Tuesday, July 22, 2014

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

Sunday, July 20, 2014

Water Week!

  

     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!

Friday, July 11, 2014

"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!
 
 

Tuesday, July 1, 2014

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