Just a short post today, well short for me anyway, to keep everyone updated with our little spurt of progress since my last post. We have continued with the method of an autonomous education for Mollie and things do seem to be improving. She seems much happier, relaxed and chilled but it has taken several weeks and the complete removal of any attempts to guide or teach her anything in order for the depression that was engulfing her to lift.
This may be a temporary period of calm but we shall enjoy it while it lasts. I have experienced these periods of tranquility before but I have learnt from bitter experience that they can disappear in a heartbeat and take weeks if not months to get back.
Mollie is still very preoccupied with the computer and her Ipad but we are starting to see flashes of interaction with myself or Lee every now and again. She is very smiley at the moment and appears to be very happy within herself, she is playing ‘Minecraft’ a lot and I can often hear her laughing out loud at the current ‘Minecraft You Tube’ videos that she has on while simultaneously playing on her own game. I believe that she plays a lot on a server which means that the game is interactive with other ‘ Minecraft’ players; well that is a form of social interaction in my book even if it is not face to face interaction. The game involves team play and helping each other while playing a game that does require a lot of cognitive thinking. She is reading and typing and so we have literacy covered as well, thank goodness for ‘Minecraft’. Every so often she will call for me to go into the kitchen so that she can show me something that has tickled or impressed her, this again is an improvement from where we were only a few weeks ago.
I am making regular attempts to encourage Mollie to take part in various activities organised by my local Autism Group but to no avail. Oh well, I shall continue because you never know if her stance on this will change. She is extremely conscious over her weight which may also be a factor and so I was thrilled when she suddenly, without warning, began her own exercise routine. With no assistance from me, I wasn’t allowed into the room; she put on the Wii fit and completely set up her own profile all by herself. This involved typing in her name, weight, height, navigating her way through the instructions and so on. She has done it twice now but whether she continues with this remains to be seen. She has also been asking for baths, brushing her hair and she has been more willing to brush her teeth. What this sudden interest and pride in her physical appearance tells me is that she is feeling better about herself which is the absolute and most important thing for me.
Yesterday and today I have managed to engage Mollie in a few activities to try to encourage her to seek a little bit more variety to her day than the computer alone.
- We have made angel delight which is so simple and easy but something that she really enjoys doing.
- I used her desire to want to decorate her angel delight and to have it in nice dishes as a means to encourage her to come to the shop with me.
- So we made the very short trip to Aldi, literally two minutes in by car on a good day I would have encouraged a walk but she had been up all night and so I didn’t want to risk anything that may tip her over the edge as she was already exhausted. We were in the shop for about five minutes and she was itching to get back home. I was pleased with what we had achieved and so we quickly purchased our stuff and left.
- In the afternoon we made and painted some ‘Minecraft’ items out of cardboard and pictures that Mollie had downloaded.
- Today we did even better and we took Rosebud, our lovely little Morkie puppy, to the park.
- Mollie had a little play and then we went for a walk around the woods, the little path way had become totally overgrown with nettles and very prickly plants, and we soon found ourselves in a bit of a tricky situation.
- Mollie and I worked as a team to negotiate the best path out of the woods to avoid getting our bare legs stung to death. We carefully held nettles back for each other and proceeded with caution. Mollie said “we are working as a team aren’t we mum” to which I replied “yes matey we are and we are making a very good team”.
- Mollie also shared with me her theory on the extinction of the Dinosaurs and the emergence of human life. Apparently the meteor that hit Earth was actually an Alien spaceship that collected the Dinosaurs and dropped off the humans. She said “I don’t believe in evolution, this is where humans came from not from monkeys”. I was left to ponder if she had secretly been watching ‘Scientology’ videos on you tube but I decided that I would let her enjoy her little thesis on life on Earth rather than to try to correct her. After all who am I to correct her when the world is full of different opinions and theories and I am a big believer in the ethos of ‘each to their own’ because who am I to judge.
