Posted in Events & Holidays

Overcautious

I don’t think I have taken William to the beach in at least 3 years, when we think about covid, it must have been summer 2019, that means William was only 2 when we first went to the beach which sadly was the last time until recently.
Back in 2019 he loved it, we struggled to keep him out of the water even as it got colder. For a child that at the time hated having a bath, he loved the sea.

Riding the waves with Auntie Nelen & Kaylee 2019 x

So much has changed since that photo. I was worried it would be a huge sensory overload for him and it made me anxious about it, but it was one of those situations in which I wasn’t just worried about how William would handle it but how I would handle William and I’m not sure which I was more fearful about, and I think that makes me a bit selfish and sometimes it takes a while for me to put that aside. I am only human after all. 🤷‍♀️ I do wonder how many other things that I have been so worried about, that its stopped me from actually experiencing them or letting William experience them. As a natural worrier, I don’t think this will ever stop but as long as I take a breath, things will eventually become clearer in my mind and I will suck it up and leap into new experiences.

Well we took that leap, We had taken Little Miss on an impromptu beach visit and felt we should do the same for William. The thought of it gave me that feeling you get in your stomach, the one in which you aren’t sure if your scared, nervous, excited or about to shit yourself. 💩

We took Williams blue badge so we could secure a parking spot with enough space to safely put him in his wheelchair which was also close to places of interest for him. First stop was obviously fish and chips, because are you even at the beach if you don’t get some and since we visited Hornsea, it had to be Sullivans 🤤 William was a little picky but demolished his chips and battered sausage (Insert comment here from my dad🤣) after a bit of coercion and alot of my curry sauce.

We then walked along the front burning off our food and desperately trying to avoid the little black beetles that seem to be out in force this year 🙄 Getting his chair on to the sand was a bit of a nightmare as we had to find a sloped entrance, pushing it across the sand took strength I didn’t know I had 💪 As soon as he was out of his chair, he was straight in the water. If I hadn’t have stopped him, it would have been a lot more than just a paddle but he absolutely loved it. I worried that the smell, sound and textures would be too overwhelming for him but he took it all in his stride and absolutely surprised astounded me. I think sometimes I am guilty of underestimating him, in fact I know I am guilty of it as this isn’t the first time I have been proven to be overcautious.

We ended our day with a cheeky trip to Mr Moos ice cream place, I had never been before but Williams uncle Jim had told us a few times about how good it was. Liam and I had what I would class as ‘Fat Bastard’ desserts, they were huge but got eaten 🤣 and since William doesn’t really like ice cream, he had a huge piece of cake and seemed to thoroughly enjoy trying to feed himself with a spoon, there wasn’t a crumb left on his plate.

As you can see he was truly exhausted after our little adventure and we are very much looking forward to our next one… Peppa Pig Live! Something I never thought I would do, Mainly because I hate that little bratty talking piece of bacon but also because I wasn’t sure how William would take to it but if we don’t try it we will never know!
I will keep you posted on how it goes as it’s a big thing for our little blended family but I’m sure it won’t be our last adventure.

Much love, M 😘x

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Posted in Emotions, Open Letters

Prejudice

This started as an open letter but the more I have written the more I think it’s not, its ranty like a standard post so I’m unsure how to categorise it 🤷‍♀️

There are people out there who are prejudice against disabled children, people who may not be aware they are prejudice and some people that think it is acceptable to stereotype and judge without basing these feelings on facts or first-hand experience. There are many times in which William is judged like this and it is absolutely disgusting and genuinely makes me feel physically sick. Especially when it is by people that have in fact spent time with him no matter how little or how much.

There any many times William is purposely singled out and excluded from events and parties because of his disabilities. Sometimes this happens because people have misconceptions about him and his needs, these people are too arrogant or lazy to ask questions or educate themselves. Sometimes it happens for Williams own protection or comfort. As Williams Mom it is my job to advocate for him and make sure people around him understand him but if those people already have misconceptions about his needs, I cannot help. It isn’t just my job to advocate, it’s also his dad’s, both of our respective partners and anyone else who has a big part in William’s life. However, recently I am wondering if we have failed? Are we allowing people to make assumptions about William because we haven’t done enough? Is this a collective failure? Or a personal one to me? Or can you just not educate stupid people?

