Posted in Emotions

It’s in the DNA

Males inherit the X chromosome from their mothers, the Y from their fathers.

Williams results from the genetics testing came today and its a bit of a mouthful but… there was a variation from the normal pattern wirh interstitial hemixygous copy number gain Xp22.33. The test states there is additional genetic material.

Chromosome 22 is the second smallest human chromosome (21 is the smallest) including more than 51 million DNA sectors (they’re in pairs) and represent between 1.5 and 2% of the total DNA in cells.

There is no defined link between this and autism but there are a few case studies referring to it and those with learning difficulties but not enough research has been carried out. Its is classed medically as having uncertain clinical significance.

If it has come back as nothing detected that would have been shit but manageable.

If something would have been detected on his Y chromosome I wouldn’t have blamed Dave but I am sat here now blaming myself. After all the X chromosome came from me.

Have I done this to him? To us? The paediatrician will be booking in a consultation to discuss the results in more detail and establish if further investigations are needed but now I’m terrified of what they will say… will further investigation point the finger at me even more?

I just feel like I’m back at the beginning of our journey, like all the progress we’ve made in our acceptance and grieving over a child we thought we would have hasn’t mattered and I’m back to looking at him and crying because this could all be down to me.

Posted in Brief updates

In a GAP

I think I have been pretty vocal about how all appointments and referral seem to go round for us but I held out hope (in vain) for our most recent one, to the nappy service ๐Ÿšผ

Let me put a little context to this. William is 3 years old but developmentally under a year. Due to his physical age he is the highest available size of nappies. He is not currently able to be potty trained as he isn’t aware of when he needs to go toilet or if he is he is unable to communicate this as of yet.

William also suffers from a lazy bowel and it doesn’t always function and it should so mild laxatives are often needed to relieve him of discomfort as he can go over a week before naturally being able to pass a stool. As you can imagine the build up of waiting to go natural or the explosion of laxatives puts any nappy to the test but imagine this happening when there isn’t any that will fit him ๐Ÿคข

William also displays sensory seeking behaviors and unfortunately this involves a fascination with his own faeces. The will result in him smearing the contents of his nappy over himself and his surroundings and on occasion he has put it in his mouth.

On a night we have had to put him in a onesie to stop him taking his clothes off and removing his nappy. Unfortunately for us the little Houdini has now learnt to remove a onesie as you can see below… thankfully he was busted in time and put back into his clothing jail.

The look of pure joy that he is naked and put of his awful onesie

We were worried as he gets bigger what will do and we were told that there is a nappy service in our area which provides children with special needs nappies in bigger sizes which is amazing. However nothing is ever that simple.

Let me start from the beginning…

  1. Our GP sent a referral to the community nursing team
  2. The community nursing team rejected this as he is under 4
    • NO ONE NOTIFIED US UNTIL WE CHASED THE REFERRAL
  3. Our GP sent a referral to paediatric medicine
  4. The sent it back to the GP with advice to refer to community nurses or the learning disability team
    • NO ONE NOTIFIED US AND OUR GP CLOSED THE REFERRAL
  5. I chase the paediatric medicine team who told us what they had done
  6. I call the GP and they tell me to call the community nursing team
  7. I call them and they only know about the original referral and won’t accept another one as he is still under 4
  8. I call the GP and have to tell them exactly what the paediatric medicine team have told me
    • SUDDENLY NOW I HAVE TOLD THEM WHAT HAS BEEN SAID THEY CAN SEE IT ON THEIR SYSTEM
  9. They can not help as the person who deals with referral is off (I don’t think they’ve ever been in the office when I have called) but a manager of the surgery will call me back
  10. Kerry calls me and has no idea why she is calling me. She thinks it’s regarding his autism assessment.
    • I HAVE TO REPEAT THE FULL CYCLE AGAIN WHILST SHE REPEATEDLY TELLS ME SHE DOESN’T KNOW WHATS HAPPENED
  11. She is going to call our health visitor and William’s own paediatrician for help and call me back
  12. She calls back, she has left word for the health visitor but doesn’t know if she can help. She has called CAMHS (children and adult mental health services) and they can not help. She has called learning disabilities team and they can not help and she doesn’t know what to do.
    • WELL KAREN (SHE IS NOW A KAREN, I HAVE DECIDED) NEITHER DO I AND IT’S NOT MY JOB TO KNOW!
  13. She will send me some links to places that can help.
    • DO YOU KNOW WHAT SHE SENT ME… A LINK TO A CHARITY SHOP AND A SITE TO SUPPORT ADULTS WITH AUTISM. SO FUCKING HELPFUL!