The above achievements are just normal, boring and simple everyday things that families with typically developing children take for granted but for a family with a child with PDA achieving these basic and simple successes feels like winning gold at the Olympics. A big plus of experiencing life with a child with PDA is that you naturally learn and adapt to being so very happy at such little things. While ordinary folks may need a lovely holiday to look forward to, a new car, a no holds barred shopping trip, a meal out with friends or so on to bring pure joy and bliss all I need is an hour down the park with Mollie to experience that same feeling. I think that I will speak for many PDA parents regarding this feeling of euphoria when you are allowed to experience just one seemingly normal day.
Many years ago Lee and I would chuckle out loud and comment that the character of Stewie in ‘Family Guy’ had obviously been modeled on Mollie. Little did we know then what an accurate comparison we had innocently made. With this in mind I had a really good chuckle when I came across this in Mollie’s room the other day. I realize that I am going a little bit off topic but the reason why I am posting it for you is because this is so Mollie and so funny. I would also like to highlight that for a child that has received little formal schooling for four years coupled with extreme dyslexia that I think that her writing and spelling is extremely good. This level has been attained with no formal teaching but by simply learning to read and write by playing games on line and by searching for topics that she is interested in.
The caption reads – you will bow down to me Jake I have already taken your room over. Pure PDA Gold !!!
Mollie’s Current Sleep Cycle
Time spent, activities achieved and successes enjoyed are very much governed by Mollie’s very unique but now predictable sleep routine. Mollie’s sleep cycle does not neatly fit into a 24 hour day/night, wake/sleep cycle due to her appearing to suffer from a sleep disorder. However this sleep disorder has over time, developed into its own little pattern and one that we can try to predict and work around. It goes something like this but of course, there will occasionally be variations to the rule.
This is not the actions of a naughty child who just refuses to sleep this is the timetable of a child that is for now, for whatever reason, affected by a genuine sleep disorder that follows its own pattern. She goes out of sync because her periods of wake and sleep do not fit within a 24 hour cycle. The following is a very rough prediction / guide of Mollie’s sleep cycle.
- Wednesday – Mollie went to bed at 7.00pm following a period of being awake for 27 hours straight.
- Thursday – Mollie woke up at 10 am and I predict that she will probably go to sleep at between 2.00am – 4.00am Friday morning.
- Friday – I predict that Mollie will get up at around 11am – 1.00pm and that she will fall asleep at about 3.00am – 5.00am Saturday morning.
- Saturday – I predict that Mollie will get up at about 2.00pm – 4.00pm and that she will fall asleep at somewhere between 5.00am 7.00am Sunday morning.
- Sunday - I predict that Mollie will get up at about 4.00pm 5.00pm and that she will stay awake all night.
- Monday – Mollie will stay awake all day in an effort to pull her sleep cycle back around. Today she will be dead on her feet from the early afternoon onwards. Lots of attention and engagement is required by Mollie on these days because she does not want to fall asleep. I predict that Mollie will stay awake until about 7.00pm 8.00pm. Today she will go to bed at a fairly normal time and tomorrow she will wake up at a fairly normal time.
- Tuesday – Mollie will wake up at between 10.00am – 11.00am and this is the only time that we have a fully rested Mollie for a whole day. This is the day that we try to make the most of because dependent on her cycle we really don’t know when the next one will come around.
The gradual cycle of waking and sleeping being pushed further the wrong way around the clock until we reach the stage of the cycle that results in a stay up all night followed by a stay up all day, which temporarily rectifies the cycle, usually takes between one or two weeks. I will try to log the coming week so that I can give an accurate rather than a predicted account.
MMmmm what a damn fine idea and that is exactly what I’m off to do now. A great day with Mollie, beautiful sunny days and glass of vino makes me a very happy bunny.
Thank you for reading this post and if you would like to read more about PDA please click on the following link.
If you would like to read more about sleep disorders then please click on the following link.
If you are interested to understand why I have chosen to home educate and to do so following a ‘autonomous philosophy’ perhaps the details of Mollie’s educational background will be of interest to you.