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.

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.

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.

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.

Boys get PMS too right?

So I think I may have jinxed myself after the last blog. He went from the dream pre-teen to be the nightmare pre-teen almost immediately.  I knew it'd happen.  It always does. I dont know what happened but it was an awful few days. Little sleep, alot of aggression, alot of emotion and a hell of alot of shouting.

It got me thinking, If he was a girl Id think he was getting his period.  Maybe if I just had chocolate on a drip he'd calm down.  It only lasted a few days and hes back to being my regular boy. Mainly happy in his own world with his short bouts of emotion. His hormones are rolling around in there. More hair has grown.  Thank god hes very proud of that.  Im finding myself reminding him alot more than usual to take his hands out of pants, or hes adjusting himself more. Of course I've checked hes not sore. Physically theres no "change" but his hands are spending alot of time down there.  I think its time to get the social story ready, but where do you even start. Hes not "playing" with anything yet, I think it might feel weird if hes getting any sensations or hes changing.

These few days of torment though, everyone has commented on how he regresses for a week or so and then hes back to himself. Just like PMS right? Boys have hormones just like girls. I wonder do they get something that sets the moods off? It would certainly makes sense.
According to google its IMS! Irritable Male Syndrome.  Its certainly true. My ten year old has IMS. Oh Crap!

Mammy knows best

I haven't blogged in a while because I made a very stupid decision to change wifi provider. Learned that was a bad idea after 10 mins and took over three weeks to get fixed. ALOT happened in May and I had it all in my head ready to blog about and then got writers block, or is it bloggers block?

Anyway, I'm not sure if I've mentioned it before but my son is on medication. It seems like a lot to me and hes been on it along time. Of course hes a big boy for his age in height and weight and hes on it so long it looses effectiveness and you need to increase the dose. but to me it didnt feel like it was doing anything. I might as well be giving him fruit juice.  The only thing I could see was the side effects, and not even the good ones like drowsiness for a better night sleep. No, more weight gain and increased appetite.  So many of his aggressive behaviour is down to food, I give him medication to calm the aggression and the medication makes him hungry.  See the problem? And the more he eats, the bigger hes getting and the stronger and aggressive he becomes.

After one to many calls from his school (thats a whole other blog) I thought enough was enough. I know its not all hormones, the medication is making things worse. So I arranged another appointment with his psychiatrist and told her I wanted to wean him off it. Boy did she think I was crazy. As did his respite. I didnt tell the school because I dont think they'd allow him in.  I explained I was tired of giving him all of this medicine when I dont know why im giving it anymore. Im not against medication, its gotten him this far, and it did work at one time. Im not increasing it anymore because you can only go so far.  Theres no other group of medication we can try from because they are too addictive and short lasting for a child his age so im done. I want to wean him off them slowly, extremely slowly to give his body a break. I'll do one medication at a time so if there is a difference I'll know which one its from. And then in the future if we need to think about medication again I can start him again on a lower dose and it might work that time. She genuinely thought id lost it this time but I didnt care. I was fed up with it.

So we agreed to reduce the milder of the two 1st. He is on abilify (aripiprazole) in the morning and respiradol in the afternoon and evening. The abilify is the milder of the two. Think of it like the respiradol is pure vodka but the abilify is a vodka and mixer. You need more abilify to have the same effect.  Anyway, we reduced the abilify 1st. 0.5ml a week but if I thought i should stall it at anytime Id stop for a week or so.
Thats where im at now. Hes down to his last 0.5ml and then I'll decide whether to start on respiradol.

Well ladies and gentlemen it was the best decision I have made this year!! He is a different child. His behaviour has been overall a dream.  Not the demon man child everyone was expecting.  Hes happy, hes laughing, his aggression has been cut in half. Hes cooperating in school better, in respite better and over all at home its fantastic. Now his hunger and size problems are the same but I havent got any bruises or scratches often from telling him its not pizza for dinner or he cant have that slice of bread.  Dont get me wrong, its not perfect. He still has bad days, hes still gets angry and he still has bad days. School still ring and I've had the days where you dont know if your too mentally drained to cry but them days have reduced by at least 80%.  And get this, he wants to exercise. He actually wants to move.  He voluntarily goes out on the trampoline and jumps for 10 mins, and hes learning to cycle a bike in school.

Im not even half way there.  I still have the respiradol to start but this I was right! I knew it. Mammy does know best sometimes. I followed my instincts and my child is so far better off for it.

*que happy dance*

Back to Basics. Again.

Easter break hasnt been good.  The issues we've had before have intensified and become more stressful, probably due to lack of routine. Hormones aren't helping because its harder for him to control all of his emotions at once, he is very tearful and everything all together is making him so frustrated and therefore angry and aggressive.  After a few meetings and me wanting to hold off introducing more medication I agreed to go back to visual schedules for everything as well as new reward charts. 

I don't know why 'm always surprised when it comes back to this, I've been using them for years and theres still a load in every room in the house that I dont even notice. Visitors to this house get reminded on how many sheets of toilet paper to use before wiping, flushing and to wash their hands. 

So Im back to using pecs for every activity throughout our day. Thank god I kept them all. But of course my laminator has disappeared. No one tells you you'll still be using these schedules as they get older. It kind of makes me sad to think he may still rely on this when hes 16 or 17. When he should be out with friends, instead hes checking what happens after lunch, looking for reassurance in a picture schedule.

Because he is becoming so angry and unpredictable we also have the famous reward charts back in place. Three tokens in a day for following his rules and he gets a great reward! It doesnt matter if hes done other stuff, if hes followed these rules he gets that special reinforcer.  The problem? He doesnt care! There are no more reinforcers.  I can gently remind him, oh but you only have one more token and you get X, your being so good, remember X and he doesnt care in the slightest. Even if its the reinforcer he chose himself. How do you work with that? 

I am so mentally and physically drained from this. I have a ten year old boy, with the hormones and body of a fourteen year old and the emotional stability of a five year old. He is getting so angry and so upset and I have no way of helping him. He is so confused and stressed and all I can do is wait until he's calm enough to hug him while he cries, if he even lets me hug him.  Hard to celebrate autism awareness month when in my house Autism SUCKS!!!