January 6, 2016

Our Community Mourns Jayliel Vega Batista.

On New Year's Eve, I got a text message on my phone at 11:15 pm that a 5 year old boy was missing. He had wandered off from a family home while the family was gathered for a late dinner and get together. Being a mother to a child that is on the spectrum, this hit me harder than I thought it would. The minute my boyfriend and I heard this news, we decided to head out and help search. My house is right along the canal so we left on foot and started the search. It was freezing out and the child had nothing but sweats and a long sleeve shirt on. He had no shoes or a coat. He also was holding a nabi tablet. Before any judgement on these parents, know that this can happen to ANYONE. This child was surrounded by family. He comes from a loving home and was constantly watched. His parents are great people with beautiful, genuine hearts.

After a few hours, we headed home to get some rest and head back out in the morning. This time we were heading out early in the morning to help the family search. Friday, January 1st, 2016, my daughter and I were searching for a little over 6 hours. We searched garages, sheds, cars, woods, and along the canal. At about 6:00 PM that night, we decided to head home. We couldn't feel our toes, our fingers, our legs, etc. When I got home, I hugged my little guy a little tighter that night. My 7 year old has wandered off before and it has scared us beyond words could ever describe. Nobody knows why children on the spectrum are attracted to water, but they are. My son was up until he jumped out of my arms while on the lazy river at Dorney Park & Wild Water Kingdom. He almost drowned. That scared him and traumatized him to the point that he doesn't even like doing the kid's water slides at the water park now. You can watch that video here ---> https://youtu.be/hdD4UkRVrxY He was actually 4 years old there, about to turn 5. My husband was in Texas at the time visiting his mother so I had called him and I didn't want to sound scared so I had to change my tone of voice so that my son could tell my boyfriend what happened. We were laughing in the video because my son said I was like a superhero and we both know how much he is obsessed with superheros and because I did say a bad word and he mentioned it but in no way was this situation funny.

Jayliel's Nabi tablet was pulled out of the Lehigh Canal on January 2nd. His body was found about two hours later six feet away in about 8 feet of water. You can read more about how the amazing community of Allentown, Pennsylvania came together for this family in this article here --> http://www.mcall.com/news/breaking/mc-allentown-missing-autistic-boy-20160102-story.html. This story didn't have the ending we all had hoped for. Children on the spectrum have to be watched all the time. My son does not go with me to the store if I'm alone. I'm either accompanied by my husband or my daughter. He always needs two sets of eyes and that sometimes isn't always 100% foolproof. Our Police Chief and Mayor were deeply saddened and took this tragedy personal. Since the minute they were notified that Jayliel went missing, they went out and joined the search party. In the picture above, you'll see my daughter relighting the candles that blew out from the wind. In the picture below, you'll see that the family rearranged all of the candles the community brought and spelled his name with a cross and heart. His funeral was paid by by the Nico Elias Funeral Home in Allentown. The minute they heard the news that they had found Jayliel's body in the canal, they offered to donate their services. Jayliel was spotted twice that night. He ran away from those that tried to go after him.

I know that this post seems to be all over the place but I did that on purpose. To give you an idea of how it feels to have a child on the spectrum. From the minute my husband and I wake up, to the minute we go to bed, we are on high alert. Sometimes, my husband doesn't sleep because my son will wake up in the middle of the night and roam around the house. My boyfriend also sleeps in the living room beside the door - just in case my son decides he wants to open the door in the middle of the night, which he has done in the past. My son is high functioning with ADHD but still needs to be monitored at all times! We try to keep him entertained at all times so he doesn't get into things he shouldn't or do things he shouldn't be doing. Kids on the spectrum tend to be a little OCD and get fixated on things. My has a lot of action figures and wrestlers that have to be facing a certain way with their arms a certain way. He will tear something down and clean it up a hundred times if he could to get it the right way. He has temper tantrums if he doesn't get something right. And by right that could mean when he's drawing and the eyes are off, or if he's building something and it keeps falling apart or simply losing a card game. He will harm himself by grabbing at his face or hitting himself. It's hard to see your child going through this. Some days are good and some days are bad. today so far is a good day with our son. We could go a few days without having a bad day and then we could have a few bad days straight. Kids in general are unpredictable but kids that are on the spectrum and that times 10. Our typical day when he isn't in school and when I'm off of work usually consists of this:
  • Waking up and feeding him breakfast
  • Some relaxation time for 30 minutes to let his food sit before he starts jumping all over the place
  • We start to paint for the next 2 hours. 
  • We'll clean up and then go to his legos and build some stuff
At this point he's kicking me out of his room because he wants to be alone now so he could play with his action figures. He'll be there until it's time for him to eat lunch and then dinner. I will stay in my room, at my desk either on my laptop - doing some research, or reading a book on my chair while facing his door the entire time. If at any moment I don't hear a sound, I immediately check on him but 99.9% of the time, he is talking to himself and making sounds. I would love it for my son to have a GPS bracelet. It would definitely help my anxiety and I truly believe, Jayliel could have been found a lot sooner and possibly alive had he been wearing one. Realistically not everyone could afford them. Let this post be a reminder that this can happen to any parent and that being a parent to a child with autism, is not easy. So please I ask again, don't pass judgement and pray for this family. They have to bury their child and no parent should ever have to do that. For those of you in the Lehigh Valley that wish to pay your respects, click here to read the information on Jayliel's obituary --> http://www.legacy.com/obituaries/mcall/obituary.aspx?n=jayliel-vega-batista&pid=177170271&fhid=28244

No comments:

Post a Comment

Thank you for visiting and commenting. Make sure you subscribe!