Eureka! and IKEA

EUREKA!

On Wednesday of half-term we travelled to Halifax to visit Eureka! Miles has been wanting to visit for some time and was quite excited that we were going.
They both loved the temporary exhibition which consisted of lots of different activities based around electronics. There was a car game, robot building blocks, smart lights, an edge detector which created images, an ant eater game, music creator and various other things for them to do. We spent quite a bit of time in this exhibit when we first arrived.

We managed to move onto the next exhibit which was all about the body. We measured ourselves, weighed ourselves, investigated various different parts of the body, tried some role playing, cycled, jumped, sniffed, and looked lots.

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About half way round this I noticed that Miles was definitely flagging, his energy levels hadn’t been that great to start with, either. I think it was just tiredness or reaction to flu vaccine because he hasn’t been ill at all, just a bit quieter than usual.

After the disappointment of the Photobooth being switched off due to technical difficulties, we decided it was time for lunch.

As we were sat eating our picnic, some friends from school came round the corner! We didn’t know they were going and they didn’t know we were so all of us were a bit surprised. We had a quick chat then they went off to find their next activity.
By this time miles had had enough and wanted to go outside. It was noisy and busy inside and I think he was feeling a bit overwhelmed buy it all.

Having had a break we went back in and looked at the garage part of the museum. Followed by the second half of the temporary exhibit. Miles had really had enough, although borrowing a pair of ear defenders fromthe information desk did help somewhat.

Maybe next time I say ‘find your ear defenders to take with you’ he might listen but I doubt it!
I was really starting to hurt by this time, so when he asked if we could go, I agreed.
We will definitely be going back to see more of the exhibits. We hardly saw anything but the boys really enjoyed it. The entrance fee is actually not just for that day but pays for entrance for a full year, so next time we go it will be much cheaper.

IKEA

Rob decided we would stop at IKEA in Leeds, on the way home. I thought we would pop in for a quick cup of coffee and a cake but no, we went around the entire shop before going to the cafe.,
I have to say I really wasn’t that impressed by the food, there were not many cakes to choose from and the boys both chose chocolate sundaes but there were no teaspoons to eat them with. They had to use the big plastic spoons that were part of the children’s cutlery and not very nice to eat with.
Rob couldn’t get the coffee he wanted because they had run out of tokens. At least the soft drinks were refillable.
Rob and I both picked up a few bits as we walked around. We both got bins and I got waterproof mattress covers, christmas wrapping paper that I think I will use for birthdays as well and a few other bits that I probably shouldn’t have, but never mind.
Although the traffic wasn’t too bad on the way back, we decided it was getting late so stopped in York to have tea. I’m glad we stopped because it was well after bedtime before we got home and I was so tired and sore I don’t think I would have managed to cook tea.

Half term comes to an end

Heck time has flown!
We have come to the end of half term & it’s been a busy week. We’ve seen friends, gone for days out and done things at home.
We’ve also had lots of trips to the doctor’s. The first of which was on Monday last week for Miles to have his asthma assessed, followed by us both having flu inoculations. Thursday evening, for a very rapid trip to the doctor, after I spotted a discharge from Scott’s ear. I know we knock the NHS at times but 45 minutes from ringing the surgery, seeing the doctor, getting the prescription and back home again can’t be bad. We only just got there in time though as we had 25 minutes to get from the doctor’s to the pharmacy before they shut. With them being so close together it was ample time but if I’d been just half an hour later in spotting the discharge, it would have ended up a trip to the hospital.
Friday morning I went to the doctor to try and get something done about my constant fatigue. My vitamin D dose was increased along with a request to repeat my blood tests but only to do that after I’ve got rid of my tonsillitis. At least with both Scott and myself on antibiotics we’re both more likely to remember them.

Behaviour has been up and down the last few weeks with some really good days and some equally horrendous days. Some of this, of course, is due to them being 6 and 8, boys and their parents children! There has definitely also been some autistic behaviour. One of my big struggles with this at the moment, is deciding whether the behaviour is autistic or due to age. I feel this is something that I really need to work on because, if I judge incorrectly where the behaviour is originating, I don’t take the correct approach and the behaviour escalates out of all proportion.
I’ve had some books delivered from Amazon on PDA and I’m really hoping these will help me to differentiate between the age-related behaviour and the autistic or PDA behaviour.
This is a really hard learning curve for me and I know I will continue to get things wrong. I just hope I can be a good enough mother for both my boys.