I found it hard not to cry or be angry whilst on the phone with Kerry/Karen and I’m sure she could hear the break in my voice when I asked her ‘what are we supposed to do now?’

And that is the question, what do we do now?

We can’t be the first parents who have come across this, we can’t be the first to be in this situation. What happens when you fall into the gap? Do we just stay there for 8 months and have a bare bottomed child or tie a carrier bag to his waist?

If I failed to change and clean his bum for him when he was physically under a year old then I would have been classed as neglectful but what about now? He isnt physically under year but developmentally he is still in the same place. Am I being neglectful? Or are the services in place being neglectful by allowing this?

Posted in Emotions

Understanding and accepting

Before acceptance must come understanding.

People often struggle to differentiate between a child with autism and a child who is being naughty.

As a parent who suffers with anxiety it is very difficult to go to certain places and deal with other people who don’t know William like we do.

Something as simple as a journey on a bus can set me into a tailspin, a small journey can lead to an argument due to the fact other passengers look at William as see what they deem as an ablebodied 3 year old in stroller taking up a space they feel someone else needs more. Not all disabilities are visible and what give you the right to assume!

A trip to a supermarket can lead to a full meltdown due to the hustle and bustle of different people, a different environment, bright lights and loud noises. One the rare occasions he will walk, he will often end up laid on floor and go floppy because he can’t handle the stimulation and lack of familiar surroundings and comfort.
This is not a toddler having a tantrum because he can’t get sweets or doesn’t want to walk, its because he is in pain.

When we go to a restaurant, cafe or bar he will beeline for any food he can see, we will stop him before he takes it but it can lead to awkward conversations, dirty looks and whispered remarks.
This isn’t because he isn’t fed at home or because he is rude. This is because food is such a high motivator for him and that the fact it doesn’t belong to him doesn’t even register.

I shouldn’t have to apologise for my son for being himself but I find it becomes a more frequent occurrence as time goes on. I shouldn’t have to explain why he is the way he is, there should be a wider understanding of the autism spectrum leading to acceptance.

I truly believe that autism awareness and understanding should be educated in schools so that future generations don’t make the same mistakes and assumptions.
There are no definitive figures of those with autism as no record or register is kept but based on recent surveys 1 out of 100 has autism.


Think of the children in your child’s year at school, think of the children who you went to school with. I wish I had been more aware, more educated and a better person.

I want that for the future, for children like William and for parents like us who often feel we should apologise on behalf of our son when maybe, just maybe they should be apologising to us for their small mindedness.

Much love, The Buckley’s Xxx

Posted in Appointments, autism and covid19

PCP Meeting… Covid-19 edition

Just a little reminder of how happy Big nan is now she gets to see William xx

We take the same notebook to every single meeting, it wasn’t an expensive book; in fact I think it was a freebie from a company my work engages with on twitter but this random book has become a symbol for us, a record and a reference guide. It has been to every meeting without fail and contains scribble and tears (maybe snot too๐Ÿคฎ) We need to start looking for a replacement as its almost time to retire this one, and by retire I mean put into storage in case we need it for reference in the future. I’ve bought loads of new notebooks but non of them are quite right. I know it may sound silly as it’s just a pretty ordinary notebook but it symbolizes our journey.


I’m not sure if everyone’s experience with PCP meetings are like ours but it wasn’t what we expected. We were sent a copy of William’s support plan yesterday to prepare us for today and were asked to look through it and focus specifically on his areas of need.
Both Dave and myself sat down and picked apart this plan and what other professionals had written either agreeing, amending or adding & removing and making notes in our trusty blue notebook ready to question parts we didn’t understand or needed clarification.
The support plan is twenty-six pages long and that is with a small font!

