Posted in Appointments

Transition meeting Pt. 1

I think terrified is the best way to describe how I am feeling about William transitioning into ab school setting from his nursery. The fear keeps me awake at night as I toss and turn thinking about how he will handle a new environment and different levels of support. When I think that his days at his amazing nursery are numbered it genuinely makes my sad.

This was William just over 2 years ago on his first day at nursery, he looks so young and baby faced. He loved it whilst I sat at home and cried. I didn’t think anyone could look after my child as well as I could but I was wrong… Over the last 2 years they have helped William and myself in more ways that I could have ever anticipated, they helped me understand some of his educational needs and pushed us through the right channels for support, funding and diagnosis. Thinking that his last days are slowly coming upon us brings tears to my eye, not a single tear or quiet tears but messy heartbroken sobs. I know it is almost time for him to continue on his educational journey but i’m not quite ready to say goodbye to them ๐Ÿ˜ญ๐Ÿ˜ญ๐Ÿ˜ญ

Today was part one of the transition meetings to get William into the right school with the right support. Unfortunately we still haven’t received his draft EHCP however we are aware that he has been banded as intensive for the level of support he needs which is the top level. Below are the definition and school needs for children branded due to Speech, Language and Communication difficulties as Intensive or severe provided by Hull Local Offer. William easily fits into the ‘Intensive’ category however after discussing with his SENCO; Lisa, he would standardly have been placed in ‘severe’ had he have been going to a specialised school as his level of support would have been less within that environment.

LevelDescriptorsCurriculum needs
SevereVery severe expressive and/or receptive language difficulties of a specific nature, which are significantly impacting on progress and social, emotional, and behavioural development. Child/young person of broadly average ability.
or
child/young person with a very severe communication disorder, which is significantly impacting on progress and social, emotional and behavioural development.
or
child/young personโ€™s ability to receive communication is severely limited due to a language disorder or a profound difficulty in interpersonal interaction. ย  Child/young person may have emerging mental health difficulties and/or experience a high level of anxiety in most school situations.
Intensive programmes to develop understanding of language, expressive language, speech intelligibility and/or social communication skills. Intensive programmes to help the child/young person develop alternative or augmentative means of communication to a level commensurate with level of ability. Differentiated programmes of study to facilitate interaction with the curriculum either by oral, signing, symbol or written systems. Programmes of support to enable the child/young person to become competent users of communication aids / technology.  
IntensiveProfound speech, language and communication needs as a result of which a child at school entry age is only likely to function below the 12-month level in relation to these skills.
and
child/young person uses primitive gestures, a few signs/symbols and/or has almost no spoken language.
and
child/young person is unable to form words or make adequate use of augmentative systems of communication.
and
child/young person has severe limitations in the expression of intentional communication. or child/young person has significant physical difficulties, with less cognitive impairment, which require voice output communication aids. ย  The child/young person may have an accumulation of layered needs, which could include mental health, relationships, behavioural, physical, medical, sensory, communication & cognitive needs.
Child/young person needs very early (infant) developmental programmes in relation to language/communication. Child/young person requires intensive training to acquire the limited use of means of alternative communication systems (e.g., signs/symbols systems). Child/young person requires intensive programmes to develop pre-lingual articulatory skills (i.e., formation of sounds in words). Child/young person needs programmes of work which recognises their high level of dependency in relation to language and communication. Intensive programmes of support to enable the child/young person to become competent users of communication aids / technology.  

The guest stars in todays transition meeting
* Lisa – SENCO
* Jenny – Specialised school representative
* Zara – Williams 1:1 support from nursery
* Chris – Head of chosen mainstream school
* Me – Mom, stress head, emotional wreck etc

For those who has tuned in to my blog before will notice Val isn’t listed as Williams 1:1 support, sadly Val decided to take partial retirement which means she no longer works Williams days. This did make me very sad as Val is amazing with William (Please feel free to remember when I pitched a fit because he left Linda to go to Val ๐Ÿคฃ I soon ate my words about that one) however William loves Zara and she has been in the sunshine room with him all along so i am quite happy with the change and happy for val to have some well deserved rest.