Believe it or not Williams needs do not have to limit him. William loves parties and events, actually let me clarify that, he loves cake, balloons, and the people he is closest to which tend to be a big part of all occasions. There are factors he may not cope with too well such as changes to his routine or loud noises but as his mom, I have learnt to handle this and how to neutralise (I’m not sure if this is the word I’m looking for) William’s discomfort and make situations more comfortable for him. However, it is not my responsibility to make other people more comfortable around him when they make no effort to understand him.

Your children will not catch William’s disabilities, in fact your child would learn to understand them and be accepting of all others and potentially have an understanding that I myself as a child did not have, in fact I didn’t have it up until my late 20’s. How brilliant would it be if this generation of children had a broader understanding of all disabilities, of people’s neurological differences and a better level of acceptance. Why would we not want our children to be better than we were?

Williams needs do not impact other children, William has needs in which are destructive to himself, not anyone else. I may have taken on occasion, a foot to the face, bite to the shoulder or thigh, but I am doing things in which he struggles with, administering medicine, changing his continence wear, stopping him from eating unsuitable items or restraining him to prevent him causing injury to himself. A child around William would never be in that position as there is no reason for them to be doing those things to him. Yet neurotypical children in the past have bitten or smacked William purely because he had a toy they wanted, or he wouldn’t play with them in a certain way or just because they could, but I do not judge those children based on this… Maybe I should? Maybe I should judge the parents?

William can be a handful, I can’t lie about that, nor would I want to but as he has grown, my ability and knowledge of his needs have too. Although there are a handful of people who know how to tend to his needs, the majority of the time, I am more than capable of doing this myself and its frankly downright insulting that people may think otherwise but don’t get me wrong, I do need a break sometimes but doesn’t any parent?

Having my child in your child’s life would not negatively impact your child in any way shape or form. William doesn’t show love as often as a neurotypical child or in the same ways, but he loves with all his heart and is hurt in the same manor in which other children may be hurt and I’m not talking physically.

I have spent time with neurotypical children who can be more of a handful than William due to things such as separation anxiety, over tiredness, being generally naughty or having tantrums because they can’t get their own way but let me translate these things into William’s versions.

He have never suffered from separation anxiety, as long as his needs are met, he is happy to be with his dad, myself or any other caregiver, no issue there because when he was younger, we made sure that he spent adequate time with everyone and didn’t solely rely on a single person as that would have created a straw for our own backs.

Over-tiredness? What is that? My kid can sleep through a tornado or have a house dropped on him and he would remain asleep. When he is tired, he will literally just go and lay down and go to sleep. Sometimes he doesn’t even make it to a bed or sofa and will sleep anywhere. Even if he has done this during the day he will happily be in his room from bedtime until he is tired. No fuss, no crying, no demands for attention or toys etc, although sometimes he gets both.

William can be naughty, all children can. He will touch the TV and laugh when he is told no. I will take his toy from him because its bedtime and he will duck under my arms and go back to grab it, but he doesn’t hit, scratch, nip or bite when he is naughty or mischievous like some other children do. I’m not saying it won’t happen in the future but in over 5 years it hasn’t happened yet.

Tantrums again fall into the category in which all kids can have them, William’s tantrums last seconds, when he realises, he isn’t immediately getting what he wants, he gets bored and walks away. Tantrum over. I have been around neurotypical children who can have a tantrum that can last hours. When I say tantrum, I mean tantrum. A meltdown is something completely different. A tantrum is purposeful behaviour in children and therefore can be shaped by rewarding desired behaviours, a bit like how you train a dog 🤣 whereas a meltdown is involuntary and cannot be stopped by rewarding the child or giving into demands because a meltdown doesn’t happen because he can’t get what he wants. Tantrums slowly go away as a child grows up (although some of my ex’s prove otherwise 😂), but meltdowns may never go away. If my child is having a meltdown, it is because he is pain, either physically or mentally not because he wants an ice-pop or something of the like.

