Autistic as a Reclaimed Word

A thoughtful read and holds true. Thank you Musings of an Aspie.

Musings of an Aspie

Most adults on the spectrum prefer to be called autistic, rather than a person with autism or a person who has autism. The general consensus is that autism is not a separable entity. To be “with” something or to “have” something implies that we might somehow be able to rid ourselves of that thing and still be the same person, much like someone who has been cured of a physical illness.

I have always been autistic and always will be. If I was not autistic, I would be a completely different person. My autistic neurology affects how I experience the world and how the world experiences me. I am autistic. This feels very simple and logical to me.

It is not, however, always as simple for others. I’ve noticed that a lot of people in the autism community (which is different from the Autistic community) find the use…

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Help wanted L.I.L.Y

Today I have a quick post. Some things in life just are, if any of you out there can knit a few squares and post them to this group we will be truly grateful.
Each square you can send becomes some thing so important to these children and their families. When it is cold here it is freezing! Living in a tent with no personal belongings and having to cope with the cold and the shock of not only what you have seen and heard but living in a camp is no fun.
Each square you can send adds hugs to each child that gets a blanket.
Please find time to help.
https://www.facebook.com/LilyLoveInTheLanguageOfYarn?hc_location=stream
I am knitting squares and these ladies are some thing else! together we can make a difference.
We meet weekly and knit and sew blankets, BUT the more that help means less cold children this winter!
People help from around the world and you can help too.
https://www.facebook.com/LilyLoveInTheLanguageOfYarn?hc_location=stream
Enough said, time to help. Check out the page and then send what you can. If nothing else please share with blogs and tell family and friends.
Thank you

Talking can help

I was lucky enough to have a really good talk with my daughter this weekend. I shared with her what is getting me so upset.
As she is five years older than my son, she has a good handle on how he has grown up and how life has been for us all.
She reminded me of how we were building a soft playroom come safe-room, as his temper was just so bad in those days, how we had no knifes or even forks in the house as he would stab out at us. How a spoon could hurt! I had forgotten, not completely, but enough to start my guilt trip of ‘Have I done the right thing moving?’ ‘Have I taken away his opportunities?’ She reminded me life is not perfect but we are all better and happier people for the move and the slower pace of life! That is why this blog got called ‘Life in the slow lane’ because that has been the best thing we did.
Nothing like a well aimed kick up the ass by someone who knows what things were like, and where things could have gone! Who said our kids can’t teach us anything!
So ever onwards and maybe just a little more on the ‘Chill, he will get there when he is ready!’

How much should you help?

I guess I want in part here to apologise before I start my blog today.
You see the thought that is going through my head is the invisible line that comes as my son has got older. Where do you draw this line of independence? I will be the fist to raise my hand as being a bit over helpful as a mum. My daughter who is older, I still help out, but if she makes a mistake or messes up a job (she freelance writes) I leave her to it now days. Often she has little money after the rent, and I let her get on with it. I do over cook meals, so I freeze the leftover meals, and she can have these, so she is not staving BUT that is it. If she doesn’t get her work done, so what, she has to find out herself; you need to work to pay the rent. I used to help to much she had every thing, and I had nothing. Now with my son where and how should I help? This thought keeps jumping into my brain these days, and I think that this is to remind me I should not ‘carry him!’ but how to encourage him is just a bit harder to sort out. You see he is happy; he has his computer, food and me to talk to. Mum nags about other bits, so he just forgets them. He has a collage on-line course to do, but with being ill that has taken a dive. He is not looking towards his own future in any shape or form. He is happy in the now. I want him to be able to cope well without me not just sink! However, how I can get this is just out of my grasp. He will not shop on his own and even will not with anyone but me. He can cook and clean the house but as for any form of income, we hit total refusal. He hates going out and near crowds he freaks out, on the inside, and it takes him hours to settle down. I worry about his future, his life as an adult. I do not want him lonely and sad but enjoying life in the full, dare I say it even having friends!
OK rant over, my worry shared.

Chat sites that are for Asperger’s

I was looking at ways for my son to start to make friends or share with others his interests. I have found these chat sites, which I hope he may try, and thought I would share them with you.

http://www.aspergersteenchat.com/
This seems a good site for teens to chill out and make friends. The rules are good and clear as well as offering good advice to teens using the chat site.

http://www.wrongplanet.net/forums.html
This is a big site with blogs, chat rooms and forums. There are books and a shop. As it is big, it may take longer to get used to using but a great place with many things to do.
If you have any other ideas or know of good chat site, please share with me, and we can build a host of options for others to use and find easily.

Then I thought should I be doing this? I seem to put in a ton of hours trying to help, but does my son even want help? Now that is a good question!

Odd seems to be the normal for now.

My poor son has just got a cold on top of a cold! and he has just started to get over this one, and then had a really bad cold or flu! the problem is he hates tablets and will not have cough medicine, throat sweets, or steam! so we get one ill person, who I wish just for once (for his health) would take anything to help. So we have been bouncing around colds for over a month now. He gets a bit better and down he goes again.
I now have him on really fresh homemade soups (that gets the vegetables into him!) balanced of other things and just trying to build up his poor body’s resistance to the colds! Yes, I am getting him to dress warmly, but getting some fresh air. He now will allow a vapour rub so that is good.
So if any of you out there have any useful tips or ideas of what I can do to help, please let me know!

How to help someone else have self-motivation ?

