Posted in Brief updates, EHCP Process

Shortest post ever

I’m crying, everybody is crying and for once its good news!

William has been accepted into my first-choice specialist school!! 🙌🏼😃🏫🤪💪🏼

I feel this wave of relief, I feel like tonight I can sleep better knowing that the end is in sight, we are not in limbo anymore and he has a school that will suit his needs.

His start date is September, and I don’t know what will happen once he finishes nursery in March as we all know that he is entitled to an education from then and the goal was for the Local Authority to secure a place for the spring term but that’s not happened but at least I know that something is happening and a timeframe for the first time in years, I have a review meeting soon with our Senco and hopefully it will discuss what will be in place until September, so I will keep you posted on that, but the main thing is that he has a school!

L and I are going to celebrate and have a glass (or two) of fizz 🍾🥂

Much Love 🥰, M. x

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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 autism and covid19, Emotions

There is an App for that…

Is it just me or is being a mom lonely? Is being a mom to a child with special needs even more lonely? Is being a single mom lonely? Or are we all just lonely and on our own different journeys?

At the time I wrote this post (or the scribbles that eventually become a post) in my trusty little blue notebook, I think it may have been the beginning of last year and then I’ve wrote some recently because some of it as usual makes no sense but at one point, I wrote a little list about things that occupy my mind when I can’t sleep which aren’t really valid now.

  • When did someone last hug me?
  • When did William last see so and so? Will he remember them?
  • When can I go somewhere without a lateral flow and PPE?
  • Will I ever need to get fully dressed for work again? (Jokes… I’m on camera 🎥)

I have the answers to all these now but obviously when I wrote them, the tear splashes on the page indicate how upset I was. Especially since number one was about hugs 🤣 and I am notoriously not a hugger. The 2m rule was a huge bonus for me!

 I’m not sure if its Covid and its many strands and the scare mongering that comes with it, but I seem to have become a little very reclusive despite restrictions being lifted. I find reasons not to do things or subconsciously put obstacles in the way.

Covid genuinely frightens me, I was first in line for the vaccines and the subsequent booster. ‘Yes please, inject me with that 5g tracker’ 🤣 each to their own and no judgement for those that have chosen not to but personally I believe that if you haven’t lost someone in the pandemic then you maybe don’t understand its devastating effects and that you are lucky, if in fact anyone can be lucky in such uncertain times. I question if this uncertainty will ever end, if covid will ever fully go away or we can just live with it, but my internal pessimist doesn’t think it will. This is our new normal and not to misquote Shane Meadows but This is England 22! 🏴󠁧󠁢󠁥󠁮󠁧󠁿

Every keeps talking about not been able to hide away forever and not been able to live with restrictions but I seem to be quite content being locked away in my home but I don’t think that’s a good thing, it’s a bit like I have Stockholm syndrome but to myself 🤪 Don’t get me wrong, I leave the house and see people and do social things but not like I used to, maybe its because I work from home and socialisation takes much more effort now, whereas before it was as simple as walking across the road from work and having a cheeky pint and a carvery. Maybe its because I’m a single co-parent now so I can’t just do things at the drop of a hat, it must fit in with work and William’s visitation with his dad and can require military preparation whether it is with or without William.

Everything can so easily be done over the phone or a computer now, what’s happening in the world? You can find out on your phone. What boxset should I binge watch now? Ask Google or check the Netflix rankings. Missing friends or family? Video calls via Facebook or WhatsApp. Need to work from home? There’s Microsoft Teams or Zoom for that. Doctors’ appointments? There’s an app for that (which is much quicker at giving appointments than my actual doctor) Meetings for William? All done remotely. Except for seeing Big Nanna, I would walk through a plague of Zombies for that! 🧟‍♀️

