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"