Change

Hey readers,

My word of the week is:

This is because I've had a couple of changes and that something I struggle with. but hey go carry on and all the stuff. 

My youngest had an awful cough and was sick because of the mucus. His temp was also up and on Monday he was like death. So he had a couple of days to recuperate.  

Also, this week both my boys had the opportunity of parents coming to have lunch with them. Sadly my youngest was sick but my eldest was fine so he had the choice of mummy and daddy. 

So he picked me eek was expecting that. Still, even though my anxiety was through the roof I did it by myself so was that slightly nerve-wracking. my eldest was also very tense and anxious so I something to focus on to try and keep him calm. 

He also is not good with the change to routine and he doesn't like the noise which was a lot more now that there were more people than normal in the dinner Hall. 

Anyhow, hope you have had a good week 

Cheers for reading. X

Things not to say to an autistic person.

Hey readers,

As a person with autism, it can be frustrating at times talking to people about my condition as they have these preconceived ideas about what it must be like for me. Here is a list of things that I think don't need to be said to an autistic person like myself.

1.  You don't look autistic?

I got a feeling that a lot of autistic people have had this said to them. It is so frustrating because assume autistic people either sit and rock in a corner somewhere or are Rain Man, which I am neither extreme. Autism is a spectrum condition and it affects people differently and at different times. Not to mention that autism is constantly fluctuates depending on the circumstances and mindset of the person with autism.

2. Rain Man.

Like I said above some people assume you are Rain Man or you can excel in maths or computer studies. Yet again this is not me, I am not really good at either and enjoy fashion, ummm what about then.

3. Girls.

The amount of people who think autism affects only males is shocking. Ok, the thing is with the whole diagnosis is it is a bit outdated let's be honest. 

When we look at the criteria it is hard to see the complexities as its focus on certain characteristics and autism does not always correspond in that way. Because girls get diagnosed a lot later than the male counterparts they have to survive and that is where masking comes in, hence why they say girls are better at it, but that is one of the reasons why. 

Masking is basically mimicking the behaviour that the individual has observed someone do. The downside to this coping mechanism is that it is restrictive behaviour. The autistic person is not able to adjust if something changes because again you haven't learnt that pattern. The changes are you don't know what you are doing just basically blagging in order to try to fit in. I know because I still do it now and fail often.

4. Adults and autism.

A classic assumption is that children, once they reach adulthood magically, do not have autism anymore. People believe that the condition just vanishes overnight and the person when they reach adulthood can somehow function normally. 

However, I can assure you that this is not the case as autism still affects me and many more autistic adults. Autism is a condition that you have for the rest of your life, though you can create coping mechanisms to help manage living in a neurotypical world. 

I think this assumption is down to the fact sadly that there is little information or research was done on adulthood, yet but I feel optimistic that in the future there is more awareness about autistic adults.

5. Empathy.

People assume that a person with autism is cold and has no empathy. Yes, we do struggle with emotions and putting emotions in the wrong context etc. However, there have been times when I have been too empathetic with someone and literally felt their pain go through my body.

6. You can't have relationships. 

Yes, relationships of any variety are hard but I am married still going strong and raising two boys. It can be done with a lot of patience and understanding, it does not come easy and definitely not a smooth ride but if you work at it then it can be obtainable. 

Cheers for reading X

Being an autistic mum at school.

Hey readers,

Today I feel defeated once again. Once again I feel like I have let my children down in the fact that I can't perform as good as the other parents. I have decided to say no to going to school assembly because it is too much for me and my autism. 

I will confess that I hate my children's assembly which is held every Friday morning. I have done it for over two years and now I admit defeat. It is getting more crowded with classes and my senses are getting worked up. 

I get sensory overload as a result of being autistic. I get it really bad and sadly attending assembly is just unbearable. I feel rubbish because I wanted to be this perfect parent but I am not. It is making me feel physically sick from being exposed to the bright lights, the noise, the anxiety and the general chaos of kids coming and going. 

It appears I suffer from motion sickness, only recently has been bothering me. Therefore when kids run to take a sit and go past to go back to their class my head is in a spin. Don't get me wrong nothing personal, I think kids are great and much prefer them to adults - simple and you know what you are getting. 

Sadly, I don't mix well and occasional can be found to put my foot in it. I notice now that parents in cliches and chat. It hurts me because I feel rejected and the black sheep. Ok, my husband is here but I full well know next week when I am not he will be one of them. Yes, I am envious that he can jel and be a normal person, where I will always struggle. 

With having a disability that affects my parenting and stops me from doing things I am constantly trying to compensate for this as a way to balance it out. I don't know why because to be honest my kids love me, they understand and we discuss my autism. 

My eldest completely emphasises and never says a bad word. He has potential autism and that is the one good thing in a way is that with my autism I have inside knowledge and can help him in some areas. Just don't expect me to deal with emotions and relationships because that is not my area of expertise. I am practical-minded, I can come up with things to do that can distract him but if it is grey then I fail yet again. 

