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'

 



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!