Posted in school

Self doubt

I had a moment last Wednesday night… and when I say a moment I mean that I didn’t sleep through worry (or maybe it’s this cold 🤧)

I worry alot so this may not seem unusual but this was different, this wasn’t necessarily my usual kind of worry. This was more self doubt. I had fought to get William the right education for what feels like eternity, we got the school we chose but I started to panic that I was wrong. What If it wasn’t the right decision. What If I had fought so hard for the wrong thing.

This hadn’t come our of no where, it was because Williams dad and I were taking to his new school the following day and I had become immersed in this overwhelming fear that I was wrong. I can only compare it to one other feeling I had had previously and that was when I was pregnant, I was terrified that when I went for my first scan, there would be nothing there. It was that same kind of feeling! I spoke to other people about the scan feeling and I’m most definitely not the only one and I imagine my doubt about the school wasn’t just something I experienced but last Wednesday night I felt alone in my fear.

The Thursday morning was just as bad, whether is was the cold, my bad shoulder, the lack of sleep or the worry… maybe even a combination of all three but I didn’t stay still, I couldn’t eat or focus on anything other than watching the clock waiting for the time I needed to meet William and his dad. Let’s just put it this way… the saying is right. A watched clock does go slower. ⏰️

I had spoken to Williams teachers via email a few times over the last few weeks but it’s not the same as meeting face to face. The moment we arrived at the school, they put me at ease. They didn’t just fall in to SEN teaching, they are there because they are passionate about it, because its not just a job to them but a vocation. They know every child from noises they makr in the other room, from tiny footsteps or a stray sock on the floor. Other parents had given me glowing reports about the teachers too which all made sense once i met them. William immediately connected with them and just left us to go and spend time with his new classmates. I knew as soon as he did that, that all the worry was for nothing. It was 100% the right decision for William and I was right to fight so hard for it.

The school itself is perfection. Everything is laid out perfectly, there is structure to everything and more visuals than you can possibly imagine. It’s so accommodating for children like William. I would love to say I held it together but we all know that would be a lie. I sobbed at how perfect it was for Williams education, the fact that he will travel through the school and be safe and in the right environment until he turns 19 just gave me this overwhelming sense of relief and in a big headed way a sense of accomplishment. I did that. I fought and I acheived it. All the worry was gone and I felt proud of myself.

27 days. That’s all he has left until he joins his classmates and I can not wait. I’m so excited for him to be in an environment that will be so beneficial to his development.

Uniform all ready 🥰

It’s been a long time coming but it will be here in the blink of an eye and as confident as I feel about it, I know that come that date in April I will be an absolute mess.

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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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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 Emotions

The Fall Down

Autumn is my favourite seasons. The leaves change, Hull fair snacks are readily available 😋 Halloween 🎃, Bonfire night 🔥 and Christmas🎄 are right around the corner. I can almost smell the fire smoke in the air. It slowly becoming acceptable to put the heating on and to start wearing woolly tights and boots. The clocks will go back and dark cosy nights with candles, blankets and movies are just around the corner.

But then again, I hate this season in equal measures, some days it can’t decide if its summer still and its too hot but its raining and there is no physical way to be dressed appropriately and, in my opinion, it is cold and flu season…. Traditionally this falls between December and March but in my house, it always starts in the September.

In this new world in which we live, you can imagine the first thing that comes to mind when you start coughing and sneezing all over the place and genuinely looking like the walking dead 💀 I can handle being poorly, I don’t handle it well, but I handle it 😂 William being poorly is a whole different ball game. He can’t tell me what’s wrong, so it is a guessing game from the moment his behaviour changes until he develops full symptoms… is it tonsilitis? Stomach problems? The flu? The thought process gets pretty dark… what if its measles? Did I see spots? What if its Corona? Or Ebola? Or the plague? Or maybe, just maybe, it’s just a common cold.

I know my reasoning is pretty extreme, but my point is that it’s just never possible to tell what is causing the issue until the issue itself become apparent. William reacts to many situations by shutting down, this means he will withdraw from almost everything, he will barely eat and will try to sleep for avoidance. This could be because he doesn’t want to do something like leave the house or partake in a certain activity but could also be because I had to trim his nails, stopped him eating carpet fibres or didn’t let him smear the contents of his nappy. In some instance it’s because he doesn’t feel well. How do we know the difference? There is one simple answer… we don’t!