We had a really good day today to end the holiday. We had a lazy morning followed by pumpkin carving at a friend’s house this afternoon. There weren’t even many complaints when I said it was time to go, despite the fact I hadn’t given them any warning.
I am so grateful that I have friends we can do things like that with. We can’t do them with their Dad and if we stayed at home I wouldn’t do them on my own. All 4 of us had fun carving the pumpkins and I think we did a pretty good job considering it was the 1st time any of us had attempted it.

The results of our pumpkin carving. My friend did the one on the right, Scott drew and carved most of the middle one himself and Miles drew the dragon on the 3rd pumpkin and I carved it for him. It’s a Terrible Terror from the Dragons of Berk tv series and Rise of Berk game.

 

Quote of the week

“Well! I don’t know how they got there!”

We’ve been hunting Miles’ glasses for over a week now. I’ve been crawling on the floor in their bedroom in agony looking for them because Miles swore blind he’d left them on the chest of drawers next to their bunk beds when he went to sleep whichever night he lost them.

It does go to show how observant I am (not very!). I finally found them today. I was sat in the end of my bed contemplating what I needed to do and there they were, sat next to the doorway on my chest of drawers. I’ve only walked past them 4 times a day since they’ve been lost and today was the first time I spotted them.

I called Miles up to show him where they were and that’s when I got ‘Well! I don’t know how they got there!’ Almost as if I’d decided to move them!

Oh well, at least they’ve been found!

In School Assessment

We had the assessment of Miles at school today. I didn’t realise just how anxious I was about it until I arrived for the meeting with his teacher and the lady who had been observing him. Shes going to write a full report but, as far as I am concerned, its all good.
Basically she confirmed what we knew already – sensory processing issues, socialization issues, avoidance issues etc.
The report will go to paediatrics and she was glad the referral had already gone in.
She wants school to set up a lego intervention for him to gelp with his social skills and a sensory perception something, not sure exactly as it was a lot to take in (and being me i didnt make notes) but I’m sure I’ll find out soon enough, either from the report or when they do whatever it is. There will ve questionnaires for both school and me to fill in and she wants me to set up a visual timetable thing at home. They going to provide a blank base along with some pre printed images and blank cards. They’ll show me how to use them which is just as well as I’m not sure what they mean. I think I got the jist of it but not enough to be confident using it.

I asked about having an assessment for Scott too. I know I’m seeing more AST with him as well, but i have no idea how to tease out if its learnt behaviour, him being 6 behaviour, symptoms of his own issues or me being over sensitive. Going to see how the visual prompt things work with Scott, once they are up and running for Miles, and if needed school will do a referral for him as well.

I know I’m having a few issues with the school office and parent pay, which is more than a little annoying, but the support from the academic staff has been great. I couldn’t ask for more, they’ve been on the ball, taken my concerns seriously, always been willing to chat (at appropriate times), put targeted speech and language programs in place for both boys and never had an issue with external professionals going into school to work with boys. Long may it continue!

That Friday Feeling

What a Friday I had a few weeks back. I ended up with five different meetings to go to, to say I was exhausted by the end of the day would be more than fair.

It started with meeting Miles teacher at 8:15. I wanted to share with her my thoughts about PDA. I was so thankful to find out that she’s had students with PDA in the past and could see how this could fit Miles. It will be so much easier having the school already on board when we finally start the diagnosis process.

I went straight from that to a Macmillan coffee morning, thankfully also in school. I hadn’t had time to finish my second cup of tea before it was time for the third of my engagements, the school harvest festival. I hadn’t intended to go, but Miles had seen me waiting to go to the coffee morning and had asked me to go. I saw him looking for me as he entered the hall with his class but he couldn’t find me. The third years had put together a reasonable little performance and the Early Years kids were cute singing the ‘Big Red Combine Harvester’. The big smile on Miles’ face as he spotted me on the way out of the hall made me glad I’d gone.
I had just enough time go down to the local library for the fourth of my meetings. This time it was a Yorkshire Coast Families parents coffee morning. There weren’t many of us there which I was glad about that as it meant I had a chance to get to know people better. There were parents there who have children with PDA, it was good to know that I am not alone and to be able to discuss issues that other parents might not understand.

