Routines...

..it was definitely a routine thing rather than his voice!
Suitcase appeared today and M was insistent on saying "bye bye" to it.
Some may remember me attributing his regular and very violent meltdowns last term to being a change in routine (no suitcase, therefore no overnight stay at school) and perhaps it being his voice that he wants to be with peers. So, now he's in the new routine of no suitcase, it reappears and he says "bye bye" to it and I had to hide it in my room to avoid a meltdown... that definitely is a change of routine thing and not his voice saying he wants to be with peers. I don't doubt he will have a lovely night tonight with his peers (suitcase was sneaked on bus after him) but when the routine is to change again, I hope there is a good plan in place. I am so scared of going back to square one.
Some say we need to differentiate plans due to institutionalising children and routines. Those people should live through the effects of that, and then write their unfounded thesis'.

Don't be complacent

A lesson learned. I dared to think M had calmed but a change in routine resulted in a mega meltdown. Followed by an odd request for a shower mid afternoon. Those who know M know that's almost unheard of. Hesitantly, I obliged. Showers alone can cause eruptions. He was so calm throughout. Small giggles at our usual games that I use to try and make showers a positive experience. It felt as if he knew he needed the experience to calm. I don't know if it was sensory or something else but it worked. 

After, he went about his day, tired and a little grumpy but I knew he was "OK". 

I was left drained. I'm so pleased M has a Carer tonight. Time for an aching arm that took the brunt to rest. Time to recoup. 

I love my boy with all my heart but sometimes it just breaks that heart.  It's actually more painful to think how M feels about something he cannot control. I simply can't imagine how he feels. Anything I feel pails into significance.  If I could trade, I would. 😢

Autism Awareness month............

All too aware in this house, especially this year!

It helps that I am trying to understand him but it very nearly ripped us apart..physically and emotionally.

So I'm not going to write a massive awareness blog... I am just going to share a picture I painted of "M's world" It maybe says more than I can.

Another big decision...

So I've been on a bit of a journey this year... In my head. If anything good has come from the crisis recently, it's realising I can do what I want and should not feel guilty, thus choosing the wrong path, out of that guilt. 

Going into healthcare after M has left home was out of guilt. I still want to use my experience to help others but the only real way that can be done is not on the shop floor. I have seen the restrictions in the current service provider climate despite the best and genuine intentions from professionals. I will always continue to help and support my friends and local initiatives. 

As part of self preservation most of you will know I have rekindled my passion in Art. I have a lot to learn but I am loving it. I have enjoyed escaping into a creative world. I have enjoyed making people smile along the way. I'm not ashamed to say it has boosted my confidence and self esteem. This is where selfish me has emerged. I don't know where it will lead me, but I have a month to get my portfolio up to scratch.. For an interview.. possibility of studying Art and Design at the local college. Just a little bit excited! 

Purple day. Epilepsy awareness day.

Today is purple day for epilepsy. 

Regular followers of my blog will know how the ketogenic diet has been our miracle. But I will never lose sight that it might stop working and the horror that is epilepsy. 

My "on this day" on social media is a reminder as I read of posts from years gone by. This one from two years ago today says a lot: 

All morning I have been spamming your feed with posts about epilepsy and purple day. If it helps just one more person understand it a bit more, then its good.

This post is a personal account of how it effects M. The seizure monster as it is un-affectionately known decided in 2007 (maybe before but undiagnosed) to plant its evil self in dudes brain. It began with what are known as absence seizures.... look like daydreams. And then one night he had his first tonic clonic. this is the one most people would associate with epilepsy...the one where the person shakes amongst other horrible things. This prompted further testing and eventual diagnosis of a seizure condition. Originally thought to be caused by a neurodegenaritive condition but now believed to be due to a mix of all his diagnosis. Thus began the rollercoaster of medicines to try and get his seizures in control. OMG, how frustrating is that process. Every new med suggestion gives you hope... till the seizure monster just laughs at it and continues to attack my beautiful boy. His seizure condition has progressed and is still uncontrolled. He has nocturnal tonic clonics. daily absences. He also has complex partials...these can be where just one arm has involuntary movements, or a lip quiver, or eyes going off in their own direction..can manifest in any given way. he has drop seizures. Just drops to the floor. he has atonic... he can go floppy and unconscious without warning and prolonged.  Recently he has added gelastic seizures to the mix. these are extremes of laughter or crying or both. We are about out of options for drugs for seizure control and are considering VNS or ketogenic diet.