Its purely a guessing game… I have to evaluate everything that has happened prior to his shutdown and try to figure out. This means I have to be ultra-conscious of what happens on a day to basis and must be switched on at all times. This still means I have to try isolate what could be the problem and act appropriately, if in fact any action is necessary. On some occasions, no matter how much I analyse what has happened, I get it wrong and its simply because he is coming down with something but with no prevalent symptoms, it is impossible to know until it fully hits him.

I’m not going lie, sometimes it’s exhausting and sometimes when he cries, I cry but that’s ok because it doesn’t mean I’m a bad mom or a failure. It means I am trying my best and that’s all we as parents can hope for.

Despite this I do love Fall just not the downs that come with it 🍂 xx

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Posted in Emotions

Overcast

There is no manual for being a parent, there are help books and forums that can point you in the right direction, but what if your child has autism? Every single day is different and thing which have been successful in the past may not work out in the future.
If there was a manual for William, then I would give up everything I have for just an indication that I was doing something right.

Days like today are tough, I don’t know if it’s because I was already feeling a bit low, but the most insignificant thing tipped me over the edge… Orbeez. They are these tiny little beads that grow much bigger when in water and anyone who has used the will probably think it was the disposal that I found traumatising, but it wasn’t. We have used these on a fair few occasions and William has loved them with no incident, so much so that I had 50 thousand of the little fuckers to fill the bath with. He didn’t want to get in and lashed out at me, then he grabbed handfuls of them and threw them all over the bathroom but decided he did in fact want to get in and proceeded to fight me as I tried to remove his nappy. Once in the tub it went even further downhill as he started eating them… FUCK YOU PICA! I kept stopping him putting them in his mouth but, his other hand was ready with a fistful to shovel in and holding onto both was near on impossible. Getting him out the bath felt the same as he didn’t want to so flopped himself down and flopping about when I tried to grab a hold of him.
It felt like hours, just stopping him eating them (and failing) and trying to coax him out of the bath.

I wrapped him in a towel, and he snuggled into me, I sat there telling my four year old that I didn’t know what I was doing and that I would try to do better, that he deserves a better mom than me. It was all very dramatic even for my standards over a few non-toxic water beads. 🙄

I’m just having one of those days in which I feel like I am not good enough, these kind of days just creep up on you like a small grey cloud in the sky but before you even notice you are suddenly in a thunderstorm. That’s how my head feels today.  A little overcast and very dark ☁ but I am sure it will pass… just like the Orbeez.

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Posted in Emotions

Non-Starter

Let’s have a moment of silence for all those moms that expected this week to be something it isn’t…

Let’s think of those parents whose children are starting mainstream schools; those parents who are scared that this isn’t the right environment for their child and the parents who know it isn’t the right environment for their child but whose hands were forced.

Let’s think of the parents like myself whose children are yet to be allocated a suitable school. Whose children are getting left behind.

But let’s also celebrate the parents of all the four-year-olds out there who are happily and successfully starting their school journey. I will like their first day pictures on Facebook and comment about how adorable and grown up they look, but it’s tinged with sadness on my part.

We are back at the stage of jealousy for me, the green-eyed monster has reared its ugly head…
‘Why isn’t that my child?’
‘Why do that child’s parents get all these experiences that I once dreamed of?’
‘What did I do wrong, and they do right?’

Its stupid to think that way and usually its easy to swat away those thoughts like flies but right now its hard. I think that’s because its everywhere, social media, supermarkets, TV. There is no escape from what this week is. Its the start of the school year! Whoop de fucking whoop!

I wanted to photograph William in my street as me and H were outside my mom’s, I wanted to take photos with next doors youngest girl as she is starting secondary school, both in their slightly big but immaculate uniforms on their first days…but that isn’t happening.