I got to meet the head of our chosen mainstream school today and she seems very similar to the head teacher who was in place when I attentended in the 90’s. She asked me to tell her about William, nothing specific but my view on what he is like as a child. I got a little emotional explaining how loving he is in his own ways but it was nice to be asked, not about his development or what he can and cant do but about how he is as my son.

Our chosen mainstream has two classes for Williams age group with each having 30 children, he is currently in a setting of only 8 kids so the transition may be a big shock for him, the plan is currently to aim to start this by the autumn term which is October/November rather than the standard September term. It will be easier for William to adapt to his new setting if he is eased into it slowly, starting out with shorter days or weeks which are to be agreed once his EHCP is in place. When this finally does come through I can name our chosen school with the view of a specialised setting in the future (ideally the following year๐Ÿ™๐Ÿป)
On top of the EHCP naming I am also following the standardised appeal process to cover all bases to ensure we don’t have another crushing disappointment like we did when it came to specialised school allocations but i’m not holding my breath. Any parent of a child with special needs will tell you how fucked up the system is and how you get used to being let down by a system that is supposed to ensure your child has the best possible care.

As always I will keep you posted on what is to come and stay tuned for a catch up on other things that have happened within the last few months ๐Ÿ˜Š

Much Love M.x

Posted in autism and covid19, Emotions

Am I overreacting?

I want to talk about why we now own these two DVDs

I used to love DVDs, movies are a big passion of mine and had over two thousand DVDs not including TV box sets or Christmas films. About two years ago we realised like many other people that they were just gathering dust because we had become more reliant on streaming services which made me a little sad as I had been collecting them since I was about thirteen and finally decided to get rid of my VHS. When I met Dave he too shared my passion for movies and our collection just grew. I remember the last DVD I bought was for Dave for Christmas 2014 and it was The Guardians of The Galaxy. We gave almost every single DVD away, Big Nan got first dibs of the chick flicks, I kept the Disney classic in a DVD folder and the rest went to our close friends.

We don’t even own a DVD player but yet yesterday Dave bought these two DVDs ๐Ÿ˜•

Yesterday was Williams 6 month eye check at the Eye Hospital and as I was working and only one parent is allowed to attend due to Covid-19 restrictions Dave went on his own… I’m getting better at trusting anyone other than myself to ask the right questions now… sometimes. They always struggle to do his eye check as he isn’t fully cooperative, They have told us at the last two checks that everything seems fine but they can’t be 100% sure because he won’t let them check as thoroughly as they would like. Because of this we keep going back, waiting for the day they will discharge us as a patient. William didn’t get to see his Auntie H either as she was super busy.

As a treat afterwards for being a good boy Dave took William into the town centre to get him a treat for his dinner. This usually results in copious amounts of cheese straws and sausage rolls from Cooplands. The boy is an absolute savory fiend.

Anyone that knows Dave knows that he loves his Playstation. Not as much as he love William or Rusty but I think it’s on par with me ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ so he popped into CEX in Prospect Centre to look at some games. This is somewhere that when at the height of my DVD addiction I used to frequent on my lunch break when I worked in the offices above. ๐Ÿ’ฟ The staff have always been pleasant, helpful and friendly.
William is a sneaky bugger when he wants to be, we’ve been in shops when he has grabbed something random off the shelves because it caught his eye and I’ve nearly left with it or when he has started trying to eat a wrapped chocolate bar and ‘ve had to pay for it knowing full well he doesn’t like turkish delight (It’s a good job I do… keep up the bright wrappers Frys ๐Ÿ˜‰)

