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.
It seems all Autistic kids love the water and Robbie is no exception! Both videos today feature Robbie in the water. I swear if he could live in the water, he would! He is in and out like a dolphin.
In the first video we go to visit my little Godson, Nicky. When Nicky's Mom was pregnant with him, the Doctors told her he would be Mentally Disabled and to abort him. She called me distraught. I told her my point of view which I share in the video. Nicky's Mom even let me interview her about the whole ordeal.
I took Robbie to Nicky's fourth birthday party in their backyard. Robbie loves the water, so he went and got in Nicky's kiddie pool. He was mellow at first, but then you'll see it turned into a full out water gun party and Robbie had the biggest smile on his face ever!
July 4, 2014
July 4th fell on a Friday this year so it was a whole weekend event. Robbie's group home called me on Wednesday to ask if I was planning to take him home for the weekend. Ummm, no! I didn't know I was supposed to! But everyone else was going home and there would be no staff, so I had to scramble to find something for him to do!
I sent out an S.O.S. on facebook and thankfully I got a response! Day 1 we went to a cousin's house who also has a daughter (my age, much older than Robbie) with Special Needs who lives in another group home. They have a pool for their daughter and we went there. Robbie really enjoyed it.
Again, something else I didn't plan, was to go swimming. I did not bring a bathing suit and just sat on the edge of the pool as Robbie swam. Well, he decided I need to come in!
The next day we were invited to a friend's house who just put in a new pool for their Autistic son.
Robbie loved it. You'll see he is in his glory! This is probably one of my favorite videos of him because he is very mischievous and very happy!
In today's blog, I want to focus on my youngest son David.
It's not easy being a younger sibling of a kid with Autism. Robbie's sisters were 5 years older than him, and were built in babysitters. They babied Robbie and took care of him. Their friends were also babysitters, and one even became a Teacher of children with Autism.
But David was 5 years younger than Robbie, and was afraid of his tantrums. His friends were afraid of this strange noises and banging and so David really never had any friends come over to play. When Robbie had his first seizure, David was traumatized. We set up a procedure that every time it happened, David would run next door so he wouldn't have to see the police and ambulance arrive. Robbie started making himself sick every weekend, so it became a regular event every week that our house went on "Red Alert".
It wasn't until David went into High School that everything changed. Robbie went into a group home David's Freshman year. The following year, David grew to over 6 feet tall and switched from soccer to football. His confidence grew as large as his stature.
June is the month of Father's Day and Graduation. In the last blog we focused on Father's Day. This time, I'll talk about Graduation. When my girls went to prom, we took photos on our front steps. In their Junior year, Robbie was shorter than them.
A year later we took the same photo, but I could see how much Robbie had grown in a year! David was in Kindergarten in the first photo, and in first grade in the second!
I tried to reenact these photos for prom for David, but it didn't work out this year. I have to call his group home and schedule everything, and things never seem to ever go right. You'll see in the video.
Senior Prom
I can't believe where the time has gone!
When David graduated, I didn't bother having Robbie brought to his graduation ceremony because they would probably show up too late, and he wouldn't want to be there anyway. Seeing David in his cap and gown made me remember my daughter Patti's graduation from college.
We brought Robbie up to Massachusetts and left him at the hotel with David and Denise and it was a total disaster. I talk to David about it in this video. The hardest part to hear was when he says he was always afraid of Robbie....until he grew bigger than him.
David's Graduation
After graduation came Father's Day, and you'll have to go back to my last blog to see what happened then. Robbie had a behavior and ended up in the Behavioral wing of the ER of the hospital. I had a really, REALLY stressful two weeks. Then, we had to take David to orientation at his new college, Salve Regina University in Newport, RI. It's such a beautiful place and I enjoyed getting away for two days. Everyone who has ever been to Newport loves it and talks about the Cliff Walk and the Mansion Tour, so I thought I'd take you on a little tour. I tried to fade into the background and just act like a "normal" family for 2 days, but it wasn't that easy.
Salve Regina
It hasn't been easy being part of this family, but I believe it's made us all stronger and taught us many life lessons. Like being more compassionate and understanding, and that material things are not that important. I encouraged my daughters to go into the field of Special Education or Occupational Therapy, and one of them listened to me. LOL. I told David he should become an attorney and work helping to fight for the rights of people with Special Needs. But instead he's going to play football and go into the sports field. Oh well, you can't win them all!
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.
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
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! :-)
Any good Boy Scout has learned that motto well. "Be prepared"! In case they get lost in the woods they should know how put up a tent, find food and start a fire. Well when you have a kid with Autism, they like to "elope" and they have a fascination with water,and I have learned to be prepared! Robbie wore an ID bracelet and he learned how to swim at an early age. (I talked about eloping in episode 9, when I took Robbie for a walk.)
I was moved by a story in the news about Avonte Oquendo, a 14 year old boy in New York who had Autism, who ran out of his school and was missing for 4 months. They recently found his body 11 miles away in the river. If you're not familiar with the story, here it is.
This was probably our number one fear throughout Robbie's life. One of the first times he ever ran away was during the fireworks on July 4th when he was 3 years old. I talk about all of this in this video.
Episode 22 "Be Prepared"
Since shooting this video, I have read that they are trying to write an "Avonte's Law" and get funding for tracking devices to find "runners". Let me stress that I feel strongly this should be voluntary, and it should be a parent's choice to use a tracking device for their child. We don't need Big Brother to begin tracking everyone ;-) I know I would want one for Robbie, but it should not ever become a mandatory law.
Avonte's Law, from what I understand, would be that the government will fund the tracking device, rather than parents have to pay for it themselves. Here is an article that talks a little more about the device.
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.
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.
.jpg)
