This summer has been pretty nice, I must say, for New Jersey weather. Usually we get intense heat and humidity in the mid '90's. But this year it's hovered around 80* making it really pleasant all summer
. Every weekend I try to come up with something to do that Robbie will enjoy to keep him moving, keep him busy, keep him happy, so that he will enjoy our visits and look forward to them. As long as we have good weather, it's easier to find things to do!
This week my sister was taking her two daughters, ages 2 and 8 months, to the zoo and invited us to come along.
Robbie really isn't interested in animals, but he does enjoy people watching! So he likes to go anywhere there are people around.
I haven't been able to figure out why some things he likes and others he doesn't. But I have found that he enjoys pushing shopping carts. Usually he walks way too fast, and is in way too much of a hurry to get out of places we visit, but pushing a cart slows him down and makes him keep a steady pace, and somehow he knows he has to stop and wait. I credit his wonderful teachers in school who took him on outings to the community with teaching him this skill!
So I had him push the stroller at the zoo and it worked! He kept a nice pace, waited appropriately, and did really well. At the end, we rode a choo-choo train, and that was like a reward for good behavior all day! He almost even cracked a smile. :-)
At the end we split from my sister, and since there was no more stroller to push, he lost patience and he started to sit on the ground to show his protest. That's when I knew it was time to go home! LOL
Here's our visit to the Turtle Back Zoo. Robbie didn't look at the animals, but I think you'll enjoy watching them!
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.
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!
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.
