Summer Time Blues

  I'm so far behind on my blog I'm going to include 3 videos!

 

 

 

  In the first video,  I drove up to Spruce Lake in the Poconos to talk to people from Joni and Friends, which is a camp for Special Needs kids AND their families. Joni Earikson Tada is well known in Christian circles. She is a radio personality, public speaker and is on TV. She was in a diving accident years ago and is in a wheelchair. Now she heads up a whole ministry to people with Special Needs.

 

They have an office in Philadelphia and they help churches set up Special Needs Ministries. This includes Sunday School classes as well as support groups and outreach to the whole family, not just the children. They are a wealth of knowledge and support. I was a bit overwhelmed with how big this could become.
  Last month someone handed me a book called "Same Lake Different Boat", written by a woman who runs Special Needs Ministries. When I went up to meet the woman from Joni and Friends, she suggested I may want to read a book....you guessed it, same book. She said to contact the author. I haven't done it yet, but I will soon.

 

 

   For now I've decided to start up a support group for parents, open to the community, not just people from church, to gather together and talk, hang out, share information and just feel like they have a safe place to gather and talk and make new friends. I would like to eventually start up a Sunday School class for kids with severe disabilities like Robbie and hire a teacher with a degree of "Teacher of the Handicapped", but for now I'll start with one thing at a time.

 

Episode 47- Camps and Support Groups

 

The following week Robbie had the longest seizure he has ever had, lasting 4 minutes 20 seconds. He was taken to the hospital in the ambulance and when I arrived to the emergency room, he was completely out of it, eyes closed, unresponsive, and frankly it scared me to see him like that. It took a couple hours for him to come around. Whenever we are there, he just wants to sleep, so he turns around on all fours, and pulls the blanket up over his head to make it darker. Then he starts pulling off all the leads, wires and eventually the IV. That's when Mom steps in and goes all "Terms of Endearment" and starts pressing the doctors and nurses to let him go home. They were really good at this hospital and when Robbie started to come around, they sent him home.

 

Episode 48- Seize The Day

 

The next day after the seizure he was tired all day. Then on Saturday I took him to the beach and he was like a new guy! I kept Robbie seated in a chair by the water, feeling that's the safest position just in case of a seizure. Also, my sister in law went with me, who is a nurse, just in case. But there was no need to worry. This is my favorite video of all because Robbie is so happy and playful and you'll see how he teases me and will even hear him laugh!

Episode 49- Beachin'

 



Boys in Blue

   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.

 

http://autism.voirici.net/?p=375

Music Lovers

   If you've followed our blog you will pick up quickly that Robbie and Mom both love music! Once in a while I'll do a gig with different bands, and every summer I do a local "Concert In The Park" under the town gazebo.

 

 

(2008 Concert with The Jersey Souls)

 

I had them bring Robbie and he came and enjoyed the music. He came with his room mates, and I'm not allowed to put them on camera, so I wasn't able to use all the footage of him. But the best part was when he got up to dance with Denise, and that you will see!

 

 

 (Concert in 2007)

My sister (standing) before marriage and kids! LOL, Robbie with shaggy hair, and little David!

 

 

Another highlight is when my son David came up to sing. Everyone always wants to know why David chooses to sing doo-wop. Well, my husband plays doo-wop in his car and has handed down his love of oldies to my son David. Personally I think it's the vocal harmonies that have caught his attention.

(David at a Doo-Wop concert with his Grandma! He went to hear the Duprees)

 

 

You'll see him get up and sing two songs, much to the delight of the audience. You'll see a woman come over and say something to me. She is saying "You must be very proud!". What I am most proud of is David's confidence as a 17 year old kid to get up and do that fearlessly in front of an audience! It took me 20 years to build up the confidence to sing in front of people!

 

 

 People bring their lawn chairs and usually the kids all dance up front.

 This year they had a magician keeping them occupied, but a couple of them came up front to dance with me. I especially love this one little girl who danced as David sang. I dare you to watch and not smile!

 

Patti comes to visit/Seizure Center

  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.

The Seizure Center

"Little Brother"

     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!

 

 

Father's Day in the ER

"Happy Father's Day. Your son is in the hospital"

 

    
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

 

23-Movie Night and Mother's Day

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

I hope your life gives you many rainbows!

 

19-"Yes or No"

 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!

    Here he is in all his blonde haired glory!

    (click the link to watch the video)

http://www.youtube.com/watch?v=IFvMOhVlB3s

 

    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.

18-"Good Job"

 

     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.