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.
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'
Hi. I am in NJ as well. Anyway, I have been looking to connect with parents who have kids with autism. I have a 13 year old son with autism. I saw your screen name when it was mentioned in the comments section of the one of the videos of the man who adopted his son with autism.
ReplyDeleteWhat a transformation your son had undergone from the few videos I saw when he was a young kid. What happened in between those young years and now that he is mid-20s? I am trying to track down the transformation of my son when he was still so young going up to his current age because I want him to function as normal as possible just like us. I have not given up that idea. Hence, I taught him and still am teaching him from academics to life skills. He goes to a school in a classroom for children with LLD. However, the school right now wants to kick him out to a Multiply-Disabled and/or ABA classroom. Well, I am still fighting that. It seems like that students with autism in NJ are usually being just prepared for life skills so I can not understand the fact that NJ has best schools for children with autism. I want kids to learn, be taught and be knowledgeable to prepare them for life but I saw also in one of your videos that you did not like the idea of teaching him how to use the seat belt and how to open the car as he might bolt out. I understand the issues for some people who have a tendency to elope but sometimes, teaching them what should be done over and over, they will surely get it into their heads. Well, I believe so much in children or adults with autism that they can function like us if we and the people around them just gave them the chance to learn. Learning is a lifelong process for all people. We constantly learn things, if we do not, then life can be boring and useless. Somehow, I am still full of hopes no matter what happens but of course, at the back of my mind, there are still worries of what will happen when he grows up and such. Then, I reminded myself back when I was young, even though, there were no apparent disabilities in me and with my siblings, we were extremely poor. I would worry so much where we will get our next food, if we will be able to go to college. Life is always uncertain and that makes it interesting for we can devise what we will do next if one fails or is not what we expected. I know, there is still a long road ahead but I try not to think of it too much so it will take its own course.
I hope you can write back to me to my e-mail and would surely appreciate it. Until then, take care and am hoping for the best for your son.
Ann
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