Travels to Diagnosis

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

It’s been a while.. — Dec 5, 2019

It’s been a while..

About 7 months, in fact, but nothing much has happened, so not a lot to blog about.

Well, that’s not quite true. Lots has happened around the assessments, as well as in life, but nothing that resulted in noticable forward movement.

Not too long after my last post, we were informed about the changes in assessment providers and things moved forward, as in lots of consent forms and other paperwork was sent out, completed and returned. Some, that could be emailed, was literally sent back within minutes of receiving forms. Most unusual for me!

After that flurry of excitement and anticipation everything went quiet again. Until today.

This morning I got fed up of sitting and waiting.

This morning I rang up and asked what was going on.

This morning I agreed to have the whole of Miles’ assessment done online.

I have now had emails regarding suitable appointment times and a couple of short questionnaires to complete.

I know that the initial appointment should take about 90 minutes, that there will be a couple of other ones, the second of which could be 3 hours long. Not looking forward to that one. Then there will be a meeting to decide if he meets ‘diagnostic criteria’ before we get diagnosis and/ or feedback.

Scott will have to wait a bit longer as he has to see someone face to face as he’s too young to do it all online. The lady I spoke to this morning wasn’t sure where he is on the waiting list, but she said she’d find out and let me know.

I’m not holding my breath.

Hospital issues. — May 23, 2019

Hospital issues.

I have just spoken to the ASMPACT secretary. I feel sorry for her, she getting a lot of grief at the moment.

I’m not good with keeping up with the news, and my memory? Like a sieve, so I’m always a bit behind the times. I left a message earlier in the week asking about the appointment for M. She rang back a little while ago. The hospital, in their infinite wisdom, decided to change assessment providers and stopped ASMPACT, so no assessments have been done since whenever it was last year that they used up all the allocated assessments. They were supposed to restart in April, but didn’t. M is still 17th on list.

When we were told, at the hospital, that we should have a dx by spring, I was so happy. Not so happy to learn that he was 17th on list, but should be seen by June. Now I’m really cheesed off.

There is still no contract in place, no time frame, that I’m aware of, for one to be in place. It could be this time next year.

I’m feeling that this is now getting critical. We’ve got less than 15 weeks before M goes into year 6. There’s then only a few weeks before we need to say which secondary school he wants to go to.

I know it might not seem like a big deal, but that bit of paper could make a huge difference. Yes, he should get support according to his needs, but once theres a dx in place other things come into play. Things like: accessibility to schools further from home (catchment rules change with dx), cheaper/free transport to schools out of area if required and child can not be excluded.

Might not seem like much, but having the option to choose a school with an ASD unit attached, in preference to the local senior school, which doesn’t deal well with pastoral issues and doesn’t have a good academic record, seems to me to be a really big thing.

I’ve been worried about September 2020 for some time now (as in years rather than months) and debating the best thing for my son. The reputation of the local school is not good, but most people don’t have an option. I was thinking that it would be best for him to go with the kids he knows, to a school where older children also know him, and may be able to help him out but now I’m not so sure. Home schooling isn’t an option I want to think about. I know that I would be horrendous. We would clash so badly and he is so good at manipulation and time wasting that, coupled with my lack of energy and enthusiasm, nothing would ever get done.

I’ve left a message for PALS, I’ll see what they have to say when they respond.

I will be writing to our MP again. Doubt it’ll make any difference but at least I’ll have tried

In the mean time, I need to do some research into the process of choosing secondary schools, out of catchment area rules, transport costs etc

I have about 18 weeks. I will be ready. I don’t have a choice.

Autism, Austerity and the To Do List — May 20, 2019

Autism, Austerity and the To Do List

I wrote this, as a reply to a post on another blog, this evening:

Austerity politics are harming so many of us ‘little’ people. People the current government want to forget. It sucks.
You are spot on – we, as parents, shouldn’t have to fight so hard for our kids, the resources we, they, need should be available. It is not our fault our kids need extra help to navigate the neuro-typical world, nor that that world refuses to make adjustments for others.

We have to fight hard for our kids at the best of times, even when they don’t have any extra needs, so when they do have extra needs, the fight is harder.

Schools, and the LEAs in general, don’t have the resources they need, neither does the health service.

I’m still waiting for an appointment for M to see ASMPACT for his assessment. Given I was told he should be seen in June and no sign of appointment yet, I’m guessing it’ll be nearer July, which is still ok but we’re away for a week and knowing my luck, that will be when the appointment will be. I rang today to try to find out what was going on but answer phone and no response as yet. I’ll keep trying. Secretary only works until 2pm, and I’m sure that’s lack of finance rather than lack of work.

