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 Autism Assessment, Emotions

To Diagnose or not to diagnose?

April is around the corner and with the obligatory showers also comes Autism Awareness month and I thought it was a good opportunity to discuss pros and cons of having our children ‘labelled’ with an ASD.

I had a conversation recently about someone who sees it as a burden and doesn’t want their child labelling as they feel it could reduce their child’s ability to get a job in the future and have a worthwhile career.

I did a little research on labelling children and there is a phenomenon called The Pygmalion Effect. Pygmalion was a cypriot sculptor who fell in love with a statue he carved. The movie My Fair Lady is loosely based upon the original story. The Pygmalion Effect states that high expectations lead to better performance and low expectations lead to worse, both effects leading to a self fulfilling prophecy. The kids of either of the expectations internalize their positive labels and succeed accordingly; a similar process works in the opposite direction in the case of low expectations. The idea behind the Pygmalion effect is that increasing the teachers/employers expectation of the child’s performance will result in better performance from said child.

I think my personal Pygmalion Effect synopsis is much more straightforward. Pygmalion fell in love with an idea. His idea of perfection in which he made himself but it as not real and longed for it to be real so much that he asked one of the gods to bring his statue to life as nothing could compare to his love for it. This resonates with us as a family and probably with any other parents who initially struggled to come to terms with the thoughts that their child wasn’t as they envisioned but that vision wasn’t real, it was a dream and even when Pygmalion carved his dream into a sculpture so he could see it, it still wasn’t real but nothing he had could compare to this idea of perfection. We all want the best for our children and want them to have every opportunity to reach their own potential. We might worry that a diagnosis runs the risk of exclusion, bullying or even well-intentioned fuss being shown towards them. Bullying and exclusion however are problems for anyone with or without a diagnosis however with more openness and education both formal in school settings and informal like our blog and the many others out there about Autism people will begin to understand and help people see the child and not the label. I’m not saying that it’s not a difficult battle but I want to be on the right side of it. The side saying ‘Its ok to be Autistic’, ‘Its ok to different’ because looking at the people around you are we all really the same on a neurological level? No.

Will Autism prevent my child finding a job or more importantly a career? Maybe. But the more understand there is on this subject the better th chances will be.
As of 2016 just 16% of Autistic adults were in full time employment and an additional 16% in some form of paid work, at this point the National Autism Society were reaching out to companies to become Autism Friendly Employers. David Cameron (The pig guyπŸ– incase you can’t remember. Who could forget?) said by 2020 they aimed to increase this, doubling it to 64% of Autistic adults in paid employment and narrow the gap but the government have yet to publish any findings, in fact I have struggled to find any statistics since the initial report in 2016 by NAS.
In 2019 Minister of State for disabled people; Justin Tomlinson said they are now going to ‘look at’ measuring the statistics of the employment gap… If they have not yet started monitoring the statistic how did they expect in to improve 3 years after Cameron’s promise? We are now in 2020 and have no idea if things have improved or if any of the schemes regarding getting Autistic people into work have been working!

There was due to be an Autism at work summit in London on 4th June this year but due to the current situation it has been postponed… God Damn you COVID-19 😷
I’m really hoping it gets rescheduled as I would love to hear about initiatives to help people with Autism in their future and it would be something I would love to get involved in and hopefully bring to my own workplace.