Looking at these things in comparison, which child needs more attention? Should I be concerned about the neurotypical children in William’s life? Should I restrict access? There is only one answer, no. why? Because I’m not a cunt.

I don’t judge children based on their behaviour but maybe I should judge their parents? If that’s what people deem acceptable maybe I should jump on the bandwagon?

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Posted in Appointments

Precautionary

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

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

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

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

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

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

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

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

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Posted in Brief updates, Emotions

Calling all lazy parents

I would like to take a moment to state that I do not always want to play with my child. I sometimes can not go through the same set of flashcards for the 500th time I’m a day.

We all have moments in which we check our watch and realise bed time is a long way off. This doesn’t make us bad parents, it makes us tired parents. It makes us human.

Becoming a mom or dad doesn’t make us super human. It doesn’t change the fact that we crave time that’s ours and ours alone. That soak in the bath which involves candles, a book and enough time to shave both legs 🦵 time which doesn’t involve accidentally sitting on a rubber duck.

We want to watch TV or a movie that doesn’t involve animation or singing. I would like to have a power ballad stuck in my head instead of nursery rhymes.

There is no shame in needing a little time out. We can not always be on it 100% of the time and its important to try and take that time when we can, so we don’t burn out.

I remember thinking that my kid would have limited screen time… that didn’t happen. It is I who ended up with limited screen time 🤣 I can’t remember when I last watched Corrie when it actually aired instead of days later. I gave up completely on the other soaps as there just aren’t enough free hours in a day.

I work part time and absolutely adore my job. It gives me something to focus on that isn’t being Williams mom and I need that but I admire those full time workers and full time parents. I choose to work and if someone chooses not to then that is their business. There is a lit of stigma around parents that work and parents that don’t. There seems to be no happy medium. There is a archaic kind of judgement that working parents should be home raising and looking after their kids but then a judgement against those that choose to stay at home about how they should be working. I feel like non of us can win!

So this post is dedicated to the parents who aren’t ashamed to say that some days they only give 99%. The ones who don’t want to listen to the same song for the millionth time. Who pretend peppa pig goes to bed at 5pm. The ones who pretend toys are broken but have secretly take the batteries out 🔋 enjoy that 1% of time you need for yourself because you deserve it. You deserve to shave both legs, to wash all the conditioner out of your hair and to not have to hide in the kitchen when you want to eat a whole chocolate bar!

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Posted in EHCP Process, Emotions

School Allocations Pt.2

I’m writing this in real time but by the time you read it, almost two weeks will have passed and hopefully I’ve composed myself although as I edit this, I doubt it…

 I feel like I have hit a roadblock, like Wiley Coyote has dropped an anvil on me… I’ve cried a lot today and when I say that I mean messy, loud angry crying. I had to take a little bit of time out of work as I broke things and shouted at nothing. The worst thing is… It hasn’t even made me feel better.

On Friday I received a reply to my monthly email chase about Williams school allocation, as you will be aware if you have read any posts previously, William is due to start school in the spring term. This is what his caseworker told me over the phone, its in his EHCP and has been a focal point of all our discussions since. I time my email after the Local Authority have their monthly meeting which is around the 15th of each month, and I usually get a generic reply in return but this time the reply stated that they will be in touch before his transition in September?! September?! SEPT-FUCKING-TEMBER!!!!