The call was at 3pm and I had volunteered to work until shortly before so that I didn’t sit dwelling on it all day, luckily Dave wasn’t back at work until this evening so he was able to look after William.
Meetings are very different in the current climate so instead of having to travel to the nursery we had to, usually in silence with a few passive aggressive comments we had to gather round my desk and tune in to a Microsoft teams meeting (I spend my entire working day on teams ๐Ÿ™„)
We expected a woman from our school of choice to attend the meeting but she was busy which is understandable but disappointing. More concerning is that our nursery representative couldn’t figure out how to work Teams.
We expected to go through the points raised on the support plan and be able to put our input in whilst on the call but this was not the case, Our SENCO spoke through was each section of the plan and told us that until I next meeting we were to input our thought on Williams strengths and needs focusing on his worst days because that would be when he needs the most support.
There were parts that weren’t relevant to William which had confused us last night and should have been deleted but we got some clarification which was good.

I must say the SENCO Lisa is fab, she answered numerous neurotic emails from me during lockdown and told me and the nursery (who was on Lisa’s mobile on speaking in the background) what needed to be written or included.

I think the main focus of this meeting was to discuss what will happen in the run up, during and after our next meeting. This disappointed Dave as I think he expected more from the meeting in general and didn’t take as much from it as I did.

SMART Targets have been set for William and what they are aiming for him to achieve within the next four years.

  • To be able to use objects, images and timetables as a point of reference in order to follow a routine.
    (They believe this one should be achievable by the end of the year depending on how much William regresses when he goes back to nursery)
  • To independently engage with a wider range of activities and toys.
  • Communicate my wants and needs to familiar people.
  • Explore a range of unfamiliar environments and activities independently in various ways.

Its great to see they have targets and what was very impressive is the steps they already had in place to ensure he is on his way to these, no matter how slowly.

I’m not sure if we have mention previously but William has Global Developmental Delay (GDD) and currently William is classed as being in the 0 – 11 months age bracket. He has developed in almost every area barring one into the 8 – 20 months bracket. The one that he is struggling with revolves around language and communication, hopefully he will progress when he goes back to nursery so he will officially be in the higher bracket. I said to Debs tonight that’s its really daft as it is just label to put on him but it feels really important for us to have it, to know where he is on the scale and that he has moved from one to the other.

The next step is for us to add to this pan and submit it before the end of next month in time for our next meeting which is 21st September (Happy Birthday Me ๐ŸŽˆ)
This next meeting will be to finalise the support plan to submit for EHCP assessment which will take 20 weeks from submittal to be confirmed. We should get a draft back after 16 weeks to approve or edit.

Our intention to send William to a specialised school has been documented and admissions are fully aware that that is our intention. This doesn’t guarantee him a space but at least he is on their radar which can only be a good thing ready for the application process later in the year.

Posted in autism and covid19, Autism In The News

EHCP Announcement part 2

Remember when I last posted about the ‘temporary’ suspension to EHCP’s?
Remember how I worried that it wouldn’t temporary?

I hate to say I told you so but the suspension has now been extended further until 30th June… This could be extended even further closer to the time.


In case you are unaware an EHCP is an Education, Health & Care Plan which is a legally binding document that is written by the Local Authority (with parental and other professionals help) regarding a childโ€™s additional educational and care needs. The plan outlines the type of support or intervention that the child will receive to ensure that their needs are being met.

Due to the coronavirus pandemic I did understand why this had been placed on hold due to the changes which schools were facing in regards to social distancing and how many staff and pupils in a room etc however June 1st is the day they have been pushing for kids to go back to school but with the latest announcement it seems they didn’t mean all kids, they didn’t mean the kids that need additional support.

“Make no mistake, I want the UK to be the best place in the world to educate your child and make the most of peopleโ€™s talents.

Gavin Williamson, Education Secretary

This was taken from a speech Mr Williamson gave about his plans for post-Brexit education. He focus on improving technical education and welcoming international students, what Gavin missed out in his little speech was education for the already under funded and overlooked SEN children.

The new announcement is disappointing but not surprising.

Instead of Mr Williams sharing any of this to his twitter account instead he shared this…

‘Hello NSPCC? I would like to report countrywide neglect of those with special educational needs.’

I suppose we will have to wait until the end of June to see if this suspension of pivotal EHCPs is lifted, I for one will not be holding my breath.

Posted in Emotions

I F***ing hate you

Its nights like these I really wish autism was a physical being so I could kick the shit out of it. I fucking hate you autism you son of a bitch!!!