Dave got shouted at by a woman in CEX.
I will repeat that… shouted at by a woman in CEX.
That’s CEX the most relaxed shop in the world.
‘You’re not allowed to touch!’
‘He can’t touch that!’
‘Covid!’
Now I’m not sure if I am overreacting here but William sits in what is in my opinion clearly a disability stroller. There is a hidden disability lanyard hanging from one handle and a large disc on the other. I’m really angry that they chose to address this by shouting and for anyone but Dave, this could have caused upset or major embarrassment, I speak from experience when I say that on some days life as a special needs parent is one comment, look or cough away from a breakdown. She at this point had no idea if he was planning on purchasing the items or not.
I understand that in the current climate you have to be so careful but these DVDs are wrapped in plastic and could easily be wiped down, We carry antibacterial wipes in our change bag and could have wiped them down ourselves.
I’m also not saying that because William has additional needs that he doesn’t need to follow the rules but there should be at least some modicum of understanding. or a better way of going about it.
Dave bought the DVDs and basically told the woman that was his intention all along despite not knowing William had hold of them as a way of saying fuck you. Mr however I think I would have shamed her, told her loudly all about Williams needs and difficulties and made her feel like an idiot, offered to wipe them down or to buy them if that wasn’t feasible. She could have gone about it in a much better way; she could have walked over and explained to Dave who would have apologised and explained but she didn’t… she chose to berate Dave across the shop floor.
I’m not sure if i’m being oversensitive but I do feel in the year 2020 people should be more understanding before jumping to conclusions. William wasn’t running amok in the store he was confined to his stroller clearly displaying he had additional needs.
If you aren’t allowed to touch the DVDs or Games how are you supposed to read the back to ensure they are suitable? They’ve all been wrapped in the clear plastic, for what reason?

My current writing situation ๐Ÿฅฐ

On a positive note…
Last night William had just had a bum change (not the positive bit ๐Ÿคฎ) and he reached his arms out to me like he wanted to be carried and when I reached down he placed his arm around my neck and put his head on my shoulder. He wanted to give me a cuddle ๐Ÿฅฐ He has never actively cuddled before. He will climb up next to you and snuggle in but he initiated a cuddle for the first time. ๐Ÿฅฒ I cried and ruined the moment because he then pinched my glasses and ran away laughing but it was so worth it!

Posted in Events & Holidays

Family Holiday

As many of you will be aware we have recently been on a big family holiday for the first time in 2 years and as you can imagine things with William have changed greatly since our last vacation.
I love getting together with our family but as anyone will be aware it can be stressful; throw an autistic child in the mix and it can be nuclear which meant my stress levels peaked before we had even left the house.
‘What can he cope without?’
‘What if he smears whilst we are there?’
‘What if he cant handle it being around so many people?’

I know it sounds a little crazy as my mum and dad were there and he loves them both so much and my dad will babysit when I was office based, my sister and niece were there and he loves his Auntie Nellen (or H to everyone else, the letter H doesn’t exist in Kingston upon Ull. โš™Yes the cog used to be our logo ๐Ÿ™„) Big nanna came for the first time and we all know what an amazing bond they have and finally his Uncle Jim and lets face it unless he has to change a nappy he is amazing with him (if we ignore the fact he’s banged Williams head more times than Rick Allen has banged his drums๐Ÿฅ)

Here are some of my favourite pictures from the week ๐Ÿฅฐ๐Ÿฅฐ๐Ÿฅฐ

Picture 1 – We were delighted to be able to borrow a freeloader carrier which personally is amazing for parents of children with special needs to be able to safely carry them to areas you would not be able to get to with a stroller or wheelchair. Unlike a baby carrier it has a seat on an reinforced hinge which means that when your child sits on it the straps are not brutally cutting into your flesh due to the weight of your lump child. Its a big expense as they are imported from America but I would honestly say they are definitely worth it and we will eventually be looking at getting one of our own ๐Ÿ’ธ๐Ÿ’ธ๐Ÿ’ธ
Click here to check them out

