2563 days, give or take a leap year, is the amount of days since The Lodger was diagnosed with Prader Willi Syndrome.
It's been quiet on our blog (apologies) but it has definitely not been quiet in our lives. Update the blog has been on the to do list since May but sometimes things get in the way and sitting down to write a blog post does happen but it just doesn't get finished but we're back now!
The Lodger recently turned seven years old. I can't believe it either.
I always find during this time of year that I look back to those first couple of weeks of The Lodger and compare him to where he is now.
Just the other day, he told me he was bored playing, the joys of summer holidays, so I asked him did he want a job.
'Yes I do' he replied.
'Ok, how about hoovering the house?' I asked him, fully expecting to hear a negative response but much to my surprise he said yes.
Did I ever think that tiny baby who couldn't cry would be hoovering the house seven years on.... not a chance.
A few days after we received and fell into the grief pit of getting a diagnosis, we were in NICU with The Lodger and his doctor told us that yes he has PWS but he isn't PWS and won't be PWS. It's now a line I share with parents who receive a diagnosis of PWS for their baby because it's true.
The Lodger is much more than PWS.
He's the Lodger, a person who just happens to have PWS.
Does having PWS make life hard for The Lodger and Us? Yes, sometimes. Not all the time but sometimes. Our life with PWS has become our normal. It's The Lodgers normal too. It isn't him but it's part of him and because of that, there's certain things we as parents need to do. It keeps The Lodger happy and feeling safe... and it's not just the vitally important consistent food rules.
I was both looking forward to and dreading the summer holidays. The Lodger strives on routine. Routine is everything and if the the plan of the day changes, anxiety takes over. It might even be something he will genuinely love and look forward to but anxiety is cruel, it manifests itself in questions, thousands of questions, the need for reassurance, the need for alot of distraction, emotional moments and did I mention the questions?
One of the house rules is don't tell The Lodger anything. If something exciting is happening on Thursday, we will tell him Thursday morning. If he gets wind of something that is happening, he'll ask when and I'll say 'O that music festival, not for ages... like ages away. We don't need to talk about it now. I'll let you know when we can talk about it nearer the time!' Currently, it works for us.
We were lucky enough to be able to take part in a research project about having PWS and being flexible. I can't thank the researchers enough. It was perfect timing. Infact luck was really on our side back then. I should've played the lottery.
Through playing a game, The Lodger over the two weeks learnt to be flexible and even though the project is over now, we are still implenting it at home in our own way. The game rewarded The Lodger with a video of a dancing cat for being flexible...so that's what we do now. If we need to ask The Lodger to be flexible, if we're changing a plan or something unexpected happens, he gets rewarded with us being dancing cats.
Did I think seven years ago that I'd ever have to pretend to be a dancing cat, so that my son could handle a challenging situation? No, I can say honestly say the thought never crossed my mind. When you're in the grief pit googling PWS, it's not something you come across.
So if you're a parent of a younger kid with PWS and you're reading this, believe me when I say that when I'm pretending to be a dancing cat, I'm happy. I'm so proud of my child in that moment. Flexibility and changes are really really really really hard for him, so when he says Ok to the change and says 'Mum, dancing cat please.' I'm happy! I'm over the moon, give that kid a medal kindof happy.
We're all creatures of habit and one day at breakfast, The Lodger said 'Mum, I'm going to sit in your seat today but don't worry, for being flexible, I'll do the dancing cat for you!'
And then, there he was doing the dancing cat and saying 'Mum, I'm so proud of you. Well done Mum on being flexible!' with the biggest smile on his face, giggling away.
The Lodger makes me laugh!
Who knows what we'll end up doing in the next seven years or even the next year to help The Lodger with tricky things but we'll be doing it, helping him through whatever the next PWS curveball will be. It takes tremendous teamwork everyday and not just from The Lodger and Us but the extended Us too, the 'thank you for being there' family and friends. We're 2563 days in, The Lodger is happy and healthy and we're happy and healthy too!
