Posted in Appointments

Precautionary

Poorly kids are the worst! 😭 Actually, I take that back… a 7 and a half hour wait in our local children’s A&E is the worst.

William hasn’t been feeling well since the end of February when he got his first (of many) cases for tonsillitis. Antibiotics didn’t clear it after the first dose finished so 5 days later we were back at doctors for a second dose. 3 days after the second dose ended he was still poorly so on Monday his dad and I took him back to the doctors (I feel like we’ve seen them that much recently that they’re going to invite us round for dinner at Christmas 😳) the doctor said he was fine but tonsils still a bit sore but no longer infected, the give him pain relief and he would be fine.

Fast forward to Friday and I have to take him to chemist as he has conjunctivitis because let’s be honest, it never rains, its pours 🌧 Drops received and starting to be administered, let bare in mind that my shoulder has gone again so I’m fine this one handed… its not easy even with two hands. Friday evening William was lethargic, hot to touch and clingy and he had barely eaten or drank all day…Not to mention the waterfall of slimy vomit that came out of his mouth and all over me. Honestly it’s like my kid aims for me when he’s sick 😫

Like any parent I was worried and ring my own mom for advice and then rang 111 who told me to take him into A&E as soon as possible as a precaution. Luckily I have some amazing friends who are used to being on standby when it comes to getting William places in a hurry.

We arrived at A&E at 8.15pm. It was busy, super busy. Kids were screaming, adults were moaning really loudly about how long they had been waiting etc. One parent told me it was going to be a 5 hours wait… she was wrong 😭

I want to talk about the waiting room, firstly the chairs are not built for 7 and a half hour waits with a gimpy arm. But that’s not my gripe… my issue is how unfriendly the waiting room is for a child like William. The lights are super bright and loud, some of them were flickering.the waiting room is busy with colour. Lots of different colours and sparkly fish hanging from the ceiling and the air con is loud. For an autistic child with sensory processing disorder that is a lot to take in for a lengthy period of time. It’s a difficult wait for most children but I’m sure other towns have sensory rooms for children like William. I’m almost sure the eye hospital next door has one or were at least trying to raise funds for one. It was also a nightmare that only one person could accompany each child, I understand that there is a limit on space but William needs to be restrained to be examined and unfortunately its not ideal with two arms let alone one.

Anyway that’s my moan over… the nurses who triaged us were brilliant. So patient with William and understanding. The doctor we saw was also amazing. Thankfully William just has a viral infection which will pass with calpol and time and even though the wait was long and painful I’m glad we went. I’m glad I made the 111 call and followed their advice because really you just never know with any child what is wrong but when they can’t tell you, it’s so much worse.

Hopefully he will be better soon and can enjoy his last 2 days of nursery next week. 🀞

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Posted in Appointments, Autism Assessment

Triage

Its not a word you would usually come across in day to day life.
When I think of it I used to be reminded of the scene in Pearl Harbour in which the nurses have to mark the wounded men with lipstick.

For us triage is part one of a much bigger process, a process that has consumed our lives and will continue to do so until William receives a diagnosis.
William’s triage appointment was today… As you can understand due to the current pandemic this appointment is not face to face but instead was done over the phone.

I’m not going to lie to you and tell you I slept well (or even at all) last night waiting for this call, the crazy irrational thoughts kept me awake…
‘what if they decide he doesn’t need to be on the waiting list and we have to start afresh in a different sector’
‘what if they say he is the way he is because we are shit parents’

What if I don’t say the right things?’

I know it’s irrational and crazy and so does Dave or at least that’s what he told me at daft o’clock this morning when I was still awake trying to ask Dr Google what they will be asking us.
Not that it helped any way as we couldn’t find a list of questions anywhere ❓❓❓Not very helpful for ridiculously anxious people like me who like to be prepared for everything.
This notebook (which I just had to find and get ready at for 4am to be prepared for a 10am call) has been with me to every appointment. The writing is messy and blurred from tears. Anybody but me would find it indecipherable but I take great comfort in knowing I have it and can refer to it when needed. It is like a comfort blanket and knowing I look over it to see what meetings we have had, what questions we have asked and what answers we have and have not received makes me feel like I am a better parent than I am.

The call came in literally as the clock ticked over to 10am, I was mid wee 😳 Appointments are never on time so I was sure this one would be the same. The woman was called Emma Gibson and she gave off good vibes if that makes sense. Pleasant to speak to, not too clinical and had a friendly tone to her voice.

So I made notes (shocking) in my little book about each question asked so that anyone reading this waiting for their triage appointment can have a rough guideline to take the anxiety off a little. Each lead to other questions so this will not be a comprehensive list.