I was naive and booked this week off work, I’m not so why as we were no closer to William securing a suitable setting but I guess I will still hopeful (or still had my head in the sand who knows 🤷‍♀️) I envisioned walking him to school and meeting other parents, talking about how big our kids are and how they’ve grown up so fast, how it was only yesterday when they were still in nappies and toddling around. I feel hard done to, and I know how bad that sounds as William is such a beautiful child and I wouldn’t change him for the world, but right now I feel robbed. Robbed of the firsts in which I expected. Every day with William is wonderful but as his peers are growing up and moving on, he just isn’t. We are in the same place we were 2 years ago, nursery, nappies, messy mealtimes… don’t get me wrong, I do know and fully appreciate how far he has come in those two years but this week its hard.

My week off will now be dedicated to decorating, continuing the journey of turning my house into a home, something to keep me busy and my mind occupied as we follow the same routine we have for years. I’m so grateful that William’s nursery said they would keep him as long as possible, but that journey should have naturally ended now, and it hasn’t.

So again, let’s just take a moment for those moms whose week isn’t as expected, those who instead feel angry about it, disappointed, upset. Those moms who may spend this morning crying into their coffee, writing angrily at a laptop or smiling through the heartache or in some cases all three.

All my love to all moms out there, no matter the situation you are in this week 😘 M. x

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Posted in Emotions

Panic! at the play date

I have come to realise that I’m a bit of an introvert, it sounds silly as I come on here and share so much information but in real life I shy away from people, I avoid activities and places that I am uncomfortable with, and I want to keep myself away from people who may judge me as a mother or William as a child. I am now at the point in which I don’t know if what I am doing is to protect myself or him. I want to tell you about my irrational fear of playdates…

I went on a playdate once, I mean there has been more than one over the years considering we have one every week minimum but this one is the most memorable, it much have been well over 2 years ago and I must say it was one of the most horrendous moments of my life.

William was definitely under the age of two as it wasn’t until his two-year check-up that I started to accept his potential problems.

Soft play! What kid doesn’t love soft play? My kid; that’s who!

I went with two friends from work who had both had their children around 5 months after I had William, please bear in mind that these two women, were women I felt comfortable with and had spent a lot of time with over the years, but I was dreading it, I remember being stood at the bus stop feeling so sick that I almost cancelled. I had already started noticing the stark differences between my child and children of his age and being around them and trying to sugar coat and deny Williams delays in development was exhausting and the more I had to do it, the less I was convincing myself.

Their children were beautiful but that wasn’t what bothered me, what bothered me was that they were so agile on their feet, they climbed and played independently, they communicated not only with each other but with their moms too whereas William just clung to me crying. He was barely walking independently and struggled to communicate non-verbally let alone with words.

The date didn’t end with soft play, we went for lunch. Their children played and independently ate and seemed to thoroughly enjoy themselves. William refused to eat and remained silent.

I felt like a failure, what had I done so that my child wasn’t like theirs? Was I not loving him enough? Was it because I was working and wasn’t with him all the time?

I didn’t reach out for another play date.
Was that wrong of me? I truly don’t know. I don’t actively seek out play dates with anyone, but sometimes they just happen.

We have play dates once a week with the same child and they go really well but they are often in the comfort of our home, William has familiar surroundings and can easily access his safe place. We have had a few outside the home and some have been great and others not so much, but it all depends on how William handles the situation or environment. We went into our local park once and it is truly beautiful in there, I don’t think I appreciate it enough since its on my doorstep but on this day it was busy, it was a half term of some sort and William was struggling, he wouldn’t walk and I didn’t have the stroller since we are still waiting his referral and he kept laying on the floor to the point I was peeling him off it like day old gum. Teens laughed at him and I felt myself getting more upset, William continued to shutdown… It was not a good play date, but we continue to have them, maybe it’s because I understand William more now than I did back then, I just don’t know. I don’t know why these playdates don’t bring on anxiety and sickness, but others do. Maybe it’s the unknown 🤷‍♀️

I guess I need to put myself and William out there more, but I don’t know if it is what is best, William doesn’t engage with other children at nursery so am I being unrealistic in trying to get him to engage with other children on his days off, is it fair on him? But then am I just saying that because the memory of how bad of a mother I felt back then is impacting my decisions now?

How silly is it that something so simple as meeting other parents and kids can make me feel so anxious that I am physically sick? How do I get passed this? Do I even need to?

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