Travels to Diagnosis

These are our travels through the Autism diagnosis process and beyond.

Diagnosis….? And new family member. — November 30, 2017

Diagnosis….? And new family member.

Kind of been dreading and looking forward to today in equal measure. It was the first appointment at pediatrics to start the official diagnostic assessments for Miles.
I was looking forward to it because we, hopefully, will get vindication for our fears and concerns for Miles and dreading it for the same reasons and also because we might not get the answers we are expecting.

It seemed to go ok, the consultant we saw was friendly and approachable and attempted to put all 3 of us at ease. We were in with him for about an hour and during that time Miles was pretty restless, didn’t like answering questions, made some eye contact and fidgeted. He only really sat still after he asked for the tablet so he could play games. Obviously there was a physical examination which Miles mostly giggled through.

Thankfully the consultant agreed that Miles has difficulties in some areas. Attention deficit was mentioned but he also wants input from Rob, myself and school in the form of questionnaires and we’ll probably have appointments with other health professionals before any conclusion is reached because until he gets further information he doesn’t know which, if any, diagnostic standards are reached. I will be surprised if none are but it is always a possibility.

When I received the letter informing me about the appointment, I did groan a little as it was at 10 o’clock this morning and after the last hospital appointment I was dreading getting Miles back into school.
I don’t know if it was because Dad was there, if it was because I asked if he wanted to go to school on his own or if he wanted me to walk to school with him, or something else entirely, but he went in fine.
I don’t think I could have taken another hour sat in the car trying to get him into school like last time.

I sat going through the questionnaires this afternoon. I did as much as I could but it wasn’t that easy. The multiple choice, tick box ones were ok but the third one, requiring long answers about facial expressions I’ve observed, ways in which he gets my attention, his interaction with other children and his imaginative play etc is much harder so will have to revisit that over the coming days.

Aside from today it’s been quite hectic. I took a friend with us on Saturday, when I took the boys to buy Christmas presents for each other. I had a really good time but Sunday I paid for it physically.

I didn’t get up until lunchtime, then after feeding us we went to see another friend. She currently has all six children, plus the partners of two, at home. Then there is the menagerie of 5 dogs, 8 cats, a guinea pig and some hamsters! Her eldest son and his partner have just been offered a flat and are moving out soon, along with two of the dogs, three cats and the hamsters. This has come just in time because the girlfriend of her third son has just found out she’s pregnant. To complicate matters the lass is epileptic and allergic to cats! I had been asked if I wanted one of the cats, a pregnant female by the name of Sophie. I didn’t feel that I could cope with introducing a pregnant female to my 2 and then looking after a litter of kittens and rehoming them, so I suggested she take Sophie to the RSPCA for rehoming and we came home with a 6 month old kitten called Tim.

He’s so small compared to Socks and Spike that I’ve started calling him Pipsqueak! He seems to be settling in quite well and Spike is starting to accept him. I think it will take Socks a little bit longer; if Socks doesn’t accept him then Tim will also have to go RSPCA for rehoming as I have to put the needs of the older 2 cats first.

I wasn’t even thinking of getting another cat yet but he’s the 6th cat I’ve had and I’ve only been actively looking for a cat for 2, the other 4 have been ‘happy accidents’ so I’m hoping Socks chills so Tim can stay.

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Illness, disability and parenting — November 16, 2017

Illness, disability and parenting

One thing that every parent or carer knows, is that looking after children is hard work, even when everybody in the family is well.
When you add single parent, illness or disability into the mix, things become harder.
When you have all three, things are really tough.

For me, personally, managing on a day-to-day basis is a struggle at the best of times. I am so tired all the time, even after a good night’s sleep, that keeping up with the housework just doesn’t happen. I am trying to get to the bottom of why I’m so tired all the time but so far I have no answers.

Recently I have been trying different strategies to get the boys to help me around the house. Some have been more successful than others but I have still to find something that will work for more than a few days.
Part of the problem is days like today. I had a chilled time at the craft course this morning and was planning on coming home, having a nap and some food before going back for the kids this afternoon.

That all went out the window almost as soon as I got home. Socks jumped on my lap for some fuss and almost immediately I found a big lump on his shoulder which, on further inspection, turned out to be an abscess. I squeezed as much of the gunk out as I could and then phoned the vet and Rob.
The trip to the vet was straightforward. I had already got all the gunk out, so it was simply a matter of washing out the wound and giving him a shot of antibiotics. £63 later we were back home, I was able to get some lunch and a drink, before I carried on with the corner to corner blanket.
Because there wasn’t any time for me to have a nap, walking to school was painful. My whole body felt heavy, almost as if gravity had been increased and by the time we got home I was so tired and achy that any thought of doing jobs went straight out the window. Old habits die hard – the boys went straight on the computer and tablet, I went to sleep and the meal I had planned for tonight didn’t happen either.
I came to bed just after 9 p.m. I so wanted to go to sleep.
At this point I have a choice of three options: 1) I can go to sleep, 2) I can stay awake until about midnight or 3) I can go to sleep but put the alarm on for around midnight.
Third option really isn’t a choice as once I’m asleep I don’t want to get out of bed again and will probably just turn the alarm off. That leaves staying awake or going to sleep. What’s the difference? Well, if I stay awake I can wake Miles up, send him to the toilet and hopefully his bed will stay dry. If I go to sleep I will end up with extra washing, more than likely including the duvet. I have to work out the lesser of the two evils. Will it cost me less in terms of energy to stay awake snuggled into bed or will remaking the bed and doing two loads of washing be better? With the washing at least I can get miles to help, or try to. As I’m not guaranteed the help,: It’s probably better to stay awake, even though my legs hurt, my hips hurt and my back hurts and the only way to get rid of the pain is to sleep.