I am very pro diagnosis. It is so difficult to get children with a diagnosis the correct support and almost impossible for those without it.
How can any parent purposely stop their child getting the support they need at such a vulnerable age to protect something they may not need protecting?
We all know William has a developmental delay that may or may not be related to his autism; so lets ‘ignore’ that just for this hypothetical scenario… So William is starting mainstream primary school because without the right steps in place he doesn’t have a cat in hells chance at a special school place or the special provisions available in some mainstream schools. He can’t focus in class as they aren’t teaching him in an appropriate way to he needs so he isn’t performing in class and is labelled as a “naughty” child because he is lashing out in frustration and has hit someone and bitten the teacher when they tried to show him how to hold his pen. Other children don’t want to play with him as he wont play the traditional way and won’t have the immediate guidance he needs. He is sad as he is frustrated and segregated from his class. He goes to high school but because he wasn’t supported enough to be able to focus on sitting exams he is automatically placed in the lowest settings but he still struggles to perform. He won’t wear his school uniform because its itchy or the buttons are in the wrong places or simply because he doesn’t like the colour. They send him home to change but he wont. He is excluded because he keeps going to school in the wrong uniform or when in the right uniform removes items of clothing in public because he doesn’t understand it’s not appropriate. The school doesn’t want him to sit his GCSE’s as there is no way he will get any grades and he will bring down the schools averages but he also doesn’t want to sit them; he doesn’t want to be the big musty smelling hall in silence for all that time when he hasn’t learnt what in front of him in the last 5 years. He’s just learnt that he is alone and no one really understands him.
He can’t go to college as he doesn’t have GCSEs and they won’t let him resit because hasn’t learnt the subjects. What chance of a career does he have now? but with a diagnosis there is a 16% chance but its a much bigger chance than without one?

Use this box below to let me know your opinion on diagnosis – its anonymous so don’t worry about being politically correct in order to explain your opinion as I will be doing a follow up to this post.

as always please subscribe πŸ™‚

Posted in Appointments, Autism Assessment

The Day

Today was THE DAY!!! well almost…
William’s referral to the ASD panel will be put through by his Speech and Language therapist. We need to sign our consent on the 10th February when she goes to observe him at nursery and then it’s done. Then we wait for the confirmation letter and the countdown begins ⏱

Today, like most important days didn’t start well. Anxiety at peak and the woman from speech and language hasn’t turned up and it was almost 30 minutes passed our home visit time.

Just like my last Tesco order she had gone to our old address 🀣 She called and was super apologetic but her paper file hadn’t been updated but she was on her way.
So Sally (writing her name so I remember it in the future) arrived and jumped in straight away, As soon as she sat down William went to her and grabbed her hands to play ’round and round the garden’ which was a positive sign as he doesn’t often take to new people in that way especially when he’s been poorly. Sunday morning wake up call was to a gunky case of conjunctivitis and a bust lip? Not sure how that happened but he didn’t wake us up when it did.

She asked a lot of the same questions as the Neurodevelopmental Paediatrician did but had a warm way about her that made them less judgemental and abrupt. In between questions she was playing with William as he wouldn’t leave her alone.

This wasn’t the type of appointment in which someone walks in and goes ‘right then Mr & Mrs Buckley, William will definitely start talking soon!’
This was the beginning of a very long process. There is no magic wand to wave to poof things into happening or to speed up William’s development and we’re ok with that as long as things are moving in the right direction and that he is happy.

Sally is sending us on a course ran by 2 speech and language specialists who will help up know how to appropriately encourage William to make more eye contact. She mentioned that usually his SEN worker would go along but believes Val has already had it based on the work she has done with William so far however will send her too if needed. There is a few month waiting list for this so it’s another letter we will be waiting to hit the doormat but we are good with that as we know its coming.
she will the check back in with us to see what the next steps are in developing his communication whether it’s BSL, Makaton on the Pecs system. The goal isn’t necessary to get William to start speaking but to enable him to communicate with us in a way he is comfortable with with which make things easier for us all in the long run.

Don’t get me wrong I would kill to have William call me ‘Mummy’ or tell me he loves me but he already does that in his own ways. Like on the rare occasion when he’s tired and comes to cuddle me and moves my hand so I know he wants me to stroke his hair.

2020-02-10T13:15:00

  days

  hours  minutes  seconds

until

It’s Officially The Day

William has several appointments and assessments in the pipeline including an evaluation by IPass who are going to assess him movement to rule out any physical disabilities.
The next TAF meeting is in February so hopefully this will get the ball rolling further in regards to his education and an EHCP plan.

Big progress with Williams fine motor skills and his hand eye coordination and it’s all happened in such a short time.
He has now done the following for the first times…

* slotted a disc into a small hole
* used a fork to scoop, stab and feed
* built a lego tower with me
* scribbled independently on his whiteboard ➑ Future Picasso according to his Nanna

Posted in Appointments, Autism Assessment

If you’re not on the list, you’re not coming in!

