Posted in autism

Why this way isn’t working.

Where to begin!

Tonight apologies to not only my neighbours but my entire street…..

The screaming ‘bed’ was me. Everything else was Z.

After his not going to sleep until 11.40 last night and wanting to sleep at 4 4.30 by 8 he was over tired. We put on Timmy time which is what’s been working. Dad has been watching what ever rubbish he watches in the spare room keeping an eye on Z whilst I get School bag pack lunch etc sorted downstairs. ( ok may get a sneaky 30 minutes on the switch In too!) 8.30 can hear banging and dad saying ok I’ll turn it off, he put something else on. 9 o’clock a huge bang which I ran upstairs after hearing dad shout you stupid boy you could have killed yourself.

He’d only pulled the shelves off the wall. These are floating shelves so slide into the screws, he’s pulled it all taking the plaster off the wall with it. Thankfully there wasn’t a lot on the shelves as we’ve never really trusted him not to climb for stuff. So a few soft toys and a money box or two. You couldn’t walk into his room as to climb onto the unit he upped the boxes out and emptied them. Meaning I had to put stuff away first. He was throwing himself about in bed, but he was going to bring the curtains down too, so I was telling him lay down which he was but leaping about like a salmon, hitting his head on the bed, kicking the walls, attempting climb down the end of the bed. In the end I had to pin him down, tickle his arms enough to calm down and not injure himself. Yes he winds me up and I have so much else to be doing but I can’t let him injure himself. A small cut to his bead or eye would bleed imagine attempting to take him to a&e in the state he gets himself into. I have to wrap him up and protect him with pillows either side.i know within 10- 20 minutes he’s asleep .Of course now me being like a baby elephant is hard to try and sneak off a 5ft bed! There’s nothing Nina like it!

This was all from a very over tired child. Going to bed at 10.30 most nights is not only having a knock on effect on him but on us too. I like to be asleep by 10! My husband wants to finish watching walking dead, 10.30 is far to late to even attempt a tv series never mind the list of films we’d like to watch. But there’s no way I’m putting on a film at 10.30!

The only thing I can think of is to try taking him out somewhere every day after school until 6 or so, then home and bath and then in bed by 8 -8.30 half hour of Timmy time and bed. I was told it takes 31 days for a new routine to start, we’re on day 4 of his bed bing turned and getting him to fall asleep there. With the holidays arriving the going to bed at 9.30 doesn’t bother me as much as I know for school we’re waking him at 7 and he’s grumpy maybe he’ll stay there till 7.30 or 8? I have 4 weeks until the end of term so maybe I’ll just carry on for 4 weeks, then let him carry on for the first 3 weeks and then start the new routine ready for school starting back.

I know something has to work, because right now the only other thing is to try melatonin even though I’d said I was against it, the lack of sleep is now having a knock on effect on us all. In a mood he’s trashing the house, with me so tired I’m finding myself napping through out the day meaning the trashed house is staying trashed for longer. The lack of sleep means my husband is shattered getting home from work and doesn’t want to be fixing the mess that Z had created.

Something has to give and if that’s drugging up Z well then that maybe my only option.

Posted in Uncategorized

The home stretch.

This time last year I was in complete panic, who would Z have next year, what would happen to him who would his new teacher be? A lot of last years post is still relatable this year.

This year in terms of achievements other than toilet training and his sense of understanding goes where he’s at with his targets etc I won’t really know until parents evening.

What happens In September? This year he’s in a class with pre schoolers and nursery children , so ages 3-5 he’s one of the oldest and would be in reception class in mainstream going into what year 1. It’s hard to believe he will be 6 in October. To think 3 years ago I was worried about him starting school.

Knowing a little more of the way the school works this year, do I want him to move forward and struggle or stay where he is with the extra help and grow in independence.

Looking back at last year and I didn’t want him to loose his teacher, I was nervous of the unknown he had a brand new teacher that nobody knew, first meeting was awkward so to speak as we were all like ummmm. This year I’d love him to keep his teacher, she seems to know what she’s doing and Z is always happy to go into school, when she brings him out he’s happy and he’s smiling and that’s all I can ask for as his parent. When we were going through the toilet training stage and he wet himself during circle time twice, I said do it again and let him sit in it it won’t kill him. Ok, she laughed at me but I think she would have gone through with what I said. Will he keep his teacher I’m assuming no.

The way it is now where would he go? They work on a pyramid scheme type of thing. I’m not 100 percent certain what it all means. I know both the classes work with both pecs and aba I’m not sure if two classes use both methods or if one focuses on aba and the other pecs. With school the classes are not all on ages but rather abilities with similar ages. Ideally now I’d like him to skip the next class and go to one next to that where those children seem to speak that little bit more, would he be able to join those children as they are his age group I’m not too sure as of course those kids will move on too.

Would a pecs class be beneficial to him when I know he can say words if pushed? Or would speech therapy actually be the way forward for that one? Then again he’ll say words but not the ability to answer questions, would the pecs class help him to speak and help him to communicate his needs? Would making him request what he wanted instead of just giving in for an easier life help? This I can work on in the house school wouldn’t have the time to refuse him until he spoke and I can’t really blame the school for that one.