A couple of things came up for me this week, health wise. Firstly, Rob found a couple of articles about Lady Gaga and her diagnosis of fibromyalgia which he sent to me. He then said that I should print off the first article, take it to the GP and ask if I have fibromyalgia. It Would make sense of the pain and fatigue but it’s not what anyone would wish for.
I then discovered that the compulsion I have for picking is not just a bad habit but is a recognised disorder called dermatillomania! I’d never heard of it before last night but it’s quite gratifying to know that I’m not just being weak willed and that it is actually a psychological issue, along the lines of OCD.

Add the PDA in with all this and it’s no wonder that I struggle. If outsiders came into my house they would think that I was lazy and couldn’t be bothered when in actual fact nothing could be further from the truth. I hate how untidy the house is. I hate not being able to do something about it. I hate that I am not teaching the boys how to keep a house clean.
I wish I could teach them to cook, that I could play with them more, that we could go on bike rides or for long walks along the beach.
I wish we could be normal, whatever that is!

I will not dwell on that. I need to be thankful. I am thankful.
Thankful for my two gorgeous boys. Thankful that I can still walk. That I can still get them from school myself, most of the time. Thankful that the school is so supportive and that the boys are doing really well. Thankful for so many opportunities, for friendships, for laughter.
Even when things are really bad, I have so much to be thankful for. If I can keep that in mind then hopefully life will be a little bit easier to cope with.

Remember, Remember — November 4, 2017

Remember, Remember

Remember, remember the fifth of November,
Gunpowder treason and plot.
We see no reason
Why gunpowder treason
Should ever be forgot!

Bonfire Night.

Bonfires, fireworks, glittering lights lighting up the sky. The smell of black powder pervading the air. Sparklers making patterns of light against the dark.
Children stood, mouths agape fascinated by the shapes and colours, fingers in their ears against the noise.
I think in some ways Bonfire Night is my favourite night of the year. For me it means family, fun, excitement, ritual, potatoes baked in their jackets and tomato soup. Heinz of course!
We always had bonfire night at my grandparents house. Grandpa would clear away his vegetable patch in the weeks running up to the 5th of November and the bonfire would be built.
We normally had the fire and fireworks on the nearest Saturday to the 5th. Family and friends would arrive late afternoon and we would play a few games. Apple bobbing, with apples tied to the washing line, hide and seek or sardines for the kids and if there was enough of us a round or two of murder in the dark.
While the kids were playing, the mums would be helping Grandma organise food, the dads would be sorting the beer and Grandpa would be sorting the bonfire, including putting the guy on top, which we cousins took turns to make.

When everyone had arrived and all the fireworks had been collected into a single box, excitement would mount as sparklers were handed out and the bonfire lit. Then would come the big moment as the first firework was chosen, put in place and set off!

I didn’t want the fireworks to end but of course they did.
Everyone went back into the house, removed coats, shoes, gloves, hats, found somewhere to sit, for me that often meant the floor, and then the baked potatoes and tomato soup in mugs would be brought round. Yummy!
Feels strange now. Family is still really important to me but I have no contact with anybody anymore. We can’t do family Bonfire Night quite the same way that I used to, so we need to find new ways to celebrate and to make family memories for the boys.

We went to an organised display tonight. Obviously completely different to the family garden parties but it was excellent. It was run by Scarborough Autocross at their track in Hunmanby, in aid of the Yorkshire air Ambulance and was free to get in. There was lots of different food choices, excellent viewing of both the bonfire and the fireworks and the marshalls were well organised. We didn’t know in advance but there was also a guy competition. I would definitely go again next year. Most organised events don’t allow you to take your own fireworks or sparklers so we didn’t take ours with us, I think we might have a trip to Shelley’s tomorrow and share them with her.

Another memory for the boys to make 😃

(My apologies for the poor photo quality. I don’t have a card reader and as I can’t easily use images from my DSLR, it gets left at home most of the time ☹)

Eureka! and IKEA — October 31, 2017

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.

Seeing how the skeleton works when we cycle  intelligent robot building with pre programme blocks9

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.

Miles sitting on a rock outside at EUREKA!

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 — October 30, 2017

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.The results of our pumpkin carving

 

Quote of the week — October 16, 2017

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 — October 12, 2017

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 — October 7, 2017

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! — October 2, 2017

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 — October 1, 2017

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.