Its 11:30pm and William is still awake. He is calm and comfortable watching TV in his room. Before anyone jumps on the too young to have a tv in his room please remember that the only thing that can soothe William is the wonderful invention that is BabyTV and even then that’s only works some of the time. Could you imagine my neighbours during his frequent 4am screaming fits without it?

A little while ago it was a completely different story. William had spent the last half an hour or more hitting himself. Believe me it felt like a fucking lifetime. He doesn’t have a massive amount of strength in his arms so one little slap wouldn’t necessarily hurt anyone but he continuously slaps his stomach or legs with both hands until they are red. It’s really difficult to watch and if I try to restrain him he will lash out and bite me or become even more upset. And believe me when I say this he has the strength of a pitbull in those jaws.

Its these moments in which I feel like a huge failure as a mother.

I have tried everything to pull him out of these self harming states but nothing works so I tend hover in the hall or in his room and try to distract him but often just watch him and cry.

It makes me feel like an absolute failure as a mother. I’m supposed to protect him when someone hurts him… what am I supposed to do when he hurts himself?

The worst thing about this evenings episode was the reason he was hurting himself, it was something as simple as needing a poo and then the discomfort of needing changing afterwards. This has never been a cause before tonight and he is on medication to help him go but for some reason tonight it was an issue for him.

I need someone to blame. Someone to shout at. I write often about accepting that we are not to blame for William having autism but it was easier when we did think it was us because it was easy to direct hate at ourselves.

Who do I hate now? The diagnosis we still don’t officially have? The genetics that he may have inherited? The fluke that may have caused it? God? I just need something or someone to be mad at! I just need a reason… Why?

Posted in Appointments

Blood Ties

The purpose of literature is to turn blood into ink.

T.S Eliot

I am well aware that the above Eliot quote is not actually a direct quote but it fit nicely with my reason for today’s post. William’s dreaded blood tests.

Back in January we went to see that delightful paediatrician that told Dave off for fidgeting and spoke down to us, not that it bothered me or anything ๐Ÿ˜ก
She told us that she would refer William for some blood tests; two samples needed…
* One to check for anything in his blood that indicates something may be medically wrong with him which means autism is a symptom and not the cause.
* And the other to send for genetics testing; this will confirm our rule out genetic conditions that have or can be passed down.

  • Jan 22nd – Paediatrician

  • March 24th – Lockdown

  • May 18th – Paediatrician

  • May 26th – Blood test

  • June 8th – Blood test

The Paediatrician told us it would be a few weeks until we received a letter so when we were at at TAF meeting at the beginning of February and Sarah told us it wasn’t on his record yet but that wasn’t uncommon we weren’t worried.
BUT THEN… LOCKDOWN HAPPENED! ๐Ÿ”’
Things were still happening and a telephone appointment came through for a different paediatrician ๐Ÿ™Œ it didn’t explain what would be discussed so understandably we were nervous. I’m not sure who called but it wasn’t the first paediatrician or the one mentioned on the letter. It was a gentleman who sounded like robocop with and a strong accent and poor phone signal.

He had called to discuss Williams blood test results ๐Ÿ”ฎ you know the ones he hadn’t had yet!!

โฉโฉโฉ fast forward a few days and I get a call to say we can attend a blood test at Kingswood that afternoon, it wasn’t possible as we don’t drive and it was already 11am and by the time we had gotten 2 buses (baring in mind I haven’t gone out in public for over 60 days) we would have missed the clinic. The next one was 26th May at his paediatrician office so we went for it. Only one person could attend and it was too short notice to post a letter out to us so it was sent in a text form instead. ๐Ÿ“ฑ this contained a link to a letter about what happens at these appointments, let me go through it and tell you how useful this was to a child like William.

