Saturday, 7 May 2016

A bitter mother

I don't know about anyone else but I am delighted April is over. I am so fed up of awareness month and everything that came with it. I find it very difficult to spread awareness about my sons autism when really it frightens them. How can I expect acceptance when I barely accept it?
The entire month of April I seen so many stories of positivity and success, and don't get me wrong that's great, but I don't think I seen one story of the hard side of autism. I felt like the tough end of it was being shoved under the carpet. I know, I sound bitter and I can feel myself becoming that way but the entire month of April was stories of how we should celebrate his autism, embrace it even but I know I will never be able to feel that way. I hate it, I hate what its doing to him, to me, to his future.
How can a parent celebrate smearing, trying to help a non-verbal child when they cant tell them they're in pain, self harm, and every other daily struggle that makes their child's life so much more difficult. Where's that story? 

During April I attended a conference by AsIam and I have to say I enjoyed every minute of it. It was run so well and it had talks running all day on different topics as well as speakers who were absolutely fantastic.  But as I went through the day I felt nothing that was being talked about related in anyway to our daily version of autism. I sat close to tears when they're youth group gave speeches and all I could feel was envy. A group for young adults on the spectrum, they spoke so well of their struggles when it came to autism, it was really inspirational but even as a group specifically for autism, my son would never manage to join. I cried wishing that was the autism my son had. I was so proud for that girl, and I don't even know her but I was also envious. I was ashamed of how I felt.

You meet so many people and hear so many stories of high functioning autism or aspergers and it makes me wonder how its the same diagnosis as my son. Surely the spectrum is too broad? How can you even compare?  I even questioned it with his psychiatrist. I thought he couldn't possibly have autism, I wish that's what he had. He has to be bi-polar or worse. But its autism he has.

He was 11 in December. And since Christmas we have already had meetings where residential living has come up. Sleep has always been an issue but he has now taken to not going asleep at all. Getting aggressive about 3am until he falls asleep about 6am from exhaustion. When I leave the room I have to take my four year old me. He gets so stressed and anxious about something he cant even understand he tries to harm himself. And when I stop him, I get hurt, or his dad does.
I keep on telling myself its hormones, its puberty and I'm hoping a lot of it is but he's 11! We're only at the beginning. Its terrifying.

Monday, 25 April 2016

Hormones-The good, the bad and the ugly

My very big pre-teen is now 11 and hormones have most definitely kicked in! Unfortunately a combination of medication and an addiction to food means his weight has become a huge issue mainly health wise, which in turn means his size and strength are an issue.

Even at 11 I've noticed an interest in girls has kicked off but hes struggling to learn or to want to learn appropriate social interaction. At a recent swimming lesson he took great interest in a teenage get together. It was great because he was delighted to show off his swimming skills, but awkward when he wanted to join in with them. And we turned a few heads as he cheered in their races very loudly. But hey, any social interest is a good thing right?
Unfortunately it was after the lesson when he invited about ten girls into the changing room to "lets go get dressed" that you realise the real problem. He doesn't look like a little eleven year old. He looks about 15, it is obvious theres something different but to a stranger it must be a little uncomfortable.  So I braved the mens changing room and from now on that's where I'll be.

He's also started to get his first few teenage spots. At first he was quite happy but has started to pick them. I need to get started on a social story and picture schedule for cleansing his face but his mood swings has left me with little time or motivation.  On that note, I also need to get one made for his hands out of trousers.

The bad side of his hormones which has hit with an almighty bang is his unbelievable mood swings. He can get so angry or so emotional with no prior warning and its causing massive problems. In school, at home, in respite.  His poor care worker was out with concussion after an unsuccessful trip out and she never came back. Respite has had to recruit more adults for his nights and school is a nightmare.  Its draining at home, waiting for the phone to ring with another incident report or waiting for him to kick off here. Everyone is telling me this will settle down and that's the only thing keeping me going. We've switched medication to a stronger one but I'm still not sure its helped. I had a scratched up face for answering a question he asked.
He was never a social child but he's retreating into himself more and everyone is on edge as to when he will kick off. Its very hard on younger siblings as they can barely talk and he screams at them. So we've put a lot of hope on a giant weighted blanket.

I was worried the sexual part of puberty was going to be a nightmare, I never took into account his mood swings.