It's been quiet on our blog (apologies) but it has definitely not been quiet in our lives. Update the blog has been on the to do list since May but sometimes things get in the way and sitting down to write a blog post does happen but it just doesn't get finished but we're back now!
 |
| The Lodger at his 7th Birthday party |
The Lodger recently turned seven years old. I can't believe it either.
I always find during this time of year that I look back to those first couple of weeks of The Lodger and compare him to where he is now.
Just the other day, he told me he was bored playing, the joys of summer holidays, so I asked him did he want a job.
'Yes I do' he replied.
'Ok, how about hoovering the house?' I asked him, fully expecting to hear a negative response but much to my surprise he said yes.
Did I ever think that tiny baby who couldn't cry would be hoovering the house seven years on.... not a chance.
A few days after we received and fell into the grief pit of getting a diagnosis, we were in NICU with The Lodger and his doctor told us that yes he has PWS but he isn't PWS and won't be PWS. It's now a line I share with parents who receive a diagnosis of PWS for their baby because it's true.
The Lodger is much more than PWS.
He's the Lodger, a person who just happens to have PWS.
Does having PWS make life hard for The Lodger and Us? Yes, sometimes. Not all the time but sometimes. Our life with PWS has become our normal. It's The Lodgers normal too. It isn't him but it's part of him and because of that, there's certain things we as parents need to do. It keeps The Lodger happy and feeling safe... and it's not just the vitally important consistent food rules.
I was both looking forward to and dreading the summer holidays. The Lodger strives on routine. Routine is everything and if the the plan of the day changes, anxiety takes over. It might even be something he will genuinely love and look forward to but anxiety is cruel, it manifests itself in questions, thousands of questions, the need for reassurance, the need for alot of distraction, emotional moments and did I mention the questions?
One of the house rules is don't tell The Lodger anything. If something exciting is happening on Thursday, we will tell him Thursday morning. If he gets wind of something that is happening, he'll ask when and I'll say 'O that music festival, not for ages... like ages away. We don't need to talk about it now. I'll let you know when we can talk about it nearer the time!' Currently, it works for us.
 |
| The Lodger at his first music festival! |
We were lucky enough to be able to take part in a research project about having PWS and being flexible. I can't thank the researchers enough. It was perfect timing. Infact luck was really on our side back then. I should've played the lottery.
Through playing a game, The Lodger over the two weeks learnt to be flexible and even though the project is over now, we are still implenting it at home in our own way. The game rewarded The Lodger with a video of a dancing cat for being flexible...so that's what we do now. If we need to ask The Lodger to be flexible, if we're changing a plan or something unexpected happens, he gets rewarded with us being dancing cats.
Did I think seven years ago that I'd ever have to pretend to be a dancing cat, so that my son could handle a challenging situation? No, I can say honestly say the thought never crossed my mind. When you're in the grief pit googling PWS, it's not something you come across.
So if you're a parent of a younger kid with PWS and you're reading this, believe me when I say that when I'm pretending to be a dancing cat, I'm happy. I'm so proud of my child in that moment. Flexibility and changes are really really really really hard for him, so when he says Ok to the change and says 'Mum, dancing cat please.' I'm happy! I'm over the moon, give that kid a medal kindof happy.
We're all creatures of habit and one day at breakfast, The Lodger said 'Mum, I'm going to sit in your seat today but don't worry, for being flexible, I'll do the dancing cat for you!'
And then, there he was doing the dancing cat and saying 'Mum, I'm so proud of you. Well done Mum on being flexible!' with the biggest smile on his face, giggling away.
The Lodger makes me laugh!
Who knows what we'll end up doing in the next seven years or even the next year to help The Lodger with tricky things but we'll be doing it, helping him through whatever the next PWS curveball will be. It takes tremendous teamwork everyday and not just from The Lodger and Us but the extended Us too, the 'thank you for being there' family and friends. We're 2563 days in, The Lodger is happy and healthy and we're happy and healthy too!
 |
| The Lodger sea swimming! |
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