Posted in Events & Holidays

It’ll be lonely this Christmas 🎄

Any of you that have read past posts will be aware that I love and hate Christmas, there is no inbetween for me, I love time off work, spending time with the Hobman clan, giving presents, having copious amounts of chocolate in the house and even my dad making the same jokes he’s made for the last 10 years… (Kaylee and her heelies – they lasted 5 whole minutes…. up and down the drive once, where all the rubbish will go and how we would each have to take some home and the fact my mom’s turkey is dry) I’m honestly surprised that my mom hasn’t chinned him.🤣

I was genuinely looking forward to this Christmas, last Christmas our family was separated due to the government restrictions just like many others across the world, so it made this Christmas that bit more special. There are four generations of us: big nanna, my mom and dad, me and H and then William and Kaylee.

Williams letter from the fat man 🎅

Everything was planned to the finest detail, William would spend Christmas eve with his dad, come home for bedtime, read his letter from Father Christmas and his usual Santa book ‘Santa comes to Hull’.

As you can see, it’s been a tradition since the year he was born. x

I always sneak in a cheeky reading of ‘the night before Christmas’ as its my guilty pleasure. Christmas day, we would try to take things at William pace, I would be dressed and ready before he woke up, breakfast and then gifts before letting him chill out and finally setting off to my parents for lunch and family time… but that didn’t happen.

What do you do when your sons dad messages you saying he’s got covid and its Christmas eve and he’s got your son? Again, I shouldn’t have to say it, but this isn’t a post in which I slate William’s dad. Although when I read that message, there were a few expletives running round my head purely because of the ramifications of his message but I wish him no harm and hope that he and his girlfriend recover quickly, mainly because I need childcare for when I go back to work in January (Jokes 🤣)

After having a cry and getting angry, I made the decision to stay home with William in order to protect my loved ones. My family are all vaccinated and boosted but I just couldn’t take the risk, especially with big nanna. I would never have forgiven myself if she caught it from us.

William and I have been doing lateral flows each morning and so far, both have come back negative and hopefully they stay that way but I will keep you posted. 🤞 I’m not going to lie, it was a really difficult decision to make, not only did it mean I couldn’t be with my family on Christmas, but it also meant I couldn’t spend Christmas eve with L. Our first Christmas together and we couldn’t see each other until late Christmas night so that he could reduce the risk for family too.

I think Mud had it right when they said ‘It’ll be lonely this Christmas’ because it really was… William seemed to have a great day though. We opened presents, ate chocolates, and generally made a mess of my very clean house (only because I was manic cleaning Christmas eve as if Santa was a house inspector🧼)
William was a little overwhelmed as there were new things in the living room but because there was no panic or rush to be out the door, he could just take things at his own pace and seemed to enjoy exploring his new things. We even had all the presents open before lunch, except for the ones L brought on the evening.

I’m sure I said this last year but next Christmas is going to be the best one yet… At least I hope so x

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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 Reviews

Paddy and Christine McGuinness: Our Family and Autism – Review

Was anyone else massively disappointed with ‘Paddy and Christine McGuinness: Our family and autism’? I can’t be the only one who watched it and when it was over thought ‘is that it?’

The very beginning of the documentary was raw and even painful, as Paddy told the camera’s he didn’t know if he kids loved him or knew he loved them; it hit home. My partner reached for the tissues as I immediately started blubbing as it resonated with me. I think it’s a fear most parents have, not just those with children on the spectrum, but for us it takes a lot longer if ever to have that question answered. I for one often look at William and wonder, he will do things that often make me think he loves me, but this is often his way of using me as a way to meet his wants and needs, as the educational psychologist so coldly put in his report (credit where credit is due, he warned me that it would be a hard read)

I loved that Paddy met children at his local school, to speak to them but I was a little riled up when one of the children expressed how she spirals into anxiety about the thought of being late to school and its consequences and Paddy simple said ‘that’s normal’ I may be reading into it but the girl went of camera after this and the reason stated was that she was overwhelmed but I took what Paddy had said in a bad way and maybe she did to… maybe I’m over sensitive but that made me feel he was saying she wasn’t normal, I’m not sure why my mind thought that but it did and I can’t be the only one.

I loved the fact he met up with Paul Scholes and discussed his son Aiden with him who is 16, non-verbal and has some complex needs, it was refreshing to see two men who have influence and the ability to help with autism awareness, be so honest about their struggle, their fears and hopes for their children. I had no idea Pauls son was on the spectrum, let alone about the journey they have gone through together. I will definitely be doing more reading on their journey as I have recently seen an article about how he was worried he would have to put him into care, I think it would be a hard read but am looking forward to it, I enjoy reading about other parents and their journeys which is why I feel a little disappointed by Paddy and Christine’s documentary, it felt rushed and not about what parents like me face… the fight for diagnosis, the struggle to obtain financial support, the fight for the right education. I guess it just shows that having money does get you further, their parents may have money but that doesn’t mean their kids such get preferential treatment to those who need the support from poorer families.
Another prime example of this is that Christine did the AQ test and was shown to have autistic traits and by the end of the episode they were saying she had a diagnosis!

As much as I appreciate them bringing such widespread awareness to autism, what I want to see on the screen is a real-life expectation of the journey, show me the parents like me or those worse off. Show me the desperation and fight just to get our kids what they need. Document the 2 plus years of waiting for an official diagnosis, the fight with DWP to obtain DLA in order to buy specialised clothes, bedding and toys (and the rest) for our kids. The fight to get into an adequate school or any school at all… I’m not saying Paddy and Christine’s struggle isn’t real as I really appreciate all they do for awareness and if I had the money, I would do the same thing but for most parents it’s just not possible. I want realness on the TV, I want the next parent who doesn’t know what autism is until its their own child has something they can use as a guideline, so they don’t breakdown like I did. I don’t think it’s too much to ask, is it?

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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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