I’m not saying I never leave the house as I obviously do but its so easy not to. Everything is online now, I even met my boyfriend L on Tinder, highly recommended. Him (most the time 🤣) not the actual app, the app is like a meat market but more for fish, catfish that is… it passed some time during lockdown before restrictions were lifted and it was entertaining even though I lost all faith in humanity, some people seemed normal and then BAM! Flat earthers, criminal records, married men, women pretending to be men, couples looking for a third??? And that’s only a small fraction of the people I spoke to. What the actual fuck! I was on the verge of giving in when L messaged me. He seemed so normal, but my replies were terrible as I was expecting him to be a mental case or to try and convert me to scientology or something, how we formed a relationship, I will never know 🤷‍♀️ I think I would give the app about a 2.5 out of 10 but that’s purely down to L💕 don’t even get me started on POF or the mommy friends site peanut 🙄

I guess I bring on some of the loneliness myself, whether its social anxiety, pandemic panic or just laziness. Let’s face it I have explained previously about some of my anxieties around playdates and the like. I love my own company and I very rarely argue with myself 🤣

I was never really a visitor; I prefer people to come to me but then also freak out about people coming in my house and finding things to judge me on.

This is probably the worst analogy ever, but Covid is a little like those adverts you used to see on late night Channel 4 before Eurotrash aired… the ones about sexually transmitted disease.
You’ve slept with Anna, she has slept with John, Jamie, Jack and Steve, therefore you have slept with them too. You kind of have to think that like when it comes to contact with people who’ve had Covid… If I’m seeing so and so for a coffee then I must think about who that person has seen before me and where they have been and so on, its never ending and exhausting 🥱 having your mind working that hard when it already feels maxed out navigating day to day life is simply not possible.

I’m not really sure what the point to this little rant was, I’m lonely, I’m not lonely, there’s an app for everything and Covid is the new STI 🤷🏼‍♀️

Much love 😘 M. x

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Posted in Emotions

It doesn’t grow on trees

Kids are expensive!!! End of post.

Joking aside, I know all kids are expensive, but William sometimes takes the mick… He recently started eating the carpet in his bedroom 😭 Its was semi avoidable as I could rearrange his furniture to make the areas he had pulled, less accessible but he would just find more places. Fast forward a week and I now have laminate. Honestly, I question sometime if the universe thinks I’m made of money 🤷‍♀️ I work part time and run a house by myself, there is food in the cupboards, the heating is on and there is an abundance of love and cuddles when needed but that doesn’t cover some of the things I have needed to buy in a hurry, like laminate and fitting etc.

I want to talk about DLA, we all know that when I signed up for this, that I was very pessimistic about it. We didn’t need it. I could provide for William on my own. He isn’t disabled. Etc etc etc.

Below is a list of things off the top of my head in which DLA has helped us buy

  • A carpet cleaner (on to the second one)
  • Specialised bed protectors (multiple attempts and varieties)
  • Nappies (before nappy service)
  • Drinks bottles (multiple and in bulk)
  • Vitamins
  • Strollers and accessories (new, adaptive & second hand)
  • New or adaptive clothing to prevent Pica or SPD overload (multiple and in bulk)
  • Duplicating favourite toys (in case it breaks and need to swap it out asap)
  • Weighted blankets
  • Sensory lighting
  • Black out blinds
  • 6149072 chicken nuggets and counting
  • Taxis to appointments
  • Laminate flooring

Disability living allowance had made our lives so much easier financially over the last 2 years, as you can see from the above list, it has bought some random but much needed items. William, when he has access to it will smear and eat the contents of his nappy (this was before the nappy itself became his new snack) the carpet cleaner used to be out every other day… now it’s rare but still a necessity. Its difficult to know exactly what will work for William (or any child really) I found a juice bottle that William couldn’t spill but could easily drink from… it was amazing, so I bought a few. Fast forward to maybe the third or fourth batch that I bought, and they leaked all the time! Something had changed in the manufacturing process, and they were now useless to us. We then must try different bottles and try to find one that suits our needs and hope we can find more of it. We currently have 2 from ALDI that were quite expensive but holding up well 🤞
The same applies to sensory items, lets face it… anyone who has had to buy something with the words ‘sensory’, ‘adaptive’, ‘special needs’, ‘disabled’ or any thing of the like will know they tend to double the prices if not triple. There are actually companies out there that try to scam parents of special needs children by advertising such items… but that is a story for a later date.

