuring, isn't it? But they really have helped.
Episode 19 "Stimming"
I have other home movies on VHS tapes of when he was much younger. (and soooooo adorable I may add) As soon as I figure out how to get it all transferred onto my computer, I will make YouTube videos and post it to another blog.
This was New Year's Day, and we were about to get a snow storm in New Jersey. Every time it's going to snow, everyone panics and runs to the store for bread and milk! It's kind of annoying because I don't panic, but I really did need bread and I hate when I go and the parking lot is full, and there's no bread left! So I am laughing in the video, but truly it's Jersey sarcasm. ;-)
When we get in the car, I do a parody of my favorite YouTube video of "Bread and Milk". If you're from the North East you'll find it hilarious. If you haven't seen it before, here it is.
When we were in the store, I decided it was time for Robbie to get a haircut. I cut it myself. I will explain why in the video. My daughter Patti (the one who I talk about who is now a Special Ed teacher) thinks I do a lousy job, LOL, so sometimes she does it.
In all of Robbie's 24 years I never gave him a birthday party, except for ones at home with family. I explain why in this video. Today, I went to his day program to give him a party. Unlike school and his old day program, this place understands people with Autism and how they have a lot of trouble with being off from their daily routine. So they understand how important it is to NOT close for a week for the holidays! So happily Robbie got to go spend the day at his program on his birthday, two days after Christmas. He was such a happy guy that day!
After pizza and cake they all went swimming, which they do every Friday. Robbie loves the water. I think he would live in the water if he could! He frolicked and splashed to his heart's delight.
His new recliner was delivered that afternoon. At first they wanted to deliver it in the morning, but I told them I specifically requested delivery in the afternoon because no one would be at the house in the morning. I didn't want to say no "staff" would be there, because after the experience at Macy's, I didn't want there to be a problem. At first they were going to change the delivery to next week, but after I told them it was a present for Robbie's birthday, she put me on hold, came back on the phone, and said the chair would be delivered that afternoon. Woo hoo!
He's not smiling in this picture, but watch the video and you'll see how happy he was with his new recliner! For dinner, his old roommate came to visit along with his old aide from the group home he used to live at.
They both miss Robbie. I was nervous for him to see them, because it might confuse him, and he may think he is supposed to go home with them. But he was fine, and happy to come home to his new chair. Whew!
Here's the video of the day. :-)
If you missed the story about the recliner, here is Episode 4.
Christmas Eve was a good day. He had spent the day Monday at his day program and was very happy that his life was getting back to normal. I picked him up and took him out and he was all smiles. We listened to Christmas music in the car and did a virtual Christmas Card for our friends on Facebook who were supporting us and praying for us during the month of December. Then we went to the children's service at church, because that's the one where you can be noisy!
Before the service I took Robbie to the bathroom, and realized that's something people never think about.. I have to take him into the men's room when we are out in public, if they don't have a unisex handicapped bathroom. They make changing tables in bathrooms for moms with babies, but they don't make bathrooms for moms with grown up sons!
Christmas Day
On Christmas day I had to wrap gifts in the morning because I had no time to do it during the week. (my youngest is a teenager and doesn't get up early anymore) I went to pick Robbie up and the woman he doesn't like was working. Oh no. He was grumpy. Luckily we went to Grandma's place and his sister Denise was there and he got in a good mood pretty quickly. You'll see how much he enjoys opening presents.....not! It's a chore for him, but he tolerates it. And then...well, you'll see. He cracks us up.
This episode shows the beginning and the end of my day. I went to work and started out showing you how I usually start my day. I usually read my bible and pray in the car listening to worship music. It's my comfort zone, where I get my peace. Later that afternoon when I stayed with Robbie one of the staff said she wasn't even sure what day it was because she was out of her comfort zone. We all were. Their whole job has changed and they have to relearn everything. For those who chose to stay and work it out and work with Robbie, I commend them. It's stressful for them, but they are doing a great job.
I was stressed out too, and at the end of the day, I vented to the camera. Sometimes you just have to let it out. Sometimes Christians try to make their lives appear perfect, like they have no problems. Well, I'm human and I have real emotions just like anyone else. Sometimes I cry, sometimes I get aggravated, but I don't stay there. I'll always end up "letting go, and letting God" by the end of the day.
Sunday December 22, 2013 Episode 9- "Sorting it out"
The weather was incredible this day, it was 70*! So to keep Robbie busy we went for a walk around the block. Throughout his life he has run away many times. A couple of our neighbors have pools and he usually went toward the pools, but never got in. And, yes, he can swim. I'll show that in another blog. Sometimes he ran through the woods and I had to chase him in bare feet through the mud. Other times he snuck out and we had to call 911 for the police to find him. One time my husband heard the call in his truck and the guys working with him said "That sounds like they're talking about your son" and he said "No it can't be, it's too far away from my house". Sure enough, it was Robbie! Thank God the police in my town know Robbie. We got him a medical I.D. bracelet with his address on it which he wore for a while, but always managed to get it off. I learned a new word when he moved in to the first group home. It's called "Eloping" when they do this. They asked if he ever eloped, LOL, and I thought they were asking if he ever ran away and got married! I figured it would be a good idea, in case he ever decided to elope from the new home, to teach him to turn left outside, rather than turn right toward the busy road. When I take him along on my own fitness walk he knows the way, and always knows exactly where to go. So I decided to teach him his new surroundings. Also, you'll see Robbie show off his sorting skills. This is an activity he learned in school, which helps with job skills.
Saturday December 21, 2013.
This was a long day. I had to break it up into 3 videos that day. Episode 6,7,8
Episode 6-"The Breaking Point"
I left the group home that morning after sleeping over, and went to work. Since he had such a great day on Friday, I thought he'd be OK while I left for 4 hours. But by 1:00 I got a phone call to come back because Robbie was agitated.
