Ever heard the song Shiftwork by Kenny Chesney & George Strait?  Well, that’s our life, 7-3, 3-7, 11-7 all these hours combined in one day! There were nights this past week that Jack didn’t go to bed until 2am & 5am & then up at 9am, that meant I was up until then.  Not only was I up, Jack was being very disturbing playing music as loud as it would go, rummaging through the frig, talking/singing loud, ugh…what a night(s), so no one really gets a good night sleep around here.  After the torturous night of staying up until 5am only to awake at 9am with Jack bounding through the house like a person that just downed 5 Red Bulls, a cup of espresso, & a line of coke, I made the expert decision to increase his melatonin dose for the next few days to try to get him back into his normal bedtime, usually before 1am.  I often feel like a doctor working 72+ hours in a shift, getting 6 hours of sleep in a night is a win for me!

This past week has been especially hard.  Jack is involved in chatrooms, these chatrooms include live streaming, are in groups, he can see them & vice versa.  I never would of believed in a 1 million years that he has partaken in the activities he does.  The language these people use & the topics discussed are revolting for any age.  And I know what people think, you take that away from him, it’s that easy, but it’s not.  Because Dravet plays by its own set of rules, we have had to make adjustments to our lives each & everyday.  He never could play sports or be involved in extracurricular activities due to the excitement of these things causing seizures.  Our adjustment to helping create the best life for Jack was games & television.  When most kids were out practicing their baseball swing, riding bikes or climbing in a tree, Jack had only a few options-watching TV, playing on his computer or Nintendo, or messing around inside the house.  The games & computer became an obsession, his distraction.  We thought for the rest of Jack’s life, we would be privy to the mind of a 6 year old with watching Max & Ruby, Power Rangers, listening to Jack win a computer game on PBS Kids, boy how we were WRONG!

This part is for all parents, whether you have a normal child or a special needs child, please read & take my advice.  Jack has never heard us use cuss words, not sure that he has heard any on TV either until this summer when he got involved in the chatrooms.  These people get in arguments mainly with one another about race, nationality, sex, all topics Jack has zero knowledge of & most of the rooms are riddled with ugly words.  Just recently, one individual was telling Jack to say ugly words too, which he did-that was really painful to hear & just another something to worry about.  And to top that off, we’ve got to worry about Coleman & Ava hearing such. Now, Jack is on the hunt for a girlfriend, bless his heart.  He is wanting to have more social interactions, but does not know how to go about finding the appropriate people to talk with or have the knowledge to do so.  Jack can’t be the only person in Richmond County that is mentally challenged that needs more socialization.  I urge you all, if you know of someone that has a teenager/young adult who you think would enjoy some type of social gathering, please put them in contact with me.  I am interested in getting these kids together so that they can feel included too.  Whether it’s meeting at The Berry Patch for ice cream or a local church for games, the need is there I know!

But getting back to the advice thing.  As we thought Jack would always be in the mindset of a young child, we were obviously wrong.  We did not take the proper precautions to protect his computer/iPad from the evil of the internet.  I had no idea the uglies that were on Facebook.  I have a friend that always says Facebook is the Devil’s playground.  I never really saw that, until I looked at Jack’s Facebook page & saw the sexual content on different pages.  I spent many a night staying up until 2am reporting these pages, it was making me crazy.  I would report 100 a night, only to find out he had befriended 100 more the next day.  This is another example of “shiftwork”.  No matter how innocent you  your child is or how young, please look into Net Nanny or other protection programs, look into getting a special router to block X-rated sites, you can even block certain words.

Each day, nearly every hour, sometimes every minute, we are faced with something new to deal with & it’s typically not a good thing.  I wonder many times a day how in the world some people are destined for life on the beach margarita in hand, while others are faced with challenges every.single,day.  However, for the first time since Christmas Day, Jack rode in my car this past Friday.  It blows my mind to think it took over two months to get him back into my car.  Since then, Jack has been coming out of his room more, even ate supper in the recliner in the living room today.  He goes weeks without walking past the kitchen, so that was a real pleasure.  In closing, I ask that you pray that Jack will continue to come out of his room more, be more flexible with things asked of him, less time spent on the computer, to find good friendships, & most importantly, that he will never be violent again.  Thank you big!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

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