Finally I went to my art therapy group. This is one thing that I really look forward to every week. It gives me a chance to be a bit more expressive and not feel quite so hemmed in as I can do. Wouldn’t you know it, one of the ladies there has a daughter with PDA! Strange how once you start talking about things you never knew existed, they suddenly pop up everywhere!

The one thing that I have taken away from all these meetings, with so many different people, is that the only person stopping you doing something, is you. If you are prepared to put in the work and are prepared to get out of your comfort zone, you can achieve anything. It doesn’t matter if you have a diagnosis or what that diagnosis is, if you want to do something badly enough you will find a way to make it happen.

So let’s make it happen!

Hips and a lightbulb!

The last couple of weeks I’ve been in pain. First with my right hip. The GP told me what I’d got, after some prodding and poking, to which I replied I’ve got whaty-what-what-itis?’. It was Illiotibliaitis. The sack between the bones of the hip joint and the gristle over the top was inflamed. Stretches and ibuprofen gel from pound shop was the treatment for that one.

A week later after making the mistake of going head to head with Miles about tidying up I went over to him to turn off the tablet. As I was leaning over he pulled on my arm. Everything felt fine for a bit then my left hip started to hurt. By bedtime I could hardly move. That was on the Saturday. Tuesday, after paracetamol, heat pads, deep heat cream and more paracetamol I gave in to my better judgement and another visit to the doctors. This time it’s sacrioilliacitis. A bit like twisting your ankle, but in your back. And a LOT more painful! Co-codamol added to what I was doing already helped a lot but, to quote Wat “Pain! Lots of pain!” *

As for the boys, they’ve pretty much carried on as usual. Still getting ‘I don’t want to go to school’ from both of them and they’ve both still been going.

I’ve been reading about autism most days. Reading about different profiles and the different behaviour patterns was something I found quite frustrating because, although I could pick bits out that Miles exhibited, none were a good fit for what I was seeing. I could see that autism in some way was in him but just what form it took I didn’t know.

Then late one night, long after I should have been asleep, so more like early one morning, I had Gru ‘Lightbulb!’^ I found a fit!

Oh my, it was almost perfect, and the more I read the more I was sure. There was a questionnaire online, not used as diagnosis but to indicate if someone showed traits of this particular autism sub group. I sent Rob a link with a ‘see what you think’ type message. We each did the questionnaire thinking about Miles. Rob scored him as 55-60 depending on interpretation of a couple of questions and I scored him at 58. The researchers who devised the questionnaire advise a score of over 50, for Miles’ age group, as showing an ‘elevated risk of having a profile consistent with having PDA.’

PDA? Oh yes, sorry. I haven’t actually told you what I’d found have I? It’s Pathological Demand Avoidance.

Simply put, every demand put on the person with PDA puts stressas on them that they are unable to cope with. I guess it’s a bit like you or I being told we have to perform brain surgery, or a brain surgeon being told he has to defend someone in court. These demands would have us sweating and panicking, our adrenalin would be pumping and we would be ready to flee.

I’m not asking Miles to perform brain surgery or to stand up in court and defend someone. I just want him to get dressed, have breakfast or do a job for me. School aren’t asking him to do amazing feats of gymnastics or engineering, just to do some writing or do some maths but each increases the anxiety felt by the PDA sufferer.

Each of these requests is a possible point of explosion if the initial request is miss-handled. It’s no good me saying, ‘get dressed now, please.’ That’s a demand and he sees it as taking away his choice. Most people understand that there is no choice but to go to school so getting dressed is necessary and, to some degree, he understands this too but take away choice and you get a straightforward ‘No’ in reply. So how to get round this? I’m still learning different strategies but ‘could you’, ‘can we’, ‘this one or that one’, ‘how about if’ and variations on the theme seem to work. Leaving him to do it himself, giving him time and space to make up his own mind to do what he knows needs to be done also seems to work. Strangely he often changes from refusing to get dressed ready for school to wanting to go 45 mins early so he can go to breakfast club!

