Thursday, 18 June 2015

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!

Saturday, 6 June 2015

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*

Monday, 6 April 2015

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!!! 

Monday, 30 March 2015

Teaching the basics.

Today was a little better and my mini-teen more relaxed. It seemed promising when he woke up and dressed himself without prompting.  Of course he put on three of the new sets of clothes I bought until he was happy with the final result. That one was the "most teenage" one.
As the morning went on we had some stressful episodes.  The usual autism stuff, especially as he is out of routine.
He was calm enough just before dinner so I used this time to start looking at our growing folder again and see how much he remembered.

He knows this one by heart now and can tell me picture by picture how teenagers smell, its not nice. We shower, wear deodrant etc and people are happy. 

This one shows the stages of the bodies changes as we grow up. He could tell me which one he is, and what he'll soon be. He knew there was going to be changes in his body including hair, spots etc

In this one it has a list of body parts and he labels each one. teaching him the proper terminolgy for future needs.  He knew the basics but also thought it improtant to show me his elbows, legs and knees. This is also a good one to show where are private body parts. I have the same picture with his groin area in red.  The female version would have breast and groin.  I havent gotten into privacy yet so thats not needed for now.

We looked at this one briefly to show him that female changes are a little different. The get spots etc too but they develop breasts and dont have a penis even though they have hair there too.  I didnt go into it too much but he just showed me what boys dont have and I left it at that.  Im also going to need him to know whats private for girls and why he never, ever touches a girl there.  I dont need that phone call from school or respite services.

It went very positive and he even came down after dinner for a shower. And told me where he had to keep clean and why.
Cant ask for more than that can I? 

Sunday, 29 March 2015

Bad weekend seems like an understement

Wow. What a weekend. Normally Id be saying thank god that's over and roll on school tomorrow but wouldn't you know its the Easter holidays and he has two weeks off. Two weeks of no school, little routine or structure. I always dread these breaks, unfortunately I'm not one of them mothers who look forward to these school breaks and plan multiple activities to do with him.  I wish I could be that mother.  I'm the mother who is counting the days and hours until the school bus pulls up the Monday hes back.

This weekend was a weekend of screaming. Non stop screaming. His frustration is through the roof and his obsessions are getting so extreme.  Saturday for the entire day he was freaking out because I couldnt turn him into a cadbury chocolate finger puppet.  And I couldnt take him to chocolate finger land! We can thank youtube for that one.  He has no concept of reality and pretend and no matter how much I tried to explain it too him he just got angrier and angrier.

Sunday was worse. After a night of little sleep, he woke up wired. Everything annoyed him.  I got to escape as he had ripped up most of his clothes the day before and I had to restock his wardrobe.  A pointless exercise but he does need to be dressed. From the second I got back it was full on. Because I cant pack up and move him to America he absolutely lost it. I managed to stop him hurting anyone but my brain was fried. I found the most pathetic excuse to go to the supermarket and ended up sitting in the car park for as long as i could manage before going home again. Its been forever since I've done that! I didn't even have the energy to cry I was that tired. Should have stayed longer because the second I was back in the door he was back in my face.  In the end I just stopped answering him but he was on repeat.

If this is hormones I'm holding out little hope for me surviving puberty with him. Maybe its the male version of PMS? Is that a real thing? Then it would only be a few days a month right? Heres hoping.

Thursday, 26 March 2015

Hormones,Autism or Bold?

Since my last blog I've been sticking to the same plan.  I'm mainly concentrating on self care and hygiene right now. He's getting better at washing and showering himself. He know's where to keep clean but needs reminding before a shower.  He has no problem dressing himself.  Because he has the odd spot I've bought a gentle face wash and hes used it once or twice.  I think I'll have to print out a visual schedule as there is so much for him to remember, no matter how slowly I introduce everything.