It is non stop guilt for me not being good enough. I know it is only me and I put this pressure on, maybe I care too much and have high expectations. I just wish I could drop them because I love my children and I am very proud of them with whatever they do. But we all have our limits and I am designed differently to most parents. Maybe one day I will find a way to drop this horrible guilt when I can't do something. 

Cheers for reading X 

Sensory autism wish list.

Hey readers,

I am autistic (if you didn't know, I just put it out there!). One thing that helps me is some sensory depending on what the item is. I find sensory items really beneficial and can be a real comfort especially when I am feeling really anxious. So, here are some products that if I had the money I would definitely buy them, till then I just wish for them.

1. Weighted blankets.

Can't start without mentioning the ever popular their ever so popular weighted blanket. I love the feeling of heavy material (I sleep most nights with a quilt, a throw and two sleeping bags, I sh*t you not). I just feel secure when I feel that entrapment on my body, I feel like I am in my own little bubble, especially when I am going through a meltdown a weighted blanket would benefit me a lot. I picked this one because it looked well made. The fabric looks super soft and comforting.

2. Sensory light explosion prism.

I respond very well to low, soft lighting. I am very hypersensitive to lights so it works for me. I really love this sensory light explosion, it looks amazing and the colours are subtle which I appreciate a lot. I don't like really bright lights as they trigger headaches and make me quite stressed due to the sensory of it. This explosion light is 3D and it also changes colour. This light would be a great distraction especially when I go through obsessive thinking and it could help calm me down when I am anxious.

3. Massage Mat.

Basically, this item is a massage mat with Five 12v motors inside a padded mat. Choose different combinations of speeds with the hand-held controller. I like the idea that you can control the strength and there are different settings depending on performance. Personally, I am not a fan of soft tough so I would 100% be hitting the hardest speed because I respond well to really strong and firm movements.

4. Large liquid filled sensory floor tiles.

Now if you have even been to a soft play then you may have come across these sensory floor tiles. I have been lucky too and love them. I think they are amazing to play with, lovely colour arrangement and just all round great tactile product.

5. Giant bubble tube.

I have wanted a bubble tube for so long now. I think they are stunning with colour movement and so calming. They would really help especially if you had a sensory room (that would be the dream right there). The tube has different soothing colours along with bubbles to relax anyone. It absolutely transfixes me for hours as I love light shows to calm me when I am hypo anxiety and would definitely benefit along with my eldest - which  I could imagine both of us together sitting watching it.

Cheers for reading X

How to deal with an autistic burnout.

Hey readers,

Some people may not be aware but I am autistic (I was diagnosed as a child with Asperger Syndrome). One of the things that a person like myself experiences is a thing called burnout. An autistic burnout can be short - as an experience of totally, exhaustion every week as I have two boys who go to school and that for me with all the social interactions is mentally exhausting. Short term burnout is what it says on the tin, I feel tired and very exhausting.

Tend not to get very motivated and just collapse on the sofa for a few hours or sleep to recover from all the mental processes because when you are autistic a lot of things are scripted (rehearsed or memories to help deal with a social situation) probably hence why can't cope with a new situation as I haven't got a coping strategy for it. I digress.

Long-term burnout is more severe in the sense of that it last longer and it can have long-term impacts such as regressing. For me sometimes when I have long-term burnout I regress, I can't cook, communicate probably or leave my home by myself (these are a few examples). It is basically I believe where I just had enough of constantly doing something over a long period and I just shut down because it is exhausting, to say the least.

So, how do I cope with burnout, well here are some ways that have helped me?

I suppose the most obvious one to help reduce the burnout feelings in to rest and you would be right. Rest is so important just to have that break to breathe and not focus on too many stimuli has really helped me. Also, keeping things simple and do things that help me relax like reading a book or listening to music.

When you have suffered a burnout you can beat yourself up especially when you have you have commitments like being a parent, you want to do your best so your build self up when you don't meet the expectations. No one is perfect and something that even now I still learning and that is it to be kind to myself.

This may help some people, it does for me but after a period after resting from burnout as I generally struggle to put my thoughts into words after the immediate event. It is ok to take your time and speak to someone if it helps you.

Like I have said previously to help rebuild your strength you have to start slowly and build from that. I have in the past wanted to go and too much which actually just sets you back further. Taking my time and doing things at a slower pace is fine. I used to be also on the go and feel that is what I had to do but mindfulness and allowing a slower pace has made a tremendous impact on my health.

Finally, writing down triggers to find out ways that help reduce or eliminate the triggering behaviour works for me. I am a bit of a sucker for a solution, sometimes we don't have a solution and that is ok, just focus on managing the situation the best you can.