Today was THE day! Everyone said it was… everyone said it was THE appointment to get him on the ASD Panel waiting list. We were referred to the neurodevelopmental paediatrician because she would be the one to put him on that list…
I should have known better, why would this be THE day. A miserable cold day in January when none of the previous ‘THE day’ appointments had been the actual day.

Yesterday we had a tiny step for babykind but a massive leap for WilliamπŸ‘¨πŸ»β€πŸš€ He has been using a fork! 🍴 He had actually been scooping and stabbing his own food and successfully getting it in his mouth. This amazing coordination is a huge achievement for him. He hasn’t reenacted this at home yet but he has a small toy that involves putting a disc into a slot and he has also master that. His current favourite game is putting the disc in and passing me it to fire out for him to do it all again… so basically I spend a good portion of my evenings playing fetch with my toddler 😏
His other favourite pastime is holding me hostage in his room and forcing me to play round and round the garden until I can escape but we are currently on game number 1,00000003 and he still laughs before I even touch his hand which means I will keep going.

His bedtime routine hasn’t improved although our morning one has. His Nanna bought him some adorable all in ones to sleep in which means we don’t have to fully disinfect his room every morning. Don’t get me wrong he still tries to take his pants off at every opportunity… he is just like his dad in that way 😜

He isn’t lashing out as much as he has done in the past but his routine is now settled again so i am hoping it stays that way if he encounters changes. He does need his nails cutting soon so if any of you see me with a bloody face then you can probably guess why.

Today didn’t start particularly well, both David and William had to get up much earlier than usual and neither of them handled it well. I basically hand to turn into Gny. Sgt. Hartman to get them sorted and out of the house! I’m not exactly pleasant when i’m stressed.

Traffic was horrendous and we stayed in the same spot on holderness road for 15 minutes and then to cap it off when we get on our second bus we ended up miles away because the shitting ‘movit’ app crashed. THEN google maps told us to go in the wrong direction! Needless to say both me and Dave were very stressed and took it out on each other. He shouted at me, I shouted at him and then we didn’t speak…

Arriving late is never the impression I want to give so I was very on edge when we finally arrived. The paediatrician whose name I can’t remember didn’t come across well, I don’t know if its because I was on edge but she was very condescending and told Dave off for fidgeting because it was distracting her.

She tipped out some toys for William to play with and grilled us about family history and when William reached his milestones. I couldn’t remember when he first smiled and I felt like a terrible mum. I remembered he was 10 months when he first sat up and 21 months when he was walking independently but I could not for the life of me remember when he first smiled. I remember the feeling and the fact I cried when he first looked at me and smiled but not when.
She asked about our family histories and if any one had any history of ASD and there is one person in each side of the family. Both boys and both in Williams generation. Both on our Fathers sides.

How is his medical history, how many times has he been in hospital? How many times has he had antibiotics? What caused his massive allergic reaction? what are his bowel movements like? apparently sluggish bowels are often found in children with autism.
Does he have any birthmarks? What was he like as a baby? Was I on medication when pregnant? Other than GD did I have any issues? Did I breastfeed? How was the labour? Well it was fucking hard! it was definitely no walk in the park.

Then she asked about his sleep patterns and we explained how well he slept really well until he turned two. How is his diet? well… when we can get him to eat he will eat anything and everything, even stuff he wont touch with his hands will go into his mouth. His poops often come out gift wrapped due to the amount of paper he eats. Its not worth risking a finger to get it out of his mouth. πŸ‘†πŸ»

Where do I work? What do I do? Where does Dave work? what does his job entail? How many hours do we work? Who lives in our house? How does William interact with the pets? How is his recognition with people? This one is always a touchy subject as he doesn’t really behave differently towards anyone. I explained we could have walked out that room and left him with her and he wouldn’t be any different. On occasion he will show immediate delight when he sees his Big Nanna or my dad but that is it. She explained how it is fairly common for children with autism to fail to bond with people and parents will often struggle due to their feelings not been returned… well this really hit home and I started crying.
I love William with every ounce of my being but it is disheartening actually more like devastating when he doesn’t care for me in the same way. If I am holding him when he is upset he will reach for hs dad and when his dad is holding him and i got to kiss him he will pull away from away. How will he know I love him if he rarely lets me show it. When we are alone and i’m the only option he will come and snuggle with me but that isn’t because I am his Mum, it’s because I am there.

