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.
Tomorrow is Valentine's Day and I saw this post on a Facebook page for advocates of kids with Special Needs.
This is my message! Many times people want me to talk to other parents who are having a hard time with the fact that their kids have been diagnosed with Autism. This is the message I always give them, and it's become my mantra "Love them the way they are".
When Robbie was little, I belonged to a Charismatic church that believed that being "blessed" meant that God wants everyone to be prosperous. This was a "Word of Faith" church that was a big movement in the '80's. In their minds, that meant God wants you to be rich. They believed God wanted you to have a big house, a big car and big bank account. If you had these things it meant you were blessed. They also believed you should always walk in "divine health" and preached regularly about being healed. If you were poor or sick, then it was your fault and you simply did not have enough faith.
In the midst of all of that, my son was diagnosed with being Autistic. According to their theology, if my son had an illness and wasn't healed, then there was something wrong with me. Well, I prayed and asked God what I should do about Robbie and I believe I got this very simple answer from God. I heard in my heart "Love him the way his is". This sounded almost too simple of an answer but I came to realize years later how profound this answer really was. Now, to those who don't consider themselves to be a Christian, or person of faith, they may think this is crazy that I would say I heard from God. But I believe with all my heart that God spoke this to me.
One day a woman from my church got on my case and told me I needed to be "speaking the Word of God over him and believe for his healing". I politely thanked her for her advice and concern, but said that God told me to love him the way he is. That seemed to shut her up. LOL.
To Word of Faith people, that may have sounded like I was giving up, or giving in, or losing my faith. But that one sentence has gotten me through the past 20 years and kept my faith as strong as a rock. That simple phrase has gotten me through all the issues and behaviors with Robbie, and has helped me not to be too hard on him, or on myself. It's helped me keep a positive attitude. I am not ashamed or disappointed in Robbie, and I can proudly say I love him just the way he is! I think all his quirky behaviors are adorable. I am never sad in any way that he has Autism and would not trade him for any other "typical" child at all. I know, people don't like that I use the word "normal", but I don't know how else to say this...If Robbie was "normal", or "typical", or not Autistic, then he would not be Robbie!
Over the years I have seen lots of parents trying to cure their kids of Autism and make them "snap out of it" or "bring them back". I have also seen many of them depressed, or angry, or looking for someone or something to blame for making their kids Autistic. This hurts me to see this. I sometimes wonder how the Autistic child feels knowing their parents don't want them to be this way. I'm not saying we should give up on finding a cure, but I worry about how the kids perceive it when parents want them to change.
I don't want to change my son, and I don't want to be angry, disappointed or depressed. I love my son...just the way he is. I just want him to be happy and well taken care of. I want him to be productive and have the best life that he can possibly have. Isn't that what we all want for all of our kids?
This is one of the first videos in the series, but I'm bringing it back for those who missed it. It's my message to parents to just love their kids, just the way they are.
With love, Cindy
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.
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.
I had to leave work early to pick him up and take him out. He had no snow boots so I took him shopping. He was OK in the beginning, and let me play with him. But after a while, he just had had enough. He attacked me in Target. I kind of wish I had the camera on to show it. He pulled me to the floor as we walked in the door. As I watched this back, I can see that I pushed him over his limit. He was getting annoyed and I should have known when to quit.
Episode 20-"Moving Target"
The next day, he was still grouchy. But a ride in the car always cheers him up. So we got in the car and drove..........and drove and drove, all the way to Pennsylvania! My Grandparents lived in Hellertown, PA so we went all the way to their house. It's a typical old restored PA stone house.
They belonged to the Saucon Valley Country Club, which is such a beautiful place. So we drove through the club, and then turned around and came all the way back! We killed a couple hours in the car. After that he was hungry, so we hit the BK in NJ.
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.
