Autism and Shaving

I can honestly say that I have been absolutely dreading the day we needed to approach the subject of Neil and Shaving. I knew it would be coming soon and it looks like that time is now..

For the majority of boys, shaving is one of those coming of age milestones in their life, that it signifies that they are growing up and becoming a man. However Neil isnt really relishing the idea of any of these changes at all, after all in his world change is not a good thing.. We have already had to approach many puberty related topics, from the likes of body odour, personal hygiene, the breaking of his voice, an abundance of body hair.. and I try to forget the conversation that was had about “morning glory”. He has already dealt with so many different age associated changes already and just as I thought we were done for the time being it would seem that we are now faced with addressing facial hair and shaving.

Now for me this seems to be the most difficult one to address as it brings with it a whole bunch of other issues. Firstly he doesnt like the look of this new facial hair, this physical appearance change just isnt working for him so he wants it gone. He also doesnt like the feel of it on his skin or when he touches his face which I can understand this, however the next hurdle faced is how are we going to deal with this.. Obviously we need to introduce him too shaving, or should that be Mark is going to have to introduce him to shaving? Let’s face it I’ve never been a teenage boy, Ive never needed to shave my face so I dont feel I am the most appropriate person to even attempt to teach him how to shave, and I dont feel that shaving my legs really counts.

Now shaving literally seems to be this complete minefield. Do we go for a standard razor or electric? What style of standard razor? How many blades? Will he like the feel of the shaving foam on his skin let alone the smell? Will he cope with the feel of the blade touching his skin? Will he cope with the feel of the blade pulling and and cutting the hairs? Is he likely to harm and cut himself given it’s a sharp blade? Will his motor skills affect him being able to shave? Would he be better with an electric razor? Would he cope with the noise of an electric razor, the vibrations that come from it or would they affect his SPD? There are so many questions, so many factors which I need to take into account.

The thing is when I question Neil to attempt to get any form of input all I get told is I dont know so what do I do? how do I even approach this? Where do I even start? Does anyone have any words of wisdom who has been in this position as I am at a complete loss.

The SenCo Meeting

Last week we had a meeting with Neil’s SenCo following on from the email which was sent just before half term raising his and the counsellors concerns about Neil’s current state of mind, emotional wellbeing and mental health.

Neil is seriously struggling with life at the moment and unfortunately it just seems to be getting worse. He is experiencing dark thoughts, a feeling of emptiness and as a consequence he has began self harming again. Its literally as if every ounce of happiness has been sucked out of him, he has stopped smiling, he has stopped joking and laughing, he has even stopped his annoying stimming which would always emerge when ever he was happy or excitable and it breaks my heart, I never thought I’d hear myself saying it but I would give anything to hear those silly noises again, to see him happy again.

Now I wont lie, it wasnt an easy meeting to sit through, no one wants to hear about how much their child is struggling but I know that it needed to be done, it’s also kind of a relief hearing that others are seeing what we are seeing at home too, that it’s always good to have everyone on the same page. Now the meeting was called because Neil has been seriously struggling at school, he also has been very disengaged with the school counsellor these past few weeks not wanting to engage or open up like he usually would in his sessions with her,  he has also said some things to her which have them concerned, the raising of his dark thoughts and self harm which of course for safeguarging they cant ignore and they have to act upon. Now the SenCo told us that because of this they had made contact with EWMHS (Emotional Wellbeing Mental Health Service) to ask for advice and assistance, this is protocol in this kind of situation and a move which I fully support, anything to get Neil the help he needs, however we had already beaten him to it… when he called them and gave Neil’s details to EWMHS they informed him that our own GP had already put in an urgent referral and that an appointment had already been arranged, see we are all on the same page… so we will be attending that appointment later this week.

Now just talking we all believe this has been a long time coming, that it has slowly been building up, however we are all of the belief that the pain he is currently experiencing because of the growth on his spine has just simply pushed him over. That because of his ASD and SPD he is struggling to process the pain, his thoughts and feelings and its just all getting too much for him and has literally tipped him over. Now until we see EWMHS later this week and the Spinal Surgeon next week there really isnt much we can do, apart from continue with his pain medications and support him as best as we can and be there for him. The SenCo is carrying out hourly checks on Neil throughout the school day, Neil also has passes which allow him to leave lessons without question if it all becomes too much so he can go to the SEN hub. You could say we all have Neil’s back at the moment. I just pray that EWMHS actually take us seriously and intervine as our previous experience with them wasnt a very positive one and now look where we are. I also pray the spinal surgeons do something, that 5 months of pain and a referral to the mental health team better be enough to be taken seriously otherwise this Mum will be on the war path and I dont think they want that!!

