Posted in Brief updates

Congraduations 🎓

It’s a bittersweet feeling when children of William’s age are moving on and he isn’t, on the 16th July he officially graduated from nursery, only he didn’t.

I’m looking at his little diploma now and it brings tears to my eyes thinking about it, I’m sad but I’m not sure if I am sad for William or for myself. It sad that he doesn’t get to start school with children his own age in September but then if we think about it, he isn’t like children his own age.

William doesn’t understand that he should be going to school so the more I think about it, the more I think about it the more I realise that I am sad for me, sad that I don’t have the excitement of a first day, meeting other mom’s in September, school uniforms and meeting teachers etc. I know it will come eventually but the delay just makes me feel like we are even more different from other children; i feel like its segregating us further.

On the other hand, it makes me really happy about how inclusive his nursery are and that even though he isn’t moving on, he got to graduate with his class. I am so grateful they are keeping him until the easter term; I honestly don’t know what I would have done if they had of said no.

A short and bittersweet update today, much love M 😘 x

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Posted in Brief updates

Announcement

I have been sat on something for quite some time now but have been cautious about making it public knowledge until the right time, but I think now is that time, time to let the proverbial cat out of the bag 🐈

I have been a little Jekyll and Hyde in posts about mainstream schools, those that have been around since the beginning; since before ‘Our journey onto the Spectrum’ was a thing and it was just simply our life, will remember how adamant I was that William was would get the education he needed, the education he deserves. Somewhere over the last year, what was right for William got turned around and it because what was right for the Local Authority.

Pressure was put upon me to name mainstream schools, with phrases such as
‘by law you have to name mainstream schools for allocations…’
I can categorically state this is absolute bullshit! But when the forms came through, I felt forced to do so, I felt manipulated and bullied into making a decision that I new deep down was not correct for my child.

The crushing disappointment that came on February 15th when William was left of the consideration list for special school places almost tipped me over the edge mentally and knocked the little bit of fight out of me that I had left. I remember saying to Debs that I just couldn’t fight anymore, and she told me I was only just starting… she is usually right always right but I just felt so deflated that I wasn’t ready to admit that to myself. If we think back to that time; I kind of had a lot of other things going on in my personal life. Breakdown of marriage, adjusting to being on my own, juggling my finances and not being able to see my family due to covid. I think I was at a stage in which if the Local Authority told me to have William educated in the local dump, that I would have agreed.

Williams EHCP draft was completed on 29th April, but I didn’t get it until 6th May, I filled out my parental response form naming the mainstream school I had chosen and in which myself, the nursery and the Local Authority Senco had all liaised with shortly before.
The head teacher couldn’t confirm they could meet Williams needs without the EHCP but I was expected to name them for the final copy without this confirmation… I felt I had no choice, so I named them and was ready to post it and I am so grateful I didn’t do it straight away.

On the 7th May, I got my fight back with help from the most amazing woman, a woman who has never stopped fighting for what is right for her child. A woman who helped me kick myself up the arse and point me in the right directions about my rights. K❤ If it wasn’t for her, I wouldn’t have sought legal advice, which I have been given free of charge thanks to the specialists she pointed my in the direction to… I have since been awarded legal aid and its not even something I would have looked into if not for her.
I tip-exed out my school of choice and wrote that I specifically wanted a specialist school and named one in which I feel and have always felt would be appropriate for the education of my child, one in which can without a doubt give my child the education he needs and deserves. I sealed it and sent it straight away. ✉ Had it have been 24 hours later I would have made the biggest mistake of my life (and believe me, I have made a few… divorce impeding remember 🙄

I think friendship and support comes from the most random and unlikely places but when your children have special needs, you just see each other and think ‘I’ve got you’
There are so many people in my life that have supported us in this journey purely because they understand and  have been there themselves.

The Local Authority doesn’t tell you what you need or are entitled to, the don’t point you in the right direction for your children, they point you in the direction which is the best for them. It’s the other parents that do that, the parents that fought a little harder than we did, the parents who scraped and struggled for help and answers. They then pass that down to us.

The NHS isn’t much better, purely because the communication between departments is virtually non-existent when it come to special needs kids so not only are you fighting one entity such as the local authority but also the NHS and its procedures and policies. I am a huge fan of the NHS and the Queen has rightly awarded them with the George Cross, which is the highest award bestowed by the British government “for acts of the greatest heroism or for most conspicuous courage in circumstance of extreme danger” and the NHS truly deserve it due to all they have done to save lives not only during the Covid-19 pandemic but for the last 73 years.

I saw this a while ago and thought it summed everything up perfectly…

Other parents came into my hole to help me, and I will happily climb into the next person’s hole because that is how this works.

Anyway, I digressed a little from the point, should the Local Authority fail to provide William with an acceptable school setting which will meet all his needs, baring in mind this has to be done by the time the send me the final copy of the EHCP, then I am fully ready to take them to a tribunal. It looks like it may be a big fight 🥊 but I’m ready this time.

Let’s end this post on something amazing.
This is something I never thought I would be able to tell people, William spoke… and in true William fashion; just like all his other firsts, it was at Big Nannas 🥰

He said ‘Nanna’ in context, six times!!! Six whole times!!! and the following day did it again when going passed her street. These may be complete flukes and I don’t want to build massive hopes upon it, but it is so much more than I ever expected. I mean Mama would have been even better but beggars can’t be choosers 🤣

All my love, M xx

Posted in Appointments

Moderating in time

Today was the day in which I should have had an update about Williams EHCP, I should have been able to figure out what the next steps are going to be for Williams education and find out if that slim chance of a special school allocation was within our grasp.