Thursday, 3 March 2016

Signs of a teenager

We suddenly have more signs of puberty other than behaviour. Body changes are very slowly becoming more obvious and he seems to be aware as well as us. There is a lot more hair in places even though he's still not happy that facial hair hasn't shown up.

My preteen 11 year old by has gotten his first spots. I'm lucky he wants to grow up though, normally something like this would bother him. And he has managed to leave them alone. He was worried they would be sore but so far so good.
I haven't managed to introduce a skin care routine yet as his skin is very sensitive in cold weather and I'm afraid to mess with it yet. We just have his usual Aqueas cream moisturiser and we are applying that with no problems thankfully.

I guess I'm going to have to find good products for young skin and do up a schedule. He's still very forgetful with deodorant so I've a feeling this is going to take a lot of supervision and prompting.

I found him looking at the growing up book I bought him so I've a feeling things are starting to feel different too him. Its a very basic, picture style book which is very to the point, although some of the pictures shocked me at first. But it exactly what he needs as he cant read the usual factual style books and isn't fond of me reading to him.

So far this puberty thing is manageable but we haven't really gotten to the embarrassing stuff yet. The worst has been reminding him to take his hands out of his pants and I think all boys do that anyway.

Wednesday, 20 January 2016

Coping with aggression?

I think the majority of parents of a child with autism can admit they've gone through stages of anger and aggression with their child. Maybe its a short phase, maybe its regular. It can be from something as obvious as frustration, or something you wouldn't think of like pain. I remember my son getting so angry when he had pain. He didn't know that's what it was so if we entered a bad phase the first thing we checked was his teeth.
But what happens when the anger and aggression is daily. It can last hours and your child is now a young man. My pre-teen is 5ft 6 and 12 stone. Hes 11!! He can get so angry over something so small and yet it can last hours. Its heartbreaking. I have a nearly adult sized pre teen and hes not afraid to hurt. What are you supposed to do? All you can do is wait it out and protect yourself, give him space until he calms down and protect him from himself. Easy right? I wish.
I had this blog all figured out before I sat down to right it, ive been thinking about how I was going to write it for days and now I'm here I cant put down what I want to say.
When your own child is coming at you and wants to hurt you for up to two hours at a time what are you supposed to do? Hes not just a child though, hes nearly a fully grown man so he has the potential to hurt me. In reality if I let him he would. In the moment when I'm standing blocking his punches, blocking his kicks and making sure he doesn't get the better of me when he tries to choke it feels like an abusive relationship. And he enjoys trying to make me cry, seeing my reaction adds fuel to the fire so I have to keep my blank mask on my face. Reminding myself, its ok, he'll calm down, he doesn't mean it, hes your baby boy, its just your hormones.

So what happens when that mantra doesn't feel like its working anymore? When you genuinely contemplate running. You know you cant and in reality you wont but it just feels too much. Its too hard to see him that upset and your too drained.
I had the worst weekend I can remember recently. I vomited from sobbing so much because he decided he wanted a packet of nappies. The tv ad showed a child of about 8 drifting off into a wonderful dream and floating to candyland. Of course he wanted this too and as the packet said from 8-15years there was no reasoning with him. No matter how much distraction, ignoring, or just saying no, he became angrier and angrier. All of the relaxation techniques did absolutely nothing. I just had to let it run its course. By the end of it he was in tears, I was in tears and my mother was in tears. My hearts breaking because I cant explain to him why its not possible.  I went to sleep that night in tears because I couldn't stand the thought of having to wake up again to do it again. I was petrified of the facing the following day and terrified for his future.

How do I know if this is autism, if its puberty, hormones, behaviour?? I'm clinging onto that hope its puberty, hormones will level out and that light at the end of the tunnel is coming for young man.  I'm praying the psychiatrist will figure out a medication that will help him mellow.
As it turns out for reasons of sanity I bought the nappies and after a few hours he decided the feeling of your circulation being cut off wasn't so comfy and it wasn't how the ad looked. He ripped up the entire packet and they haven't been mentioned since.  He now wants me to ring the postcode lottery for them to deliver a big cheque. The problem with that is we don't live in England and I cant just ring them up.

I don't know if what I'm doing is coping, I kind of have too but whatever it is I'm doing, I'll keep doing for my son.