Strollers?! Let’s not even go there about wheelchair services and how useless they are. No update since 17th November 2021, multiple emails, and calls. NO CONTACT! Whilst waiting for my referral to go through (the first time, the time it got lost in the ether) I bought a second-hand adaptive stroller which has been a godsend. It was expensive and is slowly falling apart now but it is honestly a lifeline, I had tried multiple reasonably priced strollers made for bigger children but they didn’t last 5 minuets 🙄 I have since had what I believe to my third referral to wheelchair services and now have a wheelchair sat in my office that is unsuitable for William to use… as you can tell from the lack of contact, they are in no rush to rectify it either. I think we are at a stage now where I will probably have to buy a brand new one instead. 💸

It’s a complete guessing game and changes all the time. William could wear fluffy coats which was great as I buy his clothes a year in advance (I spend a year buying the next size up so it isn’t such a hit for me when he has a growth spurt) suddenly he starts eating the coats and new ones are required that will keep him warm but that he can not eat. He was always able to wear Pj’s but now he can’t, now he takes off the pants and eats his nappy or smears its contents. I guess what will work and I’m not always right.

Last night his room was finished, flooring has been laid, walls are painted, decals are firmly stuck around the top, new bedding, lighting etc and I’m excited to see his little face when he sees it tonight. When the walls were painted, he was over the moon and his face was beautiful. His bedroom is devoid of most soft toys as he cannot have them due to fluff and been able to pull it out with his teeth, even the ones that were mine and his dads when we were younger 😢 the one thing I have found that he can have and enjoys are squishmallows, but their so bloody expensive. I managed to get a dinosaur one from ALDI which was a bargain (actually, I think it was from big nan) and he loves it. Little miss has her own for when she is here but its smaller, William has claimed this for himself when she isn’t around. I think I may have to add to his collection when I can and hopefully, they don’t become a problem too.

He does have a bed, I promise 🤣

Don’t be ashamed of claiming for DLA if you are entitled, they’re not easy forms to fill in and my first one nearly gave me a breakdown but my second was much easier and Williams renewal is in place ready for March, and it will undoubtedly be used well and on more random things that wouldn’t make sense to anyone else but make Williams life easier and safer.

All our love as always 😘, M.x

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Posted in Brief updates

New Year, same hopes and dreams

Its now 2022, how crazy is that?
It doesn’t feel like over 22 years ago when we were all relieved the millennium bug didn’t exist, you know that massive system issue that would affect computers and, in some cases, all electronic devices ⚡ How ridiculous is it that we thought that was possible 🤣

This is going to a big year for William, by the Easter term he should have a place in a specialised school. I’m under no illusion that’s its going to be easy… for example I contacted our case worker Richard on the 1st of December for some form of clarification on dates and have yet to receive a reply. When I email the main address, it usually takes two or three emails for anyone to bother replying and its usually a ‘no update’ generic response and that they will contact me, but I like to chase each month as its better to be an irritation and remembered than be forgotten. Those who speak the loudest are usually remembered. 📣

We were lucky enough to qualify for legal aid and have a solicitor on standby due to this after the failings in the local authority already. This isn’t because I want to sue although they did ask if I wanted to push for compensation… but why take money from an already underfunded department, in my opinion that would just be adding to the problem. They are on standby in case the promise of a specialised school by the term after his birthday is broken. They made this promise verbally and on his EHCP which is a legally binding document.

This is probably the biggest battle war we will face because once he has a place then he is in the right form of education until he reaches young adulthood… then we fight the next war.
Everything else, although it’s a battle isn’t as huge as schooling. (Although wheelchair services are currently the thorn in my side right now, but I’ll sort that out as and when)

This is going to be our year; I can feel it. It may not be easy, but it will definitely be the year in which things start falling into place for us and this Momma Bear will be able to have a rest from fighting. 🐻

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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 Events & Holidays

Inclusion pt.2

I wrote a post a few weeks ago about inclusion, today I want to do a little follow up… specifically about pretending to be inclusive.

SEN sessions seem to be available for most places, trampoline parks, splash zones, swimming pools, ice skating etc, it’s a wonderful thing but let’s talk about the ‘inclusivity’ of it, theses are great ways to include our community for certain functions, but they aren’t inclusive at all.