That's the positive news. His emotions and behaviours are more unpredictable than the weather. It has been draining. One problem is his increase in appetite. I cant keep up and I cant give in. Hes growing taller but he is still getting bigger in an unhealthy way and also getting stronger. That's whats scary.
When denied food he sees red and lashes out.  I cant keep giving him all the food he wants and I refuse to but hes getting so angry and so upset.  We've had everything tested, he has nothing medical causing this extreme hunger but that's little consolation when your defending yourself from your own child.  Your stopping him hurting you, damaging property and most importantly hurting himself.

His anger is at an all time high.  Hes becoming obsessed with things and if he doesn't get his own way he sees red and the meltdowns are the worst we've gone through to date.  The problem is, once its over he gets so upset and remorseful. Hes two different boys. He shocks himself at how angry he gets.  We can increase his medication but not by much. And the medication hes on increases appetite. A vicious cycle. I can try fix one anger to make another just as bad.

As a mother all you want to do is help your son. You want to make everything go away and for him to be happy. Its heartbreaking when hes hurting you or hurting himself.  your stopping him hurting his siblings or others.  You get calls from school about the awful behaviour, Phone calls from his respite about bad days and hurting staff.  All I want to do is fix it.  dealing with your emotions and heartbreak of it and as well as all that your frustration.

The thing is, I have no idea if some of these behaviours are just my son being bold, if its hormones from puberty or if its his autism.  Is it a mix of all three? Im so tired and how can I fix it if I dont even know whats causing it. if this is puberty how on earth are we going to survive the next few years.  We could have all of this as well as sexual feelings confusing him even more.
I've read the books, attended the courses, researched the Internet but no one has an answer about this.  Yes I know all about "growing up", physical changes, things that will happen to his body, talking to girls, dating girls and so on but theres nothing to prepare you for this.

Monday, 9 March 2015

Off to a flying start....mostly

I did it, I bit the bullet and started talking to my growing preteen.  I started with chatting to him about the fact hes nearly a teenager, this means he's going to start getting smelly and when we get smelly we have to wash more and we have to start wearing deodorant.  He was more relaxed about the deodorant than the showering and hes happy to put it on every morning.  This might be to stop him getting smelly and prevent having more showers.  We have a social story up about teenagers getting smelly. Friends don't like that so we have to change our clothes every day, wear fresh socks and underwear and put on deodorant. Then we smell nice and people are happy.  He reminded me yesterday morning about clean underwear!!!

He's also started getting dressed himself in the morning in his room.  This is big because I always had to dress him downstairs.  I do have to leave the clothes out and he needs a bit of reminding and a promise of toast once hes dressed.

I touched on the topic of his body which is a slow process but hes listening.  He seems ok with the idea of body hair. He found it hilarious when the social story I copied from a book I bought reassured him it wont all grow over night and he wont wake up a hairy monkey boy.  I guess that wasn't a concern for him. He knows he might get spots and hasn't noticed the first one that's popped up.  I really don't think he pays attention to himself.  I don't think he understood when I showed him his voice will start to change and might sound squeaky before he sounds he sounds deep like a man. Maybe when it starts happening, we can talk about it more.  Hes already found a pubic hair but I've shown him a generic picture that he'll have more and his penis will get larger. But I didn't mention when it gets harder.  We're not at that stage just yet, thank god!!

The last thing we talked about was girls bodies.  They change too. They get breasts, but boys don't.  They get hair but not on their chest like a man might.  I had to remind him we don't touch girls or try and look. Its very private, and we don't show friends or teachers any new hair.  I don't need that phone call from school.

The only issue so far with talking about him growing up is he now wants a job in a cinema.  He cant fathom why hes getting bigger but at ten isn't big enough to have a job.  Its caused quite a bit of anger and resulted in hours of watching you tube videos of projector rooms.

Hes also googled germs after talking about getting dirty or smelly and was begging me to buy Domestos (bleach).  I couldn't figure out why for ages until last night when he came into the bathroom to shower, he shouted for the Domestos to wash.  He is way to clever on the internet but then puts 2 and 2 together getting 5.  Thank god all my cleaning products have always been hidden well away!

I'm so glad I started this early. I cant imagine having to cram it all in, teaching him in a rush to beat his body.