Now I want to be quite clear about this, but William’s case worker is an absolute bag of wank is quite illusive, at one point I didn’t believe he existed until he called me to tell me they had agreed that William required a specialist school… I could have kissed him, here appears this man to tell me good news and then follows it up with his EHCP, the news I had waited for, for what felt like forever. Fast forward to now and my opinion is very different. Now he’s that cunty manager that’s sends you bad emails or feedback just as they are leaving the building, we all know the type or see them on television. Out the door, shouting back ‘you need to work a double’
Richard does this, he replies to my monthly emails at 5pm on a Friday and if I have any follow up questions, I have to wait until he’s back in the office, not that he ever replies to my questions anyway 🙄

I have emailed him twice, the SEND team, left messages and have yet to hear back with any clarification, was it just a mistype in the email? Did he use the wrong generic template? I’ve emailed our SENCO and Williams nursery to garner some kind of insight into whatever is happening, and no one can help me, but all said they will try to find out. Surely it will be in William’s file somewhere about what the plan is for him transitioning into a school? I find it hard to believe that they don’t have some kind of CRM system so all parties can view notes etc.

My realisation is that if they fail to find William a place by the end of May then they have breeched the EHCP then it doesn’t give me enough time before September to take them to a tribunal. They’ve fucked us and I genuinely believe it’s on purpose, they know it would never get to court before then and they are using it to their advantage.

I have emailed several people within the SEND department now, Head of, standards officer and the review manager. I’m hoping someone can help me. If I have no responses within the next 48 hours, I will be writing to my local MP.

My anger is akin to that I felt last February, when they did something similar during the allocation process for last September 2021. I cried and broke things back then too. I’m hoping by the time that this post goes live, that I have updated it with good news or even any news at all, hence the delayed live date but I’m not feeling very hopeful.
My anger is almost painful, I feel hot and sad, hopeless, alone and scared but not surprised by it. My main source of anger is that fact that they don’t seem to care about William, they don’t care that he is missing out on education, he has nursery at the moment but from 29th March, they cannot legally keep him there. What happens after that? I work and William’s dad works, do we quit? Do we take unpaid leave? Who pays my bills? Who looks after William? Legally he needs to be in school, but they don’t seem to care. I’m back Asking myself the question…. WHY DOESN’T MY SON MATTER?!

I have had one response from anyone in the SEND team, one, singular… and it wasn’t from Richard (I’m not shocked by this in the slightest but if you still have any faith in the Local authority the please feel free to insert your own shocked face here) the email I receive wasn’t especially useful but it came through at 8.20 the evening after I sent it, I’m sure that’s not office hours so it was very appreciated. The person that replied was one of the email addresses I found on the internet and fired something off to in the hopes they could help. Sadly, they couldn’t as it wasn’t her department, but they did say they would forward on my concerns to Richard’s manager. No reply from her yet either so I’m not holding out hope.

I emailed my M.P, Karl Turner who according to other people is a community champion for his constituents. His office replied the day after my initial email stating they were going to reach out to the children’s service at Hull City Council and will be in touch with me once he has a response. Hopefully they will reply quicker to him than they do me, in fact hopefully they will reply full stop.

The whole situation just devastates me, how can Richard leave it over a week (at the time of writing this line) to reply to multiple emails, everyone else was emailed on the Tuesday and haven’t replied, how if that effective or efficient. I have always had understanding as I am fully aware that they are an understaffed and unfunded department but now my understanding has gone. I have waited patiently for them to do their jobs properly for over 2 years if not more and they have done nothing but let us down, lie to us and intentionally keep us in the dark and a week later, I am asking myself the same question as I did last week… WHY DOESN’T MY SON MATTER?!
If I was keeping William out of school there would be fines, and potentially prosecution and jail time, so who will be accountable now? Who will be in trouble for him not been in education? WHY ISNT HIS EDUCATION IMPORTANT WHEN IT’S SOMEONE ELSE’S RESPONSIBILITY?!

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Posted in Events & Holidays

Autism Night Before Christmas – by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse
We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?
Our relatives come
But they don’t understand
The pleasure he gets
Just from flapping his hands.
“He needs discipline,” they say
“Just a well-needed smack,
You must learn to parent…”
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side
We know what it’s like
To live with the spectrum
The struggles and triumphs
Achievements, regressions…
But what they don’t know
And what they don’t see
Is the joy that we feel
Over simplicity
He said “hello”
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he’s ten,
He stopped saying the same thing
Again and again!
Others don’t realize
Just how we can cope
How we bravely hang on
At the end of our rope
But what they don’t see
Is the joy we can’t hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don’t know
Nor sometimes do we
Is that children with autism
Bring simplicity.
We don’t get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.
They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don’t get it
Or can’t get a clue
Take a walk in my shoes
And I’ll assure you
That even 10 minutes
Into the walk
You’ll look at me
With respect, even shock.
You will realize
What it is I go through
And the next time you judge
I can assure you
That you won’t say a thing
You’ll be quiet and learn,
Like the years that I did
When the tables were turned……

