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!

 

A Walk On The Wild Side

   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!

Episode 44 "Trip To the Zoo"

 

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

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!

"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!