She listened to his heartbeat and all was fine, took his weight and height and she also flexed his joints, checked out his hands, feet and his birthmark. Is his skin dry? No… I had forgotten about his chicken skin. I always forget about it because to me it is normal as I had it.
Basically chicken skin is a condition called Keratosis Pilaris, it’s basically a build up of keratin in the hair follicles that causes small bumps on the skin. It is hereditary as a few of the women in my family have had it so to us it’s just the norm.

She asked us to strip him off and get him to walk the length of the corridor outside. He did it gingerly, the same way he walks anywhere. She asked us to try and get him to run but he doesn’t run. He never has… we tried to make it a game but he didn’t run just waddled a bit faster. A bit like my version of running πŸ˜‚ She did speak with us about his walking abilities and how hard things will get when he no longer fits in a stroller and where to look for help. Obviously this wasn’t what we wanted to hear as we hadn’t even thought about the fact he may not get better with his walking so it was a bit of a blow.

She agreed he has a severe developmental delay and the 9-11 months bracket he was put in before was correct. That is 2 whole years behind where he should be. He will be 3 in March which seems crazy as I feel like it was only yesterday we brought him home from the hospital. Although she also agrees that he has severe autism she will not be the one to put him on the ASD waiting list. She wants the speech and language therapist to it. What the actual fuck!!! So let’s just recap who we now know wont, haven’t or cant do it…
* Ourselves
* The Nursery
* His Key Worker
* His GP
* His Health Visitor
* The woman from the Early Years Team
* The Paediatrician from A&E
* The Community Nursing Team
* The Neurodevelopmental Paediatrician
They all agree that it is highly likely he is on the spectrum but nothing has actually been done with that knowledge. If the S&L therapist doesn’t do it then I do know who will and just in case anyone spotted me crying hysterically in the middle of anlaby road this is why.
The waiting list according to other parents waiting time for first contact is currently 867 days. That is 2 years, 4 months and 15 days. 28 and a half months. 124 weeks. 20,808 hours. 1,248,480 minutes or 74,908,800 seconds.
I can’t imagine this wait getting any smaller and the longer it takes to get us on it, the longer it takes to guarantee William the support he needs.

Once again one referral has lead to another and she wants to refer William for blood tests to rule out any underlying issue as autism can often be the symptom of something much bigger. She is also requesting genetic testing.
A genetic test can not diagnose autism or detect it early but there are 100 genes that have clear links to autism but no one mutated gene can cause it. For example there is a clear link between children missing the chromosome called 16p11.2 and autism however one 1 in 4 of those missing this have autism.
This test can give us a reason as to why him? and I know it’s selfish but I think as parents we need to know its not our fault and that we haven’t caused it somehow.

So no answers were given today and today was not THE day we get on the waiting list. We are back in three months and hopefully will feel like more parts of our journey have been completed.

On a separate note we received a message from the nursery today about an exciting new room they are creating. A sensory room! Children with needs like William’s will be able to spend their time in a special environment tailored to them. William’s Key worker Val will be based in there permanently and as William needs 100% support so will he. I am so pleased with this development. They are a fantastic nursery and i’m very lucky we chose them to care for William.

I started writing this at 7pm and it is currently 1:15 in the morning. William has been throwing up since about 8pm. Terrified me the first time as I thought he was choking on it. He only ever been sick like this once before and it was over a year go.
Currently I have a pile of sick covered clothes, cushions and blankets (both mine and his) that need to go in the wash, his pram and travel cot (I didn’t want him in his room alone if he was sick again) sat drying next to the radiator and William asleep on the sofa behind me with a temperature and a towel… Just in case.