These sessions are usually available at times in which it is not possible for most to attend due to school, unless I am mistaken SEN stands for special educational needs… education been a priority meaning these sessions during term time (in some places they are term time only) in a morning is just not practical, it’s a great promotion I suppose. ‘Look at what we are doing for our SEN kids!’ when not actually making it inclusive at all. When questioned the responses are… ‘well if it proves popular we will look at opening more sessions and time’ it’s a bit backwards isn’t it? A bit of a cop out.

Some places do it a bit better and offer more inclusive times, but most do not. Hull city council, I’m talking to you now specifically. You go from one end of the scale to the other, during school hours or encroaching on bedtime, I know I make it sound like you can’t win but why not open up a peak slot? Take a risk and be inclusive!

SEN swimming at Woodford leisure centre – 6.30pm – 8.30pm

SEN skating at the ice arena – 9.30am – 10.30am

Companies do not have to do anything tailored to SEN or disabled kids and the fact they do is admirable but they fall into thee same traps the HCC do, school times or bedtimes and its not far, I understand you can’t please everyone and at the moment these times suit William with him still been without a school place but what about all the kids fortunate enough to be in school… why should they miss out?

During the summer half term, sessions were opened for SEN swimming, and it proved to be so popular that it sold out completely. Surely this is an indication if not a massive fucking sign that these kinds of events can be profitable for businesses and the council but yet they are so few and far between that’s its insulting.

And don’t even get me started on trying to find an autism friendly showing at the cinema, I have spent ages this morning looking at all 4 (Odeon, Vue, Cineworld & Reel) of my local cinemas and haven’t been able to find a single one and when I say that, I don’t mean that I couldn’t find one suitable for William, I mean that I can’t find one at all! Maybe I’m not looking for the right terms but it shouldn’t be this difficult, should it?

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Posted in Events & Holidays

It’s beginning to look a lot like… the end of November

Its that time of year, people have started putting their Christmas decorations up and I excitedly point them out to William hoping to see some kind of flash of recognition or magic in his eyes but there is nothing, but that doesn’t mean it will always be this way and I cling to that. This is going to be Williams fifth Christmas which means as per our tradition it will be his fifth Christmas Mickey toy and this year, I will start the tradition for Little Miss.

I was always a self-confessed scrooge; Christmas was never like it was portrayed in the movies and it always fell short of my expectations. There was no snow on the ground, we didn’t have a house full of people, all happy and playing board games. Don’t get me wrong, as a child our Christmases were magical… ‘Santa’ would fill little stockings outside our bedroom doors, and I would excitedly run into H’s bedroom. ‘he’s been!’ I would scream and the excitement would begin.
We weren’t allowed downstairs until my mom had been to pick up big nanna so we would sit on the top step waiting to hear the car pull into the driveway.
‘Santa’ always delivered except if it was something noisy… like the Christmas of 92 when H was severely disappointed at not getting a Teenage Ninja Mutant Turtles whistle. Apparently, it was sold out, but mom and dad didn’t want something so noisy in the house so got her a ball instead haha🏀

I’m a weirdo and love giving presents to people, I love thinking about what I feel people will appreciate and putting thought and love into gifts and then seeing their faces when they open them. On the flip side and this definitely makes me a hypocrite, I am a terrible person to buy for, I hate receiving gifts and being expected to open them in front of people, purely because I cannot hide my reactions… my face always gives me away. My girlfriends and I do a Secret Santa every year and I flat out refuse to open mine, mainly because on Christmas day, I don’t really have a lot to open but also so that I can do it in private. Birthdays are the same too. I am super grateful to anyone that thinks enough of me and is generous enough to buy a gift, but I like the privacy of opening them alone.

William’s Christmases aren’t like the movies, or the ones I had as a kid, but we adapt to suit the kind of Christmas he needs, and we try to make it as special for him as he can handle. Separation can be hard as it usually involves two Christmases and two birthdays, but William can only just cope with one. Thankfully me and his dad are on the same page and can make plans which suit William without it turning into an all-out war and I’m grateful for that.

Last year despite the covid restrictions, William had what I can only describe as our first peaceful Christmas; everything was done at his pace… there was no rushing and no expectations. Peace and joy for all.