I now have a stash of £1 coins ready for this occurrence 😉

*Knights Tale

^Despicable Me

End of tether

Had a word with Miles teacher this afternoon and the form I signed at end of last term was only sent last week, she did say they react quite quickly but it still could be a few weeks. When they do come and assess him the report will be shared and at that point they’ll suggest strategies to help but that doesn’t help me this week or next.
I have nothing left to give. I need help but don’t know where to go and can’t afford to pay for any and I feel totally isolated.

I wrote this about a week ago and completely forgot to post it. Shows how low I was.

Shoe Shopping

Having just about avoided an incident with Miles on Wednesday, Friday turned into a full-blown ‘I’m not going to school!’ and all because I wouldn’t let him ride Scott’s bike, it was to late when he asked otherwise I would have said ‘yes’.
I ended up having to push him physically from home to 2/3 of the way to school. It was really hard work and by the time he decided he wasn’t going to get the better of me and he would walk by himself I’d hurt my back.

I’d arranged to help Rob cut Toffee’s claws so I waited for a bus as I wouldn’t have been able to walk that far I was in so much pain.

Toffee didn’t like us much but we got her claws clipped without incident, unlike when I was driving past the police station near Rob and some idiot saw fit to turn the wrong way into the one way system! I saw him coming and we avoided a collision At least the rest of the drive to Shelley’s was uneventful as were the rest of my travels that day.

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Had a decent weekend. Saturday we went to Bridlington with Shelley. We went swimming; after lunch at Burger King we went to Pot a Doodle Do and did some ceramic painting. We should be able to collect our items next week.
Sunday, Rob and I took our life into our hands in some ways and went shoe shopping with the boys. It was a bit of a struggle, both to get them to get ready to go out (usual ‘I’m not going to’ from Miles) and to get them to pay attention in the shop, but not as bad as it might have been. We came out my bank account £90 lighter (we only bought 2 pairs of shoes! Still got 2 pairs of trainers to get) and having almost avoided me losing my temper at bad behaviour. I hate it when they run round shops. 😡

Afterwards we had a coffee and cakes and then we took the boys to a play park for a little while.

True to form Scott headed straight for all the equipment that spun. He did play on some of the other things but not many and always headed back to something that went round in circles. Miles tried to use the monkey bars but as soon as he moved his feet off the platform to hang his feet touched the ground. He just gave up and went on to something else.

While they were playing Rob went to get some shopping and I sat and crocheted. It was nice just to be able to chill for a bit while enjoying the sunshine.

Once again this morning I had Miles not really wanting to get dressed but I managed to get him round. They were a bit late in because of my doctor’s appointment but we did get to school and with both in uniform.

Last night I had fallen asleep without my mask on. I have really felt the effects today and have been able to do very little. To think there was a time when I thought using the CPAP machine was a waste of time! Now that I’m using it regularly I am far more aware of the effects of not using it and how much more energy I have when I do, even though I still feel tired all the time. It’s not even 9pm but I’m going to bed so I’ll wish everyone a good night x.

Ideas on a postcard please.

but I suddenly remembered that we hadn’t done his inhaler. That distracted him enough and I got him out the door almost before he’d finished putting everything away.

He had started kicking off, saying ‘I’m not walking or scooting!’ all because Rob said he would pick us up if the weather was bad. As we had bright blue skies and the sun is shining, there was no way we weren’t going to walk!
Having narrowly avoided a battle of wills, I spoke to a member of staff at school saying that I wanted a meeting so that we could put into place a plan to deal with instances like Tuesday. I said that the GP we saw on Monday had agreed with the suggestion that Miles has autistic spectrum tendencies and was happy to put in a referral to paediatric. The reaction to the meeting request was ‘yes I can do that once we’ve got a diagnosis’. Sorry school, that’s not good enough! I don’t need a meeting to deal with this in 6, 8, 10, 24 months, I need something *now*. I need to know what to do if I have another incident like yesterday.

I also need to work out a strategy for when he refuses to do things at home, what that will be I have no idea. Ideas on a postcard please!

Point blank refusals

Has it really been 10 days already? It feels like much longer.

First day back at school was a bit of a nightmare. Miles decided he wasn’t going to go and refused point-blank to get dressed. I phoned school and left a message on their answerphone saying that he was refusing to do anything, that I didn’t know what to do and that I needed help. I did manage to persuade him to get dressed but not in uniform. Hey, getting dressed is a start!