  • When did you first notice something was wrong?
    Holy shit she went straight in there with the bullet to the head! πŸ˜”πŸ”«
    As many of you will know already it took a long time for us to openly admit something was wrong with our child and it wasn’t until William was after 2 that we started writing about him publicly on Facebook to share our journey. It wasn’t that we were ashamed, we were frightened, not only thing things William would struggle with but of the stigma that comes with having a learning disability.
  • Who is in your household?
  • Is Dave Williams dad?
    I had to kick Dave to make sure he didn’t pull his usual not funny trick of saying ‘as far as I’m aware’ or ‘Yes or the milkman’s’ Honestly these jokes are almost as old as the one were he says he’s shagging my sister πŸ™„
  • Do you both work? Who’s the main breadwinner? What does he do for a living?
    Insert idle chit chat here about how the current pandemic is effecting him at work.
  • Has there been any history of trauma or domestic violence that may have impacted William?
    I had just kick Dave but that doesn’t count… No of course not πŸ˜‡
  • Is there a history of autism in our family?
  • Is there a history of mental health issues?
    I explained about my lengthy battle with postnatal depression and anxiety and the medication I had been on and for how long. I’m not ashamed of it, in fact i’m proud. Although it took me a long time to seek help, I eventually did and came out the other side. Some people don’t.
  • What other agencies are involved with William?
    We then discussed things his paediatrician had put forward; blood testing and genetics testing and our next appointment.
    We discussed Lisa who liaises with the nursery in regards to his education.
  • Are social services involved?
    Eh? No!
  • What was my pregnancy like?
    We discussed how high risk it was, the lengthy induction, having an assisted labour, gestational diabetes, being in hospital longer than expected.
  • Is William on any medication?
  • Did you bond with William?
    Yes. No. Maybe? He didn’t really bond with me? He’s indifferent.
  • What was he like in meeting his milestones?
    Insert big head joke here and not sitting up until 10 months.
  • What were his first words? 🀐
  • What does him playing look like?
  • Does he make eye contact? If he does can he maintain it or is it fleeting?
  • Does he respond to his own name?
  • Does he indicate his emotions or pain with facial expressions? Let me tell you something… Justin Bonomo and Erik Seidel are amateurs compared to William when it comes to having a good poker face. I’ve let me nerd slip out again there. Justin and Erik are two of the most famous poker players in the world.
  • How does he behave with other kids at nursery?
  • Are there any children outside of nursery that he engages with?
  • What kind of support does he receive at nursery?
  • Am I OK to contact the nursery?
  • Does William recognise other peoples emotions?
  • What are Williams meltdowns like?
    Like a tornado ripping through my living room.
    Like stepping into the ring with Conor Mcgregor.
    Like trying to hold onto an oiled up contortionist.
  • What sensory issues does William suffer with?
  • What are the main indicators he is about to have a meltdown?
  • What are his eating habits like other than during meltdowns?
  • Does he show any signs of anxiety?
  • What is his sleep pattern like?
  • Are there any things he cant do in regards to his motor skills?
    Jump. Hop. Point. Wave. Clap.
  • What is he like with danger? or strangers?
    No sense of danger or recognition between familiar adults and strangers.
    That was it!
    Interrogation over.

She was happy that William had been referred to the right place and he will remain on the waiting list πŸŽ‰πŸŽ‰πŸŽ‰
Relief swept over me. Tears ran down my face.

What happens next?

A letter confirming this will be sent to all parties involved.
A team of specialised autism nurses will be on hand during our wait to answer any questions we may have.

The wait is currently between 2 and 2 and a half years. We will not be contacted until William is at the top of the list.
To put things into number which you know I enjoy, there are over 900 people in front of him in Hull alone. In order to them to bring their waiting time down they must assess a minimum of 8 people per week and I know a company called Healios have stepped in to alleviate some of the pressure but they can’t carry out all the assessments as they conduct theirs via video link and not all of those waiting would benefit from such an assessment.
The actual assessment is called ADOS (Autism Diagnostic Observation Schedule) and it is currently the standardised diagnostic tool for diagnosing ASD.
The ADOS process involves observations under controlled circumstances that other professionals are able to replicate.
Only trained professionals can administer the ADOS diagnostic screening, but it eliminates some of the differences of opinion otherwise possible when two different experts provide a diagnosis without following the same consensus in regards to what they should be looking for. Using the one set of clear guideline minimises the margin for misdiagnosis and errors.

When it is Williams turn for his assessment he will already be finishing his first term of his second year at school πŸ“š That is if they continue seeing people at their current rate.