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Posted in Emotions

My own journey

8th January 2018

Look at this girl and analyse what you are seeing. A happy young mom holding her sleeping baby posing for her husband to take a photo… but that’s not whats really happening here.

It was my first day back at work after almost a year off. I woke up early, did my hair and make up to plaster over the cracks of how I was truly feeling.

I remember feeling relief as I left the house; like a huge weight was lifted off my shoulders. I could finally be away from William. My job has always been a constant in my life, since I was 17 so I felt like I was going back to do something I was really good at and since that wasn’t how I felt about being a mom, it made me really happy.

Only it wasn’t a relief, things had changed and people had left and I couldn’t focus on any one task. I was now part time and there weren’t enough hours in a day. I was constantly chasing my own tail. I remember coming home and faking excited to see William… I should have missed him. I held him close whilst he nodded off and had a little cry because ‘I missed him’ only I cried because I didnt. I cried for me. Not for him.

‘Take a picture Dave’ I don’t have many pictures of William and I over his first 2 years purely because I was alway the one behind the camera (This made post separation purging a nightmare🤣) I felt it was important to take a picture and prove that I was OK. That I was happy. Its silly isn’t it, that’s what this social media age has done to us. I think that’s why on here I try to be as honest and open as possible.

I’m not ashamed to say I was I was spiralling down a very dark hole and ended up at a stage I couldn’t see the light. I worried about my family dying when there was nothing wrong with them but the thought consumed me and kept me awake at night, I couldn’t cope with the changes is my career and found myself struggling to do the most simple of tasks but faking it with a smile and a cheery attitude. William was missing his milestones and I thought it was my fault, did I do something wrong during pregnancy? Was it because I didn’t love him enough? I began focusing on the fact that he might be taken away from me, social services would somehow get involved and take one look at me and know that it was my fault.

William was 18 months old and I had reached a point in which I felt like things would be better if I wasn’t around anymore by the time I sought help. I spoke to the doctor and just sobbed, I don’t know how he could possibly understand what I was saying but he listened and offered me help and I personally chose to be medicated, Sertraline to help with my depression and Propranolol for anxiety. It was hard, really hard and I came off them early and I wasn’t ready and soon spiraled back down that hole but I knew… I knew I wasn’t ready and went straight back to the doctor and this time when I thought I was ready, we slowly weaned off them and it worked.

For two years I have been off all medication and coping well. I have embraced that darkness I felt and can happily share my story. William is my word and the love I have for him was always there but was hidden by the storm clouds in my head. It didn’t flood in immediately but bit by bit as the clouds cleared, just like the sun does… it creeped through.

I know that Williams delays and medical issues are not my fault, that I did everything right when pregnant and that I loved him unconditionally from the moment I saw him on my scan and that even though I didn’t feel it, he did. He knew I loved him and still knows now.

There are days, even now in which I feel a darkness but speaking to people and being open about it really helps. This blog saved me as did all of you who read it, whether its ever post or just one. Each of you help me overcome every hurdle, every obstacle just by allowing me a platform to rant and cry about how I feel. Sometimes about myself or sometimes about the system that fails us.

Thank you and if anyone needs to talk please get in touch, with me, with a friend, a doctor. Don’t keep it to yourself. Darkness isn’t as lonely if you have someone by your side.🥰

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Posted in Appointments, EHCP Process

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 😭😭😭

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 person’s ability to receive communication is severely limited due to a language disorder or a profound difficulty in interpersonal interaction.   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.   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 🤣 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 year🙏🏻)
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 😊

Much Love M.x

Posted in Appointments

Hello

Its a Monday and when I was office based it used to be my favourite day of the week but not anymore, today feel like the most Monday-ist Monday ever! In the words of that Geldof prick and school shooter Brenda Spencer… ‘I don’t like Mondays.’

