Before actually having children I often played with the idea of being able to raise children without a tv or very, very limited engagement with one. When I became pregnant with Reilly, naturally I thought more and more about the type of environment I/we would like to create for our children and again the idea of minimizing tv use was part of our vision.
Then came Reilly. I don’t remember exactly when she got her tv but I am guessing she was around 2. Any parent who has a child with severe issues would most likely not even question this decision but I know it is hard for a parent of a normal child to comprehend how bad could it get to warrant such a crutch. Well let me tell you, we have seen hell first hand and made it back to tell the story that getting a tv to help with the issues at the time was a life saver on so many fronts.
The acquisition of the tv was prompted by Reilly not being a great sleeper. Let me be more specific. I can’t remember when it started but by the time she was 2 she was expressing severe bouts of frustration and irritation particularly at night where she would wake up screaming and be up for hours. Nothing medical related seemed to be the issue. And if she wasn’t screaming, she would wake up cackling (laughing) and although this seems innocent it wasn’t and instead marked a psychotic side of what would be Rett Syndrome. As a result of many sleepless nights of despair, we chose to accept a gift from my parents – a Winnie the Pooh television for her bedroom to hopefully distract her from whatever was going on. This television didn’t solve all our problems but it gave us enough relief to see another day.
In the last couple of years I can’t remember when we last used it in the middle of the night. Her night-time screaming and laughing are no more but she still wakes up several times a night but this has nothing to do with the physical presence of the tv and we are able to get her back to bed through other means. During the day though, her want for the tv is another story, as she is completely addicted to watching “television” whether it be on a tv, computer or ipad. Part of her addiction has to do with it being one activity she can really enjoy without any effort. She has lost ALL fine motor skills, in other words, she does not have the ability to use her fingers to pick up or grab any toy/food/anything. To top it off she no longer can walk on her own and consequently does a lot more sitting than all of us would like. Without saying we do our best to off-set tv watching with other activities – reading, listening to music, socialization with others, etc. but at the end of the day the television is her best friend, and our greatest ally.
Of course we try to limit Reilly’s watching of tv but another challenge stems with London and her concept of fairness around the use of the tv. I think she has officially given up thinking that she too will acquire a tv in her room but that hasn’t stopped her in getting in her fair share of tv watching. Due to all the challenges we have had in prior years, London has been exposed to way more tv than any of us would have liked. It also doesn’t help that the only way Reilly would travel peacefully in a car is if she is watching tv (music doesn’t cut it) and so London would also be exposed to screen time. Although we lead a very active life and keep pushing and/or exploring the special needs boundaries with getting out there and trying different things as a family it still leaves lots of time where it makes sense to have Reilly watch tv but how can you tell London to do something different. You might just say ‘You do!’ which we do and boy do we get resistance. Of course that is part of parenting but there is parenting and parenting within a special needs household.
So going forward here is trying to keep television/ipad/Netflix/etc watching to one hour MAX per day per child and two hours per day on a non-school day/weekend. Oh boy, wish all of us luck.