However today was not that day. No days are the days they should be and I an beginning to learn this… I need to prepare myself for these things as they happen all the time and yet continue to knock me for six. As parents we shouldn’t be continuously let down by those who are supposed to support our children and adhere to timescales laid out by themselves.

The EHCP has not gone to the moderators… Still! This is because the medical report needed and the Speech and language report have still not been received. These should have been submitted by 15th of February and its now 4th March 🙄😡

So now we are back in the waiting game… Next week or the one after. Who even knows?!

Posted in Emotions

I F***ing hate you

Its nights like these I really wish autism was a physical being so I could kick the shit out of it. I fucking hate you autism you son of a bitch!!!

Its 11:30pm and William is still awake. He is calm and comfortable watching TV in his room. Before anyone jumps on the too young to have a tv in his room please remember that the only thing that can soothe William is the wonderful invention that is BabyTV and even then that’s only works some of the time. Could you imagine my neighbours during his frequent 4am screaming fits without it?

A little while ago it was a completely different story. William had spent the last half an hour or more hitting himself. Believe me it felt like a fucking lifetime. He doesn’t have a massive amount of strength in his arms so one little slap wouldn’t necessarily hurt anyone but he continuously slaps his stomach or legs with both hands until they are red. It’s really difficult to watch and if I try to restrain him he will lash out and bite me or become even more upset. And believe me when I say this he has the strength of a pitbull in those jaws.

Its these moments in which I feel like a huge failure as a mother.

I have tried everything to pull him out of these self harming states but nothing works so I tend hover in the hall or in his room and try to distract him but often just watch him and cry.

It makes me feel like an absolute failure as a mother. I’m supposed to protect him when someone hurts him… what am I supposed to do when he hurts himself?

The worst thing about this evenings episode was the reason he was hurting himself, it was something as simple as needing a poo and then the discomfort of needing changing afterwards. This has never been a cause before tonight and he is on medication to help him go but for some reason tonight it was an issue for him.

I need someone to blame. Someone to shout at. I write often about accepting that we are not to blame for William having autism but it was easier when we did think it was us because it was easy to direct hate at ourselves.

Who do I hate now? The diagnosis we still don’t officially have? The genetics that he may have inherited? The fluke that may have caused it? God? I just need something or someone to be mad at! I just need a reason… Why?

Posted in Emotions

Two faced

these are the faces of autism

and so are these…

It took me a long time to be able to tell people that our child has special needs, that our child has a developmental delay or that I look like shit because I was up until 4am just laid net to him on his bedroom floor.
There is no shame in having a child with autism or a child that hasn’t hit their milestones when their peers have but there seems seems to be this stigma around it or at least that’s how we felt.
I share many stories about William (with any one who will listen) and always explain he has additional needs but i’m not sure why. Why do people need to know? why do we as parents feel the need to explain their behaviours? Does Tom, Dick or Harry need to know?
I suppose any parent in our position will tell you that everyone on the outside of this not so elite circle will tell you that they know a person with autism and they’re fine or they know someone who was non verbal and now they speak all the time etc etc etc… blah blah blah

Autism is a spectrum which means it covers a range of conditions so although autistic people share certain difficulties not one person who has autism is the same as another who has it. This means that they need different levels of support. Most people on the autism spectrum will learn and develop but only with the right sort of support which if you have read our previous posts can be difficult to get.

Today was a difficult day. It started at about 1am in which William was awake and having a full meltdown so I did my mental check list

  1. Does his bum need changing?
  2. Is he thirsty?
  3. Is there something in his bed that he doesn’t like?
  4. Does he want a cuddle?
  5. Does he have a temperature?

At 1am the answer to all of these was a definite no. Number 2 resulted in him shoving his juice bottle into the side of my head and number 4 resulted in him hitting and biting me. I tried everything to calm him and by 4am we were laid on his bedroom floor just staring at each other. I couldn’t touch him and I wasn’t allowed to make any noise but he was at peace for the first time in hours so the back pain this morning is most definitely worth it.

Fast forward to a very sleep deprived mum this today and i’m not sure who has cried more. Me or William?

I understand this is a little bit of a ranty post but I just like to speak or when that’s not possible type and those that know us personally understand how angry I get when i’ve not slept 💤

William is currently in his room destroying everything that is still standing so i’m hoping he will soon tire himself out but that’s as likely as us winning the euromillions!

I refer to William quite often as a psychopath... when he hits me and laughs, then I tell him off so he fake cries and then laughs again... honestly he is such a character and a master manipulator; when Dave wakes up he will start crying. Dave runs in 'is he ok?' 'how long has he been like this?' he will scoop him up and cuddle him and William will just happily lay there with him. I can't help but feel a little jealous. They have a beautiful relationship and it stings a little that William doesn't have that kind of bond with me. He never hits Dave. Never bites him. Its it because I am the one that is here more? and his time with his Dad is more precious to him?

I sometimes think it may be because I struggled to bond as well with him straight away. As many of you are aware it took almost 2 years for me to admit and be diagnosed with postnatal depression. I loved William before he had even entered this world but struggled to adjust to such big changes in my life.
I went from working full time and my life been my job to been on maternity and finding out my office was shutting down. Then as time went on I started to realise William wasn't like children his age. It was tough and I think I hid it well for quite some time but did William pick up on this?

I think Family life is never what people picture it is. Movies, TV, books and social media put unrealistic expectations on people to have a perfect life and it has taken me a long time to realise there is no such thing! My living room is a mess and covered in dog hair and toddler snot so fuck you Mrs Hinch with your baby, dog and immaculate house! Although I do love the products she uses 🙂
Fuck you Kylie Jenner with your washboard abs 4 weeks after giving birth! In fact you know what, Fuck you Kevin Systrom & Mike Krieger for creating a platform in which pictures are worth a thousand words and every single word is a fucking lie.