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

 

20-"Time to move"

Well it's been a couple months since my last blog. We've been really busy, but there has also been a lot going on. Robbie had to move out of his new home and he is temporarily living in an assisted living apartment. I'll explain in the video. I felt like my vlogs were working against us and giving people ammunition to use against us, so I took a break for a while. Everything has settled down and things are going O.K. for now. So, here we go. We're back!

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.

 

16-Behavior Specialist

 

     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.

                                                         Meet Robbie's Behavior Specialist.


                                                             (click the link to view the video)
                                          http://www.youtube.com/watch?v=NoyeDDKzfkw

15-Be Prepared

    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.

http://nypost.com/2014/01/18/avonte-may-have-been-running-from-dog-drowned-police-theory/

    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.

http://newyork.cbslocal.com/2014/01/29/justice-department-to-fund-avontes-law-proposal-to-offer-tracking-devices-for-autistic-kids/


     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.

http://nycitylens.com/2014/02/parents-of-autistic-kids-look-to-tracking-devices-for-help/

 

     In case you missed Episode 9, where I talked about "eloping", here it is.

14-Moving Target

     This Saturday Robbie wasn't very happy.

     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.

 

Episode 21- Sunday Drive

13-Doctor Doctor

    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.

12-Robbie's Story

January 2, 2014

 

               Parents of kids that are younger than Robbie usually want to know how I got him into a group home. So in these videos I share information that was passed onto me. First, I tell WHY he is in the group home. I thought Robbie would live with me forever. I had no problem with that. But I came to realize, he didn't want to live at home anymore.

Robbie's Story: Part 1. WHY he is in a group home.

In the video I describe how much he hated holidays. Funny, as I look back at old photos, every time I tried to get that Christmas Card photo, Robbie never sat still for the picture and always pitched a fit! Here are a few:

 

 

 I can laugh at these now! LOL

 

He is whining and refusing to sit. The girls are holding him down.

 

Patti is holding him, but he is not cooperating

 Denise is holding onto him to try and make him sit

Here' he refuses to sit and is starting to get too big to hold down.

 

It's subtle, but Dad and I are restraining him a bit to keep him from running away.

 (Yep, that's my real hair color! ;-)

He was REALLY having a fit this day. Denise just got the dog that day, and I think Robbie was afraid of it. The dog didn't last long.

 

 

 

It wasn't until he had his first seizure that I started putting two and two together, and realized he always got sick on holidays. Here are some pictures I took in September 2012 when we stayed in the hospital for a couple days for an EEG.

                           

 

 

 

In Part 2- I share HOW I got him into the group home. No one tells you how to do this. I just "happened" to run into the right people who gave me the information I needed. Now I'm happy to pass it on to other parents.

 

Robbie's Story: Part 2 HOW he got into a group home.