Meeting Jim Shore

So it’s no secret but I have a bit of an addiction… I am a total Disney Addict. My Mum offen refers to it as O.D.D, Obsessive Disney Disorder! However one of my biggest Disney obsessions apart from our vacations to Disney World would have to be a rather large collection of Disney Tradition figures, last count I have over 120 of them.

These figures are designed by an amazing man called Jim Shore and this past weekend I was extremely fortunate to be able to get to meet him on his European signing tour here in the UK. From 6:30am Mark and I qued up for over 7 hours with other fellow Jim Shore fans to get the opportunity to buy some new pieces, meet this amazing man, to talk to him and to get some figures signed by him and what an experience it was, totally worth the crazy early start and the long ques. I was like a child at Christmas.

I really am so lucky to have such an amazing family so that I could have that opportunity. Nin-Nin looked after the boys overnight whilst Mark drove the two hour journey up there the night before as he booked a nearby hotel, he also accompanied me to the signing event, waited and qued for hours with me, as well as treating me to several new additions for my ever growing collection. I’m so lucky to have him in my life. So that is a tick off of my bucket list, to meet Mr Jim Shore in person. Now I just need to find a home for all my new figures. I think I need a new cabinet

And the award for meanest Mum goes too…

So the boys are totally pissed off at me today and if they had their way I would probably be up for the nomination of the meanest mum award.. (ah well!)

Today is Halloween, October the 31st and although Halloween isnt really celebrated as much here in the UK as it is in the US I have always tried to make it a fun evening for the boys even if we dont go out Trick or Treating. Our boys are not really into the whole Trick or Treating malarkey. Neil cannot process the whole knocking on strangers houses, to him it’s wrong which I totally get that with him, after all we do teach our children not to talk to strangers so going upto and knocking on someone’s door kind off contradicts what we teach and he thinks that’s wrong, also Ethan really doesn’t cope to well with scary which there is always a risk of coming across and Grayson doesnt like the dark. Not the greatest candidates for Trick or Treating our boys are they. So usually to make it fun for them I would decorate the living room fireplace with Halloween decor, I woud buy in lots of sweet treats and put them in a bucket and we would turn the lights low and watch the likes of a Hocus Pocus and Nightmare before Christmas whilst tucking into the sweets and chocolate I had bought, a nice little Halloween tradition, well I thought.

However this year I point blank refused to celebrate, there were no decorations, no sweet treats and no Halloween movies and the boys have no one else to blame but themselves. Now there is a little bit of a back story to this, I’m not just being a totally heartless Mum…. last year whilst the boys were at school and nursery I decorated the fireplace, I had bought lots of sweet treats and I planned for us to watch movies like Casper, Ghostbusters, Hocus Pocus together. However Neil decided he didnt want anything to do with it and after grabbing a handful of sweets he disappeared off upstairs and Ethan and Grayson were more interested on playing on their tablets, all three of them were totally ungrateful for what I had done. There I was alone sitting on the sofa watching Hocus Pocus devouring an entire box of chocolate fingers to myself feeling rather disheartened given the effort I had put in to make this evening a little special for the boys and for what?.. so I vowed that this year I wasnt doing any of it, that we would not be celebrating Halloween, that I wouldnt be doing any of it and I followed through with it. Ethan and Grayson were not best pleased but I wasn’t giving in this time. They needed to learn.

101 reasons to wake Mummy up

Ok so it’s not quiet 101 reasons but last night Grayson was being a little asshole. I lost track of how many times I had to get upto him between 10:37pm and 4:51am when he finally crashed. Of course Daddy was oblivious to any of it just like always as he laid there snoring away! The thing is after 6 hours of it I was still none the wiser to why he kept getting up and coming in. He wasnt poorly, he wasnt scared, he wasnt hot or cold, it seems he just decided to take on the role of insomniac for the night and thought it would be fun if Mummy joined in too. He literally kept coming out with the most ridiculous excuses each time that he came in..These are just a few of his excuses last night:

“Its too dark” – No Grayson it’s not dark, the hallway light is on, you can see so it’s definitely NOT dark.

“There’s a tapping noise coming from upstairs, I think it’s a ghost” – That is the boiler in the loft Grayson, you know that because I’ve told you that a million times before. It makes that noise every so often when the heating is on.

“It’s too windy outside, the winds being too noisy” – I can’t control the weather Grayson.

“Ethan’s breathing too loud he needs to stop” – No you don’t want your brother to stop breathing because then he will be dead!

” I’m scared I won’t wake up in time for school and I will be late” – Grayson it’s the half term, you don’t have to go to school tomorrow.

“I don’t want to go to school tomorrow” – Huh? Did you even listen to me earlier. Its half term!