Cheers for reading X

i have accepted I am on anti-depressants for the rest of my life.

Hey readers,

Let me tell you a little secret about me, I take anti-depressants. I have on and off them for years. I have been on my present pills since 2010.

I have to accept the fact that I am going to be on them for the rest of my life and that is ok, I have no shame. It is ok to be on anti-depressants if you want them, don't feel bad because they are viewed as a quick exit. Of course, they don't cure my mental health problems but they give me a breather to think more clearly and make better decisions which impact my life on a whole for the better.

I have tried to come off them because I was better but wasn't turned out to be more crippling and forgot what them nasty feelings were like. I don't like them, I don't want to live and I go to a very dark place, which is horrible to experience. I don't want that in my life and if there is something that can help then I will grab it happily now with two hands.

Let's be frank anti-depressants don't remove the mental health. They are a quick solution because they in a short space of time have an impact and you can see improvement. Of course, tablets aren't the be-all and end-all but they help.

Talking also helps and all the other therapies that you can access. That too is ok to do and you have to do what is right for you. People are quick to judge if you dare say you are on anti-depressants, you can often get the mentality of some people who assume you are a drama queen and just taking them because they are trendy. Maybe more people take them and be honest about it means that people actually do suffer from mental health problems and not just physical health. I don't see anyone having a go out a person with cancer taking their medication - if anything more sympathy and understanding.

I think some people assume that if you take antidepressants somehow you are weak because you can't sort out your life and you rely on something other then yourself to get out of the situation. This is not true, having the courage to step up, go to the doctors and seek help is much braver then most people think.

I felt ashamed for years and forced myself off medication when really I should have been on it. It would have improved my quality of life. I fell down the hole of despair of feeling rubbish to take some pills to help my state of mind

Not any more, I now lucky have to come to the realisation that doesn't matter what people think about pills. My happiness is more important and doing the best to help me should be a priority. Accepting tablets are absolutely fine and if I have to take them the rest of my life so be it, no biggy it is ok to take medication to help improve your health.

Cheers for reading X

Cycles

Hey readers,

I am writing this whilst I go through a hyper-focus period. I can't sleep, my mind is so wired. Instead, I am writing this post whilst listening to old David Bowie interviews - just off the record such a good interviewee and has really interesting thoughts.

Anyhow, I feel like I go through periods in my life where I experience different types of emotions and states of minds. I guess we all do but for me and my autism, it feels stronger and less diluted in the intensity.

When I get to the start of by an obsession of me and it causes me to be I go in lockdown and want to know everything there is regarding that obsession I have. The types of obsession I experience is fact-based such as a person like David Bowie or the Victorian era is my current recent one. I fixate on a person more the mechanisms of the history of their legacy as it were. I watch and read loads until I get something else stuck in my head to obsess. However, this period is short lived until I have exhausted myself out of all the information possible that I can find or I get bored and move onto another obsession. I also notice when I start my obsession I tend to have a lot of uncertainties around me, it feels like comfort and something to focus on that is solid rather the very uncertainties of my life.

However, there comes a point where I lose sleep because I have too much energy that I basically need to burn off in order to get back the equilibrium in mind settings. Which again is very common for someone with autism I have found when reading about other peoples experiences on the topic of obsessions and autism.

After I have allowed myself to be recuperated I get a send of under-stimulation - which personally is worse than over stumbled because I feel more alive when I am wired then bored and need something to focus on.

This pattern repeats itself unless I am depressed or suicidal (don't worry this has happened a handful of times) I tend to be more of a moper and feel sorry for myself. It takes a lot of energy to keep on top of my emotional health. 

The energy supply can only last so long. It is something I have to keep on check or else I get burnt out or have a meltdown, the latter is worse because it is emotionally drained. At least with a shut down I literally do that and not use any energy to do anything else but hide away for a while in my room until I have the energy to get back up and carry on again. 

So, that is where I am at. I get frustrated at times because I see people who are bobbing along Inn the middle.i just feel I am fighting between two extremes. I guess that is just the way that my brain is wired with the either all or nothing. I just got to ride it out.

Cheers for reading X

Sensory Overload

Hey readers,

Today is a wet and miserable Saturday. I took the boys to go and see Santa because it was the best day for us with everything else that's happening in the run-up to Christmas. Also, like to mention husband was here as well so I had that support him.

I thought it would be a good time to take my eldest who is potentially autistic though we are in the process of getting him assessed.

I thought if he has a less busy day he may be able to manage better. However, that did not seem to be the case. He struggled with the experience. I don't know why but husband commented on the fact that his heart was racing and he was asking million and one questions. Overall, he was just generally really anxious and agitated.

Anyway, we decided to go to Sainsbury's which is just across the road from where we have been to see Santa in town. I wish I could stay outside with the boys because I hate going to the supermarket with other people, especially at a really busy supermarket. Of course, it was absolutely pouring it down. Why is it when it pours down and you feel meh it just makes it feel much worse.