At least we managed to get a cancellation meaning that S will be seen in August rather than having to wait until October but August still feels like an eternity to wait. That reminds me, must fill in all those questionnaires for the hospital.

Apparently S has been seen in school in connection with both referrals I requested (would have been good to have been informed without having to ask) and we should have the reports after half term. Sooner rather than later I hope.

I emailed my MP a month or so ago, regarding the waiting times for ASD assessment. Apparently I’m not the only parent/person questioning the wait as another MP had asked the same question the day I sent the email.

I was sent a copy of the minister’s reply.

Now, I might be wrong, but I consider myself to be educated and fairly articulate, with, I hope, a reasonable understanding of the English language. However, I guess I’m not well versed in political double-speak. The reply had a lot of words, but didn’t make much sense. I think the minister was trying to say something along the lines of ‘we need to do some research into this matter and then, when we know more, we’ll make a decision’. I agree that decent decisions can only be made with appropriate information but this has been an issue before parliament before (2017 I think. I know there was a vote but can’t recall outcome) so if they don’t have the information yet I beg to ask wtf have they been doing all this time?

Apart from wasting resources on….but that’s another rant entirely!

via Autism, Austerity and the To Do List

Trouble with child number 2 — Apr 3, 2019

Trouble with child number 2

Omg. What a morning! Been in school with S. I know his behaviour has deteriorated since Christmas but he was a brat this morning.

Had literacy first, and he was fine when it was listening and talking about the passage but the moment he had to write anything he just shut down. Hid in his t-shirt (pulled it over head) or under his table. Refused to even talk about what he could write. Felt like giving him a clip round the ear.

He lost his break, because he didn’t work yesterday afternoon, and was in danger of losing lunchtime too.
After break it was handwriting, which he’s quite good at, but refused to even open his book.

Then switched to history and the light came back on, he was interested, excited to take part, finished quickly and then helped others.

Its situational. The last handwriting lesson he did really well (saw it in book) so it’s not the lesson that’s the issue. I don’t think its anxiety driven either, he snapped out if it too quickly and too happily.

I have no idea what’s going on. No idea how to help. If he’s asked about it he shuts down. He won’t talk to me or his teacher.

Referrals to IMS and Ed Psych have gone in, and I hope that the assessments happen soon, so we can start to get answers or at least some ideas of things to do to help him.

I feel lost, alone and helpless. I don’t know how to help him.

No further forward — Apr 2, 2019

No further forward

At our last visit to the paediatrician, way back in October last year, he said we should have a diagnosis by spring. Here we are, into April, and I’ve not heard a thing about Miles assessment.

I was on one the other day, so I asked around and got the contact details for ASMPACT.

I emailed them and waited anticipating some good news. I got nothing. Not even a ‘thank you for contacting us’ reply. So I rang them and spoke to the secretary. She didn’t have the information directly to hand but said she’d get it and phone me back. Tbh I was expecting to have to chase her up, but no, she did phone me back.

She didn’t say when they stopped, but at some point they stopped doing assessments because they are ‘commissioned’ to do so many a year and when they reach that number they stop. Also, they only undertake a few every month.

Miles is 17th on the waiting list. We’ve been waiting since October. I dread to think how long the people at the top of the list have been waiting. If they manage 6 a month, which is what she reckoned they do, Miles will be seen in June. If they only manage 5, it will be July. So 8 or 9 months from referral, more than the 3 months the NICE guidelines recommend. Much better than the 2 years in other parts of the country.

We now have the added complexity of Scott displaying very similar behaviour patterns to those Miles was showing 2 years ago.

We’ve already asked for a referral to paediatrician to start the process all over again with him.

IMS (used to be EMS) referral has already been made, as has one for educational psychology as requested by GP.

Its yet another waiting game.

A year later but are we further on? — Dec 6, 2018

A year later but are we further on?

In short, a little bit.

We’ve been back to see the paediatrition 3 or 4 times over the past year, with the last visit being about a year from the first. Each time I’ve left feeling a little frustrated, especially after I discovered that these appointments were not the diagnostic appointments at all but an assessment to see if you need the assessment!

I can understand why you need to see someone slightly more specialised than a GP but it would be nice if someone actually explained the process fully at the start, so we knew what to expect.

At the appointment last month the consultant finally agreed that Miles should be referred to the multidisciplinary team that does the actual assessments (ASMPACT) and a couple if weeks later we received a letter telling us that they had looked at Miles’ referral and he will be seen by then in due course. Finally! Feel like we’re finally getting somewhere.

Diagnosis….? And new family member. — Nov 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 paediatrics 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.

Illness, disability and parenting — Nov 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 — Nov 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 — Oct 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.