I would love to hear from others on how to self motivate. Where do you start? You see the thing I am thinking is that my son lacks this really important area of self-development. If I nag or talk him into it, things get done, but the minute I stop he goes back to the same old same old!
He is 19 now, and I am not getting any younger! I worry about what the future holds for him. He just can’t stay the same for ever. I am his only support, and this is the disadvantage of living in a country where there is no help at all for him. To even find a therapist we are talking about a drive of an hour each way, which I would do but something he will not do.
I know that I could be over worrying but as a Mum, I do. I just can’t get him to see that some things have to change. I always believed that for true change to happen, it has to be by their own thought process, not just a supported change but one that holds value and enables you to go forward has to be from within. I do think we have to support that change to happen, even with a lot of help, but for real change it should be taken on and continued by them.
What do you think? Drop a comment and let me know.
I do get so worried about this!

Temper tantrums or meltdowns?

The news has been full of sad stories around autism and how we should feel sorry for that poor parent or carrier. I just want to try to add my thoughts on this, you may not agree but here is something you may need to know.
Meltdowns are not temper tantrums!
Many people included parents of children with ASD do not understand the difference.

A temper tantrum is mostly when a child hears the word ‘No’ or when they do not get their own way.
The child often checks to see that you are watching.
They want attention; be it negative or positive.
They will try to get what they want from the explosion.
They do not (as a rule) hurt themselves.
The upset can end as quickly as it starts.
They are always around a goal/ self-agenda. An example here can be the temper over not having that bag of sweets. If that bag of sweets is given to the child then the temper/ tears and screaming stops quickly. My daughter could scream really well, and it was a battle of wills. She would look to check if the temper tantrum had worked, and if not, she would throw herself to the floor. I can still shudder at the thought!

Meltdowns are different, and this is really important to understand.

The child with ASD does not look for or care if you are watching. They can and do hurt themselves and others. The end of a meltdown comes when it has blown out, usually the child has hit exhaustion, there is no easy stop switch. Sweets just don’t cut it! They can happen due to sensory overload that you may not see. Our child in a meltdown has lost understanding and awareness. This is ten times harder than a normal temper tantrum, please bear in mind just how scary this is for the child, and I add here, for you. I hope you can begin to understand the total terror for the child.
Hold that thought, and try to follow me as I place in an analogy here.

Tetris the game sends blocks of colour down the screen for you to ‘build a wall of colour’ now they can come quicker and quicker and leaving gaps between them until the screen is full….. game over. If you can think of this as we all have screens that have to deal with incoming information, we each have our own size screen, and each has the blocks falling at different rates. Some people will fill their screen fast, others slowly, but the end or in our case is a meltdown if too much has filled the screen. If, as the child, your understanding, tactile, spatial awareness, sensory overload and just keeping up with the daily overload of understanding what is going on can fill their screen fast! It may be that the school day has been more than enough of ‘holding it all together’ the blocks just keep on falling faster and quicker and often as the parent, we only see the last ‘block’,’ but it is in the whole; we need to see those blocks from last week still may be having an effect on what can be copied with today for the child.
Now I am not saying give the child everything they want, when they want, but start to see past the meltdown, to think what happened last week that could have added to this meltdown? We as parents do have the ability to stay in control.
1. Think about their sensory visual needs
2. Think about their sensory hearing needs.
3. Think about their lack of emotional control or their being over whelmed with emotions. Most ASD children have a huge amount of empathy far from the believed perception. Often this leads to taking on everyone else’s ‘feelings’ and having no where to place this.

How we can help:

You can’t avoid all meltdowns so start by accepting this fact. Do not take it personally.
You can begin by seeing if there is a pattern, what happened days before and on the day? This is time-consuming but, the payback can really be worth any work you may do.
Have a safe place for any meltdowns where there are minimal things around that can hurt the child or you. A soft play area in their bedroom can work well. Try to allow the child to help decide where this place is, and what can help them after all they do know what is best for them, or at least what can help. I am not talking about a ‘punishment area’ but a space to gain a rest from all that input.
While in a meltdown talking doesn’t work well, so stay calm and quiet. By all means turn your back if the child is hitting out.
Do not join in. While this can seem obvious such extreme emotion can become a chain reaction.
Intervention can help early on with sensory support, visual support and helping the child manage emotional overload. All this takes time, but great things can be achieved with small steps in the right direction. My son found that if things where just at exploding point he couldn’t say but he could hold a red card, that means I need space and peace now! A weighted blanket could really work. A calming room with the right lighting can work for your child. A walk can help.
Tell someone else who may be able to help. Set yourself up a small group of people you can share with, other parents going through the same thing can help. Just having someone at the end of the phone can be enough. Setting up a sitting circle can allow you to get a break as well as breaks for others in the circle, not for money but for equal timed breaks. Ask for help from professionals. Seek help before you feel you can’t cope. Proactive is always better than reactive.
As both you and your child learn to understand when these meltdowns are coming you both with time, can reduces the impact they have. My son is now 19 and yes he can still have meltdowns but now he is not violent, something I thought would never happen BUT we have worked on the triggers and as he has grown older and gained in his understanding of what the hell is happening, the violence’s to self and others has gone, most the time.
In the black moments when my son was little and very violent I would wonder if it would ever end, I was covered in bites/ bruises and just so tired of it all. You need to be active at being proactive and not just constantly dealing with the meltdowns but starting to see why and what can be done before the meltdowns. It took a long time to understand meltdowns are not temper tantrums. I hope this helps someone to understand the BİG difference and start being proactive not reactive.

I hope this helps someone out there and if that happens I will be happy. There are lots of information out there and this is just my thoughts.