Picture 2 – We’ve discussed on previous posts about Williams refusal to walk and lack of awareness when it comes to roads. Here is a prime example. We had walked for less than 2 minutes and William collapsed in the road. He makes himself go floppy so he is impossible to grab onto and will just lay wherever he has fallen an believe me he is more slippery than a bar of soap and his limbs just slide through your hands. ๐Ÿงผ

Picture 3 – William love bubbles but hates bath time ๐Ÿ› so after a traumatic bath which was much needed as he decided to sit in the stream we left all the bubbles in the tub for him to lay and play in. Dave took so many photos and Big Nanna sat in a chair watching him have the time of his life and I’m so glad she got to see that as she had witnessed a meltdown at the beginning of the week which I will talk about later.

Picture 4 – Dave loves the walks up in the dales and has climbed the peaks and everything… Me; no so much. My version of exercise is walking to fridge or picking up my phone to order on just eat. ๐Ÿ• We decided to spend one of our days in our little 3 person bubble and went to explore the village. Whilst sat with his dad on the bank of a deep stream William lost a one of his Wellies over the edge and Dave had to go in and fetch it… as you can see no shits were given by William at all and he is actually calmly sat on grass which is a big improvement.

Picture 5 – Dave referred to this table as a 70’s party table due to its mirrored surface. William had his first little holiday romance… with himself. It’s like he discovered his reflection for the first time and spent a good amount of his time kissing his reflection ๐Ÿ˜˜ William doesn’t quite understand what a kiss is and his version is coming at your mouth with his mouth open and there is always a risk you will get bitten but its worth it, I would take a million bites for one kiss.

Picture 6 – He loved the streams that ran though the village and we went in for splashes at every opportunity. We learnt a few things on these mini adventures. My wellies had holes in (they were about 10 years old), William loves the running water and decided to wade as far as we would let him, to the point the water was over his wellies so I wasn’t the only one with wet feet and finally that he will literally just sit anywhere including in said stream ๐Ÿ˜‚ It made the short walk back to cottage much longer, wetter and colder.

William had one meltdown whilst we were away and unfortunately it was the worst we have experienced so far. He went red and started screaming and repeatedly hitting himself in the face with both his hands clenched together ๐Ÿ˜ข It hurts me to see him so distressed however I now know not to try and restrain him as it makes it much worse.
Big nanna has never experienced a full meltdown and it really frightened her. I could see it in her eyes and asking me to stop him hitting himself and asking me what was wrong and to be honest I couldn’t work it out. He has been to toilet, he had eaten well and nothing he hadn’t eaten before, he had his favourite toys and Hey Duggee was on the TV. I don’t know if it was the new environment or he just wasn’t feeling himself but it really frightened her which upset me alot.

I think being told about the way someone reacts due to their additional needs is very different from seeing it first hand.
Autism in a spectrum which is so vast and complicated it is difficult for people to understand, even those who are close to someone with ASD don’t fully understand the possibilities or the limitiations and it can make explaining them exhausting ๐Ÿฅฑ

Some things never change…

The journey home was uneventful as you can see from the above picture the journey home was uneventful, either that or they just didn’t think much to mine and H’s music choices ๐ŸŽถ

William missed his friends back home and Rusty which was evident because as soon as he saw each of them he was so happy. He practically ran straight to our next door neighbours for cuddles, my pets and child are all starting to think they live there ๐Ÿ˜‚ but in all seriousness I actually love it. He has an amazing bond with the full family and I trust the girls to take him to park and be safe with him and it takes alot for me let anyone do that. He was sat on the roundabout in park and quietly ate his packed lunch as it went round when some older kids (secondary school) asked one of the girls to make him move and she told them no, he has problems and he’s happy where he is and they just left. She has more balls than I think I would have done.

One of our other neighbours got back from their holidays today and as you can see William missed them that much he sat in their car and made himself comfortable.
GTA eat your heart out ๐Ÿš—

As always much love, The Buckleys ๐Ÿ˜˜

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

Our one and only?


















Is it fair?

