Posted in school, Uncategorized

26/04/2022

I would like to take this opportunity to apologise for the fact I haven’t written a post in a while but last week was a big week for us and a very emotional one. I felt that it wasn’t the right time to do any kind of writing so that I could process that William had finally gone to school.

I had been very honest about how I was feeling in relation to William going to school and had taken some time off to come to terms with this big adjustment and to be there for William every step of the way.

I’ll kick this off by sharing some photos of his first day, we came together as a family (as we should) to be there for William on his first day, I think it was more of a big deal to us than it was William.

26/04/2022
26/04/2022
26/04/2022
Proud mommy – 26/04/2022
William and his daddy- 26/04/2022

William was an absolute superstar, he was so excited to get on the bus and start his educational journey. He loves travelling so choosing to send him on transport was most definitely the right option… well the only option since I don’t drive myself (although driving lessons are now booked 😬🚘) but even when I do, or if I do, I think I will still send him on the bus as he’s made a friend and it’s so good for him to have that 1 on 1 social interaction although today he did get moved this week because he was eating the little boys coat 🤣 Pica at its finest.

I’m not going to lie and say I wasn’t a mess on his first day, second day and so on but seeing his face as he got on the bus was so fulfilling that I genuinely forgot about all my own fears and doubts, my own insecurities just fizzled a little. His face, full of confidence and joy made me feel worthwhile as a mother. I have done a bloody good job so far and now his teachers can continue with his education and help him develop and I will continue to help turn him into the lovely little boy he is and the amazing man he will grow to be.

I’m sat here at 11.47am on a Thursday, my house is clean and I have the time to sit and write this, watch some TV and just breathe… it’s an odd feeling but not the horrendous one I thought it would be. I’m not breaking down or feeling sorry for myself. My little boy is growing up and starting a journey in which he should have started last year. its hard when he doesn’t want to get off the bus on a night because i have this little voice that goes ‘he doesn’t need you now’ but that’s not true. We always need our parents. I’m in my thirties and still need my mom to tell me everything will be ok. William needs me, just not as much as he did before but i’m ok with that… we need to let our kids go so that they can fly and he is doing that.

We have this whole new support network in his teachers and his passengers assistant on the bus who is amazing and so lovely. She called me a few times the first week to let me know how he was on the bus as she saw I was upset. His teachers email me updates and there is an app in which they upload photos and comments. They have their first parents opening soon for the queen’s jubilee in which they will do a parade around the school, sadly I can’t attend but Williams dad will be going to support him.

I’m excited and nervous to see how school will help him develop but it’s a whole new chapter and i’m excited to start sharing it with you all. Much love, M. xx

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Posted in Appointments, Brief updates

Wheelchair services

It’s been almost 2 years in the making but today, Williams new adaptive stroller finally arrived.

If I start from the beginning, we asked for a referral via our health visitor who put the request through our doctors. Who lost it after a year despite me chasing it repeatedly 🙄

A second referral was put through after weeks of chasing our doctor… apparently there is only 1 doctor for everyone in Hull or at least that’s how CHCP make me feel.

Let’s just point out that in this time he had fully outgrown a standard stroller and I had purchased a second hand adaptive Maclaren Major Elite stroller specifically designed for children from 6 months to approximately 8 years. It was expensive but worth it and William was comfortable and safe. It wasn’t going to last us forever but would do until we got sorted because let’s remember, covid fucked us in regard to appointments and referrals for the last 2 years.

The actual appointment with wheelchair service came much later, in fact it was October last year. Williams dad took him and he was assessed by a clinician, a clinician who decided that a Maclaren chair wasn’t suitable and he wouldn’t issue one for us but would look at a PWB which is a personal wheelchair budget and we could potentially gets a different stroller as long as its deemed suitable. Brilliant!

Fast forward 2 weeks and there is a fucking wheelchair sat in my hallway!

The delivery guy came and I turned him away. This wasn’t right for my son. We had discussed the issues with a wheelchair like this, in ridiculous depth with the PWB worker but she sent the chair back and I was forced to accept it. It just took up space in my already crowded office.

They all agreed it wasn’t suitable for Williams need so why was it sent? Why would they not collect it claiming it would leave William without suitable provision. That whole scenario was just mind numbing. How could a self propelled wheelchair be suitable for William? There was exposed velcro which would cause him sensory problems. Plus many many more issues including hygiene and safety with William being able to access the wheels.

The woman who dealt with us said she was referring it back to a clinician to get us a Tendercare Snazzi stroller but then she left NRS and it was handed over to someone different. The gent who took over ignored all calls and emails and only came back to me after I went on social media and Trustpilot publicly shaming them for failing to assist my son. Then he was suddenly able to reply to my multitude of emails.

Suddenly a Maclaren was suitable but they couldn’t provide one due to stocking issues but they can offer me the Tendercare Snazzi. I immediately accepted it and queried when delivery would take place and collection of the chair. I felt the Snazzi was suitable for his needs and that’s all that mattered.

But wait…

The Snazzi is out of stock 🤔 but they can offer me an off brand Maclaren knockoff or a Tendercare Snappi. The PWB guy told me to take the knockoff as similar to what we asked for… you know the one they were telling me wasn’t suitable for my 4 year old but designed for much younger 🙄 Needless to say I declined this option and went for the Snappi.

And based on his face… I made the right decision.

It’s been a long wait and it’s been worth it in the end but there shouldn’t have been a such a wait at all. There are so many failings in the NHS in regard to referrals themselves and again with services such as NRS. I hope they take my trustpilot review on board and look into what went wrong so that no one else goes through the heartache of chasing a service or even just replies that aren’t coming.

Apologies for spelling and grammar etc but I’ve wrote this one on my mobile 🤣

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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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