“My *mumbles* hurts” – We never determined what *mumbles* was.

“I cant find Meer Meer” – Your soft toy? Your holding it right there in your hand.

“I cant find my socks” – You took them off before you came upto bed Grayson.

– “I’m think Im hungry, can I have Hula Hoops” – Its 2am go back to sleep!

” I don’t know what time it is” – All you need to know is it’s dark outside so you should be asleep.

“Can I have Popcorn in my packed lunch?” – Yes when you go back to school on Monday.

“I wish my hair was brown” – Go back to bloody bed!

“Can you fill my water bottle up?” -Grayson its still got water in it

” Can we see the Adam’s Family at the weekend?” – No Grayson not if you don’t go back to bed and go to sleep

– I’m scared of the window” – Really? It’s been there for the past 2 and a half years and not been an issue before.

“you know father Christmas…” – go back to bed

“I thought I saw a hedgehog under Ethan’s bed – I actually laughed out loud at that one.

” I can hear my heart!” – Thats good, it means your alive.. (as I mutter “for now” under my breath joking)

Now these are just a selection of his excuses last night, after about the 8th time of coming in I thought I would document them knowing I would no doubt blog about them here and might actually laugh at them after I actually got some sleep.

A feeling of helplessness

As a parent one of the worse feelings in the world is when you cant help your children, when you cant stop them from hurting, when you cant take that pain away, it’s even worse when that child is on the spectrum.

Neil is seriously struggling at the moment, emotionally, physically and mentally. This pain he is experiencing because of the growth on his spine is having such a negative impact on his life, the appointment for the spinal surgeons in November cant come quick enough as something needs to be done. I’ve noticed a deterioration in his mental health over the past couple of weeks and unfortunately these concerns were echoed last week when I received a late night email from the school SenCo. Both he and the school counsellor that Neil has been seeing on a weekly basis are extremely concerned. She has noticed a dramatic change and Neil has said a few things to the counsellor which have her concerned.

In all honesty this isnt a surprise to me, this pain he is in is really impacting Neil’s day to day life and emotional well being.. Its making him more emotional, he is struggling to control his feeling and its bringing on more meltdowns because Neil simply cant cope with the pain. Its also stopping him from being a 13 year old boy from being able to go out and do fun things because he either physically cant do the things or he cant actually deal with the car journey to get there, things like going to the cinemas, playing at the park, going bowling or to the trampoline park all cause him great pain. Analgesia and anti-inflammatories seem to be doing very little and he is just struggling. He has said on several occasions he feels empty and he keeps having dark thoughts which he knows are wrong but he just cant help and they wont go away. The thing is I can see he is in a dark place and its heartbreaking to see.

After we received the email Mark and I talked and agreed to try to get an urgent appointment for Neil with our own GP the next morning, to go and talk to her. Now I gave her a brief overview of what’s been going on but unfortunately Neil was far from receptive at the appointment so she asked him if he would prefer to go outside with Dad whilst she had a chat with me. In all honesty I prefered this, I could talk more openly and honest with her about what’s been going on without Neil in the room with us and I didnt need to worry when the tears started to flow.

She was so caring and understanding and agreed that Neil definitely needed some intervention and that she felt that the pain could very well be the route cause for all of this which I totally agree with her, it’s been getting progressively worse since the summer when this all started. We discussed his current pain medications and she decided that she would like to put him onto a stronger analgesia, that it’s not something she would usually do but the pain needs to be addressed. We then discussed his self harming, his dark thoughts and feeling of emptiness, she asked lots of questions and she said that she wantd to do an urgent referral for him to see a psychologist. There was talk that he may need to go onto medication which I’m not thrilled about but I will keep an open mind for the time being until we see the psychologist, we need to do something and someone needs to help him as we are all extremely concerned for him and we dont want to see him get any worse, we just want our Neil back.

So now it’s a waiting game as we wait for his appointment to see the spinal surgeons in November and wait for this referral for the psychologist to come through. The thing is the fact this growth is now causing Neil to be referred to EWMHS because its effecting his mental health then the surgeons are going to have to do something!

I’ll give you daylight saving

So last night the clocks went back an hour due to daylight saving. Now many people go on about how the clocks going back an hour is a good thing, that it means you gain an hour so get to have an extra hour in bed. Yeah right! These people obviously do Not have children! Ethan and Grayson obviously missed that very important memo about how they could have an extra hour in bed and how much Mummy would really have liked to take advantage of an extra hours sleep this morning. I even changed their clocks in their bedroom to try to trick them but it didn’t work. Instead of waking up at 6:45am the boys woke Mummy up at 5:45am and all she gained was an extra hour of listerning to Ethan and Grayson arguing over what to watch on TV. Lucky me!