  • At the appointment we will talk to your child to explain what will happen and what we need them to do during the procedure. You may wish to bring a favourite toy/book as a distraction.
    This is brilliant! Three years of not been able to communicate the most simple of things like ‘Don’t bite me’, ‘Get down’ or ‘That’s Naughty’ but suddenly they are telling me that they will explain how and why they are about to restrain him and jab at him with a needle. People often ask me when we go out why I haven’t brought any toys for William. There is only one answer… William doesn’t play like other children. He isn’t interested in conventional toys and often retreats into himself in lieu of ‘playing’
  • Depending on their age and size,your child will be asked if they would prefer to sit on their parents/guardians knee. This not only gives comfort and reassurance to your child, but also helps as you are able to hold your child still for the test.
    Again you can ask William what he wants but he wont acknowledge you, If he isn’t sat on Dave’s knee then he would have wandered off from the room and this wouldn’t give William comfort as he only wants to be held on his terms. Imagine trying to restrain a pissed off octopus ๐Ÿ™
  • We have a local anaesthetic spray that we can apply to the skin prior to blood being taken at the appointment. The spray is very cold and will help numb the area.
  • Please inform staff if your child is diabetic or is being investigated for diabetes as this may affect use of this spray
  • If you do not feel that the cold spray is appropriate for your child you may prefer to use a topical numbing cream. As it takes some time to work this will need to be applied before coming to the appointment. You would need to contact your GP for a prescription for this. Talk to your pharmacist about how to use the product correctly before your appointment
  • If requesting or purchasing the topical cream please take a copy of the appointment letter ad this consent form into your GP surgery or pharmacy.
    So these four bullet points all relate to a numbing spray or cream. Should I have needed the topical cream for William then it would have been near on impossible to obtain. Called on a Friday, this link and text not received until late Friday afternoon. Bank holiday Monday. How would we have gotten into doctors? Let alone take our nonexistent letter in to them. No even going to address a consent form since it wasn’t mentioned nor sent.

Dave does all the bad appointments; you know the kind like injections or ones with people who just put your kid on edge and now blood tests, it’s not because I don’t want to take him but because he knows I would fall apart and be useless.

The first thing they asked David for when he arrived was Williams urine sample. You know the one they didn’t ask for. The one that isn’t mentioned in the text we received nor in the bullet points above. ๐Ÿ˜•
The gave Dave a vial to obtain a sample… a sample from a child who relies 100% on nappies, what is he going to go follow him around and wait for him to start weeing everywhere? They are now sending us a pack out in the post to use in his nappy. I think its just a sanitary pad kind of thing as that is what they gave us when he had been admitted to hospital.

The freeze spray was good as it made William giggle like when we put sun cream on him. Whether it numbed the area adequately is a different question to one in which we don’t have the answer for but I hope so.

๐Ÿ’‰Ever heard of a technique called dripping? I hadn’t so when Dave came home and explained that they hadn’t been able to use a needle so they let blood drip down his hand into a vial. He explained his hand was covered in blood… I’m not going to lie I freaked out! Surely this wasn’t an appropriate way to take blood? So i went straight to the internet and I couldn’t find a single thing about it on google. I read 225 pages of the WHO guidelines; best practices in phlebotomy and there was nothing in there either.

Luckily I am a member of a group on Facebook full of parents in my local area who’s children have SEN. Several of them immediately jumped onto my post to my mind at ease.
It is actually a well used method called the ‘Gravity Method’ which is basically where they stab the vein with a needle and let gravity do its thing so that blood drips into the vial until they have a adequately sized sample.

Poorly hands ๐Ÿ˜ฆ

Unfortunately they only managed to fill one vial which is marked for his genetics testing and will be sent to Leeds. This means that poor William has to go through this again in a few weeks time.๐Ÿ’‰
Thankfully they are doing a home visit next time so hopefully in his familiar surroundings he will be more calm and distractable ๐Ÿคž I will just need to make sure I have baked another treat for William once its over since despite the ‘trauma’ it didn’t stop him eating two large pieces of sponge cake.

So now the only thing we can do until the next blood test is to wait for the results of this one vial. Genetics testing recently has been taking less than 12 weeks for results however some parents have waited an extraordinary amount of time so it’s just something else we have to wait for, another count down.

Posted in Causes

Behind the eyes

As many of you may have read previously William has been at the Hull Eye Hospital a few times to check his eyesight.

When children lack eye contact, depth perception and hand eye coordination the word autism doesn’t automatically spring to mind. Doctors and healthcare professionals will try to rule out any other issues and William’s visit to the Eye Hospital was one of his first exploratory check ups.

I want to tell you about the Hull Eye Hospital and how brilliant they have been with us. The staff are all so welcoming and were knowledgeable on how to deal with a child like William, they had a slew of highly engaging toys in order to try and get him to look in the right directions so they could look at his eyes. The waiting room for children however leaves a lot to be desired which is a big reason for my post but we will get to that. They make the most of the area they have and fill it with toys and books and sometimes very noisy children waiting for theirs or their siblings appointments. This atmosphere for children like William isn’t ideal but it is still much better than most places offer.