As for aba I’m not really sure what it does. I’m guessing they can’t do aba work all day. To be honest I don’t know if I’d want that either. I think he needs to learn at this age that he will have to do things in life without getting a reward every time. There’s parts of the aba I don’t really agree with, and some parts I personally believe are rewarding bad behaviour. Would using aba so rewarding him for talking help? If he gets put into that class then I’ll have to see how it goes. But then do I go against what I’ve said when I make him say open before giving him his crisps? Isn’t according to aba handing him the crisps his reward?

I think if he could tell me how his day has gone then that would make life so much easier, less worrying.

I know we have around twenty five days of school left not including the weekends. I know now we won’t know who the teacher will be until the end, it’s not like mainstream where they just move on to the next class to that teacher he could stay and the teacher could move or he could move to the next class but that teacher would have moved too. I’m a little more relaxed this year, I know he’ll be ok, he’s come on so well this year and I was worried last year that he wouldn’t. Of course I’d like him to move with the children he’s with now but again that’s not going to happen as some of those are three and after the holidays he’s going on six. Last year the whole teacher thing was new to me, the not knowing I hated, this time I still hate not knowing but I’m more relaxed about it.

In one way I’m glad I haven’t got to decide on where he goes. It’s hard enough worrying how he’ll settle, will the teacher be nice, will he regress first thing with a new teacher and possibly new kids in his class ? Hopefully not!

So this summer means new adventures, new places to go now he’s toilet trained, with his level of understanding that little bit better we can try places he’s not liked before maybe. We can go to places he’s been before and try new things. And if all else fails we have the pool in the garden so friends can come play!

Posted in friends

Party time!

When your friend of 30 plus years invites you to her children’s party, the child who’s class Z should have been in, of course I said yes, this is a mate of 30 plus years and I was thankful that Z was invited. Thankful that someone wanted him there. As a parent of a child with autism the party invites dry up. We’ve been extremely lucky with the friends we have and he does get invited but again I know we’re one of the lucky ones.

I thought the hard part would be sitting in a room of people some I know but not really enough to sit at the side of and talk to. Would seeing the difference in Z to other children his age, the class he was signed up to be in, the children he should have been playing games with at break and parents I should have been talking to and heading on nights out with been emotionally draining?

How Z was going to react I had no idea, a strange room full of children he didn’t know.

We lasted an hour and forty minutes. Yup out of a two hour party.

Yes, he ran, he jumped he attempted to join in. He even used the toilet.

But what really surprised me was how the parents didn’t seem to know one another.

Now when Z started Sen school I had this image that I wouldn’t get to know parents, wouldn’t make new friends. Of course that was all wrong, I’ve made some amazing friends some of those parents their children are not even in Z’s class. But I think it’s the opposite to mainstream. Talking to a friend there she said no they not really friendly they’ll say hi etc but that’s it. I was shocked. What happened to the meeting friends, play dates and drinks?!

Have social media taken away new friendships ? Do you not need to make new parent friends. If so how sad is that. Or has life really gotten that busy that no one has time to stop and chat anymore.

Or is it in a Sen school we tend to lean on one another that little bit more? There’s no competitiveness if one kid does well we as parents all celebrate! Even the silly small achievements, if your child stands on the stage for two minutes in the Christmas concert on day two after refusing to get on it in day one, we smile and we’re so exited. Of if the child touches a new food we all get excited for that child and the touched food. I don’t think any parent there gets jealous of any child. I know from other mates of children in mainstream it’s come up in conversation before so say one kid has a book before theirs and they think it’s unfair this is just one example I can think of right now.

Not really sure where this was going.

I know my expectations changed.

I know Z done amazing, I’m so glad I had the opportunity to take him to a party, and I know I didn’t come out of there feeling emotionally drained but kinda thankful for what I have.

It’s proved to me today that I went with the right choice. Z has the best of both worlds he at the moment still gets invited to party’s he went and had fun and I learnt that not everything in life is what you expect it to be!

Posted in ivf

Ohana

Today I should have seen you for the first time.

Two of you maybe one.

Today will be a little empty, being places I was not meant to be.

Last night I dreamt that I was in the scan room, Z running around with me. I saw your flashing heart beat and you wiggling away.

My body maybe over it physically, mentally I don’t think I’m quite there.

I like to think this was your way of saying you’re ok, you’re free, you are with all your brothers as sisters that didn’t make it to the frozen stage where each of them continued to grow in the spirit world.

Family, nobody gets left behind or forgotten x

I know there’s things I have to do. I was rang to ask to meet a consultant, when asked why it was to do with a treatment plan. There’s no treatment plan there are no more. Then it was to make sure you’re ok. Surely I should have been rang to ask was I ok and did I need to talk? Is there a time frame to be ok? Will I ever really get over it? Speak to anyone and they have always remembered the heartache of loosing a baby. If that was last year 20 years ago or even more so I’m guessing it’s something that sticks with you until the day you die.

Of course there’s going to be times when I’ll think I should be here or doing this. But as a person you adapt, you don’t put those emotions out there wearing them like you wear your clothes. Ok I may be quiet but everyone can have a quiet day right.

Yes I’m still quiet over here. I have a few posts half written, ready to finish to publish and then we’ll back to normal. What ever our new normal is!