His mood was terrible and I needed to cheer him up, so we went to visit my daughter Denise at her apartment.. Robbie loves his sisters, and the feeling is mutual, as you'll be able to see when we arrive she jumps up and down at the door, LOL.
While we were inside I realized that I would have to put some of my life on hold for a while so I could tend to Robbie during this whole transition. I sing in a worship band at my church, I sing the female leads, and my friend Matt sings all the male leads and plays the guitar.
This was an important weekend, the one before Christmas, but I made the decision to bow out on Sunday, in case I got called to Robbie's house for an emergency. I didn't want to call at the last minute on Sunday morning, so I called Matt to tell him I won't make it on Sunday so he could get another singer to fill in for me. He prayed for me over the phone.....and then I lost it.
After a month of running back and forth, sleeping on the couch, meeting the police at the house, and worrying about him having a seizure due to the stress....the dam finally burst.
"The Breaking Point"
Episode 7-"Me and My Shadow"
When we were at Denise's apartment, you may have noticed I got nervous about him laying down under the blanket. That's what he does when he starts making himself sick. If it continues, he'll start vomiting, and then have a seizure. So I needed to perk him up. I took Robbie to the bagel store and while they made my Panini, we sat and had a soda. A little sugar and caffeine usually perks him up. Since his fine motor skills aren't all that great, he has invented his own way of opening up a bottle. :-)
I was going to be sleeping over at the group home again, and I don't take showers there, so we stopped home so I could shower. I wanted him to stay happy, so I had my husband take him for a ride in the car playing music to keep him busy. So for those of you who have been wondering where Robbie's Dad is this whole time....here's your answer!
"Me and My Shadow"
Episode 8- "It's 5 O'clock Somewhere"
After visiting Denise, we went to Stop 'N Shop and and cruised around being silly singing in the car. It was a long day and Mommy was losing it by the end of the day! LOL
Saturday, December 21, 2013. Episode 5-"The Sixth Sense"
Robbie moved in on Monday and I have slept on the couch all week. I've spent a lot of time at the group home, and have watched the staff in action. They are not happy about the changes that came about when Robbie moved in. Some are adapting to the change, and some are not. One particular woman just has a lousy attitude. I don't think it's just this week she's like this, I think she's just a miserable person in general. You know, one of those people who thinks the whole world should do things her way, or she's out.
I got up in the morning and tried going to work for a couple hours, but got called to come back to the group home by 1:00 because she was having a problem with him. I was not surprised. I knew Robbie didn't like her. To be honest, I never really noticed how affected Robbie was by other people until I shot these videos. I never saw him interact with people other than family members in this type of setting before. So this was eye opening for me to see how sensitive he is.
Here is my narrative.
And by the way....for those who get nervous about me filming in my car, this episode has bloopers at the end that explain to you WHY I need to film in my car! LOL
Friday, December 20, 2013 Episodes 3-"Losing Sleep" and 4-"Happy Accident"
After getting called twice because Robbie was throwing tantrums and attacking the staff, I have been spending the night on the couch at Robbie's new group home for a week.
In episode 3, I wake up in the morning and get Robbie up and ready to go to his day program.
You'll see how they dispense meds, which is pretty cool. They come in individual blister packets with the date on each pill, so there never is confusion as to whether or not he got his meds. I wish I knew this existed when he lived at home! So many days I sent him off to school and said "Oh no! Did I give him his meds?" Then I'd have to count the pills in the bottle and try to guess if I gave it to him or not. All group homes use this system. I don't know if it's available to the public, but it can't hurt to ask.
Here Robbie comes home from day program with his buddy who he loves. You'll hear him say "We had an accident on the way home" and I shut off the camera because I thought he meant a car accident! (It's the Friday before Christmas so traffic is crazy) But he meant that Robbie had peed his pants. He wears a diaper but he went so much that it leaked. Robbie went swimming that day, and he drinks a lot of water in the pool. (I know, gross, but I can't catch him doing it to make him stop, He just loves the water too much!) So he always has a few accidents after he swims.
In this episode I also go buy a recliner for his new home for his birthday. In his old group home, his roommate had an old recliner and Robbie loved to sit in it. So I wanted him to have something of his own in the new house. But as you'll see in the video, I was refused insurance because it was going into a group home! So I told them what they could do with their chair ;-) ;-) and went somewhere else.
Episode 4: Happy Accident
If you want to see the new recliner when it arrives, you'll just have to wait
Welcome to my new blog! Rather than writing, I will be sharing videos, so this will actually be my "vlog". Who am I? I am a designer from New Jersey and host of a local cable show call "A Taste for Design",
But being a Mom to my four kids is the most important job of all.
My son Robbie is 24 years old and has Severe Autism. When he was diagnosed, Autism was almost unheard of. Now there is a ton of "awareness" and information out there, and schools and programs for kids on the spectrum. But what about after they turn 21? What happens then? Well, Robbie and I are going to share our journey with you!
I recently placed Robbie into a group home (a nearly impossible feat) and have been transitioning him for a month. Last month I was sharing our trials and triumphs with our friends and family on Facebook and decided it was easier to just take video than to talk about it.
After I began filming, I realized that maybe there is a bigger picture. Maybe we have a message we can share to help other families that live in the world of Autism. So I began this blog to share my life with my son Robbie as a way to reach out to other parents, and spread the word that "The world is not ready for that '1 in 55 kids' with Autism after they turn 21". But hopefully as we put ourselves out there, someone will take notice, and begin to make changes in the "system".
So welcome everyone to our life's journey!
First, here is my introduction to who I am, and what the vlogs are all about:
Here is our first episode. Episode 1: Wednesday. "Let Us Begin"
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