Heartbreaking. 

Last year I had to resuscitate him.due to a seizure.... no mother should ever have to do that to their own child. Doesnt bear thinking about what might have happened if I hadn't had some first aid training. Epilepsy can kill. I very nearly saw this first hand.

Epilepsy means carrying around of controlled drugs, being prepared for anything at any time... dreading going into your childs room of a morning if they're quiet. 

I never get used to his seizures... each one rips a piece of my heart away... each one takes a little bit more of my boy away.

I urge everyone to make yourself aware of seizures and epilepsy and first aid... you may just save someone's life... someone's son.

#purpleday #epilepsyawareness 

Feel free to share...all awareness is good.

M's shoes

M's shoes. 

I see your tears fall silently, mum. I know how I am sometimes, makes you sad. It makes me sad too but I don't always know how to control it. Frustration fills my bones. I wish I could speak in the complexities of your language. I do try in other ways, but the expression sometimes manifests through hurting you physically. When I'm with others I sometimes feel like a pressure cooker. The world is full of noise. Sometimes noise makes me laugh but sometimes that noise fills me with discord. I become afraid. Pressure builds up. When in your company, I feel safe. Safe to pop. I do pop. A cuddle should comfort me but I feel restrained. I do try to calm myself. My washing machine spins. My head in tandem with it, calming me. I appreciate how you feed my need for same and routine, indulging my obsessions. Obsessions that stimulate and speak safety. I love how we laugh at the silliest of things. I know you try to understand my every move, thought and feeling. I know if you could walk in my shoes and make it right, you would.

Sotos Syndrome research need's YOU!

https://medium.com/@claire.williams/can-you-help-with-a-sotos-syndrome-study-d9608f5d4940#.viy4rhju7

Can you help with a Sotos Syndrome Study?

Chloe Lane is studying for a Ph.D. at the University of Sheffield. She is looking for both children and adults with Sotos to take part in a research project to find out about the cognitive abilities of individuals with Sotos Syndrome.

The study will involve using a number of different tasks to measure abilities such as remembering information, understanding a conversation and making patterns.

All individuals who take part will be given detailed feedback about how well they performed in each of the tasks and this report can be given to teachers, employers or anyone else who would benefit from having a clear understanding of the cognitive strengths and weaknesses of the affected person.

She is hoping to recruit as many people as possible so that we can gain a really good understanding of the cognitive profile of Sotos syndrome. Once the research has finished, she intends to produce a detailed overview of the findings which can then be given to schools. This will help teachers to understand what to expect from a typical Sotos child when they first start school or move to a different school. For more information or to take part please click here. You can also email Chloe who will be happy to answer any questions: clane2@sheffield.ac.uk.

Establishing the Cognitive and Behavioural Profiles of Sotos Syndrome

Thank you for your interest in our research. We are currently recruiting adults and children with Sotos syndrome. Taking part in the study will involve completing a number of different tasks designed to measure abilities such as remembering information, understanding a conversation and making patterns. The study will take approximately 60 minutes to complete and regular breaks can be taken if necessary. This part of the research is only open to families in the UK.The second part of the research involves completing an online questionnaire. The questionnaire is designed to measure personality and behaviour in individuals with Sotos syndrome. This part of the research can be completed by families from any country. The minimum age for the study is 2.5 years.
Once this form has been completed, you will be sent a full information pack and/or a link to the questionnaire. Completing the form does not commit you to taking part in the research and you are under no obligation to participate. The study has received ethical approval from the Department of Psychology, University of Sheffield and is being supervised by Dr. Megan Freeth and Dr. Elizabeth Milne. The details you enter will be stored safely in an electronic database which is only accessible by members of the Sheffield Autism Research Group. We value your privacy and no details will be passed to any third parties.
If you have any questions, please email: clane2@sheffield.ac.uk