We all had breakfast and having sorted Scott out as well, it was time to go.
Miles had to come with us because I couldn’t leave him alone while I took Scott to school so that got him out the house. Rob had come to collect us in the car and I couldn’t leave Miles in the car with his dad on his own, so that got him up to school. I then suggested he told a member of staff why he wasn’t going to stay, which he refused to do, so I told them.

They walked over to the bench together and sat having a chat, the staff member trying to persuade him to go in while I waited off to the side. After a little while the head teacher joined in the conversation but progress was still not being made so I went back over and said, ‘Come on Miles let’s go!’
He still sat refusing to move so in agreement with the head I said goodbye and came home.
I felt awful leaving him but I knew that I had to, that he was in good hands and would be looked after. At lunchtime I got a phone call from the school to say that he was in, had had lunch and was fine, which helped me to calm down. We have had issues like this with Miles ever since he started nursery but this is the first time that I’ve left him and he hasn’t been in school.
The rest of the first week was reasonably ok. We had the odd ‘I don’t want to go’ from both of them but nothing drastic and they went in without any real issues. Just seeing what would happen if they pushed, I think.

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Yesterday was the start of the second week and thinking I had a doctor’s appointment, I put them into Breakfast Club. As it turned out I was a week early but better than being a week late. I ended up taking Miles to see the GP after school anyway. Every year he gets a cough that lingers, it’s never on his chest but just won’t shift. It came back last week so wanted to do something quickly rather than the usual wait and see with antihistamines for good measure. As he’s now old enough, the GP set him up with a peak flow meter and a brown, preventative, inhaler. Even after just 2 treatments, last night and this morning, the peak flow had improved from 180 last night to 220 tonight. Definitely a step in the right direction.

While we were there I asked about a paediatric referral, half expecting to be told I needed to see the same GP as last time for that. Not so. She’d read the notes from the previous visit before seeing us and having tried to get straight answers out of Miles about his running and PE she agreed with the suggestion of ASD and was more than willing to put that through. That means that everything should be in place now for a diagnosis, just got to sit and wait for it all to happen.

*******

Today Miles had a hospital appointment to get some new insoles. That went well with him being mostly co-operative, although far too interested in playing on the tablet. The next size up from what he’s got at the moment create a slight problem, as you are getting into adult sizes rather than children’s which means that they make the insoles wider as well as longer. This meant that they were too wide for Miles so he’s going to have to have some specially made. To do this they put his foot into some soft foam to take an impression of his foot which is then used to produce the insole. Pretty clever stuff really! Anyhow we were done and dusted in no time the fact we only parked for 40 minutes.
The problems started when we got back to school as he refused to get out of the car. I wandered up to the school and told the receptionist what was happening and requested a member of staff to help. There wasn’t anybody available at that time so I went back to the car, moved it nearer the school and waited, and waited.

An hour later, having had a text conversation with his dad, who needed the car back, and getting hungry, I decided that i wasnt getting anywhere trying to wait him out and enough was enough. I got out the car, went round to his side and physically pulled him out, locking the car behind us as I did so. Holding on to his arm so he couldn’t run, I managed to push him with my body into the school. Seeing struggle to get him in through the door, the receptionist went round and open the second door into the school so that he couldn’t escape. I sat and cuddled him for a while until a member of staff came and then I said goodbye and that I’d see him later.
I left the school in floods of tears and had to sit in the car for a while before I could drive the car back for Rob.
Not knowing the mood Miles would be in when he came out, Rob came with me to school at home time. The little so and so came out of school smiling saying he had a good afternoon. I couldn’t believe it but was really glad that he had had a good time.

I ache all over from having to get him into school but I am so glad that we didn’t let him do karate last year. He has strength but doesn’t know how to use it, if he had done karate it would be a different matter and I very much doubt I would have got him in.

This evening he refused point blank, again, to help out with any chores, but then got upset when Scott, who had helped, was allowed to watch some TV and he wasn’t. The complaint of ‘it’s not fair’ fell on deaf ears. If he doesn’t help with jobs he doesn’t earn privileges, maybe it’s harsh but it’s a lesson he has to learn.

We had a nice cuddle before he went to bed, I managed to alleviate some of his worries about the storm that is supposed to be coming tonight and he went upstairs reasonably happy.

Let’s just see what happens tomorrow!