November/December 2022 – What a brilliant Christmas gift that will be for us that year πŸŽ„πŸŽ

Posted in Appointments, PCP & TAF Meetings

The ‘TAF’ Meeting Part 2

Tuesday 19th November 2019… We were going into today’s meeting much more prepared than its predecessor. We went armed with my trusty notebook full of comments, questions and observations.

‘TAF’ meetings – Team around family meetings.
They basically do as they say on the tin. Its a meeting in which the agencies involved in Williams development get together with his family to make sure we are all on the same page in order to help William as he gets older and to make sure we are all doing what is best for him.

Today’s guest appearances came from a member of the Early Years Development Team from Hull City Council. I never remember her name but she is lovely so I will make sure I find out. Sarah, our Health Visitor and Val, his key worker in nursery who specializes in SEN (special educational needs)

As always there is always good and bad news whenever we have an update…

Unfortunately all parties agreed that there had been little to no progress in regards to Williams development since he was initially granted level 2 funding. This was very disheartening even though we agreed with it πŸ’”
He has now been awarded Level 1 funding which means Val will be with him all the time at nursery. This unfortunately means he won’t be spending any time with Linda which may cause a slight regression in his behaviour due to their bond but will be for the best as she isn’t SEN trained and can’t do some of things with him that Val can.

We touched on the subject of schooling 🏫 and whether he would attended a special school, a standard mainstream school or a mainstream school with special needs provisions. Although it is too early to make a decision we are putting steps in place to ensure that no matter where he enrolls he has all the support he needs.
This includes setting up a PCP (person centered planning meeting) which is to help plan certain aspects of Williams future. Starting the EHCP (educational health and care plan) process. This is needed to be put in place to ensure William would be granted a place at whichever school would be best for him regardless of catchment areas.
A referral is also being sent to the Outreach Team that deal with Ganton & Tweendykes special schools who can help support him both at nursery and at home🏑

And now for the bad…😒

Williams referral to the Autism Panel (this is a bit like the X-Factor panel but not as shit) mentioned in my previous post was stuck in limbo. Based on the Paediatricians letter he expected our GP to do the referral. We had called them the day after the letter was sent and they had confirmed it was received and they would process it.
BUT… It turns out that GP’s can no longer submit referrals of this kind and it can only be done by…

  • A Paediatrician (WTF! why didn’t he do it?)
  • A speech and language therapist (We are still waiting⌚ apparently we are near the top of the list, have been allocated a therapist but it won’t be until next year)
  • The Nursery

Sarah said as this has recently just changed she will speak with our GP, confirm what is happening and if nothing was in place she would call the nursery manager and ask her to put the referral though. She promised to let us know later that day.

We knew from an early age that William was struggling developmentally but today it was confirmed exactly how much of a delay there was. His current development is within the age group of 0 – 11 months. This hit us like a bus 🚌 as neither of us imagined he was that far behind.
This doesn’t mean he can’t catch up to his real age but the wider the gap the more difficult things will become for him but we can only take each day as it comes.

Sarah called later that day as promised showing us yet again what a superstar she is ✨
No referral was in place! She advised she wasn’t going to ask the nursery to do it… My heart sank until she explained why.
She has asked our GP to refer us back to a paediatrician who can assess William to rule out any other issues and make the referral to the ASD (autism spectrum disorder) Panel. This would prevent any further delays down the line should he undertake a Triage (this is an assessment to see if he actually needs to go to the ASD Panel at all) and they ask for this then delays his diagnosis even further (No fucking wonder there is a 2 – 3 year wait!😑)
She will chase this up for us in a few weeks if we haven’t heard anything. I honestly couldn’t praise Sarah enough for all the support she gives us.

When Dave and I left the meeting we agreed not to talk about it until we got home to let it all sink in. We don’t drive so it was a very silent and uncomfortable bus ride.
Our discussion was so positive about what we can do for him in the future, how we will handle any obstacles and how much we love him.

But Dave wasn’t feeling positive and he was trying to be strong for me. He was devastated and broke down.
‘I just want him to be happy’ he cried.
And then I cried. Not because I thought William was going to be unhappy but because Dave was crying and he had all the same fears as me.
‘He is happy and we will keep him that way. Today’s meeting doesn’t change that
Dave has seen the same videos you guys probably have of Autistic children have meltdown in the middle of things that most people take for granted like getting a haircut (we have cut Williams hair may times including once when I was using the clippers and the guard fell off… we had a bald child for a while), going food shopping or a change to their routine etc.

We will cope with these things if they arise. We may not cope well but together we will do it.