I haven't been in a supermarket on a Saturday for a very long time and safe to say I still hate it with a passion, now I understand why I avoid it at all costs.

Not only was I struggles but also both boys were too. I don't think it helped that they were tired after walking about and with all the excitement of seeing Santa.

My eldest who decided to kick off in the supermarket and just say no to everything, however, we did give him a toy to help keep his mind occupied rather than focus on the anxiety. At this point, I was slowly beginning to crack up because I was really struggling with so many different factors I was on the brink of having a meltdown.

I generally forgot how bright the lights in the ceiling really affects my vision. Not to mention the noise was so loud, people were here and there with no order. My boys were arguing and demanding for this and that.

I had anxiety already as I knew my son could potentially kick off at any minute.

I needed to get out and I did I think at the right time. I feel a failure now because I just can't cope. Why did I have children? these type of questions circler my head because I am rubbish and still can't believe my husband allowed me to have children.

Yes, this is in the moment but these feelings are strong and they are hard to leave them behind. I am feeling yet again like an inadequate parent. I know that is the difficult part of having autism as a parent with having to face many a challenge. Somedays I can manage where others all I want to do is break down in a crumble and hideaway. So, I decided to write down my feelings in this blog post to help me accept the situation and not let it eat away internally.

Cheers for reading X

I am a slug!

Hey readers,

I promised to write more positive posts but then I would not be true to myself. I don't want to give the impression my life is all lovely and full of flowers when really it can be pretty crap being autistic and trying to cope.

My brain is dead!

One of the things I seem to struggle is finding my mojo....whereever you are please come back soon, I miss the buzz of the get-up and go!

I feel meh....I know it is only a feeling and that too shall pass. But right now it is hard work to get up and go. I wish I had motivation but having quite an emotional week with downers and feeling well suicidal at one point. 

I kept thinking life would be much better if I wasn't here, I f*ck up too much. Don't worry it was a brief moment when I was right down low and I wanted me to take me.

 I am still here fighting. I am always fighting and you know what it is bloody tiring. I have to battle my thoughts and try to get on with it and during the summer holiday, it is more intense.

I am sure I will feel better soon, emotions are exhausting and you need time to heal. I sure do, I am exhausting, I just want to stop thinking for a bit. I am constantly planning and preparing because if I don't then I stumble, badly. 

Communication, as I have said previously in posts, is something I struggle with, even if it is with people I know. I tend to have a catalogue or format in my head on how to speak. 

Sometimes, I am too exhausted. You could call me anti-social - which would be true. However, space is a big thing for me, I am an introvert by heart and I have come to accept that. I need calm and quiet to move forward.

I suppose writing this out, it has helped clear my thoughts and made me realise that the one thing I need is rest. I need time to heal. It is important to me and it will help greatly.

  I used to be embarrassed by the fact that the social aspect of life makes me so tired and frequently need that rest. 

I think because of a lot of mental energy and that soon saps away especially if I am working harder as I don't have the correct natural skills to do the communicating so many people so automatic and they don't have to even think about.

Sometimes, we have to stop and have a break. It just feels that everywhere there is this notion that you have to be on the go 24-7 but that isn't the case? 

I suppose that is why the slow movement has been come popular and a lot of people like myself are getting tired of this fast pace called life.

I think one of the hardest things for me as an autistic is to accept that some things will always be a struggle and that they do tire me.

 I need to learn to rest and not see myself as a failure because of this. I am sure people don't look at people with a broken leg or whatever and view them as not thriving. 

I just have to work around my limitations and do what can do. At least I can say I have tried.

Cheers for reading X

Hey readers,

Today I feel a bit lonely, though not in the sense where I want to mingle with people. More isolating, knowing that I am different and that sense of not being 'good enough'.

 Often I can ignore or distract myself from focusing on negativity. But today is a struggle. I just feel like I can not function like the rest of society. I feel my inadequacies.... they feel so loud in my head, they might not be real but they feel real to me and today it hurts.

I have always battled with being autisitic...it is tough going, after a tough long week of challenges with a little fight left it can defeat you. 

I think one of my problems so I am not often relaxed in situations such as having to go to the school assembly, this is where I feel most insecure. I don't feel right and I feel like everyone is watching me. 

I know I  am probably being narcissistic and changes are no one is, no one cares, hey even some may feel similar.

At the time it feels scary, and because my anxiety is on that super alert it is hard to come down without the good old meltdown. 

Yes to that question I did have an epic meltdown, it is all I could do. Then I took my laptop and wrote my thoughts. No real answers, it is merely a record of how I am feeling.

I feel not amazing but cathartic, now I am going off for a tea, cause let's face it, tea doesn't cure feeling crap but sure makes the painless hard to bear.

Cheers for reading X