My tree is not yet up as I don’t know how William will handle it due to his pica and his obsessive need to eat objects, for the last few years I’ve ran interference but it’s not getting any easier. Putting my tree up is magical to me; it’s the same tree we had as children, so it brings back many happy memories for me putting on all the old but very loved ornaments and seeing them incorporated with our own newer ones.  I think my favourite is a little green one which is half open and contains the three wise men, I mean… I think they are the tree wise men, but they are so worn that they could be miniature figures of the Bee Gees. Staying alive on my Christmas tree 😂

My stand-alone ornaments have long been abandoned and are currently sat gathering dust in my spare bedroom/office, I think I may donate them to a charity shop as I imagine they will sell this time of year and I often like to take William’s old clothes and toys in for them to be sold for a good purpose and go to a good home. I used to try and sell things on Facebook but it’s not worth it as everyone wants something for nothing whether they can afford it or not.

I guess what I really want to say to you all, is enjoy the up coming festive season in any which way you decide to celebrate it.

All my love 😘 M.x

Posted in Events & Holidays

Its our birthday! 🎈

And just like that, we turn 2 (well yesterday to be precise) 😊

It’s been a crazy 2 years, we’ve been read in 59 countries, we have 3 social media pages (links below), our story has been featured in online magazines, newspapers and other peoples blogs, there have been many ups and downs but sharing it with you all has made things so much easier and I am grateful to each and every one of our readers.

WORLD DOMINATION MAP

Here are the top 10 countries in which we are read in

  • United Kingdom 🇬🇧
  • USA 🇺🇸
  • Australia 🇦🇺
  • China 🇨🇳
  • Malta 🇲🇹
  • Ireland 🇮🇪
  • Spain 🇪🇸
  • Germany 🇩🇪
  • Canada 🇨🇦
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I think the best way to end our little celebratory post is to share our most popular posts in the last 2 years.

all our love 😘 M.x

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Posted in Emotions

Inclusion

Let’s talk about inclusion… as an adult, I can honestly say that I genuinely like my own company. It’s much harder to end up in an argument although not impossible. 🤣

We worry about our kids been included in the playground, getting invites for parties and things of the like but as a parent of a child with special needs inclusion is something we worry about for everything. Will I be able to navigate his adaptive stroller around that shop, do the disabled toilets have a suitable changing facility? Will that cafe or restaurant understand that he may be noisy and throw his food?

I feel uncomfortable in situations in which it is obvious that William is uncomfortable, it’s mainly because I still worry about what other people think and I’m not sure that will get go away but I hope it does.

I recently attended an event, or a gathering of sorts and I had the strangest experience, something that I have never experienced before; total all-encompassing inclusion and understanding. It sounds really strange to say this, but I have taken William to places that should have been safe for us, but they weren’t. I was terrified of doing a first new place/event, as I usually am because let’s face it, I can be the queen of anxiety and overthinking and believe me I had been doing a lot of it in the run up.  What if I William had a meltdown? What if people didn’t understand?

I panic about going to my parents or big nanna’s and they’re regular occurrences so its natural that I would panic about somewhere else, I often have my mom or my friend on a standby in case William doesn’t cope with new places or people and it’s a silly thing to think I have to do but it is just one of those things.

I guess what I am trying to say is sometimes you have to take that leap of faith, whether that is faith in a person, an event or yourself. If you’re not willing to try then how will you ever experience new things, how can you write people off as not understanding your child if you’re not giving them the opportunity to do so. In a world of people that can be judgmental and cruel, there are still people who are kind and accepting, people who include our children without trying.

Inclusion is something we all crave, whether we like to admit it or not, it can be in conversation at the dinner table, inclusion in a game of football on the park or in our case it’s the inclusion into society or inclusion into people’s lives. Its something we can take for granted when we are neurotypical, I know before having William it wasn’t something I even thought about but now the thoughts can be all consuming.

Today’s post it to simply say, think about what you are doing, think about the child that you may class as a little odd, think about birthday parties and events, think about how you would feel to be excluded, then think about how it would feel if the sole reason behind it, was because of who you were; something you have no control over.

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