Today me got to meet our new health visitor; Louise. we all know how much we rated Sarah so she does have a lot to live up to. Louise has been the health visitor for our area for 15 years which is a long time for a health visitor to remain in the profession.

She turned up in full PPE as you would expect in todays current climate, Mask, goggles, gloves and full length plastic apron. Brilliant first impression… the neighbours must think we either stink or are getting fumigated 🦨🤣

She introduced herself and immediately jumped into questions about William, I must say the sceptic in me immediately though she hadn’t read his notes but she was also referring to him and wanted a thorough picture for herself of his capabilities and behaviours.

She confirmed she will be attending next Mondays meeting about his EHCP just like Sarah used to despite not receiving the official invitation.

Before I could even ask her about the Nappy Service she told me she had looked into our request and there was no leeway with him being under four, again this impressed me that she had looked into things that we had hit brick walls with without having to be asked. This one was on my little things I had written down during the months I was unable to speak with Sarah.

She has decided to put us through to a sleep specialist to help us hopefully get William to sleep easier and keep him asleep, this will involve lots of assessments and advice before potentially leading to medication such as melatonin.
Melatonin will help most kids fall to sleep but not all… The problem is some parents believe it will help a child who is procrastinating going to bed, stop a child waking up early or having nightmares but that isn’t the case. Melatonin is usually a natural hormone that our brains release in order to help us fall to sleep. Melatonin supplements are available easily online but they are NOT regulated and may do more harm than good. If you are considering Melatonin please ensure you speak to a professional before buying something that you cant be 100% sure of what’s in it. There are concerns that because melatonin is a hormone that it may effect your child’s development when they hit puberty and it is something we will need to consider deeply if we reach that stage.

I asked her to refer us to Wheelchair services so we can get a specialised buggy but she wasn’t sure if she was able to do so. she said she would be in touch about it and… within 2 hours of her leaving our house she was on the phone advising us of who we need to speak to as only two organisations can make that referral, Occupational health and Physiotherapy but William doesn’t need any of these 😕 Its not that he can’t walk. Far from it. Its when he does walk he will drop to the floor in a floppy state no matter where he is including roads, its the fact he has no danger awareness and a buggy at times he goes floppy or has a meltdown would prevent him from getting hurt. I’ve lost count of the amount of time Dave has had to stop cars because or child is laid in the street. 🚗 we have spoken to our G.P surgery and have a telephone consultation booked next week for the doctor to decide if its appropriate for him to refer us 🙄

I’m not sure if we mentioned the questionnaires that are sent out prior to a child’s development check up but they have always been brutal to us. They focus on what children should be doing for their age group and as we are all aware William isn’t at his age group so it was a lot of negatives for us. These are called the Ages & stages questionnaires and unless I am mistaken are to identify children who may have developmental disabilities.
He will now be assessed based on the Nelson scale which focuses on the age he is at for each area rather than where he should be for his actual age. I think this will be much easier to help us understand the next steps in his development. We see little improvements and new achievements but we find that the standard ages and stages just doesn’t celebrate or include those and will continue to score zeros despite developing slowly at his own pace.

On the plus she has weighed and measured him and he is in the 25th percentile which is where he has been all along. This made me feel so much better about his eating habits as I do worry he may be underweight but apparently he is perfectly healthy… which is always good to hear.

I think because Sarah was all we had know for 4 years we held her on a pedestal and it was unfair to presume Louise would be inferior to her. She has already made a brilliant first impression but I guess I’m just skeptical due to the amount of agencies who have failed to uphold their promises but Louise seems really promising and honest and I guess that’s all we can ask for. She will only be with us until William starts school in a years time in which the school support will take over… if we get in but thats a whole other worry for another day.

As always, much love from The Buckley’s 😘 xxx

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.