Hospital Chief Finance Officer, Lee Bond, is going to be doing something that some of us only dream about… well in my case have nightmares about, exercise!!! To be more precise he is planning on running the London Marathon, that’s 26.22 miles. Unless my math is exceptionally wrong (a high possibility) that works out on average if you were to walk it 52,440 steps

His goal is to raise ยฃ10,000. This will enable the opening of a sensory room for children with additional needs attending the Eye Hospital at Hull Royal Infirmary. The marathon is 5 months away (granted it has been postponed as should have been April I believe) they are only 59% towards the target which I’m hopefully can change quickly in the coming months.

For us as his parents any appointment brings upon anxiety and irrational thoughts. ‘What if he’s blind?’ ‘How will he handle wearing glasses?’ Etc etc… however as you are probably aware William’s eyesight is fine although he is due another check up before he can be discharged.If it brings anxiety out in us can you imagine how the child feels? An unknown clinical place, strangers and odd smells, waiting around without your usual security blankets (William’s are currently our metal egg poacher, his changing mat or the dog) Imagine not understanding why you are in this odd place or why people are trying to force eye contact upon you when you don’t want it and never have. Waving pictures your face and holding you still.

A sensory room could lessen the trauma for patients like William. There are multiple types of sensory rooms however the main focus is to help children feel comfortable and calm, explore in a safe environment and engage childrens sense. I think we could all use one in our workplaces or even right now in our ‘home offices’ also known in our house as a baby changing table next to a window.

Please think about any savings you have made whilst we have been on lockdown and try to dig deep to support such a wonderful cause that will help so many! So I implore you, please spare anything you can and use the link below to donate. X

https://uk.virginmoneygiving.com/charity-web/charity/displayCharityCampaignPage.action?charityCampaignUrl=HullEyeHospitalSensoryRoom

Posted in autism and covid19, Autism In The News

EHCP Announcement

Gavin Williamson our current Secretary of State for Education has made a ‘temporary’ amendment in regards to EHCPs. In my basic understanding an EHCP is a document which outlines the needs a child has in regards to their education and the local authority must adhere to it.

This amendment in laments terms basically means that EHCPs are now pretty much null and void. It’s completely understandable that the government would do something like this to protect themselves in such unprecedented times.

Most parents will understand this amendment as it’s not reasonably possible for an EHCP to be followed to the letter when schools are closed to the majority and social distancing needs to be enforced.

As you can imagine, me being the neurotic mess I am immediately panicked… William doesn’t have his in place yet, what if we can’t get one? He can’t get into a school that will meet his needs. He will fall further and further behind… the whirlwind in my mind went on and on ๐ŸŒช

I reached out to Lisa who is the SENCO for early years to find out if and how this would affect us. Luckily new applications are still being accepted which has put my mind at ease (a little) as without one we can not apply to go to our school of choice which we are almost agreed upon. ๐Ÿคฃ

Our PCP meeting is still due to take place over email or Skype or in some other technological way ๐Ÿ‘ฉโ€๐Ÿ’ป which is brilliant as we can get the ball rolling despite the current situation.

My main worry is the ‘temporary’ part of this announcement. When it’s safe to leave the house and get back to what will be put new normal, will EHCPs be enforceable again? Or will there be another reason to suspend them.

I worry about what’s going to happen in the future for the children with special needs. The world is only just starting to understand ASD and I worry this will set us as parents of these children back in our fight to get out children the best possible care.

That smile though…
Makes our recent sleepless nights worth every second!

William himself has had some amazing days recently. He’s spent a lot of time in the garden and engaging with our neighbours especially when food is involved ๐Ÿฒ honestly he’s like a little zombie trying to get brains ๐ŸงŸโ€โ™‚๏ธ

After the good days there is always a few bad. He’s not eating like he normally does. He doesn’t want to spend time with me… which is understandable but he doesn’t even want to spend time with Rusty ๐Ÿ• which is almost unheard of.

The nights he wont sleep and cant be settled are upon us. I feel so useless on these nights and could quite often sit and cry with him… pathetic I know.