I always thought I wanted two children but once we actually started trying to get pregnant I soon changed my mind. I have a sister (H) and although we argued; like sisters do but I couldn’t have imagined my childhood without her or even my life now.
Dave however always wanted just one. He too has a sibling but not with a bond like H and I have and maybe that is why he only ever wanted one.

We agreed we would discuss it again when William turned one… Still only wanted one child.
We will discuss it again when he goes to school and again when we turn 34, after all I wouldn’t want to fall into that geriatric mom category of 35!!! since when was 35 classed as geriatric?!

I always said that I couldn’t put myself through it again but I get this little pang when I see my friends with their ‘normal’ or neurotypical children. Surely I deserve that? Why can’t I have it?
All those moments I feel like I’ve been deprived of… A baby who will call me Mummy and will be receptive to my cuddles. A baby who can be comforted by me. A baby who would love me back.

Facebook is the root of all evil… & envy, its banner should be green not blue! I see so many beautiful babies and children on my news feed. Children much younger than William easily communicating with their parents and making it look so easy.
Children singing, counting and developing at the correct rates and it breaks my heart ๐Ÿ’” I am so happy for all of my friends who are parents and why shouldn’t they sing it from the rooftops when their child learns something new. It just gets to a point that I just can’t see it anymore. I have un-followed so many people because I am just brimming with jealousy and it hurts me to admit that because I would never wish any parent to go through what we are but I just want what they have. Why can’t I have that?

But then I look at William who has started eating bread, not toasted bread or chocolate bread but normal bread and I want to celebrate it. He ate a sandwich!!! not one but several! My little man who is repulsed by the touch of bread actually ate a sandwich himself ๐Ÿคญ But then he also decided he didn’t want to wear any clothes at all and chose to ignore me for what feels like the 1095th day in row.


Before i continue i just want to say it again…. My baby ate a sandwich, not once but on three separate occasions last week!!! He touched bread and it didn’t end in him throwing it on the floor and recoiling in disgust. It was a beautiful sight as you can see.

This week I called my mom very teary because I had ‘that moment’ a moment most parents have every day. me and William had spent the day I the garden and needed a bath but bath times are traumatic at best so I decided to turn the shower head on and sit underneath it with him. He laid there so calm as the water rained down on us and looked me in the eyes the entire time. That moment is something I had been waiting for for 3 years. That moment he looked at me and everything was fine. That moment I knew he did love me but shows it in his own way.

If I don’t get another moment for the next three years I can hold on to those perfect 10 minutes in which he just looked at me and with his eyes told me I was doing OK as his mom.

I think about how William would react to a sibling and I always (well 90% of the time) think it would be really selfish of us to even consider it. William needs a lot of attention and he would not have that like he does now. I don’t think he could cope with the immediate and permanent changes to his routine. You couldn’t train a baby into doing things the way your older child needs/wants them to be done.

But then…
I think maybe just maybe William may flourish with a sibling. Research shows for neurotypical people that having a sibling can have a positive impact on both mental and physical health. However separate studies based on siblings of autistic children clearly show that the neurotypical child often develop social and emotional difficulties.
Would there ever be enough time to give a second child the attention the would need or deserve?
I look (again with envy) at other parents who are in a similar situation to ours and wonder how they make it look so easy? so effortless? I often think of these parents as ‘the Naturals’ whose days are exhausting because they have spent them being the truly amazing parents that they are. I’m an ‘Impostor Parent’ and am exhausted from spending my days trying to be an adequate parent.

I think of the trying, the pregnancy, the complications, the labour and the mental health issues that came after and I just think ‘Fuck it! lets get another dog!’
but then I think of how often Rusty used to shit on the carpet and think better of it. I clean enough poo from the floor as it is.
I think it’s best off just staying the five of us… well four if I get my way about that arsehole cat. (totally kidding as i was heartbroken whilst he was missing ๐Ÿˆbut still an arsehole)

Our perfect/not so perfect little family.