Failing at life

Yesterday morning in the school playground a Mum friend approached me and as she stood there in front of me looking me in the eye she told me that I looked tired. My automatic response? to just laugh it off, to put a smile on my face and to make out as if everything is ok..  but the truth in the matter is that it’s not ok, that I’m not ok, that I am tired, in fact I am absolutely bloody exhausted.

I am seriously struggling at the moment and I feel as if I am failing at this parenting malarkey and at life. I have a hundred things running through my mind, so many worries and concerns, so many things that I need to do or get done and the picture I’ve created represents just a small percentage of what going through my head at the moment.

There are dishes stacked in the sink and piled up on the counter because the dishwasher is still broken and we havent had the time to go out and buy another. There is a ever growing pile of dirty clothes which still need to be washed, another large pile that are waiting to be ironed and there are ironed clothes that have been done still hanging on door handles waiting to be put away. The house is a complete tip because I havent had the chance to tidy or clean it in days and I know that I need to but the fact is I’m struggling to keep on top of it all with everything else I need to do. I have so much I need to do but there are just not enough hours in the day.

The thing is I look at other parents around me and I see that they have got all there shit together, that they can make it work so why the hell am I struggling so bloody much? I just don’t know how much more I can take. Negativity is consuming me. I’m trying so hard to keep everything together but everyone seems to want something and its draining the life out of me. I try to keep everyone else around me happy but the fact is I am neglecting me.

I literally feel like a crappy Mum, a crappy Wife, a crappy EVERYTHING

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Sibling Rivalry

So yesterday evening Ethan came upto me all serious like and told me that he knows what he wants for Christmas this year, the thing that he will be telling Santa he wants when he sees him and what will be going on the very top of his Christmas list… “What is it?” I asked him? intrigued, wondering what on earth it was that he wanted so badly but nothing prepared me for the response that he gave me… Ethan wants a Lie Detector! Yes a Lie Decector and not a toy one either a REAL one! His reasoning? So he can prove when his brothers are lying! and I get that. Only half hour before Grayson had come running into the kitchen telling me that Ethan had hit him and not far behind Ethan was following loudly protesting his innocence.

Now since I was a little girl I always envisaged that when I was older I would find myself outnumbered in a house full of testosterone, that all I ever wanted were boys and just look at me now. I am the mum of three boys and a man-child, lucky me! The thing is I can totally see where Ethan is coming from, I get it and his suggestion of a lie detector isnt that far fetched. Parenting three boys can be challenging, it can also be joyous, frustrating, emotional, gross, annoying, amazing and exciting and at time’s its kind of like being on a rollercoaster and where I just want to get the hell off that ride, unfortunately though no matter how crazy that ride gets I just have to hold on for dear life and hope I make it out the other side unscathed.

One minute these kids adore each other, they are the best of friends and have each others backs, the next they detest each other, that they have become mortal enemies and cant stand to be in the same room as one another let alone breathe the same air. This is where the sibling rivalry tends to come in to play as brothers try to compete, try to outdo one another, purposely trying to wind up the other and get into their head, purposely trying to get the other into trouble by accusing the other of being a liar and the other is denying it. I suddenly find myself caught in the middle refereeing the two of them and let’s not sugar coat this, there are also times when words dont seem enough and it turns physical, when the rough and tumble isnt just rough and tumble anymore. When they act as if they are going to fight to the death and I’m actually tempted to just step back leave them to it.

The other day we couldnt even go out without some sibling rivalry drama. Who knew that who presses the bloody pelican crossing button could cause such drama when going to cross the road. As we approacd the crossing Grayson got in there first to push the button because Ethan was being a slow coach as per usual, of course this was enough for the full on amateur dramatics from Ethan. “Its not fair, I wanted to press the button, Grayson always pushes the button. I hate him, he is mean”. There were tears, there was feet stamping and whilst I’m standing there trying to diffuse the situation the little man on the crossing has gone from red to green and back to red again. I mean seriously.

And as I sit here I find myself wondering whether this sibling rivalry will ever actually end or whether I’ve set myself up for a lifetime of it. How do others deal with this? I try to stay neutral, I only get involved if I really need to, I dont take sides. But it’s so frustrating. Why cant they just play nice, just like I envisaged when I only wanted boys when I was a little girl. I wonder if I’d feel the same if I knew what I know now back then

Trying to tell the difference

Having a teenager with ASD can be so confusing. There are times where I find it so difficult to distinguish between what’s his typical ASD behaviours and responses, what would be considered typical teenager behaviour and what’s hormones. I wish there was a user manual for this kind of stuff as I’m currently walking uncharted territory here