Then the (disgusting) icing on the cake… this morning he was on top form and spread poo all over his room and himself. He was literally as happy as a pig in shit. ๐Ÿ– Then comes the trauma of having to hose him down and clean poo off his face and every other surface. It was like that scene in psycho. ๐Ÿ”ช๐Ÿšฟ

The a$$hole club
Bonding on the few days they have something in common

Posted in Emotions

Nothing is ever black or white, Its all Blue

Autism speaks! William doesn’t, but true love needs no words…

๐Ÿ’™๐Ÿ’™๐Ÿ’™

But our son isn’t disabled…Have you ever been asked to admit something you aren’t quite ready for?

Today our Health Visitor came to go through DLA with us, This is to help us financially support William as he gets older and ensure all his needs are adequately met. I was warned that the forms are not pleasant. Well they are in fact 61 pages of hell!!! ๐Ÿ˜ข

Is my son classed as disabled? I’ve only just plucked up the courage to tell people he has special needs, I know this is just me focusing on the wording but it stings to think that people will class him that way.

Getting hold of the form was hard. We went to the Wilson centre who told us to go to Jobcentre. We went to the Jobcentre to be told we needed PIP forms and to call a certain number… we don’t need PIP forms as he is under 16 but no we apparently needed PIP forms. WE DIDN’T!

There is no hiding from anything with the DLA form. Right from the beginning where it asks you to tell them what is wrong with your child and when did you notice? He has a severe developmental delay and I picked up on it from when he under a year old… It doesn’t give you the option to tell them you have your head in the sand for a year. That you were scared to admit it out loud.

There is then a full section about how he walks and gets around, which we aren’t allowed to fill in until he turns 3 so we will be doing it all again in March.

The rest of the section asks you to put time on things he can do or things you have to do for him and this is heartbreaking to fill in. I think the worst part was admitting how difficult bath times can be. He is fine sitting in water but as soon as we need to actually wash any part of him it becomes a traumatic experience. it can often be a 2 person job to bath him, one to hold him down so he doesnt hurt himself and one to wash him as adequately and quickly as possible.

We sent the form off and have a long wait ahead of us to find it if we are eligible, it can take 40 days for an initial answer and should his application be refused, we could send an appeal against their decision which will take more time.

Once again I can add this to the ever expanding list of things we are awaiting confirmation for…

Christmas Jumpers for our Sunday big nan visit

Its been a tough few weeks recently, William seems to have regressed in his behaviours and seems to be lashing out at me more than usual. Not his dad just me… what did I do? He purposely scratched my face when he was frustrated which I’m not going to lie hurt like a motherfucker! the valuable lesson I have taken from this is to make sure I keep his nails short however cutting them is an awful and thankless task. Imagine if an octopus had claws on each tentacle and you had to avoid 7 of them whilst pinning the other one down, that’s what its like cutting his nails. Except that the octopus is screaming and biting to get away from you.

Today we had a full on meltdown because I wouldn’t let him eat ‘another’ packet of Parma Violets. He went to find more and threw them all over the floor before throwing himself down too and refusing to get up… I tried to lift him but he’s very smart and makes himself go all floppy! considering developmentally he is less than a year old he does show some terrible two traits which we were told is a good sign (insert eye roll here ๐Ÿ™„)

His sleep is very disturbed now. From the moment we brought him home from the hospital he slept for 7pm until gone 10am and we had to wake him up not the other way round. People called us lucky. I don’t feel lucky anymore. He goes to his room at about 7 to 7.30pm and precedes to destroy his bedroom for a good hour or more. Draws opened and emptied, everything he can physically reach ends up on the floor and in pieces. Juice everywhere and if we are very ‘lucky’ he will often smear the contents of his nappy around the room. Three times this week we’ve had to hose the boy down in the shower and disinfect his room and carpets ready for the next day… we go through a lot of sheets and a lot of wash powder. The washing machine is always on.

William hums and seeks comfort in his clothing tags. His key worker has recently given him a lego chew brick so he can fulfil is oral sensitivity needs but keep his hands free to play.

This is most likely our last post until after the Christmas holidays so I want to end it on a positive note!

William has an appointment with a paediatric neurodevelopmental specialist in January 2020… this confirmation is correct and came after Sarahโญour amazing health visitor called our GP due to the last referral debacle.

We hope you all have a very merry christmas & a happy new year! ๐ŸŽ„๐Ÿฅ‚