Thursday, 5 March 2015

Waking up to reality

Its real, its happening, its time to wake up.
My son seems very excited about getting bigger and now that I know its going to start happening, I can already see signs.
He has the signs of one or two spots.  Iv found a hair. Yes its me that has to look.  And hes showing an interest in girls.  Girlfriends have been mentioned but to be honest I think hes just asking about girls who are friends, rather than a relationship.  Hes never wanted friends in his life, but now he thinks hes a teenager (his words) he wants them more than anything.  I've asked him why he wants a friend and he isnt sure himself, but he likes the idea of one.

During a trip to the swimming pool he approached a girl and tried rubbing her shiny swim suit.  Now I venture into the mens to change him praying no one notices.  Thank god for them cubicles.
He asks me every day is he bigger, is he growing up.  Of course the answer has to be yes.

I've attended two courses, a three week one run by his service provider on puberty and one run by the Middletown Centre for Autism.  Im so glad I bit the bullet. I feel so much better about whats happening and im confident I can help him.  Between the two courses I've realised theres alot more to growing up and maturing to puberty.  There's relationships, self care and hygiene, job prospects and alot more social issues than hes ever experienced. I dont know if he'll ever be at the stage of applying for a job but if he gets that far I feel more prepared. I even have a flow chart if he ever wants to ask a girl out.

The good news is the scary parts of puberty will wait. I dont introduce this topic until the last minute. There's no point, until I know hes there. Right now, I have to introduce the topic of his body changing a little, hygiene and self care. So the biggest battle there is teaching him he will have to shower more often.  That will be fun!  I also need to make sure he actually knows his body and what everything is.  I have to drop the baby terms and use words like penis. The proper names, just in case he ever needs to talk to a doctor or professional.  And I'll be slowly talking about the areas of his body that are private.  Now that im making him aware of these areas, hes going to be more fascinated by them.  I want to make sure he knows from the beginning that no one else sees them. Its ok for him to touch etc but only in his room.  Its harder to break a habit here so im making that one  priority.

I have my puberty folder ready with some visuals and social stories for him, some books ready to study and some vodka, just in case.  I might as well start drinking at some stage.  This seems like a good time.

Cant I just bury my head in the sand??

Iv been living with autism in my life for as long as I can remember. Pretty much my entire parenting life. I came to terms with my beautiful toddler being diagnosed with this really quickly. Quicker than I should have now that I think about it. And I've been the warrior mom from the beginning. If there was an obstacle put in his way, I made damn sure we moved it! Whatever assessment or service he needed, waiting wasn't in my vocabulary. I found the expert parents who knew their stuff as quickly as I could and they told me more than any professional would!
Getting early intervention, school placement, speech and language, occupational therapy, it came way too easy. Although the slt and ot didnt last as long as he needed.  I am blessed he has an amazing team of therapists around him though and Im one of the lucky parents who actually gets to see them and talk to them for help. Even his social worker is a gem. Not many autism parents are this lucky.  I've done all the courses, read all the books, and for the 8 years or so since diagnosis we've managed.  The main problems are behaviour, and aggression due to different things. He has speech, Thank god!!!  But expressing himself when hes upset, over stimulated or frustrated is impossible and he lashes out. Sometimes badly.  He has an addiction to food which is probably the number 1 cause of anger.  I have to say enough at some time and NO isnt a word my son understands.

This also means hes over weight. At ten, hes 5ft something and 10 stone 5lb. We've met too many specialists to check for genetic problems, diabetes, everything, iv lost track and it was during these tests they confirmed his testosterone levels are high. Which means, yes, puberty is on our doorstep.
 Hello body hair. Hello body odour. Spots, shaving, hormones,wet dreams and oh my god masturbation.  No one tells you about this part when they tell you your little boy has autism.  This is a whole new chapter that I dont want to write.  But like it or not, whether his mind is ready, his body is, and Im going to have to help him through it.

Where do I start? How do I start? When do I start? HELP!!!!!